Another member- it's a blur - post surgery radiation options due to positive margins, CKD

Will Doran said:

Fight Hard

Rooster02,

Sorry to hear of your diagnosis, and Sorry we have to "Welcome"   you to the brotherhood, but we are glad you are with us.  Ask whatever you want.

I had no sypmtoms when diagnosed.  That was 2 1/2 years ago. My PSA was at 69 and a Gleason of 7 when diagnosed.  Biopsy was done. I had da Vinci assisted Radical Prostatectomy in December of 2013. Seminal Vesicles removed, and lymph nodes in my groin were removed. I was a pT3b N1 Pathologic Stage. Close to your stage.  However I had one lymph node involved.  Then they said they were going to call me a Stage 4, because it was an agressive Stage 3.  At least you didn't have lymph nodes involvment. My margins were OK, and there was a little bit of cancer showed up in one seminal vesicle ( I think right side as well). And the one lymph node had a very small spot that hadn't shown up in my MRI's.  My Doctors and Oncologists said they were going to be very agressive with my treatments, which they were. So, I had ADT and Radiation right away.   After healing, I was put on Lupron, to weaken any remaining cancer cells, and a month or so later I was put on 8 weeks, 5 days a week, of Radiation.  Bone scans were done and I had no spread to the bones or anywhere else, at that time.  Two weeks post surgery my PSA had dropped to 26, and then by two months my PSA was at <0.010 where it remains at this time.  (PSA test two months ago)  I have been on Lupron for two full years.  I have been off the Lupron for two months at this point.  Side effects are still hanging on, and according to my doctors will hang on for at least 4 months and up to a full year.  I will have blood work done in two weeks then follow up check up to see if my PSA is still holding at <0.010.  If so, I will be able to remain off of any form of ADT, as long as my PSA stays at what is considered "un-detectable levels"  They had/have my Testosterone knocked down to 17.  I was told and read that the new figures are, they want your testosterone to be below 20 to control any cancer that might remain.  That number of 20 is way below the low number for women.  It's tough to be at that point, and scary as hell.  However as of now, they say they don't worry about where my testosterone level is as long as the PSA stays low.  My "T" levels seem to be coming up, by the way I feel.  I'll know that in two weeks from my blood work.  Just as some of the side effects (Joint and muscle aches and pain) were starting to subside from the Lupron, they did a bone scan and found that I needed treatment for Bone Density.  My Bone density was OK prior to all the radiation and Lupron.  I have actually gained bone density in all bones, except in my femurs which were under the radiation.  I have lost 12% density there. So, I was put on Prolia once every 6 months.  I have had one infusion. All the side effects of muscle and bone aches in my legs have come back from the Prolia.  So  Please be aware of this side effect with bone density.  Ask your doctors about this as you start radiation treatments.  I was actually put on Calciaum suppliments  as I started radiation treatments.  Then the Chemo Oncologist decided my blood calcium was too high, and had me stop the calcium suppliments.  Big Mistake.  That doctor is no longer with the hospital.  Turns out my Calcium levels were at the high number, but were normal.  My new Chemo Oncologist has me back on Calcium Suppliments, in addition to the Prolia. 

 Our cases are all different, so what I'm telling you is what I went through and am still going through.  Know that your situation will probably be similar but I'm sure very different from mine.  Your doctors will treat you as an individual situation and adjust as needed.  Make sure you research and study all the information you can about all the treatments and side effects.  Check out Mayo Clinic, John's Hopkins and such web sites.  I got lots of information from those kinds of sites as I was starting on this Journey.

This is a Hard Fight.  Fight Hard, do as much exercise as you can to keep youself in good shape.  I was back on a treadmill two days after my surgery, and two months later was allowed back on my spinner bike and back to my weight lifting, etc.  I'm still doing as much physical activity as I can, and it seems to be helping.  I did a bunch of Physical Therapy for the leg problems from the Chemo, which I continue to do at home, and am now working out at the gym two afternoons per week, under the watchful eyes of the trainers.  My doctors tell me that they are "puzzled' (in their words) by my progress, and how I haven't had as many of the side effects from the Surgery and the Hormone Treatmets as they are used to seeing.  They atribute some of this to my level of activity and exercise. 

So, there is hope for recovery if you really Fight this Beast. 

Best Wishes, and know that you are in my thoughts & prayers

Peace and God Bless

Will

 

Will

Thank you for your input; all your physical efforts to augment your treatments with physical maintenance are inputs hopefully resulting in the most positive outcome possible. I had not given too much thought to this until you created your thread; thank you. I walked 7 to 10 miles a day, pre-surgery, now I need to focus on more elevated physical burst; increasing heat rates through exercises like jump rope, etc. I am 6 feet at 191 pounds, I should drop down to 185 pounds. My wife and I have made a diet change over the last 14 months; average red meat once a week, various beans frequently, fish, chicken, turkey, greens, fruit and nuts. Sugar has been reduced to a very small amount and we are starting to reduce our salt consumption Once and a while we will have pork.

I will continue to research and be introduced to the post RP treatments from different resources, thanks for the site suggestions. My radiation treatments will likely be completed at a MD Anderson location. These folks seem to have a track record treating cases like mine. I seem to be healing from the RP surgery and hope to talk to the MD Anderson team in several weeks.

A partnered ADT program with the radiation seems likely in my mind. The pre-surgery body bone scan and MRI were both negative but, there are error factors in all testing. From other posts, the image technology and methods cause questions to abound. I need to do more research in this area. Your input on bone density is a point well taken.

I am so luck to have my best friend walking this path with me, having just 43 years together, I will fight as hard as I can to add as many years to this partnership as I can.

Thank you Will, I appreciate your story and the effort taken to create your post. Bad things happen to good people; sorry our introductions came under these circumstances.

Rooster02

Will Doran said:

I forgot Diet

rooster02

You mentioned about changes in your diet.  Yes, I forgot that.  My wife started looking at that part of this FIGHT, and we have made the exact changes in our diet as you mentioned.  When I want a "snack", it consists of raw vegetables.  My morning start is all whole grain Muesli that we order from "Bob's Red Mill". It has dates and raisins in it.  Plus flax seeds, almonds and walnuts, sunflower seeds, etc.  The German tradition for this is to eat it with Yogurt.  In the "old country" they actually soak it in the yogurt or milk over night.  I don't do that, I eat it with skim milk.  My wife makes whole grain bread from scratch. She puts coffee and cocoa in the bread. For lunch, I toast that twice (dark) and then have cream cheese with either raw onions, olives and walnuts, or jalapeno peppers on top, and an apple with peanut butter.  For supper, my salad is always raw spinich, tomatoes and mushrooms with my wife's home made ranch dressing. We have cut out consumption of red meat to about 1/3 of what we used to eat.  Lots of fish, poultry and as you mention pork every now and then. Many nights, no meat at all.  Desert at supper time?  Yogurt with some kind of fruit and granola on top.  We eat no sweets as far as candy, cakes, etc.  We get enough sugar in our reguar food.  Making these changes has made me feel much better.  Not to mention making my cholesterol levels come way down and stay down even though being on the Lupron can elevate cholesterol levels.

My wife of 46 years is and has been my best cheerleader and support.  That is very important.  Without her, I'd be a basket case.  Quality of life is very important.  Enjoying the simple things in life is the best.  Drives in the country, trees, flowers, wild life, etc, as far away from all the confusion that goes with life in these times we live in. 

Best wishes

Peace and God Bless

Will

 

At the same time I was scheduling appointments with my uroligist, I was scheduling appointments with my nephrologist. An initial urine test indicated a higher than normal protien content. I then completed a 24 hour urine collection, running labs for creatinine levels. The levels came back elevated above normal. Pre-prostatecotomy, I also had an ultrasound test of my kidneys in conjuntion a test to see how sucessful I was at clearing my bladder of urine. There was 20% remaining volume in the badder from the test. The test all indicated CKD even though my blood pressure was low and no diabetes. My cycle of evaluation with my nephrologist was put on the back burner for the radical prostratecotomy surgery.

Since my catherter was removed about a week ago, my urine stream has continued to get stronger. I have not experienced this stronge a stream in a year or so. As a result of the prostatecotomy, I feel like my bladder is now being emptied; the enlarged prostrate is no longer restricing flow. I might not know when the stream starts but, I can work on that. I will go back to my nephrologist in about two to three weeks for another discussion, hopefully this will be a positive side effect of the radical prostatecotomy.

I don't think kidney damage is reverable but damage progression can be stopped or slowed down. There is more I need to learn about this but, I do feel the root cause of my CKD may well have been related to the enlarged prostate.