I just wanted to post something here for those that have just been diagnosed. I'm the wife of a man with prostate cancer and I can only describe what we've been through in the last few months as an "ordeal". I feel like we were swept up completely by surprise by a hurricane, which took us up inside for 5 months and has just spat us out. Here are my thoughts from the eye of the storm and our story...
My OH is 56 and completely fit and healthy. He had absolutely no symptoms of prostate cancer whatsoever. It was only when a locum doctor suggested he have a PSA test that this whole nightmare started. At first my OH didn't want one as he'd read that raised levels of PSA can often cause worry and he worries a bit anyway so he politely told the doc "no thanks". However, after a few months of worrying 🤣 he thought he should probably have one. It was strange because as I say, he had no symptoms at all. It's one of those moments in life that seem almost celestial and in hindsight one I am extremely grateful for.
1st PSA comes back in June 2021 from the docs at 4.6
2nd PSA comes back in July 2021 at 4.61
MRI scan arranged for start of September. At that point, because the PSA was only slightly raised we thought it was all routine and everything was OK.
MRI showed PI-RADS 5. At this point we had no idea what PI-RADS 5 even meant! It was just on the letter and we presumed it was just some medical terminology. It was only when my husband received a letter telling him to go for a biopsy that it all became very "real". Of course he didn't want to go for one and hated the thought of someone sticking a needle down there and he was scared of the potential impact on erectile function etc. So he thought he wasn't going to have one. It was only when I rang the nurses on the Specialist PC Helpline here that things became clear for us. The helpline nurse asked us what the letter said about the scan results and as soon as we mentioned "PI-RADS 5" she said that cancer was "highly likely". That was the watershed moment for us, the point when life for the next few months was completely turned upside down.
We both dealt with it very differently. I was like a wailing banshee, crying around the house, beside myself and my husband went quiet. That period of time was one of the worst in my life. It was the not knowing which was the hardest part. We had no idea how extensive or aggressive the cancer was. We have a little boy and the thought of him without a daddy made me feel sick every day. I was beside myself every day. We couldn't really look at treatment options because he hadn't been fully diagnosed, so we had to wait for the biopsy... for 5 long weeks. The day before the biopsy was due, we received a phone call to tell us that the biopsy machine had broken so the biopsy would be delayed. At this point I lost the plot and rang around several different places to make sure the biopsy could go ahead. Even our GP told us it's the people that shout loud enough that makes stuff get done. He finally got a biopsy a week later, when they cobbled together two different machines to carry out the template biopsy.
According to the NHS Faster Diagnosis Standard, Cancer diagnosis from urgent referral to diagnosis should be no longer than 28 days. By the time my husband was diagnosed it had been 63 days. He was diagnosed with Gleason 4 + 3 and given two treatment options: Radiotherapy or surgery, both with curative intent.
In many ways this is what we had been waiting for and strangely it was a relief to receive the news we had been suspecting for the last two months. Now we could finally get on with doing something about it! My husband dealt with the news by sitting by the fire and drinking red wine. I dealt with it by researching like I have never researched before! I read scholarly articles, looked into the best surgeons, analysed their data, looked at the data by Trust, compared outcomes etc. It was exhausting! I looked into the Neurosafe Procedure, the Retzius Sparing Technique, the Martini Clinic in Germany. I looked into NHS vs private treatment. I'm not a supporter of the private healthcare system but I was desperate and wanted my husband to have the best treatment. I think "desperate" is the best word to describe how I was feeling at the time. This forum was a great source of support for me along the way. Other members came forward to answer my questions, despite them undoubtedly being posted on here hundreds of times before! Sorry about that! 🤣 All the people who responded were great and gave me really good advice and tips, all the better because they had actually lived it and been through it themselves. I felt like I wasn't alone. My husband knows that I am very good at researching and left it all to me. He was happy with this because he didn't want to stress himself out too much, so it allowed me to throw all my energies into research and feedback to him with the important bits so he could make his decision.
From the very start he said he didn't want Radiotherapy as he didn't like the idea of putting hormones and chemicals in his body. Also the timing wouldn't have worked well for him with his work and he didn't want to have to go for treatment every day for a prolonged period. So that bit was relatively easy for us. Choosing a surgeon wasn't. That was probably the biggest dilemma for us. We're based in the North West and our personal experience of our Trust had not been great. Not to mention the 63 day wait for diagnosis, during that time, a damning report was published on the Trust's Urology Department which said it had let down more than 520 patients who had received "actual or potential harm". So we knew we didn't want surgery within our local trust. It was a real dilemma where to ask to be referred. (In case you don't know you can ask to be treated by any Trust within the NHS under the Patient Choice scheme.) A lot of people on the forum spoke about "theprofessorwhocannotbenamed" and there was a big emphasis on the bigger high volume surgeons in London, many of them who also have private practice. We didn't know whether to save up, get money from family and throw all our money and go private in London. We didn't know whether to ask to be referred on the NHS to somewhere like The Royal Marsden. Again, the word is "desperate". London is a 5 hour drive away from us so it really was a dilemma and would have involved staying down there for around a week either side of the operation, then there was the thought of the post op journey back. In the end, we decided to stay up north and get treatment by a high volume surgeon at Christies, which is about an hour and a half away from where we live.
My husband was seen by the surgeon on 11 November 2021. He had RARP surgery on 8 Dec 2021.
He had some complications post op which saw him go into retention, but on the whole he's been great. No incontinence whatsoever, still early days on the ED front. Scars healing nicely, up and about after 5 days and now 6 weeks post op doing really well.
He just had his first post op appointment and histology yesterday and it's good news! The surgeon managed to remove all the cancer with negative margins! Gleason was 3 + 4 (or 4 + 3) he said it could be switched around. 50% of the tumour (which was around 2cm wide) was Grade 4. Obviously my husband still has to have further check ups etc but it feels a bit like we're out the eye of the storm and out the other side!
I feel so sorry for anyone on this journey, having to go through what we did. I know first hand how awful it is.
Knowing what I know now, this is the advice I'd give to anyone who has just been diagnosed/awaiting diagnosis...
1. You're stronger than you think
2. You will get through this and this feeling is not forever
3. The bit between scan/biopsy and diagnosis is the hardest part
4. In terms of treatment, there are no right answers, there is no "best" surgeon. Everyone will have a pathway that is right for them.
5. Do your research and if you're unsure, ask people on the forum for real life experience
6. Don't be frightened to stick up for yourself or ask questions. Don't just accept what you are offered if you want something else.
I hope this post might be useful for anyone on here newly diagnosed and not being able to see the wood for the trees. It IS a living hell when you get diagnosed with Prostate Cancer, for the man and also their partner. But you can and you will get through it.
Much love to all of you out there! If anyone wants to PM me for advice then please feel free. I am far from an expert but if I can help in any way, like the other members of this forum have helped me, I would be pleased to do so.
Thank you to everyone on this forum for creating such a positive supportive community 🙏