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Don't die of ignorance.

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Posted 31-01-2019 at 03:39 PM by DemolitionRed

Every 18 seconds a man in this country is diagnosed with prostate cancer. We think of it as an old man’s disease, but oncologists are seeing younger and younger men. Unfortunately, here in the UK, because there is no screening for prostate cancer, by the time men get diagnosed, its often advanced. Prostate cancer, when caught early, is curable but once it leaves the capsule and metastizes, its no longer considered curable.

In September of last year a good friend of ours died from advanced prostate cancer. He was 43 and left a wife and three children.

After our friends funeral, Steve decided that he should go and have an MOT but when he asked his GP for a PSA test (a possible cancer marker for prostate cancer) the doctor refused and told him that men under 50 are not tested unless they have very specific symptoms.

Steve then paid privately to have a PSA test done. It came back 17.5 which is high. The GP examined his prostate and said it felt fine. He ran some checks for infection and they came back clear and then he referred him for an MRI

The MRI showed up a shadow on the prostate and so he was fast tracked for biopsies. Out of 12 biopsies, 8 came back with adenocarcinoma. I don’t think I will ever forget the day when we sat in the urologist clinic being told he had locally advanced prostate cancer and that the road from here was going to be a tough one. He’d been cycling that morning and he sat there in that urologist room looking so handsome and fit. I couldn’t believe he’d had no symptoms but apparently men often don’t get symptoms and if they do, it tends to be a slowing of urine output which isn’t something many men would go to their GP’s about.

Anyway, we were told Steve would probably be refused surgery as it had possibly gone too far, so we were surprised when after the surgeon had looked at his notes, he invited him along for a consultation. He told him he was willing to do surgery but there would be no nerve sparing. This meant he would be impotent for the rest of his life and because there was no blood supply, Viagra and other things wouldn’t work. He was also told that because it was close to the bladder, the bladder muscles couldn’t be spared which meant incontinence for life.

He then went to see the oncologist who told him that after surgery he would need 74 fractions of RT and unfortunately because the prostate lays deep within the pelvis, his bowl was at risk and because of his young age, there was a risk of further cancers in the future from the RT lesions.

Steve became depressed and who can blame him. He was tempted to do nothing. None of the specialists had been able to tell him how long he’d last if he refused treatment and he was of the mind that if he was able to enjoy life to the full for a few years, surely that would be better than what his future looked like after all this treatment.
I was depressed too. Depressed that Steve was thinking about committing suicide and depressed because everything felt so hopeless. Every week his Mac nurse would call him and pressurize him to have the surgery and every week he'd say he was still thinking about it. I hate to admit it but we spent weeks arguing with each other. It was such a bleak time in our lives.

We started to research. We learnt as much about prostate cancer as we possibly could and we looked at different treatment methods used around the globe. We discovered that in Germany, Italy and some states in America, they do the same operation by robotic surgery (the same as here) but also have a pathologist in theatre with them doing intraoperative frozen section biopsies. This allows them to remove the cancer and only the cancer accurately without compromising the patient.

We found out that trials had been performed in this procedure here in the UK and those trials were paid for from public funds but as of yet, it was only available privately. We found a highly recommended private surgeon and went for a consultation. He looked through Steve’s tests and said that he thought he could save at least half the nerves and very likely some of the muscles around the bladder. The operation came at a high cost but we felt it was worth it.

On the 23rd January Steve had a radical prostatectomy. The surgeon called me immediately after surgery and told me that he’d managed to save all of the nerves and all of the muscles around the bladder. That Steve would get his potency back and there’s a 99% chance he will be fully continent. We are still waiting for the pathology on the removed lymph nodes and fingers crossed, if they are clean, there will be no radio therapy required.

To think, if he’d had this robotic surgery on the NHS, because they don’t do FSB, they would of taken everything.

Interestingly they do FSB for women with breast cancer. That’s why its seldom women in this day and age have to have radical mastectomies and are much more likely to only need lumpectomies and yet they deem this procedure too expensive for men with prostate cancer.

He’s making a very quick recovery, though because of the lymphadenectomy he has got a lot of swelling.

We will be campaigning for PC patients to have FSB and have already got the full support of our local MP, GP and two NHS surgeons. I guess that’s going to keep us busy for a while… watch this space.

Meanwhile guys, once you get into your forties, get your PSA levels checked yearly. They won’t do it for free, but it costs very little. Don’t die of ignorance. One in 8 men get prostate cancer and a quarter of those men will die from this disease. Just like ovarian cancer in women, prostate cancer is often a silent killer in men.
Think on, us women get smear tests on a regular basis and after the age of 50 get mammograms every so many years. You guys get nothing and its time you did but until you do, be vigilant, look out for yourself and get yourself checked.
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  1. Old Comment
    DemolitionRed's Avatar
    An update.

    So the surgery went well, the recovery has been tough but every day Steve gets stronger and more back to normal. All of the cancer from the prostate was removed with good margins.

    The bad news, they found two tumors on the lymph nodes closest to the prostate. They removed 16 in all and didn't find anything on the other 14. The surgeon has suggested that he may well of removed the final bits of cancer in those two lymph nodes but we won't know until Steve has his next PSA test in mid March and a consultation with his oncologist on April 2nd.

    If the PSA is at zero, then all the cancer is gone. If its raised, even slightly, it means its travelled somewhere else in his body. That's a whole new problem that I hope we don't have to face.
    Posted 04-03-2019 at 05:50 PM by DemolitionRed DemolitionRed is offline
  2. Old Comment
    DemolitionRed's Avatar
    An update.

    Steve got his first Prostate-Specific Antigen (PSA) test since surgery and he's in the clear. At last some good news

    Meanwhile we are still talking to the right people regarding FSB but I think Brexit is going to have to calm down before we can move forward with this.
    Posted 29-03-2019 at 04:23 PM by DemolitionRed DemolitionRed is offline

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