Recurrent Hurthle Cell Thyroid Cancer - my story

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  • weberdns
    weberdns Member Posts: 154
    loispol1 said:

    Hi
    I did call and found out they held up my thyroid tests for two days as they seemed to need to call my doctors office over and over. I am thinking they were trying to illimate some of my tests. I also worry that holding the blood and not sending it immediately for testing could cause incorrect results. When I complained I was told they were going to call the lab where I went and tell the personel there I complained. It does absolutely no good to complain here in Florida. It is take it or leave it and i am so sick of it. Also, my tests are not back yet because they held them up. I may take this matter to the highest level, if it is even worth it, I really do not have the energy for this.

    On a more positive note you only had 2 days of isolation? Wasn't it going to be longer than that? I am really confused by all of this. You sound like you are doing very well, any side effects so far? I truly hope not and you are on the way to total recovery now!

    answers to your question
    I had 2 days of isolation for the test dose, out for 1 day, then in for 7 days for my full dose. I am having minimal side effects. Mild headache, nausea, and fatigue, but all in all not bad. I still have 4 days of isolation left until Thursday afternoon.
  • loispol1
    loispol1 Member Posts: 84
    weberdns said:

    answers to your question
    I had 2 days of isolation for the test dose, out for 1 day, then in for 7 days for my full dose. I am having minimal side effects. Mild headache, nausea, and fatigue, but all in all not bad. I still have 4 days of isolation left until Thursday afternoon.

    So Glad!
    I am so glad things have gone so very well for you! Thanks for explaining the "in's and out's of all of this! Have you started back on thyroid medication, or when does that occur? I am really praying that this knocks the hurthle cell out of the ball park for you!
  • weberdns
    weberdns Member Posts: 154
    loispol1 said:

    So Glad!
    I am so glad things have gone so very well for you! Thanks for explaining the "in's and out's of all of this! Have you started back on thyroid medication, or when does that occur? I am really praying that this knocks the hurthle cell out of the ball park for you!

    I started back yesterday....
    72 hours after my full dose I was able to start back. Misread my instructions as they were confusing and thought it was 72 hours after the final scan. Not after the dose, but I'm back on track! Also off LID!! Yippee! Feeling so much better already! Thanks for the prayers! I'm hoping that for me as well!! will keep you updated!
  • loispol1
    loispol1 Member Posts: 84
    weberdns said:

    I started back yesterday....
    72 hours after my full dose I was able to start back. Misread my instructions as they were confusing and thought it was 72 hours after the final scan. Not after the dose, but I'm back on track! Also off LID!! Yippee! Feeling so much better already! Thanks for the prayers! I'm hoping that for me as well!! will keep you updated!

    Thanks for update!
    Hope you will start feeling less hypo and much better soon. It seems you did very well with only minor side effects? Are you out of seclusion yet? Lois
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    loispol1 said:

    Thanks for update!
    Hope you will start feeling less hypo and much better soon. It seems you did very well with only minor side effects? Are you out of seclusion yet? Lois

    The best news ever!
    I found out a week ago Saturday that my thyroglobulin is undetectable, for the first time in three years, which means I AM CANCER FREE!!!!!! I never thought I would hear those words. Although I know it can still come back I thank God for answering my prayers and for all the good doctors who treated me for this outcome. I can finally breathe.

    Never say never and never give up. There is always hope and miracles do happen.
  • loispol1
    loispol1 Member Posts: 84

    The best news ever!
    I found out a week ago Saturday that my thyroglobulin is undetectable, for the first time in three years, which means I AM CANCER FREE!!!!!! I never thought I would hear those words. Although I know it can still come back I thank God for answering my prayers and for all the good doctors who treated me for this outcome. I can finally breathe.

    Never say never and never give up. There is always hope and miracles do happen.

    Terrific news!!!!
    Yay!!! I am so delighted to hear this, with all that you have been through! I'm so happy for you!!!
    Lois
  • mollyd350
    mollyd350 Member Posts: 4

    The best news ever!
    I found out a week ago Saturday that my thyroglobulin is undetectable, for the first time in three years, which means I AM CANCER FREE!!!!!! I never thought I would hear those words. Although I know it can still come back I thank God for answering my prayers and for all the good doctors who treated me for this outcome. I can finally breathe.

    Never say never and never give up. There is always hope and miracles do happen.

    wow! That is such great
    wow! That is such great news. I've been thinking of you and hoping you were getting through things. Inspirational. Thanks for sharing.

    M.
  • mgnewton
    mgnewton Member Posts: 1
    Thyroid Cancer
    I was diagnosed in 1992 with right lobe folliular thyroid cancer. I was treated 3 times with RAI, it later came back in my T-spine. I went to a clinic out of the country for autologous vaccine. The spot on my spine is still there but inactive. Don't give up hope, it has been 18 years since my diagnosis and I am still here. You are being sent a special prayer from me, each day at 9:00 pm MST I will pray for you and a complete healing. Don't let Dr.'s minimize you, be proactive and positive, I kno it is a fearful time for you but I am here. Sincerely GN
  • JESSCLARK30
    JESSCLARK30 Member Posts: 5

    wow
    I can't believe I shared my story and no one has even looked. I came here to share and for support. Anyone?

    looking for good info
    HI I JUST JOINED YEST AND READ UR STORY, IM SO SORRY U R HAVING TO GO THRU ALL THIS! HAVE THEY FOUND OUT WHATS GOING ON YET? DID YOUR SCANS REVEAL ANYTHING? I HAVE GOTTEN A CLEAN REPORT SINCE FEB10 AND THIS WEEK MY TG AND TGAB CAME BACK HIGH SHOULD I BE CONCERND?
  • veronica57
    veronica57 Member Posts: 98

    Hi All
    Well I had my surger on the 24th, and got home Monday. It took 3 1/2 hours, and they ended up taking 1/4 of my liver instead of the 1/2 that was mentioned at first, so that made me happy. The dr. looked at my liver extensively for any more tumors and didn't see any. However, he said the pathology showed about 11-12 spots compared to the 3 they had seen on the MRI. Mostly because one area had a bunch of tiny pinpoint tumors clumped together, so the original CT scan read it as one big tumor.

    It was by far the hardest surgery I've had to endure. Even though my TT was a 6 hr. surgery, besides feeling tired and not having much of a voice after, I felt pretty darn good. I know this was a major surgery, but the 2-3 days projected in the hospital was way off. I spent 5 days there, and was still very sore when I left. They did the surgery laporoscopically, with six small incisions and one larger one, so that's amazing in itself, but the dr. put the major incision where a childbirth one would be, so I pretty much feel like I just had a c-section. I felt pretty good 2 days out, probabaly because I was still numb and had pain meds, the the 3rd day was the worst. If anyone has ever had any kind of abdomenal surgery, the gas pain is the worst. I've always had problems with that in the past, and this was the worst ever. I would walk like they said, then the pain would start and I would feel short of breath like I couldn't breathe and I would panic.

    I finally turned the corner Sat. and by Sun. they let me have regular food, although hospital food is quite nasty.

    My trip to Johns Hopkins was a week before and was amazing. I felt special from the time I walked in the door until the time I left. The dr. spent an hour with me, going over my history in detail, and he concurred with the treatment I've been getting home so far. He basically told me that Hurthle Cell cancer is a rare beast, it doesn't act like other kinds of thyroid cancer, and thus is unpredictable. He said the reason why doctors say thryroid cancer is one of the better kinds to get is because it is usually very treatable, even with a reocurrence, and you can live with it, because it is slow growing and can be tracked well.

    He wants to see me in a year, and asked to have all my results and procedures forwarded to him so he can follow my case.

    Besides JHH being amazing, I was fortunate enough to meet Elaine, whom I met here on this board, and was there for her three month visit. My husband and I and she and her husband had an amazing dinner and chat. We are definitely sisters in this fight. We also saw each other the next day at the hospital.

    I'm hoping and praying this is the end of my reocurrences if not forever, for a very long time. After 2 in a three year span, I need a break. I need to be free of this for my sanity. I just wish I could wake up one day and say I'm free of this forever, but I know that will probably never happen. It could go into remission for years, which would be nice. I need to breathe.

    I thank you all for your kind words of support.

    Hugs, Patti

    BellsAngel169
    Wishing you the best.
  • csm2007
    csm2007 Member Posts: 25
    Niky said:

    Chin up: there is hope!
    Hi BellsAngel69 (and everyone out there!) Cancer is a royal pain in the butt and really scary, so I can sympathyze with you. I'll share my story some other time, but I'm also a Hurthle cell girl, with 2 surgeries (one for recurrence) and had EBR treatments (external beam radiation). I'll tell you all about it some other day.

    FOR THE MOMENT, I just want to let BellsAngel know that there have been significant developments in the treatment of cancer in the last couple of years. I don't know where you are located/treated, but there are many places that are conducting new clinical trials with a new set of drugs of the "angiogenesis inhibitor" category -- as a quick definition: angiogenesis is the process by which tumors grow: they need blood to make & feed cells, so they generate new veins and capillaries.

    There are a set of new drugs which were discovered for some other cancers but are being tried for thyroid cases with great success. They stop the growth of tumors by inhibiting this blood supply growth. There is also another category called "thyrosine kinase inhibitors". Many of these new treatments are in clinical trial phase but they are showing good results.

    You can read more about these new treatments at: http://www.cancer.org/docroot/cri/content/cri_2_4_6x_whats_new_in_thyroid_cancer_research_and_treatment_43.asp

    BUT, these are just some of the new things out there. I believe with all my heart that new therapies are on the way and non-traditional complementary therapies are also GREAT for slowing down or eliminating cancer while also fortifying the body.

    Besides medical follow ups, I'm also doing some of these additional things. For one, I've changed my diet radically to eliminate all processed sugar (no cookies, no ice cream, etc.) I do eat fruit, which has sugar. Also: eliminate all processed foods. All of this helps your body's own cancer-killing mechanisms.

    Sorry for the long post, just wanted to give you a perspective of hope. Not unwarranted hope -- there are solutions. Chin up and best wishes.

    I'll post my discoveries as I continue to research this field as I too need to keep the beast at bay!

    Love,

    Niky

    Looking for others/information
    Hi, I am new to the boards; I was diagnosed in December 2010 with Hurthle Cell Carcinoma. I just had my final surgery to remove the remaining thyroid on Jan 28th. I am looking for others that have Hurthle and it is difficult! I am just beginning my journey; I have so many more questions than answers. If you have available time, please send me a message on the boards or contact me at [email protected]. Thank you and best of luck to you!
  • csm2007
    csm2007 Member Posts: 25

    wow
    I can't believe I shared my story and no one has even looked. I came here to share and for support. Anyone?

    Looking for information/others
    Hi, I am new to the boards; I was diagnosed in December 2010 with Hurthle Cell Carcinoma. I just had my final surgery to remove the remaining thyroid on Jan 28th. I am looking for others that have Hurthle and it is difficult! I am just beginning my journey; I have so many more questions than answers. If you have available time, please send me a message on the boards or contact me at [email protected]. Thank you and best of luck to you!
  • imlovesem
    imlovesem Member Posts: 1
    hurthle cell cancer of the thyroid
    Hi everyone! In 2008 i had the left lobe of my thyroid removed. They told me it was called Hurthle cell cancer and that i should not worry bcuz thhyroid cancer was the best cancer to get. my endo at the time was furious bcuz she recommended i have a total thyroidectomy as to avoid reoccurence. After my surgery they told me she would no longer be my endo and my primary care doctor (who by the way is a nurse practitioner) would be prescribing my Levothyroxine. She had me on .50mcg of Levo and i still felt like crap! i never felt the same again. in 2009 i had surgey again to remove a large swollen lymph node near my left ear lobe. i still felt like a 90 yr old lady (i was 35 yrs old). after that they kept me on .50mcg of Levo and in 2010 (feb) i went to urgent care bcuz i could not take the pain in my body anymore and was tired all the time. i also had discomfort in my throat. i felt like my right side of my neck was swollen. got a FNA and they sais itt was malignant again but it was small so it was fine....
  • AmandaJo1983
    AmandaJo1983 Member Posts: 2
    imlovesem said:

    hurthle cell cancer of the thyroid
    Hi everyone! In 2008 i had the left lobe of my thyroid removed. They told me it was called Hurthle cell cancer and that i should not worry bcuz thhyroid cancer was the best cancer to get. my endo at the time was furious bcuz she recommended i have a total thyroidectomy as to avoid reoccurence. After my surgery they told me she would no longer be my endo and my primary care doctor (who by the way is a nurse practitioner) would be prescribing my Levothyroxine. She had me on .50mcg of Levo and i still felt like crap! i never felt the same again. in 2009 i had surgey again to remove a large swollen lymph node near my left ear lobe. i still felt like a 90 yr old lady (i was 35 yrs old). after that they kept me on .50mcg of Levo and in 2010 (feb) i went to urgent care bcuz i could not take the pain in my body anymore and was tired all the time. i also had discomfort in my throat. i felt like my right side of my neck was swollen. got a FNA and they sais itt was malignant again but it was small so it was fine....

    imlovesem re: hurthle cell cancer
    I was diagnosed with hurtle cell cancer in May 2012. Did RAI in July. My first labs were really good prior to RAI my TG level was 0.1. Now starts the journey of labs, ultrasounds, medication adjustments and frequent Dr visits. When my 2nd biopsy came back with hurthle cell neoplasm my endo gave me the outline of what would happen if was benign vs cancer. From what she told me if it was benign then she would see post-op in 2 months then my tsh levels would be monitired by my primary doc if it was cancer then endo would continue to follow me for labs, ultrasounds, scans and medication adjustments. You need to find a new endo. I really like my endo and is very proactive in my plan of care but if things change or I'm not getting the answers I need I will change doctors and since I live about 2 hours from the Mayo clinic I will go there, they have an excellent endo department. Hurthle cell cancer is a rare cancer and treatment for it is different in some ways from other throid cancers. So if your doctors is not proactive in your care and (you need to be proactive also) you need to find someone who is. Please let me know how everything is going.
    Amandajo
  • marie.r
    marie.r Member Posts: 2
    Hcc
    Dear bellsangels
    I am new to Hcc and just found your posting. I am thinking of you and wish you the very best. How are you doing?
    Thinking of you
  • raininspain
    raininspain Member Posts: 1
    my story of hurthles cell
    Hi all, well I discovered my thyroid cancer from watching Dr.Oz, I had been diagnosed with hypothyroidism in 2001, age 35, I had thought I was pregnant as i had milk coming out my boobs, had a pregnancy test which came back negative (luckily) but that i had a very low thyroid.
    They put me on synthroid which I was on for 5 years and felt like total crap, I did my research and found that people felt so much better on dessicated thyroid (erfa in Canada where I was). Anyway my family doctor refused to put me on it as he said it was old fashioned etc,( for the record he never sent me to a specialist at any time) I had read he would tell me this so i insisted and he made me write and sign that he didnt want to give it to me but I insisted.
    It was like night and day, within a few days I felt like myself again, I couldn't believe it, I started losing weight, I felt lively,, happy and needed alot less sleep.
    Anyway at the beginning of 2011 Dr Oz was doing the thyroid cancer test where you swallow water while looking in the mirror, my daughter and I were horrified to watch a lump the size of a golf ball in my throat,( no doctors ever bothered to feel my neck when I went for repeat prescriptions) I went straight to the walk in clinic near me and was sent to a specialist for a scan and biopsy. I was told its most likely cancer because of the size of it.
    On the 1st April 2011 I had a TT, the results didnt come back until June that it was hurthle cell, I did extensive research which showed RAI only has a very small chance of getting rid of hurthle cell but the high dose of radiation can cause other cancers and problems.
    I opted not to have it, going against my specialist, it hadn't spread to my lymph nodes and I really didn't want to poison my body. They said if I had it I would have to carry a card for 6 months as I would set off the radiation detectors at the airport, that was so scarey to me knowing that it would still be in my body for 6 months.
    I have had regular scans and blood tests and everything is fine so far.
    I just moved back to UK after living in Canada for 19 years, I was sent to Oxford to see the oncologist who again was trying to get me to do the RAI, he hadn't even heard of dessicated thyroid and wanted to prescribe me synthroid, I said no way as it hadn't worked, he said maybe my family dr could prescribe it which he did, he was amazing and did all the research into it. There are chemists in Uk that carry it so I just need to send my prescription there.
    Going into this I made sure I did all my research and wasn't going to be bullied into doing something I felt strongly about.
    I would tell all of you to do research into dessicated thyroid , there are so many stories of people who got their life back after going on it and off synthroid.
    My daughter was diagnosed with hypothyroidism at age 16, they had her on synthroid for 4 years,and kept upping her dose, she was depressed, tired all the time, constant headaches and just not herself. Two years ago I insisted she be put on dessicated thyroid and again, within days she felt 100% better, she's 22 now and going on it was the best thing ever.
    Dessicated thyroid has both T4 and T3 which is what we need. The doctors are taught at university that it is old fashioned and the doses are not all the same and it is no good but that's not true, they teach this because the pharmaceutical companies can't make money on it unlike synthroid.
    I'm not saying I won't ever have RAI because i might one day,especially after reading bells Angels experience,( I'm so glad you are feeling better ) I just think we all need to look into everything thoroughly because Doctors don't know everything thats out there.
  • KFox1
    KFox1 Member Posts: 1
    BellsAngel69

    I am just now starting this whole process. I read your story and just wanted you to know how muchit helped me. How much I can relate. ppl don’t seem to quite understand once the Pandora‘s box has been opened it Never truly closes. You put it best. I’m just now beginning to understand. Thanks for sharing. It’s nice to have ppl who do understand what you’re going trough. Still not sure how ppl just live their lives day to day never knowing about tomorrow never having definitive answers. 

  • webteach51
    webteach51 Member Posts: 10
    edited May 2019 #59
    Wondering how you are doing now

    Hi,

    I was just diagosed with Hurthle Cell Cancer in both lobes and just read your posts from 2010. I was wondering how you are and I am at the beginning of this horrible journey and hearing the news that this is so curable and treatable and I have my concerns.

    Hope to hear back that you are still a survivor!!!

    Sue

  • webteach51
    webteach51 Member Posts: 10
    imlovesem said:

    hurthle cell cancer of the thyroid
    Hi everyone! In 2008 i had the left lobe of my thyroid removed. They told me it was called Hurthle cell cancer and that i should not worry bcuz thhyroid cancer was the best cancer to get. my endo at the time was furious bcuz she recommended i have a total thyroidectomy as to avoid reoccurence. After my surgery they told me she would no longer be my endo and my primary care doctor (who by the way is a nurse practitioner) would be prescribing my Levothyroxine. She had me on .50mcg of Levo and i still felt like crap! i never felt the same again. in 2009 i had surgey again to remove a large swollen lymph node near my left ear lobe. i still felt like a 90 yr old lady (i was 35 yrs old). after that they kept me on .50mcg of Levo and in 2010 (feb) i went to urgent care bcuz i could not take the pain in my body anymore and was tired all the time. i also had discomfort in my throat. i felt like my right side of my neck was swollen. got a FNA and they sais itt was malignant again but it was small so it was fine....

    How are you doing?

    I am reaching out to people with Hurthle Cell Cancer as I was just diagnosed with multiple Hurthle Cell Cancerours turmors on both lobes. The doctors are painting a very rosy picture but reading all the literature does not indicate a cancer to make light of. I a new to this blog and wondering if you can briefly tell me how you are doing, any recurrences, what hospital did you go to for surgery/followup. I am thinking about flyilng to Sloan Kettering.

    Hope you are well and would appreciate any feedback since there seems to be so few of us out there with this disease.
    Best Regards,

    Sue

  • webteach51
    webteach51 Member Posts: 10

    imlovesem re: hurthle cell cancer
    I was diagnosed with hurtle cell cancer in May 2012. Did RAI in July. My first labs were really good prior to RAI my TG level was 0.1. Now starts the journey of labs, ultrasounds, medication adjustments and frequent Dr visits. When my 2nd biopsy came back with hurthle cell neoplasm my endo gave me the outline of what would happen if was benign vs cancer. From what she told me if it was benign then she would see post-op in 2 months then my tsh levels would be monitired by my primary doc if it was cancer then endo would continue to follow me for labs, ultrasounds, scans and medication adjustments. You need to find a new endo. I really like my endo and is very proactive in my plan of care but if things change or I'm not getting the answers I need I will change doctors and since I live about 2 hours from the Mayo clinic I will go there, they have an excellent endo department. Hurthle cell cancer is a rare cancer and treatment for it is different in some ways from other throid cancers. So if your doctors is not proactive in your care and (you need to be proactive also) you need to find someone who is. Please let me know how everything is going.
    Amandajo

    Wondering how you are doing now

    I am a newly diagnosed Hurthle Cell Cancer patient (both lobes) and awaiting surgery. I am reaching out to the very few of this with disease. I was wondering how you are doing, any recurrence, and are you at Mayo Clinic. I am at the point where I am scheduling surgery and willing to fly to Sloan Kettering where at least they heard of and have seen Hurthle Cell Ca. Any advice or infromation that you think I should know would be great. Pick the best surgeon for the first surgery is so important. I have changed my mind 5 times already.

    Best regards and hope you are well!!

    Sue