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

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User

Posted 05 Jan 2025 at 23:42

IDK2

That would be confusing, but the oncologist sure seems to want to minimize the cancer in the letter. I am actually surprised that he used the words “this truly is a little amount of cancer” in a follow up sentence trying to reinforce his first statement regarding the finding of tiny specs of low grade cancer, although I often think low grade is just Gleason 6. I wonder if there is the availability for Mack of genomic testing such as Decipher or the urine test ExoDx to see how aggressive the cancer is. Maybe the Oncologist is limited by the bureaucracy to recommend AS to divert and delay patients for treatment for as long as possible whether it truly is in their best interest and by his statement that if it was his family he would seek treatment he is expressing his actual view as opposed to what he was supposed to say in that highly directed letter which would point to AS. Maybe it’s time for a second opinion.

User

Posted 06 Jan 2025 at 07:48

Hi Ned

I am not sure the tests you suggest are routinely available on the NHS. Yes I agree the Oncologist written report is unusually written and I do not know if the two oncologist Mack refers to are the same person.
The real bummer is that the only way to know the true extent or otherwise of the disease is to have a pathologist examine the prostate after removal, the very thing trying to be avoided.

User

Posted 12 Jan 2025 at 00:48

Hi Ned, IDK2 and others

I see you mentioning the Decipher and Exo Dx tests.

I am looking into this - but to be perfectly honest - I'm not sure if I want to know how aggressive the cancer could be.

Actually - It is one of the few regrets in my life that I had a PSA test -

The last 3 months (From the result of the PSA test - to the diagnosis),have been a mental journey to hell and back a 100 times a day.

Strangely enough its not the cancer as such that Im scared of - its the 'treatment' and side effects - that are terrifying me into a state where I find it difficult to function on a day to day basis.

I was not doing too badly, but a work colleague has been diagnosed with stage 4 colon cancer (Tuesday this past week), and this frightened the hell out of me. I see her ''dying'' in front of. my eyes. My colleague is still coming into work as she is on a waiting list for chemo. However she is in tremendous pain and discomfort - she has become a mere shadow of her former self in a few weeks.

It really does bring home the reality of cancer - 'home'.

Thank you for all the support

Mack Mack

User

Posted 12 Jan 2025 at 00:49

Hi Ned, IDK2 and others

I see you mentioning the Decipher and Exo Dx tests.

I am looking into this - but to be perfectly honest - I'm not sure if I want to know how aggressive the cancer could be.

Actually - It is one of the few regrets in my life that I had a PSA test -

The last 3 months (From the result of the PSA test - to the diagnosis),have been a mental journey to hell and back a 100 times a day.

Strangely enough its not the cancer as such that Im scared of - its the 'treatment' and side effects - that are terrifying me into a state where I find it difficult to function on a day to day basis.

It really does bring home the reality of cancer - 'home'.

Thank you for all the support

Mack Mack

User

Posted 12 Jan 2025 at 00:51

Does anyone know or has first hand experience of Immunotherapy?

Thanks in advance

Mack Mack

User

Posted 12 Jan 2025 at 01:24

Now then mate.

I might be wrong, but I think immunotherapy is only used on those with incurable prostate cancer.

I'm sad to see that the thought of radical treatments and their possible side effects are impacting you so badly, Mack. Honestly they are not that bad, mate.

You also can't really compare a type of cancer to a different type of cancer.

If I had to have a cancer, prostate cancer would be near the top of my list.

Edited by member 12 Jan 2025 at 01:26 | Reason: Typo

User

Posted 12 Jan 2025 at 09:09

Hi Adrian

I just can't get my head around the radical treatments.

What am I missing?

What am I not seeing?

What specifically is not so bad?

I can't see myself working in my current field - if I am incontinent or have issues with wetting my self.

- I work in the food industry

I can't see how having sex without an erection works - I've tried researching - but get answers like

Climaxing with a flacid penis or vagina stuffing - neither of which appeal to be honest

Cuddling - f*** - does not every man cuddle with his wife as a standard

- Mentally - I know I cant handle the hormone therapies

I just need it all to end

Sorry -

User

Posted 12 Jan 2025 at 09:14

What do I not understand

User

Posted 12 Jan 2025 at 09:22

Dear Mack

i am sorry you are finding this so difficult but it is not surprising as there is so much to get your head around. Many men on this forum have found counselling very helpful and this may be something you would benefit from too. I know that many of these same men thought counselling was not for them but having given it a go found it enormously beneficial.Sometimes when our anxiety is very heightened it does not matter what further info we obtain about the cause of our concern the anxiety does not go away because we still focus on the uncertainties as rarely can we provided with absolutes. Hopefully some counselling will allow your mind to stand still long enough for you to make more sense of things.

Edited by member 12 Jan 2025 at 09:25 | Reason: Not specified

User

Posted 12 Jan 2025 at 09:44

Mate, not everyone gets side effects. This forum is used mainly by people who've had problems with the disease, treatments and side effects. They'll be thousands of men, who'll we'll never hear from, that get through treatment relatively unscathed.

Of course there may be difficulties, but if there are, you gradually adapt to them. You could look at it another way, and ask yourself, if they deem treatment is necessary. What are the alternatives. To me, the risks and side effects of doing nothing are far worse.

I'm sure that in the past you'll have successfully dealt with adversity, this is just another challenge, mate.

Remember, worrying about about things that may never happen only spoils today and will not affect what happens tomorrow.

I wish I could have a pint and a natter with you, perhaps I'd be able to reassure you better. Actually it's one of the reasons I started the thread A place for a chat. It's an area, like a virtual pub, where blokes just have a general chat. It's less formal than communicating on specific cancer related conversations. There's a great bunch of lads who regularly pop in, all with different degrees of the disease, and discuss life after treatment. The banter is fab and we often laugh in the face of adversity. You'd be made very welcome.

https://community.prostatecanceruk.org/posts/t30284-A-place-to-have-a-chat

Of course you could also go for counselling or go to face to face support groups. That sort of help has never been my cup of tea but it suits many.

Edited by member 12 Jan 2025 at 11:58 | Reason: Additional text

User

Posted 12 Jan 2025 at 11:53

Mack - sorry this doing your head in so much. The advice of counselling sounds good advice - although it’s not something I’ve personally explored, it sure does help to talk about this stuff. Since my first raised PSA, I’ve been quick to mention to people what I’m going through and, in doing so, have discovered several others in my locality going through similar and who I have gone for a coffee with. Nobody has exactly the same diagnosis and personal situation but I have found it incredibly useful to understand and share experiences.

I think I might represent a more silent majority who emerge relatively unscathed from early radical treatment - and you don’t always hear that. It’s worth voicing that here because this forum (as Adrian points out) may lean towards those experiencing issues.

User

Posted 12 Jan 2025 at 13:22

Hi,

I am having therapy, literally from the word go, I would hate to know where I would be without it.

My therapist is not a 'cancer' specialist - But I am comfortable speaking to him and trust him.

Should I be seeking out a therapist - specialising in cancer?

Thanks to all for the support

Mack Mack

User

Posted 12 Jan 2025 at 15:58

Mack , I recently had some radiotherapy at one of the Genesis care centres and they offered 5 free sessions. I don't recall the sessions focusing on the cancer it was more about attitudes to situations.

As already said, forums like this do have more people on it with problems ,than people without problems.

Again as said, side effects are not guaranteed to happen to everyone. I was initially 99 percent dry a couple of weeks after surgery. As regards intercourse with a flaccid penis, I describe my orgasms as out of this world, and the wife has no complaints.

I am fortunate to have a pro active approach to life's situations , I don't worry about things I can't change, I look for solutions.

Best wishes for the future with whatever route you take.

Thanks Chris

User

Posted 12 Jan 2025 at 18:57

Mack,

i know it is hard not to think of the side effects, but literally thousands and thousands of people throughout the UK, US, Mexico, Europe, the world undergo annually treatment of Radiation, and Surgery for prostate cancer successfully and how many countless millions over the years. These forums as have often been said will tilt towards unfavorable and look at how few members of all who have experienced prostate cancer are actually on this site and post. That means there are literally millions that are at the minimum content with where they are. That is not to take away anything from the people who are experiencing side effects on this forum but often time these forums are where those people go to share and exchange and offer and give and get advice and ideas to help each other which is immensely helpful. This site helped me prepare for my surgery and the possibility of how to handle my side effects. On a scale of side effects from 1 to 10 with 10 being the worst, please don’t accept 10 as your outcome. Clearly it seems incontinence and ED are two of your biggest concerns and for likely everyone are. They were for me. I tried to keep a perspective that if you read about any surgery or treatment for about any condition a percentage of people will have serious side effects from having your tonsils out, to shoulder surgery to foot surgeries. Also if you take any medicine at all, read the prescription bottle of all the side effects. It means people do get those side effects but not everyone. You take the medicine or surgery to get better, killing the cancer will get you better. I went thinking what about the worst and how would that be but also realizing more than likely the worst could be a 5 on the scale, but over time things should improve. I was actually so more favorable than I anticipated. I had purchased diapers , pads, pullups in preparation and immediately began wearing them after my catheter came out. Fortunately it turned out I was fine. I did learn that at night putting the diaper on that I called it was actually quite comfortable. I was prepared that I could be wearing them. These are not what I believed them to be. One could not tell you had it on. These were for worst case and although some who use many, they work throughout the day for many working, even in the worst case they are carrying on in their jobs and now if its only half bad their are pads and liners again in the beginning I also to be safe was wearing those. All women have lived their lives wearing pads during their time of the month and have survived and worked. I always tried to keep that perspective. Most incontinence is temporary over 6 months usually. On the ED side you will also hear about all the ways you can still have sex with implants, medications and other aids to help restore yourself. Accept that it likely won’t be the same, but you and your wife can still enjoy each other, its not just cuddling you are left too. Again I am not where I was but way way better than the worst. Look around know that you are being given a chance to eradicate your cancer and be around for your loved ones.

User

Posted 12 Jan 2025 at 19:30

Hi Mack,

Only just joined this thread as I’ve been away for a while. I was one of the unlucky ones and suffered quite debilitating side effects in HT, At one point I struggled to get out of a chair. I had no real issues with RT…some short term effects with urgency but that soon passed. I’ve always been of the opinion that if you can have RT without HT then it is a much more difficult decision to make between that and surgery. your are quite young so that come into play with your decision. i would have chosen surgery but it was off the table because I was T3B.

Yes, there are side effects from whatever treatment you have, some get off lightly but others have their QOL affected to various degrees. Despite these side effects, life goes on and you learn to adapt…and I think. Most men do. For example I have zero libido(although signs it is just starting to come back) but I can still have sex even though I developed Peyronie’s disease. Zero libido didn’t really bother me…I’d rather just have had a nice cup of coffee🤣🤣🤣, but once I got going I could still have strong orgasms. I can’t imagine what it’s like to have libido but not be able to get an erection and have sex, but the guys I know from Maggies who are in this position, just deal with it and there are things available to help. I think the fact that we are our treatments have hopefully saved our lives helps you come to terms with any side effects, and if you have the support behind you, it makes a huge difference.

I wish you luck whatever you decide to do.

Derek

User

Posted 15 Jan 2025 at 17:44

Mack

Was a bit like you and went on AS for quite a while. Bit the bullet in the end and to be honest after a bit of recovery time I was fine. Have a click on my profile if you are interested in what happened. All the best

User

Posted 21 Jan 2025 at 19:35

Hi everyone,

Thank you for the support and sharing your expieriences and thoughts.

Unfortunatly - I still feel very vulnerable - I also worry that I may be one of the unlucky ones - as their seems to be no rhyme or reason as to who will or will not suffer from indefnite Erectile and Incontinence problems.

Does it get easier to make a decision if the cancer grows?

Wishing you all the best

Mack Mack

User

Posted 21 Jan 2025 at 20:19

The trouble is if the cancer grows significantly for many men the decision becomes easier because options are ruled out. That is the reality for some. Yes it is very difficult but at least you have all options open to you at this time. There are no guarantees. You could have surgery and experience no incontinence or erectile dysfunction and some fortunate men find themselves in that position but others sadly experience far more serious side effects of surgery. No one can say definitively what your outcome will be in terms of the side effects of surgery or radiotherapy. Your surgeon or oncologist may be able to make a more informed guess but could not talk to you in terms of certainties. That is what makes dealing with this disease so difficult.

User

Posted 23 Mar 2025 at 15:41

“Side Effects Glossed Over”

I think that is a very accurate statement in respect of medical advice. The doctors and radiotherapy medical staff have a printed list given to all prostrate patients which is a catch all documents covering a long list of possible outcomes. It is rather like the leaflets you find with all medication nowadays.

Of course the the most important thing is, will it remove my cancer and prevent or delay it’s return.

It’s interesting to read success percentages which are often printed in scientific journals. They measure the successful removal or extinction of cancer cells. On this basis robot prostatectomy scores very high. What is not well documented is the side effects, both short term and long term.

As a patient you want to always look to the positives and any possible side effects take second place to the overall objective.

I had Robot Prostatectomy last year, told by the consultant, 4 to 6 weeks with catheter after Operation. Stitching to base of bladder poor resulting in continual leak. Catheter in place for 5 months, then 4 nylon clips used to hold joint whilst stitching takes place migrated into bladder. Removal operation took place.

Now told I have to use self catheterisation twice a week for the rest of my life to stop the joint to the bladder sealing due to scarring. On the positive side I am continent after 8 months.

So this is recorded as a successful outcome. Successful in terms of cancer removal, but clearly long term side effects.

The conclusion is I am alive and very grateful for that, however I think the statistics for the various treatments do need to be approached with caution.

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