Hi Ladies,
I need a little help, had lumpectomy a fortnight ago, had appointment today for my results they say i had an Invasive Ductal
tumour that was 13mm with no vessel or node involvement was to scared to ask what this really meant, have been looking about site but cant seem to find this type, has anyone else had this type of tumour?? also keep reading about her2 and estrogen positive and negative how do i work this out ??
Thanks
Hi Lynn,
I am by no means an expert on the subject. Have you been given an appointment with an oncologist? I got my full details from my Onc. If your hospital is like mine, I had to ask rather than the info being automatically given to me.
Hopefully someone else may come along to help soon to help.
Axx
Hi Lynn - sorry to hear you are on this journey but you are in good company!! I had similar to yours - did you not get given any info or booklets or maybe you haven’t had further meetings yet? Anyway you will find loads of info on this forum and I’m sure someone will send you links to the pamphlets!
The jargon is all quite techo in the beginning but you’ll soon get used to it - any questions you have, there is always someone here to help you.
Warm hug!
X
Ok no expert but an invasve ductal is very common its what i’ve got and there is info on the main BCC site and also from the helpline…and no node involvement means it has not moved into your lymph glands under your arm which is good…(mine has)
they should tell you if you are hormone positive and there is info on that on the main site too!
loads of lovely ladies will be along to give you further info, advice and reassurance …
you will get your head around it in no time!
Best wishes
Mary M
Hi Lynn,
Invasive Ductal Carcinoma (IDC) is probably the most common kind of breast cancer, and is the name given to cancer that began in the ducts of the breast (sometimes called DCIS) and then spread into the breast itself. A 13mm tumour is fairly small, and having no node or vessel involvement is great news, as it means there is no evidence of further spread. If they gave you a pathology report I would expect it would tell you abour HER2 and oestrogen status.
Do you have any further appointments? If so you can ask these questions then, or if there’s a breast nurse you could phone her.
Try not to worry too much, and don’t be afraid to contact your hospital to ask questions - they’ll be used to it!
Take care.
Hi Annie
I have an appointment with my oncologist on Thursday to discuss when my chemo starts, it was my surgeon who i had an appointment with today who told me the info but i was so scared i didnt really listen properly i asked him to write it down for me and that is what he has written.
thanks lynnx
hi there,
ductal is the most common i believe. her2 and oestrogen positive is the receptor status of the lump they removed. so if it oestrogen positive it responds to oestrogen so you may be offered hormone therapy treatment. you should ask your onc if it is positive for any of these receptors. they test for these things as standard. i am sure he/she will go through this side of things in detail with you.
lots of hugs TTM xxx
Hi Lynn
Here’s the link to the document which explains your dx (diagnosis)
Try not to worry and don’t hesitate to come back and ask more questions or you can always ring the Helpline or your BCN (breast care nurse).
Best wishes
L4W
Thank you very much ladies,i have now found the link Dcsi didnt know that was the same thing,i have another appointment on Thursday so will ask then, think it be better if i write down the questions i need answers to and take it in with me ,then i can write the answers down.
theres a brilliant leaflet (which you can download) on the mainsite called something like
understanding your pathology report
which you should read as it will help you sort out your questions - sorry no good with posting links but it is there !
Yes, sounds just like my diagnosis.
Had IDC (what you’ve got) with no nodes and no vascular involvement, 13mm.
You might want to ask about receptors, as if you have oestrogen or progestorone receptors you can get Tamoxifen (if pre-menopausal) or an aromatase inhibitor (another kind of drug) (if post-menopausal) to further help keep it at bay.
Only 25% or so of tumours are HER2+, and if you are you can take Herceptin, which you might have heard of.
Things you might want to ask about are:
What GRADE is it? Grade talks about how different the cells are from normal cells, and how aggressive it is. Grade 1 is where the cells are the least different from normal cells, 3 is where they are most different. Grade 3 is often called “most agressive” but that sounds like it has teeth and claws. It’s just a term, don’t get in a state about the words, they have to use something.
What STAGE is it? Stage talks about how far it’s spread. By the sound of it, because it’s restricted to just the tumour in the breast and it’s a small tumour, sounds like it’s Stage 1. They might not even talk about stage at your hospital because of how small it is and that it’s completely restricted to just the breast and not even the nodes.
What is the hormone status? This refers to whether the tumour over-expresses receptors for normal female hormones, oestrogen (also referred to as ER+ because of how the Americans spell it) and progesterone (PR+). This is given in points out of 8. Mine was 8/8 for oestrogen and 6/8 for progesterone. That means you can take further drugs to keep it at bay, depending on whether you are pre or post menopausal.
What is the HER2 status? If you are HER2+, you can take Herceptin, that’s another drug to fight it, but it’s only any use if you have that receptor.
If you are ER- and PR- AND also HER2-, that’s referred to as triple negative.
Anyway, don’t want to bombard you with stuff. There are some very helpful leaflets you can read on the Publications section of this site.
And keep coming back on here for as long as you find it helpful. As I said, I had the same size and type (IDC) as you. I was HER2+, ER+ and PR+, Grade 3, and ended up with chemo, radiotherapy and Herceptin (still on it). I was diagnosed Dec 2010. I went through the yuckiness that is chemo, did rads, still doing Herceptin, lost my hair and grew it again, and I’m still here to tell the tale.
Give the helpline a ring tomorrow morning (9 - 2) and have a chat. They’re fab, and will have lots of info and support for you.
Don’t google, there’s lots of rubbish out there. stick to this site (be choosy on the threads you dip into), Macmillan, and these forums.
We’ve all been where you are. The first part of this horrible stuff is just the pits, so we all know what you’re going through.
Have a hug, think you probably could do with it.
CM
x
Forgot to say:
THERE IS NO SUCH THING AS A SILLY QUESTION.
None of us knew anything about this when we were where you are, and only found out by asking. So ask anything you like, nobody will laugh at you.
(We even had someone ask about whether fake nails were ok for surgery, and nobody though that was a silly question, in fact it resulted in a very interesting thread.)
Lynn,
Don’t worry that you feel overwhelmed I know I did!
You know that you have IDC and it’s 13mm- the next questions would be whether it is HER2+, ER+ or PR+, what grade it is etc. I found it was best to take a notepad with me with all my questions written down - don’t worry there is no such thing as a silly question - that’s the BCC motto!
Let us know how you get on
Axx
Thanks everyone who took the time to respond ,it helped a lot xx
Hi Ladies
sorry it me again phoned my breast cancer nurse today she said i am stage 1 grade 3 pr is 0 and er is 4 she didnt have my her2 ??
can anyone explain what this means ? am i triple negaative?
Thanks
Hi Lynn,
Some quick answers…
Stage 1 is mostly a description of the size… small lumps <2cm
Grade 3 is a description of the cell types, grade 3 is the most unlike normal cells.
I can’t give you a definitive answer but I do know that sometimes HER2 testing takes longer than ER/PR, so those results might not be in yet. They usually score ER and PR out of eight where 8 = most receptive and 0 = not receptive at all. So a score of 4 for ER would be at least ‘moderately receptive’ I think, but as I say, I’m not qualified to make that call… If you phone the help line I’m sure they will be able to answer your questions. There is also a leaflet called ‘understanding your pathology report’ which is helpful. www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/understanding-your-pathology-report-bcc161
Hopefully once you get to see an oncologist they will explain properly what the plan is - and have your HER2 reuslts as well.
Hope all goes well for you in the days ahead. Take care.
Hi Lynn
You may find the BCC publication ‘Understanding your pathology report’ useful, you can read or order a copy here:
Best wishes
Lucy
Hi Lynn,
I was diagnosed aged 36 in March 2010, and my diagnosis was pretty much the same as yours. My tumour was grade 3, so aggressive, but also thought to be stage 1 as there was no evidence it had spread to the lymph nodes, it was under 2 cm and there was no vascular invasion. My hormone status came back at biopsy and was confirmed after the post operative pathology. It was PR-0 and ER -4. My her status took a few weeks longer to arrive but that too was negative. My surgeon described my ER status as “vaguely positive”. I had a lumpectomy, chemotherapy and radiotherapy and have done 17 months out of a five year course of tamoxifen. My oncologist said they cannot accurately calculate the likely benefit of tamoxifen but it was likely to have some benefit so was worth trying, but he also said that if the side effects were too harsh then he would be happy to take me off it. He prescribed me 3fec and 3 taxotere for my chemo. He did this partly on the basis that my cancer may behave more like a triple negative.
I feel ok now and that all feels like a very long time ago. Hope that helps you, all the best with your treatment
Vickie