Recurrent Hurthle Cell Thyroid Cancer - my story
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.
Comments
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wow
I can't believe I shared my story and no one has even looked. I came here to share and for support. Anyone?0 -
BellsAngel69, I just readBellsAngel69 said:wow
I can't believe I shared my story and no one has even looked. I came here to share and for support. Anyone?
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 0 -
My name is Adrian,I am 37
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. 0 -
Hi Adriantonesgurl said:My name is Adrian,I am 37
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.
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.
I0 -
Wow, i learn something newBellsAngel69 said:Hi Adrian
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
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?0 -
I don't understandtonesgurl said:Wow, i learn something new
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?
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.0 -
Thyrogen InjectionBellsAngel69 said:I don't understand
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.
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.0 -
Thanks1nathaliakarina said:Thyrogen Injection
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.
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.1 -
Hey BellsAngel69,BellsAngel69 said:I don't understand
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.
I asked
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?0 -
Wow my doctor said 200mg was1nathaliakarina said:Thyrogen Injection
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.
Wow my doctor said 200mg was unusually high for patients to take and you are on 250? Did you dr say why so high?0 -
Hi, just wanted to add mytonesgurl said:Hey BellsAngel69,
I asked
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?
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
sandy0 -
Had PET and total body scantonesgurl said:Hey BellsAngel69,
I asked
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?
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.0 -
BellsAngel69,BellsAngel69 said:Had PET and total body scan
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.
I am so sorry
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,
Adrian0 -
Adriantonesgurl said:BellsAngel69,
I am so sorry
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
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?0 -
Chin up: there is hope!BellsAngel69 said:Adrian
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?
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,
Niky0 -
Hi Samsaml1992 said:my story
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
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!!!!0 -
It's definitely in my liverBellsAngel69 said:Had PET and total body scan
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.
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 **** 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!0 -
BellsAngel69BellsAngel69 said:Hi Sam
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!!!!
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.0 -
how sad:(sfl67 said:BellsAngel69
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.
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.
Wendy0
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