Radiotherapy following Hormone treatment

User

Posted 30 Nov 2014 at 21:24

Hi Geronimo, I am a relative newby here, I was diagnosed T4 N1M1 a month ago. My PSA 6 weeks ago was 342, last week it was down to 65 on hormone tablets with my first zoladex jab instead of the tablets 3 days before the last PSA test. I am 49, quite fit(still running 35 miles+ a week) and am generally healthy.

So my question ( or statement) is that I have been put on zoladex, bicultomide(. One tablet a day) and am starting chemo for 18 weeks in jan followed by 6 weeks RT. I know my scores are different to yours but no one else in this thread appears to have had chemo so ask the quack next time you see him why not for you ? I don't know enough about stuff yet but it appears that the hormones shrink it, the chemo shrinks it more and deals with any spread outside the prostate and then the rt will zap the hopefully tiny c in the prostate. My biopsy only had 6 needles as the doctor said he could not miss the cancer, he was right, all 6 had 100% cancer in them. Perhaps I am getting chemo as it has spread to lymps around my body ( not bones thankfully) so my statement may not be relative to you but I think it's still worth getting the quacks on record in case they accidentally overlook a chance no matter small. Finally, I also echo what was said about the quacks, I too am lucky enough to be near the Marsden in Surrey so do keep asking and get as many opinions as you can if u don't think your quack is at the top if his game Good luck, Kev

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 12 Jan 2015 at 13:33

Hi Kev and Chums,

Latest Update following my visit to Onco Man just before Xmas.Apparantly, I am not a candidate for radiotherapy after 13 months on Zoladex,, due to High PSA count at outset(264) and a Gleason 7 with a negative Bone Scan in January 2014. Surprisingly, the onco man suggested other scans pointless at the moment since the PCa already outside the prostate and spread of micromets likely. Thus my therapy is to continue with 3 monthly Zoladex implants, hoping for further reductions in PSA numbers below my current score of 6.3. I have moved from 3 monthly appoints with a review in 6 months. nothing else is on offer, eg chemo/ RT/scans until PSA numbers start to go up. Then " we will deal with issues"

Having looked at this website and other folks with similar scores, it appears this is the therapy for this postcode.

Expecting a letter from my onco to clarify the strategy.

Regards Geronimo

User

Posted 12 Jan 2015 at 14:15

Ouch! That's a poor decision you have there Geronimo.

My capsule had split on diagnosis and the assumption was that even though nothing could be found there was a destinct possibility that micro mets could be scattered around.

I still got my 72 grays of RT though.

Is there any was of appealing the decision?

all the best

Kevin

User

Posted 12 Jan 2015 at 17:27

Hi Grant,

I have to agree with Kevin. That's a poor decision. I wouldn't be at all happy with that.

From what you say, I am stunned that they won't give you RT.

My own diagnosis was T4 tumor, with spread into pelvic wall and floor, PSA had been 182, bone scan clear. and I was given 74Gy of radiotherapy within five months of the diagnosis, and while on Zoladex,

Now, almost 10 years later I feel sure my RT was delivered accurately and made a big difference to my outcome.

Current treatment is intermittent hormone therapy..

Perhaps you should ask to see another oncologist at another hospital?

All the best,

George

B2PCa

User

Posted 12 Jan 2015 at 19:45

Grant, please see your GP and ask for a referral to another oncologist for a second opinion. You won't know whether your specialist is being over-cautious unless someone explains to you clearly why RT is not being offered.

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

User

Posted 12 Jan 2015 at 20:17

This leaves you with a huge ' What if ' to bear. Definitely time for a second opinion. I don't know how deep your pockets are but at least a private consultation with private treatment if considered useful. Might not cure certainly but could buy you extra years ?

Without adequate scanning to rule in or out , I don't see how Onco can tell how much psa was inflammation & how much was cancer produced on your diagnosis figure.

My R/T at a psa of around 250 certainly helped me.

Surgery years later bought more time when R/T had failed.

User

Posted 12 Jan 2015 at 22:44

I couldn't agree more with the above comments, don't just accept that you are not suitable for RT as it maybe that your area have a policy that with a PSA of X is the cut off point for RT and could be down to financial constraints, so even if you have to go outside your local district to find the treatment you require do it. I am afraid sometimes you have to make a fuss to get heard, so whatever it takes do it, it's your life you are fighting for, so don't take no for an answer.

Good Luck

Roy

User

Posted 22 Jan 2015 at 18:18

Hi Roy, Rob, Lyn, George, Kevin,

We are on same wavelength, More bloods and appointments next few week, latest letter from onco received today says, "the patient is likely to have micromastatic disease and any treatment to his prostate gland, is unlikely to be curative", Moreover " if his Psa does not rise in near future and repeat staging investigations show no evidence of Extra Prostatic disease, we could consider a local treatment to his Pca for local control"

I guess that is progress having seen top notch Onco man with this second opinion. I deduce I have to go with this, but looking at the blogs on this website, there seems to be different strategies to tackle the affliction in different postcodes. I will report further! In the meantime I feel great, getting used to Zoladex implants after 14 months on the regime and I won £9 at golf with my pals the other day,.

Thanks for your comments
Geronimo

User

Posted 15 Apr 2015 at 18:31

Geronimo update 15 April 2015

Latest PSA bloods show further drop in PSA to 4.6 from start point of PSA 264 in November 2013. The plan from MDT team is stay with Zoladex HT for time being. RT not on offer yet and Appointment with consultant next week. Now well used to HT, no flushes, some man boobs and weight gain of 7 kgs, more golf and exercise to get back in trim. Will report further after May 2015 appointment

Regards to All

geronimo

User

Posted 09 Jul 2015 at 20:36

9 July 2015

Progress; Psa Numbers have dropped to 3.9 on Zoladex La. The plan to continue with HT until Psa Numbers move Up. Some bone ache, no hot flushes, man boobs, put on 6kg in weight mainly in belly button area. Diet and exercise, more golf etc getting weight off gradually. Feel ok, but need to have a combat snooze after golf and gardening. Getting used to Zoladex and fatigue implications. Hang on in there fellows sufferers, it does get better.

User

Posted 15 Jul 2015 at 20:30

Hi Geronimo

Know what you mean about the Zoladex ,I put 1/2 stone on mainly around my abdomen at 73 its hard to lose. Play crown green bowls , cycle and walk. Had R/Th and now finished with the Zoladex , although still get the flushes. My PSA is down to 0.30
Best of luck with it all

KEEP POSITIVE and CARRY ON

Alan

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