I’ve just started my journey fighting advanced PCa and am hoping for some advice from you guys who have lots of knowledge and experience.
After a PSA result of 13.0, I had an MRI of the pelvic area and was diagnosed with Stage 4 advanced PCa in May 2022. Gleason 8, LN involvement and a quite large (few inches) tumour on my right inferior pubic ramus. I had my first Prostap (= Lupron) injection two weeks ago and had my first consultation with the MO this week. He is planning to put me on Enzalutamide shortly and IMRT is a likely option further down the line when the ADT has shrunk the cancer. I am waiting for my appointment for a full body CT scan to see what the extent of the mets are.
Right now, I’m pain free and the only symptom I have is frequent toilet trips and slow/intermittant flow rate – especially bad overnight. Otherwise, my QOL is near normal. I’ve dramatically improved my diet (virtuality no alcohol, plant based, green tea, turmeric, D3, etc) and started regular weight training exercise.
My question is regarding whether/when to consider chemo? My initial thought was to let the ADT shrink the cancer, then IMRT to affected areas and think about chemo as an option after that. However, I’ve read that some recommend going in hard and early with chemo as it may give a better prognosis further down the line? Since my QOL is good at the moment, I’m reluctant to whack my body right now with chemo, but would it best in the long run to do so or better to keep as a later weapon?
I know everyone is unique but I would value your opinion on chemo treatment. Thanks
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Benkaymel
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I am not a huge fan of chemo, but it is possible you may have involvement outside the pelvis. Get the CT scan ASAP..I think docetaxel with your ADT plus enzalutamide is the way to go, especially if you have involvement outside the pelvis. You may wish to message dockam on APC as he has undergone chemo many times. There are caps, gloves, and stockings that you can buy and put ice in to decrease the hair loss and the chances of CIPN--chemo induced peripheral neuropathy ( nerve damage to your hands and feet). Choosing to eat healthy, and getting exercise is the right move. Ultimately, the chemo decision is up to you...Best of luck to you
I have my CT scan next Wednesday so will see what that shows but like you, I suspect I have involvement elsewhere. I really don't want to attack my body with chemo especially as it may not make a huge difference in the long run to my prognosis and will introduce a shed load of new health problems. but I appreciate your advice that it may be the way to go if the cancer is widespread. I'm trying to use as many natural food/supplement tools as I can find to fight the cancer in the hope that it avoids the need for chemo. Time will tell how successful that is.
The CT scan may give you the answer on how widespread is the PCa involvement. I have bone lytic lesions which do not show up well on bone CTs. If it looks like it is all in your pelvis, then you could get your IMRT and do ADT and watch your PSA. How you respond to ADT will be really a clue to your course. If your PSA goes to "undetectable" after a few months that is a positive sign that you are responding well to ADT and IMRT. Like I said, I am no fan of chemo because of some of the potential side effects. My final advice--Be the Driver and not a passenger-- READ--be proactive--get yourself to a center of excellence.This will help your prognosis.
Thanks again Don,I have been on an incredibly steep learning curve over the last couple of weeks since I joined this group and feel very fortunate to have the benefit of wisdom from you and many others. I am still researching whatever I can find and will certainly discuss all the options with my oncologist. Being an NHS patient in the UK, getting to a center of excellence could be a challenge, but I'll certainly see what's possible.
Excellent and very considered advice offered by the NP(fisherman), esp the part about making sure you are driving the bus, and not ending up in back, just going along for the ride. It can be a very dark tunnel we peer into when we start to consider treatment options, but being thorough in your research and even getting second opinions (when that can be done without postponing critical up-front treatment) will help steer your treatment course in a good-to-very-best direction.
As PCs is a very heterogeneous disease, there are outliers and good responders (like me) who lie somewhat outside (or at the very edges) of clinical practice and the results of trials that form the foundations of SOC. Read any studies used to suggest treatment pathway carefully to see if you can determine what, if any selection bias is present in the patient cohort that might put you at the edge or even outside the study's range. All that said, with apparent metastatic disease, it is important to get to some treatment plan ASAP and not give PCa a free run. The Prostap injection and Enzalutamide would do that, so you are immediately putting the brakes on the cancer. That is a very good first step and will buy you some time to consider treatment escalations.
I also wonder, if at some point (early on), a PSMA scan and genetic testing might give you a better definition of: 1. Cancer extent, and 2. Better understanding of genetic profile of the cancer morphology. Both of these pieces of information would allow for a more precise treatment program and establish two distinct baselines that you could use to monitor your treatment response and any actionable genetic evolution over time.
I'm not sure how the UK system works in getting PSMA scans or genetic testing done, but some things are worth doing outside the system when your life depends on it.
Good Luck what ever you decide to do. You have many unnamed and unknown friends in the PCa support community, so use them to their fullest advantage. As the saying goes, "The only dumb question is the one that never gets asked".
Ciao - K9 terror
PS - The QOL vs longevity issue is one most all metastatic cancer patients eventually have to address. At near-75 years old, I have chosen (at least for now) to make QOL my priority. In reading hundreds of 1st person accounts of treatment SEs and QOL impacts, it is obvious that some people deal with them better than others. It is a tough thing to resolve and only you can get that done. In my case I have adopted the attitude of another HU PCa patient who said ~ " I'm interested in adding Life to my Years rather than Years to my Life" - the assumption, of course, being that less years of high QOL is a better trade-off than more years with a badly compromised QOL. Definitely NOT something to take lightly or to think of as a one-size-fits-all concern.
So I found this info from the APCCC meeting 2022 (Thanks Marnie-I wasn't aware of them before your post). The APCCC is the Advanced Prostate Cancer Consensus Conference, which is a meeting of the leading clinicians in the world who vote on what should be the treatment direction for various stages of prostate cancer--see below:
What category are you in you might ask... Your cancer was found within 6 months of your primary tumor being found--synchronous. If indeed, you are low volume, then an AR drug with IMRT would seem like the way to go by consensus. If high volume, then adding docetaxel to your treatment seems appropriate . Print it off and take it to your next meeting with your MO--he will be impressed most likely....LOL..
When doing genetic testing there is germline (inherent DNA) and somatic (tumor cell DNA)testing and get both if you can. After all, information is power in making treatment decisions.
Dave, it's great you located the complete list of questions.
I'm certainly going to print it off...had only seen the Q's in the webinar and wasn't aware these were available...
I think the content would make a good reference document... maybe reorganised a bit differently.
Now that the full list are available... like I wrote originally...also think it would make a unique post or posts...maybe done in sections...you should put some thought into it now you're a man of leisure...it's not like you've got loads of other things to do now is it!! Enjoy your weekend. Well deserved. Marnie.
You are the best !!! Have your ears been burning??? The K9 Wonder and I have been talking about you quite a bit the last few days... I will take you up on your idea and post. Good idea... I do have loads of things to do !!! Hope all is well in Oz with you and Ron...
Thanks for this extremely useful link, Don. It will take me a while to go through it all and I need to find out if I'm low or high volume at least as indicated by my CT scan next week. I'll then focus on the relevant questions and vote results.
I will certainly ask my MO about genetic testing at my next app. I think that would be required anyway to see if I qualify for the clinical trial he suggested.
As my K9 Terror Amigo told you... You are in a fight, but you are not alone... Post your questions here and we will do our best to help... My last thought is on your R inferior pubic ramus tumor and I suggest Stereotactic Body RadioTherapy (SBRT). It is precise and can totally wipe out your tumor of several inches. It also has the proof of the abscopal effect --an immune response as a result of treatment which helps, as proven in the ORIOLE trial--see DISCUSSION AND CONCLUSIONS :
I do not know how many tumors you have, and your MO may argue that you are not oligometastatic (less than 3 to 5 tumors total), but the benefits of SBRT are proven and any help from your immune system in this fight is a good thing...
Just like me when I was a newbie, you are scared. How long will I live?? What do I do?? I spent many sleepless nights... Try to relax... If having trouble sleeping, I advise melatonin which may effect the circadian rhythm in a positive manner against prostate cancer. There are posts on Melatonin by pjoshea13 or Nalakrats on the other forum-just use search.
Keep us posted on how things are going.... good luck...
I sincerely hope to find out next week that I have low volume mets (oligo) and will certainly ask about SBRT.
Regarding sleeping at night, I do get to sleep OK but I'm unfortunate in that I have an enlarged prostate pushing up into the bladder as well as the cancer growing in/on it. So I have to get up to pee every 1 to 1.5 hours through the night (and the flow is very slow!). I was prescribed Tamsulosin but after a week had to stop it as it gave me constant heart arrhythmias and totally sapped my energy. I'm hoping that when the ADT+enzo starts to take effect (after a month or so?) it will reduce the pressure but my enlarged prostate might still be a problem. I'm wondering if I could take a 5-alpha reductase inhibitor like Finasteride or would it interfere with the PCa meds?
I think you can take finasteride or dutasteride without interfering with ADT/ AR meds, but check with your MO and ask a Pharmacist to run a drug interaction check against ALL of your meds. I am aware several guys take these meds with AR drugs, but always...safety first...
Last thought....you have to be proactive in getting the treatments you need....FIGHT !!! Fight the cancer, fight for the treatments... Drive the bus as the K9 says...
There are a lot of comments already so I'll be brief. 2 things. Somewhere I read that there is an advantage to starting in with chemo prior to 2nd generation hormone regimens, but I don't remember the reason. It may have been results from a longitudinal study somewhere. The 2nd thing to know is that the 1st line chemotherapy, Taxotere, is quite tolerable. I've heard that Xtandi is pretty rough.
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Where do I go for alternative to continuous ADT?
Metastatic prostate cancer due to have chemotherapy 