Has anyone with Gleason 8 or 9 said no to radio therapy?

Dudley - hubby isn't here at the moment but if my memory serves me right his PSA is something like 0.1. I know the reading remained stable throughout his treatment. Expected to rise a little now as the treatment has ended.

As for why I'm still involved in the forum, I'm very involved working for a Charity and running a support group for sufferers with another medical condition, was looking up something entirely different on the Pat.Exp site and came across the PCa one by accident, noticed Peter's heading to his post and thought my reply might be reassuring.

Mrs O

Currently, PSA scores and DRE are the most reliable ( non- surgically invasive ) means of determining the degree of cancerous activity remaining within the prostate.

For your Husband to have a score of " something like 0.1 " just three weeks ago, must be most encouraging.

Also Him being 'discharged' would seem to predicate that his MRI and bone scans do not reveal any traceable metastasis. And I wonder, did he have those scans, and with clear results ?

But then he has just three weeks ago received another hormone injection. Hmmm, it's puzzling...and without being fleshed out with clinical detail, sorry, it is not very helpful to us.

Also from what you say, your Husband ( seemingly, like yourself, another name-less entity ) has been receiving treatment for 18 months to two years.

How curious then, that given both your apparent underlying philanthropically curious nature and the prominence of this site on the www. you did not discover this site, until " by accident " just a few days ago.

Regards

Dudley

Dudley

I'm so sorry that you have found my reply "not very helpful to you". On the contrary, I initially posted in the hope that it would be encouraging for Peter and others in the early days following a diagnosis of PCa to hear of someone who had been diagnosed, gone through treatment and recovered.

Yes at the outset my hubby had all the routine investigations such as CT and bone scans and no spread was found.

Nothing "curious" at all about me only recently finding this site - I have already pointed you in the direction of the very active Prostate Cancer UK Message Board, and also the Prostate Cancer Charity - both these gave all the reassurance and advice I was looking for in the early days following my hubby's diagnosis. I feel sure you would find it immensely helpful and informative by registering with the former.

My hubby is not much into the computer, so not involved in any forum. As for your description of both me and him being a "name-less entity", surely that is the nature of joining any forum, and I think you will find that most people prefer to remain anonymous, and I'm sure the moderators are happy with this.

I wish you well but I won't be joining in any more dialogue, especially as you have found my well meaning replies "puzzling", "curious", "not very helpful".

Hello Mrs O

Thank you for your sensibility and the wisdom of your concluding decision.

Regards

Dudley

Hi Peter,

Thought you may be interested to know that I am  7 sessions of EBRT from completing my 42. In my case on completion it will have been 28 to a general area including the seminal vesicles followed by 14 of  higher intensity and focus specifically targeting the tumor itself. It is this latter stage that poses the greatest risk to the functioning of bowel, bladder and sexual organs.

So far, I have  managed O K . But there are the expected side-effects, which start to kick in and increase in severity from about end of week three. 

Fatigue is a reality as is sleep disturbance, possibly due to being hotter and sweaty at night. ( Another patient described themself as being cooked!). Also, bowel function is somewhat ' confused ' and I struggle with treatment induced urinary frequency and rectal proctitis. I am advised These symptoms May, May not persist and or become permanent.

PSA will be taken at three months post treatment and only that reading will determine success or otherwise,  the indication that hormone therapy is required.

They have advised me that they have given me the max EBRT I can ever have in that area now, in the hope that they can get it all.

i remain positive and optimistic and am doing my best to enjoy life regardless.

I hope you are going along o k.

best wishes

dudley

 

Hello Peter,

How are you My Dear Boy ?

Well the long wait is over and your treatment is underway !

I hope you go well Peter.

Perhaps about a month or so after completion and when you have had your follow up, you might let me know how you fared ?  

In the meantime if I can be of any assistance at all please do not hesitate to get in touch personally.  My email address is: _____

I have my follow up apptmnt next Tuesday.  Apart from radiation induced proctitis ( to which I am perhaps more susceptible than most owing to pre existing low level Chron's ), I fared pretty well and for the time being at least, am still ' a whole man ' ( " Surprise, surprise, surprise !  " ).  No incontinence problems yet either.

Humour has always helped me deal with adversity and to cheer myself up one day, apart from buying myself a Suzuki GSXR K6,  I Googled ' Prostate Cancer Jokes ' . Most were  ( to my sensibilities ) rather lame and evoked no laughter. But amongst them, was this gem :

' If pee-ing your pants is ' cool ' consider me Miles Davis ! '.

Best Regards to you and your Wife.

Dudley

Patient Moderator Note: I have removed an e-mail address from this reply as it is the policy of patient.info to not publish these within the forums. If any user is interested in this removed information they should contact the author via the Private Messaging system requesting such. Thank you for your cooperation.

patient.info/forums/discuss/private-messages-226361

 

Hi Peter

I was diagnosed with Prostrate Cancer 7 years ago. I had gleeson scale of 8 and stage 4 cancer i was given 12 months to live. I had the radiation treatment and yes it wasnt nice. I had 4 week treatment. It was faily stable untill the hormone treatment stopped working and it started to spead. i take the view my friend that ill take what ever comes along if i want to stay alive.

In November they said 12 months. then i started on abiraterone which in US dollars is  around $1400 a week. its free on the NHS. so im now in remission its stoped where it was. I dont know how long that will last for. but my advise to you is go for the radiation treatment it cant do any harm other than help. with out it you might not get the five years you need.

To beat the damn thing you have to fight on a daily basis. no good feeling sorry for your self.

good luck peter

Peter apart from effusing goodwill in your direction, I should definitely have mentioned that something my Oncologist  said had helped me get through Radiotherapy as well as I have,  was that I had walked every day for between 3 to 5 hours. Mainly just strolling around Adelaide CBD and suburbs in the late autumn sunshine. ( For 9 &1/2 weeks I was staying in the Cancer Council Lodge Mon to Fridays as the RAH is 85 klms from home and there was little else to do). One day I covered 11klms and climbed 1000ft. That is not a boast by the way.

I heartily recommend this and full hydration. You said you were pretty fit and I would imagine you would go well. I did the bulk of the distance before treatment each day and then 2&1/2 klms back to the Lodge afterwards. Then rested fully with itunes and piped free Foxtel Premiere. 

Go well Peter !

kind regards

dudley

 

Hi

november 2010 I was diagnosed with Gleeson 9 Prostate Cancer.  MRI scan showed the cancer contained within the Prostate, following surgery the tumour was downgraded to 8.  My team had said from the beginning that I might need radiotherapy and hormone treatment following the surgery.  After a few months my PSA reading started to rise (with no prostate). I was immediately started on Zoladex and December 2011 had a course of Radiotherapy at UCH in London.  The treatment was on, what was then the latest technology, the Truebeam accelerator.  The treatment seemed to be less debilitating than some of the others experience.  Since radiotherapy and the hormone treatment my PSA has been zero.

my real advice is listen to your specialists, if you trust them.  If you don't trust them then change them.  My consultants have been brilliant, even when I changed from Private medicine to the NHS, they transferred me and I still see the same Consultants.  The only change is the coffee is not as good!

hope this helps you

Thank you mrs O for your information. there seams to be a general idea that we are all the same. and peoples personnal experiences are similar. For 2 years my PSA was 0.01 and this probably delayed treatment because to much is put into PSA readings. In reality I dont produce PSA and therefore it can not be relied upon. i have spoken to people who have a high PSA reading but dont have cancer and people with very low that do.It there fore isnt reliable at all.

I have been on Abiratrone for 12 months.its around £900 a week and you could argue thats a lot of money to keep some one alive. ten years ago id be dead by now. When this stops working my only option will be chemotherapy which im told is unlikly to work after a life time or up to  20 years ago of heavy smoking.Who's fault was that?

We are all individuals with a variety of different experinnces and so I thank you Mrs O that it may certainly give some hope to those more fortunatly than those who are long past it.

the description of the after effects of radiation treatment are not in any way similar to mine. No pads certainly. sore yes.bleeding yes and tireness yes and time to recover yes that was in 2010 where would i be with out it.

So i dont understand why Mrs o opinion has less value than any one else.

Just clocked your post peterjames. I know its 4 years but, I am 81 with a gleason score of 9. I had 4 weeks of radio therapy and now on Zoladex. I had no proplem with the RT. Just a bit fed up with the 60 mile round trip to the Hospital. I drove my Lady came with me just for company. The Zoladex is not the best, flushes etc but hay whats the other optptions there are none. All in all very happy the way things are going. Good luck with your RT....

Hello Peter (and all others following this discussion):

I've read this discussion with keen interest, because I too am a newly diagnosed "high-risk" prostate patient. I am 66-years of age with a PSA that has risen very rapidly from a low of 1.2 just three-years ago, to its current high of 70, and perhaps most alarming of all, the PSA doubled from 35 to 70 in just the last 8-months.

A standard (unguided) 10-core biopsy performed 90-days ago, produced a total of four 'positive' cores (4 of 10 = 40% positive, 60% negative), with Gleason scoring of the four 'positives' ranging from 3+4 = 7 to 4+5 = 9). Despite making multiple requests, no multi-parametric 3T-MRI or trans-rectal ultrasound images have yet to be authorized, but post-biopsy bone scans and CT scans were both 'negative' for metastatic disease.

Other than knowing that my condition is VERY serious, and that ideally, treatment of some form should take place much sooner than later, I am nevertheless reluctant to hastily pull the trigger on ANY form of treatment (surgery or radiation, etc.), until I can gain a thorough and accurate understanding of everything involved.

For the most part, I am hearing from urologists and oncologists both, that qualified surgeons are unlikely to recommend surgery due to my age (66) and PSA doubling time, and yet, I have encountered several instances on-line where-in patients with similar age/PSA/biopsy circumstances have in-fact had radical prostatectomies.

Anyway, I am very pleased to have found this 'prostate cancer' forum (and its many contributors), and I'm eagerly looking forward to learning from others here in the weeks and months ahead, as I get closer to making a responsible, well-informed decision on a course of treatment.

My very best to all!