Shocked at new diagnosis

Hi, I haven’t long joined the forum on other threads, having been diagnosed in July with 20mm IDC Hep+ ER+ PR+ with lymph node involvement - number not known, 1 large one 24 mm biopsied.

Have completed 4 rounds of EC and had my first (of 4) DHP this week over 2 days. There has been a good response so far to the chemo with tumour and lymph node now both around 9mm.

I needed a repeat CT scan before this second regime started, and have been told that I have a 10mm area now showing on the inner surface of my upper sacrum. This is bigger than the current size of my original tumours OMG. The doctor said there will be a meeting next week of all the team, clinical and medical oncologists, surgeon and radiologists; and that it is likely I will need high dose radiotherapy as treatment, in addition to current plans. I can’t believe I’m saying that my breast cancer has spread to my bones and I’m only 3 months in.

I keep swaying between “did I hear it right or did I imagine the conversation” to “they wouldn’t be having a meeting with all the Doctors to discuss something that’s not there, or tell me what treatment is planned”.

There is a query over whether, with hindsight, the area was showing on the original CT back in July which is something else they will be discussing with the benefit of the experienced radiologists; although that doesn’t change the outcome of course.

And then I have all the questions…how did it spread so quickly?, should I have had surgery first?, is it because I’m HEP2+ which being aggressive and targeted therapy only started this week, has this caused the spread?, was it there 3m ago?, what does the future now hold for me?

I think I needed to put this all down in black and white , to help me accept that my journey has taken an unexpected turn. I know the team are there to give me the best chance, and I have every faith in them.

Thank you for listening. X

Hi Butterfly,
So sorry to hear you are going through this.
As ever, there will be the ‘what if’ questions going through your mind, but whatever, you & your team will do the best for you & there’s loads of treatment options.
We’re always here if you need to offload.
Sending hugs
ann x

Hi Butterfly,

 

How awful for you - I really feel for you.  I had stage 2 cancer with lymph node involvement her2 + ER+ and PR+ breast cancer 10 years ago.  I had everything = surgery, chemo, rads, herceptin and hormone therapy.  Now I have DCIS on the right hand side and have had to go through staging scans for the original cancer - luckily for me they were clear. I know what the worry is like waiting for results and I am so sorry you are going through this.  Are they positive that it is the spread of your cancer?  It is so good that you have faith in your team - if it has spread to your bones I do know that they can keep it at bay for a long long time.  The fact that you are her2 does mean that the cancer can be more aggressive but it also means that you can have Herceptin (which I had) which is a brilliant treatment which has amazing success for lots of women.

 

Take care and thinking of you xxx