CSN Login
Members Online: 15

New to forum - wife of prostate cancer patient

sel1891's picture
sel1891
Posts: 1
Joined: May 2013

Hello everyone,

I am actually on here trying to get some ideas and help for myself and my husband. Some background: my husband was not tested until he was 55 years old in 2009.  To make a long story short over several tests and different doctors his PSA tripled in a year, they did a biopsy and he was diagnosed with stage four prostate cancer with a Gleason of 4+3=7.  He was only given two choices: surgery or radiation and he chose radiation because he wanted a better quality of life now instead of later.  He finished his radiation treatments before Christmas in 2010.  He was immediately started on Lupron injections every three months.  He did them for about a year and a half but the side effects were too great so he was taken off of them in 2012.  In October of 2013 he had a new PSA test and it had shot up in 7 months from 1.3 to 7.36.  The doctor told us to come back immediately.  From Oct. 8th to the 24th in a new PSA test it went even higher to 8.34.  So they did another nuclear bone scan, and CT scan but thankfully they still did not find any metatisation.  So they started him on Lupron again and he will have two injections over six months and then they will check his PSA and see where things stand.  If it goes down again they will hold off and do injections only intermittently, but if it is still up they will continue the injections.  We are supposed to be hearing back from a clinical trial board who wants to work with him even though he does not meet the criteria for the actual trial.  But so far have not heard back since the initial contacts. 

They say his cancer is very aggressive but there is not much else that can be done at this point. 

My reason for writing is to try to get help for both of us on how to handle some of the side effects of the Lupron.  I have been doing everything I can think of to make him as happy as possible but have never dealt with this sort of thing and don't want to make things worse with good intentions gone wrong.  Although I have personally dealt with both cancer scares and actual cancer in the form of mole, it is nothing like what he is going through, but I still know the fear that the "C" word induces.  At one point I was told that I had Lymphoma which turned to be false but still I do know how it felt for a while anyway. 

But still I know it is much more important for him and I want to do the right things.  I don't think I am supposed to hover over him or smother him but I have always spoiled him and served him because I wanted to, so I still do that.  I have always been a positive and happy person and know the importance of staying positive even while facing reality.  My husband on the other hand has always tended to be more on the pessimistic side.  So rather than focusing on the cancer everyday in and out, I try to make him happy, smile, laugh, and just have as normal and wonderful a life as possible for whatever time he has - be it a few years or 10+ years.  I realize his limitations though and don't push anything that can hurt him.  He has his days when all he can do is sit in his chair and watch TV or sleep and then he has good days when he wants to work on the car or RV.  (After his radiation was finished, and after losing two friends totally unexpectedly to cancer) we sold our house and bought an RV.  He was already retired and I took a year off of teaching and then retired the next year.  But the Lupron or the combination of the cancer, radiation and Lupron really messes with him. 

Some of the things we face are: bone pain in his knees, feet, legs, hips and should areas (but he also has arthritis), problems with losing or damaging teeth, hot flashes which he controls with medicine, short term and some long term memory loss, total cessation of libido and intimacy, and severe depression, anger, and mood swings, and not really hallucinations, but imagining things or seeing things other than how they are which then causes severe anger outbursts.  Today the doctor prescribed a light antidepressent for him so we will see how that will work. 

It is the last one that we are having the hardest time dealing with.  Although I try to be understanding as much as possible, being human, when he jumps, I admit that I fail sometimes to remember why, and jump back.  Last year, we were work camping at a state park in another state.  He usually was the campground host or did light maintenance work and I worked in the visitor center.  We both helped the ranger do the fee counts and it was my turn on this day.  It took a little while and unbeknownst to me when I got back he had cooked breakfast anticipating a quicker return.  When I walked in, I was completely unprepared for his outburst of total anger and the accusation.   I have never given him any cause to worry about my love or loyalty to him, and I did not handle it well and was very hurt.  We finally worked everything out and he realised that he was having problems with his emotions and anger and depression.  He was fine when he went off the Lupron but recently started it again and last night we had another blowup.  I should have realized that it was the same way of acting on his part even though it was over something completely different.  It was really silly but he got completely irrate because I asked him if he always had to be so negative.  He has said that about himself many times and I am always trying to get him to have faith and believe that good things do happen.  I was not even angry at the time and simply made a statement as usual.  But again, I was unprepared for the total outburst and sadly, went into the defense mode.  I was very hurt and felt like he does not see and appreciate all I do for him.  I feel like we are starngers sometimes and that is so sad because we were always so proud of the fact that even after almost 23 years that we still acted like newlyweds. 

All I ever wanted to do was to make him happy and get him to think in a more hopeful way.  I don't want him to spend the time he has being miserable all the time.  But he has to want to be happy.  I can't change his physical problem of cancer.  I pray all the time for him and a total healing miracle would be perfect.  But if it is not to be, I want him to enjoy what time he does have.  He will face a lot of rough times towards the end and so there will the time for that.  But now, while he is able, I want him to enjoy whatever he is able to enjoy.  I don't try to force anything on him and let him decide what he can and cannot do, or what he wants or does not want to do.  I don't even care about the intimacy issue, because that is not what love is based on no matter how wonderful we always were together.  I don't want to give him any reason to feel worse than he does.  But what is so hard for me is the lack of his happiness and total focus only on the cancer and being depressed.  Also the lack of closeness between us a lot of the time.  I don't want to push him, but he always tells me I need to let him know what I want or need but then when I do, I am wrong for doing it because then he feels I am telling him what he is doing wrong.  So at times I just feel like we are strangers in the same house.  We love each other and I am in this till the end and willing to do whatever I can but I am human and sometimes it is so hard because I do love him so much so it hurts when he treats me that way. 

SO... I guess I need help in being able to figure out the signs, ideas on what I doing wrong or what else I could do to help him.  He needs help on knowing how to make himself be happy and not be so depressed.  We are hoping the medicine will help him some but we hate the idea of yet another medicine and something that could make him addicted.

I apologize for the length of this but I need help.  Thank you in advance to anyone who wants to tackle this.

    

ob66
Posts: 217
Joined: Apr 2010

     I think a lot of people would read this and wished they had the type of support you afford your husband. i have it, and feel like one of the most gifted people in the world. In our spousal relationship it is somewhat the reverse----I tend to be the "glass is half full" person, and my wife is more the "glass is half empty". But to muddy the water a bit, she is also the one who after "our" CA diagnosis, waited a short period of time and then said: "OK, it is time to end our "pity party" and get on with fighting this thing" .

     What I am getting to is that as I read on and on, I found that you were patronizing him a bit more than you should. Your circumstance and his is serious, but to a certain extent he needs a swift kick in the butt to get on with attacking the CA monster. He does not seem to be helping himself with any kind of positivism, and you are trying to "preserve" the time he has left. Ouch. That would be scary to me.

     What you describe is not heartening in any stretch of the imagination. But instead of becoming strangers in the same house, how about researching, studying, connecting (as you are here) to gain as much help, support and info as possible. I really do not choose to pick on you, for you seem to have so much love and care for your husband. But, as I read on and on, it seemed like you were overly sensitive to his "depressive" response to his condition, and it was parting the two of you when you should be working together with boundless honesty. In short, quit kissing his rear end and give him a swift kick in the backside to do as much about his problem as can possibly be done. 

     I hope you and he do not take this as overly harsh, as it is not meant to be at all. Positive vibes are needed, and he does not seem to have them. I personally have been through a daVinci proatatectomy, AUS surgery, Radiation therapy, lupron treatement for two years (yes, plenty of hot flashes), vitamin D therapy, Asian/Meditterranean diet, five days a week exercise of 45 minutes. All that started with a post surgery Gleason 8, Stage 3B, so I am no stranger to fear, of the evil of cancer. Give the b*stard the best fight you two can together.

Rakendra's picture
Rakendra
Posts: 77
Joined: Apr 2013

Misery arises because we don´t allow change to happen. We cling, we want things to be the same. If you love a man you want him tomorrow too, the same way as he was yours yesterday. That´s how misery arises. Nobody can be certain about the next moment - what to say about tomorrow?

A man of awareness knows that life is constantly changing. Life is change. There is only one thing permanent, and that is change. Except change, everything else changes. To accept this nature of life, to accept this changing existence with all its seasons and moods, this constant flow that never stops for a single moment, is to be blissful. Then nobody can disturb your bliss. It is your hankering for permanency that creates troubles for you. If you want to live in a life with no change - you are asking the impossible.

A person of awareness becomes courageous enough to accept the changing phenomena. In that very acceptance is bliss. Then all is good. Then you are never frustrated.

Excerpt from Osho

 There is so much in your post that needs attention that it would take a book to offer suggestions.  The two of you are in a situation that neither of you has any preparation, experience or knowledge of how to handle, so, of course, there are going to be unsolvable problems and misery.  It is like living in the dark and trying to guess where to go.  First, love is about accepting everything and person non judgmentally. You both are not accepting what is, but looking at what you want it to be.  Your husband is in a severe state of deep depression and does not have any skills on how to deal with it, and there is no ten minute cure.  Many of his problems are not from cancer, but from depression.  You are wishing he could be another way.  Well, there is not great likelihood that he will be another way without a great deal of help and inner work on his part.  The odds of that happening are very slim.

“I do love him so much so it hurts when he treats me that way. “   Love is unconditional.  If what he does hurts you, then that is YOUR problem, not his.  He has the right to be any way he chooses, you have the right to accept him as he is and support him as he chooses to be supported.  Neither of you have a clue how to deal with this problem because you have not done past work to prepare yourselves for this moment.  Of course, it has to be difficult for you both because you are not equipped to handle it in any way.

  I suggest you get some outside help.  You two do not have the tools to do this by yourselves. 

Love, Swami Rakendra.

 

  

VascodaGama's picture
VascodaGama
Posts: 1569
Joined: Nov 2010

Sel

I am sorry for your situation and that of your husband. Prostate cancer is known to affect everybody in the family and we have read in this forum several posts from wives in despair. The story is always very similar to that of yours. Requests for help on how to handle the cancer and what can be done to understand the mood of their husbands. The situation is sour and one wants only to be good.

There is no doubt that in your cases the fact of being a cancer patient and the medication is causing depression and making you blind to the reality. You image things worse than what is occurring. All seems confusing and one enters into despair. For the much you try nothing seems to work and you see only negativity in the results.
You need a break and time to pounder on the facts.  Embarassed

Most probably your husband is acting not at his own will. The hormonal therapy affects the mind of patients and one sees himself confronting situations that later are regretful. It happens to the majority of patients unnoticed but in some cases the status becomes nasty. I had such an experience at the beginning of my hormonal treatment when I notice that I was being aggressive when handling things as simple as paying an electrical bill. Queuing irritated me in shops and I constantly raised my voice when talking to people. My wife did point out these facts several times to no good effect. For me she was part of those confronting my ways in judging things. In other words I was the patient and the culprit without knowing it. It was in this very much forum that I awaken to the facts of what I had become. Arguing with other participants and survivors made me reflect about my errors. I now can control better those feelings and act on the reverse.

Lupron works at the pituitary. It mimics the luteinizing hormone (LHRH) that regulates the down “orders”(FSH) from our mind to producing androgens (testosterone). It causes the system to be flooded with “requests” confusing our natural ways, and with an end result that makes our body to stop producing testosterone because it “thinks” that there is enough of the “product” in circulation. Here are details for you to read;
http://en.wikipedia.org/wiki/Gonadotropin-releasing_hormone

At the brain the nerve system may be affected and such leads to several symptoms like blurred vision, dizziness, weakness, tired feeling, depression, sleep problems (insomnia) and memory problems.
The status of hypogonadism (low levels of testosterone in the body=castration) due to the lack of androgens leads to other symptoms such as the hot flashes, night sweats, joint and muscle pain, loss of muscle mass, impotence and loss of interest in sex.  Yell

Surely the above is not a good status and one confronting the effects may not be in good mood.
Some of these symptoms in my case were mild but the best to counter the nasty ones it was by getting into physical fitness programs. A change in the way of our life style is also good. I used to get into afternoon naps and dinner earlier to lessen the times I visited the toilet at night. Changing diets also helped a lot and by confronting the bandit with knowledge changed my negativity in judging my situation. I become an avid student and researcher of all related to prostate cancer, its treatments and effects. This gave me the power and peace of mind.
Traveling gave me the possibility in “communicating” better with my wife. I gave up with my job to lower depression and now I am enjoying gardening and fruit tree growing in my house. You may try getting your husband to attend this forum or visit a local gathering of Pca survivors for exchanging views. You also would feel different after talking with other wives on the subject in the same boat.

Control of cancer and medications through diet is a must. I recall my wife’s first “present” after been diagnosed with PCa which was a book on foods good against cancer. You can get a copy of UCSF‘s publication on Nutrition & Prostate Cancer in this link;
http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

You have not shared much detail on the pervious tests and diagnoses that made his doctor to recommend hormonal treatment so that we cannot give you better opinions. However, if the treatment is affecting his health to the extent you comment then he should change drastically the protocol been recommended by his doctor. Hypogonadism can become worse than the cancer itself. It can cause heart problems, diabetes and deterioration of bone (osteoporosis). Dr. Myers, a famous oncologist specialist in advanced cases of prostate cancer, (probably the best PCa doctor in the world) recommends stopping HT at the first signs of nasty effects. You can listen to his video on the matter here;
http://s0.videopress.com/player.swf?v=1.03&guid=bvGx4Cny&isDynamicSeeking=true

You can listen to more videos from him in this list;
https://www.facebook.com/askdrmyers/notes

 

Please remember that you are not the problem. Neither is your husband. The bandit is the bad of your story. I hope that you find some clues through my experiences to help you in dealing with your facts.

Welcome to the board.

Best wishes and luck in your journeys.

 

Rakendra above suggests meditation and I would like to add in this post the great benefits of acupuncture treatment for depression. It really works.

 

VGama  Wink

 

 

 

Beau2
Posts: 242
Joined: Sep 2010

Your recent experiences with anger and depression reminded me of my experiences; therefore, I offer a brief review of what I've been doing to address similar issues.

My daughter has suffered from bipolar and has had frequent bouts of depression and anger over the last 20+ years. When she is depressed her anger can come for trivial reasons and is usually aimed at someone she loves and feels none threatening (a parent). When she lives with me it is like I am walking on eggs .... always fearful of setting her off. Meds somewhat help her as do psychological therapy; however, to a great extent the depression and anger remains.

At first, I would try to set boundaries on how much abuse I would take from her (kick in the butt approach). Then I read a book where a bipolar patient expressed how much she appreciated her mother just listening to her complaints and angry rants when she felt depressed. Over the past ten years that's what I've done, if my daughter goes on a tear I listen, if she hangs up the phone I call her back and leave a message. It's not easy. I'd always been controlling and not one to let someone push me around ... that changed. Now I listen and try to empathize. If she's angry, I ignore it (her anger). If she complains or rants, I repeat her complaints so that she knows I am listening. If I think I have a solution I do not offer it until I see she has cooled down and will not reject it in anger. I let the doctors do the treatment ... I'm just there to help.

It seems that just having someone she can safely get angry at helps, and the anger vents and we can get on with other things.  Frequently, we will end up in quite a good state ... even laughing!

It's helped me too. Now I do not feel that I am defending myself against her anger. I feel I am helping her. 

Sometimes I think I may be enabling her anger .... but at least she knows she has someone who will listen and not judge. Unconditional love.

Good luck and best wishes.

Ps. Sometimes, I rely on a stiff Jameson's (ie. adult beverage) to get through a discussion with my daughter ... it mellows my mood and makes it easier for me to talk to her in a non threatening way.

Rakendra's picture
Rakendra
Posts: 77
Joined: Apr 2013

My family suffers from Bipolar.  I suffered for many years in much the manner of your daughter.  Two of the many things that have helped me are Gerovital and Meditation.  I inject gerovital three times a week and it is the most effective pro-host antidepressant I have found as well as being a great benefit to the whole body.  Of course, the FDA has banned it in America despite more than fifty years of world wide use and hundreds of studies.  And it is non toxic to the body.  Meditation is of great benefit for all and those suffering from Pca could  benefit from it.  As all know by now, I am a disciple of Osho, who also was the master Meditator.  His website is Oshomeditationresort.  His ashram is located in Pune India, a place I have spent much time in and a place of heaven on earth.  A visit there would be of benefit to your daughter.  Bipolar does not get cured, but it can be handled.  At one time, I was exactly like your daughter, mired in anger, depression and negativity.  It does not have to be that way.  But the path out is not easy or quick.  However, it is easier than the suffering caused by Bi-polar.  My bi-polar was the gift that I was given to force the changes needed in my life.  And I am grateful.  love, swami rakendra

Josephg
Posts: 26
Joined: Jan 2013

Hi Sel and welcome to the forum.

I truly believe that you took a great first step in coming here to discuss your situation.  You will find a wealth of knowledge and support here, from indivduals who have direct and personal experience with PCa, or a loved one who has PCa.  These folks KNOW your overall situation, and they have talked the talk and walked the walk, and they are all survivors.

As you can see, you have already received a number of responses.  And, there are already some great gems of knowledge and advice contained in them, for both you and your husband.  For example:

Life is change.  There is no going backward to what was. Your husband did not choose to have PCa, but that is his, and your, current reality.  Your only options are (1) to remain stationary, in which case, life continues to move forward around and without you, or (2) to move forward together, exercising as much contol over your own destinies that is possible in your situation.

Knowledge is power.  There is an unbelievable amount of information that exists and is readily available for you to assimilate about PCa.  Channel your energies to dive into research with vigor and learn about it, and digest it.  Understand the manifestations of PCa and the available treatment options, as well as their potential side effects.  Learn about the direction PCa research and future potential treatment options.  Equally important, understand the experiences of survivors, and what they do on a daily basis to extract the maximum quality of life, while living with PCa.  If this could be a joint endeavor for the both of you, so much the better.

Challenge your physicians, when treatments are not going well.  There is a reason why physicians call their life work a 'practice'.  Get second opinions, whenever they seem warranted.  This, combined with the knowledge from your research, puts you in the drivers seat, when considering treatment options.

Get your husband involved in this forum.  Your husband is not alone, and what is happening to him is not unique.   I believe that your husband will better understand his PCa, his treatment options, and the effects of both on him in his daily life, as he interacts with members of this forum.  That will give him the opportunity to exercise more control over his daily life and interaction with others.  I am much better in dealing with my PCa since joining this forum, as I've been through daVinci prostatectomy, AUS surgery, Radiation therapy, Lupron treatment.  I found the experiences and advice shared in this forum to be extremely helpful, in fact downright critical, in assessing and deciding upon my treatment options.  Luperon did strange things to me and impacted how I interacted with other people; however, understanding this through research and education, has helped me to better control myself while I am on it.  

Jointly manage your relationship.  Relationships, like everything else, change over time.  If you need outside assistance, such as counseling, then both of you swallow your pride and reach out for it.  I know that my relationship with my wife changed, when I was diagnosed with PCa.  We work at managing that change every day, versus letting it manage us.  We have always used the following poem by Kahlil Gilbran as a foundational guide for our relationship, and it has become even more relevant for us, since my PCa diagnosis.  Perhaps, you will find it useful, as well.

“Let there be spaces in your togetherness, And let the winds of the heavens dance between you. Love one another but make not a bond of love: Let it rather be a moving sea between the shores of your souls. Fill each other's cup but drink not from one cup. Give one another of your bread but eat not from the same loaf. Sing and dance together and be joyous, but let each one of you be alone, Even as the strings of a lute are alone though they quiver with the same music. Give your hearts, but not into each other's keeping. For only the hand of Life can contain your hearts. And stand together, yet not too near together: For the pillars of the temple stand apart, And the oak tree and the cypress grow not in each other's shadow.”

I wish the both of you the best of success in living with and managing your husband's PCa, and I hope that both of you become active members of this forum, where you will find knowledge, support, and companionship.

hopeful and opt...
Posts: 1332
Joined: Apr 2009

MEDICAL ONCOLOGIST...I strongly recommend that a Medical Oncologist lead your husbands medical team, the best that you can afford. There are approximately 30 in the USA who specialize in Prostate Cancer. Additionally, excellence generally prevails at major cancer centers such as Sloan Kettering, etc.

HEART HEALTHY IS PROSTATE HEALTHY... to add there an expert in nutrition and life style for those with Prostate Cancer. His name is Mark A. Moyad, MD, MPH. He wrote a few books' one is Promoting Wellness, I have the third edition(not sure if there is a newer one). He regularly contributes to various publications from organizations that specialize in helping prostate cancer patients. One is PAAct... www.paactusa.org   Another is is US TOOInternational Prostate Cancer Education and Support HotSheet   www.USTOO.org 

Go to LOCAL FACE TO FACE SUPPORT GROUPS Two international support groups that may have a local chapter in your area are www.USTOO.org and Man to Man. There may be  other support groups in your area that are not part of these organization..check out the internet.

Each support group is somewhat different from each other...some are emotional based, some are knowledge based. For example, at a support group that I attend, there is a separate meeting for the women of the prostate cancer survivors.

Research, research, research.....that is read books, journals, etc. search the internet...

Let us know where you live; we at this board may know of resources in your area.

As Vasco mentioned, let us know about the initial diagnosis.

Best

starr15
Posts: 31
Joined: Oct 2011

Professional counseling for you and or him may be very helpful.

Double Whammy's picture
Double Whammy
Posts: 2321
Joined: Jun 2010

In the breast cancer world, we often refer to these side effects as "collateral damage".  Many of us suffer the symptoms you're describing from our very own hormone (estrogen) deprivation treatments (often not taken very seriously because afterall, we're women).  I don't know why some people have side effects and others don't and I doubt the medical profession does either.  I don't think I have any side effects, yet my husband (on Trelstar) is just "different".  I would not call it depression, just "different".    Ah cancer, the gift that keeps on giving and then reaches out to effect everyone involved.  Having been both a patient and now the spouse of a patient, the experience is definitely different for me as well.  As a spouse, we want it to stop and we want to fix it for our loved one.  Having been a patient,  I know that it really is out of our hands and knowing what resources are available and being helpful in empowering our loved one to seek and find their own solutions (and being involved if they want us to be) is really important. 

Anything I can add is purely anectodal, I'm not you and I'm not your husband.  I have found everything related to prostate cancer a little befuddling.  I was very involved in my own care and treatment and think my husband is being a little passive (he would disagree).  But it is his approach, not mine to take and believe me, if I felt it was wrong, I'd intervene.  But cancer is not a one sized fits all, nor is its treatment and what works for one person doesn't always work for another.  As a partient, we don't realize how much the illness effects everyone.  Afterall, it's OUR life.  But as a caregiver/spouse, you do need to look after yourself as well as your loved one - and find a means that works for you.

There is a very good little book called "How to Heal" by Dr. Jeff Kane.  It's a guide for caretakers and is basically a guide for caring and communicating with someone with a serious illness.  The healing part is about the person, not the disease and yep, Dr. Kane is a psychiatrist. 

And about professional counseling - absolutely. 

Good luck to you and your hubby as you navigate these trecherous waters.  Take care, and seek professional help, maybe starting with a frank discussion with your oncologist asking for referrals.

Suzanne

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network