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Recurrent Hurthle Cell Thyroid Cancer - my story

BellsAngel69
Posts: 102
Joined: Dec 2009

In Dec. 2003 I found a lump in my neck under my collar bone, purely by chance. It was an enlarged lymph node and I had it removed. I was then diagnosed with Thyroid cancer. I had a total thyroidectomy, then the RAI treatment. For the next two years I did the low iodine diet and uptake scan, and I was clean. The following year my doctor let me skip the scan because my TSH levels had been undetectable. I saw my doctor every six months and had blood tests the whole time and had been fine. Six months after skipping the scan I went for blood tests and my TSH levels were rising. They put me on the diet and did another scan. Not even five minutes after I left, they called me on my cell to ask if I could come back. They wanted to do something else. I was thinking, what the hell? I went back and they did another scan. When the results came back, it showed uptake in my left posterior hip. Next, I had another RAI treatment in the hospital to take care of the reoccurence. After, I had another scan and it showed I was clean. Six months later, I had another blood test and my TSH levels were even higher, so they ordered a PET scan. The PET showed the same spot in my hip. The RAI didn't absorb into the bone, so it was ineffective. I had surgery a few months later to remove the dime sized spot on my bone. Post surgery, my TSH levels hadn't changed, but they weren't concerned. Six months later, my blood tests showed my TSH levels were even higher so I had another PET scan. It was clean and they sent me on my merry way. I just had another blood test in Nov., and after three weeks my doctor called to tell me my TSH level were FOUR TIMES higher than before, in only six months. I totally freaked out. The PET scan showed nothing but my TSH levels are jacked way up. Now, I'm on the low idodine diet yet again, and they are going to do both a PET scan and and low-dose RAI scan to see if anything shows.

Truthfully, I won't be convinced this time if the scan is clean. I'm going to seek out another doctor for another opinion. I don't care where I have to go, or what tests I have to have done, I won't be satisfied. My TSH level is 121. Back in May it was 29. When my level first started to rise, it went from 2, to 4, then 9. My doctor didn't even tell me my TSH was elevating until it went up to 9. I felt betrayed and told him that I had the right to know. He said it wasn't that high so he wasn't too concerned. The bottom line is it should be zero and when it was rising he didn't tell me. Post surgery my level was 15, then 29, now it's 121. So if the scan says I'm clean, I'm not going to believe it.

I'm very frustrated, but have kept upbeat this entire time. I admit, I've had my bad moments, but I'm not going to let this beat me. The hardest part is the initial diagnosis was so promising, and here I find myself with my second reoccurence in two years, and it just makes me so angry. They paint this rosey picture. They told me thyroid cancer is 99% curable and very treatable, yet I find myself in this situation.

I'm 49, I was 43 when diagnosed. I have an 18 year old daughter in college and a 16 year old son in high school. I plan to live a long, happy life, long enough to be a pain in the butt to my kids. Hey, what goes around, comes around, you know?

I just hate the waiting part, and there is always a seed of doubt in the back of my mind. Is it gone, or still there, lurking, waiting to rear it's ugly head again?

It's hard, but I'm so happy I've found this place for support. I'm sure it will make all the difference in the world.

No matter what your doctors say, don't settle for an answer. If you're not happy with what they're telling you, get a second opinion or as many as you need until your satisfied.

Hurthle Cell cancer is a very tricky disease. It can come back, so you should always follow through with tests, and don't ever think it's totally gone, because chances are somewhere down the line it will come back. It's just a matter of when and where. I'm not trying to be pessimistic, but it't the truth.

mollyd350
Posts: 4
Joined: May 2010

wow! That is such great news. I've been thinking of you and hoping you were getting through things. Inspirational. Thanks for sharing.

M.

mgnewton
Posts: 1
Joined: May 2010

I was diagnosed in 1992 with right lobe folliular thyroid cancer. I was treated 3 times with RAI, it later came back in my T-spine. I went to a clinic out of the country for autologous vaccine. The spot on my spine is still there but inactive. Don't give up hope, it has been 18 years since my diagnosis and I am still here. You are being sent a special prayer from me, each day at 9:00 pm MST I will pray for you and a complete healing. Don't let Dr.'s minimize you, be proactive and positive, I kno it is a fearful time for you but I am here. Sincerely GN

imlovesem
Posts: 1
Joined: Sep 2012

Hi everyone! In 2008 i had the left lobe of my thyroid removed. They told me it was called Hurthle cell cancer and that i should not worry bcuz thhyroid cancer was the best cancer to get. my endo at the time was furious bcuz she recommended i have a total thyroidectomy as to avoid reoccurence. After my surgery they told me she would no longer be my endo and my primary care doctor (who by the way is a nurse practitioner) would be prescribing my Levothyroxine. She had me on .50mcg of Levo and i still felt like crap! i never felt the same again. in 2009 i had surgey again to remove a large swollen lymph node near my left ear lobe. i still felt like a 90 yr old lady (i was 35 yrs old). after that they kept me on .50mcg of Levo and in 2010 (feb) i went to urgent care bcuz i could not take the pain in my body anymore and was tired all the time. i also had discomfort in my throat. i felt like my right side of my neck was swollen. got a FNA and they sais itt was malignant again but it was small so it was fine....

AmandaJo1983
Posts: 2
Joined: May 2012

I was diagnosed with hurtle cell cancer in May 2012. Did RAI in July. My first labs were really good prior to RAI my TG level was 0.1. Now starts the journey of labs, ultrasounds, medication adjustments and frequent Dr visits. When my 2nd biopsy came back with hurthle cell neoplasm my endo gave me the outline of what would happen if was benign vs cancer. From what she told me if it was benign then she would see post-op in 2 months then my tsh levels would be monitired by my primary doc if it was cancer then endo would continue to follow me for labs, ultrasounds, scans and medication adjustments. You need to find a new endo. I really like my endo and is very proactive in my plan of care but if things change or I'm not getting the answers I need I will change doctors and since I live about 2 hours from the Mayo clinic I will go there, they have an excellent endo department. Hurthle cell cancer is a rare cancer and treatment for it is different in some ways from other throid cancers. So if your doctors is not proactive in your care and (you need to be proactive also) you need to find someone who is. Please let me know how everything is going.
Amandajo

marie.r
Posts: 2
Joined: Oct 2012

Dear bellsangels
I am new to Hcc and just found your posting. I am thinking of you and wish you the very best. How are you doing?
Thinking of you

raininspain
Posts: 1
Joined: Dec 2012

Hi all, well I discovered my thyroid cancer from watching Dr.Oz, I had been diagnosed with hypothyroidism in 2001, age 35, I had thought I was pregnant as i had milk coming out my boobs, had a pregnancy test which came back negative (luckily) but that i had a very low thyroid.
They put me on synthroid which I was on for 5 years and felt like total crap, I did my research and found that people felt so much better on dessicated thyroid (erfa in Canada where I was). Anyway my family doctor refused to put me on it as he said it was old fashioned etc,( for the record he never sent me to a specialist at any time) I had read he would tell me this so i insisted and he made me write and sign that he didnt want to give it to me but I insisted.
It was like night and day, within a few days I felt like myself again, I couldn't believe it, I started losing weight, I felt lively,, happy and needed alot less sleep.
Anyway at the beginning of 2011 Dr Oz was doing the thyroid cancer test where you swallow water while looking in the mirror, my daughter and I were horrified to watch a lump the size of a golf ball in my throat,( no doctors ever bothered to feel my neck when I went for repeat prescriptions) I went straight to the walk in clinic near me and was sent to a specialist for a scan and biopsy. I was told its most likely cancer because of the size of it.
On the 1st April 2011 I had a TT, the results didnt come back until June that it was hurthle cell, I did extensive research which showed RAI only has a very small chance of getting rid of hurthle cell but the high dose of radiation can cause other cancers and problems.
I opted not to have it, going against my specialist, it hadn't spread to my lymph nodes and I really didn't want to poison my body. They said if I had it I would have to carry a card for 6 months as I would set off the radiation detectors at the airport, that was so scarey to me knowing that it would still be in my body for 6 months.
I have had regular scans and blood tests and everything is fine so far.
I just moved back to UK after living in Canada for 19 years, I was sent to Oxford to see the oncologist who again was trying to get me to do the RAI, he hadn't even heard of dessicated thyroid and wanted to prescribe me synthroid, I said no way as it hadn't worked, he said maybe my family dr could prescribe it which he did, he was amazing and did all the research into it. There are chemists in Uk that carry it so I just need to send my prescription there.
Going into this I made sure I did all my research and wasn't going to be bullied into doing something I felt strongly about.
I would tell all of you to do research into dessicated thyroid , there are so many stories of people who got their life back after going on it and off synthroid.
My daughter was diagnosed with hypothyroidism at age 16, they had her on synthroid for 4 years,and kept upping her dose, she was depressed, tired all the time, constant headaches and just not herself. Two years ago I insisted she be put on dessicated thyroid and again, within days she felt 100% better, she's 22 now and going on it was the best thing ever.
Dessicated thyroid has both T4 and T3 which is what we need. The doctors are taught at university that it is old fashioned and the doses are not all the same and it is no good but that's not true, they teach this because the pharmaceutical companies can't make money on it unlike synthroid.
I'm not saying I won't ever have RAI because i might one day,especially after reading bells Angels experience,( I'm so glad you are feeling better ) I just think we all need to look into everything thoroughly because Doctors don't know everything thats out there.

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