This is the personal story of Sarah and Hans Hunter. Hans is a prostate cancer survivor, and although he and his wife Sarah are a very private couple by nature, Sarah offered to share their story. Learn how patient engagement, informed decision making, and caregiver support and understanding helped them navigate their journey through cancer together.
Facing a diagnosis…
When we talk about cancer, no two stories are alike. Whether you have breast, lung, colorectal, prostate or any other cancer, there will be many similarities in your experiences and yet within a particular cancer there will be many differences. That is because each of us is an individual and cancer comes to us in a very personal way. Each individual’s cancer differs enormously in its stage, type, cause, treatment, prognosis and emotional impact.
When my husband was first diagnosed in 2005 with prostate cancer we soon learned that the key for us was acquiring information so that we could make informed decisions. We knew we would not make fear based decisions but would take our time and evaluate the information in terms of our lives and preferences.
The first urologist we went to seemed too glib. The second urologist wanted to immediately assign a surgery date. “Whoa, my husband said, not so fast.” “Well” said the surgeon, “you’re old and we prefer to do surgery before you’re too old.” “Thank you,” said my 70 year old husband as we walked out.
We learned not to Google “Prostate Cancer” on the internet because in between the good sites there were too many that seemed very suspect. We went to trusted sites that had reliable links. We learned to seek second opinions not only about treatment choices but also for biopsy results as reading biopsy slides is as much an art as a science and labs that do too few of them might not be as attuned to the cell changes as labs that do thousands.
We studied the possible prostate cancer treatments and the side effects of prostate cancer treatment and finally decided the treatment and physician we would choose if and when we decided it was time to act. In the meantime we pursued what at that time was called “watchful waiting” but is now more accurately referred to as “active surveillance”. Whenever we saw a doctor, we wrote out our questions in advance and even recorded answers. Talking with your doctor can often be an emotional experience and we learned that our memory of what had been said might differ and sometimes what the nurse practitioner might advise was contrary to the physician’s. We eventually learned that whether or not you had sex or rode a bicycle the night before the PSA test could influence the outcome of the numbers. We carefully monitored PSA numbers with repeated blood tests and only when we saw the PSA rise in 2008 to numbers that indicated the cancer was growing did my husband (reluctantly) agree to treatment.
Handling side effects as a partnership…
We knew that incontinence could be a side effect of surgery and for my husband it surely was. As the months went by we realized that though the situation could improve, it was not going to disappear. (To attempt to minimize incontinence, it is important to do kegels prior to treatment and certainly after treatment as well.) We had to learn to live with incontinence and figure out ways to minimize its impact on our lives.
We have been together for almost 54 years and sexual intimacy is a very strong component of our marriage. We had to experiment, be creative and innovative, and to always be optimistic in the face of failures and we did indeed achieve success. We certainly learned that even with Erectile Dysfunction and incontinence, male and female orgasms are possible.
Finding support during and after treatment…
We came to understand that once treatment is concluded some people want to walk away from it and just go on with their lives and that is fine. On the other hand, after treatment, some men and women want to plunge in and work with others to help provide information and support. We are all individuals and there is no right way or wrong way.
Along the way we also learned that when confronted with cancer some want to hide it and not share their stories with family and friends or even with their spouses or partners. We believe that is not a wise personal decision as cancer is tough enough and going it alone only increases the difficulty. And cancer doesn’t happen to you alone. It has an enormous effect on your family, your work, your finances and your friends.
Some men would prefer to talk confidentially on a one to one basis with another man who has been on the journey. Some men might choose a support group as my husband did; a place where men and their partners can talk, share information and learn from one another. We also chose to volunteer with the Maine Coalition to Fight Prostate Cancer an all-volunteer, statewide, non-profit serving the men and women in Maine whose lives have been touched by prostate cancer and we currently serve on the Board. Intensely private people, we have learned to share our story and have agreed to post this on the blog. It represents only the barest outline of our experiences but we hope it might be useful to others.