I promised to update you all, so here goes. It has been quite a week as on Monday evening, hubby received a call from his CNS to say that the MDT had discussed his case again and surgery was no longer their preferred option. He totally shut down after relaying this info and nothing was up for discussion. Cue no sleep for me that night and despite me asking him not to go to work he went!!
I rang the CNS, got the answerphone and left a message asking for a urgent meeting with someone and could someone please ring my hubby back. Just before lunch, hubby rings me and starts to tell me that the surgeons secretary at Addenbrooks had rung and asked could he attended an appointment on Thursday morning and be prepared to be there all day. We were even more confused. My phone started beeping, so I told hubby I would ring him back as it was the CNS. She asked me what was going on and I explained about hubby shutting down and us being very confused as why was surgery now not the preferred route as the only result in the last two weeks since being offered surgery was a clear bone scan. Her answers totally added to the confusion as reason 1, they were no longer confident of removing all the cancer and 2, they weren't sure he was fit enough for surgery. I told her about the phone call from the surgeon and hubby had accepted the appointment. I asked if there was any news on an appointment with the radiologist/oncologist and she said it should be week commencing 11/11.
Thursday saw us at the appointment at Addenbrooks and we both felt for the first time that we were people and not a number and this feeling just grew and grew. We were given time and never felt rushed to digest things, ask questions, re ask the same questions in some instances. Our main question of why things had changed was dealt with very sympathetically and explained in great detail. Because his Gleason score is 9 they cannot guarantee that the cancer had not migrated microscopically and it is two small to pick up on the scans. Also (I'm calling it tumour 2 as they haven't said which is which) is very close to the nerves which means it isn't safe to attempt a nerve saving procedure so both nerve bundles will have to be sacrificed as wider margins have to be taken, along with the lymph nodes. There was nothing said about his 'apparent' bad health and after various tests they said he is in good shape and offered a date for surgery but would like him to still talk to the other team. We explained that the appointment with them was likely to be after the date offered for surgery. We then found out that a date had been set for the 11th, two days before surgery. We asked what would happen if the lymph nodes showed positive on examination and they said he would probably have to have chemo.
So lots to think about. The surgery is booked, but can be cancelled if after talking to the other team hubby changes his mind. And we wondered if anyone has had a NON nerve saving Prostatectomy as they were very good in making sure that we both understood that there would never be any more natural erections.
We are still confused to a degree and not at all certain that the decision reached is the right one, but it is the decision that hubby is slightly more happier with. Has anyone had a score of 9 where the cancer hasn't spread outside of the gland, as they are still saying there is no breach of the capsule but it could have spread microscopically.
Thanks.
