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  • Never Again An Abdominal Cut

    I was diagnosed six months ago with a painless lump on my right testicle. My primary care doctor sent me for an ultra sound and directly to a urological surgeon.

    The surgeon had the results of the ultrasound when I went for that appointment the next day. He said it showed that there was "a good chance" it was testicular cancer.

    I had suspected as much from reading up on what a lump and ultrasound normally meant on the NIH, WebMD and the NHS (British) websites. I trust all of those sites.

    I'm a bit of different patient. I've had five surgeries and procedures that cut through the abdominal wall. A huge appendectomy scar (the doctor did an exploratory as well), a very large drain from the appendectomy (I was five years old and my appendix had burst three days before the surgery leaving a need to drain out the puss), a scar from a repair of a punctured esophagus which required the insertion of a J-Tube and a G-Tube.

    Every abdominal scar still hurts. They hurt every day. I purposefully keep my weight as low as possible as this is the only way to help the abdominal pain. Even five extra pounds from where I am (about 15 pounds below 'normal' for my height) and the abdominal pain is too much to handle.

    I'm the scars from the appendectomy, exploratory and abdominal drain are 37 years old and they hurt. The scar from my navel to my sternum (for the esophagus repair) and the J an G tube are 7 years old and they hurt.

    I've read that the testicle "must" come out via the abdomen and not via the scrotum and that no biopsies should be done.

    I have two huge problems that have sent me to four different Urologist to get the same exact answer. At his point I can recite the reasons for the inguinal orchiectomy versus removing the testicle via the scrotum in my sleep.

    I'm not sure what part of "no" the Urologist are not understanding. I've been very clear, I will not have another abdominal incision. No.

    They keep telling me that it's "very well tolerated". Although when I ask how many patients they've followed up with for abdominal pain in 5 years, 10 years, 15 years they normally tell me that "although recovery times vary, most men are 'completely recovered in 6 weeks".

    That was what I heard about my J and G tube scars. But, it's been years longer than I was told and they still hurt. The general surgeon that took out the tubes saw me once again two weeks later, declared me recovered, patted me on the back, shook my hand, wished me good luck in the future and pointed toward the exit. I'm sure he tells his patients that it's generally well tolerated and that most patients are completely healed from the J and G tubes in a few weeks. But, it's not true.

    Abdominal surgical scars hurt, from my experience, for the rest of my life (well, at least for 37 years).

    So, I've been quite clear with all but the first urologist I've seen (the fist one scheduled my surgery for a couple of days later, but when the surgical center called to go over things with me I canceled it).

    I'd really like a fine needle biopsy of the lump. But, asking for that is just a waste of time - despite that fact that I was assured the needle biopsy I had of my thyroid could in no way spread cancer. It did turn out to be thyroid cancer. I wanted only one hemisphere removed, but was talked into a radical thyroidectomy and have been sorry ever since. I've learned that despite being told how well patients respond to levothyroxine, it's not a fun way to live - my TSH has bounced from over 100 to .006 (all of which was said to be exactly where they wanted it and it still was not "well tolerated" - at least not by me).

    So, OK, I've brought with me two pieces of paper. One with a giant list of every cancer that can be biopsied - from brain to rectal cancer. The other the list of cancers that can't be biopsied - it has only testicular cancer on it. Even prostate cancer, which has studies showing it can seed cancer in the rectum when biopsied is routinely biopsied by FNA.

    But, I've given up on a needle biopsy of the lump.

    I just want two things. First, remove the testicle via the scrotum. Second, reconstruction with a prosthetic at the same time. By law women get breast reconstruction at the same time as mastectomies. Yet, men don't get the same consideration. In fact, my insurance will cover all of the reconstruction cost only if it's done at the same time as the cancer surgery.

    I thought the first rule of medicine was "do no harm". But, I am beginning to think it's "my way or the highway".

    I've asked the last three urologist which is better to leave the testicle in me or to remove it via the scrotum. Because those are the only two options.

    I thought that would convince them to take the testicle out without leaving another painful abdominal scar. But, not so much really. No matter how much I try to explain that I'm not doing the surgery via the inguinal canal and that a scrotal incision is the only option, I might as well be talking to my cat. They've all let me walk out with what they are telling me is a testicle that urgently needs to be removed.


    I've seen my last Urologist. My plan at this point is to keep a followup I have with my primary care doctor in about a month. I'm going to let him deal with the surgeons. I don't want to get on that train and go around with yet another doctor that has no proof or studies to show that a scrotal incision can spread the cancer. In fact the only study I've been directed to says there isn't enough data, but don't do it anyway. The other study on the NIH website says is on prior scrotal incursions and shows no difference in outcome.

    So, my question is how do I get treatment that doesn't involve an abdominal incision?


  • #2
    They remove it through your groin area not your abdominal area. It is below your waist line, left or right depending on the testicle in question.
    Jan 2012- U/S mass in Left testicle
    Feb 2012- I/O performed to remove cancer
    Mar 1,2012- pathology pure seminoma
    Mar 7, 2012 PET SCAN stage IIa
    April 2012 Mayo clinic carbolite.
    May 2012 carbolite failed, started BEP x3
    August 7th 2012- BEP complete
    April 2013 CT/PET show relapse
    May 2013 RPLND
    Aug 2013 Relapse again Started VIeP x2
    Oct 2013 HDC AUTOLOGOUS
    Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
    Feb 2014 confirmed false positive all clear FINALLY !
    Jan 2015 1 year cancer free Pet/CT scan
    Jan 2016 2 years cancer free "Pet/CT scan

    Comment


    • #3
      The incision is roughly 2" above your unit not quite the abdomen area. From what I understand they do it here to make sure the cancer has not traveled through your spermatic cord and into your lymph nodes. However, you will be getting CT scans of your abdomen every 3 months or so post surgery to check for enlarged lymph nodes, so honestly I'm not sure why the Dr's are so reluctant on doing the surgery through the scrotum aside from it breaking their usual protocol.

      Comment


      • #4
        Originally posted by eodtech2001
        They remove it through your groin area not your abdominal area. It is below your waist line, left or right depending on the testicle in question.
        Originally posted by StaticX
        The incision is roughly 2" above your unit not quite the abdomen area
        Thank you for your answers. I really mean that.

        I've done quite a bit of research, staying on "real" websites like NIH, the English NHS (which I really like their site), the American Cancer Society, WebMD, various cancer centers around the country. I get anywhere from a 2" incision to "go ahead and make a larger incision as the procedure is generally well tolerated".

        My concern is based on five different surgical procedures through the muscles in the abdomen.

        Thank you for pointing out that the incision (when done via the inguinal canal) is about 2" above the pubic region. I knew that, but it's good information to make sure we're talking about the same thing.



        The abdominal muscles do extend that far down.

        If I'd not already had five incision through the muscles in that area. If I didn't know that the pain never goes away. If I didn't know that after about 6 to 8 weeks the surgeon discharges me and sends me off for care to either a GP or endocrinologist. Then, I would take the surgeon's word for it when they tell me how "well tolerated" the surgery is. But, trust me, surgeons do no followup at all on how well patients are tolerating there surgical scars past the discharge date. The only doctor I've then seen didn't do the surgery and complaining to him or her seems pointless.

        I've phoned ahead to my primary doctor (I refuse to call him my "primary care provider" as he doesn't heard my sheep, he's a doctor) and given them the heads up that I've not had surgery yet. I'm sure they got written reports from the urologist and I'll ask for copies of those.

        I'm frustrated mostly because this is not 1925, it is 2018. https://www.sciencedirect.com/scienc...22534717428734 This retrospective study show "While not to be condoned, we conclude that deviations from the classical orchiectomy, when followed by appropriate surgical management and close observation, can be of little clinical impact."

        So, basically, since an in inguinal approach is based only on an opinion expressed in 1925 and every study done since shows no difference in death rates, I'm sticking to my resolve that the doctors can exchange notes, discuss it and either leave the damned thing where it is or take it out via the scrotum. I've even made contact with doctors that do orchiectomies with little documentation of being transgender. I'd rather loose them both via the scrotum, than one via the abdomen. The lump is still small enough it most likely would be missed before a SRS castration.

        Hopefully, with a signed informed consent letter, I'll find a doctor willing to do the surgery via the scrotum, then do the reconstruction on one side only.

        But, never again any cut in my abdomen. I'd have to be in a car accident and knocked out with a busted spleen before that would ever happen. Enough abdominal pain.



        Comment


        • #5
          With TC it is usually not done via scrotom. I'm unclear if you have actually been diagnosed with TC or just have a lump? 6 months is a long time to wait for removal if TC.
          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


          • #6
            IF you have testicular cancer you should basically be worried about having the dam tumor removed with best medical practices. not picking and choosing which area to have it removed from.
            Jan 2012- U/S mass in Left testicle
            Feb 2012- I/O performed to remove cancer
            Mar 1,2012- pathology pure seminoma
            Mar 7, 2012 PET SCAN stage IIa
            April 2012 Mayo clinic carbolite.
            May 2012 carbolite failed, started BEP x3
            August 7th 2012- BEP complete
            April 2013 CT/PET show relapse
            May 2013 RPLND
            Aug 2013 Relapse again Started VIeP x2
            Oct 2013 HDC AUTOLOGOUS
            Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
            Feb 2014 confirmed false positive all clear FINALLY !
            Jan 2015 1 year cancer free Pet/CT scan
            Jan 2016 2 years cancer free "Pet/CT scan

            Comment


            • #7
              The pain you describe is really quite puzzling.I've had two I/Os,an RPLND, & 2 bowel obstructions requiring that I was opened up from breastbone to pubic bone & have never experienced anything like that once things healed up.Your primary doc should be taking this seriously, & if not, it may be time to change to one who will.

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

              Comment


              • #8
                Originally posted by Trekga
                I'm unclear if you have actually been diagnosed with TC or just have a lump? 6 months is a long time to wait for removal if TC.
                Hey @trekga Thank you for your answer. What I know is this:

                1. My primary doctor found a "concern, most likely nothing to worry about, yada yada" while doing the turn your head and cough test.
                2. I went to a local satellite of the hospital where they do blood draws, CT scans, xrays, and ultra sounds. It's in the same building as my doctor's office.
                3. They drew blood. Then, did a testicular ultrasound. By that time it was starting to seem like a blur.
                4. I think my primary suspected more than a "concern", because I got a call from my primary doctor with an appointment at the urologist (surgeon) very quickly after the ultrasound. The surgeon's office made the appointment for the next day. (that's never good news).
                5. The next day, at the urologist, I was told I needed a "biopsy" of my testicle. By that point I'd read up on it (who wouldn't have?) and knew that didn't quite mean what normally happens during a biopsy - as in a small bit removed to see if it's cancer. Rather, the surgeon said that the probability that "it" was cancer was so high that removing the entire testicle was the only option.
                6. They scheduled surgery for a couple of days later. I took the cards with the appointments for surgery and the followup at the surgeon's (urologist) office.
                7. I got online and started reading up on the surgery. I didn't remember everything he said. It was a bit like when I had thyroid cancer - things were a blur.
                8. The surgical center called to do the pre-paper work, go over what medicines to take and avoid, etc.
                9. I canceled the surgery. Told them I wanted a second opinion.

                So, to answer your question of "lump" versus "TC", it's my understanding that only a biopsy can determine that and further that based on the ultra sound and the blood work, it probably is cancer. Or at least probably enough to get the whole world of medicine to agree my testicle needs removing.

                Oddly, I don't have a problem with the testicle being removed. I only have a problem with removing it via the inguinal canal. I've most likely have more surgery than the average person by at least three times. I know surgery sucks, that "discomfort" means the doctor's nurse doesn't take the stitches out for 14 days and by then you're just coming out of the the horrible pain enough you don't actually want to hit the surgeon any longer for having used the term "discomfort" when it was agonizing pain for about 10 days.

                I get it, all surgery hurts. They cut you open with a knife - that's going to hurt when you wake up. Well, at least it's always hurt when I woke up.

                Besides more orthopedic surgeries than I can actually recall (I'm serious - car accident when I was 20 and I broke every bone in my left leg), I've also had not quite half a dozen (not counting jp drains) incisions and punctures through the abdomen. I've had toes amputated and would do that again before having another abdominal incision.

                Maybe I'm crazy, maybe I'll move through the "stages of grief" and into acceptance and have the surgery the way the surgeons are saying "it has to be done". Maybe, but it's been way over "urgent" - time wise - and I'm still not buying what they are selling in terms of not removing it via the scrotum. I'm beginning to think that doctors have a difficult time telling the difference between acceptance and just getting tired of arguing with them. So far my resolve is pretty solid.

                Comment


                • #9
                  Originally posted by eodtech2001
                  IF you have testicular cancer you should basically be worried about having the dam tumor removed with best medical practices. not picking and choosing which area to have it removed from.
                  Hey @eodtech2001 ,

                  Thanks for your answer. I am worried, of course. But, I'm worried about the pain as well. Too much experience with post surgical pain lasting for years. So, if it can be done via the scrotum and not yet another cut through the abdominal wall, why not?

                  I get along with doctors, I respect their training and knowledge (they are two different things). I'm respectful when I speak to doctors and can't ever recall raising my voice or being a difficult patient. I've been through this so many times and had so many doctors appointments that I sometimes get asked if I'm "in the business". I tell them no, just done this too many times.

                  Pick a bone in the leg and I've had surgery on it. Pick a tendon on the foot and I've had surgery on it. And I have had two toes amputated (from loss of circulation following surgery - I don't have diabetes). The toes were removed in the exam room while I watched. They'd already died. The doctor wanted to "let them declare themselves". Which meant, "fall off by themselves". I told him, "they can declare what they want, I'm declaring them dead. Take them off". The look on the Resident's face was priceless. The surgeon was just doing his job, I thought it was a blessing and the Resident was deciding that orthopedics might not be for him.

                  Doctors don't normally patronize me, because I come across as both reasonable and informed. Also, they don't intimidate me, "because I've been there and done that" (so to speak).

                  But, the second opinion doctors (is it still a second opinion if it's the 3rd one?) have all asked me "which is more important, your testicle or your life". The first doctor didn't ask - well, I'd scheduled the surgery, hadn't I? Calmly, I've told each surgeon that when I had thyroid cancer I learned to hate being told "if you have to have cancer it's the one to have" and that I don't like that question either.

                  Am I willing to take it to the limit? Meaning actually forego cancer treatment? No. I will get treatment. I might just have to go a different route.

                  I've not mentioned using a country with easy SRS rules as an alternative to my GP, but it's my last resort. So, yes, I want the tumor out.



                  Comment


                  • #10
                    Well dont know what to tell you or say to you. Because you already have your answers. So i am not really sure why you are asking then debating the answers from the forum members. So i will now move along and will not be adding anymore to your thread(s). Best of luck too you
                    Jan 2012- U/S mass in Left testicle
                    Feb 2012- I/O performed to remove cancer
                    Mar 1,2012- pathology pure seminoma
                    Mar 7, 2012 PET SCAN stage IIa
                    April 2012 Mayo clinic carbolite.
                    May 2012 carbolite failed, started BEP x3
                    August 7th 2012- BEP complete
                    April 2013 CT/PET show relapse
                    May 2013 RPLND
                    Aug 2013 Relapse again Started VIeP x2
                    Oct 2013 HDC AUTOLOGOUS
                    Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
                    Feb 2014 confirmed false positive all clear FINALLY !
                    Jan 2015 1 year cancer free Pet/CT scan
                    Jan 2016 2 years cancer free "Pet/CT scan

                    Comment


                    • #11
                      Originally posted by eodtech2001 View Post
                      Well dont know what to tell you or say to you. Because you already have your answers. So i am not really sure why you are asking then debating the answers from the forum members. So i will now move along and will not be adding anymore to your thread(s). Best of luck too you
                      Very similar to the answers I've been getting from doctors. They have no proof that trans scrotal removal is harmful. When I present them with studies (retrospective) that there is no difference in outcome - it's like talking to a house plant.

                      Then, without offering any suggestion other than, "my way or the highway", the doctors let me walk out of their office. Oh, and bill me for it.

                      I came here seeking experience of people who'd been able to avoid a painful incision for life. Maybe there is no help here.

                      But, I'm still hopeful, even if you've lost all hope.

                      Comment


                      • #12
                        Sorry to hear you are in this dilemma. I'm guessing that the reason you haven't found someone with the experience you're looking for is that most of us took the standard route when it came to the I/O because residual pain from previous surgeries was not an issue. I personally have had no problem with residual pain from my I/O.

                        But whatever you do I would recommend you do it as quickly as possible because if it is cancer and of the non-seminoma type you want it out of there before it spreads. I had embryonal type and it had spread to the retroperitoneum before my I/O. After 4 rounds of EP I still had to have an RPLND to find out the nature of the remaining enlarged lymph nodes.

                        I'm not sure you would have many options as to how an RPLND would be done if it became necessary other than to take your chances as to the nature of what was in there and pass on the surgery. But I'm guessing you've checked that out by now.

                        Do what you have to do as quickly as possible.I guess even out of the country if you have to. Good luck with whatever you decide.

                        Comment


                        • #13
                          Originally posted by Davepet View Post
                          The pain you describe is really quite puzzling.I've had two I/Os,an RPLND, & 2 bowel obstructions requiring that I was opened up from breastbone to pubic bone & have never experienced anything like that once things healed up.Your primary doc should be taking this seriously, & if not, it may be time to change to one who will.

                          Dave
                          Same, when I was very young I had both a hernia and exploratory surgery to find an undecended testicle that actually didn't exist at all. Then I had my I/O, and have also had an RPLND. I don't feel or notice them at all.

                          Have you gone to any specialists to see what the issue is and how it can be taken care of? It definitely is abnormal.

                          As for the testicle removal, you could do it via the scrotum, if you did that though I would want 1xBEP (nonseminoma found) or radiation to the pelvic area (seminoma) if cancer was found in the removed testicle. Cancer cell spillage via scrotum orchiectomy is a real thing, I believe it has happened to at least one person on this forum where they later had cancer in their pelvic area that would not have happened with a traditional I/O. I believe this happens more outside the USA and Europe when more inexperienced doctors remove the testicle via the scrotum. Standard of care in USA and Europe is via I/O.
                          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!
                          3/29/2018 all clears up to this date!

                          Comment


                          • #14
                            thanks to everyone for your answers

                            Comment


                            • #15
                              Saw my Primary Care Doctor's Nurse Practitioner this morning. Told her what was going on. She was not happy that I haven't had the testicle removed yet.

                              Being Primary Care she wasn't so 100% of the I/O and said she'd make some phone calls and consult with the Doctor she works under. But, her take was about like mine, if I'm refusing the I/O, but willing to do a trans scrotal orchiectomy, of the two choices (either leave the testicle where it is or remove it via the scrotum), removing it for the biopsy makes more sense. But, she not a doctor and I'm not hopeful. We'll see. My other options is still there which is having the testicles removed by a doctor that does it without a therapy letter. The problem there is no pathology report. But, anything is better than another abdominal cut.

                              Comment

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