Is there anyone out there with Hurthle Cell thyroid cancer?
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!
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.
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.
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!!
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, Lois
sorry for everything you and your partner have been going through? How old was your partner when diagnosed?
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.
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!
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.
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
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!!
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.
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,
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.
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.
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.
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
Sorry Yetta I just have been busy and not checking this site. The swelling took about a month before I could eat again. It was worse because they had to cut through my neck muscle. My TSH is still high but coming down and I am still loosing lots of hair. It also went curly from the radio-active iodine. Alot has happened, my mom died that day after I got out of isolation from the radio-active iodine. She had non-Hodgkins lymphoma which had gone to the brain but otherwise was cleared from the body. I have been feeling tired and weak. My muscles are really weak after not doing a whole lot when I had been so hypo. I started getting some energy in mid-August. I am waiting on a pet scan on September 13th and now the ex is taking me to court to decrease his child support. Things have to get better soon! My mom's brother also was diagnosed with pancreatic cancer about the same time mom and I were both diagnosed with our cancers in December.
Hope things are better for you.
Hey, how are things going for you guys now? My mom is kind of in the same boat and I know we are running out of options. I would be grateful for any help.
First of all I am so glad to find this site. I had a TT in September 2006. the biopsy results were one mass was HCC another smaller mass was folicular cancer. The surgeon was confident he got the entire thyroid and told me there was no need to see an oncologist and that my primary care dr. could handle my follow up. I was put on levo and had a body scan 6 months later which came back fine. In 2008 I was eventually referred to an endo, whom I see every 6 months for blood tests and a thyroid ultrasound. They have all come back normal.
In February 2010 I noticed a lump on my throat. My dr. thought it was a cyst, but ordered an ultrasound. The results of it were inconclusive so I was referred to a surgeon, who removed the lump (which had enlarged during the 2 months since I found it). It came back as HCC. Now I am waiting for an appointment with an oncologist.
I am wondering what to expect next. Any insight will be appreciated.
That is the very nature of recurrent Thyroid cancer. Unfortunately, sometimes it does return.
It would be interesting to know at what stage (TNM) your original diagnosis was. Do you have that information? Also, was it in your lymph nodes when you originally presented in 2006? All this information helps predict prognosis. It isn't the final say, though.
Have blood and ultrasounds monitored more frequently too.
Best of luck!
Elaine, you will pleased to know my re-scheduled surgery is coming up and will take place on Friday June 11. I have pre-op again tomorrow. I am so very worn out from waiting for this. I still wonder what will be found. I have had two cancer scares before and both times I did not have cancer but was told it could have turned into cancer, at least with the breast situation in 2003. I guess I at least have a hurthle tumor of some sort with the FNA result I had. I started having a little trouble swallowing again and I feel some pressure there, so it is good it is happening soon. How have you been?
Alice: So sorry you are having this hurthle cell returning! I am wishing you well with your situation & saying a prayer for you!
Thinking of you as you get closer to your surgery date! Haven't been doing much here as I have been trying to live a "Normal" life after the RAI and a scan showing only neck thyroid tissue.
Since I had the most recent surgery to remove the nodule on my neck (which was HCC) I have been made very aware of how little many in the medical profession know about HCC. My surgeon referred me to a medical oncologist, who while very nice had to research HCC while I was there. I had a friend who is an RN accompany me on that visit. She asked some very pointed questions and we found that the pathology report did not address the margins. The doctor had to request that the pathologist restudy the slide. I am waiting to hear those results. At least this Dr. was honest and admitted he had never seen HCC. He did order a PET/CT scan and a bone scan. While a medical oncologist was not the right specialist for me, some progress is being made. He referred me to a radiology oncologist, whom I haven''t seen yet.
My appointment with my endo was a week later. He has ordered the thyrogen injections and RAI. I had to postpone the bone scan since it would interfer with the RAI treatment. I am now on the LID and having the PET scan today.
This is my first RAI since my original surgeon (in 2006) was so positive that he removed the entire thyroid that none was performed after that surgery. I was only followed by my PCP for the first 2 years post surgery. I have never received any copies of the pathology reports from any of my surgeries and was never told what stage my cancer was. All I heard was "we got it all and you should be fine". I now realize that I needed to be more proactive and get that information. I went from shock - you have cancer! to relief - it's all gone! I did a bit of research, but mostly put it out of my mind. Now I know I was very wrong. We have to be our own health advocates and we have a right to know the details. I hope I am on the right track now. My endo seems to know what he is doing.
I'd appreciate any advice on my up coming treatments.
I was diagnosed with HCC in March. I had RAI late April into May. Full body scan showed only activity in the neck, so we are now working to get my Synthroid levels right and will wait for 1 year for another body scan! Hugs and hope that your treatment works and is successful. You also don't mention if your tumor was encapsulated or vascular. This will have an effect on your treatment prognosis as well as your age. Hopefully all will go well and you will continue to live a long and healthy life! My only concern is if this is recurrence of HCC as treatment prognosis isn't as good the second time around. I would suggest going back to your 2006 surgeon or your PCP to see if they have a pathology report. It is also available at the hospital where you had your surgery.
Can't tell you what to expect as I have not gone through this with Hurthle cell cancer, as I have not had any recurrence. Hugs and prayers as you go through this!!
I am scheduled for a TT with possible neck dissection this Friday! I can't believe I am finally having my surgery. I really hope my surgeon gives me the TT as planned. I was a little worried at the pre-op as he seemed to be describing a partial. I interrupted saying I thought I was getting a total. I am only doing this once, I am too ill and I have over 8 nodules and they are on both sides and I am on full replacement thyroid medication now. Then I showed him a recent medical journal abstract stating TT should be performed in all patients with a multinodular goiter and hurthle cell neoplasm FNA. What I difficult patient I am! He said something about my not having to worry about having future ultrasounds of my nodules or FNA's. The nurse said I am getting TT and I was always getting a TT, but for some reason I am worried I'm not? The description was to start with the area of concern and do a frozen section, if not papillary cancer - no neck dissection and then move on to the isthmus nodules and remove that... I stopped him there with “my speech”. The form says TT with possible neck dissection.....do all thyroidectomy forms say the same this, or do some just say thyroidectomy or partial thyroidectomy?
Hi Lois. Hope the surgery goes well for you this Friday. Good Luck!
As for the surgery forms, it should say TT. For my first surgery, it said 'left side thyroid lobectomy', for the second, it said 'right side completion thyroidectomy'. And before each surgery, the nurses, anesthesiologists all asked me what I was going to have done and I had to sign a paper saying that I understood what the procedure was and that I was giving my consent for the procedure; before I was taken back to the operating room, my surgeon came in, confirmed what he was going to do, tried to put me at ease, then asked if I had any questions.
You, well all of us, need to be vigilant that we are getting the proper care and procedures. You should have complete confidence in your surgeon, so not sure what to tell you, but I think if you feel like you need to ask more questions, I think you should. If you trust the surgeon's nurse, I would call her with your questions.
Before my first surgery, my friends and family kept on telling me that if I wasn't sure about my surgeon (since I did have a 2nd opinion surgeon, from a different medical group), I could always cancel the surgery, but to me that meant having to wait for a new surgery date. In the end, I was glad I stuck with my first surgeon since I did need two surgeries - 1st surgeon would make a necklace incision at the bottom of my neck; 2nd surgeon was going to make the incision on left side of my neck the size of my left lobe to take it out.
Hope that helps. I will be thinking about you on Friday.
Thanks for your message and explaining what happened to you in the beginning of surgery. I have had 2 pre-opts as first surgery was cancelled. I do not know what is wrong with me. I had a bad case of nerves again this past week. Yes, my form says TT w. possible neck dissection. My doctor never told me he was only doing one lobe or partial. I checked on the web for surgery procedures in doing a TT, and it is medically described the way my doctor was telling me. I also checked about the lymph nodes & Hurthle and what he told me was correct, as endocrineweb states it spreads in around 10% of cases. He is a top thyroid surgeon, I can't believe myself sometimes...Okay, that aside I checked out relaxation CD's from my cancer center and started listening to them...really helped. I am feeling the pressure back in my throat again and my throat feels sore...I read this can be part of the thyroid problem. I have been having severe leg cramps, down the fronts of my lower legs, at night, that keep me from sleeping. Could this be thyroid related? A few more things to do to get ready...most important one...getting notes ready for anesthesiologist, also a brief note for my surgeon. I am not going to think ahead of myself...just take one step at a time going forward. My pre-op covered everything in detail, but I am bringing backup notes just in case. I really like my surgeon, he is so nice! Tomorrow around this time my surgery will be over ....yay!
Thanks again for your help! Lois
I think sometimes our doctors forget how non-technical we are with medicine. Sure they've been doing the procedure every day for the last 30 years, so it's a piece of cake for them, but I think they often forget that we don't have our thyroids taken out every day, so although it's medically necessary, and they are telling you what you need to know so you can survive your disease, it is not communicated to us in a way that puts us at ease.
I am glad you are feeling better about the surgery. I honestly think I would've backed out if I had to wait long enough to have my surgeries. My dad ended up needing a triple bypass 4 days before my first surgery, so I didn't have time to think about my own surgery during those days, all I could think of was 'is my dad going to make it out of this Ok?' The night before my surgery when I was visiting him at the hospital he told me how worried he was about my surgery the next morning, and there it was, my surgery fears came back, but at that point I wasn't going to turn back and call it off. I was still very nervous the next morning, but I knew it had to be done so I could find out if it was cancer or not.
Stay strong. Try your best to relax today. Sleep well tonight and be happy that it'll all be over in by this time tomorrow. We can share and laugh about our recovery nightmares when you are feeling up to it.
I think that I was so tired an so scared I didn't understand my surgeon. Fear took hold again! My hyper frightened state and extreme fear of surgery was due to past negative medical experiences. I am embarassed at how nutty I became during the last week!Immediately following surgery I felt so relieved and peaceful. All I had to worry about was resting and recovering, the easy part psychologically. It seems you had a really stressfull pre-surgery yourself but due to family circumstances, not your own mind! How did your dad make out with surgery? I stayed really busy the last few days as I had so much to do to get ready, and not enough time. I think God heard my plea and stepped in and provided the best medical angels to care for me just prior to surgery. I went in as the first group of patients early in the morning, 5:00 AM! I could see they all felt as nervous as me. We sat in a waiting room and a woman told us what to expect, when family members would get to see us just before surgery, afterwards and other details. It was nice to see the other patients holding themselves together. We looked at each other with an "I understand" smiles and walked together and went up as a group to the surgical floor, then into our separate pre-op rooms. I do not remember much after the surgery but I do remember the kindness of the pre-op staff who helped me. Going to surgery as a group seemed reassuring.
Thanks for caring! Lois
Thinking of you today and wondering how you are doing???
Hope all is well following your surgery and that you will continue to do well in the weedks and months to come.
Please know that our prayers and thoughts are with you.
I have been hanging around here a long time waiting very nervously for my surgery. I had a TT last Friday morning at MD Anderson/Orlando in Orlando, FL. I had a very good experience there and excellent surgeon and anesthesiologist. I cannot say enough good things about the expert care I received while there. For anyone who is looking for thyroid cancer treatment and or thyroid surgery in Florida, or other cancer care, I believe this is an excellent choice. Thank you for all the support I found here and caring friends. The surgeon did not find any papillary cancer on frozen section in one area of concern. The final pathology will determine whether there is any malignancy or not on hurthle cell neoplasm. My surgery, despite lots of other chronic medical problems, was not that bad and the worst of my pain now is from my herniated discs in my neck. My scar looks good, has steristrips along the incision. The drain is out. I have my voice. I did have slightly lower calcium levels in hospital & went home with calcium and pain med. RX. Post op is Thursday. I am still feeling dizzy/headachey but that could be coming from my spine or because I also accidently hit my head while in the hospital. I had high blood pressure while in hospital, but it seems lower/normal range today.
Thank you for caring and all of the great support! I am elated this surgery is behind me!
TT June 11, 2010
Hasimotos, FNA Hurthle cell neoplasm
On full thyroid replacement prior to surgery
Right before surgery I felt all of the good thoughts and prayers from so many people. What seemed impossible became simple. I had excellent care and all of my concerns were listened to and taken into consideration. Everything I hope for in a safe and uneventful surgery happened. I was the most neurotic pre-surgery patient imaginable, due to many past negative medical experiences from years ago and extreme (unecessary) fear. Now I have a great positive surgical/medical experience to remember! I also have a medical plan for future surgeries, I am so very happy this worked out so very well!
I am doing fairly well. So happy this is behind me! Hope you are well? Smiles, Lois
So happy to hear your surgery is over and that you are doing well.
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
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 ass.
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,
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.
During treatment for breast cancer, I underwent a full-body PET scan and a 9 mm lesion surfaced in my left thyroid lobe. I underwent a FNB and the pathology report came back as showing Hurthle cells with prominent vasculature. The differential diagnosis was adenoma or Hurthle cell neoplasm. My ultrasound did not show anything of concern in the right node (or at least I don't think it did -- I just talked to the radiologist during the procedure and have not yet seen the report). My head and neck surgeon and my endocrinologist and just about everything I've read on the internet suggests that surgery is the only way to deal with the uncertainty of the neoplasm.
Because I am taking a hormone drug for breast cancer (which makes me more fatigued and which accentuates all the usual menopausal side effects), I preferred to go through a lobectomy first, since I was advised that I have a 75% chance of avoiding thyroid medication if I only need a lobectomy. I do not want to deal with thyroid medication on top of the hormone treatment for breast cancer, if I can avoid it.
Anyway, I am meeting again with my head and neck surgeon, who came highly recommended, and I know from my preliminary discussion with him that he is going to push me to have a total thyroidectomy. One of my doctor friends then told me that he felt that my surgeon was being too aggressive in his approach. But, he is not a specialist in this field.
I am starting to obsess a bit since my surgery is scheduled soon, and I have a few questions:
For those of you who went through the two-surgery process to remove your thyroid, was it that much of an ordeal to undergo two surgeries to remove your entire thyroid, rather than having it done all at once?
And, for those of you who have had your entire thyroid removed, how long did it take before you were able to function and get back to work, if you had to? I am admittedly scared about adjusting to the post-thyroid world.
I discovered this chat room and it seems to be one of the best resources for info about Hurthle cancer on the internet. I found it very, very helpful to read everyone's comments.
By the way, my breast cancer was at a relatively early stage and, after the usual surgery, chemo etc.., it seems much less threatening. It has also thickened my skin for this latest journey.
Thank you all for any info or input you have.
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!
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!
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