Just diagnosed with Invasive Mucinous Carcinoma

6ftred6ftred Member Posts: 3 New Member
I was diagnosed yesterday with invasive mucinous carcinoma.  I'm booked in for a lumpectomy and removal of sentinel lymph nodes on the 20th February and the regular CT scans and bone scan on 1st Feb.  Surgeon has said that due to my age (45) oncologist may likely recommend chemo, radiation or hormone therapy depending on receptors found. 

I honestly feel like I just enrolled in a new unit at uni with all this new knowledge that I am researching and learning.  
I haven't found many forums that talk about this type of cancer, less common.  Would love to hear from others with same diagnosis.

So many thoughts to navigate.  I toggle between doing ok and coping and then next minute I'm a mess.  I'm sure this is normal.  I have such dreaded thoughts about my future and ideas of planning a will and leaving all the passwords for my kids but then I collect myself and try to be positive and strong. 
I find myself just staring vacantly while my thoughts are racing and my family don't really know what to say, honestly neither do I sometimes and so I say nothing. 

Looking forward to connecting here and leaning on the support of amazing strong women and getting a well needed laugh occaissionally xx.  

Comments

  • iserbrowniserbrown Regional VictoriaMember Posts: 3,834
    Welcome to the forum!  Best advice be wary of Dr Google 

    Here's a couple of links

    https://onlinenetwork.bcna.org.au/discussion/19374/invasive-micropapillary-carcinoma

    https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/

    @soldiercrab has links to some great resources as well as

    Best wishes

  • kmakmkmakm MelbourneMember Posts: 7,655
    Hello @6ftred. Welcome to the forum. I'm sorry you've found yourself here. I hope you find it as helpful and supportive as I have. It's a great hive mind, and good for a laugh, a vent and a good whinge!

    Everything you're feeling, experiencing and expressing is entirely normal. Everyone here has been there, we get it. It will get better in many ways once the pathology results from your surgery are known and you have a treatment plan. Until then you have to take some deep breaths, distract yourself, and try really hard not to cross bridges until you come to them. Easier said than done I know! Focus on today, even solely on the next hour if needs be, and you'll get there.

    Yes, the learning curve is a vertical straight line. Fire away with your questions. There's almost always someone here who knows the answers. And if they don't, they know someone who does.

    Use the search bar to hunt for 'mucinous' and you might find someone similar. I had a mucinous cyst 19 years ago, but it wasn't malignant and someone else altogether.

    Hang in there, you're not alone. Big hug, K xox
  • kmakmkmakm MelbourneMember Posts: 7,655
  • Lisa1407Lisa1407 Elwood, VictoriaMember Posts: 83
    Hi 6ftred
    Mucinous carcinoma's tend to be less aggressive than non-mucinous carcinoma's. So that is potentially good news for you (although it probably still means chemo and radiotherapy).

    You will need to know more about the cancer's pathology and markers which will happen when they take the lump and process it in the pathology lab (eg is it hormone positive or negative, is it HER positive or negative, is it ductal or lobular etc) before you can work out likely prognosis.

    I had a mucinous carcinoma which initially indicated a good prognosis. However, the tumour had a different pathology that is not normally found with mucinous carcinoma's so it was a bit strange. Anyhow, my cancer had spread to my bone - aligning with the more agressive pathology and not the mucinous pathology! Unfortunately, medically I always seem to be an anomaly!

    I hope your lumpectomy goes well and the pathology shows a less agressive tumour as indicated thus far.

    Cheers
    Lisa XXX
  • 6ftred6ftred Member Posts: 3 New Member
    thanks @iserbrown  I have definiately been stearing clear of Dr Google.  www.breastcancer.org and www.beyondtheshock.org are great sites.
    I will look at those you recommended too xx
  • 6ftred6ftred Member Posts: 3 New Member

    Thanks @kmakm and @Lisa1407 for your words of encouragement.  Control is a difficult one to give up but I pray that I found this early enough and the surgeons are skilled.  
    One question, the surgeon was talking about the quadrant that would be removed during the lumpectomy.  My brain says a quadrant means one quarter.  Should I be asking about options of reconstructive or does this type of surgery not really require this?
  • CathyMacCathyMac Canberra, ACTMember Posts: 65
    @6ftred I'm sorry you've had to join us here. This site has been my saviour since my diagnosis in November. It's such a tumultuous time and there is so much to get your head around. Hang in there and just take it one day at a time. My biopsies showed I had high grade DCIS and invasive mucinous carcinoma. I had an MRI pre surgery to determine the extent and size of the cancer so my surgeon could map surgery for a lumpectomy. I ended up having a mastectomy as it was a little larger than the other imaging showed and I wanted to know it was properly gone. 
    We are all here to help you through this. Just shout out!
    Sending you cyber hugs❤️
  • kmakmkmakm MelbourneMember Posts: 7,655
    Lumpectomies don't usually require reconstruction, though if you are very small breasted they may. I had a lumpectomy and then re-excision for margins. I had big boobs and I could see that the right boob sat a tiny bit higher than the left, but geeze, no one would have noticed unless I was standing very still and naked!

    The surgeon will only take away the cancer. Often it is larger than appears on the mammogram, and sometimes that can change the course of treatment from lumpectomy to mastectomy. This will become clear after your first, and hopefully, only surgery.

    With BC it always pays to ask about reconstruction. If you go public there are waiting lists of various lengths, though not if you have it done in the same procedure as the mastectomy. If you go private you avoid the waiting but can be stung for huge sums of money. Ask early so you have time to think.  K xox
  • arpiearpie Mid North Coast, NSWMember Posts: 3,209
    @6ftred - How well I remember the 'vacant staring' - looking but not seeing .... I did that a lot after my surgery when I was back home & doing the shopping (home chores never cease!)  I was lucky that my GP was there at the time & stopped me!  I had 1/2hr free consultation in the middle of Aldi's!!  LOL   

    It is a roller coaster ride, at best .... lots of highs & lots of lows, but we can ride them out.  If you have a 'moment' - jump on here & ask ANY question that springs to mind.   We have some inspirational posts as well as downright funny posts ..... it is not ALL serious here!

    Where abouts are you (City/town) - we may well have members who can point you towards excellent resources that may be of help to you xxx

    All the best with your surgery in Feb & pathology reports, where you'll get your plan. In the mean time - keep yourself busy - doing things you love & normally do.  Don't use Dr Google - everyone is unique in their diagnosis.  Tell those who you will believe be supportive of you and the family. You don't have to tell EVERYONE!  I've only just told some (including family members) 12 months after I've had my surgery!   I kept everyone informed with a 'group' email (some set up blogs) - letting them know that I may not get back to all the replies.  Just do what feels right for you xx

    Take care xx
  • kitkatbkitkatb Member Posts: 441
    Yep  know the vacant stare well.  @arpie
  • kmakmkmakm MelbourneMember Posts: 7,655
    Ditto
  • SisterSister Adelaide Hills, SAMember Posts: 4,430
    I think most of us remember that awful time when just getting through the day is all you can do as your world feels like it is collapsing around you.

    Welcome @6ftred.

    I haven't had reconstruction as my surgeon wouldn't consider it for at least 12 months after (and I don't know yet if I'll go down that path).  However, definitely do ask.  In fact, write down any questions you have before your next appointment so that you remember.  I can't answer your question about quadrant as mine never used that term.
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