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Pappilary thyroid cancer

Netlin
Posts: 3
Joined: Mar 2004

Hi-

I have had Pappilary thyroid cancer going on the 1 first year. I am recovering from a second surgery that was a result of three lumps I felt in my neck a month ago. After an ultra sound,biopsy, MRI and PET scan all test showed activity in the neck. I went in for a partial neck dissection ( 27 lymph nodes taken and 19 were positive for cancer). I am recouperating well. My question I have is, does everyone have an oncologist? I do not have one yet. I think I should have one right? I am going in to see my endocronologist this week and discuss treatment and stuff. Thanks for any input.

Annette

kayetera
Posts: 13
Joined: Mar 2004

Annette,
I have papillary thyroid cancer too and I am also a cancer nurse with over 10 yrs experience. Usually the endocrinologist treats thyroid cancers, although I have heard of a few people who had oncologists. The oncologists whom I work with prefer to leave the treatment to the endocrinologists. Our cancer is highly manageable with radioactive iodine treatments, follow-up, and occasionally additional surgery as in your case.

You can always call an oncology group and ask if they accept thyroid cancer patients; they may tell you that they prefer that the endocrinologist treat it. To the best of my recollection, we had very few thyroid cancer patients on my unit----they went to the medical floor where the endocrinologists practiced. The same with skin cancers---dermatologists were the primary care doctors unnless the patient had advanced melanoma and required intravenous chemotherapy.

Ask your endocrinologist for his opinion. He will refer you to an oncologist if your case is warranted.

Best of luck,
Teresa
Texas

cherrie
Posts: 38
Joined: Oct 2003

Hi Annette!
My name is Cherrie and I have papilary cancer for 16 years,in those years I've had 3 treatments.I do not have an Oncologist I have the same dr you have.Where I had my treatment in 1994 was an Oncologist and the one that gave me the treatment last year,but I think if you do need one your dr will tell you.So don't worry.
Cherrie

peytonsdad
Posts: 10
Joined: Sep 2004

Hi guys, My name is Butch
To answer your question, no you really don't need an oncologist for this one!! Your Endo.is the specialist you need! I went to an oncologist for my cancer and he didn't have a clue! I ended up at OHIO STATE with an Endo. who is a thyroid cancer specialist....sounds like your with the right Doc.

factfinder
Posts: 6
Joined: Aug 2011

Hi Annette I know it is a little late to respond but I have been fighting this type of cancer since 2008. It started with the thyroidectomy and since then I have had two neck dissections both right and left side. The first one done in 2009 they removed 15 lymph nodes with 8 being papillary cancer. The latest one done on 6/6/11 they removed 48 lymph nodes with a total of 18 cancerous. I have never consulted an oncologist, but my endocrinologist suggested I do consult one because as of this date I have felt 2 further lumps. I think she does not know what else to do. With these dissections I have muscle damage since the nodes were clustered around the neck muscle and also they removed a vein due to the cluster of nodes. As far as radiation goes she feels it will be of no use.

At this point in time I am looking for answers and hopefully the oncologist has some. I truly believe that the amount of radiation I have had for the past three years has caused some of these lymph nodes. I have also lost my saliva and taste so I cannot really eat without drinking. This I am told will not come back due to the radiation.

My point is, is it worth all the trouble? It is true that sometimes the cure is worse than the problem.

Factfinder

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Factfinder,

I am not sure if the other posters are still on this site. I wanted to comment on your post because I too had Papillary Thyroid cancer with metastasis to the lymph nodes. Three surgeries and two RAI treatments. The last RAI was in February and it was almost the maximum dose. I would have to say that while the treatments suck, the only other option is to let it spread and kill you.

My tissue was tested after my second surgery for the B-RAF mutation gene and found to be positive which is why my cancer keeps coming back. Forty-three percent of us have the gene. I believe that without the RAI I would have been in much worse shape.

I was prescribed steroids while on my treatments to help with preserving my salivary glands and taste buds. It worked for me. I am so sorry you have to go through the misery of the after effects of the RAI.

I too have muscle damage in my neck. Wake up every day with stiff neck syndrome. Exercise usually helps along with physical therapy. But I also have a malformation of my skull which doesn't help my issue. Taking ibuprofen helps a great deal.

I highly recommend and Oncologist. They are they experts in treating cancer. While Endocrinologists are great doctors, they need assistance from a qualified Oncologist as well. I was lucky to find an Oncologist that specializes in Endocrinology and surgery at the University of Arizona.

Keep up the fight and know that you are not alone. Many of us on this site have gone through what you are going through. Some more extreme and some not as extreme. The truth is that we all need support and proper care. We all agree that we have to be our own advocates.

Blessings,
Julie-SunnyAZ

factfinder
Posts: 6
Joined: Aug 2011

Hi Julie, I was very happy that you did reply to my inquiries and understand your view points. This is my problem, I was told by my surgeon who has done the thyroidectomy and two dissections of the neck that this is the "good" cancer and usually just covers the neck area. Now as usual I am the biggest skeptic because as far as I am concerned there is no "good" cancer regardless of it being papillary or otherwise. My concerns started with the fact that there are 5 other members of my family with the same diagnosis, although I am the only one that has has gone through the dissections. This is why I am going to consult an oncologist I figure I have nothing to lose and perhaps he will have a different outlook for my problem. I will be seeing this new doctor on the 24th of this month. I live in an area (Hartford CT) where we have several great hospitals and physicians. I hope my endo doctor is right on about this doctor.

Also when I did ask my endocrinologist about the problem with my salivary glands she stated that there was nothing that could be done. I was glad to hear that the steroids have helped you, but the only problem with steroids is that it does effect people who are diabetic which I am, it raises their levels. I will discuss this with the oncologist.

With respect to the muscle damage this not only effects my neck but it travels down to my left shoulder and after a while it feels as if I am carrying a body on my back. The suggestion of physical therapy makes perfect sense. I am going to get a referral from my doctor as soon as possible. I was a little afraid that it was too soon, but enough is enough.

Just want you and everyone else who reads this that I am grateful for any input and am glad that I have reached out to those who suffer from this frustrating disease.

For now I remain thankful.

Factfinder

amorriso
Posts: 186
Joined: Oct 2010

Hi. I had my TT in september last year, a round of RAI in november and thought I was done. Like you the doctors said it was a good cancer.HA! I noticed a swelling of my lymph nodes in january, and after a PET scan under went a biltateral neck dissection.(different surgeon this time - much better) 48 nodes out, 7 had cancer. I followed up with another RAI and had a good scan afterwards. I'm in the wait and see stage now.

Anyway - after the second surgery I too had lots of problems with my left shoulder. I used to wake up with it aching so badly I wouldnt be able to lift a coffee cup. And I dropped a few plates too - no strength at all. I also had trouble getting even a tshirt on or off. I went to physio a month after my surgery - its helped a lot - its pretty much back to normal now. I still do my exercises every day though.

I had problems with my salivary glands after the RAI. One side used to swell badly if I ate certain foods. My physiotherapists showed me how to massage the area to get things flowing. As long as I drink lots of water with my meals its good. I had my RAI in May and its only in the last few weeks that I can taste everything again. With the exception of potato chips -they still dont taste right and really dry out my mouth.

As for follow up with doctors i see an endo/oncologist - he's ok but not as aggressive with treatment as I think he should be. I double check everything with my second surgeon - him I trust.

Good luck with you next appointment

nasher
Posts: 507
Joined: Apr 2010

Well Factfinder that is the question

if you do not get treated for thyroid cancer what is the life expectancy as well as the quality of life.

If for you the Quality of Life would be better is it worth it.

I have lost some of my taste and some of my Salivary gland function do to RAI.

Yes there is always the risk that radiation can cause other problems.

@ Sunny - never heard of stiff neck syndrome but i probably have that too..

Myself, I am just over 1 year out and have not had a recurrence yet.........

If I get a reoccurrence I will defiantly see an Oncologists but until then I think for me an Endocrinologist will be enough.

Right now I think I am suffering from "too many medical appointment syndrome"

Craig

factfinder
Posts: 6
Joined: Aug 2011

Craig, thank you for your input. Believe me when I say that I will fight tooth and nail to figure out how to stop the recurring papillary lymph nodes in my neck. It just seems that after two months from surgery I should not be feeling more lumps so that is why I am consulting an oncologist.

I understand your feeling that you have the "too many medical appointments syndrome". Just curious did you go through the radiation treatment where you were isolated in a hospital room until it passed through your body? I felt that I might be glowing at night when this happened to me twice.

I look forward to any more comments so do not hesitate to reply.

Factfinder

nasher
Posts: 507
Joined: Apr 2010

Trust me I also understand. that is one reason I am fighting tooth and nail to figure out if I am BRAF positive or not.

yes I also am dealing with "too many changes in drugs syndrome" they put me on a new one for the vertigo then once I am at therapeutic dose they want to change my anti-depressant then once that has gotten to therapeutic dose they want to change my BP medicine... then ... so next 3 weeks or so i am going to be changing one med to another than another so i expect a few minor mood swings.

Julie-SunnyAZ is defiantly more knowledgeable on this topic than I am.

There is no GOOD cancer no matter what the doctors say. It’s not even good if it’s in your worst enemy, or your doctor who told you it was a “GOOD CANCER”.

Yes, I was got isolated in the hospital for my RAI "treatment" but I also work in the nuclear industry so I understand the glow worm feeling. It also did not make me easy when they set up a "2 hour per day line" at 6+ feet from my body.

Oh yea I am having side effects from this new med "gabapentin" so forgive me if my comments seem to be in a mood swing today.

Yes knowing too much about radiation is also not a good thing.

Defiantly see if they can test for BRAF mutation since it sounds like you may have it.

Craig

ASG
Posts: 4
Joined: Aug 2011

Hi nasher and factfiner,

I sat down to read a few posts.. it always makes me feel better to read there are others with problems like mine, and they say humor is the key to feeling good, Well I just laughed myself silly at the "too many medical appointments" syndrome! HAHAHAHAA, still smiling.

Have a good day, and hang in there!

Mary

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