Hi all,
Had left mastectomy Monday after first op removed the initial lump which they thought was 30mm but they found it was 60mmx70mm. Friends are trying to say the right thing like “well at least they found it early” but it is obvious now this is quite advanced. All my scans are clear for secondaries but it had spread to my nodes which they took out on Monday too. Are there any folk on here who had a tumour so big successfully removed? I have had a nosey around and I can only find small tumours mentioned on the posts…which is worrying me.
It was an invasive lobular BC which I only ever felt as a thickening and it didn’t show up on the mammogram.
Just looking for a bit of reassurance really.
Thanks
XX
Hello Sallyann13
Welcome to the forums. Many of our users have a wealth of experience and I’m sure they will be along to support you soon.
In the meantime you may find it helpful to contact our free helpline on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00.
with best wishes
June, moderator
Hi Sallyann, Sorry you have had to join us, but pleased your operation is out of the way, hope you are feeling ok?
I had to have three ops, lump, wider margin then mx. l also had lymph node involvement, and am almost half way through chemo.
Really pleased your scans were clear, that is always a relief!
As for your question to the size, not something l have looked for, but l do know ladies on here that had a 90mm lump removed, l am sure there will be lots telling you how big their lump was.
I know a lot of the ladies with big lumps sometimes have chemo first to shrink the lump, then have the op.
I will let them explain. Look after yourself
Love
Sandra x
Hi sallyann13,sorry you’v had to join us here.There a quite a few women on here who have had large tumours,as moderator has said I am sure they will be here soon to help you.I had quite a small tumour but still had node involvement and lots of vascular invasion, my Breast care nurse said that sometimes you can have a clever little bu–er or you can have a large gentle giant.
Wishing you all the best Mel xx
Hi sallyann
Just to agree with melly. My tumour was v little and still had node involvement and vascular invasion. Try not to let it get you down too much. You have a long way to go and need to keep your chin up. Let’s hope you have a gentle giant. Dx
Even tiny tumours can spread sadly - my mum’s tumour was very small, to the extent that she didn’t even feel a lump (her nipple had started to turn in) but it had already spread to several lymph nodes. I had thought that a small tumour meant it must be very early and easy to treat…but sadly it isn’t always the case. Wishing you well with your treatment x
Hi Sallyanne
I can’t help you with the op as i haven’t had mine yet (11th Aug) but my lump was 60mm by 60mm. I had chemo first to reduce the size, which it has but it has split into a few pieces and covers the same area. i have seen a few posts on here about larger lumps.
I have been concerned too about the size of the lump but my scans were clear also. My lymph nodes look okay but they have said they won’t know until they operate. it seems every cancer is different and the size doesn’t really indicate how the cancer behaves.
I hope all goes well for you you get some reassurance
Love Jaynexxxx
Hi Sallyanne
I agree with the others that tumour size is often not a useful indicator. My tumour was relatively small - 25mm - but had already spread to my bones. The extent of lymph node involvement and any vascular invasion is probably more significant, together with hormone status and grading.
Thank you everyone for your helpful advice- it has definitely reassured me. I have rung the helpline being new and spoken to a lovely lady who was really supportive.
I can appreciate now that everyone’s situation is different- I was reading the forum posts and worrying that folk were receiving treatment that hasn’t been mentioned to me and talking about allsorts that I didn’t know about and began to panic feeling that the nurses were keeping things from me etc…
I now can see from your range and depth of experiences that it won’t do to compare and that the cancer is as individual as the personalities it attacks.
I have learnt a great deal today. Thank you everyone for taking the time to reply to me today XXXXX Best wishes to all.
Hi Sallyanne
I think it is a shock to everyone when they are first dx to find out just how many variables there are with BC, and what a complex disease it is. So it takes a while to find out exactly what is going on with your own cancer, and also quite a bit of research just to know the right questions to ask. Understandably the oncs tend not overload us with information at the start - there’s enough to deal with just with the shock of finding out you have cancer. But if my experience is in any way typical, you’ll find with each consultation you will want to know more. I was too afraid of the answers at the start - but now I have got used to the idea I can ask the more difficult questions (still don’t like the answers though!).
If you feel up to it, I think you can also ask to receive copies of the correspondents between the doctors in your multi-disciplinary team (usually a breast surgeon, oncologist and oncology radiologist). This will details lots of technical stuff that you can then research at your leisure. I was given this option - but I am treated privately - so I guess it’s possible it may not be the case on the NHS.
If you feel up to it, I would recommend finding out all you can about your cancer and treatment options - it doesn’t do any harm for your onc to know that you are keeping tabs!
hello im elaine so sad to hear your news my tumor was 90mm in still on chemo had to do 8 sessions 4 ac and 4 taxatere thought it wud be better for me to shrink it down i had screening last wk its is now 20 mm with 2 sessions to go chemo works for me not pleasnat but doable they say you have to be cruel to be kind or no pain no gain either way its working i hope everything goes gud for you as it is doing 4 me i keep my fingers crossed when i say that keep me posted
Hi yes I was in your position, originally told at at Diagnosis my tumour was around 2cm, has lumpectomy and it was 4cm - no clear margins so had masectomy and found another 5cm - my total tumour therefore 9cm (90mm). I was very shocked. however the tumour has been removed and gone so the size of it isn’t really the issue, the issue is that as it was so big it was probably there longer or fast growing and its the spread thats the main factor. I did have spread to lymph nodes too 9 our of 24 and had clearence. I am unsure about vasular invasion as I haven’t had the courage to ask - I may pluck up courage one day but at the moment I am not ready for this information.
I have had clear scans so at the moment there is no further spread and I have had 3 FEC and 3 Tax, have just had my 2nd Tax, so only one chemo to go. I will have radiotheropy 15 sessions and hormone therapy for 7 years.
I am hoping that all this treatment will do the job and kick the cancer in the butt!!
ps a friend of mine had a tumour of 15cm (yes 150mm) she had chemo first and then Max - she may pop on here and tell your her story!
x
I too had a larger than originally thought tumour when they operated. I also had lobular bc but strangely was HER2 as well. I have only 2+ years later discovered I also had vascular invasion. It is very common particularly with lobular bc for the tumour to turn out to be larger. As you say lobular is very hard to detect even on mammograms - myself having a mammogram 15 months earlier and it was not detected then. As I understand it lobular shows as a spiders web effect. Not a solid tumour. I question how they can accurately even say the size if that is the case. I had 4 FEC & 4 taxotere & 18 herceptin. Sadly because of spread to lymph nodes I developed lymphoedema.
I had my dx in Feb and have recently asked for a copy of my notes, I too have ILC, which tends to be larger, mine was multifocal and altogether >7cm, plus high grade DCIS. As you say, comparisons are not really helpful. Every case is highly individual and your prognosis is a sum of many parts. Take Care, Tina.xx
I was told my tumour was 1cm, probably hormonal and very slow growing. Three weeks later after a lumpectomy I was told it had been 2.5 cm, extremely aggressive,triple neg and so full of vascular invasion I wasn’t expected to get through chemo without it returning. I had 4xFEC,4xTAX, six weeks of rads and am coming up for 7yrs ned!
Josie x
Hi Josyemarie
Your post is the post l could sit and read all day and all night!! Lol!
Love hearing good news! Well Done!
Love
Sandra xxx
Thanks Sandra…and may my luck rub off on you all xxx
Hello Joseymarie,
I could read your posting all day too.
Love hearing great news - long may it contuine.
Love Dotty2xx
Hi Sallyanne and everyone on this site,
I to have newly diagnosed invasive lobular breast cancer, and an MRI shows a spread of 7.5cms. Mastectomy next monday (26th). I am completely ‘head in the sand’ about the next bit, as it is such a shock, and a large tumour, but reading these blogs it seems that (as in other things in life), size is not everything.
I am an NHS patient, and am getting copies of all the correspondence from the hospital to my GP, but having had a crash course in breast cancer over the last few weeks, find I am just terrified of even reading the letters; everything looks so much worse in print.
I went three years ago for examination of the lump, but was told it was a thickening of breast tissue, and followed up last year by a negative mammogram, assumed everthing was alright. Who knew that lobular bc doesn’t show up on mammagram?
Anyway, at the moment, my needs are practical; please will anyone let me know how soon, and how, I will be able to get dressed after a mastectomy? I usually wear 34G bra, so I really can’t go bra-less while everything heals. I gather under-wiring is out of the question. Any and all advice for a ‘newbie’ will be welcomed.
take care x
Hi nidavellir, lobular is a sneaky cancer, I had no lump, just a thickening which would not go away and the mammos were clear, the us picked up the two tumours and lobular cancer often presents with larger tumours.
Take pj’s with button up/zip up tops, this helps to avoid overhead action, and amoena uk has a good choice of post op front fastening bras.
Take Care and all the best for your op! Tinax