A challenge for the couple
by Ben, 56 years old
When I was 56 and having my annual check up my family doctor mentioned that he felt a small lump on my prostate. He did not think it was anything serious, but should be followed up. First was a PSA blood test: the result was 2. He referred me to a urologist who also didn't think it was anything serious, nor did the specialist who did the prostate biopsy. I was not ready for the final report of a prostate cancer when the results came back. I felt that my world had changed and I was having difficulty taking everything in. I asked the urologist first to speak slowly so that I could write it all down and second to explain all those strange terms like Gleason score (mine was 6).
When I got home my wife Leah and I had long discussion about the decisions we had to make. Over the next couple of weeks we spent a lot of time finding out more about prostate cancer. Leah came with me to another appointment with the urologist and we tracked down articles that gave all the facts. During this time I went through a range of emotions. Initially there was shock and trying to get used to the idea. The idea of death was scary, but as I discovered more about the disease the side effects of treatments loomed larger. There was the possibility of incontinence and erectile dysfunction after the initial treatment, surgery: a radical prostatectomy, or radiation therapy. If the first line treatment failed then there was no cure, only treatment that would slow down the progression of the disease. This included hormonal treatment which not only causes erectile dysfunction but decreases libido and energy levels. How would any of these affect my relationship with Leah? And the rest of my life? Talking with Leah about our fears was what helped me the most when dealing with all these issues. In terms of my own beliefs I am an agnostic. I do not believe that occurrences like getting cancer have any particular meaning and there is no point in getting angry about fate. You have to give meaning to things that happen through the way you deal with them, and I tried to deal with it in the most constructive way possible. I think that also helped me.
We decided early on that the important issue was my survival. According to studies my chance of dying of the prostate cancer in the next 15 years was about 15%. After 15 years I would be 71. My father died at 80 and my mother was alive at 90, so that did not sound like very good odds. We agreed that opting for treatment rather than watchful waiting (i.e. doing nothing and seeing how it progressed) was the way to go and that if this meant side effects such as incontinence and erectile dysfunction we would deal with them. Surgery or radiation therapy (external beam or brachytherapy) - there did not seem to be good evidence on which was the best. Eventually we decided on surgery for a number of reasons: The urologist I was seeing has the reputation of being an excellent surgeon (and was also sensitive and supportive); Radiation therapy was a possibility if surgery did not remove all the cancer while surgery is more difficult to perform should radiation therapy fails.
After deciding on a radical prostatectomy there was an eight week wait for the actual surgery. Having made the decision provided a certain peace of mind and the wait added a certain poignancy to life. Leah and I tried to take full advantage of this time. Some friends were sympathetic and helpful - others could not deal with the fact that I had cancer. I had my own projects during this time - trying to get as fit as possible to help recovery after surgery -doing Kegel exercises to decrease any incontinence, and reading more, now focusing on the side effects of surgery and how to deal with them.
Surgery was, I think, worse for Leah than for me - I was unconscious at the time, but she had to wait. Postoperative pain was never a problem - the medication they were administering through my spine to relieve the pain for the first two days dealt with that, and I still have the untouched bottle of pain killers at home. I was walking about slowly within 24 hours and stayed in hospital only 3 days. For the first two weeks I had a urinary catheter, which was not pleasant but just had to be endured. Looking after it was no problem, but small blood clots tended to block the flow down the catheter temporarily giving an uncomfortable feeling of a full bladder with nothing I could do about it - usually gravity restored the flow when I stood up after lying down for a while.
The first trip back to see the surgeon was two weeks later. He told us about the pathology report on what he had taken out. It confirmed a Gleason score of 6 (intermediate), but the important fact was that the margins of resection were clear - there was no sign that the cancer had spread. Then he took out the urinary catheter. I remember walking down the hospital corridor afterwards with urine leaking out. I found it distressing that there was nothing I could do about it. From a very young age we are taught not to pee in our pants, and it was distressing doing so. The mechanical side of this was easy - protection such as pads worked well. Over the next few months the problem gradually got better. First I was able to sleep without leaks - no effect of gravity when you are lying down - and then there were few leaks when I was standing. What seemed to help me the most was starting jogging again after six weeks. I do not know why but after each jog the leaking seemed to be a little better. More important, by this time I had got used to leaking and it did not really worry me any more. After about 4 months I stopped using pads. It took somewhat longer to stop worrying about leaking but that feeling slowly dissipated. It was a nice feeling to have overcome one of the side effects of surgery.
Erectile dysfunction was a larger problem than incontinence. We did not want to give up our sex life and started to explore this area of our lives again about six weeks after the operation. Sexual excitement produced only a minimal increase in the size of my penis. However, we found out for ourselves the truth of what we had read, that you do not have to have an erection to have an orgasm. As far as I am concerned an orgasm without an erection is not as good as one with an erection, but it is a lot better than not having one! Over weeks and months my sexual response improved very slowly and gradually, but was still far from a full erection. The surgeon had suggested that I try Viagra at regular intervals. It always increased the response somewhat. We had read small studies that suggested that full erections are more likely to occur eventually in those who use another drug therapy administered by injection. These injections administered into the penis bypass the nerves, unlike Viagra, and have a very high chance of causing an erection. We attended a clinic to try out and learn how to do the injections. The first one was given in the clinic by a very skilled and sympathetic nurse. The resulting erection felt only uncomfortable. With a few more sessions at the clinic and dose adjustments I learned to do the injection myself, and the feeling of discomfort grew less. We tried it at home and enjoyed the experience. It was obviously nice to have the option of intercourse added to our sex lives.
However, there were also a number of negatives to using the injections. First, I do not like any type of needle, and other things being equal I would prefer not to use them. I learned to do the injection myself, but I could never actually look while doing it – I just lined it up carefully and then looked away. Second, how long the erection lasts is dependent on the dosage of medication rather than sexual activity or achieving an orgasm. Over time a smaller dose seemed to be more effective, but it was not always possible to predict accurately how long the erection would last. Losing it too early or having it last too long after orgasm were inconveniences, but worth it. We used injections only when it would not matter if the erection lasted for a couple of hours (which happened on a couple of occasions. Third, the solution needs refrigeration which makes it difficult to take on holiday (and I would not want to cross national borders with a collection of needles anyway). In spite of these disadvantages we used the injections for many months, also trying Viagra every now and then. However, we had to stop using the injections for a while early on when I developed Peyronie's Disease – a bend in the penis when erect which was caused by some type of trauma. Presumably lack of use had made my erection more fragile and we had been over-enthusiastic in using it. I was prescribed a drug to treat the condition, and a number of weeks later when we tried the injections again the bend was gone.
After about 8 months we managed to have intercourse using only Viagra, although my erection was far from what it had been before the surgery. However, the improvements continued slowly and steadily. When it was time to renew a prescription of the injection solution about 18 months after the operation we decided to try using just Viagra for a while. This was a bit premature, but soon, with the slow improvements, any advantages of the injection therapy over Viagra was more than offset by the disadvantages. Now, just over two years after the operation, we are only using Viagra. My erections are still not quite what they were before the surgery (the operation tends to diminish size), and the firmness tends to fluctuate, but at their best they are as firm as before. We are certainly enjoying our sex life, and take advantage of, and are thankful for, what we have been given by fate (and a good surgeon).
What has helped us most in our sex life over the past two years is a lot of talking both about physical changes and emotions. In terms of the physical aspects of sex, we had to adapt to constant changes in what worked best. The only way we were able to know what worked best for each of us at any time was to try different approaches, to talk about it, and not to make assumptions. We also found it important to tell each other what we were feeling about all the changes. For example, at one point Leah did not want to hurt my feelings by telling me that intercourse was not the same with a diminished erection. I knew this must be so, and it helped us both when we talked about it.
One of the most important parts of my story is that my PSA is still undetectable two years after the surgery. I know there is the possibility that a cancer cell or two escaped the operation and are dividing and growing. My PSA could turn positive any time in the next decade, but the chances are low (probably less than 10%). I have a PSA done every six months and I am no longer very anxious before getting the result. I do what I can to slow the growth of any cancer cells that still might be there. I eat soy products, and I take supplements of vitamin E and D, selenium and lycopene. However, once the diagnosis of prostate cancer has been made there is no definite proof that they will make a difference. However, there are no disadvantages to taking them. By this time I almost certainly have a greater chance of dying of a heart attack than of prostate cancer, so I am more concerned about diet and exercise in relation to my heart. I find that I sometimes have episodes of anxiety that I did not have before my diagnosis. They always seem to be about possibilities with low chances of occurring (just like the cancer reappearing); for example, I spent one plane trip worried about the plane crashing, something that never occurred to me before. These episodes of anxiety are not an important part of my life, and are slowly diminishing. In some ways Leah and I have been able to use the experience of my cancer positively. Some of the sexual changes have only duplicated what may occur gradually with increasing age. Having to deal with them has made us realize that we can deal with important physical changes and still have enjoyable sexual experiences. This is a nice realization as sex is an important part of our life together. Experiencing cancer has also helped us to appreciate all the good things about life, and to take advantage of our current good health. Being confronted directly by sickness and death and then escaping from them, even if only temporarily, is an important reminder to live life to the fullest.
This story has been very much about Leah and me, because prostate cancer affects both members of a couple. We have a son, who no longer lives at home and a teenage daughter. We always told them the truth about my condition, and they always focused on the large chance of a complete cure, rather than the small chance of recurrence and progression. Of course initially they were worried and scared, but this quickly faded after the operation with the good news from the pathology report and the first undetectable PSA. About 18 months after the operation we spoke to a cancer support group about our experiences. On hearing that we were going to do this, our daughter said, "But you are not a good couple to talk about your experiences as the cancer did not affect you very much." Although what we have gone through in the past two years was an intense experience, there was also some truth in what our daughter said looking at the long term. While it was an important challenge we emerged from it in good health with all aspects of our relationship flourishing. We are grateful to all the excellent health care professionals who have helped us along the way. However, most of all we are grateful that we both wanted to use our experiences to strengthen our relationship.
To read, Ben's wife Leha testimony, click here.