I'm UK based, new to Health Unlocked and just starting to get to grips with the chats.
I was diagnosed August '23 with locally advanced PV. Spread has occurred to a seminal vesicle and, very slightly, to a pelvic lymph node (Oncologist called it 'subtle') Gleason of 4+5.
I immediately embarked on a 3 year programme of ADT and will have 39 radiotherapy sessions around March '24. I've been offered an additional course of 6 sessions of docetaxel in advance of the RT and I'm trying to decide whether or not to take this chemo option.
My gut instinct is to say no. I know chemo, broadly, is likely to lead to some reduction in the risk of relapse, though that hasn't been (or can be) quantified in any meaningful way specific to my diagnosis. Radical ADT and RT is still seen as gold standard treatment and I really don't want to put my body through the impact of a course of docetaxel. Future monitoring will keep an eye on signs of any subsequent rise in PSA and should that occur, I'd think again about treatment options and be prepared to have chemo then if deemed necessary.
I'd love to hear, from anyone who has been or is in a similar situation, about how you approached this decision. And, indeed, from anyone else who has views on the subject.
Thanks
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TsarskoMomche
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There are two schools of thought. One kill it, take no prisoners, side effects aren't cancer.
The other is do what you need to do, when you need to do it. Make sure QoL stays high enough that the patient wants to live.
My MO belongs to the second camp.
I want to enjoy my life so don't disagree with her on this. I was offered ADT, RT, and chemo.
I did 3 1/2 months of ADT and rejected early RT and chemo.
In the last five years two soft mets have grown. I finished SBRT earlier this month.
This becomes a very personal decision. No right or wrong. I choose things that may or may not optimize my living window. I choose things that give me a great QoL.
Thanks, PCaWarrior, for sharing your view on this. It's the hardest decision I've ever had to make. Made harder by the fact that, as you say, there's no right or wrong in this QoL/risk reduction trade off. Wishing you well in the management of your PC.
Hi, there are several studies out there addressing early use of chemo. In this one, if one is high risk: PSA > 20, GL=>8, or a positive node, the conclusion was four cycles of chemo paid off in extending BFS. To give you one data point, I turned it down, because I hyper-responded to ADT (Lupron/Zytiga), and was not metastatic, although I was high risk (PSA:33, t3bN1M0 +SV) (see bio).
Unless he lives in Scotland I'm not sure NHS will prescribe Abi in this context, despite the good evidence. But now it's generic if it's affordable the oncologist should discuss this option. My husband got abi instead of chemo because of covid in 2020. Effective so far 3 years on though SE of ADT pretty awful - but that's down to low T not Abi per se.
Thank you for those links, Tall_Allen. Really helpful information. As Proflac, below, writes, abiraterone isn't currently prescribed by the NHS in England and doesn't have NICE approval.
My understanding is that your oncologist can write a prescription for abiraterone because the Medicines and Healthcare Products Regulatory Agency (MHRA) has approved a UK licence for it. NICE in Scotland and Wales has approved coverage in the high-risk (non-metastatic) situation, although NICE England has not, so you may have to pay out-of-pocket for it. In some of the world, much cheaper generics are available. If generics are not yet available in England, perhaps you can get it from India or Canada.
UK based, my husband had chemo which he did not tolerate well which was protocol then to be eligible for abiraterone which gave him 6 yrs good QOL. Stopped as became toxic to his Liver Abiraterone every time. Look for a trial
My husband was diagnosed Aug 2017 with distant metastasis- Gleason 9. Details in my profile- he is doing well currently. He did ADT and chemo to start then abiraterone, prednisone and ADT ever since. So I know my husband had distant nets that yours does not. But just coming to say that chemo did not ruin his quality of life. He tolerated it quite well. Everyone is so different in their reaction to treatments.
I had a hot pelvic lymph node with no distant spread. Was also offered chemo before 37 sessions of RT and now on 3 years ADT plus apalutamide. I recovered from the chemo pretty quickly but it took me about 6 mths to start to recover from the fatigue associated with RT.
My onco said that they are increasingly finding that the earlier and harder you treat PC the better. Also he felt I was fit enough to tolerate the chemo treatment. So I didn’t overthink it and just took his advice. I went skiing 3 times during chemo and worked through most of it so while it was a slog, I still had a reasonable QoL. Sometimes I think people conflate chemo with zero QoL which is not the case at all.
Thanks for responding, OzzieJ. It's a bit of a lottery how each individual copes with chemo, although I'm sure good physical fitness and a positive mental attitude play an important role in reducing QoL impact . Good to hear you maintained reasonable QoL through it.
My cancer was more widespread than yours at dx and initially I was very reluctant to receive chemo treatment. But eventually I came around to thinking I’d better do all I can to treat this. So I took the kitchen sink approach and hit it hard early on. I’ve used that approach for the past 9+ years. And yes, chemo really sucks, but you just gotta embrace the suck and grind through it. You can click on my profile to see what I’ve done over the years.
Hi Ed. Thanks for responding. Useful to read about the approach you've adopted. This is quite a community I now find myself part of! So many stories and different approaches to treatment.
Some people tolerate chemo very well, some do not, and there doesn't seem to be a way to tell which from which ahead of time. I am very fortunate to be someone who tolerated it well, and got tremendous benefit. I'm not cured, but I'm still alive four and a half years later, and my QoL it pretty good.
Chemo is a very big hammer, not to be used casually, but still a useful tool.
Hi. Welcome to this site, you’re in the right place. Am also Uk based and was diagnosed 9 years ago.. T3b m0 n0 Dec 2014, G9 (4+5), with spread to seminal vesicles. Almost identical to you.
I was not offered chemo, started on Bicalutamide (150mg/day), needed Tamoxifen (20mg/wk) to mitigate breast pain (grandkids jumping!). Radiotherapy (37x) from June 2015. Further details on my profile.
This may no longer be SoC and so I am not advocating it, except to say that 9 years later I’m still around playing golf etc.. albeit now on Zytiga/prednisone + Zoladex + plus bone supplements. Chemo may be next up if scan compares show progression of mets; am working out to get ready.
You’ve got a good shot at getting on top of this. Stay positive. Good luck.
Thanks for responding and for your words of encouragement, Ian. It's sometimes a lonely place to be right now, so it's really helpful to hear about others' experiences. My diagnosis is indeed very similar to yours. Good to read about the approach you've taken and the outcomes to date.
My husband did early chemo. He did have external lymph node involvement, so was considered metastatic at diagnosis. No spots on organs or bones per early PSMA.
There is a synergy that can happen when treatments are combined, producing a better response than if treatments are done separately or sequentially.
His father died of prostate cancer so we were inclined to treat his cancer aggressively.
Beyond the chemo (docetaxel and carboplatin) he did extended field radiation, and abiraterone plus lupron for 30 months.
He tolerated chemo well. The doxetaxel chemo had very few side effects. The carboplatin had more side effects.
He is currently off medication, having bi-annual scans to monitor.
We believe that the aggressive multimodal treatment is what has given him the best shot at a durable remission.
"local" and "advanced" in the same sentence is very unusual for prostate cancer. Since it already spread outside the prostate, there is no way of knowing how far the tiniest tumors have spread. That's the benefit of chemotherapy - it can kill cancer cells anywhere in the body.
Personally, I found the side effects of chemo to be more tolerable than the side effects from ADT. If you are younger than 70 and in great shape otherwise, the chemo might not be as bad as you fear. In my case, chemo plus radiation of abdominal lymph nodes gave me 5+ years of freedom from ADT.
If it’s mainly the side effects of chemotherapy that is concerning for you then you should know a newer protocol which lessens side effects without substantially compromising effectiveness has been gaining ground toward becoming a new SOC:
”Updated taxane treatment protocol: 50 mg/m2 every 2 weeks for patients with mCRPC, instead of the traditional 75 mg/m2 every 3 weeks. He (Sator) cited the Phase 3 study done in Finland with 346 patients. The Finnish protocol resulted in statistically significant improvements both in TTTF (time to treatment failure) and Overall Survival. There were also fewer adverse events with the 2-week protocol, including less neutropenia (low white blood cells) and fewer infections.”pubmed.ncbi.nlm.nih.gov/232...
Thanks for the welcome, j-o-h-n. Spot on - if only there was only one way of doing things! But then life would be boring. Have to say this one feels like the hardest choice/decision I've ever had to make.
I did chemo and ADT after robotic prostatectomy. Studies hsow it advances overall life expectancy but I have to say that it still progressed and it wasn't chemo that slowed progression, based on stopping ADT for a scan.
Do you research and coem to your own conclusion. It is not terribly clear.
Thanks for your response and for sharing your experience, dmt. Guess we're all looking for definitive confirmation on the best course of treatment but that doesn't seem to exist. So many shades, possibilities, marginal advantages etc. Time for a decision!
I am t3b no mo dx 2014 finished rt/ht 2016 ,psa check every 6months psa now 0.04 my testosterone has never recovered and now I have severe osteoporosis, they won't give me any trt,
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