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Thread: 4 years in remission, now I have low T and a new cancer...

  1. #1
    Join Date
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    New Jersey
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    4 years in remission, now I have low T and a new cancer...

    Hello everyone. I first joined up here 4 years ago just before I was diagnosed with TC (you can read about my experience here: http://www.tc-cancer.com/forum/showthread.php?t=7673).

    Anyway, I was in remission up until a few months ago when I started having some issues again. Daily headaches, chest pains and fatigue like you wouldn't believe. Doctor ordered a full barrage of blood tests and did a full body U/S. My testosterone came in low (170), my iron and vitamin D levels were really low and he found a tumor in my neck. This time around it's thyroid cancer, but I think the fatigue is due to the testosterone issue related to the TC ordeal.

    I'm going for a pre-op consultation on Tuesday to get a surgery date, and I'm worried that with the fatigue from the testosterone issue along with the fatigue that will be caused by all the harmonal changes after my thyroid is removed will just leave me zombified. Doc doesn't want to treat the testosterone until this is taken care of first.

    Has anyone else with low T had to deal with multiple medical issues similar to this simultaneously? I'm wondering how complicated it'll be to treat low T and out of whack harmones at the same time, and I'm worried they'll never find a balance that works....

  2. #2
    Join Date
    Oct 2007
    Location
    Micro-State of Rhode Island, USA
    Age
    60
    Posts
    2,462
    I hate this %&#@*! disease and I'm so sorry you have to deal with it again. I don't have experience with either issue but wanted to let you know you are in our thoughts and prayers for successful surgery and getting back to normalcy.
    "Statistics are human beings with the tears wiped off" - Paul Brodeur
    Diagnosis: 05Sept07 Right I/O: 13Sept07; Pure Seminoma; Surveillance only per NCCN: All Clear February2013 (Chest Xray, Markers); Next check August2013 (CT Scans, Markers)

  3. #3
    Join Date
    May 2011
    Location
    Italy
    Posts
    575
    I'm sorry for it man dealing with cancer twice is not fair. But as far as I know thyroid cancer has a stellar cure rate, even more than TC if I'm not wrong. Stay strong !
    - early Apr/11: something is "wrong" in my righty
    - 16/Apr/11: ultrasound find a mass in it
    - 27/Apr/11: right I/O
    - 29/Apr/11: stadiation CT scan shows "all clear"
    - May/11: pathology: 1 cm Seminoma (90% necrotic), no RT/LV invasion
    - Surveillance....
    - March/13: relapse - para aortic node 1.7 cm, waiting for treatment...

  4. #4
    Join Date
    Aug 2010
    Location
    Czech Republic
    Age
    33
    Posts
    157
    I am so sorry for your situation... I know perfectly how you feel just now. My hubby had TC twice (you see my signature) and last year he was diagnosed with cancerous polyp in colon (it pick up on his regular PET/CT), so early colon cancer was stopped by simple polypectomy. He is under surveillance (PET and colonoscopy) and is fine until today (blood work at Thursday, so we are nervous again) but I hope that you will fine too. I wish the best for you... My prayers are with you!!
    Hubby Fany (born 1961):
    TC1: 2005, pure seminoma, stage 1, left I/0, radiation
    TC2: 2010, seminoma, frozen biopsy, right I/0 2xBEP (finished 25.7.2010), HRT Nebido


    HRT Nebido (long term injectable) form 15th of June).
    9-10-2010: blood test: clear
    10-29-2010: PET CT - clear
    11-29-2010: blood test: one marker slightly elevated
    02-25-2011: blood test: all clear!!!!!!!!!!!!
    05-02-2011: PET CT - clear
    07-28-2011 blood test - clear
    09-22-2011CT scan - clear

  5. #5
    Join Date
    Apr 2008
    Location
    New Jersey
    Posts
    43
    Thank you all. I know I'll be alright, I'm just tired of being tired all of the time!

    Quote Originally Posted by Piskot View Post
    I am so sorry for your situation... I know perfectly how you feel just now. My hubby had TC twice (you see my signature) and last year he was diagnosed with cancerous polyp in colon (it pick up on his regular PET/CT), so early colon cancer was stopped by simple polypectomy. He is under surveillance (PET and colonoscopy) and is fine until today (blood work at Thursday, so we are nervous again) but I hope that you will fine too. I wish the best for you... My prayers are with you!!
    Piskot, sorry your hubby had to go through all of that and I hope the blood work comes back ok. Did he have radiation treatment the first time for his TC? I'm curious because that's what I did and it's possible it may have ended up being the underlying cause for my thyroid cancer.

  6. #6
    Join Date
    Dec 2006
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    Gaithersburg, MD
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    Quote Originally Posted by MJR View Post
    I'm curious because [radiation treatment is] what I did and it's possible it may have ended up being the underlying cause for my thyroid cancer.
    It is very unlikely that adjuvant XRT (such as what I think you received) is to blame for the thyroid cancer.
    "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
    11.22.06 -Dx the day before Thanksgiving
    12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! Final follow-up: 07/2014.
    Please support my fundraising efforts for the 2013 Austin LIVESTRONG Half Marathon!


  7. #7
    Join Date
    Aug 2010
    Location
    Czech Republic
    Age
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    Hi MJR,
    yes, my hubby had radiotherapy for his first seminoma. I have heard that this therapy may cause colon cancer but no in so short time (5 years for my husband, but in fact his polyp was not cancer yet, only polyp with cancerous cells). My husband´s oncologist said that radiotherapy as well as chemo may cause some other cancers in future but only in very small percentage... Someone more experienced can offer better opinion than mine - I am only amateur....

    Market
    Hubby Fany (born 1961):
    TC1: 2005, pure seminoma, stage 1, left I/0, radiation
    TC2: 2010, seminoma, frozen biopsy, right I/0 2xBEP (finished 25.7.2010), HRT Nebido


    HRT Nebido (long term injectable) form 15th of June).
    9-10-2010: blood test: clear
    10-29-2010: PET CT - clear
    11-29-2010: blood test: one marker slightly elevated
    02-25-2011: blood test: all clear!!!!!!!!!!!!
    05-02-2011: PET CT - clear
    07-28-2011 blood test - clear
    09-22-2011CT scan - clear

  8. #8
    Join Date
    Jul 2008
    Location
    Huntington Beach, California
    Age
    45
    Posts
    1,233
    Hi Mike,

    I am so sorry you now have to deal with this. I hate cancer!!!

    I have thyroid cancer too. And as you can see from my signature, I know a couple of things about TC as well.

    You may be tired from your thryoid as it's kind of like the computer chip in your car. It's responsible for making alot of things run smoothly. Once you have your surgery they may have you take radioactive iodine to kill any left over thyroid/cancer cells. (If this is the case then I can help direct you with lots of patient pointers). You may also have to go on a low iodine diet prior to the radioactive iodine. After all of this they will put you on thyroid replacement and in a couple of weeks you should be feeling much better.

    Thyroid does have a high cure rate but it's still crappy to have.

    I'm here if you ever want to chat. I'll pm you my email address. I'm not on here often but Fed gave me a heads up you were dealing with this.

    ~Mary Ann
    CaregiverSon Josh 23yr Dx 3/5/08 IIIC NonSeminoma affected lung, kidney liver back & tumor/clots in vena cava & celiac artery 3/7/08 L I/O 3/30/08 PostOp surgery 4XEP (VP16 & Cisplatin) 3/12-5/25 LDH > 5000 & AFP 145 (3/5 pre-op) LDH 563 & AFP 4 (5/26 after 4Xchemo) off blood thinners 3/18/09 Surveillance per Dr E 8/4/08 *1/2012 ALL CLEAR!

    Self 1/29/09 dx thyroid cancer metastasized to right lung 2/10 thyroid removd 4/17 rx RA131 5/11/10 &7/16/10. 1/12survellience

  9. #9
    Join Date
    Apr 2008
    Location
    New Jersey
    Posts
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    Thanks Mary Ann. The surgery is about 2 1/2 weeks away and I'm a little anxious. I just want to get it over with and feel "normal" again.

  10. #10
    Join Date
    May 2012
    Location
    Three blocks from the Atlantic Ocean
    Posts
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    Hi Mike,
    I am so sorry you have to go through thyroid cancer now. I'm not sure if I can be of any help, but my son has very low testosterone due to Klinefelter's Sydrome and yes, low testosterone can make you tired. He hates the Androgel, patch, and shots for testosterone, so forgoes those. He also has hypothyroidism. He takes Synthroid, and that helps a little with the fatigue, but not much. He does get irritable if he takes his Synthroid too late in the morning. He has other health issues but he finds that his one mug of coffee in the morning helps his tiredness a little.
    ~Anne~

    Blog About Life And Writing

    Son, Matt, age 27
    Dx'd stage 2b (June 2012)
    Left rad orchiectomy,
    Seminoma, 4.2 cm
    LVI, 4 lymph node involvement
    Finished radiation (25 sessions)
    PET scan--Aug.'12
    Follow up w/ dr.--Sept.'12
    Follow up w/dr.--Dec.
    PET scan--Feb. 2013
    Follow up w/ dr.--Feb. 2013

  11. #11
    Join Date
    Oct 2010
    Location
    UK
    Posts
    108
    I'm sorry you have to flight/battle this disease again, hope you recover quickly so you can get your life back. My mum had breast cancer twice within three years and then three years later I was diagnosed with TC so I can relate to your situation.

    All the best!!!
    Malignant teratoma undifferentiated (MTU), teratoma differentiated (TD); and classical seminoma.

    Size of testis: 45 x 25 x 25 mm
    Spermatic cord: 80 mm in length
    Location of tumour: Testicular parenchyma
    Size of tumour: 25 mm
    Surface of tumour: irregular and nodular

    ‎"Yesterday is history. Tomorrow is a mystery. Today is a gift. That’s why we call it the present!
    "

  12. #12
    Join Date
    Jul 2008
    Location
    Huntington Beach, California
    Age
    45
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    1,233
    Hi Mike,

    I'm still not back to 'normal'...not sure if I ever will be after my son's cancer and then mine.

    Are you on a low iodine diet? I can help you with that. The surgery itself is not hard.


    I private messaged you my email address.


    Take care.
    Mary Ann
    CaregiverSon Josh 23yr Dx 3/5/08 IIIC NonSeminoma affected lung, kidney liver back & tumor/clots in vena cava & celiac artery 3/7/08 L I/O 3/30/08 PostOp surgery 4XEP (VP16 & Cisplatin) 3/12-5/25 LDH > 5000 & AFP 145 (3/5 pre-op) LDH 563 & AFP 4 (5/26 after 4Xchemo) off blood thinners 3/18/09 Surveillance per Dr E 8/4/08 *1/2012 ALL CLEAR!

    Self 1/29/09 dx thyroid cancer metastasized to right lung 2/10 thyroid removd 4/17 rx RA131 5/11/10 &7/16/10. 1/12survellience

  13. #13
    Join Date
    Apr 2008
    Location
    New Jersey
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    Quote Originally Posted by stormie View Post
    Hi Mike,
    I am so sorry you have to go through thyroid cancer now. I'm not sure if I can be of any help, but my son has very low testosterone due to Klinefelter's Sydrome and yes, low testosterone can make you tired. He hates the Androgel, patch, and shots for testosterone, so forgoes those. He also has hypothyroidism. He takes Synthroid, and that helps a little with the fatigue, but not much. He does get irritable if he takes his Synthroid too late in the morning. He has other health issues but he finds that his one mug of coffee in the morning helps his tiredness a little.
    Hi Stormie. Was your son taking both the low T treatments and Synthroid at the same time at one point before he stopped the low T? I'm curious to how he might have felt then. Although the cancer itself is asymptomatic, it's effect on the thyroid has been giving me symptoms of hypothyroidism as well, and I know it'll be full fledged once my thyroid comes out. I'll probably be on Synthroid also.

    I started taking Ultra Iron 65 and Vitamin D-3 5000 supplements about a week and a half ago, since those levels were low in my last blood test (also take vitamin B-12 1500 which is essential for metabolism and energy production). Surprisingly, it has helped quite a bit with my fatigue (and I'm not an all natural kind of guy...give me the strong stuff). Although I still don't feel as energetic as I did before, I'm not sleeping 12+ hours at any given opportunity like I was before the supplements. I actually feel a little refreshed after 8 hours of sleep now even though I'm not taking anything for the low T or hypothyroidism at the moment. I'm guessing there might have been an additional issue of iron anemia adding considerably to my fatigue. Has your son had those levels checked recently? Might be worth a look.
    Last edited by MJR; 07-04-12 at 10:49 AM.

  14. #14
    Join Date
    Apr 2008
    Location
    New Jersey
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    Quote Originally Posted by Osaka_23 View Post
    I'm sorry you have to flight/battle this disease again, hope you recover quickly so you can get your life back. My mum had breast cancer twice within three years and then three years later I was diagnosed with TC so I can relate to your situation.

    All the best!!!
    Thanks, Osaka. I just hope this is the last of it for all of us.

  15. #15
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    Apr 2008
    Location
    New Jersey
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    Quote Originally Posted by mahalomom View Post
    Hi Mike,

    I'm still not back to 'normal'...not sure if I ever will be after my son's cancer and then mine.

    Are you on a low iodine diet? I can help you with that. The surgery itself is not hard.


    I private messaged you my email address.


    Take care.
    Mary Ann
    They don't have me on one right now since they're not 100% certain RAI is necessary, but the odds are pretty good it'll come to that. They said RAI will probably be pushed out further than usual (8 weeks rather than 6) because I recently had CT scans with iodine injections, so they'll need to allow more time for it to get out of my system. So, it might be a while before they put me on the diet. I'll certainly have some questions for you when the time comes. I have your email. Thank you!

  16. #16
    I don't have a great deal of advice I can give on low test and thyroid problems, but you should know that for any low or heightened hormone or chemical we rely on - the docs have medical options for you to solve your problems. If your test/thyroid function is too low - they'll give you HRT or whatever it takes, you won't be left to feel awful.

  17. #17
    Join Date
    May 2012
    Location
    Three blocks from the Atlantic Ocean
    Posts
    25
    Quote Originally Posted by MJR View Post
    Hi Stormie. Was your son taking both the low T treatments and Synthroid at the same time at one point before he stopped the low T? I'm curious to how he might have felt then. Although the cancer itself is asymptomatic, it's effect on the thyroid has been giving me symptoms of hypothyroidism as well, and I know it'll be full fledged once my thyroid comes out. I'll probably be on Synthroid also. ....

    Has your son had those levels checked recently? Might be worth a look.
    Sorry I just saw this post! Matt started taking the testosterone supplements (shot, then Androgel, then Androderm) back when he was about 15 when he was dx'd with XXY chromosome (Klinefelter's Syndrome) and continued treatment for a few years. He stopped taking any testosterone supplements because he just didn't like the way they made him feel. Hypothyroidism was dx'd only last year when he was 26 and put on Synthroid. He gets his thyroid levels checked every two to three months and they've remained normal.
    ~Anne~

    Blog About Life And Writing

    Son, Matt, age 27
    Dx'd stage 2b (June 2012)
    Left rad orchiectomy,
    Seminoma, 4.2 cm
    LVI, 4 lymph node involvement
    Finished radiation (25 sessions)
    PET scan--Aug.'12
    Follow up w/ dr.--Sept.'12
    Follow up w/dr.--Dec.
    PET scan--Feb. 2013
    Follow up w/ dr.--Feb. 2013

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