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30 months stage 4 and still undetectable. Should I have prostate removed?

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Posted 5/26/2017 2:54 AM (GMT 0)
Hi All:

I am so relieved to report that 30 months into my stage 4 metastatic prostate cancer with an original DX psa of 209 and bone mets, I remain undetectable <0.02 at 30 months with ongoing HD treatment. Bone scan clean so I am so very grateful for my good luck so far.

I am just curious if it is worth me throwing the garbage can at it now with surgery to remove the gland and radiation. I know that this is not the mainstream path for guys like me but I wonder if it offers any benefit if I do get prostate gland removed while I am still doing so well.

Any feedback on this question is most welcomed...My Dr. is not convinced that this is an option for me but he is not totally against it either.
Posted 5/26/2017 3:41 AM (GMT 0)
I am probably among the least qualified here to reply, but I'll go ahead and be the first.

Your cancer was metastatic, so it is already out of the prostate, as you are well aware. In my limited knowledge, you would incur all the possible side effects from surgery, and make little or no gain in your battle to control your cancer. It makes no sense to me for you to have surgery.

Hopefully, others more steeped in stage IV treatment protocols will now add their expertise.
Posted 5/26/2017 6:26 AM (GMT 0)
geop:
I was in a quite similar situation to yours. Ultimately, my docs at MD Anderson had me go through an RP and IMRT after my psa went undetectable. I have now been on holiday from all treatment for over 3 years. Let me know if you have any specific questions. etc. Congratulations on your psa!
Simon
Posted 5/26/2017 7:16 AM (GMT 0)
geop - great result from HT, congrats. This study might be interesting for you.

"This large Swedish study suggests that men with prostate cancer that has spread beyond the prostate benefit from treating the prostate itself with radiation therapy or surgery rather than treating the disease with hormones alone."
www.europeanurology.com/article/S0302-2838(17)30282-8/fulltext
Posted 5/26/2017 9:21 AM (GMT 0)
It is controversial as there is conflicting information. On one hand the horse has left the barn. On the other hand the mother ship that started this is still there. Due to this conflict many insurance companies will not pay for the surgery or radiation. I recollect there is study underway to determine any advantage but it is not far enough along to help you.

I am on the side of radiating the prostate to reduce it as an ongoing source of the cancer and to reduce the overall tumor load. This won't be curative but may improve your long term remission.

I would not suggest surgery though. Removal is not better than radiation in eliminating the prostate as a source of the cancer. Surgery will present greater rtreatment risk and side effects. Brachytherapy and IMRT is the way I would go.

Next step is to get a doctor that agrees and will help you convince the insurance company.
Posted 5/26/2017 2:25 PM (GMT 0)
Hi Geop, seeing that you have been on Firmagon for quite a while, are you getting an injection every 28 days? Do you have any severe painful reaction to the injection?

Thanks,

MP
Posted 5/26/2017 6:33 PM (GMT 0)
I agree with JNF. Surgery seems a lot to go through for an uncertain benefit. All of the studies on this so far have been retrospective; i.e., a lot of selection bias going on, so it's really hard to say if the benefit is really there. You can perhaps find someone willing to do a brachy boost on you, or, if you can find someone who will do it with 5 SBRT treatments, that would seem to be minimally invasive and low in side effects. The other issue is getting insurance to cover the cost outside of a clinical trial.
Posted 5/27/2017 4:37 AM (GMT 0)
Thank you to all for this information. I will pursue radiation from this point on as I have nothing to lose and feel to be somewhat of an outlier having been able to maintain an undetectable psa after 2 years on 1st line hormone therapy after such a dreadful stage 4 dx in November of 2014.

To AKAI: The Firmagon injection is administered once every 28 days on the belly. Yes, it does hurt for a couple of days but not severely. Feels like a dull ache and a large area of the injection site remains hard and swollen for a week or so although not painful after a couple of days. Sometimes I get feverish the day of the injection, other times I feel normal. However, I have noticed that my belly is now full of scar tissue from the previous 30 Firmagon injections during the past 2 + years so finding an injection spot without scar tissue is becoming more of a challenge. I am also anal about having the same Nurse administer the injection every month because she takes her time to ensure that the solution is properly mixed and diluted and properly injected as per the drug manufacturer manual.

I hope this helps you and I again thank you all for your advise...More importantly, please stay we...
Posted 5/27/2017 2:58 PM (GMT 0)
Just as an "aside" , this thread reminds me of my meeting with Dr David Samadi, when, in my "infinite wisdom", 3 days after I was diagnosed, asked him if I should go on hormone therapy until I have surgery. Seems almost funny now to ask that with my diagnosis of what we thought was G6 at the time.

His response was very animated... "NO, NO, NO, DONT DO THAT!!! It will make your prostate all sticky and will make it very difficult to remove"
I guess that was part of his marketing approach.
Posted 5/28/2017 4:08 PM (GMT 0)

Pratoman said...
Just as an "aside" , this thread reminds me of my meeting with Dr David Samadi, when, in my "infinite wisdom", 3 days after I was diagnosed, asked him if I should go on hormone therapy until I have surgery. Seems almost funny now to ask that with my diagnosis of what we thought was G6 at the time.

His response was very animated... "NO, NO, NO, DONT DO THAT!!! It will make your prostate all sticky and will make it very difficult to remove"
I guess that was part of his marketing approach.

One of the comments in my surgical report that everything was sticky when surgery was performed.
Posted 5/28/2017 5:45 PM (GMT 0)
I'm very happy to read how well you are doing geop.

The experts have weighed in and the literature includes several articles that reveal better outcomes with treatment (RT/RP) to prostate. I'm not aware of any articles that report no benefit. Plus, you are very young.

We were undecided between RP and RT and consulted with Dr. Klotz, a very well known urologist. He said that because of the volume of cancer my husband had (large prostate, almost full of G9 PCa) that surgery would be better than RT. I'm just putting that out there in case you want to discuss or consider the volume of PCa in your prostate with your doctors.

I hope you won't have problems with your insurance- I'm pretty sure our public health system wouldn't allow men with mets to have RT/RP.

Wishing you all the best
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