In October 2010, FOF Linda Cohen’s husband of thirty years, Spencer, was diagnosed with prostate cancer, the most common non-skin cancer in America. That day, Linda joined the ranks of millions of FOFs across America who have been forced to navigate the rules of this relatively new epidemic. “Spencer was young, athletic and healthy. This was a shock,” Linda says.
Prostate cancer affects 1 in 6 American men. It rarely affects men under 40, which means most FOF women are likely to have a husband, brother, father or friend with the disease.
Linda coped by tapping into her network of FOFriends, many of whom had supported their own husbands or boyfriends though prostate cancer. At each step of her husband’s six-month long battle, Linda found solace in their stories and advice. Linda’s FOFriends steered her and Spencer to the “right” surgeon and helped calm Linda’s nerves in the waiting room while he underwent surgery. They also listened to her most intimate concerns: “I asked them, ‘Will we have a normal sex life again? Will he regain control of his bladder?’” Linda remembers.
“Once you start confiding, you realize how strong women are,” says Linda. “Men don’t always talk to other men about these things. We are really the ones who get the information. I bonded with so many women over this.”
Thankful for all the support she received from her FOFriends, Linda wants to make sure every FOF who is supporting a man through prostate cancer, is supported herself. Here she shares her story:
- Did your husband have any symptoms before his diagnosis?
- He noticed a little blood in his sperm. He had been told this could be normal and overall he was feeling well. My husband is a very healthy person — he’s an athlete and eats well. So, the diagnosis was a shock.
- Tell me about the diagnosis.
- My husband is 57. Every year, for the past five years he has been going for a PSA, a test for prostate cancer. It’s like the male version of a mammogram. It went from 2.75 to 3.2 to 3.75. Then last year it went up to 4.35, a cause for concern.
- Did the result of the PSA mean he had prostate cancer?
- Not necessarily. But, it meant he had to have a biopsy. From that, they come up with something called a Gleason score. It’s a number that grades the biopsy based on the appearance of the cancer tissue. He had a Gleason score of 7. A Gleason score of 6 means they might not operate. But, he had a Gleason score of 7 — broken down to a 3 and a 4. Basically, when you get that score, you have cancer and you have to do something.
- How was he feeling at the time of the diagnosis?
- He was shocked and depressed even though he tried to keep his spirits and sense of humor up. I think he was angry, like, ‘how could this happen to me?’ He was also scared the cancer may have spread, which thankfully wasn’t the case.
- What were his options for treatment?
- The options were either radiation therapies or surgical removal. Due to his youth and good health, for his case they suggested robotic surgery. It’s less-invasive with a faster, more complete recovery rate. There’s also a better chance that the cancer won’t return.
- What did you do?
- I contacted about five different women I knew whose husbands had prostate cancer. They shared what they went through. The same name kept coming up in my conversations–Dr. Samadi. Dr. Samadi has treated thousands of patients using robotics and goes all over the world to teach this treatment. We got three different opinions, but when we met with Dr. Samadi, we knew we were going with him.
- What are the risks of robotics?
- After removal of the prostate, you can’t produce sperm. There’s a risk of sexual dysfunction and urinary incontinence. The robotic surgery decreases the chance of incontinence and sexual dysfunction.
- How long after his diagnosis was the treatment?
- He was diagnosed in October and had surgery in January.
- How did you support him during this time?
- Before he went to the surgery he needed to do Kiegel exercises to control help strengthen his urinary sphincter. I would help by reminding him to do his exercises.
- Tell me about the surgery.
- Spencer took ten days off of work. He had just started a new job. The surgery lasts about three and a half hours and you can stay [in the hospital] one or two days. We stayed one day. They remove the prostate and lymph-nodes through fix or six quarter-sized holes incised in his abdomen. The waiting room where I stayed was like a hotel lobby. I was with about eight different women, and all their husbands were there going through the same thing. While he had the surgery, I bonded with them.
- What happened after the surgery?
- The surgery went well. The surgeon said that the cancer was more pronounced than the biopsy had showed but that they got it all. He will continue to have regular check ups to make sure his PSA remains at 0. You don’t immediately know if he will be incontinent or impotent.
- He had a catheter for about a week and after that he wore Depends. During the day, he would leak. It was embarrassing to him, especially when he went back to work. He tried to minimize the amount of liquids he drank. He continued doing Kiegels to regain urinary control.
- How did you support him through his recovery?
- I’d ask him, ‘Did you do your Kiegels?’ and I’d say, ‘You’re doing great.’ I’d take walks with him because he couldn’t exercise during that time. I would take out a chess board even though we haven’t played chess in years, to get his mind off things. I’d make him laugh when he was embarrassed about leaking by saying, “You’re really packed down there.” He made fun of himself by telling me not to make him laugh because he’d squirt.
- Did it help?
- Sometimes. I tried not to take things personally. When he said he wanted to be left alone, I left him alone — he really needed his space through the recovery.
- Did he ever regain control of his bladder?
- Yes. He’d talk to other men who said, ‘I had control within two months’ or ‘I was back to work within a week.’ Everyone heals differently. For him, it took 6 months. He lived in Depends during that time and it progressively got better.
- What about your sex life?
- After the prostate removal, you can’t produce sperm but you may be able to have an erection and orgasms. . They prescribed him Viagra six weeks after the surgery to assist with an erection and an orgasm. Fortunately after about four weeks he was able to have an erection. It’s been six months and now we have a normal sex life again both with and without medication.
- Did you pray?
- Yes, of course. I prayed every day, but I always felt he would be fine. He started practicing meditation and yoga with me. We spoke to our Rabbi about it. Spiritually, it brought us together — it made us more aware that life is short and helped us learn where we want to put our priorities at this point.
- What was the hardest part?
- To see your husband or someone you love hurting is difficult in any situation. Seeing a man wearing what he felt was a diaper — I just felt such compassion for him. There was shame associated with it, and I really had to make him feel important in other ways.
- How did you keep your own sanity through it all?
- I kept busy. I kept balanced. I was there when he needed me but I gave him space and continued my life.
Fashion merchandising consultant
FOF Linda Cohen is a fashion merchandising consultant from New York. Her husband, Spencer, was diagnosed with prostate cancer in 2010.