Hello. I have been following many conversations on this forum for the last four months and am so impressed and grateful for all the kind and supportive people here. So many of the conversations have already helped us both, I read them and share anything that may be of help or reassurance to my husband. So thank you everyone.
My husband was told in February, during a telephone conversation with an oncology nurse, that he has stage 3 prostate cancer, Gleason 7 (4 +3), following MRI on Dec 31st and biopsy on Jan 31st. During the conversation she explained about possible treatments but that he would be referred for a PSMA PET scan first to check that it hadn’t spread into the bones or lymph nodes. She did apologise for giving this information over the phone and also explained that the usual 2 week wait for the scan at that point was 20-25 days. Since then he has received a letter from the NHS apologising for the delay but still no appointment. Phone calls to appointments go straight to an answer phone message. In frustration I contacted the specialist oncology nurses 2 weeks ago who checked he is definitely on the list (along with another 100 men at that point!) but she did say the wait is now 8 weeks due to a National failure in the imaging?!
Obviously the delay is adding to our stress levels significantly as we’re both at the stage now that we just want the treatments to start and trying not to think what maybe happening in his body in the meantime. Is anybody else facing such a long wait for a PSMA scan?
Thank you in anticipation.
My PSA was 182 on diagnosis. The urologist thought it had spread outside the gland from the MRI but not sure. The oncologist thought it had not but she said to make sure she would zap the lymph nodes as well to make sure with the RT. The treatment was given "With a view to be curative".
I hope this helps.
Kind Regards - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Is that the only one he is on or did he have the bicumatide and anither injection or is he just getting treated with aberitone and radiotherapy. It’s so funny how everyone gets slightly different treatments.
My husband was 30.49 psa when first started he had it checked on Friday so will phone to see what results they were.
I think he has had a couple of flushes but I would say he starting to feel bit more tired and possibly getting a bit irritable but maybe that just putting up with me. 
.
xx
I'm not sure what's going to happen as we haven't look past RT at the moment, I guess we are hoping for a remission of some sort and maybe a watch and wait/cure??? Though three years of HT was mentioned at one point. I'm watching people that have had or are having RT like Millibob Worriedwife to see how they are getting on. (both looking good) it's excellent on this forum to learn how others are navigating their way through. I initially went into flat panic at the diagnosis, but by keeping informed and connecting with others it made me realise there are lots of options available.
I think you can relax at the moment as your husband is getting the right treatment and it is working, as long as the PSA is going down and he's not having any over whelming side effects you are in a good place.
