I had a prostatectomy a week ago today at Medway Maritime Hospital which is the centre used for urology cancer services in West Kent. My main urology outpatient service is in Maidstone. (They have fab nurse consultants and we are all allocated to one.)
David and I have been together for 28 years. Last August we decided to send off for some blood test kits to take each other's blood for a health screen (we are both fit, health-concious psychiatrists). My PSA came back as raised at 9.0. I made an appointment with the GP who repeated it (8.3) and referred me for a cancer-related fast-track outpatient appointment at Maidstone. The doctor there felt a lump on my prostate and ordered a MRI, a TRUS biopsy, and a bone scan all of which I found less uncomfortable or difficult than I had expected.
At the appointment to give me my results I was told I had Gleason 4 + 3 on the right, confined to the prostate. We had read up about prostate cancer, so I was not surprised to be referred to the local surgeon who does prostatectomies and the oncologist who looks after radiotherapy (and hormone treatment, I guess). This needed treatment, as opposed to the active surveillance for lower-grade cancer that I had hoped for. Everyone told us there was time to make the best decision for us. It was a mixed blessing to have to chose, as opposed to being informed by an expert, what was the best next step. Only the surgeon came off the fence at this point, and he even said that he thought mine could have started breeching the capsule of the prostate because it was right on the periphery.
We had read about HIFU and were very keen to see if this was viable for me as it offered localised treatment of a lump of cancer rather than full-organ (radical) treatment, and hence avoid the incontinence associated with removing the sphincter round the urethra, and erectile dysfunction caused by removing the nerves supplying erection, not to mention the loss of semen due to the seminal glands coming away with the prostate and all those other bits. We went to see Prof E (who works at UCLH) privately, taking my MRI on a CD. He got my scan re-reported by the radiologists he works with and unfortunately my disease was too multifocal for very localised treatment. There was some on the left plus the lump on the right was too near the edge of the prostate. HIFU needs a margin of healthy prostate around the diseased part.
We went back to Maidstone and said we 'wanted' the prostatectomy. I allowed myself to acknowledge the advantages of surgery over HIFU: the cancer would be gone for good (with luck!).
The time from diagnosis to treatment allowed us to try to get our heads around what was coming up in terms of side effects from surgery. Our sex life has always been central in our relationship, and we are both very worried about losing that. The consensus is that stornger erections are necessary for anal than for vaginal penetration. If our sex life has gone in its previous form we will have to find ways to get around that, but it would be a challenge for us both to do the necessary communicating.
The central role of the prostate in men's sexual experience goes unmentioned. Prostate cancer is also not talked about as much as, or in the same tones as, say, breast cancer. Men with PC are losing something very dear to them with radical treatments. I am sure this realtes to the fact that men talk less abut feelings, and like to deal with solutions in one go. (I include myself.)
We have found out a lot about penile rehabilitation - the things you can do to maximize the chances of regaining erectile function and/or to optimize what the erections are like if/when they do return. Good signs for return of function are that I am relatively young, fit, with previously good erections, and the surgeon said he was able to do good nerve-sparing on the left during my operation.
We have invested in a bathmate (vacuum pump that uses water rather than air, which you can use in the bath or shower) and a viberect (a kind of double-headed dildo, like a tong, that delivers deep vibration to the penis, claiming to activate a reflex within the penis that can lead to erection without the connection to the spinal cord through nerves being in place). I need to wait for a bit more healing time after the operation before getting going with these, but I tried them before the operation (as advised!) to get used to them. The viberect is certainly very powerful when all the nerves are intact!
I went to a group held at the Metro Centre in Greenwich for LGBT men with prostate cancer (and their partners), and this was a fantastic find, because it was possible to talk about all ones thoughts and fears and hear others' advice/experience, all in language that one might not use elsewhere. David came to the second meeting I went to, and we will go back. It's called Metro Walnut.
Much of the literature about PC refers to female sexual partners, so one can feel invisible as a gay man. Also judging from some members of the group it can be easy to feel very uncertain about being treated with respect if you come out when receiving health services. Even if you do you might not want to 'talk dirty' with a health professional. I encourage everyone to do so, though: mostly they will be fine, and how else are they to learn if you stay quiet because of your fear?
I have found that things have gone smoothly since the operation in that the catheter is surprisingly difficult to feel and is not painful. I have needed to stay on the laxative I was given - I didn't poo until day 3 post-op, but apart from that I have stopped regular use of pain killers (apart from paracetamol in Lem-Sip I have used for a cold). I have been prescribed 5mg daily of ciallis (the viagra-like drug aimed at optimizing blood supply to the penis to keep it as healthy as possible while it isn't getting erect). Because I am mobile now I am thinking of stopping the TED stockings and Fragmin that they had advised I use for a month to prevent deep vein thrombosis.
I have to go to Maidstone Hospital tomorrow to have the catheter removed, so that will be the start of the next chapter: seeing how continent I am, plus some fiddling with my willy to see if there is any sign of life. (I know there won't be as the nerves are always injured at operation, but I shan't be able to resist!)
There is lots more I could say, but I will stop there for now. It is all in my personal 'prostate diary' on my iPad.
I look forward to hearing from others. Don't hesitate to ask questions!
Edited by member 30 Mar 2016 at 21:31
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