I was diagnosed on 2nd January (My daughters 14th Birthday) with grade 2 Lobular cancer in two places in my left breast. Had an MRI scan only to show that it is one large tumor of 47mm has anyone had the same? So far they say that they cannot see any node involvement but I know that can change at surgery, which is the scary part; Would node involvement have shown up on the MRI?? I cannot get to ‘positivehead’ mode although I am being told that I am ER+ (G8 I think the BCN said) which I am being told is good news so far as treatment is concerned. Iam waiting date for MX and recon with implant. Can anyone offer any positives with regards the size of the tumor, so scared that it’s been having a party for ages and could have spread as I have also been kept awake at night with hip pain and heavy legs in the last week.
Hi wax2014, I also had invasive lobular cancer which originally showed as 14mm on MRI scan but turned out to be 50mm multifocal after my mastectomy. Lobular cancer is very sneaky as it tends to grow flat or more of a thickening than a lump hence why lobular tumours seem to be larger when found. My nodes looked normal on the scans but they did find micromets in the first sentinel node but the others were clear so full clearance wasn’t needed. I’m currently going through chemo as a belt and braces approach and will also have radiotherapy plus tamoxifen for 10 years as I’m also er+ (G8). I opted for a bilateral mx with immediate reconstruction with implant and strattice. Surgery was fine and I’ve been very happy with the results.
Stay positive, all aches and pains will be hypersensitive right now. You will get through this and go on to live a long prosperous life.
Hi there, I’m not sure it’s my place to post but your story sounds very similar to my mum. She was diagnosed last summer with invasive lobular breast cancer and had a mastectomy last September. The tumour was 50mm and strongly oestrogen sensitive. She had a SNB at the time of the mastectomy and her nodes were all clear. She is now waiting a reconstruction with an implant. Wishing you all the best xx
Hi wax, chemo is going ok, it’s not as bad as you automatically think, it’s doable! I’m currently cold capping but my hospital doesn’t have the paxman, they still use the gel caps which need changing every 20 mins. I’m on 4 of 6 sessions and still have some hair however it’s thinned a great deal. I’d say I’ve lost over 50% which sounds like a lot but it’s even and I can still look normal at home for the children. I do have a wig which I now wear when I go out as I don’t feel comfortable with the hair loss. There’s several women on the November newbies thread who have cold capped using the paxman system and are having excellent results. Their hair has thinned out but you can’t tell this on the photos.
Like you I asked for a bilateral mx for piece of mind as I knew I’d always be checking and wondering. I did need to see a councillor before the op as the hospital is not allowed to remove a good breast without checking your state of mind. It was certainly the best decision for me but I’ve seen a few posts where hospitals are recommending patients wait until after the initial surgery.
Hope you’re doing ok, stay positive, you will win this war!
I’m fairly new here, and struggling to find anyone with a tumour the same size as mine. I’ve been told it is 14 cm by 8cm. So that’s 140mm!!! I’ve been so panicked since I found out on Monday. But I went to see my GP today and she said the size isn’t the issue, really. Wax2014, like you my daughter is 14! Have you told her? My consultant told me not to tell mine, but she’s so bright she knew something was up and pestered us. I’ve promised I’ll never lie to her. I have to have MRI, Bone and CT scans nexxt week. Praying that all is well but I agree Wax that the lump size can be scary, and the unknown as to where else it is. It’s so good to read about others further ahead on the journey - I’ll ask about the Paxman cool cap system. I’m to have chemo first before surgery. I’m very new to this, is a bilateral Mx where you have both breasts removed? I so want that but my surgeon thinks I’m daft, and wants to do a reconstruction of my right breast after. I don’t want that at all - I just want to know they’re gone. Can one ask?
Hi lollymum, the consultant is correct regarding the size, it’s the grade which matters more (how quickly the cells divide). Lobular does always seem to be larger than ductual but this is purely because lobular grows more like a thickening than a lump and is therefore harder to detect. A bilateral mx is both breasts and if your not happy with a lumpectomy you need to stick to your guns and let your consultant know. I had an MRI scan and there was nothing in my right breast but I still pressed for a bilateral mx, it was right for me.
Hi lollymum, tracy has answered some of your questions and you have both put my mind at rest about the tumour size,thankyou. As for telling my daughter it was ,for us,the hardest conversation we had with her especially on her birthday…but we had too because how else could we explain where we were going on her special day ! As you say they know when something is not right and its best that they understand without leaving them to think all sorts. She doesn’t like talking about it and i have just told her i’m here if she needs to ask anything. I sometimes think she’s bottling things up as theres been no tears but shes dealing with it in her way,very grown up and i’m so proud of her. Have you told the school?, i think thats a good idea incase she gets upset whilst there , at least the teachers will know without having to ask to many questions. I have finally got a provisional op date of 1st March and have pre op tests tomorrow. Keep in touch ,i find this forum really helpful because no one understands as much as someone in the same situation. Take care …wax xx
Hi lollymum, it’s quite normal to be hypersensitive after the diagnosis and worry about every ache. I also felt pains in my breast and back. Hang in there, it will get easier as you begin your treatment plan.