Not a good day

User

Posted 24 Mar 2016 at 20:46

Hi - my first post

I was diagnosed in November following voluntary PSA check due to family history. My PSA was 97 and subsequent biopsy showed PC in all cores. Then T2 gleason 4+3. In December I had an open RP and extended lymph removal. 8 week PSA was 0.97 and I was told that there was cancer found in 1 out of 16 lymph nodes. So I'm now T3aN1R1.

Today I met with Oncologist to discuss further treatment and my PSA has risen already in 1 month to 1.5.

This news has hit me harder than the original diagnosis. All the positive feeling of having the 'big op' behind me has evaporated and I'm now worried and confused on what to expect going forward.

Next step is repeat MRI and CAT scans to try and ascertain where the PSA is being generated from. With PC present in only 1 lymph, the thinking is Pelvis area or that it's bypassed the local lymphs and is higher up. I really want radiotherapy as an effective and hopefully permanent treatment but that's not likely to be possible until we identify where it is. HT is also on the cards but will muddy the waters and make detection that much harder.

I think it's dawning on me that a total cure isn't going to be likely and this is going to be a long journey. Well if that's the case, the longer the better I guess...

How on earth do you keep up the positive attitude?

User

Posted 24 Mar 2016 at 22:10

Hello Fluter
You are almost a carbon copy of my stats. Click my picture and if you can be bothered read my journey. One good thing to see is that you seem very up in your knowledge of the situation , and that is a very good thing. I like you had poor post-op results. My PSA was 1.5 at 8 weeks , rising to 2.4 at 12 weeks. All a bit grim. Had a flashy PET scan as they very much suspected spread , but they admitted PSA was prob still a bit low to be of any use. They put me on HT and booked me for RT. I refused it first time round as it was Xmas , and then after negotiations they confirmed they still felt I had spread and told me that RT was unlikely to cure me or even extend my life. So I permanently cancelled it , feeling that I tried for cure and have been through enough. If I was the standard undetectable post-op and then my PSA had crept up , then I know I would have felt obliged to have RT as another possible avenue for total cure. I'm on HT for life now. That's my decision. Reading people's stories on here it won't be that pleasant , but I was told I'd be on it anyway most likely , even if I had RT. I think you are kind of in the same boat yeh ? It's important you are guided by the professionals , but equally have a say and stand firm if you have true feelings and knowledge about your treatment plan.
I had 5 of 18 lymphs cancerous bilaterally and minor spread to bladder. I'm struggling to keep a positive attitude , and in fact I didn't have one to start with if I'm to be honest. I'm not so sure attitude has anything to do with it , nor exercise or diet , but there are people on here who will swear diet and exercise and lifestyle choices have very much worked in their favour.
I have been given the opportunity to come off HT altogether and let the PSA rise to 5 in the hope that a scan will find the culprits. We've not made that decision yet.
All the very best and please keep posting.
Chris

User

Posted 25 Mar 2016 at 00:10

A personal view but I don't think anyone is truly cured of cancer although some are fortunate enough to get a remission that lasts the rest of their life. I don't think you should give up that goal just yet though - there are a number of interesting things going on at the moment which are changing the way oncologists and urologists respond to advanced or locally advanced prostate cancer.

If they can idenify your affected nodes and there aren't too many, you may be able to have cyberknife treatment which is a very targeted form of radiotherapy.

If the scan can pick enough info up and the affected nodes are all pelvic, normal radiotherapy / HT can be successful.

There are two men on here that have been offered chemo as part of a curative treatment plan - the hope (hypothesis?) is that the chemo will wound the cancer cells enough that hormone treatment / radiotherapy combination stops them in their tracks.

Fingers crossed the scan can pick up what's there.

Edited by member 25 Mar 2016 at 00:11 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 25 Mar 2016 at 05:17

hi chris j a great post and hopefully will be of some help to fluter, the help and support with personal stories on here are brilliant, sorry fluter but I cannot be of any help treatment wise, but all the best for the future as you say it is a long journey but you have friends on here

regards

nidge

Happy Easter everyone

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 25 Mar 2016 at 08:40

Hello Fluter and welcome to the site.

I can't help with information either as our situation is different but I do know that there is so much research going on that diagnosis such as yours doesn't mean nothing can be done.

There are many men on here in the no cure camp who have been on here for many years. Trials mean that treatments are improved upon all the time.

I hope that is so in your case and wish you all the best

We can't control the winds - but we can adjust our sails

User

Posted 27 Mar 2016 at 19:24

Hi fluter

My dad was diagnosed with locally advanced Pca 15 years ago this year, age 61. He's alive and well, thanks to long term HT. He had Gleason 7, psa 40

Not much else i can add, but there are certainly success stories.

I shall be thinking of you

Louisr

User

Posted 28 Mar 2016 at 17:37

Thanks so much everybody. I really appreciate your comments and support - really means a lot. Feeling much more positive after a sunny Easter weekend and planning to make the very best of life, whatever it brings. Onwards and upwards.

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