Prostate duct cancer

Hello Paddy72 .

Sorry to hear that you are having a bad time of it at the moment but welcome to this family. You may not get many responses from people with ductal prostate cancer because it is rare. My husband has a different kind of rare PCa, diagnosed in July 2020, which also does not express PSA but is classified as aggressive. The scans will tell you whether there is any further spread and this will dictate the treatment you will have. The waiting for tests and results is the frustrating bit that we all experience because we just want to know what we are dealing with and we want it dealt with now. For most aggressive cancers the first line of treatment is usually Androgen Deprivation Therapy (ADT) which will starve the cancer of its food. This then gives time for other therapies to take place which could be prostatectomy (but only if confined to the prostate), radiotherapy or chemotherapy. The main challenge with these rare cancers is how they are monitored after treatment because they do not express PSA, unless you have a mixed form. Most literature is limited but I have found a review if you want to read it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9875213/

The limitation is that it is retrospective and there are now an increased number of different hormone therapies available, plus radiotherapy techniques have come on in leaps and bounds since then giving greater accuracy and success rates.

I have also attached a link to guides on treatments which may be used.

https://prostatecanceruk.org/prostate-information-and-support/treatments?category=

Please ask any questions or just join in with conversations as it is our forum and even though there may not be many with your particular form of cancer we have a lot of experience on dealing with the different types of treatments.

You are only at the start of your journey which is the most difficult time. Things do settle down and the one comfort we have is that the oncologist says he now has more tools in his toolbox. With these rare cancers we have found that the best way to monitor them is with regular MRI'S and when there is a small increase in PSA get it investigated as soon as possible. The other thing we have found is that some treatments work better with rare cancers than others, or may not work for as long as hoped for BUT there is always something else waiting in the wings, plus there are trials with newer treatments like immunotherapy which might be a possibility. 

Hi Paddy72 and welcome to the forum. you have a sub type of mine I have intraductal adenocarcinoma which also produces very little PSA. I am on hormone therapy HT from July 2022, and had radiotherapy RT April 2023, which have worked better than hoped. PS I was also on the bladder forum but my treatment has shown NED regarding the cancer in my bladder and bowel and shrunk a tumour in my rectum enough for it to be removed. On the downside my cancer means my biochemical recurrence BCR free times are reduced, though there are other HT available as well as other treatments, which Alwayshope  can explain much better than me, best wishes with your scans, I think the waiting is bloody frustrating take care

Eddie

Hi, It's been a while since you posted and was wondering how you are doing, hope you have had all your scans and didn't have to wait too long, and I hope the resection of your bladder went well, we are always here if we can help you in any way, best wishes with your treatment plan, take care.

Eddie

Hi all sorry for the delay on updating my post.My scans showed a 18mm tumor in my prostate which broke the prostate capsule and went into my bladder.All the other scans were clear thank god.The waiting was so frustrating.My oncologist thinks he may be able to get rid of the cancer but no guarantees 

So I have started treatment.i have to get 6 doses of docetaxel chemo 3 weeks apart which started 2 weeks ago.I am also on darolutamide which I take every day and I have a 3 monthly injection of decapeptyl. The first dose of chemo wasn't too bad in hindsight but at the time I thought it was because I really didn't know what side effects I was going to get.It was mostly fatigue and loss of appetite because the metallic taste in my mouth.I also had diarrhea but had meds for that.I seem to have a lot of wind at the moment which can be a little embarrassing .The worse days were days days 3-7.I know the side effects will probably get worse but fingers crossed it will be worth it

Hello Paddy72 

That's a very encouraging post and I am so pleased with your oncologist's comments:

Paddy72 said:

thinks he may be able to get rid of the cancer but no guarantees 

The treatment regime you are on is the latest "Triplet Therapy" introduced last year and is designed to hit it hard, hit it fast. 

i wish you well with the treatment and you appear to be coping very well with the side effects, please keep us updated with your progress.

Best wishes - Brian.

Morning Paddy72. no need to apologise you have been through a lot lately, wish I could help with your chemotherapy but not had any myself "yet", but did have bladder involvement with my PCa which was successfully treated with radiotherapy, ifyou have a couple of slightly unripe bananas a day that usually sorts the wind problem. best wishes with treatment and I hope the side effects are kind,  take care 

Eddie 

Hi Paddy72 

This is great news that you are on your full treatment plan with the Triplet therapy. When hubby was having chemotherapy last year we found that each cycle followed the same pattern and even though we were warned the side effects might get worse the more cycles he had this didn't happen in his case.

The wind is because the chemo has killed off the good bugs in your gut as well as the cancer cells in your prostate so your digestive system has gone a little bit out of kilter. You can help this by eating little and often of a good balanced diet - something every 2 to 3 hours. Also try and eat softer foods and preferably well cooked. Also don't eat anything with raw egg in it (but generally limit them) or yoghurt unless you pasteurised it for a few minutes at 72C - this applies to anything with a pro-biotic in it as it can cause overgrowth of a limited range of bacteria and yeasts. Salad leaf can have a lot of the bugs you don't want at the moment so make sure it is well washed. Spicy and acidic food and drink can irritate the gut and cause wind, as can caffeine. Fruit should preferably be peeled. Don't eat soft cheese like Brie. Hubby also found the loud eruptions an embarrassment but we soon sorted it with the diet modifications. He also went off his food so eating little and often made sure that he had enough food inside him to help repair the damage caused by the chemo to the good cells.

Hi Paddy72 , that’s really good news with the scans and also positive that you are tolerating chemo well.  I think you will sail through the next rounds but just be careful with your  reduced immune system.  Are you getting any side effects that you can pin down to Darolutamide?  Think it is where I am heading next so quite interested.   Best wishes, David.

• Hi David2017 I only started on the Darolutamide 2 weeks ago.I had a few hot flushes after my chemo so don't know whether it was the chemo or Darolutamide that caused them.I have no side effects at the moment but as they say everyone reacts differently to these medications and it might be too early to say.I hope it all goes well for you