I've scoured hundreds of the posts on here to try and get as much info as possible, really grateful for all the info you've shared. And for the fact it's easy enough to understand that even someone like me can follow it!
My father is in his mid-50s and has just been diagnosed with PC. His PSA was around 80, gleason 8 (doc said one of the cores is between 3 and 4 and went with 4 to be safe...whatever that means). He has heavy prostate involvement and one lymph node in pelvis and one tiny lymph node in abdomen. They're not 100% sure the one in the abdomen is cancer but they don't want to risk it regardless. He also has no other health problems and is super fit and healthy. Unfortunately it runs in the family - seemingly, quite early on and aggressive.
I don't understand why he can't have an RP surgery to debulk the cancer and then do radiotherapy or chemo for the lymph nodes? Am I just being a bit naive? What I'd like to know is the best treatment for length of life and quality of life. I don't want to lose my father early, but I also don't want to lose him to a poor quality of life and 'just surviving'. The oncologist has suggested chemo and radiotherapy, but I can't tell if that's the best option for someone so 'young'?
Thanks so much and sorry for the length!
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lollapalooza123
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Determining whether the abdominal met is cancer (stage M1a) is important. If it isn't in a place where it can be easily biopsied, you can just see if it shrinks with hormone therapy.
Assuming it is a met (and his high PSA suggests that), his best option is:
Debulking with radiotherapy will minimize side effects and help maintain his QOL better than a prostatectomy). Chemo is an excellent option to do early, and will have much better results now vs later. Younger, healthier men will also have fewer side effects. After that, he can move onto abiraterone. Some very new data suggest that combining them may be optimal.
If the abdominal lesion is not metastatic, he is at a different stage (stage N1), and potentially curative therapy can be pursued. That would entail whole pelvic radiation with a boost dose to the prostate and 2-3 years of hormone therapy.
Thank you so much! Also I should've been clearer, they think the abdominal met is a lymph node. It's too close to something (a nerve possibly) for them to get to, but that is the assumption. So that would be two lymph nodes - one in pelvis one in abdomen. Hopefully yes they can shrink with hormone therapy, and then move on to other options.
But would RP surgery not debulk it now, and then leave radiation as a possible treatment in future?
I should have been clearer. I understood that the abdominal lesion may be a cancerous lymph node. What I'm saying is that it's important that you know for sure. Since it can't be biopsied, if it shrinks while on hormone therapy, then it is a cancerous lymph node.
If it is a cancerous LN, radiation will debulk the prostate. Radiation can still be used palliatively on future metastases.
Ah I see, so if on the next scan it has shrunk then it means the hormone therapy has worked (and it was definitely cancer)? Thanks I think the general feeling is that radiation is best for now
Thank you for this! We actually have an appointment with an oncologist at this very hospital this month so fingers crossed they'll have the best treatment for him.
"But would RP surgery not debulk it now, and then leave radiation as a possible treatment in future?" Yes, it would, you can do surgery instead of radiation which I recommended. However, with radiation you could, at the same time, also radiate the lymph node in the pelvis.
Hi I was diagnosed at 46. I talked to multiple surgeons before I realized that that the pelvic salvage radiation is as effective as surgery but it also treats the entire pelvic area including lymph nodes. Early on I took the ‘kitchen sink’ approach and hammered it hard out of the gate: ADT, radiation and concurrent chemo. Chemo was rough but I did fine - it sounds like your father would tolerate it well too since you said he is otherwise healthy. Be sure to get the genetic testing of the prostate cancer done immediately - I used Foundation One. It can point to opportunities that may exist with immunotherapy. Stay strong and remember his is a marathon not a sprint
Thank you for this, it's really helpful to hear other people's experiences. I wish he could join this forum or talk to his friends/guys but for now he's (understandably) struggling to face all of this. As you said, a marathon not a sprint.
I'm really glad immunotherapy was an option for you and worked so well (based on your other posts). It must have provided a lot of relief and I hope you're doing well now.
Chemo, ADT and radiation seems to be gold standard, he mostly wants to do surgery to just 'get rid' but of course we'll listen to as many opinions as possible. He's also been invited to get genetic testing so fingers crossed!
The problem with surgery is won’t get rid of it if it’s metastatic and in the lymph system. I wanted the same thing, but the radiation is probably more effective as it treats a larger region including close proximity lymph nodes and they don’t need to cut you open, less risk for urinary incontinence.
Hi thank you for sharing your Dad's story. I have a similar but not exact case as your Dad. I am in my mid-Fifties (56) and was diagnosed in March with Gleason 9 PCA with intraductal histology with PSA of 10.1 and likely extraprostatic extension and a questionable N1 pelvic node CT and bone scans were negative. My initial plan was to go the prostatectomy route until I did a lot of research spent a lot of time in groups like this with members like Tall_Allen and many others that provided great information. I also got myself to a major cancer center (MSKCC) and spoke with a surgeon, Medical Oncologist and a Radiation Oncologist (actually 2). My decision was to go with ADT + abiraterone for 10 weeks then HDR Brachy Therapy followed a month later with External beam radiation. After the Radiation therapy the plan is to be on the ADT+abiraterone for 18 months. There is no guarantee this treatment will work, but I am confident in my decision for treatment. One of the important things is to gather all the information and make an informed decision and move forward and don't look back. We all are an N of one and have to make the decision that is best for us. For me I have just started this journey I am almost 8 weeks into the ADT+abiraterone therapy with tolerable side effects so far with my PSA going from 10.1 to 0.7 in the first month. I go in for my HDR Brachytherapy at the end of July. I wish your Dad well as he comes up with his game plan.
Hi thank you for sharing your story too, it is pretty similar actually. I'm glad the side effects aren't too bad and that your PSA has gone down! Wishing you well and hope things continue to improve.
For some reason brachy isn't an option for my father but radiation certainly is. It's looking like surgery may not be the 'ideal solution' we were hoping for, but we're taking every bit of info and recommendation seriously
One other thing - get a couple of opinions before settling on a course of action, talk with a medical oncologist and a radiation oncologist in addition to urologist. I was diagnosed in Alaska and ended up traveling out of state to a hospital with a dedicated urologic oncology department. Those semi-retired doctors in Alaska just thinking about fishing, did not have the focus I was going to need.
Hi. I tend to agree with those that recommend radiation +seeds+2 yrs adt since it may have escaped the prostate. However, if your dad really wants surgery one option to consider is an nih trial I was on which combines intensive adt for 6 months followed by surgery. This gives you both systemic treatment to get at the cancer that may have escaped and getting rid of the prostate itself. It also gives you a psma pet scan half way through to check how the intensive adt is working. A potential chance for a cure (about 20% had a complete response) with the option to follow up w radiation if there is recurrence. All done with top care by a leading surgeon at Nih. I can also add that NIH was very easy to work with and involved no payments or insurance. I had Gleason 9 (but without any outside the prostate) and so far (one year after surgery) so good.
Thank you for your advice regarding the surgery, though I'm not too sure what NIH is as we're based in the UK. The surgeons here don't seem too keen to do surgery (may be a matter a cost but who knows)...
Glad your systemic treatment went well and that you're doing well now, I hope it continues!
Everyone has lymph nodes. They are essential to your body's maintenance. Are you dad's LN's cancerous? Have a long talk with your doctor and then get a 2nd or even 3rd opinion. You never can have too much knowledge. You can't make an Intelligent decision without it.
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