@loudzma
Hi,
I can only tell you my experience:
The doctor examined me, and suggested I was level 5 (high chance of malignancy) however I was then sent for mammogram and ultrasound to see if they also scored me a level 5. I understood they needed confirmation, just in case one said level 5 and the others came back level 1. When all three agreed, I then had a biopsy to see what type of cancer, what grade, if it was hormone positive or negative, HER2 positive or negative… then the Consultant talked me through the results and a plan of what would be done next. That process did take several weeks, and I’m afraid that is the ‘normal’ timescales involved.
Although this is an ‘emergency’ in that it needs fairly quick intervention, the ‘normal’ protocol means you should be seen/treated within several weeks rather than days. The medical staff can’t intervene until they know exactly what they are dealing with and the best way to treat it - no cancer, positive for cancer, lumpectomy, mastectomy, no chemo, chemo first, chemo after, no radiotherapy/radiotherapy, medications… your cancer will be different to someone elses, which is different to mine and they need all this information first.
Until the biopsy says positive for cancer, you and they can’t be sure. The ultrasound said highly suggestive and you need to be ready for that, but it is not saying definite and that is why more tests are needed.
The good news is that you are on a pathway and the information gathering has now started… the other good news is that cancer doesn’t usually grow that quickly, so there is time to get the right answers, and if necessary, treat it properly rather than dive in and make a mistake. The bad news, if this is confirmed as cancer, is that sadly waiting is something we have all had to get used to - blood results, scan results, treatment bookings…it is one of the hardest things.
I also think it is a shame you don’t seem to have been given all of this information after your initial appointment and left as worried and confused as you are.
There should be breast care nurses in the hospital where you were seen - did they give you a number to call if any questions? If they did - call them to go through. If they didn’t, call the hospital switchboard and ask to be connected to them. If you can’t get them, there should be a PALS office at your hospital, go to them and they will support you to find the right people to explain where things are at and why.
Did you go to your initial appointment on your own? If you did, take someone with you next time as sometimes the information is too hard to take in all at once, and a second pair of ears is helpful.
Is language hard for you, with technical medical terms? ask for a translator next time.
If the breast care nurses come into the appointment, ask them to write things down for you so you can take them home and read again and again as many times as you need to understand them. And make sure you have their number for anything you think of later that needs answering.
There are breast care nurses on the helpline here and it may be worth giving them a call tomorrow?
I hope you are able to get some answers tomorrow and an understanding of what you are waiting for and why - it’s always easier when you understand, although it doesn’t necessarily change the waiting…
Come back and let us know how you got on.
Big hugs,
Laura