A dear (long time) friend (since July 1979) died yesterday morning of stage 4 pancreatic cancer....and ~~I'm still standing.
I really don't notice anything missing since my surgery ....been feeling great. My partner's ALS/Alzheimer's/Lewy body Dementia keeps us awake a lot at night...but last night we both got a good night's sleep and then after going in for bloodwork this morning and going to Costco and lunch along the way coming home...I got in bed for a little nap and passed out in a "Coma"....for almost 2 hours. I feel so rested now...but this amount of sleep seems crazy. It was so deep and peaceful.
I get latest bloodwork results on Friday and I'm sure she will push for another Axumin Pet Scan...I might try to delay it until January unless the PSA has skyrocketed. Last month it had gone from 3.750 to 6.410. Hoping it stays stable or even dips...from less Testosterone since my physical castration. Only time will tell what the next leg of the journey will look like.
Cool thing...neither of us has ANYTHING in our schedule for tomorrow. A day of "carpe diem". Maybe time for a Dairy Queen Milk Shake.
gJohn
p.s. I keep trying to post pics and it keeps saying "problem loading". Maybe my files are too big....by the way, it was a picture of our lunch yesterday of grilled salmon, mussels and broccoli in a light cheese sauce with mushrooms. Finally got it.😊
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greatjohn
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So sorry about your friend. We do lose so many around us when we run in cancer circles.
My condolences. Take as long as you need to honor your friend's life and memory.
Meanwhile, ... That meal looks yummy.
As for PSA increases, my anecdotal personal preference is to reserve a catastrophizing term like "skyrocket" to PSA increases that suddenly get up into the 40-140 range or above. All increases below that I choose to think of psychologically as more like "mentos and coke" events. Ha. Ha.
The Combination of all factors, such as PSA trends, doubling times, imaging results, symptoms, other lab tests readings, etc. will probably be a better overall view of disease status and potential treatment decisions.
(Of course, this might not work for someone whose PCa does not express much PSA in the first place. )
My oncologist says the same thing, but seems concerned by my rapid, though still fairly modest, PSA increases. I’m feeling great...and that, to me, is the most important consideration right now 😊
I wish we could get a lunch like that in our neighborhood. Personally I would not rush into another PET scan. If your PSA goes down there is little useful information that the scan might provide. Who needs the additional radiation? I had two PET scans which did not show a lot even with my 100 plus PSA. There were two enlarged and growing lymph nodes and their size can be monitored with just a CT scan which is much less radiation. I just started ADT and the idea is to monitor PSA and see what happens and probably do a CT scan to see if the lymph nodes are interfering with critical organs. I went to through the process to se if I could get a PSMA scan and it was determined by both the UCSF oncologist and my regular oncologist that the PSMA would not be likely to provide useful information and that delaying the ADT was risky.
I keep trying to "back the petscans" up...these are special Axumin Pet Scans that are more critical in checking prostate cancer....but I agree, I don't want to do so many. P.S. That lunch was Flash Frozen Salmon from Costco..I cooked in my airfryer (which is the best) and the mussels were frozen pre-cooked that I heated with broth and butter and heavy cream. The restaurant WAS our house...LOL...and we were eating on the back patio (al fresco). One of the joys of Winter in Ft. Lauderdale/South Florida.
We have a friend who swears by Costco salmon even though it is farmed. Might give it a try. I had two Axumin PET/CT scans which showed uptake in two mediastinal lymph nodes. The scan is not accurate enough in distinguishing PC from other sources of inflammation that it was sure if the tumors were PC or not and since they were far from the prostate with not much else showing up in between it was even less clear. A biopsy through my trachea made it clear that it is PC. I spoke at length to a urologic oncologist at UCSF about the PSMA scan which is being advertised as vastly superior at discriminating PC than Axumin . UCSF is one of the places where they are doing trials. He did not think that in my case even the PSMA scan would be of much use. Everyone is different and for some people the PSMA scan makes sense. I agree with both of my current oncologists that it does not make sense to do a scan just because you can. It feels like a great bargain to have almost all of a "$50,000" procedure paid for by insurance but if there is no value in choosing a treatment, there is no point in getting more radiation exposure.
that's what I keep telling my oncologist! Plus I'm just sick of tests.
re. the Costco farm raised. It's farm raised in Norway and we were there recently and saw the way they farm it. It's VERY open and seems more like "fenced in in the ocean" than farmed...LOL. That's what sold me on it.
we will definitely try the salmon and the muscles and salad too. i knew my friend was very fussy about food but thought he was just losing it, buying farmed salmon at Costco.
I was the one pushing the PSMA scan thinking it would be good to have any information that could help make decisions. The PSMA is considerably better than the Axumin but still would not really do anything for me other than cost $1100 and delay my ADT treatment. Both oncologists thought there was no point in getting it so unless your situation is very different from mine (which it could be) I sort of doubt that another Axumin scan would help you make decisions. I am not sure why I got the second one? My PSA was up to almost 100 and I guess I thought the second one might show something the first one didn't
Sorry to hear about your friend. I lost my partner of 16 years to pancreatic cancer back in 2016. It was at that time I joined this forum, mostly to read the posts. At that time I started to see a higher PSA result, ranging from 5.5-7.0 over the years since. I have moved and I am seeing a new urologist now. I have an MRI scan at the end of December to see if I just have an enlarged prostate or if there is something more. At this point a digital exam and colonoscopy are all I have had. I am concerned, if I have to get a prostatectomy that I may have to say goodbye to my penis as I now know it. As for sex, I am usually a bottom and was never really too good as a top as I am not one who you would call well endowed anyways. As long as I will be able to still enjoy anal sex, it will probably be enough for me. At this point I don’t know if I even have prostate cancer, although since my father went through all this many years ago, there is a good chance I may have cancer too. Will there be a problem with sex, when other men see I basically don’t have a working penis anymore?
I’m not having a problem with sex as I’m thrilled by one of the main side effect of castration ..total lack of interest in sex. There is so much more... I have so many other interests. That said, if you’re interesting enough, others will want to be near you and will work (I’m guessing) with what you have to offer sexually. All the best.
I am not convinced about chemical castrations to reduce testosterone given that many times the cancer cells can multiply without testosterone present. But I feel I am getting ahead of myself, and should stick with one step at a time. Perhaps the way to go is the road less traveled story here. I live alone now and don’t really have anyone special in my life. Time will tell.
yes..I feel like you're trying to "see around the corner" before you get there. Wait and see, but be aggressive as it might be the difference between an easy radiation/surgery decision that will fix the problem....and STAGE 4 like so many of us are dealing with. By the time my PSA was 7 ...I demanded a biopsy that came back Gleason 6 (very good)...by the time I had radiation...and the PSA never went below 1.0....I was soon diagnosed with Stage 4. It's a slow walk for some and a sprint for others to the finish line. I'm no expert on the variable with this disease, but if I could go back in time I would have had an MRI of my prostate before I reached PSA of 7 if it was possible. For me...the Axumin Pet Scan was not yet available locally....I had it as soon as it was...and that is when they found the other 3 mets that were NOT in my prostate and I got the Stage 4 diagnosis.
Take it one day at a time and do what is called for today....an MRI or a Biopsy. It could be inflammation/infection.....but with a history in your family, I'd err on the side of caution.
Thanks for the reply. I seem to be at 7 right now and I will wait for the new year to find out what I do next. The mri will be at the end of December so for now I just wait. I try not to worry but it’s difficult to do so.
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