Just needing to offload!!!

Hi Wassyferret,

I don't have any experience of triple neg or genetic testing, but hopefully someone will be along soon who does.  With regards to your appt, it sounds to me like the clinic was overstretched and as such there was no time to allow you to ask questions.  It's  not acceptable though for your dr to give you a heap of information and then pack you off.  Do you have a named breast care nurse you could ring tomorrow?  I found mine extremely helpful and happy to help answer any questions I had.  Failing that I would ring the drs secretary and explain that you need some clarity around the information you were given.  

It's hard to do, I know, but try not to form your own ideas of what lies ahead until you have had things explained properly.  Instead focus on what questions you have and write them down so you are ready.

Hopefully others with more insight into triple neg etc will be along soon.

Gail xx

Hi

Sorry to hear that you had a rushed consultation, which didnt give you time to ask questions.  My first onc appt was just like that too.  The onc was keen to move on to the next patient appt. I can appreciate you must be feeling confused and scared.

Mine was also similar in that - like you - I was told surgery was fine, that got out all that they could see, wound is fine.  I'm triple neg too.

However they didnt mention the genetic testing.  It was me that bought it up.  She didnt want to know - said I didnt fit the criteria.  So if you have been offerred it, or at least they have mentioned it too you then that is good.  I want to have it done (as I have 2 daughters) and now feel I am going to have difficulty getting it.  So if I were you I would feel it were a positive thing that they have talked about it with you and you wont have to fight for it.

Its easy for me to say, but please try not to feel too depressed about it all.  You would probably feel better if it had been handled better and you had been given more time.

Can you ring up the onc nurses and ask them your questions.  Hopefully they will be able to put your mind at ease a bit. They might even give you a nurse appt so you can go back in.

Also, you should get to see the nurse and your onc 3 days before your first chemo - so you can ask more questions then.

Triple neg means you will have different chemo drugs to most other people.  I am having Docetaxel - commonly referred to as T.  A lot of people have posted on here about having it and their side effects.   I am also on the Breast  Cancer Care site -  they have pages for each month and ladies post about their treatments.  By going on that site and the Macmillan one I have learnt a lot.  Hopefully you will too. 

My first chemo will be on Monday.  I'll let you know how it goes.

If you have any specific questions post them on here.  I'm sure you will get answers, advice and support.

Take care

Louise

I had an awful first oncologist appointment , dvh , and had to put a complaint in about her . It was dealt with and I requested to see another oncologist . I met with her yesterday and she was lovely , understanding , empathetic and caring towards individuals needs , unlike the first one . 

You can complain , or just request to see someone els .

Good luck xxxx