Just introducing myself at the prompt of this website...
I'm 62 now, and after having my prostate removed via Davinci, the nice folk who examine such stuff have pronounced that I am a stage 4a cancer patient. I apparently have lymph node mets, but none (yet) to bones or further in the body.
Currently I am in ADT (Lupron, Abiraterone+prednisone) and I believe that my team wants me to engage in Radiation at some point after I am able to control my bladder.
Sorry to be here - sorry there's anyone else to be here with. My drive right now is to bug every male relative that I have to be screened for prostate cancer, and to raise awareness as much as I can.
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chickgreen
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If only the lymph nodes in the pelvis are cancerous , the cancer is not metastatic and the treatment with ADT plus abiraterone for 2 years plus whole pelvis radiation may offer a very long progression free survival and overall survival ( around 80% a 9 years).
Eh - the MO classified it as 4a, and is recommending the radiation also - I'm 6 weeks out from RP, and the PSA has not dropped as much as I had hoped. They did indicate that it is believed to be metastatic, but I intend to have the survival discussions at my next visit - this would be about 75 days post RP.
To be considered metastatic ( M1) the cancer has to show up outside the pelvis in lymph nodes, bones or viscera by CT or bone scan. You need to recover from surgery and then have the pelvis radiation to the prostate fossa and the lymph nodes in the pelvis and if it is possible up to the main iliac arteries chains and even up to the aorta bifurcation. The radiation oncologists will know how aggresive they could be in your situation. The treatment should also have a systemic component of ADT plus abiraterone for 2 years to treat whatever may be outside the pelvis.
That is the course of treatment that I am pursuing - perhaps the doctors have seen something else in my report that I have not fully realized yet? I've been walking around like a zombie since October...
I do not want to over simplify, but if the only node(s) are relatively nearby the prostate, your docs still have some serious tricks up their sleeve. I know the stage is stage 4 and you probably saw some horrible stats about stage IV but really, you still have some mighty swings to take at your cancer.. Do those kegels. Exercise (walk walk walk). Join a gym and lift weights 3 times a week. Eat right. Think positive.
Working on all the above - Haven't been looking at the stats too much, as I do have other things to be concerned about. I know them docs have more up their sleeves to throw at me, but you've got me casting a little shade on what they've told me so far. Here's a snippet of the doctors notes from my last visit:
Yep it looks like they found a hot node when they did your surgery. That is the N1 part of the stage. Note however that there is no M1. So basically they want you to heal from the surgery. In the meantime they are blasting it with hormones to put it to sleep until such time they will attempt to eradicate it with radiation to all of the nodes in the pelvic area. Also 4+3 is not great (3+4 or 3+3 is better), but be thankful its not 4+4, 4+5, 5+4 o r 5+5.
I know I have a lot to be greatful for - I have read some of the stories of people who have had truly horrendous experiences. Especially relatively young men
Welcome chickgreen!
Its great they found that node, verses not finding it and wondering where. Obviously it would be better just being done, but you are still curable and it sounds like your docs are on top of things.
I resonate with your goal of increasing awareness. For the last several years every guy I know over the age of 40 I ask “Did you get a psa test recently?”
Good call having relatives checked. I have BRCA2 and all brothers and sisters, cousins, nieces and nephews have been tested for the genetic defect. Killed my dad in'15 and I was diagnosed in '16
How long did it take to have the genetic analysis done? I'm primarily interested on my son's behalf, but I've got a brother and nephews as well. It seems like mine is taking forever.
Welcome, IMHO you've found the font of APCa knowledge. Ask anything here and your sure to find opinions, first hand accounts and references to all things regarding this disease. Your fear and anxiety will subside as you learn more about your unique condition. Everyone's situation is different and we all learn from each other. You're going to be OK, you've got this and we're here to help you, cheers 😎 DD
I suggest asking your doctor(s) about getting a PSMA PET scan. I was diagnosed with stage 3b prostate cancer in 2015 and had a DaVinci prostatectomy. My margins were clear, but the cancer came back and I eventually got radiation treatment in 2017. I am 60 now, and so far appear to be cancer free, but I was told by my radiation oncologist back then, that if it came back there would be no cure. I would get hormone therapy that would eventually stop working and I'd last about 7 years. I no longer believe that's true, but anyway, back to your situation...
My dad's radiation oncologist told me that they now have PSMA PET scans that can detect metastasized tumors at a finer level and then zap them with radiation before going to lupron. So this may be too late for you, but I would still ask about it. It might be helpful before you get radiation.
I am curious to know where you are in the world (I am in the SF Bay Area) and what kind of medical plan you have (I have a private doctor, and I switched my dad to Kaiser...I have been impressed with Kaiser and am thinking that I would also like to switch)
I'm with Kaiser currently, in the Seattle area. I've been impressed both with the speed that they have worked, and the lack of barriers to treatment.
That being said, they are reluctant to schedule a PSMA-PET scan for me. I've been thinking of contacting the facility that does the scan and seeing what a cash price would be, or simply stomping my feet and saying "before radiation..."
Greetings chickgreen,DO NOT PANIC!!! We all have been there. Pca is slow growing so make sure you have a good "honest" Medical Oncologist....
Meanwhile, if you don't mind: (It's all VOLUNTARY).
Would you please be kind enough to tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?
ALL INFO IS VOLUNTARY, but it helps us help you and helps us too. When you respond, you might want to copy and paste it in your home page for your use and for other members’ reference.
Don't bother to..... just copy and paste your first post (see below). We are here to help not to be pains in the ass.
I'm 62 now, and after having my prostate removed via Davinci, the nice folk who examine such stuff have pronounced that I am a stage 4a cancer patient. I apparently have lymph node mets, but none (yet) to bones or further in the body.
Currently I am in ADT (Lupron, Abiraterone+prednisone) and I believe that my team wants me to engage in Radiation at some point after I am able to control my bladder.
Sorry to be here - sorry there's anyone else to be here with. My drive right now is to bug every male relative that I have to be screened for prostate cancer, and to raise awareness as much as I can.
Usually the Pca is slow growing but for me it took 2 months, PSA ( 3 μg/L = 6 2019/11/29 to 24.6 μg/L = 7 2020/01/29). Biopsies 2020/02/15 (12 of 12 positive).
Due to my age (73 y.o.) and TBF(Total Body Failure) NH Marginal Zone + kidney failure and COPD and Hearth Failure.no RP.
VMAT-RT 3 Gy X 20 Fx = 60 Gy + ADT i May 2020 originaly 18 moths but down to 6 months due to the responde PSA 24.6 μg/L down to 0.03 μg/L in 30 days.
It sounds like a good plan. Don't rush it. The Lupron+abiraterone will keep the cancer from progressing while your bladder recovers. Some recommend waiting at least 7 months for full healing because radiation will set the healing back.
Fortunately, with metastases only in your pelvic lymph nodes, you may still be curable (I hope so) with whole pelvic radiation and 2 years of hormone therapy.
There is a clinical trial that seems ideal for cases like yours:
You don't qualify because you have already had abiraterone, but I wanted to show it to you to increase your confidence that you are on the right track.
The other difference is that they require an Axumin PET scan, but they will accept a PSMA PET scan. The use of it is they can give a little extra radiation to the pelvic lymph nodes that show up, as well as if there are sites in the prostate bed.
1) No weight lifting more than 4-5 kg (8-10 pounds) for min 6 months after surgery. I followed this rule but got a hernia on the 8th month after relaxing measures.
Welcome chickgreen. May I call you CG? You are on the right track with your plan. It would be good to have the PSMA PET scan to better clarify where the cancer is. It will be reassuring if it confirms there is nothing seen outside the pelvis. Since that would possibly change the treatment planned, then it is worthwhile and medically indicated.
Hi Mateo - please call me Chick (an old family nickname). I've been getting pushback for my doctors about getting signed up for a psma PET scan. Since I have some time while I'm healing up from surgery before radiation is going to begin, I was going to check prices of the scams for cash, and work harder on my doctor about whether or not we think it's valuable
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