How come all these side affects are ''glossed over'' by the medical profession

Hi Adrian,

IT still a mind f@$£% - sorry - I just cant get my head around how you are coping with the side effects.

How do you make that decision?

I take my hat off to you guys.

I am 57 years old.

Always under the impression that I was physically relatively healthy. I was overweight for the best part of the last 10 years  - but have been back at a normal weight for just over a year. do lots of walking and a few gym sessions a week.

I have an amazing and very supportive wife - whatever decision I make .

Well nearly- I had made a decision that if it was life threatening - that I would live with it, refusing the treatment options - rather living a shorter ''quality'' life, then going through with the treatments and side affects. 

Needless to say this had caused much consternation in the household with my wife and daughters.

Been accused of been egotistical, not thinking or loving my family etc.

Needless to say we have had our fair share of arguments over this decision. 

I have a ''back ground'' of poor mental health, poor body self image,. I just could not see myself going through this - I don't want to go down that rabbit hole of depression again. I have bought the T-shirt - more then once! seen therapists, Psychologists etc - most of my life, been on anti depressants (More than once) - just ''existing'' in that zombie state- not really living. 

The meeting with the Urologist - messed with my mind - his options were basically do nothing or have the prostate removed . I was like - OMG - this is two very complete extremes!!

The Oncologist meeting yesterday - was much more informative.

she explained in a much clearer away (Although to be fair - the Urologist may have as well - i cant honestly remember)

Her options were in order of her preference.i.e  if I was her partner/ son, father etc

Removal of Prostate

Active Monitoring

Radio therapy.

The disciplinary group - suggested - open to all treatments 

After much discussion we have settled on Active Monitoring

The reasons been: (And I may need to be corrected on this)

PSA Blood test - A score of 6.49

MRI Scan showed a possible ''legion'' on the right side

After Biopsy, right side was said to be benign.

However their was some abnormalities on the left side of the prostate.

 My understanding is 12 samples were taken during the biopsy of 12mm per sample - does this sound right?

Only two samples showed abnormal cells, and apparently only 1 mm in each sample?

The one sample was a 3+3

The other sample was a 3+4

Because my PSA level is relatively low - I am in between a Level 1 and Level 2 - not sure if this is right?

I asked about focal therapy as a option and was told that their was nothing ''to see'' so the focal therapy people would not know where to target the sound waves to. 

Would that be correct?

Oncologist - said her first choice would be surgery - because i was young and relatively fit/ heathy - not sure if thats Doctor speak for not been over weight?

This was so as not to worry that I had cancer in my body.

I boldly declared that Im not afraid of the cancer - I was just petrified of the side effects of the various treatments that were being offered.

She agreed that at this stage that Active monitoring is as good as the other two treatments - for at least the next 10 years if the PSA levels remained low/ constant and did not go over 10, or double over the next 2 or 3 years. A bit confused as this then will mean my PSA will be over 10. She also mentioned that she had patients who were on active monitoring for 25 years.

Needless to say I have chosen this path - and hopefully I can keep my PSA under 10.

I also asked her how do I keep the PSA level low. exercise is apparently one of the best ways. do some research on line - it is fascinating. Good diet and and supplementing - again not sure if I can give that advise on line. But it an active ingredient in tomatoes.

Just so that you all know - i have been seeing a mental health professional through out this period. Probably the reason I can actually communicate this with you. I would definitely recommend - this is no time to be a man - you will need every tool available to get through this.

I have cried, I have despaired, I have contemplated the unthinkable.

I am here - anyone who needs a shoulder to cry on, needs an ear to listen, wants to talk about there fears - I am here.

I cant tell you what to do, I am not trained in any way to deal with this - and we might just both cry!!

But if it comforts you even the slightest - then we have accomplished something.

Not sure how we go about getting my phone number out their - one of the techies - please advise.

Im a bit of a technical dinosaur.

Thank you to everyone sharing their journey.

It is appreciated,

Take care and look after yourselves

mack

Hi again Mack.

After reading your latest information, I would also opt for active surveillance. The only advice I'd give you, mate, is make sure that your monitoring is ACTIVE. Ensure that you have your regular PSA checks and periodic follow up MRIs and if necessary biopsies.

I hope, like about 70%, of blokes on AS, that you never need to have any radical treatment. 

Best of luck pal and I hope you have a great relaxed Xmas. 👍

Mack,

I know it’s easy to say try and stay calm, but remember members on this forum that are offering their stories and guidance are because they have experienced what you are going through. These are not just your friends, loved ones, or others that certainly have good intentions but they have not been necessarily where you are today. Unfortunately members of any support group might skew in a certain direction as J-B indicated. He is right. You can tell by this forum which is typical that there are 25 views for each comment. Many more are coming here out of concern for their situation seeking guidance then have remained within this forum posting. Again likely many more have experienced minimal side effects of the surgery but don’t spend the time on the board. Many who do are absolutely honest in their evaluation of their current status regarding their side effects and they are seeking out others that might have similar circumstances for support or to share with others to help them. Others not as many because many without side effects have moved on will share that they have had minimal side effects and likely have remained on the site to share this information with the new recently diagnosed concerned members to give a positive outlook. I have had minimal  side effects but going into this I was 100% Absolutely scared that I was going to be incontinent and have ED and sex with my wife was over. Once I learned that was not necessarily what was going to happen from being on sites like this it helped. Urologists and anyone would be remiss if they did not share possible side effects. But as it says possible side effects. You can’t pick  up your prescription for medication without being scared to death after reading the possible side effects, but taking the medication is necessary. It’s where you want to be in five, ten, or fifteen years. I imagine around your loved ones and family. None of the possible side effects are trade offs for that. If I had been told guaranteed side effects not possible I would still go with the side effects to be with my loved ones.

Hi again Mack.

There have been many on here who feel the same as you. A lot of us feel mystified, that in this day and age, the radical treatment path is often not decided by clinicians, but left to the patient. At times, to me, it felt like noone was prepared to take control of the situation, as they were fearful of repercussions.

I suspect that one day, artifical intelligence will take over. It will number crunch all your diagnostic factors and pick a treatment path which is most likely to give you the best outcome. 

As it stands today, there are no guarantees to any treatments.

I've been down two paths. I started on active surveillance but unfortunately my disease progressed and I ended up having surgery.

Although my AS failed, it's still the route I would have taken. The beauty of it is if you're not happy with it or your condition worsens you can opt for more radical treatment.

I'm a great believer if something isn't broken don't try and fix it. If doctors are telling you active surveillance is a suitable treatment plan for you, it's the one I'd take. If for no other reason, than it eliminating side effects.

There are folk on here who'll disagree with me. They'll say it's too risky, and occasionally things do go awry and sometimes they might. However, I decided the risk was worth taking. It didn't work out for me, but statistically it does for the vast majority.

Even though my AS ultimately failed, it gave me almost two years of side effect free living.

As I've often said before, you need to have the right mindset for AS, and you need to ensure that you are thoroughly monitored.

You comparing AS to 'kicking the can down the road' is quite apt. It is possible that you may end up, unhindered, kicking that can for the rest of your natural life or you might die of something else of get runover by a bus. 🙂

Try and keep your chin up mate. Make a decision, stick to it and try not to ever question the decision you've made. Good luck pal.

Edited by member 21 Dec 2024 at 06:16  | Reason: Typo

It looks like it just me and you on the night shift mate.🙂

You don't give up. You make an informed decision on what you think is best for you.

It's not all doom and gloom. Unfortunately this forum tends to focus on poor outcomes. I guess the vast majority of blokes sail through their treatment and are happily getting on with their lives, never needing to post on here.

Advances in both radical treatments are being made all the time and it seems that improved treatments are reducing the likelihood of side effects. There have been a couple of blokes on here who've recently had special single port robotic surgery and say they have no side effects. Likewise there are a couple of blokes who've had the newish 5 session only radiotherapy and who have had the same recovery. Another bloke commented that he'd been on AS for 8 years and never needed any further treatment and knew of several others who were doing as well.

 A lot of these good news stories are swamped by less successful outcomes, so you don't really get a balanced picture. 

You ask what a good outcome is. I suppose that depends on how ill you are. Basically, to me, the best outcome is the one that leaves you to get on with life as close to how you were, before cancer entered it.

Edited by member 21 Dec 2024 at 06:48  | Reason: Spelling

I hear what you're saying Francji, but the advice Mack's been given isn't as conclusive as you suggest. His oncologist at first recommended surgery but when Mack told her that he could deal with having cancer and being monitored she said that it was as good an option for him as surgery or radiotherapy. This was echoed by the MDT who said all 3 treatments were suitable. The poor bloke seems to be in the same position as most of us have been in, eg "We'll leave it up to you to decide"

I remember when they were dithering about as to what treatment would be best for me. It went from AS, then to surgery, then to radiotherapy. I can remember being told "If you were my dad I'd be advising you to have radiotherapy" I can remember replying, " If you were my son, you'd know how stubborn I am. I was offered surgery and surgery's what I want."

To date, I think I made the right decision, but I'll never be sure.

Edited by member 21 Dec 2024 at 10:24  | Reason: Typo