I am due to see the onc tomorrow before my 2nd chemo, scheduled to have 6 FEC. I was dx in Aug with invasive lobular tumour 6cm. CT and Bone scans indicate no spread as far as they can tell. Plan is chemo to shrink tumour followed by surgery the possibly RADS.
I have tried asking about the grade of the cancer and its hormone status but have been told that they can’t really tell this until after the surgery.
After doing some research it appears that they can tell these things and that they are useful for predicting outcomes. Also i have read that lobular doesn’t react as well to neoadjuvant chemo as ductal and it is more likely to be in both breasts. My cancer didn’t show up on the mamo ultrasound or fine needle so i am worried about my other breast. They also have only been able to manually gauge the size of it but i have read that it should show up on a MRI.
Am i being a worry puss or are these questions that they should be answering for me. Up to this point i have just taken what they have said, i don’t want to be difficult but i am now at a stage where i would like to know what my prognosis is.
Sorry this is a bit rambling, reading all the notes i have made has resulted in me being even more confused.
Any advice on how far to push things with your onc would be gratefully received
I was diagnosed with invasive lobular cancer last October after a core biopsy. At this stage, before surgery, they were able to tell me that it was strongly ER and PR positive and the grade. They also wanted me to have an MRI scan to check for any other lumps either in the same breast or other breast and so I had that before going ahead with surgery. I didn’t get a full prognosis though until after surgery and lymph node removal.
I had invasive lobular in left breast diagnosed in July. I was sent for MRI scan to determine if only one or Both breasts involved. Scan showed size of tomour and confirmed no further involvement. Mine was smaller than yours so was removed prior to chemo and rads. Not sure from your post if you have had MRI or not? Maybe you could ask about it. On the other hand I was not offered bone scan so guess every patient is different according to what they can and can’t see.
Not sure if this helps or not.
This web site is very helpful and as you read through the posts you will become much more ‘informed’ I certainly have and find reading peoples experiences very supportive.
Good luck
Jewjew
I have the same plan: chemo - surgery - and then maybe rads. I have been told that they can’t tell my prognosis until after the surgery too but they do know the hormone status. I don’t know if they know that from the core biopsy or blood tests but it’s one or the other!
I do think you should push for an MRI. I’m pretty sure I had one because of my age - nothing really showed up on my mammograms either and after the scan they sent me back for more core biopsies in the other breast (clear I’m pleased to say). I know they are expensive though which is perhaps why some hospitals don’t offer them as readily. Sorry if that sounds cynical, I’ve been lucky and feel very well looked after by the NHS but it does seem to vary quite a lot around the country…
Anyway, am also rambling now! I would ask about the hormone status again and the MRI and also question their decision about the neoadjuvant chemo with your type of cancer. Take someone with you if you can - it might help you feel braver about demanding answers!
Good luck for tomorrow. I hope all goes well for you.
I had similar diagnosis and treatment to you - 8 cm main tumour, estimated by palpation by onc. Also lobular. Had a remarkable response to 6xFEC, shrunk to 2.2 cm. Mastectomy as also had other smaller foci.
From the core biopsy they told me ER+, but there was insufficient sample for HER2. Was told I`d get the grade after surgery - still missing but being chased up.
Wasnt told any prognosis on diagnosis - but told it would be based on what came out at surgery, not on the what they estimate.
It was really hard not knowing a stage and I speculated beyond belief - but to know the FEC was working was a relief.
Have asince sked for a prognosis but was told stats are meaningless.
Had MRI to see if left breast clear. At 38 and with dense tissue mamograms not much use.