Lobular breast cancer just diagnosed

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Cindi
Cindi Member Posts: 134
edited October 2023 in Newly 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.


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  • Aska
    Aska Member Posts: 70
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    Hi Cindi
    Well done for reaching out to this forum.  I found it a very hard but worthwhile step to take. 
    I was diagnosed with invasive lobular 1.8 cm and a 2nd 1.1 cm both in my left breast, estrogen and progesterone positive, herceptin negative. 
    I was in limbo land post biopsy as they weren't convinced of size.  Greater than 2cm I was going to have chemo before lumpectomy. I had a second biopsy  and contrast MRIs to confirm size etc. Proceeded with lumpectomy and removal of 3 sentinel lymph nodes.  My nodes were clear and margins on lumpectomy clear, although there was a second tumour that had gone undetected. 😳 luckily we got them both in one op.
    I then had 5 weeks of radiation and am now on tamoxifen for at least 5 years. This starves the cancer cells  if any, of estrogen so they can't survive. 
    Ask lots of questions.  Tap into your breadt care nurse.  What state are you? I'm in regional Vic but choose a surgeon in Melbourne.
    Take care xx
  • Julez1958
    Julez1958 Member Posts: 1,157
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    Hi @Cindi
    I had lobular cancer - only about 10 to 15 percent of breast cancers are lobular - most are ductal.
    It is often called the “ sneaky” cancer as it often does not show up on a mammogram.
     Also it  typically does not present as a neat round lump but as more of a spider web.
    I found a lump only 12 months after my last mammogram and it was so extensive I needed a mastectomy.
    I ultimately decided on a double mastectomy and DIEP flap reconstruction.
    Lobular is more likely to be hormone positive which gives extra treatment options.
    Everyone is slightly different in their circumstances and yet everyone on here “ gets it” in a way people who have never received a breast cancer diagnosis will.
    You will find this online community very supportive and informative .
    Take care.🌺
  • Tarma
    Tarma Member Posts: 73
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    Hi @Cindi 

    Just a big Hello and Welcome from me 😃

    Don't be frightened to post whatever questions you have,, I ask all sorts of silly things.. 
    These ladies are all truly wonderful ❤️ 

    Take care of you,, 

    T.

  • Daina-BCNA
    Daina-BCNA Administrator, Staff, Member, Moderator Posts: 35
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    Hi @Cindi

    I’m glad you made your way to the Online Network and I hope the links I sent you via email have helped in someway. It looks like you have already been warmly welcomed by @arpie, @Aska, @Julez1958 and @Tarma - who will all know exactly how you’re feeling. Please asked any questions and let us know how you go, otherwise please call the Helpline on 1800 500 258 and we would be happy to help you navigate this stressful and worrying time. Daina

  • Cindi
    Cindi Member Posts: 134
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    OH THANK YOU !! everyone for answering my questions and reaching out. :)  I'm sorry I didn't reply sooner but was confused how to navigate this forum, I'm in my 60's so not as great on the computer as the younger ones. Also not sure how to reply to individual posts.  I live in Sydney NSW and am seeing a specialist at The Mater Hospital. It seems like quite a while since I was diagnosed as I've had so many tests and appointments since then. Even though its only a couple weeks.  So , since I last posted, I have gone from wanting double breast mastectomy's and reconstruction to being talked into (by my specialist) that I don't need this as it just puts me at more unnecessarily risk? so I've relented and I go into hospital this coming Wednesday 4th Oct. to remove the 2 tumors and some lymph nodes. The day before I go in for  ultra sound directed injections of a dye? into cancers to see which lymph nodes they go to I think. Then after op a long weeks wait for results . It's definetely quite scary and overwhelming.
  • arpie
    arpie Member Posts: 7,736
    edited September 2023
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    All the best for your surgery next week @Cindi- it sounds similar to mine. ... try & keep yourself as busy as you can leading up to Tues/Wed - and also between the surgery & results - tho you'll be resting up a bit after the surgery - Netflix is good ;) 

    So ... NO heavy lifting til your surgeon says 'yes' (ie washing baskets/hanging out clothes, reaching into high or low cupboards ...) and initially, no driving.  Maybe cook up some meals that you can freeze, for easy meals after you get home.  Definitely get a small softish cushion to take with you to the hospital (mine is like 'half a cushion' shape - for the journey home, as any bump/gutter you go over will jar the surgery area (petrol station & your driveway can be a killer!)  I hugged my cushion all the way home.  I also used it at night for the first week, as my arm didn't like lying low on the bed ... it needed to be elevated a bit.  Take the pain killers regularly for those first few days/week - don't let the pain break thru.  Hopefully it won't be too

    If you want someone to be 'notified' in your reply, just whack '@' in front of their name as you type it - and their name should 'drop down' and just click on it.

    Start putting aside bits you need to take to hospital with you (check here for some suggestions: https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1)
    Specially - take EAR PLUGS & an EYE MASK, as hospitals are bright, noisy places & it is difficult to get a decent night's sleep!  Take your preferred TBags/coffee too, if you have a favourite! ;) 

    I was scared & a bit overwhelmed as I entered the hospital - but the relief I felt the next day, knowing the tumours had been removed, was just amazing!  I felt 'free' knowing it was GONE!

    take care and all the best xx

    If you keep updating this thread with how you are going even after the surgery, it can sort of be a 'diary' for you. ;) 


  • Cindi
    Cindi Member Posts: 134
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    Thank you so much for all the helpful feedback, I'm SO GLAD I found this forum. I will keep up dating. Now I'm going out to find suitable clothing and find a small cushion/pillow for the homeward journey after op, and cook up something to freeze, I'm not sure how long I'll be in there, I heard only ONE night! I hope I'm ok to cope after only one night then home. I'm pretty sure I wont get much help at home. Anyway I'm strong and determined, I'll get through :)
  • arpie
    arpie Member Posts: 7,736
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    Awesome!!  Yep, if a lumpectomy, just the one night is common ..... some even have day surgery & go home the same day!!!  

    You'll be fine xx
  • GinGin
    GinGin Member Posts: 135
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    Hi @Cindi
    do you have a breast care nurse yet? Give them a Call and they’ll give you an ‘u’ shape pillow to use under your arm. These breast care nurse at with McGrath Foundation and I’ve checked there are a number of them station at The Mater Hospital. For your convenience, the link to McGrath is and you can find their contact numbers.
    https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/

    the other things the breast care nurse can organise is free post surgery bras. They are very comfortable as these bras have front opening. You may find arm movements a little restricted post surgery if you have some lymph nodes removed, so front opening bras are useful.

    I had a lumpectomy and axillary clearance in Aug. I had to stay at the hospital for 3 nights and was only discharged when my drains was take out. hopefully yours will be smoother than mine.

    After your lumpectomy surgery, you’ll have to wait for the pathology reports which will advise if there was clear margins from the tumors. If there is, that’s the end of story 😊. However, if there isn’t clear margins, there may likely be another surgery (best to ask your surgeon).

    Please let me know if there’s anything else you like to know. happy to share my journey with you. 

    All the best with your surgery 
    xx
    Gin

  • arpie
    arpie Member Posts: 7,736
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    @Cindi and @GinGin @Tarma ..... you can also contact BCNA's helpline on 1800 500 258 to request the Berlei Care Kit - or get your Breast Care Nurse to do it on your behalf .....

    My Care Kit - New sizes available


    Berlei has introduced 10 new post-surgery bra sizes into the My Care Kit range. These include 16B, 20C, 22C, 22D, 24D, 10DD, 22DD, 24DD, *12E and 20E. (*Please note 12E will arrival in late April).

    We are also pleased to let you know that new stock will have an extended hook and eye clasp along the back of the bra to provide additional length. We hope that changes to the clasp and an increased size range will provide an alternative to the current bra extenders.

    The My Care Kit contains a Berlei bra that's been specifically designed for the immediate recovery period, soft form inserts and information.

    If you haven't accessed the My Care Kit before and you have recently had breast cancer surgery; you can request the My Care Kit through your breast care nurse, or by contacting BCNA's Helpline on 1800 500 258.


  • Cindi
    Cindi Member Posts: 134
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    @Cindi

    Thank you Arpie, and Gin.
     Yes I would like to hear about your journey Gin, I really don't like the "unknown" and am the type of person who likes to get details about what to expect.
    I'm quite fit ( except I've lost at least 5 kilos in the last about 4 months which isn't what I needed) and very determined to fight this, I have a lot of hope.
    However the lymph node wait will be hard.
    Where abouts are you located? I'm in the upper North Shore of Sydney, it would be nice if there was anyone else around this area, but happy to communicate here.
     I did speak to a special nurse on the phone at some stage, but at that time I couldn't think of many questions ( I did later of course) so much was happening so fast.
    The care kit sounds helpful. I'm sure they'll sort all that out for me.
  • PrisMay1
    PrisMay1 Member Posts: 70
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    Sorry to hear you’ve joined our exclusive club! I’ve had a lumpectomy twice in the same breast. 2007 for a ducal cancer and this year for a lobular cancer. The best advice I can give is get to Kmart and buy some post surgery bras. They are a crop type wireless bra with a zip up the front and $20 for 2. I got my usual size for day and sized up for night. You should get a Berlie post op bra but I find mine quite tight when I swell up. I have some lymphoedema as I’ve had a number of lymph nodes removed and radiation for my first cancer. 
    You should get back to your usual routine in a week or so but watch the heavy lifting and reaching. 
    Once you get the results following surgery the rest of your journey will start to get mapped out. All depends on what type of cancer you have and if there’s any spread. Don’t feel that you should have had a mastectomy - there’s lots of other options these days. Best of luck. 
  • Cindi
    Cindi Member Posts: 134
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    Thanks so much, PrisMay1, that was very helpful, but do I need to wear a bra to bed?!
     Why is that? does it protect the breasts?
    Mine are so small already I probably wont have much left after surgery.
    Also my left breast is still so bruised from the 5 biopsies done a week ago all in the same spot ( trying to get the right area as so difficult to find exactly) I'm worried the dye procedure I have to have tomorrow will be difficult for them and then the next day, will my surgeon have problems with the blackened skin?
    It's all going around in my head and I'm barely sleeping, but guess I'm not alone there.
    Hard also because it's a long weekend here in NSW so I feel I can't contact my cancer nurse to ask her anything.
    Anyway , soon it'll be all over and the wait will be on.