Am feeling really weepy today not how I usually am. Dont even know which section should be posting this under!
You see I was dx 7th may I have all results (finally) Grade 3 lymphovascular No nodes but triple negative.
The reason i am upset is…When had original op (WLE) in June someone forgot to send tissue away for ER PR and HER2 tests which are normally done as standard, because of this delay I still havent got appointment for Onc. I rang his secretary this morning and she said I wouldnt get to see him until october as he is just back of hols today and hasnt looked at my case yet. That will make it SIX MONTH since my dx!!! I know I cant do anything to change this, am just really weepy and angry about it.
Guess I just needed a good moan and feel like this is the place to do it.
Sorry you are feeling weepy,its perfectly understandable though so don’t beat yourself up about it.
Its so annoying that your treatment is delayed due to someones mistake.It might be worth writing to your onc ,very politely stating your disappointment and frustration at the delay due to their error and ask if you could be considered for an earlier appointment.A letter is harder to ignore than a phone call,might be worth a shot.
Meanwhile be kind to yourself and try to enjoy the time before your treatment begins
Thats a very long time Helen.Can you afford to ask for a one off private consultation?It should cost about £100 and would be worth it if it could be soon.Vx
Hi Helen,
I am sure it wont be long before others come along with helpful advice in the meantime I will give you mine just hope it helps!
Have you a breast cancer nurse? If you have ring and tell her what has happened and that you would like an appointment asap. If you dont have one ring bc clinic and ask to be put through to one.
This can be a long journey and you will find it invaluable if you get a little note book and keep a record. This helps if things go wrong, you will be able to refer back and give them dates and names of who was dealing with what.
Sadly you have just received a free ticket on a roller coaster. Emotions will be all over the place but you will be able to share them on this forum and hopefully gain friends and get lots of support.
Dot I wii try the letter got nothing to lose so worth it!
Horace
I would struggle as single and only income at minute SSP but if letter fails will def look into it!!
Fortunately had booked and paid (otherwise would have cancelled) for a holiday back in january and am due to go in 13 days was hoping would know treatment plan before I go, I am kinda person who likes to get head round things and thought could do this on hol and come back fully charged and ready to get on with it!!! Am back on22nd sept so will still have few weeks wait after that.
I will still enjoy holiday but the waiting is so hard as we all know!!
Have rang BCN this morning, she just said there was nothing she could do to speed things up.
Have found this site fantastic although dont post often because feel in limbo not being on any treatment but have had great advice whilst recovering from WLE and then Re excision.
Also had info about the triple neg from fellow users which have found invaluable as BCN said they didnt have any written info on triple neg.
Think am beggining to get paranoid and feel as if they are not telling me everything and I am type of person that needs to know.
I can identify with your worries and frustration at delays. Its good to hear you did ring back. Don’t stop here though. I agree with dot,I write to the hospital trust and the ONC consultant and cc in the Breast Clinic consultant.
With due respect to the BCN and the ONC secretary they may not carry the weight behind them. When I was in a similar situation I wrote a polite letter saying that it was not my fault that neglegence occurrred and that I wanted the due care I should have been given. I was successful in gaining a quicker appointment. I think they are worried about litigation if they are found to be at fault.
Good luck with a quicker appointment and I wish you all the best for a positive outcome.
