Worried about my options

User

Posted 01 May 2020 at 04:08

Originally Posted by: Online Community Member

Hi Barry,

Thank you for your reply.

I'm not on AS because I don't want to go into hospital due to covid, I was advised by my urologist that that is the best option for me. She said at this stage it's not aggressive and may never develop so would be unnecessary to have surgery.

Is it correct that it could go on for 20/30/40+ years without being an issue?

Sorry, I don't quite follow this. As I understand it from your original post you were offered AS and were happy with that except you were concerned that this might have been suggested because radical treatment would have involved a greater risk of contacting the C -19 virus. (From what has been said about segregating the virus patients this risk had been greatly reduced if not 100% guaranteed.) But you now say you don't wish to be on AS because you don't want to go into hospital to avoid covid. You wouldn't have to go to the hospital for AS at least if/until your PSA caused such concern that a further scan was done with the possibility of imminent radical treatment and this could be many months away. You could just get PSA tests done at your GP's surgery at 3, 4 or 6 months as considered appropriate and these results sent to the hospital. Similarly, if you were prescribed HT, the injections could also be given at your local surgery so no need to attend Hospital for most likely a few months.

Certainly, it's possible that your cancer might not spread for 30 or 40+ years but this is something that cannot be determined at this stage. PCa can be sort of dormant for many years and then take off. You are a young man to carry this risk for a long time and being diagnosed young PCa is often more aggressive. Doing nothing risks the cancer progressing without knowing it and possibly the best opportunity of curative treatment being lost.

I suggested the possibility of a second opinion to see whether your present consultants view that AS was a good course for you at the stage was supported. I can tell you from personal experience different hospitals (even the best ones) can interpret scans differently. You might not even need to attend for such an opinion if histology and scans and test results are made available for this. You could then further consider how you wish to proceed.

Barry

User

Posted 01 May 2020 at 07:35

My friend is G 3+4=7 and has been on Active Surveillance for five years, and is doing great with it, albeit with the most intensive checks, tests and scans money can buy.

If your medics think it is possible, go with AS for a year or two, and see how you get on. Make sure your PSA is checked every three months and you get an annual MP-MRI scan.

Best of luck,

Cheers, John.

User

Posted 01 May 2020 at 07:38

Barry

"I'm not on AS because I don't want to go into hospital due to covid,"

Think you have misunderstood what Jackfan is saying.

Thanks Chris

User

Posted 01 May 2020 at 08:13

I agree with Barry.

AS might be a sensible less invasive way forward if you were much later in life, but like me you’re even younger than what they generally consider a young man for this - and there is an option on the table that at present is highly likely to be curative.

When I was told that surgery was my only option it wasn’t because there weren’t others, it was because it was the sensible way forward at my age.

What you can say with absolute certainty is that it’s not going to get better on its own.

User

Posted 01 May 2020 at 13:02

Originally Posted by: Online Community Member

Barry

"I'm not on AS because I don't want to go into hospital due to covid,"

Think you have misunderstood what Jackfan is saying. Thanks Chris

But OP has already been recommended AS so doesn't have to go back to hospital until PSA tests carried out at local surgery dictate this is necessary as stated in my post. Even then he has the option to defer if he wishes.

Edited by member 01 May 2020 at 13:05 | Reason: Not specified

Barry

User

Posted 01 May 2020 at 14:06

No, you are misreading it Barry. What Jackfan was trying to say was "COVID and fear of going to hospital is not the reason I am on AS. I am on AS because that is what my urologist recommended."

Personally, I think he is quite right to question now whether AS is indeed the best option for him or whether the urologist is only recommending AS because of COVID.

Edited by member 01 May 2020 at 14:07 | Reason: to get the italics

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

User

Posted 01 May 2020 at 14:23

Thanks lyn

User

Posted 01 May 2020 at 17:49

l took what was said not what was meant! In the OP's shoes I would seek radical treatment rather than AS but consider a further opinion on whether it could be left for say 2 or 3 months until the C - 19 virus was less prevalent but support active treatment that was not offered if the present Oncologist was not wishing to offer it.

Barry

User

Posted 01 May 2020 at 18:41

I was 61 when diagnosed with not dissimilar numbers to yourself. I had RALP (robotic surgery) removing the prostate. Firstly the this sites tool is great as I used it to direct my thoughts and everyone’s journey is slightly different. Without sounding flippant I was passed my sexual prime and peace of mind were important considerations.

So I don’t confuse you too much, in my case after surgery my histology report significantly upgraded my cancer to T3B as it was a far more aggressive form of the cancer - it was 6 weeks between mri/biopsy and surgery I went from T2N0 to T3b and a Gleason of 9. In hindsight surgery was exactly the right course of action for me. After 18 mths PSA is ‘undetectable’ - golden words!!

On the other hand, on the negative side, I do have erectile dysfunction and whilst I still have orgasm I am achieving about a 70% erection and of course no reproductive ability. No Leakages or accidents. So perhaps sexual activity maybe an important consideration for you - and understandably so. Not every man having RALP has ED but I suspect it’s more common than published.

From my experience/learning the key to this is to ensure you have an accurate diagnosis of the nature of the cancer itself, make sure you aware of the side effects and your partner/wife is with you on the journey. I found the Macmillan nurses and consultants at Epsom hospital to be very good at providing information - and I did ask an awful lot of questions.

In the back of my mind i think if your specialists suggest AS then take your time to make your decision.

User

Posted 01 May 2020 at 23:27

Thank you for your input A John, it's really appreciated,as is everyone's here.

Thanks all.

User

Posted 02 May 2020 at 09:36

Hi Jackfan

This is my first post I've just been diagnosed 2weeks ago 3+4, I'm 56 and due to have my first contact with a surgeon on Monday, my consultant has told me the panel have advised 50/50 surgery/AS, I haven't really got my head around the score meanings yet but like your comment my big fear is incontinence and ED in the case of surgery, you mention choosing a good surgeon how far and wide did you look to achieve this or were you just choosing the best from the hospital you attended?

let me know thanks in advance

Ian

User

Posted 02 May 2020 at 09:50

Hi Ian, sorry to hear about your diagnosis.

I haven't chosen to have surgery yet, let alone a surgeon, I've been advised that AS is the sensible option for me at the moment, but after reading a lot of information about surgery I think I may be looking at that as my next option.

There is a lot of statistics that I didn't know about until the last 2 or 3 days(not had much sleep this week) that shows that ED is not a long term issue, and the incontinence is over rather quickly.

So I'll be speaking to my urologist/oncologist when lock down is over to discuss my options further.

AS would be perfect if I knew it wasn't going to develop but the worry that is can or has already is now worrying me.

User

Posted 02 May 2020 at 10:18

Hi again Jackfan

Thanks for the private message I will heed your advice, apparently I have to be a member for a little longer to reply privately. I have just noticed it was MikeW who chose the surgeon, like you though I would love to think the AS option was a sensible one in the short term (a little longer to enjoy normality) but I am worried the tiger/pussy cat scenario if the former could increase the chances of more nerve removal if I wait, I assume thats your worry as well is it?

User

Posted 02 May 2020 at 10:42

Absolutely spot on Ian, don't want surgery but is having it sooner a better option.

Once you've commented on a few posts you should get your restriction lifted.

User

Posted 02 May 2020 at 11:11

"There is a lot of statistics that I didn't know about until the last 2 or 3 days(not had much sleep this week) that shows that ED is not a long term issue, and the incontinence is over rather quickly."

Whoah - the men who struggle most mentally post-treatment are those who underestimated the likelihood of side effects or whose medics glossed over it all.

90% of men can get an erection 12 months post op but only about 60% can get an erection without chemical or mechanical assistance, and many of those can get an erection but not sufficiently firm enough for penetration.

About 90% of men are using one pad a day or less at 12 months, those who are using more may be using 6 or 8 pads a day for the rest of their lives.

Edited by member 02 May 2020 at 11:51 | Reason: Italics

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

User

Posted 02 May 2020 at 11:59

You might both find this thread helpful

https://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED

Also, don't assume that your only choice is between AS and surgery - brachytherapy appears to have the same success rate as surgery and external radiotherapy but usually with fewer side effects. There may also be a possibility of local treatments such as focal laser ablation / green light therapy if you have money or can get on a trial. If you are considering treatment, you would really benefit from seeing an oncologist before you make the decision.

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

User

Posted 02 May 2020 at 12:06

Hi Lee,

I thought I was young at 44 when I was diagnosed last year so very sorry to hear your story at 41!

Please click into my posts, I am now exactly 7 months post RP, let me know if you have any questions.

Jeff

User

Posted 02 May 2020 at 20:33

Cheers Jeff much apreciated

User

Posted 03 May 2020 at 00:05

Hi Lee,

Please see my profile, apologies I'm not the best with grammar etc

It includes me , RP da Vinci 2015 and my brother who chose RT.

Feel free to ask anything.

Bottom line for you is, stay informed, and ensure the best outcome for complete remission.

Sounds simple eh !

I meet my surgeon about c.2 hrs before he removed my prostate. Ie 5 minute chat . A bit of a surprise.

5 yrs on. PSA 0.02 I was dry after 48 hrs. Ie Catheter was out in 7 days . Just used a folded tissue as had a very slight leak if got up quickly, very awkward getting up from sitting position for about a week. ED. I had non nerve sparing, I was told by the original consultant nerves would be spared. However thanks to this forum , esp. Chris informative down to earth posts, me and wife persevered and in first 12 months tried most solutions, other than injections.

Took over 3 yrs before no pump, rings or meds needed. 5 years still improving. Obviously no ejaculation and no spontaneous erections when required. Far better outcome than I could have expected. I'm 2 years older than when I lost my dad to PCa so puts things in perspective.

There are a number of options for you in my opinion. RT or AS would not be on the top of my list at age 41.

I may have missed it , apologies. How many prior PSA tests, values and dates and why being tested ?

When is your next PSA test booked ?

Hope this helps.

Gordon

User

Posted 03 May 2020 at 01:30

Thanks Gordon, my 1st psa test was in late November 2019, was 6.7 repeated February I think, was 6.8. Had mri, then biopsy. As I'm on AS my next psa test will be about June this year.

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