Update - Almost 1 year Post Ralp

Well I just have my 4th, 3 month check up with mixed results. First of all I did and still do my exercises and I am drip free as long as I pee on a regular basis. The ED is still there but the shots work. The pills do very little. My PSA is a concern. At 3/11/19 a month after Surgery .1, 6/25/19- <.06, 10/14/19.- .06, 1/6/20-.08. I know it's only .08 but when it/if it gets to 1 they want to start meds or radiation. See my bio below. I am high risk and still very worried that things are going to explode. I am only 58. I am not really *****ing, just venting. I am in good shape and ready to take on the battle if and when I need to. My nodes were clean but my seminal vesicle was positive and removed. We are now waiting six months for my next check up on both my PSA and the spot on my kidney. The last scan on the kidney showed a slight change in shape and size, but it was on two different machines. They will do a sonogram prior to my next appointment. Life is good, but like all of us, I always have a dark cloud over my head. The waiting is the hardest part. Thank you for letting me vent.

When you say waiting for your PSA to reach 1.0 to initiate RT, I hope you meant 0.1. Waiting until 1.0 is way too long.
If your next PSA shows another uptick, I would think it's time to pull the trigger. Some might say to pull the trigger now.

Good luck!

Sorry, I see now you said your 4th 3-month visit. Well, the slower the rate of rise to an actionable PSA level, the better. But it may be time to meet with a RO (and or a medical oncologist) and get a plan in place. You may want to discuss the benefits of a newer scan, like auxim or 68GA-SPMA-PET to identify the source(s) of any PSA increase. Unfortunately, these newer scans catch more the higher your PSA is, so there can be tradeoff in waiting for a higher PSA. Another topic for discussion might be ADT.

Djin

FranPro said...
PSA,SCREEN 0.08 (from my last visit)
ng/mL 0 - 4.0 ng/mL
So if I go up it will be .1 right? Not .01.

If your current rate of rise holds approximately, yes. I always suggest that all decimals less than 1 be written with a zero in front of the decimal point, as they always are in all lab reports and all publications, so yes, 0.1. This avoids the ambiguity that occurs when you see, e.g. .01 -- you are left wondering if 0.1 was intended.

0.1 would still be considered early salvage therapy.

Djin

Post Edited (DjinTonic) : 1/16/2020 8:32:56 AM (GMT-7)

On the ED front - sooner or later, something's bound to come up.

and yeah looks like you might on your way to the RO at some point. That sucks, but until that nasty .1 shows up, enjoy life.

Hang in there,
Andrew

Fran, sorry you are dealing with this, although not a total surprise with your pathology, I'm sure. I wholeheartedly agree that 3 month intervals are more prudent at this point.
Also, i agree with Djin and Tudpock, i think its super important that you have a plan in place so that you can act quickly if you get another rise at you next test result. Getting set up with an RO can take time, they will usually want copies of your records sent prior to giving you an appointment (at least that was my experience at MSKCC), and then you've got the lead time of getting an appointment, a first appointment/new patient can be longer lead time than just setting up, for example, a follow up.

With the anxiety of possibly, another rise at your next test interval, you are not going to want to have to deal with that and the attendant delays.

I will update my signature. I saw the dates were off a bit. I did the signature update from memory, but now I have access to my test results online. Net result is the same.

Thank you for your advice Mumbo. I am going to talk with my wife tonight. I have an RO that I met with before choosing RALP. I am going to set up an appointment with him tomorrow after talking to my wife tonight.

Russ/FP

I contacted my Urologist and they ordered a 3 month PSA checkup. I am calling my RO this afternoon.
Thank you all for the responses and support today.
Never give up!
Russ/FP

jronne, have all the sex you want and when you want. Without a prostate it has no bearing on your PSA. That is only valid for pre-treatment measurement when it is the functioning gland that is expressing PSA.

FranPro, it is better to be in front of the disease than play catchup. Your trend is clear and not looking friendly. Remember, the longer you wait for salvage radiation, the greater the probability a few cells get to places outside the radiation field and become systemic. The G4 critters can be very nasty and like it when you let them strengthen. Many would say that SRT should already have started. I remember TallAllen referencing 0.03 as a trigger point. You are past that. I am surprised you went to six month testing and am glad to see you get back to a 90 day routine and are seeing a RO. My uro has kept me on a three month PSA schedule due to my initial high risk dx. Many Urol would have me on a yearly test since I have been stable, but a lot can happen in a year.

FranPro said...
Thanks for the advise on the supplements. I do take 2 daily men's health general vitamins. I do go to the same lab for my tests but not always at the same time, but I will start doing that. As far as sex, I don't remember. But since sex entails a shot to the wanker, that is usually a Friday night or Saturday night thing, so most likely I would do my blood work on a weekday morning. I have a call into my RO and I am hoping to get a consultation with him this week. Also, my Urologist agreed to a 3 month PSA check and a sonogram on my kidney in 6 months. Thanks for the advice all!

I also had read that Biotin(B7) can lead to a false reading, so best avoided for a week or so before a test. Which also makes me wonder about any other supplements. Though I can't say I have ever noticed any negative results from even high dose vitamin D or C, but you never know. Keep on keeping on!

Hang in there FranPro... I have a pesky G6 that has taken me on RRP, SRT, and still went up to the .20-.30 level... But it seems to have stabilized and I am 13 years past dx and still living life to the fullest... PSA values don't cause me anxiety anymore... It's all just a race to outlast PCa and die from something else and treatment tools/technology nowadays is on our side!

pasaten

Fran, your time with the Uro is done. You need to talk to a RO, or even a MO. Urologists are surgeons--they can do your follow up--but your next moves will be with the radiation crew--they are the ones to talk to now. Call your nearest cancer center of excellence and make an appointment with them.

I tried, I have a good RO at the Dana Farber Cancer Institute. I was shot down by my urologist for a referral. I guess I need to be .1 before they will agree to a referral. My urologist even said most Uro's would have me on radiation now. Not that I want it, I just want a plan incase I need it.