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21-year-old suspected to have thyroid cancer...questions (long)

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Old 12-27-2003, 04:23 PM   #1
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Join Date: Dec 2003
Location: Anchorage, AK
Posts: 16
alaskaflygirl HB User
21-year-old suspected to have thyroid cancer...questions (long)

Hi folks,

I discovered this board while doing yet more research on follicular thyroid carcinoma. I'll give a brief history.

Ultrasound, 2000: Small simple, fluid-filled cysts.
Ultrasound, 2000 (six months later): Presence of 2mm complex nodule
Ultrasound, 2001 (six months later): Nodule grew to 7mm
Ultrasound, 2003: Nodule 1.4cm x 1.6cm, extreme vascular development
Biopsy, core, 2003: Atypical cells, large amounts of follicular cells, some Hurthle
Biopsy, FNA, 2003: Atypical cells, all follicular

Needless to say, my endo is demanding surgery. In the words of the endo who biopsied me, it would be "suprising if it ISN'T malignant". For the sake of self-sufficiency, I've done all the research I can to prepare myself if it is indeed cancer.

I'm 21, female, thin, and have also been diagnosed with polycystic ovarian disease, endometriosis, aterial-venous malformation of the intestines, and gallbladder disease (which was removed). I've undergone five operations, all of which were major abdominal/pelvic, so the thought thyroid sugery itself doesn't bother me at all. I am an only child, my mother died of breast cancer 3 years ago, and my father committed suicide shortly thereafter.

I'm not looking for sympathy or pity, just recommendations on what to do. I'm completely on the fence regarding if I should undergo a partial or total thyroidectomy. I also really don't want to go through RAI therapy- if you've been through it, is it worth it? I've tried taking Sinthroid to shrink the nodule, to no avail, and I get extremely ill on even the tiniest dose (instant weight loss, overwhelming fatigue, dizziness). What other hormone-replacement options are there?

I understand the impact of a total thyroidectomy on my system, which is my only hesitance to pursue that radical of a procedure. Because I have no family, I'm having to rely on myself. I have a rather high-paying job (particularly for someone my age) and a 4.0 GPA at college that is hard enough to maintain between work and other medical problems. From reading others' posts, I'm concerned that this surgery isn't the cakewalk I expected, and that I will have to make sacrifices in other areas of my life that I'm very reluctant to.

If you've been in this situation before:

- Was the surgery/treatment better or worse than you originally expected?
- Do you regret undergoing RAI therapy?
- Why does a patient have to wait 6 weeks before undergoing an RAI scan?
- How long are you generally in the hospital during/after surgery?

Thoughts? Opinions?

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Old 12-27-2003, 04:29 PM   #2
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Join Date: Jan 2003
Location: Michigan
Posts: 122
stardust39 HB User
Re: 21-year-old suspected to have thyroid cancer...questions (long)

Here is a link too alot of Thyroid storys it is posted at the top of this thread ..[url][/url] I have been through Thyroid cancer and had a total(May 2002)... Also RAI,(June 2002) The people on here are wonderful and will help you through what ever may lay ahead... God Bless,

Old 12-27-2003, 06:18 PM   #3
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Join Date: May 2003
Posts: 1,154
hilery79 HB User
Re: 21-year-old suspected to have thyroid cancer...questions (long)

Originally Posted by alaskaflygirl
If you've been in this situation before:

- Was the surgery/treatment better or worse than you originally expected?
- Do you regret undergoing RAI therapy?
- Why does a patient have to wait 6 weeks before undergoing an RAI scan?
- How long are you generally in the hospital during/after surgery?

Thoughts? Opinions?
I was diagnosed with Follicular thyroid carcinoma in July. My nodule was 2.2cm.
I ended up having 2 surgeries because my frozen section was inconclusive with my first surgery. My first surgery wasn't bad at all. My surgeon even let me come home the same day. My 2nd surgery(2 weeks later) was a little worse. I was still healing from the first surgery, so I was in quite a bit more pain this time. I stayed in the hospital 2 days after my 2nd surgery.

I had my RAI treatment in August. I have no regrets about my treatment. It was definatly worth it to end up with a clean scan. I am still having some after effects from the treatment, but it isn't anything I can't deal with. My Parotid (salivary) glands have been very swollen off and on since Aug.

You have to wait around 6 weeks before having RAI because you need to be very hypo before you have this treatment. So, you have to be off any thyroid meds for about 6 weeks. I also did the Low Iodine Diet during the last couple weeks before my treatment. You might want to look into this. There is a lot of info about it on the Thyca web site.

There are a lot of great people on this board who have been through this. I am very thankful for all of the help and support I received while I was going through my surgeries and treatment. I'm sure you will receive the same wonderful support.

Take care,

Last edited by hilery79; 12-27-2003 at 06:19 PM.

Old 12-27-2003, 09:06 PM   #4
Join Date: Sep 2003
Posts: 74
cuello HB User
Re: 21-year-old suspected to have thyroid cancer...questions (long)

If you've been in this situation before:

- Was the surgery/treatment better or worse than you originally expected?
- Do you regret undergoing RAI therapy?
- Why does a patient have to wait 6 weeks before undergoing an RAI scan?
- How long are you generally in the hospital during/after surgery?

Thoughts? Opinions?[/QUOTE]

Hi, just wanted to give you my perspective to help balance some of the tougher post-op situations you may have heard about. I am 34 and was diagnosed with follicular carcinoma in Sept. I had a total thyroidectomy followed by RAI in late Oct. I had a basically uneventful post op experience. I had surgery at 6p on a Fri and was out the next morning. My RAI was done on an outpatient basis and this too was basically uneventful. I lost my sense of taste somewhat for a two week period post treatment but that resolved itself.

I unfortunately cannot give you a longer followup report b/c I haven't seen my endo yet post treatment. My appt is set for Jan 16th and I will have bloodwork beforehand to get a better understanding of my levels including thyroglobulin to get a better sense of where I'm at treatment-wise.

I know that everyone experiences this differently but just on a positive note, there is the possibility of getting through surgery and RAI w/o too much disruption in your daily routine. I should also mention that I'm on .125 of Synthroid and I can't really say that I feel any differently than I did pre-surgery.

Treatment for follicular carcinoma you will find is rather standardized--total thyroidectomy followed by RAI. Keep asking questions but also make sure you are in the hands of a good endo to help steer you in the right direction and make the right decision for you. Best of luck~

Old 12-28-2003, 02:05 AM   #5
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Join Date: Jul 2003
Location: Saskatchewan, Canada
Posts: 548
bluesnowflake HB User
Re: 21-year-old suspected to have thyroid cancer...questions (long)

You did not want sympathy or pity, but I do want to commend you on an outstanding success as a person! I used to be 21 in fact only a few weeks old at being 22. I am also in school, good grades, and have a load of health problems. Nothing near the amount of yours, I am truly inspired by what you gone through, espcially in the absence of family. I am sure I speak for most people on here, but I hope to become part of your online family and we will support and answer questions every step (and misstep) of the way.

I have been diagnosed with papillary carcinoma of the thyroid. I underwent a partial thyroidectomy in August (this was based on my decision to not have a biospy every 6 months to see if my small but growing nodules were cancerous, lucky for me, they were actually cancerous and we caught it very early). I was in the hospital for two nights, they said it was a difficult surgery because of my short neck. My incision was infected, so it was quite a long recovery for me and I was fully recovered after about 5 weeks. I haven't heard of anyone else having this long of a recovery period. Normally its anywhere from 5 days to 2 weeks. I have been on thyroids meds since I was 8, so unexpectedly, I became a typical case of hypo post surgery. Before that, I did not experience most of the symptoms of the disease. I started losing hair, becoming exhausted for no reason, colder and drier than ice, itchy skin, you name it. However, because of the cancerous report, I need to undergo another surgery on the 7th of Jan to remove the rest of my thyroid. I would have had it done earlier, but contraversy was high among my doctors, school was on the go, and my health was not up to code to be operated on. My life will be put on hold until my thyroid levels and my body are functioning properly. I expect this to be in March. I will be undergoing RAI in February. I need to also be off meds for 6 weeks, even though I take cytomel and not the typical synthroid. (it has a shorter life span within your body). I have come to the conclusion that 6 weeks is the set amount of time for your body to finish processing any thyroid meds and existence of pre-surgery thyroid levels.

Thats my story, I hope it broadens some answers and won't make any decisions harder. I know being where we are in life and having health problems is a huge pain in the butt. Personally, I am sick of it and would like to see some years go by with less doctor visits than (insert something you use weekly here, hmm, toilet paper?). I just hope this journey leads me to astonishing meadows and accomplished dreams. This board and the people on it have become a huge part of my journey, I can't imagine dawdling along without them. If I was in your postion, and even if it was not cancerous, I would want a total thyroidectomy. I only say this because you have been through so much, I would hate to see more things happen to something that does not have to be there. I do not have much inisght about people that have had totaly T's and if they can control their thyroid levels easily with meds, I would like to see more. There are also other alternatives to synthroid, I am not going to suggest any as I don't want to spread my non expert knowledge around. Good luck with your decisions, and if you have more questions about the actual surgery or anything, I will be around!


Old 01-01-2004, 06:29 PM   #6
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Join Date: Aug 2003
Location: kissimmee, FL
Posts: 12
sbmoms HB User
Re: 21-year-old suspected to have thyroid cancer...questions (long)

Hi, I had only the right side and three lumps taken off my Thyroid. I was told it looked like follica carcinoma but when I was in surgery the frozen biopsy came back good. The surgery for me was very easy. I had so many fears about the surgery but not one happen. I was in no pain at all, never took any meds after leaving the hospital. I even ate at Burger King on the way home from the hospital. lol After my surgery I did become hyper-thyroid for a while but with meds and time, it has gotten a lot better. I'm glad I had the surgery.
When I got home from the hospitla I was a little tried but never stayed in bed. I felt like I could go back to work in a few days but did as the dr. said, and took of a week. Good Luck, Susie

Old 01-02-2004, 06:18 AM   #7
Join Date: Sep 2002
Posts: 410
Aimee8396 HB User
Re: 21-year-old suspected to have thyroid cancer...questions (long)

I will give you the advice of not letting them take half of your thyroid, and then waiting to see if it is truely cancer. They cannot tell with follicular cancer until they do a final biopsy. I had 2 surgeries in less than a week because my endo said it would be the best, not to have no thyroid if it truely wasn't cancer. Recovering from 2 surgeries is a double whammy. There are other meds you can take, but your problem with the synthroid right now is probably that your thyroid is functioning fine and that you're making yourself hyper adding more meds. After surgery if you do RAI, which wasn't bad, and I would highly reccommend! You will be put on Cytomel for 4 weeks, to get you through, and then off all meds for 2 weeks. You will become very hypo, your TSH has to be above 35 to do RAI. Someone already mentioned the diet, very good idea. There is a lot of info at the THYCA website. I have had no issues with having no thyroid except that it may take a lot of time to get you on the right dose of meds, I have been on about 4 different doses this year trying to regulate. I have finally reached a good place and feel good, for the first time in a long time. Good luck, and get it removed....You don't want it spreading, it's harder to get rid of, and you may have to undergo more than 1 RAI. Good luck, Aimee

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