The wait

Chan 5 hours ago

4 replies
193 subscribers
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Hi everyone

I posted on here I while ago about my partner having all the scans and a high psa of 123, well the results are back in with a gleason score of 8, made up of 4 + 4 T3A N0 M0 locally advanced prostate cancer.

We have seen a urologist who has said that he cant have surgery due to his previous heart failure, and he wants to put Dave on Relugolix but hadnt spoken with anyone from cardiology about the effects of the tablet on his heart, so that was put on hold until he had emailed cardio, then they emailed the wrong cardiology department and I have had to chase up and sort this for them, only for them to say they cant say what effects they have jist sent what happened to Dave and his tablets and how he is now which has now been passed over to radiology for them to have the final say.

They also want to put Dave on Abiraterone but again we have to wait for an appointment for that. They want him to have 20 rounds of radiotherapy but we have yet to speak to the radiotherapist and im going to enquire about Brachytherapy along side the other radiotherapy in the hope that this helps evict the little intruders quicker.

Please can anyone shed any light on anything

Unfortunately both me and my partner handle things very differently I try and grab the bull by its horns and he sort of burries his head sort of speak, he seems to be putting a hell of alot on me at the mo and giving zero in return and I wont lie its coming between us big time now.

Sorry for the essay and thank you in advance to anyone with any help

Alpine Wanderer 3 hours ago

Chan said:
im going to enquire about Brachytherapy along side the other radiotherapy in the hope that this helps

hi Chan - good idea. It’s known as brachytherapy boost and is suited to aggressive cancers that are locally advanced but - hopefully- still in the pelvic area. He needs to get on that hormone therapy ASAP, so push push push. You need to strongly advocate for the decision to be made. AW

Chan 3 hours ago

Hi Alpine Wanderer im phoning every day it was Monday I discovered they contacted the wrong cardiology department, so I got them numbers and email addresses and passed them on, then rang tuesday to be told cardio where no use anyway so they had sent it to radiology and then ive rang this morning to ask of any news and still nothing im going to ring again shortly, you would think they would understand the urgency but clearly not, at every turn their seems to be a hurdle and where only in the early stages.

Thank you for your reply

Alpine Wanderer 3 hours ago

Hi again Chan , you are doing exactly the right thing by making a nuisance of yourself. Email, phone etc, and make a note of any names so you can make replies personal, requiring them to “buy in” to your dear husband’s case.
as to this “coming between you big time” , you’re doing great and he is just probably frightened at this early stage of diagnosis. Tell him you’re approaching this as his “wingman” team member and fight this battle together. You both need an oncologist appointment (not radiologist) ASAP, to get him on hormone therapy, as he has aggressive Gleason 8 (ie 4+4) coming from a PSA of 123. It would t surprise me if this includes cribriform, EPE, PNI, etc. If you write those worries in your email, they will sense that you are not going away quietly. Be polite. Be persistent. Read my bio to get more information on the subject. Do your research. Then be persistent again. Do not let them kick the can down the road. AW

Chan 2 hours ago

Hi Alpine Wanderer we have an oncologist appointment on tuesday, after i wrote my last reply to you I got back on the blower and they are now saying that they want him in on friday for an ecg and then if their happy they can give him the tablets the same day!!!! I am foaming ad if they hadnt cocked up with not reading his file about where he went for his heart problems we could already hqve the meds and he has also had an ecg less than 2 month ago but apoarently this isnt good enough they want 1 friday.

I understand what cribriform means but can I ask what does EPE and PNI mean please all i know is his is locally advanced cancer at this stage I have a million and 1 questions for the oncologist on Tuesday nevermind the radiotherapist when we speak to him over the phone the following tuesday

Thank you again for your reply

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