3 days since I am diagnosed invasive grade 2, I am terrified...

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Hi there new people - like everyone else i’m sorry you have to be here but while it is all horrible at the moment because it is so new, you do get used to the idea… and it does feel better when things start happening.

I am ten months down the line after being diagnosed with a fast growing invasive lobular cancer just to the left of the nipple - mine was grade 2 - it wasn’t huge but one lymph node was involved so i had a mastectomy, i was on an accelerated chemo trail so i had FEC followed by xeloda - they decide on the appropriate chemo post op because then they get a proper look at the composition of the tumour… I finished rads a month ago and still have an itchy chest!!

I was fortunate not to have too many side effects on chemo and i soon got used tot he boiled egg head and gave up on scarves and wig… too hot and itchy… my hair has come back thicker and it looks like it may be curly…

My hospital tip is take ear plugs - other people snore!!! Plus pyjams are easier if you do have drains.

I hope all goes well for you.

there are some lovely people on this site and one thing i hadn’t bargained on is getting to make new friends! i am meeting up with some of them on friday for coffee and then on sunday meeting for lunch with some more!! I have found a lot of humour in the whole journey but I know not everyone does. Just take each day as it comes - it is normal to have mood swings andyep - i have cried while laughing!!

Take care

jen xx

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I was called to the hospital urgently today. Originally I was told ca left breast, nodes and ?? right breast. Had bone scan, MRI and CT which I was told on Friday were OK - they only revealed what they already know. Plan was WLE and axillary node removal with chemo to follow. Apparently MRI has shown right breast to be ok after all but that the biopsy they had taken of a lump under my arm which they thought was a node is another cancer. ( I don’t know if I am explaining any of this right so please bear with me). All in all there are 3 cancer sites in my left breast. Plan now is mastectomy, WLE won’t clear, with SN biopsy. Only when results back from the biopsy will I know if I need node clearance and chemotherapy. Should I know be doing anything else. Grateful for some feedbac please. Thanks Diane

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Hi everybody, Tania in particular.
I was diagnosed with an 8cm Grade 2, Invasive Lobular Carcinoma on Aug 27th. I’ve had more tests to determine full extent, and will be seeing the consultant on 8th Oct for results and ‘plan of action’ - first indications are that mastectomy is most sensible option, because it is ‘Classic’ ILC - so Oestrogen/Progesterone +ve/HEP2 -ve therefore hormone/chemotherapy will have little/slow effect in shrinking the tumour. I agree with this, I’ve known since I found the lumps (both breasts, but only left has ‘taken off’) that I want cut out.
As an acupuncturist I have some knowledge of cancer and have treated several women through treatment and out the other side. Sorry to say, this it little comfort when the problem is with yourself! I’m scared!
My Breast Care Nurse sent me the booklet that is published by this website - it’s called ‘Treating Breast Cancer’ … it is marvellous … my advice is to ****GET HOLD OF A COPY NOW****. It covers EVERY aspect, tells you where to get more information, lists the questions that you need to ask so that you are fully informed…
On the subject of questions … if you want to know anything … please start a list … and don’t be frightened to call the nurse and talk to her. Don’t be frightened to ask the surgeon. Please don’t think that your questions are small, irrelevant, insignificant, THEY AREN’T!!! They are what YOU need to know. We are all paying, through PHI or through NI contributions for these people to help us - and they are trained to help us - please use them, they are there to help put us at ease.

Good luck to you all
Love and luck to everyone
Jan (petrified, as we all are!)
x

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Can I ask you please how you all have so much detail on type, grade etc., in relation to your condition. Whilst I have had core biopsies, mastectomy and LNB planned for Monday 8th, I am told the info on type, grade etc., won’t be available until after surgery. Do they know and because it is so bad not telling me or am I different for some reason? I am really worried given that you all seem to know so much more than me and I have specifically asked the question. Help please - Di

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Hi Dianedawhar

I was told by my consultant that mine was hormone +tive grade II 15mm from the result of the biopsy. I have also heard on this site that this diagnosis might change when I go and get my next results from the WLE on 11 Sept. I was also told by the surgeon after the op that I had two nodes removed and everything ‘looked’ ok. This can also change by the time you get your results from the WLE.

So, it could be a smaller or bigger tumour, but I think the hormone +tibe bit was correct as they have said I will need rads, poss chemo and then tamoxifen, the only info that might change is the size of the thing and nodes being clear with clear margins, which I am hoping for. So I think until you have had the WLE or masectomy you will not know the true size or grade.

Hope this helps. Good luck for Monday 8th with the LNB. I had my WLE 2 Sept and although a bit sore, I am managing ok with things and have stopped the pain killers already!

Much love
Netty xxxxxxxxxxxxxxxxxxxxxxxx

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thanks Netty - I don’t feel at all brave. I had accepted WLE as well as one could - whilst I am told the news is good that what they thought is lymh node involvement is tumour and therefore more radical surgery (mastectomy) is required I just haven’t quite accepted it somehow. Although I work in healthcare - have done for years - I seem such a novice compared with others on all the detail and when I ask I am told they don’t know yet. That is why I was concerned that they did know but just didn’t want to tell me. thanks for your good wiehs. When do you get your results from your WLE? Di

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Dear Diane

you could do with the breast cancer care resource file if you haven’t already got one. It’s pretty ghastly being diagnosed and being told different things all the time. I must say I was highly confused by it all, and even now things are developing so you feel you can never keep up at least I do - and I was diagnosed almost five years ago. One problem is everyone has their own treatment plan based on the size, grade and kind of cancer you have so no two women get the same. NICE guidance on Improving outcomes for breast cancer update 2002 is pretty good on what standards you can expect, but it is very loong

Mole

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Di,

Don’t worry about not feeling brave,I didn’t!
I was like you ,originally scheduled for a WLE which I had got my head around.However after an MRI scan my 2 lumps had turned into 3 so a mastectomy was advised.I only had a week to get my head around that and to be honest it wasn’t long enough but then I am not sure what would be long enough!
I work in healthcare too but you are a patient now and its very different isn’t it? You will soon pick up the terminology.(unfortunately)
Was it a core biopsy you had or a Fine needle one? Core biopsy usually gives a size and grade of tumour bit FNA is a bit vaguer.Although as you know these results can differ post op.
My main tip for hospital is front opening pjs as the nurses will check your wound regularly,it makes it easier for you.
I will be thinking about you on Monday,just think you will soon be 6 weeks post op like me!
Hugs
Dot
xxx

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Hi Diane,

I was dx 5 yrs ago, and knew absolutely zilch about breast cancer. When I had a recall from a regular 3 yrly mammo I truly thought they had either got my film mixed up with someone else’s or the film was dirty. I couldn’t feel a lump and neither could my GP. Turned out it was “non palpable” and deep in the breast. At the recall, I had the 3 step procedure, compression mammo, ultrasound and core biopsy, and when my husband and I were taken into a private office to meet the breast cancer nurse, we were given tea in china cups! I knew I was in deep trouble then. All they told me at that time was that I had a “malignant tumour”, didn’t mention the word cancer, and they already had a date for surgery. I was given the option of a Wide Local Excision and radiotherapy, or a mastectomy and no rads. Seemed as if they needed an answer straight away, so my husband said go for the WLE, you can always go back later if necessary for a mastectomy. They then told me I would have “lymph node sampling” - duh? I didn’t even know I had lymph nodes in my armpit! The bc nurse showed me a diagram of the lymph nodes, and that really was all I knew until after the WLE when I saw the surgeon in clinic.

He told me 2 of the 8 lymph nodes sampled were malignant, and I went back in a month for total axillary resection. Another node malignant - so he was doing his job correctly. Chemo was then strongly advised - quite a shock. By this time, I had found this site and someone mentioned getting copies of the two pathology reports, done after each surgery. Might as well have been in Japanese for all I understood it. The surgeon’s eyebrows went up when I asked for these, he didn’t say a word, just left the room and got me copies. Unfortunately, he didn’t go through it with me, but with the help of Google and ladies here, I finally understood it. This is probably the most important piece of information you can have, as it details the type of tumour, stage, grade, size, and hormonal status (ER,PR and HER2). Mine also detailed my Nottingham Prognositic Indicator - 4.4 The path reports dictate what further treatment, if any, is necessary, and is used by the Oncologist, if involved, to decide on which kind of chemo is required, and the number of radiotherapy sessions.

I am not sure if this is how most, or all, hospitals proceed, as I don’t know anyone personally at other hospitals - mine is Derriford in Plymouth.

I don’t think your hospital is keeping anything from you, they need the path reports after surgery to be able to tell you the full details. You are entitled to a copy of these - I didn’t have to pay, but I believe some hospitals do charge a small fee.

Hope all goes well on the 8th.

Yesterday is history,
tomorrow a mystery,
today is a gift…
my new mantra!

Take care,
Liz.

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Liz you are a marvel - thank you for an insight into how confusing and changeable diagnosis can be - knowing that makes me less scared, believe it or not. It shows me how I must keep my mind open and stop trying to tie everything down and secure in neat little ‘boxes’. Go with the flow, as my friend says. Your information sounds as if it is all history/up to 2 years in the past … how are you doing now/today?

You all use initials … WLE, FNA, LNB … I’ve started a list so I can keep up until the terms become familiar!

Jen - I surfed the internet this morning looking at pictures of bald women, in readiness for the ‘boiled egg’ look in the near future after my mastectomy is over. My son took some photos of me this morning, he’s going to air brush out my hair so I can get an idea of what I will look like. Hair loss for me is so sad - its is a small price to pay for my life I know, and I feel guilty being so vain. I’ve already decided that I shall have my head shaved at the start of chemo - it breaks my heart to see my patients getting up from the couch and leaving so much of themselves behind - I don’t believe I can watch that happen to me. I am told there are lots of good wig makers out there … have a feeling I will be like you and sensitive to the itchy sweaty aspect. Do others of you have experiences to share about wigs?

I am enjoying reading all of your different experiences… its comforting. Although at the same time am horrified that so many of us are going through these experiences… mind blowing

Big hugs for Monday, Di.

Monday is the day I get to know full extent/spread of my cancer, lymph involvement, and date for mastectomy. I wonder if I shall find some new initials to add to my reference list!!!

Jan
x

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Dear all
many thanks for your supportive comments. I had a core biopsy so would have thought they would have known the detail. I am worried they know but just don’t want to tell me! Like you MRI showed what they thought was lymph node involvement to be tumour - 3 in total. I am dreading Monday. Have just opened my post. I ordered one of the compression vests, one of the other threads said they were good post op. Not what I would have usually purchased! Like Jan - I am upset about my hair if I have to have chemo. It is my only good point!
I spoke to my GP Practice yesterday - the senior partner - to say how disappointed I was that I first presented with axilla pain over 2 years ago and wasn’t referred. He said I had been very unlucky - I said I thought it was more about incompetence! Good luck to Jan - hope Monday brings good news. Di

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Jan, I’m going to be starting chemo soon so my hairdresser came this weekend and did a very short haircut and when it starts to go, which I think it does very quickly, I have to send her a hairdresser SOS and she’s going to rush round and do a shave for me. I wasn’t going to bother with a wig but then a friend pointed me to Suzi’s wigs at Lakeside in Essex - anywhere near you? - and they have a special chemo service. I ended up being very impressed by them and have bought one. I may not wear it a huge amount - I like the idea of scarves - but I think for work it will be better. We’re ‘lucky’ it’s coming into winter with regard to the hot and sweaty aspect!

Good luck with it anyway, and for tomorrow. I’ve got my results day on Tuesday xxxx.