Is there anyone out there with Hurthle Cell thyroid cancer?
How are you doing and how is your mother? I went back to MDAnderson yesterday and today but now I am wondering it I should make the effort and travel for another opinion as this could be so serious, I do want to be sure the surgery is done right etc. I had an ultrasound of my neck and thyroid again today over in Orlando. I did not have to have the FNA of lymph nodes but I was also unimpressed compared with the radilogy department over at Moffitt. Seems where one facility is lacking the other was great. The Orlando surgeon said 15 per cent chance of hurthle cell carcinoma from FNA, but this is not what I have been reading, especially with the report I received. What is your opinion concerning the percentages? Anyway thanks again for your help and hope all is still well with you!
Anyway, I would love to hear from you again & smiles!
I am trying to get through this medical maze. I am almost recovered from my personal bad experience at Mofit. I can't remember everything you told me before, as I was in a medical "stupor". I am now scheduled for surgery at MDAnderson Orlando. I think the surgeon is very good but not sure of the Orlando Regional medical system which does all the testing - pathology reports? I do not have your phone number and would love to call you back. I still have time to make additional decisions?
I wish "time" was not such a factor in all of Hurthle stuff!
Hi thank you for yur message! I am just getting used to this web site, so I am so slow in responding. Sorry about that. I do not know much yet about how it is after the surgery. I did read that most docs try to keep the TSH suppressed to low or nearly detectable levels after the surgery & with hurthle cell dx. Mine have been at nearly detectable levels since '94 to suppress the large goiter and growing nodules, i have had all the way since back then. I do not have any side effects when my TSH is lower, actually it is the opposite. When it is not really low I have zero energy, and all the worse symptoms of hypothyroidism, however, I still have my multinodular thyroid and i have been diagnosed with Hastimotos thyroiditis, so there is that also. I have not felt very well since last may when my thyroid medication was reduced, but there have different problems with the medication since then so that could also be a reason, the type I take was reformulated and then in very short supply.
I really hope you get to feeling better really soon, it is hard to go day in and day out feeling zapped. Thank you so much for writng me, finding this support discussion area has been a blessing!
Elaine is such a Godsend,isn't she? She has been my guardian angel since I found this site. Thought I didn't get hooked up at Johns Hopkins with her doctor, she gave me Drs. names and told me to get in whatever it took. Luckily, my endocrinologist studied at JH, so he was able to get me a referral with the Dr. he trained with. I wish you the best. If anyone can help you JH will!!!
Yes, she is great and I actually was so stressed out I didn't remember her name! I thought of going to John Hopkins and I may still in the future. I went back to MD Anderson in Orlando and after my bad experience over in Tampa recently, and with my total exhaustion and also being single and alone, I decided to go with the surgeon in Orlando. He apparently is gifted and was very kind and concerned yesterday and brought his staff in to meet me and reassure me they would be taking every precaution with my allergies. I also spoke with someone who had surgery with him recently, they had nothing but praise. The Orlando MD Anderson Cancer center works with the University of Texas MD Anderson Cancer Center with conference calling and treatment recommendations. Apparently every case goes through this. If they can't be treated with something in Orland, then a patient is sent down to the Texas facility. Anyway I am not well enough to travel by myself right now for surgery and with everything considered, I feel this surgeon (ear, nose and throat) is very knowledgeable and will be very careful. He does a lot of thyroid surgeries. He is actually very concerned with the lump on the isthmus (shows on my neck) although that area came back benign in the FNA. Today he is having more ultrasounds done of my thyroid again and neck and possible neck lymph node biopsy if indicated. I feel good that he is doing this. I will have another app't with him and then all the testing and anesthesiologist about a week before and I hope to have anesthesia testing done by my allergist in the meantime. This facility is latex free which is a blessing for me, as allergic as I am.
Sounds crazy but I am more afraid of the operation-that is the anesthesia and my allergies than anything else. Are you going to JH soon? It seems that is the best place or one of the best places to go with Hurthle cell. Please keep me posted!
Take care & smiles, thanks for the message!
Yes, she is great and I actually was so stressed out i didn't remeber her name! I thought of going to John Hopkins and i may still in the future. I went back to MDAnderson in Orlando and after my bad experience over in Tampa recently and my total exhaustion and also being single and alone, I decided to go with the surgeon in Orlando. He apparantly is gifted and was very kind and concerned yesterday and brought his staff in to meet me and reassure me they would be taking every precaution with my allergies. The Orlando MDAnderson works with the University of Texas MDAnderson with conference calling and treatment recommendations. Apparantly every case goes throuhg this. If they can't be treated with something in Orlando then a patient is sent down to the Texas facility. Anyway I am not well enough to travel by myslef right now for surgery and with everything considered, I feel this surgeon (ear, nose and throat) is very knowledeable and careful. He is actually very concerned with the lump on the isthmus (shows on my neck) althought that area came back beign. Today he is having more ultrasounds done of my thyroid and neck and possible neck lymph node biopsy if indicated. I feel good that he is doing this. I will have another app't with him and then all the testing and anestetholgist about a week before and I hope to have anestehsia testing done by my allergist in the mean time. This facility is latex free which is a blessing for me, as allergic as I am.
Sounds crazy but i am more afraid of the operation-that is the anesthesia and my allergies than anything else. Are you going to JH soon? It seem that is the best place or one of the best places to go with Hurthle cell.
I'm glad you finally found a surgeon you are comfortable with. No matter how scared of surgery you are, you have to have faith everything will be ok. You have to go in positive and stay positive. You need a TT, no way around it. I can almost guarantee you, after your surgery and RAI treatment, once they get your meds adjusted right, you will feel 100% better. You seem to have many things going on at once, not just HCC, but Hashimoto's too. With your thyroid gone, you will have a clean slate. You may be surprised and find you'll feel better than you have in years.
I'm not saying it's going to be smooth sailing all the way as it will take time to adjust your meds, but you will get there.
I'm 9 days post surgery for a liver resection. My HCC first went to my hip bone, then my liver, and there was nothing I could do to stop it. I just pray now that it is in remission for a very long time.
My email is: email@example.com if you'd like to talk more person to person.
Stay strong, you can beat this!!!
I have been reading everyone's emails in this site and was recently diagnosed with Hurthle Cell thyroid cancer. Mine was 3.5 x 3.3 x 3.1 and took 3 hours to remove. They didn't find it was cancer until a week later and still have to go back in and now take the right side out in April. My TSH was 4.53 before surgery and 5.65 a couple weeks after so they started me on thyroid meds until the next surgery. I have been feeling really run down but have gotten some energy back. Lately have been feeling anxious and "snappy" at times. They also thought my thyroid was Hastimotos thyroiditis after they removed the left side. Still in the early stages of everything, needing the other surgery and then 3 weeks of the low iodine diet prior to RAI in June. I am concerned about my energy then and figuring out what I can eat. I work as a RN and work 12 hour shifts, of course hard to do without any energy.
I hope things get better for you and you are right that this support discussion is very helpful. I have learned alot just from reading everyone's responses but still feel I don't know alot about this cancer. My endocrinologist researched Hurthle cell cancers when she worked at Mayo but said it was hard finding out any information since there were
not many cases out there.
Hope that energy returns soon.
You might ask you endocrinologist or nuclear medicine physician about taking shots of thyrogen instead of not taking your thyroid replacement harmone prior to your RAI treatment. It eliminates the perioed of hypothyroidism which apparently is very difficult to deal with for many people. I had the choice of one of the other and after talking to my endocrinologist and my head and neck cancer surgeon(a well regarded expert on thyroid cancer at U Cal San Francisco), I chose to take the Thyrogen. I had one shot on Monday, another on Tue, had the dose of Radioactive Iodine on Wed. and a whole body scan on the following Wed. I was fortunate in that it appears that the RAI was taken up by the Hurthle Cell cancer since this happens in only about 20% of cases of Hurthle Cell Cancer. I had what appeared to be a metastisis in a lymph node below my left breast bone and some uptake in my thyroid bed which was likely residual thyroid tissue. I will have another whole body scan in June and a PET scan in June to see if there is any indication of cancer. I also had a TSH test the week of the RAI and another in January. The January level was near zero which was great. I will have another TSH blood test in May and see my endocrinologist. I will see my surgeon in July--she did a sonogram on my neck in January for a baseline and will do another in July--again to look for any signs of remaining cancer. I think I will continue to have follow up test every 6 months for a couple of years then perhaps go to once a year--basically to look for a recurrance which happens in 34% of the cases.
The low iodine diet which I had for 6 weeks prior to the RAI was limiting but not too terrible--the diet on the Thyroid Cancer's Survivors website is straight forward and reasonably easy to follow.
Hope my experiences are helpful to you. Doctors are different and the details can vary but I think the pattern treatment is the same.
I am so grateful to have found this website and information about Hurthle cell cancer. I have spent over a week straight researching the subject and information is very sparse. I occasionally find helpful information only to find that some it contradicts the information I have been trying to find, which is, exactly what percentage of FNA Hurthle cell neoplasms turn out to be Hurthle cell carcinoma. I have read all different percentages. This would have been helpful information in making my decisions for surgery. The surgeon I am seeing said only 15 % but I have read recent it is higher, more like 30%. And then there are all the factors built into that.
There is some good info. out there and I especially like what was written at emedicne and even the mayo website gives some basic helpful info. I ran out of ink again in my printer so I think my researching has come to an end. I went back to MDAnderson in Orlando yesterday and have made the date for my thyroid operation. Because of all my thyroid issues, supposed Hasimotos DX, my age which is 59 and all the nodules over 7, plus my medical condition - we decided to take the whole thyroid out the first time...which is what all the doctors i saw suggested. i have been on high dose thyroid medication since 1993 or so and my thyroid probably does not function on its own. I have severe allergies and when they treated me with compassion, kindness and offering precautions concerning the allergies I decided to hand the whole thing over to the experts there. I had thought of traveling to John Hopkins or elsewhere but i am just not well enough to do so. Although i am on thyroid medication I have little energy and do not feel well, i do have other medical problems. Anyway i hope i have made the right decision. I only had my thyroid FNA come back with the dx of Hurthe cell neoplasm. Today the surgeon is having me have another ultrasound of my thyroid and then my neck and possible FNA of neck lymph nodes if anything looks suspicious. I am truly afraid of surgery given my history of severe reactions to medications and breathing problems etc. I am going to have to get through this somehow. Part of me just wants the whole thing to go away; I keep thinking there is a percentage/chance, that I do not have cancer yet. I now this is a serious matter and I cannot afford to put off the surgery any longer. I am also allergic to iodine so there is that also which could be a problem later on.
Anyway, everyone here has been super nice and helpful. They are all very courageous, by comparison I am truly lacking in that area currently. i am so sorry you are having to deal with this and also working so much. Did you take time off after your surgery, is it possible for you to take a medical leave until you are back on your feet, or maybe work less hours? Of course I don't know your situation, but I would think that now is a time you would not want to get run down. Thank you so much for your very kind and helpful note. I hope today was a little bit better for you than yesterday.
Just got back from hematology and found my hemoglobin is back up to 10.9. It had dropped to 9 after taking out the left side of my thyroid. I will have my right side removed on April 16th. My biopsy also came back as a Hurthle cell neoplasm. The pathology took a week, as Hurthle cells are hard for the lab, and then it came back as Hurthle cell cancer. Since it was past the week of the original surgery they had to wait 2 months to take the rest out. I can understand it because my throat was so swollen, couldn't eat anything but liquids for a week after the first surgery and still felt like it was hard to breath at times.
I am looking into leave of absence after the next surgery and around the time of the RAI. Unfortunately I have to work. I get child support for my kids but one will be done in another year and the other one is a sophomore. He left me alot of debt and still trying to climb out of the hole. Plus he rarely sees the kids. The costs of all this are not helping. My first hospital bill was over 27k and I have to pay $1,900. I was a stay at home mom once the kids were born and had to go back to work after the divorce. Being a nurse helps where you don't have to work 40 hours a week but the 12 hour shifts are killers. I have talked to my boss about going down to 8 hours after surgery and she was open to that. It helps having a great and understanding boss. I have only worked at the hospital for 10 years but love it there. I really can have apathy for my patients now when they feel short of breath etc.
Will all your allergies and health issues, that has to be scary. Especially when you were talking about the breathing issue and it is going to get swollen around your windpipe when removing the thyroid. I am only 48, going to be 49 this summer, and have never had health issues besides arthritis in the knees and now tennis elbow from lifting patients. Things have to get better! It is shocking when you hear the word cancer and it is hard to fight when you feel tired and weak. I have seen many fighters in the hospital I work in and they help push me on. We do alot of bone marrow transplants and those people are something. To be able to put them through what they have to go through and being stuck in that hospital room for months sometimes. I couldn't do that, but then I guess you can do anything when you need to.
What was that song years ago, "No Worries, Be Happy Now".
I am behind of all of you still needing to have my surgery. I just read a really good review about MDAnderson in Texas, and that made me feel better about going to the one in Orlando as they coordinate patient treatment plans. I was a single parent with a pain ex who made my life more difficult. It was really tough especially financially, so I do understand! Glad you have an understanding boss! I have been through some very hellish freaky extremely painful times as a very ill person. I have a real fear of ever becoming that ill again! Not being able to breath always makes me feel scared, with the asthma and throat swelling at times, guess it is best not to talk about it right now. It is one of the worst feelings, but so is extreme pain.
If your hemoglobin dropped, what does that mean you were anemic? The lump in the front of my neck is uncomfortable and coming back now (they drained the part that was liquid). Well I have to get ready for my hour+ trip to Orlando, I don't want to be late! Thanks for writing me. This seems to be the best place I can find for support and answers, referrals, treatment recommendations etc! I am so glad I found it!
Take care & smiles,
Hope your trip went well Lois. I can't imagine driving that far for anything! I will drive up north to see my parents but that is a 3 1/2 hour trip. I live in the Twin Cities of MN and they live up on the Iron Range. My doctor found my enlarged thyroid and that I had iron deficiency anemia all at the same time. Have been taking Iron to get it up but then lost a unit of blood when I had my surgery which dipped it to 9. Now I am back up to 10.9, which is higher then when they found it so the Iron pills are working. My endocrinologist also found I was vitamin D deficient, which doesn't surprise me since I work the night shift. Need that sunshine, which is also hard sometimes in Minnesota.
Support is important. Sometimes I feel all alone, I have siblings near by but they are busy with their own lives as is everyone else. Sometimes you just need to talk to someone. I am involved with my younger sons sports but basketball just finished and I usually don't go to track meets. They last forever. This summer he does baseball which I usually help with coaching and scorebook. Hopefully I will feel up to it this summer.
Just returned from Johns Hpkins yesterday after a week. If you need me, contact me at firstname.lastname@example.org.
Best of luck and I look forward to hearing from you!
I was diagnosed in July 09 with Hurthle Cell Carcinoma, stage 3 and would like to correspond with you if that is possible. I am very interested in your visit to Johns Hopkins and your overall experience with this cancer.
Please feel free to write me at my email address: email@example.com
I am also stage III. It is easier to deal with this if you think of this type of cancer like you would think of Herpes. It is a gift that keeps on giving and never really goes away. It may hibernate for awhile, but it's usually there. It has a possible shelf life of 15 years. I have had over one year to research and it's not that "good" type of thyroid cancer. Best not to dwell on it, rather deal with it. Stay in the moment too!
Hopkins is awesome and I cannot say enough positive things about my experience there.
I just returned Saturday after spending one week there for various treatments.
I look forward to hearing from you.
But eneded up with Follicular Cancer of the Thyroid. Studies that I have read say that it is between 30 - 45% malignant, but don't say how many of them are Hurthle cell cancers. The best way to find out is to have it removed and a dissection biopsy done! Hugs as you go through this!
Can you post your pathology findings and let me review?
Hurthle cell cancer can ONLE be made after a removal of the thyroid and final pathology report.
Thyroid Gland Left Lobe Lobectomy 6 gms
A. Follicular Oncocytic Carcinoma (Hurthle Cell Carcinoma), 1.5 CM's with Capsular and Extensive Vascular Invasion (See comment)
B. Extrathyroidal extension is Absent
C. Metastatic Follicular Oncocytic Carcinoma in one of 3 lymph nodes
D. Normocellular Parathyroid Tissue
E. Tumor Present at the inked (green ) Margin of the Resection (capsular surface
F. AJCC Ptthologice TNM Stage pT1N1aMx
Comment: As indicated above the 1.5 cm left thyroid lobe nodule represents an oncocytic follicular carcinomal with capsular and vascular invasion. The presence of vascular invastion is confirmed by immunohistochemical staining for CD31 preformed on blocks C and E. The <0.1 focus of metastatic carcinoma on one parithyroid lymph node is best appreciated on teh H & E recut and CD31 Immunohistiochemical stains preformed.
Can you post your pathology findings and let me review?
Hurthle cell cancer can ONLY be made after a removal of the thyroid and final pathology report.
The T1 sounds good, but I would keep an eye on the N1.
Was any HCC found inside?
Finding anything inside a lymph on presentation should put you on high alert for the follow -ups. Otherwise it looks geat!
All the best,
Not sure what that means???? Can you explain! Still have to have the body scen for mets........ also to see if theh Herthle cell will take up iodine. Visit to endo's office was pretty discouraging right now. She is most concerned about it being very vascular,that I am above 45 and it was not encapsulated.
All I was asking was this, any hurthle cells found inside the lymph node as noted on the TNM stage factor?
1 lymph node out of 3. <0.1 cm in size. The surgeon did not feel that it was inside the lymph node itself, but on the surface and caused by frictional contact with the tumor.
I was just diagnosed with Hurthle cell cancer. I am looking for information as I have already had my entire thyroid removed but am getting ready to start the diet, shots and radiation. Any advice...? Especially on the diet side?
Tell me a little about when you were diagnosed, your surgery dates, and when you start the diet??? I was diagnosed ono March 10'th. Had half of my Thyroid out March 4'th and March 12'th. Starting to go off my meds on Monday. Test shot starts the 26'th. I too was diagnosed with Hurthle Cell Cancer. I got information on the diet from the Thyroid Cancer Survivor's website....they even have a cookbook on it.
I had an FNA of Hurthle cell neoplasm confirmed by two different pathologists/places viewing the same slides. I can't have my TT surgery now, it was postponed, because I am having some other possibly serious problems, possible blood clot in my portal vein and abnormal blood tests. I am trying to have a CT scan or MRA but allergies to contrast and abnormal blood tests are holding this up. FNA said "cellular specimen with prominent hurthle cell features, consistent with Hurthle cell neoplasm" the second said "suspicious for follicular neoplasm with hurthle cell features", and "our diagnosis is in exact agreement with that rendered at.. (other place)".I think this means I have a Hurthle cell adenoma or hurthle cell carcinoma? Could I have my thyroid out and it would not be cancer? Do Hurthle cell adenomas turn malignant in time? I wrote about my dilemma in a separate area here but had no responses. I definitely feel alone in this. Before I thought I would just be dealing with severe allergies going into surgery, but now this!Do I really need surgery? The FNA nodule found with Hurthle cell was small .7 cm. Later ultrasound, after the FNA, said the largest nodule in that area was 1.4mm? Did it shrink? Did they miss it? It said the other nodules all had irregular margins/borders but were under 1 cm? Two other areas were tested during the FNA and showed benign lesions. I have Hasimotos also. Anyone have any ideas/information concerning my questions above? If it is a small area, and malignant, would it be less likely to be spreading?
My FNA was the same as yours and was Hurthle cell carcinoma. I would run to the first surgeon and get the thyroid completely removed if I were you. This is a quick growing, aggressive type of recurrent thyroid cancer. Why the wait?
I know you have issues but HCC is a killer when left untreated.
I had surgery scheduled for this past Friday and although I was about as nervous as a person could be due to fear of the anesthesia only, not the surgery, I got sick as a dog for about 5 days, had elevated white & red blood counts, abnoral bun, creatine bun/creatine ratios, some other abnormal tests and had severe abdominal pain and diarrhea. I lost about 5 pounds in two days. Also had/have chest pain. My GP sent me for ultrasound and it said I might have a blood clot in the portal vein by liver. Since the operation was postponed until I am well enough to have it, I saw the allergist who said he would do the anesthesia testing, so I would have less chance of an allergic reaction. I drove all the way to Westin. He changed his mind and now doesn't want to do it. Now I am trying to figure out how to either have a contrast CT scan (bad for RAI treatment & i have sever allergy to this contrast) or MRA scan with contrast which I could have a bad reaction to and my kidney function blood tests are good enough to have it. In the mean time I have reduced my thyroid medication, for some reason I seem to have become hyperthryoid (felt like) following the FNA. Anyway, at least my pulse and blood pressure are normal range now. I can't seem to get to the operation part. I am working hard at getting there though. Part of my confusion is that followup ultrasound said that the largerst nodule in the right lobe (where .7 cm hurthle cell was on FNA) is now 1.4 mm? It seems it shrunk, could it be going away? And then there are the variances of percentages 15-65% of hurthle cell malignancy? My doctor says 15% but the new ATA guidelines say it is more like 20%? Yeah, the allergy thing has totally freaked me out. And then there is the size of the tumor also, mine is small....I have read all kinds of things about the size, but that seems to be of less importance now. My neighbor told me today I am not sick enough to have cancer, I would be more ill. Crazy huh? After someone has gone through enough serious allergic reactions like me, they tend not to trust the medical profession, which has a bad habit of undermining the danger and after-effects/trauma of having survived these experiences. But I am still working towards the rescheduling, just as soon as I am well, and hoping to have a little more info/reassurance in the allergy department. I have my cardiologist appointment and then neurologist app't Wednesday so I hope they can encourage me also. My herniated disc problem is very bad right where the thyroid is. I hope the surgery doesn't mess that up...I need that surgery too! Would be great to know I can safely have anesthesia for that also.If I didn't have this crazy allergy history (think of putting your hand on the fire over and over again and then going back for more) I would have been past the surgery already. I have had some nasty comments from health care professionals recently; it makes me want to just forget about all this. Hey at least I am still alive, who knows what will happen to me in surgery... I am that allergic to medications. Faulty thinking? Maybe. Sorry to be rambling & grumbling along here, I am totally exhausted & frustrated. There seems to be an advantage to knowing in advance, what was going on. Thanks for the message, it helped. I hope you are doing very well?
I am printing out your message and then I am going to past it on my refrigerator at eye level. Thanks again.
Hurthle cell adenoma vs. carcinoma cannot be determined until it is removed and totally dissected and tested. I had a HC Neoplasm that ended up as a carcinoma. Many more of them are adenomas. Take care of your other problems but ask when you can have the surgery to have it removed. There is a theory that adenomas become carcinoma over time, but this has never been proven. As far as the size it could be a measurement problem, and the angle that they were measuring from. In my case the ultrasound showed a 2.5 cm lesion, when I had the biopsy it showed a 2.1 cm lesion, and when it was removed it was a 1.5 cm lesion. Many of these lesions are cystic in nature so they can be hard to measure. Good luck to you and let us know what happens!
I really appreciated your taking the time to write some things out for me, along with Elaine's message, it has really helped. I read the same thing about adenomas possibly turning into malignancies but no proof of that. Along my journey with this I have experienced a few truly awful behaviors by a few medical providers. Luckily I have a lot of other great medical providers that have provided me with excellent care and treatment, so I am shaking off the discouragement. I am having an MRA to rule out the clot next week, and will have to wait for the result before the surgery. I am still looking into skin testing for anesthesia if I can arrange that. If not, I will schedule my surgery without it. When I had my FNA they used alcohol instead of the regular bedidine (sp?), or something else as a transducing liquid. Some of the ethanol entered the needle and was injected into my nodules with each pass along with the lidocaine injections. It was very painful afterwards for at least a month. I wonder if this provided some sort of ablation of the biopsied nodules? To go from .7cm to 1.4mm seems to be a big reduction. I also read that nodules frequently go through a necrosis after FNA, but of course ultrasound dimensions cannot truly be compared. All my thoughts on everything are just to ease my mind that I haven't had the surgery yet. All my doctors have said I need the whole thing out, especially since I have Hasimotos. I think I had a recent hyperthyroid experience which was causing some problems for me. I reduced my thyroid medication a little and now blood pressure, pulse, chest pain are less/lower. Since I saw my cardiologist & neurologist yesterday, I have reassurance that once the MRA is done, and results are clear, I am okay for surgery. My neurologist told me what to tell the surgeon and anesthesiologist about my C5-6 severely herniated disc/touching the spinal cord - to be extra gentle, no sudden movements, not to hyperextend the neck too much, & extra care with intubation. Even if this hurthle cell tumor is not malignant now, I am tired of the occasional hyper episodes and feeling "thyroid yucky" most of the time. I have over 8 nodules throughout the thyroid, since 1993, which have not been really followed closely until now, with the appearance of the new visual "isthmus" lump. It makes complete sense to have the surgery, and I am dealing with the fear of an allergic reaction as best as I know how. Anyway, I am on my way forwards, it is just taking me some extra time, unfortunately.
Thank you for caring enough to write me. It has help so much just to know I am not completely alone in this! This seems to be the only place that discusses Hurthle cell in detail. I hope you are doing well? Where are you now in your experience with this?
I am still on the LID and 8 days without Thyroid medication! I am feeling pretty good still, and trying to carry on my normal lifetime activities. I have been amazed at the support of my friends and family and the offers that are pouring in to help and bring meals for my family while I am in isolation. One came from a good friend that I haven't seen in years, but send Christmas cards to every year! Some days are good for the famuly, and some days are awful but we are taking them one day at a time!
Yesterday I had an appointment with my PCP who started this whole merry go round ride. All because he noticed that I didn't look "quite symetrical" and slightly swollen on the left side and got that ultrasound. I thanked him for being such a good doctor and saving /extending my life! He later reviewed my chart and called me back to make sure that I had follow-up appointments with the endo as well as a script for the synthroid, bloodwork, etc. RI starts in 11 days! Making my list of things I still need to get and do before the time. It sounds as though you have a plan for finding out what you are dealing with and I'm sending success prayers your way as I type this!! Have a great day today!
Thank for telling me about what is going on with you right now. I am amazed that you are feeling so well without any thyroid medication, that's great! I guess you are not doing the thyrogen shots I read about? Yes, you are so lucky to have a very good PCP! I have a very good internist who saw me right away when I discoverd my new lump and that began this long journey for me. I finally received the first cancer centers surgeons notes, he finally signed them. It would have been helpful to have had them sooner, it is wrong that he wouldn't sign them until I wrote a letter and sent it certified mail complaining I needed them for my decision making (I made over 4 offical written requests).It looks like you are over on the other thyca website also? Is that correct? I reduced my thyroid med as I was feeling hyper and having chest pain and irregular heartbeats. Now I realize it could have been the hasimotos acting up, not a cause of the medicine. You are so lucky to have friends and family to help out. I am severely lacking in that department, it has to do with being chronically ill and having moved away from my majority of friends four years ago, also I have been very anti-social this past year, just feeling so very tired and exhausted. My plan is sketchy but I did call the surgeon's office yesterday a to tell them I what I have planned, the MRA - they said just to call when I am ready. Getting ready/preparation is a lot of work isn't it? Where will you be in isolation? How long? I really hope this goes well for you! I am sending prayers for you also! Thank you so very much for your support, it means a lot! Lois
Yep I am at the other site as well. I will be isolated in my bathroom that has an attached bathroom to it. I will be isolated 9 out of 10 days....2 for the test shot and 7 for the full shot. If they add any more time I will scream. I'm making a list of everything that I need to do including us moving hubby's clothes to my son's room...he is in college, bringing things that I will need to the bedroom, making lists of stuff I have to get. I just got an e-mail from a friend of a friend who I have never met who has offered to cook me a meal......cards coming in from all over the place....the support is AMAZING for me to see! Just a suggestion....call some friends, send them an e-mail, etc. You may be amazed at how many people will offer to help you out! Sorry that you have to jump through hoops to get records and notes. I am experiencing the same thing....I ask for things as I am at the doctor's office, so that I have them. When I went to my endo report they still had not received the path report...so I let them copy mine! So glad that I have people here to provide support!! It really does help! We are all in this together!
Will you go crazy hibernating in there? Wow, that is a long time to be holed up in the bedroom! Is that a normal time of isolation? I hope you have interesting things to do while isolated. What will you do? Can you have a computer, a tv of course, & movies? Books? How will you get your food? Will it be left at the door or will you have your own mini fridge and hot plate? I have memory problems and with the usual constant interuptions at doctors offices (not the god ones), I forget to ask for the copies. I actually go to the hospital records department and get my own records, like you I have them but the doctor sometimes does not! I'm so glad you have so much support. I have found that my neighbors seem to be my best support. People who I thought would care, have acted like they don't know me now! Well, maybe after I have a definite diagnosis some people might care. I feel like I am in limbo. Can't move forward until I know I am okay for the surgery. I am feeling a lot better than last week! I have had this problem for such a long time - since 1993. They didn't seem that concerned back then about nodules and cancer. I am on a really high dose of thyroid medication, so it has kept everything suppressed. I do not feel well, and have not felt well as far back as I can remember. There is a possiblity I will feel better without the thyroid & hasimotos thing going on? If I had not gotten sick last week, I would be past the surgery and probably have the final pathology results now. It has been really hard waiting! I am glad there are support websites, otherwise I don't know how I could possibly deal with any of this. The information here is very helpful!Thanks for for your current update! The RAI routine is actually very interesting and unusual, despite the fact it has to do with cancer and is a real inconvience. I never knew people had to go through something so crazy like this before! Well, I am praying that everything goes very well for you and you actually have a mini vacation of sorts in your bedroom! Lois
My daughter is lobbying for a mini frig that can go in her room after I am finished with it, but I don't think that is going to happen. I have a TV, portable DVD player, computer (desktop which I turned into wireless.....in case anyone else has a desktop that they need to make wireless I can tell them how), I'm getting books from the library, watching DVD's that I bought and never watched.....you know with work and 2 teens there is never enough time. I also have phones all over the house that have an intercom so if I need anything I just page someone to bring it to me if there is anyone at home....
As for the food.....I can go downstairs when nobody is home, so I'll cook my own breakfast and lunch....cook dinner at lunch and put it in the frig.....at dinner time they will warm it up for me, and leave it at the doorway......the big joke in our house is how they will have to run down the stairs and I will have to run to the door to beat the dog will DEFINITELY want my dinner!!
So far not bad with they hypo symptoms. No meds for 11 days now, and on LID for 11 days!! Getting a bit tired by night but still able to do my work. Have had a hormonal migraine.....mild one though for the past 3 days off and on......
Hopefully you will be out of your limboo soon and have a diagnosis and you can move foreward. Will keep you in my prayers that this happens soon. Make sure to let people know what you need and don't be afraid to ask! Next event....bloodwork on the 21'st to see what my levels are!
So you really have worked things out! What about the walls, will the radioactivity pass through the walls and affect anyone else? Funny about the dog wanting your dinner! So if you move around the house is safe, i mean there is no radiation lingering after you have left? If I need this treatment it should be very easy for me as I live alone in my house, except for my chihuahua, guess she would have to visit the neighbors!How long wil tis go on for exactly? Well hope the diet has worked our and your levels are where they should be. Did you consider the thyrogen?
Well am still having chest pain, but no irregular heart beats. I forgot to take my thyroid medicine for several evenings...I take natural thyroid, Nature-throid medication and it works better if it is divided during the day. I have been falling asleep on the couch and when I wake up it is morning. I am a little tired, I feel like I am moving in very slow motion compared to the rest of you. I have been telling myself maybe I do not have a malignancy as I have had this for so very long, then again I remind myself this is serious and I haven't felt right for the past year. Regardless, with all the nodules-over 8, hasimotos and a new visable lump with pressure swallowing, I think it is time to have the surgery. Hopefully that will be not too far away. Thanks for the message & all the info.!!!You sound very upbeat and that helps me feel better also! Lois
We are still working out the details but are getting stuff ready and a list of things that we need to do! Radiation does go through walls as well, but my bed is more than 6 feet away from the wall near where anyone would go, and I am setting up things along that wall as well.
When I walk around the house, they say that the radiation is minimal, but I will be wearing gloves to keep the radioactive sweat from getting on anything that I touch. Maybe an overkill, but the tech said that it would be fine.
I will be in isolation 2 days for the test shot, and then out for 24 hours. Not sure if there will be any restrictions at that time or not. Then I will be in isolation for 7 days after the full dose.
My doctor did not consider Thyrogen for this ablation as she feels that the Hurthle cells will be more accepting of the iodine with LID and going hypo. I really don't feel too bad being hypo at all! Just tired....now not very hungry, and putting on weight with salads and the LID. This morning woke up with a bit of horseness, headache, and nausea, which the surgeon says means that I am going hypo just fine. I am still tired and when on my feet too long my back starts to ache. Hands aren't moving as well today to type. I asked my surgeon about my needing new glasses and he said that could be because of the hypo or my age....and not to get checked for at lest 6 weeks after my treatment.
Don't spend time worrying about if you have a malignancy or not....that will be determined in the future. Put your energy towards correcting your health problems that you have right now! Some days are more positive than others....today is less positive, but I'm sure that something will happen to make the day a better one.....God does always provide that! Blessings, hugs, and continuing health for you! Make sure to put those meds where you remember to take them!!
I can tell you are hypo by your recent posts. I get hypo very fast when I forget my medication. In about 5 days of forgetting to take my medicine I can't get out of bed and I am depressed and everything else you have talked about. I saw your other post here about the endo. not being very optimistic. Let me tell you from over 20 years of being chronically ill with other health problems, doctors do not know everything! So, I want you to take on your own advice and not spend time worrying, you have good and bad days like me, but God is especially looking out for you and your family, I just know it! Otherwise, how could you have been so upbeat about everything you have been going through lately? There are people here with so much positivity and so many problems, who have been through so much. I keep asking myself, how do they do it? And always remember, you are that strong too & you can always seek out a different & more optimistic opinions at any time you choose, even if you just need it for some reassurance. I think you are doing great with all of this! And your writing here has really helped me want to get my surgery done and overwith! Thank you for your lovely posts & strength! Smiles, Lois
I think that it was all the stress.....dog getting sick, daughter spraining her ankle, hubby stressed at work. I wasn't sleeping all that well. One night with a sleeping pill.....and the next day I felt back to my old optomistic self. I'm still feeling good and think that I have finished the preperations for the radioactive iodine tomorrow. I'm upbeat and positive once again, and my hubby and I have spent the day finishing the preperations, talking, and just enjoying each other's company! We've even talked so much about things we want to change about our relationship after the treatment is over to make things even better.....we've been married for 24 years as of May 3rd. I'll be in isolation during my aniversary, but will celebrate afterwards! Thank you for your posts and your encouragement. I had to remember that everyone has bad days and good days, and that 1 bad day does not mean that tomorrow won't be better and brighter! Wish me luck tomorrow!
Actually, your sharing your experience has given me the most insight into all of this. It is interesting that you and your husband having been talking so much, that is great! I am also glad you are feeling better. When I am hypo I can't sleep at all hardly and feel horrible as a result of that. I'll bet you can't wait to be back on thyroid medication! Will you be posting all the way through your RAI & while isolated? I am very interested in how you you do through all of this. Thank you for writing me & sharing. I do not feel I fit in at the other group as I haven't my TT yet, and I don't have a diagnosis,as so many already have with papillary. I have tried posting there but only received a few answers. Interestingly enough, some with advanced hurthle cell cancer were kind enough to write me over there. About preparing for the RAI, did you not use Thyrogen hoping for the hurthle cell to better uptake the raidation? I really hope this works well for you and the hurthle cells are receptive! Well, I hope all goes very well tomorrow and you become less afraid of everything after that. Take care & God bless! Lois