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Getting over the shock of diagnosis

User
Posted 23 Nov 2024 at 12:13

I wish I wasn't on this forum, but having had a positive diagnosis of prostate cancer only two days ago, I'm trying to decide what treatment would be the best option. A GP routine check found a PSA of 22, swiftly followed by the indignity of a digital examination and two MRI scans (one nuclear)  and biopsy found cancer in the left side of the prostate. This was all a shock as I felt (and still feel) completely well. There is no history in my family  ( but I have told my son to get tested).

The consultant told be that I have 3 options: radiology, surgery or do nothing . Doing nothing is not a viable option; however, neither of the other options are pleasant, to say the least. 

I would welcome any advice/thoughts/ experiences.

 Thanks

Mike

User
Posted 23 Nov 2024 at 16:34

Are you sure doing nothing is not a viable option? If the consultant is offering it I would presume it is. By day 3 of a diagnosis everyone thinks the only viable option is surgery, at day 3 no one thinks shooting cancer with a ray gun is going to cure it.

What you need to do is keep your mind open to all options. Read a lot of posts on here to get a feel of what life can be like after a cancer diagnosis. Realise that this forum doesn't have posts from the vast majority of people who were diagnosed treated and cured (about 70% of people) people without problems are unlikely to post here.

Once you have read a lot of stories on here, think about your own personality your own life and your own family and how each possible treatment may effect you. Your path through this disease will not follow the exact path of anyone else's disease, it just opens up your thinking as to what might happen, not what will happen.

At the moment don't narrow down your options. When you have your next meeting with a consultant you may have read about treatments offered on here which are not being offered to you, they may not be offered for valid medical reasons, but it could be just what is available in your health trust. Ask the oncologist about any treatment you are interested in, if they rule it out on medical reasons, move on, they almost certainly know best. Hopefully by the end of the meeting you will know the consultants thoughts, which may still be that all options are open. You will also know your own thoughts on treatment and possible side effects and then be in a better position to choose your treatment.

Dave

User
Posted 23 Nov 2024 at 16:16

My experience may help but, of course, we are all differentI. I was 72, very fit with no health or weight issues and had a choice of surgery or radiation. It was probably the most difficult decision I had to make in my life. I chose surgery because: the cancer was well contained with good negative margin and the thought of getting rid of the cancerous gland appealed to me. Also the consultant surgeon was friendly, confident, frank about side effects and was very experienced. The oncologist did not inspire any confidence. Although we have no regrets, I do suffer from erectile dysfunction (my age is probably the main reason) and suffer from mild incontinence. I am now 85, and free of cancer, so far! We are still enjoying our lives, including sex. Nerve sparing surgery often, particularly for older men, promises more than it can deliver. Majority of men regain their continence immediately but some may take weeks and months. My advice is take time and lots of advice and once you have made the choice don't look back. As with me, at your age ED is a possibility but if that happens there are many ways of re-establishing your sex life.  I hope this helps and good luck.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 23 Nov 2024 at 16:55

If we start considering surgery, some questions for your surgeon...

What are the chances of the procedure being nerve sparing (giving a chance of natural erections afterwards)?
What are the chances of good continence afterwards?

These questions can be answered based on the location of the cancer and your anatomy (things like length of membraneous urethra).

Does your surgeon do Retzius Sparing? (gives faster recovery of continence, but no difference longer-term)
Do you consider yourself to be relatively fit and not obese?

For radiotherapy...

Given that they offered you Active Surveillance, you are probably a candidate for any of the radiotherapy treatments, so ask what they offer:

The most common would be 20 sessions (weekdays over 4 weeks), possibly with short duration hormone therapy.
You are probably eligible for seed brachytherapy (unless prostate too large, over 55cc). That's a single procedure where 60-100 tiny radioactive seeds are placed in the prostate, a bit like the biopsy but significantly  less uncomfortable. This is sometimes done with hormone therapy. The seeds generate radiation for about 200 days before they wear out. They stay in for life, but are benign after 200 days. For the first 60 days or so, you can't have children or pets or pregnant women on your lap.
A new treatment as a result of the successful PACE-B trial is 5 sessions of SABR (a form of higher power external beam radiotherapy) delivered daily (usually split over a weekend) or alternate days, which is given without hormone therapy. The hospitals which were involved in the trial now offer this and NHS England has said it will be commissioned quickly at all hospitals which can do prostate SABR (which isn't all hospitals), but last I heard about 6 weeks ago, NHS England hadn't yet sent out the commissioning for this.
If you are not offered all these options, that's probably because your hospital doesn't do them all. Within England, you can be referred to any other hospital in England. This might be why you weren't offered a focal therapy too (although I'm not a big fan).

Most people consider radiotherapy as an easier option, but things like a long travel time for daily treatments can easily swing this, and any need for a long period on hormone therapy (not applicable for you). Radiotherapy is less likely to cause urinary incontinence, and possibly less likely to cause erectile dysfunction (although the data on that isn't reliable IMHO). It often does cause some short term bowel issues during or after treatment, and it has a small risk of causing long term bowel issues but with modern radiotherapy, the chances of those being serious are very low.

There's no one answer. You can have two people with identical diagnosis, age, etc, but other life factors would make them select different treatments.

User
Posted 23 Nov 2024 at 19:08

At 71, and if you are in good health Surgery is an option, but as indicated research your Surgeon to be sure he has done literally hundreds of the procedure. Also a consideration between Surgery and Radiation, a Surgery window will likely close by 75, or sooner if other health issues arise. There is no real age window on Radiation unless your health is already deteriorating and you are quite elderly.

User
Posted 24 Nov 2024 at 11:14

It might be worth asking when the radiotherapy centre at Milton Keynes opens; it must be soon. It's a satellite centre run from Oxford.

You might only need 5 treatments, plus a planning scan.

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User
Posted 23 Nov 2024 at 16:16

My experience may help but, of course, we are all differentI. I was 72, very fit with no health or weight issues and had a choice of surgery or radiation. It was probably the most difficult decision I had to make in my life. I chose surgery because: the cancer was well contained with good negative margin and the thought of getting rid of the cancerous gland appealed to me. Also the consultant surgeon was friendly, confident, frank about side effects and was very experienced. The oncologist did not inspire any confidence. Although we have no regrets, I do suffer from erectile dysfunction (my age is probably the main reason) and suffer from mild incontinence. I am now 85, and free of cancer, so far! We are still enjoying our lives, including sex. Nerve sparing surgery often, particularly for older men, promises more than it can deliver. Majority of men regain their continence immediately but some may take weeks and months. My advice is take time and lots of advice and once you have made the choice don't look back. As with me, at your age ED is a possibility but if that happens there are many ways of re-establishing your sex life.  I hope this helps and good luck.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 23 Nov 2024 at 16:33

Thanks for your very helpful repy. I've an oncologist appointment on Frifay 13 (not very auspicious!). I think we are on the same wavelength, but this is very new to me

Regrds

Mike

User
Posted 23 Nov 2024 at 16:34

Are you sure doing nothing is not a viable option? If the consultant is offering it I would presume it is. By day 3 of a diagnosis everyone thinks the only viable option is surgery, at day 3 no one thinks shooting cancer with a ray gun is going to cure it.

What you need to do is keep your mind open to all options. Read a lot of posts on here to get a feel of what life can be like after a cancer diagnosis. Realise that this forum doesn't have posts from the vast majority of people who were diagnosed treated and cured (about 70% of people) people without problems are unlikely to post here.

Once you have read a lot of stories on here, think about your own personality your own life and your own family and how each possible treatment may effect you. Your path through this disease will not follow the exact path of anyone else's disease, it just opens up your thinking as to what might happen, not what will happen.

At the moment don't narrow down your options. When you have your next meeting with a consultant you may have read about treatments offered on here which are not being offered to you, they may not be offered for valid medical reasons, but it could be just what is available in your health trust. Ask the oncologist about any treatment you are interested in, if they rule it out on medical reasons, move on, they almost certainly know best. Hopefully by the end of the meeting you will know the consultants thoughts, which may still be that all options are open. You will also know your own thoughts on treatment and possible side effects and then be in a better position to choose your treatment.

Dave

User
Posted 23 Nov 2024 at 16:55

If we start considering surgery, some questions for your surgeon...

What are the chances of the procedure being nerve sparing (giving a chance of natural erections afterwards)?
What are the chances of good continence afterwards?

These questions can be answered based on the location of the cancer and your anatomy (things like length of membraneous urethra).

Does your surgeon do Retzius Sparing? (gives faster recovery of continence, but no difference longer-term)
Do you consider yourself to be relatively fit and not obese?

For radiotherapy...

Given that they offered you Active Surveillance, you are probably a candidate for any of the radiotherapy treatments, so ask what they offer:

The most common would be 20 sessions (weekdays over 4 weeks), possibly with short duration hormone therapy.
You are probably eligible for seed brachytherapy (unless prostate too large, over 55cc). That's a single procedure where 60-100 tiny radioactive seeds are placed in the prostate, a bit like the biopsy but significantly  less uncomfortable. This is sometimes done with hormone therapy. The seeds generate radiation for about 200 days before they wear out. They stay in for life, but are benign after 200 days. For the first 60 days or so, you can't have children or pets or pregnant women on your lap.
A new treatment as a result of the successful PACE-B trial is 5 sessions of SABR (a form of higher power external beam radiotherapy) delivered daily (usually split over a weekend) or alternate days, which is given without hormone therapy. The hospitals which were involved in the trial now offer this and NHS England has said it will be commissioned quickly at all hospitals which can do prostate SABR (which isn't all hospitals), but last I heard about 6 weeks ago, NHS England hadn't yet sent out the commissioning for this.
If you are not offered all these options, that's probably because your hospital doesn't do them all. Within England, you can be referred to any other hospital in England. This might be why you weren't offered a focal therapy too (although I'm not a big fan).

Most people consider radiotherapy as an easier option, but things like a long travel time for daily treatments can easily swing this, and any need for a long period on hormone therapy (not applicable for you). Radiotherapy is less likely to cause urinary incontinence, and possibly less likely to cause erectile dysfunction (although the data on that isn't reliable IMHO). It often does cause some short term bowel issues during or after treatment, and it has a small risk of causing long term bowel issues but with modern radiotherapy, the chances of those being serious are very low.

There's no one answer. You can have two people with identical diagnosis, age, etc, but other life factors would make them select different treatments.

User
Posted 23 Nov 2024 at 19:08

At 71, and if you are in good health Surgery is an option, but as indicated research your Surgeon to be sure he has done literally hundreds of the procedure. Also a consideration between Surgery and Radiation, a Surgery window will likely close by 75, or sooner if other health issues arise. There is no real age window on Radiation unless your health is already deteriorating and you are quite elderly.

User
Posted 23 Nov 2024 at 19:51
My husband had the choice of AS RARP or RT, and chose radiotherapy he followed a low residue diet during treatment and had no issues, save for looser stool from mid way until a month after. Aside from fatigue he has so far not had any other side effects. The daily trip and trying to park was a pain but it’s a short term inconvenience.

Our initial reaction to the diagnosis was surgery, despite fears of ED and incontinence, just wanted it gone, but on listening to doctors and reading up on everything he decided on RT.

Wish you well whatever your choice.

User
Posted 24 Nov 2024 at 10:59

Thanks for your helpful reply. It's only a few days since I was given the diagnosis and I'm still coming to terms with everything. I already have an appointment with an oncologist on Friday 13th (an auspicious date) next month, which gives me time to put together a list of questions. I confess that daily trip from Bedford to Addenbrookes for RT doesn't apeal; however I note your comment.

User
Posted 24 Nov 2024 at 11:03

Thanks for your note.

I'm beginning to realise that there are no straightforward answers. However, it's really helpful to get a spectrum of experiences.

Cheers

Mike

User
Posted 24 Nov 2024 at 11:14

It might be worth asking when the radiotherapy centre at Milton Keynes opens; it must be soon. It's a satellite centre run from Oxford.

You might only need 5 treatments, plus a planning scan.

User
Posted 24 Nov 2024 at 11:44

Hi Mike.

Your PSA is quite high, but that can be caused or increased by non cancerous conditions. 

Have you got a cancer staging? Have you had a biopsy, and if so what were the results? Without those details it's hard to give any constructive advice. 

I can only assume, because you've been offered active surveillance, that your cancer is T2 (prostate confined) and that you are probably Gleason 6 (3+3) or 7 (3+4). 

I can't understand why you'd dismiss AS. It's wrong to think of it as 'doing nothing'. It's an option that monitors the disease. If the need arises you can opt for more radical treatment later.

I'm no expert, but I'd have though a PSA of 22 is high for AS, but as I said before that might be due to other prostate conditions, which is may be why you've been offered it.

Good luck mate.

 

Edited by member 24 Nov 2024 at 11:52  | Reason: Additional text

User
Posted 24 Nov 2024 at 12:28

Thanks for the heads-up. I'll do some research. MK is certainly easier to get to from home.

Mike

 
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