Diagnosed at 44

Really sorry about the diagnosis. At least it has been identified early. A former colleague of mine was also diagnosed in his mid 40s and had surgery several years ago. He is now running ultra marathons, which is not a side effect I would not want! Everyone is different and and the decision depends on your own individual circumstances at the time, medical advice and your views. I am 57 and now 9 weeks post surgery. I made my decision based on  wanting it out and to maintain treatment options in the future should there be a re occurrence. Good luck. 

Hi Gee_Baba

You and many others may regret having had RP because of incontinence and ED. The choice of treatment is probably the most difficult decision any man may have to make. Of course if the cancer has spread beyond the gland then RP is generally not an appropriate option. I had surgery over 12 years ago and suffer from mild incontinence when sexually excited and when I orgasm which is obviously very inconvenient, and ED which is more due to my age than the surgery. As far as erectile function is concerned there is some evidence that even if nerves are spared most men's erectile function will not return to the per-surgery level. Despite this RP is quite popular because of the psychological benefit of 'getting rid of cancer for ever'!  One of the reasons I chose surgery was that any radiation treatment may leave some cancer cells untreated (although modern targeted approach makes this less likely). Many men have enlarged prostate, as I had, and therefore removing it solves the problem difficulty with urination. Also if the surgery is not successful the other treatments are backups.

I often point out to recovering men that whatever treatment you choose you don't have to give up sex. There are many options to deal with incontinence and ED, should you be unlucky. Because of my age my erections were very weak pre-surgery and did not wish to use any drugs or invasive treatments like injections or further surgery and opted for RP. Because my wife and I were determined to re-establish our sex life we did find a solution that suits us and has had unintended benefits. If you are interested you can read my posts at:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

For that reason I would still choose Prostatectomy.

Maybe get a second opinion on Active survielance too.

I was 51 when diagnosed T2a N0 Mx.

All options were on the table but although it was my decision the surgical team did hint heavily that RARP was the best option for some of my age because of the potential long life ahead of me. The other options risk the cancer returning during that  time and then having further treatment. I am not incontinent but still have a level of ED despite the nerves being saved. I honestly do not regret the treatment decision.

Someone as young as yourself will soon be back on your feet. I was back to long hikes within a couple of months and despite the ED my sex life is still good.

A few more thoughts...

Having been diagnosed with two cancers at such a young age, you might want to think about having genetic screening. It's not necessarily a good idea - there are pros and cons, and you should be counselled on these before going ahead. If you are interested, ask you consultants and GP for their views and how to be referred if you want to go ahead.

Again, having been diagnosed at a young age, you are looking for a long period of remission. This might mean that you could need another treatment in the future. Some treatments lend themselves to follow-on treatments better than others. For example, prostatectomy is easily followed with radiotherapy, but radiotherapy is not so easily followed by prostatectomy (it's technically possible, but quality of life outcomes are not so good).

Radiotherapy does carry a small risk of causing additional cancers later in life. This is not usually much of a consideration, but again, being younger you have a longer rest of life which will make the risk higher. It might perhaps be a treatment to keep for later when you're older, if you were to need more treatment, and given you do have some other options.

On active surveillance, a question I would ask is, given your cancer can't be seen on scans (definition of a T1), how will they be monitoring it? Obviously they'll use PSA, but what else?

44 more years is not out if the question.

I was 46 when diagnosed.  Before surgery, I was T3a Gleason 7.  Post surgery, upgraded to T3b and Gleason 9.

You do have to consider that your tumour may have been under-estimated like mine.

I was advised to have RP.  No incontinence afterwards.

I needed salvage radiotherapy. Some bowel incontinence afterwards but well controlled.

Non nerve sparing and now have a penile implant.

I'll be 53 in August.  PSA is now <0.006, the lowest possible reading.

You have every reason to hope.

Hi Carl,

I’m 48 and have an 11yr old boy and like you, it’s my intention to be around for as long as possible to see him grow up! Hopefully I can do that whilst living as ‘normal’ a life as possible as well. I chose Brachy in the hope that it will tick both boxes satisfactorily.

Time will tell whether I’ve been overly optimistic but regardless of what the future holds, when diagnosed as we’ve been, at an early stage and with a low (low/intermediate for me) grade, I couldn’t really see any differences between the curative outcomes of Brachy or RARP as a primary treatment.

Despite the popular consensus being that RARP would be the path of least regret for us young men, I just couldn’t reconcile the fairly significant increased risk of side effects and recovery time that was associated with RARP when the likelihood of success with Brachy was virtually identical.

The consultant who did my procedure said that when he started doing Brachy more than 20 years ago, he thought 10% of his patients (all grades/stages) might fail the treatment and require salvage treatment. In fact, 2000 procedures later he’s had less than 30 patients suffer failure – that’s just 1.5% of all cases over 20+ years! He also made the point that 20 years ago, the quality of the procedure and the dosimetry of the implants was far inferior to today’s techniques.

Another oncologist at a different facility said he and another colleague had also done more than 2000 procedures over nearly 20 years and their failure rate in that time was less than 8%. This second oncologist also said that he didn’t believe any of those failures was because a 2nd independent cancer had developed further down the line but rather that the failure was because the initial treatment hadn’t succeeded in killing the original cancer and that then caused future biochemical failure. The key then, is whether the initial treatment is successful and not whether a new cancer will subsequently develop in the prostate that has been left behind.

Someone posted this link ( https://www.youtube.com/watch?v=jY9oZ6iiVq4 ) in another thread which I thought was very interesting and reiterates a lot of what I heard when meeting with the different oncologists.

So yes, there’s no doubt if Brachy fails to cure the primary cancer then salvage is difficult – more difficult than after RARP and probably always with worse side effects but that doesn’t mean salvage after failed RARP is a cakewalk either - it too can result in significant problems. Conversely though, if it works, Brachy is likely to leave you with far fewer side effects and a better QoL.

Some of the best advice I felt I was given was to try not to focus too much on the ‘what if it fails’ question but instead focus on the ‘how likely is each treatment going to be at curing what I have now?’ question.

It’s still a shocking decision to be faced with though and although it’s probably inevitable that I’ve come across as being Brachy biased because that’s the path I recently chose, I really don’t mean to try to influence anyone – I just want to try and pass on some of the more pertinent information I gleaned when trying to make a decision.

It was definitely the hardest decision I’ve ever had to make and I lost count of the number of times I changed my mind during the process - whatever you decide, I wish you the very best of luck and a long and healthy future life.

Cheers, Paul

You are absolutely right - some people would not be suitable candidates for Brachy because of their existing urinary symptoms as the radiation can make it worse.

Before my consultant would 'authorise' my Brachy treatment, I had to prove my urinary function. This was done by having a flow test in the hospital followed by a scan to measure the level of voiding achieved (i.e. how empty your bladder actually is after you've performed!)

I also had to complete the IPSS questionaire https://www.baus.org.uk/_userfiles/pages/files/Patients/Leaflets/IPSS.pdf 

I don't remember what my consultant deemed an unacceptable IPSS score to qualify for Brachy but I know my score was just 1.

"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.

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.

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. 

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.

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.