So angry and I decided to write my frustrations out and seek help from all of you. My husband sees Dr Oh at Mount Sinai. Did bone scan and CT scan friday. 5 docetaxel treatments to date but he had a PSA increase past 2x's (.5 and again 1.5.) Dr Oh suggested adding carboplatin for number 6. I asked about LU-177 but need PSMA scan to determine viability. Moving ahead with LU-177 clinical trial at Sinai this week. I called about test results and received them via email from his chart. CT chest, abdomen, pelvis says uptake in pelvic bones and L2 vertebral body consistent with metastatic disease. Says "larger and more extensive" Also, enlarged paratracheal lymph nodes more prominent than last scan. Bone scan says "mild interval increase in intensity of radio tracer uptake in left sacral ala, left acetabulum, left ischium, left femoral neck, representing progression of disease. THIS NEWS SUCKS HOWEVER, receiving this via email (yes I asked for results) but thought I would receive the courtesy of a call.... Wow, I emailed back and told nurse that it feels terrible to receive these results this way without an extensive conversation with Dr Oh. She emailed me back and said Dr Oh said to "cancel Wednesday appt with him, continue with Lu-177 trial if possible and we will cancel Mondays chemo as well......!!!!! Holy shit really......what if he does not qualify for LU-177??? Is this the end??? If so, is this how we find out?????? Received email back saying "if you would like to speak with Dr Oh we can set up a phone call but he is in clinic today and do not know if he can speak with you today" OH MY GOD I am struggling and have not had the conversation with my husband yet. Please I need help and direction. leaning on you all as I sit here trying NOT to be in a rage or become hysterical. Carol
SO ANGRY: RESULTS GIVEN VIA EMAIL...R... - Advanced Prostate...
SO ANGRY: RESULTS GIVEN VIA EMAIL...REALLY!!??
First of all, don't panic. The progression is slow so waiting to see if your husband is accepted in the trial is ok. I don't know this doctor but his response through his nurse via email is typical. Some of these doctors lack people skills.
I would ask to keep the previous appt to discuss the future what ifs. Good luck and hang in there.🍸🍸🤠
Thank you for your response. Much appreciated
Excellent advice IMHO. 👍👍👍
I agree that a phone call would have been a minimal courtesy.
But moving forward, I suggest you request both a PSMA and an FDG PET scan a day later:
pcnrv.blogspot.com/2019/12/...
I did read this article before and just read it again. God desperation has me reaching for any treatment he can have. I am going to ask Dr Drake and Dr Oh re: both scans. I wonder if being in a trial precludes him from having both scans?
I think if your doctor is changing your treatment plan, you deserve to at least be called and everything should be dicsussed, explained and your questions answered, etc. This is very poor customer service IMO.
I agree with Drphl1938 about trying to keep the appointment.
Stopping chemo might make sense if there is progression, but if the progression is slow it might be worth continuing. I would get a second opinion with someone who has time to explain things and answer your questions.
Yes for sure. Speaking with Dr Drake today at 4 pm. Thank you for taking the time to respond. God bless you
I am devastated for you and know how you feel having received news this way before. My experience has been most times it is because the medical people are WAY too busy BUT this is NO excuse. A simple phone call should have been made. PLEASE don't panic first of all. Of course, easier said than done. And I would be FURIOUS too.
Please follow the advise of these kind gentlemen.
Hang in there.
Many people on this site have been on the receiving end of thoughtless medical people.
Where has compassion and common sense gone?
Wishing you the very best and to your dear husband.
For sure. It feels like he IS too busy for us. Ugh. Thank you
When I was a patient of Dr. Morgans at Northwestern she would have a nurse call me before test results were released. I always appreciated the call. Too few doctors do that though.
I cannot operate like this. It feels awful. Thank You for taking the time in responding
My primary hospital group Northshore in north suburban Chicago will post your results in your account. There you have the opportunity to ask questions via text message through their Epic system. Epic seems to be popular around here.
I think your post shows you are a strong caring advocate for your husbands health and care. How good is that ! Like others here will tell you , you can relax a little ... this disease progresses slowly and there are currently many avenues of treatment. Others here might fill you in better about that. His report sounds busy and like a lot, and it is .... but some of us here are ever so much farther down that list than your husband and are still experiencing a decent QOL and possibly looking forward to a few more years as well. Try to cheer up a little , there are many positive possibilities ahead ... there are many brothers here that are proof positive of that.
Doctors can be quirky to say the least and it seems like you are receiving some great diagnostic information. You can successfully press for face to face for sure , much of my doctor contact is via phone calls to accommodate my condition and that works out well too.
Good for you and here’s thinking positive thoughts for you and your husband, a fellow brother on the group.
💪💪💪💪💪🌼🌸🌻👍👍👍
I know that I defend the medical troops, but yes, some are less than perfect. Not to make excuses, but the fact is these med staff work very long and hard hours, so please cut them some slack.
Would anyone on this site want to deal with people, ALL of whom will likely die, and soon, no matter how good the doc is ,not matter what treatment is bombed at their patients, it is in total, a horror story that should not be forgotten.
Go through a cancer hospital, i.e. spend a shift, then you might get an understanding of the incredible stress that us guys place on them.
I am as tough as nails, which is in part why I am still here but I could NOT ever work in a cancer facility, no matter how much money they paid me. The emotion toll is indescribable, so please, remember they are doing their best, often understaffed and without the best in equipment at times.
Also, remember, there is no rule that says that we have to hang on until we rot to let go, we can. have a choice of control over when we want to pull the plug, want to stop the pain and suffering that we go through.
Billy boy, I like the way you think. I am new to this PC club and intend to jump through the hoops currently recommended to me and see if the treatment can slow its progress so I can do a bit of travelling with my bride. I thought I had another 20 years or so but it may be a lot less. I hope the treatment does not become a quest and consumes all of my time and energy. If it does it does, I might as well check out. Get busy living or get busy dying me thinks, power to you Billy.. 😎
When I first started this journey, I would always enter the Dana Farber Cancer Institute through the second floor of the old building - the children's wing, The Jimmy Fund clinic. On purpose. Kinda kept me in perspective seeing those little kids pushing IV poles around while creating havoc on the wing. I could never work there, seeing those sick kids, knowing what I know now.
Thinking about that, I wrote this:
DOCTORS
Doctoring is a science,
And maybe even an art.
But it must be hard to shave away
Your emotions every day
Without sometimes knicking your heart.
Beautiful and true. Thank you
In my medical team at the local hospital in Canberra in Australia, the oncologist has had regular appointments with me going back to 2013, and he never emails anyone. He must consult person to person. But there's a prostate cancer nurse to help the hospital handle the 310+ Pca patients all at different levels of Pca progression. When I go to see the oncologist, I usually see a registra who is learning her work with cancer patients. She's the one who may read my emails with additional info about what may be happening to me between talks to the head oncologist. They like my emails because I get to the point fast.
The information about the status of Pca progression is usually in the report from radiologist and I can get to see that report if I want to. The oncologist is able to summarise the situation in a few sentences. He just has no time for long talks. He tells me the key info, such as "your Psa is now rising, was 0.32, now is 1.3, and so I want you to have CT scans to find out more. That happened last week. I had Lu177 last year, after scans showed I'd do well, and I did, and doc put me on Xtandi as well during Lu177 shots to make them more effective. But nobody could say why Psa is going up. Could be that Xtandi is not working any more, or that I have some Pca that is on the march again, and perhaps its not treatable by more Lu177, but then after the 2 scans I have on next thursday, a decision may be made to wait unto Psa moves a little higher, then have PsMa scan and maybe FDG. I mentioned the latter and also having tumor sample DNA analysed to see what will work best if Lu177 will not work again. There are so many variables to be considered, and there is time to get other doctors organised to do things. They all have other patients.
It would be silly of me to expect any miracle cure any time soon. I have had Pca since about 2004, but was diagnosed too late for RP in 2009. But my quality of life has been OK, and I cannot live forever.
I have no cause to be angry with doctors I have here in town and the docs giving me Lu177 knew what they were doing well.
I find that I often miss a lot of what is said at the appointments when 3 other ppl have spoken fast, and with quiet voices and I just have to keep asking them to repeat what they say, then hope I have got right what they want me to do. So I would not mind an email, but the oncologist needs to talk to me, to get answers and if anything is unclear I'll email the prostate cancer nurse, and she's very good at emailing back. I don't have a mobile phone. I talked to docs giving Lu177by Skype, because that saves me travelling at least 300km to just talk.
I do that with a lap top, good pair of headphones and microphone. That feels quite natural, and is like being with the doctor.
I have had a reports on what my Pca is doing over the years, but since 2009 I have managed to stop Psa going higher than 50, which it did for a couple of weeks during chemo which as deemed to have failed, which then allowed me to access Lu177. There were trials, but they were for Lu177 OR Cabazitaxel, and I didn't want more chemo so I purchased the Lu177 for usd $28,000.
I have had over a nice year after getting that. But overall Pca status and its effect on QOL can change rapidly with Psa doubling in a month. If Pca moves so fast and becomes untreatable with anything, the docs are not to blame, its just Nature taking its course, so I will just have to un-live. The future has been uncertain ever since I got diagnosed.
I wish you the best of luck, and hope that things improve for you and your husband. I don't have a wife or any family, so I handle the whole business of dealing with Pca myself. So there's nobody else to get upset about what happens to me.
Patrick Turner.
Patrick thank you for taking the time to write. I hear you. You have had a heck of a journey. And as you stated you are doing this alone. My heart hurts when I read this. I wish you hess as others and longevity. You are a warrior. 🙏
I come here to talk to others about the common problem that brings us together. I could never say I didn't talk about Pca enough, or that I bottled up the problem inside. Many men do, and quite a few women as well.
I dunno if I am a warrior, I just have become aware of most treatment options and possible outcomes, often before my oncologist mentions them. Fortunately, he and I think alike on the way my life is proceeding with Pca being a slow chronic illness. Panicking just does not get anyone anywhere, nor does making any assumptions, and all treatment is a gamble.
But today was a very nice summer day here, with beautiful cool morning, and I've managed to cycle 66km at good speed, and not having any aches or pains, so despite storm clouds on horizon, I have a very fine QOL, better than perhaps 5 billion other folks on our Dear Little Blue Planet.
I get scanned a lot tomorrow, maybe its like looking for needle in haystack, but My Team will see what they can see, and all will be well as it could be.
My Psa is not 13, or 130, or 1,300, its 1.3, so really, I am doing OK.
I am now going to cycle on to my local café for another splendid lunch and then spend an afternoon in my shed doing electronic work to help a friend better understand what he id trying to build. There are a few friendlies at the café, and I need that place as its a home away from home which is my quiet retreat from the Whirled, who you might realize is the mass of humans whirling around in space, with most hoping to make the best of their futures,
and they all have to take the slings and arrows but enjoy what they can.
Keep well, Love your man,
Patrick Turner.
Yes it certainly sounds like you are doing well and that warms my heart. I think I need to hear more of the good stuff like a PSA of 1.3 You are one of the lucky ones you know. No aches and pains, strength to cycle, friendships and a good attitude.
Best of EVERYTHING tomorrow...I will say a prayer for you Patrick Turner.
Carol
I graciously accept your offer of a prayer or two; it symbolises good will,
and I shall implore Nature to smile on you and your man.
In 2018, I did have beginning of bone pains when bone mets began to get big enough to cause some pain. But it was never very bad pain, and I didn't need pain killers for it and my cycling seemed to reduce it. Chemo reduced pain a little, but new bone mets were seen in scan after 5 shots of chemo. I used to cycle 17km across town to get the chemo, and then cycle home a longer way, and I had dexamethasone with the chemo so I was a bit high, and able to overtake ppl cycling home from work. Oh what fun. But the week after chemo was awful, and 5km a day was plenty, then I'd build up distance and be able to get to hospital by bike again.
There are several ways to extend your life expectancy and I am doing them all, so maybe I get more time than if I moped around at home doing nothing and getting very unfit. Lu177 had virtually no side effects other than getting intermittent dry mouth when sleeping or going hard on bike. This seems to be able to be eased by massaging the areas of each lower side of face under / around lower jaw. My body does not like cycling in severe heat, and we have had days when I was caught out in 36C, but some days have been over 40C, and even the early mornings were hot and humid, and even on the bike with a breeze it was impossible to stay cool and feel well, and possibly that is due to 2 reasons, being 72, and taking Xtandi. I did have Zytiga for 8 months, and that made my heart rate become irregular with T over 27C. Zytiga interferes with adrenal gland, which makes a lot of chemicals to regulate things in the body including the heart, so its a wonder I survived being able to cycle while on Zytiga.
Part of me insists I live as a frugal athlete, and my judgement power insists that's better than living any other way. I spend a lot of time on my laptop typing to others and preparing website pages for my website, so I have a balance of intellectual and physical challenges. And its all without the stress of dealing with "difficult people", those who some how I managed to avoid without trying. I regret not having had any kids because that does involve deep caring for others, and that life is not all about how we feel, its as much about how they feel, and of course putting this into practice when I was young was easier said than done I found.
Anyway, Wonderment and a Sense of Humour is about all that makes life worth while. I don't want more than can be had from others.
Now if Jesus returns to save us again, I'll meet him and whisk him away from the airport before our Border Force interrogates him and decides he's crazy, like all the other ppl who claim to be Jesus at some time in their lives. I'd teach him how to get by without a full set of papers, and explain why having a certificate from Heaven saying who he is won't convince staff at immigration Dept, or at hospitals. But because I was a carpenter for 28 years of life, I have a full set of tools, so I can teach J how to use the electric ones, and I have a few jobs around the house for him. I won't charge rent. Of course its always possible that Jesus The Man won't return, and that Heaven may instead send Jesine, a lovely lady who has marvellous powers of friendly persuasion to get us to live better lives, and limit our darkness of angers.
I would not be able to get up to any hank-panky with Jesine because I've been totally neutered by medical procedures, but we could hold hands and just be happy maybe. 
!! I think the Whirled could do with about 100 Jesines, or maybe 10,000. And of course all this is in my imagination, which I refuse to limit in its capability of considering an alternative existence.
I must away to my shed to work on something real, all the best Carol,
Patrick Turner.
Hi Patrick
Wondering how you made out this week? You mentioned there were scans to be done on Thursday....hoping for good news for you
Carol
Last Thursday I had a CT scan of thorax - pelvic area with contrast agent injection, and then full body CT bone scan, with some other agent, iodine I recall. My doc would have it now, but next follow up meeting is not for another 7 weeks. But I will email the prostate cancer nurse, and tell her I had the scans, and not to hesitate to email me if my oncologist sees a reason to talk to me sooner. They don't mind me letting them know how I am going.
This last week I have spent a fair old time emailing this group, and composing web pages for my website about electronics. I cycled 180km so far this week, and may do a few km today but roads are wet from a little rain. Maybe I'll cycle 40km after lunch.
Much has fallen where bushfires were still burning and put them out, but here the rain has been far less than they forecast.
The nation suffered from the fires, 33 died, 3,000 homes lost, ppl got depressed and angry with climate change and politicians, and hot days.
But huge bushfires and long droughts have been part of Oz history for thousands of years, and if ppl live near the bush they can pay a big price.
Maybe the drought of last 3 years is breaking, good news.
I'm just cruising through another day.
I have no idea what my doc will find, but Psa is only about 1.5 now, and I am rather healthy now, so I feel no panic, or need to have some additional treatment immediately, mainly because nobody really knows why Psa is rising fast again. There's a good chance my Pca will grow back up like a weed, as it often does after taking a hit from some treatment that cuts it low. It is possible I will have more Lu177, and research at Peter Mac in Melbourne last year by a Dr Hoffman indicates that repeating Lu177 treatment can be a good option for men who initially get good response followed by Pca re-growth if the Pca shows PsMa expression and hence high Specific Uptake Value, SUV, for the Ga68 in PsMa scan, and thus for Lu177. Theranostics Australia are there if I need them, and are becoming wiser with experience with hundreds of cases of Pca, and with recent research. So even if my Pca keeps growing back up, I could have repeat doses of LU177 and stay alive for a lot longer. But things get complicated if docs find Pca tumours that cannot be seen in PsMa scans, or were never seen in previous Psma scans. I understand the reason for present uncertainty, so there's no use being upset about anything yet.
Patrick Turner.
You have such a great attitude Patrick. You had scans but do not panic on the “wait”. God Bless You.
LU 177 may be my husbands next step. Mt Sinai has a study going on. Now to see if V’s tumors emit PSMA. That’s next week. 🙏it sounds like you have minimal side effects from
LU 177?
Yes indeed I have had minimal side effects from Lu177. Occasional dry mouth, if I sleep laying on my back, or go hard in the bicycle. Right now I have no problem at all. Patience about scans is a very necessary thing, and I might spare a prayer for you and for God, because in your world, God works hard to dole out the favours so someone should pray for Him, because He must get a million requests each minute of a day. However, I am a believer in Nature, a type of supreme being who has no human characteristics and I have trouble wondering why myself, the Universe and Eternity and Infinity exist, even though many old books have been written to explain why. Despite my lack of understanding of what is so much greater than myself, I found plenty of reason to work to make others happy, and work to make women happy where possible, and maybe I'd be happy as a result, and sleep like a log at night.
I found trying to understand theological explanations of spirituality was impossible, and the better thing was to just get on with hard work, and being a nice man when required. I don't think I am an atheist, because to believe I am involves abandoning all beliefs in many possible things that could be beyond our ability of knowledge.
As a child I was taught in Catholic schools, forced to learn the Catechism, a little green book which I ended up thinking was a form of brainwashing.
My mother once had to learn from the same book in about 1929 and book said "who made the World?" the book's answer was "God made the World. But mum asked her nun teacher "who made God?" and the teacher bashed her with a stout ruler. "How dare you argue with the truth" was the attitude of many. But later in life, during my childhood, she became more devout, but then as I became teenage with my 2 sisters she became more "progressive" ie, liberal, and after reading many authors of the 60s and 70s who had been or still were priests in Catholic Church, she became completely uncertain about the Church. But she'd still say "God bless you" and we knew she approved or loved what we were doing. If I could please her, I could please anyone.
Both my parents stopped church attendance, they'd found their way to independence, I feel both had a good feeling about Jesus Christ, but like me they could not accept Theology and the Pope and all that complex stuff that was impossible to believe was true. So I remain honoured by anyone offering prayer because its their way of wishing someone well, and I just can't be angry about this. I would have easily married someone who had not "lost the Faith" like I seemed to, but because I'd lost it, I had not become a Bad Man.
And what on Earth did ppl do before the ideas of God and prayer evolve? say 20,000 years ago? If a man hunted, he'd share what he killed with his tribe, if a woman found edibles so would she, they would care about their young, their old, but not without some sin, its inherently human to sin, and not be perfect.
Somehow or other the human race has survived to the present, and it wasn't all due to God. It was the triumph of goodness over evil. That was largely a very long God-free event of evolution. The truth about Jesus is
not all well known, but He did give us some good ideas. What if instead of Jesus, there had been a female child born, Jesine of Nazareth, with amazing ideas on morality? We could do with at least 10,000 of them now.
Just my Sunday Thorts. Please pardon my interlude into religious ideas.
Rain has quenched the fires here, maybe the drought is breaking. You might say "God be praised" and I might say "Ah, wondrous Nature at work". Its all OK.
Patrick Turner.
Well said....a lot to think about it. And yes it is all ok I enjoy your writing. thank you!
I have a question; my husband may be entering a DOSING trial of LU 177. Do you know the dose that is working for you currently?
I think I had 6.5 micrograms for first 2 infusions and 7.5 for 3rd, then 6.25 for 4th. Its figured out by the doctor supervising administration, based on patient weight, and SUV found in scans. Having more or less would not always be a good thing. Dose levels are something docs now know a lot about.
I had last Lu177 shot last May 2019, so its action has probably faded to zero. Lu177 has a short half life of radioactivity lasting only days, so most of its effects are over after a month. The body then tries to clear away dead bone or dead soft tissue, and met is much reduced in size, but still there, and active. The next shot of Lu177 is able to go to met and reduce it more, so little by little the bone mets are reduced and to very small size or eliminated entirely. Soft tissue mets are more quickly reduced to be invisible in later scans at a faster rate than the bone mets.
But my Psa is now rising from the low 0.32 I had last November, and docs cannot yet say why. I have a lot more treatments to get on with in future, but I don't know what they might be yet.
Lu177 is like an army of old warriors attacking a besieged castle. They gather at the base of the castle walls, and dig underneath, they bombard the walls with catapults hurling big rocks, and slowly the castle collapses, and the enemy ppl in the castle are doomed. It used to take months, until gun-powder was used, a handy invention by the Chinese.
Patrick Turner.
Thank you Patrick. Love the description!
What might work against Pca would be some bone marrow grown in a lab after taking a sample from Germaine Greer, one of Australia's most tardy and disagreeable feminists the world has ever had to cope with.
After putting a bit of GG's bone marrow into a man, I reckon the Pca would be very rapidly all killed in about 1 weekend. Side effects would be that other male features could be modified, and men then changed into what seem to be grumpy old women.
Seriously though, there are limits to how much radiation can be used against any cancer because at a certain point it can provoke the start of Leukemia, or damage kidneys, liver.
So far, Immune Therapy has not become available here in Oz because its efficacy is so low, and cost of Provenge is astronomical.
But some men get many years of Pca control because the altered white cells reproduce after Provenge therapy and continue to kill the man's Pca.
But Provenge has mean benefit time of 4 months, so it seems many men get it, but their white cells don't reproduce with the cancer fighting capability. I know men who say they'll never get cancer because their immune system is so good, and Its no good arguing with them, because nobody's IS is perfect, and the reason why cancer grows in uncontrolled manner is because IS does not recognize cancer as rogue cells. In fact, maybe IS sees the cancer as a friendly lot of cells, our own cells, and if anything tries to kill these cells the IS may try to protect them. Just my naïve my suspicion. But lots of research is being done to get an IS based therapy to work better than Provenge, but nothing yet has turned up here to be available at treatment worth trying.
In one case of a neighbour who died of lung cancer last year, he said he had Immune therapy at a local hospital, but I think it was only just having booster drug to increase the number of white cells, and he'd been through chemo, so he had more white cells, but his IS still did not attack the cancer, and could not, unless the its DNA had been altered to see the cancer. Side effects of IT can be awful, IS attacks the wrong thing, its not yet perfect science at all, the body is just too complex.
So I am stuck with maybe more Lu177, or PARP and nobody can predict how much longer those might hold off the day when I have to surrender to Nature, and go onto palliative care.
Patrick Turner.
Patrick, I was wondering if there are any support groups in your area that you could got to for a chat and a cuppa?
Yes, there has been a local group here for maybe last 10 years, but they won't establish an online chat group like this one and they have monthly meetings at night about 25km across town. They do have coffee at a venue slightly closer at 10am on a Tuesday and maybe 5 turn up on a good day, but my regular cycle days has been Tuesday, Thursday, Sunday, for many years, and not one of the group cycles seriously, and when I did attend a few night meetings it was hierarchical and most were older and I just did no need their support; all got plenty of that from their families, which I don't have, and despite my age at 72, I do like the freedom of online discussions more than the stultified atmosphere of what was like a public servant executive meeting, because many had jobs in the Australian Government Public Service, because this place is the National Capitol, with population of 440,000 ppl. So I came away feeling sad that I went to meet them, and I know that makes no sense, but I am human, and I always preferred the wider big bigger world of Internet where far more ppl are drawn together to discuss things.
There is a Melbourne based chat group, 800km away, and that does have an online group, but weeks can go by without anyone posting anything, and if I reply then maybe that's it, no ongoing discussion. I think many in that group can't type, or discuss anything personal at a deep level at all, and keep their troubles to themselves, and maybe their doctor, and maybe missus, who they don't like to upset with details of medical problems. I grew up in a family where we did talk a lot about much over dinner, and my friends in my youth talked further, much about sex, politics, religion, and money, which are forbidden subjects in many ppl's minds as they grow older.
maybe 18 months ago a friend in Melbourne said I might join this group, and I have no regrets. He was 58, but died last year, from runaway Pca that defeated all the doctors could do. His response to all their treatments was very bad, and he lasted only 3 years after diagnosis.
I basically have no female friends because after a certain age, women just become allergic to men, and the company of men and at my local cafe there are often gatherings of women and they are men free, and they would not like me joining them. There's rarely any group of men. I used to cycle on a Sunday with groups, maybe 25 ppl, sometimes there were women who joined in, but they were a minority, and if there were two, they'd be together at the coffee stop, so enjoying female company is extremely rare for me, and its as if I live in a dystopian world where females don't exist. It wasn't always like this because at 30, I'd go out to discos and dance, and women were pleased to see me, and maybe go a lot further, but then I found casual sex led nowhere, as I liked loyalty, but with that comes the solitude of being faithful, and I found no woman to be capable of that. They insisted on their right to variety while young, especially after they'd separated or been divorced. So I learned to live most of my adult years without much to do with women who were single.
I often worked for married couples wanting their houses extended and they were all a pleasure to work for.
I was able to work alone on many jobs, occasionally hiring a man to help, or a sub-contractor. I worked alone for 18 years after leaving the construction industry. I am able to go weeks without talking to anyone.
I have got to old age without getting depressed, and without my brain falling out.
Patrick Turner.
Hi PT, sounds like you're comfortable in your own skin and happy in your own company. I like the solitude of being alone too but am lucky to have a wife who is independent and happy to do her own thing. I am mindful of getting under her feet and that ensures I continue to get out and about much as I use to.
I am getting over the initial shock of of being diagnosed with advance PC and still can't believe it's happening to me at 58 years of age. I'm trying not let it consume the diolog at home and work but it has become such a time consuming event that it's never far from my thoughts.
My current intention is to continue my treatments and stop work when I turn 60 as planned. I use to say we'd run out of time before we run out of money. I wonder now how much time I have now. Probably time than I think so I'm trying not to throw the baby out with the bath water.
I like your attitude PT and it's good to see some rain, cheers 😎
If you are 58, still married, and done most things that needed togetherness in purpose, and you both love each other then you may have achieved what most ppl find satisfies them. I am also aware that many ppl posting here are wealthy enough to cope with the US medical system ands insurance companies who work hard to part a patient from his money. There would be many who can hardly pay for anything, so they die prematurely.
But we have Medicare that gives the basic care if you are sick no matter how rich you are, you go in, you get treated, and not one cent is spent. which surely makes it easier for a patient and their family.
Men and women who are still married after say 20 years are very lucky if they can be independent, autonomous, and this I found necessary when I worked in the construction business and later in electronics. Inter-dependence was touted best solution for most couples, because total dependence on a partner was unhealthy, could lead to hostility.
When I was diagnosed too late at 62, also wasn't pleased, but I thought it could happen, my family history had many cancer cases. But although the initial diagnosis was bad, and although I felt I might die in a year's time, I am still here.
All you can do is learn all you can about Pca, and try to pick the best available treatment. Maybe each treatment or chemical they use gives limited time to delay Pca progress, but not cure it. This is what we hope for, but its very very rare for any man to get remission if his Pca has spread at the time of his initial treatment, and scans often don't show microscopic sized mets that are there. From little things, big things grow, and that's unfortunate, but when may mets are seen in scans then systemic treatment is needed. But I found chemo failed, but Lu177 seemed to work, and Psa went from 25 to 0.32 in 12 months, but now its rising again, so I have to get more treatment. Docs are not sure what may be best yet.
It rained this am, I got to lunch, it stopped raining. I went for 2 hour ride, then it rained again, real light rain, so I remained dry, but got total of 211km on my bike for the week. That'll do fine. It was real windy, and on one part I battled into 30kph headwind at 13kph, and a young man zipped past me at 23kph, made me miss being 25 for about a minute. Where would he be when he is 72? I never see many my age out on a bike.
Patrick Turner.
PT, you sound like a legend, keep riding. I ride too, but my bike has a V twin engine 😎 He He.......
I built a "Bitsa Harley" at age 20. 1,200cc side valve bottom end with Norton barrels, Matchless G80 alloy heads, OHV, 4 speed gearbox with hand operated gear lever on tank, hand made, Matchless oil pump, oil tank hand made, Honda 450 alternator, much modified Duo Glide HD frame from 1958, girder forks from pre WW2, and Morris car shock absorber on front, Norton front wheel, Matchless back wheel, and I made exhausts and inlet tubes, and copper oil lines, and all electrics.
I had Ford car pistons. I got it registered without needing an engineer's certificate, because the man at motor registry assumed it was a rare imported model. Well, it was. All the parts had been made OS.
The thing went like "shower of shit" up hills at low RPM and scared me at over 90MPH because it got wobbles due to front fork limitations. It lasted 2 years, and I had a side car for awhile. Had to convert back to side valve because car type gudgeon pins came loosed in con rods.
Much fun though.
I sold it because it ate all my time fixing things, and I had begun to study at night course to get a Building Certificate. I saved money and then bought a used BMW-75/5 which needed almost no attention for 10 years.
That seemed to attract a better class of woman prepared to go out with me.
I quit motorcycles in 1981, and began my own building business, I bought a push bike in '82 to spruce up my fitness. In '86, I joined the local cycling club and raced for 6 years as a veteran. I have enjoyed 2 wheels.
In 1992, I sometimes cycled 300km in long summer days.
Patrick Turner.
All, absolutely all the oncology doctors we have consulted have either not given explanations or have been rude and insulting. More than once my husband has left the office saying that he did not want to continue when a doctor had previously told him "you know what you have" by giving him a death sentence regardless of the patient's psychological state. Throughout this process I have bit my tongue without saying anything when I should denounce doctors for the lack of humanity. They excuse themselves that they have many patients, but we are people, not statistics. Keep calm, fight and see where you have to go until you are sure that you have closed all the doors. Many moods.
Thank you Rilu Much appreciated I will stay open to anything
I have an agreement with my oncologist. I get all my scans 1 or two days before a scheduled face to face appointment. We are in Kaiser which uses Epic and have agreed that the system will not release the results before I see him face to face.
Partly, it is because I am a physician and in the beginning of the met journey I was only reading negative things and partly it is because he is a compassionate practitioner who can even shed a tear with a family.
Once we have discussed results and treatment thoroughly the scans are released and I can read them without the uncertainty of knowing what the technical stuff is about.
I can't imagine getting results any other way. I put my life literally in his hands and I want answers in a dialogue along with my support system (wife and physician daughter) present.
You better believe it. I like the idea of scans just before appointment face to face. Thank you and god bless you
It’s understandable to be upset and angry. I’ve been in situation where I couldn’t even get an email.
If you haven’t already , getting a genetic test, ie, liquid biopsy , getting the Guardant360 or equivalent might give you some more detail, as to the structure of the Pca mutations you are dealing with.
I have been on both sides of your problem. It is nerve-racking not knowing what is going on and having to wait for any news. Then getting the test results and not knowing what they mean. I've made plenty of calls only to get a nurse or tech that knows nothing of my situation. However, I have gotten calls on my test the next day if not the same day, telling me we need to do something. When this happens, bad things have happened to me. To tell the truth, I don't want to hear from them anymore. To have priority at a cancer center means you are in trouble. Think of it this way, the police never come to your house to give you good news.
I have wondered how impotent they must feel with all their knowledge, technology, and experience to have to listen to the screams of their patients and their families to do something. Only to see their lifeline is too short to save them. To have to watch good people fade away.
I have had my fair share of bad medical personnel. These people should not be dealing with any living thing. But there are many more people who have made this nightmare bearable. Find a doctor that will give you what you need. More times than not they will tell you the same thing but in a better way. You are not alone. Live for today.
Thank you. Live for today 😊🙏
Makes me even more thankful that I was fortunate enough to have Dr. Myers and my current Doc at CU Anschutz. Both spend as much time as I had available to go over tests and options. I did have a radiation oncologist with no bedside manner and a reluctance to share information, even when changing the parameters of my treatment, so I have some sympathy for your situation. It really helps your husband to have such a strong advocate.
Read his book. Highlighted most of it! Learned so much about this sucky disease. Wish he were here. Thank you for responding 😍
After bone scans/CT scans I would get nothing from doctor, not even an email. I have learned to download and read them the next day. I probably read them before the doctor glances at them. Seems strange that doctor wears high heels to work. Mentioned that to a nurse and she said all the female doctors wore high heels. Fleeting glimpses also showed, that under her hospital smock, she was dressed to the 9's. Dinner with candles? Party every day? I thank everyone, hitch up my jeans, and go in search of a sandwich in my comfortable sandals.
Oh forget it.....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 02/04/2020 9:07 PM EST
High tech medicine has lost much of its bedside manner. Totally in humane .. they need better patients skills. Most of us here have some kind of similar story . However , Being mad only hurts you .... Keep advocating for him.....my opinion is that it’s a cold system .. I pray that you find his pathway for healing.. 🙏
Thank you Whimpy-p Bless you C
Right back at you !😎
With the youth of today it will all be text messaging from here on out . Take care
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