Sometimes You Just Can’t Get Away Fro... - Advanced Prostate...

Advanced Prostate Cancer

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Sometimes You Just Can’t Get Away From It.

Hex40 profile image
85 Replies

I was diagnosed last April and for me it’s been an emotional roller coaster. As of now my diagnosis is only known to the immediate family. In spite of ADT I’ve tolerated it very well by exercising and altering my diet. Unless you knew of my diagnosis I pretty much look and act the same. Last week we were invited out for dinner by a neighbor and my wife and I thought this would be a nice break to get my mind off of things. We enjoy good food and conversation. At the conclusion of dinner the neighbor started to talk about a friend he recently lost to prostate cancer and went into extreme detail regarding his last days. I was mortified and tried to keep my composure at the table. Going home with them I was silent. Needless to say when we got home I was a wreck and I hardly slept that night. I know my neighbor has no clue about my current condition but I just hate hearing the stories of the suffering of others.

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Hex40 profile image
Hex40
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85 Replies
FCoffey profile image
FCoffey

I hear you. For some months after my diagnosis when a cashier or acquaintance asked me "How are you today?" what flashed through my mind was "I have prostate cancer, how are you?"

I never actually said that, it would have been mean and rude.

It gets better over time. For me, coming to terms with treating this as a chronic disease to be managed rather than an acute illness to be cured at any cost has helped a lot. Over the years I've confided in more and more people. There comes a point where it is too much hassle to remember who you've told and who you haven't.

I'm literally in the best health of my life, because of this disease. Diet, regular exercise, stress control, and just appreciating how precious life is and knowing that no one knows how long they have. I feel great and everyone who learns is shocked because I look so healthy and strong. That's because I am.

The suffering stories are especially tough. FWIW, a friend was recently with her quite elderly father when he passed from prostate cancer. She said he was peaceful and serene. He took morphine for 2 days before he died. He was lucid to the end. So it doesn't always end badly.

It does get better, but every now and then something will fly in without warning and sucker punch me. I tell myself that at least I'm around to take the shot, better than the alternative.

Good luck to you!

greatjohn profile image
greatjohn

there is the other side of the coin. I have jumped in the fire(Advanced, aggressive & castrate resistant prostate cancer from the skillet (prostate cancer) rather quickly (app 2 years from 1st early diagnosis-gleason 6)...That said..my partner is not good at fielding questions...So ASSUMING I would start NOT looking so great after radiation...after chemo...after Provenge...and would have marks on my arms making me look like a heroin addict...I decided to go PUBLIC...fast. To keep him from having people ask..."is John okay?" etc.

** Also ...I figure someone might have something to share with me that could help..or I might be able to help someone. I put it on Facebook from the beginning and kept no secrets. I have helped some people who would have never admitted they had it...but because I did...came to me for advise and consolation. One person in A BIG WAY...

** Plus, I'm figuring I'll show them the "new face" of prostate cancer...like women tout their breast cancer...OUT and PROUD. Everyone's different...but until more people know that this is affecting a lot more people (than I thought it was)....it's always going to be on "the back of the burner" as a medical priority. Not everyone is comfortable "putting it out there"....but I'm glad I did. I will say you will NOT make new friends when the people you meet know you have a "shortened expiration date"....they just don't seem to want to bother and they want to avoid..."the ugliness". So there are "pros" and "Cons"

Filotimo62 profile image
Filotimo62 in reply togreatjohn

I agree greatjohn. Yesterday we had a prostate removal party for my partner (he is having surgery this Tuesday). We had it at a friends brewery with lots of pizza, beer, wine and dumb jokes. I made him a chocolate cake with little chocolate penis's and prostates on it and I wrote a poem. All our friends are booked in for prostate examinations and three of our neighbours have had prostate cancer and surgery etc. As 1 in 6-9 men get it, its very common and needs to be talked about more. The diagnosis freaked us out but with all the great support we are having it has made life easier. Laughter (and exercise) is always the best medicine. And I agree - treating it as a chronic condition that needs to be managed is a better way to go.

Vindog29 profile image
Vindog29 in reply togreatjohn

Wonderful wonderful honest from your heart to my heart response...how I live my life appreciate how you are living yours

mickeypb profile image
mickeypb in reply togreatjohn

I have made some great friends after I joined our local support group. And I like to think I help more people in the group than help me.

MJCA profile image
MJCA in reply togreatjohn

Us gay boys have another level regarding this disease. If we can come out, admitting you have prostate cancer is easy. I am selective in who I tell. But I do let those close to me know. We all have stories. At the check out at the market - do I want to give to Brand X cancer? My reply, I’m already giving! Don’t be afraid to let some people in.

HonuHonu profile image
HonuHonu in reply toMJCA

I’m gay too. My hubby has pca. I don’t see the parallel of coming out as gay and acknowledging cancer. He has always been very private and comes from a very private family. I’m open and don’t keep secrets. And we are both gay. Go figure.

in reply toHonuHonu

Each of us unique. ...Mahalo

in reply toMJCA

Already giving... I like it...

BarronS profile image
BarronS

After maybe a hundred hours of research and reading even more dozens of hours of posts on here, I can firmly say that one guys experience is not going to be the next guys experience - both in disease course and end of life.

60

Some people have lots of pain, others have none. Some end up having a heart attack while others live 10 to 15 years.

The good news is that we are in a golden era of advanced prostate cancer treatment. A study just came out of Sweden that had almost 60 percent of their metastatic patients living for 5 years. Pain palliation at end of life is also improving. End of life is never a "good" thing, but you are going to hold on to the worst case scenario and apply it to yourself, you shouldn't do it.

It sound like you are doing great and still very mobile. That's great news. You have many more years left. I know it's very difficult, but don't be worried about the last few days when you have so much more left to live.

Crabcrushe profile image
Crabcrushe

To me, self-pity is an avoidable disease. They put me on hydrocodone for bone pain, and I kicked ASAP; started to get some "woe is me, sniff" notions. Went away with the withdrawal. Self-pity is counter-productive as well as bad juju for the correct mindset to fight. ( I automatically assume every man who has this crap is desirous of defeating it.)

Tall_Allen profile image
Tall_Allen

When I was diagnosed, I decided it was something I was not going to be in the closet about. Speaking as someone with experience with this sort of thing, I know how keeping something in the closet gives it a lot more power over you. The thing you're trying to keep hidden becomes the thing your life is about. By talking about it to anyone who will listen (and some probably wish I would shut up about it already!), I take away its power. It's just a disease - humans get diseases - it's part of living. It's not who I am, and I am not ashamed of it.

Everyone's experience with prostate cancer is different.

Hex40 profile image
Hex40 in reply toTall_Allen

The decision was related to my business. I was a consultant to a large public company and only one person there knew of my condition. He gave me some leeway to deal with it and if others knew it may have caused some issues. I was an outsider not an employee. I have since retired but limit knowledge of my illness to immediate family for now because I don’t want to be treated differently. When the time is right I will open up.

Tall_Allen profile image
Tall_Allen in reply toHex40

it starts with you. Do you treat others differently when they tell you they have diabetes, a cardiac stent, afib, or HIV, for example? From personal experience, it is only because I think I am different (and less, in some way) that I hide things about me and imagine that others will judge me. Others take their cue from you.

whatsinaname profile image
whatsinaname in reply toHex40

Totally agree with you, Hex40.

I completely empathize with you.

Open up ONLY when YOU feel the time is right.

WayneSC profile image
WayneSC in reply toHex40

It is your decision totally and everyone here will support it. I wish you the very best. There are many options available to all of us as my Urologist likes to say.

greatjohn profile image
greatjohn in reply toTall_Allen

Amen, Brother. Secrets give others the potential for power over us. Plus, like I said, I have helped and been helped by people who "never would have shared" if I hadn't just come out and told them "how I REALLY was" when they asked...

Vindog29 profile image
Vindog29 in reply toTall_Allen

And so many lives wouldn't have been enriched,educated,helped, if you stayed in that closet..we are ALL the lucky ones you didnt.

MJCA profile image
MJCA in reply toTall_Allen

Well said!

in reply toTall_Allen

Well put!

ctarleton profile image
ctarleton

The day will come when you are outside or at some neighborhood time/place of interaction and somebody will say "How's it going?", and you can say, "Not so hot, I'm getting treatment A, B, or C for my .... (fill in the blank) ..... cancer." And then the other person will likely respond with something from an assortment of platitudes, .... and then you can both take a deep breath, relax a little, and go on from there. In my experience, it gets easier, thereafter.

Some of my favorites reactions from others have been:

A stunned expression when they hear the words "Stage IV", "incurable" and "spread to bones".

"Well, they're coming up with new things everyday."

"My lawn guy's sister bought this kind of light box that they say works on all kinds of cancer."

And, of course, the very common, ...... "Well, you Really Look Good."

Charles

Crabcrushe profile image
Crabcrushe in reply toctarleton

Lololololol if I could I'd rofl!!!

"Light box"

paulparry profile image
paulparry

I think it can be down to how aggressive it is. Low Gleason grade and hardly any side effects must be so much easier to deal with emotionally and outwardly.

Aggressive PCa is completely different, opiate pain relief causes side effects, constant monitoring of PSA, scans, bone mets is a worry. Its hard to bottle it all in.

Find what suits you. I am happy to talk with those that ask but dont push it on those it scares.

Zetabow profile image
Zetabow

I've been very open about it (I was so poorly in Nov with pain I couldn't hide it anyway), I found it's been good for my soul not to bottle up these emotions. Being an International Sportsman I've got a lot of support from friends everywhere, it gave me strength, also I think by being open you could save someone from my fate of advanced PC in raising awareness.

MarkBC profile image
MarkBC

When I was diagnosed, a friend who went through colon cancer gave me some advice. He said I should be open about my illness. Other people will find out. They may start to avoid you because they don't know what to say. Cancer can be an awkward topic for some people. If you bring it up first and let others know that you are comfortable talking about it, you will break the ice. You will end up drawing others closer to you. I think it is good advice.

ITCandy profile image
ITCandy

I've kept my metastatic disease secret for the last 42 months, with only my wife knowing about it. I didn't want my young kids to stress about it or be treated any differently at work.

Compared to so many others, I've had a pretty easy go of it, getting a Lupron shot every four months and having my Zytiga mailed to me monthly like clockwork.

It was important to me that I live a normal life and not have the focus always centered on my condition.

Getting super healthy and educating myself on every aspect of this disease and every type of treatment available is where I draw my power over my Pca.

Break60 profile image
Break60 in reply toITCandy

When asked “how you doing? “ I just say I’m doing fine. I’ve adapted to my circumstances and live life. People know I have PCa stage IV because I’ve shared it from the beginning.

Bebby1 profile image
Bebby1

Every human is different

Every family dynamic also

This diagnosis does demand some form of treatment regardless of stage

It is without doubt that there will be some changes visible be it mood / hair loss/ etc

Whatever and whoever you choose to share/ not share is completely ok

My husbNd has found that many men in the town we live in and friends and family have Had a PSA... sometimes their first , or at least a chat to GP

THATS BEEN SO POSITIVE

Look after yourselves

Life is good

Treatments are improving

Many who have fought the good fight and participated in trials have paved the way for the newly diagnosed

Metungboy profile image
Metungboy

I feel for you.

I have been in the health business as a professional for 35 years, I looked after about 80 people who died from AIDS in the early days of the epidemic.

I have also looked after many patients with cancer, cardiac failure, debilitating chronic obstructive pulmonary disease and neurological degenerative diseases.

I have seen many different strategies for coping with this sort of personal trauma.

I now have extensive metastatic prostate cancer in bones and lymph nodes.

I have a view about what is " the best strategy" but even though I have had the above experience I am not saying that my view is " the correct view".

My view is

1.0 Be brief and frank.

2.0 Give regular written bulletins to all that are interested.

3.0 Avoid "positive talk". revert to the first bit of advice.

4.0 Never attempt to protect the people you love by diminishing the severity of the news or the prognosis. The corollary of this is when the people you love present to you excessively positive views bring them back to earth with frankness and clarity.

I have seen so much long-term damage done to loved ones who had no idea about the the processes their sick and eventually dying partner, or lover, or father, or mother, or child or dear friend was enduring.

They had no idea because the person with the illness was diminishing the severity and distress with weasel words or unclear utterances.

They would sometimes stuff like "I will be okay because I'm different to the average person because I'm more positive or fitter or some other discriminator word ".

Things like "I'm not good" which in my view should be replaced with "I'm feeling really bad and scared to death about what's happening to me."

I am a doctor and I had to travel in a car with a colleague two weeks ago. We were talking about how I am coping with having such extensive metastatic disease with no hope of cure. I expressed that my hope was that I could live well for as long as possible but my median survival from diagnosis 2 years ago was about 40 months. This is a fact and thinking positively or negatively or otherwise makes no difference. I also said that even knowing a median survival doesn't help tell you which group you are going to be in but it's a guideline about what is a reasonable expectation. It means I have a 50% chance of living less than 40 months and a 50% chance of living more than 40 months.

He said to me that the difference between him and me is that he could be hit by a bus or have a heart attack but I have knowledge that I am likely to die within 40 months (or now within 16 months given that I've been alive post diagnosis, for just over two years.)

If a layperson had said such drivel to me I would have let it pass but as he is also a medical practitioner who should know better I attacked him with vigour.

I explained that like him I could have a heart attack or be hit by a bus however I have fucking cancer in my bones and he doesn't. Please do not try to diminish the severity of my plight or suffering with such pathetic platitudes!

I have also had some of my friends who are religious who know of my staunch atheistic views who can't help but put their hands on me and mumble religious mumbo jumbo behind my back. I find this insulting. even though I understand their motivation.

I have been in the medical business for a long time and I understand that my views are my views but I think my experience does have validity. I have seen people who have tried to protect their loved ones (including my sister who died four months after presenting with metastatic lung cancer in her brain) and my view is it is not a sensible strategy and causes significantly more damage than brief frank statements of the truth.

Availability to discuss this after the news has permeated also helps enormously.

Good luck, enjoy what you can and please reject my views if they don't suit.

whatsinaname profile image
whatsinaname in reply toMetungboy

Brilliant reply, Metungboy.

What stood out for me is your belief that "thinking positively or negatively or otherwise makes no difference". Instinctively, I agree with you on this.

Thanks and cheers, Metungboy.

tom67inMA profile image
tom67inMA in reply towhatsinaname

I believe, and think there may be some evidence to back me up, that a positive attitude does help. Attitude is was makes you seek treatment, eat healthy, exercise, and not produce as many stress hormones. It's important to be grounded in reality, but there is a coin flip chance you will outlive your prognosis.

whatsinaname profile image
whatsinaname in reply totom67inMA

I think almost everyone will agree with you, tom67inMA. Especially, on this board :-)

I have what I think is a positive attitude, very positive in fact. And, yet barely one year after diagnosis and treatment, my PSA has refused to come down and my mets have vastly increased in size and quantity.

Cheers, tom67inMA.

Metungboy profile image
Metungboy in reply totom67inMA

I agree and doing all those things can make a difference to quality of life. There is no evidence that attitude makes a difference to length of life. There is evidence that exercise and general health improvement improves length of life a little bit. I get what you’re saying that having a “positive attitude“ enables the activity but it is the activity not the attitude. The danger of the positive attitude is that it encourages denial of reality.

It’s a bit like me saying that I will win The lottery and therefore my financial problems will be resolved. I would be better off doing some sensible planning!

tom67inMA profile image
tom67inMA in reply toMetungboy

Agree with the lottery metaphor, must be grounded in reality. Response to medical treatment is by far the biggest influence on outcome. Don't skip treatment because of blind optimism :-)

On the other hand, I'm currently enduring chemo on the expectation that it will have a fantastic result for me. I won't know for sure until I have an updated scan. Until then, it's too depressing to think I'm suffering for an incremental improvement in lifespan.

whatsinaname profile image
whatsinaname in reply totom67inMA

Thank you for your message, tom67inMA. Since, I cannot figure out how to message you back, I thought I'd use the board just this once. If you need to communicate with me for any reason please e-mail me on carlos501b@hotmail.com. Thanks again, tom67inMA. Much appreciate your good wishes and thoughts.

tom67inMA profile image
tom67inMA in reply towhatsinaname

I responded in e-mail, FYI.

whatsinaname profile image
whatsinaname in reply totom67inMA

As of just now, I have not recd your e-mail. Please re-check e-mail address.

It is : carlos501b@hotmail.com

tom67inMA profile image
tom67inMA in reply towhatsinaname

Hmm, looks correct. Have you checked your SPAM folder?

whatsinaname profile image
whatsinaname in reply totom67inMA

Yes, there it was in my spam folder :-) Thank you very much :-)

Bebby1 profile image
Bebby1 in reply toMetungboy

A beautiful honest message

in reply toMetungboy

Thanks Metungboy😎

lincolnj8 profile image
lincolnj8 in reply toMetungboy

I too have extensive metastatic prostate cancer in bones and lymph nodes. I agree with your approach as far as telling people especially my family. I'm hoping for 5 years (at 14 months now). Doing good so far on Zytiga and prednisone and Lupron. Plus Oscal and monthly injections for my bones. Just turned 68 last summer and plan to enjoy my family.

Bebby1 profile image
Bebby1 in reply tolincolnj8

The word enjoy

Why don’t we think of that more often

I believe everybody is looking at the map

So many roads

Checking our survival gear ... so instinctive and every road helps to pave the way for the next weary traveller

Thank you all... you’ve made me think

I find such comfort here

I look at my husband and silently think of you all... and somehow I don’t feel so alone

Enjoy ... please all of you try and find time to enjoy ... even little bits

lincolnj8 profile image
lincolnj8 in reply toBebby1

You're not alone. My wife feels all alone because of the uncertainty of my future, and where it will leave her

i started my 11 year. oh at first i was abit scared but i had worked in the health field for many years so i went on line found out tons of info to smarten me up on it treatments cures u name it. then got a oncologists( piece of shit the 2nd one). now have a smart urologist and he knows a ton of info and different treatments don't hide your disease. u just got started the long road, and remember depending on your age and how fast the disease grows u got years to worry about your last days. have fun,do what the doc says and if not happy with him change its your body mind, don't be afraid to change if hes not giving u good info.

charlie

Crabcrushe profile image
Crabcrushe in reply tocharlesmeyers1964

Hear!Hear!

whatsinaname profile image
whatsinaname in reply toCrabcrushe

If only good MO's were in abundant supply !! :-)

whatsinaname profile image
whatsinaname in reply toCrabcrushe

Also, if only one were able to figure out immediately which MO is giving you good advice and who is not :-)

lincolnj8 profile image
lincolnj8

My wife and daughter told everyone in the family since I was hospitalized taking blood. All thought it was the end for me. 14 months later, still here. Because of my advance PC surprise, my wife got an overdue mammogram a few months later. She has breast cancer. Caught it early. She's ok after surgery etc. Long story short, we just went and told everyone. And let the chips fall. Enjoy our lives every day now. Told a good friend of mine (he has PC caught early). My friend had to wear a diaper till he could control his bladder after surgery. Mind you he's quite a tall big fellow. So I ask him , "Do you go to Walmart at 3 am in the morning and discreetly buy those diapers" he said "Oh hell no, I go into Giant Eagle In the middle of day on Saturday and stack that damn cart up to ceiling with diapers. Then I smile and whistle all the to the checkout line". I never laughed so hard in my life. Trust me, he did it.

in reply tolincolnj8

That’s good she caught it early ..

lincolnj8 profile image
lincolnj8 in reply to

Thanks Lulu700. I'm so happy she'll be OK

in reply tolincolnj8

I always say to myself I’m glad my wife is healthy. The reality is that our care takers if not diligent can become ill as well . Thank God.

Vindog29 profile image
Vindog29

Thank you for this honest post and ALL the people who replied. You shared on this forum with so many so others do know now and are there for you. Whether we tell people or not my husband has because I have a BIG mouth it becomes part of the path we were destined to travel..ONLY you know what is BEST for you and we are ALL here to support you in that decision

Crabcrushe profile image
Crabcrushe

I know I'm "thick", but I tried, and I can't find a reason to be nervous about anybody knowing I've got PCa. It's not a STD or the flu; who gives a flyin' flip whether anybody finds out? The more people who know you're fighting the SOB, the better chance you have of gathering useable intel. Seriously -no attempt to be demeaning-why the perceived stigma?

Charlie

whatsinaname profile image
whatsinaname in reply toCrabcrushe

Read Hex40's reply thoroughly. You should be able to understand his reason/s for not coming out.

Besides, to be brutally honest, most ordinary folk don't know a fuck about cancer, let alone prostate cancer and will come up with the standard crap : Stay positive, have faith in God, eat healthy, exercise a lot, etc, etc, etc. So what possible good can come from listening to them ???

I know I am in a minority on this one and have no problem with that whatsoever :-)

Cheers, Charlie, nice talking to you.

Crabcrushe profile image
Crabcrushe in reply towhatsinaname

There's 'minority' -in my esteem- regarding anybody's postings on any given msg board. Just a set of opinions per anal pore. Your biz is yours alone m'amigo; I can only pray you don't miss out on serendipitous information that could prove key.

I don't blame you in the slightest for Jacob's a case of the jaws re: your numbers, either.

Charlie

Crabcrushe profile image
Crabcrushe in reply toCrabcrushe

Supposed to be "no minority"

Tablettyping...

Crabcrushe profile image
Crabcrushe in reply toCrabcrushe

Lol, "Jacob's= "experiencing". This Fire is smaller than my prostate, and idiotic in its choice of terms. Snowed in, or I'd have gone to the cabin and retrieved the laptop.

leo2634 profile image
leo2634

I tell everyone I know because I believe in prayer and the more that know remember me in prayer or at least say they will pray for me hey every little bit helps. Stay positive my friend Cancer hates that. Leo

JavaMan profile image
JavaMan

I am in the “tell people” camp but understand that is not for everyone. I did not want my kids to be surprised by anything along the way if I had hid this from them. My wife is the one who shared mostly with our friends. And it came with a message from me that I don’t want to talk about it much or dwell on it. I am outwardly symptomless so I don’t feel any different. I don’t want every interaction to start with “how are you feeling” but that can be somewhat inevitable because people care. A quick “fine” reply and I move off of it.

Zetabow profile image
Zetabow

The only people I haven't told is my two Boys, at 10 and 8 years we feel they really don't need the stress and worry at this young age, they understand I'm ill and I've explained as much as possible about my treatments, what makes it easier is they've seen my health improve over the last few months (less pain and fatigue) I think when we know things are getting bad we will obviously tell them but until then do they really NEED to know, hopefully it will be 3-4 years down the line and they will just be that little bit older to cope. It's a tough not telling them, I don't like keeping secrets from them.

larry_dammit profile image
larry_dammit

Wow, everyone has to face this monster his own way, me I am and always have been independent and self reliant. When I was diagnosed I decided to go with the other way, I turned down donation events and such but want every man out there to know how dangerous this monster is. Yes I had some friends that stood back and didn’t know what to say or do but as a whole I’m glad I told all that I had this monster. It takes a while but they will settle down and start talking again. Good luck with the monster

Jackpine profile image
Jackpine

Hex,

First I applaud you for recognizing this disease is taking over your thoughts as then you can move forward. I’ve found talking to my friends, my wonder wife and children have helped me, deal with the highs and lows of wins and losses this disease give us.

Celebrate the wins, don’t dwell on the losses and know there is a lot of research that is allowing many of us a great life for many years.

I also want to add support to Great Johns comment that people need to hear about this disease and push for increased research. I know my daughter after I was diagnosed started talking to to her friends and they started to participate in the Moostash run in Minneapolis every November. The first year she had 3 friends run now they have about 15 running to support me. Her friends now talk to their fathers about making sure to get checked.

Stay strong, be open to talking about how you feel and know people on this forum are also here to listen and offer support and treatment options.

Mathes72 profile image
Mathes72

I am there,told only a very few people about my mcrpc,it is no one's businesses. I would prefer that at the cancer center they did not greet with how are you.maybe I an to senitive

whatsinaname profile image
whatsinaname

What about the mets having increased in both size & qty ?? As per the F-18 DCFPyl scan taken on the 23rd of February, 2019 ??

monte1111 profile image
monte1111 in reply towhatsinaname

So really sorry to hear that whatsinaname. I am sending positive thoughts your way. Smiley face here.

whatsinaname profile image
whatsinaname in reply tomonte1111

Thanks, monte1111, I really know you mean well and appreciate that.

Crabcrushe profile image
Crabcrushe in reply towhatsinaname

Use all known weapons, tactics and strategies, develop ancillary, auxiliary and support networks, maximize yours and your Team(s)' time, energy and funding to discover applicable intelligence and exhaust all capabilities, aiming them toward the solution of your problem, after gathering all intel, listing, analyzing, selecting and implementing courses of action for each facet of each battle, and kick crab ASS.

whatsinaname profile image
whatsinaname in reply toCrabcrushe

Easier said than done. Essentially because of being dependent on others. Who either don't have the required knowledge or are mercenary or both.

Will surely try though. Will go down for sure, but will go down fighting.

abmicro profile image
abmicro

Diagnosis can be a shock, but think about life and how your fight will help you live a very long time, and how you will enjoy that life with a new appreciation. This forum is the best place to be. We are all warriors.

j-o-h-n profile image
j-o-h-n

To 0100 0000:

I had a button made that reads "I have Prostate Cancer but I can still Kick Your Ass"... BTW it gets me a seat on the subway every time.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/03/2019 11:37 AM EST

Stegosaurus37 profile image
Stegosaurus37

In response to "how are you?" I have a couple of stock responses that predate my cancer: "I don't know, my wife hasn't told me how I am yet today." "Maahvelous, dahling, just maahvelous, how BRILLIANT of you to ask." Also "Never ask that question - someone might actually tell you haw they are."

I have my circle of friends and family that I told of my diagnosis and have reported my progress to. That's how I found that one of my grad school classmates had almost the exact same PSA history (admittedly he's ten years younger than I am) that mine was up to the point where they cut testing for it after my 70th birthday. His doc had the smarts to look further and he's been cancer-free for ten years whereas mine followed the homicidal Standards of Practice and as a result I wasn't diagnosed until it was way too late. But if I hadn't been open about my diagnosis I probably never would have found out how much my doctors screwed me.

monte1111 profile image
monte1111

Did not tell mother who asked about hair. She has since passed, and there was no need for her to spend her last 2 years worrying about me. Have not told 12 year old grand daughter, who has already lost her mother and grandmother. Have told those around her that were 40 or over to get psa tested. (I never, ever was). After first emotional announce-ment, we don't talk about it a lot. Don't think anyone ran down to get psa checked. Grandaughter's 61 year old "uncle" said he would. He now has a friend who had an RP. Says now he really, really will get it check. Hasn't yet but has taken new puppy to vet 3 times in last 2 weeks. My 63 yr old brother got his checked right away and we talk about APC quite a bit. I am rambling, gentlemen. Tell those who should know, shield those who needn't know. Cheers.

JazzMan42 profile image
JazzMan42

I was diagnosed November, 2018, with Gleason 9, and am still trying to figure out, not only how to manage the beast, but who and how to broadcast my diagnosis. Except for my wife who is incredibly supportive and kind, I have only told three close friends who I trust not to blab. At this time I have not told my two adult sons because my rationale is not to worry them until there is something visible that shows my disease ( they both live hundreds of miles from me so they do not see me on a daily basis.). I consider that my rationale may not be sound and I would appreciate feedback from you all.

I still have this notion that prostate cancer is "embarrassing" as guys flinch when one mentions problems "down under" ( and I don't mean Australia). It's probably my newness with this beast that creates these notions. Any thoughts?

Hex40 profile image
Hex40 in reply toJazzMan42

For me it was basically I don’t want to be treated any different than I was prior to my diagnosis. I don’t want to constantly asked how are your treatments going or you look great or are you in any pain or I hate to say it, will your wife be able to stay in your home after you are gone or the whispers you are going on behind your back. That’s why we took our in ground pool out last fall make it easier for my wife should I meet my maker. Work was also a big issue because I had lots of friends there so I retired and that’s now behind me. One of my three siblings knows because he lives near by. Other than that my wife and 2 adult children plus one very close life long friend who is hugely supportive know. I know the day may come to let others know but for now I’m comfortable with my decision.

in reply toJazzMan42

It’s because we men are taught only one way of thinking ...in the U.S. .thats macho , it’s worldwide...ego must go to live without “T” and that’s easy to do once youre castrated , be it chemically or surgically , no “T” is a travesty for anyone but especially a man under 65. I was single for 53 yrs. Hung out with a bunch of other Wylie life time bachelors like myself. I got married upon dx. Never seen any of these chumps after my news to them ..., ...I was always the one preaching , don’t drink too much , try to eat healthy, so when they saw me go down in flames they scattered into the wind. So has my dysfunctional family .My saving grace like you is my caring wife... I do have the best love of my life here with me now. I’m good with my compact family. All hangers on fell by the wayside. The initial blast of APC is a fight for life. Not for the weak hearted . I ve seen in these pages the strongest the smartest and the kindness men and women facing APC together . Horrible suffering yes,and with any good news tremendous joy. Most young healthy guys are petrified to even think or talk about Prostate cancer.. I was the same way before dx. Typical male .

Hex40 profile image
Hex40

For me it basically I don’t want to be treated any different than I was prior to my diagnosis. I don’t want to constantly asked how are your treatments going or you look great or are you in any pain. Work was a big issue so I retired and that’s now behind me. One of my three siblings knows because he lives near by. Other than that my wife and 2 adult children plus one very close life long friend who is hugely supportive. Double post

whatsinaname profile image
whatsinaname

I have been consulting two MO's. Both young (40-50), US educated , top schools, work experience in the US and elsewhere, including India.

One a male. The other a female. The male, I feel, is a mercenary. The female, I feel, is more considerate and caring.

The male looked at the reports, said "no problem" and recommended Xtandi original version costing a bomb (on which he gets a massive cut). After 28x3=84 days on Xtandi, he will re-evaluate. Maybe, the mets would have increased further or maybe I would be half dead.

The female looked at the reports and told me that the disease was aggressive and had to be tackled on several fronts. First, she recommended Zytiga 1000mg along with Wysolone 5 mg, twice a day. Second, an injection called Zolasta 4 mg. Third, I do genomic mapping. Fourth, I check out the possibility of Lu-177-PSMA-617. I am going to the hospital today in another 60 minutes.

Tell me honestly who do you think is the better doctor ? Btw, in addition to being far more humane, the female charges half of what the male does.

Any other questions, I will reply after about 12 hours. I am headed out to the hospital with my wife, positive as ever :-) Singing Louis Armstrong's "In the bosom of Abraham" and whistling pretty false :-) Cheers, SsamO !!!

in reply towhatsinaname

Not all female characteristics are bad for us to inherit... .. women’s compassion trumps the male ego..

Darryl profile image
DarrylPartner in reply towhatsinaname

Hin, based on your post. You will want to attend our NYC conference.

whatsinaname profile image
whatsinaname in reply toDarryl

I am Bombay based. Not that I don't travel to the US ( I have a 10 year visa) , but I usually do so when I am not taking treatment and am almost completely free.

A convoluted disease..

Maleko808 profile image
Maleko808

Since being diagnosed Oct 2018 with a Gleason 10 and mets to bone i have been very open with family, co workers, and friends. And I told one person in neighborhood knowing that the news would get around LOL! It has been interesting to see who comes by, says hello, and who avoids me like the plague. One brother disappeared, another reaches out often. As we sail through this journey we choose to enjoy the highs, tolerate the lows, and follow our hearts. Those who wish to be part of our lives are there.

Jimhoy profile image
Jimhoy

Hex

First of all;

The chemical ADT can / will change your emotional wellbeing. Before I started my Eligard treatment, I can’t remember the last time I cried...the last time I was afraid....the last time, well, concerned about the death of someone I don’t know!!! Being an “X” tough guy, I’ll just say acting “girly”!!! I am not a misogynist but ADT turns us into women with the removal of our male hormone. After 18 mo’s of Eligard, I have had soooo many strange thoughts and feelings that I just recently, got a Rx for it.

I held off for a long while for fear of being labled a nutcase, I was wrong! It helps and only when I need it!!!!

Secondly;

If you relating that story to your condition....and it persists!!! Get a check up from the neck up!! That will not fix itself!!!

Thirdly;

I agree with your position and likewise, only told very close, trusted family and friends!!! The proof of the need to protect our privacy is your neighbor telling you the story about “his” friend as you stared above!!! If you had told him about your condition, odds are you will be the toplc of conversation at his next dinner party!!! I know, I am surrounded by Drama Queens! Not bad people, it’s just what they do!!!

As far as I am concerned, this cancer is one of THE most emasculating things that can happen to a man!!! In addition to my first comment, if you’re lucky, you’ll also only be a unic for a few years!!!

I prefer / insist that I control who knows this about me!!!!

Take care of yourself

Jc

whatsinaname profile image
whatsinaname

Health Insurance was definitely an option. However, the insurance companies try their best to weasel their way out of paying in full and that pisses me off. I therefore cancelled my policies and now pay everything on my own. From 2011 till 2017 (for 7 years) , it paid off as I did not have to pay either the hefty premiums or had any medical expenses. But, since cancer struck in 2018, the story is different.

I have just found out that insurance does not cover Lu-177 or Act-225. Does not matter to me as I have no insurance and pay out of pocket. Hospital room rent also has a ceiling, too low for me. All in all, I am much happier paying out of pocket than dealing with these crooked insurance companies.

Yes, the female onco is decidely better. Today, I had to ask her something and her phone was engaged. She called back within the next 5 minutes and spoke to me for a good 10 minutes. This is something which has never ever happened with the male quack, who never is available to talk. He does not even bother to reply to messages (WhatsApp). Besides, the bloody mercenary always suggests a line of treatment that maximises his income. Period. Therefore, I gave the scumbag the boot :-)

Thanks for asking, SsamO. Hope I didn't bore you :-) Cheers !!

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