Diagnosis yesterday of Invasive Lobular Cancer

Hi, I have just been given a diagnosis of invasive lobular cancer after noticing large hard area in my left breast and nipple area changes. At the moment I have told nothing more than that I need an MRI and CT scan to find out how big it actually is and if it has spread elsewhere before deciding on treatment, possibly a mastectomy. I am currently in shock and fear of what is ahead, especially as I am as single parent. Can anyone tell me their experiences of this type of cancer and what the road ahead might be?

17 Replies

  • Being in shock is the most natural reaction to the news you've been given, you need time to take in what's been said, easy to say but at the moment try not to worry about what surgery/treatment you'll be having, concentrate on your scans, what happens after that is for another day, you say you are a single parent, how old is your child/children, do you have a good network or friends and/or relatives to help you, when you've had your scans post up the results along with your treatment plan as one of the lovely ladies on this forum would have been on a similiar journey, sending you and your family loads of love and hugs xxxx

  • Hi Jenny, my daughters are 17 and 14, I only have an elderly mother but I do have a some close girl friends who I know will be there for me. Hoping to have my other scans this week and then an appointment the week after to really know for sure what I am facing, I will let you know... Lovely to have the support of this forum and others who have been through this journey.

  • I had the same 2years ago everyone is different just take each step at once to let things sink in. I'm back at work been back over a year. You can do this we are strong. Keep in touch 😉

  • Sorry to hear your news, we've all been at this stage, and yes it's scary, can I suggest that you take somebody with you when you get your results as sometimes it's hard to take in all that you are told. Another suggestion is write down any questions you might have,as your mind will probably overload when you get to the appointment and you'll forget what you want to ask. Good luck.xxx strange as it might sound, I felt better when i knew what I was dealing with.xx

  • Thank you, yes I will definitely have someone with me as my head is definitely swimming at the moment

  • Hello, your story sounds exactly like mine. I was diagnosed with invasive lobular carcinoma in November last year. It is terrifying, but like another lady said once you get your plan in place and things start moving you do feel a bit better. I had a mastectomy because mine was a large tumour, 7 cm followed by 15 radiotherapy sessions, i didn't have to have chemo as i had the Oncotype test and it came back as a 9 (low score). I now take Tamoxifen daily as mine was ER positive. I've been back at work full time since Easter and i promise you there is life after breast cancer. I won't lie, its not been an easy few months and sadly its not a ride you can get off once its started, but you do get through it. Great idea about taking someone with you when you get your results as you might not remember things when you come out. Hopefully you'll have the support of a breast care nurse too, mine was fantastic! H xxx

  • Hi, all I know at the moment is mine is being described as a large mass. Can you tell me what ER positive is as I don't know all the terminology yet or questions to be asking? One thing I wanted to know was that they said a mammogram does not pick this type of cancer up very well, hence I am having an MRI next week. If that's the case then how do they give you check-ups after do you know? My head is all over the show at the moment and it was especially hard telling my teenage daughters, the youngest of whom is very frightened they won't be able to make me better. Glad you are back at work and lovely to hear you have got through your ordeal of this and come out the other end, Thank you

  • Had the same in 2011. Huge lump and 11/12 lymph nodes. HR+, Gr 2. today I am fine with no further problems. Lots of love and please don't worry. xxx

  • Hi, thanks for your reply and good wishes, I am very in the dark about all the terminology, what is HR+? I don't have a grade yet, am guessing until I have the MRI and CT this week (already had a bone scan) they won't know the full picture. Very glad to hear all is well with you though

  • Hi again. Sorry about the jargon. HR+ is hormone positive i.e. receptive to hormonal treatment. Stay positive. Chances are you'll be fine and have a long and happy life. xxxxx

  • Hi there

    On the Macmillan online site there is an abbreviations list which is very extensive about all the different abbreviations are x

  • Hi, I am also a single parent and was diagnosed with breast cancer with lymph node involvement and had a mastectomy followed by chemo and radiotherapy.

    My diagnosis was 7 years ago. I am still here, still living a normal life and still working in my job.

    There is life after diagnosis and treatment.

    You are still in the very early stages and should take each day at a time. The outcome may workout better than expected, so although you are in shock just now , take deep breaths and don't think about the future just now.

    One day at a time , that is what you should think about.

    There are many people on this site who can give you advice on how,to get through it and how to live after it.

    You don't know the results yet of any tests.

    I am hoping the results of any tests will not be too grim for you.

    Find out if there are any support groups near where you stay and if so, go and talk to them. There was one near me and they had people,that you could go and talk about how you were feeling, and they gave me advice.

    You are not alone, we are all here for you . There are lots of us who have gone through it all and come out the other side, so ask any questions you want.

    Best wishes and I hope your tests get better than expected results.

  • Thank you so much for your lovely reply, I am trying to take one day at a time but will feel better if that's the right word once I have the results of all the tests and really know what surgery/treatment plan is ahead. My daughters were very upset when I told them but we have some lovely friends who are there for us. Its nice to have discovered this forum and to hear others saying they have come out the other side, I guess no one can really understand better then someone who has already been there.

  • Hi yeah the hardest part of it all was telling my family about my diagnosis, as there is no easy way to tell them.

  • I am sad to read of your recent diagnosis. Its absolutely devastating when you get the diagnosis and hard to think of anything else immediately. For me it got better once I had a clear idea of the treatment journey. I have had amazing treatment, everyone has been so compassionate and kind and I hope you also find the drs, nurses etc are similarly fantastic. I wish you all the very best. Caroline

  • Thank you for your reassuring words and good wishes Caroline. At the moment the main 'torture' is waiting for other tests to be taken to see if things have spread or not. I have been given a cancer nurse who so far has been lovely but of course there is no treatment plan until these results are known.

  • Welcome, KO717, and my sincere condolences. My ILC was diagnosed in February, 2016. Mine was found by regular screening mammogram. I had bilateral mastectomy -- total mastectomy on the non-cancer side, and modified radical mastectomy with 13 axillary lymph nodes removed on the cancer side. About six weeks later I started on a daily pill, an Aromatase Inhibitor. Two and a half months after my cancer surgery, I had a Total Abdominal Hysterectomy with Bilateral Salpingo-Oophorectomy -- I had had troubles in that area over the years.

    The MRI is the most sensitive imaging for ILC. When mine finally decided to show itself in a mammogram, my tumor was about two and a half times the size indicated by mammogram and ultrasound.

    Waiting and wondering is indeed difficult. Once you have a treatment plan, though, you will move along through those steps. Whatever it takes -- You can do it!

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