27 year old lobular carcinoma

youngdogmumyoungdogmum Gold Coast Member Posts: 111
edited February 25 in Newly diagnosed
Hi there,
I’m 27 and based in Brisbane just now. 
12 days ago I was diagnosed with invasive lobular carcinoma. I don’t yet know lymph involvement but am guessing it’s likely (nothing showed on USS or palpable however.)
My surgeon has recommended a full lymph clearance.
Is there anyone else out there this young with lobular? 

My biggest fear is leaving my husband behind without any children, what if my illness causes him to miss his chance of having kids with someone else one day? 

Unfortunately I’m a nurse so know a bit too much about what I’m about to go through. 
I have a mastectomy in 3 days and axillary clearance. 

Trying to remain positive.
At what point did you ladies meet your oncologist? I’m not meeting them until next week when the final pathology/sizing etc is back after surgery and they’ve had an MDT to decide my treatment plan. Is this normal? I’m public.
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Comments

  • kmakmkmakm MelbourneMember Posts: 6,838
    edited February 24
    Hello and welcome. I'm sorry you joined us, but I hope you find it as helpful and supportive as I have.

    There is a young women's group here which you might like to check out.

    https://onlinenetwork.bcna.org.au/group/10-young-women

    I didn't see my oncologist until after my wide local excision and a re-excision for margins, and all the pathology was in. Treatment options can change after surgery as the mammograms and ultrasounds often don't accurately reflect the size of the tumour. So yes, it's normal as far as I'm aware, to see your oncologist at that point.

    We've got quite a few medical trained patients here, I'm sure they'll be along soon to advise on how manage BC in your position.

    Make sure you speak to your oncologist about fertility issues at your first appointment. I'm not sure what you mean about leaving your husband unable to have kids with someone else. Are you able to clarify?

    I know it's hard, and we all do it, but try to not jump too far ahead. Don't cross any bridges until you come to them. Predictive grief is not helpful! One step at a time lovely. Big hug, K
  • youngdogmumyoungdogmum Gold Coast Member Posts: 111
    Hi Kmakm thanks for the reply :)

    Ive been trying to find that link for the group thanks for sharing.

    I should have added that my body and bone scans were clear 😃 

    As much as I want to not jump ahead, I am far too aware of the possibility of recurrence etc and as we don’t have any kids yet, I’m not sure we will be able to.
    I meet again today with fertility to discuss harvesting eggs and freezing embryos, however I’m hearing that longer term tamoxifen is showing better results in young women (10 years over 5 years) 
    This is of course by my own readings and not from an oncologist, but I suppose I’m scared if I take longer term tamoxifen and we don’t have a baby, then something happens later to myself and he hasn’t had any children. Is that awful of me to take a medicine longer to prolong my life but not give him the opportunity of children? 
    Oh these dark morbid thoughts! Time for a play with my dog I think to cheer me up. 

    Thanks for again for replying ❤️
  • kmakmkmakm MelbourneMember Posts: 6,838
    See what the fertility experts say! There are people out there who've had kids whilst managing hormone therapy. Sometimes the percentages the doctors talk about are tiny. And there are also surrogates who could carry your baby for you.

    Have you discussed these fears with your husband? K xox
  • arpiearpie Mid North Coast, NSWMember Posts: 2,509
    Hi @youngdogmum ... Sorry to see you here, but the wealth of information from those who’ve gone before you may help to allay some of your fears.   

    Great that your body and bone scans are clear.  That’s a good start.

    I was diagnosed with ILC in Jan ‘18 and had breast conserving surgery/lumpectomy, dodged the chemo bullet and had 4 weeks radiation and now on hormone tablets.   My pathology was good.  Clear margins and not in lymph nodes and I was back doing basically everything I love doing within a month of surgery, tho had to be wary of road bumps for some months (holding my boob to lessen the ‘bounce’)

    Try not to 2nd guess everything before you see the experts ... Dr Google will just muck with your head.  Everyone’s situation is totally different and what worked for one may not work for another.  I didn’t see my Med oncologist til after I had my radiation .... tho my surgeon and his team had advised me early on that I would be going on to hormone tablets to lessen the chance of recurrence ..... but I was already menopausal. 

    Take one day at a time, get over the surgery first, the rest will slot in place over time.   It is a scarey ride, but we are here to help you thru it.

    keep talking with your husband as he will be just as scared as you are ....., I hope you have supportive family and friends to help you out after the surgery as you will have some restrictions in movement initially.  

    Take me care and all the best with your surgery and pathology results.  Xxxx
  • SisterSister Adelaide Hills, SAMember Posts: 3,865
    Hi, Lunch is almost over so I'll be quick ... Check my profile for diagnosis and treatment for ILC.  Mine didn't show in the nodes until I had the first surgery with sentinel nodes taken.  Second surgery, I had the axillary dissection.
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,649
    edited February 25
    Yes, that's normal @youngdogmum. They need the path reports for the MDT to make recommendations. Depends where you are, but it seems likely you will be referred to an oncologist as soon as the results come in.

    My cancer was ILC too, but i was 43 when I was first diagnosed. It's interesting that you surgeon is recommending a full axillary clearance straight up.  I'm wondering if you are in a regional area where that procedure is more common as there is often no facilities for sentinel node surgery or if that is your surgeons usual approach or if they feel you are likely to have second level node involvement? It's worth asking about that as a full clearance can be problematic later and many surgeons try to avoid them unless it's absolutely necessary.

    Your concerns about fertility are absolutely valid, . Ask lots of questions. Mxx
  • youngdogmumyoungdogmum Gold Coast Member Posts: 111
    Hi Zoffiel,
    He explained the pros and cons and feels that given the size of the tumour on imaging and examination he would be shocked if there wasn’t multiple nodes involved. Due to the potential false-positive rates with sentinel, he said he feels probably better for my long term outlook to safely take them all now. He described it as an “old school approach” 😂 he is a professor after all haha! 
    Im in Brisbane and having surgery at a tertiary hospital so I don’t think its to do with lack of equipment etc..

    Quite isolated family wise which I know is going to be really hard. That was probably the first thing I got upset about, I thought how am I going to get through this just the two of us.
    my mum passed away 10 years ago (lung ca, nil family history of breast/ovarian at all)
    dad and I have a strange relationship. My sister is intellectually disabled and honestly won’t be much help at all.
    my brother is in Darwin and his wife is about to give birth to their first, as much as I’d love him here I need to let him enjoy this time as well.
    Hubbys family are all in Scotland, I’m hopeful they will visit.
    But I have some good friends around, as well as their Mums who were there with me through my Mums treatment and passing. Plus my dog I think she’s going to keep me smiling through this!!! 

    Thank you everyone again for your comments and what not.
    It is so nice to hear of so many women now on the other side of treatment. 
  • kezmusckezmusc Member Posts: 1,094
    HI @youngdogmum,

    Just wanted to say Hi and welcome to the forum.  Mine wasn't ILC so I cannot help in that respect. 

    However, I will jump in and agree with @Zoffiel regarding the axillary clearance.  I am sure you are aware It's a fairly invasive procedure with a number of risks and possible long term side effects and it generally isn't something surgeons like to do unless it's necessary.  

    I was 45 when I had this procedure along with lumpectomy but it was done because we knew there were lymph nodes involved from the beginning, so no choice.

    I would say I recovered very well from it all things considered and yes your age probably will help in that respect as well.   I did a ridiculous amount of exercise for both strength and making sure everything was draining well. There was minor cording at the beginning but that went quickly with exercise and physio and have been fortunate that I haven't had any trouble with lymphodema. The strength in that arm is as good as it ever was except with weight on it up high.

    In saying that though there are numb parts (shaving is still weird), super sensitive parts, it still pulls at full stretch, feels kind of oddly puffy at times and still tingles mildly when I use the lawn mower. That's after 2 and a bit years. As Zoffiel said, we don't want to scare you off but information is somewhat lacking at times unless you push the issues. 

    I guess it depends on how comfortable you are with what you have been told and how content you are going to be about having had that procedure if it all comes back clear ( which of course we want it to) and wasn't necessary...

    Trust your instincts and never be afraid to ask as many questions as you need to.

    Best of luck lovely.  Keep us updated with how you are going.  There is always plenty of support around.

    xoxoxoxox
  • kmakmkmakm MelbourneMember Posts: 6,838
    @Kiwi Angel might be able to shed some light on the experience of going through BC without family support.

    I have found with the exception of the practical support I received during chemo (and I run a household of seven, at the time 9 - 85 years of age), the best support I've received has been here. There's something about people who have walked this path before you that is tremendously tremendously helpful, practically and emotionally. K xox
  • SisterSister Adelaide Hills, SAMember Posts: 3,865
    I agree with the others.  The issues with the underarm are the most difficult part (physically) with the surgery so it pays to be pushy.  I have ongoing cording (I'd never heard of it before and my current GP has never heard of it but it affects many of us), have little sensation but odd pains, and worry a lot about the possibility of lymphoedema.  If you need it, you need it but it's not something to go into lightly.  And it's something you don't get told much about beforehand.  As @zoffiel says - you will deal with this the same way as you deal with any crisis where you are the centre of attention.  While I appreciated help, I didn't want to be crowded and I let some good friends deal with keeping people up to date until I got a blog sorted.
  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,874
    @youngdogmum it was just myself and hubby when I went through chemo. I was 44 when diagnosed and hubby was 41. We have no children and we had decided years earlier that wasn’t for us. Im glad that was one less thing to stress about when diagnosed. I really feel for you having to deal with the issues of fertility and children on top of everything else. 

    I lost my mum when I was 29 and we lost my father in law 7 years ago and then my father the year after. I’m an only child and my husband has one brother but we haven’t spoken to him or his wife since my father in law passed due to some issues we had. My mother in law has never been the most supportive or helpful as she has mental issues and due to something she did to me when I was diagnosed I haven’t spoken to her since last year. 

    Im lucky that I have the best husband and some great friends and work colleagues that supported me when I needed it. 

    I am very stubborn and being an only child I’m pretty much used to looking after myself and don’t like to put others out. 

    In in terms of support and knowledge this forum was another great support and I could not of got through it without everyone here. No one else knows what you are going through other than people who have done it too. 

    Huge hugs xoxox
  • youngdogmumyoungdogmum Gold Coast Member Posts: 111
    Hi all,
    I re-read my notes and I’m actually supposed to be having grade 1 and 2 clearance.
    Sorry for the confusion, I remember him initially saying total clearance. So much info in the last 10 days has gone into my brain 😬
    ive tried attaching my dog photo, hopefully it works!! She’s about to turn 2, Bonnie ❤️
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