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
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