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RPLND Report from Australia

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  • MelbourneDom
    started a topic RPLND Report from Australia

    RPLND Report from Australia

    Hi Everyone,

    I thought it was about time I posted about my RPLND experience to add to those already out there and hopefully allay some fears other guys might have.

    I don't have testicular cancer, but rather cancer of epididymis - a little unusual so the surgeon/oncologists used testicular cancer as a bit of a template for treatment. So, the reasons for the surgery aren't relevant to the discussion.
    The take home message, though, is that while the surgery wasn't pleasant, it really wasn't that bad either. There's some context to that though in terms of my fitness level, so let's get into the story.

    I am 32 and had an orchidectomy in November 2012 which led to my initial diagnosis. A few CT, bone, PET scans later they decided on a bi-lateral RPLND. I'm in Australia and there are only a few surgeons here who do that surgery. I opted to stay home (Melbourne) rather than travel to Sydney for the surgery. My surgeon (Jeremy Goad) does about a dozen a year. There is a guy in Sydney who does about twice as many. For me, the travel, lack of support up there and the fact that it seems neither of the surgeons do nerve sparring made the decision to stay home fairly easy. I had about a month's lead time for the surgery and was off work during this period. On the advice of my GP, I got as fit as I could. I was already pretty fit, but I made sure I was extra fit and healthy. Very little body fat, lean muscle and good aerobic capacity. I was doing yoga about 5 times a week and high intensity aerobics (body attack) 2-3 times a week.

    The surgery took about 5.5 hours (long I know) and I opted for an epidural. I woke up high as a kite and hooked up to a bunch of machines, an epidural, an IV (x2) and a catheter. The epidural was left in for 3 days which was great. There was very very little pain. I couldn't walk though so I just lay there. I was nil by mouth for 24 hours then fluids and soft food for another day or so. But I think by Day 3 or 4 I was allowed to eat just about whatever I wanted. My doctor didn't think the low fat diet was necessary, but I did follow it when I got home.

    Once the epidural was out (day 3), I could walk to the bathroom on my own. Then very very slowly I started expanding the distances. Pain kicked in once the epidural was out, and I was on oral painkillers (tramadol and endone). This was probably the worst period painwise. It hurt and it hurt deep. And the pain would exhaust you if the morphine hadn't already turned you brain into mush. It wasn't until about day 4 perhaps that I had a bowel movement despite the prune juice and coloxyl. I was still pretty tired on day 5 so stayed in hospital one more night and then left on day 6. By this stage I could shuffle maybe 100m, hunched over hugging a towel - and then would need a rest. It took me probably another whole week before I could walk far enough to leave the house. During that time I tried to get up and move as much as possible - but really it wasn't a huge amount. This worried me based on what I'd read here, but I just didn't have the energy or stamina for it. Lying down was fine, but walking sucked it out of me. I was trying to wean myself off painkillers during this time but sometimes it just hurt so I popped them pills. I continued to be on endone for 2 weeks after leaving hospital.
    As others here will attest, getting in and out of bed is really difficult. The other thing is sneezing. Tip: sneeze sitting up. I sneezed lying down once and it puts a LOT more pressure on the wound. So much so, that I actually pulled a stitch I think.

    By the end of week two, I was able to walk a bit more normally, and a bit more upright and started back at yoga (very gentle, very slow and very modified). I tried to get moving as quickly as possible while still respecting the physical restrictions. After week three, I moved back to my own house from my sister's where I was staying. This meant I had enough strength and stamina to walk to the shops and get a coffee (but still not lifting anything significant). I was pretty close to upright here and could walk a reasonable distance (1km?) comfortably, but it would still make me a bit tired.

    I did the low fat diet thing once I was out of hospital - the result was though that I lost close to 6 kilos which is a lot for me and it took me a few months to get back to a normal body weight. The weight loss maybe wasn't a good thing as I moved on to chemo 4 weeks after the RPLND. That meant I was bedridden for another two weeks before I could start moving again. But by 8 weeks out from the surgery (end of cycle 1) I was moving pretty freely and had regained a lot of my strength and flexibility. By the end of cycle 2 (12 weeks from surgery) I was very close to normal capacity except for a few things - backbends (that took another 2 months) and some movements. I was even doing high intensity aerobic classes (body attack) without any issue except that my abs just weren't as strong or as engaged. Despite what was going on, I was still fitter than most of the people in the class.

    So, it is major surgery but I thought it would affect me more than it did. Considering I moved on to chemo so soon afterwards, I was back doing my normal activities pretty quickly. It is now close to 6 months on and the scar is looking pretty good (except for around the pelvis where the sneeze tore it a bit). My core muscles are engaged and strong (except for some obscure muscles deep in the pelvic floor which are hard to target normally).

    The only (!) other side effect is the fact that I now have retrograde ejaculation. I get a few drops of fluid depending on how long since my last one, and how aroused I am. To be honest, that freaked me out and pissed me off at the start. My surgeon told me it was probably going to happen but that everything would feel the same - you would still orgasm, the hormone release would be the same, etc. It may have been all the chemo drugs (and dexa) playing with my head but I missed ejaculating and it did feel quite different for the first few months (which was when I was going through chemo). I'm now chemo free and orgasms are feeling pretty close to normal. It does feel different though, for the simple reason that you don't ejaculate so the physical sensation is different. But I've tested it out a few times on my own and with others and we seem to be back to 'normal'. I just get annoyed when I get asked the question "are you finished" because my partners are expecting a little more to come out :P So, there's still some adjusting to do here - between the lack of a testicle, the big scar and the underwhelming finish I sometimes feel like I have to explain everything before I start. I'll get over that, but in the beginning it made me quite anxious and upset. Not sure whether it's relevant or not but for the record I'm gay. Issues and concerns are pretty similar though though I would imagine.

    The message here? The retrograde stuff will probably suck at the start and take some getting used to. But try to be patient and, like the scar and the physical recovery, take it easy and wait until you're a few months clear of surgery/chemo to see what the new normal is like. Easy to say, and it might be hard to here at the time but as a counsellor said to me - perhaps it provides an opportunity to explore sex and orgasm from a different perspective. Orgasms often happen at the time as ejaculation but they don't have to. Have a think and a bit of an experiment with that….My libido also flatlined after the third and final round of chemo. It took about 6-8 weeks for it to pick up again. Was that mental or physical? Hard to say. All the doctors said that wasn't anything unusual and it would pick up again (and it has).

    Right - that's probably enough from me. Happy to answer any questions.

    Dom in Melbourne, Australia

  • Davepet
    replied
    Originally posted by MelbourneDom View Post
    I just get annoyed when I get asked the question "are you finished" because my partners are expecting a little more to come out :P So, there's still some adjusting to do here - between the lack of a testicle, the big scar and the underwhelming finish I sometimes feel like I have to explain everything before I start. I'll get over that, but in the beginning it made me quite anxious and upset. Not sure whether it's relevant or not but for the record I'm gay. Issues and concerns are pretty similar though though I would imagine.
    Well, I've been retro most of my life now (38 out of 58 years) & have never once been asked that question ("are you finished" ) With new partners, sometimes I explained before & sometimes I did not. It made no difference in the experience for me either way, & near as I could tell, for her either. I'm pretty sure that a few of my partners never even noticed I had only one testicle. If they did,they didn't care enough to mention it or be freaked out.

    If I ever had a partner that asked me that question, I would probably just never see her again. Wouldn't be worth wasting time on, IMHO.

    Dave

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