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Has anyone been diagnosed with two different thyroid cancers?

FCT2010
Posts: 21
Joined: May 2010

Hello. I am new to CSN.

My FNA in February 2010 showed that I had a Hurthle Cell neoplasm, sadly, so did the second opinion FNA in April. My lobectomy was on May 3, results showed I had Hurthle cell carcinoma (3.2 cm). My second surgery to remove the rest of my thyroid was May 17. I saw my Endo on May 20 who told me they found a few papillary cancer nodules on my right lobe. How crazy is that?!? Is there anyone else out there who has had a similar diagnosis as myself - two different thyroid cancers?

I know that papillary cancer is less aggressive than HCC, and that they are treated the same way. What scares me is that HCC can be aggressive and sometimes doesn't take up RAI treatments. From reading the forums just now, sounds like HCC can recur as well.

My RAI is scheduled for June 30. Would love to hear from anyone else who has been diagnosed with two different thyroid cancers, and how they are dealing with it.

Should add that I am a 40 year old female. My primary doc noticed the lump on my left thyroid last November. I had felt the lump, but had thought it was just a fat roll on my neck since I had gained a lot of weight.

loispol1
Posts: 84
Joined: Feb 2010

There have been posts listed by people who have both types of hurthle cell and pap. posted under the hurthle cell headings, there are a couple of these headings, here. I had a FNA hurthle cell neoplasm result and i haven't had my surgery TT recommended due to 8 nodules, age and hasimotos enlarged goiter (I have had this since 1993). My surgery was for April but I became too ill for surgery due to other health issues. It is re-scheduled for June 11, 2010.I would try reading about hurthle cell as it can be treated a little differently in the long run and it is rare so there is less info. about it. From what I understand it is never considered cured as it can have a high reoccurrence rate. eMedicine has an excellent article concerning hurthle cell to read, you can do a search and find it. They also have an excellent up-to-date articles on papillary & follicular type’s cancers as well. Not all doctors understand hurthle cell. The large teaching hospitals (such as MD Anderson, Mayo, John Hopkins, Sloan Kettering and more) seem to understand it best and some people travel to be treated appropriately if they need to. Most of these larger hospitals have information concerning all this on their websites as well. Papillary cancer can for certain people be aggressive from what I know. And hurthle cell can travel to distant areas like lymph nodes the lungs, bone, liver and even kidneys in some cases. Pap ca. tends to stay in neck lymph nodes, and other neck & head areas, but there are variances to any generalizations. You should read up on both types! Do you know what size the pap. ca. nodules? I would start gathering your medical records and physician’s office notes and reading them. It is important to understand what you are dealing with and research your situation. Not all hurthle cell cancers spread or are aggressive. You can find other information at thyca.org, the thyroid cancer discussion groups also. There are lot of posts there all the time and some are from people are like you and have dx of both. Hope this helps! Lois

FCT2010
Posts: 21
Joined: May 2010

Thanks for all the info. I'll check the hurthle cell headings to find others with the same predicament as myself. Didn't really think I needed to know more about pap ca, since it is less aggressive, but you're probably right that I should educate myself on it as well. All good suggestions!

My HCC was 3.2cm. There were three small pap ca nodules, two at less than 1mm, the other at 1mm, and located at the edge of my right lobe. The path reports also noted that I had chronic thyroiditis in the left lobe and lymphocytic thyroiditis suggestive of Hashimoto thyroiditis in the right lobe. So it sounds like my thyroid was having issues for sometime before my doc found the lump on my left lobe last November.

Good luck on your upcoming TT. I'm praying for your speedy recovery, and that they get everything. Please keep me posted on how everything goes for you.

loispol1
Posts: 84
Joined: Feb 2010

Thanks for the good wishes, I am ready to have more/the final answers and surgery over! I have hasimotos also, it eventualy destroys the thyroid. From all the posts I have read everyone says get your records, read everything you can find and get another opinion or even more if confused of things don't seem right. There are people who will help you here who know more than me and are going through hurthle cell, and again, some with both, who will write you! Good luck & nice meeting you! Lois

loispol1
Posts: 84
Joined: Feb 2010

Someone has posted recently that she has both, mostly hurthle cell and 2 smaller pap ca pathology results. Her post is long and very informative. It was posted this month (May) and is almost at the end the discussion. You should go check it out! Lois

mollyd350
Posts: 4
Joined: May 2010

... that might have been me ... I was diagnosed with a large HC (6cm - I'm almost age 50) and very small papillary in the other lobe (4 mm). My docs were not too wigged out about the pap as it was so small, and I was told (don't know if this is true) that many people have this type of occurence of pap that goes unnoticed - it might be found in an autopsy - when a person has died of other causes ....

And, yes, the treatment related to removal of all possible thyroid tissue (surgically and through radiation) seems the same. From reading on this site, it seems there is some more aggressive cases of pap out there - though perhaps not as common ....

I guess we're all a bit different, and really only time will tell if we have more or less aggressive issues and recurrences. I'm enjoying my current status of OK .... I'll take that for now.

Best and hope that's helpful. I did have my second surgery at Mayo in MN, and also see a regular endo - treating as aggressively as possible (there's only so much one can do if there aren't noted tumors going on anywhere known ....) vigilent self care (blood tests, regular scans and ultrasounds, keep that stress down, ya know ... :))

So happy to be breathing today!!

M.

FCT2010
Posts: 21
Joined: May 2010

Hi Mollyd350.

Thanks for the reassuring email.

Overall, are you happy with how your treatment has been managed? I think I get too far ahead of myself and start to panic about what is before me (becoming hypo for 19 days; low-iodine diet; RAI and whole body scans). Seems like a lot of people on this forum have gone to Mayo-MN. I'm in San Diego, and I have no idea if my Endo is managing things aggressively or not.

What was your RAI dosage? I think mine will be between 100-150 millicuries, or something like that. My 2nd opinion ENDO said since I have HCC, she'd go with a 'higher' dosage, but didn't give me a number. I wonder if there is a standard dosage for HCC, even though there's a good chance it wont take up the radiation.

mollyd350
Posts: 4
Joined: May 2010

Hey FCT

Sorry I did not see this earlier! I don't check here as often as I should.

Well - overall, I'd say I have mixed feelings about how things have been handled. How about for you? I had nodules for years (30) - with 4 biopsies that showed "benign"; and it took them over 9 days after my first surgery for them to call me and tell my of the HCC dx - which put off my second surgery for months. So, with regard to the early parts - it could have gone better - but, after the dx. - so far I feel good about it. I understand getting ahead of yourself. I had to ban myself from the internet (that helped in my panic mode) and just focus on today. I was hypo for 21 days - 19 seems in the ballpark - low iodine, RAI, all good. San Diego has great medical care - I DO think it's important to get as many opinions as you need to feel confident in your care - it helped me. So go get more if you want.

I felt good about Mayo - I suppose because of their reputation, and the insane teams of doctors and equipment they have - I know they have an offshoot in PHX, AZ, which might be closer for you, and an option? They did my second surgery - but my regular endo is overseing my care now - they were in agreement with her plan, though they were actually less aggressive in their stance than she - I'm opting for aggressive ....

My RAI dosage was 99 millicuries. That was "big", per the dosage guy - I think it's done by weight/age etc. And - the radiation is also to obliterate the remaining thyroid tissue, where remaining cells could gain growth.

My next treatments are neck ultrasound (where the radiation uptook) to see how things look in August. I'm a bit nervous as it approaches; I suppose that's inevitable. I also have had weird feelings in my neck since the radiation. I don't know if that's normal or not.

I'd love to hear how you're doing!

Molly!

ChristAlone08
Posts: 1
Joined: May 2010

Hi, I am 20 years old. I was diagnosed with papillary and follicular cancer 2 years ago. I had a total thyroidectomy and 9 lymph nodes removed. I then had RI. I am now cancer free. I never showed any signs or symptoms of having problems with cancer or thyroid problems. All my blood work was normal. I am lucky my doctor found the tumor. I am now cancer free as of January. Feel free to ask me any questions!

rebeccalee170
Posts: 2
Joined: May 2010

Hi, my case is a lot like yours. I am fourteen years old and had a hemithyroidectomy earlier this month. The results came back and they found that I have papillary and follicular thyroid cancer. I am going back in one week to have a total thyroidectomy. I hope that my story will have the same happy ending as yours did! Can you give me some information on your recovery, as I am a little nervous?

FCT2010
Posts: 21
Joined: May 2010

Hi ChristAlone08.

Sorry it took so long for me to reply. I'm so happy for you that you are now cancer free - this is a good year for you!

So my questions...What was the hardest part for you about your treatment? You are half my age, so you are dealing with all of this and still have many years ahead of you. I was lucky to never have any health problems until I was in my late 20's when I need surgery for a torn miniscus. I don't know how I would've handled two thyroid cancers 20 years ago.

For my second surgery, they were only looking for HCC, so I don't think they even considered taking out or looking at my lymph nodes. How did your doc find the tumors? Were the cancers in the same lobe, or one in each lobe?

grateful1
Posts: 81
Joined: Jun 2010

I CAN'T EVEN GET A DIAGNOSIS--OTHER THAN POORLY DIFFERIATED THYROID CANCER. AT FIRST THEY THOUGHT IT WAS ANAPLASTIC. UGH. BAD NEWS. I HAD A NEEDLE BIOPSY IN FEB. THEN I HAD SURGERY IN APRIL--AND THE TUMOR WAS INOPERABLE THO THEY TRIED FIVE HOURS--TOO CLOSE TO AORTA, ETC. ANYWAY, THEY DID A BIOPSY THEN AND IT CAME BACK BENIGN. TUMOR IS LARGE, HURTS. I START IODINE TREATMENT AND SUTENT. I TAKE SUPPLEMENTS. I AM NOT A GOOD CANDIDATE FOR REGULAR RADIATION--FIVE DAYS FOR SIX WEEKS AS I HAVE ESOPHIGITIS AND A MUSCLE DISEASE.THE DRS DON'T AGREE ON A DIAGNOSIS OF THE CANCER,

grateful1
Posts: 81
Joined: Jun 2010

I FORGOT TO MENTION THIS IS WHAT THREW ME OFF. I HAD A NODULE ON THE RIGHT SIDE FOR SEVEN YRS. IT WAS A GOITER--BUT ONE DR WAS SURE THERE WAS CANCER BEHIND WHAT THE NEEDLE BIOPSY. BECAUSE I WAS IRRADIATED TO THE THYMUS IN THE 1940S AND WE ALMOST ALWAYS GET CANCER AND THE DR SAID TAKE IT OUT. I DIDN'T BECUZ I WAS TOO HIGH RISK FOR SURGERY DUE TO OTHER MED PROBLEMS.
THEN IN 2006 I WENT FOR ANOTHER SCAN. THE DOCTOR NEVER TOLD ME THEY FOND A NODULE ON THE LEFT SIDE. SO I ASSUMED EVERYTHING WAS STABLE AS BEFORE. THEN IN DEC., 2009 I STARTED GETTING A LOT OF PAIN ON THE LEFT SIDE AND WENT FOR ANOTHER SCAN. THEY DID A NEEDLE BIOPSY AND FOUND IF TO BE MALIGNANT ON THE LEFT SIDE--AND CALLED IT POORLY DIFFERENTIATED--DOCTORS AT MEMORIAL AND ELSEWHERE FELT IT COULD BE ANAPLASTIC. I WAS OPERATED ON IN APRIL--AND THEY COULDN'T REMOVE IT DUE TO ITS POSITION. THE SURGeON THoUGHT IT LOOKED ANAPLASTIC.
THEN I WENT TO THE RADIOLOGIST AND HE DIDN'T THINK IT WAS ANAPLASTIC AS I WOULd Have lost my vocal cords by now. to make matters more confusing they did a biopsy in april when operating and it came back to their shock benign.

then they did scan and it lit up like cancer so i am undergoing iodine treatment and sutent. there are a no of doctors involved now--and they have different opinions. they just call it aggressive--all the drs. but one sys papillary and the other says anaplastic on the left and goiter on the right.

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