I had a Telehealth video meeting with a Radio Oncologist yesterday at the suggestion from my Oncologist. What I learnt from the RO, was that chemo is used primarily to kill the microscopic cancer cells which are moving around my body. This hopefully will prevent other tumours from forming in other organs and structures. Whereas Radiation treatment is used to kill the known cancer tumours. For me that's in my Prostrate, Bladder and Pelvis.
The realisation for me is that ADT and chemotherapy were never likely going to kill the existing tumours and that Radiation should have been discussed with me as a recommended part of my overall treatment plan. Probably a discussion on the Stampede trial would have been appropriate. Not as an option off handily thrown at me as, "you could try radio therapy if you like" by the Oncologist when the PSMA PET scan results revealed the Chemo and ADT had only shrunk the tumours by a little over half.
As has been discussed on this forum in other posts, we need to keep ourselves informed on our treatment options and engage with our specialists about those options. My APCa journey has only been going now for eight months and thanks to this forum, I have learnt a lot and this has benefited me greatly.
One thing for me is clear. My Oncologist thought the Chemo and ADT would be all I would need to beat this beast. And while it smashed my PSA, 50 at Dx in Dec 2019 now down to 0.05, it has not killed the existing tumours. Oncologists like drugs, Radio Oncologists like radiation and Urologists like surgery, it's up to us to bring them all together to manage our own health treatment plans. We are in effect our own Project Managers.
Keep up the fight, 😎DD.
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Doseydoe
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Thanks for this post, D.D. I'm just in the throes of trying to decide whether radiotherapy to the prostate only is a worthwhile addition to my current ADT + Erleada which got me down from 114 PSA to (so far) 0.2. I'm assuming I'll be below 0.1 by the end of August if all goes well.
I haven't ready access to the PSMA-PET scans, but assume I'd be in the same boat as you if I added chemo first. The radiation that the RO has in mind is the VMAT version of IMRT with 55 Gy given over 20 consecutive days at 2.5 Gy/day. In other words, a "mild" dose focused specifically on the prostate. I'm just afraid of creating unexpected side effects or making current ones worse since I get up to pee seven times a night and have urinary urgency during the day not to mention bowel urgency. I can handle those now but if they got worse it would affect quality of life regardless of any increase in overall survival. Plus radiation screw-ups aren't reversible like stopping a drug that's creating unexpected/unwanted side effects. Decisions, decisions!
Gday BF, I too am thinking of how I will react to the side FXs of the radiation. Its the unknown, which is somewhat of a leap of faith. But while the risks have been pointed out and as you rightly point out, when it's done its done.
For me, I don't see any other option as surgery is off the table. I have to try to kill this beast and improve my QOL. I have an ureteral stent in place which makes me pee blood all the time. The Radio Oncologist is confident this will kill the tumours and reckons I'll have a 50/50 chance of no longer needing to have the stent. Fingers crossed.
So, I'm gonna face the fear and get it done, cheers 😎 DD.
The RT can work and you’ll get the stents out . They told me the same 50/50 to survive my first years treatments of 8 wks imrt and double adt . I had bi-lateral neuphrostimy bags and a foley until finally only stents then presto change “ it worked”. I’ve been clear over four years now . I wish the same for you . Not one of us “ Wants “ radiation or chemo . But you want to live so you must proceed.. Heal yourself brother ..✌️😎
Get it done and get back to healing .. I’m pulling for your success and to rid the pain . It will be a blessed day when both the pain and the stent be gone .🙏🏼
Although it is a minority view among docs and patients alike, some see the need to totally destroy tumors as less important than finding ways to simply limit and control the progression of the cancer (and its symptoms). In other words, it's treated as a chronic disease.
Obviously, any treatment needs to address pain and other symptoms. You need to "beat" those. But it is not always so clear that "beating" the cancer itself is a better approach than finding ways to tame it. I would say in general that ROs are in the business of trying to beat it, and MOs are in the business of trying to tame it.
But isn't the message of that song to NOT try for absolute victory when the odds are stacked against you, and that a "fight to the death" is NOT always better than a compromise solution? I think the "beat it" there in the MJ song means to walk away from the macho battle whenever possible, since violence begets violence.
If I can convince my cancer to not grow too fast and not cause me any problems, I'm fine with letting it share my body. Plenty of room in there!
I was jesting with beat it! Brother! Please don’t feed into the odds or you’ll become one. Same thing with stats. The goal is to slow down the pc . Whatever it takes..Usually that is some form of poison. Save the host push the pc hard. Pc is not a nice opponent. No signs of the sucker is better than lingering Metz . As long as I have no signs of pc I’m fine. But when they arise it is a battle for survival , and no more. You are correct. Stage #4 pc will be with us to our end. Pc has already chopped my life in half . Right now I’m good. It will return if I live long enough. That in god’s able hands. I would rather share my body with testosterone than pc but since I no longer have that option then it’s about survival by any means. Take care Scott🌵
Doseydoe wrote: "PSMA PET scan results revealed the Chemo and ADT had only shrunk the tumours by a little over half." Even if you add radiation to ADT and Chemo, it will not cure you. However, if you add radiation now, the next PSMA PET may reveal, Chemo, ADT and RT have shrunk the tumors by 95%. Why should you omit that? I think if Doseydoe kills most of the remaining cells with radiation now, he will gain a much longer time taming the beast.
Oh, I'm not arguing against the use of radiation, by any means. I'm just suggesting that MOs do not think so much in terms of "cure" or wiping out the cancer, compared to ROs and surgeons.
(Frankly, I think it might be better if ROs and surgeons didn't talk so much about the limited potential of "getting it all" and talked more about the need for continued and evolving multi-prong approaches to treatment. The science has suggested many if not most men have some disseminated cancer outside of the prostate by the time the primary tumor is clinically significant!)
Ahhh Lucky you, and me with my daily soup sandwich on a waterproof roll....
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 08/08/2020 12:53 PM DST
Or is that: Medicate, Meditate and Appreciate? That's where I'm at now. D.D. obviously needs to deal with that stent and has more pressing reasons to radiate. I'm not there yet so I'm hesitant to open a Pandora's Box of unknowns.
Let us forget about God ...God and me are same....
Standard protocols.... ADT, RT, Chemo
All is OK
But Doc s are all screwed up as ignorant dummies...
Real game starts after these protocols....
I visit RO URO Onco....all smile and wait for PC to come back....
What a dumb mind set.....
A shocking way of treating patients......
So let us all forget about these robotized docs..
We have collection of Senescent cancer cells all having fun
They are all working and getting ready stronger....
What to do....
Very easy but shall I find a doc who has time ,to follow this road....and listen to me
NO he is too beaten up sitting in his office for last 20 years and giving 15 minutes with 30 patients a day....
NO He/she too scared and too much interested in money making of routine consulting....
The Next protocol is very simple....
Senolytic or senostatic therapy....
Nobody on this forum will pick this up except guys like Nala......
What is happening is a shame to ask medical guys......
There exist simple therapies...natural.....but no money
For example it seems Azithromycin for 5 days will wipe out these sleepy cancer cells
Many will laugh here but it is published by honest researchers who do not work for big pharma
I , myself, am no dumb doc beaten up by Protocols and 15 min consultancy...
I have Cancer and I have lot of time and I can research better that docs because they are outdated..old ,beaten and stuck with their 10,20 years old learning and they have no intellectual curiosity....Actually I am shocked regarding their know how
We have all the tools to cure cancer but all protocols are big pharma dominated....
Let us bypass docs and go directly to deal with cancer thru our own research....
I feel lucky after hearing some of these stories. Just started my cancer journey in June. I switched from my local urologist to Winship Cancer Institute at Emory (in Atlanta). My 1st appointment was on Thursday. I met with the Medical Oncologist. Winship operates on a team approach. The Medical Oncologist, Radio Oncologist, Urologist and Specialty Surgeon had already met, went over my case, and had several options laid out. They also have a nurse navigator assigned to expedite appointments between all doctors / appointments. Unfortunately, they say that surgery is not an option in my case. However, the very next morning after my appointment, I was set up with the Radio Oncologist as well as a geneticist to start attacking my cancer from multiple angles at once. The Medical Oncologist also said that there is a new trial opening up soon that I may qualify for, and she is researching from that angle.
I feel blessed that I have a local NCI designated facility that works with this team approach, and that I am involved with them so early in my fight! I also feel blessed that I found this forum so early in my fight! Otherwise I would have not known my options or cutting edge therapies, and I would have stuck with my local urologist until he had exhausted his options and passed me on to someone else.
You are right, this forum is a great resource. Sounds like you have an amazing group of specialists who are working together to find the best outcomes for you. My specialists while professionals, tend to work in isolation and simply make referrals. Getting them all together to discuss my prognosis would be like trying to herd cats 🐱🐱🐱. Sounds like your in good hands, keep positive Bear, 😎DD.
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