Wedding plans and cancer treatments —two things that generally don’t go together. In our case, however, planning for both went hand in hand.
Five months after my husband Rich proposed, he found out the prostate cancer he was treated for 9 years before we met — was back. That first diagnosis, when he was only 49, included treatment with radiation and seeds, but in the years since, there was now a plethora of treatment choices and we needed to muddle through all of them until we found the most appropriate one.
After copious research and subsequent visits to doctors from Johns Hopkins and NY Presbyterian to Memorial Sloan Kettering, Rich decided on cryosurgery— a week after our honeymoon. A year later, the cancer returned again and another cryosurgery was performed that October. The following summer, cancer showed itself once more and we again reviewed all the options. We interviewed even more oncologists and treatment alternatives. With three cancer bouts behind him, the treatment picture was hazy. We were understandably confused and worried in which direction to head but after much soul searching, Rich decided on salvage radical prostatectomy with Dr. James Eastham, Memorial Sloan Kettering. We placed our confidence in him because of both his excellence in the field, his work with Dr. Peter Scardino and most importantly, because of his expertise in such complicated prostate surgeries. Rich’s three prior procedures brought serious scar tissue complications which were something most doctors were hesitant and negative about. Dr. Eastham not only was qualified for the surgery but incited our confidence as well.
More than a year later, Rich is doing well and his PSA’s are non-detectible – for the first time. However, he carries significant, expected side effects from his surgery, notably total incontinence. But for now – the non-detectible status outweighs even that.
Today, as not-so-newlyweds but just as much in love, I’d like to share what I have learned on our honeymoon through cancer. First, not only does prostate cancer visit younger men — it can revisit often. And though we found a few places to go for information there was nowhere to share the ongoing crisis with other couples. We firmly believe that though prostate cancer happens to men only – it affects their partners in almost every way. It’s a ‘couples’ disease because both partners ‘live’ with prostate cancer – the fear, the treatments, the after affects and the specter of its return.
Very often, as in our case, the woman is the one behind the PSA screening, the treatment research, doctor appointments, note taking and record keeping. She is the one who not only shares in his recovery — but also the resultant side effects and the ongoing future concern.
Beginning our life as a married couple in a critical medical situation, we found no support groups that met our needs —so we started one, LifeLines Prostate Cancer Support Group. Lifelines is now in its third year and while we are small, we serve a distinct and welcome need. We hope to multiply the model in other areas but strive first and always to provide both partners on the prostate cancer journey with an informative yet intimate, caring community.
Early detection is critical. Rich bears witness that it does indeed happen at any age – and often more virulently in younger men. We would like to see a nationwide campaign toward PSA testing aimed at the younger generation, the accidental inheritors of the disease.
Rich can attest that even when you’ve had treatment for prostate cancer, you can’t be complacent about subsequent yearly testing. More attention must be paid not only to the urgency of initial testing but even after treatment has been completed, vigilance must be paid. As women, we not only make yearly mammogram and pap appointments for ourselves but insist our men have checkups as well. We need to have more effective messages that send men to yearly PSA screenings – despite the cavalier, distorted reports that have peppered the news of late to the contrary. Misleading notions and mistaken beliefs are prevalent enough in the non-medical population. To have them proffered by the medical community exacerbates the problem. Perhaps more stories from the real life prostate cancer victims might change blanket notions about PSA screenings based mostly in healthcare cost.
In our group, while we do not give medical advice – we give practical suggestions. One of those is to toward second, third even fourth opinions until the couple is satisfied they have both enough information and enough trust in both the treatment and the doctor. We encourage both partners to do the research, ask the questions and be thoroughly informed about not only existing treatments but also clinical trials and all options available.
Rich and I also believe that making websites and informational resources, as well as support group information, more readily available in urologist offices may be crucial to holistic, effective treatment of the prostate cancer patient – and his partner.
Insurance coverage not only for cancer treatment but also for attending testing, including biopsies and bone scans, is as critical as unbiased information of different treatment modalities.
Ultimately, as women, our only experience of a prostate is through our men — yet, what our men go through affects us as women. And women are not only wives but mothers and grandmothers. Prostate Cancer is not something we want passed on through our family tree.
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