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Frustrated....Hypo to Hyper to Medullary Cancer

blrogers
Posts: 1
Joined: May 2010

OK, I know everyone has a unique story, but I am so frustrated by my Doctors, maybe it is the "CANCER" diagnosis or "standard care" or "lack of care" from the MD's??? Maybe someone out there has a similar experience or can put it perspective for me.
So here is my story;
In 1985, my MD diagnosed me with Hypothyroid and I began taking Synthroid for 21 year. 4 years ago, during a routine physical, my MD stopped the Synthroid, stating I now was too low. So for 4 years I did not take any Synthroid. During my annual physical last year my MD noticed a lump on my right thyroid and ordered a ultrasound. During the ultrasound,I asked the technician to check the left side, because I could feel a lump on that side also, she did and noted a goiter on the left and a hyper-vascular mass on the right. The MD then ordered a biopsy on the right, stating the left was just a goiter. The biopsy came back undiagnosable, but my labs were still off. The MD then referred me to an Endocrinologist. He repeated the ultrasound and a biopsy on both sides, after I insisted he check the left side also. Again I was told the left side was just a goiter. Again the test came back undiagnosable. The Endocrinologist wanted to wait and test again in a few months. I had another ultrasound and the goiter on the left had grown and the hype-rvascular mass was the same. I was then referred to a surgeon. It was my husband that asked the surgeon if we could just remove the entire thyroid, if radiation would affect the future test results on the left side, and I had been on Synthroid before, it just made sense to be done with it. The surgeon agreed. In April 2010 I had a total thyroidectomy. The surgeon stated she did not see any thing questionable, other than the hyper-vascular mass on the right.
A week later the pathology report stated the left thyroid was positive for medullary carcinoma pT1 Nx, Stage 1. The surgeon, as well as I, was very surprised.
Now the questions begin. Everything I have read states the lymph nodes should be removed, at least on the affected (left) side. The surgeon states I do not need additional surgery to remove them due to the carcinoma being less than 1 cm. But did not really check them because cancer was not anticipated. I will be having lab test next month to check my calcitonin levels, which the surgeon anticipates to be normal. So, if the calcitonin level is high that means there is still cancer somewhere? Where does it go, the lymph nodes, then the lungs and liver? Do you feel the MD's are doing what is needed or should I get another MD as my husband wants me too? I understand there are 4 different types of medullary cancer. MD has never stated which kind, or testing to find out, I have 2 daughters and sure do not want to pass this on.
Sorry for all the rambling, just wanted to get my story out.
Any thoughts or ideas are appreciated, I think I'm still in shock from the prognosis and unsure about what I read because I don't know what type I have or even if it matters.
Thank You for letting me vent!

garry1969's picture
garry1969
Posts: 4
Joined: Dec 2010

Hi sorry to hear of your bad news - I was diagnosed with MTC nearly four years ago and have spent a lot of time reading up on this disease and also spoke to a lot of other sufferers.
I think the main thing I have learned is that nobody has all the answers and no two cases are the exactly the same. I can offer you my opinions which are just based on my experiences but I don't have any sort of medical training.
You ask about your calcitonin levels - if you have calcitonin in your blood then you have some level of tumor in your body somewhere. Over the years my levels have been as high as over three thousand and as low as three hundred. If you do have a level of calcitonin in your blood then it's more a question of whether it is rising or stable. Your next reading should tell you a lot. You should definitely be sent for genetic tests to find out if this cancer is genetic or sporadic and I'm surprised this hasn't already been mentioned you should also have a twenty four hour urine collection to exclude pheochromacytoma. I think the natural progression of this disease is thyroid lymph, surrounding nodes, nodes in chest then onto internal organs - liver etc. I really don't feel as though you need to worry about this as your tumor was quite small - if you had a ct scan then an op abnormal nodes would show up so hopefully it has not spread to surrounding areas - if this is the case and I hope it is then you are facing the best prognosis - cases where MTC is confined to thyroid only usually always end up fine
Hope this has been some help to you and good luck.

Garry

nasher
Posts: 507
Joined: Apr 2010

Just my guess

Since they say your cancer was Stage 1 it probably has not left the thyroid tissue (probably not even the goiter) <--hence stage 1

I would print out the articles and locations you got the articles from and highlight the sections and then bring those to your doctor.

you are not rambling your post made perfect sense to me in fact I would like to know more about the report... pulling out my copy of my report...
-----
-capsular invasion is not identified
-lymph/vascular invasion is not identified
-extrathyroid extension is not identified
-focal intrathyroidal parathyroid tissue is identified
-Goiter is present in the surrounding thyroid tissue
-----
this what determined in my case that it was stage one and is probably in the report (if they haven’t given you a copy ask for it).
I had follicular and papillary cancer I have not studied medullary cancer much so I don’t know what else i would push for.

1. Get copies of all your labs and all your scans and reports related to the surgery , be sure to include doctors notes in your request.
2. Make a few copies of it you may need them later
3. Read through and research any term or condition you do not fully understand and make notes and questions
4. Next time you visit your doctor and bring up all your questions and concerns.
5. if you see a new doctor bring a copy of your reports and notes and give him written consent to consult with the past doc and get copies of the relevant data as well.

Remember always to keep one copy of all your reports and labs and such cause they can and probably will charge you for copies and it may take weeks to get another one.

Also if you come up with any good questions post them here as well so anyone else who is going through the same or similar situations can advise and any new people can get more information as well.

Please keep venting and keep us informed.

Yes question everything and become the expert that you wish your doctors were.

Craig

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