Anxious wait for results

Hi Grantyo12, I too was 56 when diagnosed with locally advanced PCa with mets to iliac lymph nodes in pelvic area and put on bicalutamide followed by HT Injections.(2 years ago). I totally understand the anxiety and worry you are going through, take a breath, you have had your preliminary diagnosis and treatment has started so the cancer is going nowhere only hopefully into retreat, You have your final test, your biopsy, next Tuesday then your oncologist appointment May 20th, this is all perfectly normal, your biopsy results can take up to 2 weeks, then that gives your MDT a week to look at all your results and put together the best treatment plan for you. I was on prostap HT, so couldn't say if zoladex was responsible for the pain in your groin, but maybe talking to your Macmillan nurse will get you answers.PS i would always talk to my CNS before my GP regarding cancer matters, I know me saying don't worry is not going to help in the slightest, we all did, but best wishes with your results, take care.

Eddie

Hi Grantyo very sorry you’ve had to join our club,and it’s a worrying time for all but your in the system now and they’ve started the process,I would give your Specialist nurse a call they are great and relay your anxiety,I know how you feel as I’m awaiting to start RT treatment and it’s the waiting that’s worse,everyone here is here for you and it’s comforting speaking to fellow patients who are going through the same journey xxx Robert 

Hi Grantyo12 .

I will pick up on the issue of the pain you are experiencing. When you first start on hormone therapy it induces a testosterone flare in the body which can result in temporary pain. This flare is dampened by the Bicalutamide tablets which you were initially given. Research indicates that the pain levels peak around day 3 after being given the injection and should resolve after a week as the testosterone level drops to below its initial level. The testosterone level will then continue to go down and the hormone therapy will put the cancer cells into hibernation wherever they are in the body. This then gives you time to sort out your treatment plan, safe in the knowledge that the cancer is not spreading. Hormone therapy does come with a range of side effects, the main one being fatigue so try and get as fit as possible as this helps to reduce them and gets your bodies own healing mechanism to help recover from any treatment you may be given. Waiting is the difficult part for all of us as we just want things done, and we want it done NOW, but take comfort that you have already started on your treatment pathway. Please come back with any questions no matter what they are and someone is bound to get back to you who has been there, done that and worn the T-shirt.

Thanks that’s reassuring.

Thanks, I’ll give the McMillan nurse a ring on Monday.

Thanks, yes I have pain in all sorts of places so some kind of flare up might explain it, I’ll talk with the McMillan nurse tomorrow.

Hello Grantyo12  A warm welcome to the online Community from me too - I notice you have already had some cracking advice so I will just wish you all the best for the biopsy on Tuesday.

As well as ongoing support from the Community if you have any specific medical questions you can always use our "Ask A Nurse" service where you can put questions to a Macmillan Nurse - the link is here-

Ask a Nurse 

Please allow a couple of days for a reply although last week they were answering them on the same day.

There's also our support line on 0808 808 00 00 (8am to 8pm 7 days a week) for any additional support you may need.

Best wishes - Brian.

Hi Grantyo12 , firstly welcome to our Club!  I was diagnosed PSA 74 and lymph/pelvic spread so quite similar so far, that was 7 years ago. Bicalutamide for a few weeks and 3 monthly Zoladex from then on.  I am much older so you have youth on your side.  Any side effects just worth mentioning to your team as others have already said.  I am surprised that you have your appointment so soon!  At this stage HT is all you need for a few months, so no worry there.  Good luck with the scan and biopsy and let us know the results, we can then help further.  David

Hello Grantyo12,

I had a scan on 18th April and was given an appointment of 22nd May to review results. I was horrified to think I had to wait so long and contacted them to ask if I could get an earlier appointment but heard nothing more.

However, after the scan was completed (and presumably results sent to the consultant) I have received a revised appointment for 9th May. Still a while to wait but much better than anticipated. I think they probably routinely just put a date in for review and your consultant may well bring yours forward once scan results are to hand and their MDT meeting takes place.

Unfortunately these days I think you have to politely push as hard as possible to get reasonable progress so I'd keep on top of it if I were you if nothing happens. 

In my case the hospital sends details of test / scan results and MDT meetings to my GP who puts them on my medical record straight away. I have online access to these so can see what's been said before appointments which help me to be prepared and formulate questions.

I hope you get good results.

Thanks, that’s a good idea to get them on the nhs app, presumably they have to give me access if I ask them. At the moment on the nhs app all I can see are appointments and medications. I would like to see the notes from the original mri I had.