Hurthle Cell Carcinoma
Comments
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Celebrate!!loispol1 said:Thank you! My path report, scar ....
I received my final pathology results yesterday. The surgeon had not read them but gave them to me during post-op. Basically they found a 0.7 cm hurthle cell adenoma,a 1 cm nodule of the isthmus with adenomatous hyperplagia, and nodular hyperplagia in the rt and lt lobes, with multiple nodules within the right and left lobes largest measuring up to 1 cm.
I have requested a seond opinion patholgy with MD Anderson in Texas, specifically a Dr. luna who specializes in hard to determine pathologies such as hurthle cell. My surgeon is going to try to arrange it. I want to be certain this patholgy was read correctly.
The report was rather short and I was wondering should all of these nodules have been examined and reported on more closely? I do not know about these things.
So it appears this is good news but I am not ready to celebrate yet as I have heard that others have been found to have HCC on second opinion final patholgy. I have a lot of my energy back and have been up most of the day. Yesterday I had to drive to Orlando for my post-op and cardiolosit visits, it was hard. I also saw my internist today. He is concerned about my low calcium levels and ordered another ionized CA test. The scar on my neck is really starting to bother me. They took off the steristrips yesterday and it feels like it is being pulled in. It has a lot of swelling/fluid inside. The ends of the scar are looking rounded and hard. I have dissolvable stitches, is this normal? Also, my ears are really hurting inside (ear drums) and my throat sore again(had stopped hurting) and my voice is a lot weaker? Had TT last Friday, one week ago, is this normal? My whole neck hurts a lot everywhere. I have not taken any pain medicine since Sunday evening in the hospital. Any suggestions for the scar or what I can do to ease the pain. Is is too soon for warm compresses? Lois
Celebrate and enjoy the good diagnosis. Warm compresses will help ease the pain of the scar. I'll e-mail you privately later as I am heading to my parents house for a picnic!0 -
Hi therebklyn718 said:new
Hello everyone -
My mom was just diagnosed with Hurthle cell cancer and I cannot express how helpful, comforting and educational it has been for me to have found this group - It seems like months have past since I started reading the posts but in fact it has just been less than 48 hrs.
Everyone told me that a thyroiddectomy is a common and safe procedure. TONS of people have had it - mothers of friends, friends of friends --- It has been 4 days since the surgury and mom is still in hospital - battling with calcium levels that have dropped as low as 5.8. The surgeon said the operation was difficult with lots of inflamation.
AS she battles with levels, I battle with nurses who keep telling me that moms meds are on the way - pharmacy who says meds have been sent up -- different "senior resident students" every night --- makes me feel like a trouble maker...
The endo said results won't be in till next week - But he said that its hard to detect if the cells of hurtle cancer are malignant or beign - so he recomended radioiodine and then he made it almost seem like the best thing to do is to wait --- which I will not do.
AND so does anyone know of any treatment centers in nyc - I guess Cornell and Presbyterian hospitals????
THANkS everyone for sharing - it has truelly helped me a great deal to read your stories - I will keep everyone in my prayers as i kick some Hurthle cell cancer ****.
As you can see I have been having the same situation. How is your mom doing today? She is so lucky to have you for excellent support! I am a little confused, did you mean to say she had a hurthle cell neoplasm (FNA biopsy result) and the final pathology result won't be back for a week? Those of us with the hurthle cell FNA (mine was termed a neoplasm) go into the surgery not knowing what exactly will be found. It is so hard to not know what you are dealing with! Since I had so many nodules on both sides, hasimotos and a goiter I decided to do the TT, as opposed to having only one side removed. I just found out that my pathology result was a hurthle cell adenoma (benign) tumor, as opposed to a hurthle cell cancer. I am still wanting a second expert pathology opinion, as hurthle cell carcinoma is hard to identify. My pahtology slides are being sent to MD Anderson TX facility. Hopefully after I received those pathology results, I will trust I am out of the woods and not needing cancer treatment. The waiting is so hard. If your mom is found to have an adenoma or benign finding, they would not be doing RAI. All of this terminology is very hard to gasp onto. I will be thinking of you and sayiing a prayer for your mom! I hope she is doing very well today and not in much pain. Smiles,
Lois0 -
Thanks!weberdns said:Celebrate!!
Celebrate and enjoy the good diagnosis. Warm compresses will help ease the pain of the scar. I'll e-mail you privately later as I am heading to my parents house for a picnic!
I think I am ready to celebrate? I'm still a little worried it might have been missed. Oh heck, I may as well be happy while I can! Have fun at your picninc! Thanks!0 -
Lois that's great news!!!loispol1 said:Thanks!
I think I am ready to celebrate? I'm still a little worried it might have been missed. Oh heck, I may as well be happy while I can! Have fun at your picninc! Thanks!
Lois that's great news!!! Even though I am a new bee, I think that you should definitely celebrate! You deserve a celebration…
My mom got home on Saturday and she is doing better. Thanks for the prayer.
She's had a history with thyroid disease and has been taking sintroid ever since I can remember - We are from Poland - and she was in Eastern Europe during Chernobyl. Her last biopsy (8 months ago) detected inflammation and growth of nodules on both sides and I guess hurthle cell neoplasm- as the doctor’s said that these cells are unpredictable – and can become cancerous. SO she had a total thyroidectomy. The surgeon said that he’s never seen such an inflamed thyroid before and he along with the endo are stressing Hurthle cell cancer however won’t know anything for sure until the slides come back.
So I guess we are waiting for the pathology result.
After reading about Hurthle cell I can understand why you would be hesitant in celebrating as these cells can be sneaky – but Its great news that your results came back as hurthle cell ademoma and I am hoping for similar results – so CHEERS!
I hope everyone can take the time out today to enjoy the first day of SUMMER!
Marta0 -
Hi Marta!bklyn718 said:Lois that's great news!!!
Lois that's great news!!! Even though I am a new bee, I think that you should definitely celebrate! You deserve a celebration…
My mom got home on Saturday and she is doing better. Thanks for the prayer.
She's had a history with thyroid disease and has been taking sintroid ever since I can remember - We are from Poland - and she was in Eastern Europe during Chernobyl. Her last biopsy (8 months ago) detected inflammation and growth of nodules on both sides and I guess hurthle cell neoplasm- as the doctor’s said that these cells are unpredictable – and can become cancerous. SO she had a total thyroidectomy. The surgeon said that he’s never seen such an inflamed thyroid before and he along with the endo are stressing Hurthle cell cancer however won’t know anything for sure until the slides come back.
So I guess we are waiting for the pathology result.
After reading about Hurthle cell I can understand why you would be hesitant in celebrating as these cells can be sneaky – but Its great news that your results came back as hurthle cell ademoma and I am hoping for similar results – so CHEERS!
I hope everyone can take the time out today to enjoy the first day of SUMMER!
Marta
It is hard having surgery not knowing in advance if a person has cancer or not. I am hesitant but grateful for now. Thank you for your happiness at my result. Have you heard anything yet and how is your mom doing? I really hope your mom has a benign result like me! I have been having calcium issues but hopefully they are resolving. My incision is healing very well. I just started using a silicone scar patch and in only two days part of the scar is invisible...hard to believe only 2 weeks after surgery. I am also drinking 2x's daily an Emergen-C pk (vitamin C + some mineral, vitamins). Also I have been eating a lot of fresh pineapple, which is suppose to be good for healing. Sure helps with relieving constipation after surgery.
I know I should be so very grateful, and I am, but I have been feeling kind of down after the long drawn out stress of waiting for a final result (6 months wait total since the new nodule showed up). I still worry a cancer was missed and I am not sure my surgeon has requested the second opinion I asked for. I do have a follow-up in a couple of weeks. I am also not sure if my thyroid replacement is the right level or it is just the low calcium symptoms. I have/had hasimotos. The final path found a lot of nodules throughout my goiter but only one hurthle adenoma. I do feel better now after surgery, but also I wonder things like will my thyroid tissue grow back or will the hasimotos come back? Could the adenoma have turned into a cancer in the future? Was it really necessary for me to have had this operation? I felt so very bad prior to it. I really thought something was wrong with me, that I had cancer. Guess I am just going through post surgery blues, kind of like a post-partum or grievng of my lost organ!
Thank you again for writing me and I sure hope your mom is doing very well. You are a very sweet daughter to be posting here for her! Please keep us up-dated as to your mom's healing process and final pathology! I'm sorry for my "going on" here about myself, the focus should be on your mom's situation right now! Smiles, Lois0 -
Facing my 4th "throat slit"loispol1 said:Hi Marta!
It is hard having surgery not knowing in advance if a person has cancer or not. I am hesitant but grateful for now. Thank you for your happiness at my result. Have you heard anything yet and how is your mom doing? I really hope your mom has a benign result like me! I have been having calcium issues but hopefully they are resolving. My incision is healing very well. I just started using a silicone scar patch and in only two days part of the scar is invisible...hard to believe only 2 weeks after surgery. I am also drinking 2x's daily an Emergen-C pk (vitamin C + some mineral, vitamins). Also I have been eating a lot of fresh pineapple, which is suppose to be good for healing. Sure helps with relieving constipation after surgery.
I know I should be so very grateful, and I am, but I have been feeling kind of down after the long drawn out stress of waiting for a final result (6 months wait total since the new nodule showed up). I still worry a cancer was missed and I am not sure my surgeon has requested the second opinion I asked for. I do have a follow-up in a couple of weeks. I am also not sure if my thyroid replacement is the right level or it is just the low calcium symptoms. I have/had hasimotos. The final path found a lot of nodules throughout my goiter but only one hurthle adenoma. I do feel better now after surgery, but also I wonder things like will my thyroid tissue grow back or will the hasimotos come back? Could the adenoma have turned into a cancer in the future? Was it really necessary for me to have had this operation? I felt so very bad prior to it. I really thought something was wrong with me, that I had cancer. Guess I am just going through post surgery blues, kind of like a post-partum or grievng of my lost organ!
Thank you again for writing me and I sure hope your mom is doing very well. You are a very sweet daughter to be posting here for her! Please keep us up-dated as to your mom's healing process and final pathology! I'm sorry for my "going on" here about myself, the focus should be on your mom's situation right now! Smiles, Lois
First of thanks to everyone for sharing their experiences. It really helps to know others are in this battle and are winning.
I got the results of my PET/CT scan and there is another tumor in my neck. It is 4.3 cm X 4.2 cm and goes below my collar bone. I see a head & neck surgeon on July 1st to schedule a neck disection. This will be my 4th neck surgery. My oncologist got a more precise pathology on the recent (May 8th) excision and the margins were positive (dirty) so it is most likely that this new mass is HCC also. The RAI treatment has been postponed and I will most likely have radiation treatments as well. The good news is that there was no other indication of cancer at any other sites on the PET/CT scan. Has anyone had a neck disection for recurrant HCC? I am wondering what to expect. I know the surgeon will explain things, but I'd like to hear personal experiences. I'm doing my best to stay positive, but must admit I dread the next couple of months.
Lois, I am so happy for your good news. By all means celebrate!0 -
I've never heard of doing RAI for benign tumorbklyn718 said:new
Hello everyone -
My mom was just diagnosed with Hurthle cell cancer and I cannot express how helpful, comforting and educational it has been for me to have found this group - It seems like months have past since I started reading the posts but in fact it has just been less than 48 hrs.
Everyone told me that a thyroiddectomy is a common and safe procedure. TONS of people have had it - mothers of friends, friends of friends --- It has been 4 days since the surgury and mom is still in hospital - battling with calcium levels that have dropped as low as 5.8. The surgeon said the operation was difficult with lots of inflamation.
AS she battles with levels, I battle with nurses who keep telling me that moms meds are on the way - pharmacy who says meds have been sent up -- different "senior resident students" every night --- makes me feel like a trouble maker...
The endo said results won't be in till next week - But he said that its hard to detect if the cells of hurtle cancer are malignant or beign - so he recomended radioiodine and then he made it almost seem like the best thing to do is to wait --- which I will not do.
AND so does anyone know of any treatment centers in nyc - I guess Cornell and Presbyterian hospitals????
THANkS everyone for sharing - it has truelly helped me a great deal to read your stories - I will keep everyone in my prayers as i kick some Hurthle cell cancer ****.
I would definitely get a second opinion on this as RAI isn't done for benign tumors and the pathologist should be able to tell if it is malignant or benign after a disection of the thyroid after it's removal. If there are questions you can ask for a second opinion for a pathologist to read your tissue samples.0 -
Oh MyAliceP said:Facing my 4th "throat slit"
First of thanks to everyone for sharing their experiences. It really helps to know others are in this battle and are winning.
I got the results of my PET/CT scan and there is another tumor in my neck. It is 4.3 cm X 4.2 cm and goes below my collar bone. I see a head & neck surgeon on July 1st to schedule a neck disection. This will be my 4th neck surgery. My oncologist got a more precise pathology on the recent (May 8th) excision and the margins were positive (dirty) so it is most likely that this new mass is HCC also. The RAI treatment has been postponed and I will most likely have radiation treatments as well. The good news is that there was no other indication of cancer at any other sites on the PET/CT scan. Has anyone had a neck disection for recurrant HCC? I am wondering what to expect. I know the surgeon will explain things, but I'd like to hear personal experiences. I'm doing my best to stay positive, but must admit I dread the next couple of months.
Lois, I am so happy for your good news. By all means celebrate!
I am so sorry you are having to have another neck surgery. Your spirits seem to be very optimistic and that is a very good thing. Sounds like you doctors are keeping close tabs on you.
Thank you for your sweet note. A second opinion pathology is currently being done at MD Anderson in Texas on my final pathology slides. I will feel very much relieved if that report is good also. Smiles and you will be in my prayers for everything to go well with your surgery. Lois0 -
Hi Marta, Any news yet?bklyn718 said:Lois that's great news!!!
Lois that's great news!!! Even though I am a new bee, I think that you should definitely celebrate! You deserve a celebration…
My mom got home on Saturday and she is doing better. Thanks for the prayer.
She's had a history with thyroid disease and has been taking sintroid ever since I can remember - We are from Poland - and she was in Eastern Europe during Chernobyl. Her last biopsy (8 months ago) detected inflammation and growth of nodules on both sides and I guess hurthle cell neoplasm- as the doctor’s said that these cells are unpredictable – and can become cancerous. SO she had a total thyroidectomy. The surgeon said that he’s never seen such an inflamed thyroid before and he along with the endo are stressing Hurthle cell cancer however won’t know anything for sure until the slides come back.
So I guess we are waiting for the pathology result.
After reading about Hurthle cell I can understand why you would be hesitant in celebrating as these cells can be sneaky – but Its great news that your results came back as hurthle cell ademoma and I am hoping for similar results – so CHEERS!
I hope everyone can take the time out today to enjoy the first day of SUMMER!
Marta
Just thought I would check and see how your mom is doing and if she received the final pathology results. Really hope all is going well for you both, Lois0 -
Hoping for surgery soonloispol1 said:Hi Marta, Any news yet?
Just thought I would check and see how your mom is doing and if she received the final pathology results. Really hope all is going well for you both, Lois
I met with the head and neck surgeon and he says I need a bilateral neck dissection. I have a metastic HCC on the left side of my neck which may involve a major blood vessel. I will have another CT scan to determine the location of the tumor relative to the artery. I also had an HCC mass on the right side which was removed in May. Hence the need for the bilateral surgery. I'd love to hear from someone who has undergone this surgery. I was hoping it would be done soon, but the doctor will be on vacation so the earliest I can have it is July 23rd.0 -
Updatebklyn718 said:Lois that's great news!!!
Lois that's great news!!! Even though I am a new bee, I think that you should definitely celebrate! You deserve a celebration…
My mom got home on Saturday and she is doing better. Thanks for the prayer.
She's had a history with thyroid disease and has been taking sintroid ever since I can remember - We are from Poland - and she was in Eastern Europe during Chernobyl. Her last biopsy (8 months ago) detected inflammation and growth of nodules on both sides and I guess hurthle cell neoplasm- as the doctor’s said that these cells are unpredictable – and can become cancerous. SO she had a total thyroidectomy. The surgeon said that he’s never seen such an inflamed thyroid before and he along with the endo are stressing Hurthle cell cancer however won’t know anything for sure until the slides come back.
So I guess we are waiting for the pathology result.
After reading about Hurthle cell I can understand why you would be hesitant in celebrating as these cells can be sneaky – but Its great news that your results came back as hurthle cell ademoma and I am hoping for similar results – so CHEERS!
I hope everyone can take the time out today to enjoy the first day of SUMMER!
Marta
Hi Marta,
I'm new to this site and was wondering how your mom was doing. I had a TT on June 18th and was also diagnosed with Hurthle Cell Cancer. It was minimally invasive, but I have just had the slides sent to Sloan for a second opinion.
I know you were wondering about treatment centers...look into Sloan-Kettering. They had done a study on HCC.
Good Luck to your mom0 -
Hurthle Cell Journey
My 18 year old daughter is preparing this summer (after she apears in Cabaret locally)for surgery to remove her thyroid after a partial removal that diagnosed Hurthle Cell Carcinoma from Sloan-Kettering. Our new venue will be UCSF as we live in Northern Calif. I trust this is a cutting edge center for HCC. Posters here would help us all to preface with their medical center. I am getting advice to find the place with the most up-to-date research regionally. We just had some "precision ultra sound" to determine the extent and location of lymph contamination from the Hurthle cells. I am not encouraged by hours of research on the profile of this particular disease. Treatment is neither definitive nor effective long-term because it is such a small sample of thyroid carcinoma. Even best-case as I have read above, shows that discomfort and life-style disruption is inevitable with no predictable outcomes. That is lousy for an 18 year old who has been planning a musical theatre degree of study in NYC this fall. She has to put it off a year to rehabilitate her voice. Who knows how she will proceed after a year. But my circle of people who care are urging me to keep the faith. So I'm sorry to vent, I really do value the audience's collective wisdom, and I know the future has its own way... Thanks for being there. The Mom.0 -
Just had to post a note to youbiskie said:Hurthle Cell Journey
My 18 year old daughter is preparing this summer (after she apears in Cabaret locally)for surgery to remove her thyroid after a partial removal that diagnosed Hurthle Cell Carcinoma from Sloan-Kettering. Our new venue will be UCSF as we live in Northern Calif. I trust this is a cutting edge center for HCC. Posters here would help us all to preface with their medical center. I am getting advice to find the place with the most up-to-date research regionally. We just had some "precision ultra sound" to determine the extent and location of lymph contamination from the Hurthle cells. I am not encouraged by hours of research on the profile of this particular disease. Treatment is neither definitive nor effective long-term because it is such a small sample of thyroid carcinoma. Even best-case as I have read above, shows that discomfort and life-style disruption is inevitable with no predictable outcomes. That is lousy for an 18 year old who has been planning a musical theatre degree of study in NYC this fall. She has to put it off a year to rehabilitate her voice. Who knows how she will proceed after a year. But my circle of people who care are urging me to keep the faith. So I'm sorry to vent, I really do value the audience's collective wisdom, and I know the future has its own way... Thanks for being there. The Mom.
I was diagnosed with HCC at 49 years old, and can't imagine doing it at 18. Your daughter needs your strength, your support, your positive outlook, and your faith. I was diagnosed at a relatively early stage in March and had RAI in April. I too have read the prognosis and treatment options available, and was discouraged. I had one endo who was very positive with me, and my PCP who found it totally by accident is also encouraging me. I also was assigned a One-on -One from the Thyroid Cancer Survivors Group and she has been living 8 years with HCC and has had no recurrence. Realize that on the websites and support group most people are there because of active disease. Survivors usually stray away from groups after being symptom free to just try to live their lives. Keep the faith for your daughter.....faith that after something so horrible has happened to her, but will result in something else wonderful in her future! I don't know what this is, but I'm sure that with your love and support it will be amazing! Hugs.....thanks for being such a good mom to your daughter! She needs you now more than ever.0 -
Did you get your 2nd opinion report back?hopeful4all said:Update
Hi Marta,
I'm new to this site and was wondering how your mom was doing. I had a TT on June 18th and was also diagnosed with Hurthle Cell Cancer. It was minimally invasive, but I have just had the slides sent to Sloan for a second opinion.
I know you were wondering about treatment centers...look into Sloan-Kettering. They had done a study on HCC.
Good Luck to your mom
I just got my second opinion report back. I called myself and requested they fax it to me. I had a TT on June 11 for hurthle cell neoplasm and over eight other nodules ultrasound positive throughout the thyroid. My DX was hurthle cell adenoma. I have read it is hard to dx a hurthle adenoma from a hurtle cancer. I requested a second opinion pathology with MDA in TX, specifically with a hurthle cell expert. It was reviewed by a thyroid head & neck pathologist and it is stated I had "multinodular adenomatous goiter with hurthle cell changes" in rt and lt lobes, no mention of "the hurthle adenoma" as in first patholgy report which also reported nodular hyperplasia in the right, left and isthmus. Recently I received correspondence from a thyroid cancer doctor/expert at one of the other thyroid cancer support areas. He suggested my pathology slides and possibly the "block" be sent and reviewed by one of three top hurthle/thyroid expert pathologists. I feel like I am never going to come to an end to this! So I have just placed a couple of calls to see about yet a third opinion. Apparently adenomas are frequently misread even by large name cancer facilities? And there exists an on-going debate as to what determines exactly a malignancy, an adenoma from a cancer. I do not want to find out later on a hurthle cancer was missed and then I have a huge problem because I received no treatment. My situation is different. It seems once cancer is dx’d a second opinion would provide additional helpful information for treatment guidelines. I'm just ranting here I suppose. I do not feel confident at all, with all of the research I was basically forced to do on my own, that this hurthle cell adenoma DX or whatever, is 100% accurate. My pathology reports are extremely brief. My FNA was hurthle cell neoplasm by two different pathology institutions. Perhaps after receiving a hurthle expert patholgy review I can finally put this issue to rest. Please let us know about the quality of your second opinion from sloan kettering! I am very interested! Lois0 -
TNM - Biskiebiskie said:Hurthle Cell Journey
My 18 year old daughter is preparing this summer (after she apears in Cabaret locally)for surgery to remove her thyroid after a partial removal that diagnosed Hurthle Cell Carcinoma from Sloan-Kettering. Our new venue will be UCSF as we live in Northern Calif. I trust this is a cutting edge center for HCC. Posters here would help us all to preface with their medical center. I am getting advice to find the place with the most up-to-date research regionally. We just had some "precision ultra sound" to determine the extent and location of lymph contamination from the Hurthle cells. I am not encouraged by hours of research on the profile of this particular disease. Treatment is neither definitive nor effective long-term because it is such a small sample of thyroid carcinoma. Even best-case as I have read above, shows that discomfort and life-style disruption is inevitable with no predictable outcomes. That is lousy for an 18 year old who has been planning a musical theatre degree of study in NYC this fall. She has to put it off a year to rehabilitate her voice. Who knows how she will proceed after a year. But my circle of people who care are urging me to keep the faith. So I'm sorry to vent, I really do value the audience's collective wisdom, and I know the future has its own way... Thanks for being there. The Mom.
Dear Biskie,
Can you please ask for the TNM stage of your daughter's pathology/prognosis? I would imagine, and hope, that her age is a real positive factor here. Also, the size of the tumor, whether it was found in lymph nodes, and whether there was distant metastatic disease. This all plays a part in her prognosis.
Please keep me posted.
Thanks,
Elaine0 -
Radiation -AlicePAliceP said:Hoping for surgery soon
I met with the head and neck surgeon and he says I need a bilateral neck dissection. I have a metastic HCC on the left side of my neck which may involve a major blood vessel. I will have another CT scan to determine the location of the tumor relative to the artery. I also had an HCC mass on the right side which was removed in May. Hence the need for the bilateral surgery. I'd love to hear from someone who has undergone this surgery. I was hoping it would be done soon, but the doctor will be on vacation so the earliest I can have it is July 23rd.
Dear AliceP,
My concern with all the testing and radiation is that this is a radiosensitive cancer, HCC. Time is of the essence, so hang in there. The 23rd is right around the corner. I am so sorry to hear that this is the fourth surgery. What was your original TNM? Perhaps you were never told. Do you know the tumor size at the time of presentation? Was it in your lymph nodes? How about any distant metastatic disease at the time of your original surgery. If you can find any of this out, you would be more informed about the present prognosis.
I am stage III, but the TNM was T3N0M0 which was very good news. I am followed with blood each 2-3 months, full neck ultrasound each 6 months and travel to Johns Hopkins for endocrinologist and treatment,if necessary, every 6 months. I live in south Florida.
So far only the RAI was needed in the initial phase of the diagnosis of HCC. I had the rhtsh-(Thyrogen) in March, which, while very expensive, showed no recurrence.
Good luck next week.
I am leaving for about 10 days and will have no access to this site. I shall keep you in my thoughts and prayers though and check on you when I return.
Elaine0 -
TNMsamanjan said:TNM - Biskie
Dear Biskie,
Can you please ask for the TNM stage of your daughter's pathology/prognosis? I would imagine, and hope, that her age is a real positive factor here. Also, the size of the tumor, whether it was found in lymph nodes, and whether there was distant metastatic disease. This all plays a part in her prognosis.
Please keep me posted.
Thanks,
Elaine
Thank you for your interest, Elaine. I hadn't noticed the TNM stage on the report. It is not easy to distinguish the meanings of the line that contains those initials. It says, "AJCC p TNM Staging (7th Ed. (based on available surgical material from this case): pT1b pNX pMX." We do not have results of the lymph ultra scan yet. But there is vascular and capsular invasion. There is no mention of metastatic disease. The tumor is 1.6cm greatest dimension.
You are all my new BFFs!0 -
weberdns' wisdomweberdns said:Just had to post a note to you
I was diagnosed with HCC at 49 years old, and can't imagine doing it at 18. Your daughter needs your strength, your support, your positive outlook, and your faith. I was diagnosed at a relatively early stage in March and had RAI in April. I too have read the prognosis and treatment options available, and was discouraged. I had one endo who was very positive with me, and my PCP who found it totally by accident is also encouraging me. I also was assigned a One-on -One from the Thyroid Cancer Survivors Group and she has been living 8 years with HCC and has had no recurrence. Realize that on the websites and support group most people are there because of active disease. Survivors usually stray away from groups after being symptom free to just try to live their lives. Keep the faith for your daughter.....faith that after something so horrible has happened to her, but will result in something else wonderful in her future! I don't know what this is, but I'm sure that with your love and support it will be amazing! Hugs.....thanks for being such a good mom to your daughter! She needs you now more than ever.
I got just the message I needed to hear from you weberdns! Bless you. I am living in two worlds right now. One - in my head about the nightmare to come in August, two - in my home with a vibrant, awesome teen who is entirely symptom free! She is rehearsing hard, singing and dancing for her part as Frenchy in Cabaret at the local CC this summer. You can bet her dear daddy and I will be giving rousing ovations at as many of the 18 shows we can attend!
Thank you so much for your help.0 -
Any advice?
My mom was just diagnosed yesterday with HCC. She is getting the other half of her thyroid removed next week. I have read so many posts and I'm wanting to know what is the best advice I can get from you experienced people. I am pretty much a mess over this, due to the fact I lost my husband to cancer 6 years ago. He had colon and bladder cancer, but it was a horrible battle that we lost. My son is only 13, and he has only seen death as a result from cancer, so I'm here, and willing!0 -
UCSF and Hurthle Cell Carcinomabiskie said:Hurthle Cell Journey
My 18 year old daughter is preparing this summer (after she apears in Cabaret locally)for surgery to remove her thyroid after a partial removal that diagnosed Hurthle Cell Carcinoma from Sloan-Kettering. Our new venue will be UCSF as we live in Northern Calif. I trust this is a cutting edge center for HCC. Posters here would help us all to preface with their medical center. I am getting advice to find the place with the most up-to-date research regionally. We just had some "precision ultra sound" to determine the extent and location of lymph contamination from the Hurthle cells. I am not encouraged by hours of research on the profile of this particular disease. Treatment is neither definitive nor effective long-term because it is such a small sample of thyroid carcinoma. Even best-case as I have read above, shows that discomfort and life-style disruption is inevitable with no predictable outcomes. That is lousy for an 18 year old who has been planning a musical theatre degree of study in NYC this fall. She has to put it off a year to rehabilitate her voice. Who knows how she will proceed after a year. But my circle of people who care are urging me to keep the faith. So I'm sorry to vent, I really do value the audience's collective wisdom, and I know the future has its own way... Thanks for being there. The Mom.
I was diagnosed with HCC May 2009. I was able to be referred to the Head and Neck Cancer Center at UCSF by my primary care physician(I life in San Francisco). Dr. Lisa Orloff is one of the top head and neck cancer surgeons in the country--and UCSF was identified by my daughter who works at Johns Hopkins as one of two top centers for HCC in the country(the other is Mayo in MN). Dr. Orloff performed a second completion thyroidectomy on me in Aug 2009, I had radioactive iodine therapy in Oct 2009--continued with blood tests and sonograms for the past year and recently had a PET scan and a radioactive iodine scan. The treatment at UCSF is top notch and Dr. Orloff is straightforward and direct in telling you what the situation is, what you need to do, and the likelihood of various outcomes. You will most likely have a team of doctors who follow your case--an endocrinologist, a cancer surgeon, and a nuclear medicine specialist. My endocrinologist is not a part of UCSF(she trained there however) and transferring medical tests and other information between medical complexes can be bothersome--you have to be the advocate and follow up. If possible, I would recommend having a UCSF endocrinologist as part of your team if at all possible.
If I can be of any help, please contact me at warwiz@guruswizards.com0
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