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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.

BellsAngel69
Posts: 102
Joined: Dec 2009

I can't believe I shared my story and no one has even looked. I came here to share and for support. Anyone?

tonesgurl
Posts: 42
Joined: Dec 2009

BellsAngel69, I just read your story in another part of a post. I think it was 'thyroid cancer reoccurance'. Sorry to see no one responded to this post but you should go back and read the other one too. Don't get discouraged it took a while for me to get a response too so here I am ;) Lol

weberdns
Posts: 156
Joined: Mar 2010

I just started on this site after being diagnosed less than 2 weeks ago. I had 2 surgeries in 8 days and I am trying to get through many of these posts! I am so sorry that this has happened to you.....and hope that you get good news, clean scans, and opinions from the doctors that can keep you going! I am so sorry that you are going through this once again....and pray that this time treatment works for you!

JESSCLARK30
Posts: 5
Joined: May 2010

HI I JUST JOINED YEST AND READ UR STORY, IM SO SORRY U R HAVING TO GO THRU ALL THIS! HAVE THEY FOUND OUT WHATS GOING ON YET? DID YOUR SCANS REVEAL ANYTHING? I HAVE GOTTEN A CLEAN REPORT SINCE FEB10 AND THIS WEEK MY TG AND TGAB CAME BACK HIGH SHOULD I BE CONCERND?

csm2007
Posts: 25
Joined: Dec 2010

Hi, I am new to the boards; I was diagnosed in December 2010 with Hurthle Cell Carcinoma. I just had my final surgery to remove the remaining thyroid on Jan 28th. I am looking for others that have Hurthle and it is difficult! I am just beginning my journey; I have so many more questions than answers. If you have available time, please send me a message on the boards or contact me at csm2007@comcast.net. Thank you and best of luck to you!

tonesgurl
Posts: 42
Joined: Dec 2009

My name is Adrian,I am 37 and was dx with papillary thyroid cancer in July 09. I had 3 tumors in left and right side largest was almost 4cm so I had TT July 31. I was told that the cancer would be removed once the thyroid was taken out, NOT SO. After sugery I was placed on 75mg of Levothyroxin. August 5th I went for the follow up with the ENT (who performed the surgery) and was told the surgery went well and was passed on to an Endocrinologist. I had alot of questions for the ENT he said "My part is done, anything else you want help with you need to ask the Endo." Needless to say I was in shock and pissed off, they damn near had to have me escorted out of the building!
Sometime in October I went to see the Endo and was told the cancer was still there so I would need to have RAI, my levo was increased to 100mg. I have done alot of blood work as you all have too I'm sure. Then my levo was upped to 137mg. I have been having really bad hypo sypmtoms and I hate it!!!! Extremely tired, forgetful, everything hurts, I can go on but I won't. I had to go off the meds for 6 weeks before the RAI and the lovely LID was just great :( That was the worst 6 weeks I have ever experienced, anyone that has had to go completely hypo knows the feeling....LOL. I had RAI 160 millicuries on Nov 3 and the body scan Nov 12. When I went for the follow up to that my endo said there was no spread of the cancer but there was alot of residual tissue left over and the scan showed alot of spots???????????? OK and that means what????? I need help from u guys! If my cancer is resistant to the iodine what is next? My doc was hesitant to give me any real info, only telling me the cancer is STILL there and increased my levo to 150mg. So after being told that I have 'the best cancer to have' because it's the easiest to cure why am I not cured. I was told the surgery would remove it, then that the RAI would kill it, do we just live with this cancer or trully get cured from it? I don't have anyone that can relate to what I am goin thru right now and I need some advice.

BellsAngel69
Posts: 102
Joined: Dec 2009

I'm so sorry to hear of your diagnosis also. Make sure you get a good endocrinologist. Damn, that's the first thing I did, before I even had my thyroid out. As a matter of fact, the surgeon who did my thyroid surgery referred me to my endo doc.

My levo has been increased several times, and it took a while before they got it right. However, that has nothing to do with keeping your cancer from returning. It's your replacement hormone because your thyroid is gone.

There is almost always residual tissue and or cells left, because it's so hard to remove your entire thyroid without something being left.

I was told the same thing, it was the best kind of cancer to have, like I was shopping for a brand and thyroid was my choice. They also told me it was 99% curable, and I'd do very well after the RAI treatment, that it would kill the residual cells. However, because thyroid cells can grow back, there is always a chance it will come back.

It's very frustrating. And scary. Make sure you keep on top of it. Keep asking questions. Do research. Don't settle. If you need anyone to talk to, let me know.

I

tonesgurl
Posts: 42
Joined: Dec 2009

Wow, i learn something new everyday. I had no idea thyroid cells can grow back :(
I went to the dr yesterday and my TSH is 32.9 and thyroglobulin is 6.8, my Levo has increased again to 200mg. I have had it!!!!!!!!!!!! The dr was stuttering and didn't give me straight up answers, I feel. I asked him whats next he said possibly another round of I131. Any suggestions or advice?

BellsAngel69
Posts: 102
Joined: Dec 2009

why he keeps increasing your levo? My doctor backed me off a little because he said the higher the dose, the more thyroid hormones and that's what can stimulate cells to grow back.

I'm kind of lost myself. I just had my first thyrogen injection in preparation for my PET scan. I'm still on this damn diet and I'm so drained, physically and emotionally. I'm wiped out.

1nathaliakarina
Posts: 13
Joined: Nov 2009

Last week I went thru the Thyrogen part of the treatment. Monday and Tuesday I had the shot and Wednesday I did the I-131 of 5 mci. Which was low dose. This is for a body scan after six months of total Thyroid removal. Let me tell you. I feel worse than the first time I did the treatment. I do not know why. But, just felt and still feel so drained, physically and emotionally. So I can totally understand you.
I am currently on 250 mcg of Levo. What you said concerns me because my Endo has been increasing my doses every 6 weeks. I will definitely ask him about more chances of cells to grow back with a high doses.

All I can recommended is to just take it easy and just relax. Just think that soon it will be all over at least for that part. And you will be back to somewhat normal. I wish you the best of luck. You will be just fine.

BellsAngel69
Posts: 102
Joined: Dec 2009

so much. This is the fourth time I've done the low-iodine diet, and always for the total body scan. I think maybe it's the combination of the scans, I don't know. I came home today, did a little shopping, forced myself to not go sleep. I then slept for 3 and 1/2 hours. It was broken sleep, because my daughter had friends over and I heard them laughing, but I was so tired it didn't matter. I forced myself to get up and eat something, even though I was hungry, I felt a little nauseous while eating. The problem is in prep for the PET scan, my diet is further chiseled down. No carbs, caffeine, sugared drinks. The no carbs is the only one that bothers me. I was going to have pasta for dinner, but nixed it.

Tomorrow is my PET scan, but I still can't go back to my regular diet until after my scan on Friday. I am miserable. I just want to eat dammit! No matter how they slice it, this diet sucks big time.

tonesgurl
Posts: 42
Joined: Dec 2009

Wow my doctor said 200mg was unusually high for patients to take and you are on 250? Did you dr say why so high?

tonesgurl
Posts: 42
Joined: Dec 2009

Hey BellsAngel69,

I asked him why he keeps increasing my Levo and he said because my TSH is still too high so the higher dose of meds will (or should) bring my numbers down so I am not Hypo anymore. My hair is still falling out, ALOT, I am tired, frustrated, grouchy, emotional,ect..

I understand how you must feel wiped out and all the accompaniments.....Just be happy you didnt have to go off the meds, that proved to be really difficult for me. Imagine how you feel now but ten times worse, that should be close to how it is when you're off the meds.

Let me know what happens with your PET scan. I have never had one of those, what's it for?

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Hi, just wanted to add my support! I am just at the beginning of this journey, post two surgeries (no more thyroid!) for papillary Ca, am now in my bedroom 3 days after RAI. and hoping that this is the end of it...............I have a total body scan next week.
Staying positive

sandy

BellsAngel69
Posts: 102
Joined: Dec 2009

for recurrent hurthel cell cancer. My Tg have been elevated for the past three years. It had metastisized to my right hip. I had surgery to remove the dime-sized lesion, and thought I was past it. However, my Tg level keeps rising, and has gone from 15 post surgery, to 29, and when I had my last blood test in November, it was 130. That is extremely high and usually indicates a reoccurance.

So, my docs ordered a PET scan, and a RAI low-dose full body scan so they can compare to see what shows.

Well, my PET showed something very unusual. A spot on the inner curve of my stomach. Now I'm no expert by any means, but I've done enough reseach to know that it is unheard of for HCC to go to the stomach. However, my doctors are thinking in might be a cluster of lymph nodes either behind or attached to my stomach. Certain sites are good hosts for thyroid cells to attach and grow, usually the bones, lungs and lymph nodes, but as far as my doctor knows, he's never heard of it going to the stomach. My scans were clean otherwise.

So, now I find myself in this scary situation. If it isn't HCC, then it could be something worse, like stomach cancer. I don't want to be negative, but there is definitely something there, they just don't know what it is. My doctors are hoping that it is HCC, because if it isn't then they have no idea why my TSH is so high, and I will have another issue to deal with on top of elevated TSH and no known source.

I admit, I freaked out, totally lost it. I wasn't expecting to hear there was something in my stomach.

Now I have to have a CT scan of my stomach, and an endoscopy. Hopefully between both, they can figure out what it is.

I'm a little better now, but I'm still a little scared. I'll know in about two weeks what they find. My CT scan is the 22nd and my endo is Feb. 2nd.

Until then, I'm living on the edge.

BellsAngel69
Posts: 102
Joined: Dec 2009

for recurrent hurthel cell cancer. My TSH have been elevated for the past three years. It had metastisized to my right hip. I had surgery to remove the dime-sized lesion, and thought I was past it. However, my TSH level keeps rising, and has gone from 15 post surgery, to 29, and when I had my last blood test in November, it was 130. That is extremely high and usually indicates a reoccurance.

So, my docs ordered a PET scan, and a RAI low-dose full body scan so they can compare to see what shows.

Well, my PET showed something very unusual. A spot on the inner curve of my stomach. Now I'm no expert by any means, but I've done enough reseach to know that it is unheard of for HCC to go to the stomach. However, my doctors are thinking in might be a cluster of lymph nodes either behind or attached to my stomach. Certain sites are good hosts for thyroid cells to attach and grow, usually the bones, lungs and lymph nodes, but as far as my doctor knows, he's never heard of it going to the stomach. My scans were clean otherwise.

So, now I find myself in this scary situation. If it isn't HCC, then it could be something worse, like stomach cancer. I don't want to be negative, but there is definitely something there, they just don't know what it is. My doctors are hoping that it is HCC, because if it isn't then they have no idea why my TSH is so high, and I will have another issue to deal with on top of elevated TSH and no known source.

I admit, I freaked out, totally lost it. I wasn't expecting to hear there was something in my stomach.

Now I have to have a CT scan of my stomach, and an endoscopy. Hopefully between both, they can figure out what it is.

I'm a little better now, but I'm still a little scared. I'll know in about two weeks what they find. My CT scan is the 22nd and my endo is Feb. 2nd.

Until then, I'm living on the edge.

tonesgurl
Posts: 42
Joined: Dec 2009

BellsAngel69,

I am so sorry to hear your journey with cancer has been a long and hard one. I couldn't imagine going through all that you have. I pray that you will have a speedy recovery, I know things are hard for you right now but I am going to keep it positive for you and hope that things will change for the better.

Your sister in Cancer,
Adrian

BellsAngel69
Posts: 102
Joined: Dec 2009

Thanks so much. Now after the CT scan they think it's on my liver but still not sure because they only had the paper report and not the actual scan. Now I have to have an MRI and liver biopsy. Then hopefully they'll have the whole picture. This is so messed up. I'm in shambles. I've always been optimistic, but now I've had every rare thing to be classified in I'm beginning to shake a little.

Anyone else ever had it mestatisize to the liver?

Niky
Posts: 2
Joined: Jan 2010

Hi BellsAngel69 (and everyone out there!) Cancer is a royal pain in the butt and really scary, so I can sympathyze with you. I'll share my story some other time, but I'm also a Hurthle cell girl, with 2 surgeries (one for recurrence) and had EBR treatments (external beam radiation). I'll tell you all about it some other day.

FOR THE MOMENT, I just want to let BellsAngel know that there have been significant developments in the treatment of cancer in the last couple of years. I don't know where you are located/treated, but there are many places that are conducting new clinical trials with a new set of drugs of the "angiogenesis inhibitor" category -- as a quick definition: angiogenesis is the process by which tumors grow: they need blood to make & feed cells, so they generate new veins and capillaries.

There are a set of new drugs which were discovered for some other cancers but are being tried for thyroid cases with great success. They stop the growth of tumors by inhibiting this blood supply growth. There is also another category called "thyrosine kinase inhibitors". Many of these new treatments are in clinical trial phase but they are showing good results.

You can read more about these new treatments at: http://www.cancer.org/docroot/cri/content/cri_2_4_6x_whats_new_in_thyroid_cancer_research_and_treatment_43.asp

BUT, these are just some of the new things out there. I believe with all my heart that new therapies are on the way and non-traditional complementary therapies are also GREAT for slowing down or eliminating cancer while also fortifying the body.

Besides medical follow ups, I'm also doing some of these additional things. For one, I've changed my diet radically to eliminate all processed sugar (no cookies, no ice cream, etc.) I do eat fruit, which has sugar. Also: eliminate all processed foods. All of this helps your body's own cancer-killing mechanisms.

Sorry for the long post, just wanted to give you a perspective of hope. Not unwarranted hope -- there are solutions. Chin up and best wishes.

I'll post my discoveries as I continue to research this field as I too need to keep the beast at bay!

Love,

Niky

csm2007
Posts: 25
Joined: Dec 2010

Hi, I am new to the boards; I was diagnosed in December 2010 with Hurthle Cell Carcinoma. I just had my final surgery to remove the remaining thyroid on Jan 28th. I am looking for others that have Hurthle and it is difficult! I am just beginning my journey; I have so many more questions than answers. If you have available time, please send me a message on the boards or contact me at csm2007@comcast.net. Thank you and best of luck to you!

BellsAngel69
Posts: 102
Joined: Dec 2009

The FNA biopsy was negative, but the pathologist knew enough to slice the sample and stain it, and low and behold, the stain showed hurthle cells. Metastasis to the liver is very very rare, 0.5%. I've been researching my ass off and have foud five measly "articles", if you can call them that. There's nothing out there it's so rare. My endocrinologist doesn't want me to wait, has referred me to a liver surgeon, and it looks like they are going to take out the left lobe of my liver. On the good side, the lesion was much smaller than the stupid tech who took the CT scan first reported. He/she said it was 6 x 9 cm, which is pretty big, and it's much smaller, only 2 cm.

I'm still heading to Johns Hopkins post surgery for a follow-up and meeting with a new doctor to take over my case.

In researching, I found the hurthle cell cancer of the thyroid is very rare, but the most likely kind to present with a metastasis. 34% of people diagnosed with HCC are likely to have a reocurrence sometime in the future. And once you have one reocurrence you'll probably have more.

So, is it still the "Best kind of cancer to get?" I want to beat every stupid doctor who says that!

I've decided that this is just a bump in the road, as I said before. My liver surgeon is young, but very knowledgeable and has studied at some great hospital with cutting-edge innovations. I might be a candidate for laproscopy surgery. The lesion is right in the front, middle of my left lobe, very accessable. We'll see. I still have to have my consultation. My endocrinologist doesn't want me to wait since the lesion has gotten so much larger in such a short time, from undetectable to where it is now. He did tell me I could get a second opinion or wait to go to Johns Hopkins, but it took almost two months to get me an appointment, and it would take longer to get surgery scheduled there. I just want it out of me. I want to have normal blood tests again. I want remission. I want sweet victory!

saml1992
Posts: 4
Joined: Jan 2010

hey im sorry to hear that you have had such a hard time with it all, i am 17 and have been diagnosed with hurtle cell cancer in my thyroid i am currently in preparation for my radio iodine treatment

any tips?

sam

BellsAngel69
Posts: 102
Joined: Dec 2009

Make sure you have a knowledgeable endocrinologist and nuclear medicine doctor. Ask questions, do research. Understand what they have as a plan and course of action for you. Try not to be overwhelmed. Being so young, you should do fine, but please understand this is something you'll have to deal with your whole life. If you don't feel comfortable with your doctors after a while, find another one, go to a cancer hospital that specializes in treating your type of cancer.

Stay positive. I have, for the most part, but it's hard at times, I admit. For me recently, especially since I had such a great initial diagnosis. But I do have faith this is just another bump in the roade and I will get through it.

Thanks everyone for your kind words of support. We are strong!!!!

sfl67
Posts: 55
Joined: Nov 2009

Just to let you know you are in my thoughts and prayers and wish you a speedy recovery from your surgery and good news from Johns Hopkins.

wendriful's picture
wendriful
Posts: 3
Joined: Feb 2010

I feel bad for you. I don't think that endocrinologists (even good ones) have a clue. I would love to see them descend to hypo-hell just once; mine was 144 before RAI; I was given 190.2 millicuries...Before I even got home, my neck tripled in size. I had gastric bypass (2003) and feel that was a huge factor. The radiology department told me that there was no way the pills could have metabilized that fast...tell that to my body.

YES, get a 2nd and 3rd opinion. Our bodies can only have SO much RAI; it is NOT good for us at all.

Please keep me posted.
Wendy

BellsAngel69
Posts: 102
Joined: Dec 2009

I met with my liver surgeon and I really liked him. He looked over my history and all my films very thoroughly, including talking to me in depth. He showed me the spots in question, yes, there was more than one, which is what they initially thought. It turns out there are three spots, 2 about 2 cm each and one is a speckling of tiny spots. Luckily they are all in the left lobe of my liver. He feels he can resect about 1/4 of my liver laparoscopically, which means minimally invasive, shorter recovery time. My surgery is set for March 24th. Although very rare, metastasis to the liver is possible.

So I have to look at the positives. They can resect my liver to get rid of the tumors laparoscopically. I will recover. The best part is he told me to go to Johns Hopkins and meet with them and get a second opinion. I was worried I would have to reshedule my appt. That was one thing that was weighing heavy on my mind. My local doctors have done the best for me so far, but I want to be a patient at Johns Hopkins in the future. I know they have clinical trials and new drugs and aren't available to me locally. I'm hoping they can find a treatment that will help keep my cancer for reocurring again.

The weight of the world has lifted off my shoulders. Although it's still a majory surgery, at least I have a plan now. The worst part for me has been all the testing and waiting. This has been going on since November, so I've been pretty stressed the past three months.

Now I can take a deep breathe and exhale and relax. I know I have a course of action to follow now instead of being in limbo.

I'll keep you all updated. Thanks for all the kind words of support.

Patti

loispol1
Posts: 84
Joined: Feb 2010

I really hope you find the right answers/help soon. I am thinking maybe I should go to John Hopkins to start, instead of having surgery locally. It is so hard making decisions about all of this. You have been through so much, my heart and prayers are with you. Your candid comments have helped me see clearly the seriousness of all of this. I can't figure out why Hurthle cell carcinoma is so hard to find accurate information about. Where do you find your strength? Thank you Patti for letting us know your trials and suffering. I have been waiting since the second week in December for some definite answers. Seems there won't be any coming for a very long while. There are so many "indefintes". Please keep us posted with your journey!
Thank you for being here!
Lois

Niky
Posts: 2
Joined: Jan 2010

Hi Patti -- good to hear you have a plan. MY BEST WISHES FOR YOU. I think the idea of plugging into Johns Hopkins is a good one -- as I said in my previous post, there are a lot of new developments, new clinical trials, new treatments coming out.

In the meantime: you have a course of action and sounds like a great surgeon.

I've been doing tests for elevated thyroglobulin all last week, will find out the results tomorrow. I know what you mean by feeling stressed out.

ALSO: EVERYBODY -- I'M READING A REALLY GOOD BOOK CALLED "ANTICANCER". Look it up. It's written by a doctor who had brain cancer (and recurrence) and beat it. He covers not only the conventional treatments but goes into detail on what one can do in life to prevent recurrence. It's an enjoyable read as well.

My best to all you guys!

loispol1
Posts: 84
Joined: Feb 2010

I spoke with Elaine and she said you made through your surgery okay? I really hope you are doing better now and I look forward to your next post here! You are an inspiration!
Smiles,
Lois

BellsAngel69
Posts: 102
Joined: Dec 2009

Well I had my surger on the 24th, and got home Monday. It took 3 1/2 hours, and they ended up taking 1/4 of my liver instead of the 1/2 that was mentioned at first, so that made me happy. The dr. looked at my liver extensively for any more tumors and didn't see any. However, he said the pathology showed about 11-12 spots compared to the 3 they had seen on the MRI. Mostly because one area had a bunch of tiny pinpoint tumors clumped together, so the original CT scan read it as one big tumor.

It was by far the hardest surgery I've had to endure. Even though my TT was a 6 hr. surgery, besides feeling tired and not having much of a voice after, I felt pretty darn good. I know this was a major surgery, but the 2-3 days projected in the hospital was way off. I spent 5 days there, and was still very sore when I left. They did the surgery laporoscopically, with six small incisions and one larger one, so that's amazing in itself, but the dr. put the major incision where a childbirth one would be, so I pretty much feel like I just had a c-section. I felt pretty good 2 days out, probabaly because I was still numb and had pain meds, the the 3rd day was the worst. If anyone has ever had any kind of abdomenal surgery, the gas pain is the worst. I've always had problems with that in the past, and this was the worst ever. I would walk like they said, then the pain would start and I would feel short of breath like I couldn't breathe and I would panic.

I finally turned the corner Sat. and by Sun. they let me have regular food, although hospital food is quite nasty.

My trip to Johns Hopkins was a week before and was amazing. I felt special from the time I walked in the door until the time I left. The dr. spent an hour with me, going over my history in detail, and he concurred with the treatment I've been getting home so far. He basically told me that Hurthle Cell cancer is a rare beast, it doesn't act like other kinds of thyroid cancer, and thus is unpredictable. He said the reason why doctors say thryroid cancer is one of the better kinds to get is because it is usually very treatable, even with a reocurrence, and you can live with it, because it is slow growing and can be tracked well.

He wants to see me in a year, and asked to have all my results and procedures forwarded to him so he can follow my case.

Besides JHH being amazing, I was fortunate enough to meet Elaine, whom I met here on this board, and was there for her three month visit. My husband and I and she and her husband had an amazing dinner and chat. We are definitely sisters in this fight. We also saw each other the next day at the hospital.

I'm hoping and praying this is the end of my reocurrences if not forever, for a very long time. After 2 in a three year span, I need a break. I need to be free of this for my sanity. I just wish I could wake up one day and say I'm free of this forever, but I know that will probably never happen. It could go into remission for years, which would be nice. I need to breathe.

I thank you all for your kind words of support.

Hugs, Patti

loispol1
Posts: 84
Joined: Feb 2010

So very glad to see your message! I am also glad you are doing better now, sounds like it was rough. I had endoscopic abdominal surgery for ovarian cysts, where they injected
air or is it gas into the abdomen. I remember it hurting a lot. Your surgery of course was probably much more involved. It is wonderful you were able to hook up with Elaine while at JH!
I really hope you get the break you are praying for, you deserve it! Who did you see at JH?
My TT is scheduled for next Friday, I have the feeling my allergies are not being taken seriously by the anesthsia staff, I may have to postpone or cancel until someone listens to me about this.

Well, take good care and hope you continue to feel much better everyday!

Lois

sfl67
Posts: 55
Joined: Nov 2009

Hi Patti,

Am so glad to hear from you and learn you are home and hopefully recovering quickly and completely. You continue to be in my thoughts.

Shelia

veronica57
Posts: 98
Joined: May 2010

Wishing you the best.

weberdns
Posts: 156
Joined: Mar 2010

Was diagnosed on March 10th with Hurthle Cell. Thyroid surgeries on 3/4 and 3/12 and having RI starting with the test shot on 4/26.....treatment dosage on 4/29

sfl67
Posts: 55
Joined: Nov 2009

weberdns,

I wish you well with your upcoming treatments. Stay positive and try to not become discouraged with all of this at once. You will continue to be in my thoughts as you go forward.

Shelia

weberdns
Posts: 156
Joined: Mar 2010

Some days are good, some days are bad. I now have my RI scheduled to start the 26'th of April with a test shot, body scan, and then the full dose starting on the 29'th. Right now I'm so anxious and scared at the same time to find out for sure if any mets show up on the scan and get a better idea where I stand right now! With 2 kids....age 14 and 19 I'm terrified that I won't live to see them grow up, so I fight thisi thing inside of me....telling it that I am not going to die! I have too many people who depend on me, I fight on!! One doctor was totally negative about my diagnosis and treatment, while another one feels that things will go well. I'm sticking with her! My pastor says one day at a time....but some days....especially on the tough days it's so hard. Thanks for the prayers and the good thoughts! I feel like I can never have too many of those at this stage of the game!

Hope that you are feeling better after your surgery and are up and around living your life as soon as you can!

BellsAngel69
Posts: 102
Joined: Dec 2009

I'm still recovering, getting better every day. The hardest part is I'm not the type that likes sitting around or being limited, especially when it comes exercising. I'm walking or riding a bike every day. I tried to do some weights, light ones, and so far so good, but I'm gonna stick to the walking and riding for a while. I tried a new machine at my gym and it was really stiff. I'm still sore from it.

All we can do is stay positive. Truthfully, I used to breeze in and out of my endocrinologists office and never twice about my blood tests. Now I'm tentative and on pins and needles until my blood tests come back, which usually takes three weeks. And just when I think I'm home free I get the call my TG is elevated again. I hope and pray this time it's knocked way down. They told me my TG may never be under 1 again with two reocurrences. They could be wrong. I hope so. That's all I can do.

loispol1
Posts: 84
Joined: Feb 2010

How are you doing ? Feeling any better now? I really hope so. You are an inspiration to all of us here, you maintain such a positive spirit, which can only serve to heal and help others! I am glad you are here sharing your story. You are in my prayers as well as the other people here. I hope they are wrong about your TG blood tests, but, hey you have been through so much and you seem to be doing well in spite of it! I keep thinking that if my situation turns out to be malignant, I have read your messages and imagined what you have been through. If I have to, I can do it also. Since I have a role model for what I might need to go through in the future, Hurthle cell "whatever" is very much less scary to me. Thanks for keeping your post up and I hope today was a good one for you! With what you have been through, one little 'ol TT seems simple by comparison! Smiles, Lois

BellsAngel69
Posts: 102
Joined: Dec 2009

I hope you're getting the help you need. If I remember correctly, you haven't even had your thyroid out yet. I hope they've diagnosed you and have a course of action set. Having a TT for thyroid cancer is the best way to get things under control.

Thanks for the compliments on me being a role model. I can't say I have all the answers, I just try to stay in control and handle the situation at hand. I have my good days and bad days, and I try to stay on an even keel with my emotions. All any of us can do is try to stay positive and believe we can get through whatever challenges are presented us.

We have to stay strong and carry on!

loispol1
Posts: 84
Joined: Feb 2010

I am feeling somewhat optimistic again. My MRA for possible blood clot is over and I am moving closer to surgery. I have seen all of my medical specialists now and I feel confident I will get through this. I didn't have the anesthesia testing help I desired but somehow I just don't have it in me to try to pursue that route any further, I really do want the surgery behind me now. Yes, about the TT, I can't even imagine taking the right lobe and isthmus and leaving over four other nodules behind in the left lobe? What for? I hope my surgeon looks at everything and takes what he needs as far as lymph nodes go. I can't figure out the ATA recommendation now is on that?

Are you feeling better? It has to have been a longer recovery period? I saw at the thyca discussion group someone else was going to Dr. Ball at Hopkins, did I remember this correctly? I am so glad you got there and are receivng the treatment you need! Meeting Elaine had to be a very positive experience also! Smiles and thank for the response. With having had all of this thyroid mess since 1993, I can't help thinking something isn't right in there. Hey, wouldn't it be great if they took out my thyroid and found that it was causing all of my allergies?(wishful thinking)! At least I will know what is going on! Take care, Lois

weberdns
Posts: 156
Joined: Mar 2010

getting answers and moving on!! Good luck and keep us updated!

loispol1
Posts: 84
Joined: Feb 2010

Looked for a post from you but haven'teen any since Monday. Ihope all is going well? I have doc app't today. I am so sick of waiting to get this over. Yesterday had a simple (what should have been simple) blood draw for blood tests (whole battery of thyroid, Vit D level and liver, chloseterol & A1c). There was a new supervisor in the lab that took everyone before me although I was there first. Then she couldn't read my doctor handwriting, had to call his office, finally I told them I was going to have to leave as I didn't feel well (fed up with medical stuff and fasting). Long story short, they terrorized me -first tech reused a vein she just had drawn blood drawn from. I have a blood clotting disorder and that clotted right up of course & was extremely painful. She was annoyed at my latex allergy and request for a butterfly. She then started banging things around and developed an attitutude, got the supervisor who told me she was going to draw my blood but she was going to use a huge regular needle. I re-explained that I have vasculitis, small veins that roll and a clotting disorder and it would be too painful for me & my doctor told me to always request a butterfly. She then threatened to use my hand. I really had enough at that point. I had already tried to leave twice, but they told me not to go, finally another tech came in and used a new butterfly in my other arm, and got all the blood she needed with one stick. It seems they were more upset about the cost of using new non-latex materials and butterflys than my comfort or safety. Oh the supervisor also took her unwashed finger and touched the open vein that had just been unsuccesfully opened without any glove or handwashing! This ordeal took over three hours! They probably didn't even do all the tests my doctor ordered! I am so very sick of all the medical stuff..especially when I have experiences like these. Guess it was a bad day yesterday!

weberdns
Posts: 156
Joined: Mar 2010

Got lots of calls from friends during the 2 days of isolation wtih my scan does. The days just flew by. Yesterday spent the day with my hubby, daughter and doggy as it was ok to be around people and hug!

Make sure to send a letter of complaint to the facility as well as your insurance company! No patient should be treated like this! Hey things can only go up right?!?!?

loispol1
Posts: 84
Joined: Feb 2010

I did call and found out they held up my thyroid tests for two days as they seemed to need to call my doctors office over and over. I am thinking they were trying to illimate some of my tests. I also worry that holding the blood and not sending it immediately for testing could cause incorrect results. When I complained I was told they were going to call the lab where I went and tell the personel there I complained. It does absolutely no good to complain here in Florida. It is take it or leave it and i am so sick of it. Also, my tests are not back yet because they held them up. I may take this matter to the highest level, if it is even worth it, I really do not have the energy for this.

On a more positive note you only had 2 days of isolation? Wasn't it going to be longer than that? I am really confused by all of this. You sound like you are doing very well, any side effects so far? I truly hope not and you are on the way to total recovery now!

weberdns
Posts: 156
Joined: Mar 2010

I had 2 days of isolation for the test dose, out for 1 day, then in for 7 days for my full dose. I am having minimal side effects. Mild headache, nausea, and fatigue, but all in all not bad. I still have 4 days of isolation left until Thursday afternoon.

loispol1
Posts: 84
Joined: Feb 2010

I am so glad things have gone so very well for you! Thanks for explaining the "in's and out's of all of this! Have you started back on thyroid medication, or when does that occur? I am really praying that this knocks the hurthle cell out of the ball park for you!

weberdns
Posts: 156
Joined: Mar 2010

72 hours after my full dose I was able to start back. Misread my instructions as they were confusing and thought it was 72 hours after the final scan. Not after the dose, but I'm back on track! Also off LID!! Yippee! Feeling so much better already! Thanks for the prayers! I'm hoping that for me as well!! will keep you updated!

loispol1
Posts: 84
Joined: Feb 2010

Hope you will start feeling less hypo and much better soon. It seems you did very well with only minor side effects? Are you out of seclusion yet? Lois

BellsAngel69
Posts: 102
Joined: Dec 2009

I found out a week ago Saturday that my thyroglobulin is undetectable, for the first time in three years, which means I AM CANCER FREE!!!!!! I never thought I would hear those words. Although I know it can still come back I thank God for answering my prayers and for all the good doctors who treated me for this outcome. I can finally breathe.

Never say never and never give up. There is always hope and miracles do happen.

loispol1
Posts: 84
Joined: Feb 2010

Yay!!! I am so delighted to hear this, with all that you have been through! I'm so happy for you!!!
Lois

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