Just to add my experience matches everyone else's as well. I was diagnosed on 6/2 with Grade 2 told mixture of IDC and ILC and 3 lumps the largest 27mm. After mastectomy it was confirmed as ILC and 2 lumps 5cm and 2.5cm! As has been said they do not know until they operate. I obtained a copy of the first letter sent to my GP of diagnosis which gave initial findings. At no stage in the letter did it say the sizes were approximate which I think it should if they do not really know.
I have had to have every test going and still waiting to start chemo. I have had ultrasound, bone scan and CT scan. Last Thursday my op for lymph node clearance was cancelled at an hours notice because they had found something suspicious on liver. They ordered a CT scan for yesterday. Today I received the results and was told it was clear but now they have ordered MRI of bones as CT showed something on spine which they are not sure about. This is despite being told by BCN last Thursday that bone scan was clear.
I take everything with a pinch of salt. They seem (in my case anyway to change it as they go along) and order every test going.
I am new to this site also and found everyone extremely kind and helpful. It is a shock when we find out but sites like this (thankfully I came across it) help with all those questions. I found a lump, had a lumpectomy and sentinal node biopsy, 4 lymph nodes were removed under my arm but the cancer had also spread into my breast so I need a mastectomy now. Was told it was grade 3 invasive cancer. Started chemotherapy on 17 March, had 2 cycles, having the third on 29 April. It's all very scary when you are told and you don't know what to do or who to contact. I had no idea of how chemotherapy would be administered and felt a bit of an idiot because I didn't know and I was anxious and very tearful on my first day for chemo. The nurse asked if anyone had gone through anything with me and I said no, she sat with me and my husband and explained everything, took my bloods, then had the chemo prepared. It was administered via a canula in the vein in the arm (although she said that isn't ideal and I would need a port fitted), I had the first lot of chemo and surprisingly it was OK, I thought why did I get myself in such a state. I did feel sick after, felt exhausted, had mouth ulcers and my long hair fell out all in one go 2 weeks after chemo (I had prayed I would keep it), I was left with wispy hair and my eldest daughter shaved it off for me. Again surprisingly I felt ok, we did have a little cry but for me that was good I thought I would be hysterical. The second chemo was on 7 April and I had a port fitted under the skin on the breast with a tube running up to the vein in my neck. This is for future chemo to be administered plus blood tests etc. (Saves all those needles in veins all the time plus I was told the chemo could destroy the veins). This time I haven't had as many side effects (well hair has already gone so that's not an issue now), was a little sicky a few days after but not like the first lot of chemo and been a little tired on some days but again not like the first time so here's hoping it will get easier. I am staying positive but I do have my down days when I just cry. I have 2 wigs which I hated at first but now find them ok and everyone has said they don't look like wigs, just like my own hair and I have bought lots of hairbands to try and disguise the fake looking parting and to draw people's eye away from the hair but more towards the diamonte, flowery hair bands. I will have the mastectomy and reconsruction after I have finished all the chemo but trying to just take one step at a time and not thinking about that too much at the moment. Will deal with that nearer the time. I think in the beginning we try to take everything on board but it is best to just deal with each thing as it comes along. Hope this has helped a little. Can only give comments on my own experience but everyone on here has been great. Dawn xx
As waitingangel has suggested, Breast Cancer Care have published a booklet to help you to understand your pathology/lab report, you can read it via the following link:
thanks for all your comments, they have made me feel a little bit better.
i get my liver and bone scan tomorrow and if they are clear i've to back into surgery in 2 weeks to get the rest of my lymph glands removed. then chemo,radio and tamoxifen. i am really scared and am not coping very well. seem to be getting hot flushes, especially at night, and thats without any of the drugs.
i'm only 39.
at the start of all this when i got biopsy results was told it was grade one-slow growing and would not need chemo. got op to remove lump and was then told i was now grade 3- faster growing and 5 lymph nodes were removed 4 of them affected. that was a shock, breast care nurse is shocked at that result aswell.
When I had my initial FNA (fine needle aspiration) they told me my cells were C4. After mamogram guided core biopsy they were able to say waht grade the cells were. Maybe it's pathology talk that's confusing to you. There's a good leaflett on Interpreting your Pathology report on this siteand your BC nurse should also beable to help you interpret things. Give it a try.
I think that until they actually have that lump in hand and under a microscope it's often impossible to say, as others have pointed out in this thread. Also, if you are young (under 50) then things like FNA, ultrasound and mammogram are known to be quite unreliable as the density of the breast tissue keeps things hidden.
Was very interested to read your story - I was also initially diagnosed with a 1cm slow growing cancer that turned into a very agressive stage 3 3cm with surronding dcis and lots of vascular invasion and 12/29 lymph nodes affected. Thankfully too all scans clear. I was only diagnosed July 07 and hapf way through rads. It is good to hear that you are nearly 4 and a half years down the line.
Hi Vodka,When I had the biopsy I was told my tumour was 1cm and very slow growing and that I could possibly get away with no chemo..Alas, following my op 3wks later I was given the information that it was a very aggressive triple neg 2.4cm lump with a lot of vascular invasion and it had also spread to my lymph nodes! Was sent for liver ultrasound,chest x-ray and bone scan which were thankfully all clear.I can appreciate what you're going through now - having been there and come out the other end! After chemo and rads I'm nearly 4 and a half years down the line and feeling fine,
Until they removed lump and nodes they would not be able to give you the staging/grading - it is the path reports followed the op that give this information. I am surprised you were given the initial 'stage 1' diagnosis - I can only assume this was a best guess by the onc/surgeon treating you, based on what they thought the size of the lump was.
I was never given any into prior to my op (mastectomy) except that they thought the lump was 3cm and were reasonably sure that there was node involvement. Following op I was told I was grade 3, 5/11 nodes involved and her2+.
Following my initial biopsy/mammo/ultrasound - I was also sent for bone scan - mine was clear - hopefully yours will be too
Hi Vodka and welcome to the BCC forums.
I am posting to let you know that Breast Cancer Care have published a Resource Pack, it has been designed for anyone newly diagnosed with information to help you better understand your diagnosis, test results and various treatments, it is available via the following link or by contacting the helpline:
You may find our helpline useful to call to talk through the concerns that you have regarding your diagnosis, they can talk to you about our other support services too and also offer support, information and a 'listening ear'. The number to call is 0808 800 6000 Monday - Friday, 9am - 5pm, Saturday, 9am - 2pm. I hope you find this helpful.
Hi all, new to the site. Query about grades and stages, got biopsy done and was told i was stage 1. Went in for op, got lump removed and 5 nodes removed. Went back to get results from surgeon and was told im now stage 3. Is this common or was i misdiagonosed, has anyone else experienced this. Have now to get a bone scan in 2 days time, really scared.