Welcome though I know you would rather not be here but you will find lots of support on this site.
I was dx Nov had wle and snb 13 Dec because they didnt get clear margins had to go back for mastectomy on 31 Jan. It was grade 3 IDC 44mm. Though it was probably bigger than that I havent got all the info about mast results yet although I know they got clear margins this time.
The mastectomy is not as bad as you think it is going to be and you will be offered reconstruction - I am having rads so will have to wait for my recon.
This is a wonderful place for support and any queries just give a shout and someone will come and give you an answer. All of this is still really new to you - it is to me - so you have every right to be weepy.
Firstly, welcome to the forums, I am sorry to read of your recent diagnosis. I just wanted 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 during this time as they can give information about our other support services and also offer support and a ‘listening ear’. The number to call is 0808 800 6000 Monday - Friday, 9am - 5pm, Saturday, 9am - 2pm.
Is there no chance of having a separate heading for lobular? I have asked the moderator many times but to date I’ve had no response. It would be very helpful to women who have had lobular BC but do not wish or don’t have the time to trawl the BCC website.
Karen, thanks for your words of encouragement. Makes you feel better when you hear it from someone who has gone through it herself.
How are you coping without your breast? I am quite large busted and it will be very noticable! Shouldn’t so vain really.
Can you give some tips about what to take into hospital, heard that button through pjs are best? If so will have to go a buy some - shame more shopping!
I wish you well for your results and hope you don’t have to long to wait.
I thought I would be really stressed out by the mast, but see it as getting rid the cancer. Wasnt sure about looking at the scar but it really was ok and its not going to be forever.
Either button through pj’s or the strappy vest tops are ok. Do you know how long you will be hospital for? Its seems to vary quite a lot I was in for 5 days.
When I came out of hospital I was given a comfie or softie and it made me feel brill, it is really comfy to wear and gives you symetry back.
I am quite large busted 40c but with the comfie in people cant tell which one is the falsie.
Do you need to buy a bra, all mine are underwired? I am 38G so a lot of space to fill. You are right the first priority is to get rid of the cancer. Will have to deal with the rest as and when or if it happens.
I think I will be in for between 4 and seven days depending on drips etc. Unfortunately I have to go to the Marsden in Sutton as the theatres in the Fulham hospital are out of action - I live not far from the Fulham Road branch.
The hospital gave me a bra just a non wired comfy one. I ordered one from Aneoma (Ithink that is spelt right) but go to the search at top of page and put in mastectomy bras and you will get several different ideas.
Just read all your messages and share the concern many of you have that the ILC found in my right breast might occur in my left. I was first diagnosed with LCIS from a biopsy of calcifications last February. Then, after a lumpectomy, the diagnosis was changed to ILC and, when that didn’t yield clear margins, I had a second lumpectomy with the same result and a mastectomy with immediate DIEP flap reconstruction in July.
Because of my anxiety, I arranged for a mammogram to be done privately last week on my left breast and it showed areas of calcification, so the radiologist has asked for my NHS mammograms from the previous year to compare. This doesn’t sound like good news to me, and I dread the idea of going through everything all over again. It’s weak of me, I know, as I haven’t had my fears confirmed and my prognosis is still good, but I can’t help it.
I intend to press my surgeon for annual mammo and MRI scan of the remaining breast he did all this prior to the mastecomy and like one of the other ladies I won’t take no for an answer…I have the Aunt from hell who pushed the hospital pasted all the regulations at Christmas as they wanted to make us wait 2 weeks over the season not knowing if I had cancer or not while everyone took the Xmas break… the stress was unbearable and they had the pathology results in 48 hours and they did tell us…not the news we wanted but at least we knew one way or another! Jane…I know exactly how you are feeling…coulden’t stop weeping but the mastectomy felt like them taking out the cancer so I was wanting it done asap really…I was only in for 2 days but everyone is different and that was 5 weeks ago now and gets better all the time…how old are you Jane? I took into hospital cotton front opening PJ’s and the ususal hospital stuff magazines,slippers etc.
Thinking of you and big hugs
Lizzie xxx
This thread has been really helpful and supportive. I just wonder how we can get an MRI scan on the NHS? I had a private scan after I was diagnosed as the NHS could not offfer me one for 3 weeks and oh the waiting. I got the feeling from my surgeon that this wasn’ t ‘the done thing’ hopping between NHS and private (althopugh my space on the NHS could have been given to someone else) - I would just say that we had to scrape the money together between the family which I really really appreciated.
Val, I don’t think you can get an MRI, on request, on the NHS, but I might be wrong. Also my consultant discouraged me from having one as he didn’t think it the best way to get a diagnosis (this was some time ago, so I can’t remember why). Like you, I think the waiting is the worst thing. When something’s definite, I can deal with it, but not knowing is hard.
Jane, good luck with your mastectomy on the 29th. As I’ve said, I had mine last summer, and I want to reassure you by saying it wasn’t as bad as I’d expected, and am sure you find the same. You still will be you and have lots of life ahead of you. Like Lizzie, I took in button fronted PJs - not the most flattering nightwear, but the most practical.
I’m seeing my consultant tomorrow. I phoned my BCN two weeks ago to ask if I could have a MRI scan instead of my two yearly mammogram which is scheduled for tomorrow. She said NO, mammograms were better, but I will be able to discuss it further with my consultant at my appointment. I’m not wanting to be difficult with him but I have had ILC at Stage 3b in my right breast. I have recently had sight of my hospital medical records and have discovered I have calcifications in my left breast. On the subject of calcifications, my BCN said thousands of women have this condition. It doesn’t mean you go on to have breast cancer. However, I feel if you have had BC then it’s something they should be monitoring closely. Had I not had sight of my hospital records, I would never have know about the calcifications in my left breast.
I will keep you posted as to what my consultant tells me tomorrow.
I too am a lobubular girl. Dx dec 21st 2004 after my fist mammo- confirmed by ultrasound and biopsy. 6 rounds of chemo first then the choice of extensive radiotherapy or a mastectomy ~ had already decided to ask for a mast ~ so had the op in July 05, still a significant area of active cancer. Had 15 zaps in the November ~ waited 12 weeks [too long IMO] After a lot of thought I went to my oncologist with a list of reasons for a proteolytic mast of the healthy breast, there is family history on my paternal side { tested neg for BRACA 1 and 2]. anyway he said yes without me having to go down my list! had the op May 06 with tissue expanders and had the exchange Dec 06. Took Tamoxifen for a couple of years and am now on Arimidex. I asked about having a MRI scan but it was a no goer. I just wanted to take control really and have no regrets, its the family history that pushed me into taking the course I did. Had I been the only one I may well have continued with the yearly mammos and maybe paid for a breast specific MRI in the future.
Jane ~ I took PJ’s and a draw stringed fabric bag in which I carried my drain! although the ward provided them [made by thoughtful freinds of the Hospital] I was also given a smallish heart shaped cushion to fit under my arm ~ this was very comfortable and a real godsend. I also had lots of wipes! for every area of the body and surfaces! Superdrugs profits shot up that week! A potable DVD player came in very handy too! I was in that time for a week and the food was a hoot! dreadful! so the next time I took in plenty of snacks! Good luck for the 29th.
take care all
Rosemary
I was diagnosed in July '04 with multi-focal invasive lobular b.c. and dare i say I’m doing o.k. so far. I just wanted to send you all my very best wishes to you all as you go through your surgery and treatments.
I think it would be useful if this thread could be copied on to the just diagnosed forum. I’m used to the BCC site but don’t usually look at this forum and only came across this by accident. It’s difficult to get info on lobular b.c. so if the moderator could put this thread where the newly diagnosed have more chance of finding it maybe it would be of help to someone.
Sorry but not had opportunately to read your replies until today - am still working until Wednesday next week.
Lizzie, I am 57 years young. I am so pleased to have this site to read and speak to people, it helps so much to know others are feeling the same. Also thanks for your advise on what to take in to hospital next week.
I saw the surgeon on Monday this week and explained how I was feeling and she asked to examine me - of course I agreed. The outcome was that she had said they will take out the lump and sentinel node for examination and make good what is left and at the same time do a reduction on the other side. I feel quite relieved about that now but also they will check what they remove from the left breast also although nothing showed on the MRI scan. She did say that I still might need a mastectomy depending on the results but it would be easier to do reconstruction at a later date as left breast would be much smaller. G cup now but not sure what size I will be but at least the cancer will be gone. All sounds a bit vain for someone my age especially when I read what some of you are going through.
Once again thanks for your support and I wish you all well with your treatment.
Just been reading back through the postings and wonder if anyone can answer a couple of questions I’ve just thought of: Will the chemo I’ve just finished have killed any cancer in my healthy breast and what affect would it have on the calcifications that they’ve found? I am seeing my consultant in a couple of weeks, so can ask him then, or I could ring a helpline, but thought one or more of you might know?
Jeannie - hope you had a good result from your mammogram.
Everyone else, good luck with what ever you’re going through.
Hi Moira,
Chemo is systemic therapy and so should in theory damage all cancer cells, wherever they are in your body. It would probably not have made any difference to the calcifications though, as chemo works on fast dividing cells. I asked my onc about whether chemo would affect LCIS - and he explained that because LCIS is not (yet) fast dividing cells, chemo would have no effect on LCIS. Hope this helps.