Dear All, I had a mastectomy and lymph node clearance on 20th December and went back for my results yesterday. I have been told the tumour is 13 cm’s so bigger than they first thought and 9 of the lymph nodes are affected (this too shocked me). They mentioned a small shadow on my lung which they will review again in three months as hopefully only inflammation I have been told I will need chemo, radiotherapy, and medication, I cant remember much more after I was told this. My head is all over the place as I naively thought I would not be needing so much treatment. I am due to get an appointment with the oncologist within two weeks. Any words of encouragement or feedback from those that have gone through similar would be so much appreciated. Sending love and healing hugs to you all xxx
Hi Sparkleandshine, I had a slightly different route to you doing chemo first then surgery and radiotherapy. I had a large tumour and lymph node involvement but I knew all this prior to chemo.
Everyone is different but for me chemo was the hardest bit, saying that, it wasn’t as bad as I thought it would be and you will be given so much advice and medication to help with side effects.
It’s definitely worth taking someone with you to appointments if you can or asking to record the appointment on your phone if you can’t because there is a lot of information given to you.
Other tips I’d say is join the monthly chemo thread on this forum for support, hydrate, stock your freezer with healthy quick meals, hydrate, ask for help, hydrate, rest when you can and hydrate!
Good luck x
Thank you so much for your reply, it means a lot xxx
I am so sorry you had this experience yesterday.
I remember only too clearly being completely blindsided by news I wasn’t expecting - it was devastating. I don’t know why I had got it in my mind that I was just getting confirmation results and hadn’t considered the picture may have changed with fuller examination. It sounds like you experienced this as well.
I was expecting two tumours with the largest at 3.5cm with no lymph node involvement (stage 2) Instead I was told three tumours with largest at 5.5cm, 1 lymph node involved + vascular invasion which meant further surgery to clear rest of axillary nodes and chemotherapy (stage 3 and higher risk of recurrence). The axillary clearance found another positive node so 2 in total.
Anyway, I completed the additional surgery, 5 rounds of chemotherapy, 3 weeks of radiotherapy and just coming to the end of my 2 years targeted abemaciclib treatment. I was also offered 3 years of bisphosphanates (IV every 6 months) and up to 10 years of anastrazole (of which 2 years of each has been completed). You may be offered the additional targeted medicines as well but don’t worry about this too much now - it’s already overwhelming enough. Maybe try to split things down into smaller chunks - what do I need to do today and what can wait until tomorrow? I found it easier to manage that way, and felt more able to achieve/control things.
A pen and paper to write things down that I wanted to come back to was also useful. ‘I don’t need to think about that right now but I’ve written it down and will come back to it’
I am still worried about higher risk recurrence, although not really sure what that means and I don’t think about it every day like I did.
Chemotherapy wasn’t great but I got through it and it was only 4 months of my life overall.
Time does lessen the blow but it was really hard to start with, and I had a horrible heaviness/sickness in my stomach all the time. Hold on in there…
Have you got a Maggie’s or local cancer wellbeing centre attached to you? It could be worth going in and speaking to someone, or maybe calling your breast nurse or breast cancer now helpline? Having support now to talk it through, cry with, scream with could help until those strong feelings reduce.
It’s still raw and you’re still reeling. It’s not going to always feel like this so hang on in there and use all the support there is until that rollercoaster slows down.
Big hugs.
Laura
Dear Laura, thank you so much for your reply, it means a lot xxx