Today it’s official: Jack is getting baptized next Sunday at the church we’ve been attending for a few years, Salem Lutheran. I am thrilled.
After years of wanting to have him baptized, it was finally perfect timing, and it’s really happening!!! We have Pommy’s blessing, and Jack is OK with it (which is not to say that Jack’s approval is required, but at least he’s not nervous about it anymore. Here is more evidence that God is always working—working on me, on Pommy, on the kids, on everything and everyone at all times. He doesn’t take a day off. It must be exhausting.
26 Good Things About Thyroid Cancer
Actually, there are more than 26
Being grateful it’s not terminal pancreatic cancer
Chemotherapy, as in “none required”
Doing things you’ve always wanted to do because any cancer diagnosis makes you want to live life more fully
Everyday is a blessing (everyday has always been a blessing, but it seems more true now)
Fancy thyroid scar
Gummy bears eaten at 10 am with running friends is OK on low-iodine diet. This alone is cause for celebration!
Hair loss from changes in Synthroid dose minimal and only noticeable to me
It’s easier not to sweat the small stuff now.
Jokes about thyroids open up whole new department in my sense of humor
Kangaroos rarely diagnosed with it
Low-iodine diet results in small amount of weight loss and much healthier eating habits, if only temporarily
MRIs I wouldn’t otherwise have had done rule out other diseases and bad stuff.
New appreciation for the thyroid’s contribution to bodily processes. Very underrated gland.
Opportunity to show my kids how to have faith and be brave through trials
People tell you they love you and show you they care when you get diagnosed, and it feels good to be loved.
Quality of life better now
Radioactive iodine treatment, which for me results in loss of taste for 4-5 weeks afterwards, makes me really appreciate food when the taste buds come back.
Sleeping through dinner perfectly acceptable when hypo for scans or treatment
This list
Undeniable presence of God throughout trials
Vegetables and fruit, allowed on the low-iodine diet, produce delightfully regular stools.
Writing responses to newly diagnosed patients on the thyroid cancer listserv; it feels so good to give back and help others the way others helped me after I was diagnosed.
Xylophone playing allowed—no, encouraged—while in isolation after RAI.
Yodeling also OK while in isolation. (For that matter, anything goes. Who’s going to tell you “no”? After all, you’re radioacive, dude.)
Zapper, bug (I’ve been told I am a bug zapper when I’m radioactive. I’ll have the opportunity to test this theory in 4 days.)
Everything on the timeline of my life has fallen onto one side or the other of my radioactive iodine treatment--sort of like BC and AD. Except it's BRAI and ARAI (Before Radioactive Iodine and After Radioactive Iodine). I can’t think of life as one continuum anymore—the same way I couldn’t fathom it as a continuum when I was about to give birth to both my boys. You know that things will be different afterwards (much more so with a new baby, but…), and you obsessively prepare to try and make the transition easier, but nothing you do really prepares you completely for the new life that waits on the other side of the date, whatever the date may be.
Will I have salivary gland damage? Will I lose my sense of taste again? Will I get teary eyes like I did last time? Will I feel nauseous—even a little queasy? Will I feel like I’m buzzing? Will I sleep a lot? (I didn’t sleep that much last time, but I was in a hospital room for 48 hours after the dose, and this time I’ll be at home in my cozy cocoon.) Will Jack have an easier time with accepting me back after I’m safe to be around? That was hard last year.
I do feel lucky to be going through this. though. My aunt lost her husband, Dale, to prostate cancer in TK, and I imagine that her life now feels to her like it was split into two parts on the day he died. There was Before Dale’s Death and now there’s After Dale’s Death. And there is no smoothing over or filling of the chasm that opened up on the day he went to Heaven.
One of the girls my sister and I run with every Saturday just had her best friend undergo brain surgery for a totally unexpected golfball-sized brain tumor the doctors found on an MRI. The gal is doing well but will need some additional treatment--radiation and/or chemo. Another reason I am lucky to have this.
That's what's so easy about dumb old thyroid cancer. It pales in comparison to what others are going through.
Sunday, May 31, 2009
Saturday, May 30, 2009
Second Opinion on Pathology
Today I received the second opinion report in the mail. Here's what it says:
"After speaking with the patient who called my office about her case, I realized that the reason I received only ten blocks and no slides is because the slides had been lost during the process of closing of the initial hospital where the surgery was done and the only thing that remained were the blocks. I therefore had the blocks re-cut here in out laboratory and will indicate to you my opinion on those re-cut slides since the originals are no longer available.
She has what appears to be in the isthmus a cystic papillary carcinoma of usual type which measured 1 cm according to the original pathology report. She has in the right lobe, specimens "three" and "four," multiple foci of papillary microcarcinoma with associated positive lymph nodes with metastatic papillary carcinoma. I do not see extranodal extension. It is difficult for me to assess whether or not there is extraglandular extension by the papilllary carcinoma although in some sections, tumor nodules come very close to an inked cauterized surgical margin. What I do note in several of the blocks from the right lobe are numerous intraglandular psammoma bodies in lymphatics. This correlates well with the fact that she has lymph node metastases.
Since she was under forty-five years old at the time of the diagnosis of this case, she would be a Stage I lesion (that would be T1N1Mx) by the AJCC staging system.
In summary, then, my diagnoses are:
Thyroid gland and lymph nodes:
1) Papillary carcinoma, classic type, multifocal, largest lesion and isthmus, approximately 1 cm; no definitive extraglandular extension identified; numerous intraglandular lymphatic psammoma bodies seen. ICD9 193.0
2) Metastatic papillary carcinoma, classic type, to several perithyroidal lymph nodes; no extranodal extension identified. ICD9 193.0"
So that's it. Not a lot that's more revealing than the original path report, but the original never said anything about extraglandular extension and extranodal extension, so I like that she included some thoughts on that (although not definitive on the extraglandular extension). Oh well. The main thing for me was putting to rest my obsessive fears that I might have been misdiagnoses initially and really had a way more aggressive variant. So it was good to get the opinion to rule that out.
The first time I spoke with Dr. LiVolsi, she didn't ask me anything other than why she only got blocks and not slides, and I explained it to her; the second time I spoke with her, she called me back to let me know that her secretary, Cindy, had faxed the report to my doc's office days earlier. My doc's office hadn't received it. Anyway, it was in that second, very brief, conversation that I started babbling at her (I got all nervous that the doc herself called--even though I'd talked to her once before, I was all star-struck)...and that's when the "queen of thyca path" thing shot out of my mouth. Since it was a compliment, she warmed up more and told me the little story about her colleague having an artist daughter who made her a beautiful piece of very colorful art featuring the thyroid gland, and this person had dubbed her "the high priestess of the butterfly gland."
I've got 6 more days til my RAI and 8 more days of the LID. Yea! You know how pregnant ladies "nest" before they have their babies (I sure did!)...that's how I've been lately. I've been baking LID bread and muffins and trying to get some meals cooked ahead of time for my hubby and sons and just trying to get stocked up on things at the grocery store for when I'm isolated in the master bedroom (which is small and can't really be called a "master bedroom" without air quotes).
"After speaking with the patient who called my office about her case, I realized that the reason I received only ten blocks and no slides is because the slides had been lost during the process of closing of the initial hospital where the surgery was done and the only thing that remained were the blocks. I therefore had the blocks re-cut here in out laboratory and will indicate to you my opinion on those re-cut slides since the originals are no longer available.
She has what appears to be in the isthmus a cystic papillary carcinoma of usual type which measured 1 cm according to the original pathology report. She has in the right lobe, specimens "three" and "four," multiple foci of papillary microcarcinoma with associated positive lymph nodes with metastatic papillary carcinoma. I do not see extranodal extension. It is difficult for me to assess whether or not there is extraglandular extension by the papilllary carcinoma although in some sections, tumor nodules come very close to an inked cauterized surgical margin. What I do note in several of the blocks from the right lobe are numerous intraglandular psammoma bodies in lymphatics. This correlates well with the fact that she has lymph node metastases.
Since she was under forty-five years old at the time of the diagnosis of this case, she would be a Stage I lesion (that would be T1N1Mx) by the AJCC staging system.
In summary, then, my diagnoses are:
Thyroid gland and lymph nodes:
1) Papillary carcinoma, classic type, multifocal, largest lesion and isthmus, approximately 1 cm; no definitive extraglandular extension identified; numerous intraglandular lymphatic psammoma bodies seen. ICD9 193.0
2) Metastatic papillary carcinoma, classic type, to several perithyroidal lymph nodes; no extranodal extension identified. ICD9 193.0"
So that's it. Not a lot that's more revealing than the original path report, but the original never said anything about extraglandular extension and extranodal extension, so I like that she included some thoughts on that (although not definitive on the extraglandular extension). Oh well. The main thing for me was putting to rest my obsessive fears that I might have been misdiagnoses initially and really had a way more aggressive variant. So it was good to get the opinion to rule that out.
The first time I spoke with Dr. LiVolsi, she didn't ask me anything other than why she only got blocks and not slides, and I explained it to her; the second time I spoke with her, she called me back to let me know that her secretary, Cindy, had faxed the report to my doc's office days earlier. My doc's office hadn't received it. Anyway, it was in that second, very brief, conversation that I started babbling at her (I got all nervous that the doc herself called--even though I'd talked to her once before, I was all star-struck)...and that's when the "queen of thyca path" thing shot out of my mouth. Since it was a compliment, she warmed up more and told me the little story about her colleague having an artist daughter who made her a beautiful piece of very colorful art featuring the thyroid gland, and this person had dubbed her "the high priestess of the butterfly gland."
I've got 6 more days til my RAI and 8 more days of the LID. Yea! You know how pregnant ladies "nest" before they have their babies (I sure did!)...that's how I've been lately. I've been baking LID bread and muffins and trying to get some meals cooked ahead of time for my hubby and sons and just trying to get stocked up on things at the grocery store for when I'm isolated in the master bedroom (which is small and can't really be called a "master bedroom" without air quotes).
Wednesday, May 20, 2009
Split Personality: Brave or Lazy and Scared?
I have at least two personalities. One personality is the way I am when I’m home alone—prone to taking naps and delaying emptying the dishwasher if I can get away with it. The other personality is the way I portray myself in public, via e-mail, and on my thyroid cancer support listserv. Look how peppy I am online:
Date: May 20, 2009
Subject: Update—2nd RAI tx looming, hypo + LID again—OH JOY!
Hi, everybody!
You guys have been so awesome and helpful throughout my journey, and I just
wanted to check in and report on my status.
As most of you know, I recently had my 1-year testing. My WBS showed uptake in
the neck, and my stimulated Tg (no TgAB) is at 22, but ultrasound failed to show
any mass or lesion or node or anything surgically resectable in my neck.
After weeks of pondering and research, I've decided to go ahead with the 2nd
(empiric) RAI treatment my endo recommends. (It would have been nice if I'd been
able to go straight into the treatment 4 weeks ago, when I was good n' hypo for
the scan and Tg draw, but I wasn't prepared for it then, and I needed to do some
research, soul-searching and praying to get to this place.)
So I'm off my Synthroid since last Sunday, starting LID Tuesday, May 26, and am
scheduled to take the outpatient RAI dose (not sure how much yet) June 8. I'm
one of the lucky ones who does pretty well with hypo and I can't tolerate
Cytomel, so I just go the cold-turkey route to get my TSH up there.
I'm also waiting for a second opinion on my original pathology just to have
peace of mind about the original straight papillary diagnosis.
I wish the following for everybody out there who is dealing with thyca: clean
scans, undetectable Tg and no TgAB, definitive answers, lots of support from
family and friends, lots of laughter, and naps as often as possible!
:--)
Hang in there, fellow thycans!
Sincerely,
Lynn in Orange County, California
Biopsy on 3 suspicious nodules 1/9/08 inconclusive
2/21/08 TT (age 41)
Dx multifocal papillary carcinoma + 5/5 positive nodes
3/24/08 RAI 150 mCi
8/08 Rising suppressed Tg
11/19/08 U/S shows suspicious tissue measuring 2.2 x .7 x .4 cm
12/3/08 MRI clean
3/20/09 off Synthroid; on LID
4/13/09 TSH 60.27; Tg 22
4/16/09 WBS: “linear” uptake in neck
4/30/09 FNA scheduled; ultrasound fails to reveal any thyroid tissue; FNA
cancelled
Second RAI tx scheduled for 6/8/09
Awaiting 2nd opinion on original pathology
***
I like helping people, and I hope when I die they will be able to say about me that I had a positive effect on at least a few people’s lives. One of the ways I like to “give back” is by posting replies to people who are struggling with issues on the thyroid cancer listserv. It makes me feel good to offer a little encouragement or suggestions or perspective to others at different stages of treatment.
Here’s something I posted in response to someone else today:
Re: Help Dealing with Fatigue-->Sherri
--- In Thyca@yahoogroups.com, "laguera1963"
"clean", my Tg is elevated (70 when I went off my synthroid) So the cancer is
back. But this still has nothing to do with being tired?
Sherri, if you have recently been off your Synthroid for stimulated Tg testing
and WBS, you, of course, have been hypo and are probably still hypo. This is the
perfect recipe for fatigue. Do you know what your TSH was the day they did your
Tg blood draw? Just curious.
Don't let anyone else tell you (or imply) you're being lazy--especially those
who have never been through thyca and all its fatigue-inducing testing! Sounds
like you have a lot on your plate, and I feel for you. Sometimes reaching out
here (or at a local thyca support group) helps so much, just to remind you that
others have been in your shoes.
Like you, I have elevated Tg one year after TT and RAI and am preparing for my
2nd RAI treatment.
What do your docs plan to do about your scan-negative, Tg-positive status? What
part of CA are you in? I'm in Orange County.
Hang in there, and let us know if we can offer you anything else in the way of
encouragement.
Sincerely,
Lynn in Orange County, California
Here are two posts I wrote yesterday:
Re: Post-op 1 year-->Libby
--- In Thyca@yahoogroups.com, "libbyobrien56"
Tg/ Tg antibodies, negative. The problem IS......US showed an "ovoid" mass
(don't have the measurements, but not palpable by the endo). Since I didn't
have a post surgery US, who knows when it "showed up"....
now, I'll go HYPO ( no insurance for thyrogen) for 4 weeks and do blood work
then for the next step........! Scan dose radium?, biopsy, NOTHING...........I
hope!!??!! Any thoughts from all you fellow Thycans out there???? (Yes, I'll
do the LID! - thank god red wine is LID compatible!)
Hi, Libby.
Just wanted to say you're not alone!!! (see my siggy below)
I'll be on the LID in a few days, too, so we can lose a few pounds together and
go hypo together. Sweet!
:--)
P.S. I didn't have a post-surgery U/S until 9 months after TT, and it showed
something, too, but nobody can find it since then. (Go figure.) Hang in there
and keep your sense of humor.
Lynn in Orange County, California
+++
Re: ultrasound? MRI? as part of 1 year post-TT follow up Christina
--- In Thyca@yahoogroups.com, "Christina Sunley"
first WBS and will be going the thyrogen route. My endo has not mentioned doing
US or MRI.
Question: Is it common to also have ultrasound or MRI as part of the one-year
follow up? (I had papillary cancer in thyroid and lymph nodes.) Or are
ultrasounds/MRIs only done if something shows up on my WBS, scheduled in a
couple of weeks?
Thanks so much,
Christina
Hi, Christina,
Even if your endo doesn't usually order U/S at this point, I'd push for it if I
were you. The NCCN (National Comprehensive Cancer Network) and ATA (American
Thyroid Association) both recommend routine ultrasound as part of follow-up for
thyroid cancer. The WBS test is great, the stimulated Tg test is great, but U/S
rounds out the picture and gives you and your doc a third source of information
to rely on when assessing whether you are one of the lucky ones who will get a
NED (no evidence of disease) a year after your surgery and RAI. Plus, simply
put, U/S is the only testing method that will actually look inside your neck in
real time and give you an idea what's going on in there (hopefully nothing!).
Here is the reference in the ATA guidlines:
http://www.thyroid.org/professionals/publications/documents/Guidelinesthy2006.pd\
f
on page 17:
Cervical ultrasonography. Cervical ultrasonography is
highly sensitive in the detection of cervical metastases in patients
with differentiated thyroid cancer (208). Cervical
metastases occasionally may be detected by neck ultrasonography
even when TSH-stimulated serum thyroglobulin
levels remain undetectable (200).
R48. After surgery, cervical ultrasound to evaluate the thyroid
bed and central and lateral cervical nodal compartments
should be performed at 6 and 12 months and then annually
for at least 3–5 years, depending on the patients' risk for recurrent
disease and thyroglobulin status—Recommendation B
Best of luck to you!
Lynn in Orange County, California
I’m totally tooting my own horn here, aren’t I? Yep. It’s kind of annoying to me that I will take a situation like my being diagnosed with thyroid cancer and try to make it into a “look how great and helpful and therefore lovable I am” kind if thing. They say that at depression’s roots, there is much narcissism, and that makes sense to me. When you’re a kid and you’re hurting, you become so in tune to your own feelings that when you’re an adult, you’re so used to focusing on how you feel that you become self-centered, in every sense of the phrase. Centered on self, totally focused on your self. This is something that I guess I’d like to change about myself (really? You sound pretty complacent to me—“I guess I’d like to change”), and I’ve asked God to help change me, but I sincerely don’t think I’ve made andy progress. I have to bite my tongue sometimes not to start talking about myself when they are telling me something that’s bothering them or something that’s going on in their lives. I know the Bible advises against this in so many direct and indirect ways. Here’s one:
“Let nothing be done through strife or vainglory; but in lowliness of mind let each esteem other better than themselves. Look not every man on his own things, but every man also on the things of others.”
--Philippians 2:3-4, American King James version
By the way, have we talked about how awesome the book of Philippians is? The basic premise is that you gotta hang tough in tough times, and you gotta keep praising God during trials and tribulations.
How beautiful is this?
“But I would you should understand, brothers, that the things which happened to me have fallen out rather to the furtherance of the gospel; So that my bonds in Christ are manifest in all the palace, and in all other places; And many of the brothers in the Lord, waxing confident by my bonds, are much more bold to speak the word without fear. Some indeed preach Christ even of envy and strife; and some also of good will: The one preach Christ of contention, not sincerely, supposing to add affliction to my bonds: But the other of love, knowing that I am set for the defense of the gospel. What then? notwithstanding, every way, whether in pretense, or in truth, Christ is preached; and I therein do rejoice, yes, and will rejoice. For I know that this shall turn to my salvation through your prayer, and the supply of the Spirit of Jesus Christ, According to my earnest expectation and my hope, that in nothing I shall be ashamed, but that with all boldness, as always, so now also Christ shall be magnified in my body, whether it be by life, or by death.”
--Philippiamns 1:12-20, American King James version
When I read that, I know with certainty that I am nothing more than a vehicle for faith and for spreading faith. That I am nothing more than a possibility of furthering God’s kingdom. I can be in my flesh all the time and be totally unspiritual and stay away fromGod or I can hang close to Him through thick and thin Life feels easy when in the “thick,” and this is usually when I think I don’t need God; “thin” is when I usually go to God, and that’s where I should be all the time.
When I read Philippians 1: 12-20, I also know that I can choose to be God’s servant or I can choose not to back up and look at the big picture. I can choose to let God be glorified (magnified) through me and my actions and my faith and my behavior, or I can choose to do this whole thing (life) by myself, and if there is any (flimsy, thin) glory, take it all for myself.
“Christ shall be magnified in my body,” thyroid cancer cells or not.
Also, here’s an idea of why I got thyroid cancer:
“For to you it is given in the behalf of Christ, not only to believe on him, but also to suffer for his sake.”
--Philippians 1: 29, American King James version
Date: May 20, 2009
Subject: Update—2nd RAI tx looming, hypo + LID again—OH JOY!
Hi, everybody!
You guys have been so awesome and helpful throughout my journey, and I just
wanted to check in and report on my status.
As most of you know, I recently had my 1-year testing. My WBS showed uptake in
the neck, and my stimulated Tg (no TgAB) is at 22, but ultrasound failed to show
any mass or lesion or node or anything surgically resectable in my neck.
After weeks of pondering and research, I've decided to go ahead with the 2nd
(empiric) RAI treatment my endo recommends. (It would have been nice if I'd been
able to go straight into the treatment 4 weeks ago, when I was good n' hypo for
the scan and Tg draw, but I wasn't prepared for it then, and I needed to do some
research, soul-searching and praying to get to this place.)
So I'm off my Synthroid since last Sunday, starting LID Tuesday, May 26, and am
scheduled to take the outpatient RAI dose (not sure how much yet) June 8. I'm
one of the lucky ones who does pretty well with hypo and I can't tolerate
Cytomel, so I just go the cold-turkey route to get my TSH up there.
I'm also waiting for a second opinion on my original pathology just to have
peace of mind about the original straight papillary diagnosis.
I wish the following for everybody out there who is dealing with thyca: clean
scans, undetectable Tg and no TgAB, definitive answers, lots of support from
family and friends, lots of laughter, and naps as often as possible!
:--)
Hang in there, fellow thycans!
Sincerely,
Lynn in Orange County, California
Biopsy on 3 suspicious nodules 1/9/08 inconclusive
2/21/08 TT (age 41)
Dx multifocal papillary carcinoma + 5/5 positive nodes
3/24/08 RAI 150 mCi
8/08 Rising suppressed Tg
11/19/08 U/S shows suspicious tissue measuring 2.2 x .7 x .4 cm
12/3/08 MRI clean
3/20/09 off Synthroid; on LID
4/13/09 TSH 60.27; Tg 22
4/16/09 WBS: “linear” uptake in neck
4/30/09 FNA scheduled; ultrasound fails to reveal any thyroid tissue; FNA
cancelled
Second RAI tx scheduled for 6/8/09
Awaiting 2nd opinion on original pathology
***
I like helping people, and I hope when I die they will be able to say about me that I had a positive effect on at least a few people’s lives. One of the ways I like to “give back” is by posting replies to people who are struggling with issues on the thyroid cancer listserv. It makes me feel good to offer a little encouragement or suggestions or perspective to others at different stages of treatment.
Here’s something I posted in response to someone else today:
Re: Help Dealing with Fatigue-->Sherri
--- In Thyca@yahoogroups.com, "laguera1963"
"clean", my Tg is elevated (70 when I went off my synthroid) So the cancer is
back. But this still has nothing to do with being tired?
Sherri, if you have recently been off your Synthroid for stimulated Tg testing
and WBS, you, of course, have been hypo and are probably still hypo. This is the
perfect recipe for fatigue. Do you know what your TSH was the day they did your
Tg blood draw? Just curious.
Don't let anyone else tell you (or imply) you're being lazy--especially those
who have never been through thyca and all its fatigue-inducing testing! Sounds
like you have a lot on your plate, and I feel for you. Sometimes reaching out
here (or at a local thyca support group) helps so much, just to remind you that
others have been in your shoes.
Like you, I have elevated Tg one year after TT and RAI and am preparing for my
2nd RAI treatment.
What do your docs plan to do about your scan-negative, Tg-positive status? What
part of CA are you in? I'm in Orange County.
Hang in there, and let us know if we can offer you anything else in the way of
encouragement.
Sincerely,
Lynn in Orange County, California
Here are two posts I wrote yesterday:
Re: Post-op 1 year-->Libby
--- In Thyca@yahoogroups.com, "libbyobrien56"
Tg/ Tg antibodies, negative. The problem IS......US showed an "ovoid" mass
(don't have the measurements, but not palpable by the endo). Since I didn't
have a post surgery US, who knows when it "showed up"....
now, I'll go HYPO ( no insurance for thyrogen) for 4 weeks and do blood work
then for the next step........! Scan dose radium?, biopsy, NOTHING...........I
hope!!??!! Any thoughts from all you fellow Thycans out there???? (Yes, I'll
do the LID! - thank god red wine is LID compatible!)
Hi, Libby.
Just wanted to say you're not alone!!! (see my siggy below)
I'll be on the LID in a few days, too, so we can lose a few pounds together and
go hypo together. Sweet!
:--)
P.S. I didn't have a post-surgery U/S until 9 months after TT, and it showed
something, too, but nobody can find it since then. (Go figure.) Hang in there
and keep your sense of humor.
Lynn in Orange County, California
+++
Re: ultrasound? MRI? as part of 1 year post-TT follow up Christina
--- In Thyca@yahoogroups.com, "Christina Sunley"
first WBS and will be going the thyrogen route. My endo has not mentioned doing
US or MRI.
Question: Is it common to also have ultrasound or MRI as part of the one-year
follow up? (I had papillary cancer in thyroid and lymph nodes.) Or are
ultrasounds/MRIs only done if something shows up on my WBS, scheduled in a
couple of weeks?
Thanks so much,
Christina
Hi, Christina,
Even if your endo doesn't usually order U/S at this point, I'd push for it if I
were you. The NCCN (National Comprehensive Cancer Network) and ATA (American
Thyroid Association) both recommend routine ultrasound as part of follow-up for
thyroid cancer. The WBS test is great, the stimulated Tg test is great, but U/S
rounds out the picture and gives you and your doc a third source of information
to rely on when assessing whether you are one of the lucky ones who will get a
NED (no evidence of disease) a year after your surgery and RAI. Plus, simply
put, U/S is the only testing method that will actually look inside your neck in
real time and give you an idea what's going on in there (hopefully nothing!).
Here is the reference in the ATA guidlines:
http://www.thyroid.org/professionals/publications/documents/Guidelinesthy2006.pd\
f
on page 17:
Cervical ultrasonography. Cervical ultrasonography is
highly sensitive in the detection of cervical metastases in patients
with differentiated thyroid cancer (208). Cervical
metastases occasionally may be detected by neck ultrasonography
even when TSH-stimulated serum thyroglobulin
levels remain undetectable (200).
R48. After surgery, cervical ultrasound to evaluate the thyroid
bed and central and lateral cervical nodal compartments
should be performed at 6 and 12 months and then annually
for at least 3–5 years, depending on the patients' risk for recurrent
disease and thyroglobulin status—Recommendation B
Best of luck to you!
Lynn in Orange County, California
I’m totally tooting my own horn here, aren’t I? Yep. It’s kind of annoying to me that I will take a situation like my being diagnosed with thyroid cancer and try to make it into a “look how great and helpful and therefore lovable I am” kind if thing. They say that at depression’s roots, there is much narcissism, and that makes sense to me. When you’re a kid and you’re hurting, you become so in tune to your own feelings that when you’re an adult, you’re so used to focusing on how you feel that you become self-centered, in every sense of the phrase. Centered on self, totally focused on your self. This is something that I guess I’d like to change about myself (really? You sound pretty complacent to me—“I guess I’d like to change”), and I’ve asked God to help change me, but I sincerely don’t think I’ve made andy progress. I have to bite my tongue sometimes not to start talking about myself when they are telling me something that’s bothering them or something that’s going on in their lives. I know the Bible advises against this in so many direct and indirect ways. Here’s one:
“Let nothing be done through strife or vainglory; but in lowliness of mind let each esteem other better than themselves. Look not every man on his own things, but every man also on the things of others.”
--Philippians 2:3-4, American King James version
By the way, have we talked about how awesome the book of Philippians is? The basic premise is that you gotta hang tough in tough times, and you gotta keep praising God during trials and tribulations.
How beautiful is this?
“But I would you should understand, brothers, that the things which happened to me have fallen out rather to the furtherance of the gospel; So that my bonds in Christ are manifest in all the palace, and in all other places; And many of the brothers in the Lord, waxing confident by my bonds, are much more bold to speak the word without fear. Some indeed preach Christ even of envy and strife; and some also of good will: The one preach Christ of contention, not sincerely, supposing to add affliction to my bonds: But the other of love, knowing that I am set for the defense of the gospel. What then? notwithstanding, every way, whether in pretense, or in truth, Christ is preached; and I therein do rejoice, yes, and will rejoice. For I know that this shall turn to my salvation through your prayer, and the supply of the Spirit of Jesus Christ, According to my earnest expectation and my hope, that in nothing I shall be ashamed, but that with all boldness, as always, so now also Christ shall be magnified in my body, whether it be by life, or by death.”
--Philippiamns 1:12-20, American King James version
When I read that, I know with certainty that I am nothing more than a vehicle for faith and for spreading faith. That I am nothing more than a possibility of furthering God’s kingdom. I can be in my flesh all the time and be totally unspiritual and stay away fromGod or I can hang close to Him through thick and thin Life feels easy when in the “thick,” and this is usually when I think I don’t need God; “thin” is when I usually go to God, and that’s where I should be all the time.
When I read Philippians 1: 12-20, I also know that I can choose to be God’s servant or I can choose not to back up and look at the big picture. I can choose to let God be glorified (magnified) through me and my actions and my faith and my behavior, or I can choose to do this whole thing (life) by myself, and if there is any (flimsy, thin) glory, take it all for myself.
“Christ shall be magnified in my body,” thyroid cancer cells or not.
Also, here’s an idea of why I got thyroid cancer:
“For to you it is given in the behalf of Christ, not only to believe on him, but also to suffer for his sake.”
--Philippians 1: 29, American King James version
Tuesday, May 19, 2009
Going Off Synthroid for Testing and Treatment
I’ve been off Synthroid for two days. That’s all. And here come the weird symptoms—shaky and hyper in the morning; bad, weird dreams; night sweats. It’s a blast, I gotta tell ya! I just made the appointment to receive my second treatment dose of RAI. I made the appointment for Monday, June 8. I hope my TSH is high enough by then. I think it will be.
I was thinking today how strange it is that my thyroid is all the way across the country in Philadelphia, PA, being analyzed by a pathologist, and I’ve never even been there. My thyroid is more well-traveled than I am!
I’ve been very hyper today, which I’ll take over being lethargic and/or depressed any day. I am in a good mood, and I have a ton of energy, much like several weeks ago when I was off my Synthroid for 30 days. As Pommy said tonight after dinner, “I guess I’ll enjoy it while it lasts.” Yup. Me too.
I was thinking today how strange it is that my thyroid is all the way across the country in Philadelphia, PA, being analyzed by a pathologist, and I’ve never even been there. My thyroid is more well-traveled than I am!
I’ve been very hyper today, which I’ll take over being lethargic and/or depressed any day. I am in a good mood, and I have a ton of energy, much like several weeks ago when I was off my Synthroid for 30 days. As Pommy said tonight after dinner, “I guess I’ll enjoy it while it lasts.” Yup. Me too.
Monday, May 18, 2009
Virginia!
Today the pathologist at the University of Pennsylvania who will be analyzing my cancerous thyroid tissue called me on my cell phone while I was on my way to Costco. How weird is that? There I was, doing my stay-at-home mom stuff (we needed milk and bread and a few other things!), and a well-known thyroid cancer pathologist who has written books about endocrine cancer pathology was calling me on my cell phone. I talked to her with my Bluetooth thingy in my ear. Surreal.
Dr. Virginia LiVolsi was one of those East-Coast-accent-having women who sound realy gruff but who aren’t that different from any normal person, they just sound kind of harsh because of their “accent.” She called to tell me that she needed my slides to complete the pathology report. I explained to her that the slides went missing after Irvine Regional Hospital closed and shipped all their pathology stuff to a warehouse. I told her that the samples I sent her were all that was left of my thyroid tissue after my surgery. She told me it would take a few more days to complete the pathology report (because she would have to have new slides made), and she said her second opinion report would probably be faxed to my doctor’s office Friday or Monday.
While I was fairly productive and got my laundry and Costco shopping done today, I also managed to find time to research Non-Hodgkin’s Lymphoma (NHL), which I think I have. I know that at 42 years old, I may be perimenopausal and might start getting night sweats more and more frequently as I age and get closer to real menopause. Since I also have a swollen area in my right armpit (have had it since November 2008—6 months now), I made the (probably) ridiculous leap to the conclusion that I have NHL.
Here are some facts about me:
1. I’m kind of a hypochondriac in the sense that I’m very sensitive to my body’s every change and feeling.
2. But I have real symptoms sometimes. (!!!)
3. Once in a while, I have a real illness or disease. Thyroid cancer is a good example.
4. I like the attention I get when I’m sick or diagnosed with cancer.
5. This makes me more susceptible to thinking I have a major illness, such as Non-Hodgkin’s Lymphoma. I’m not sure why I chose NHL instead of Hodgkin’s Lymphoma (HL)—quite possibly because it shares an acronym with the National Hockey League (NHL), of which my husband is a big fan these days.
I know this is a bizarre nonsequitur, but…
Here are some things that made today enjoyable:
1. An old lady in Costco was wearing an awesome outfit: a heavily starched long-sleeved blue button-down man shirt tucked into a charcoal gray ankle-length cotton skirt, with cuffed jeans underneath, black canvas China-doll shoes with embroidered flowers on top, and a red lanyard around her neck.
2. I went to Quest Diagnostics this morning to have my blood drawn (checking TSH and free T4). I happened to sit next to a gal who looked to be in her late 20s or early 30s, very professionally dressed, nicely made up, and I got to chatting with her after she sighed deeply when other people got called in before her. I suggested she make an appointment next time because I had found that cuts the wait time in half. She was basically a funny, not-too-bitter person who just happened to be a little pissed off that she had to wait so long to get her blood drawn. But the comical part was that she said, “Son of a bitch!” pretty loudly twice in our conversation. One time was when she was describing how her veins “disappear” when the phlebotomist tries to pin them down for blood, and I can’t remember what the context of the second “son of a bitch” was, but it was pretty loud, and it was pretty stinkin funny coming out of this professional-looking, otherwise soft-spoken woman.
Dr. Virginia LiVolsi was one of those East-Coast-accent-having women who sound realy gruff but who aren’t that different from any normal person, they just sound kind of harsh because of their “accent.” She called to tell me that she needed my slides to complete the pathology report. I explained to her that the slides went missing after Irvine Regional Hospital closed and shipped all their pathology stuff to a warehouse. I told her that the samples I sent her were all that was left of my thyroid tissue after my surgery. She told me it would take a few more days to complete the pathology report (because she would have to have new slides made), and she said her second opinion report would probably be faxed to my doctor’s office Friday or Monday.
While I was fairly productive and got my laundry and Costco shopping done today, I also managed to find time to research Non-Hodgkin’s Lymphoma (NHL), which I think I have. I know that at 42 years old, I may be perimenopausal and might start getting night sweats more and more frequently as I age and get closer to real menopause. Since I also have a swollen area in my right armpit (have had it since November 2008—6 months now), I made the (probably) ridiculous leap to the conclusion that I have NHL.
Here are some facts about me:
1. I’m kind of a hypochondriac in the sense that I’m very sensitive to my body’s every change and feeling.
2. But I have real symptoms sometimes. (!!!)
3. Once in a while, I have a real illness or disease. Thyroid cancer is a good example.
4. I like the attention I get when I’m sick or diagnosed with cancer.
5. This makes me more susceptible to thinking I have a major illness, such as Non-Hodgkin’s Lymphoma. I’m not sure why I chose NHL instead of Hodgkin’s Lymphoma (HL)—quite possibly because it shares an acronym with the National Hockey League (NHL), of which my husband is a big fan these days.
I know this is a bizarre nonsequitur, but…
Here are some things that made today enjoyable:
1. An old lady in Costco was wearing an awesome outfit: a heavily starched long-sleeved blue button-down man shirt tucked into a charcoal gray ankle-length cotton skirt, with cuffed jeans underneath, black canvas China-doll shoes with embroidered flowers on top, and a red lanyard around her neck.
2. I went to Quest Diagnostics this morning to have my blood drawn (checking TSH and free T4). I happened to sit next to a gal who looked to be in her late 20s or early 30s, very professionally dressed, nicely made up, and I got to chatting with her after she sighed deeply when other people got called in before her. I suggested she make an appointment next time because I had found that cuts the wait time in half. She was basically a funny, not-too-bitter person who just happened to be a little pissed off that she had to wait so long to get her blood drawn. But the comical part was that she said, “Son of a bitch!” pretty loudly twice in our conversation. One time was when she was describing how her veins “disappear” when the phlebotomist tries to pin them down for blood, and I can’t remember what the context of the second “son of a bitch” was, but it was pretty loud, and it was pretty stinkin funny coming out of this professional-looking, otherwise soft-spoken woman.
Sunday, May 17, 2009
Feelin' Poorly
I’ve been in a bad mood all day today. I can’t stand myself! Gone is the feeling of peace. Gone is the feeling that God is here for me. I feel empty and alone and back to my former hair-trigger-temper, irrational self. But I will say that this absolutely sucks.
Where am I on this thyroid cancer rollercoaster? I’m waiting for the second opinion on my original pathology report. It wasn’t done as of Friday, so I’m expecting it to be done next week. After that, I’ll probably get another radioactive iodine treatment dose. So in preparation for that, I stopped taking my Synthroid this morning. In order to get the RAI tx (this is shorthand for “treatment”) before Jack is out of school for summer, I’d need to get the dose the week of June 8. This would put me in isolation June 8-15-ish and sorta back to normal by June 18, which is Jack’s last day of school. I don’t really know how it would work to have to do the RAI while Jack is out of school for summer. He’d have to be somewhere else during the day--not here at home, where a radioactive me will be holed up in the master bedroom. And that would be a bummer, so I want to get ’er done before school’s out.
Everything has been different since I went back on my Synthroid and it started to build up in my system again. I was only on it for 4 weeks, but it had already gotten me back to that familiar hyperthyroid irritability I hate so much. I’m glad I went off it today, because I miss that calm feeling I had while I was hypo. Hopefully it will kick back in soon. The bummer is I can’t be hypo for long. I have to be kept hyperthyroid as part of my thyca recurrence prevention plan.
Where am I on this thyroid cancer rollercoaster? I’m waiting for the second opinion on my original pathology report. It wasn’t done as of Friday, so I’m expecting it to be done next week. After that, I’ll probably get another radioactive iodine treatment dose. So in preparation for that, I stopped taking my Synthroid this morning. In order to get the RAI tx (this is shorthand for “treatment”) before Jack is out of school for summer, I’d need to get the dose the week of June 8. This would put me in isolation June 8-15-ish and sorta back to normal by June 18, which is Jack’s last day of school. I don’t really know how it would work to have to do the RAI while Jack is out of school for summer. He’d have to be somewhere else during the day--not here at home, where a radioactive me will be holed up in the master bedroom. And that would be a bummer, so I want to get ’er done before school’s out.
Everything has been different since I went back on my Synthroid and it started to build up in my system again. I was only on it for 4 weeks, but it had already gotten me back to that familiar hyperthyroid irritability I hate so much. I’m glad I went off it today, because I miss that calm feeling I had while I was hypo. Hopefully it will kick back in soon. The bummer is I can’t be hypo for long. I have to be kept hyperthyroid as part of my thyca recurrence prevention plan.
Monday, May 11, 2009
Hypo To Hyper
Yesterday was Mother’s Day.
I felt different yesterday—like there was a shift in gears on my trip from hypo to hyper. I was more agitated, less calm, less easy-going, hotter, sweatier, more anxious, more tense, and more stressed. I think all the great side effects of being slightly hypo are starting to disappear, and that sucks! And it’s extra disconcerting to feel a major change from one day to the next.
I went to church yesterday morning with Jack and Brendan, and the pastor read John 15:1-8.
“I am the true vine, and my Father is the farmer. Every branch in me that bears not fruit he takes away: and every branch that bears fruit, he purges it, that it may bring forth more fruit. Now you are clean through the word which I have spoken to you. Abide in me, and I in you. As the branch cannot bear fruit of itself, except it abide in the vine; no more can you, except you abide in me. I am the vine, you are the branches: He that stays in me, and I in him, the same brings forth much fruit: for without me you can do nothing. If a man abide not in me, he is cast forth as a branch, and is withered; and men gather them, and cast them into the fire, and they are burned. If you abide in me, and my words abide in you, you shall ask what you will, and it shall be done to you. Herein is my Father glorified, that you bear much fruit; so shall you be my disciples.”
--John 15: 1-8, American King James version
Today, a day later, I can’t remember exactly what in that spoke to me yesterday. Something about that passage got to me. I can’t remember what, though. I have a headache today and feel very tired. I took a nap before I picked up Jack at school this afternoon. Pommy is home sick today with a cold. Jack had a cold last Thursday, so maybe I’m just fighting off a little virus.
I felt different yesterday—like there was a shift in gears on my trip from hypo to hyper. I was more agitated, less calm, less easy-going, hotter, sweatier, more anxious, more tense, and more stressed. I think all the great side effects of being slightly hypo are starting to disappear, and that sucks! And it’s extra disconcerting to feel a major change from one day to the next.
I went to church yesterday morning with Jack and Brendan, and the pastor read John 15:1-8.
“I am the true vine, and my Father is the farmer. Every branch in me that bears not fruit he takes away: and every branch that bears fruit, he purges it, that it may bring forth more fruit. Now you are clean through the word which I have spoken to you. Abide in me, and I in you. As the branch cannot bear fruit of itself, except it abide in the vine; no more can you, except you abide in me. I am the vine, you are the branches: He that stays in me, and I in him, the same brings forth much fruit: for without me you can do nothing. If a man abide not in me, he is cast forth as a branch, and is withered; and men gather them, and cast them into the fire, and they are burned. If you abide in me, and my words abide in you, you shall ask what you will, and it shall be done to you. Herein is my Father glorified, that you bear much fruit; so shall you be my disciples.”
--John 15: 1-8, American King James version
Today, a day later, I can’t remember exactly what in that spoke to me yesterday. Something about that passage got to me. I can’t remember what, though. I have a headache today and feel very tired. I took a nap before I picked up Jack at school this afternoon. Pommy is home sick today with a cold. Jack had a cold last Thursday, so maybe I’m just fighting off a little virus.
Tuesday, May 5, 2009
Ouch
Today is my third day in a row with a migraine. I gave myself one shot of Imitrex Sunday, two shots yesterday and one shot so far today. My paranoid side wonders if it has to do with cancer growth in my neck because the migraine seems to be emanating from there. Although I have great faith in God and know He is here for me, I have had a lot of thoughts lately about the “what if”s. (What if I have more extensive cancer than is known? What if I have metastases to my lungs? They are often inoperable. What if I have non-Hodgkin’s lymphoma? I don’t know why I wonder this, but since I noticed a slight, sometimes-uncomfortable swelling in my right armpit last November [2008], I’ve wondered about some kind of lymphoma. I don’t even know why this entered my mind—I have no idea what the symptoms are, and I don’t think I’ve been anal enough to research it on the Internet yet, but it has been in my mind.) All the what ifs are probably a normal response to knowing that I have persistent cancer at this very moment. People probably typically feel this way if they get a cancer diagnosis—or are reminded of their fallibility with a “persistent cancer” re-diagnosis.
That’s the weird thing, though, and something I want to share with people: Knowing I have an active cancer right now has resulted in tons of positive changes. That knowledge has had the following effects on me:
1. I care more about people and my relationships with them. Really, that’s the most important thing in life. All the other stuff is irrelevant.
2. I want to do more nice things for the people who mean the most to me.
3. I don’t want to waste time doing things that are not truly necessary or that do not contribute to the world being a better place.
4. I want to write this book and leave it for my kids…to show them how God has proved His existence to me, changed me, changed our family and had a positive effect on all our lives…all due to thyroid cancer.
5. I want to invest more time in relationships with people who really have my back.
6. I’m listening to music more.
7. I’m living life more fully.
8. I’m trying to have a softer personality. I’m getting along much better with Pommy, the kids, and everybody.
9. I’m trying harder not to sweat the small stuff.
10. I’m talking to people more when I’m out—cashiers, other customers in Costco, just the faces you pass on a day-to-day basis and which are so easy to ignore, but life feels so much richer when you take the time to talk to people.
11. I’m living life more fearlessly.
12. I speak my mind more (probably to the chagrin of some).
13. I’m not being so self-conscious; I don’t care so much (or at all) what people think of me.
14. I feel forgiven and deserving.
The last thing—feeling forgiven and deserving—is huge for me. Since I came to the Lord in 2003, I have known that He forgives me for everything, but I finally feel worthy of being forgiven…like I can let myself off the hook, stop punishing myself for all the wrongs I’ve done in this life, and once and for all accept His forgiveness because:
• He shed his blood on the cross for me and my sins
• I’m not so bad after all.
For years and years, I have shortchanged myself in so many little and big ways. Here are a few examples, ranging from the minuscule to the monstrous: I wanted a wooden spoon for years, and I would pick one up in Target, look at it, ponder the less-than-$5 price, and think “I don’t need this,” and put it back, only to do the same thing the next time I was in Target. Finally, one of my best girlfriends gave me a slew of cooking and baking equipment for my wedding, and among the things she included was a green-handled wooden spoon. I love that thing and I still use it today, almost 10 years later. (When it wears out or breaks, I will replace it. Why? Because I, Lynn Pomije, deserve to own a wooden spoon.)
For years, in restaurants, I have robbed myself of beverages. I’ll let the kids order drinks, Pommy gets a drink, and I think “Lynn, just have water,” and most of the time, I settle for the water. It’s a money-saving thing (Really? Saving $1 to $2 is that important?), and it’s a “deserving” thing. Everybody else deserves a drink, but I don’t. So dumb. Lately God has been reminding me that I matter, that I count, and that translates into me deserving a Diet Coke with dinner! And a wooden spoon for cooking!
That’s the weird thing, though, and something I want to share with people: Knowing I have an active cancer right now has resulted in tons of positive changes. That knowledge has had the following effects on me:
1. I care more about people and my relationships with them. Really, that’s the most important thing in life. All the other stuff is irrelevant.
2. I want to do more nice things for the people who mean the most to me.
3. I don’t want to waste time doing things that are not truly necessary or that do not contribute to the world being a better place.
4. I want to write this book and leave it for my kids…to show them how God has proved His existence to me, changed me, changed our family and had a positive effect on all our lives…all due to thyroid cancer.
5. I want to invest more time in relationships with people who really have my back.
6. I’m listening to music more.
7. I’m living life more fully.
8. I’m trying to have a softer personality. I’m getting along much better with Pommy, the kids, and everybody.
9. I’m trying harder not to sweat the small stuff.
10. I’m talking to people more when I’m out—cashiers, other customers in Costco, just the faces you pass on a day-to-day basis and which are so easy to ignore, but life feels so much richer when you take the time to talk to people.
11. I’m living life more fearlessly.
12. I speak my mind more (probably to the chagrin of some).
13. I’m not being so self-conscious; I don’t care so much (or at all) what people think of me.
14. I feel forgiven and deserving.
The last thing—feeling forgiven and deserving—is huge for me. Since I came to the Lord in 2003, I have known that He forgives me for everything, but I finally feel worthy of being forgiven…like I can let myself off the hook, stop punishing myself for all the wrongs I’ve done in this life, and once and for all accept His forgiveness because:
• He shed his blood on the cross for me and my sins
• I’m not so bad after all.
For years and years, I have shortchanged myself in so many little and big ways. Here are a few examples, ranging from the minuscule to the monstrous: I wanted a wooden spoon for years, and I would pick one up in Target, look at it, ponder the less-than-$5 price, and think “I don’t need this,” and put it back, only to do the same thing the next time I was in Target. Finally, one of my best girlfriends gave me a slew of cooking and baking equipment for my wedding, and among the things she included was a green-handled wooden spoon. I love that thing and I still use it today, almost 10 years later. (When it wears out or breaks, I will replace it. Why? Because I, Lynn Pomije, deserve to own a wooden spoon.)
For years, in restaurants, I have robbed myself of beverages. I’ll let the kids order drinks, Pommy gets a drink, and I think “Lynn, just have water,” and most of the time, I settle for the water. It’s a money-saving thing (Really? Saving $1 to $2 is that important?), and it’s a “deserving” thing. Everybody else deserves a drink, but I don’t. So dumb. Lately God has been reminding me that I matter, that I count, and that translates into me deserving a Diet Coke with dinner! And a wooden spoon for cooking!
Monday, May 4, 2009
Another Radioactive Iodine Treatment?
I saw my endo today. She won't order PET/CT to look further for the source of the Tg (she's pretty insistent about this, which is annoying, because I'm under the impression that's the most logical next step).
My endo is pro-another radioactive iodine treatment dose (the kind where I'm isolated for 7 days), but without knowing exactly where the Tg-making tissue is and having an idea of its dimensions, I feel uncomfortable moving forward with another round of RAI. I had 5 lymph nodes removed last Feb. in initial surgery, and all 5 were malignant. So chances are there are more malignant lymph nodes, although none are currently showing themselves to be enlarged and/or suspicious. Humpf.
Endo is referring me to a general surgeon for consultation, but it's not the
expert thyroid surgeon I want (I'm on HMO and endo says she cannot refer me to
the awesome USC out-of-network surgeon since she has referred pts. to this in-network general surgeon for same type of surgery--endo says asking her to refer me to
out-of-network surgeon is asking her to do the impossible), and in the end, my
endo thinks I should just have another RAI treatment, anyway, and I'm sure she's
expecting me to meet with the surgeon, decide to do RAI and come back to her
(endo) for RAI.
Incidentally, while all this has been going on, I am paying out of pocket to get an
expert second opinion on my original pathology so I can know for sure whether my original diagnosis of papillary carcinoma (no variant) was accurate and move forward with treatment more confidently. It will probably take several weeks to get the second opinion (just FedEx'd the package with my tissue samples today...it’s going to Dr. Virginia LiVolsi, an expert in thyroid cancer pathology, at the Hospital of the University of Pennsylvania).
My endo is pro-another radioactive iodine treatment dose (the kind where I'm isolated for 7 days), but without knowing exactly where the Tg-making tissue is and having an idea of its dimensions, I feel uncomfortable moving forward with another round of RAI. I had 5 lymph nodes removed last Feb. in initial surgery, and all 5 were malignant. So chances are there are more malignant lymph nodes, although none are currently showing themselves to be enlarged and/or suspicious. Humpf.
Endo is referring me to a general surgeon for consultation, but it's not the
expert thyroid surgeon I want (I'm on HMO and endo says she cannot refer me to
the awesome USC out-of-network surgeon since she has referred pts. to this in-network general surgeon for same type of surgery--endo says asking her to refer me to
out-of-network surgeon is asking her to do the impossible), and in the end, my
endo thinks I should just have another RAI treatment, anyway, and I'm sure she's
expecting me to meet with the surgeon, decide to do RAI and come back to her
(endo) for RAI.
Incidentally, while all this has been going on, I am paying out of pocket to get an
expert second opinion on my original pathology so I can know for sure whether my original diagnosis of papillary carcinoma (no variant) was accurate and move forward with treatment more confidently. It will probably take several weeks to get the second opinion (just FedEx'd the package with my tissue samples today...it’s going to Dr. Virginia LiVolsi, an expert in thyroid cancer pathology, at the Hospital of the University of Pennsylvania).
Sunday, May 3, 2009
Cancer is a Systemic Disease
--- On Thu, 4/30/09, lpomije
22--what next?
To: thyroidcancerhelp@yahoogroups.com
Date: Thursday, April 30, 2009, 3:06 PM
Dear Dr. Ain,
My stats:-Nov. 2007 neck ultrasound reveals 3 nodules with
calcifications -Jan. 2008 FNA inconclusive but suspicious for follicular
neoplasm -Near-total thyroidectomy Feb. 2008 due to intraoperative
papillary thyca diagnosis -5/5 lymph nodes removed positive for
papillary thyca -150 mCi RAI March 2008 -April 2009 with a TSH of 60.27,
Tg is 22, no Tg antibodies -I-123 full-hypo and LID prep WBS April 2009
shows linear area of uptake in right surgical thyroid bed, measuring
about 2 cm long -FNA was scheduled for this morning but was cancelled
after pre-FNA ultrasound failed to show any thyroid tissue or enlarged
nodes or anything suspicious whatsoever to biopsy. What now? Chest CT?
PET scan? Empiric RAI tx? Surgery?
I've read all the ATA guidelines and NCCN guidelines and would like to
know what your approach to a situation like this would be.
Thank you, Dr. Ain. With great respect, Lynn in California
Subject: Persistent thyroglobulin equals persistent tumor
Dear TCH Members,
Sometimes physicians have "tunnel vision". They forget that thyroid cancer is a
systemic disease (involving the entire body). They focus on the neck and avoid
evaluating the remainder of the body for metastatic tumor. Elevated
thyroglobulin levels mean that a thyroid cancer patient (after previous
thyroidectomy and radioiodine therapy) has persistent or metastatic disease.
Such tumor is either microscopic (in deposits too small to be detected by
diagnostic studies) or sufficiently macroscopic to be able to be detected. This
can only be determined by a conscientious and comprehensive effort to search for
tumor (PET scans, CT scans, ultrasounds, etc.). Sometimes, if iodine-non-avid
disease has not been established as present, an empiric radioiodine therapy
(with excellent hypothyroid and low iodine diet preparation) is warranted to see
if the post-therapy whole body scan is positive and the thyroglobulin diminishes
in response. If such an approach
proves unfruitful, then it is important to pursue evidence for macroscopic
tumor.
**************PLEASE BE ADVISED*********************
THE INFORMATION CONTAINED IN THIS COMMUNICATION IS INTENDED
FOR EDUCATIONAL PURPOSES ONLY. IT IS NOT INTENDED, NOR SHOULD
IT BE CONSTRUED, AS SPECIFIC MEDICAL ADVICE OR DIRECTIONS. ANY
PERSON VIEWING THIS INFORMATION IS ADVISED TO CONSULT THEIR OWN
PHYSICIAN(S) ABOUT ANY MATTER REGARDING THEIR MEDICAL CARE.
************************************************
Kenneth B. Ain, M.D.
Professor of Medicine & The Carmen L. Buck Chair of Oncology Research
Director, Thyroid Oncology Program
Division of Endocrinology & Molecular Medicine
Department of Internal Medicine, Room MN524
University of Kentucky Medical Center, 800 Rose Street, Lexington, KY
40536-0298
& Director, Thyroid Cancer Research Lab., Veterans Affairs Med. Cntr, Lexington,
KY
22--what next?
To: thyroidcancerhelp@yahoogroups.com
Date: Thursday, April 30, 2009, 3:06 PM
Dear Dr. Ain,
My stats:-Nov. 2007 neck ultrasound reveals 3 nodules with
calcifications -Jan. 2008 FNA inconclusive but suspicious for follicular
neoplasm -Near-total thyroidectomy Feb. 2008 due to intraoperative
papillary thyca diagnosis -5/5 lymph nodes removed positive for
papillary thyca -150 mCi RAI March 2008 -April 2009 with a TSH of 60.27,
Tg is 22, no Tg antibodies -I-123 full-hypo and LID prep WBS April 2009
shows linear area of uptake in right surgical thyroid bed, measuring
about 2 cm long -FNA was scheduled for this morning but was cancelled
after pre-FNA ultrasound failed to show any thyroid tissue or enlarged
nodes or anything suspicious whatsoever to biopsy. What now? Chest CT?
PET scan? Empiric RAI tx? Surgery?
I've read all the ATA guidelines and NCCN guidelines and would like to
know what your approach to a situation like this would be.
Thank you, Dr. Ain. With great respect, Lynn in California
Subject: Persistent thyroglobulin equals persistent tumor
Dear TCH Members,
Sometimes physicians have "tunnel vision". They forget that thyroid cancer is a
systemic disease (involving the entire body). They focus on the neck and avoid
evaluating the remainder of the body for metastatic tumor. Elevated
thyroglobulin levels mean that a thyroid cancer patient (after previous
thyroidectomy and radioiodine therapy) has persistent or metastatic disease.
Such tumor is either microscopic (in deposits too small to be detected by
diagnostic studies) or sufficiently macroscopic to be able to be detected. This
can only be determined by a conscientious and comprehensive effort to search for
tumor (PET scans, CT scans, ultrasounds, etc.). Sometimes, if iodine-non-avid
disease has not been established as present, an empiric radioiodine therapy
(with excellent hypothyroid and low iodine diet preparation) is warranted to see
if the post-therapy whole body scan is positive and the thyroglobulin diminishes
in response. If such an approach
proves unfruitful, then it is important to pursue evidence for macroscopic
tumor.
**************PLEASE BE ADVISED*********************
THE INFORMATION CONTAINED IN THIS COMMUNICATION IS INTENDED
FOR EDUCATIONAL PURPOSES ONLY. IT IS NOT INTENDED, NOR SHOULD
IT BE CONSTRUED, AS SPECIFIC MEDICAL ADVICE OR DIRECTIONS. ANY
PERSON VIEWING THIS INFORMATION IS ADVISED TO CONSULT THEIR OWN
PHYSICIAN(S) ABOUT ANY MATTER REGARDING THEIR MEDICAL CARE.
************************************************
Kenneth B. Ain, M.D.
Professor of Medicine & The Carmen L. Buck Chair of Oncology Research
Director, Thyroid Oncology Program
Division of Endocrinology & Molecular Medicine
Department of Internal Medicine, Room MN524
University of Kentucky Medical Center, 800 Rose Street, Lexington, KY
40536-0298
& Director, Thyroid Cancer Research Lab., Veterans Affairs Med. Cntr, Lexington,
KY
Saturday, May 2, 2009
Proverbs 3: 5-6
I keep waking up in the middle of the night—a holdover symptom of being hypothyroid for a month that I can’t seem to shake, even now that I’ve been back on Synthroid for 2 weeks now. Sometimes I watch an episode of “House” or the third period of the Ducks game from the night before or something that’s been Tivo-d. Last night I watched an entire movie I’ve always wanted to see—“50 First Dates” with Adam Sandler and Drew Barrymore. A few nights ago—once again, in the middle of the night, when I woke up and couldn’t get back to sleep--I discovered this gospel music channel and I saw a video of a song called “Held” by Natalie Grant, and I just downloaded it from iTunes because it is so beautiful. Here are the lyrics:
Held
Performed by Natalie Grant
Written by Christa Nichole Wells
Lyrics © Warner/Chappell Music, Inc.
Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would
Take a child from his mother while she prays
Is appalling.
Who told us we'd be rescued?
What has changed and why should we be saved from nightmares?
We're asking why this happens
To us who have died to live?
It's unfair.
Chorus:
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
This hand is bitterness.
We want to taste it, let the hatred know our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
I cannot help but think that God is preparing me for the future—that He is growing my faith during this relatively small trial in preparation for some much larger sorrow in the future. Because I have a long history of being dramatic, loving the dramatic, inviting chaos into my life or, failing that, creating it, I wonder if this suspicion is me—my flesh—being overly dramatic or whether God is preparing me for the future.
Whatever He’s doing, it’s all for His glory. I know that now.
I went to lunch today with 5 other gals from the alto section of the choir at church, and for the first time in a long time, I didn’t get nervous and self-conscious and weird about meeting with a group of ladies. Don’t ask me why—I don’t know why!—but that kind of thing has always made me SOOOO anxious and tense, even if I liked all the ladies. I feel different now. I feel God changing me. I feel God working in my life. I feel God working on my personality. I feel more free. I feel more open to His will. I feel more open in general.
I feel happier.
Several years ago, when I was going through what was then the most heart-wrenching emotional time I’d yet experienced with my then-11-year-old son and his dad, my ex-husband, I relied on this verse every day:
“Trust in the Lord with all your heart; and lean not to your own understanding.
In all your ways acknowledge him, and he shall direct your paths.”
--Proverbs 3: 5-6, American King James version
The verse didn’t fail me then, and it isn’t failing me now. The more I trust in the Lord, the more He directs my paths. The less I try to control things, and consequently the more I let Him control things, the easier everything gets.
In church this morning:
“Therefore I will look to the LORD; I will wait for the God of my salvation: my God will hear me.”
--Micah 7:7, American King James version
Held
Performed by Natalie Grant
Written by Christa Nichole Wells
Lyrics © Warner/Chappell Music, Inc.
Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would
Take a child from his mother while she prays
Is appalling.
Who told us we'd be rescued?
What has changed and why should we be saved from nightmares?
We're asking why this happens
To us who have died to live?
It's unfair.
Chorus:
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
This hand is bitterness.
We want to taste it, let the hatred know our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
I cannot help but think that God is preparing me for the future—that He is growing my faith during this relatively small trial in preparation for some much larger sorrow in the future. Because I have a long history of being dramatic, loving the dramatic, inviting chaos into my life or, failing that, creating it, I wonder if this suspicion is me—my flesh—being overly dramatic or whether God is preparing me for the future.
Whatever He’s doing, it’s all for His glory. I know that now.
I went to lunch today with 5 other gals from the alto section of the choir at church, and for the first time in a long time, I didn’t get nervous and self-conscious and weird about meeting with a group of ladies. Don’t ask me why—I don’t know why!—but that kind of thing has always made me SOOOO anxious and tense, even if I liked all the ladies. I feel different now. I feel God changing me. I feel God working in my life. I feel God working on my personality. I feel more free. I feel more open to His will. I feel more open in general.
I feel happier.
Several years ago, when I was going through what was then the most heart-wrenching emotional time I’d yet experienced with my then-11-year-old son and his dad, my ex-husband, I relied on this verse every day:
“Trust in the Lord with all your heart; and lean not to your own understanding.
In all your ways acknowledge him, and he shall direct your paths.”
--Proverbs 3: 5-6, American King James version
The verse didn’t fail me then, and it isn’t failing me now. The more I trust in the Lord, the more He directs my paths. The less I try to control things, and consequently the more I let Him control things, the easier everything gets.
In church this morning:
“Therefore I will look to the LORD; I will wait for the God of my salvation: my God will hear me.”
--Micah 7:7, American King James version
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