I am a 68 year old male, recently diagnosed with prostate cancer which is apparently a rare Ductal type. I always had a normal PSA and negative DRE until I had a kidney stone and my PSA jumped to 7.9. My doctor decided that the PSA score was elevated due to the kidney stone and the effect of antibiotics. After removal of the kidney stone I had no other symptoms until approximately 6 months later when I noticed a small amount of blood at the beginning of my urine stream. During a cystoscopy the urologist observed what looked appeared to be string like growths in my ureter close to the neck of the bladder. Then along came COVID. After a wait of six months they performed a TURBT procedure and the pathology of the tissue confirmed a rare prostate cancer variant. Initially they told me that it was still contained within the prostate capsule but an MRI showed that it had spread to the seminal vesicles and possibly the pelvic floor. They further noted that one lymph gland in my leg was 9mm so that may also be involved. It was recommended that surgery was not an option and I was transferred to an oncologist. I had an Eligard injection 2 weeks ago and another scheduled in 6 months. I have radiation therapy scheduled to commence in March 2021. I am now at the acceptance stage of the grieving process after 2 months of fear and worrying. The hormone therapy side effects haven’t kicked in yet. I think I’ll get those as a Christmas gift. If there is anyone out there who has experience with this type of Pca I would appreciate any, and I mean any, advice and insight. From the little that is published about this form of prostate cancer I have gathered that only 1 in 3 men will survive 5 years due to the aggressive nature of the beast that is known as Ductal Prostate Cancer. It’s ironic that while working in architecture over the past 25 years, much of my work has been spent designing and supervising projects at the Cross Cancer Clinic. I have worked on two cyclotrons, multiple MRI suites, a Tomotherapy vault, numerous Linac vaults, and recently a vault for a groundbreaking Linac/MRI machine which is currently in clinical trials. I used to walk through the radiation treatment vaults in this facility and see the patients waiting for treatment. I always felt for them and I can recall thinking “there but for the grace of god go I”. Now it’s my turn, and I will shortly see those vaults again, but this time through a new pair of eyes.
Thanks for taking the time to read this.
Robert Timms
Written by
TottenhamMan
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I am so sorry for your situation! I do not have ductal PCa, but a prostatectomy found metastasis to the bladder neck and urethra, so inoperable. I'm not sure how I can help you, other than just to listen and send good wishes to you.
I was in IT for 29 years and involved in the buildout of 24 retail sites, so when I go for scans I'm always more interested in the technology being used than the usual patient.
I suggest you ask for counseling for yourself, and later include your partner, if any in counseling sessions. It really helps to have someone - friend or family - to make the mental cancer journey with.
The stages are very real, and the grief is profound, not in a pleasant way. Find someone local to talk to. The process of explaining your situation will go a long ways toward helping you understand it yourself, and change how you think about it.
Do your own research! Look online for anything relevant to your cancer, but also anything relevant to your state of mind. Take control and responsibility for your own care. The strongest advocate for you, is you. Always ask your doctors about your options. Ask if there are any clinical trials available to you. Always ask for second opinions when a diagnosis is given - i.e. my cancer was Gleason 4-3, but the second opinion was 4-5, which changed how I thought about my options.
Contact the large regional cancer centers and ask if there is a specialist in your type of cancer there. Your ductal cancer is rare enough that there may only be a few real experts, and you may need to aggressively pursue them to get in to see the best in that field.
Anger is appropriate, but channel the anger into aggressive research and pursuit of resources.
Thanks for your words of advice CreativeOne. In my field, when the IT subcontractors show up on site they are always the “prima donnas” of the construction workers (along with the Elevator subcontractors) because nobody else understands the complexity of their work. I have a good oncologist who specializes in prostate cancer and she is a straight talker, which I appreciate. My brain is still at the “tumble dryer” stage as I try to process all of the information regarding this parasitic disease. I’m glad that my attention was drawn to this site and I’m glad that I found it. I’ll update my journey along the way, for better or worse. I’m currently in the ADT carriage on this oncology train, and just waiting for the upgrade to the radiation therapy carriage. Thanks again.
There is a big difference in prostate cancer that has only spread to the bladder (stage T4) or pelvic lymph nodes (stage N1) and prostate cancer that has metastasized to distant places (Stage M1). The difference is that your PC may still be curable with dose intensification of radiation and advanced hormonal agents. Even with ductal PC. The prostate and pelvic lymph nodes should be treated with brachy boost therapy - there is really no other good option. For brachy boost therapy, I recommend you see Peter Hoskin at Mt. Vernon Hospital in Northwood. You will also need 2-3 years of ADT with it - possibly with an advanced hormone therapy like abiraterone. Possibly chemo as well.
Brachy boost therapy= external beam radiation + a brachytherapy boost to the prostate. It has been proven to be much more effective than external beam radiation alone in unfavorable risk patients.
Tall Allen, you write "possibly chemo". Could chemo be warranted asap for a GS9 intraductal cancer with T3N1M0 after brachotherapy and together with ADT? I understand it is warranted with confirmed mets in the bones, but is it so also when only in the lymph nodes?
Do you have ductal or intraductal (IDC-P)? They are different. If ductal, I think you should consider hitting it with chemo. Chemo has been shown to improve results for high risk PC ( which would include T3), but not by a lot:
But with N1, and ductal, there is certainly a better case for it. It's worth discussing with your oncologist, or see what your RO has to say about it as an adjuvant therapy with brachy boost.
It's intraductal in two out of 16 samples. Both comments you made were on ductal. GS9, PSA 1.7 at dx, T3N1, 50 % risk of M1 to be confirmed or not in April maybe will get a clue tomorrow with a new ALP.
Hi TA, thanks for your insight. Even though I am an unfortunate rookie in this club I can see that you are a very well read and extremely resourceful contributor. My oncologist specializes in prostate cancer and on my first consultation she said that there may be a very small chance of a cure. I now understand that the term ‘cure’ when used in this context means a cancer free status for at least 5 years. I listened to those words and then packaged them in a box and put them away. I have read too much here rely on what may be false hope. Personally speaking, I am embarrassed to admit that I had no prior understanding of how complex and serious this disease is until I was diagnosed. Now I am horrified by what I have learned. As I sit here in the knowledge that I have this condition, I have no pain, no visible hematuria, and I’m guardedly waiting for the appearance of ADT symptoms (I’m 3 weeks into the program). It feels like the calm before the storm. My brain is still racing around the big circular track and I’m looking for the off ramp. I know that given time I will find it.Thanks again TA.
Between this diagnosis and Covid-19, you have been very unlucky. I wish you more luck in the coming year. "Cure" isn't really a defined term for prostate cancer (there is no time limit). Some doctors prefer to say "no evidence of disease" or "lasting remission." I use the term to describe myself because I used a curative therapy - I'm cured, unless I learn otherwise. It's an attitude that helps me.
The ruminative thinking comes with the territory. I'm sure that your (literally) fevered brain adds to it. It got so bad for me in the beginning that I sought out psychotherapy and learned to practice mindfulness - they both helped me a lot.
I hope your oncologist will allow you to consult with Peter Hoskin.
I had a ductal adenocarcinoma Gleason 8, PSA 5.2. Pathology after surgery showed it was contained to the prostate but I had a 2 mm focal margin upon removal. That was 2.5 years ago. PSA has remained <0.02 ng/ml so far.
Mine is Gleason 8 and my PSA was 12 upon diagnosis. They chose not to remove my prostate. I’m still not fully sure why they didn’t remove the damn thing.
You will handle your treatment well I am confident. May I suggest adding to your traditional oncology regimen, an over-the-counter supplement which has worked for me: but it would be advisable to begin with the cancer researcher’s text on the substances “Inositol Hexaphosphate and Inositol “. That in fact is the title of Dr. AKM Shamsuddin‘s text on the research he has conducted over the past 25 years at the University of Maryland medical school. Of course there are many other cancer researchers discussed in the text. Also, you will find my previous posts on Dr. Shamsuddin useful. I will pray for you.
Thanks for the advice CalBear. I have followed your guidance and I’ve already ordered the Inositol IP6 supplements. I noticed that this supplement is also useful for preventing calcium buildup in the artery walls, which I was diagnosed with 10 years ago, so it is potentially a double benefit in my case. I would never have found out about this without your advice, so thank you very much for the help.
I have intraductal carcinoma, see details in profile. I had a great initial response to treatment, and ran a half marathon to celebrate a year of survival last October. That's the good news.
This type of cancer doesn't put out as much PSA, so it was missed by routine screening. My PSA went from 2 to 216 in 13 months and by that time had spread far and wide, but strangely the left half of my prostate was still virtually cancer free. If yours hasn't spread very far, try to eradicate it now.
Now the bad news: rumor had it that intraductal is more likely to transform into a very deadly neuroendocrine form. Mine did that late last year, responded to platinum chemo, and then came back at the end of September. I have a scam tomorrow to see if cabazitaxel chemo is doing anything, and based on blood work and how I feel I'm preparing myself for the worst.
Neuroendocrine puts out 0 PSA. Mine developed with PSA <0.01, so routine scans are highly recommended. I didn't get them so things were a bit out of hand by the time I was diagnosed.
Thanks for the reply Tom. I can see from your experience that I am on a road we’ll travelled. I sincerely hope that everything goes as well as it possibly can for you. You are obviously a very positive person and I am going to try to follow your approach and be more positive. Thank you for your advice.
Thanks for the reply Boywonder. I am Gleason 8 but with no Mets at this point. I’m 3 weeks into ADT so I have no idea how the treatment is working thus far. No side effects yet, but I’m waiting for them to show up for the party.
"but this time through a new pair of eyes."I drove uptown past Memorial Sloan Kettering cancer center on First Avenue many many times and would think about the customers (no longer called patients) in there being treated. So I too had the feeling of "but this time through, I'm the customer being treated". We have an old joke with part of a punch line is "it's your turn in the barrel". So I guess it's our turn...
You can take this to the bank, "you will be here for a very long time". Just remember to live your life and laugh as much as you can. Keep posting here for up to date info and camaraderie. BTW many members here are from Canada, so you're in good company.
Thanks for the reply j-o-h-n. When I went to the Cross Cancer Clinic 3 weeks ago to get my 6 month Eligard injection it felt very unusual. I could see the construction hoarding around the new CT SIM vault that we are doing but this time, for the first time, that was not where I was heading. I was heading for the barrel. I am learning from yourself and others on this site that being positive and living your life fully is vitally important. If those are the rules in this club then I’m only too happy to comply. I’ve learned a lot already after reading the information made available here. Thanks again.
hi Robert .... really sorry to hear of your challenges ... it can be super, super stressful ... i know ... you may want to check-out envita.com ... best wishes ... Nous
Thanks for the reply XPO1. I’ve just purchased a Bowflex max trainer and a Treadmill so I will be upping the exercise game shortly. I’m still waiting for the ADT side effects to kick in and I’ve noticed that my mood is a bit flatter but that may just be a natural consequence of the after effects of the initial diagnosis. Have a Merry Christmas, or the best that you can under the current Covid19 circumstances.
Thanks for replying Nous. In my career, the ability to absorb stress is a prerequisite. However, this is a totally different kind of stress. In business you can attack the source of the stress and mitigate it. This type of stress is totally different and it frustrates me that the source is outside of my ability to control it. I will check out Envita, but living in Canada puts it outside my reach at the moment.
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