My lovely, IT phobic aunt, (54 pre-men) has been diagnosed with ILC in right breast after routine 3 year mammogram. Had one biopsy at Charing Cross on one area 9mm but MRI on Friday has shown two areas and CC can’t confirm which area they biopsied!! Although scheduled for surgery on 19th January the surgeon wasn’t happy proceeding. He arranged for biopsies on both areas and we are waiting on the results Monday and then scheduled for surgery 2nd February. All good but they haven’t confirmed what exactly they will be doing so I have a couple of questions…if you can bear with me.
Is it normal for a WLE or MX when there are two areas of concern in one breast? They appear to be positioned at back and left of breast so not nipple area.
Has anyone had WLE which was not clear and then had to proceed with MX - with hindsight would you have just gone straight for MX?
Has any one opted for a double MX because of the nature of this particular cancer?
After a MX is treatment normally chemo then radiotherapy?
I think these are her main concerns - along with why me? How has it happened? Have I done anything to cause it?
Thanks in advance for replies - reading your posts have helped answer a lot of other questions.
Welcome to the forums where I am sure you will receive lots of support and information from fellow forum users. I have posted a link below to our new resource pack which may help to answer some of your queries, it’s has been designed for those newly diagnosed, just click on the link to access the order form. You can also order more information publications on the same page by clicking on the links on the same page under the ‘quick order list’.
If your Aunt or you would like to speak to someone in confidence please do call our helpline on 0808 800 6000, the line is open weekdays 9-5 and Sat 9-2, our team of specialist nurses and trained helpliners can offer you both support and information. Hope this helps.
I had ILC in my left breast and after an MRI which appeared to show the rest of the breast was clear, I had a WLE and sentinel node biopsy (to see if the cancer has spread to the lymph nodes). Unfortunately, the WLE histology showed I had extensive LCIS which was not picked up on the MRI or mammogram I’d had at diagnosis, so I went on to have a mastectomy with immediate reconstruction.
With hindsight, I would have preferred to have a mastectomy but at the time my head wasn’t ready for that, and at the time of the WLE I requested the pages in the info booklet about mastectomies were taken out! Couldn’t bear to think about it.
As my nodes were clear, I didn’t have to have chemo or radiotherapy, just given tamoxifen - I was 38 at the time.
Almost two years later, I had a preventative mastectomy and recon, partly because of the nature of lobular and partly due to finding a lump in my right breast and deciding I didn’t want to spend the rest of my life fretting about if and when it would come back.
Am very happy with both my recons and feel as if a weight has been lifted from my shoulders.
Best wishes to you and your aunt - and no, she hasn’t done anything to cause this.
Hi Sally,
Sorry to hear about your aunt, she is certainly lucky to have you looking out for her!!
I was originally dx last May with IDC, after 3 surgeries where they could not get a clear margin I was told I would need a mastectomy. I had asked for one after the second surgery but was told I really didn’t need it. I am quite a large busted lady and it was considered that I could take the surgery. That was when they found that I had lobular cancer as well so a mx was recommended. I immediately asked for a mx on the other side but was told I would need an MRI scan to check first. Mammograms do not always show up ILC as it doesn’t form lumps but spreads out and that is why there is often a large amount. After my mx they counted up all my nasty bits and it amounted to 11cms. It was decided that I would have chemo followed by radiotherapy. My last chemo was today YAY and it really hasn’t been too bad. I am now going to ask for a mx on the other side when rads has finished because although the mri was clear there is often a slightly higher incidence I believe of lobular returning on the other side.
I truly haven’t had a problem having my breast removed and can’t wait to get surgery the other side, I look at it as a time bomb waiting to go off. I know not all ladies feel this way and it may be that I had so many surgeries before the mx.
Get as much info as you can and your aunts BCN is there to help too.
Hope this helps and I wish you all the best with your decision. You will get loads of help and support here.
Love Jane xx
Thanks for replies - have been on to that link Lucy and ordered the pack.
SallyLou - reading the posts I think that is what concerns me/her the most - the fact that a lot of the screenings don’t pick up some ‘in situ’ conditions until after the WLE pathology and having started a redovery process you are then back in for more surgery.
Jane - congrats on your last chemo day yesterday - her MRI came back clear on left side - I know it will be a huge decision if she proceeds with a double MX immediately, but if it will reduce the risk of reinfection and have a higher recovery rate earlier then it may be for the best - as you say the more informed the better.
I will try to get her on the Net to view these forums - thanks again for help it is much appreciated.
I’m very sorry to hear about your aunt’s diagnosis.
I was diagnosed last year with lobular cancer (I’m 45 and premenopausal). I had done a breast check only a month before and even got my husband to check and neither of us could feel a thing. I was given HRT as it was thought that some other problems I was having might be due to starting menopause and within 4 weeks I had a massive thickening (6cm).
It was explained to me that the cancer must have been there but a bit like a spider’s web which suddenly joined up. My cancer was 8/8 oestrogen and 8/8 progesterone receptive so the HRT had basically gave it all it needed to grow. If your aunt’s cancer is hormone receptive which most tend to be then she will be offered tamoxifen if pre menopausal (usually once other treatments have finished) and there are other drugs for post menopausal women.
I had a mastectomy and full axillary clearance on the left side (it had spread to my lymph nodes) and also a risk-reducing mastectomy on the right side (even though the MRI showed it to be clear). Although I’d been too young to start routine mammograms I was told that they don’t always pick up lobular cancer. The surgeon said I would be offered 2 yearly MRIs on the non cancerous breast but to me the risk seemed too great. I have absolutely no regrets about the double mastectomy and have decided against a reconstruction.
I also had chemotherapy and radiotherapy and I’m now on tamoxifen. Treatment plans tend to be quite individual looking at different factors but I would be asking about the rationale of the treatment.
In my case a mastectomy was the only option due to the size of the cancer but also because it was multi-focal.
It may be helpful for your aunt to ring the helpline to talk things through particularly about what to ask the doctors etc. BCC also does some useful booklets which she could request.
Feelings of why me and have I done something to cause it are very normal. I felt for ages that I should have known that I had cancer and was very angry with myself. It’s great that your aunt has your support - I can tell you that this will be invaluable to her. Many of us have found it to be an emotional rollercoaster but those first months are particularly hard trying to come to terms with things.
Sorry to hear about your Aunt’s diagnosis, you have definitely come to the right place for information and support! I was diagnosed in August with a mixed tumour, IDC and lobular. Initially I was told I needed an MRI scan for the reasons mentioned by others on this thread, then I was phoned at home and told I didn’t need that as they were absolutely sure my cancer was confined to the one area on my mammogram and my films were very clear. I had a WLE and a 1cm tumour was removed. I had clear margins and no affected nodes. So my treatment has been 15 rads and Arimidex as tumour hormone receptive.
However given the nature of lobular cancer I too am constantly worried whether or not it will return in the same or other breast. I have to see my oncologist next month and I intend to discuss this with her more fully. Please reassure your Aunt she is totally normal in feeling that she may have done something to cause her cancer, I too felt this and even now six months on I am still thinking of things that might be to blame, even though I have always lived a very “balanced” life regarding diet etc. I think its human nature to want to know why it has happened, but unfortunately there isn’t an easy answer.
Ali, your aunt’s story sounds very familiar. I was dx with ILC in Dec 2008, following my first routine mammogram. I was 52 at the time. I had an MRI which showed up another suspicious area. I had further biopsies which thankfully turned out to show calcification. My lovely surgeon was very concerned for me not to have a mastectomy unless it was absolutely necessary.
I had a WLE in Feb 2009 and radiotherapy in May/June 2009. I’m now on hormone therapy and being referred to gynea for my ovaries to be removed, as I’m pre-men too. Because I was dx 2 weeks before Christmas, it was 6 weeks between dx and knowing what surgery I was to have. The longest 6 weeks of my life! But I am happy that I was able to just have a WLE and I know that I am being looked after by a great team and that I will get checked regularly. But it’s a very personal decision. I am not a worrier naturally and feel I can live with it.
As for why me? We’ll never know. I had no risk factors at all, other than being over 50 and still not menopausal.
Feel free to send me a private message if you feel you’d like to.
I had lobular cancer and was originally scheduled for a lumpectomy when an MRI showed another area. After talking to the surgeon, I agreed to a full mastectomy. I did not have a recon because the hospital i was at did not do them and i would have had to wait at least three weeks to have it done at another.
That was the right decision for me, another spot of cancer was found and it was upgraded from 2 to 3 and I had lymph node involvement too.
I do know that with lobular there is a higher chance of a new cancer developing in the other breast but whilst it is higher it is still relatively small and so I choose to put my faith in regular mammograms.
Looking at it now I ticked a lot of boxes for getting bc, strong family history, early menarche, late pregnancies, fertility treatment (suspected but not proven) and fluctuating weight over a life time. However, there will be women with all of these who will never go on to develop bc and ones that have none of them that do. It takes a long time but your aunt needs to getting away from blaming herself and wondering why (the onc and bc nurses will tell her this).
I had a mastectomy, chemo rads and now i am on tamoxofen, that was because of the nature of my particular diagnosis and we are all different.
so sorry to hear of your aunts recent diognosis .i have hadlobular in left breast diognosed in 2006 ,had chemo to shrink the mass then max and more chemo then rds as i also had lymphnodes that were infected and removed ,am on arimadex ,i also have liver spots from original cancer but to date am relatively well apart from the aches with hormone drugs ,my hospital does not do automatic removal of other breast if no evidence of cancer so i do have to woory of it coming back in that breast too ,but im so grateful to be this far down the road and still here .
i do hope your aunts treatments go well .huggs , lynn
Thank you for all your replies - there was good news Monday - the 2nd area has come back as “benign”. What that determines we don’t know yet but at the moment Kate is scheduled for guide wire placement Monday and then WLE and SNB on Tuesday. So a bit of a relief.
Salopets - Kate wanted to say a special thank you as you are in the same age bracket (no offence!) and your diagnosis seems very similar. It was a relief to her that you have had such a good prognosis.