Time from diagnosis to treatment

Ian Sorry to hear about the time it has taken for your diagnosis.

My husband has very similar stats as we talked about before. We understood that a Gleason score of 7(3+4) put him into the intermediate risk category We were quite taken aback when we received the diagnosis letter saying that he is in fact in the High risk category because he is T3a he is in Cambridge Prognostic Group 4 which makes him high risk. There is info about this in Prostae Cancer UK online booklet on Locally Advanced PC.

I hope there  is something info in there  or someone on this forum who can help with your decision.

Wishing you well with your treatment whatever you decide.

Robina

Thanks Brian that's very kind. I may take you up on that after I speak to the Oncologist next week and find out what the plan is. Someone on another forum mentioned that with zoladex it has to be given on exact days but with DEC and Prostap a couple of days either side doesn't really matter so they would seem to be the way to go.

I hope you are recovering and feeling a bit better every day.

All the best

Ian

Hi Ian - It's no problem - happy to help any one with PC issues - having been there done that - I have had lots of help in the past and know what it's like to head into the unknown!! I know my injections have been a couple of weeks out but once you get on the hormones and they are in the system it can take years to get rid of them!!

I am amazing considering the journey I have had - even being upgraded from a Gleason 7 to a 9 but I am almost there and apart from the itchy skin I am fine.

Best wishes

Brian.

Hi Robina

I was told today that the tumour was T3 but it was fully contained within the capsule which is a bit of a contradiction but I am not going to stress over it. I have pretty much decided on RT as my tumour is 21mm and near the apex so more of a chance of continence issues with RP. Also the fact that the surgeon does not think he will be able to spare the nerves is another reason for me to give the RT a go even though I know the HT will give the same kind of problem.

Good to see your husbands bone scan was clear. Hope he does not have too many side effects from the HT.

Best wishes to you both.

Ian

Hello Ian, I am so pleased to hear you are getting very near to the treatment stage at last.  The decision between surgery and radiotherapy is so very hard for you men with lots of pros and cons to weigh up.

re hormone therapy. My husband (T3N0M0) Gleason 4+3=7 was against surgery right from the start and opted for RT and HT. we were told that one tumour was making the wall bulge and they couldn’t rule out spread into the nearby tissue although the biopsy’s from there were clear. he started with 4 weeks bicalutamide tablets in November. 2 weeks in, he had his first decaceptyl injection. He now has them every 3 months. We queried whether it’s 3 calendar months or 12 weeks and the oncologist said the former. He seemed initially like he was in a permanent state of jet lag. I’m not sure whether this was the stress of the diagnosis and the anxiety of the looming radiotherapy.

he was initially told the HT would be 2-3 years. Then he was told 6 mts. Now he is being told 18 mts. For this particular stage there is, we are told, limited research about the length of time needed. The oncologist told us that with RT and HT this a once only chance for cure and he errs on the side of caution so as not to jeopardise this chance! We have taken his advice. He also told us this is a ‘marathon and not a sprint’ and that treating PC is comparable with diabetes - a long term condition which is manageable. We were told my husbands treatment is with the intention to cure - but , no guarantees implied!

He finished the RT about 10 days ago. we were both pretty exhausted through that and have spent the last 10 days picking up where we left off last autumn when he received his diagnosis. Again, I’m not sure whether it was stress, anxiety and travelling that caused us both to feel so very tired during and after the RT or whether it was RT and HT causing my husband to be tired and me ‘coming out in sympathy’!  That said, I have become completely and totally emotional through this and anything and everything reduces me very quickly to tears - even watching something on tv!  Are his hormones rubbing off on me!M!???

suffice it to say, apart from tiredness and some bloating and wind during the RT my husband has had none of the side effects we have been warned about. 

of course, everyone is different and reacts differently.Also, neither surgery nor RT guarantee complete and everlasting cure! I know we will be anxious if any PSA test result is unfavourable!

I hope our experiences might help you arrive at a decision that is right for you. I wish you all the very best with whichever pathway you choose.

Hi WorriedWife. Thank you so much that is really helpful. Good to hear that there were limited side effects from the RT. Your OH's diagnosis seems very similar to mine and I also have the tumour bulging against the wall of the capsule. Can I ask if the RT was targeted at the Prostate or the whole bed and did they use EBRT? Hopefully your husband will start to recover quickly now and you can relax and de stress a little.

Best wishes to you both

Ian

Hello Ian

yes, it was EBRT ( guided by scan) . We were concerned when, at the first weekly review, the radiotherapist said they were targeting the prostate only and no lymph nodes!  We queried this and we were given an appointment to discuss this with the oncologist. In fact, they were doing lymph nodes at the back of the prostate but not the lymph nodes further out in the pelvis. This, apparently, can give rise to lymphomaodaema which can be unpleasant and it was judged unnecessary for my husband.

I asked about the tissue outside of the prostate. The planning of the beams is concentrated on the tumours  and then moves outside of the area at a slightly lower dose to lessen damage to healthy tissue but to incorporate areas where there may be cancer cells. This provides a margin around the known tumours to mop up potential spread. 

im not sure whether this area is classed as ‘prostate bed’, though.

hth

Thank you Worriedwife that's really useful. Hopefully I can report in on Tuesday that I have finally made a decision.

Hi everyone

Spoke to the oncologist today and after 9 months I have decided on RT. The reason for the decision was that the surgeon said he would definitely have to remove at least 50% of the nerves and the tumour is mid gland to apex which increases the chance of continence issues. He also said that if continence was my main priority then to go for RT. The clincher was the onco saying that treatment would be 7 days of tablets, 3 months of HT including the final 20 days of RT and no further HT afterwards. I was expecting more HT so I am not sure why such a short period. The 3+4=7 score showed <4% grade 4 so perhaps this has something to do with it. Maggie's in Cardiff have a getting started with RT session in a couple of weeks with a specialist so hopefully find out more then. In the meantime can any of the RT club tell me what role the onco plays in the procedure apart from prescribing the type and length of HT and the type and number of fractions of RT as I have read that the planning and delivery of the RT is done by the Physicist and Therapeutic radiographer which I would have thought is the really important bit.

Thanks and best wishes all.

Ian

Hi Ian,

Reading your post and the RT treatment you've been offered. 

I originally had 3+4 and I asked for radical surgery and 'just get rid of it' but further tests showed that it had turned "aggressive" and up to 4+5

My oncologist suggested I have RT as it would save me from continence problems.

I am having my final session 20 RT tomorrow (21/3/23), I have had 2 decapeptyl hormone injections so far (1 every 3 months for 2 years), and daily Bicalutamide hormone tablets for 12 months. 

As for how much HT and RT is given I suppose we all trust our oncology team as those with the expertise. 

I personally haven't had any issues with my team, they always have time to sit with me and answer any questions I have.

Hopefully you will get all the help you need too.

Good luck on your journey.

Regards.

Pete