Uptight about Monday

Well, I'm scheduled to meet with Dr. Maha Hussein, supposedly a top-notch medical oncologist at Umich on Monday. I am really uptight about one thing. I suspect they will want to do another PSA test. My post-op PSA has been rising (see my signature below). My next one is scheduled for 12/21/10. I will probably delay that until 1/3/11 as I have my next appointment with my Ford team on 1/7/11. I might as well wait so I can enjoy the holidays.

My concern is that if it is done on 11/1/10, the cat might be out of the bag at that time. I would just like some time to try and live life. My wife and I are thinking about going on a cruise (we have never taken one) during my break, around 12/13 for a week. I fear that a bad PSA test on 11/1 might result in a suggestion to start SRT immediately or do another PSA a month later and then start SRT should it confirm the bad numbers.

I guess if they want to do a PSA on Monday I'll express that opinion and see what they say!

Incidentally, here are the questions I'll be asking on Monday. Feel free to suggest others:

1) How do I know if the barn door is open? In other words, is there any way to determine if the PC has gone systemic, which would eliminate the need for SRT?

2) Does it make any sense to do any kind of scans? If the probability of anything showing up is say 4%, does it make sense to subject myself to those tests?

3) Does it make sense to get on HT before SRT? If so, right now? Or under what conditions?

4) I am assuming that SRT is the next step if my PSA rises. If so, what PSA level would trigger that next step?

5) Supplemett/diet recommendations. I read a lot of contradictory reports (except for D-3). Opinions?

Mel

 

With your PSA progression, you may not get ot .2 if you are indeed on the way up. If SRT is in the cards, you don't have to start right away. You can go on HT for a month or more to get through the holidays. Adverse effects of HT, hot flashs and loss of sex drive, take a while to kick in, so it shouldn't impact your trip. Alternatively you can just roll the dice and hold off on the PSA test. Best of luck in whatever you decide. BB

PS - How about my Celtics kicking Miami's butt. Go green!!!

Mel...your doubling time isn't that slow. .01 to .06 in six months (psa doubling 1.1 ~ 2.6 months w/ 10% error margin) isn't in your favor and if that trend continues by January it will be 0.14. Still under the 0.2, but with the velocity and with a 4+3, I wouldn't wait much beyond January for testing.

mel,

why are you even seeing a medical oncologist so soon? you dont even have BCR, and you are a long way from that yet. in my local
area, the prevailing thinking post-surgery, is 3 consecutive rises above .10, based on 3 PSA tests each 3 months apart. i would at least
wait to see if you even hit .10. just seems like jumping the gun a bit.

i think any scan at this point would be a waste of time or money. with a psa of .06, what would you expect it to find?

on your question #1, not even an expert can give you a sure or exact answer. how long it takes you to have BCR, if you ever do, would give
some possible clue to the question

question #3 - you would get many answers there. i talked to 3 radiation oncologist, 2 of 3 said not to do the HT before SRT, the 3rd one said yes, but then said he couldnt prove that i really needed it or if it would work.

david in sc

Thanks for all your responses.

Piano -- your answers to my questions agree with mine. But I want to see what the expert says. Yes, one of my main queries involves HT in conjunction with SRT. There seem to be a few studies that indicate it might improve my odds (again, at a cost). I have also heard of various tests to determine the aggressiveness of PC (ploidy analysis?). I'm not sure if they would be useful (ie: impact any choices). Certainly a question to ask.

Goodlife -- thank you for telling me to relax and not think about PSA/PC/etc. I'm pleased that you can do it. I can't quite get there although I am close most days. As I've said before, when a PSA is looming (within 2 weeks) my anxiety goes way up. THAT'S WHEN YOU SEE ME POSTING A LOT! When it is not looming, life gets back to very close to normal. I daresay that MOST folks here DO think of PSA and PC every day -- especially those who don't have the best pathology. We all have different psychological makeups.

David -- why NOT see a medical oncologist? With a BCR apparently on the horizon, there are questions that I have that are best answered by an expert. Additionally, if things really go south I will need a good medical oncologist on a regular basis. Dr. Hussein is not easy to get in to see. She is SUPPOSEDLY one of the best around. I want to establish myself as one of her patients (unless I end up not being impressed). Now is the time to do that. I hope that answers your question. But I have one for you: why are you NOT seeing a medical oncologist?

LV-- yes, I am very concerned about the doubling time. However, I am not sure how valid any of that is with PSA scores under .10. In fact, the MSK nomograph won't even accept figures below 0.10.

A general comment to all. One of the criticisms about the ultra sensitive PSA tests pertain to the anxiety it causes. I am a perfect example of that. But, on the other hand, it has allowed me to get everything in place. If I do have a BCR and need to start SRT, I will be in a position to start it quickly, and not scrambling to set up appointments and first find out about SRT. Kind of a double-edged sword here!

Mel

 

David:

I don't know... if I was looking at a possible SRT failure, I would be looking at seeing a medical oncologist.

But, then again, as you point out, perhaps I am way too far ahead of the curve.

(I honestly don't think I am, but I wouldn't bet on it!)

I'm glad you have a contact that's a good medical oncologist.

Mel

 

mel, hes more than a contact. at the time, i was one of only 38 known cases of that type of cancer in all of US medical history, and less than 300 cases in ithe world. he had one other patient beside me with the same cancer, which effectivey made him the world's expert. since then, they have reduced the number of cases, where i had the cancer on my body, i am now one of only 6 verified cases in the entire world. that is way beyond being ultra rare. his research at the time, probably saved my life, as it was a very malignant cancer, i have been free of it for 10 years now, which he considered the safety mark for that cancer. so if i had to see him, he's my man in advance

I have said this to you before. I would say , again, the 0.01 and 0.02 are esentially the same and the variance could likeky be "noise". So if that is true, the 0.06 could be considered just one rise? you really need some more psa data before you can draw ANY conculsions. I am sorry to see the agony you are in and we all feel for you. You (we) are all in a situation, we can not control weather our psa rises and if I was in the agony you are in, I would definately get myself on some medication for anxity/depression. It seems like your head is about to bust? Sorry to be so blunt but, some way, either by looking at the numbers differently or medication, you seem to in need of some relief.
Ron

Alf,

What a journey you are having. I thank you so much for posting. I take great encouragement from hearing men with Gleason 9 who are giving the PC a run for its money.

There are times in my mental journey that I say what's the use ? It is guys like you and others who give me the courage to go on, and be thankful for where I am at.

I hope you too can find time that you are able to somehow push the PC to back of your mind and enjoy the life with your significant others, be it cruises, walks in the park, weekends away, or whatever you find pleasure in.

Goodlife

alf so pleased that you tood the break in NYC. I know it was good for the both of you. Thanks for you post. You give all of us hope.

Cajun Jeff