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  • #16
    I'm sorry to hear of the difficulty you're facing. I also found it difficult to work with clinicians who are rigorously inflexible around "evidence-based" medicine. I don't know how many times I had to look my oncologist in the eye and ask "What if a CT isn't an option?" It took nine months before she heard what I was saying, so I switched to one who was more accomodating. I feel lucky I was able to find one.

    I thought the article you posted by Giguere and colleagues was very interesting. I'm looking forward to reading beyond the abstract. (fortunately I work at a medical school, so I should be able to get the whole article).

    I hope you can find someone willing to work with you - I only wish I was well enough connected to suggest a specific surgeon for you.

    It is not unheard of to treat testicular cancer without orchidectomy (though this is usually for men with one remaining testicle, or who have GCT in both testicles - and often still involves surgery using an inguinal approach). Have you found anyone willing to talk with you about what treating the cancer with chemo alone, or frequent surveillance alone, might entail?

    Again, hope you find what you're looking for, and I'm sorry that the journey has been so arduous.
    Painless lump 5/18/2017
    Orchidectomy June 2017 (4.5cm, rete testis involvement)
    Chemo Summer 2017 (2x7AUC carboplatin)
    No evidence of relapse since, but plenty of anxiety about it.

    I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

    Comment


    • #17
      Rats, our university doesn't have access to JU back to 1988.
      I looked at a few articles that cite Giguere et al., namely Niell et al. 2007 ( https://www.sciencedirect.com/scienc...94014307000122 ), and Schlatter et al. 2003 ( https://www.sciencedirect.com/scienc...94014307000109 ). It sounds like when they go in through the scrotum, they prefer to remove not only the testis, but also that whole side of the scrotum. Is that a possibility for you?

      Also, you may find the following article helpful in making your case: ( https://www.ncbi.nlm.nih.gov/pubmed/8795414 ). Unfortunately, our library doesn't have access back to 1196 for BrJU, so I can't pull the whole thing for you.

      Again, best of luck to you.
      Painless lump 5/18/2017
      Orchidectomy June 2017 (4.5cm, rete testis involvement)
      Chemo Summer 2017 (2x7AUC carboplatin)
      No evidence of relapse since, but plenty of anxiety about it.

      I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

      Comment


      • #18
        Originally posted by billandtuna View Post
        It is not unheard of to treat testicular cancer without orchidectomy (though this is usually for men with one remaining testicle, or who have GCT in both testicles - and often still involves surgery using an inguinal approach)..
        Well, I've never heard of it? This is testicular cancer, a disease which has proven treatments that cure well into the high 90% of patients, but still guys die, we just got word of one in the last couple of days on this forum.Why anybody with a life threatening illness would risk their lives playing around with unproven protocols when the prognosis is so good with proven protocols is beyond my imagination.

        I could be wrong, but my understanding is that chemo isn't very successful at getting into the testicle. I wouldn't even consider this without a LOT of evidence it works as well as traditional treatments.

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

        Comment


        • #19
          Hey, thanks to both of you for the reply. I'm not opposed to the orchidectomy , just to the I/O approach. I want the testicle removed via the scrotum. I've had many abdominal incisions in my life some decades old and they all still hurt every day.

          I had peritonitis from a burst appendix when I was young. The doctor failed to dx it as a burst appendix and left me in the hospital for three days as the infection spread. He thought it was a kidney infection. So, the strictures in my abdomen are very bad.

          I get the impression the urologists are of the opinion that I'll come around to the I/O versus scrotal removal and they are just waiting me out. But my primary is very good about getting back to me, so we'll see.

          Comment


          • #20
            Well,is it better to have incision pain from a life-saving procedure or to die from TC? I've had that choice a few times in my life& always chose to live.Your choice, I guess. Sorry if that seems a bit harsh.

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

            Comment


            • #21
              It's gone.

              It wasn't easy and most likely not the best way to have it done, but it's out.

              I'll try to make a long story short and I'm not recommending that anyone do it this way, but this is what happened.

              After numerous visits to urologist and my GP doctor, it was obvious I wasn't going to get any US based urologist/surgeon to remove the suspected (right) testicle via the scrotum. Even with the only option being to leave it there versus a transscrotal approach, they would not budge.

              I'm wasn't crazy, I fully understood the testicle needed to be removed. So, I contacted The Mťxico Transgender Center. I had to pay for my transportation, meals, etc. A simple bilateral orchiectomy and scrotoplasty was about $2,000 US dollars. Three days recovery in a nearby hotel and I flew home.

              That was the easy part. The "it wasn't easy part" was when I got home. I was healing fine, the stitches were dissolvable, so, a few more days of taking it easy and I was well on my to thinking it was over.

              At a scheduled followup with my GP Nurse Practitioner, I told her what I'd done. She wasn't upset or judgemental, just concerned. At first it looked like they were going to put me on a 72 hour psychiatric hold. But since I didn't do it to myself and had it done by a licensed doctor in the country where it was done that wasn't an option. Thank God.

              Then, my Nurse Practitioner wanted me to go back to urologist number one - where it more or less started. She'd made a few phone calls and I got the impression it was more than a referral and just shy of a demand. So, feeling as if I had no choice, I went to see him the next day.

              Not amused barely describes his mood. Although he was 100% professional, every word was dripping with disdain. Even so, that wasn't the part that wasn't easy.

              Now, the urologist wants to remove the seminal vessels and remaining spermatic cords via an I/O style incision. Once again, I let them schedule the surgery. It was scheduled for the next week as I saw the urologist on a Friday. They don't tell you the time of the surgery until the day prior, but they do call you to go over meds and instructions from the surgery center and I canceled the appointment.

              The urologist office called and I told them I was going for a 2nd opinion.

              The part that wasn't easy is my Nurse Practitioner got the report from the urologist that I'd canceled the surgery to get a 2nd opinion. I went back in and told her I wasn't having a cut in my abdomen. Same conversation we've been having for the better part of a year.

              The part that wasn't easy was I'm 99% sure she's going to drop me as a patient. I like her, we've been through a great deal together, both with myself and members of my family. Her frustration was so thick you could cut the air with a knife. She tried to explain that now that the testicle is in medical waste somewhere in Mexico, the only way to "type the cancer" (her words) was with the seminal vessel and even that might not work. She said chemo and radiation therapy would depend of knowing what kind of cancer it was and if it had spread to the abdominal lymph node.

              I get it, I'm not stupid. I am, however, just young enough that I want to live a few more decades and just old enough that I know I never want another abdominal incision.

              Again, I do not recommend this course of action to anyone else. It is my journey and maybe I'll be fine and maybe I'll regret it. Maybe (I doubt it) the doctors who refused to do the transscrotal removal will not be so quick to refuse the next patient. I know I'd be better off if the lump could be biopsied, but given my choices, I'd do it again.

              Comment


              • #22
                One last post and I'll wander off. I'm well aware that since all of the cancer survivors on here had an I/O, it's difficult for you all to comprehend my 100% unwillingness to have another abdominal incision.

                Anyway, the one last thing is this. Obviously, I need testosterone replacement therapy. The same endocrinologist that does my thyroid cancer followup is doing the Androgel. That part was pretty easy actually.

                Comment


                • #23
                  I do not even know how to respond.
                  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


                  • #24
                    You should, at minimum, have the removed testes and attached parts biopsied so that you can confirm cancer, and if so, what histology. This should have been part of your care in Mexico, and if they were unwilling, you should have had them preserve them for examination somehow in the US.

                    The whole point of an I/O is to get the spermatic cord and seminal vessels out the path of lymphatic drainage to eliminate the risk of cancer spread to other places, as well as to biopsy them as they are another indicator. It is not surprising your US urologist wanted to do this.

                    The reason your doctors are so concerned is because of 2 things IMHO:
                    1. Standard of care. TC is highly curable by following established, well regarded procedures and guidelines.
                    2. Liability. Allowing a patient to convince yourself to go against the standard of care in such an obvious way sounds like a major future liability. If you succumb to cancer or your quality of life is hampered by this, you or your family could sue the doctor for malpractice for not following his training and wisdom. See here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3088386/

                    What were the results of your tumor markers and CT scans? I don't believe you ever told us.
                    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


                    • #25
                      QUOTE=biwi;n310240]You should, at minimum, have the removed testes and attached parts biopsied so that you can confirm cancer, and if so, what histology. This should have been part of your care in Mexico, and if they were unwilling, you should have had them preserve them for examination somehow in the US.[/QUOTE]

                      I didn't tell the doctor in Mexico about the probable TC. This clinic, as the ones in Thiland and a Doctor in Michigan, do not require therapist letters for body integrity issues. Frankly they didn't ask many questions at all. They did have me email them copy of my most recent blood work. The tumor markers were done as on a different blood draw. I had my normal blood work done, then they found the lump, then they just did the tumor markers. So, with my blood work all looking good, they just did the procedure under a local.

                      Comment


                      • #26
                        Therefore there wasn't much chance of getting a biopsy of the removed testicle. That's the reason I had both removed. Asking for only one to be removed would have been odd. Most men with body integrity issues don't want just one testicle removed. If the doctor saw anything that made him think it might be cancer, he didn't say anything.

                        Originally posted by biwi View Post
                        The whole point of an I/O is to get the spermatic cord and seminal vessels out the path of lymphatic drainage to eliminate the risk of cancer spread to other places, as well as to biopsy them as they are another indicator. It is not surprising your US urologist wanted to do this.


                        He wanted to do it at the same time he removed the testicle. Now he wants to do it via an I/O style cut to just remove the seminal vessel and the remaining cord. If I was willing to have an abdominal cut, I would have just had the testicle removed with the seminal vessel and the cord.

                        Comment


                        • #27
                          Originally posted by biwi View Post
                          1. Standard of care. TC is highly curable by following established, well regarded procedures and guidelines.


                          I understand that. Doctors go to school for 12 years of primary education, 4 years to get a BA, 4 years of medical school, 1 year of internship, 2 years as a resident and then a fellowship. They are trained to do things in the accepted way. Years later, that way might be changed, but as of now an I/O is the standard of care for TC. Even if the patient says they won't do it.

                          I think most doctors think of such refusal as being one of the "stages of grief" and that the patient will come around to acceptance eventually.



                          Comment


                          • #28
                            Iím facing a late recurrence with poor prognosis right now. After reading through this thread I am at a loss.

                            As has been stated multiple times the Ďstandardí treatments are so effective to deviate from that standard just blows my mind.

                            My I/O scar is not abdomen but pelvis. With how treatable testicular cancer is when caught early it blows my mind that you seem to be taunting death.

                            Iím scared, to the point I feel Iím making myself sick, that Iím not going to survive the cancer this time. I would do anything to survive. If they had to paralyze me because of the tumor being on my spine I would accept it. Youíre taunting death with something so likely to be curable.

                            Comment


                            • #29
                              Everyone has already explained very well why they are concerned with your choice. Let me add anotherÖ itís been several MONTHS since you first posted about this. This stuff can spread FAST. During diagnosis so many spots were found in my husbandís lungs the scans looked like heíd inhaled a string of Christmas lights. Just 5 weeks earlier, he had a perfectly normal chest x-ray. The same day the stuff in the lungs was found a spot on the liver was found too. A week later, an ER doctor found more spots in the liver. Treatment stated soon after. Not much changed. 2nd line chemo was effective for a while, then it suddenly wasnít. Things progressed quick after that. Iím going to be very blunt with you. My husband is DEAD. By now you could be at a very advanced stage. You said in a recent post you wanted to live a few more decades. If thatís the case, you need to start listening to your doctors and also get some scans. At the very least get the scans. Yes, this is YOUR choice, but having personally witnessed what happens when you donít catch this stuff in time, Iím seriously concerned by the amount of time that has gone by here. During the last weeks of my husbandís life he had a collapsed lung and severe hemorrhagic shock. It spread to his brain and his spine. The last 20 minutes of his life he felt like he was suffocating. Do you really want that for yourself?
                              Sorry for being so blunt, but your actions (or lack thereof) contradict your stated desire to live.

                              Comment


                              • #30
                                Sorry if I caused trouble by telling my truth..

                                Apparently with no warning my IP address was banned. No messages, no emails, just banned my IP address.

                                Maybe I bucked "the system" too much. But there is such a thing as surgery fatique -patients who simply will not have more surgery in a given area.

                                I'll leave and go away quietly. I still think patients legitimate concerns should be addressed with better than doctors that patronize and "support sites" that ban IP addresses just because I refused a "standard of care" that has no science based medicine that proves it works better than a trans scrotal removal. The few studies that have been done clearly showed no difference in mortality.

                                Goodbye and wish nothing but good things to everyone. Just be careful not to make any statements of concern or disagreement - it might get you banned as well.

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