News that my cancer has relapsed

User

Posted 20 May 2014 at 21:11

I am new to this site and hope that I am posting this properly. I had a Prostatectomy last November to remove a Gleason 9. I thought then that it was at a stage 2. but during the op it was discovered that it was a stage t3a and had escaped through the capsule. My first PSA after the op showed as undetectable. It was followed 3 months later with 7 weeks of adjuvant radiotherapy. I was informed today that my PSA has risen to 0.2 and my oncologist is sure that it is a recurrence. I must wait now a further 2 months before another test can be given to see what the PSA is then, so that treatment can be started. I am in a state of shock since getting this news today and wondered if anyone else has been in a similar situation and the best way to cope with it. Is it possible to survive for years with a Gleason 9 recurrence????

User

Posted 20 May 2014 at 23:57

Hello and welcome to the forum.I guess you are still in shock and its alot to take in.If you like please read Eric's profile just click on my name.Eric was diagnosed gleason 9 psa 47 aggresive metatistic prostate cancer.You ask can you live for years with gleason 9 well in my opinion yes but that is only my opinion and can only answer by what has happened to Eric .so stay strong and there is always something in the tool box to try

Carol

User

Posted 22 May 2014 at 12:34

Bill, my partner is G10, T4 N1 M1, also low PSA at diagnosis. In our case, PSA was not a good indicator of the disease spreading, some forms of prostate cancer dont secrete a high level PSA. Scans were much more informative, may be different for you but bear this in mind, as only relying on PSA has meant my partner's disease has gone castrate resistant when a scan could have indicated further spread six months ago and treatment started much sooner.

Best wishes, Fiona.

User

Posted 22 May 2014 at 10:19

Hi Billy,

It's John here, your "Beatson buddy". A belated welcome to the forum. As you can see, you are in very good company. I've nothing to add to the comments already made as we are already in contact.

Stay positive http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Kind regards,

John

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User

Posted 20 May 2014 at 23:04

Hi Bill

Over a year ago I had my RP and following my 1st PSA test it came back at 0.42 so I new they had not got it all, but waited until my next check which showed a rise to 1.57, so on the suggestion of my Surgeon I underwent a PET/CT scan which found the spread, I have now just had RT to the area and await my results in a few weeks time, my Gleason was initially 4+3 but upgraded after the op but I don't take much notice of that as I had Hormone treatment prior to my RP.

It is understandable that you are shocked at this time, as we all hope to be cured by the operation, but we are were we are, and I find that being proactive helps me when I am awaiting the next step on this journey.

All the best

Roy

Edited by member 20 May 2014 at 23:57 | Reason: Not specified

User

Posted 20 May 2014 at 23:42

Hi Roy,

If surgery does not remove all the cancer as evidenced at the 'Op' or as suggested by subsequent PSA tests, it would indeed seem sensible to have the best possible scan to help try to locate where the cancer has spread prior to having RT. However, in Bill's case, he has already had RT, so it is likely that he would have HT at some point which is systemic treatment, if his PSA continues to rise.

Barry

User

Posted 20 May 2014 at 23:54

Hi Barry

Sorry missed that RT had already been had, must be the time of night. I have amended my post.

Thanks for pointing it out

Roy

Edited by member 20 May 2014 at 23:58 | Reason: Not specified

User

Posted 20 May 2014 at 23:57

Carol

User

Posted 21 May 2014 at 07:28

Many thanks for your reply Roy and for the good advice on keeping myself proactive. My next step is to wait for 2 months to see how the PSA rises and then I may have to have HT. (The side effects of that worries me). Sincerely hope that you get good news after your RT treatment. Best Wishes.

User

Posted 21 May 2014 at 08:36

Bill,

It is obviously a worry and there are never any guarantees. Advising and comparing is complicated by the many varieties of PCa and so what happens to individuals does vary. Having said that many people survive for long periods, measured in years not months even with spread which you are not reporting yet. I was G9 and with bone mets when diagnosed over 2 and a half years ago. HT has kept further developments at bay for now and though there are side effects for most they are manageable. So don't despair you have every chance of rebuffing this for some considerable time!

User

Posted 21 May 2014 at 12:48

Hello Paul,

Many, many thanks for your reply. I was worried sick yesterday when I got the result but feeling better today and confident that I'll fight this all of the way!!!!

Appreciate your kindness and wish you all the best.

Billy

User

Posted 21 May 2014 at 13:37

Hi Billy

My hubby has Bone mets and lymph spread and is a. Gleason 10 and he was diagnosed 3.5 years ago. In a way it's a milestone I never thought we'd see, but hoped we would of course. He's still up and around and currently In a well phase, for which I am eternally grateful. I believe the variety of PCA and your own genetics play a part in this, so no one person is quite the same, but we are hoping for much longer and a good attitude to it ll definitely helps

Good luck, please let us know how you get on.

Love Allison

User

Posted 21 May 2014 at 19:35

Hello Billy,

Sorry to see the recurrence after treatments. Always a risk with the higher Gleasons unfortunately.

I was diagnosed G9 with a psa around 250 & have turned the ten year mark. Others here have done equally well.

I believe diet changes helped my case & if you look at my Profile you will see some of the changes. I'm convinced this has slowed progression .

Up to you whether you follow suit but once achieved, the changes are not that difficult. Eating out is more problematic but many eating places will adjust to requirements & if not - move elsewhere http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif.

HT can be a downer. Energy levels may fall but otherwise it is manageable. It is possible an intermittent approach may be used in the future to help with side effects.

I hope you don't feel the surgery/RT was wasted. You have de-bulked the primary tumour & some evidence suggests this to be advantageous.

Let us know how the next test goes.

User

Posted 22 May 2014 at 10:19

Hi Billy,

It's John here, your "Beatson buddy". A belated welcome to the forum. As you can see, you are in very good company. I've nothing to add to the comments already made as we are already in contact.

Stay positive http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Kind regards,

John

User

Posted 22 May 2014 at 12:34

Best wishes, Fiona.

User

Posted 23 May 2014 at 08:09

I agree with Fiona, I think regular scans (as stressful as they are - awaiting results) should be given to everyone as a double check on this sneaky disease, at least once per year per patient. That way they can give peace of mind to 'breathe a little easier' or attack any movement with a treatment as early as possible.

Best wishes to all xx

Alison

User

Posted 23 May 2014 at 09:03

Thanks Alison and Fiona for taking an interest in me. I had scans last August before my operation and they were all clear. Because the PSA is very low (0.2)

My oncologist told me that it would be unlikely that anything would show just now and so decided to wait for 2 months to see if the level rises and have scans done then. I will keep you informed. Kind wishes to you both.

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