Update on my dad!

[Cammie2016]

Really weird thing has happened, my dad had his MRI scan on Friday, today he has just had his biopsy and he must have had another blood test when having the MRI scan. Anyway.. the man who did the biopsy was really lovely and my dad asked him his opinion on PSA results in the thousands? My dads was originally 2000. He said well look the other result has come back either 85 or 35 as can’t read the result!?

My dad couldn’t help but feel happy and so am I although we both know it’s still a high result and they are still looking at it being cancer, but surely this is good? He’s had no treatment at all? He did have a 5 mile walk before the original test ( he didn’t know at this point, exercise could affect the result) but from 2000 to double digits? 3 years ago he had a hernia op when they put mesh in could this have something to do with it? So confused!

[softwaremom00]

I am happy for you and I hope it means good things. I will pray that the biopsy brings you good news as well. Blessings!

[Cammie2016 in reply to softwaremom00]

Hi

Thank you so much, I do hope so too, trying not to get my hopes up although I can’t help it. It’s been such a rollercoaster few weeks and feels so so slow! Have to say I am not sure whether it was fair actually telling us that initial result being in the 1000s, terrified the life out of us is an understatement. Maybe they should gather all the results first then let people know. But anyway hope you and your husband are doing ok, always in my thoughts! X

[Scruffybut1 in reply to Cammie2016]

Hi Cammie, PSA readings vary either through machine misreadings, operator misreading or as with me, first told 16.7. 2 weeks later told the fax machine had a spec of dust after the 6 and should have been 167. 2 weeks later up to 200. Biopsies tell the tale and PSA settled as meds come into play. All the best David, still 0.030.

[Cammie2016 in reply to Scruffybut1]

Hi David, I don’t feel like they are being fair, the first test was lost, second they said was 2000 which of course terrified us, now the surgeon that performed the biopsy actually said “shouldn’t really say this but I looked at your scan and what I will say, which I shouldn’t Is I am fascinated by this and will be keeping an eye on your case” and said about the result being lower. My dad was smiling when he cane out, he’s took this as positive, you can’t help but cling to every word etc. Maybe it would be better to not say anything to patients about numbers and opinions etc til they know it all?

Glad you are doing good, thoughts as always with you all.

[Hidden in reply to Cammie2016]

He didn't say what fascinated him? What a tool.

[Cammie2016 in reply to Hidden]

I know I’m actually really angry now and especially if it’s bad news as my dad has taken it as positive

[eggraj8]

Don't necessarily trust the PSA results. We all tend to want to rely on a number but they can be very misleading. PSA is probably the best indicator and should be taken under the same conditions every time but often gives false reports. You really don't know which reading 2000, 85, or 35 is right if any of them. But in any case they are all high. The biopsy will give you a better indication but even then if the Gleason scores are 6 or even 7 you are still in the grey zone. Was a Digital Rectal Exam also done? That is the old fashioned way but tells if a nodule is on the prostate which is a good indicator. I don't see how a hernia repair even with mesh done 3 years earlier would effect PSA. Exercise and possibly a recent hernia repair has been rumored to raise the PSA but that would only be short time.

Good luck on the biopsy.

[Cammie2016 in reply to eggraj8]

Hi

Thanks for replying, it is all very confusing and frustrating, he hasn’t mentioned a digital rectal exam so maybe he hasn’t had that particular test. The surgeon who did the biopsy said although it’s not his field he wants to keep an eye on my dads case as it’s unusual, so god knows what that means, if anything at all. It’s a case of waiting I suppose.

[Hidden in reply to eggraj8]

My PSA was normal at 2.7. It was the DRE that spotted the cancerous tumor and lead me to get a biopsy. Gleason 8, but scans didn't show any spread. Opted for HIFU.

[sdnb in reply to Hidden]

How is it possible for my late husband's doctor not to feel any lump or anything when doing the DRE, yet his Gleason scores were 8, and all 12 sections of his prostate had cancer? His PSA was 20.4 when first diagnosed, but I kept holding on to hope that something was not accurate, all because the doctor "couldn't feel anything during the DRE". How naïve could have been!

[eggraj8]

Patience is the hardest word most of us who are on this journey have to have. Hopefully your dad is not on our journey but if he is then you and he will have to remember a few things. First he will have a new normal. He will not be the same, but that does not mean that life is not still good, just that he will not be able to do all the same things that he used to. Second, you will get conflicting advise from sites like these and from different doctors. Remember even doctors are practicing and all the advise probably worked for some and not necessarily for everyone. Third, all Drugs and Procedures have adverse side effects. Try to way the Risks versus the Rewards for each. Fourth, have patience, too many men start a drug program and when it does not work quickly they want to change drugs.

He should remember that with a caring daughter like you he is in good hands and the journey hopefully will go well.

[Cammie2016 in reply to eggraj8]

Hi, thankyou for replying, your advice and support it really is appreciated and will keep you updated.

[Dan59]

Cammie, That is certainly good news, keep us posted in biopsy results. I am not sure where they got the 2,000 psa from, almost sounds like it could have been lab error. That happens sometime.

Dan

[Cammie2016 in reply to Dan59]

Hi Dan, thanks for your reply, I have no idea, the surgeon said to my dad that although it is not his field he finds his case interesting and will be keeping a close eye on it! Don’t know if that’s good or not?!

[MelaniePaul]

That sounds like good news and I hope and pray that it means only good things. I think I would personally want to repeat the scans and blood tests just to make really, really sure...

[Cammie2016 in reply to MelaniePaul]

I hope so x

[AlanMeyer]

There was a study done of PSA testing once that showed a certain number of serious mistakes where one patient's blood sample gets mixed up with another. That could account for the problem here.

Alan

[Cammie2016 in reply to AlanMeyer]

Hi Alan, well they did lose the first one, so maybe, will keep you updated.

[Hidden in reply to Cammie2016]

They lost the first one. That should put them on your shit list.

There are idiots all over, and you should always be a little wary.

It does not hurt. Develop an attitude, is my advice.

[Cammie2016 in reply to Hidden]

Definitely agree