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  • 2X Warriors

    Vending machines Kiwi?! Very funny, but just in case....I will start saving up my pocket change now.
    Diagnosed Bilateral TC August 2008
    Left I/O August '08, Stage I Teratoma
    Right I/O November '08, Seminoma
    Surveillance- All Clear Nov '09
    Testosterone Cypionate TRT

  • #2
    Hey Team,

    A group of 8, and who said we were supposed to be rare! Hope 2009 is a fun one.

    Cheers

    Kiwi
    >>>>>>>>>
    TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
    TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

    Comment


    • #3
      Yup, I second that. 2008 really sucked, so I'm glad it's over. 2009 is a fresh start!
      Diagnosed Bilateral TC August 2008
      Left I/O August '08, Stage I Teratoma
      Right I/O November '08, Seminoma
      Surveillance- All Clear Nov '09
      Testosterone Cypionate TRT

      Comment


      • #4
        Hi guys, I am as sorry as you for being here. Thanks for being here anyway. This forum has already helped me clear some doubts before my second orchiectomy surgery two days ago - the first one was 10 years ago. I don't know yet what type of cancer or what type of treatment I will have to follow. My next doc's appointment is on Thursday and we'll go from there. I do have two silicon prosthetics. See you around!

        Comment


        • #5
          Hello and welcome to our little corner of the TC Forums! Sorry to add another member of course, but good to see you here just the same. Feel free to ask away with any questions, and feel free to send me a personal message too if you are more comfortable doing that instead.
          Diagnosed Bilateral TC August 2008
          Left I/O August '08, Stage I Teratoma
          Right I/O November '08, Seminoma
          Surveillance- All Clear Nov '09
          Testosterone Cypionate TRT

          Comment


          • #6
            Dear all,
            I'm a 38 year old ex-pat Australian living in Vietnam, have been for nearly 10 years.
            Quality medical care is hard to find here but I've been attending oncology and urology departments at the FV Hospital in Ho Chi Minh City (Saigon), considered the most advanced care facility in the country (as far as I know) and has a primarily French faculty.
            Firstly, I'd like to say that reading the posts on this forum has been very informative and somewhat comforting (though I'd never wish that anyone were ill). Despite the fantastic support of my wife and son, it is easy to feel a little isolated with this condition and it's good to know that one is not alone in the fight.
            I'll keep my story fairly general here pending a response - after which I can provide more detail. I'm not really sure which details are relevant at the moment but could really use some advice.
            Had a left inguinal orchidectomy 2 and a half years ago, diagnosed as a pure seminoma. Had noticed it growing but was slow to act and it was quite large when removed (think oval shaped cue ball!)
            Underwent post operative radiotherapy, deemed successful, abdomino-pelvis and chest CT report (AUG 07) showed everything normal and was told I didn't have much to worry about.
            Moving ahead to about a month ago, noticed my other testicle was growing though caught it earlier as I recognised the signs. Oncologist and Urologist informed me that I was in the unlucky 2-3% of cases that spread to the other testicle. Last week I underwent a right inguinal orchidectomy to remove the affected testis, two silicon prostheses were inserted during the procedure. Again diagnosed as pure seminoma. Am schedule to begin hormone replacement therapy next week, a monthly injection of 'Androtardyl' for life.
            Awaiting post-op CT scan next week but have been told that because I have already undergone radiotherapy that I shouldn't need any further treatment.
            I have post-op hematology report in my possesion which appears normal but, due to most of the medical reports being written in French (and Vietnamese interpreters), it's difficult for me to really get a handle on what's happening.
            The upshot of it all is that I'm not sure that I'm getting all the care that I need and open discussion on the issue is not forthcoming from my doctors. Quite frankly, I'm still in a bit of shock, maybe it's because I'm still a bit sore from the last op.....or am I just paranoid?
            Can anyone assist?

            Hope you are all doing well and look forward to hearing from you.
            Sincerely,
            Benny

            Comment


            • #7
              I guess I'm kind of a guest member. I lost both my Testes to Orchitis/Orchialgia. This is not very common stuff so the only resource I've found has been here.

              Comment


              • #8
                Hi Benny (and everyone else),

                With the stuff below I am not trying to dictate, suggest (maybe suggest a bit), or tell you what to do. It is my experience and I am just sharing. I am not a doctor and this should not be considered medical advice. You are welcome to discuss this with your doctor - please do!

                I am kinda hoping that someone responded to your concerns before. I'll share my experience anyway for everyone's sake. I have always been very involved in my treatment. We all should be. My first orchiectomy was in Mexico and the doctor was very good. The incision is almost invisible today. It was nicely done. The second orchiectomy was done in New York City (the incision is not as pretty as the first one - WTF really). If the second incision was anatomically perfect as the first one no one would even notice I have had two surgeries. I have two prosthetics - happy with them... yeah, the Mexican one looks better also; the new one sits too high up (c'mon balls are suppose to hang and not be close to the dick, right? Anyway, vanity aside. I found the second tumor by myself by looking at my previous blood work. My Primary Care Practitioner was in limbo - he still is. Having said that, the things I would suggest, keep a close eye on:

                Tumoral markers (Alphafetoprotein and Beta-HCG)
                Testosterone levels
                Blood work

                Some very specific blood analysis that needs to be done once you start testosterone therapy - how thick your blood is, estradiol levels, PSA (prostate antigen), etc - ask your doctor about these analysis. The blood report you got should have reference values so you know how you measure up. My hospital here in New York (Memorial Sloan Kettering Cancer Center - MSKCC) has made available to patients online lab results. These results are linked to this other website with an explanation of each analysis, example:

                http://labtestsonline.org/understand...rone/test.html

                This is a link to the testicular cancer page:
                http://labtestsonline.org/understand...ticular-3.html

                In terms of care, it sounds that you are getting everything you need, considering that all the things that need to be monitored are being monitored (as the lab analysis I mentioned above). If you got radiotherapy the first time (like me) it is not advisable to do it a second time in life. I didn't get it a second time. I am under surveillance only right now. If cancer shows up again it will most likely mean surgery and chemo or either one. There is nothing we can do other than hope for the best and keep a close eye on our blood work - don't leave it to the doctor alone.

                Make sure you always get a copy of your lab results - blood work, x-rays, MRI, CT scans, CAT scans, you name it.
                You never know when are you going to need them again in case you move to a different city or country. Your medical history at this point in life can save your life in the future - keep a copy with you!

                The one thing I track like a maniac now is my testosterone level. I am using the gel form (Androgel). It works pretty well and I feel great. I am lucky enough that it is covered by my insurance. My urologist was taking care of my testosterone - but I was also monitoring it myself... I noticed that the levels were off and the urologist didn't even notice it - hello, limbo again. I brought it up. He increased the dose. I decided to talk to other doctors. I met with a male sex expert (urologist and specialist in erectile dysfunction - although I never had that problem) but he also deals with testosterone therapy he is monitoring me now. With the new dose my testosterone seems to be fine but on the high level. I met with an endocrinologist and talked to another one. Both urologists (from MSKCC) and three endocrinologists (two from Weill Cornell Medical Center, and another one graduated from there but currently at George Washington Univ in Washington, DC) have suggested to continue using the gel, continue the monthly cancer monitoring, and keep an eye on other testosterone related risks every three months at least.

                The cancer monitoring recipe goes like this:

                monthly tumoral markers alternated with xrays and MRI or CT scans every month for at least three years; every three months for the following two years, every six months the next year, and every year for life after the 5th year.

                Having talked with other TC patients from the same hospital we all get the same regime. In contrast to other cancers, testicular cancer patients should be monitored for life. Some other cancer patients can be considered cancer free and free of surveillance after 10 years. TC is NOT THE CASE.

                I am sorry you are having such a hard time finding the right care. I hope this overview helps you and anyone else in similar conditions. Good luck!!

                Best, Ariel

                Comment


                • #9
                  Hey, Ariel. Sounds like you've become well informed about TC and TRT. Don't we wish we didn't have to acquire our expertise. What leapt out at me in your post is the frequency of CT scans you recommend. I assume you're under surveillance and didn't receive chemo or RT. Once a month for 3 yrs.sure sounds like a lot. Do you have a reference for the protocol that recommends this?

                  Thanks.
                  Groundhog

                  Comment


                  • #10
                    Hey there Groundhog,
                    Just to be clear, I am not recommending any treatment. I am just sharing my experience. Thanks for bringing the CT scans thing up. My bad. I am getting the CT scans every three months. It is interesting though that I was being required by the doctor to do chest, abdomen, and pelvis. Then I found this article online:

                    http://www.newsweek.com/id/234514

                    and I also found the medical abstract version of it - I can't find the link now. I showed it to my doctor and my next scheduled CT scan was only for chest. No questions asked... So it seems that CT scans should be more closely monitored...

                    - Ariel

                    Comment


                    • #11
                      Hi Team, you can add your details to the “Find A Warrior” thread, copy and pasted the information into your reply and add your details.

                      http://www.tc-cancer.com/forum/showthread.php?t=8340
                      >>>>>>>>>
                      TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
                      TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

                      Comment


                      • #12
                        Hi...looking for help for my son's friend 22 years of age. Great kid!!! Has been battling TC since his teens. They want to do an experimental drug along with radiation. The radiation alone is not working. The problem is since it is an experimental drug our OHIP will not cover it. There must be some something out there that will help him. He has no parental support. I have offered him to come and stay with us through his treatment so he doesn't have to pay rent. He is trying his best to work but he sounded weak on the phone and hasn't even started the new drug yet. Can anyone assist me to get financial aid to pay for the experimental drug.

                        Comment


                        • #13
                          Hello all, I am posting here bc it seems to fit the best. I am the wife of a man who was diagnosed with TC almost 2 years ago and chose not to have treatment. I am not sure what type or how advanced it is. I only know bc he told me 5 days ago for the first time. He is embarrassed about it and does not want me telling family or friends. He is in constant pain in low back, right 5th & 6th rib area, lower groin and abdomen (stabbing pain that stops him in his tracks). He is on Methadone and has been using marijuana to keep from throwing up. He has lost a massive amount of weight. I am here bc I need someone to talk to.

                          Comment


                          • #14
                            Hi group. I'm the wife of a man who was diagnosed with left TC in May 2010 and right TC in November 2010. He had left/right orchiectomy and just finished 3 x BEP. It's been a very rough road, but we are managing to get through this mess. It's helpful to see others out there that have had a similar experience. Currently, we are struggling with a bit of anxiety about his future and getting him strong and healthy again.
                            Wife of TC x 2 Warrior.

                            05/2010 Left TC diagnosis; 95% seminoma, 5% Embryonal - Treated w left orchiectomy and surveillance.

                            11/2010 Right TC diagnosis; 90% Embryonal, 10% seminoma, 3 enlarged lymph nodes Treated w right orchiectomy and 3 x BEP.

                            3 x BEP completed February 2011.

                            Currently undergoing surveillance.

                            Comment


                            • #15
                              Hi all, I lost my second last year and still adjusting. I am relieved to find the forum.

                              >>>>>>>>>
                              TC1: May 2000 / Right orchiectomy / seminoma stage 1 / Radiation
                              TC2: June 2010 / Left orchiectomy / seminoma stage 1 / 1 Prostheses / Androgel 2X 5G packets
                              David S.

                              [TC1: May 2000 (age 25) / Right orchiectomy / seminoma stage 1 / Radiation
                              TC2: June 2010 (age 36) / Left orchiectomy / seminoma stage 1 / 1 Prostheses / Androgel 2X 5G packets]

                              Comment

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