Today is one of those dates a person remembers but really doesn't want to remember - it was 2 years ago today when my urologist's nurse called me to say "you have mets. I'm sorry". those two small sentences are burned into my memory, i can remember exactly where i was, what direction i was facing, what i was looking at, what time it was. Was a wonderful warm fall late afternoon- not the kind of day for bad news. it wasn't a complete shock since the bone scan tech burned me a CD of the scan the day before and i had already seen all the black marks on the image of my skeleton. I went from dreading the upcoming prostatectomy, to worrying about what my kids would do without a dad.
so here I am two years later, looking at starting Provenge Oct 31, because ADT and chemo (and radiation to the prostate as part of a clinical trial) didn't keep the PSA down very long. those treatments got me to undetectable, but i was only there for a year. so, still worried that my 10 year old won't have a dad sitting by her mom when she gets her high school diploma, wondering if my 13 year old will have to get her Eagle Scout requirements accomplished without my help, and wondering if she will also only have one parent at her high school graduation party.
The 13 year old plays YMCA soccer; her team scrimmaged their parents Tuesday night at practice. i think we all enjoyed it, i don't know how many other parents are stiff and sore today, but i sure am. the running back and forth wasn't too bad, but all those little muscles that help turning and twisting and maintaining balance, those that don't get used as much, the ones probably wasting away more than the big muscles used all the time, they are certainly complaining. pretty sure i was at least 15 years older than any other parent out there, and definitely the heaviest. at least the kids didn't totally beat us old people, it was a 2-2 tie.
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Tonwantonga
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My Dx was 16 months ago. It was a complete shock - I’m on vacation with my family in Hawaii and the next week I’m having surgery to remove a tumor from my spine.
One of my friends said “Nobody has an expiration date tattooed to the bottom of their foot”. I think of that often.
Another friend’s son is in the hospital now with a brain aneurysm - he’s 26 - go figure.
I’ll go when I’m supposed to…not before…not after.
I think we all remember the phone call— mine was from Dr Bahn almost four years ago— hearing the first word out of his mouth “Unfortunately” it felt like a four pound sledgehammer to the head, then the word “adenocarcinoma”, sounded so surreal— it was hard to get my head around it. It’s a tough blow to anyone.
Good to have made it 2 years. Some have been here and not responded to treatment at all. I cant stand to think of what it would be like to be you with this at a young age.
If you have kids 10 and 13 you must be young(ish). My thoughts are with you. I have grandkids 5 and 7 and I was thinking the other day as mature as 7 year old granddaughter has become (8 yrs old in a few months) maybe she should be told of my dx. But maybe not. Not yet. For now my condition(s) can be passed off as "just an old grandpa" They never saw me during my first chemo 3 years ago but this time with chemo starting next week they might since we moved close to them a couple years ago. I don't know how you cope with it having kids at home.
I'm just coming up on 3 years. I went to a personal physician. I thought I had stomach cancer. He feeling the lymph nodes around my collar bones thought I had lung cancer.
The next day I missed some frantic calls (voicemails) to call the clinic. Then same thing coming from Urology clinic. Call now!
I noticed new info in "my chart" and there was PSA of 1600. Looking that up on the internet was not a good idea not to mention I could only find examples of men who died rapidly with PSA of 550. I was hoping the measure was a different scale so looked again --no 1600 using the ng/l measure common to all PSA's. Later the scans. Are the white spots the cancer? No dummy you wish, those few white spots are the normal areas, remember your days as a hospital corpsman? I couldn't believe what I was seeing.
I do hope that you continue to have many "anniversaries" time to share with your children. There are still some treatments in the "hip pocket" for you down the pike. Best of luck with Provenge. If you have extensive bone mets (or not) it might be synergistically beneficial with Xofigo.
Youngish is a relative term. I am 57. my wife and i had kids later, and she just turned 50. i kind of feel like i was 40 for 15 years, and then I have aged 20 or more years in the last two. I never knew anything about depression until my lowered T made me depressed, and i didn't know prostate cancer could metastasize to other parts of the body, until i had that bone scan. never looked that deep into prostate cancer before i had it. my dad had prostate cancer, had the seeds implanted, the grandkids couldn't sit on his lap for two years, and then he was better. my granddad had his prostate removed back in the 80s, i didn't really know about that until a few years ago. my dad's oldest brother had prostate cancer, had radiation, was good for many years, now in his mid 80s and is getting 'those woman's shots' (Eligard, same as me). if i was in my 80s, maybe this wouldn't seem as bad, but, i was still using those parts that don't work now.
I was moved by your post. You have too much to live for, too much left to experience, and too much to offer to be battling such a tenacious opponent. You are remarkable for keeping goinging forward, for continuing to put your family first, and to being a "normal" dad when your body is struggling. I pray that you are not only there for the eagle scout ceremony, but for your youngest's graduation, and for a long time after that.
Wow, your story about finding out about your diagnosis brings back a lot of memories. Like you, its been two years since I got the C word - but I received the news in stages.
#1) During my 6th rectal exam in 8 months, the DR. said, "That feels a little abnormal, we should schedule a scan, Your prostate feels enlarge and spongy, there is a chance it could be cancer".
#2) During the scan the urologist indicated that the disfigurement of my prostate was cancer and, if so, we would need to schedule a biopsy.
#3) The biopsy results showed up on line, Gleason 9's in there. Left a phone message for my urologist. I was told by my provider that I was stage 2, the next day he called and told me I was stage 3 and he had scheduled me for some scans.
#4) The scans were scheduled for that week, at two different facitilities. Never had tests scheduled so quickly, but they said they needed to get me in as soon as possible. Never a good sign, but glad it happened. Before I got home from the MRI they had called to schedule follow up scans for two days later. Definitely not encouraging.
5) Like Pickleball, I saw the scan results on line. They showed cancer in the prostate and lymph glands, but also a spot on my lung. I didn't get any contact from any of my medical providers.
6 &7) Left another phone message for my urologist. When we connected he told me that I was STAGE IV with distant mets. He directed me to go directly to the pharmacy to pick up a prescription for Casodex and start it immediately (don't wait until tomorrow. You will meet with your new oncologist in 2 weeks, but statistically you have 18mos to 2 years to live.
At 67 my female urologist did the dre and it hurt because of lumpy prostate. She told me about the lumps. Also my psa was 20.6, was told this 3 weeks before so I knew my fate and diagnosis. She has since left the area and my MO is my lead. She is very good with me and knowlegable. My point is that I forget the actual day of diagnosis but I do remember that my PC is the one that ordered the psa test that saved my life.
Hey I appreciate your story, this month is 2 years for me as well. I have similar Stage IV, but no Bone detection. Did all the same treatments. I have the same thoughts as my daughter is almost 15. They say in the end all that matters is who you love and who loves you. We’re going to make the most of our time. We never know when it will end. There’s so many great therapies on the market and more coming as we tried this road of prostate cancer, wishing you the best and all my other prostate cancer friends as well. Enjoy life today. Don’t wait for tomorrow.
We are standing with you, your council of brothers, Tonwantonga. We want to see you there for the elder child’s graduation and the younger’s Eagle Scout induction. And more. The Provenge is indeed very good. And you have more arrows to use. Are you on a bone protecting regimen? There is Ra223, Xofigo which is synergistic with the Provenge. If you go on Zometa or Xgeva for bones, adding celecoxib is helpful in combination. And you have BAT trials and Pluvicto (Lu-PSMA) in reserve. Stay strong and persevere. We know you will, on eagle’s wings. Paul, aka Whitefeather aka MateoBeach
i'm taking calcium and boron supplements for my bones, last DEXA showed i was still pretty solid in the bone department. when i need a 'bone boost' i'm sure my MO will prescribe one of the treatments you mentioned.
BAT seems pretty interesting, wouldn't mind having some T at least one more time before the fat lady sings. my doc seemed pretty excited about Pluvicto 2 visits ago, so we might see that down the road somewhere.
I hope, you, me, and the rest of the guys here on the forum hang about long enough to see a dozen of more treatments come to fruition.
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A lil levity for HU and an update after Cabazitaxel #11. In 2001 my daughter and I were in "Friends" episode"The one with Monica's Boots"
8 years since dx, doing well ...
My father has metastasized prostate cancer. What are the odds with chemo?
Xtandi
