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My brother was just diagnosed with small cell carcinoma of the prostate. He has a PSA level of 67 and a Gleason score of 4 + 5. After telling my brother that he had 6 months to live, the urologist scheduled him for another visit in a couple of weeks. We made an appointment with a medical oncologist and he'll be seen on Friday. They squeezed him into their busy schedule after getting copies of his lab and biopsy reports.
So after reading your site, he needs a staging score and some tests to see how much of his body the cancer has invaded? Those are primarily the next steps?
Your brother's numbers are about those I had when diagnosed five years ago. Not only am I still here but I expect to be for many years yet. Unless scans have been done and evidence obtained that the cancer has spread, it should not be assumed that it has. Even if it has, there are lots of treatments that should prolong life.
Others will reply with more expert advice. I just want to urge you and your brother to be positive about this thing and prepared to fight to hang on to the life you enjoy.
Cheryl,
I am very sorry to hear about your brother. Nothing you read on this site is really appropriate to your brother's situation. I am not even sure that a Gleason Score means anything and PSA means nothing. Small cell carcinoma is really a completely different disease than regular prostate cancer. Your brother will probably go straight to chemo treatments and then on to experimental drugs. I would suggest you try reading some of the pubmed (google PubMed)articles but they are not very encouraging. I am sorry I can't say anything more positive but you should understand the situation before you visit the medical oncologist on Friday otherwise you probably will have a hard time even understanding what he is telling you. Take lots of notes and have a few people at the meeting as it will not be an easy meeting, even for the doctor, and it is hard to absorb what you are being told.
Thanks for the advice. We've already planned to have another person present with him at every doctor's appointment. My husband had blockage of his carotid artery (90%) so we're familiar with the shock that the person getting the diagnosis experiences. I had to tell him everything several times before it sank in.
Small cell variants can be very tricky for control with drug therapies and treatment. Suggest you consider atleast opinions from some of the most experienced oncologists in PCa (Dr. Scholz, Lam, Sartor, Leibowitz, Myers and some others). They have treated all types of patients and at every stage and have some better results (it appears). There are some unique therapies that some of those doctors can or do use, but hospitals or cancer centers are sometimes confined to use only certain protocols for many reasons, thus all treatments are not the same and results can vary.
Do not assume anything and question everything and get more than one opinion, even from oncologists. This is mighty serious for your decisions in this. You can join support groups like nationally www.ustoo.org Newsletters like 'Choices'- free pdf online file: www.paactusa.org See websites like: www.hrpca.org (proven treatments) and www.prostate-pointers.org (groups-forums) and www.healingwell.com (prostate group forum).
Expect to see various types of possible drug choices, even if not all readily mentioned to you. Best to you in this.
Thank you for the information. I'm sharing it all with him.
He had his first meeting with his new oncologist on Friday and he liked him very much. He confirmed most of what we'd already read on the Internet. He receives his first treatment on Tuesday.
My husband was diagnosed with small cell prostate cancer in April, 2013. He had four rounds of chemo and 30 radiation treatments. The cancer had only spread to his pelvic lymph nodes at diagnosis. He handled the treatments very well and, as small cell cancer usually does, response was very good and the tumor size was significantly reduced, leaving him with a much better quality of life.
However, his oncologist will not discuss prognosis. All of the literature I have found on small cell shows a very poor prognosis, in general. I know that he is in an 'interval' right now, but that is all I know.
This has been such a nightmare and it continues to be. I'm wondering if anyone out there could take some time to write to me about their experience with small cell prostate cancer. I feel so very alone. There are several other reasons why this is particularly difficult for us and it feels like a mountain of misery has been heaped upon us.
Sorry to hear about your husband, Laura. I am also sorry to say that I cannot be of any help. The annoying thing is that two or three years ago i did find some less negative material about small cell disease, but alas! I have cleared out so many files since then that they must have gone too. I see I sent some information to JOE ECKER when his brother was diagnosed. perhaps if you amil him he can give you some information.
The problem is that it is a rare form of the disease so there are not many men who can share their experiences. I don't know if you have come across the HEALING WELL site? It is a very busy site and there may well be more chance of finding someone with small cell knowledge there
