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Just diagnosed with locally advanced prostate cancer 59yrs in Ireland

Aodh profile image
Aodh
9 Replies

Hi, I just been diagnosed with locally advanced prostate cancer, with a rising PSA, now at 87, up from 67 a month ago. The Staging is cT3bNxMx with bilateral extracapsular extension and seminal vesicle involvement. There is no imaging evidence of bone or lymph node disease. However the MRI guided biopsy was assigned a Grade Group 5 result. The Urologist and I agreed that as surgery would not remove all of the cancer there was no point in going through its toxicity only to still need radiation and ADT treatment given that I also have a heart condition. I’m seeing an oncologist on Friday to discuss ADT and radiation therapy options and would welcome any advice and or questions that I ought to ask as I’m a bit burned out researching all of the therapeutic options and drugs plus their unwelcome effects. I’m 59, single though have family but unfortunately there’s more agendas than family members; so I’m left feeling unsupported and under attack to accept their agendas! Thanks in advance

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Aodh
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Tall_Allen profile image
Tall_Allen

The therapy that has the best results for your diagnosis is brachy boost therapy = external beam radiation plus a brachytherapy boost to the prostate. You have to talk to a radiation oncologist who has experience in delivering both kinds of radiation.

pcnrv.blogspot.com/2018/03/...

Aodh profile image
Aodh in reply to Tall_Allen

Many thanks, I’m seeing a radiation oncologist on Friday, I’ll ask him if he has experience of both types

Bcgkelly profile image
Bcgkelly

The best of luck to you on a tough road. I’m also in Ireland. Had surgery last year in Cork University Hospital and just finished Stereotactic Radiotherapy last week in the Beacon Hospital, Dublin. The best advice I can give you is do your research and go for the best treatments that suit you. Make sure you know in advance the likely outcome and side effects. Ireland’s a small place make sure whoever you are going to be treated by is experienced and in a cancer centre. If I can be any help or support let me know.

Nadem profile image
Nadem

Dear Aodh,

I have gone through a simular experience. My Gleason score was 7 and received different advice. To get different opinions I went to Amsterdam, Antwerp in Belgium and Gronau in Germany. In the latter hospitals they advised me to operate via the Davinci robot technology.

Finally I went to the European prostate center in Gronau and got my prostate removed. It is now 3 weeks later and I am fully recovered. No problems with incontinency. After 3 months I have to check my PSA level to see if all cancer has been removed.

Bear in mind that if you opt for radiation treatment that you cant be operated afterwards but if you can get an operation first you can still get radiation treatment afterwards.

Each case is different and what applied to me may not apply to you, but I found that I had to realy dig into all available information so that I could make a choice of treatment and not only leave it up to the professionals.

Wish you all the best and a speedy recovery.

Fred

I do not have any great advice to give. I wish I did. All I can say is that I had the EBR and Lupron when my PSA began to rise several months after a RP. I get another PSA test in three weeks. The EBR is painless but of course the Lupron is very unpleasant. At least that was my experience. Usually the Lupron is begun a few weeks before the EBR as the theory is that it weakens the cancer and makes it more susceptible to damage or death by the radiation. I had NO problems, so far, with any damage to the bowel, bladder etc. but I feel I had a VERY GOOD radiologist. He and his team had a foam mold made up to help my legs stayl in the the right position and he insisted that I drink a fixed amount of water, to help protect other organs, a short time before the EBR. Good luck to you my friend. -Carl in Florida

EdinBmore profile image
EdinBmore

Good luck to you in Ireland!

To state the obvious: read as much as you can, watch videos of the procedures, talk with docs and laymen alike. Ask your questions and make sure you know as much as you can before making your decision about which type of treatment makes most sense for you.

I found two books to be particularly helpful in describing what to expect: Patrick Walsh's "Guide to Surviving Prostate Cancer, 4th ed.;" and "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones." Also, check out the National Comprehensive Cancer Network's website. It details the diagnostic criteria and treatment recommendations used by doctors in making their recommendations re treatment. For example, if you have x, y, z characteristics, then, these are your treatment options based upon the most recent review of the literature. Btw, you'll learn a lot of jargon and alphabet soup of abbreviations for all the treatment options.

Based upon dx and my personal/medical characteristics and recommendations appearing in NCCN Guidelines, I opted for a trifecta of treatments: ADT prior to, during and after radiation; beam radiation (IMRT), and a LDR brachy "boost." The ADT has been - and continues to be - the worst part of my experience. I've found the drug, Lupron, to be devastating but, with only one more injection on the horizon, I'm hopeful that I can begin to return to some kind of normal (in terms of mood, sexuality, and so on).

Hope all goes well for you. Keep us posted.

EdinBaltimore

Terp2017 profile image
Terp2017

Wishing you peace with whatever decision you make. Second guessing is useless. Seek out others to talk to whether online or in person to share your feelings so you have a relief valve.

Shawn

Dreamweaverman profile image
Dreamweaverman

Hey Aodh, It seems like you are taking necessary steps to get all the information available to you. I am currently on week 6 of radiation therapy and besides having to go to bathroom a little more than usual it is very doable. In addition, I am doing Androgen deprivation therapy, and that has been a little more emotionally challenging for me, but is definitely doable. Before I started both treatments the guys on here encouraged me to keep my head up and take action, and that it would be over before I knew it. Although I am not finished with treatments, it has been surprisingly less hard or stressful than I imagined. Good luck with whatever treatments you decide to do.

nacinla profile image
nacinla

Good luck with your search for the best option for you. Take time to do that research. I was probably two weeks away from surgery in early 2014 (Gleason 7, 3+4; stage 1; PSA 5.3) but found a knowledgeable group here in Los Angeles (see Tall Allen herewith!) and opted for SBRT. On hearing that, a very good surgeon snapped at me, "What are you going to do when radiation fails?" I told him I wasn't planning on it failing. When all you have is a hammer, everything looks like a nail. You will hear, as here, well-meaning warnings that "you can't operate after radiation but you can radiate after surgery." That is true. But surgery is rarely the second-line approach if the first fails. It's nearly always some form of radiation and pharmaceutical. (Tall Allen will correct me if I'm wrong on that.) My point is that it didn't make sense to me to make my decision based on holding radiation out in case the first option failed; that option was there anyway. My five-year end-of-treatment anniversary just passed; my PSA has fallen from a high of 6.0 before treatment to 0.1. No one can guarantee what may happen in the future, but I have a feeling if this demon rears its head again, there will be radiation and drugs to combat it. I don't think that's going to happen. Good luck!

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