My husband has metastatic prostate cancer diagnosed 3 years ago and now has a prognosis of 6 mths. My question is I have been on the internet every minute I can spare, I challenge all doctors, seek out other answers etc. He does not participate in any of this nor do his children - he has been living life to the fullest, I think the children are either not informed enough, in denial or just don't care. My question is why do I see so many men on this blog trying to find answers themselves and have such knowledge which I have but he doesn't. He keeps saying he should learn about this or get a handle on that but he doesn't. He is an extremely vibrant, energetic, extremely smart and successful 60 yr old which is why I am interested in hearing your opinion and assuming you are also intelligent and you obviously have a desire to stay alive and not just sitting depressed on the couch waiting for someone else to fix you and you are you seeking knowledge, have such knowledge and are questioning the healthcare you are receiving or may be getting instead of relying on your doctor, caregiver or whomever - but my husband is leaving it solely up to me? Thank you for any responses.
Cindy
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morco8
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Okay my Oncologist estimated 44 months last Nov, I have Gleason 9 stage 4, Mets to Lymph nodes and just about every bone in my body which is extensively into the Marrow on both Femurs.
Myself and my wife have obviously looked into whatever we can do with diet and exercise and what drugs are available in this country, I know in my own mind that if I stay positive it will help. I trust my Doctor knows his stuff and as I understand, the way it works here is my case is monthly reviewed by a panel of Doctors who all agree on what future steps might be needed.
Unless some unforeseen setback hits me, I'm pretty sure I will sail past that 44 months, not because the Oncologist was wrong but because I'm young at 56, I responded really well to treatments and I was already at a high level of fitness and having no other medical conditions to complicate my current condition.
My husband is the same way. I summarise the things I think he needs to know and filter the negative things. I don't mind because I want him to stay positive. I do believe that it's essential for the man or someone who loves him to be on top of the research. I know for a fact hat optimal treatment is not necessarily offered, especially when it's not (yet) the standard of care.
I have to admit, I am surprised to see how often this is happening. There are quite a few men with prostate cancer who are not participating at all in these discussions, leaving it someone else in their family to do it for them. I also have to admit it makes me a little angry to read this post. Some here may disagree with me and that's OK, but I don't see any excuse for this behavior unless it's someone who is physically unable to advocate for himself.
Someone needs to thank you for the effort you are putting into this for your husband. I don't know if anyone is, but I will. Thank you for what you are doing from someone who knows how important it is, from someone who depends on that kind of knowledge to make good treatment decisions that extend his life.
I was at a support group where someone was explaining the treatment he did and a new person asked: "Did your doctor make that decision or did you?" I interrupted and told her: "You are the one who decides, not your doctor!"
You said: I am interested in hearing your opinion and assuming you are also intelligent and you obviously have a desire to stay alive
You hit the nail on head. I remember when I was first diagnosed I was angry about it and was just thinking I didn't want to do any treatments at all. I remember thinking: well do you want to live or not? If you do, you better start fighting and learn everything you can. I don't expect anyone to do that for me. My wife helps me, supports me, goes to doctor appointments with me, gives her opinion, but I don't ask her to do the research and learn what I need to know to make treatment decisions.
With all of that said, there is wealth of knowledge here if you want to give us the details about your husband who is by the way, VERY lucky to have you!
My wife had breast cancer and was the same way. She wanted to just live her life and let the Dr do what he does. I was left to do the research and found the best dr who had a new treatment for her aggressive form. She’s fine 18 years later. It didn’t bother me at all. I was glad yo take over. It was her way of dealing with it and she wasn’t going to focus on her disease. She did chemo and the works and never complained once. Even when she lost her hair. It didn’t bother me at all. I was happy to be there for her. In a way we all say “enjoy the moment” and “don’t always think about the cancer”. These types take that to the max and enjoy their life and don’t think about the cancer. Sometimes as I visit this darn site every nite to learn something new, I wish I could be a little more like my wife was and not think about it as much. My point is we all deal with it differently. Look at the bright side. You say he “lives life to the fullest “. Would you prefer him to whine about his condition and always think about to the detriment of enjoying his life? There’s a lot of men that go into depression with his diagnosis and are miserable to be around. This one goes under the category of “be careful what you wish for”.
I think about 99% of all PCa patients just do what their doctor recommends and do no research on their own. However, many read about possible supplements and take these.
If all PCa patients would participate in this forum, I think this could not be handled.
Different people from different backgrounds have different styles when it comes to doctors, illness, and related family matters. Some put lots of trust in certain doctors and just keep on with things with little questioning or a desire to get involved with the "details". Others really want to learn and control as much as they can, often in a shared decision-making relationship with their doctor(s). The relatives of such people often are comfortable with a similar style. Sometimes they are not. Finally, sometimes the dynamics and default styles between patients and primary caregivers can be significantly different, both for medical things as well as other aspects of their lives.
Every now and then a patient may come to be overly-dominated by a "super caregiver" who wants more to be in control rather than lovingly working together toward their joint needs in such stressful times. It can work other ways around, too.
It might help if you try to start talking more with him about these specific feelings of yours on this subject. Not so much as to blame or criticize, but to be sure he knows about your own fears and frustrations and your own needs for support as a caregiver in the prognostic time ahead, and beyond.
He may or may not change a lot. If he may seem to be clinically depressed or anything like that, bring it up with his doctor(s) for a professional look-see.
There may be ways You can decide to change things, so that You get some more support and relief that you need, as you continue to be a primary caregiver.
You might be able to pull a few tidbits for personal consideration from this discussion list about caregiver stress and burnout: (You, too, need to "live life to the fullest", even while being a caregiver... and/or beyond.)
There are two models for doctor/patient relationships - shared decision making and paternalistic. Paternalistic leaves everything to the doctor and requires a lot less work. Shared decision making requires that the patient really understand all his options, and the doctor understand patient preferences. It's a lot more work for both. You clearly prefer shared decision making, and I guess your husband and children put their faith in you. Why should they do anything if they trust you?
Is it that the doctor gave him a 6 month prognosis so he decided he is going to die in 6 months. I never let anyone tell me how long I have. And I have proven all of them wrong.
He could get a lot of years of good quality life if he would take the time learn about Pca and what he could do for himself.
Had a nurse who told me i was stuffed. Put the house on the market placed a deposit on a unit for the wife gave away heaps of stuff. Then i settled down got myself a expert oncologist five years later still positive.
Many words come to mind: Denial, Fear of dying, Anger, Depression(unresolved) and most of all Macho Male(invincible).
You are doing a wonderful service but is he listening?
All of us need a support group where it is safe to express our real feelings, fears, share joys, etc. It might be a cancer support group but it might be some other kind like social, work group or church related. Men do not ever share feelings honestly with those outside a good spousal relationship.
I am appalled that he is not talking with your adult children about his cancer. I even involve my older grandchildren. We have a family meal every Sunday night for those who are in the area and we have grown closer since my cancer has become more life threatening.
Palliative Care and especially a social worker are a very helpful team. Our minister is always available to lend an ear and support us.
Read the stories here and you will find that few of us believe that a medical provider can accurately give you a prognosis in months except at the very end. With new treatments, genetics, targeted therapy this is an ever changing dynamic.
Above all stay positive together. We still laugh a lot and enjoy every opportunity to be with family and friends.
6 months? Tell the doctor to shove it.... He'll be around for a long long time.
Men are babies.... Women are stronger.... When a man goes to see a doctor (which is rare) and the doctor tells him he's okay... then get out of the man's ways cause he's bolting out the door. When a woman goes to the doctor (frequently) and the doctor says she's okay the woman will ask the doctor "what do you mean about okay?" That's it in a nutshell. Your husband is playing ostrich and you are watching out for his butt. He's fortunate that he has you around and should kiss your feet every day*.
Now "I think the children are either not informed enough, in denial or just don't care." I don't know their ages or if you and your husband are their real parents. But if it were me (you that is) I would gather them around the table and talk (not eat) turkey to them. They have to share the burden of ALL of you living with this disease. Put your foot down and tell them that it is a life and death matter which must be dealt with as a family. Damn it!!!
Have you accepted this 6 months prognosis, do you know how and why the Doc came to this conclusion? i.e is he not responding to treatments or you just run out of treatment options. will you keep pushing for treatment options?
I was told in 2007 that I had 5 years and then in 2011 they found metastases and I had 30 more radiations and I started Lupron (Eligard - generic). They gave me 2 years and I told everyone my will was in the freezer and I donated $5,000. to the church gave my friend a car and got ready for my demise. Well, it has been 6 1/2 years and I have been on Eligard until last year I stopped therapy. My doctor called me on Christmas Eve and told me I no longer have cancer! So you never know. The church prayed for me and my friend moved to another city and I do not talk to him anymore. I will see my doctor in June to see what the lab tests show, but all is well on the home front. I would check ALL my lab tests to see if something is too low or too high. I had problems with my hemoglobin, Potassium, Vitamin B-12, and vitamin B 3. Then ask your doctor what you can do about that. I wish you well, a full life, and love and prosperity. The doctors are doing their best, but they may not always know what the out come will be. So keep asking questions and just keep truckin'.
Thank you so much to everyone who replied - it was my first blog and I am amazed how heart warming it is to get such valuable response from all of you!!! We are all living in such tough times and I feel a hug from each and everyone of you and BACK TO YOU!!!
I sometimes think I am a little overbearing with my care (thanks to someone who said that I agree) but I dont' think he would be alive at this point if it wasn't for that. I believe he is in denial which is good he keeps on going strong - racing cars, motorcycles and whatever else he can do although hes been through so much lately starting to be fatigued and thinking about maybe not doing so much... - numbers are just numbers but I cry when I think about the month not the year mark and wonder if we are not listening carefully enough and should plan for the other plan... His kids are either in denial or just bitches but I can't worry about it anymore - I realize now it is like friends - wow do you find some that are the best and others who you thought you could rely on aren't there - family, friends or not- I am going to pick who I like from here on in!!! Long story short my honey has not just metastatic prostate cancer which I had finally thought we could go to Bad Berka, Germany treatment for leutissium, and then he had a nephrology stent change surgery and the surgeon could not change one stent so left it out and left the old one in (so we are dealing with kidney failure) and then right after the surgery which of course was unsuccessful he now had pulmonary embolism in is lungs (but now treated successfully) but the guy is so darn strong that after being released from hospital - on oxygen - on Sat he is now at 95% and walking and talking and eating and doing all the other stuff so I am waiting for him to be strong enough to get on a plane and get the right treatment. We are in Canada and out treatment is limited to standard of care and regulations so he was diagnosed in 2016 May metastatic, given up front chemo with lupron which failed after a year, went on a clinical trial for 1.3 yrs on abiraterone and either IPAT or placeboe. has been off any meds since waiting for something else and because he may not be able to fly to Montreal CA for a scan that we don't do in BC and is not stable enough to fly to Germany for treatment at least not now is now on another frigging hormone trial drug which obviously does not work and time is running out ... running out of steam and strength... Canadian health care sucks and somehow I need to get him better treatment.... Comments/Advice/Wishes????
The trip to Germany is hard on the body in of itself, so great decision! It takes a week to acclimate. It is of little stress to my husband and I because we are both pilots and travel extensively for a living so clock changes, driving a manual in foreign country, exploration in Foreign language, etc are easy for us. Plus we bring bikes and buy organic foods & do meals in our AirBNB to limit risks of food contamination (or meals that surprise us because we don’t know what the hell we ordered 😂).
But a few years ago we were at the German clinic with an American that had stage IV lung cancer. She did GREAT her 3 weeks here and showed tremendous improvement. Then hopped on flight home, her sister & her both got pneumonia when they arrived home and she passed away 😬
So it is worth considering when entertaining the idea.
There is a clinic in Canada that looks like they have same machines now so we may explore tha next time. integratedhealthclinic.com/...
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Meanwhile, ... you mentioned multiple treatments and wanting comments/advice/wishes for getting your husband good treatment, coming from the perspective of starting in the Canadian health care system, in British Columbia.
If you may not have already seen him, Doctor Kim Nguyen Chi in Vancouver, BC might be a possible specialist to get a referral to from your current doctor.
Doctor Kim Chi is very involved in BC Clinical Trials for prostate cancer.
Here's a link to a Clinical Trial involving LU-177 where he is listed as Principal Investigator in Vancouver, BC. If you go down to the participating Locations, you will find an address, phone number, and email address, related to interest in this trial.
Study of 177Lu-PSMA-617 In Metastatic Castrate-Resistant Prostate Cancer (VISION)
If your doctor may need help in getting a Referral to Dr. Kim Chi, here is a link with some guidance for how to do it within the Canadian health care system in BC.
Good Luck with finding the best possible care. Perhaps something closer to home may work out if his health situation may prevent him from making difficult out-of-pocket trips to Germany or elsewhere. He's lucky to have you as such a concerned and diligent caregiver.
Sometimes when there is so much in a post, it takes a bit...I so get your frustration. It’s like holding something in and when you get a chance to vent it ALL comes. Very forcefully.
I know sometimes I feel like I am the only one paying attention. The doctors don’t seem to really care, just doing their routine. My husband often acts like nothing is happening. Our kids are the same way. And then the people who ask me about my husband ‘how is Kevin doing?’ I don’t even have an answer that I can say without going into a long story. 🤮 Hang in there sister. You and I are a lot alike. Try to spend time everyday just on yourself. (Talking to myself too. )😘
As a wife, my contribution is to support my husband by researching, lining up appointments, keeping track of all charts, being informed on all options & lingo, asking intelligent questions and even using this great group as a solid resource. My husband stays in his "healing bubble" implementing all I send his way without complaint. With complete confidence and gratitude in me. It is a win/win. He doesn't need the negative "odds and statistics" found on the internet. He doesn't need to know all the side effects that different men suffer. He just needs to concentrate on his own healing! TEAMWORK.
Thanks for the insight on what works really well for you and your husband. I'm going to make a note to myself to try using that "Not just yet, Dear, I'm in my 'healing bubble' right now." line with my wife. (Wish me luck! Ha. Ha.)
I see swimming in the River of Denial as one of the few meaningful gifts I have to give my husband right now.
Of course he wants to live. But the stress of learning what's ahead for him is overwhelming. There are so many things I wish I didn't know. By taking that on, I am allowing him to live in the now, and to know that I'm advocating for him in every way possible.
I live in Vancouver and I am under BCCancer Agency care. I advocate for myself and do research through this site. I have other countries in mind for nuclear Lu177 or similar. I do not qualify for the Lu177 trial through Vancouver as have not had chemo and PSA<2. Currently on Abiraterone.
My wife supports me and comes to appointments. At the end of the day it’s me who has to make treatment choices based on current trials and treatments as well as what is available under Canadian Standard of care.
My grown up children are kept up to date on what’s happening. One living out of town moved back to be with the family soon after my diagnosis in 2017.
In your marriage, it sounds like you two complement each other well. We all have something that our spouse loves about us and something that annoys our spouse. You found one Ignore it. Keep doing what you do well which is the research and support. I don’t think everyone needs to become an expert on cancer if it is not what they are inclined to do. As a team, do what makes you both enjoy the life you still have together whether it is 6 months, 6 years, or longer. Prayers for you both!
I, too, have done all the research and care of my husband over the last 19 years. It has spoiled my husband but taken a toll on me. He never thanked me until the doctors started commenting on my knowledge, organization and advocacy.
I should have followed this Montessori motto, “Whatever you do for me you take from me” but now it’s too late as the opposite is ingrained in our relationship.
Regarding a doctor giving a prognosis, if one doesn’t want to know then don’t ask. I wanted to know just for planning.
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Ignore it. Keep doing what you do well which is the research and support. I don’t think everyone needs to become an expert on cancer if it is not what they are inclined to do. As a team, do what makes you both enjoy the life you still have together whether it is 6 months, 6 years, or longer. Prayers for you both!
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