Been diagnosed oct 2020

User

Posted 29 Jan 2021 at 11:21

Hi,

I was diagnosed in Oct 2020 with suspected prostate cancer and after mri, biopsy results it was confirmed.

I had my 3rd consultant call today & been told my Gleason score is 9 & the cancer is in both sides of my prostate and spread to my vesicle area.

I was told I require radical treatment ASAP with 2 options available to me.

1. Radical Prostatectomy (robotic)

2. External beam Radiotherapy

I am 59yrs of age & married for 35yrs with 2 adult daughters. I've to research both options over the weekend & give my decision on Monday and also to start hormone treatment as early as next week.

Can anyone offer any advice on both treatments as this is all unfamiliar to me and I need to decide in a short time span.

Thanks

Paul

User

Posted 29 Jan 2021 at 12:31

Sorry that you find yourself here, Paul. RT and RP have very similar long-term success rates, so it's pretty much a question of which set of side-effects you consider the more bearable. I went down the RT/HT route (which was strongly recommended in my case) and found the whole treatment process pretty tolerable.

One factor to consider is how likely surgery is to cleanly remove all the cancer. If there is evidence of spread, unfortunately a high proportion of surgical cases do require follow-up RT and then you're stuck with both sets of side-effects of course, so it might be better to have gone with the RT in the first place?

No easy answers, unfortunately.

Very best wishes,

Chris

User

Posted 29 Jan 2021 at 12:45

Thanks Chris,

I value ur advice as I'm still a bit numb with the diagnosis overall. I just needed some opinions to help me decide over the weekend.

Really appreciate your post 👍

User

Posted 29 Jan 2021 at 13:41

Sorry you are here Paul.

Do you know whether the surgery would be nerve sparing?

As Chris posted if there is any spread you may have to have salvage RT after and that would be a big factor (for me) in deciding which route to take.

Good luck

User

Posted 29 Jan 2021 at 13:45

Please download the fully comprehensive information folder known as ‘The Toolkit’ from this website’s publications section.

Best of luck.

Cheers, John.

User

Posted 29 Jan 2021 at 14:47

Thank you gents,

I am researching both options in great detail today with my wife and there are side effects with both that I was unaware of. I had a callback to begin the hormone treatment on Monday to aid in limiting the spread of the cancer. Whilst I decide which route to take.

I had a medical bowel condition a few yrs back that might complicate things should I choose RT? I'll discuss this with the consultant on Monday.

Thanks for your posts 👍

User

Posted 29 Jan 2021 at 14:48

As John has said download the toolkit, it will help you decide.

Both treatments are reckoned to be equally effective, it is down to personal choice.

I would ask the surgeon how confident they are about removing all the cancer given there is SV involvement.

All the best,

Ido4

User

Posted 29 Jan 2021 at 14:56

Thanks Ido4 & John

Have downloaded it now

User

Posted 29 Jan 2021 at 16:17

Hi Paul,

You're Gleason 9, lesion both sides and spread to Vesicles.

I've always thought removing the prostate the best solution but after reading on here for a few years it seems RT is probably a better choice for many cases where there is spread beyond the prostate.

The surgeon can remove the vesicles but there is a risk the diagnosis isn't 100%. I was scanned on 3rd November and operated on 6 weeks later. The diagnosis was upgraded to Gleason 4+4 from 4+3. It might have got worse or it could be the biopsy was wrong, it only found 5% on one pin so not much to look at. The MRI said it was almost out of the prostate but post op the margin was clear.

RT can get to places surgery won't. I liken it to a cream I'm prescribed for badly sun damaged skin. It takes the visible lesion and tidies up the bits all round. A surgeon would take a margin but the cream finds things further out that are minor and removes them.

That said, you likely have got 3 months of hormone treatment when the lesion is still in your body but shrinking. I didn't like that thought. Nor the thought of taking hormones for months and a month of RT. Yet we must steel ourselves for what is the best regardless of anxieties.

Similarly with side effects, in my opinion anyway. The focus for me was to take the route with best chance of a cure and on that basis whether I'm incontinent or lose my erectile function comes way down the list. People suffer far worse. Some would disagree though.

I found surgery a good option, I'm still clear and I've never doubted my choice. Even if I doubted it I wouldn't regret it. The choice isn't easy but decide and keep strong with it.

Sorry to be philosophical but it all adds to the picture.

Good luck,
Peter

User

Posted 29 Jan 2021 at 16:31

Thanks Peter,

You have given me a lot to think about there which is very helpful information

Appreciated

Paul

User

Posted 29 Jan 2021 at 17:12

If it has taken them from October to now to diagnose and decide which treatments might be available to you, it is unacceptable to give you one weekend to make such a huge decision - nothing is going to change for the sake of a couple of extra weeks thinking time.

Have you been given the opportunity to speak to an oncologist and understand how RT might work and how successful it might be? If not, ask for a referral. Have you seen the urologist and discussed the % chance of the op being successful? Whether the nerves would be spared or removed? Whether s/he believes you might need salvage RT afterwards?

You can't make a proper decision with only half the story.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 Jan 2021 at 17:33

If I may add to what Lyn has written, as Lyn's opinion is highly regarded. I too was thinking it's taken a long time but thought it better to push it forward rather than put any delay into it. It's correct that a full picture is better taken by speaking to both a surgeon and an oncologist.

My own opinion is it depends how long it takes. In my case with a 4+3 near the edge I was keen on getting in and before Christmas. Covid could add to your delays. With a Gleason 9 outside the prostate I wouldn't want to be waiting. I knew what I wanted though as they gave no impression it was outside the prostate. I'd have had RT only if they said surgery wasn't on the table. In your case it's a bit more complicated but if it was me I believe I'd go with RT especially that they'll give you the injection quickly. Obviously I'm only another patient and don't really know.

You can theoretically have RT after surgery but not usually the other way round.

I don't know who you've been speaking to during diagnosis although it's not usually an oncologist. In general both surgeons and oncologists prefer their own treatments but might express some reservations you aren't keen on. I'd be wanting to know how confident the surgeon is of taking it all if I was seriously thinking of going that way. RT can hit wide areas but it puts a limit on future RT if you needed it. There's nothing straightforward.

User

Posted 29 Jan 2021 at 18:09

After my first post earlier today, I have since received several calls from the hospital to confirm I've got an appointment to speak with both RT & Surgery teams. I've now to start hormone tablets next Fri & then a further hormone injection on the following Monday. This is to halt testosterone & prevent the cancer from spreading whilst I speak to both departments. I'm sure the current covid situation will hold things up anyhow due to the unfortunate backlog of treatment for other cancer patients.

I have found all of the posts to be very helpful in the knowledge there are others to speak to.

Thanks to all

User

Posted 29 Jan 2021 at 18:22

Just to add, Paul, that if you have any medical questions, the PCUK nurses on the Freephone number at the top of the page give knowledgeable advice and are friendly and helpful.

Best wishes,

Chris

User

Posted 29 Jan 2021 at 22:56

Hi Paul,

Agree with Lyn, plus may I ask.

What side effects were you not aware of ?

What happened to communication in November? Did you not get told when results would be available and how you would be told ?

I appreciate the impact of COVID-19 , however the squeaky wheel gets the oil. As Chris has posted and others, also do try and get as quickly informed as possible. Take your time, just pose any questions .

Hope this helps

Gordon

User

Posted 29 Jan 2021 at 23:35

Hi Gordon

I got sent for blood tests early in Oct due to some problems that I had been having for some time but being the idiot I am, I ignored the symptoms & my PSA score came back at 19.8, I then had to wait a few weeks for a telephone consultation before being sent for an MRi scan.

After another few weeks I got my results from the scan & then a fortnight later went to hospital for a perennial biopsy.

The results then came back for that approx 10 days after.

This was when the aggressive cancer was confirmed & I was given my gleason score. The consultant explained that it was on both sides of my prostate & possibly spread slightly but I needed to get a bone scan & pelvic CT scan.

The results of which were told to me this morning along with both treatment options.

I'm pleased to say that both the bone & pelvis scan came back clear. I also think under the current covid pandemic that things have been quite quick all things considered. However, had I not been so stupid early on & ignored my symptoms then things may have been different.

Thanks for your post Gordon

Paul

User

Posted 30 Jan 2021 at 00:49

Ah okay, you were diagnosed today rather than last October?

Do not let anyone rush you into this decision which is going to change your life. You need time to speak to an oncologist as well as a surgeon, to understand the implications of each treatment but also the % chance of them being successful in your case. If they suspect that there is some slight spread, you need to know whether or not the operation would be nerve sparing.

It isn't going to burst out and rampage around your body in the space of a few weeks while you get together all the facts to make a good decision.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Jan 2021 at 01:31

Hi Paul

I had a RP over a year ago ,since than my life f....up for a Good Time...big time!!

I'm not a well educated guy,can't give you technical advice like others

But my case wasn't as dangerous as yours. From the Moment until I had the Surgery operation everyone from the nurses to the ordinary medical people they suggested me to have a RP surgery operation.

As Lyn says please take your time do your study (I did not, because of I have been taking medicines for my mental illness those medicines did not help me to think logical ways)

As Lyn says do not let them force you to do anything take your time.

Before my operation I did not know about symptoms apart erection dysfunction

That's all the info I was given and was told that after the operation I wasn't able to lift anything as heavy as even a pint of milk for one week.

Anyway here is the side effects of RP surgery operation. (Some)

Sex? For a decent sex life forget it for a long long time.maybe you will never have one.depends if they saved both nervous

Because of use of catheter at least about a week you might catch infections that might even cause very serious problems to your kidney

After the operation you will inject stuff into your arm,lap,shoulder for one month so plenty pains though of it.

Belly aches,abdomen pains groin pains you name it.

Some people says on here ohhh after 2 weeks of RP surgery I started running marathon, or cycling etc.

Do not believe any of them PLEASE!!they just wants to satisfy their ego and physically its impossible to do such exercises.

You feel like you will be a half man not full man.hope you know what I mean.

Before my RP surgery operation I never stepped into any hospital for internal pains. Now I do every week.last week in 24 hours I admitted twice to A&E

Before my surgery operation

I was able to go out and not to use bathrooms 4-5 hours easly

Had no pains at all 100%

Wasnt getting up night times for toilets.

Sex life was Good.

HERNIA!! most people whom had RP operation they had Hernia symptoms and surgery as well.

You will be a very angry person impatient man too for a while.

Anyway I dont wish to discourage you for anything but as Lynn says take your time and dont let them force you for anything.

Please read my other comments if you wish to from my posts etc.

Take care mate and hope you won't be treated the way I was .

Edited by member 30 Jan 2021 at 01:36 | Reason: I added more info

User

Posted 30 Jan 2021 at 01:44

Wow Rikki

That sounds horrendous! I'm so sorry you went through that experience especially during such a stressful time in your life.

I will take my time in making my decision after talking it over with my family & each of the doctors.

Keep well sir

Paul

User

Posted 30 Jan 2021 at 04:32

Hi Paul,

There are horror stories, as above, but if you click my profile you will see my experience has been far from it.

Your own case will have been reviewed by the Multi Disciplinary Team (MDT) of up to fifteen clinicians of various disciplines, who will make a suggestion as to your future treatment. Ultimately the choice of the way to go will be down to you.

When you see the oncologist, you will no doubt discuss how your previous bowel problem might impinge on the efficacy of RT, which has bowel trouble as a potential side effect.

I and two friends had surgery the same time as me around three years ago, and two of them had to have HT and RT afterwards, as the surgery didn’t remove all the cancer. They could have had RT in the first place. Not a scientific survey, with a cohort of three, but just sayin’. We are all fine now.

They say that medicine is advancing so fast that in years to come people will laugh at the idea of excising cancers, rather than other therapies. That day is not here yet, so best of luck with your choice of pathway.

Cheers, John.

User

Posted 30 Jan 2021 at 11:19

Originally Posted by: Online Community Member

Some people says on here ohhh after 2 weeks of RP surgery I started running marathon, or cycling etc.

Do not believe any of them PLEASE!!they just wants to satisfy their ego and physically its impossible to do such exercises.

I don't think I've seen anyone say that after 2 weeks, but definitely after 6 weeks it's possible. Walking is very important post surgery though, and within a week to 10 days you should be well capable of walking about half a mile (if you were before surgery, that is) although it will be a bit slow doing the "catheter bag shuffle".

Although I was getting thoroughly bored of walking, I did wait the full 6 weeks before trying to ride my bike, and then I started back gradually, trying to keep the first few sessions to half an hour.

My post-operative instructions said no heavy lifting or vigorous exercise (including hoovering and lawn mowing) for 4 weeks (because of hernia risk). I tried a short run at 4 weeks, but I hate running anyway. It made my calf muscles ache, so I didn't repeat it. I didn't like the sound of requiring hernia surgery, so was very careful with lifting for about 2 months.

If you are extremely fit to begin with, it can really help speed up surgical recovery. Also the surgery is a lot easier to perform if you are not overweight. Recovery time will also depend on genetics, diet, age and general life circumstances as well.

Originally Posted by: Online Community Member

You feel like you will be a half man not full man.hope you know what I mean.

I don't think this kind of comment is at all helpful. You don't know how he will feel. You only know how you feel/felt. It's perfectly valid to share your experiences, but trying to project them onto others is a step too far.

Edited by member 30 Jan 2021 at 11:25 | Reason: Not specified

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 30 Jan 2021 at 13:07

I'd just add that the daily blood thinning injections you give yourself for a month after surgery DO NOT hurt. If they do, you're doing it wrong! Pinch a fold of flesh to inject into and it's completely painless. (I was on them after my surgery for kidney cancer.)

Chris

User

Posted 30 Jan 2021 at 14:35

Originally Posted by: Online Community Member

Agreed, the needles for the anti-coagulant injections are so short and fine you can’t really feel the injection, in my case there was scarcely a mark left behind and never any bleeding.

Cheers, John.

User

Posted 30 Jan 2021 at 16:45

Originally Posted by: Online Community Member

Plus not all men have to do these self-injections - some hospitals require them for everyone post-surgery, some only for those they think are at particular risk of DVT

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Jan 2021 at 23:51

Hi Paul.

Thanks for update, don't beat yourself up as you are still in the curative 'camp'. Move onward..

This is the key question, as Peter posts.

... Quote ...I'd be wanting to know how confident the surgeon is of taking it all if I was seriously thinking of going that way.

Ask about MRI, location of lesions etc , can clear margins be achieved. Any possible attempt for nerve sparing. Surgery has served me very well. Any doubts the pendulum swings towards RT, I feel. I don't believe any other treatment options are available.

Gordon

User

Posted 31 Jan 2021 at 00:14

Originally Posted by: Online Community Member

Plus not all men have to do these self-injections - some hospitals require them for everyone post-surgery, some only for those they think are at particular risk of DVT

Some hospitals require them for all inpatients, even if there's no operation taking place.

User

Posted 31 Jan 2021 at 11:09

That's preposterous! We have both been inpatients a number of times and neither of us have ever had to do this, even after surgery!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Feb 2021 at 13:01

Hi Paul,
Sorry you find yourself in this situation. Your diagnosis sounds very similar to mine, although of course everyone's experience of surgery or radiotherapy will be different.

Pre-op PSA of 20 and G9 with spread into SV I personally wanted the reassurance of having the prostrate completely removed, and the confirmation that comes from the post-surgery pathology to confirm the grade and spread. But I'm sure there are equally valid reasons for opting for RT.

The surgeon made no promises about nerve sparing, other than he'd do what he could. I think being relatively fit and otherwise healthy helped with recovery from the surgery. And, personally speaking, I was not bothered about the daily injections. Best advice I received was to walk a bit each day, and each day walk a bit further.

In my case, although surgery was done on the basis that the intention was curative, I was told afterwards to expect further treatment at some point. Nearly two years later I'm still <0.1 on the quarterly tests - so far so good!

I wasn't offered hormone therapy (which comes as a surprise to some people) but point of mentioning it is that you'll encounter lots of views about different treatment options, and not everyone is offered exactly the same choices.

Notification

Join the online community now.