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Decipher risk: prostatectomy RP vs radiation.
Prostate Cancer | Last Active: Mar 14 11:09am | Replies (75)Comment receiving replies
I was in the same spot as you with surgery vs radiation (my decipher is .9) and I chose RARP without hormone therapy. My PET scan (not PSMA) showed no spreading of the cancer. In another post I explained why I chose as I did and how it turned out (at that point). Here is the latest so you can have some info: 18 months after my RARP my PSA rose to official BCR status (surgery failed). Biopsy of prostate and some lymph nodes showed negative but sem ves were invaded and there was some evidence that surgery didn't get all the cancer. BTW: for me urinary side effects from surgery didn't happen. For what it's worth, the post surgery biopsy is information you don't get from radiation.
PSMA Pet scan showed 2 spots of cancer, one in hip and one at a lymph node. Since there's less than 2 they term it oligometastatic. Not great news. But last week I saw Radiation Oncologist locally and Dr. Kwon's team at Mayo. They want to SBRT the hip cancer spot (one and done) and then do a broader radiation therapy (5 weeks, every day) for the pelvic area. This week I will start Casodex for 2 weeks, then Eligard (6 month dose) for 2 years. I also get fitted for my personalized "bean bag" for the SBRT. Both cancer teams used the words "potential cure" in association with the treatments. (The broader radiation is still under review with Mayo and may change.)
Sorry this so long, but the point is that this is the option I left open by doing the surgery first. I'm too ignorant to know what I don't know, so I have to trust the Doctors but I have to say that they seem long on positives and short on details especially when it comes to side effects of both RT and Hormonal therapy. In for a penny, in for a pound.
Keep the faith and remember that we're all blessed in abundance or in need.... Peace!
Replies to "I was in the same spot as you with surgery vs radiation (my decipher is .9)..."
@larrypt3b
First, thank you for all of this really helpful information. It confirms my thought process that starting with surgery leaves more recurrence treatment options later. That is huge for me-so thank you!
Second, so sorry you're going through all of this. But, amazing the doctors are using the language of potential cure. I don't think they say those things casually. And wow, no major incontinence issues. One of big concerns for sure. Figure ED is a done deal.
Question for you, you mentioned that your first PET scan was not PSMA, which uses an isotope designed to target prostate cancer cells. Have the doctors indicated if that not having a PSMA PET scan is why some of the outside involvement wasn't detected? Your post prompted me to do some homework on the PSMA scan, and I see that it can miss cells in certain situations.
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@larrypt3b
You really should ask them to give you Orgovyx Rather than Eligard. When you finish your two years, you will be back to normal within three or four months with Orgovyx. It will take a lot longer for your testosterone to return if you have Eligard. Orgovyx is a pill you take just once a day. People frequently have fewer side effects with it than they do with Eligard.’
Radiation you have sounds about standard for what has happened.. Do not expect a cure. With the cancer that you have, you can go into remission for a long time, But a cure is pretty much out of the picture.
When I had my salvage radiation, I had 8+ weeks of it. They gave lower doses, which resulted in my having no side effects at all. You’re going to have higher doses, which can cause proctitis and a few other issues. You could ask the doctors for specifics. Some people have problems because of it hitting the rectum and end up with diarrhea or other similar issues, Having to go multiple times a day. This may not happen, but be prepared.
SBRT to the hip is no big deal. I had it done to my spine three years ago, Had a metastasis wrapped around my L4, But it was successful after three sessions. No side effects at all, And my PSA dropped to undetectable within a month.
Now some information on what ADT can do to you, Something, the doctors really don’t get into.
Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing
Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I run on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.
Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If you have that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.
Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. I would start sweating profusely from my head dripping down into my eyes, My chest would get wet and so with my under arms After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones and drugs that can do this, speak to your doctor If you have that problem and come back here and tell people about it and we can give you some information about that specifically.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily. After eight years on ADT, I wear an Embrlabs Wave two device, which really helps control the hot flashes and hot sweats at night.
According to a doctor that spoke to a recent webinar, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this. You need to be taking calcium and vitamin D every day, your doctor can confirm this.
I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times. Some people do gain weight. The average is about 5 pounds but Some gain more. Just something to be aware of you can control it.