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Diagnosed at 44

User
Posted 21 Jun 2023 at 10:03

"There is also encouraging responses on incontinence and ED too which it seems is down to location and severity of tumour.
If I understand correctly too, both treatments have a good success rate, but Brachytherapy has a higher 2nd cancer chance return rate and is harder to salvage treat."

Not quite. If the cancer is believed to be contained and nerve-sparing surgery is done, ED and incontinence are down to the skill of the surgeon, a bit of luck and the availabilityof post-op support in your NHS Trust. ED/incontinence due to location and severity only applies to men who have to have non nerve-sparing RP.
All other things being equal, brachy, RP and EBRT all have almost identical success rates for a man with a T1 / T2a / T2b tumour.
It is true that salvage treatment is more difficult after brachy or EBRT but choosing a treatment based on what happens if it fails is a flawed strategy. Statistically, if the primary treatment fails, there is only a 50% chance of salvage treatment being successful. It is better to choose the primary treatment that is least likely to fail in your case and then decide whether you can live with the known and potential side effects. If you can't, you look for the next best treatment that has side effects you are willing to risk.

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

User
Posted 21 Jun 2023 at 10:13
Just to add that I am now 6 weeks today from RARP. Yesterday I needed just 1 #2 pad for the whole day and last night's pad was completely dry. I did get up twice in the night to pee into my urinal bottle but zero leakage.

I know when I need to pee and can hold it in with just the occasional accident when I get lazy - but I am sure that will become automatic eventually. I will probably keep wearing the #1 pads for some time just to be safe.

ED is something else as I am guessing that will take a lot longer - but a pleasurable orgasm is still very possible - an erection is not a requirement for that and bedtime can still be a lot of fun for both parties.

I'm not saying that if you chose RARP that you would get the same results - but that's how it has affected me.

Godd luck

User
Posted 23 Jun 2023 at 17:46

Saw the urology nurse today and she said that they have lots under AS for many years in my situation but the consultant still recommends treatment due to my age and that I will require treatment in the future. 
So better now when fit, young and healthy than older. 
She also brought out a Cambridge report on 10yr life expectancy (98%) and side effects on Radiation, Brachytherapy and RP which seemed fairly similar overall with ED & incontinence. 

Not much clearer on the decision front but still have time. It helped my daughter understand what is happening though which is a great bonus. 

User
Posted 23 Jun 2023 at 21:50

The medics sometimes make strong recommendations, in my case there was only one treatment plan likely to work, so it was a very strong recommendation. In other cases there is recommendation to treat but the patient has options. In your case at the moment it seems the medics are inclined to treat, but your immediate risk is so low they are not making a strong recommendation.

I don't know when your cancer will start to progress, for the purpose of argument I'm going to assume ten years.

I doubt a 54 year old would take much longer than a 44 year old to recover from treatment.

Treatments are improving all the time; in ten years if AS lasts that long you will be offered better treatment than they can offer you now. Any treatment other than HIFU or AS will impact what future treatments may be available to you.

The probability of side effects from treatment I do not know, from this forum one gets a very negative bias. If you can delay these side effects for ten years that would help maintain your quality of life whilst you are young.

I am curious as to why you ruled out HIFU (you don't have to justify your actions to a random guy on the internet, but thinking through your reasoning may help you make the best decision for you). The fact it was on a trial would guarantee you some good followup monitoring.

 

 

 

Dave

User
Posted 23 Jun 2023 at 22:57

Thank you. 
Hifu would be available over 100miles away and I would require frequent trips for consultations, tests etc before they accept me. 
Then was advised that it may or may not work and that they don’t know for how long or recurrence rate as of yet. 
I have to think of my daughter and wife on my decision and what they can cope with too. 
Uncertainty is not good for them

User
Posted 23 Jun 2023 at 23:07

HIFU was discussed with my surgeon however was ruled out because he thought the size of the tumour was too big to have a good chance of successful treatment. My legion was 14mm. 

User
Posted 23 Jun 2023 at 23:22

Hope you had a successful treatment 

User
Posted 28 Jun 2023 at 06:39

Got my follow up date of 6th October. 
The time now seems like limbo where you know something is going to happen but not exactly what but you’re just waiting. 
The decision is tough and this time between with not exactly knowing what the next steps will be until I’ve had the discussion on the 6th is an unknown. 
The unknown is the worst thing I think. 

User
Posted 28 Jun 2023 at 13:09
Hi Carl,

It's a horrible period and if you're anything like me, you'll change your mind about what's the best course of action multiple times! It does feel good when you make your decision though because at that point you have a lot more certainty and can start to prepare yourself for what's going to happen.

October 6th seems quite a long time to have to wait for a follow up? Maybe someone else will confirm if that's normal but my NHS referrals and follow ups were much quicker than that.

Just a thought, but have you actually spoken to an oncologist or just a consultant urologist?

Often the urologist will specialise only in surgery and wouldn't have anything to do with Brachy. Personally, I would want to talk to the specialist who would be doing the Brachy procedure about Brachy and not just the urologist.

I don't know how it works in your area but I identified an NHS oncologist who did Brachy in my area (there weren't many to be honest so they weren't hard to find!) and then asked for my GP to refer me.

I did the same for a second opinion from a different NHS urologist and got appointments with both of them within a few weeks of asking for the referral.

Personally, I found talking to the different specialists about their actual speciality, rather than being told about their speciality by the other specialist, really helpful.

Of course, you might have already spoken to both oncos and urologists in which case, reading this has been a waste of your time!

User
Posted 28 Jun 2023 at 16:04

Hi Stan

Very helpful thank you. 
I have only spoken to the consultant urologist when he told me my diagnosis. 
Then received my follow up appointment yesterday. 
I will enquire about other people that I can contact when the specialist nurse is back next week from vacation. 

I guess it is like everything, you have to personally push for things and hopefully clarity will then follow. 

User
Posted 28 Jun 2023 at 16:07

You're going to have to get used to that 'unknown' feeling. Whatever treatment you have, you will have followup PSA tests once every six months or so post treatment. I had one on Monday, results are due Friday. I don't get anxious, as I'm an optimist and assume all will be OK, but I do get eager to know the result.

Dave

User
Posted 28 Jun 2023 at 16:32

It will certainly be a learning curve for someone who likes control! 
Hope the PSA is good 

User
Posted 28 Jun 2023 at 18:01

Originally Posted by: Online Community Member
October 6th seems quite a long time to have to wait for a follow up? Maybe someone else will confirm if that's normal but my NHS referrals and follow ups were much quicker than that.

Carl has already stated that he is on AS - that means that the hospital has no target time in which to offer him a follow up appointment for the purpose of agreeing and starting treatment. 6 monthly review is a perfectly normal timescale for a man on AS

 

I agree with other posts though, Carl - don't necessarily wait until October and then ask to see an oncologist only to discover that will be another 6 months' waiting. Your surgeon will have a bias towards surgery (and in your case, seems to have a bias towards not treating at all) so essential that you see an oncologist to discuss alternatives. 

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

User
Posted 28 Jun 2023 at 18:56

I am not on AS at the moment. 

The consultant Urologist who we met and diagnosed me said that he did not want/advise AS and that I was to go away, discuss, take the news in with the family and come back with an idea of treatment (surgery or Radiotherapy/Brachytherapy) at the follow up appointment which is now October 6th. 
Originally he said September but like most things, appointments fluctuate. 

I will definitely seek further advice on oncologists etc. for further clarification and information that will help me make this important but quite unclear at the moment decision. 
many thanks 

User
Posted 28 Jun 2023 at 20:27
My apologies; I had read your post and interpreted that the urologist has put you down on the paperwork as AS until your follow-up appointment, mainly because the NHS target is to start your treatment within 62 days of diagnosis and 31 days of you informing them which treatment you are opting for. Clearly, in your case, they are going to miss the first target by a wide margin and possibly miss the second target as well - marking you down as on AS stops the clock ticking. Obviously, I am too cynical :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Jun 2023 at 20:54

Thank you for clarification on waiting times. 
I did not know that. 
I could look at it in a positive way that they are not too concerned as such and want to give me more time to think. 
I think we all have a bit of cynicism in us 😊

User
Posted 28 Jun 2023 at 21:04

Interesting, the way it goes is you usually discuss treatment options with the specialists. Surgeon and Oncologist. Plus I also had a very long discussion with the specialists nurse to talk through the different options. In fact the Nurse was present at all the meetings I had with the consultants. Finally I had a nurse designated to me who I could ring for advice.

User
Posted 28 Jun 2023 at 21:19

I had a specific nurse with us in our meeting. I guess I have all these different meetings to come once I choose. 
it seems that it’s more prolonged for myself after the initial consultation. 

User
Posted 19 Sep 2023 at 16:45

Update today:

last PSA in May was 5.07 today it is 1.27, I haven’t had any treatment or anything. 
I am guessing this is a great sign that nothing is growing. 
I must say that I did not think it would go down that much though. 
Is this normal? 
I also have my Genetic consultation tomorrow as the consultant believes I may have the Braca gene. This will be an interesting discussion. 

User
Posted 19 Sep 2023 at 18:33

That sounds fantastic, even if perhaps unusual (?).  Others may know better.

Best wishes,

JedSee.

 
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