Coming to terms with prostate cancer not easy

[Enki]

I am finding it extremely difficult to come to terms with the news that I have prostate cancer. I am nearly 64 and my PSA level was found to be at 6.6 in May 2018. After an MRI scan, and transperineal biopsy on 20 June, my urologist told me my Gleason score was 4+3, stage T2b, with intermediate risk as the cancer seems to be contained. But I am having a bone scan next week to help me decide on the treatment. I initially thought robot-assisted surgery (Da Vinci) would be the best solution but I am having second thoughts given the possible side effects of incontinence and erectile dysfunction. Looking into brachytherapy coupled with prior hormone therapy, and also Proton beam therapy if bone scan confirms cancer localised and not extracapsular. There is also the nanoknife or IRE option - available only in one private hospital in London (The Princess Grace Hospital). Could anyone please give me their views on those treatments. I am, obviously, very worried and scared, and living alone doesn't help. My three adult children are supportive but I don't want to be a burden. As my son told me once, shit happens in life.

[MichaelDD]

Enki..

I had DaVinci robotic surgery in June 2016. I had three choices . Probably comprable to what you are considering? I too am 64 years old diagnosed 2 years ago March 2016. Gleason 8. 4 + 4 margin and 12 PSA- Stage 3 when diagnosed. Your choice of brachytherapy (and others) should be considered. Me I needed to be as aggressive as possible. My history of cancer is more than just prostate. I had stage 2 breast cancer at age 50. Radical mastectomy and I hormonal therapy plus chemo then. I can tell you I am truly happy I took the DaVinci. Very painless 5.5 hour surgery. Also if you are going to do any surgery robotic or otherwise you start your Kegel exercises NOW. My other half is an OR-RN. So I have a double whammy from my doctor.nd her. My doctor was exceptional and I had no incontinence when my catheter was pulled 7 days after surgery. No runs no drips no errors. I also have had partial erection at about 50 to 60%. Straight to the point I can tell you that I can achieve dry orgasm by hand. Still see her and have arousal. With the help of a pill almost total hardness. My worry was not so much the sexual part but the life part. Just living. My PSA never stopped after surgery or radiation. Now 2 years later I am looking at chemo and hormonal therapy. So the sexual part will be slowing soon I'm sure!! I wish you the best on your journey and success on the choices you make. I am very happy with the way I started this hoping just to have a number of years more with my family! Hoping you the same.

[Enki in reply to MichaelDD]

Thank you MichaelDD for your candid reply. I am admit I am extremely confused and all over the place. With time, I hope, I will get used to the idea of having prostate cancer, and this will help me take the right decision.

[tkalaf]

Hi Enki,

The side-effects you mentioned with the Da Vinci approach, are also side-effects you can have with radiation treatment. Each individual case is different, so choose wisely.

Me, I am 63. I was diagnosed T2d from biopsy and scans (CT/Bone). My PSA was 9.1 and my Gleason was 9. I chose surgery over radiation for two reasons:

First - from biopsy I was diagnosed localized and non-metastatic, yet with aggressive and plentiful Pc. I wanted my contained Pc removed from my body. I felt at 63, surgery is easily handled better than if I was at much older age.

Second - if first option fails, what are my backup options? If you go RP and it fails (aka, positive margins), you can have radiation as a backup plan. It doesn't work the other way around. Surgery (typically) is not an available option after radiation.

My surgery was ~ 4 weeks ago. The surgery went good, with all margins negative. The pathology report from surgery upgraded my Pc to T3a (extra-capsular), whereas my biopsy had my Pc at T2d (contained). This is because biopsy specimens only represent ~1% of your prostate, so only an approximation can be made.

How am I doing after surgery, as well as can be expected. I suffer from incontinence, but not bad. I believe I'll eventually have it under control. My left-side nerves were spared along with ~1/3 of my right-side nerves. I was fortunate to find a urologist (surgeon) that specializes in Pc, vast experienced in Da Vinci, and nerve-sparing!

Lastly, I was fortunate to be offered a clinical trial involving intense ADT, prior to RP. My urologist knew of this trial through his connections with Pc research centers in the area. This treatment proved helpful, as indicated in the surgery pathology report. Pc cancer had taken up 0.7 volume, yet it was reduced to 0.07 or 10%. In other words, the ADT treatment eradicated 90% of the Pc prior to surgery!

With this prognosis, my oncologist says radiation is not needed. They will track my PSA with draws quarterly over the next couple years, then semi-annually. My hope is that with the ~3 months of clinical ADT, and RP with clean margins there will be no reoccurrence.

Enki - This site has been helpful for me. To hear what others have gone through, experienced, etc. helps to give you better understanding of this disease. I wish you the best in making your choices, and best of health going forward!

[Enki in reply to tkalaf]

Thanks a lot tkalaf. I am glad surgery went well for you. I don't know if ADT is available where I live. To be honest, I don't even know what it means and if it has any side effects. Could you please give me more details about ADT.

Regards

[tkalaf in reply to Enki]

Yes, ADT (Androgen Deprivation Therapy) is hormone therapy. It takes away the nourishments that Pc feeds on, namely Androgens in the body, the biggest of course being Testosterone. It is otherwise known as medical castration. As I understand it, standard care provides ADT primarally for those who are diagnosed metastatic. However, there are clinical trials in work that provide ADT for diagnosed non-metastatic patients. Here is the public link to the one I am a participant in:

clinicaltrials.gov/ct2/show...

As for side-effects, yes. This particular trial I am in prescribed an 'intense' mix of ADT. You can independently google the medicines listed for more information. For me, side-effects were high blood pressure from the abiraterone-acetate (which was concurrently treated), hot-flashes (which are tolerable), fatigue at times (easily dealt with) and 'emotional-liability' as someone has termed on this site. This last one will sneak up on you. It brings about an uncontrollable melt-down in emotions. Not for the depressed or weak at heart. Have a support system (family?) in place. Exercise helps to push through these 'bouts. Always keep in mind why you are taking ADT, will help you to push through.

I hope the above answers and gives you more insight to your questions.

Take care, and best of health!!

[Scruffybut1 in reply to Enki]

Just to add to emotional liability. My ADT hits me with this at different times but never, ever if I might be thinking of PCA. Superman3 is a bad one, speaking cheerfully to my wonder dog, seeing the drive for rescue in Thailand of those young footballers etc. During the past 5 years I have learned to embrace this ultra sensitivity and to enjoy it. It's part of me now not something I am cursed with. I now understand the emotions of my wife and children.

There is much to be learned from this devastating illness. Dxd Oct 2014 GL 9 all 12 biopsy cores cancer. Stage 4. PSA 167 rising to 200 in Jan2015. Now 0.03

Had 40+ bone tumours all gone after 8 months chemo. July 16 get NMwhole body scan and we know have multiple new tumours. Oh well, rugby season starts in August!

[Hidden]

Enki I agree the thing that makes it difficult to come to terms with PC are the potential the side effects of any of the available treatment options. They can have a major impact on our quality of life. It is wonderful that some folks have not had any. I hope you have a local support group available to you or friends that you can reach out to. I think it might help to talk to other men about their experiences. The online support networks including this one, healing well and cancer support network offer good support too. I have found that sharing my diagnosis with friends and family has helped as many folks have been through cancer and can offer advice. I believe you have a number of choices regarding treatment including surgery, radiation and perhaps active surveillance. I was told by a top robotic surgeon that I wasn't a good candidate. So I started ADT or hormone treatment prior to proton treatment in Sept. Interestingly ADT doesn't do much for low-grade PC but really helps with radiation for intermediate and advanced stages. I started Lupron 6 weeks ago. My T is as low as a 30-year-old woman and my PSA is down to 1.4. It is similar to change of life for women, but they survive it. If you do need it you'll be ok. I would suggest that you continue to work on staging your cancer. There really aren't any clinical studies comparing the long-term effects of treatment. But you can find some good information. I would bet your bone scan will come back negative. You may want a few other consultations radiation oncologists and urologists and maybe a medical oncologist. Also, a genetic test or two that might be useful to you and for your children. I had a second opinion from John Hopkins of pathology. I liked the new book by Mark Scholz-The Key to Prostate Cancer. It has some good Staging info. Here is a link to an interview with him about the book. urotoday.com/video-lectures... Sorry, you have to go through this. I have summarized my staging below for you. Good Luck!

PSA 1.4 6.18.18 Lupron 5.14.18

PSA 12.7 5.18.18

PSA 13.8 2.13.18

PSA 2.1 2.02.12

Adenocarcinoma of the prostate. Neurogenic bladder and recurrent bladder neck contracture with urinary retention. STAGING: Gleason 3+4=7 adenocarcinoma of the prostate involving 15% of the right apex and 15% of the right mid with additional Gleason 3+3=6 prostate cancer involving 5% of the left base with a PSA of 14 (but with adjustment for finasteride it was about 28). Pathology 3+4=7 has been reviewed at University of New Mexico 3+4=7, MD Anderson 4+3=7 and John Hopkins 3+4=7. A transrectal ultrasound of the prostate sized the gland at about 24 grams. A T3 MRI of the prostate shows a 1.8cm PIRADS 5 lesion in right PZ without gross ECE. A Prolaris test is consistent with intermediate risk and a PTEN test is negative for deletion

[Enki in reply to Hidden]

Thanks a lot for all the information and your kind words. It really helps.

[rf3rf3]

It sucks. It really does. After six second opinions on a Gleason 7(3+4),PSA 7ish cancer....my take is : surgery great cure option but horrible side effects early that you hope to get better. Radiation bad side effects that aren't as bad as surgery but could get worse if you are unlucky. Hifu is risky from cure perspective but good on side effects..but NOT paid for by insurance. All tough choices. I'm leaning towards HIFU....but there are no good or bad decisions. Just a decision that you have to live with.