The fellow prostate cancer patients: What would you say has been the worst part of it?

BobsProstate

I'm just starting and I really don't know what to expect yet.

Whitey61

Surgery, Prostadectomy for me was eventful, 1.5 years of Chemotherapeutic drugs also differcult, the toll it takes on your mind living with this disease is hard and you learn to appreciate every single day you have...I'm 5 yrs out in clinical Remission with an unpresidented response to immunotheraphy checkpoint inhibitors Blockade.

c1a1c1

Complications from prostate removal, nicking of ureter and subsequent need to reimplant ureter into the bladder. Hospital infections, resulting in needing more meds that cause restless legs/feet and every medication seems to cause dizziness. Nearing the end of the available medications and expect to start chemo soon - never know what is coming next. Dealing with this since 2014. Always weak & tired in addition to the dizziness. The dizziness is the worst - afraid of falling.

Scoofer

Dear BobsProstate,

I’d like to answer your question from a point of hope since you are newly diagnosed as a relatively young man. I read your profile and see that you are Stage II. Do you still have your prostate and may I ask what’s your Gleason Score?

I was 54 years old when diagnosed with Stage IV prostate cancer. My biopsy had cancer in 12 of 12 cores, and pathology from my RALRP revealed a 5+4=9 Gleason score. My surgery was not nerve sparing and I did not take well to penile rehabilitation. I’ve tried to use various types of injections to be sexually intimate with my wife, but it’s not been very successful. I’m not a very squeamish type so I can easily handle most treatments others find distasteful. However, for me, the “worst” has been the loss of that type of spontaneous intimacy.

I’ve had Lupron ADT/Xgeva/hot flashes//night sweats/Medicine Related OsteoNecrosis of the Jaw/Xofigo/Zytiga and its all been manageable but not pretty. The battles I’ve had with interpersonal relations with my wife and kids has been the “worst” part, and even that has been a blessing.

I find that an attitude of gratitude goes a long way towards keeping one from depression, especially when so many of the side effects from the drugs used to treat us all contribute to depression.

Afterglow

Relative to the other three answers, I apparently had a pretty easy time. For me, the worst was when my primary care physician's office called and said my PSA was 23.7. It pretty much ruined my day. After that, of course, there was a lot of anxiety in understanding the disease and the possible treatment options. My ultimate treatment was androgen deprivation therapy and radiation, with the usual side effects of these, including hot flashes, some emotional changes (both temporary), bowel and bladder frequency and urgency which is now minimal (10 years out). Since no surgery I have not suffered many of the side effects described by the others. A major turning point for my wife and me was once the treatment plan had been determined. At that time we had controlled as much as we possibly could except to stick with the plan to give it the best chance of working. And don't forget, do your best to maintain a sense of humor. That and the support of your loved ones and friends can help you handle the rough spots much easier.

GregP_WN

I wanted to say thanks to you guys for answering Bob's question. I remember my first diagnosis and not knowing what was coming. I can still flashback to that time 32 years ago. That's what makes this site great, the support of each other and the sharing of experiences.