Thanks for the info. But why do you cry for your thyroid back? Have you experienced any problems? If so which, that is of course if you don't mind sharing the information?
I had FNA and it shows Hurtle cells and all kind of nucleated cell .Doctor recom. total thyroidectomy as I had multinodule goiter I did the surgery over 1 year ago turn to be all benign. Since then I keep crying for my thyroid back.You choice.But make shure you monitoring it closely,but may be mine will turn malignant later anyway as everything has beginning.Good luck.
Thank you! Both of you thank you, you've made this process a bit easier and help me to understand both the surgery and the disease a little bit better.
Wow...what a coincidence as well as with Utahmommy's Daughter's age. I am about 6 weeks post TT and other than feeling "exhausted" at a certain hour...I can truly say that i'm feeling pretty good. Although, I do have a long way to go as far as getting my dosage correct, i am keeping up with all of the "side effects" that I do have and mentioning them to my doctor. I am one of those "patients" that will contact my doc in a heartbeat if something does not seem right. I was very nervous before having the TT and very skeptical because I heard horor stories about the "after effect" but because my health was threatened if i did not have the surgery, I decided to go through with it and i'm glad that i did! I'm sure that everything will fall into place eventually. The most important thing to do as far as "weight gain" is to monitor what you eat and most certainly excercise. Before I had the surgery, I was dedicated to a gym and also have changed my diet, losing 25lbs and that was another reason why i was hesitant on having the surgery.......but, I started back exercising and will keep taps on my weight as well. Your mom will be fine....she has a great and caring Daughter to make sure of that.....:)
Aw, thanks. And wow! I am truly learning a lot, not just about the procedure but about the affects of cancer and thyroid cancer. I know everyone also has a different reaction to cancer as well as other diseases and it doesn't hurt to know the effects, like I said I'm learning a lot. Finding this forum has truly been a blessing. I have faith that my family will get through this, we have love, support, and for the most part good health.
Many blessings to you and your family and may you enjoy your health and youth (yes I still think 40 is young ;)
BTW - my daughter that I mentioned who had precancerous nodules? She had her thyroid removed when she was 16 (and a large nodule was actually compressing her jugular vein and no one knew it). She's *ALSO* 22 now and the mother of the most beautiful 1 year old ever.
Yeah, there is live after thyroid surgery (and thyroid cancer)
Guess that 22 is a great age for wonderful daughters. :-)
The isthmus was removed with the right lobe (first surgery). Second surgery took the left lobe.
No surgeon can remove *all* thyroid tissue - it's wrapped around nerves, blood vessels, etc. There is always a little bit that remains. My recurrence was in the remaining tissue (the "thyroid bed"). However - my sister's recurrences were in her thyroid bed, lymph nodes, GI tract, liver, and breasts.
Papillary carcinomas spread through "micro cancers" and is often "multi focal" (meaning that it pops up in more than one area). All of my sisters had multiple tumors throughout their thyroids. My endo said that I must have had some micro cancers in the remaining (very small) amount of thyroid tissue left after the surgery that just decided to grow. That's why we monitor the thyroglobulin levels!
About the weight gain - yeah. I also found that my body reacts to sugar very differently since the thyroid was removed - which would make some since because the thyroid and pancreas are all part of the endocrine system. It's like I have an entire new body and I really have to watch what I eat and the weight is very, very easy to put on.
But, hey, beats having cancer!!! :-)
Thanks again for sharing your knowledge and for sharing your testimony. I find it helpful and reassuring although I must admit the whole process is scary. If you don't mind me asking (this is for the two of you ), how have your bodies changed and reacted after surgery? And for utahmomma both sides of your thyroid were removed, but were any parts left like the isthmus, if so do you believe that your recurrence may have been due to any remaining thyroid parts that may have been or become malignant? Also have any of you had any issues with weight gain after having complete or partial removal of the thyroid gland? My apologies if I'm asking to many questions I know it may seem like I have an endless amount of question but I'm just trying to educate myself so that I can better support my mom during this process.
P.S. to blsdnsvd your oldest daughter and I are the same age, ;) what a coincidence hey!
Thank you both I appreciate your help!
What a Testimony! It's a great thing that you are on this board and willing to share your story and help other's as well. I have a Question for you...being that your thyroid was removed, how did they explain the reoccurrence, I am curious???
I have two sister's and three daughters...I had my oldest (22) recently do lab work to have her level's checked and they were normal. Although mine were also normal, my diagnosis was a Goiter with multi-nodules and no other symptoms at all, I urged my sister's to at least mention to their doc's so that they may at least have an ultrasound but as of yet, it hasn't moved them. No one else in my family besides a "cousin" had thyroid issues as far as anyone knows. I have learned to educate myself become aware of any changes within my body that is unusual. Thank's for sharing your story....
I received your PM but thought I should answer here in case others have similar questions.
Blsdnsvd covered the issue very well. As for me, I had no symptoms. My small (5mm) nodule was found on an unrelated CT scan. The radiologist suggested I followup with it and I had an ultrasound. What I saw on the ultrasound scared me enough to jump right to a surgeon (irregular margins, complex nodule). The *goal* was to take just the right lobe and do a "cut down" in the OR to see if there was cancer or not. If there was cancer the left half was to come out at the same time. The surgeon removed the right lobe and the pathologist did a cut-down and didn't find cancer so I was closed up and sent to recovery. While I was in recovery the pathologist did more cutting and found cancer. - Result of first surgery was right lobe gone, left lobe nodule free.
A few months later my youngest sister was in a minor car accident. They found thyroid nodules on her chest x-ray. She had a FNA (which was negative) but felt worried enough about it she had the thyroid surgery. Both lobes, the isthmus, and some lymph nodes were cancerous. After that the remaining three sisters ran out and had thyroid ultrasounds - all had nodules. One had an FNA, which was negative, yet she had surgery anyway - it was cancer.
I had my children's thyroids scanned too.
Within 12 months time we had four (all sisters) with papillary carcinoma; two precancerous thyroids (other sister and my daughter); and 5 out of 6 with Hashimoto's (everyone but me). Because of all of that I had the other half of my thyroid removed (still benign). Good thing I did too because two years after my second surgery I had a recurrence and had to have the RAI.
Long story short . . . *none of us* had any symptoms. They surgery was all pushed by us in order to be precautious. The surgeries weren't really that bad. I had them both on Thursdays and went to work on Mondays. Stiff, sore neck and an ugly scar that disappeared within about 12 months.
All of us had to go on replacement hormones (Synthroid, etc.) after the surgery to maintain our bodies and suppress any remaining cancer. Thyroid disease does NOT end with surgery. The thyroid controls and maintains so much of your body that proper hormone replacement meds MUST be maintained for life. My entire body changed after having the thyroid removed but it sure beats the cancer.
Yes, I have read studies that the RAI puts you at slightly higher risk for other cancers (lymphoma, leukemia, breast) but it is necessary to stop the cancer if it recurs or spreads. My youngest sister had recurrence/metastases throughout her GI tract, liver and breasts and had to go through 3 doses of RAI. Today (5 years later) she is 100% cancer free (her thyroglobulin level - the cancer marker - is "undetectable). She has also had two beautiful daughters since then.
There was no indication of thyroid cancer in my family and papillary carcinoma is "non-hereditary". My sisters and I grew up drinking well water but my daughter did not. No idea what is going on. We are in a genetic study but they still cannot find a link.
Hope some of this helps.
Your mom will do great. Those of us in our *early* (wink, wink) 40s are survivors!!
Take care
Utah
Thank you very much, I will take into consideration everything you both have said.
I agree with everything that UtahMomma says. I am 42yrs old and recently had a "Total Thydectomy" for the same reason as your mom's situation. I had "Clustered Hurthle Cells" on one side of the thyroid and "Follicular Cells on the other side"...and due to that: Total Removal was Recommended. A "fine needle Biopsy (FNA) is not considered a 100% accurate diagnosis when pertaining to "Hurthle Cells" because normal and abnormal cells are similiar when testing them, therefore it's hard to tell the difference. Only removal of the thyroid will determine because the tissue's are dissected piece by piece. (too bad they can't put the gland back in if it's benign..lol), as in my case. There are some short term side effects from surgery but very minimal...(Stiffness in the neck, Sore Throat, Swelling in the neck area, "Calcium drop", some uncomfortability while recoverin)...Long terms side effects are due to "not having a thyroid and getting adjusting to the thyroid hormone (which your mom is already taking)...she may be use to them considering she is now have "hypo" symtoms. The main issue her is that: due to her fna diagnosis, she may want to consider having surgery to rule out Malignancy. By chance, if there is malignancy within the thyroid, once the thyroid is removed, so is the malignancy. In "some" cases, if it has spread to the lymph nodes, they are also removed. AS explained to me, Thyroid cancer are one of the most treatable and curable cancer's if caught early. Your mom is young and will be fine. God Bless You Both...
Hello and thank you for the response. It's reassuring to get information from someone who's been through this process. My mother's endocrinologist recommended she get her complete thyroid removed just to be on the safe side and to be honest both my mother and I got a bit freaked out (actually she's been afraid since she got the call from her endocrinologist). Ironically I too thought of lymph nodes when they talked about removing her thyroid. Even though cancer wasn't mentioned I'm curious whether they'll remove those just to be on the safe side seeing as they are always linked to cancer, so I'll be sure to ask or tell my mom to ask her endocrinologist and the surgeon recommended by her endocrinologist about that. Seeing as you had surgery I was hoping you wouldn't mind me asking you a few questions both my mother and I have in our minds about it. Just in case you don't mind here are the questions. First what were your symptoms or what were you feeling before knowing you needed surgery? How were you feeling after your surgery and was your complete thyroid gland removed, if it was completely removed how does it feel to be without a thyroid gland? After surgery what other treatments did you receive? Did your doctor say if the iodine radiation treatment you received puts you at risk of getting other cancers? Were you ever diagnosed with a specific thyroid problem that lead to the cancer, if so which? After going through all this ordeal how are you currently feeling and are you currently having any issues related to your previous thyroid disease? Do thyroid disease issues end with surgery?
My apologies if my response is to lengthy, I've never had to go through these sort of issues with anyone and now that I am going through it with someone whom I care about dearly I want to make sure that I have enough information to make sure I can provide the best support I can.
Once again thank you,
Concerned Daughter :)
Hello concerned daughter,
I understand your concern. Follicular/Hurthle cells *cannot* be determined to be malignant or atypical (precancerous) until the thyroid is removed and sent to pathology. With all of your mother's symptoms and the abundance of Follicular and Hurthle cells a surgical consult is a good idea.
As for the lymphocytes - that is an indication of autoimmune issues. Hashimoto's can be determined from blood tests or on pathology after the thyroid is removed. They may also want to examine a few sentinel lymph nodes to see if there is any lymph involvement.
The reason the ultrasound/biopsy results say "follow up is recommended" is because they can't come right out and say "get it out!" - that would be a liability. That's their way of saying "don't ignore this!!!!"
Thyroid issues dramatically affect menstrual problems - and can cause depression.
It sounds like your mother needs to talk to a good head and neck surgeon. The surgery isn't that bad (hey, I liked it so much I had it twice). And *if* it is malignant the entire thyroid will need to be removed before she can be given the radiation treatment to kill off any remaining thyroid tissue (it cannot all be removed surgically) and any remaining malignancy. The good thing about follicular or papillary carcinomas is there is a specialized radiation treatment: thyroid tissue absorbs iodine and they give you an oral dose of highly radiated iodine (we call it RAI or I-131). That radiated iodine goes throughout the body and targets any thyroid tissue/cancer. No chemo, no external-beam radiation. It's a really specific treatment.
If you have any particular questions, please send me a PM. And tell your mom she's at a great age (like me!) :-)
Utahmomma
papillary carcinoma '03, second surgery '04, recurrence and RAI '06
three sisters with papillary carcinoma (one with three recurrences/RAI)
another sister/daughter with precancerous nodules