Hurthle Cell Carcinoma
Comments
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Loisloispol1 said:I'll be thinking of you!
Actually, your sharing your experience has given me the most insight into all of this. It is interesting that you and your husband having been talking so much, that is great! I am also glad you are feeling better. When I am hypo I can't sleep at all hardly and feel horrible as a result of that. I'll bet you can't wait to be back on thyroid medication! Will you be posting all the way through your RAI & while isolated? I am very interested in how you you do through all of this. Thank you for writing me & sharing. I do not feel I fit in at the other group as I haven't my TT yet, and I don't have a diagnosis,as so many already have with papillary. I have tried posting there but only received a few answers. Interestingly enough, some with advanced hurthle cell cancer were kind enough to write me over there. About preparing for the RAI, did you not use Thyrogen hoping for the hurthle cell to better uptake the raidation? I really hope this works well for you and the hurthle cells are receptive! Well, I hope all goes very well tomorrow and you become less afraid of everything after that. Take care & God bless! Lois
My hubby knows how much he needs me now, so I think that this is the positive thing that has come out of this.....and so much more!! I can't wait to get this over and try to take control of my life...and get back to normal living! I will be posting throughout my isolation....computer in bedroom. I did not use Thyrogen to have a better uptake of the radiation. My endo felt that a longer time on LID and without thyroid meds would increase my chance for uptake for the first treatment! Right now I feel so so upbeat and so blessed! I have already received calls from friends, messages, e-mails...It is just amazing!0 -
Good Luck Today!weberdns said:Lois
My hubby knows how much he needs me now, so I think that this is the positive thing that has come out of this.....and so much more!! I can't wait to get this over and try to take control of my life...and get back to normal living! I will be posting throughout my isolation....computer in bedroom. I did not use Thyrogen to have a better uptake of the radiation. My endo felt that a longer time on LID and without thyroid meds would increase my chance for uptake for the first treatment! Right now I feel so so upbeat and so blessed! I have already received calls from friends, messages, e-mails...It is just amazing!
Finally the day is here! I swear the waiting is the worst part of all of this! So glad you shared your endo's feelings with me as to the LID and no thyrogen. I will be keeping that in mind should I need to go this route also. I am so happy there has been a very positive outcome in all this, with the renewed appreciation of each other in your marriage! That is great & exciting! Well, I look forward to your next post and I hope you have very few side effects today! Smiles & keep the faith! Lois0 -
Hurthle Cell Carcinoma
My partner has Hurthle Cell Cancer. 3 years now.
Iodine treatment did not work. Had three series of it but cancer metastisized to spine and lungs. Within 5 or 6 months after initial surgery, his C3 vertebrae has been totally destroyed. Had metal brace fixed to spine, next came radiation therapy, but brace came loose within 3 months.... Now we were in deep crap!... Found new surgeon in Montreal, which was a godsend. New surgery to fix original brace and add another in the back of the neck. This one held. But cancer already spread to lungs.
Tried chemo, but that didn/t work either. Next came NEXAVAR!!! This one works!!
Had the doctors tried that first, we may be in better shape today. At least the Nexavar is controlling the growth and spread of the cancer. Had been on it for a year and a half now. We know the cancer will never be in remission but at least we have more time.
This medication is hard on the body but if, as by friend did, you can tough out the hard moments, the symptoms diminish with time. Assume it has to do with the body adapting to the meds.
Not on the intenet often but will check once in a while. Ask your doctors about this medication... was specially designed for aggressive cancers.
Very expensive, unfortunately, and needs approval from insurance before it is accepted.
All I can say is had we had this option in the begining we would have a better outlook, but hope that this info can help someone else.
Remember that Hurthle cell cancer does not take up iodine well, therefore the iodine treatment and even the iodine scans are not very effective. We just had a scan to see if the cancer cells would absorb some of the iodine, (if it did we would have done another treatment of radioactive iodine to burn off those cells) but though we know where the tumors are and can actually feel a large lump on his neck, absolutely nothing showed on the scan!!
So don't be fooled by scans that show nothing...the only clear way to know if the cancer is still present seems to be blood tests and pet scans.
Wishing all of you the better luck than we had. Don't be afraid to do research and ask questions.0 -
danjo2, loispol, and weberdensdanjo2 said:Hurthle Cell Carcinoma
My partner has Hurthle Cell Cancer. 3 years now.
Iodine treatment did not work. Had three series of it but cancer metastisized to spine and lungs. Within 5 or 6 months after initial surgery, his C3 vertebrae has been totally destroyed. Had metal brace fixed to spine, next came radiation therapy, but brace came loose within 3 months.... Now we were in deep crap!... Found new surgeon in Montreal, which was a godsend. New surgery to fix original brace and add another in the back of the neck. This one held. But cancer already spread to lungs.
Tried chemo, but that didn/t work either. Next came NEXAVAR!!! This one works!!
Had the doctors tried that first, we may be in better shape today. At least the Nexavar is controlling the growth and spread of the cancer. Had been on it for a year and a half now. We know the cancer will never be in remission but at least we have more time.
This medication is hard on the body but if, as by friend did, you can tough out the hard moments, the symptoms diminish with time. Assume it has to do with the body adapting to the meds.
Not on the intenet often but will check once in a while. Ask your doctors about this medication... was specially designed for aggressive cancers.
Very expensive, unfortunately, and needs approval from insurance before it is accepted.
All I can say is had we had this option in the begining we would have a better outlook, but hope that this info can help someone else.
Remember that Hurthle cell cancer does not take up iodine well, therefore the iodine treatment and even the iodine scans are not very effective. We just had a scan to see if the cancer cells would absorb some of the iodine, (if it did we would have done another treatment of radioactive iodine to burn off those cells) but though we know where the tumors are and can actually feel a large lump on his neck, absolutely nothing showed on the scan!!
So don't be fooled by scans that show nothing...the only clear way to know if the cancer is still present seems to be blood tests and pet scans.
Wishing all of you the better luck than we had. Don't be afraid to do research and ask questions.
Dear Danjo,
I am truly sorry to hear this story, however, I would guarantee if you post his original pathology afer surgery he already had lymph involvement. While it is true that this type cancer does not uptake RAI131 very well, it is the only option. For me, it was to make certain that all thyroid cells were ablated.
So far, I have had a positive outcome and have blood tested every three months, full neck
ultrasound every 6 months. All treatment is done at Johns Hopkins, not where I live in south Florida.
I was diagnosed in early 2009 so about 18 months ago.
Please let me know his original TNM if you have it.
God bless and I shall keep you in my thoughts.
Also, I bought two medical textbooks and found studies done by two of my three doctors. I did a lot of research. This year I had Thyrogen and he did not order any scans except ultrasound. This is all due to TNM at initial diagnosis.
Elaine
P.S. Lois and Weberdens
I was not isolated except at night. I could spend short times around everyone except small children without direct contact. I was a guest at my sister's home since I don't live in Baltimore. For one week my husband and I could not share the same bed. I also avoided food preparation for the 2 weeks(nails looked beautiful)
Don't let this be more than it needs to be.
You should forever be concerned about further dental x-rays and the like. Ask for a pat down at airports, not the new scanners, which emit radiation. This is a radiosentive cancer.
Good to be back in touch after a short getaway!!
Elaine0 -
hi danjo -danjo2 said:Hurthle Cell Carcinoma
My partner has Hurthle Cell Cancer. 3 years now.
Iodine treatment did not work. Had three series of it but cancer metastisized to spine and lungs. Within 5 or 6 months after initial surgery, his C3 vertebrae has been totally destroyed. Had metal brace fixed to spine, next came radiation therapy, but brace came loose within 3 months.... Now we were in deep crap!... Found new surgeon in Montreal, which was a godsend. New surgery to fix original brace and add another in the back of the neck. This one held. But cancer already spread to lungs.
Tried chemo, but that didn/t work either. Next came NEXAVAR!!! This one works!!
Had the doctors tried that first, we may be in better shape today. At least the Nexavar is controlling the growth and spread of the cancer. Had been on it for a year and a half now. We know the cancer will never be in remission but at least we have more time.
This medication is hard on the body but if, as by friend did, you can tough out the hard moments, the symptoms diminish with time. Assume it has to do with the body adapting to the meds.
Not on the intenet often but will check once in a while. Ask your doctors about this medication... was specially designed for aggressive cancers.
Very expensive, unfortunately, and needs approval from insurance before it is accepted.
All I can say is had we had this option in the begining we would have a better outlook, but hope that this info can help someone else.
Remember that Hurthle cell cancer does not take up iodine well, therefore the iodine treatment and even the iodine scans are not very effective. We just had a scan to see if the cancer cells would absorb some of the iodine, (if it did we would have done another treatment of radioactive iodine to burn off those cells) but though we know where the tumors are and can actually feel a large lump on his neck, absolutely nothing showed on the scan!!
So don't be fooled by scans that show nothing...the only clear way to know if the cancer is still present seems to be blood tests and pet scans.
Wishing all of you the better luck than we had. Don't be afraid to do research and ask questions.
sorry for everything you and your partner have been going through? How old was your partner when diagnosed?0 -
Glad to help Lois!!loispol1 said:Good Luck Today!
Finally the day is here! I swear the waiting is the worst part of all of this! So glad you shared your endo's feelings with me as to the LID and no thyrogen. I will be keeping that in mind should I need to go this route also. I am so happy there has been a very positive outcome in all this, with the renewed appreciation of each other in your marriage! That is great & exciting! Well, I look forward to your next post and I hope you have very few side effects today! Smiles & keep the faith! Lois
Got out of my isolation after my first body scan for 24 hours! Dh , dd, puppy and I got to spend the evening together just hugging! It was so much fun! dd was at Girl Scouts and we were on the couch when she left, and were up in our bedroom with the dog.....when she came home she yelled and wondered where we were . We told her we were in the bedroom.....and told her to come up. Being 14 she just said gross....I'm not going up there. Told her to come up and she found hubby, dog and I in the bed snuggling together fully clothed! LOL!!! She joined the fun and we were all 4 together!
Today is the real dose.....also wanted to let you know that for each horror hurthle cell story there is a success story. I have a One on One who has been symptom free for 8 years now!! Gotta get to work...Have some laundry before isolation starts again!0 -
You are the second person to mention Nexavar!danjo2 said:Hurthle Cell Carcinoma
My partner has Hurthle Cell Cancer. 3 years now.
Iodine treatment did not work. Had three series of it but cancer metastisized to spine and lungs. Within 5 or 6 months after initial surgery, his C3 vertebrae has been totally destroyed. Had metal brace fixed to spine, next came radiation therapy, but brace came loose within 3 months.... Now we were in deep crap!... Found new surgeon in Montreal, which was a godsend. New surgery to fix original brace and add another in the back of the neck. This one held. But cancer already spread to lungs.
Tried chemo, but that didn/t work either. Next came NEXAVAR!!! This one works!!
Had the doctors tried that first, we may be in better shape today. At least the Nexavar is controlling the growth and spread of the cancer. Had been on it for a year and a half now. We know the cancer will never be in remission but at least we have more time.
This medication is hard on the body but if, as by friend did, you can tough out the hard moments, the symptoms diminish with time. Assume it has to do with the body adapting to the meds.
Not on the intenet often but will check once in a while. Ask your doctors about this medication... was specially designed for aggressive cancers.
Very expensive, unfortunately, and needs approval from insurance before it is accepted.
All I can say is had we had this option in the begining we would have a better outlook, but hope that this info can help someone else.
Remember that Hurthle cell cancer does not take up iodine well, therefore the iodine treatment and even the iodine scans are not very effective. We just had a scan to see if the cancer cells would absorb some of the iodine, (if it did we would have done another treatment of radioactive iodine to burn off those cells) but though we know where the tumors are and can actually feel a large lump on his neck, absolutely nothing showed on the scan!!
So don't be fooled by scans that show nothing...the only clear way to know if the cancer is still present seems to be blood tests and pet scans.
Wishing all of you the better luck than we had. Don't be afraid to do research and ask questions.
Will keep this in mind if I need it!0 -
Radio-iodinedanjo2 said:Hurthle Cell Carcinoma
My partner has Hurthle Cell Cancer. 3 years now.
Iodine treatment did not work. Had three series of it but cancer metastisized to spine and lungs. Within 5 or 6 months after initial surgery, his C3 vertebrae has been totally destroyed. Had metal brace fixed to spine, next came radiation therapy, but brace came loose within 3 months.... Now we were in deep crap!... Found new surgeon in Montreal, which was a godsend. New surgery to fix original brace and add another in the back of the neck. This one held. But cancer already spread to lungs.
Tried chemo, but that didn/t work either. Next came NEXAVAR!!! This one works!!
Had the doctors tried that first, we may be in better shape today. At least the Nexavar is controlling the growth and spread of the cancer. Had been on it for a year and a half now. We know the cancer will never be in remission but at least we have more time.
This medication is hard on the body but if, as by friend did, you can tough out the hard moments, the symptoms diminish with time. Assume it has to do with the body adapting to the meds.
Not on the intenet often but will check once in a while. Ask your doctors about this medication... was specially designed for aggressive cancers.
Very expensive, unfortunately, and needs approval from insurance before it is accepted.
All I can say is had we had this option in the begining we would have a better outlook, but hope that this info can help someone else.
Remember that Hurthle cell cancer does not take up iodine well, therefore the iodine treatment and even the iodine scans are not very effective. We just had a scan to see if the cancer cells would absorb some of the iodine, (if it did we would have done another treatment of radioactive iodine to burn off those cells) but though we know where the tumors are and can actually feel a large lump on his neck, absolutely nothing showed on the scan!!
So don't be fooled by scans that show nothing...the only clear way to know if the cancer is still present seems to be blood tests and pet scans.
Wishing all of you the better luck than we had. Don't be afraid to do research and ask questions.
My endo told me that the radio-iodine treatment didn't work but it was all we had. Have to try anyway. I will be having the pet scan in June and can't wait. What type of blood test do they do to show the Hurthle cell? Just interested if they should also be checking this. I haven't heard of blood tests for this before.
Karleen0 -
Hurthle Cell CAweberdns said:You are the second person to mention Nexavar!
Will keep this in mind if I need it!
I haven't written for awhile. Was diagnosed on February 23rd and they had to wait 2 months before taking the right side out which was 3 weeks ago. The right side came back non-cancerous, just the left side. I am on Cytomel now until May 24th when I go off and will also go on the low-iodine diet. I am nervous about that. I had to have my thyroid med adjusted as I wasn't feeling right and they TSH came back at 12.5, instead of 0.018 where it was before the 2nd surgery. I know we are all going through some rough times. I have an intermittent leave through work so when I don't feel right I can call in. I worked one night last week where my brain felt really muddy, which isn't good for an ICU nurse. I have my ablation on June 9th along with the scan. I can't wait to see if it is anywhere else. I am hoping that since it wasn't in the right side that it hadn't gotten anywhere else. The left side was large and I also did have Hashimoto's thyroiditis which was found at the same time.
9 days is alot for isolation. I was told only a week and to make sure you flush 3x after using the toilet.
Lois, I hope things start getting better for you.
Karleen0 -
question and concernedSisu61 said:Radio-iodine
My endo told me that the radio-iodine treatment didn't work but it was all we had. Have to try anyway. I will be having the pet scan in June and can't wait. What type of blood test do they do to show the Hurthle cell? Just interested if they should also be checking this. I haven't heard of blood tests for this before.
Karleen
Karleen
I have a Questiion: I had my thyroid taken out on April 20...Dr. thought I had thyroid lymphoma...what they found is no thyroid tissue left only Hurthle Cells fast growing...My Endo told me that I was lucky to have gotten the surg when I did because the cells were begining to change and become cancer...I asked if there could be any cells left that could attach them selfs else where in my body...He said that if the surg. took the whole thyroid out together then there is very little chance...I know the surg did two frozen biop. (rt & Lt) I know that the thyroid had already attached it self to my vocal cords and that it had to be cut away.(it has been almost 3 weeks sence my surg and still have hardly any voice...Surg said my vocal cords were badly brused and it could take up to 2 or 3 months before my voice will come back) then I also know from the path report that the Thyroid was taken out in 2 sections...There was no parathyroid tissue taken out....What are my odds of this turning into cancer...not knowing if there were cells left behind or part of the thyroid left behind...What should I watch out for??? Dx was severe Hashimoto's thyroiditis
RT was 4.7 x3.5x1.3
Lt was 4 x 2.5 x 1.5
any information would be great
thanks
Yetta0 -
Blood testfishery said:question and concerned
Karleen
I have a Questiion: I had my thyroid taken out on April 20...Dr. thought I had thyroid lymphoma...what they found is no thyroid tissue left only Hurthle Cells fast growing...My Endo told me that I was lucky to have gotten the surg when I did because the cells were begining to change and become cancer...I asked if there could be any cells left that could attach them selfs else where in my body...He said that if the surg. took the whole thyroid out together then there is very little chance...I know the surg did two frozen biop. (rt & Lt) I know that the thyroid had already attached it self to my vocal cords and that it had to be cut away.(it has been almost 3 weeks sence my surg and still have hardly any voice...Surg said my vocal cords were badly brused and it could take up to 2 or 3 months before my voice will come back) then I also know from the path report that the Thyroid was taken out in 2 sections...There was no parathyroid tissue taken out....What are my odds of this turning into cancer...not knowing if there were cells left behind or part of the thyroid left behind...What should I watch out for??? Dx was severe Hashimoto's thyroiditis
RT was 4.7 x3.5x1.3
Lt was 4 x 2.5 x 1.5
any information would be great
thanks
Yetta
The blood test in question would be your thyroglobulin. This is the carcinoma marker they use in HCC.
Good luck and welcome to all the new peolpe who have joined!!
Elaine0 -
New ....samanjan said:Blood test
The blood test in question would be your thyroglobulin. This is the carcinoma marker they use in HCC.
Good luck and welcome to all the new peolpe who have joined!!
Elaine
Hi,
I just wanted to introduce myself. I was dx'ed in Sept. of '09 with HCC after removing 1/2 my thyroid - I'd had nodules for years since my 20's and I'm now 50. (I've also had four negative biopsies in the past ten years). The removal was because it seemed to be growing, and my endo wanted it out. Unfortunately, they found a 6cm hcc - though it doesn't seem to have spread. They apparently had difficulty diagnosing it, so by the time they found out, I was too far out of the intial surgery to go back in and have the TT.
I transferred to Mayo, because I live in MN and I could - seemed like a good idea. Surprisingly Mayo docs didn't seem too urgent about me. Their take is mine seems to be slow growing. Seriously, I have no idea how they come to that conclusion and think it's bunk, but anyway...
I suppose I worry about what everyone does. Just because there isn't evidence of spread, the realtiy is we are dealing with microscopic cells. It's spread, or it hasn't - I'm glad there's no evidence, but I guess only time really will tell. And, it is weird to get different takes on this cancer from my docs. My regular endo was aggressive and uber serious about treatment regimines. She concurred I should go to Mayo - and they were kind of calm about the whole thing - really believing surgery was curative for me. However - they seemed a little more alarmed about the tiny papillary spot, whereas my regular endo basically said pretty much everyone has these tiny spots ....
Anyway, I'm of the mind better safe than sorry - so my approach is to be vigilent, self advocating, and pretty aggressive.
And, I realize that medical professionals aren't gods. I literally watched as they did the FNA's, knowing they got the tissue ... and still after four times, they did not find the HC. Scary really.
I had the rest of my thyroid removed in January. They found a tiny spot of papillary cancer in the other lobe - again they weren't concerned at all. My ct scans of head and lungs were clear - ultrasound too.
I had the radioactive iodine in March after the low iodine diet, and much like others have written here - it was fine. Isolation, changing food, etc., but in the big scheme of things no big deal.
I just had labs done a couple of weeks ago. I'm a little confused about the numbers they look at - my Thyroglobulin is 0.1, which seems to be good. My TSH is 1.14 - and my levothyroxine was upped to 150 as I think they want that number at 1 or below .... but I really am not sure.
I have an ultrasound in August. To be honest, I'm scared. At the time of the initial dx - my friends banned me from the internet (and I complied after one horrible night). At that time too much was going on - I was going thru a divorce, bankrupcty, foreclosure, etc. The cancer treatment path was set - reading and worrying was just making things worse.
But, now things are different. They are better, and it's time for me to look again and seek and offer support to those in similar places. One of the things the Mayo docs told me was that people react to the name Hurthle Cell - but they see a big number of these cases. They said, fwiw, that each case is really different - and we have to see it that way.
I'm hopeful for me, and for all of you. We're breathing today, and that is good. Keep fighting and take care of yourselves.
molly0 -
Mollyd350mollyd350 said:New ....
Hi,
I just wanted to introduce myself. I was dx'ed in Sept. of '09 with HCC after removing 1/2 my thyroid - I'd had nodules for years since my 20's and I'm now 50. (I've also had four negative biopsies in the past ten years). The removal was because it seemed to be growing, and my endo wanted it out. Unfortunately, they found a 6cm hcc - though it doesn't seem to have spread. They apparently had difficulty diagnosing it, so by the time they found out, I was too far out of the intial surgery to go back in and have the TT.
I transferred to Mayo, because I live in MN and I could - seemed like a good idea. Surprisingly Mayo docs didn't seem too urgent about me. Their take is mine seems to be slow growing. Seriously, I have no idea how they come to that conclusion and think it's bunk, but anyway...
I suppose I worry about what everyone does. Just because there isn't evidence of spread, the realtiy is we are dealing with microscopic cells. It's spread, or it hasn't - I'm glad there's no evidence, but I guess only time really will tell. And, it is weird to get different takes on this cancer from my docs. My regular endo was aggressive and uber serious about treatment regimines. She concurred I should go to Mayo - and they were kind of calm about the whole thing - really believing surgery was curative for me. However - they seemed a little more alarmed about the tiny papillary spot, whereas my regular endo basically said pretty much everyone has these tiny spots ....
Anyway, I'm of the mind better safe than sorry - so my approach is to be vigilent, self advocating, and pretty aggressive.
And, I realize that medical professionals aren't gods. I literally watched as they did the FNA's, knowing they got the tissue ... and still after four times, they did not find the HC. Scary really.
I had the rest of my thyroid removed in January. They found a tiny spot of papillary cancer in the other lobe - again they weren't concerned at all. My ct scans of head and lungs were clear - ultrasound too.
I had the radioactive iodine in March after the low iodine diet, and much like others have written here - it was fine. Isolation, changing food, etc., but in the big scheme of things no big deal.
I just had labs done a couple of weeks ago. I'm a little confused about the numbers they look at - my Thyroglobulin is 0.1, which seems to be good. My TSH is 1.14 - and my levothyroxine was upped to 150 as I think they want that number at 1 or below .... but I really am not sure.
I have an ultrasound in August. To be honest, I'm scared. At the time of the initial dx - my friends banned me from the internet (and I complied after one horrible night). At that time too much was going on - I was going thru a divorce, bankrupcty, foreclosure, etc. The cancer treatment path was set - reading and worrying was just making things worse.
But, now things are different. They are better, and it's time for me to look again and seek and offer support to those in similar places. One of the things the Mayo docs told me was that people react to the name Hurthle Cell - but they see a big number of these cases. They said, fwiw, that each case is really different - and we have to see it that way.
I'm hopeful for me, and for all of you. We're breathing today, and that is good. Keep fighting and take care of yourselves.
molly
Hi Molly,
This all sounds very positive. I am most impressed with the vigorous way you are acting as your own advocate!
You should have your TSH suppressed after R131 for about 1 year. It shoudl remain at 0.0??? because the year marker is usually Thyrogen shots, not R131, if all stays clear. I was on 175 mcg for a year. The last three motnhs before the Thyrogen were a stretch as
I was so hyperthyroid. I kept thinking I am going to have a thyroid storm. My friend died as a result of a thyroid storm.
The thyroglobulin is super, as that indicates no presence of carcinoma in your blood.
I have found that the doctors are less alarmists than we...it is our disease, not theirs.
I would also hope you are going to get full neck ultrasounds at least every 6 months. This really helps you stay on top of things. I also go bet my blood work done every 3 months, with or without a doctors requisition.
All the best,
Elaine0 -
Scanssamanjan said:Mollyd350
Hi Molly,
This all sounds very positive. I am most impressed with the vigorous way you are acting as your own advocate!
You should have your TSH suppressed after R131 for about 1 year. It shoudl remain at 0.0??? because the year marker is usually Thyrogen shots, not R131, if all stays clear. I was on 175 mcg for a year. The last three motnhs before the Thyrogen were a stretch as
I was so hyperthyroid. I kept thinking I am going to have a thyroid storm. My friend died as a result of a thyroid storm.
The thyroglobulin is super, as that indicates no presence of carcinoma in your blood.
I have found that the doctors are less alarmists than we...it is our disease, not theirs.
I would also hope you are going to get full neck ultrasounds at least every 6 months. This really helps you stay on top of things. I also go bet my blood work done every 3 months, with or without a doctors requisition.
All the best,
Elaine
I posted details of my HCC journey earlier. After I131 last Oct. I had a whole body scan and had uptake in two places--uptake is less likely with HCC but indicated matastisis in a lymph node under my right breast bone and some in my b\thyroid bed which was most likely residual thyroid tissue. I will have another whole body scan in June and a PET scan a week later that along with the 6 monthly blood tests and sonograms are the 4 elements of regular vigilence that are the rountine for now.
As you say, strong self advocacy, vigilence, and good information and coordination between the endo, cancer surgeon, radio oncologist are all critical. My daughter who works at Johns Hopkins researched the best places for HCC and Mayo-MN and UC San Francisco are the best.
Good luck.0 -
HCCmollyd350 said:New ....
Hi,
I just wanted to introduce myself. I was dx'ed in Sept. of '09 with HCC after removing 1/2 my thyroid - I'd had nodules for years since my 20's and I'm now 50. (I've also had four negative biopsies in the past ten years). The removal was because it seemed to be growing, and my endo wanted it out. Unfortunately, they found a 6cm hcc - though it doesn't seem to have spread. They apparently had difficulty diagnosing it, so by the time they found out, I was too far out of the intial surgery to go back in and have the TT.
I transferred to Mayo, because I live in MN and I could - seemed like a good idea. Surprisingly Mayo docs didn't seem too urgent about me. Their take is mine seems to be slow growing. Seriously, I have no idea how they come to that conclusion and think it's bunk, but anyway...
I suppose I worry about what everyone does. Just because there isn't evidence of spread, the realtiy is we are dealing with microscopic cells. It's spread, or it hasn't - I'm glad there's no evidence, but I guess only time really will tell. And, it is weird to get different takes on this cancer from my docs. My regular endo was aggressive and uber serious about treatment regimines. She concurred I should go to Mayo - and they were kind of calm about the whole thing - really believing surgery was curative for me. However - they seemed a little more alarmed about the tiny papillary spot, whereas my regular endo basically said pretty much everyone has these tiny spots ....
Anyway, I'm of the mind better safe than sorry - so my approach is to be vigilent, self advocating, and pretty aggressive.
And, I realize that medical professionals aren't gods. I literally watched as they did the FNA's, knowing they got the tissue ... and still after four times, they did not find the HC. Scary really.
I had the rest of my thyroid removed in January. They found a tiny spot of papillary cancer in the other lobe - again they weren't concerned at all. My ct scans of head and lungs were clear - ultrasound too.
I had the radioactive iodine in March after the low iodine diet, and much like others have written here - it was fine. Isolation, changing food, etc., but in the big scheme of things no big deal.
I just had labs done a couple of weeks ago. I'm a little confused about the numbers they look at - my Thyroglobulin is 0.1, which seems to be good. My TSH is 1.14 - and my levothyroxine was upped to 150 as I think they want that number at 1 or below .... but I really am not sure.
I have an ultrasound in August. To be honest, I'm scared. At the time of the initial dx - my friends banned me from the internet (and I complied after one horrible night). At that time too much was going on - I was going thru a divorce, bankrupcty, foreclosure, etc. The cancer treatment path was set - reading and worrying was just making things worse.
But, now things are different. They are better, and it's time for me to look again and seek and offer support to those in similar places. One of the things the Mayo docs told me was that people react to the name Hurthle Cell - but they see a big number of these cases. They said, fwiw, that each case is really different - and we have to see it that way.
I'm hopeful for me, and for all of you. We're breathing today, and that is good. Keep fighting and take care of yourselves.
molly
Hi Molly,
I also live in MN so I was interested in what you said. My endo used to work at Mayo and now works here in the cities. She said at Mayo she did research on Hurthle cell thyroid cancer and stated there are not that many cases out there. I suppose she meant for research purposes, but she stated it is usually a slow growing cancer but very aggressive so we are going to be just as aggressive. Like everyone and everything, everyone's body reacts different to everything, including this cancer.
I agree that we need to fight and take care of ourselves.
Karleen0 -
Yetta,fishery said:question and concerned
Karleen
I have a Questiion: I had my thyroid taken out on April 20...Dr. thought I had thyroid lymphoma...what they found is no thyroid tissue left only Hurthle Cells fast growing...My Endo told me that I was lucky to have gotten the surg when I did because the cells were begining to change and become cancer...I asked if there could be any cells left that could attach them selfs else where in my body...He said that if the surg. took the whole thyroid out together then there is very little chance...I know the surg did two frozen biop. (rt & Lt) I know that the thyroid had already attached it self to my vocal cords and that it had to be cut away.(it has been almost 3 weeks sence my surg and still have hardly any voice...Surg said my vocal cords were badly brused and it could take up to 2 or 3 months before my voice will come back) then I also know from the path report that the Thyroid was taken out in 2 sections...There was no parathyroid tissue taken out....What are my odds of this turning into cancer...not knowing if there were cells left behind or part of the thyroid left behind...What should I watch out for??? Dx was severe Hashimoto's thyroiditis
RT was 4.7 x3.5x1.3
Lt was 4 x 2.5 x 1.5
any information would be great
thanks
Yetta
So the pathology came back that it wasn't cancerous? I know there are Hurthle cells in our body normally and they can change, as mine did, to cancer. My Thyroid wasn't not as big, the right was 3.5 x 3.3 x 3.1, not sure on the left. Are they still planning on doing the radio-iodine treatment or because there was no tissue left? I know Hurthle cells do not normally pick up the radioactive iodine but it is still worth doing just in case. I have mine coming up on June 9th, go on the low iodine diet May 24th and stop the thyroid meds at the same time. I would still want a follow up with a petscan and CT's or MRI to make sure there aren't any cancer cells out there. Even the blood test checking for cancer in the body such as CA 125, CBC, thyroglobin, and urine cytology. I just would not want to take a chance on it being missed and having a chance to grow elsewhere. I think a lot of woman have Hashimoto's thyroiditis without knowing it. I certainly didn't know until they found that my thyroid was enlarged and removed. I heard it is because of the low use of iodine in the diet. I know I don't use alot of added salt to my diet but also always heard there is enough in our normal diets.
As far as symptoms to watch for, there are many and they all can go with different diagnoses. Such as fatigue - more then normal, weakness, weight loss, aches, pains, blood in stool or urine. Basically anything that is different then normal, I would go in and have it checked.
Karleen0 -
KarleenSisu61 said:Yetta,
So the pathology came back that it wasn't cancerous? I know there are Hurthle cells in our body normally and they can change, as mine did, to cancer. My Thyroid wasn't not as big, the right was 3.5 x 3.3 x 3.1, not sure on the left. Are they still planning on doing the radio-iodine treatment or because there was no tissue left? I know Hurthle cells do not normally pick up the radioactive iodine but it is still worth doing just in case. I have mine coming up on June 9th, go on the low iodine diet May 24th and stop the thyroid meds at the same time. I would still want a follow up with a petscan and CT's or MRI to make sure there aren't any cancer cells out there. Even the blood test checking for cancer in the body such as CA 125, CBC, thyroglobin, and urine cytology. I just would not want to take a chance on it being missed and having a chance to grow elsewhere. I think a lot of woman have Hashimoto's thyroiditis without knowing it. I certainly didn't know until they found that my thyroid was enlarged and removed. I heard it is because of the low use of iodine in the diet. I know I don't use alot of added salt to my diet but also always heard there is enough in our normal diets.
As far as symptoms to watch for, there are many and they all can go with different diagnoses. Such as fatigue - more then normal, weakness, weight loss, aches, pains, blood in stool or urine. Basically anything that is different then normal, I would go in and have it checked.
Karleen
I have an appt. with the Endo. on June 3td for blood test and just a check up I guess??? Then back to the Surgen on the 9th. for a recheck....How long did it take for all the swelling to go away after you had your thyroid taken out? I am still pretty swollen and still very little voice...I will request the thyroglobin blood test, I know that the CBC, Metabolic, T4 and TSH levels have been ordered...I am begining to become Hypo. My hair is falling out and I am very tired. I was hyper. before...I just want to feel good and have my voice back....I am very worried about the what if's...In Oct. my thyroid was normal by Feb it had changed that much...So the swelling or lump that I have worries me....I don't know...It is shaped like the letter L and is on my right side of the neck...I had my thyroid taken out on April 20th, three weeks ago. I don't know if it because I am worried that I am making to much of this or if it is something that needs to be looked at...I don't know what is normal....Thank you for your input and best of luck to you
Yetta0 -
Hi KarleenSisu61 said:Hurthle Cell CA
I haven't written for awhile. Was diagnosed on February 23rd and they had to wait 2 months before taking the right side out which was 3 weeks ago. The right side came back non-cancerous, just the left side. I am on Cytomel now until May 24th when I go off and will also go on the low-iodine diet. I am nervous about that. I had to have my thyroid med adjusted as I wasn't feeling right and they TSH came back at 12.5, instead of 0.018 where it was before the 2nd surgery. I know we are all going through some rough times. I have an intermittent leave through work so when I don't feel right I can call in. I worked one night last week where my brain felt really muddy, which isn't good for an ICU nurse. I have my ablation on June 9th along with the scan. I can't wait to see if it is anywhere else. I am hoping that since it wasn't in the right side that it hadn't gotten anywhere else. The left side was large and I also did have Hashimoto's thyroiditis which was found at the same time.
9 days is alot for isolation. I was told only a week and to make sure you flush 3x after using the toilet.
Lois, I hope things start getting better for you.
Karleen
I got my new surgery date today of June 11. I can't believe this has been going on this long. I am feeling better now since the illness that posponed my April TT surgery. Nice to see you here again and thanks for asking about me! Wow, 2 surgeries! I hope you okay through the LID and RAI. I have hasimotos also. Lois0 -
Thanks for info. Elainesamanjan said:danjo2, loispol, and weberdens
Dear Danjo,
I am truly sorry to hear this story, however, I would guarantee if you post his original pathology afer surgery he already had lymph involvement. While it is true that this type cancer does not uptake RAI131 very well, it is the only option. For me, it was to make certain that all thyroid cells were ablated.
So far, I have had a positive outcome and have blood tested every three months, full neck
ultrasound every 6 months. All treatment is done at Johns Hopkins, not where I live in south Florida.
I was diagnosed in early 2009 so about 18 months ago.
Please let me know his original TNM if you have it.
God bless and I shall keep you in my thoughts.
Also, I bought two medical textbooks and found studies done by two of my three doctors. I did a lot of research. This year I had Thyrogen and he did not order any scans except ultrasound. This is all due to TNM at initial diagnosis.
Elaine
P.S. Lois and Weberdens
I was not isolated except at night. I could spend short times around everyone except small children without direct contact. I was a guest at my sister's home since I don't live in Baltimore. For one week my husband and I could not share the same bed. I also avoided food preparation for the 2 weeks(nails looked beautiful)
Don't let this be more than it needs to be.
You should forever be concerned about further dental x-rays and the like. Ask for a pat down at airports, not the new scanners, which emit radiation. This is a radiosentive cancer.
Good to be back in touch after a short getaway!!
Elaine
I have my new surgery date of June 11th. I am anxious to get this behind me. Do you know know the current protocol concerning lymph nodes during TT for hurthle cell neoplasm? I Hope you are well. Smiles, Lois0 -
Glad you have a surgery date!loispol1 said:Hi Karleen
I got my new surgery date today of June 11. I can't believe this has been going on this long. I am feeling better now since the illness that posponed my April TT surgery. Nice to see you here again and thanks for asking about me! Wow, 2 surgeries! I hope you okay through the LID and RAI. I have hasimotos also. Lois
Will keep you in my prayers. I'm back to work....less than 1 week after RAI, so I haven't been able to post as much! Spending time with the family when not working but thinking of you all!0
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