Not sure how to react

Was talking about that this morning with my boyfriend. He had surgery 12/12. He's doing fine from a cancer perspective, but other areas are taking their time... but getting better. We talked about how when you talk to people about having PCa, they generally don't react as they would with other cancers because, I guess, of the high cure rate if caught early. Most people think that is the end of it, but life is permanently altered, and unless you are the one going through it... sometimes that can be forgotten.

My brother in law has stage 4 pancreatic cancer, and is down to 134 pounds. Gaunt, on chemo, anyone would perceive that as "cancer".

PCa, until very late stages, doesn't look like that. My friends comment on how good I look (well, given what we have to start with anyway). The side effects from our treatments aren't very visible. The fact that sex is typically a huge part if the male mind scape doesn't mean a lot to women, in fact they joke and mock it.

A disease whose treatments attack the very foundation of "maleness", in a rather invisible manner to all but yourself (mainly), and you spouse, is both horrendous and unspeakable. Nobody even knows what the prostate does, and if you dare to explain it all you'll get is, "Eww..." and a quick change of subject.

The only aspect I share of my ongoing hormone therapy is fatigue and hot flashes. This are far from the only ones, but they're all I can mention. Lost interest in sex? Can't climax anymore? Pretty awful, but we sure don't talk about it.

Is it real? Heck yes. Mine would kill me without treatment, and still may even with treatment. Let that be on someone's mind and see if it feels real. Just don't expect validation from those who've not experienced that existential threat. In fact, they'd prefer if it is not "real". Recognizing that reality causes people to at least briefly consider their own mortality, and no one enjoys that.

It may be hard to find, but look for a copy of "A Private Battle" by Cornelius and Kathryn Ryan (he wrote "The Longest Day", speaking of Memorial Day coming up). Leave it on the counter.

Ryan died fairly miserably and brutally of advanced PCa in the days before PSA and the (comparatively wonderful) testing we have today.

It is a blend (by his wife) of their journals in the last couple of years. She kept one, but didn't know about his. After he passed, she intertwined the two.

Nothing much to say but that it should be required reading.

I went to the local ACS Relay for Life, and walked with a girl whose family took me into their circle about three years ago. She looks like everyone expects a cancer survivor to look. People would take me for the caregiver until they realized we both had the survivor shirts.

In reality, based on where the two of us are, with physical damage and prognosis, she is in much better shape than I am.

I'll second the comments above. Correct, we have our issues, but we tend to hid them. What girl on a date finds it good to learn that there ain't no happy ending from this one, no matter how much the dinner cost?

Being single on Lupron and after surgery (non-nerve sparing) and RT just does not equate to my 300+ days a year of international travel before PCa. I can't get to the airport without having to make a head call.

Oh, but wait!! I've got the GOOD cancer.

It is kind of an invisible disease, except for those of that have it! My story is that the absolute sickest I looked was immediately after the biopsy, Not the RPR, not the Radiation. My wife says I turned a very interesting shade of green. For me it has been nearly asymptomatic. But in the back of my mind, as each PSA test approaches, I know I have cancer. I guess the good news is that until (hopefully not for many years) this disease takes me, I am fighting on, regardless of how sick I may look.

All I can say is "AMEN"
Bob pt3b gl9

Many cancers, including PC, are "invisible" to the outside of the body, so I find your wife's remark odd, and if it were me, a bit disturbing. Since my wife is a nurse, and is around those with cancer all the time, she's never made remarks like that in any of my 4 major cancer events.

I have never seen my PC, it's described in medical reports/summaries, and of course, I know its there because of PSA reports, but even those are just numbers on a piece of paper.

However, I know its' running wild somewhere inside of my body right now in the form of micro-mets, and its no longer curable. It's very real to my wife and I.

Perhaps, its her way of "dealing" with it, or some form of being in denial (not trying to judge or label your wife). But I do empathize why it irks you to hear her say that. Hope you can forgive her and resolve it.

I got 40 years in my marriage, and if that is the worse, then you are doing great, despite your present feelings about this.

David

well said, ms. worry.

My husband was given the dx of stage 4 April 1, 2014. The mets are all up and down his spine, hips, legs, pelvis, and skull. I can not tell you how many people have said, "Oh, it's prostate cancer, very slow growing, he'll be fine". I was really clueless about prostate cancer before this, but I will tell you one thing, I will never be so thoughtless to make a comment to someone about the seriousness or lack of seriousness of their health. I would love for him to be "fine", but nothing about this "fine". We are going to fight with all we have, but our world was turned upside down by this diagnosis, and my heart split right in two. I am certainly not "fine".

Dmlvt, Congrats on such a long marriage. I am sure a good conversation about how hurt you are by your wives comments, would go a long way. I am sure she loves you very much. I almost have the opposite problem. I see the gravity of my husbands cancer, and he is trying hard to downplay it, because the heartbreak it has caused to me and our children is so hard for him to see.

Peace to everyone. Deanna

Post Edited (deannakay) : 5/25/2014 12:20:37 AM (GMT-6)

Wow, MsWW's statement about chemical castration being considered "too cruel, inhumane and barbaric to use as punishment in 41 states is the saddest part of ADT. I know that my husband is suffering from being chemically castrated...his T=20 on test last week...Stage IV PCa is definitely real cancer. All I have to do is look into his eyes to know that ADT has stolen an essential component of his psyche. I consider prostate cancer to be an evil disease as it strikes at the very manhood of my husband, I have slowly understood how essential testosterone is to the well-being of my husband in EVERY aspect of daily functioning. I have a sense that men on ADT hide most of their distress...

Lisa

dmlvt, honesty is never bad. Or something that should be apologized for. Perhaps loving your wife despite her belief is something you can live with. My hope is loving you and your honesty about reality is something she can live with too.

At some point, it would be great if her belief was in reality. As Gedman suggested, maybe therapy is the way to go for that. A good and long marriage, based on honesty and what is real, is worth investing in. Then again, maybe some very honest conversations between the two of you will be enough, perhaps with her having visited HW where the reading will not allow the luxury of believing this isn't real for men and those who love them.

Prostate cancer is lot of different beasts and the treatment outcomes affect everyone differently. I think what she is saying is not right in that you definitely have a serious cancer, but I can understand why it does not feel like that to her.

Your wife probably does not see a threat in this cancer killing you. Your undetectable PSAs have probably made her relax, so the impending sense of doom that many feel when their loved one has cancer probably is not there. Which, if you think about it is a great thing - both for you personally, in that she isn't worried and in that prostate cancer is a cancer which does have a great blood test to track progress. So for her it does not feel like a "real" cancer.

To her your ED issues, although important to you, are probably not as critical to her and feels like a chronic condition common to many men. She still gets to have you around and that is probably what is important to her.

I think I have a parallel in what is happening now with my family. my father was diagnosed with a 2cm leison in his pancreas the same day as my husband got the result of his ultrasound on his testicle which showed a painless 1cm vascular lump on his testicle. The pancreatic lesion feels much much scarier to me than the testicle lump. Testicular cancer has a great survival rate, if it is testicular cancer my husband will lose a testicle and very likely do well. My father on the other hand has the possibility of a cancer that is very deadly. Am I saying that my husbands potential testicular cancer isn't real cancer - no I am not. But I think people associate cancer with the feelings around it, fear uncertainty - something that can kill quickly, painfully and with a poor quality of life. To your wife, I suspect my dad's pancreas situation would feel like she expects a situation with cancer to feel.

Hope this makes sense.

An

Post Edited (An38) : 5/26/2014 3:27:59 PM (GMT-6)