Hi everyone
I’ve recently been diagnosed with “grade 1, oestrogen receptor positive, HER2 receptor negative, with normal axillary lymph nodes”.
This was a big enough shock from a standard annual mammogram - no symptoms - but is turning into a complete nightmare!!
Initial mammogram and consultation showed small lesion so plan was lumptectomy, followed by radiotherapy - not great but considered myself ‘lucky’ that it was caught early and was small.
I’ve since had an MRI scan as a ‘precaution’ which shows the original cancer to be 3x the size! and another small lesion ! So new ultrasound biopsy done to check if new lesion was also cancer?
Saw consultant yesterday and ultrasound biopsy did not successfully get new lesion so would normally have an MRI biopsy but have a bad hematoma from original one ! so MRI biopsy can’t happen until this has healed which is 6-8 weeks !
I’ve now been told I have a ‘choice’ ! As I have small breasts I am limited as to the amount I can have taken out in a lumpectomy, so i either have to wait for everything to heal to have MRI biopsy and chance that cancer could spread / increase in size in that time and if confirmed may need a Masectomy ! Or I ‘choose’ to have a Masectomy / reconstruction now !
Honestly this has spiralled out of control and not only am I terrified but how on earth do I make that call !
Has anyone else been in this situation - any and all thoughts / advice would be MASSIVELY appreciated.
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Hello. So sorry you’re in this position and it really is the most difficult time -‘once you have your treatment plan it does get easier.
My position started off like you’re being a single lump to be removed by lumpectomy followed by radiotherapy. However I asked the radiologist to go back over the scans since I had had a supposedly clear mammogram the year before, which resulted in calcifications being spotted in both breasts. These turned out to be DCIS of about 1cm they thought. So I needed mastectomy on the lump plus DCIS side and a choice of lumpectomy or mastectomy on the other.
I chose to go down the double mastectomy route simply because I thought it would be easier in the future for me, but everyone is different. After surgery the 1cm DCIS turned out to be 5cm in the side with the invasive lump and 6cm plus two tiny invasives in the other which hadn’t been seen on four mammograms, one stereotactic mammogram and two ultrasounds - so in my case I would have needed - mastectomy on that side too. I chose no recon, so recovery was quite quick.
I think it would be worth calling the breast canter nurses here who are able to talk through your individual situation… I’m no expert but I’m sure if you would like to wait for the scans, the cancer does not grow quick enough to change outcomes in the length of time.
You will feel better once you have a plan, even though it doesn’t seem like it now. Good luck with your treatment xx
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Hello! Yes my experience was very similar. Back in July last year I was diagnosed with oestrogen positive, HER negative invasive breast cancer on my right breast. At first I was told I needed a straightforward lumpectomy and RT, however after a MRI scan it was discovered the tumour was much bigger and I needed a mastectomy. It’s a lot to take it in such a short space of time.
The operation is major surgery but you will be suprised how quick your body can recover from it. Do the physio excercises, plenty of self love, rest and good food helps massively.
I’m now 7months on from my operation and back to work ‘living a normal life’. I know life will never be normal after a cancer diagnosis but it’s nice to get a sense of normality after the trauma of last year.
Wishing you all the best xx
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Hi @kelly1
Sorry you have to be here, but welcome!
I had a similar experience. Lumpectomy was scheduled and then I went for MRI which showed up another small speck which was tested. The surgeon’s plan was to take this out too which, although not a mastectomy, would have meant a significant amount of tissue removed. I agreed to this as wanted to get something done. MDT were not happy with this and I was meant to go for a MRI biopsy but, after lots of backwards and forwards, my results/scans were instead reviewed by an expert who confirmed they were satisfied with the biopsy results and so I ended up just having the main lump, and therefore much less tissue, removed.
Like you I was worried about growth/spread while all of this was happening but was told a few weeks (7 in my case) would not affect my outcomes. Nobody can make the decision apart from you, but with the benefit of hindsight I’m pleased I had to wait while all of the above was done as it meant the best outcome for me and I am happy with my results and was quickly back to a completely normal life. My hasty agreement to the surgeon’s original plan would have left me physically very different, and I imagine psychologically much more affected, so am glad all of the tests were done and the right decision made. Please try and trust that your team would not allow you to wait for the test if it put you at further risk.
Best of luck with everything. x
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