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This is where you can find out about all the amazing things going on in the Online Community. It's where you'll find news about events and awareness months; ways to get involved with Macmillan and up-to-date campaigning news from Macmillan HQ.
March is Prostate Cancer Awareness Month, so to mark it Jim has written about his experience of being diagnosed, and the treatments that followed.
Jim is a 61 year-old retired train driver from London. At the end of 2013 he was diagnosed with prostate cancer. Since then he's had surgery, radiotherapy, hormone therapy and chemotherapy.
Until I was diagnosed with prostate cancer, Prostate Cancer Awareness Month wasn't something that I paid much attention to. If only I had. Back then, like so many men, I thought it was something that happened to other people, which you tend to do when you're not directly affected yourself.
Over the last few years, I've heard many different personal stories about prostate cancer and, despite each one being unique in its own way, there's a recurring theme - most of us knew nothing about this disease until we got it and had no idea what symptoms to look out for, which is why I think an awareness month is so essential. Anything that helps prevent unnecessary suffering and early deaths is always worthwhile.
My ears prick up when I hear those uplifting tales of celebrities who announce that their prostate cancer has been cured and I daresay there'll be a few more this month, but they're not the whole story. A cure is possible when it's found and treated early and is marvellous, but there's a danger that reports of cured celebrities just feed the myth that this type of cancer is somehow not as bad and not as life-changing as others. For some that might be the case, but for others prostate cancer can be devastating in its life-changing effects, which I've discovered for myself. It's true that even when prostate cancer is not found early it can still be controlled for years, but it can also have a bad prognosis and the men in that position should not be forgotten.
Before prostate cancer was mentioned to me as a possible explanation for several things I had going wrong with me, I was ignorant on the subject. All I knew about my reproductive system and waterworks was what I could see on the outside, and my little bit of knowledge didn't really extend beyond the pleasure it could give me (and others, I hope!). I didn't realise how important it was to know and understand what lay beyond my dangly bits until I got ill and it was too late. Then, having been told that something called the PSA level in my blood was higher than it should have been for a man of my age, I went scouring the internet for information. That was five years ago, so my memory is a bit hazy, but I eventually ended up on the Prostate Cancer UK website, and found out that PSA stood for Prostate Specific Antigen and the high level could mean I had one of three things: prostate cancer or a non-cancerous enlarged prostate or something called prostatitis, an infection, or inflammation of the prostate. As things turned out, I had all three. The PSA test wasn't a foolproof way of determining if I had prostate cancer because there wasn't such a test and there still isn't now, but it's the best indicator we've got and it's worth finding out about, especially if you have a close male relative who's got (or who had) prostate cancer, if you're of Afro Caribbean origin, or any man from the age of 50 upwards.
It's hard to believe that when I was first told my PSA was high, at the age of 57, I had only a vague idea of what a prostate was, what it was for, and where it was located in my body. I know now that it's one of the most crucial inside parts of the male anatomy, about the size of a walnut, and sits just under the bladder. Not only does it help to stop us from peeing ourselves but, along with the nerve bundles attached, it's an integral component in our sex lives. While our testicles produce sperm, our prostates produce the semen that mixes with it. The prostate also helps to give us that feeling of pleasure during orgasm, when it contracts and pushes the ejaculate out. No prostate = no ejaculation and, if the nerves are affected, no orgasm either. I can't believe how I took something so important so much for granted.
My 19 months of hospital experiences before I was diagnosed were not ideal. In fact, they were a disgrace, with one doctor telling me I was too young to have prostate cancer, and another saying that even if it was cancer, it was 'only prostate cancer'. As I knew so little about it, I was unable to challenge the rubbish I was being told. I got steadily worse and my pain and discomfort increased. Two lots of sepsis, two lots of biopsies and several doctors later, in December 2013 I was finally told I had prostate cancer. That came as a shock but was a relief, too. A relief because I figured that at last I'd get something done to make me feel better.
Since then my care has drastically improved but I've been on the cancer rollercoaster, and have had several treatments - first surgery, and then radiotherapy, both of which were described as cures, then more radiotherapy, hormone therapy and chemotherapy, which were no longer aiming to cure but were now aiming to control my cancer.
I finished the chemo in November 2016. I found the side effects it caused to be in a different league compared to the side effects from the treatments I'd previously had. It was gruelling and relentless but I've come through it and currently feel the best I have for years, and my PSA level is currently the lowest it's ever been. Not a cure, unfortunately - still a few more ups and downs on the rollercoaster to endure - but hopefully it's given me more time than I would have had without it. With luck, that extra time will make sure I'm around when a cure is found.
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Great article! Well done for sharing a very personal experience. You have already touched one person and I know there will be more. I remember when my husband was diagnosed.....
Some great advice we received: record your doctor and oncologist appointments on your smart phone! We have played them back for help and information and not least once to settle an argument......! It helps when you have chemo brain, shell shock or just a forgetful moment!
Thanks for this interesting reviling post I was diagnosed with prostate cancer at the start of November 2016 and at the start of this troubling period of my life I was more worried about my family than myself.
I had surgery to remove my prostate in February and I have had some complications in the last five weeks but I'm slowly getting there, I seen my surgeon last week and my final results are T3BN1 which means that the cancer has broken the prostate capsule locally and my seminal vascules also show signs of cancer also four out of sixteen lymph nodes are positive for cancer.
So my rollercoaster ride continues I'm due to start hormone therapy and radiotherapy very soon and hopefully this will able me to get back to work.
I'm celebrating my 50 birthday tomorrow and I'm hoping for many more years with my lovely family.
To be continued....
Thanks for sharing your experiences my OH is now at the end of his HT treatment we have an appt next Thursday to see our consultant to take us through what happens next but its hard for my OH not to imagine that every twinge or pain is another cancer site not yet discovered in him so another part of the cancer rollercoaster starts for us but am hopeful we will be together for many a long year yet. Blueyonder.
Thanks for responding to my guest blog post.
I'm sorry to hear you're also going through all this and that you've had some complications since your surgery. It's all supposed to go smoothly but it didn't with me, either. A couple of weeks after surgery, when the catheter came out, was when I got my 3rd lot of sepsis so I spent another week in hospital.
My post surgery Staging results were T3b N1 M0, which seem to be the same as yours. The M0 in mine refers to the result of my bone scan. Do you also know your post surgery Gleason score and what your PSA was just before the surgery?
Not as many people click on the Blogs section of the Online Community as on the Groups section so they're won't be as many who will read our comments here as they would in the main Prostate Cancer group. There are groups for different cancers and other groups, too, that focus on things such as Chemotherapy and Radiotherapy. If you haven't already found the Prostate group click here and it'll take you straight to it.
It is a very well used group - I'm not sure if that's a good or a bad thing. If you're new to using online forums and need any help you can also click here to go to the Help Page.
All the best to you, and Happy Birthday, too.
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