Anyone here with IDCP (intra-ductal cancer of the prostate)?

Hi DP857864 ,

I don't have your variety of cancer.

I do have a more standard Gleason 9 aggressive diagnosis, broken out of the gland and affecting the seminal vesicles and one lymph node nearby.

Diagnosis is "locally advanced" cancer, giving me a reasonable prognosis if treated properly.

Because of the spread I was not offered surgery, but have had a relative long (37 days) burst of radiotherapy, and will have a total of 3 years of hormone therapy.

So far I have had 14 months of hormone therapy and have completed the radiotherapy. The result of the combined treatment is that my PSA level is now undetectable, which is good.

I can't tell you what to do about your Urology boyo, but we, here in England, have the concept of a "knuckle sandwich" which might cross your mind. Don't do it, just imagine it. It helps.

You will see that I now have some experience of hormone therapy. I am not miserable - far from it.

To get into detail, I have these side effects:

1. Impotence - I can't get it up. So much so that the police phrase "Go on about your business, nothing to see here." has more than a little truth for me.
2. Loss of libido - completely. I don't care about the above.
3. Hot flushes - If I have 2 or 3 bad ones in the day, that's all I have. I can have more, bit they are small. I refer to them mentally as "flushettes". Usually they don't mix.
   
   

Now any one of these might make you miserable, but they don't have too. For me, choices were easy. They gave me a good chance of living for ten years. Also, my wife has her own medical problems, so penetrative sex is history anyway.

However, when you stop the treatment, it all gradually comes back and the hot flushes stop.

You have a life. There is a difficult time ahead of you, but you can win this battle.

Hi Dpoirier. You seem to have a good coping approach, glad to hear your psa is  currently undetectable. We are all slaves to the PSA test to a lesser or greater extent. I am currently 4 fractions into a 33 day treatment of radiotherapy,  any tips or observations? Side effects ? Best wishes S

Hello Daniel (Dpoirier857864) 

A warm welcome to the group although I am so sorry to find you joining us.

With the help of one of of my fellow  Community Champions (thanks Jane) the following Community Members look to have IDCP

 DJN 

   Munster   

https://community.macmillan.org.uk/cancer_experiences/new-to-the-community-forum/f/new_to_the_site-13/295055/intraductal-prostate-cancer/2196734

https://community.macmillan.org.uk/members/munster

community.macmillan.org.uk/.../activities

I hope by following these links you can find the information you need. If you click on the member's user name or avatar you can see their personal journey and activity on the site.

Best wishes - Brian.

Hi DP857864 

Please feel free to ask me any questions. As you will see from my profile, i have had several procedures over the last few years. If you are opting for surgery, find a surgeon that you believe in and one that does nerve sparring. You have time to decide, however the sooner the better. 

I still have an amazing life worth living for. 

All of the best.

Munster

Thank you so much everyone for your compassionate, thoughtful replies. This community is simply awesome. I will be reading some profiles (and more) and will probably be reaching out with specific follow-up questions.

Thanks again! 

I would be really surprised if it was your oncologist who said that Hormone Therapy (HT) "will make a significant chunk of my future life absolutely miserable", (my highlighting). 

Every one is different - some people do get hit by major side effects - others don't. Unfortunately, this forum unwittingly perhaps gives a more pessimistic view of prostate treatments, because the many people that don't have much in the way of side effects or other problems don't post here. A bit like on-line review sites; who reports on their TV/washing machine/microwave/CH boiler if it is now in its 25th trouble free year ?  If it fails after 3 months.................well, look out Amazon !! 

I must be one of the "odd" ones - I started posting on here because my review was good. I had a different sort of Radiation Therapy (RT) which I thought was outstanding. It may well have led to my greatly reduced RT & HT side effects - but it may not have ............. that might just have been my genes  !

You will not get all the bad side effects, you might get some of them - if you do, there is medication available to counter these. 

Please give the proposed HT a good chance to do its thing. 

Sincere thanks, mstev2, your history, even with the differences, is a huge guidance. I'm very pleased to read that you are coping really well with the side-effects, particularly of the hormone therapy.

I'm still wondering (since I have no detectable spread) if the option of brachy + beam *without* hormone therapy is a good option. For instance, I'm wondering if the hormone therapy can be put on the back burner, and do it if and only if the PSA isn't zero, or starts rising in the future (or is it too late by then, forcing me to undergo even more aggressive radiotherapy)? I'm not sure how to properly google that, but that's my next exploration.

Thanks again!

Profound thanks, moonrakerz!

Indeed, it wasn't the oncologist who predicted horrible side-effects to hormone therapy, and as you concluded, it was negatively affected "reviewers". That's unfortunately the nature of reviews.

When you say you had "a different sort of Radiation Therapy", would you mind sharing a bit about it? Or perhaps I'll find it in your profile, which I plan on visiting next.

Thanks again!

Thanks Munster, incredibly useful as always. You said "find a surgeon who will do nerve sparing" (I suppose "preserve the erectile nerves"?)... my (really bad) urologist claims that it would increase risk of recurrence (ditto with lymph node bundles), hence his atila-the-butcher approach of removing everything in sight. I'm praying the universe to grant me the belief that it isn't so, but... did you research the impact of "nerve sparing" on long-term recurrence / survival rates? I plan on researching it, so I'm just checking if your past experience can give me a head-start in that direction. Huge thanks!

Very brief background. I was referred to my nearest RT capable hospital (20 miles away) for treatment. I was refused ..............because I have 2 replacement hips - I was sent back to my diagnosing hospital. They referred me to another hospital (45 miles away) - I took that. I went there for my Planning appointment - no tattoos given nor any enema kits passed to me. My hips seemed to provoke as much interest as the colour of my socks !  

www.uhs.nhs.uk/.../hospital-trust-rolls-out-state-of-the-art-radiotherapy-technology-to-treat-cancer-patients

I had 20 sessions of RT; at the first one I specifically queried the problems possibly being caused by my hips - "no problems" I was told !  They were right, the whole thing was an anti-climax. Before my allotted time I was told to "start drinking"; I emptied my bladder and drank 500mL of water in 10 mins, then 20 mins later I had the treatment - nothing could have been simpler.  

All the NHS/cancer websites seem to talk about IGRT, what I received was SGRT. I have been really surprised how few places seem to offer SGRT..................OR, perhaps they do and the results have been so good that people don't post on here.  I had never heard of SGRT, until I had it done on me. I have asked on this site and only a couple of people were aware of it. It is widely reported on the web, Wiki gives a fairly simple guide to it, you can dive in much deeper from there.

I was treated at a large NHS teaching/University hospital, they had 6 Linacs, all fitted with SGRT. The whole experience there could not be faulted - despite the 90 mile round trip every day ! I ended up at the BEST hospital - without a doubt.

(90 miles may not be far in Canada - but it is here !!)

Latest PSA - 0.02