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Need advice on treatment for Prostate Cancer

mja511 profile image
10 Replies

I'm 62 - live in Florida - have chronic lymphatic leukemia - now have prostate cancer - gleason 9 - psa 10. I still work full time -enjoy what I do - have a very active life. Bone scan and mri show that prostate cancer has not spread except in seminal vessicle. I'm looking at doing Cyberknife radiation treatment or robotic rp. Interested in knowing opinions of these two treatments or other suggestions. As always - grateful for this community.

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mja511
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Tall_Allen profile image
Tall_Allen

Did you find an SBRT RO who was willing to treat you? I ask because it is considered experimental in high risk patients. There are clinical trials for it.

The treatment with the best record of success in high risk patients is brachy boost therapy. This involves hormone therapy+external beam radiation+brachytherapy to the prostate. In Florida, I'd recommend John Sylvester in Bradenton (low dose rate brachytherapy) or Matthew Biagioli in Orlando (high dose rate brachytherapy). Brachy Boost therapy seems to be much more curative than surgery:

pcnrv.blogspot.com/2018/03/...

Sorry, I don't know how your CLL affects any of this.

mja511 profile image
mja511 in reply to Tall_Allen

Thanks Tall_Allen. I will check him out.

Vitruviusman profile image
Vitruviusman

I have leukemia too and the radiologist said those are absolutely not candidates for the radiation treatment

Penkman profile image
Penkman

Hi,

I was diagnosed with CLL in 2008 through a routine blood test so I don't know for definite how long I had it prior to then. I remained on watch and wait up until 2016 when it took off and I had to have FCR chemotherapy for it. In 2011, I was diagnosed with Prostate cancer which had spread to the seminal vesicle and was informed that because it had spread outside the prostate itself I could not be considered for a RP or brachiatherapy (I still do not fully understand this reasoning and wished I had asked more at the time)and as a result was given no choice but to have 37 treatments of external beam radiotherapy followed by three years of hormone treatment which reduces sex drive to almost nil. This worked fine for me up until two years ago when my PSA started to slowly rise to 0.25 following 6 years of it being too low to measure but has now stabilised on my last blood test. My consultant advises that I may have to go on hormone treatment again if it continues to subsequently rise.

The radiotherapy treatment I had has subsequently left me with radiation proctitis in the lower colon which causes bleeding from the back end to occur on occasions. This proctitis has been successfully treated twice now using an argon laser to seal the multiple areas of the colon affected by the proctitis.

Apart from not producing any semen, everything else in the male only department is working fine again after coming off the hormone treatment.

I live in the UK and so options in the US may be different and better advised since my diagnosis.

Unable to give you any definitive advice on which treatment to opt for unfortunately but I hope my experience can enable you to make a more reasoned decision and give you hope for the future.

I wish you well.

mja511 profile image
mja511 in reply to Penkman

Thanks Penkman.

dadzone43 profile image
dadzone43

I suggest you read Scholz's book The Key to Prostate Cancer. You will likelyl find you are in the "azure" stage. Your CLL is s confounder perhaps so you need to talk to a medical oncologist in addition to a radiation oncologist. Radical prostatectomy is probably not the route for you, but you need to look at all options.

mja511 profile image
mja511 in reply to dadzone43

Thanks dadzone43. I will.

Buzzjacket profile image
Buzzjacket

I have CLL and prostate cancer also. I was successfully treated for CLL on a clinical trial with ibrutinib and venetoclax. I am MRD negative (can’t detect cancer) since March 2018. In August 2019 I was treated with SBRT for prostate cancer. I was Gleason 4+3 and PSA of 10. The treatment was successful, no significant urinary problems except currently experience a minor prostate flare and using flomax. No ED issues. Dr. King at UCLA did the SBRT and I highly recommend. He knew about my CLL and did not express any concerns. Your situation may be different but I encourage you to see if SBRT is an option, perhaps on clinical trial for you. I’m hoping that, like me, CLL is not a factor in your prostate treatment decision.

mja511 profile image
mja511 in reply to Buzzjacket

Thanks Buzzjacket - Cyberknife is similar to SBRT. I like the part about no ED issues. I appreciate you taking the time to respond.

You might want to research HIFU. Don't know if it is effective for seminal vesicle involvement. You could talk to a HIFU surgeon.

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