When Gail Puffer’s husband, John, was diagnosed at age 51 with prostate cancer in December, 2006, she had no idea how great an impact the disease would have on their everyday lives and relationship. A born fighter, she embraced all of the literature she could get her hands on so that she and John could understand what was happening to them and what their options might be.
Gail gathered information, organized lab work and office visit notes, and explored treatment options. “The doctors loved that I have done some research,” she said. “My familiarity with terms made us more conversant and better informed.”
Because of John’s high PSA and Gleason scores, they elected to have his prostate gland surgically removed using the daVinci robotic procedure. During surgery, lymph nodes were examined and appeared clear. More nodes were removed and frozen for further biopsy. John made a good – albeit uncomfortable – recovery from the surgery, returning home the following day and having his catheter removed in seven days.
Unfortunately, follow-up pathology reports indicated positive margins with cancer cells outside the prostate and a Gleason score of 3+4 with a tertiary of 5, causing John to enter a 38-treatment IMRT radiation regimen that sapped his strength for eight weeks. He also underwent androgen deprivation therapy (ADT) prior to radiation to weaken the cancer cells and reduce his chances of recurrence. Now 12 months out, John now has check-ups every six months.
For Gail and John, the shock of a cancer diagnosis and the resulting treatments were bad enough. But added to the personal post-surgical care and constant threat of recurrence come other realities of prostate cancer: incontinence, erectile dysfunction, genital shrinkage and loss of libido.
“No one prepared us for the changes in our intimacy and sexual lives,” said Gail. “This is a couple’s disease, and we had to learn on our own that my husband couldn’t achieve an erection for 12 months after surgery and then only with pills. When he had an orgasm, it was dry. We had no idea what to expect.”
Gail says prostate cancer took her relationship with John to a new place. “Guys have a really hard time talking about sex and intimacy. They feel like their manhood has been taken away and nobody prepares them for that. We needed (and still do) lots of counseling to keep the communication open. It’s easy to see how this disease can destroy a marriage.”
As co-moderator of PC_Women, a women-only Yahoo Group that provides a safe haven for women to acquire information and share support about intimacy and prostate cancer, Gail sees the harmful effect prostate cancer has on marriages and families. She wants to see a greater commitment by insurance providers to cover counseling, bladder control biofeedback training, ED medications, pumps and penile implants to help couples successfully address the effects of this disease. She believes that expanded insurance coverage can assure access to the tools needed to meet the challenges unique to this type of cancer.
“We also need to know more about what to expect when first diagnosed,” she said. “If added to the treatment team, trained professionals, such as social workers, nurses or therapists, can help us get over some of the hurdles.”
Gail and John have two grown sons. Gail believes she is fighting this battle for them. For their 35th birthdays, she is going to pay for their first PSA test.
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