I still think the only thing that will start the ball rolling faster...is a BIG SHOW of how many men...how man young, how many old...how MANY men have Prostate cancer and are affected by it....AND EXACTLY WHAT THE SHITTY EFFECTS ARE...IMPOTENCE, DRIBBLING, PISSING...SHITTING...CASTRATION...HOT FLASHES, FREEZING, NO ENERGY, NO MUSCLES...ETC... Then, someone might start listening... including Washington.
WE NEED TO MOBILIZE A MARCH AND BE HONEST ! ! !
Women cry about loosing a boob...and get MILLIONS through Susan Komen Foundation, ETC...I've donated to it. Boobs, SMOOBS...men need to be honest about how shitty prostate cancer REALLY is. I always thought the worse kind would be anal cancer. But I'm pretty sure this beats it. I always dreamed of dying from a heart attack..(still do, if I'm honest)...
Does anyone else think being MORE visible..."crying like babies and being honest"...MORE...and NOT "manning up"...or "being strong"...and just dying quietly might help?
All of the generations of "real" men who have done this have done VERY little for the fight for an actual cure...or even BETTER treatment options...Castration as a treatment option sucks 10 MILLION times more than losing a boob.
Just my "humble" opinion about men's attitudes...especially now in this crazy era of "me too".... it's time (if women want equality) for MEN to want equality.....start crying about your loss of muscle...CRY about your loss of dick....CRY about your f#8cking HOT FLASHES. Cry about dying silently!
All in all I feel great...but reading the "journey's" of most people on here...just keeps making me angrier and angrier that NO one knows...UNTIL they ARE FORCED TO KNOW...about this really heinous cancer. I always thought "it was the best cancer and most treatable"...so I never worried about it. HA HA .
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Agree with your reflections on the hideous nature of the disease - which is mostly due to the barbaric treatments.
Not sure marching on Washington will help. We have the best government money can buy, marching won't change that.
While the women have been much better at organizing and getting money, it's not at all clear that they are getting a lot of benefit from it. Publicity, yes. Cures, not so much.
BTW, hormone therapy is given to many women with breast cancer. Instant, severe menopause. Hot flashes, insomnia, osteoporosis, weight gain, muscle loss, depression, loss of libido, cognitive decline, all of the things men on ADT suffer. I have a lot more sympathy for menopausal women after my experience with ADT!
Breast cancer treatment is a lot worse than just loosing a boob. ADT, surgery, chemo, radiation, they get a lot of the same stuff we do. They don't often suffer the urinary indignities, but some of them resent the loss of libido, just like some men. Appearance matters more to women than to most men; they are inclined and taught to pay careful attention to their bodies. The physical deformity can upset women every bit as much as impotence does men.
Beyond all that, I'm not sure I want any more "help" from the government. Everything government does seems to produce the opposite effect. If Congress were to outlaw abortions, in 10 years men would be having them.
interesting thoughts. I wasn't trying to say that losing a boob is good..and I realized that advanced breast cancer is just as bad....it's just THEY get all the attention. I guess it won't change../can't change....and...a (just now) funny? thought...what about all the transgender men to women...SOON there will be a lot of "women" having prostate cancer. That's going to be another interesting one for the books!
I think you are right John. There are too few men in the trenches that are as vocal as you and I. I want everyone to know what I am going through. I've got lots of male friends in their 50s and a percentage of them are going to face this. I want them to know a little more about it than I did.
I realize you weren't trying to say that losing a boob is good. I'm just very cautious about minimizing the trauma any of us face - that's rarely helpful.
We need all the help we can get, and we could learn a lot from how women organize themselves and support one another. No need to make this us versus them, we're all in this together.
Okay, you got me to thinking about this transgender thing and I just got off course. If a woman got prostate cancer, would she see a urologist or a gynecologist?
I'm not making this up. I was on this site a good while ago making the same observation/complaint that breast cancer seemed to get more attention and funding. I made the observation that the NFL players will wear pink ribbons on occasion but never blue ribbons. I had to stop my typing and answer the phone. It was a charity soliciting funds ... for breast cancer research ! I've never received a call related to prostate cancer research.
having babies and comparing it to death sentence stage 4 cancer is crazy. Having a baby is a lot of pain FOR a reward( a child ) and the pain is NOT forever. I've had 3 times in my life where I had "unbearable" pain...and if it was "forever"...I'd want to pull the plug...but I knew it wasn't...one was a kidney stone. One was Shingles (a REALLY severe outbreak that my doctor said he'd never seen it so bad) AND...the Monday after doing Chemo on Friday and having the Neulasta Onpro do it's thing....**they forgot to tell me about Claritin. EVERY bone in my body (and figure out how many we have) felt like it was exploding and bursting. As soon as I got the Claritin ...and the pain went away by 80 %...I basically forgot the pain. So short lived pain is a little different. Life is beautiful!
P.S. I wasn't trying to say that losing a boob is good..and I realized that advanced Breast cancer is just as bad as Prostate Cancer....it's just THEY get all the attention/sympathy/support groups... I guess it won't change../can't change....and...a (just now) funny? thought...what about all the transgender men to women...SOON there will be a lot of "women" having prostate cancer. That's going to be another interesting one for the books! It's going to be an even MORE interesting world soon. LOL.
What we need to do now is get the Federal Right To Try Law passed.,The bill passed the House and failed by 1 vote on a voice vote in the Senate. That lousy prick Schumer was the only no vote. This lifetime bloodsucker, walks around with his glasses on his nose taking money from every lobbyist out there...Big Pharma opposed this bill and a call was made to their good buddy Schumer...guys dying from PCa could have gotten Darolutamide and Proxilutamide
Thanks for the info about Schumer and his block of the Right to Try law.
I wasn't sure about him, but his blocking the Right to Try certifies to me that he is "over the edge".
I don't know about the rest of stage 4 patients, but I don't need Schumer protecting me.
I wonder if we (healthunlocked) have many New York members. ?
If so, maybe they could let Schumer hear about the need for the Right to Try law for terminal patients. I know their voice would be weak compared to Big Pharma, but at least he would hear.
Maybe the Million Man March could be on Schumer's office. ?
Breast cancer is by far the most publicized and donated to, followed by colon and lung. Any cancer is a horrible thing. Ours is incurable but treatable. Haha that's a good one. Nobody really knows about the debilitating horrible pain, suffering, fatigue, depression, and oh yeah from my sister I get them hot flashes all the time. Only we do.
It starts with this community. A leader, a group. Then who knows. Maybe??
I’m a woman with a husband with prostate cancer. However, I agree with John that a more mobilized effort would be a good idea. I would also suggest getting genetic testing done as part of a research study, my husband recently did this. It was simple a Cheek swab that came in the mail. I’m also concerned that not enough men are going on clinical trials. I think a movement needs to take place. Mobilize a movement to collect data and move clinical trials forward that might help.
Okay Blair77. I agree. I am also a woman and have been in this fight with my husband for 23 years. What I noticed, especially in the beginning of our fight 23 years ago, is that the men were quiet about having prostate cancer. They just didn't speak up. My husband was 52 at the time of diagnosis. He didn't want anyone to know because of what he perceived to be a stigma attached. The only men at that time demanding money for research were those affected by AIDS. Now, I think we have a lot of men with PC who are willing to get out there, yell about funding, and form wonderful associations where monies are directed for Prostate Cancer research. The squeaky wheel gets the oil. We are all in this together - breast cancer, prostate cancer, etc. With colon cancer, which runs in my family, the doctors are still in the Middle Ages of treating that one. We have seen sooooo many different treatments come out during the last 23 years for prostate cancer. We need this and more. Yes, it's a crappy disease. Yes, it affects the entire family. You are not in this alone. I can attest to the hundreds of hours that I have had to fight for my husband for therapies with the insurance companies. I have flown with him places for clinical. Cancer sucks for everyone. I hope that you are familiar with the Michael Milken site on prostate cancer. He put his money where his mouth is for disseminating information and giving help. Your families love and are there for you. Just tell us what you want and help us mobilize.
Yes it’s true,we men just put up with it instead of complaining and telling everyone that passes by. The only way we will get anything done is by using this format. Turning our legislative group onto it. Fight the good fight
first of all, I enjoy your posts. this morning alone you have made me laugh, provoked me and given me the shivers.
....and I read all of the responses below and am grateful to be here and to be able to participate in this conversation.
this morning I came upon an old email exchange between myself and a high school friend who was dying of melanoma....I miss her and always will.....
ok, back to topic: boobs v. dicks.....just joking....
several years ago I learned that the local breast cancer "showhouse" group also gave money for prostate cancer research....and, coincidentally a friend asked me to volunteer with her women's group to staff the 'showhouse'......I made a point of telling her group leader that I was there not because I have or had breast cancer but b/c my husband has prostate cancer.....so I googled the group just now and found that they are going to be funding a professorship for prostate cancer:
thanks for "getting it"...I'm not saying one cancer is worse...or better...What I would like people to take from it ...is to speak up. Men (especially the group just older than I am..I just turned 61) ...were taught to be "strong and silent". I have had to "admit" to having it...and then still keep "digging" to get men around me to admit that they had/have prostate cancer. It makes it look like (honestly, it did when I was younger)...a "good" cancer. Because you never heard anyone complaining about it.
Being the tail end of the "baby boomers" ....I'm pretty sure the "me me me" generations that have come next (those just a few years younger than I)....will be much more VOCAL about their issues.
My own experience. I told everyone I know (even on Facebook) ..and spoke extensively with a friend of ours who is also our accountant.(CPA). He used to "cringe" listening to me. Then....alas, he came down with a cancer called PMP. VERY rare. He told me about it (because I had shared). He was being treated at a local hospital, Mt. Sinai in Miami Beach. His doctor had said ...."well you're old...get ready for the end...and keep doing the chemotherapy to slow it down". I got on the computer and started researching PMP...which I had never heard of....found that the Moffitt Cancer Center in Tampa spoke about it at least...and told him he should call them...and GAVE him the number of someone I spoke with there who was very helpful.
fast forward....he DID...and he thanks me almost EVERY day . He called "my guy"...and he directed him to the only two surgeons in the entire U.S. that treat this cancer...surgically. He picked one in San Diego who is close to his brother's home and went for a consult. He's now had surgery in the summer of last year...and his prognosis...well...that doctor said ....if you feel okay...don't worry...and call in about 5 or 6 years and we'll check on things. He has a MUCH better life now...BECAUSE...I wasn't "strong and silent". So it's NOT about being a "girl" or "selfish"...it's about being a PART of the human tapestry and being able to share and help others...and, hopefully, receive help from them.
Re. Breast cancer...it seems many of the drugs (chemo) that are used for Prostate cancer...actually come from breast cancer treatments....so, although I feel like the "hand-me-down" recipient....it's STILL a blessing to get the "hand me downs" when they help. LOL. P.S. I do always try to add some kind of humor or shocking words to make people think.
Good Luck on your and your husband's journey...as I keep saying "it's a winding and road and we never know what's around the corner". ~~let's hope for some beautiful vistas!
without comparison there is NOTHING. That's how I rationalize pain...because NO pain feels so good in comparison. **But It wasn't a KNOCK on women...it was a KNOCK on men...saying men should be MORE LIKE women....tee hee. CRY, complain...and be weak...because if Lupron doesn't make you weak...well, you're a liar. I look and seem strong...but I know (and more sadly and importantly FEEL weak as water!) And when someone asks me how I feel...I'm honest. PERIOD.
it works for me...not for all. Good Luck on your Journey and all the best!
I agree we should be more like women and I have been because when my name is called in a Doctor's office I don't have a woman that grabs my hand and drags me in like I'm a 5 year old.
I went to a number of Prostate Support groups run by the Cancer Society and some guys would even bring their wives to those. Men need to speak for themselves- even Mike Pence who seems to let his mommy do his talking.
adlerman - What does Mike Pence have to do with this post? Remarks like yours are best left to political blogs, not here. Last time I checked, cancer has no political affiliations.
I applaud you. And I think you realize what I am talking about.
It is good as a patient, though, to have a caregiver with you (wife/partner/friend/paid) who can help listen to the doctor and help you remember what questions you wanted to address...and also to remember the answers that the doctor gives. It's been my experience that I listen, but it's like I'm in a fog...because the things I am hearing, "Advanced".."Stage 4"..."Chemo"..."Aggressive" ..suddenly make the Lupron fog that I am always in...a little worse. I think from a quick scan of your profile that you're not on Lupron....it's a Life changer and a real kick in the ass. I always had a very quick wit and good memory ...and now I find myself stalling when I talk to think of words (even common ones) sometimes. If you're on Lupron...or just stressed...it is good to have a caring person along side as an ombudsman for you....
*Have a great Holiday Weekend....Time to walk our little Sparky (dog) before the rains start back here in South Florida.
I can't take Schumer's side or the side of anyone who sells out for a donation. We have to find a way to fight big pharma and stop them from killing us to fatten their bank accounts. There are no sides when it comes to health Monty.
the "m.o." for prostate cancer is getting younger and younger....it will happen(eventually) Not a march, per se, but more of a vocalization and therefore an awareness. I don't remember anyone every admitting that they had prostate cancer to me my whole life. I thought it was rare. When my partner got it 8 years ago...I was shocked and started research...when I got it...I already "knew what I knew"...which was a start! His was nipped with Radiation...mine was aggressive and is trying to kick my ass ! ! ! The bastard! but I know that even with his which was "nipped" with radiation....it's a total life changer and "not an easy thing to deal with". Just my humble opinion gleaned from telling everyone I know and forcing most to admit that they have it and describe their journey to me....at first reluctantly...and later, it appears, with a great catharsis!
Yeah man, 49, aggressive, cutting it out on Tuesday morning. It's real, and I'm younger, or like to think so... My name says it all, who would have thought this young. Oh well. We'll keep swinging at it. John, if I would have seen your thread about a march, I would have been all in as well. Heck, that's why I have PTO and a Harley RoadGlide...lol.
yes..49 IS young...and it seems like more and more younger people are signing on. I was 57 when diagnosed. They thought Gleason 6. I had radiation...PSA never went down below 2....then I had HIFU...never went down...then bone scans showed in bones..(at 60). Now castrated(on Lupron) and just finished a run of Chemo. 59/60 seems young too. Everyone around me is planning trips...doing things...and we're having to be very cautious about long term (6 months out) plans...and I'm worried now even about a 25 day European trip in August that I have planned with my partner. It's mostly non-refundable...and I get my next PSA next week....hoping for some good news. Good luck, again, with the surgery....you'll do fine with the catheter...I even went out to a restaurant (holding a shopping bag with my "bag" in it coming-out of the bottom of my shorts). No one noticed. Keep us posted.
I ain't sayin nothing, but go with your partner man. Cancer will be here when you get back. The trip to Europe should be taken by you two. The memories will due you justice when you're doing your rounds/radiation/fight. I'm just saying, GO! Come back with tales.
As I read all the posts, I have cried the whole time for all the pain, the fear, mental anguish, suffering we all are or will go through. The pain, honesty and anger is so real for everyone in this forum and also for so many who are terminally ill with other diseases. We do not have the recognition that this disease may deserve but I do know that there was a fundraising drive in Oregon by Safeway asking every shopper for a donation for prostate cancer patients and research and the same by a local coffee chain here.
People do care. They are our partners, wives, girlfriends and boyfriends, daughters, sons, sisters, brothers, mothers, fathers, co-workers, friends, neighbors and those we may not even know. We must not forget that or allow ourselves to feel forgotten. We are not.
If we are talking about government funding for research and other private research, there is much to be done but there is a lot being done as well, just check the National Cancer Institute website cancer.gov/types/prostate/hp or NIH Clinical Center recruitment clinicalcenter.nih.gov/recr... . It has not been publicly discussed almost at all until recently and research data takes too long to create movement in research and new treatments.
We have every right to feel sad, angry and a great sense of loss. You are all right that we need to express all of those emotions, so cry, scream and grieve but also remember to laugh, and play, rejoice, give lots of hugs and kisses. We are here for as long as we have, so let us all LIVE life to its fullest while we fight this disease! Let us go on trips to Europe, go back to school or whatever else makes us happy and relevant. After all, we are still here
I think our voices will be heard through all those we touch, those we tell our stories to, those we hug and those we love.
Great post. PCa does not have the publicity. Especially advanced cases. The focus on screening but not on how deadly the disease is. Mainly for a few reasons
- It is an old mans disease
- It is slow growing
- Even if you get it. It can be cleared up with an operation or radiation
For the vast majority this is true. But the remaining 10-15% still make up thousands of men and that group gets little publicity. Especially the treatments and the side effects.
I read your history over (again) and I feel like we share the "unlocky" gene when it comes to Prostate Cancer...LOL. I have stayed on top of my prostate since 50...going to a urologist having PSA done 3 or 4 times a year...and even after it went up my urologist played around thinking it was an infection...then later after biopsy...where it was 98% chance that radiation would solve it(Gleason 6)...to afterwards find it did NOT...and then did HIFU and that did not do the trick...only to discover it has gone to bones and lymph nodes. I started radiation at 57, so a little bit older than you....but it's difficult...because when I tell friends, people, anyone...they always respond..."you'll be fine". Have a great Memorial Weekend!
I can definitely relate. We drew the wrong genetic straw LOL. Been on top since 40 (family history), at 42 found GL6 (did active surveillance since "it was the slow stuff"). Rising PSA, thought it might be prostatitis from the biopsy, was on antibiotic and the PSA actually dropped a bit, but then rose and sure enough GL 7 and onto the RP surgery. Now doing salvage after a reoccurrence. Lucky the scans are still clean
Same response to me as well, "Oh you will be fine". Folks even say "Well if this doesn't work, those shots stopped it". I am like yeah, those shots take away my testosterone.
That is what sucks for PCa. It is bad enough for treatments of surgery, radiation or chemo. On top of that you need to shut off the hormone that make you a guy.
In any case, enjoy the holiday. Happy Memorial Day
We dont want to know as men...gay or straight because it involves our dicks... the direct connection to our maleness and no man wants to deal with or know anything having to do with the loss of its function. It's an ego issue. Which makes it a difficult topic. I've tried to reach out to my close male friends and even with the knowledge of what has happened to me there is still this "not me...not my dick... no way" attitude. Denial. So men are tougher to reach when it comes to their sexual prowess and the possibility of it being compromised. My father died from this and even when my PSA began to rise I trusted my family doc when she said that the number was still low...even though it was doubling. It was the blood in my semen that got me moving, but it was way too late by then. Again...denial. So...men ...on a subconcious level...dont want to know.
sadly, YES, I think you are correct. I wanted to know....my partner had gone through prostate cancer (radiation took care of it) almost 5 years before I got diagnosed. He's 8 years older. He's doing great...almost no PSA still 7 years out from treatment with radiation. Me, on the other hand...because I knew about his...pushed for a biopsy because the urologist kept wanting to blame infection...I still can't believe I'm "here"...with my advanced, pro-active technique I used early on. Sometimes you just have to believe in "destiny".
I have a tough time with destiny. I blame myself...my ego. Knowing what happened to my dad I should have gone to Dana Farber as soon as PSA started to rise. They might have caught it in time. This is what I am saying. I am the classic example of denial. Men need to pay serious attention to their PSA. If it starts rising seek out help at a cancer center for genitourinary cancers. Dont....wait.
Hi great John,.....As a care giver for my husband, I get it!!!
Sam was Dx at 65, now 74 young, a roller coaster for ten years now and has now almost exhausted all options.!!! "The Good Cancer" Ha!!! He's now on a targated therapy drug. Not much quality of life. He's always been a strong man and still not ready to give up!!
Take care, I've learned so much from your posts and love your wit.. 😊
My prayers and well wishes for all who suffer with this disease....🙏🏻
Thanks...I STILL have my wit...even if some don't get it...LOL. ALL the BEST to you and your husband as he hikes along the trail of life. Like I say...you "never know what's around the next bend". Hope it's a breathtaking vista!
That's what I mean about you, always trying to make light of all that we are going through.Besides all your expertise, you give everyone so much hope!! You give reason to keep up the fight!!!
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My name says it all, who would have thought this young. Oh well. We'll keep swinging at it. John, if I would have seen your thread about a march, I would have been all in as well. Heck, that's why I have PTO and a Harley RoadGlide...lol.
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