Monday 3 July 2023

Stress, Anger and a difficult decision to make - Rog T's Cancer Blog

"How are you Rog?"

"I'm fine".

That is the conversation you will have with me if you stop me in M&S. Why? Because you probably don't want to hear the truth and I probably don't want to waste your time. How would it go if I was honest and you were prepared to listen?

"How are you Rog?"

"I'm a complete fucking mess and I'm really f@@cking angry. I have what for me is an almost impossible decision and I think that the way the NHS is set up does not give me the proper opportunity to make a truly informed decision. I have no issue at all with the quality of care, but I have a massive choice to make and I feel that the way the information is being presented to me is not really giving me the chance to be certain." 

So why would I say that? Why am I angry?  Well I saw the oncology team at the Royal Free a couple of weeks ago and I saw the surgical team at UCLH last Friday. I have to say that the Oncology team at The Royal Free gave me 100% confidence and answered my questions in a manner that I felt gave me a good feeling as to the pro's and cons, no issue there. The surgeon I saw at UCLH , who is one of the leading surgeons in the world, and on a technical level is the person I want to do an op if I have one, felt almost like a double glazing salesman, trying to convince me that I'd be insane to consider anything else other than surgery.

I felt it was pretty clear that the surgeon immediately decided that I was a bit of a moron (probably rightly when it comes to treating cancer, he's a world expert, I run a music studio and have two rather poor A Levels). In fairness to him, he's not selling double glazing, he's trying to save my life and he clearly believes that surgery is the only sensible option, but to say that he didn't seem to understand my concerns about surgery and issues with surgery is a wild understatement.

So what are my concerns? Well I am 60 years old and if I have surgery, it will mean I am functionally impotent. It may be that I can get an erection with viagra or a pump, but as best I understand, there will be little, if no sensation. As I had HifU in 2016, he informed me that it was virtually impossible to 'spare the nerve endings', as there is significant scar tissue. If I have radiotherapy, there is around a 70% chance I will eventually have some normal erectile function. My surgeon explained that the downside was that there is a 1 in 5 chance that the cancer will return and then I will have to have brutal surgery and I will not only be impotent, but also completely incontinent. He said that this would be far worse than not being able to have spontanious sex ever again. To him, yes this is a no brainer, but it isn't to me.

The more I think about it, the more the way the NHS manages these issues infuriates me. I do not want to speak to different teams at different times. I want a conference call, with all of the disciplines, so I can hear each side and be able to challenge them with both sides giving answers. Clearly surgeons think surgery is better and oncologists think their path is better (although the oncologists advised me to have surgey or hifu in 2016 and they didn't this time). In truth, my surgeon is right, he is better qualified to tell me the outcomes, but so are the oncology team and what they told me, if not contradicting each other, are laying out two scenarios which have very different pros and cons. Having both on the same call would mean I could actually get a more balanced view.

After the call, in the evening I had a curry with a mate who had surgery in 2018. He said it worked for him. He cannot get an erection but he's fine with that. He was pleased to have got it done in one go. Radiotherapy is a 7 month programme, which for him seemed to be a path likely to cause significant stress. I realised we value different things. For me, the concept that at some distant point in the future I may, once again, have some sort of sex life, is a hope to cling to.

I wonder how many men die for fear of losing sexual function. It is clear to me that the medical community do not properly appreciate this. If I'd had surgery, as the surgical team recommended in 2016, I'd most probably be in the same situation as my friend, albiet two years further down the monastic route. As it is, I had seven years in which I lead a full life on my terms. My surgeon intimated I was mad having HiFu in the first place as this was why I was now in this position, but I see it as having gained seven years worth of a full life. I was reminded of when my mother was advised to stop drinking and go on wharfarin in 2007. She said that she was 82 and would rather enjoy what time she had left. 

I think I am a tad unusual in that I am not in the least bit scared of death. I am more scared of a life that is bland and dull. I'd rather take my chances and live with my choices. My friend who had the op told me one of his mates, who had a normal prostate removal (mine is more difficult due to HiFU), has been incontinent since, there are no guarantees that I wouldn't be in the same position. From the surgical perspective, if I am alive in five years time with no re-occurance, it's job done. 

I have come to the conclusion that Prostate cancer will remain a major killer of men until there is an option where your ability to have sex is unaffected. I asked the surgeon what would happen if I simply ignored the situation. He said that it would be 2-5 years before I saw any symptoms, by which time it would have invaded my bones and I may have another 3-7 years, depending. He seemed horrified that I'd asked the question. It is an option but it helps me make an informed decision. It is not an option I will consider, I just wanted to know. I am swinging strongly towards radiotherapy but I am still thinking about it and I am cross as I cannot get all of my questions answered in one hit. It all adds to the stress and anxiety. The NHS needs to get it's act together and get these teams working together, speaking to patients together and supporting them. Telling patients that difficult decisions are 'no brainers' does not help.

I know reading this is pretty hard for some. I know some will want to ring and chat and offer support. To be honest, I am not really in the mood to discuss too much with anyone. In fact, I am actually OK on one level. I am getting on with all the things I have to and I am managing my anger and anxiety. I'm getting everything in order. I am finishing off the False Dots album and working towards our launch and gigs in September and November. As to the other stuff, I am lucky. I have a strong partner who is supporting me and who is not judging me. I am one lucky S-O-A-B in many ways.

However this washes out, it won't be great. It will be the lesser of two evils. Whatever choice, no matter how moronic others may judge it, I will live by it. As with the HiFU decision. My surgeon may think I was nuts, but I am happy I did it. In life nothing is set in stone. 

--- About this feature
For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.  For those of you who aren't, here's a quick summary. I'm 60 years old and in October 2011 I  had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring.  In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0,  February 2015 it was  up to 5.5  and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October  which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A  PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. My two latest ones in February 2022 was 6.7 and October 2022 was 6.6 was stable. My MRI in March 2022 showed 'a change' so I am now awaiting a biopsy. I had a PSA test in late March which also showed a marked increase to 10.3. I had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSa test in June saw a rise to 12. I've seen the  surgical and oncology team and am making my mind up as to what I choose. 

Things are not great but they are not dire either. 

 I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it (hopefully) won't be from Prostate cancer. Got the picture?

1 comment:

Anonymous said...

This is very raw and incredible read. 40 over 40 men will suffer erectile disfunction. 1 in 2 will get cancer and many of us will be lucky enough to get a clear outcome. However the next level is what you have yet to experience, the unknown live of grandchildren for example. It's never going to be easy when you don't know what you may miss.