Chemo. . . Zolodex etc.. . . New here.

Hiya 

Warm welcome to the club no one wanted to join :-/

At least you got the surgery part completed - quite a few now are having surgery postponed / delayed and going onto oestrogen reducing meds until all this coronavirus situation eases.

If you weren't told, NST just means of 'no special type' and it is common for tumours to be a bit larger than first thought.  Chemo can be delayed for quite a while; in fact some have the hormone therapy instead of chemo if they are chemotherapy compromised.

Zoladex can be either monthly or 3 monthly at a higher slow release dose but I have no idea which option is better for any side effects, so hopefully you will get some other replies about that 

I assume during a period of time on Tamox and Zoladex the lab will be freed-up to continue Oncotype tests and you will get the oncotype score and a decision on your chemo could be made.

Hope this is of some help for now, take care, G n' J

Thanks for your reply.

I had no idea there was a chance it would be bigger or change grade so that came as a shock.

Do you think I should call up and ask about the chemo and test. . The conversation was just you would of had them but not now having them two things. . .off you pop and the gp will sort the other two things probably take a few weeks call them in 2 to chase it up. , radiotherapy will be in touch probably be a month so.  I feel a bit abandoned really if I'm honest. . . Like yep cut it out now clear off I'll see you in a years time.  

Hi

tbh there is only 4mm difference between 16mm and 2cm, so they were fairly close with their original 'guesstimate' considering they were only using imaging to size it

You could make a list of questions and give them a ring Monday when there is more chance of speaking to someone who can give you the info. You need to know what they have planned for you, if only to ease any 'what if' concerns you may have. Assume you have the number of your breast care nurse ?  and also have your 5 year free prescription exemption card from your GP ?

Know what you mean about lack of info - If you don't ask you don't get but when your head is full of fog and you can't think straight it is only later on you think of 'stuff'

Main thing is the cancer has been removed, your nodes are clear and all the other follow on treatments are to reduce risk of recurrence.

Hugs, G n' J

 They said over 2 cm didn't give a exact figure. . Like wise I asked what stage it was but they were reluctant to answer. . . Said they don't really use stages any more as there are just so many more things to think about? I am writing a list to call the breast care nurse with. That's a good idea. 

Thank you. X

They also said about gene testing but didn't mention that at all at my apt,  I get free prescriptions any way due to diabetes so not sure if I need to do anything there ( late onset type 1)

Hi 

You are right, they don't tend to use grading now. Grading used to signify tumour size but an aggressive cancer type tumour can be far smaller than a slow growing but much larger tumour; so now it usually only refers to how the cells appear and the rate they could multiply at. The main things they look for now are receptors ER/PR and HER2, lymphnode and/or vascular invasion.  J's was only 8mm but was found to be HER2+ meaning mastectomy, 6 x chemo, 15 x herceptin for 12 months, radiotherapy and 5 years of letrozole.

If your diabetes prescription exemption is for 5 years it will be the same one so you shouldn't need to change it, but your gp may add BC to the reasons for needing the 'free' card.

It may be with all this coronavirus issue gene testing (brca ?) may get forgotten about, so if you feel you may want to get this checked do ask about that as well - they sometimes call the Oncotype test 'gene testing' as they test 21 genes - so you might want to clarify which type of gene test they were referring to ?

Take care, G n' J