Lobular breast cancer just diagnosed
Hello everyone, I'm new to this , I've only found out about my diagnosis one week ago and been going through a lot of testing over the week. I'm waiting on results of MRI on breasts, I had yesterday but wont find out anything till Monday afternoon. Also on Monday early morning I will have a pelvis CT scan to look at my liver as the liver function test is up. I have (so far) been diagnosed with one lump in left breast about 5 cm and smaller one but deeper in right breast. I've seen my specialist and he said they are Lobular and that they can't be treated with chemo. I see him again on Monday avo, I'm quite scared. He didn't seem to think my lymph nodes were swollen under my arm, but he wasn't sure. Does anyone here know if the breast MRI with contrast that I had yesterday will show up if the lymph nodes are affected? Can anyone tell me if they have or have had Lobular breast cancer? My specialist isn't the talkative kind and I can't help worrying. Hope someone can reach out to me I feel so alone as I know Lobular is more rare than the other types.
Difficult decisions
Hi, I was diagnosed with lobular breast cancer on 24th January. Stage 1 - clear LN. Er and Pr positive, HER2 negative. I've had 2 lumpectomies now and still no clear margins. The second op found another 10mm focus of tumour which was not seen on U/S, Mammo or MRI. So my choice now is whether to try a 3rd lumpectomy for clear margins or go for a mastectomy. I've been told if we get clear margins the recurrence rate for lumpectomy and mastectomy are the same. But my niggling fear is the fact that this second focus of tumour wasn't seen on imaging. And lobular cancer has a higher risk of being multifocal so what if theres more in there. So I'm leaning towards a mastectomy. Does anyone else have experience of this scenario? The surgeon has said both options are totally reasonable.
Making the ILC group a PRIVATE GROUP (instead of Public to the world!)
Hi guys At this point in time, the ILC and Young Women's groups are totally PUBLIC ..... anyone in the world can see the posts. I've put a request in for the ILC group to be private ..... so that we may discuss issues and developments in total privacy .... I have posted this in the ILC Group as well ..... General 'info' posts on ILC can be put in the Group AS WELL AS in the main forum, as I realise that not all members with ILC are a part of the group. But this way, if we have more personal/delicate matters to discuss, we can do so in total privacy, I know that the Group Posts are not necessarily sent to all members, so I would appreciate it if you would agitate for this to happen. I will tag @Carissa_BCNA in this post as well, to see the response, as she will help accomodate the request, dependent on the replies. Please make it a YES cheers Arpie We don't even have ILC or Invasive Lobular Cancer as a 'tag' .....
recovering from double mastectomy with Bella's help!
So I had my double mastectomy recently with expanders put in at the same time (photos to follow in 'Choosing breast reconstruction' when I am a bit further along) for reconstruction and when they examined the breast tissue afterwards they found more DCIS, 10cm in total and I was small breasted! and in the other breast which was a prophylactic mastectomy they found lobular cancer so thank goodness I had the double mastectomy. The operation went very well and the Doctors and Nurses were brilliant. This made me laugh :) . My husband took this picture of me and my Poodle Bella sleeping after coming home from the hospital. She stole my lovely Zonta cushion given to me in hospital after my second lumpectomy and much appreciated since <3. I was in hospital for a week in the end after the double mastectomy waiting for one of the drains to ease up. Being diagnosed with breast cancer feels like living in a nightmare so I hope this makes you smile and sending love and strength to all you lovely ladies and men in your breast cancer journey :* <3 xxx
Chemotherapy
i had a a bilateral mastectomy 3 weeks ago today, the cancer was lobular carcinoma. At 7.5 centimetres. The surgeon told me I would need radiation and I would have to take hormone blockers as it was estrogen positive. I saw the oncologist yesterday and he is suggesting chemo, he said he’s not insisting but suggesting I do it. I have diabetes and also suffer diverticulitis which is a bit tricky, but can be dealt with he said. When I read all of the side effects that I could get I almost took fright. According to the tests etc I have a 10% Moore chance of the cancer not returning if I have the chemo, radiation and hormone blockers than if I don’t. Has anyone been through this and is chemo as bad as they say. I would like to live a full life as long as possible. Anyone out there able to help.Another newbie here - going through the process! and travel plans??
I’m sure life likes to create a few bumps to see how you cope! This one can be my last!! So 48 and had a routine mammogram and ultrasound on 9/3/18 - only booked day prior after having referral a few weeks, more concerned with my B12 deficiency. Had biopsies same afternoon and long wait for results until late following Wednesday and Surgeon booked next day. All fast and surgery last Monday 26/3/18. Back to Surgeon today and in for more surgery to ensure clean margins tomorrow. I have lobular type - still getting my head around this and look like with need hormone therapy. Referrals for radiation etc. being done today so the wheels are still turning. Trying to be positive and treating as a process _ but seeming a big one right now!Scared and confused
Hi my name is Helen. I was recently diagnosed with a Grade 2 lobular cancer on my left breast. Sentinel node biopsy confirmed 1 node was involved and tumour size was 12.7cms at time of surgery. So disappointed because neither scan, or ultrasound picked up the size. Just had double mastectomy and auxiliary clearance came back clear. CT scan was clear as was the bone scan.Will be starting chemo soon, followed by radiotherapy.Just wanted to hear from anyone who has had a similar diagnosis. Need reassurance because very upset at the moment. Just turned 50!
Invasive lobular gr 2.. best treatments?.
Hi I am getting mixed msgs from my breast surgeon. At the beginning of all this I was told I was unlikely to need radio or chemo. Then it changed to prob need radio. Then it changed again to radio not as necessary but I may need a short course of chemo. Then today when I saw her replacement (she is now on mat leave), he said that if I were his wife or sister he would want me to do both!! Oh and on top of all this I am told that invasive lobular is most responsive to hormone suppression (which I haven’t been offered yet and is in the pipeline for after treatment.. thinking it should be sooner?...) I now have my pathology and turns out I have gr2 invasive lobular er+ and moderately prog+ but her-. Tumour was cleared with clear margins but was close to chest wall (hence considering radio). Was 4.8mm and only found in 1 sentinel node .8mm. I was told chemo is recommended for tumours over 5mm and in 3 nodes... so I am borderline.. Surgery so far has been sentinel node biopsies followed by double mx with skin sparing and direct to implant. Right nipple was taken but found to be cancer free (I feel a little ripped off about it) and left breast tissue was completely clear of cancer, but dense tissue so hard to screen. My concern is that I have had all cancer chopped out as far as anyone knows and that they are recommending the works because I am 40 and in good health. I want to stay in good health and am concerned about the impact of unnecessary treatment. I have also been told that invasive lobular doesn’t respond particularly well to chemo anyway... To confuse matters further another surgeon who looked at my results but doesn’t know me (he treated my mum) said that radio is unwarranted but that I should have chemo... Has anyone else had similar issues?
Letrozole
just need a little reassurance.... I was diagnosed with lobular carcinoma her 2 positive nodes positive on oct 2015. Now I am on letrozole, the balls of my feet feel very sore when I get up in the morning or when off my feet for a while then I stand up. Unsure if it is a side affect of the tablet or chemo ?? is there anything I can do to make it less painful
