fascinating thoughts(facts as well) on Prostate Cancer, especially advanced Metastic, stage 4 Prostate cancer.
Guess what.
1. There are NO actual (in person) support groups in Broward County...they have a bunch for breast cancer, but none for prostate cancer. I found one group that looked like it was...but it was a men's "general" support group for men with different kinds of cancer. I spoke with someone there and she said she "thinks there are about 2 men in the group that have prostate cancer". With it being one of the biggest causes of DEATH amongst men...and almost ALL men get it eventually...you'd think there would be a support group in a place as populated as Fort Lauderdale. The closest one that I was able to find (through my online support group)...is in West Palm Beach. **I was shocked during radiation at Broward General that there were LOTS of posters about support for breast cancer, but NOTHING about prostate.
2. The type of chemotherapy that they use primarily for Prostate Cancer is a "hand me down" from Breast Cancer...it's called Taxotere. Makes you feel like you're wearing your older sister's hand me downs.....😢
3. Prostate cancer is (I'm pretty sure) the ONLY cancer that generally requires CASTRATION. That deserves a support group in itself. Oy, try talking to someone about what that feels like. Unless you "are there"...you don't have a clue....NOT a clue. Try talking to your oncologist about it...they blow you off and say the side effects are minimal....really????? it's CASTRATION.
4. RE. 3 (above)....one of the main side effect of CASTRATION is depression. Picture taking a "treatment" to cure an INCURABLE disease with a huge list of scary as crap manifestations and imminent death....AND taking a treatment(that at best just postpones the inevitable) that CAUSES depression. It would be hard for most to not be suicidal. **personal note. I'm so far doing great with depression...almost all of the "online" support friends are on anti-depressants, etc....I'm just taking it as it comes...but it ...
... Would be great to be able to talk with someone who understands the "pains" ...especially bone pain...and castration...and incontinenace ...and lack of energy....and (as someone this morning described)the feeling like a Heavy LEAD blanket is on top of you and you have to fight to move....This is what I had described very similarly to Richard and I describe it as being "out of gas"...or "On E".
I feel lucky to have Richard to talk to....I feel so badly for the people that don't have anyone. At times I wish I had someone else..."who knows"...to talk to and give support to...and then to follow it with "a hug"...Online that's not an option.
p.s. my Urologist who "discovered" the prostate cancer said to me once..."if women got prostate cancer, there would already be a cure".
p.p.s. I talked with a lady once who's husband had prostate cancer...and she described it as "oh, it slowed him down"...but he was "back to normal" in no time. .....THEN, I talked with him....BOY, the story was so TOTALLY different. It was hard to believe that she had been talking about "him"...talk about "fake news"....LOL.
if you get Prostate Cancer...be honest and real and talk about it...remember "the noisy wheel gets the Oil".
**I guess if you read this far...you see I was trying to explain what "it's like" to be "me". I was going to post it on Facebook...but decided...that (it seems like) if I talk about what's going on in my life people think I am hosting a "pity party"...which is not the case..or they think I have a "bad attitude"...which NO ONE has a better attitude than I....but it just seems unreal to me what I have encountered and gone through since my "Prostate" got into the picture...LOL.
**p.s. I was researching this morning because I have been having pain across my chest bones...and in my legs...and hands...etc. I was looking at the Joy Of Lupron ...haha ...to see if these were potentially from it...OR if it was my bone cancer spreading ! ! ! It seems like it's par for the course of Lupron (which is good news)...and I get my latest Petscan read this Friday at my Oncologist at U of M Sylvester...I just finished 6 sessions of Taxotere and have been castrated for almost a year.....last p.s.a was only down to 1.1. ~~I got the oncologist to admit that this makes it looks like the cancer is aggressive...HENCE, the second opinion I am going for at the Moffitt Cancer Center on Monday. I want to make sure my next "course" is right. It's a long and winding road....and I am hoping that both agree that it will be okay for me to do a holiday (already put deposit down) to England, Scotland and Ireland for 3 weeks in August...photo is from our trip last August (a cruise in the Mediterranean). I'm trying to keep on keeping on ! ! !
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greatjohn
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Hi GreatJohn Though we are "not in person," we are certainly your support group, your brothers and your family here. You might also try click ing on our People Near Me feature, healthunlocked.com/people-n... and see if anyone from our group here, lives near you. You can then private message them and see if they want to meet up. Who knows, you may find enough gys to start your own Malecare prostate cancer support group.
thanks Darryl..you helped me with finding the group in West Palm Beach that I mentioned..it's over an hour away from me...and I think they meet at "rush hour"..so it would be so stressful to get there...LOL...that the "support" might not help. I'll check out what you just sent...OH, and THANKS SO MUCH for connecting me to the groups in San Francisco that helps connect people with trials. The contact there is so nice...she's made the experience a pleasure. THANKS ! ! !
Hi John I also live in Broward county & am looking for a support group or friends to talk to about this if you find a group or just want to talk email me bjf103@msn.com my name is Bill
I just used the locator...there is only ONE person close and he's really close ...4 miles. I just wrote him and asked if he'd ever like to get together for coffee and a chat! Thanks again!
tee hee...might appear to be...but it's more "the noisy wheel" thing. Women DO talk about breast cancer..so it's gotten lots of momentum...
I have never met a man (until I started telling everyone I meet) that has admitted to having or having had prostate cancer. It's hard to admit something that makes someone "feel like" less of a man. We hear over and over about how women feel about losing their hair... "losing a breast"...but they are kind of in a place where losing them doesn't change EVERYTHING...like peeing, erections, pooping, etc...the diaper thing...the pad thing...makes it, I guess hard for men to talk about...??? but unless everyone talks...it's funny you mention "act up"...it reminds me of the A.I.D.'s original group..ACT UP ...without them...HIV would have never been turned into a manageable disease....so vocal DOES help! ! !
it's funny you mention "act up"...it reminds me of the A.I.D.'s original group...ACT UP ...without them...HIV would have never been turned into a manageable disease....so vocal DOES help!!!
Yeah, I'm pretty serious..we're supposed to bear this affliction silently, be "men" about it (what? Die like a man? F-you, buddy!) I hear ALL the time, boy you're lucky! That's the most easily curable cancer there is! Like jkHolmes notes in his message. RIght, bucko...let me tell you about it.
I think it IS time to be more "ACT UP" like. The "strong silent" act...doesn't get anyone anything! I decided NOT to post my post on Facebook...but I think I will NOW. I keep hoping that my posts will help someone...and they'll realize they're not alone....AND as I am reading your comment..I am seeing someone also mentioned "friends" ....I find that none of my friends will let me talk about it seriously. They just want to say You'll be fine"...and "oh, the test will come back with good results"...
Hi John. I feel pretty much same way. When people find out i have prostate cancer they say i'm lucky lol. They say that's the cancer that can be cured. I have tried to explain that i have stage 4 with mets and no cure. There response is when will you be cured. I used to get angry . I also can't find support group. I live near philadelphia no support group also i spend alot of time at my condo in Naples fla no support group. But there are 15 support groups in phila area for breast cancer and 3 in Naples area. Now i think it's wonderful that are places for Breast cancer but what about us. Doing good in my treatment but who knows how long this will last. Just wish there was more attention and resources for advanced prostate cancer . Anyway going enjoy everyday just booked 3 weeks in England and Ireland to visit relatives. Last thing thank god i'm married to my best friend and love. She is so supportive but i get deeply depressed about ED . Take care John all the best.
thanks...your reply was almost as good as a HUG! it feels good to know that I'm not the only one with friends who "don't get it" and obviously haven't done the research....I've explained what Lupron is...CASTRATION...and they still act like everything is "o.k." ~~when I get back from my second opinion trip to Tampa...I might try to pull the "energy" from somewhere (the ether) and try to hustle to try and get a support group here in Ft. Lauderdale...even if it's only 5 or 6 guys...I feel it could be helpful !
**and luckily, I'm still with my partner (of 40 years) and he understands better than most..he had prostate cancer 6 years ago..with MUCH better results...his PSA is still almost undetecable ...and he is NOT on Lupron! I think he realizes how lucky he is now! he started out with a Gleason 7...and I had a Gleason 6. Who'd have thunk? LOL.
absolutely...my "best" friend doesn't even come for a visit...I thought for sure when I announced (on Facebook) that I had stage 4...he'd be over the next day with a hug and some time to spend (he's retired)...but, alas, he manages to call me a couple of times a week.....and NO ONE wants to hear anything except "happy" stuff..so they won't let me talk about pain, or fears....or anything important. I have LOTS of stuff...I collected (as an antiques dealer) and my things ....really do bring me so much pleasure. When I'm feeling really bad...I look over at a 18th century lowboy that has a lamp that I love...and an antique figure of an owl that I love...and these "things" are more with me than any of my (very long term) friends.....and although they say "things" don't bring you pleasure...in MY case they are so wrong. When I don't feel like going "out"..I stay in and enjoy my "stuff" and my puppy and my partner....for those who think your friends will be there for you~~~~forget about it! Me on the other hand, when I found out a long time friend had PMP cancer...VERY RARE. I immediately went to work researching it...and found that the Moffitt center had people doing some treatment...he was going to Mt. Sinai in Miami...I told him to contact them...he did..and they connected him to a doctor that did an amazing surgery (only 2 people in the country treat this cancer)...he's now NOT doing chemo...and enjoying life...his local doctor had told him "you're old...you'll be dead soon"...the new doctor ....after surgery said come back in 5 or 6 years....OR if you feel bad. What a difference! No one I know has researched much about what I have....they really don't "get it".
We lived in Fort Myers for a while and there was no support group either. However, Jan Manarite just hosted a prostate cancer seminar in W Palm Beach. You may want to get on her email list as she is an excellent Florida resource who lives in Fort Myers.
Everything you say is true. Had my 5th docetaxel infusion Monday, and not feeling great right now, aches, chills, tired. Doesn’t help that I was also feeling sorry for myself. Your post made me realize that the psychological aspects of this disease are ignored even more than the physical aspects have been in the past. I think that part is rapidly changing now.
Anyway, we are mostly left to deal with the fear, anxiety, uncertainty, loss of confidence... on our own. So let’s do that! That’s what courage is and that’s what men do. We play the hand God deals us, we persevere, we suffer silently, and sometimes we win.
So you inspired me to get up off my dead a— and Do something productive this afternoon, no matter how exhausted I feel. It certainly would be great to have more support and understanding from society, but the greatest support we can get comes from within ourselves.
I have learned that!... and I have learned that I am amazing!...LOL... So glad that I inspired you to get moving ... I have been stuck on the phone all day trying to get a oncologist referral straightened out before a 9:00 a.m. appointment tomorrow morning... Which is super important because I have a follow up on Monday at another hospital across the state.🤔
Dan...every port was more beautiful than the last...and they all run together...we were on a 17 day Mediterranean Cruise...lots of ports in Greece, then Italy...and some islands...and then to Barcelona. I think this was in Greece. This cruise was a "bucket list" kind of thing...been wanting to go for a long time! It was great.
Thanks John, i love the Med. wife and I just planned Port Isaac and Penzance in Corwall for June, then up to see the Stones in London. Most Important to keep living Life with this Disease.Make the most of every day, In a way it is a positive about this disease, It makes you get to work with the bucket list. “Get busy living , or get busy dying”
Thanks for the reply, The Wife says Greek Island is the best, I have never been , But had a Great Time in Portugal last year, Beautiful , Cheap to live , they love to have us, and the food is the absolute best, a bottle of wine is $2
hmmm. GREAT. Portugal is "still" on my bucket list...LOL..
for now... I'm hoping that any new treatment that my latest Petscan indicates will not mess up our plans for 3 weeks in England, Ireland and Scotland in August ! ! ! I
Had to reply as I’m from UK Cornwall is a great place to visit in summer and port Issac is good choice and there are many such small sea ports and amazing beach coves in the area also near by is Devon try Dartmouth, Salmouth and south Hams and great to get on the moors if your into walking. By the stones I presume you mean Stonehenge I grew up near there and use to play on and around the stones but now all you can do is walk round them. They are on the way to London. London is a great city and has such a buzz Natural history and Sciece museums not to be missed and free. Don’t even think of driving in London like NY leave it to the Taxi drivers.
The Greek islands are fantastic to visit and relax or Rome and Naples a must for culture. Hope you enjoy your European Holiday.
For a taste of Cornwall watch a tv programme called Doc Martin if you get it there
John, the last Mediterranean cruise I took was on the USS Saratoga. I was a civilian tech rep (field engineer) supporting Avionics test equipment. And yes, it was a great cruise. That was a long time ago.
yes...and I just sent the guy an email and it came back "undeliverable"...oy! I will try to give him a call tomorrow...if I have time. Oncologist and test results and more blood being drawn tomorrow...
It's only about 20 miles from me...so if they still exist, it will be good. Thanks so much ! !
Great! I'm really glad. It's so helpful to be in a support group. That's the first time for me that I did not feel alone.
There are also phone numbers of people that you could call and they might know of other groups not listed here. I know a lot of these are not close to where you live, but the people in the groups may have information to help you.
yes, Daryl the administrator of this group found the closet one he could find...in West Palm Beach...about an hour + away. It seems shocking that there is nothing closer. Thanks again, for all your help.
Let us know how your appt. With Moffitt is going. My brother just got accepted into a clinical trial at Moffitt .He has Gleason 8 PSA is >2500 and has spread to all bones except legs. The great news In all this hell is that the scans showed it at least has not spread to his organs. he had Lupron shot and started Casidex pill about 4 weeks ago. I am going to keep an eye on symptoms of depression, he’s been very quiet and not expressing any feeling.
do keep an eye on him...the "strong silent" ones can be suffering more than you know! He (and you) will be in my thoughts. I will post what my Oncologist here (Sylvester) and what the oncologist at Moffitt recommend for me. I'm curious what it will be...."every day is a winding road". ~~John
Despite the high PSA, his cancer is still very treatable. I know someone on this forum that had a PSA of 5006 at diagnosis and has been going strong for over 4 years now. His current PSA is 1.7. 80-90% of stage 4 prosate cancer patients respond well to first line ADT so I wish the best for him.
Go on that cruise!!! We have a 14 day cruise booked for June and another in Oct. My husband was diagnosed with a recurrence of his prostate cancer Dec. 6th. During the last 3 months, the only time I have not obsessed about prostate cancer was the 7 days we were on a Caribbean cruise, And I met a man, on that cruise, who was 52, and has been living with liver cancer for 5 years. He looked so good, we almost didn’t believe him,. until, his brother confirmed it. His first doctor gave him 6 months to live. I have come to the decision that life is meant to be enjoyed, we do the best we can and carry on. As a RN of 49 years, now, I can honestly say that doctors do not know everything and the power of hope changes much. Enjoy your cruise.
THANKS Wayneswife! ! ! I plan to go unless they have me on some kind of weird treatment that won't allow 3 weeks away....actually doing a "land package" this time...of England, Scotland and Ireland...figured it would be a better way of seeing the countryside!
You have a great point, John. Us, women and the caregivers, cheerleaders and in our case, the researcher, need to get some momentum going behind the prostate cancer movement. There are many, many women, like me, in women only prostate cancer support groups. They would likely crucify me but Imust might challenge all of us, into fighting for the cause. As a caregiver, it is the most stressful thing I have ever been through but keeping busy, after this latest upset calms down, will be a good thing. We have two sons, and 8 nephews. The 3 men in our family, all in their 50’s all had prostate cancer. Education and awareness is the way to reduce its power. I could use some ideas. My 38 year old son, despite having his father, grandfather, 3 uncles and 1 great uncle all with prostate cancer, is fighting me tooth and nail. He says, “ I’m not letting any doctor stick his finger up my ass.” If you know me, you’d likely know what I said but I don’t want to appear heartless. I just can’t get through to him. At 38, he believes it just won’t happen to him.
sounds like he needs his 38 year old "head" examined...first! Something's wrong there. He should at least be doing a yearly P.S.A. to get a baseline...keep at him!
I've threatened to drag him but ill drag my husband, who can drag him. He thinks he's invisible. Watched his grandmother suffer and die from copd..emphysema from smoking. He still smokes.
Show him this: my PSA was very normal at 2.7. It was only the DRE (fickle finger) test that revealed the prostate tumor. I was very lucky to be diagnosed and treated early in the disease progression. I count my lucky stars to have been given that exam and in fact I had to insist upon it. It took three visits to this new doctor to get it done. Patients aren't the only ones who aren't thrilled with this test. It can save a life and it can save someone from very, very expensive treatments, especially if one is prone to develop this disease at a young age, and not yet eligible for Medicare. Some of those drugs can be thousands a month. I hope he gets "scared straight" on this subject.
Go on the cruise and plan another one! I firmly believe in LIVING despite the beast. I’m almost 11 years in and currently 54 yo. Travel is important to me and my husband, so we keep doing it. I am having to make some concessions lately—more down time, no adventure travel, admitting when I get tired, buying more trip cancellation insurance—but we’re still seeing new places. I’ve also learned that with some treatments (I’m currently on Xofigo), the treatment schedule itself can be flexible. Some day I’ll have to stop—but not today.
Amen. I was determined that what happened to my father and mother , would not happen to my husband and I. My parents lived their entire lives, killing themselves with work, postponing their joy until retirement. My brilliant businessman father started showing signs of Alzhheimers at age 60. Retirement was forced upon him at age 62. It was a progressive downhill decline until his death 14 years later. No such life for us, I thought. My husband retired June 15, 2017,at age 65. Dec. 6th, he was diagnosed with recurrent prostate ca. I am taking early retirement now and we are going to travel and live our lives to the fullest. I, of course, will retire from managing the health care of my patients and take over the management of his, which in the current health care milleau, requires nearly full time attention. No guarantees for tomorrow. Do what makes your heart happy.
Before moving to Asheville, I lived in a small place where a much older guy had started "The Lunch Bunch". For men only. Mostly retirees turned up. A local resaurant had set aside a table (Mon-Fri) where any man in the county could turn up & chat about anything over lunch. Generally 6-8 turned up on any day; different mix from day to day. Half the men had PCa. Was very successful.
You could get the word out locally that you would have a table in a certain restaurant on a particular day, for a number of weeks. Any man with PCa welcome. See who turned up.
Welcome , I for one wish I had found this sit a year ago, diagnosed Aug,4-16 stage 4 met in rib cage,lymph nodes and back bones. Have a good do and nurse practitioner but as you say when you say your have a problem then they might say oh ya or I dont know. Every time I pick up something or have a rough day ribs hurt. I worry about the cancer spreading. Or. Yes forgot. 6 rounds of chemo, lupron and Xgeva shot monthly. Fingers hurt awful in the am, depression was bad until doc put me on Effexor that’s better. Most of all reading about my fellow prostate patients has helped a bunch. Larry
and ...like I say...there are almost no "local" support groups...but it does feel good to be able to hear that someone else has the same pain...and it's NOT the cancer going to your ribs, ...or wherever...I mentioned it to the doctor's PA today and she said...yes, the Lupron will call that. I looked all over the office and there were tons of things about Breast Cancer groups and wig giveaways...but NOTHING about prostate cancer support. I'm actually meeting with a local person I met on here..who's nearby. I might try to get a local group started ! ! !
Yep , same here, have been looking for a PCs bracelet or something but have found nothing. Hang in there. Men just don’t talk well about there manhood issues
One of the first things I did was look around for a local support group. I found out that there used to be one but now it is defunct. I had to interrupt my typing -- the phone rang -- someone asking for a donation for Breast Cancer research. I can't make this up. So, I know that pink ribbons are to focus attention on Breast Cancer and, I think, blue ribbons are for Prostate Cancer. So when do we see football players wearing blue? Football players are all male and all are at risk, with black players being at higher risk. Many football coaches have dealt with PC and yet the NFL doesn't seem to promote PC research to the same extent as BC research. BTW, I often hear my wife on the phone saying "Oh, he's doing great".
well...like someone earlier said..."we're suppose to be strong and silent and take it like a man." say WHAT ! ! ! ~~when someone asks me how I feel..I tell them EXACTLY. Nothing about this is easy...I am going to try to see about starting a group locally. I am actually meeting with someone from here next week...who's very close by...to chat and have coffee...and maybe a hug. I think a hug from someone who knows what "castration" feels like will have more meaning ! ! ! Until Men become more VERBAL and even AGGRESSIVE about it...Prostate Cancer will stay an almost invisible killer. You're right regarding the NFL...they should REALLY get behind prostate cancer research, cures...and prevention by early testing!
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There was a PC support group in “ fight club” with brad pit, very funny , meatloaf had giant knockers and couldn’t quit crying. I’m not quite up to meatloaf yet . But I’m working on it...
I’m lucky to have a local group to go to. We meet every two months have a speaker and a general chat. I have found that and this web site a huge source of advice and my current diet and exercise regime is all thanks to you guys and the local group. I am in the U.K. dx 2014 psa 180 now steady for 2 years at 7 mets to pelvis and just one on back no chemo yet.
Even within the group there can be a reluctance to talk about the personal details and as you say outside the group there does seem to be a attitude that as it is prostate it will be cured - I wish. It probablaly boils down to just a hand full of people it is possible to have a meaningful discussion with and amazingly I have friends who have prostate cancer that shuffle of in embaressment when subject comes up.
The first 12 months after Dx was like living under a dark cloud but after that in part due to my wife’s up beat attitude a acceptance has crept in along with a re born approach to life. Ok good chance I will die from PC so what I’m 70 and something is gonna get me.
The worst thing we can do in my opinion is to bottle it up and keep it to oneself. Take a leaf from ladies book and talk about it to anyone who will listen
Reborn approach to life. I like that.. we must re -think and re adjust accordingly if we expect to live along side APC .I also benifit greatly due to my wife’s attitude and love. Thank god for women.. we can learn much from the feminine persuasion..
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