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Newbie introduction. Prostatectomy & diet and...

longrungo profile image
6 Replies

Hello fellow PCa colleagues, this is my first post...

I just downloaded the app, so I feel like I'm in more direct contact. I just turned 70. I had Gleason 9 scores (4+5) in three cores and an MRI confirmed extra-capsular invasion. I opted for a robotic-assisted prostatectomy at a world-class US hospital.

According to the surgeon, pathology done during the procedure revealed invasion of one seminal vesicle. I assume this persuaded him to cut wider. Upon completion of the procedure, the surgical team noted that the drain contained too much blood. They deliberated, and finally scrambled to cut me open to find the source of the uncontrolled bleeding. Large vertical incision through/around the umbilicus. After 90 minutes and a transfusion (one unit), they finally located the vein they had cut, and they sutured it. Bleeding stopped. Surgery pathology results showed no invasion of (11) lymph nodes and negative surgical margins. Very grateful for that. After they closed me up I spent two nights in a private room, with great nursing staff. I'm certainly glad that, after dozens of years of paying high monthly medical insurance premiums, now Medicare covered all costs. Went home with a catheter and 11 days later returned for catheter removal. Subsequent incontinence was severe. I am six months post surgery. The incontinence improved a moderate amount and has plateaued. It's still a BIG problem. So is total ED. My PSA upon diagnosis was 4.4 and it vacillated between 4.1 and 5.1 over several weeks. The surgeon says I am a prime candidate for recurrence and I'm tracking my PSA every two months. If it trends upward, then salvage radiation is probably next. Last PSA result was 0.0.5. Some would call that zero. But hoping to forestall recurrence, I'm converting from 9 years of a pescatarian regimen to a vegan way of life. It's taking time to adjust -- all the meal planning and lining up sources for a mostly-organic nutrition regimen. Not that easy here in Northern Europe. I'm also focusing on combining anti-prostate-cancer foods, such as broccoli sprouts (sprouting myself), freshly ground organic flax seeds every morning, cooked tomatoes, walnuts, raw red cabbage, organic green tea (not in tea bags, as they're already oxidized), cocoa, pomegranates, resveratrol, etc, etc. Last thing. I've been following Dr. Michael Greger, who has a great website, Nutritionfacts.org. My future is very uncertain. But, with a 5 year old son, I really want to survive - at least long enough to see him go to university. We'll see if that's possible. Long-winded, sorry, but that's a summary of my tale. :)

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davey1957 profile image
davey1957

Hello and welcome to the group!

Sounds like you had quite the time with your procedure. Do you live in Europe and just came to the states for your surgery? I totally relate to the fear of missing out on seeing your son grow up. That is the one thing that can send me into a panic! I have three kids and one grandchild. Two adult children and a 16 year old who is still at home. I love them so much and want to see how there lives unfold!

I’m no doctor but it sounds like you’re in good hands. I think your chances of seeing your son grow are pretty good. Anyway, wishing you the best as you progress in your recovery. And good on you for being so proactive with your diet, not sure I could do it!

Xo

Davey

longrungo profile image
longrungo in reply todavey1957

Thanks for your generous reply, Davey, and for sharing. Yes, the golden opportunity to nurture and give full love is central to everything. He's my only child, so it's crucial to me. I'm based in the US but my boy's in Europe, so I'm with him as much as possible. Non-desk-bound freelance income is in US but I can't work due to incontinence, and also frequent low energy. So, squeezing by.

The diet is a real challenge, a balancing act, a process that'll take months to perfect. Backsliding, was so weak the other day, likely due to low protein, that I had an omelette for breakfast. It helped. I have to learn to get that same amount of (complete) protein from plants. I'm working on it.

Warmest regards and best wishes!

pakb profile image
pakb

Sorry you are here- but it is a great group to be a part of. Almost all posts are really informative and supportive- no matter the route you decide to take in your treatment.

My husband was diagnosed Aug. 2017 at 49 years old. GL 9, 1st PSA 677 (was on bicalutimide for 2 weeks before he ever got a PSA done), small mets in spine and pelvic lymph. The day he was diagnosed we decided to go vegan. We also use conventional medicine- I don't think veganism or the supplements he takes will 'cure' him- but at least he has felt really good and we will do whatever we can to keep the rest of him as healthy as possible to get every fighting chance. It has also given him something he feels he can control about this disease. And he certainly doesn't feel like he isn't enjoying life by going vegan- he actually feels he enjoys life more now because he knows how precious it is. We do grow our own sprouts- broccoli, mustard, and radish. They are super easy to grow. We also grow our own microgreens and tomatoes. I use Dr. Gregor's info as one of my starting points to research everything myself- like to find scientific studies and see what they say about things before doing too much. You will also find lots of studies posted in this community that will help a lot in research on treatments, diet, and supplements. I'm not sure that anything works the same on any two people- so lots of trial.

It's also very important to exercise and keep spirits up- enjoy your days and surround yourself with a good support system for days you need it!

Looking forward to hearing about your good progress- take care.

longrungo profile image
longrungo in reply topakb

Thank you so much, pakb! I agree that becoming a vegan just feels right - ethically, environmentally, sensibly. It's a mission with a lot of research, refining concepts and discovering/creating recipies as time advances..

Many questions remain, of course. Simple examples: Soy or NO soy? Olive oil in small amounts or NO oils at all? I'm not sold on the coconut craze, so that's not a dilemma.

Among other things, what I find interesting in Greger's advice is that anti-cancer, antioxidant foods should be combined for greater effect. So, for example I'll make my own tomato/red pepper/onion soup from scratch - can be eaten hot or cold - and add curcumin, (black pepper, and a bit of olive oil to aid curcumin absorption) and if hot, into it I'll drop a handful of home-grown frozen broccoli sprouts.

nutritionfacts.org/video/bo...

I need to freeze many things because otherwise the meal planning and prep is so demanding that I spend my whole days sourcing/buying, cleaning and cooking. I just can't do that, I have too many other responsibilities. We'll see how this all plays out...

Very best wishes to you and your husband!

pakb profile image
pakb in reply tolongrungo

Yes- I have 3 teens in the house besides my husband so cooking can be a challenge. We chose no soy- our integrative MD that we see along with our oncologist team advised homemade miso soup with organic barley miso, hen of the woods mushrooms and lots of seaweed. Since we like it we eat it twice a day. He says soy is more a balance- stay away from processed soy just like processed anything- and don't make it your staple. We do use olive oil- also grapeseed oil, avocado oil...

My husband has done really well through treatments (physically and mentally) so we will take what we can get.

longrungo profile image
longrungo in reply topakb

Great advice! Thank you!

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