Further surgery and risks

I really feel for you, , and fully sympathize with your reaction. Perhaps wait until you've seen the surgeon before the final decision, but I can fully understand your current decision. Take care, (((hugs)))

Hi 

Just written a big long reply and off to cyber space it went !!

To recap I think shielding has removed a lot of the support networks that really help during such difficult health issues . My mum had a recurrence after her very first scan . It was such a blow but we were able to go on holiday , recover a bit and that all helped to get a handle on things . Her support structures were able to be present . I am hoping some of this returns in the near future but I would not underestimate how hard that has been for you . 

I do keep in mind the oncologists are delivering the very worst of news however we did find quite a difference in the two specialties. The words “ blood bath “ and “die on the table” had slipped out the oncologist mouth . ( ten years ago) However actually meeting the surgeon was very beneficial. Yes , he went through the risks but was also able to say how often he encountered them . That put things into perspective and allowed us to assess the risks a bit further . In the end my mum had a surgical complication we did not even think about . She gained three stones in fluid . Had to wear maternity clothes for six months until the functions adjusted . 

We also had the opportunity to chat through what would happen clinically if she did not go down that path . Other options , but also for us would she require potential emergency surgery as we would prefer a planned procedure with a team of highly skilled surgeons to that . We had space to ask all these questions and weigh it fully up . 

I think you have had some of the information but not all the detail . Others have also reported being told of the possibility of damage to muscles and nerves but again the surgeon might be able to give you insight into frequency.

In terms of insight we have people here on the forum who live life with two bags and if you wish to chat through realistic expectations with them I can tag someone in . 

Realistically from diagnosis it took my mum a full two and half years to start scanning well and living life with less intervention. At that point the balance came back .

Whilst she has had one other recurrence it was a complete walk in the park . Two days in hospital and home . No further treatment .

The meeting with the surgeon was also hard , we all had a headache but it was much more detailed and gave more direction  and clarity . 

Not easy decisions for sure .

Thinking of you .

Court