Salvage radiation did not work. how l... - Advanced Prostate...

Advanced Prostate Cancer

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Salvage radiation did not work. how long left to live?

Choice125 profile image
56 Replies

Hello, again. So, my ex has went through surgery, then salvage radiation...it DID NOT work. his PSA is over 1 and it seems that he has it elsewhere else in his body. His gleason was 8 I think , all inside the prostate. So, now what? I was hoping that once you cut it out, you are cured. Then OK, you radiate the prostate bed and you are cured. Now, there is no cure. I have a 7 year old daughter. He went through scans before, and they didn't find anything anywhere. He is going through the scans now as it is clear now he has some mets sowewhere. I really need him. Alive and working. He has an easy, creative job, engineering job with flexible hours and great pay. I homeschooled and went to college myself for engineering technical work. I was going to go to Russia for fertility treatment to have a son (everything donor). We have everything frozen and ready to go. I bought the tickets to go, then that virus hit (tickets cancelled. Borders closed) and his PSA rose 4 times in 3 months. He is not on any meds at this time. He is 69. What do I do. I am sitting at the table with him and I know he is going to die from cancer. How long? 2 years? 3 years? Can I relax? I am soooo depressed. I wilI be left with 2 kids to raise on my own. don't have any family here (Canada) and an elderly mother in Israel. What do I do? If I go for another baby, he might not even see him growing up into toddlerhood. We don't have any debts, but not much money as his ex wife and kids cleaned him out nicely. I have this thoughts that it is just a couple of mets in the bones probably that he can control with meds and just continue living. In my darkest moments I think he is going to die soon. I am 45 and I feel that this virus is stealing my ability to have another baby, as the tickets to Russia were cancelled and the country is in lockdown and God knows when I can go. By that time will he be sick? Sorry for rumbling. I am drowning in depression.

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Choice125
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math33 profile image
math33

There is much help for him today, treatment (MO) is much different than a few years ago.

He will probably live to be 100. He should try and stay healthy eat right and exercise.

Larry

Choice125 profile image
Choice125 in reply to math33

Thank you Larry. I feel like I am living in a nightmare with tiny specks of hope. I, like every woman had plans. Every woman has plans for their man. He was going to teach my daughter electrical engineering. Transformer design. I was styding at home with him too. Made electrical certificate from college with his help. Now plans are crumbling. I really want my daughter to be a Transformer designer.

math33 profile image
math33 in reply to Choice125

I was told I had 18 to 24 months in 2015, so started looking for clinical trials reading / learning all I could no one else can do it for me. My wife is always there for me, just not on research.

Finally in 2016 was offered Provenge, it worked and I'm still good today. ( I like Provenge)

My mind is the darkest at 3am and then I get up at 5am and drink coffee, everything is much better.

Larry

Choice125 profile image
Choice125 in reply to math33

I will ask about provenge

GP24 profile image
GP24

I am in a similar situation, mets outside the prostate bed, Gleason 8. I am living with this for five years now and my last treatment allows me to live without meds or side effects for 1.5 years now. I am confident to live for ten years from now. I do not think I will die from prostate cancer but rather from a heart attack like other men.

Therefore you do not have to worry, there will just be treatments and seeing doctors in the future.

in reply to GP24

Me too. Gleason 8 , 5 years ago . Heart is the prime risk now. Thank for posting. Be well ...

pjoshea13 profile image
pjoshea13

My surgery failed immediatly, as did salvage radiation. That was 16 years ago. I have bone mets but manage them. I don't expect to die soon.

Having said that, I put it down to things I have done, like inhibiting inflammation & coagulation. & the supplements I use. To be an anomaly, one has to work at it.

There are two schools of thought here. The "nothing works" school says (a) find a good doctor, (b) follow standard care protocols & (c) don't worry about the statistics. The other school says damn the statistics, we have nothing to lose by getting involved in our own health. There are a hundred & one opinions as to what that entails, but that's OK.

Best to both of you, -Patrick

Magnus1964 profile image
Magnus1964

Xofigo could be a next step.

Choice125 profile image
Choice125

Yes, I am starting to thing that he has micro spots too. I will ask the doc for lupron + casodex. As for my fertility treatment, I have frosen embryos in Russia. He hadn't had sperm for decades. Russia is on cutting edge of fertility treatment. Basically they have very little regulation abd one can buy anyhing and everything. Sex selection? Ok, buyong eggs? Bying sperm Ok? Buying embryos? Ok...dialysis to keep the baby? Ok. I have antibodies in my blood that make me barren. Absolutely. 0% of carrying a baby to birth. They offered a treatmet, plasmapgeres and I had my daughter. Here, in Canada, they didn't even hear of my dignosis. I had to stay 2 years in Russia to get pregnant. I was hoping for shorter period this time, like half a year.

ron_bucher profile image
ron_bucher

My salvage radiation of the prostate bed in 2008 put my Pca in remission 7.5 years. When my PSA returned 4 years ago, my “plan C” treatments were Taxotere, additional radiation (of lymph nodes outside the prostate bed), and 9 months of Lupron. I’ve been in remission again for 3 years.

Prostate cancer is like a game of tug-a-war.

in reply to ron_bucher

Right on ron! 🤙🏽

Choice125 profile image
Choice125

Thank you guys for all your replies. It actually does help. I cannot talk to anybody about it. One of my friends just tells me that I should be happy with one child and forget about another baby. Go to college full time and prepare to bury him in the ground. That military preparation for his death would wipe out not only my dreams of another kid, but make me stressed as hell as I cannit handle more than one of those courses abd also be there for my daughter, teach her nath, reading, writing , electricity. ...living in preparation for disaster is also a disaster. Especially for somebody like me, who is prone to depression. I wake up and just want to die. We have storage full for things for the baby. My daughter would not give anytging away as it is for her brother, Everything for her brother. He practically living and breathing here. Abd corona virus isn't helping too, I asked him to write an emergency will as he might get sick and just die right there. These thoughts of deathz news on TV of death... it is just make me sick.

jfoesq profile image
jfoesq in reply to Choice125

Choice- I apologize for getting personal, but you seem overwhelmed and admit to being depressed. You are dealing with a lot, including homeschooling a child.

I too hope and believe your husband may live for many more years, but even if that ends up being true, will having another child while you may already be overwhelmed and depressed make things better for you, your family and that new child?

Choice125 profile image
Choice125 in reply to jfoesq

I wake up and just shiver in fear. On one hand, I have spent 25k just to freeze the embryos. As the my daughter was my last from my 12th IVF cycle. I thought I would have another daughter and I have 8 embryos frozen, 5 boys and 3 girls. My pregnancy was just horrible, I swelled up like a balloon, had a high blood pressure... the works. My ex was dumping me constantly by phone and email as he was chasing other women and "freedom". It was awful. Just horrendous. Now, that he is finally is sitting on his ass and on board, he is sick. It is just not fair. I am into mechanics and electronics and we have a huge collection of building sets, and electronic sets and I really need a boy to get a full use out of them. I love 1980s toys like Robotics and construx and the thought of no one using them is killing me. my daughter is not into them, she just plays with other stuff around the house, and makes her own toys. She loves marbles and she trains them, and makes playground for them... We are into "stem". who will use all the toys? We have a house with toys on the floor, paint on the walls and furniture and that's the way we like it. I can bring 4k a month if I work, but I am an electrical drafter and my work is mostly contract. I can keep us, but I am thinking of getting up the 2 kids in the morning to school while getting ready to work is hardly doable, unless I work partially from home. When she went to school, I would get her ready, lunch ready, nice and nutritious, and he would drive her to school. I will need physical help, extra pair of hands. my mother cannot help. My ex takes her to her Abacus classes in the evening and I went to college part time, or he buys special erasers that we need, or tape from Michaels, or picks up eggs, or other "pick up" on the way items that require a second pair of hands. He takes her to playgrounds and sits there for hours and hours while she plays...Sits in Mc' Donalds play place for hours, sits at the splash pad for hours, takes her skating, swimming... I cannot buy this help. He is also teaches me electricity, like hours and hours which cannot be bought too. Who would do that? I was hoping that he would work long enough on his place to get my daughter on his place. He is Transformer engineer. It is very good job with flexible hours and plenty of opportunities for innovation. It is marvelous job, but it is hard to crack for a woman so I thought my ex would teach my daughter everything he knows and together with college and university she would be set. Now he will not finish the job. We asked one of his friends to mentor her when she is older, but even though he agreed, he really doesn't know her and I don't know whether he will be so vested to transfer his knowledge to her.

As a fellow el. engineer, I give more credit to medical engineering than medical professionals. That being stated, get him a PSMA PET/CT full body scan before proceeding to any further step. It is the best technology on offer today.

Some useful info can be found here: ncbi.nlm.nih.gov/pmc/articl...

Choice125 profile image
Choice125 in reply to

I had a full body scan PEt before.They didn't find anything, so they decided to radiate prostate bed. Well, it didn't do sh*t.

in reply to Choice125

There is a number of PET scans that have vastly lower sensitivity regarding PCa.

Did he have a Ga68 or F18 _PSMA_ PET/CT ?

Under the PSA and doubling time that you quoted, if nothing lit up in a PSMA (repeat PSMA - not whatever PET) scan than this is very informative of his kind of PCa.

But, I am not qualified to give you more insight.

Choice125 profile image
Choice125 in reply to

All I know that he had the most advanced PET scan available. Had to go to the research facility in Montreal and "donate" 3000 dollars for it. They didn't find anything and thought that it is probably in prostate bed then.

in reply to Choice125

Sounds like he had the PSMA PET/CT.

What was his PSA count at the time he was scanned?

Has he got genomic testing ?

Choice125 profile image
Choice125 in reply to

it was about 0.45 No, he didn't have genomic testing

in reply to Choice125

So, more testing is due for finding the actual trouble maker.

Blind irradiation post prostatectomy and consequent biochemical relapse has a 50-50% success ratio (some even quote 40% success vs 60% failure). It is a try and error kind of procedure.

The same scheme can repeat with hormonal/chemo treatment. I.e. have some limited success at first and a fast decay afterwards. I have read stories here where people found what was really happening in them after exhausting -almost- every SoC treatment. Be smarter and make all efforts to find it now. A second "donation" to the Montreal facility and a thorough genomic test seem IMO in order. Good luck.

Choice125 profile image
Choice125

He us Canadian. And he is not my husband. So that would not work. Canada is notoriously slow on treatments. It is free, but slow and conservative.

Rae2004 profile image
Rae2004 in reply to Choice125

Please don`t go to Canada. It is too slow. Personally, I think that overall successful rate isn`t as good as that of USA . Good luck to you

You are Jewish ? I did not know .. 😂Gods chosen peeps. Shalom

Nal 🙏 Have a blessed Passover . Our best to Sweet Mary 😇

Dear lady, Getting the bad news is in every way fearful and horrible. The initial shock to the system can hit every emotion in bad ways. You are very interesting to me. Thanks for sharing your story . We do Care and we can relate . So stick with us . Ask questions and the fear will settle down a lot once you find out alittle bit more . It is possible for him to live decades beyond that dx. Many here including myself were given dismal stats of survival and have lived longer to prove them wrong. There is no sugar coating this hormonal pc . But with love anything is possible. After all he has you . Love is curing .. You must also take very good care of your own personal health. He needs you more than ever ., Keep hope alive , strengthens you bonds and go at this together ... I would not be here with out my wife’s love. She married me with tubes out of my kidneys and full blown stage #4 pc . I’ve been clear four years now, after 8 weeks of radiation and double hormone suppression drugs., non op. I recommend diet nutrition and daily exercise. Exercise is just about the only thing that everyone agrees upon to help Pc .. I feel that you can do a lot good stuff to help better his results . Depression is killer and terrible for our health. I ve had my share of that also . Please don’t say that you don’t want to wake up . ? I went through two years of suicidal ideations . A total waste of limited energies . ,Please dont you or he go.. there. . You will do what Bessarabia yo extend life for many years to come . We work hard to survive. We can not give up .. our lives are shortened . We must make the most of it . We are here today . I didn’t find this cute during my initial two years of craziness . Wish I had . I’m glad that you’ve found us . People in the know can answer any questions about pc and the life . Hold your head up high . Thank you for sharing . Please keep doing so .. welcome 🙏 Scott

Shooter1 profile image
Shooter1 in reply to

Good one Scott. We both had very dismal prognosis at the start of this war. Won every battle so far and looking at a long and productive life at this point.

in reply to Shooter1

Someone said .” The only thing worse than a young pessimist is an old optimist” I’m speaking for myself . You’re young at heart . Long long life isn’t in my future .. if i can etch out a few more years without brutal happenstances then it’s a win in my book . Its all gravy past dx. No promises made . Hope your healing well . Take care 😎🤙🏽

Shooter1 profile image
Shooter1 in reply to

Made it to 70 as of last week. In 60's and 70's never thought that could happen. Best of life to you too.

in reply to Shooter1

Any future plans of a visit back to az? If not we just might have venture moth next year .? Happy birthday . Are your shooting any?

Shooter1 profile image
Shooter1 in reply to

Don't know when we will be south, but have some beautiful country all around us and a spare room.

Doug

in reply to Shooter1

We don’t know either. We loved to see some you and the northland some day .. Take care 😷

Pulling the leg man . I’m proud to know you . 😎🙏

Engraver68 profile image
Engraver68

Hi

There is hope! I also failed surgery (10 years ago) and salvage radiation ( 8 years ago), I was then prescribed Bicalutamide first line hormone therapy

.

This lasted up to 2 years ago when it started to fail now on a 6 monthly injection of hormone plus a Zytiga daily.

I have lived to see and enjoy 8 grandchildren another on the way!

There is so much research into new medication and treatments that I hope to be here in 10 years from now, by which time as now I will have had a good life.

I celebrate my birthday next week 68 young with a great wife and family around me, what’s not to like and celebrate!

in reply to Engraver68

Happy birthday 🎈🎉🎊 Great inspiring words . Thanks

Lu177 profile image
Lu177

I have read this thread several times and I am still confused.

So - please tell me if this is correct:

You live in Canada which has 'Universal Healthcare'.

You are 45 years old.

Your 'Ex' is 69 years old and the poor bloke has PCa.

You rely on this poor bloke (who has PCa) for financial support.

("I really need him. Alive and working")

You state that this poor bloke, (with PCa), has not had any sperm for years and he is not your Husband.

("He us Canadian. And he is not my husband")

You wish to be artificially inseminated in Russia (presumably with some Russian frozen sperm donor) at age 45.

My advice would be to take a spoonful of cement and 'Toughen up Princess". You really need to consider the poor bloke who has PCa more than your own financial and ovarian ambitions.

marnieg46 profile image
marnieg46 in reply to Lu177

Lu177...

Thank you for seeking clarification on the many points in this post that I found puzzling...at first I thought the confusion was because of Choice having to express the situation in a language other than her first language but the more I read it over again the less certain I became. Some clarity about her situation would help those who want to support her provide her with informed advice.

My personal comment is that the PC journey for most men, if not all, is no picnic and those struggling with trying to making some sense of it and survive the journey with dignity and sanity intact need all the support they can get and also to be protected from unnecessary stress.

Choice125 profile image
Choice125 in reply to Lu177

My ex is hardly a "poor bloke". Not even close. When we met he lied his way into my life and tried to use me financially to support his family. It didn't work. I was 31 with my own ambitions for having my own children. His adult children are in their 40s and no grandkids. Or any kids in the family. not even cousins. His siblings are dead, either in the ground or emotionally. He went to other women who took a spoonful of cement like you advised. It is hard to live with no future and waiting to die with or without Psa. My daughter is actually all he has. He cannot stand his own kids for more than a couple of hours as not only they have no time for him, they have nothing to offer in terms of future. My "ovarian ambitions" resulted in my daughter after 12th IVF attempt in 4 counties and I went through hell and 250k to get what I have. My daughter is a blessing. she is smart, full of life, with inventive imagination and bright future. He lives for her. my mother lives for her and so do I. All my female friends are jealous as hell as she is way taller than their kids and good looking. The reason he has Psa in the first place, is because our relationship broke down as he searched for an easier life with other women. All they did, is clean him out even further and threw him out, as they had their own family. He was chasing easy opportunities and I sat at the fertility clinic. I didn't chase him to the doctor and he went too late. I had more money than him, I bought life with my money. And now he supports us, it is the least he can do.

in reply to Lu177

Thanks for pointing these things out. I also found this post to be very selfish. It's all about me, my life, my needs, my wants. I don't see a drop of empathy for the guy who has cancer in this post. Just about how it's going to hurt me when he can't work any more to support me and my ambitions to have another child.

It might help your depression to get out of yourself.

Choice125 profile image
Choice125 in reply to

I have way more empathy for him and I take care of him. I take him to the hospital at night to emergency several times, I make sure he has his meds and supplements and I do worry about him. You got to be kidding me though. He is my ex for a reason. He dumped me. He dumped me pregnant too. He was living with other women. I went pregnant to my moms to Israel and gave birth completely alone. He was living with other women. He lived with several women in a span of 5 years. The only reason he is living with me is because the other women got rid of him, each cleaning him out. He wised up. He would call me between the women and as soon as another "caring" would appear on the horizon, he would disappear again. If you think that caring means you are invited to move furniture, clean the gutters, come to the weddings, birthdays and graduations with money then you have missed the point.

DavidDundas profile image
DavidDundas

Hello, sorry to hear about your husband's problem; I have the same, except that I cannot have radiation therapy because of the unusual configuration of my bowel. My Gleeson score was 9 before I decided to have my prostate removed 18 months ago.

Your husband has 2 solutions: first stop the cancer that has escaped form growing fast with ADT (androgen depletion or deprevation therapy; I take Bicalutamide 150 mg once a day) and keep an eye on his PSA level; so far it is working for me.

Second is to get rid of it, for which a possible solution is Lutetium177 PSMA therapy which attaches this radioactive isotope to the Prostate Specific Membrane Antigen (PSMA) and then injected into the patient to go out a find the prostate cancer cells and kill them. This works for most men, but only if their cancer responds to the PSMA, so the first step is to have a Gallium68 PSMA PET scan that reveals the location of the prostate cancer cells; if this does not work then the Lutetium177 PSMA therapy won't work either. Both procedures are available around the world but the Lutetium177 therapy is expensive and requires an average of 4 treatments over several months at a total cost of around £50,000

A new treatment which is still in the research stage is CAR-T therapy, again using the PSMA which is attached to the patients T-cells (CAR = chimeric antigen receptor) using gene editing, so the CAR-T is then cultured in a lab and injected back into the patient. Problem with this technology fro prostate cancer is that at present it causes a cytokine storm (inflammation) that is life threatening and the research is into modifying the CAR-T so that this does not happen. CAR-T therapy is already used to treat acute lymphoblastic leukemia.

Hope this gives you and your husband hope. I am 79 years old and a retired scientist and engineer so I plan to live to at least 100 to be able to return my life experience back to society.

Choice125 profile image
Choice125 in reply to DavidDundas

I will talk with his oncologist about your solutions. The bad side of free healthcare as it is regulated and cheap. I hope his doctor has options.

Patrick-Turner profile image
Patrick-Turner

Hi Choice 125,

I would guess that it is unusual for a lady of 45 to want more children when their father is 69, but then my own father was born when his mother was 47, in 1912.

Many men have an RP and Psa rises after, and then they have EBRT or IMRT to radiate the whole volume of where the operation is, and Psa keeps rising. Pca could have spread to lymph nodes or elsewhere, and I suggest your man have a PsMa Ga68 PET/CT scan when Psa reaches about 4, when the scan will work well.

Meanwhile, he probably won't die within next 3 years unless he has unusually aggressive Pca. I did have a friend with Pca which killed him in 3 years, but his story is quite rare, and nothing the doctors did could slow down Pca progress for very long, and it mutated into something that caused liver failure, which caused his death. Its the only case I have heard of, and I have been here long enough to know Pca usually moves very slow.

The simplest way most men with Pca slow down progress of Pca is by ADT, drugs to stop a man producing testosterone.

After 2010, It worked for me for 6 years before I had another 2 drugs to keep Pca suppressed for another 14 months. The side effects for me were not severe, but in your case your ex may not like the other side effect of completely wrecking normal sex.

It took me about 4 years to become unable to have a normal erection as part of the erectile

tissue becomes full of fibroid tissue and Rodger resembles a brass garden tap, good for nothing, but with skin very fragile and no way of having any pleasure.

I have not been married since 1978 when a wife left because she got bored, or was frightened of the future; she never told all the reasons why she left.

Anyway, that taught me all about caution with ladies, and my sex life with a partner basically went dead at about 50 having a few flings with ladies who liked the sex, but had no intention to ever care about or for me for very long.

I was diagnosed at 62 in 2009, and had Gleason 9, in-operable, and doc could not say how long I had, and since then Psa has been up and down like a yo-yo and after ADT failed.

I had chemo which didn't work and then I had Lu177, and Psa was 25 when I started that in Nov 2018, and Psa went to 0.32 last Nov, but is rising again now, and might be 4.0, but I have no symptoms of the Pca, and I regularly cycle 200km a week on a bicycle at age 72.

I may have to get more Lu177. It is available in Sydney, and I live 300km away in Canberra, and maybe I can get a train ride but if they close down the train services due to C19, I'll just have to drive. More Lu177 might or might not work for me, but that can only be known after I have yet another PsMa scan, maybe my 7th so far, in about a month's time.

So, I have lasted longer than 10 years after a real bad diagnosis but with Psa only 6. I'd had regular Psa checks for 10 years. There could have been Pca spread before my diagnosis and the ADT may have suppressed them all along with Pca in PG, which I never had removed.

In my case, if I die soon, I'll not upset anyone, except a few friends. I am not a breadwinner now for a family, and I never ever was, but I have met ppl at chemo and seen a friend die who was a major life support man for his wife and children, and this is a complete disaster. The family these men left behind had to re-plan their life, and reduce any plans for so many things because they fell into poverty. In your case, your ex's ex "cleaned him out" and it amazes me that ppl still find a desire to partner and try to have kids.

But I can see you have some love for your ex, and much can be done to keep him alive, but there will be side effects you may not like.

Patrick Turner.

Choice125 profile image
Choice125 in reply to Patrick-Turner

I am very grateful for your reply. sometimes it is hard to even think straight. my ex sex life has stopped after he cheated on me, so that part of life has been dealt with. Unfortunately. As I replied to " jfoesq, " I just don't know what to do. I hope something comes up, a cure , a lottery...I am just kidding. Right now, borders closed, I cannot leave Canada. I was thinking that if I have embryos left after the treatment, maybe I can donate them to another older, childless couple, or a family who lost children to an accident or a murder in exchange to kind of having a surrogate family, even if we can visit from time to time as not to feel completely alone. I am thinking ... I have this opportunity, he will be working still, paying rent, and my daughter and I will be in Russia trying for another one. It takes at least 6 months to sit there and make sure I don't lose the pregnancy. I will never get another chance. It is much, much easier to find help for living, breathing children, then for fertility treatments at 45. Maybe it is a Gods way of giving this opportunity. In the morning I usually think I am completely nuts and I need to have a "talk" with my daughter that there wouldn't be a brother, because her Dada is sick , mama is old and we are too poor to take a chance.

Patrick-Turner profile image
Patrick-Turner in reply to Choice125

Hi Choice125,

I am probably somebody who is not very good at giving advice on personal problems which seem to be interwoven into your relationship with your ex. Ever since 1978 when I was 29, and married to a lass of 22 who just vamoosed late one night without saying goodbye, I vowed to keep life simple, and I did, and I learnt to enjoy the company of ladies, and it was up to them to prove to me a marriage might be worth it, but selfishness amoung all women I met was rampant in the 1980s days of feminism. Why on earth would I ever beg a lady to marry me if it could only make my life worse? - financially and emotionally ? So I never was able to gather the experience of how I got through personal troubles because I just didn't have many of them. So I can't offer you any personal guidance, but I have lived with Pca since maybe 2004, when I think my Pca began, but it did not make much Psa, so it remained untreated until 2009, and by that time the doctors thought it would kill me fast. But here I am 10 years later, quite alive.

There is NO CURE for Pca and the only fix for Pca is if a man has a successful RP which is early enough, and removes every bit of prostate gland tissue, and there is no spread.

Men who get a complete fix for Pca early enough often have ED and continence problems. An early fix might be RP where Psa < 3, Gleason score < 6, but with Gleason score of 9, and so much Pca outside capsule, I had to fight this disease for 10 years, at a huge cost to Medicare, and lot of my own money, and I have not one personal relationship which is affected by what I have had to do to stay alive. I was diagnosed in 2009 at age 62, and ADT suppressed my Pca progress. I happily retired in 2012 at 65 and got old age pension which paid much more than my electronics business, and I was so lucky to be alone in life.

Its been a windy cold day here, winter is coming soon.

I worked on something electronically interesting in my workshop, and it does not worry me I had no sons, daughters, or grand kids, and no wife to ease the pain of existence without anyone else. Your ex needs the best doctors he can afford, and probably he has to go on ADT, and later have Lu177 over coming years. He won't like any of that, but to stay alive its necessary, and where you fit in to all his coming troubles remains to be seen.

Patrick Turner

Choice125 profile image
Choice125 in reply to Patrick-Turner

As far as I know I was always the infertile mertile. It really defines me as a woman. I had to make sacrifices that defied logic. I had to go Russia across the Ocean to buy eggs, as in Canada it is prohibited and US prices are exuberantly expensive. I had to leave my career, and my husband (I had a husband) as he didn't want kids and didn't want to pay for fertility treatments. My boyfriend wanted to buy a house, I refused as I had to pay for fertility treatments, I couldn't give him money as I had fertility treatments... It took 10 years for me to get pregnant and 3 relationships, as fertility treatments always came first. I remember, when I finally got pregnant, I was still in Russia and I was jealous of other pregnant women. Infertility is not cancer but it sure makes your life pretty miserable and limited. It is its own sort of hell. You actually want to die. My ex wasn't really there for me when I was in the throws of all the tryings and miscarriages and sheer agony of it. He was living "his life" as he put it. He said it wasn't his choice to have kids that late in life. That I hijacked his life... He only now admitted , after more than a decade that when we were dating and living separately or even together, he was using me for sex and home cooked meals and going out, company...etc. Now he says my daughter is his reason for living. He has a decent relationship with my daughter and raises her as her own, but the betrayal will always stay there, just eats at me. Now I am 45. It is late, really late. He was always on the fence about his life decisions and commitment and that's why it came to the point now to go or not to go to Russia again for another one. I need at least 10 years to get 2 kids on their feet, as at least My oldest can drive my youngest to school. He will be more independent and out of diapers formula and all that fun stuff, learning more on his own...With cancer he will not be able to transfer his professional skills to my children. It saddens me the most. I am thinking I will do 2 transfers in Russia, and if it doesn't work, I will tell myself that I put up a good fight and close that chapter in my life. It is hard and life draining to live as an infertile woman always looking forward to another IVF try.

Patrick-Turner profile image
Patrick-Turner in reply to Choice125

Hi Choice125,

You have a heart rending story there, and you remind me of the time my two sisters went through their time to make babies. Before they did want kids, they said they never wanted any, but one began at 33 and had 3 sons, and 2 are now schizophrenic, one of the 3 is sort of OK, about 35 now, married a very good looking girl also 35, trying desperately to stay at 22, so she has a few mental bothers.

My other sister had many relationships, each man was never good enough, and she liked working, but got the urge at 40 to have a child so she married an ex pop music star who owed $100,000 to Taxation Dept, and was always broke. He was her choice for a "bag of semen to pay the bills" but he could not pay. She had one daughter at 42, and she can't talk to Mr Common Sense, aka myself, so as a result, I have very little contact with 3 nephews and none with my niece.

I married a GF when she was 21, and I was 28, and she said no to having kids, but after professing her love for 2 years she began to hate me, her mother, her job, and the city of Canberra so she left. I kept on going thinking that almost any woman I picked at random would be better than that ex wife.

I continued life here in Canberra and paid off the house loan and renovated the house and I saw no need to run around the world on some quest to "find myself" or find a wife. But this staying put in town meant I had to marry maybe someone also wanting to remain here and most were ruled by parents and because I was a builder, and not some posh office worker, all efforts to find a wife floundered.

But I was never keen to insist anyone marry me, they either wanted to, or didn't, and needed to be adult enough about it to ensure it was a team effort, a shared experience. Well, I sure did all the housework, and fixed up the house and no wife could be found; I sure didn't need a wife to be a maid, and nor did I accept a wife being a tyrannical queen of the humble house I had.

So many women insisted in their perceived feminist rights, and I insisted the practice those rights, but I wasn't the lazy man at home, and I didn't consider women as sex objects, et all, and I was not the type of man the feminists complained about. It did not help.

But usually, all rights anyone gets come with a duty of care. There's only one sort of marriage I ever could accept and it had to include fidelity and being happy in oneself while we both went about doing lots of things.

But so may I met hated housework, and wanted to roam about the world and score man after man, and I have lost track of them all because I am a symbol of permanence but to them I was so boring, because they were so restless. Marriage can be very dangerous for any man.

I was cautious by 30, and my mind ruled me, not my Rodger.

I had learned that a man cannot expect too much of anyone he meets for marriage or as a business partner, which I never had.

But since 1978, I soon woke up to benefits of having a humble life without building castles in the air or caving in to a woman who would have made my life hell.

I began to share my house with a long list of independent ppl which worked out quite well until 2014 when my fortunes changed and I didn't need the extra $$$ for share of expenses.

By this time, I was well into Pca progress after diagnosis in 2009, and I had bad knees and a bad ankle that allowed me to cycle, but not walk on sand, so no romantic walks along beaches were relevant.

There's not anyone in my life, and really, who would want an old diseased man who can't even have sex? Women, I have found, become allergic to men when their menopause happens at before 50.

They are often bitter and angry that their marriages have failed, and I met plenty like that, and I could never afford have them move in with the children from another man.

The point I make here is that life just does not ever seem to turn out perfectly for everyone, and only a minority of ppl have everything work just fine for work, money, and personal fulfillment.

Some women I met thought I was some sort of weirdo because I had never had kids, and wasn't a father, and once that was said on a phone to to my face, I either hung up, or just walked away.

In the 1980s, when I knew so many in their fertile years, I saw how so many made a big mess repeatedly, so much infidelity and bad habits went on and on, booze, smokes, cheating, laziness, and I had to ignore all those I saw as being their worst enemy because they just wanted so much that could really never be had.

So there's never been "anyone here for me" and I have been practicing self distancing between me and rest of world for most of last 40 years. I never cared that I could not have kids of my own, because the World seemed to already have far too many, and what on Earth was so special about my genes, or anyone else's?

For what you are trying to do, get pregnant at 45, methinks you really need a willing man your own age, who is 20 years away from getting Pca, and who may feel more inclined to support your plan to buy Russian eggs to overcome tour perceived fertility bother. Its a game of chance there, because you never know the egg quality. Its not so easy for any man to accept that much unknown stuff.

Have you ever thought that you'd find personal satisfaction without getting pregnant? Its a hard question I ask because women can feel such urges so strongly and any thought or alternative plan for life seems empty for them.

I understand how difficult it would be for a 69yo man to feel he could play the role of a 45 yo man, so to expect him to stay supportive of your dream and ambitions is probably asking too much of him, and Pca just makes the whole darn exercise seem impossible.

My neice's mother, my sister, had her marriage to pop muso fail after only 18 months, when he took to booze and ignored her sex desires. She lived in 9 different dwellings in 9 years, always wanting more than could be had.

But when niece was 16, she got ovarian cancer and died within 2 years. Her cancer journey made her much more tamed through that agony, and her ex was very helpful to their daughter, who fears getting Brca or Oa.

My older sister with 3 sons did get Brca,but survived now for 12 years, but she's 75, and to her sons she seems like a grandmother, not a mother.

So I can see that having children when you are 45 means you will be 60 when they are 20, and really, you should be 45, and better able to share youthful activities, and not troubled by diseases of old age.

My father's mother had my father at 47, but she soon died of Oa or Brca and so my dad was brought up largely without a mother, and by his sister and other relatives. None of those could tame my fathers fearful bad temper, and sending him to a conservative school where there were prefects and a culture of bullying helped at all.

I just like to spend my end time fiddling around with electronics in a shed, cycling as my body permits, chasing Pca fixes, and that's about it, there's no grand plans any more, just get to next week or next year OK, and with as many smiles and jokes with others as possible. At 72, I can quote Oscar Wilde, "life is too short to be too serious."

Its now warmed up this morning enough to get out for a cycle ride, and its a nice calm sunny day, and I'll eat a take away lunch under a shady tree somewhere, and that's close enough to heaven for me.

Patrick Turner.

Choice125 profile image
Choice125 in reply to Patrick-Turner

I was married for many years. My ex husband was a good provider, but he has Asperger syndrome and is an awful communicator and is just nasty all around. He can be emotionally abusive, is extremely passive-aggressive... the works. He was loyal thorough. I was too young and wasn't a good wife. I was trying to get education, in the wrong field that really didn't suit me. Then infertility hit and we went our separate ways. My ex boyfriend, on the other hand, can be nice, engaging, a decent listener, and usually a good natured man and pleasant to be around. But he is extremely bitter after his divorce, his financial losses in said divorce and he promptly too it out on me. I was trying very hard and loved him, but nothing mattered. I was wrong age, wrong stage, my bed was right though and my food and my presents and my time when entertaining, but right after after everything was wrong again. He was playing stupid games, playing me and his family members against each other, making sure he kept all the benefits, emotional, physical, financial from everybody , as they say, trying to keep everything under control by lying and manipulation. It was a horrendous roller coaster ride. I was working very demanding job and sitting in the clinics and having a long, (sometimes 2 hours one way) commute to work and just dealt with it the best I could. Then he asked me for my savings and I refused and then the hell broke loose. I woke up to the realization that I was there just to play a role in his life, but I wasn't really part of his life, we had nothing incommon, except his lies. but I was divorced and could not afford the time to search for another life partner. So I persevered with my treatments in various clinics and countries and he would pop up occasionally when women or relatives would as he put it "disappointed him" and profess his love, invite me to drop my fertility treatment and join him in his "happy ever after" and then promptly disappear again in the home of another "caring" woman or relative. When I finally got pregnant, he wasn't there and suddenly he was retired. The last woman that he was with sold her house right underneath him and send him on his way. I helped him to get back into work, we live together, but it took him years to get attached to my daughter and to actually care about her wellbeing. Me and his family don't communicate because of his stupid games and manipulations. I am too bitter to get together with them and I don't care. I have hundreds of building sets, a huge technical library and everybody else can just go to hell. I don't have a shed to tinker, but we so our tinkering on the study table. which I hoped to upgrade to the wider one from Ikea, and we will at some stage. I was hoping to get another kid, but I have doubts, and it will be difficult financially. I was hoping that now, that he is finally sitting promptly on his ass, that we can just live our lives, but now cancer casts this long shadow threatening to envelop our lives. I am too emotionally wiped out for romance or dating, after this yo-yo relationship.

Patrick-Turner profile image
Patrick-Turner in reply to Choice125

Hi Choice125,

It seems like life has had its big number of ups and downs and not all relationships yielded happiness. Life has always been like this for many ppl, our many entanglements with the opposite sex combined with failings and shortcomings of all concerned leave us all in a state of having PTSD from having lived a life.

So I learnt early after a short marriage to a lady who had no idea at all about marriage being the freedom to commit, freedom to WORK for a happier future for two ppl and maybe have kids.

The lady I married just was not mature enough at 21. But I saw many 21yo ladies were, and went on to have long happy married lives, and those many who can't do any of this have to leave, or be left, and costs are paid for that, $$$$, and change of life plans.

So I only ever needed someone who looked good enough, which meant plain would do, not fat, not thin, and who didn't have kids, and who didn't mind work, and was NOT a walking talking mental case. I would be thinking from day one, "Is this lady any good and how is she going to proove it ?" I could never spell it out, but romance was BS thinking and marriage has to be more pragmatic, and as a result after age 30, I dodged all the "leftover ladies" who didn't marry in their 20s, or whose lives were wrecked by a divorce and raising 2 kids alone, and I did not have finances to support another man's children.

So I have got to being old without the troubling history of personal entanglement that troubled so many around me. I'm probably the least able person to offer any advice to you to make you life better from now on, but I can only tell you what I've seen happen in others and in my own life, and maybe that leads to to finding your own way forward more happily, which I feel might involve you giving up future plans for pregnancy.

I am an old dude now 72, and I sure have met some attractive 40+ yo ladies, and that happened because they were travelling somewhat aimlessly around the world and just happened to stop for lunch and use their lap top at my local cafe. One was a born again Christian and supposed faith healer, and another was just unable to find the right man, and they spoke with me deeply enough, without WW3 breaking out, but they have drifted off to goodness knows where, and they can't settle down.

Of course I may meet a few like that here, and all I wish to be for them is a kind of friend, and exchange thoughts on how to exist.

I am settled, have lived in same house since 1976, and have seen the parade of passing ladies one after the other, they'd fall in love, then leave, as they must of known I really only like ladies who can commit for long term.

Why is it that I am The Only Stayer in my surrounding neighborhood who does not have to move around? I always thought someone would end up staying with me, from the local population, but none ever did, so, OK, I'll just be on my own and that's fine, and this idea has lasted since my young wife vamoosed.

There is now just so much I don't need to do or worry about and at 55 I jetisoned most ideas I had at 30, and after getting Pca, I jetisoned nearly all ideas I had before diagnosis at 62. Cancer did this to me because I needed to de-clutter my mind; for last 10 years I have thought I might be dead in a year.

All the times I went to a hospital or talked to a specialist, I went alone, and I an glad I don't need anyone.

This group is supposed to be for men sharing how they cope with Pca. Its our common problem, and remarkably, many have wives who have lasted a very long time with them, and I bet many of us men have given support to wives having problems like Brca or Oa. Maybe more than 1/2 population lives a family life with a partner, and those like me who don't will seem a bit strange, but somehow I handle the adversity of cancer without needing any special attention from anyone apart from the medical experts who have kept me alive for so many years.

When I do find myself in a hospital, and a nurse is nice to me, its the nearest thing to being happily married I will ever experience. So I don't mind being in hospital.

At 30, I'd never have said that, because I never needed to be in a hospital, I was far too healthy, and what kept me sane was to work hard getting my job done to please my clients, and that was never disturbed by what was NOT happening at home, ie, and ideal family life.

I also didn't booze up like so many other single men. I learnt to be athletic at 36, and I have cycled 247,000 km so far, just around here locally, and that's given me something that running around the world can't give. I didn't need to be a father, and have all that personal stuff that other ppl seemed to feel was necessary.

Try to look on the bright side,

Patrick Turner.

Choice125 profile image
Choice125 in reply to Patrick-Turner

Canada is eccentrically a country of immigrants. For many years the selection process that Canadian government established was heavily dependent on office type positions and entailed a population that are busy, snobby, cold, disinterested and aloof. There are way less job opportunities then in fact the country's immigration and educational institutions supply labour for, so everyone is mercilessly competing. It creates an enormous problem of people being disconnected form one another and everyone is clinging to their own "group" so to speak. I thought that me being lonely when I was young (though married) was because I was childless and once I have kids/kid, we all women would flock together with our kids and exchange information and drink coffee while our little progenies play together... Wrong. Everyone is extremely jealous, fiercely competitive and ambitions about their children and get togethers and playtime and any meaningful conversation is non-existent. Everyone's kids are overscheduled to death. So people's lives evolves around their kids activities. And god forbid if you don't want to take your kid to the same activity as your more affluent friends. I am not interested in the music, or swimming, or sports... we are mostly home, learning math and constructing and reading technical literature so I cannot relate to anybody. I don't have the money for overseas vocations, so that is out too. We don't have a country cabin or cottage that I can share. I am trying to raise my kid with what amazon and library can provide, namely books. It is not a conversation that anyone cares about. The people that don't have kids here are another category. They are protective of their free time and would not engage at any level because they think that they would not spend their free time on anyone's kid. It is a waste of time for them and they would rather play games on the computer and relax. Investing into somebody else's kids is considered a waste of their precious "me" time. They are also mostly white collar workers fighting to get ahead in their career. . We don't really have a bar/coffee/friends culture here. It dissipated about 10 years ago, but the advent of video games was probably the start of the destruction of the community as a whole. There is some sense of community in the Toronto downtown maybe, but overall, it is dead. I am living West of Toronto, 20 min drive and we do have 1 bar here, probably in 20 km radios and the only people who go there are non-functioning alcoholics. Even walking by the bar is unsavory as somebody always barfing right behind a corner. I lived in Toronto's Russian community center before, and it was a bit more engaging, with people gathering in the coffee shops (mostly retired). Most of my coffee friends from my college and marriage days have died. I live too far to drive to Russian area consistently to seek connections and I am presently stuck on the 7th floor of the highrise due to Virus as well. We have a huge technical library with plans to buy some more so I cannot say that we are bored, but it is hard to have a 7 year old as the only conversation participant. My ex has a nice,engineering, cushy job that he likes and we are disconnected due to past battles.

By the way, I have an update. We spoke to his doctor (over the phone due to Virus) and my ex would not receive any therapy at all at this time, Canada's free healthcare has it's downsides. It is highly standardized. There is such a thing called " standard of care". Everyone receives "standard of care". There are very, very few options outside the "standard of care" and you cannot even pay for it. That special early 3000 bucks scan he got was very hash hash scan that the doctor gave him referral to because we have a young child. Otherwise he would not have gotten even that. The doctor also confirmed that my ex has "Micro Metastatic Prostate Cancer". There are very few options for treating it. The whole thing is just emotionally taxing to live with.

Any Canadians here maybe? Does anyone knows if Canada does Lutetium 177 PSMA? My ex's doctor was not even talking about it...

Patrick-Turner profile image
Patrick-Turner in reply to Choice125

I read you loud and clear.

I was fortunate to have a dad who was a vet, not an office worker. He liked nature and the garden was always very untidy. My 2 sisters went to a posh school with catholic nuns, and I went to Christian Brother school, and none of us got molested. My dad's bad temper spoiled things a bit, but there were worse families I could have been in with parents who were neat freaks and always wanting us kids to be far better than we ever could be.

Mum stayed at home, a "kept woman" and she was fine, never too harsh about anything, and both my parents thought that as long as we were happy, that's all that mattered.

People joined banks or public service to get secure employment and find a marriage partner, and when the lady got pregnant she went home, career over, and spent her time on housework, child raising, dispute settling, and making curtains and fairly busy. Mum had piles of friends, and loved being at home and loved cooking for others and every week or two friends of family came to dine around our table.

Dad was elected mayor of local council for some years, and the parties grew bigger, lots of intellectual talking, rooms full of cigarette smoke, and empty wine bottles at 12:30am.

I got a good education at home on critical thinking, and at dinner around the table, if I said anything that was bullshit, Dad would chime in with "But Patrick, you don't realize these facts.... and went on to shut me up. " My sisters might get unstoppable giggles and be sent to their rooms.

My Dad died at 60 from melanoma he ignored. Mum lived to 98, died from old age, but at 80, she had at least 80 friends, and piles of Christmas cards. Shen spent most of her time between 50 and 90 on the phone, the old fashioned land line, or writing to ppl, and didn't need the Internet which she watched when it came, but she ignored it, and like me, saw that it didn't make anyone happier. She outlived all her friends.

She read books. unlike me she never kept a diary of personal flows and ebbs, she was too busy with friends. Dad had few friends, like most men of that generation but ppl liked him enough to vote him into council - he was a no frills doer.

Us 3 kids all had short marriages, and my sisters' career paths were uncertain, but not boring. I joined a building company which took on 70 carpenter apprentices in 1969. I went to being a foreman in 7 years.

I stayed for 15 years, then became a sole trader doing house extensions for nice married couples, so for a few months I was like a member of their happy family.

I worked hard, and had a house in Canberra all paid for by age 37. I was FREE.

Micro metastatic Pca is what all men get as Pca progresses, and when I had Lu177, it seemed it worked on small mets as well as bigger ones. Chemo was supposed to do that, but didn't. Systemic treatment is like this, it goes to every nook and cranny in a body and tries to kill Pca wherever it is found.

We have the same "standard treatment" here under our Medicare system, which means most of the expense of Pca treatments are paid for by Govt, ie, taxpayers, so everyone gets to have something no matter how poor they are. Rich ppl can go to a Public Hospital and get the same. But when standard care does not work, docs are allowed to refer you to Private Hospitals where costs are not funded by Medicare.

So I paid full price of many PsMa scans plus Lu177, and these have prolonged my life.

Nearly time I got onto my bicycle for a salad roll and coffee across town.

Its a nice day to sit by a small lake in sunshine to eat alone.

Patrick Turner.

jfoesq profile image
jfoesq

Nalakrats- I am approaching 8 years of

living with met PC with Gleason 9. Just curious where you got your OS estimates from.

Thx and Happy Pesach

jfoesq profile image
jfoesq

Thanks

Choice125 profile image
Choice125

I didn't know

paulcross4 profile image
paulcross4

I did salvage radiation 3 years ago and it didn't work either. I'm still here and life is pretty normal. I've been through a bunch of treatments and I have more to go. I work, I do my thing, I get up every day and enjoy it (even though there are bad ones). Keep going, one day at a time. Good luck

Break60 profile image
Break60

I went thru all that starting in 2013. I’ve had four recurrences since then, the last in 2018. He has plenty of treatment options. Don’t worry, Be happy! See my profile.

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