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30 y/o with 2 lumps on left testicle, testicle has also shrunk...

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  • #16
    PIXEL GENIUS~ Wishing you the best on Thursday. Pain as you found out can INDEED mean TC (my son had extreme pain). BTW, my teenage son was not even offered a prosthetic, and would have declined personaly to have one.
    Son Grant
    dx 12/21/16 at age 17

    BEP x3
    Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
    2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
    Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

    Comment


    • #17
      Hey again guys, and thanks for the replies. As mentioned, I've also been chatting about this on the Macmillan forums, great to have so much support around.

      I'm disappointed with my urologist as he didn't seem to understand or respect how this will psychologically affect myself, my body image and self esteem. I advised him that I've recently been through some therapy and have anxiety issues already, but referred to my issue as 'vanity' and that I need to face reality. I'm gay too, which really doesn't help as there is pressure to look good 'down there', and I'm also having some issues with my relationship so this really sucks.

      The other thing that I'm unhappy with is his refusal to discuss a prosthesis. As soon as I mentioned it, he quickly said I already told you that I will NOT place a prosthetic testicle in at time of surgery, its a possibility at a later date but you need to focus on removing the testicle right now. When I tried to ask if it was something I could consider at a later date to reassure myself, he just plain refused to discuss it.

      More importantly though, the testicle itself... So he confirmed a few things to me which I was confused about. Basically there's one mass, not two. The mass is at the top of the testicle and he said it appears as a tumour, and therefore is considering it to be a potential tumour, and needs to be removed. The two palpable lumps that I had reported were actually nothing to do with this, and he said they were just cysts, nothing to worry about. He said its very much likely a tumour, and therefore very much likely to be cancerous. Although he could confirm neither at this point, and that I would need to have the orchiectomy to discover what it actually is. He explained that two of my tumour marker levels were higher than normal and typically report cancer, but not 100%, although rare if it isn't. He also said that the CT scan showed no signs of spreading anywhere around my abdomen or chest.

      So it's definitely coming out, and it looks like I can probably assume this is cancer, and if it isn't then I'd be one of the very rare few. I have a pre assessment booked in tomorrow and could be looking at surgery either next week or week after. I wasn't given any written diagnosis, nor figures or anything, so have nothing like that to offer which is a shame. Feeling pretty rubbish after today but I'll do whatever is needed...
      Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

      Follow me and my journey: https://www.instagram.com/daleowendesign/

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      • #18
        I would find another doc. There is no need to put up wiith that attitude. The risk of infection is quite small, lots of guys on this forum have had them put in without problems.Your doc clearly has a bias against them, I wouldn't stay with him.

        Dave
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

        Comment


        • #19
          I agree, this is just bad attitude. My urologist offered to put in prosthetic, it should be your choice, no his. Keep in mind you'll most likely be seeing your urologist for checkups for the next X years if it's TC and you don't want to be dealing with an asshole.
          July 2016 - Left I/O
          December 2016 - BEPx3
          All clear for 1 year!

          My Testicular Cancer Support Kit
          First Oncologist Visit Checklist
          3 Things I Wish I Knew Before I Started Chemo
          3 Reasons Why People Disappear From Your Life During Cancer
          Simplify Cancer Podcast

          Comment


          • #20
            Thanks guys for the responses, I appreciate it.

            I complained to my pre assessment nurse about my concerns of the urologists attitude and disregard to prosthesis. A few hours later I had a phone call from the urologist staying that I had made a complaint and wanted to know why. I explained my reasons respectfully, but unfortunately his attitude remained the same. It was an awkward conversation and at the end of the call he abruptly interrupted me and said ĎI will insert the prosthesis for you!í Angrily suggesting that it goes against his practice, but to make a decision ASAP and that was the end of the call. Well I appreciate him changing his mind, but I certainly donít want a urologist adding a prosthesis out of spite! Iím now actually worried that he will botch my procedure maliciously!

            Iím going to contact my GP and any relevant organisations to find out how I can locate an alternative local urologist who works within the UKís NHS for a second opinion and to find someone more respectful of my concerns. I wish I could afford to go private but I canít.

            I was wondering if anyone was aware of any figures or research which suggests the incidence rate of issues with testicular prosthetics? Or at least how often do problems occur with a prosthesis, particularly when inserted at time of orchiectomy?
            Last edited by PixelGenius; 10-01-17, 07:51 PM.
            Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

            Follow me and my journey: https://www.instagram.com/daleowendesign/

            Comment


            • #21
              Just found some interesting recent research/studies which discovered that insertion of prosthesis at time it orchiectomy creates no more risk than insertion at a later date or even without orchiectomy. They also suggest low risk in general, but Iím still trying to find out a bit more about the actual chances of a problem occurring with a prosthesis...
              Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

              Follow me and my journey: https://www.instagram.com/daleowendesign/

              Comment


              • #22
                Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

                Follow me and my journey: https://www.instagram.com/daleowendesign/

                Comment


                • #23
                  Originally posted by PixelGenius View Post
                  Just found some interesting recent research/studies which discovered that insertion of prosthesis at time it orchiectomy creates no more risk than insertion at a later date or even without orchiectomy. They also suggest low risk in general, but I’m still trying to find out a bit more about the actual chances of a problem occurring with a prosthesis...
                  My urologist gave me the option and nonchalantly said he could just "slip it in" during the orchie, lol. So I really don't think it should be a big deal.
                  6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                  6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                  7/7/15: bHCG 56, AFP 42, LDH 322
                  7/13/15 - 9/18/15: 4xEP
                  10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                  10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                  4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                  4/20/16: RPLND @ IU - teratoma only!
                  9/27/2018 all clears up to this date!

                  Comment


                  • #24
                    While not scientific by any means, my recollections would be that close to 95% of the guys wanting a fake one get it done at the time of the I/O. I cannot recall even one infection reported on this board. A few guys report being unhappy with the way they feel ( some just don't feel "right", others report discomfort), but most seem happy with them.

                    Don't overthink this, you feel you want one, find a doc who is agreeable. I personally would be running away from your current doc as fast as I can.

                    Dave
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment


                    • #25
                      Well here's an update. I have my surgery booked in for next Thursday (12th October), with the same urologist. I contacted my GP to complain and ask for advice, I also spoke to a Macmillan support nurse. Both agreed that I should go ahead and have the surgery with the same urologist and accept his agreement to add the prosthesis, despite being reluctant. I can confirm that this has been added to the surgery schedule now too. My GP was very understanding and stated that he here's similar stories happen in the UK where surgeons and consultants, such as urologists, fall out with patients because of their individual skills and beliefs, he said their word almost seems like law, but I am in every right to express my needs in a situation like this, and the urologist should be more understanding, but also should be able to fulfil my needs, especially where in this case the insertion of a prosthesis is pretty much standard procedure. He said that honestly if it was him, he would definitely want the prosthesis, but not to worry about the urologist's defence and argumentative attitude since he's agreed to do it, and despite not wanting to, he most certainly will do a professional job. He let me know that the urologist is well known and an expert in his field, but just seems to have his own view when it comes to a prosthesis.

                      The other important point was time, which just isn't on my side in this case. With the NHS in UK, wait times for referrals are horrendous. He advised that if I wanted to seek an alternative urologist within the NHS, it will take time to find one, and I may be required to book in tests all over again, depending on the urologist's requirements, wait for appointment slots and then ultimately significantly delay surgery.

                      Unfortunately, one of the lumps which I thought was one of the 'cysts' has grown about 4 x times in size in the past week, and no longer feels like a cyst. It feels like a hard ridge, at the point where the 'tumour' was found, so I am assuming this is the tumour itself growing. I have reported this to the urologist's secretary. So with this happening and the lack of time available within NHS, it looks like finding another urologist just isn't a viable option right now. So I'm going ahead with surgery with the current urologist, with his 'acceptance' to insert a prosthesis. I'll admit, I'm worried he's not going to do a great job, and also really worried about infection now. But as my GP stated, he will definitely do a professional job and I shouldn't worry about this. And also given previous research, and Davepet, your findings too, it seems that infection shouldn't be a worry either. So I really hope this goes well!

                      It's a shame I will have to tolerate the urologist himself for the foreseeable future. Ideally I would like to find another urologist but I can't afford to go private, and it looks like time isn't in my hands. I will try my best to get along with the guy, but I will continue to stand my ground where needed.
                      Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

                      Follow me and my journey: https://www.instagram.com/daleowendesign/

                      Comment


                      • #26
                        Yes, stand your ground. Sorry you have deal with wait time. Frustrating. Keep us updated.
                        Son Grant
                        dx 12/21/16 at age 17

                        BEP x3
                        Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                        2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                        Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                        Comment


                        • #27
                          Well, the most important thing here is to get the testicle out ASAP. While getting the fake one put in at the same time is ideal, when considering the wait times you face, maybe seek another uro after the I/O? I'm pretty sure I wouldn't want *that* guy to do it after having his hand forced, just MHO.

                          Dave
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #28
                            Hey everyone

                            Just wanted to post an update. So I had my surgery 2 weeks ago today. It went well, no problems, prosthesis also inserted. I've been in a lot of pain which is slowly subsiding. I can't understand how some people can go to work so quickly after surgery, but I guess everyone's bodies are different! The pain has been internal between the wound and my testicles, which I guess is where I was chopped up inside! Lots of others I've noticed have said they felt numbness, sometimes for a while afterwards. But I've not felt even the slightest numbness, even the day of the op.

                            My only quibbles at the moment are mainly with the prosthetic testicle. It's attached too high. I don't know why it was placed so high. When fully 'hanging', my real testicle hangs so far below the prosthesis that it almost appears as if they are literally sitting on top of each other. The prosthesis is also very large. I expected it to be small or larger, but not this large! It's double the size of my real one. I've been advised its saline. It's also spheric rather than oval. I was also advised to give it time to 'settle' which will allow it to move lower, however I can't see it 'settling' any more than it is now.

                            Another nuisance is the stitch where the prosthesis is attached to my scrotum. its very noticeable and pretty sharp! It's so sharp that it feels like it could break my skin. I've not really noticed anyone discuss this before, has anyone had this same experience with a prosthesis?

                            The wound itself is healing well, although I have a lot of ingrown hairs around it now after shaving the area which I'm not sure what to do with! I can't scrub the area as the wound is still sensitive and healing. Any advice with this?

                            Anyway, onto the more important stuff. My case is being taken over by an 'urology oncology nurse specialist' who has been extremely helpful. She chatted to me for a while about everything and wish I had the opportunity to chat to someone so understanding before but never mind. She advised me that my tumour marker levels in my blood were still high after surgery so I'm having my bloods checked every week to check to see if they are coming down. I'm awaiting a phone call from her any day now to advise me of any further findings, and of course the biopsy results as I still don't have these. She said it could take up to 3 weeks, although has advised it's 99% cancer.

                            So more waiting again. Thankfully I've been given government sick pay until mid November, but want to get back to work as soon as I can.
                            Last edited by PixelGenius; 10-26-17, 12:30 PM.
                            Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

                            Follow me and my journey: https://www.instagram.com/daleowendesign/

                            Comment


                            • #29
                              I’ím glad things have gone ‘okay’. Based on my experience, it will settle lower - give it a gentle pull down each time you shower and hold it there.

                              Yes it’ís a different shape and harder. Sometimes it gets in the way. When hanging it will eventually look absolutely fine.

                              And your natural nut will grow! At least mine did as it takes up the slack.

                              It took me months for my op pain to subside and even today - one year on this week - my scar is painful. Cycling and running in the winter weather is interesting as my ball tucks away and other hangs out there! My prosthetic testicle can take time to warm up afterwards.

                              For the moment, don’t concern yourself too much and concentrate on the tumour markers and histology to follow.

                              Best wishes
                              S.

                              Comment


                              • #30
                                Thank you for your reply.

                                Today I have another update. I had a call from the nurse specialist who advised me that my histology results are in and they can confirm itís a nonseminoma. Although the CT scan showed no signs of spreading, theyíve confirmed that there has been invasion into nearby blood vessels.

                                Treatment is undecided at this point as my tumour marker levels are still high in my blood after 2 recurrent post-surgery blood tests. I had another one today, but have been asked to repeat a blood test again each week for 2 consecutive weeks to see if the levels Ďnormaliseí. I was advised that this can sometimes take a few weeks at times or may not at all. If it fails to decrease, she said that itís very likely Iíll need some form of chemotherapy. However she canít say until we wait another 2 weeks of blood tests.

                                So although I know that I had a nonseminoma, which confirms cancer, Iím having to wait longer again. Honestly, Iím not really sure what it means for me if there has been invasion to blood vessels. I donít know how this will affect my treatment options and my health? I should have asked but it was a lot to take in at the time.

                                Iíll be getting another call on Wednesday to advise of the blood test results from today. Really donít know what to think... :/
                                Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

                                Follow me and my journey: https://www.instagram.com/daleowendesign/

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