Feeling pretty low at the minute! and confused, angry etc etc
I was diagnosed end of Feb with a 5.5cm tumor in my breast. invasive lobular.
I was operated on 11th March. Lumpectomy and lymph nodes removed.
All scans had shown my nodes were clear and that there was one lump.
I got my results Thursday 26th. I knew something was wrong as given the current climate I was asked to go in and discuss the results with my surgeon. very strange experience, very different from my original diagnosis where everyone fussed around me and provided me with booklets and info etc.
I was told that a second area of tissue in the breast was removed and was tested positive. Therefore as the margins were not clear I would need a mastectomy on my booked surgery which was April 6th.
I was then told the 3 lymph nodes removed all had cancer. This devastated me as MRI etc showed they were all clear. I would therfore have all my lymph nodes removed during the mastectomy on the 7th April.
I questioned the date and was told the virus is causing us to make changes. I got the distinct impression my operation will not happen.
I was told that they were looking at chemo possibly tablets. Originally I was to have radio therapy and hormone therapy. when I asked about the change the surgeon looked very uncomfortable and said we have to have plans.
I was then escorted to the door, told my breast care nurse would call me the next day and not to worry.
I feel so lost and isolated. My nurse did not ring. this did not surprise me as I had been in the breast unit, it was empty, normally bursting at the seams! and this virus!
I just do not know what to expect. I was told that if the cancer spread to my lymph nodes treatments meant I had a good chance of 5 years. is this true? is the operation my best chance?
Hi there, so sorry you had to find yourself here but it really is one of the best places for help and advice.
you could ring the nurses on the help line they really do help and have helped me in the past, honestly.
i had a similar experience to you I don’t think it’s uncommon. I went from my lymph nodes being clear on the ultrasound to 3 of the 4 removed having cancer when I had a therapeutic mastectomy and snlb,
Mine was micropapillary hormone positive and her 2 neg, so I did have chemo but on the nhs predict it chemo gave me an extra 6%. If I’m honest I wouldn’t do chemo again but that’s just my opinion.
I didn’t have a lymph node clearance as radiotherapy is just as effective, The rads were fine but given months after surgery as a kind of mop up, I didn’t have any other scans of any kind whatsoever other than the ultrasound at diagnosis and a planning ct scan for rads, it wasnt thought necessary.
it really was the removal of the lump which provided the most, everything else just added a bit on. They may give you hormone tablets in the meantime.
did you get a breast cancer nurse? If so I’d ring her, I find it doesn’t work to be a patient patient, they’ll assume your ok if you keep quiet. I didn’t have one but I really wish I had, I finished chemo and rads just before Xmas and whilst physically Im fine, mentally not so good!
please message me if you ever want d
Hi JacT, So sorry you have all this to deal with, especially with the virus to add to everything. Just adding a bit from my experience in case it helps. I had left mastectomy in 2014 and during the operation they thought the sentinel nodes were clear, but afterwards found isolated tumour cells in them - these are tiny cells so small they are regarded as safe to ignore and no other treatment was thought necessary. Three years later I had a lump removed from he right side, nodes clear, followed by rads. Then last year I found a spread to my lymph nodes back on the left side. Surgery was seen as the main treatment, they had me in quickly and did a full clearance - three nodes had cancer. I followed up with chemo just in case it had spread any further and got through that by last August. Since then I’ve had a CT scan which showed clear and have every hope to stay that way. I’m not sure exactly what you were told about “having 5 years”, but when they talk about 5 year survival rates it usually means “how many are still alive 5 years later”, not that we only have 5 years to live. You are in a horrible place at the moment with all the shock and worry so new, but you can get through it, lots of us have and intend to be here for a very long time! Very best wishes to you. Love Mo xx
It’s a horrid situation, I know, but made all the worse by the uncertainty of the current crisis. I went to my doctor with two tiny raised freckles on my areola. My doctor was interested but didn’t think there was anything to worry about but she found a largish lump between my ribs under a breast scar from surgery 30 years ago, decided it might be scar tissue but she’d refer me just in case. My consultant was similarly intrigued but assured me there was nothing to worry about but he did biopsies on the freckles. I went back quite happily to be told I had cancer, despite a clear mammogram 7 months before. More biopsies and the news got worse - 2 tumours. So I went from nothing of concern to a full mastectomy and full axillary clearance with 19 of the 21 nodes infected, all within 4 weeks. BUT a CT scan showed no evidence of spread beyond those nodes. Those lymph nodes sound scary but they’re doing their job!
So, surgery, chemotherapy (horrible but doable), radiotherapy (easy) and hormone therapy plus a few additional treatments to protect my bones. It was only once I found this site that I discovered some people have chemo first and then have surgery once their tumour has reduced in size. I don’t know why but every programme is tailored to each specific cancer. At a time like this, the oncology teams have to balance the risk of infection against the benefits of surgery/chemo. You have to trust them to make the right call on your behalf. Some people do in-depth research and make decisions for themselves - I wanted to know as little as possible and still cant reel off the details of my tumours - but this virus really makes it impossible for you to make a similarly informed decision. Just don’t google anything. Please. It’s dangerous. Ask the nurses here. Ring the number above. Ask your breastcare nurse.
One point I can’t stress enough - all this talk of percentages is more for their benefit than ours and is pretty meaningless. At the time of surgery, my prognosis was “poor,” (This is why I say never google - I was a wreck and I didn’t look it up until I was heading back to full health) less than 50% over the next 5 years. What I didn’t understand was that each treatment, including surgery, increased that percentage so now I’m in the 70s. However, that doesn’t mean much. I might spend my life worrying I’m in the 26% and find I never get a recurrence. What a waste of a life. No one knows what our chances are in life (that bus??). I just look at my scar and see it as a badge of survival and I’m grateful. I have days when I get a fleeting fear about it but mostly I just don’t think about it at all. I’m here, thank heavens.
This is a terrible time for you. It would be full of uncertainties anyway but, with breast cancer, you get into routines. You’re deprived even of that comfort. I wish you well, whatever decisions are made - they’ll be the right ones in the new circumstances.
Take care, stay safe and don’t google!