What to expect?

Hi Davo 

T3c, cancer just outside the gland, u may be better off with RT and hormones.

Ask the surgeon how confident that he get get rid of all cells with surgery. Otherwise u could need RT as well if cancer returns or not totally eradicated.

One thing though, obviously u can have RT after surgery but very different the other way round, surgery after RT.

It's a difficult one, see what others say.

Steve 

Hi Steve & thanks for your reply. You've sort of hit my concern right on the head in that RT after surgery is an option but not the other way round. The CNS has said if I go for the surgery it is likely I may need a short go on the RT to "finish it off".

If I'm honest, I'm frightened of not "being me" more than anything. Not sure I've explained that very well, but I'm quite happy in who I am (pretty much!) and would like to remain that way as much as possible.

Davo

Possibly you are concerned about having your prostate cut out??

That is why I went for RT even though I knew I couldn't have surgery after, a gamble I was prepared to take.

Even though u can have RT after surgery it means two treatments so more potential side effects, not always though

RT is simple no lasting side effects although u would need hormone therapy as well for some time which can produce side effects.

I admit not easy , do much research before deciding also see what the experts say, don't forget though, the surgeon will obviously suggest surgery, at least yours has been honest and said that RT may be needed after

best wishes

Steve

If I'm honest, I'm more scared of leaving it in than taking it out!

I think it's the potential side effects of the hormone treatment that bothers me.

It's a bit like being asked to choose being either bitten by a dog or falling off a bike into stinging nettles!

Basically, I need the "least worst" option...

Ok, that makes it a bit easier for you then, go for surgery , RT is still there if u need it , not everyone suffers in a big way with hormone therapy,  whatever u go for there will be some side effects  lets see what happens with your appointments this week, see what they suggest, come back on here when u know more

Hi dmh

Just some general advice that we were given and found really helpful. If possible try to take someone else with you to appointments as having another person listening (and ideally taking notes) can catch information that you miss or forget. It's worth starting a notebook that you take to all of your appointments to write down important information. For important consultations about new treatments you may want to record the conversation on your mobile phone (after checking with the consultant that they're happy for you to do so).

For any suggested treatment, we found the TBRAIN acronym really helpful for making decisions -

T Do we have TIME to discuss this, think about it and get more information or do we need to act urgently?

B What are the BENEFITS I can expect to see?

R What are the RISKS?  

A What are the ALTERNATIVES?

I What is my INTUITION /gut feeling about this? You can share your hopes/fears with the consultant and others(like members of this group) to check how well founded they are

N What if I do nothing?

Hope that's useful for you in trying to get your head around all the information. I'd also highly recommend the Macmillan Helpline 0808 808 00 00 for talking things through before and after appointments. Open 7 days/week 8.00 - 8.00. They've really helped my husband and I to understand treatment options and also to prepare for difficult conversations with medical staff.

All the best

PatienceP

With Hormone Therapy the side effects wear off in time after finishing the Hormone Therapy so it is a hard choice and depends on how long you are on Hormone Therapy.  I was on Hormone Therapy for 9 months starting 1 month of RT after 6 months on HT and within a year after stopping probably 6 months I was back to my normal self in every way - in fact it scared me that I was able to get an erection so soon as I was worried the rise in testosterone would cause the cancer to return or it hadn't actually gone - thankfully on my first 1 year appointment after completion of radiotherapy - so 9 months after cessation of HT my oncologist put my mind at rest.  That was nearly 6 years ago and PSA undetectable ever since.  as far as exercise and bowel and bladder function I was back to normal within a couple of weeks but upset after 4 months by having an endoscopy which iritated the area in the rectum already irritated by the radiotherapy - the proctologist actually showed me on the screen where the radiation had slightly irritated my rectum.  as the need for an endoscopy had nothing to do with the cancer and found no problems I wish I had elected to wait more than 6 months after the radiotherapy before having it done - infact I was amazed the appointment came through so quickly for it.

My Stats were PSA 13 Gleason 7 (3+4) T2N0M0 but at MRI it was noted that the tumour was pressing on the back of the prostate and microscopic cancer cells could have already escaped - which would not have shown up on any scans so it went up to probable T3 N0M0 and I was advised by both urologist, and oncologist to go for HT and  Radiotherapy as that would hit the whole area and get rid of all the cancer cells int he whole area without having to go for two lots of treatment which would most likely have a lasting effect on bowel and bladder function and other functions as well as when having radiotherapy after removal there could be slightly more collateral damage to the surrounding area especially to the bowel in my case and bladder depending on where the cancer cells that are left are situated.  It is a tough choice as to be honest I wanted the prostate out but I went with their recommendations in the end and I am glad I did.  I also found a radiology oncologist/surgeon - a professor at a good teaching hospital who would carefully pinpoint the radiotherapy by the use of fiducial markers (three grains of gold about the size of a grain of rice each) inserted into the prostate to avoid collateral damage to the surrounding area and this definitely paid off. He also agreed that he would be able to do a further operation if the radiotherapy failed but he was confident it would not - I have also been in contact with a man who has had an operation after radiotherapy from this consultant and this went well.  However I think it depends how soon after the radiotherapy and the competence of the person undertaking the operation I know this guy was probably amongst the best in the country so would absolutely trust him but don't know how many others could or would do an operation after radiotherapy.

You may find it beneficial to read the pamphlets in the  "Prostate Cancer Toolkit" available online at Prostate Cancer UK - these are a great collection of pamphlets explaining most things that are hard to understand at this stage.  We also found it very helpful speaking to the Specialist Prostate Cancer nurses on the Prostate Cancer UK  free phone helpline on 0800 074 8383  lines are open Mon - Fri 9am - 6pm and Weds from 10am to 8pm  best to check these numbers on their website as they may have changed.  You can also e mail them and they usually answer in 48 hours via their website.

All the best.  We all know how difficult it is at this stage and how difficult it can be to make up your mind as no one can do that for you and consultants generally try not to sway you or they both try and sway you to go with them - ie a radiologist will talk up radiotherapy and a urology surgeon will talk up removal - so making it harder to make your decision.

Hi all & thanks for all your advice- very useful  

We met with the oncologist today and she recommended that given my age and the fact it doesn't seem to have gone beyond the gland wall I would be better off having the surgery. 

We're meeting the urology surgeon on Friday morning so fingers crossed. 

She did say I was phenomenally lucky to have caught it so early- if it had even been just a year later then we'd be having a very different discussion. 

I don't think I'll ever be able to express how grateful I am to my better half for booking me onto the psa screening test back in June...

Thanks again for all your replies, 

Davo 

That's brilliant dmh.  All the best for tomorrow and here's hoping all goes well from now on.  Catching Prostate Cancer early is the best thing. Your duty now is to tell all your male relatives and friends to have regular PSA blood tests so that if they should get it they are caught early too.

Well we met with the surgeon on Friday and he was fantastic. Explained that the tumour is currently about 11mm and is pressing against something (can't remember what!) but he is confident it hasn't escaped. He's very confident surgery will cure it which is exactly what I wanted to hear.

The surgery is done using a robot & all being well, in about 4-5 weeks I should be prostate free...