After meeting Lorene in one of our monthly meetings and listening to her questions I knew she had really explored the internet in order to get informed. She was being her sweetheart’s advocate and I asked if she would mind writing a few paragraphs for the wives of the newly diagnosed. Some of her recommendations would be good to follow today. JEL.
I have struggled to contain our prostate cancer experience to a “few” words. It is impossible. This is a rather jumbled attempt to encapsulate a MUCH bigger experience than I have written about:
In early 2009, my then-sweetheart-now-husband was diagnosed with prostate cancer. I remember the day this journey started in February, and where I was standing when he told me. He had just walked into the house and I was standing in the hallway. I took one look at his face and in that single, crushing instant – knew something bad had happened. He told me that his doctor had reviewed his most recent PSA test and wanted him to get a biopsy. Two months later Wyman called home during lunch and told me that his urologist had come to see him at work to tell him that his biopsy was positive for prostate cancer and wanted to see both of us that afternoon. (Wyman is a nurse and his urologist works in the same building)
I was a little too stunned to be scared right then. I hung up the phone and immediately got onto the internet to do research on prostate cancer and although Wyman “graduated” from proton therapy treatment at MD Anderson on October 1, 2009, I still do constant research – I always will. If I were to describe the emotional roller coaster that we have both gone through from the moment his PSA test went awry on him, it might fill a slim book. You see, I don’t have a prostate. I don’t have brothers and my father didn’t suffer from prostate problems during his lifetime. My men friends talked about all manner of boring, fascinating or disgusting male interests – centering most of their discussions on sports, money and what they hated about their jobs. No one mentioned their prostates. I only knew about prostate cancer at the very edges of peripheral friendships; it always happened to someone’s grandpa or uncle or dad.
Now I am 55 years old and as statistically expected, every age-peer man I know is very familiar with the annual “finger wave” exam and its implications. But discussions about side-effects from surgery, hormone treatment and photon or proton radiation therapy are still intentionally vague, even from urologists. Remember when sex used to be a deliciously taboo topic? Now you can watch more infotainment on the topic than is bearable. However, the topics of incontinence, impotence and the ancillary emotional/financial/social effects of prostate cancer need to be dealt with more openly, like with the Proton Pals support groups at the Proton Therapy Center. Gentlemen, I am going to be perfectly blunt with you: sexual intercourse with an erect penis is not necessary for lovemaking. Honestly. Women may be way different, but when we love you, we do so unequivocally. Talk to us about it so that together we can make it work. Understand that even if we ladies are trying to be strong and supportive, this might scare the heck out of us at first too.
But that is just the tip of the urological iceberg. If there is anything Wyman and I have learned through this experience, its how much we didn’t know about prostate cancer, its side effects and the medical treatment options. As a woman who is so used to having her gynecological depths physically plumbed on a regular basis, I am a little dismayed by how prostate cancer is often cursorily discussed as a statistical occurrence; “if all men live long enough, they will have some sort of prostate problem, not limited to cancer”. Many men have difficulty enough with the idea of a physical invasion to their bodies through the back door. They might also find it difficult to communicate emotional issues – so being saddled with a prostate cancer diagnosis can make for rough going in uncharted waters. Don’t listen to any of the bunk when people – including medical professionals – shrug off prostate cancer as a minor occurrence. After all, it is happening to YOU so nothing could be more important.
Here is the thing; the people in cancer patients’ lives have to be supportive and caring and simultaneously somehow have to give short shrift to their own fears and just plow forward. If you need a female mentor for what fearlessness in the fairer sex should look like – go talk to Tai Ly, RN, ANP-C, at the Proton Therapy Center. She will tell you straight up what your options are and why you should not waste a single second worrying or being scared. She will also tell you that M.D. Anderson’s Proton Therapy Center will take care of the prostate cancer once you are accepted for treatment. She made our fears dissipate in the first 5 minutes of talking to her – pffft, just like that. It isn’t that you can be promised an absolute “cure”, but you will discover that you can’t make things any better by being negative but you can surely muck yourselves up unnecessarily.
If I could give my amateur advice to anyone going through prostate cancer diagnosis and treatment be they husband/wife/partner/friend/family – it would be to immediately ditch your fears at the doorstep and arm yourself with all of the research that you can find. Talk to more than one urologist, more than one radiation oncologist, a psychologist, social worker and all the friends or acquaintances you have who might have gone through this experience. READ UP ON THE SUBJECT and don’t take “No” for an answer. When you talk to those professionals, do NOT take a back seat and think that your have to nod politely and be accepting of whatever you are told. These are your lives and your dimes; doctors are not miracle workers nor is it their responsibility to do the research for you. They do have an obligation to answer all your questions fully to the best of their ability, but you must be aware that they cannot be specialists in all fields of medicine. If you don’t feel like you are getting enough information then immediately avail yourself of all the resources available. Good doctors will never discourage you from seeking more information. As far as proton therapy goes, you will not get nearly enough necessary information from the general urological community for whatever myriad reasons exist. Don’t waste time. However, be realistic about how much work you have to put into your own health care both before and after treatment.
Become your own best advocate and pffft, just like that – you will be graduating from treatment at the fantastic M.D. Anderson Proton Therapy Center and on your way to a better golf game…or the same dang one but ain’t life a blast anyhow?
Oh yes, if you need help – the Proton Pals is wonderful place to hang out.