When does the head stop spinning

User

Posted 10 Oct 2023 at 11:21

Hi, I'm new member here. I'm 57 years old and decided as my Dad had Prostate Cancer for 15 years and my Grandfather died from it in the 1970s, to take myself to my GP for a PSA despite having no symptoms.

Less than 3 months, 1 MRI and 1 Biopsy later with a PSA of 8.2 and a Gleason score of 7 (3+4) I'm now waiting for consultation to help me decide which path to chose (ie which side effects I'm less terrified of)

Having spent many miserable hours reading through Sex Life Chats on here I'm still no more ready to making that choice.

First couple of probably many stupid newby questions:-

Q)Are there any men who go through PR without any (or much) ED/Leakage/Shrinkage?

Q) What are people's thoughts on HIFU- cant see much about it.

Q)When does your head stop spinning enough to allow yourself to trust your shocked and confused state of mind to make this choice?

Thanks for reading this rambling mess of an introduction and much as I hate having to be here I'm already very grateful that there is such a place as 'here' for me to be. Thanks!

Edited by member 11 Oct 2023 at 10:35 | Reason: Grammar

User

Posted 11 Oct 2023 at 21:15

Originally Posted by: Online Community Member

Q)Are there any men who go through PR without any (or much) ED/Leakage/Shrinkage?

Yes there are, I am one one of those; however as Dave says, you don't hear so much from us.

Briefly:

Commencing early January I went through the high PSA -> MRI -> Biopsy -> Gleason 7 (3+4) cycle, resulting in a nerve sparing RP late June.

Catheter was removed after 11 days, mainly continent immediately, apart from sneezing, sudden moves etc., within a few weeks totally contingent.

Every one of us will go through the head spinning cycle of uncertainty and anxiety, each of us having different differing fears and doubts.

I was offered the three main options and I quickly concluded RP was the one for me, accepting all of the risks that I had been fully informed about.

Three months on from surgery I am very grateful that the last 9 months have resulted in an outcome that by all current indicators, suggest I'm "done with PCA".

User

Posted 10 Oct 2023 at 22:50

ADC66

I’m a touch older than you and was diagnosed last October when I was 63. My Gleason score was 4+4, with the cancer being contained within the prostate capsule.

My consultant gave me no options - his view was to remove the prostate and I underwent RARP on 23rd December last year. I didn’t challenge his view as he was very experienced in this field.

Post-operation, the catheter was a nuisance rather than being painful and was removed after 12 days. I was fortunate that I was fairly continent, needing only two pads a day. Four weeks after that, with a lot of pelvic floor exercises, I was just about there. Now, it’s not an issue.

I think you’ll find ED is a side-effect of most, if not all, treatments. It’s one of those things we have to accept may improve but may remain. I was prescribed Sildenafil to get blood flowing in the right area, and 14 weeks after the operation was prescribed a vacuum pump. The allowed my wife and myself to enjoy intercourse, although she felt I had mor3 girth than before the operation. The Sildenafil is now starting to have an effect and I’m not far of having a useable erection.

There are a lot of threads about recovery after the operation which are worth looking at.

My advice would be to be guided by your consultant. Removal sounds frightening but others have found that the cancer has returned after hormone treatment, and removal becomes more difficult.

I’m no expert in this subject, but hope my experience may help.

User

Posted 10 Oct 2023 at 23:59

Probably a lot more men than you think come out of the treatment relatively unscathed. The nature of a forum like this is that people post because they have problems. About 45,000 per year are diagnosed with prostate cancer, a few hundred post here. Yes some are suffering in silence but an awful lot of those 45,000 are just quietly getting treated and recovering reasonably well.

Hifu is only suitable for a few people hence you won't find much about it. If you are suitable then it is probably the treatment with the least side effects, so worth enquiring about.

Your mind is always too confused to make a rational decision. If you are lucky, your cancer will only be treatable with one treatment option, that was the case for me, so I did not have to make a decision.

Most people who get a treatment choice make an emotional decision about a treatment choice straight away, they then look at how to justify it and make it look like a rational choice. It doesn't really make a difference how you make the choice, if you are offered a choice it is because either has an equal chance of success.

Dave

User

Posted 11 Oct 2023 at 14:19

ADC66

I’m older than you (71) but share your Gleason score and like you have just started the journey 4 months ago. I have just posted my HIFU journey on this forum so am happy to share my thoughts so far.

It has taken these 4 months to get from starting the 2 week fast track to final agreeing to have HIFU and the biggest barrier will be your own suitability. The surgeon will probably prefer a single lesion in the posterior and a small sized prostate itself so that the ablation from the ultrasound device in your rectum can work and reach the lesion. (I have a second lesion in the anterior part as well as the index lesion in the posterior, both in the same lobe, but he is happy to tackle both at the same time.) The lesion should be in the peripheral zone (where most lesions, but not all, are found). The cancer should be contained in the prostate.

Once you find you are suitable for HIFU, the next barrier is with the genuine but sometimes wary views of the traditional surgeon and/or oncologist. In my case they were both dismissive of HIFU, talked about lack of long term data and the probable need to have secondary HIFU if more cancer was found. I feel that my quality of life is paramount as I have no symptoms now, neither do I have incontinence or ED, so I do not want to choose a treatment that gives me a worse outcome. If I have a new as yet unseen cancer that appears in 3-4 years, then I will look for appropriate treatments then.

You may find it difficult to get HIFU on NHS. I explored this and can access a nearby city with a hospital which does offer NHS HIFU. However the time frame is about 5 1/2 months from now through the NHS, or 4-5 weeks privately and for me I felt that rainy day money in the piggy bank was worth spending now.

I offer no advice other than to continue to seek the excellent views on this forum of those who have had to make decisions like yours. If you are interested in HIFU, I would commend listening to a podcast called “On Focus” (I have no links with this, neither am I using the clinic that produces it) and also other prostate cancer podcasts. Watch YouTube clips too but be wary of the advertising hype in many of the colonial sites!

Best wishes,

Simon

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User

Posted 10 Oct 2023 at 22:50

ADC66

I’m a touch older than you and was diagnosed last October when I was 63. My Gleason score was 4+4, with the cancer being contained within the prostate capsule.

My consultant gave me no options - his view was to remove the prostate and I underwent RARP on 23rd December last year. I didn’t challenge his view as he was very experienced in this field.

There are a lot of threads about recovery after the operation which are worth looking at.

My advice would be to be guided by your consultant. Removal sounds frightening but others have found that the cancer has returned after hormone treatment, and removal becomes more difficult.

I’m no expert in this subject, but hope my experience may help.

User

Posted 10 Oct 2023 at 23:59

Hifu is only suitable for a few people hence you won't find much about it. If you are suitable then it is probably the treatment with the least side effects, so worth enquiring about.

Dave

User

Posted 11 Oct 2023 at 14:19

ADC66

Best wishes,

Simon

User

Posted 11 Oct 2023 at 21:15

Originally Posted by: Online Community Member

Q)Are there any men who go through PR without any (or much) ED/Leakage/Shrinkage?

Yes there are, I am one one of those; however as Dave says, you don't hear so much from us.

Briefly:

Commencing early January I went through the high PSA -> MRI -> Biopsy -> Gleason 7 (3+4) cycle, resulting in a nerve sparing RP late June.

Catheter was removed after 11 days, mainly continent immediately, apart from sneezing, sudden moves etc., within a few weeks totally contingent.

Every one of us will go through the head spinning cycle of uncertainty and anxiety, each of us having different differing fears and doubts.

I was offered the three main options and I quickly concluded RP was the one for me, accepting all of the risks that I had been fully informed about.

Three months on from surgery I am very grateful that the last 9 months have resulted in an outcome that by all current indicators, suggest I'm "done with PCA".

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