Spend as much time with Dad as you can. Try to get a family tree from him. After Daddy died, I joined Ancestry.com and built my family tree as best I could. It was very comforting to me.
Ask him to repeat all the stories you heard growing up. What was it like when he was a kid, what kind of stories did HIS father tell? I established a blog, and I’m trying to put down as many of those types of stories, as a legacy to my children.
And finally, you and your sister need to talk to Dad about what he’d like for his final plans. This won’t be pleasant, but it will make things a HELLUVA lot easier when the time comes.
My father, for all his organization and preparation, had NOTHING set up. We managed to muddle through everything, but my sister and I should have been wearing matching t-shirts that said “Discombobulated.” When we were chasing down money and bills and paperwork, I told my sister that I remembered Daddy mentioning he had a paid up VGLI policy. She had never heard anything about it. Sis works for an insurance company, and one of the reps does nothing but track down government insurance. She gave him Daddy’s name and Social Security number, and the rep comes back to her and says, “Yep, your dad definitely had a policy! Here’s the paperwork you and your sister need to fill out!”
Sis and I not only got to split the $10,000 proceeds, but we received a very nice letter from the Department of Veterans Affairs, expressing condolences as the death of our father.
Enjoy your dad. The memories you make with him today will be a true comfort to you later on.
~VOW
Nice ideas, VOW. Happily, my Mom is still around and healthy. She’s definitely the organized one of the two, so I suspect she already knows his wishes. I will, however, make sure.
Now that I think about it, I do have copies of both of their wills. However, I don’t know how either of them want to be buried/burned/launched into space.
-D/a
I missed this thread the first time around, but I am reading it with greater appreciation than I might have otherwise. I am having a biopsy done on Wednesday.
Thanks, Roddy. That’s actually one of the reasons I post the updates. Other people are going to go through this. When Dad was diagnosed, I spent a lot of time reading past threads here, and elsewhere.
If you don’t mind sharing, what triggered your biopsy? I assume an elevated PSA?
Dad said the biopsy itself wasn’t bad.
You may want to familiarize yourself with Gleason scores - if they find cancer, they take the two most aggressive forms and rate them from 1 to 5, with 5 being the most aggressive. Add those two numbers together, and you get your Gleason score. Both the total and the individual numbers are useful indications.
With luck, they’ll find nothing, or at least the more standard, non-aggressive types.
Feel free to post in this thread, or PM me, if you’d like to discuss any more.
Good luck!
-D/a
Digital, I appreciate your willingness to share this kind of information. Yes, my biopsy was triggered by rising PSA numbers. My PCP raised the flag at my annual physical, almost a year ago, and three “let’s make sure” tests later under consultation with a urologist, and the number has gone up another point (now over 5) since then. The urologist is almost apologetic about going by PSA scores, but I think because I’m only 62 he thinks it’s better to get the most accurate information.
My sister asked me how was my peace of mind, considering all the possibilities. I said what I think is the truth - I’m ok at this point. I’m not freaking out. There are a lot of possibilities, most of which are outcomes that I could live with.
When I was a kid, my father used to say “Don’t cry until you’ve been hurt.” I’m trying to live by that now.
Roddy
The trick is how to get a recording without making it seem like “I’m afraid you’re going to die soon, so I want to record your voice.” He wouldn’t take that very well. Maybe I need to find a way to get him to leave me some voice mails…
That’s a good attitude. There are lots of possibilities, and many of them involve no additional treatment. You’ll know a lot more after the biopsy results, of course. And even if treatment is needed, there are plenty of stories of people who still live normal lives…as shown in this thread.
PSA tests are controversial specifically because a lot of people end up getting biopsies that show no cancer. There are a lot of false positives with the PSA test.
I know that I’ll take mine seriously - my doctor says he’ll start doing one as part of my yearly physical this year, based on family history. (I’m in my late thirties.)
-D/a
I’d tell Dad I want to save the family stories, and I don’t want to wear him out by writing everything down. Chat a bit about the stories you remember hearing as a kid, and give each one a title. Then you can leave a list with Dad, and HOPEFULLY he’ll record the stories.
For me, I’d be thrilled with stories of which ancestor came to America, what he or she left in “The Old Country,” about any wars Dad fought, or Dad’s uncles or brothers or grandfathers fought.
Ah, so many things.
One story my dad told me, was how he got his name. When his mother was pregnant with him, my grandfather’s brother was killed in a mining accident. The brother had never married.
My grandparents made the decision to name their unborn child after the uncle he’d never know.
Just got back from my biopsy. It was … unpleasant, but not horrible. The only actual pain was when the doctor injected the novocaine (he didn’t specify the painkiller but he said “just like they use at the dentist”). After that, it was a dozen little bumps and then it was over.
So they took 12 samples and I’ll get the results on Monday or Tuesday. I thought the doctor was a little coy about the ultrasound pics because he didn’t say whether they revealed anything bad or not, but I don’t know him well enough to be able to tell.
Anyway, trying to anticipate a good result and not stress about the possible bad ones.
Roddy
Ok…report from the radiologist. Basically, he says this is not uncommon, and has a very good chance of having a happy ending. (YAY!)
Dad still has some incontinence issues, so they are going to wait a few months before starting radiation. The hormone treatment should stabilize things for a few months anyway. They’ll monitor his PSA in the mean time, just to be careful. Next test will be in 6-8 weeks. (The hormone treatment can actually cause a temporary rise in PSA, I believe…so doing it too soon isn’t useful.)
Once radiation starts, it’ll be five days a week for seven weeks. Each session takes about 10 minutes. Major side effects tends to be fatigue and diarrhea.
So…now we wait again. I’ll check back in when there is more action. In the mean time, we have Roddy to consider…
Glad it wasn’t too bad, Roddy. I suspect the ultrasound was to guide the biopsy process, not for diagnostics. I sent a note to my Dad asking if that happened with him - I’ll let you know what he says.
Good luck not stressing
Dad says he opted for general anesthesia for his biopsy, so he doesn’t know about the ultrasound. It also explains why he thought it was no big deal.
The internet seems to concur with my guess, though…it isn’t diagnostic at that scale, so there is no useful comment to make. The doc probably wasn’t hiding anything.
I can confirm this. The ultrasound is there merely to guide the doctor so that pretty much the entire prostate is sampled; it has no diagnostic function.
(Fingers, toes & eyes crossed for Roddy, and for D/a’s father.)
I spoke to my sister this evening. She’s not convinced that it’s under control. But she does tend to see the worse.
She’s worried about some of the language in the pathology report - we never got a copy after the surgery until now. I asked my parents for it, and they asked while at the office today.
My sister worked at Moffit Cancer Center for a while, and knows a bit about this stuff…but admits that she isn’t really clear on some of what it says.
For instance, the report says:
Tumor present at the left lateral and left anterior surgical margins in multiple foci.
She thinks this (and other statements) mean we didn’t have a clear margin, and the cancer may have spread. The doctors at Cleveland Clinic didn’t indicate this to us, though…and I’d like to trust them.
So…I’m going to find someone who really knows how to read the report and get a second opinion. I have some a bunch of friends in the medical field, and I’m pretty sure I can find someone…but if any Doper wants to give an unofficial opinion, I’ll be happy to type it up and send it on.
-D/a
Hmph, I wasn’t given this option. I would have liked the same kind of thing they gave me for my colonoscopy (crap, getting old is definitely not for sissies, and I’m probably the biggest sissy you’ll ever meet). Just zoned out right through it (the colonoscopy, that is) and then came right back to life as soon as they stopped the drip. I already had a ride arranged to get home (today, that is).
Glad to hear that folks think the ultrasound is not meaningful. I wonder, then, why he stuck the prints into his shirt pocket when he was walking out. The nurse was even looking for them.
Also, may I echo OttoDaFe’s hope for the best outcome for** D/a**'s father. I think getting a second opinion on the meaning of the language in the pathology report is an excellent idea. I plan on asking to see my own pathology report first thing, no matter what the outcome.
Roddy
I had a robotic Prostatectomy at the end of August after a routine blood test by my GP showed a sudden increase in my PSA (from nothing the the time before to pretty high – I don’t remember the exact numbers.) My subsequent biopsy showed positives in 11 out of 12 samples and my surgeon advised the surgery ASAP because I was only 50 at the time and this had developed so suddenly.
The ASAP surgery still required a 6 week wait to deal with his backlog (and vacation) and all went as advertised and the happy de-catheter day came one week after the surgery. Unfortunately, about a month post-op and just as I was beginning to gain some confidence in my ability to regain continence I had a problem when a blood clot stopped me up completely. I’m a guy so I wasted six hours or so at home waiting for the problem to clear up on its own, and when it became too much made a trip to the emergency room. It took four (!!!) tries to get a new catheter in and in the process my still-healing urethra got separated from my bladder.
This led to more surgery, a week in the hospital, and an additional two weeks with the catheter. After this I made pretty good progress, graduating from adult diapers to pads and finally what my wife calls my big-boy pants around Christmas. In the middle of February I had a brief scare when I developed a set of symptoms that my doctor had told me to watch out for and take as a sign to go directly to the emergency room. This time I did and ended up having one more surgery (outpatient this time) and one more week with a catheter, but now all seems pretty good again. On the bright side, my PSA’s through this period have all been “undetectable,” which has made the rest of the hassle worth while in my mind. It’s been a sucky nine months, but at least the indicators are in the right place.
I’ve given you my medical history here in the hope that (1) your dad has a simpler time of it and (2) to give you a heads-up about possible complications. That period of weeks after the surgery when you pass occasional clots can be pretty disturbing, but if he gets to the point where nothing is coming out he needs to deal with it right away. watch for those symptoms they warn about and act quickly of you see them.
Thanks Curate. It’s a good reminder that, even when things don’t go smoothly, they sometimes can still be handled.
I hope after all that ordeal, you’re living a healthy and pleasant life. It had to be scary going through it!
Doing more research, I’m fairly positive that they didn’t get a clean margin on my Dad’s prostate. But it also seems like it’s manageable,
and highly likely not to be the thing that kills him.
-D/a
Digital – In my post I neglected to mention that I also did not have a clean margin. In my case, though, the doctor said that the place where the capsule was broken (not sure if that’s the right terminology) was at a location near some of the connective tissue that holds the prostate, and he said that he routinely cauterizes that tissue as part of the surgery, so that he might very well have taken care of the situation anyway. I don’t know where your dad’s margin problem was, but I hope he had a situation similar to mine. You might ask the doctor when you get a chance. Other than doing followup PSA’s every three months for a while instead of every six or twelve, we haven’t made any accomodations to the situation, and my doctor is a pretty aggressive guy.
Update: I had my biopsy last Wednesday and got The Call this morning. Result - 100% clear, with 96% probability that nothing was missed. Followup PSA test in 4 months.
Yay, me. Thinking of some way to celebrate; probably I’ll just kiss and cuddle with my partner tonight. This will definitely be high on my list of blessings to count.
All the best to everyone, and I’m still hoping for a good outcome for D/a’s dad.
Roddy
