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Final Update - No Abdominal Cut

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  • Final Update - No Abdominal Cut

    --- Final Update ---

    First, I want to say that I hope every guy on this group stays healthy and gets the best medical care available.

    Second, I know that my journey was unique. I DO NOT RECOMMEND THAT ANYONE USE MY EXPERIENCE OVER THEIR CONSULTATIONS WITH THEIR DOCTORS. It's your journey and you, your loved ones and your doctor need to do what you feel most comfortable with.
    • In the middle of July 2017 a had a painless lump on my right testicle.
    • My primary doctor sent me for an ultra sound and made an appointment for me to see a urologist.
    • The urologist told me that based on the ultrasound and feeling the lump that it was virtually certain to be testicular cancer.
    • He ordered tumor markers. I later found out they were in the normal range. But was told they'd be used as a baseline.
    • I explained that I was more than willing to have the testicle removed.
    • I've had multiple surgeries in the abdomen which are complicated by strictures I have from
      • peritonitis I had at age 10 from a burst appendix.
      • a j-tube scar,
      • a g-tube scar,
      • a 6” scar to do a kidney exploratory and appendectomy,
      • a scar from my navel to my sternum to fix a ruptured esophagus.
    So I was not willing to have another incision in my abdomen. I'm in constant pain from every abdominal scar I have. I need to keep my weight down to about 15 pounds less than normal – otherwise, the pain from the abdominal scars is unbearable. I can tell when I've gained even 5 pounds and will instantly cut back on food to lose the five pounds and mitigate the abdominal pain from the scars and strictures.
    • My first request was that:
      • The right testicle be biopsied via FNA to confirm cancer (the answer was no)
      • That the right testicle be removed via the scrotum. (the answer was no)
      • That reconstruction surgery be completed at the same time as the cancer surgery – exactly as it's done for women with breast cancer – with the placement of a prosthetic (the answer was no.) Even though reconstruction for women's breasts are required by law at the same time as the breast is removed, testicular cancer reconstruction is considered cosmetic. Yet, breast reconstruction is considered medical.
    • I changed my requests. No needle biopsy, no testicular implant.
      • Just no transinguinal orchiectomy.
      • I wanted the testicle removed with a scrotal incision.
    The answer was no. From four different urologist, I got the same answer. Basically, “it's urgent you have your testicle removed now. But, if you won't allow me to do it via an abdominal incision, I'm not the doctor for you”. I was allowed to leave with what they just told me was cancer and that it needed to come out urgently.

    I used my primary care doctor to help. But, to no avail.

    I'm not stupid. Testicular cancer needs to be removed – I get that. What the doctors weren't getting or simply choosing to ignore was my request that I not have another abdominal incision.

    I know some say that it's not the abdomen, it's the groin. But a quick check of any graphic of the abdomen clearly shows the abdominal muscles go down that far.

    So, I found a clinic in Mexico that does sexual reassignment surgery. They don't require the same therapist letters as are required in the US.

    They do require a chest xray and normal pre-op blood work. I had both of those already (luckily the tumor markers had been done on a separate order and I could just bring the metabolic panel, lipids and PSA test results – as they were ordered together).

    Unfortunately, at the Mexican clinic it was either both or none. Between having both testicles removed via the scrotum or one that created another abdominal scar to hurt forever like the others do, I decided I'd rather lose both.

    So, it was a ten day trip to Guadalajara and I came home a eunuch -being a eunuch was not my goal.

    The problem was testosterone. But, a gel I rub on every day has taken care of that.

    My primary doctor wasn't happy. Mostly because, there was no tissue to biopsy and thus no pathology report. She (the Nurse Practitioner) wanted me to have a CT scan of the abdomen and more blood tumor markers done.

    I did the blood work and begged off the CT scan. The blood markers are still normal.

    At the very least I'm done with urologist in the United States as there isn't much they ever put back on men – only bits they cut off or out of men.

    The CT scan is still being pushed by my primary care doctor and the NP. But, even if it found enlarged nodes, I'm not having surgery that requires an abdominal cut. I'm not a candidate for a laparoscopic RPLND because of the multiple strictures in my abdomen from the peritonitis.

    Tumor markers still remain in the normal range and I'm becoming more willing to consider the CT scan. Doctors can be persuasive – if for no other reason than they always stick to the same logic.

    Did I dodge a bullet? Or am I a walking time bomb? I don't know. But, I feel good. I'm still 15 pounds underweight which helps the abdominal pain.

    I'm not blaming urologist or any doctors for refusing the transscrotal orchiectomy – it's what they're taught. I think that perhaps they should consider a patient with multiple prior abdominal incisions as telling the truth when he says he won't consent to another abdominal surgery.


  • #2
    My only advice is to still get the CT scan. Since you don't have a pathology, you don't know what you might have had. If you had a seminoma, it may have spread and it does not raise blood markers. Blood markers are raised with non-seminomas. Seminoma's may be slower growing, but they can still kill you if you don't get them checked. Get your CT scan. Even if they are enlarged, that does not mean you are getting an incision. Chemo and/or radiation could take care of it without surgery.

    Until you get a CT scan, I think that yes, you are a walking time bomb. I understand the reason for wishing skip another incision... I don't understand the choice not to get a scan.

    Better safe than sorry, in my opinion.
    My story so far: 7/22/2018: Discovery rock hard mass on testicle while on vacation 7/26/2018: Urologist confirms mass; immediately get blood work and ultrasound. 7/31/2018: Ultrasound result show mass in right testicle, "highly suspicious of neoplasm". 8/3/2018: Right I/O 8/7/2018: Pathology confirms 100% seminoma. Multifocal. 2 tumors, both 2.5 x 2.5 x 2cm. LVI present. No cord involvement. 8/14/2018: CT of chest/abdomen/pelvis complete 8/17/2018: CT of chest clear, abdomen shows one lymph node 1.7 x 1.3. Staged IIA 8/22/2018: First radiology appointment, debating surveillance vs 3 weeks radiation

    Comment


    • #3
      Originally posted by ICU-RN View Post
      . If you had a seminoma, it may have spread and it does not raise blood markers. Blood markers are raised with non-seminomas. Seminoma's may be slower growing, but they can still kill you if you don't get them checked.
      Afraid that's wrong, seminomas absolutely CAN raise markers ( but do not always do so) and Non-seminomas sometimes do not raise them. Markers are only useful when raised, a lack of them is meaningless by itself.

      Dave

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

      Comment


      • #4
        Just wanted to tell you that I think you did the right thing (i was quite shocked by the amount of negative responses you got in your previous threads and even more by the reactions of your docs).
        Is there a possibility to correct the problems that are causing you pain? Are they adhesions (dunno if it's the right translation for the German term "Verwachsungen")? If yes, then I've read about a possibility to treat them, but I've not read further.

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        • #5
          Tumor markers are irrelevant in your case. Do the CT.
          45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
          Waiting...

          Comment


          • #6
            Originally posted by Davepet View Post

            Afraid that's wrong, seminomas absolutely CAN raise markers ( but do not always do so) and Non-seminomas sometimes do not raise them. Markers are only useful when raised, a lack of them is meaningless by itself.

            Dave
            Very rarely tho. Pure seminoma's never raise AFP, and only occasionally raise HCG. For the most part, blood markers are unaffected by pure seminoma's, except occasionally the HCG. LDH can be raised, but not always, and could be other issues so isn't totally reliable. See this link: https://www.cancer.org/cancer/testic...diagnosed.html

            But yes, you are correct that pure seminoma's can raise markers; but a lot of the time it doesn't (it didn't with mine). Either way, my point remains the same; blood markers being unaffected mean nothing in this case; a CT scan is imperative in order to ensure it hasn't spread.
            Last edited by ICU-RN; 08-27-18, 12:20 PM.
            My story so far: 7/22/2018: Discovery rock hard mass on testicle while on vacation 7/26/2018: Urologist confirms mass; immediately get blood work and ultrasound. 7/31/2018: Ultrasound result show mass in right testicle, "highly suspicious of neoplasm". 8/3/2018: Right I/O 8/7/2018: Pathology confirms 100% seminoma. Multifocal. 2 tumors, both 2.5 x 2.5 x 2cm. LVI present. No cord involvement. 8/14/2018: CT of chest/abdomen/pelvis complete 8/17/2018: CT of chest clear, abdomen shows one lymph node 1.7 x 1.3. Staged IIA 8/22/2018: First radiology appointment, debating surveillance vs 3 weeks radiation

            Comment


            • #7
              My sons tumor markers were never raised and he had both types of cells in his tumor....... it spread to the lymph nodes. have the CAT scan.

              Comment


              • #8
                Thanks everyone. I'm scheduling the CT scan.

                Apparently it's not only doctors that can be consistent in their logic but, members on this group as well. So thank you for the input. I've had CT scans done before and have never had issues with small spaces nor the contrast they sometimes use. The overuse of CT scans can be concerning under the right circumstances. This is not one of those circumstances. My only resistance was an unwillingness to do another giant abdominal surgery.

                Of course my primary has mentioned chemo and radiation as an alternative to an RPLND. Well more the NP as she seems to be less frustrated with me.

                Oddly, I've never set out to be a difficult patient. In fact, I've also had many orthopedic surgeries due to a car accident when I was younger and I'm always "the easy patient". Well, in that I'm easy going and friendly. The tendons, bones and other assorted pieces that don't cooperate during or after surgery I can't control.

                Comment


                • #9
                  Finally had the CT scan. I didn't delay it myself. It just took a bit to get on the schedule. My primary wanted to see me first (made no sense as she - the NP - had recommended it at my prior appointment).

                  So, I did some blood work (all normal enough and I'm starting to hate the phrase, "at your age"). To schedule the CT, the doctor's medical assistant calls the hospital annex (which is across the hall from my doctor) and then they call the patient.

                  So, they called and we scheduled the CT scan. I've had them before and they don't bother me. I know some people hate the small enclosed space – but, I'm fine with it.

                  They used contrast, which I've had before. It makes me feel “odd” and even makes me feel as if I've wet myself when I haven't. So, I expected that.

                  As an aside, I asked about an MRI instead (because it doesn't use xrays) and was told that for abdominal lymph nodes CT scans are the “gold standard”. OK, I've been trouble enough to I went with it.

                  My doctor has a patient portal and I was able to see the CT scan results before the follow up.

                  From what I could read, there were no serious concerns. There were some “shotty” nodes and a node near the ilium that was just a little bigger than they'd like (it was 1cm). Also the scan showed considerable scar tissue near the sump of the appendix and scar tissue near the ilium. It also showed so atrophy of the adrenal gland on my right kidney. But, I've know that for decades from two prior IVP studies.

                  Even though I'd read the report, my primary wanted to see me. She (the NP) was somewhat concerned about the 1cm node but, not overly so. It was just the one node that was enlarged and apparently enlarged nodes in the region are common. I've had a recent colonoscopy (about 11 months ago) and the biopsies from that were normal. But it also showed scar tissue near the stump of the appendix.

                  We're back to “active surveillance” or “watchful waiting” (which ever sounds better). I also had a chest x-ray and it was normal except for “nipple shadows”. Next chest x-ray they'll order with nipple markers.

                  Comment


                  • #10
                    Good news, you are clear, and with fresh CT doctors have something to hold on in future surveilance.
                    45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                    Waiting...

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