Rare combo: Robotic Prostatectomy with CRPS

I’ll keep my intro as short as possible as my issues are very ‘complex’. I was diagnosed with prostate cancer, (age 62), Gleason 6 in 2016, put on AS. (Biopsies 2016, 2017). Had DREs and PSA levels done every 6 months. PSA at diagnosis, 4.1. 3T MRI with contrast agent gadolinium, every 2 years. PSA started to consistently and slowly rise from 2022 till now. Leveled off around 5.4 - 5.9, until this past February 2024. PSA 8.5. Another biopsy ordered. 3/14/24. Results Gleason 7 (3+4). Decipher Biopsy Genomic Risk Group: Low. My urologist recommends RP, I agree. I am now 70. Radiation and hormones scare me more as I already have osteoporosis, and a yet undiagnosed GI issue. I have spoken to a very reputable surgeon associated with Lahey Clinic. I will need to talk to the anesthesiology department because…..here is the ‘complex’ part. I have CRPS - Complex Regional Pain Syndrome. (Please Google it, as it is a very complicated- the surgeon never heard of it). It is basically a neurological pain disorder. In my case it stared in my right foot after surgery there in 2012. (Although I suspect I’ve had it since the late 1980s). I am in constant pain 2-7 on scale of 10. It spread to my hip (frozen hip) in 2020 and to my shoulder (frozen shoulder) 10/23. (My third frozen shoulder). The hip improved 80% and my shoulder was healing, UNTIL my biopsy. The biopsy created a significant ‘flare-up’. I had an increase in pain in my feet, shoulder and hip about 10 days after the biopsy. Any kind of surgery can cause a a MAJOR flare-up or spread of the syndrome pain to anywhere in the body. There are measures that an anesthesiologist must take to reduce the chance of flare-ups and a wider spread, like using Ketamine as the primary or adjunct anesthesia AND or epidurals or spinals. Post surgery I won’t be able to use any leg pumps to prevent clots, as they would produce excruciating pain in my right foot and possibly my other foot. I can’t walk more than 3-4 minutes at a time. (Currently I live by sitting for 15 min and walking 3-4 min cycles ALL DAY LONG, that’s all my feet can take). I would like to chat with any man who has or had the same conditions I currently have. Double whammy, prostate surgery AND CRPS. Needless to say my anxiety levels are off the charts!!! That only makes the pain worse. Help!

Post Edited (PJ53) : 5/27/2024 10:55:20 AM (GMT-8)

Hi Mumbo,
Thanks for replying. As I mentioned in my post, I have osteoporosis and a side effect of radiation and Lupron is osteoporosis. My back is pretty bad -3.1 T score (it was -4.2, but supplements and weight training have helped a lot. Not the toxic drugs. (I am a retired pharmacist). Have spoken with others about side effects with radiation - bloody diarrhea which comes and goes, cystitis. It most likely will cause a spread so my CRPS, as rads would hit the nerves in the perineal area. NO THANK YOU, no guarantee of cure, STiLL may need surgery later when I’m older. NO THANK YOU. I witnessed what radiation does to older people, like my FIL, it destroyed his back and hip. I have issues in both places. I trust my urologist he is no longer a surgeon as he is 76 and soon to retire. So he is not pushing it as a surgeon. The surgeon I saw didn’t really push surgery but did add, the cancer is growing albeit slowly. Both men said I will most likely need surgery sooner or later. Better at age 70 than 75 or 80. It’s not etched in stone yet, as I have one more consult with my own urologist. I’ll discuss radiation with him.

Post Edited (PJ53) : 5/27/2024 11:52:39 AM (GMT-8)

Pj, welcome to the forum, and sorry for all you are going through.

I totally get where you are coming from. I had the same worries as you about radiation (not the complications, but the side effects). So I chose surgery. 3 years later I needed the radiation and HT anyway.

Suggestion: just speak to a highly knowledgeable Radiation Oncologist, and voice your concerns very strongly. It’s free, you’ve got nothing to lose, and from what you are saying, it sounds like the surgery in your case is going to be no picnic either, and also fraught with possible side effects or complications. Also regarding the hormone therapy that goes with the radiation you will probably need a very short course of HT considering your low intermediate Gleason score combined with a low risk Decipher score

When I needed HT, I talked to the doctors as well as the chief technician at a facility I was considering. I asked about the machines they used, and the software. They probably thought I was nuts, but I wanted to know that I had the best that modern technology could offer. Ultimately, I went to Sloan Kettering in New York.
Not going to say it was fun, but I am five years out with no side effects.

I totally understand your trepidation. But it seems like you’re caught between a rock and a hard place either way you’re gonna have issues for that I would speak to a Rad Onc

One more thought. Maybe speak to a medical oncologist. A third alternative might be to forgo both surgery and radiation and just do hormone therapy. The problem is that is it will not be a cure, but it could hold the beast at bay for a very long time. Or not. I understand you have the issue of osteoporosis but again it’s just a conversation and it will only cost you time.

Just my 2 cents. Best of luck whatever you decide, and do keep us posted

I have yet to hear what radiation does to patients with CRPS. I’m sure it’s not good. The other issue I have with radiation is going to the sessions. I’d have to go many days in a row for several weeks if I have to drive or even be a passenger even for a half hour it will make my frozen hip excessively more painful. At times I feel like I want to do nothing, let the damn cancer kill me naturally in 5 or 10 years. That is yet another option. Since I’m screwed no matter what I do!

When patients receive an LHRH agonist for the first time, they may experience a phenomenon called "testosterone flare." This temporary increase in testosterone level occurs because LHRH agonists briefly cause the pituitary gland to secrete extra luteinizing hormone before blocking its release. The flare may worsen clinical symptoms (such as bone pain, ureter or bladder outlet obstruction, and SPINAL CORD COMPRESSION. The increase in testosterone is usually countered by giving another type of hormone therapy, called antiandrogen therapy, along with the LHRH agonist for the first few weeks of treatment.
(From Cancer.gov)

Thanks JNF, I will consider.
I am located, Andover, MA. I need to be close to home as it is tough to travel thanks again, PJ

Post Edited (PJ53) : 5/28/2024 4:45:27 AM (GMT-8)

Thanks

You're in Andover, MA? There some great and near-great treatment centers in Boston. Surely someone there in the RO world has encountered your issues before.

Many of the Boston hospitals have satellite sites with excellent care. Lahey Clinic in Burlington has an excellent reputation and a urology satellite is in Derry, NH, 25 minutes from my home. Lahey-Burlington also has radiation oncology dept. The surgeon I did see was not ‘pushing’ surgery on me, he even said check out radiation options, but at the time the thought of it made me gringe. I mentioned ‘seeds’, he thought that was not a good choice for me, there are better options. I didn’t press him. Was going to do my own research. There is one thing guys here don’t realize, I have found zero information on its effect on CRPS. That I need to discuss with a radiation oncologist-urologic specialty.

PJ53 said...
… There is one thing guys here don’t realize, I have found zero information on its effect on CRPS. That I need to discuss with a radiation oncologist-urologic specialty.

I performed the requisite search as you suggested and agree there is little to no information relating CFPS to cancer treatment. It is not hard to understand when doctors do not appear to have any understanding of what causes CRPS or exactly what it is much less relating it to any specific cause or effect. It seems that things like bone pain from cancer metastasis can trigger CRPS so it would seem that treatment that keeps that from happening might be a good thing?

I can see where surgery might be able to trigger something as there is pain and discomfort after surgery and nerves are affected which could not help CRPS. There is evidence that surgery has been linked to CRPS events. Most beam radiation treatments have little immediate effect on anything and it takes a while for issues to develop if they do. Most issues do not include pain of any sort. Just some quick thoughts from a quick search routine.

I am in the process of consulting a Radation Oncologist who specializes in Prostate cancer. He is highly regarded in his field and is at Lahey Clinic, Burlington, MA. After I send my biopsy and Decipher test results to his department, I will have my consultation. (BTW my cancer is Clinical Stage T1c).

PJ, as Mumbo said, information is good, it is power. Dr. Google is only as good as the questions it gets asked. You'll hear the latest opinions. Let's hope the news is encouraging for you.