does anyone know of an online (zoom?) support group for younger men w/advanced PCa? my husband would really like to connect with younger guys who are going through the same thing- he's never been an online "forum" person, so he hasn't joined here (even though i keep telling him to). but he's on a zoom call for business every 5 minutes, so i know he'd love that format.
in real life, we know a handful of older men going through this (or who've been through it & are in remission), but it's hard for him to relate to their lives as most of them are at the end of their careers or completely retired & don't have little kids at home (homeschooling during the pandemic!) etc. i think he'd really like to talk to guys at this mid-life junction who might also be struggling w/SOME of the same things besides just PCa. make sense?
anyone know of a virtual call like this?
finally- just want to say THANK YOU to this group for letting women on this site. it's a GIFT. i feel more at home here than any women's group i've joined for PCa b/c my interest lies in the research/meat of this disease, so i don't always relate to the posts on the womens' forums. thank you for welcoming us, and encouraging us & not being dismissive of our voices. it means the world.
xx
ps. yes i've attached a pic of my cute hubby & yes he would die if he knew it. ha!
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pwallace
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Hi p. My wife Alana has met you on line. She has been my advocate on this forum and others. I’m 68 today and was diagnosed stage IV metastatic this past March. I cannot relate to your husbands situation age-wise, as I am older and we have no children, but I’m sure I share some of his same anxieties. I’m receiving treatment at Moffitt Cancer Center in Tampa. They offer a weekly zoom call open to all cancer types of any age. Of course this is for Moffitt patients only, but it might be worth checking with your local treatment facility for a similar forum. I also have. That one is confined to aPc patients but is not age limited. Statistically speaking, I’m thinking there are a limited number of men in your husband’s age group with aPc. Unfortunately that makes it difficult to find a peer-age support group. If I do run across one I will certainly pass it on. In the meantime please let your husband know that I and others on this forum offer our support in his struggle to fight against this decease. We all continue to root for each other. The best to you both as you continue your journey.
hi steve! your wife is so lovely & kind. so glad to connect with you both. that's a good idea about the cancer treatment center- we'll look into that. currently he's w/cleveland clinic, but we're also working w/an oncologist on the west coat. will try both places. he's more of a talker, and less of a writer, so i know he would appreciate the zoom calls. so sorry about your (somewhat) recent diagnosis. one thing i've learned is that it's hard no matter what your age is- it affects us all deeply. thanks again for your response. hi to alana! ❤️
About 7 years ago, at age 53 was diagnosed with non-metastatic prostate cancer. I did not start ADT treatment, wanted to enjoy the faculties a bit more in life. Then at age 58+, a large tumor grew out from the prostate gland invading the bladder wall (PSA 1000+), time for immediate ADT!
With a few weeks after ADT, scans showed significant necrosis findings, no symptoms. Latest PSA <0.02, so my PCa is very hormone sensitive, lucky me, well sort of....
My point, get all the information you can get here, then apply it to your own individuality, trying to match your PCa to others is futile...
thanks for sharing your story, and that's amazing that you've responded so well to ADT! hopefully you'll be one of the lucky ones who will respond forevermore! as for matching PCa, no, no, that's not what he's trying to do. he just wants to meet w/younger guys going through cancer at mid-life via zoom- he's not much of a forum/blog person! thanks again for writing.
hi AJ! thanks for your response, updated my bio w/all the information. and yes will absolutely try to get him on here. will never stop trying. i truly believe you're right that the more you engage, the better off you'll be! i've read about those who go through treatment in a passive manner & how they don't fare as well. really do believe it. thanks again.
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I posted a review now! ”Healthunlocked was the only online forum that really helped me when my father was diagnosed with recurrent advanced prostate cancer. I’m from Scandinavia and found that people from all over the would sought this forum for a good reason. The help in finding valuable information and emotional support is unique, I’m forever thankful.”
Me too, dx last year age 56, now 57. 13 year old son we adopted 10 years ago. Wife a few years younger, married 27 years. I had a lot of emotions after being diagnosed. My family not having me around maybe the hardest and still working on it.
truly think it's the hardest part for my husband. thinking about those kiddos. every time we get scary news, his thoughts go right to them. our youngest just finished kindergarten! hopefully we'll all be lucky & one day all of this will be behind us & we'll be worrying about the grandchildren! until then... love to ALL of you.
Our job, for all of us, is to hang on and fight this decease until there’s a miracle cure. No one knows when that will happen but the scientists are making progress every day with every new trial. It may come tomorrow or it may come in ten years but my belief is it will be sooner than later.
we're trying to have the same mindset! although some days are definitely harder than others (as i'm sure you know). xx
Great idea . Unfortunately there are way too many . Tell him to join us old guys here. I’m now 59 .. We can lead him thru it with the truth. So much love he has . Possibly you can start up a group. Why not? The only ones that know what you two are going they are others in the same mode . My wife is doing zoom yoga and our daughter is teaching It that way.. 🙏😷
thanks scott, maybe i'll tell him to start a zoom group if he can't find one that works! he won't know what he's doing, but who cares- he just wants to find an outlet with people who "get it" - wowza zoom yoga, you should join them! namaste!
My heart always breaks when I see guys your age with PCa, but there are lot of us here that aren't that much older.
I think the common bond we share here really transcends age and I think you'll see that if you participate in the forum.
I hope you can find the support and comfort you need with other men that share your situation. We are all brothers in this fight. I'm glad you are with us.
aw thanks so much for your kind note. i just read it to him! i'll definitely keep participating, he's just not much of a typer- he's the talker, on the phone & zoom all day. i was looking for a soft place he could land in re: to this dreadful disease.
i love the bonds that i see on this site, you really are brothers in arms.
i only wish i could see all of your faces & know all of your names (bc i'm nosy like that). 😂
we lived in los angeles for nearly 2 decades, so we're hoping to move back to the same area (although maybe a bit further out?)- we'll see. my husband is a surfer & he misses the water tremendously!
Thanks Stevana! She’s one foxy Moma . I give thanks for her being mine brother .. I was a lifetime bachelor before she gave her love to me . This love has saved my life . A reason for living . 😎✌️
adorable!!! glad you have the love of your life with you on this journey! (btw- what can i say besides journey- path? road? something has to be better- ha!) scott, you're the best.
Hello pwallace, I do not know of any zoom groups for younger guys with pc that are in remission and if your husband ever wants to talk to someone I am willing anytime. I was diagnosed at 45. Now 47 and rising PSA after proton beam radiation. It's a lot to handle with work and family while fighting pc. I have a 4 year old and 12 year old which is the best reason in the world to keep a positive mindset and live life to the very best every day.
It is great that he has you looking for him to find guys to talk to that are his age group.
hate that you're also dealing with this at such a young age. hopefully you'll knock it out w/your next round of treatment. so disappointing when PSA starts rising again- i'd argue that it hurts worse the second and third time around etc.
I am unaware of any on an international scale, probably due to the logistics and management issues alone.
Your idea is really what most areas used to conduct as in-person support groups. The local one that I am familiar with is now held online as a virtual meeting once per month and you have to sign up in advance, as the slots are limited. However, it has all age groups in it.
If you can get someone to facilitate it (i.e. a Licensed social worker or licensed clinical psychologist), your husband can probably work with them to start one for that demographic in your area. The issue with any kind of forum, especially live interaction in-person or on Zoom is that they tend to require guidance through a moderator, so as to avoid individuals monopolizing conversations or people going outside the intended topics and it losing it's benefit to the group.
Malecare started a support network called Prostate Cancer Under 50 in the mid 2000’s. I believe it is the first of its kind. Guys diagnosed in their fifties participate too.
As in how many participate in a zoom meeting at once to allow everyone a chance to speak? My experience is that Zoom meetings are only effective when the number of participants is limited. If not, how does it work?
yes exactly- in person support would be great, but for now zoom will definitely do the job. i agree w/moderators- so important to avoid one person taking up all the space. thanks for writing.
I was diagnosed at 53 years old...I’m now 56. I have twin 7 year old kids and two older daughters; I’m also very lucky to have an absolutely fantastic wife who happens to be 14 years younger than me.
That said, I have been living with mcrpc and all the challenges the various treatments have created...living a post RP life with ADT and a little chemo and radiation thrown in for good measure definitely changed my life....Especially when there’s really no end in sight. I would be honored to zoom with your husband. PM me if he’s interested.
thanks for this, really appreciate it. will let him know. and yes, you absolutely get it- 4 kids! wow! and two 7 year olds! by the way- 7 is my favorite age. they're so innocent & sweet at that age & still saying the funniest things. our (almost) 7 year old just told me that he had a mosquito bite in his legpit (leg armpit- the area behind his knee)- i mean, what else would you call that as a 7 year old!?!? 😂😂😂
I was diagnosed 8 months ago with stage 4 metastatic prostate cancer at the age of 45.. Now just turned 46.. I have three kids of 5, 9 and 10 years (4, 8 and 10 at the time of diagnosis).. I am Danish and live in Denmark, so I don't know if that's of any interest for you and/or your husband?
Btw, I am using a danish facebook forum called "The young prostate guys" (however, I am the youngest there and not many really have small kids and that is also all kinds of stages of the cancer)... However - I am very happy to be part of such a forum, but also use this one as there are more in the 40's here and this only deals with advanced PCa as well..
You're welcome to write and ask about more or less anything.... All the best...
yes i've noticed this forum has a lot of young guys from all over the world w/so much valuable information to share- i much prefer it to the facebook groups. and i'll pass your info along to my husband- thank you, really appreciate it. so not fair to be dealing w/this EVER but especially at such a young age. our kids are 6, 9, & 12. so awful, i'm sorry "you get it" but i'm also glad we're not alone.
I’m not sure about zoom but I can relate. My kids are not as young but still young 15, 10, and 10 (yes twins )at my diagnosis when I was 46 two years ago. I’m a single parent. I have a loving family supporting me ( mom, Dad, brothers) but it’s just me in the house with the kids. Their mom has been helpful though she has her issues. I couldn’t be doing anything without strength from the One above. God willing I’m still working, active and L-I-V-I-N one day at a time. It can be a scary place on this “island” I’m living on as no one I know can really relate. We’ve spent the last year dealing with extreme emotional and mental issues with my son who is working with ABA in home therapy to deal with his autism spectrum disorder. The biggest fight can be in our minds, will I see my kids graduate, get married, become parents, what shape will I be in???? Or here??? All things us “younger” cancer patients ponder. Feel free to message me or have your husband do the same. Prayers to you and your family!
will do, thanks so much for this. really relate to your words here- one of our kiddos has special needs & that alone is a full time job. will private message you about this b/c i don't think anyone gets how hard this can be in & of itself. and then dealing with prostate cancer on top of it! oh and then throw in a global pandemic for good measure! ahhhhhh! i hear you on the biggest fight is in our minds, though. we're trying to meditate & not become too attached to our worries, but it's nearly impossible some days. so much love your way. will write soon.
Ok.... I'll take the 3 foot woman with the flat head and is a deaf mute who owns a liquor store and is heavily invested in Apple stock and has only one sibling and no other relatives. The sibling is a 5'7" Blonde female that looks like Bo Derek in her heyday (and she adores me).
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 08/03/2020 9:12 AM DST
Great idea for a post . You are on it! You guys are far from being alone on this quest .. ✌️
Hello Summer.... I went back and saw that picture and your post from March 2019. I saw that picture of the kids when they weren't hiding their faces..... but they are a cute bunch.
Well I'm no longer in my 40's but as I said above I still think like a 16 year old. I saw that Pca runs rampant in both your families. You must be pro active in your/his fight against those ugly little cancer bastards. Take care of yourself and the boss and get the hell out of Ohio..
But what the hell did Doris Day know?
TO HEAR THE VIDEO JUST CLICK ON THE NAME OF THE TOP OF THE VIDEO
omg this made me smile so big- thanks for sharing. i know you're all about the humor, john, but you have such a big heart. i see it in so many of your posts. you care deeply about others & it shows! thank you for making my day w/this. and yes, we have prostate cancer coming out of our ears over here- both sides! feel like i need to get my kids tested when they're 20! aye aye aye.
Thank you for your kind words.... I showed your post to my wife and she fainted..... I panicked and tried giving her mouth to mouth resuscitation and she fainted again....
Doris Day in her hayday. Wait hay is for horses. And her son, Terry Melcher, made Charlie Manson so mad, he started having people killed. It's a small world after all.
Hey Monte let me set the record straight....Terry Melcher met with Charles Manson, and my ex-wife....The word PIG that they scrawled on walls was meant to describe my ex-wife...
I’m 49 and now stage 4. First diagnosed at 40. I’ve looked through a lot of sites in my search for information to understand what’s happening to me. What I’ve found in this community, that regardless of age, there is a wealth of info, welcome and acceptance. Many of the chaps on here have been through their 40s with the beast. Those older give me the benefit of their life experiences. It’s like having a bunch of different uncles and dads - which I am grateful for. Lost my dad 35 years ago. I have a 12 yo son.
What I’d say is spread yourself across this forum AND the younger one and try to look for the themes relevant to you right now. You can’t digest everything and not everything is worth digesting. As you learn you will narrow down what and who suits your advice needs. Perhaps your other half would be open to reading a particular thread of interest as a starter for 10 - may open a door to him dipping in a bit more. I have found this forum in particular, across all of internet world, to be the most valuable. And the FB prostate cancer latest research a happy bedfellow.
I’d be happy to chat in a relaxed fashion with you guys if you think that would help at all. I’m no expert but then none of us are, even here!
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