Hi I have just registered to join this forum. My secondary hotspot was found and identified in Feb this year. I had what I thought was unresolved groin strain for about 4 months then had 2 episodes of severe but short hip pain at night. This led to xrays closely followed by a referral to orthopaedics due to a suspicious grey area at the lesser trochanter. I found out afterwards my xrays were red flagged. The diagnosis was an osteolytic lesion. Lots of MDTs later I - finally - got biopsied 26 April followed by surgery 1st June at Nuffield, Oxford. Had a hip replacement plus an endoprosthesis - the top of my femur was excised and replaced with ‘cement’. All good so far. Surgery was considered curative. Unfort. I during that op staph aureus got into the wound leading to a DAIR aka 2nd surgery 2 weeks later. I am struggling to find anyone who has experienced this with whom to compare my healing as not only was excising the tumour something that does not appear in the narratives (well, twice in the untold numbers of online narratives I read trying to research this) but to have to have another operation for an infection 2 weeks later on top of that and not surprisingly - and indeed very fortunately - I can’t find anyone with whom to compare myself. I have run out of energy and focus and getting more depressed each day. No one seems to be able to tell me anything including my surgeon. This clearly doesn’t happen often (1% of the time) so I have no anchor. Can anybody help pls?
Hi Debbie I’m sorry you are having such a horrible time . Have you joined the secondary private group ? You may find someone with similar experiences there . I will post you the link x