Hello all,
im feeling so stressed right now. My tnbc was diagnosed 26th November. Lumpy biopsy was clear but they wanted another. Surgery had been booked for 11th dec but 2nd biopsy had not been returned so it was cancelled. 2nd biopsy came back showing microscopic cancer cells in lymph and now I have a meeting with oncology on 24th dec.
i feel really co fused by the decision making process. Why take in initial biopsy result in to consideration of the care plan if they don’t trust the results? I feel that they should have gone straight to chemo as that seems to be the standard for tnbc.
I am trying to arrange a 2nd opinion privately. I can’t afford private care but can afford that one off consultation. However comms with my care team is terrible. I only have the very first appointment letter where I had my scans and initial biopsy. No clinic letters with any follow up. The private health company said that the consultant secretary should be able to share clinic letters and histology with them but she is saying I have to request this via medical health records management.
I have no direct contact with my consultant (surgeon), breast cancer nurses are just an answer phone and they call you back at a later date.
im feeling totally cut out any decision making with this. We are now nearly a month post diagnosis with no treatment.
has anyone else experienced this? Is this lack of communication normal? Are these time scales normal? Has anyone else sought a 2nd opinion and had these issues with obtaining relevant records?
im so stressed!
Hi Eliza
I was diagnosed with TNBC in April 2022 and had a lumpectomy first followed by adjuvant chemotherapy and radiotherapy.
You've asked various questions so I'll go through them and share my experiences with you.
Having chemotherapy before surgery isn't the standard for TNBC but depends on other things. If chemotherapy is given first it's usually to shrink the tumour to a smaller size so that less of the breast has to be removed. My tumour was small so the surgeon was confident that she could get it all out with good margins without the need for chemotherapy first.
I ended up having chemotherapy purely because one of the sentinel lymph nodes they removed at the same time as my lumpectomy, contained a small deposit of cancer cells.
Why take in initial biopsy result in to consideration of the care plan if they don’t trust the results?
Only your hospital team will be able to tell you why they needed a second biopsy. It might have been because the first one wasn't a large enough sample.
I only have the very first appointment letter where I had my scans and initial biopsy. No clinic letters with any follow up.
After I had my biopsies, along with an ultrasound and mammogram, I had an appointment with the breast surgeon who told me what my treatment plan was. I didn't get any paperwork except for the consent forms for the surgery. I was copied in to the letter sent to my GP after surgery telling him the size of the tumour and what surgery had been done. I've been copied in with every letter since, which I understand is standard practice.
If I want to speak to one of the breast cancer nurses, which I've done on several occasions, I leave a message on their answerphone and they get back to me within 24 hours. At the time of being introduced to one of them it was explained to me that for the majority of the day they are with patients so usually call back towards the end of the day or at the beginning of the following day. To date, they have always called back within that timeframe.
I don't think it's usual to have direct contact with your consultant, normally the BCNs liaise on your behalf, but if you want to speak to them then you could phone their secretary who can then arrange an appointment for you either over the phone or in person.
I didn't ask for a second opinion so can't help with that but this information from Macmillan tells you how to go about it and the pros and cons of doing so.
As for timescales, I had my first treatment, surgery, almost exactly a month after my biopsies.
I hope the above has helped somewhat but if you want to ask me anything please do so.
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
