husband has prostate cancer, I'm scared

lallamarie

Hello,

I am new to the CSN site. My husband was diagnosed with PC in early November and I have discovered that I really need to talk with people who have gone through or are going through this specific type of cancer. 

Two weeks ago my husband had his prostate gland removed. The surgery went very well and the catheter and staples came out yesterday. We have been told the lymph nodes are clear--thankfully--but that the cancer had grown through the prostate capsule in three places. The surgeon now tells us my husband may need radiation for six weeks. Our next PSA test will be early March. If it's as high as .4, he has to have the radiation.

Has anyone had radiation this soon after RP surgery? Side effects?

I'm starting to lose sleep each night and find my heart racing during the middle of the night as well.

I am grateful for your thoughts.

Trying to stay strong, but I remain The Worried Wife

GingerMay

Cancer specific

Hi Lallamarie & welcome. There are many people going through similar things, so I hope you find some comfort here. I wanted to suggest the "prostate" specific board to you on this site.  Others with similar diagnosis may provide helpful insight to any specific questions/concerns.  As for all the other aspects such as caregiving to a loved one, anxiety, sleepless nights, fear, stress, isolation, and of course just being exhaustedtired and wondering where your life went .... ya, you are in a great place with understanding people. We are here for you.  Post any time about any thing.  Cancer is a tough road. Take care of yourself and all the best to you and your husband.            

lallamarie

GingerMay said:

Cancer specific

Hi Lallamarie & welcome. There are many people going through similar things, so I hope you find some comfort here. I wanted to suggest the "prostate" specific board to you on this site.  Others with similar diagnosis may provide helpful insight to any specific questions/concerns.  As for all the other aspects such as caregiving to a loved one, anxiety, sleepless nights, fear, stress, isolation, and of course just being exhaustedtired and wondering where your life went .... ya, you are in a great place with understanding people. We are here for you.  Post any time about any thing.  Cancer is a tough road. Take care of yourself and all the best to you and your husband.            

Hi GingerMay, thank you so

Hi GingerMay, thank you so much for the welcome and kind words. I have visited the Prostate board as well, and thank you for the suggestion.

I have had friends and family members go through cancer, and friends and family members who've lost loved ones. Deep breath. You THINK you know what they are going through until it happens to you. I look back on my time with them when they most needed a friend and wonder if I came through for them. Everything is surreal right now. I want to wake up from this bad dream.

I've always felt I could handle most things if I got enough sleep. That isn't happening now. I am not quick to take any medication, most often just "deal with" whatever and prefer not to take anything. I'm not feeling overly strong right now. What has helped you and others?

Thank you, and once again, I appreciate your thoughts. Have a great day!

lallamarie

 

 

airborne72

My Experience

Lallamarie:

This morning my attention was directed to this forum instead of my usual time on the colorectal cancer forum (I am currently dealing with rectal cancer).  I read your post for two reasons - I am a prostate cancer survivor and I have been dealing with the effects cancer has on my wife and adult children.

In simplistic terms, cancer affects us physically (the disease) and also mentally/emotionally/spiritually (psychologically).  The person diagnosed with cancer deals with both while the family/friends deal with the latter.  Both are real and both must be addressed.

My story quickly - I was diagnosed with prostate cancer in 2009, by accident.  I was 57.  I underwent a radical prostatectomy and have been prostate cancer free ever since.  However, the surgery left me impotent.  The brush with death and impotentency had, and still have, an effect on me and my family.  It forced us to accept a new normal.  Not easy.  In May 2017 I was diagnosed with rectal cancer.  I am now 66.  The treatment for it and the effects on "us" are similar to what we experienced before, but worse this time.  The chemo/radiation, surgery, mop-up chemo, and dealing with a temporary ileostomy are very trying.  This cancer is much more impacting however since "we" have been through this before we are somewhat prepared for all that awaits. 

I am fatigued with it all and have my days of abject discouragement.  During those times I try to hide my feelings from my wife and family as I don't want to add to their burdens. I try to remain aware of the effects of this disease on them and protect them.  We are once again adjusting to a new normal.

From my perspective as the cancer victim (I only use that word because I can't think of another one; I am not a victim), let me offer you some of what I have felt, experienced and learned during the past nine years.

1) Cancer sucks.  It can be overwhelming and it will require a team effort to deal with it.  Spouses are a critical member of that team.  Just because you don't have the cancer does not mean that it does not affect you.  You are in this fight just like your husband, albeit with different challenges.  Consequently, you are entitled to feelings of despair, anger, helplessness and hope.  It is normal for you to wake up in the middle of the night with worry.

2) Prostate cancer can undermine a man's sense of self.  This is a very sensitive topic for men and most of us will not discuss it.  Just know that your husband may also be processing those feelings under the surface.  Let him do so, but also let him know that you love him.  Now is the time when that "for better or worse" condition kicks in.

3) Try not to let the cancer define you, your husband, your relationship or the rest of your lives together.  This is a new normal.  Life's about changing nothing ever stays the same (I lifted that quote from a Patty Loveless song - How Can I Help You Say Goodbye).  Cancer is one of those life changing events, just like getting a promotion, having a child, losing a job, etc.  If we are to survive, we must adapt to it and continue to live - to live a life that differs from what it was before.  By the way, that does not mean that the new normal is necessarily worse than the old normal.  Opportunities abound for expanding our lives during cancer and during its remission.  This is not an easy task.

4) As you are currently doing, take advantage of the numerous resources freely available to those affected by cancer.  We all need assistance of some sort in our journey through cancer.  This includes the person with the cancer and those closest to that person.

I wish you and your husband luck in your challenge.  Know that there are many others (too many others) who are facing the same challenge and processing the same feelings.  You are not alone.

Jim

lallamarie

Your experience

Dear Jim, I am grateful for your heartfelt response. My apologies I did not sign in and see it until a few mintues ago. I will try to address your comments.

Yes, I agree that cancer affects the whole family and in various ways, even if differently for individual people. I have watched our three adult children deal with this and while difficult, they process it in varioius ways. I find myself trying to be the strong one, the one they can lean on. I'm the worst at not taking care of me in the process. But, I saw what I was doing and have taken steps to begin taking care of me, too. I'm gonna be selfish now.

I am not bitter, nor is my husband. He's never said, "Why ME?!" Not once. His default setting is cheery. Always. He's been saying lately that he's staying "on the sunny side of the road." I love that. Me? I think I'm stuck somewhere in the middle of the road, trying to cross to his side but my legs feel heavy.

1) Team effort for sure. I sense this coming from our children and friends, that they will be here when we need them, likely before we ask. It's completely overwhelming but I feel the fog starting to lift. You acknowlege my feelings of despair, helplessness, anger...and I have to add incredible sadness; I am grieving for the future we may not have. Heartbreak is another. I watch him deal with this--currently it's the leaking after the surgery--and I just want to cry. May I ask, what has helped your wife the most? 

2) Fortunately, we both are able to discuss the effects of this surgery. We've always talked about everything. I realize I am a critical piece to his healing, and in every way. I realize it and embrace it. I would never dream of leaving him or giving up because cancer came to visit. We are in this together. We both have friends we can talk with as well as each other.

3) The thought of having a "new normal" and not letting cancer define us is exactly what has been on my mind the past few weeks. I keep thinking, "Hmmm, NOW how can we do this?" or "We'll have to do this another way," or "We WILL hit the hiking trails again but maybe not for a while." I'm adjusting and readjusting. I'm finding new ways. I'm meeting it as a challenge. I also believe new ways are not worse; I agree wholeheartedly with your statement. I think this is one of those life-changing events that could make or break those involved. I refuse to be broken. 

4) A close friend whose husband died from glioblastoma a few years ago (and she has since dealt with cervical cancer and had radiation this past summer) told me about the array of services available to cancer patients. I had no idea--I'd never dealt with this before--but now I know we will look at some of this, particularly if radiation is needed.

Can I ask about your experience with radiation? Also, how have your children dealt with this?

I appreciate so much your time and thoughtful response.

lallamarie

 

 

airborne72

An Addendum

Lallamarie:

Let me attempt to answer your questions.  Please know that I am not a psychologist, just a husband to the same woman for 45 years, with three grown children (daughter 38; son 35; daughter 32) and one precious granddaughter who is six months old.

Communications amongst all concerned is critical to a successful passage through this situation.  If your relationship has that foundation then continue to communicate as you have in the past.  The subject is much more sensitive and consequential, but if your communication system is solid then it will handle the topic.

My approach to it all (potential end-of-life issues, impotency, the five stages of grief, and physical issues) was best described as clinical and practical.  That has always been my style.  Deep inside I had flickers of fear and worthlessness, but I suppressed them as so many males do.  My objective was to return to normal, albeit a new normal, as soon as I could so I could resume my role as provider and regain some sense of value.

Impotency does not mean the end of intimacy.  That is one of those new normals.  For some of us it was a specific date and somewhat earlier than normal.  But it does happen to everyone at some time in life.

My children were OK throughout my prostate cancer journey mainly because of my state of health at the time (I was almost superman) and my sense of humor.  That appeared to be sufficient reassurance to them that I would survive.  The mental aspect of it all was in my head and I had to deal with that on my own.  Their response to my journey with rectal cancer has been different because I am no longer superman and this one has really knocked me down.  It is difficult to ignore chronic fatigue and the loss of 20 pounds, plus the too frequent medical appointments, etc.

Again, communication is critical to managing their reactions.  Facts can allay fears, but there is always an element of unknown with cancer - and with life.  So far, I have not kept any secrets.  This would prove to be very difficult anyway because our youngest daughter is a registered nurse who works with my oncologist.  She has a better handle on this cancer journey than I do and her knowledge and experience with it is expanded daily.  She works on the oncology ward.  I am suspicious at times that she may see her father laying in that hospital bed battling rectal cancer instead of the actual patient.  And that hurts my heart.  As any parent would, I want to protect my children from all harm and pain.  Communication is critical.

Leakage plagued me for only about three weeks.  That experience was so humbling.  I recall walking for exercise and simply waving to someone who drove past.  I urinated and wet my pants all the way to my knees.  That was my low point.  However, it subsided and I became continent the entire time that I was impotent.  For me, incontinence was more debilitating that impotence.

I opted to have my surgery at a large, notable teaching/research hospital.  Consequently, I believe that because my situation was a normal case of cancer I was herded in and herded out.  I was happy to see them in my rearview mirror and told myself that I would recover at home better and faster than at that hospital.  Saying that, I never got detail reports of my surgical notes.  I have no idea what stage I was, etc.  All I know is that my margins were clean and that I did not have to undergo any chemo or radiation treatment for prostate cancer. 

However, I did undergo chemo and radiation treatment for rectal cancer and in that process I shared the dressing room with other men who were there for prostate cancer.  I assume their experience was similar to mine because the location of my tumor and where my prostate used to be was very close.  That would mean that the radiation treatment was somewhat similar.  I underwent 28 sessions (Monday through Friday) for 5+ weeks.  The radiation finally became cumulative and induced diarheaa and chronic fatigue.  I am seven months out from that and still suffer some from fatigue.  It just takes time to recover.  Neither treatment routine is pleasant, but I found the chemo to be more severe.

In summary, it takes time and communications to get through this mess.  Either it will rectify itself or you will learn to accept it.  Either outcome is better than where you are now.  Give it time.

Jim

lallamarie

Once again, thank you Jim for

Once again, thank you Jim for your heartfelt and detailed response. I read this a few days ago and have been thinking on a response.

The waiting game is tougher than anticipated. Part of me wants to start the radiation because of what the surgeon said, mainly that his gut tells him my husband will likely need it. By that I think he feels he could not get all the cancer during the RP in that one, more aggressive spot anterior to the rectal wall. He said he wanted to take a wider margin but did not; rather, he chose to spare the rectal wall instead. So, there may still be cancer in there and we sit and wait while it may be growing. On the other hand, my husand could very well be cancer free. The nodes were clear as were the seminal vesicles.

Not only that, there is so little wiggle room for the OK to proceed to radiation. I've read the number can be as low as .2, the actual range from .2 - .5 (and our surgeon said no higher than .4). I've never been impatient, I've never needed to have everything right now. This is a lesson in patience I never dreamed would be so hard.

Unlike your experience waving a quick goodbye to the hospital, we tried to get as many details as we could. Our surgeon was far from tactful and I found myself barely able to hold my tongue on one occasion when he belittled my husband for asking a question about treatment. We had to find out about the clear nodes from our primary care doctor, not the surgeon. The path report had been back for two days before the surgeon called, and only after we called him first. So as to not burden my husband with my feelings and observations, I have held this inside, barely.

The leakage still plagues my husband, and it's been just over four weeks. He made a comment the other day how tired he is about this, his new "stylin" undies are not so comfortable. Just when he thinks it's getting better, he seems to have a relapse. I have read many times this is very normal. This, as for you, was his bigger concern.

It may be a very good thing having a daughter who works in oncology. It may be tough for her, yes, knowing what you are going through, but she can also be a comfort to the family as well. She might provide explanations when some (i.e. tactless surgeons) may not. Hers is a delicate position, for sure.

What I am most afraid of now is talking about the EOL issues. My masters is in Aging Studies and "end of life" was a big part of our studies. I cannot bring myself to talk about it, yet. We renewed our wills before the surgery which was not so scary or uncommon. Now, I don't want him to think that I think he's going to die, that this is hopeless (because I really don't think it is hopeless; on the contrary, I feel mostly positive but this is the big C and there are so many unknowns), so I spare him that worry. I'm not so good at talking about this; the other stuff I am better.

How did you approach that issue with your wife? If that's too personal I understand. 

I wish you a continued, speedy recovery and that you are gaining your strength and energy by the day.

Thank you once again,

lallamarie