I was gonna look up something about prostate cancer with brain metastases and as I typed out my Google search, “prognosis” auto populated.
Foolishly, I abandoned my original search and clicked on it.
Dr. Google has failed me a host of times and maybe, just maybe, what I saw was erroneous … I can only hope.
Jeff hasn’t seemed to catch a single break. This nightmare continues to get worse and worse. I understand what the ultimate result is, that bit of knowledge hangs over my head and heart like a dark cloud, but I so desperately wanted my Jeff to rally… to be around a “few” +++ years.
Evidently brain mets are rare with prostate cancer. Through a sea of headlines that predicted 2-6 months life expectancy after brain metastases diagnosis, I only skimmed 1 article that spoke to other cancers that most commonly have brain metastases.
Prostate cancer wasn’t mentioned specifically, but 3 years was seemingly the best case scenario. However, even that article started with grim outcomes up to 3 years.
I allowed myself to believe that we’d see Jeff’s radiation oncologist and he’d schedule radiation which would halt the spread in Jeff’s brain. Right?!
I guess it doesn’t work that way? I dunno. I refused to go down the rabbit hole of Google not knowing if I was reading the most up to date information or from reputable sites.
Basically, I just saw enough to scare me … to devastate me.
We meet with Jeff’s radiation oncologist tomorrow. I wanna know the game plan, but at the same time I wanna put my head in the sand.
I’d like to ask the radiation oncologist what we should realistically expect, but it’s not a question I want answered in front of Jeff.
I’m just feeling so defeated. Shitty circumstances… my Jeff deserves better.
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Pancake_Lefse
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My heart is with you ❤️. Don’t give up hope. The oncologists will guide you.
I spent the last year dreading what is to come and living in anxiety. Too much research was a bad thing for me. Nothing would have prepared me for what my family went through this past month. Now my dad is in palliative care. My lesson now is really to live day-by-day. Enjoy the current moments of love rather than dreading the future. I love every moment I have with my dad.
I'm very sorry to read this. I know Jeff's prognosis is grim. As a patient advocate, you are in the best and worst situation. The best is that you are there for Jeff at this most difficult time. The worst is having to be Jeff's ears during the appts.
Stay strong and positive and know that we are all pulling for Jeff.
Its hard to imagine what you wives go thru. I often think about what it will be like for my wife and family, to watch me deteriorate before their eyes, as my onc tells me is inevitable. Sometimes I think about driving my motorcycle off a cliff.
I pray you find some sort of peace with this. That God will take you in His hand and His peace and love will lift you up and support you.
Hey Johnny! What kind of bike do you have? I sold my toys at dx. I too think , as I pass by cliffs. But there has to be a better solution?? I’m resolute to suffering it out . In the end we all will
Relent. In the meantime eek out simple pleasures and hopefully some love . Peace and good days to you Sir! ✌️😎
I have a Triumph Thunderbird 1700cc. It’s my saving grace. And Ive come to grips with what I have coming, my thing is my family, wife, kids, grandkids, witnessing the hell that is sure to come. I’m a tough SOB and been thru a lot so bring it on, just don’t want my family to suffer. But, gotta live in the moment, and this moment is good so have to beat that drum, for now…
We all deserve better, but must get by with the hand we were dealt... My wife won't hear of my treatments and wants her head in the sand. Love Jeff with your whole heart and help all you can.. nothing more can be asked... Hope this group can help you through this rough time in your lives... God bless and live life to the fullest you can....
Hang in there baby! TMI on pc , you can easily overload. Don’t drive yourself nuts. Being with him is his blessing. He has love from you all.. one day at a time “ sweet Jesus” predictions are never good to hear . Stats are lies mostly . The truth is that no one can predict time lines. Comfort him and cheer him . How’s his spirit ? You might be sheltering us from his severe issues . What’s his pain level. ? We felt the same overwhelming response at first .concentrate on today . You’ll know more after the doc . Let us know please. Prayers for the family to stick together in love .. 🙏🙏🙏❤️
Cheer up! Pancake ! You’re not alone in this. We support you ! ❤️❤️🙏
Hi pancake …. My heart goes out to you for the anguish you are experiencing… Jeff is so lucky to have someone so loving, dedicated and involved by his side. You might try “ prostrate cancer caregivers group “ located here on this site … it’s moderated by cleodwoman , info is in the list of the right margin of this page. Plus your medical team has staff specifically trained to offer you some support and counseling , special for wives in your circumstances as well. Try giving them both a look . I’m thinking positive thoughts for you and Jeff, I’m sending out a big fuzzy warm e-hug to both of you.
Hi Pancake , im so sorry you are going through this !I totally get you want to bury your head in the sand but at the same time want to know everything .
my heart goes out to you i have just started this journey and already feel the weight of it all .
no man serves this at least of all the ones we love .
sending love to you and jeff and hope the oncologist comes up with a plan .
Wishing you and your hubby the very best in difficult times. I am hoping I am not in the same situation. I have never had headaches in my life but they started recently and don't seem to go away. I am hoping it is a side effect of abaterone (which is a listed side effect) but I have been taking it for a year. My MO ordered a brain scan and I am pretty scared about the outcome. If I do have brain mets, the cliff sounds really good,
As do all these brave men on here who are fighting this horrendous disease I lost my hubby jan 10th 2019 after 3 years of fighting my handsome,gentle, soulmate Steve x
Hi Pancake, Enjoy each day with him. Talk about the wonderful times and things you've done. Modern medicine is nothing like it was 10 years ago. The advances are amazing. Yes we all have our time. But todays modern medicine might surprise you. I'm living proof. 3 1/2 years ago they called in my family to the hospital for goodbyes. Modern treatments pulled a switch. Things are gloomy at the moment. Jeff seeing you puts a smile on his face. Sending prayers and love. Tomorrow will be a better day
My first dose of hard reality came 4 years ago when scans confirmed lymph mets as well as a largely untreatable lung disease. So, like the end of a bad movie, cut to the race scene. Which one will take me from my loved ones? Right now it seems the IPF seems to be winning and I take some consolation that I will thus avoid the rigors of late stage PC by way of death by smothering. But when I think about that there’s always the concept that a jet engine or a meteor might fall from the sky. And with the pandemic again raging who knows whether those vaccine jabs really worked or not? My point is that prognosis is a capricious thing. Yes, I have thought about euthanasia, but I wouldn’t want to waste a good motorcycle even if I had one. Advice? Take some deep breaths and soldier on. Best I can do this morning!
Telling you that I'm sorry for your predicament and telling you to hang in there just feels so inadequate and somehow hollow.... Please don't misunderstand me.... I am sorry to hear such heart wrenching news... That's one of the reasons I cut back on visiting these sites as often as I once did.... It hurts to read about so many good people having to endure such pain and sorrow... There are really good and compassionate people here and they are wonderful sources of information and if you need a shoulder to cry on or a sympathetic ear you can find that here as well.... I myself am stage 4 metastatic.... Spine and ribs.... But I'm also lucky... Prostate removed in 2013 at 50 yrs of age... Returned 7 yrs later.... Did one 6 month shot of lupron and 3 months xtandi and stopped treatment.... 2 and half years of .21 psa levels.... So I guess I'm saying is miracles happen more than we know.... Jeff may be the next one... Bless you! .
I understand that numb feeling of being overwhelmed. But you can't shield Jeff, you can only share your feelings with him. I sense you aren't the type to make it all about you which is good. You are living on the edge of tomorrow which isn't a great place. Live in the moment; live as if forever is bound with the hour and try not to let your thoughts race ahead.
GM I read your post and it so touched me like many have. I have no medical background but am a stage 4b person with Gleason 8, mets to lymph nodes in pelvic area. Did 26 rounds of radiation, on Eligard for 13 months, 9 months to go and maybe rest of life.
The Eligard caused extreme joint pain, my wife wrapped ace bandages around my wrists so I could sleep at night, walking sucked, could not work out, and I've done Tai Kwondo exercies for 35 years, no weight lifting. Weight went from 225 to 240 on Eligard. All the terrible symptoms, hot flashes, you name it. Dr.s said to endure it nothing they could do. So; please read this.
May 1, 2021 after watching videos on fasting, Dr. Berg and Dr. Siegfried, I started Intermittent fasting, eat only two meals a day, no snacking, for me 8am -4pm; then fast except for water, 16 hours til next day. I cut my sugar out, carbs down under 50 grams a day. Then last week of the month, I water fasted for two days; I redid this in June and July, and will again in August. The only difference for June was 3 days fasting, and July was 3.5 days. August will be 4 days. I'm working up to 7 days, as it takes time to acclimate the body. Jeff may not have the time.
As of today, I have no pain in any body joint, my weight is down to 217, and I was strong built at 6'2". The pain in my lymph node pelvic areas is gone. I have zero leg fatigue, I can go all day, and take breaks only if I want to.
You need to watch two videos below on fasting. It does work.
I can send you more. Fasting long term does kill cancer, it's proven. My urology nurse told me, ala, clinics dont' make money providing this, she was honest.
this was long, and I hope it is a good suggestion.
Mine is in the skull. You do mean in the brain and not the skull, is that correct? The reason I ask is when I first was told that it's in the skull I jump to conclusions that I'm going to end up a George Harrison. However I was assured that it being in the bone that it would never touch the brain. ???
One lesion in the brain with defined edges may be resolved by either stereotactic radiotherapy or surgery, but a poorly defined tumour border will likely be very difficult to treat without healthy brain matter being affected and so the treatment may well be chemotherapy or in the worst case, no treatment option. This experience from dealing with my sisters longstanding brain tumour as well as multiple clients of mine in Cancer clinics. My thoughts are with you and Jeff as it just seems to be cascading over him right now.
A couple of thoughts. I don't think I would have found this site without Google. While I have PCa, my wife has Parkinson's and I am her caregiver. We feel that both of us has to support the other the best we can. All of our information is shared between us regardless how bad it may be. IMO to do otherwise, an important piece of helpful knowledge may go missing.
You have all been on such an arduous road seeking the right treatments for such advanced PCa. You and your oncologist have tried very hard to beat back this beast and it can be formidable! You have obviously been by his side, advocating for him and taking care of him the whole time.
I like to call our spouses and caretakers, our Angels. You attend our many appointments, you care for us, you ask the important questions and stay up late at night researching all the new treatments online. You love us unconditionally. It is a great burden and a blessing for all involved. It is hard, emotionally draining and exhausting but it is also one of the truest forms of love. It is the essential bond between you both that brought you together and keeps you going! It is an awful and wonderful thing.
If effective treatment is possible and does not reduce his quality of life then, by all means do it. However, if the treatment has a low chance of success and will further reduce his quality of life, I suggest considering whether the added suffering for everyone is worth it.
Time together with family and friends for as long as possible is the most precious thing. Talking, sitting quietly together, eating a meal together or him just making you laugh. Enjoy every moment and when the time comes for him to go, you will have those memories and be able to help him in his transition.
May whatever path you choose make all your lives healthier, happier and more peaceful. Take Care and let us know how you all are doing.
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