Medullary thyroid

[PatDeeks]

I have read nothing on this site on Medullary carcinomas.  Is there somewhere else I can find similar info?

[PatDeeks]

More good news...Calcitonin below 2 "unreadable" and  CEA down from in its hundreds to 5.6.  I'm told it would be preferable to be around 2 but will see again in 5 weeks checkup.  My neck and shoulders are still very stiff and numb and I have booked physio once a week for the next 6 months.
Another thing, I am now taking .15mg Eltroxin (thyroid replacement) and seem to be sweating a lot (I would say perspire to be more polite but I now carry a small towel around with me!).  I was wondering if this was just a side effect that will settle down in time?  Again, will check in 5 weeks but interested in any comments on this.

[alona99]

I am so glad everything finally worked out for you, what a wonderful blessing. You are right when you say how lucky are we "meddies" who have no spread to nodes despite large tumors. Thank you God. Mine was 3 cm with no spread and calcitonin at "2" now biochemically "cured" it had been found very much by "accident". Luck and blessings and an Angel of God all had a hand in it, I am sure you have these in your life too!

[stella5349]

This is good news and you sound like one of the most strongest people I will ever met.

Your attitude is one - many can learn from. I read this post from the beginning this morning and when I saw utahmomma on it - "right away" - I knew you would be in great hands.

She is one of my special GEM of a friends here at MH and her knowledge on all this cancer is outstanding.

Keep the board up to date with your "sucess" and I wish you all the best in everything.

[PatDeeks]

I went for my follow up visit to Specialist Surgeon on 12 Jan and was readmitted 13 Jan to drain abscesses in neck.  MRI scan redone to determine where fluid accumulation was and tests came back as no infection?  Neck re-opened, drained as much as possible and two drains left in for 2 days.

Swellling came down dramatically and I am now feeling fit enough to go back to work on Monday.  Don't look pretty, but nothing wrong with my brain, can turn my head, drive, speak and think ...can work!!  Must get life "back to normal".

Thanks to everyone for the support over this very trying time.  I feel great and very lucky to have been diagnosed and received top class treatment whilst I was able to.  My specialist has been practicing for 14 years and sees a medullary perhaps in every 2 years.  Of those he has seen, they have been in the region of 2 to 3 cm and usually spread to lymph nodes.  A reminder, mine was 6.5cm and hadn't spread.  How luck am I?  Follow up again in 6 weeks but am confident I can put this all behind me and hopefully be able to offer some assistance to anyone else with as many questions as I had.

[dee368]

Try this site  http://thyca.org/. There is a MEDDIES network there. I've found good information and people there.

I was diagnosed with MTC in 2007 and had a total thyroidectomy. Unfortunately, my Calcitonin levels didn't drop to 0. Its at 29 and I'm considering a central neck dissection w/ lymph node removals. My Dr. says he has patients with Calcitonin levels in the thousands after surgery.  Good news is that my CT Scans and Ultrasounds haven't shown any mestastises. It still bothers me that the calcitonin is elevated and having a lateral has no promises of causing it to drop to normal.  

[PatDeeks]

Hi Alona
I am grateful to Utahmomma - I found some useful information and affirmation.  The swelling is not swelling from the cut and op itself, but rather an accumulation of fluid.  I had 2 drains in for about a week after the op and was actually only discharged once the quantities draining had reduced to very little.
The physio, hot and cold packs have been helping - I guess I am just impatient.  Thanks for your advice and assistance.
Pat

[alona99]

I am glad Utahmomma wrote to you, she is a wealth of info and great person, take her advice, council and comfort she is a blessing! HUGS to both of you!!!! Sorry I don'r have more info on the swelling I was wondering about drains actually? Just a thought. Blessings! Please keep me informed

Alona

[utahmomma]

Hi,

Medullary is quite a rare form of thyroid cancer (about 4%) so you'll see a lot more on here about papillary and follicular.  However, here is some good info on Medullary Carcinoma:

http://www.endocrineweb.com/camed.html
http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_thyroid_cancer_43.asp
http://www.cumc.columbia.edu/dept/thyroid/medullary.html

Also check out the health pages on this forum (on the top, right side of the forum page) - there is info there on Medullary Carcinomas.   Talk to your endo - you need to be tested for the MEN2a and MEN2b gene - Medullary carcinoma is often hereditary and can also be associated with a cluster of other endocrine problems.  Medullary and anaplastic thyroid cancers are NOT treated at all like papillary and follicular carcinomas.  Medullary (and anaplastic) carcinomas don't come from the thyroid tissue itself but from parafollicular cells.  These cells don't absorb iodine and cannot be detected or killed with radioactive iodine (RAI).  Your cancer marker is your calcitonin levels - not thyroglobulin levels for papillary or follicular.

One book which I bought and just love is "Essentials of Thyroid Cancer Management" by Amdur and Mazzaferri (I found it on Amazon.com) - it really gives you some good insight into your condition.  It is very much a medical book though (just a warning).

I hope that you have an endocrinologist or oncologist who specializes in thyroid conditions - most don't - and it's important that you find one.

My best to you!

Utahmomma
papillary carcinoma '03, second surgery '04, recurrence and RAI '06
three sisters with papillary carcinoma; another sister and daughter with precancerous nodules