Coping with prostate cancer is an ongoing challenge that rarely ends when you complete your treatment.
I was reading a thread in a prostate cancer support forum that asked the following question:
Was your greatest battle with prostate cancer:
A. Before treatment. B. During treatment. C. After treatment.
Most of the men chose “C,” after treatment because they were living with a host of quality-of-life issues following their prostate cancer treatment. When I applied the question to my personal experiences as a prostate cancer survivor, there was no doubt that “C” was my answer.
I’m going to supply some abbreviations to make it easier to think about and share some of the quality-of-life issues men and couples face before, during, and after prostate cancer treatment.
- ED: Erectile dysfunction.
- UL: Urinary leakage.
- SE: Side effects of treatment.
- DT: Distressing thoughts or fears.
- MT: Marital tension or increased fighting.
- LM: Lost manhood.
- D or B: Divorce or breakup.
- BP: Bowel problems.
- LL: Lower libido; a drop or total loss of sexual desire.
- TS: Trouble sleeping.
- FP: Financial problems because of missed work or the cost of treatment.
I’m asking everyone who reads this to share when their biggest struggles occurred and to share a few of those struggles.
I’ll start. It was difficult and extremely stressful to receive the news that I had prostate cancer, but my biggest battles occurred after my treatment.
I suffered: ED, UL, DT, and MT. We went into counseling.
Also, LM. It took me years to realize my manhood had nothing to do with my erectile abilities.
LL: My desire dropped from a 10 to zero.
TS: There were times I needed prescription medication to help me sleep.
FP: My $6,000 deductible, times two. The first $6,000 went toward surgery. The second $6,000 went for penile implant surgery. Twelve-thousand dollars put a huge hole in my savings account and delayed my retirement plans.
When did your biggest challenges and struggles coping with cancer occur?
A. Before. B. During. C. After treatment.
Would you share a few of your struggles?
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I am not a PC patient but have followed thousands of men with PC over 3.5 decades in my capacity as a medical oncologist specializing in PC. There is no doubt that the issues you have cited are real. But in my experience most of these issues are related to:
1. The baseline status of the patient (e.g., what was sexual function prior to the PC treatment? Were baseline free and total testosterone levels checked prior to any therapy? Were other labs such as prolactin levels checked upon the diagnosis of PC?
2. The proper and rational selection of a particular treatment. I see many men who have a low risk of OCD (organ-confined disease) who are manipulated into a local treatment such as RP, RT, Cryo or HIFU when the initial focus should be on ruling out systemic disease and if confirmed getting that aspect of the PC under control first.
3. The selection of an “artist” for local control of the PC. My first experiences in the early 80’s with consultants such as urologists doing a RP (radical prostatectomy) were horrible with men having gross incontinence. That rapidly changed when I went “outside the box” of my local urologists and referred my patients to those who had negligible problems with incontinence post-RP. Once I did that I eliminated incontinence as an adverse side-effect.
4. The main issue I have seen with any form of treatment of PC relates to changes in sexuality, be they ↓ in libido as you mention as well as the neglected issue of alteration in the nature of orgasm. Retrograde ejaculation, dry ejaculation, diminished intensity of orgasm are the major issues that are side-stepped by most treating physicians. Some patients will have improvement in libido if their personal circumstances allow for various pharmacological agents (e.g., 5-PDE (5-phosphodiesterase) inhibitors, MUSE, yohimbine), mechanical devices (e.g., vacuum pumps, rings, penile implants), and/or other approaches.
I would offer that when the challenges with PC occur is not so much of an issue as being informed by physicians, other patients and support groups, self-education prior to the diagnosis of PC, at the diagnosis, prior to treatment and after treatment about all of the above issues. It boils down to almost everything in life: caveat emptor or buyer beware and this is not just about being on the alert as a consumer/buyer/customer/patient/client but about being smart about the key issues involved. You gotta do your homework.
Thought I would add this link to something that was just reported on today to ↓ problem of climacturia.
Andrianne Mini-Jupette Graft May Reduce Postprostatectomy Climacturia. Read about at: https://www.medscape.com/viewarticle/887941
I would definitely put myself in the C category.
ED: I’ve tried medications with no affect, pump & injections not overly successful.
UL: when under stress or crouching
DT: I get distressed when I read stories about small children fighting cancer or other people worse off than myself. I then feel guilty about my feelings of ED & UL because I am older and experienced so much good life they may never know.
MT: The ED causes this but my wife is very supportive.
TS: I often use prescription sleep aids to sleep and get away from the sexual desire which often haunts me.
I am definitely in the C category.
ED: Medication has not been nearly enough to help
UL: More like limited urinary continence
LM: Definitely
LL: Definitely
DO and AO: Diminished Orgasm intensity and Altered Orgasm as pointed out by Dr. Strum; often barely noticeable, when it is more intense it is very unpleasant and extreme urine sprays during orgasm
SE: Three months post treatment my pelvic floor is tender or hurts most of the time, an oxygen machine is required when I sleep to maintain blood oxygen, I often feel like I am having a hot flash that lasts for hours (I am not on hormones)
DT: And difficulty managing my emotions
FP: To some extent. Having two chronic illnesses also contributes to financial stress
My wife has been very supportive. She deserves sainthood for what she has been through and all of her help. Quality of life is much lower than I expected.