Invasive Metaplastic Carcinoma

HD4873
HD4873 Member Posts: 6
edited March 2019 in Newly diagnosed

I was diagnosed with an Invasive Metaplastic TNBC in Dec
2018, and had wide local excision & SNB performed January, with nodes clear
and clear margins (though only just, on one side).  Currently just had my 2nd chemo
round (3-weekly TC x4), with 5 weeks radiotherapy to follow. Chemo has been relatively
kind to me thus far, with only a minor urinary inflammation and very mild dose
of shingles (which delayed 2nd round by a week) to deal with, apart from just not feeling up to par.  Though not having to worry about juggling work
commitments or children at home, plus the gentle pampering of my husband, certainly
helped me along.

Being a metaplastic lesion, rather than lobular or
ductal, the pathology report did not grade it. 
The medical oncologist, after further consulting with the pathologist,
has set a regime based on ‘standard’ treatment of Stage IIB Grade III.  Whilst in general I agree that ‘Dr Google’ can
be a big mistake, in this case I have been able to get more ‘useful’
information there, than from my medical team, as there is not a lot of local experiential
data available.

Just wondering whether there are any others here who are
able to offer any experiences with similar lesions – good, bad or
indifferent.  I have a personal
preference for having as much information as possible, so I can plan how best
to cope with a harsher outcome, and which also means I’ve had a great win when
it really doesn't turn out to be that bad.

Comments

  • Sister
    Sister Member Posts: 4,960
    I can't help with any information about this @HD4873 as mine was lobular but do want to say "welcome".  It helps to know what others have experienced so I hope you get some responses from this.  If not, it may be worth looking at the UK or US forums - greater population base.  I haven't heard of metaplastic so I'm not sure how unusual it is.
  • youngdogmum
    youngdogmum Member Posts: 250
    Good morning,

    Firstly, sorry to hear of your diagnosis. I have a more common type (lobular) but am a rare person under 30 with that specific type. It’s been very difficult to find other women in my age range with this type (I still actually haven’t found anyone this young currently in Australia getting treatment with my type).

    Although I can’t relate to how unusual yours is, I can relate to not knowing if treatment will be effective. My oncologists are doing a similar thing to yours and treating me with protocols they know work for other women with more common breast cancers but haven’t been studied that much in someone my age with this type. 

    I did a quick look on the web and found a journal article that said radiation seems to help your type a lot, so that’s great you’re having 5 weeks of it soon. 

    I hope we can all be helpful in one way or another. 
    Take care xx 
  • kmakm
    kmakm Member Posts: 7,974
    My web search says you are are in a 1% category! And like @youngdogmum I also saw that radiation therapy was helpful. Ask your oncologist why they're giving you TC (I had that). I was, and am, a relentless question asker of my doctors so I feel ya sista! Welcome to the forum and I hope you find someone else, even if they're not in Australia, who's metaplastic. Big hug, K xox
  • HD4873
    HD4873 Member Posts: 6

    Thanks @Sister, @youngdogmum and @kmakm  for the welcome and
    kind thoughts.

    I am more into the <0.1% category, once the actual
    make-up of the tumour is taken into consideration.  Invasive metaplasia carcinoma with
    mesenchymal differentiation (30% poorly differentiated squamous cell carcinoma,
    70% fibromatosis-like metaplastic carcinoma).

    Outlook appears to be mixed, lower than standard odds in
    the short term, but about par in the longer term.  Sometimes chemo-resistant (but still worth
    the effort in my opinion, in case it is not), and appears to have a tendency to
    prefer the blood-path rather than the lymph-path to ‘get around’.  Some studies indicate a propensity for local
    recurrences rather than metastatic, but some of the newer data does seem to be showing
    up a higher metastatic incidence.  But
    the sample sizes are really too small to determine any reliable statistics to
    work with.

    I hadn’t yet directly quizzed the oncologist regarding
    the TC choice, but it may be the case (from online searches) that this is
    potentially more effective for the cellular mix they’re dealing with.  One positive - after only the first round, I now have much smoother skin on my face, neck, arms and legs.  Still have the ‘age spots’ but most of the
    raised scaly bits have smoothed out. There has to be some up-side with what our
    bodies are going through  :)

  • kmakm
    kmakm Member Posts: 7,974
    TC did wonders for my skin as well! Extraordinary.
  • SapphireGem
    SapphireGem Member Posts: 2
    Hi. Just popped in to introduce myself. 
    I was diagnosed with Metaplastic carcinoma on April 1st..no joke! My 65th Birthday was April 2nd. Great! NOT!!! 
    Im not familiar with medical term abbreviations I see used in posts, so I’ll just use old fashion ‘plain speak’.
    The tumour 3cm at 1st scan, was removed along with sentinel lymph nodes. I think additional surgery is called ‘reduction’ or ‘lift’.  So far so good.  Im managing the aftermath Ok, perhaps because I’ve been down a similar path with colon cancer 10 years ago. That doesn’t mean I’m not frightened of the results of pending pathology report. My 1st cancer was detected early & wasn’t life threatening. I had bowel reconstruction and 6 months voluntary chemo. I really thought I beat cancer forever. Obviously not. 
    Im wrestling with having to do chemo again...IF I have to. I quit smoking a year ago to get toxins out of my body! I wish there was a healthier, safer option for all of us....similar to practises used in Eastern medicine. I’d stick out both arms for a Vitamin C injections, and take my coffee  black without complaint, if it meant getting those demon cells out of EVERY nook and cranny via my backdoor. I’d gladly lend my body to be a pin cushion for acupuncture, or be subjected to polar bear baths rather than chemo or radiation, if I had those options under Medicare. A girl can dream. 
    Dont get me wrong, I’m grateful for any treatment(s) available under our medical system. I feel for those who have to pay for every step out of pocket,  or high cost insurance. 
    I’m grateful too for websites like this, where I can access information, share, vent, learn, find new hope, support, friends. 
    I’ve support from distant family and friends, however 
    no (physically) close friends to share this with, other than my housemate, an older man. 
    Just knowing of anyone on the Sapphire Coast NSW, I’d feel less alone. 
  • SoldierCrab
    SoldierCrab Member Posts: 3,445
    hi SapphireGem sorry to see you have joined us ... I am going to make you a new discussion with your information above as then you will get replies to your post about your questions. 

    Soldiercrab

  • AllyJay
    AllyJay Member Posts: 943
    Hi there @SapphireGem, sorry you're back on the cancer train, this time with us fellow passengers for company. I think that having beaten one type of cancer would mean that another kind wouldn't pitch up later is not necessarily so. A bit like saying that you'd beaten infected tonsils with antibiotics ten years ago, and now you have an infected toe and need antibiotics again. Why??? I thought I'd beaten all forms of infection the first time around? I've used this analogy before, that cancer is a bit like small businesses. To say that all small businesses are the same, require the same sorts of staff and training, the same types of stock and equipment and seek the same demographic of customers, is not true. A doggy parlour and a garden service are both small businesses but are totally different. Bowel cancer and breast cancer are both cancers, but are completely different. It sucks that you've been hit twice by this cancer bus, but as you've said, you've dealt with it and won once before, and here you are again, preparing to take on the bastard yet again. Hopefully, once you have a treatment plan sorted, and get started, you will feel more in control and positive about this horrible situation. sending a big cyber hug ((( )))...Ally.
  • kmakm
    kmakm Member Posts: 7,974
    edited April 2019
    I remember hopefully asking my breast surgeon if my chemo would be killing any other cancers lurking in my body. No was the answer of course.

    Welcome to the forum @SapphireGem. Sending you a big virtual hug. Not much use in this shitfest, but know that we're all here for you. Hang in there, K xox

    PS You have the same birthday as my husband.  :)
  • SapphireGem
    SapphireGem Member Posts: 2
    Thanks 😁....your hubby must be a cool dude 😉
  • kmakm
    kmakm Member Posts: 7,974
    @SapphireGem The coolest! Actually he's an amazing man. He's taken on raising two children that he's not related to (at considerable cost to himself, physical, mental and financial), works a huge job and still makes me laugh after 23 years. He's a keeper! K xox