Where Acceptance meets Reality

User

Posted 11 Aug 2015 at 14:49

I can say that I honestly thought I'd got my head around this cancer business. Facing it head on, I was getting on with my life, enjoying each day and making the most of the life I had left.......or so I thought!

Then I visited my Onco yesterday for an update on my recent blood test. My PSA has gone up from 1.55 six weeks ago to 4.85. As I sat there in his impersonal white walled office, reality struck, the train journey home was as gloomy as the dark grey sky and despite having upped my anti-anxiety tablets this past week, I got home and simply burst into tears.

I thought the Prostap had been working, despite several rises in PSA because these rises had all been in decimals peaking, I thought, at around 1.55 - but despite my T level going down to 1.0 and coming off the Casodex several weeks ago, it appears to have jumped according to my calculations by 212% since the last test six weeks ago, a monumental rise in my books. My Onco felt differently and showed me a trending graph and although my PSA has been going up consistently, since the last rise, it appears to him that the trend shows more plateau since the last reading than stratospheric. I told him directly that I was frightened and he said, and I quote, "as your consultant, I am not worried at this stage as you are completely asymptomatic and your scans look okay" (apart from some minuscule showing on two lymph nodes.)

I asked about the Spartan trial I was supposed to be going on following this consultation and he sheepishly (and I'm not sure completely correctly) advised that it was now fully subscribed. He said simply that he would repeat my PSA in 8 weeks and do some further scans to see if there was any further activity whereby, depending on the results, I might be available for one of two trials, one he named as Preside and the second one he would not reveal the name of. Again, I asked myself why the subterfuge?

I personally feel that my treatment is now becoming reactive rather than proactive, not inventive at all - and now the terror visions of imminent death are overpowering my previously strong mindset. I could sure do with some comments from those with a similar pathway.

Thank you

Bazza

User

Posted 11 Aug 2015 at 17:44

Bazza, i would be a bit more interested in the T score - you are not at castrate level so it seems to me that a rise in PSA is likely to be because the cancer cells are still being fed. I don't think you would be in the realms of castrate resistant disease unless your T was below 0.69 and PSA was still rising.

Who knows why there is apparent subterfuge but my instinct would be that it is more about how trials are accessed than the onco keeping things from you

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

User

Posted 11 Aug 2015 at 18:10

Barry...I too would be scared so I'm not going to give some bxllsxxt otherwise. But do you trust your oncol? If not could you go for a 2nd opinion?

Bri

User

Posted 11 Aug 2015 at 18:13

Lyn

He says this about my T too and the reason for it not responding is because of my age. That's why I'm now having a 3 month dose of Prostate administered every 8 weeks to try and counter that. Apart from the sweats, gyno and psychological stuff, I feel absolutely fine.

User

Posted 11 Aug 2015 at 18:59

Bazza

Subterfuge or possibles?

1)Not yet officially on stream?

2) Doctor treating patient rather than just the cancer. By knowing the name you look up the criteria which further results show you don't meet and they might cause you more concern than not knowing?

Keep fighting

Ray

User

Posted 11 Aug 2015 at 19:31

Hi Bazza

I am in a pretty similar situation to you in the respect of options etc and chasing that elusive cure, pushing for the Onco to think outside the box and I know how frustrating it can be, But keep pressing for them to be more proactive, and don't take no for an answer. When I was on Decapytyl I found the potency would diminish around the 2 month period but failed to persuade them to bring the dose forward to counteract this and also asked if they would possible add Casodex into the mix to attacking the cancer on both fronts as I was unable to reach that magic figure of 0.69, they again refused saying they wanted to keep the Casodex back for later, I found this approach to the cancer as taking a defeatist stance so got out of there pretty quick. I truly believe that we need to hit this cancer with a combination of drugs to confuse the hell out of it, hopefully to put it into a durable remission at least. I start back on my Casodex 150 tonight to try and halt the increase while I persue other options.

Good Luck and Keep Fighting

Roy

User

Posted 11 Aug 2015 at 20:02

Bazza,

I would say that you still have your head around this cancer business. Here's to keep facing it head on, keep getting on with life and keep enjoying each day. As many old hands have said, it's just a number. Spartacus wouldn't have wanted it any other way.

Flexi

User

Posted 11 Aug 2015 at 20:45

Bazza

I've been there and now have a drawer full of T shirts http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif. The number of times I have fretted over PSA rises that ranged from decimal points to many hundreds (now currently just sub 1700). I could write a book! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

I never managed to get sub 1.0 on the T front without steroids (Dexamethasone). No amount of Prostrap will affect adenal T production and neither will frequency. Lots of other options as well. I am SO much closer to the imminent death scenario than you but I'm still booking cruises and enjoying life. OK, I need weekly hospital visits and regular blood transfusions but at least I' still here and in relatively good health (ECOG 1 now versus ECOG 0 before).

Chin up my man! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Nil desperandum

Allister

User

Posted 11 Aug 2015 at 21:51

Bazza, the fat lady ain't singing yet, stay fit, eat right, think positive as we are all enigmas to the quacks, they just try to pidgon hole us. Never give up my friend.

Kevla

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 11 Aug 2015 at 22:53

Bazza

I have sat here all evening trying to think if I can say anything that will make a difference, if so what should I say and how would I get my message over without sounding judgmental, harsh, over slushy or simply uncaring. That would defeat my purpose. I care too much.

If you think your Oncologist is not treating you pro actively then it may be time to seek a second opinion. You have to be in control of your cancer.

Your PSA has risen by a huge percentage but a small amount. However with the prostate gland gone where is that PSA being generated? You have said you have two small lesions in the Lymph nodes and your T level is still 1 so capable of feeding any cancer. So I guess these are the villains of the piece. Treating them with RT or even further surgery might be an option but of course every treatment comes with risks. If it brings you a longer period of remission then it has to be worth it.

I tried to look back and see what your PSA was at diagnosis before you had any treatment but could not see that, would it have helped me to say anything constructive? probably not but for instance if you started out at 10 then 4.85 is still better than where you started and it has taken a long time to get back to that level.

Your current Oncologist is not concerned,he thinks everything is under control, he is doing some more scans and another PSA test in 8 weeks time. Your options seem to be to go with his judgement or if you still feel strongly about it go for the 2nd opinion.

You are most certainly not facing iminent death from PCa , trust me I have witnessed that path and you have not reached the mid race hurdles yet. So Spartacus get your chariot ready, climb up on board and get back into the fighting spirit. We are all with you 100%

My very best wishes as always

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Where Acceptance meets Reality

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