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My Experience-- Diagnosis/Orchiectomy/RPLND

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  • My Experience-- Diagnosis/Orchiectomy/RPLND

    I found this site/ these message boards immensely helpful after my initial testicular cancer diagnosis and during my subsequent treatment. I’m hopeful that by adding my “story” I can contribute in some small way to helping others who find themselves in similar circumstances. Please reach out directly if there’s anything else I can help with or answer.

    In Jan. '12 I noticed a small, hardish growth on my left testicle. I was 34 at the time and had never had any serious health issues, cancer of any kind in the family nor any of the other associated risk factors for TC. I hadn’t noticed the growth before, but having heard enough about the disease to know not to mess around with it, I called my regular doctor and made an appointment. After that appointment he assured me it was very likely something other than TC, but referred to a radiologist for an ultrasound to be sure. I went the next day and then met with a well regarded Urologist/Oncologist out of NYU for a battery of tests (physical exam, ultrasound review, blood and urine analysis and, ultimately, a CT scan and chest X-Ray). Even before the results officially came in I was told that based on the ultrasound, it was a tumor and I would have to undergo an orchiectomy, which was scheduled for 4 days later (there was a weekend in between). The test results came in that night however and confirmed it was a non-seminoma tumor and hopefully Stage 1:

    Elevated AFP: 78
    Elevated HCG: 87
    LDH: Normal
    CT & X-Ray: No signs of spread

    The key lesson here was, while TC is extremely rare and there are many more plausible things the bump could have been, it could also be cancer and early detection is critical.

    At this stage there is basically 100% medical consensus that you should have an orchiectomy and fast. I spent a good amount of time trying to find any alternatives and found that there really are none (unless you want to roll the dice unnecessarily). While traumatic, an orchiectomy is a simple, fast, out-patient procedure. You go under general anesthetic and will need 3 or 4 days to be able to really start moving around well again, the long-term physical effects are minimal (an irregular nagging numbness/tenderness around the incision area). As a married 34 year old that may be easier to say however than for younger, single men. I considered the prosthetic testicle they offer, but was advised by the doctor (and saw in a significant amount of people’s posts) that they can be very uncomfortable/feel very unnatural to you (not sure about to others). Another, separate consideration at the time was any risk to fertility (we had not yet had kids), but there’s no need to sperm bank before this procedure.

    As I mentioned, it does take a few days to recover and in my case the first two were pretty painful in terms of getting in and out of bed particularly, but that subsides quickly and painkillers help.

    It then took about 6 or 7 days to get back the pathology report, which showed the tumor to be 80% embryonal and 15% yolk sac as well vascular invasion. Those are basically the two things you don’t want to see in summary (risky tumor make up and vascular invasion). While there were no signs of spread beyond the testicle at that point (and my tumor markers were dropping as one would expect if all’s clear) I was informed that there was a better than 50% chance that at some point in the next 2 years cancer would show up elsewhere (lymph nodes or lungs most likely). The two courses of action were observation or RPLND surgery. Because I was officially still Stage 1, pro-active chemo was not a real medical option, nor would I want to have done it.

    The decision tree here, after a significant amount of research, is what I had the most difficulty working through, but ultimately I went with surgery. To get to the point where I was comfortable making that decision, though, I took some steps that I hope are helpful to those faced with the same situation. Living in NY, I was lucky enough to have some of best TC specialists nearby. While I had had excellent treatment at NYU, I wanted to get a second opinion. Sloan Kettering (along with Indiana) is arguably the best treatment center for this disease in the US, so for geographic reasons we made an appointment at Sloan Kettering. We saw Darren Feldman as primary oncologist (George Bosl was hugely recommended as well) and Joel Sheinfeld as urological surgeon. Based on reputation and experience in the area (particularly RPLND surgery) I ultimately decided to switch to Sloan for treatment. Before deciding definitively to do the surgery however, I consulted every resource imaginable (including the top Canadian specialists because in Canada RPLND is not done at my stage in treatment). For me the emotional drain of surveillance (CT, blood, and X-Ray every month) knowing that there’s a better than 50% chance something was going to have spread, at which point chemo is the next stop, was not realistic. Besides the emotional aspects, I also wanted to reduce the chances I would have to undergo chemotherapy if at all possible for all the obvious reasons.

    RPLND is very scary. The descriptions you read about are graphic and accurate. That said, people undergo it every day and, preformed by the right physician, it is a safe and effective procedure, carrying with it the same risks as any major surgery. Timing-wise, my surgery was scheduled for about 6 weeks after the orchiectomy. The prep/lead up to the surgery is not too bad. The day before there’s some uncomfortable intestinal “cleansing” and fasting but other than that I found it to be more a matter a managing nerves. I tried to avoid too many of the surgical specifics of the operation, but rather spoke with as many people as I could find who had also undergone it to get their perspectives. Obviously online accounts help too. I also was given a few books on meditation, which were helpful to help ease the anxiety and jitters.

    The other important thing to consider during this time is sperm banking. The risks are twofold. First, the operation carries a risk of damaging the nerve that controls ejaculation and result in one's semen somehow ending up in the bladder rather than ejaculating. While there’s no actual physical harm in that, for all of the obvious reasons it’s not ideal. That condition can last for as little as a month or as long as a couple of years. Or everything can be fine. I got a lot of mixed messages on this point (I think the physicians really can’t predict with any certainty how things will go so they hedge). In my case for what it’s worth, there we no issues whatsoever on that front. The other fertility risk is that if following the surgery the biopsies that are conducted on the lymph nodes find that the cancer has spread, you will be sent to chemo as quickly as possible (with no time to sperm bank before (assuming that the first risk doesn’t materialize)). All in all, between those two risks, if you have any interest in having kids in the future, it’s a no brainer to sperm bank.

    The surgery, or at least the lead up to it, is helpfully matter a fact. You go in, change and then it's time. The surgery lasted 4 hours (I was told it could last much longer). Another concern, for which I never really got a completely clear answer, is what I could expect when I woke up. I had read (and been told) that in some cases the tube up one's nose and another out of one's abdomen sometimes have to remain post-surgery. Very fortunately, I did not have that experience. Something to ask about though.

    Post-surgery is a tough slog, but with the painkillers (morphine drip you can self-administer, but not in any quantity that would hurt you) and what I found to be the body's natural coping mechanism (bizarrely I quickly just got used to the feeling) it's bearable. The pain is pretty intense for the first 4 or 5 days or so, especially the longer you go without administering the painkiller, but does gradually improve. The best and most important piece of advice I received and recommend is to walk. Walk as much as you possibly can. It really does speed up healing as well as the return of normal intestinal function which ultimately is your ticket home. The complete fast for those initial 4 or 5 days (at least how it was done at Sloan) is also quite challenging. While you do receive fluids/nutrients through an IV and have very little appetite, I was parched and there's only so much rinsing your mouth out will do. A bucket with ice water and swabs really helped me. The last piece of the in hospital recovery worth mentioning that I did not hear a lot about before what the swelling I experienced in my lower half. Apparently everyone does, but for whatever reason it's not really publicized. It's nothing serious and does go down after about 2 weeks post surgery, but I wish I'd known to expect the significantly swollen legs (left in particular) and scrotum. The swelling is a bit bizarre and definitely uncomfortable, but does go down quickly and ultimately harmlessly.

    Once home after a week (with biopsy thankfully all clear), the healing process really accelerates (continuing as much walking as possible) and after two weeks (from surgery) I was able to start going properly outside and slowly getting back to life. After a little over 3 weeks I was back at work and basically feeling pretty good after 2 months. After 3 months I was nearly back to my old self.

    There are a huge number of other details surrounding treatment, surgery and recovery that I’ve skipped over here, but hopefully the above helps fill in some of the blanks that I at least found un- or under-answered during my experience. Please don’t hesitate to reach out if more would be helpful.
    Last edited by tcforumusername; 01-24-13, 04:36 PM.

  • #2
    What did the nodes reveal? I was in your position and ultimately canceled having RPLND. The more I read the more it scared me. I guess I never really quite understood why it would be recommended if one will have to have chemo anyway if the surgery reveals cancer cells in the lymph nodes.


    • #3
      Nodes were all clear (took our 72 or so). I took comfort (a) from knowing definitely all was clear and, as importantly, (b) removing the main highway by which anything else hanging around might have travelled. Nothing's 100% but getting my odds to the best place they could be was the goal.


      • #4
        Thanks for that post. My son is scheduled for RPLND next week with Dr. Shienfeld. I never heard about the swelling in the legs, etc. and I am glad that you mentioned that . Anything that can take away some of the fears of this surgery are helpful at this point and hearing your story and how well you recovered gives me hope for my son. Thanks again and so glad all worked out for you.


        • #5
          Hey thanks for the post, and great story! Just a point of clarification though, if you were Stage IB with a non-seminoma (lymph-vascular invasion), then chemo is indeed an option at that stage, 1 or 2xBEP. Wasn't quite clear from your wording if you were IA or IB. I see you were treated at Sloan-Kettering though, and I know they have their own approach to things. What did Dr. Feldman say? Did he offer chemo as an option or did he send you straight over to Dr. Sheinfeld for consultation for the RPLND? Glad to hear everything was all clear in all 72 of the nodes removed! Wow that's a pretty impressive number of nodes. Dr. Sheinfeld is the man!
          Young Adult Cancer Survivorship by Steve Pake
          April is Testicular Cancer Awareness Month!

          Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
          My Survivorship Thread | All of my Blogs


          • #6
            Yes, I was 1-B. The Sloan-Kettering protocol with my factbase was no chemo (Dr. Feldman concurred), just observation or RPLND (for what it's worth, chemo was not on the table for me at NYU either). That said, I know that elsewhere, and definitely internationally, chemo would be an option or even recommended. As I mentioned though, my instinct was, if lucky enough to have the choice, to try and avoid chemotherapy if at all reasonably possible.