Metaplastic BC

Options
Gina4h
Gina4h Member Posts: 98
edited April 2015 in Just Diagnosed

Hi, anyone out there with metaplastic BC? Just found out this morning that that is what I have and the BS is moving very quickly because she said it's very rare and usually aggressive. Blood tests and x-rays today bone scan tomorrow waiting to hear about when the abdominal ultrasound is booked. Oncologist as soon as the test results back - every requisition marked urgent. Very scary

· Share on FacebookShare on Twitter

Comments

  • wrenn
    wrenn Member Posts: 2,707
    edited April 2015

    I do. I had BMX and one session of chemo. It was cut off after the first dose due to complications. I have been fine since then (summer of 2013). I saw my oncologist last week and everything looked good. I go back in 6 months. Many people do ok with it. Try not to worry too much (easier said than done....I still worry of course). Take care of yourself. If you do a search on the site there is a thread for metaplastic I think.

    · Share on FacebookShare on Twitter
  • Gina4h
    Gina4h Member Posts: 98
    edited April 2015

    Hi Wrenn - thank you, that makes me feel better.

    · Share on FacebookShare on Twitter
  • lrr4993
    lrr4993 Member Posts: 937
    edited April 2015

    My tumor was metaplastic. It was incredibly aggressive - highest scores in all the aggressiveness measures. But here I am almost five years later and doing well.

    · Share on FacebookShare on Twitter
  • slv58
    slv58 Member Posts: 1,216
    edited April 2015

    I've just been dx with metaplastic also. Mine is a local recurrence which was found by my LX scar. I meet with my Onc on the 22 to get all the details and am not sure if my first tnbc tumour was metaplastic. I will be doing chemo again and I believe it will be cisplatin and Gemcitabine this time.

    Thank you for encouraging words Wrenn and Irr4993, I've been an emotional mess since finding out.

    Ginah4h there is a Facebook group just for metaplastic women. I just joined and find it supportive, there are over 500 members, so we are not alone!

    Hugs, Shari

    · Share on FacebookShare on Twitter
  • Gina4h
    Gina4h Member Posts: 98
    edited April 2015

    Hi Lisa - thanks, it's nice to hear from someone who has made it through.

    Thanks for the hugs Sheri - much needed.

    Did either of you have it in lymph nodes too? Mine was not there in January and now I have a 3.8 cm breast lump and 2.5 cm lymph node lump. It is the speed of growth that makes it so scary I think.

    Also, my BS is saying chemo first, then surgery, then radiation if it has not metastasized. She wouldn't discuss treatment if it has. This is even scarier.

    · Share on FacebookShare on Twitter
  • JenniferCanada
    JenniferCanada Member Posts: 21
    edited April 2015

    I'm afraid I'm not much help. Going for my diagnostic u/s tomorrow after finding 2 lumps. Found a large hard mass in the arm pit of the same breast with the lumps this morning. Thinking of you and hoping for the best results possible!

    · Share on FacebookShare on Twitter
  • slv58
    slv58 Member Posts: 1,216
    edited April 2015

    Jennifer, welcome and sorry about your reason to find this site- hoping your tests reveal nothing. Where are you going for your U.S.? Word of advice if I may, you can try asking the technician if anything suspicious shows up if they could do a biopsy right there and then- explain your very nervous and can't possibly wait for another appointment. Hopefully you won't need to but sometimes they will squeeze you in and biopsy right away if needed and that saves you having to wait yet again.

    Big hugs and thinking positive thoughts your way

    Shari

    · Share on FacebookShare on Twitter
  • Gina4h
    Gina4h Member Posts: 98
    edited April 2015

    Jennifer, I feel for you:(

    My advice is find something anything to laugh at. It is the only way I am making it through all of these tests.


    · Share on FacebookShare on Twitter
  • slv58
    slv58 Member Posts: 1,216
    edited April 2015

    Gina, thinking of you, how are you doing?

    · Share on FacebookShare on Twitter
  • placid44
    placid44 Member Posts: 497
    edited April 2015

    My friend who is Metaplastic stage 3c had consults with an oncologist at MD Anderson who specializes in metaplastic. She developed the treatment plan, which includes specific drugs plus a clinical trial. A different onc near where my friend lives is implementing the treatment plan. Also here are a couple of links

    http://www.metaplasticbc.com/frequently-asked-ques...

    https://www.facebook.com/MetaplasticBreastCancer


    · Share on FacebookShare on Twitter
  • Gina4h
    Gina4h Member Posts: 98
    edited April 2015

    slv58 Thank you for thinking of me. It's funny, got through the bone scan, the phone calls about scheduling tests... amd just broke down about an hour ago.

    I couldn't stop crying. Then my brother sent me "Asparagus actually cures Aspergers syndrome" because I had asked everyone NOT to send stupid cancer cures. I laughed and now I'm okay. Ultrasound Friday and chemo as early as next week. Good thing I got a super short hair cut last week just before my diagnosis. It will hardly be noticeable if my hair falls out:)

    · Share on FacebookShare on Twitter
  • Tracyj14
    Tracyj14 Member Posts: 1
    edited April 2015

    I was diagnosed metaplastic spindle type last week. Completely out of the blue and cried literally all weekend. I have 2 elementary schoolers... I had my lumpectomy 2 wks ago (pathology report was the diagnosis); triple negative. The tumor board at the hospital is studying my case next week.

    I know exactly how you feel - you're not alone. We can do this. I have to believe that this s a bump in the road that we will get through. Other piece of advice: Ambien. The world was much clearer after I slept for more than two hours.

    · Share on FacebookShare on Twitter
  • slv58
    slv58 Member Posts: 1,216
    edited April 2015

    I've been having my moments as well. Today my best friend took me out shopping. I bought some new pjs and some 'granny panties ' because mine sit right on my diep scar. I was happy. It's like if I buy things, I'll be around to use them. I guess this is denial. It's so hard not to think negative. I just want someone to tell me that there is hope- even though this is a recurrence. Tomorrow I go for pre chemo bloodwork and vein assessment. I meet with my MO on the 22nd to get all the facts.

    I've been feeling light headed lately and wonder....

    Tracy, my heart goes out to you, you shouldn't have to worry with two young ones.

    I think we will be a small group on here, but I can feel our strength combine! Nice to know we're not alone.

    Hugs, Shari

    · Share on FacebookShare on Twitter
  • wrenn
    wrenn Member Posts: 2,707
    edited April 2015

    Wishing you the best slv58. You deserve it. You are so supportive around here. Best thoughts to everyone dealing with this beast.

    · Share on FacebookShare on Twitter
  • mike3121
    mike3121 Member Posts: 410
    edited April 2015

    The management doesn't like husbands, etc posting on the "for BC patients only" forums so I'll make this short. My wife has metaplastic keratinized squamous cell carcinoma in lymph nodes. Also estrogen pos BC. Anyway here is a link to a chart that, for me anyway, explained a lot. Just through with AC and on to rads. She hates forums, bad experience with them.

    Page 5

    Mike W.

    http://www.benaroberts.com/2015/04/metaplastic-breast-cancer-and-how-to-survive-it.html

    · Share on FacebookShare on Twitter
  • Gina4h
    Gina4h Member Posts: 98
    edited April 2015

    Tracyj14 - so sad for you. I have this new philosophy - if I want to do it and it helps me I do it. So use ambien as needed. And allow yourself to laugh and smile at your little ones. My 3 year old granddaughter lights up my whole day, so my daughter is bringing her in from out of town 3 days this week.


    slv58 - going shopping as soon as I can find the energy. I think your are right about it affirming a future. I hadn't thought of it, but maybe that's why I keep insisting I need a new comfortable couch. That is something you buy for the long term.

    · Share on FacebookShare on Twitter
  • wrenn
    wrenn Member Posts: 2,707
    edited April 2015

    I go back and forth with shopping. I will buy something long term but most of the time I am thinking that I shouldn't waste money on something I won't get to use long. I am going to start focusing on getting things that last. :-) I too want a new comfy couch.

    · Share on FacebookShare on Twitter
  • Gina4h
    Gina4h Member Posts: 98
    edited April 2015

    My sister is trying to convince me to take her old couch, cause they are getting a new one and "you shouldn't be spending money right now" Why not? I don't have much, but I also never spend it. I'm one of those people who washes out and reuses plastic bags:)


    · Share on FacebookShare on Twitter
  • slv58
    slv58 Member Posts: 1,216
    edited April 2015

    Thank you Wrenn, that was so generous to say. I hope you are doing well! I just got back from hospital, blood work and 'vein assessment' getting my picc line next wed and then my first chemo. I now meet with my MO on Tuesday to find out everything. Not looking forward to this. I want to pretend everything is normal, waking up every morning it's the first thing on my mind and fora second or two I think it's a bad dream.

    · Share on FacebookShare on Twitter
  • Gina4h
    Gina4h Member Posts: 98
    edited April 2015

    Hi slv58. Are you in TO by any chance? I'm thinking of switching my chemo to TO so that I can stay at my daughter's house. St Michael's hospital is an easy street car trip away and her husband could drive me most of the time. I don't know anything about the breast cancer centre at St. Michaels though.

    · Share on FacebookShare on Twitter
  • slv58
    slv58 Member Posts: 1,216
    edited April 2015

    Gina, this is totally my own opinion, so please keep this in mind. I don't think St. Mikes is "known" as a breast cancer hospital as much as Princess Margaret or Sunnybrook. I know they are acclaimed as a great neurological hospital, although I have had a negative experience with that.

    If you are considering reconstruction, do some research on diep- they use your own tummy fat to construct a breast attaching the blood vessels so that there isn't rejection (being completely your own tissue) and is warm and soft. There are few really good neuro vascular plastic surgeons doing this. My surgeon is very well known as one of the best in Canada, Dr. Lipa out of Sunnybrook. It was even explaining that Women's College does not do diep reconstruction because they don't have the surgeon expertise.

    If you are planning on staying at your daughters and she is downtown, try calling cancer canada and seeing about volunteer drivers- I have used them in the past and it's amazing the 'goodness' that these people share! If you want any specifics please pm me.

    Now remember, this is MY opinion ;-)

    · Share on FacebookShare on Twitter
  • Gina4h
    Gina4h Member Posts: 98
    edited April 2015

    Slv58 I am not considering a reconstruction. I have problems with healing. I just open up again when the stitches come out. My plastic surgeon who has patched me up in the past has retired. I'm going for the least amount of surgery possible. I would return to Juravinsky for surgery anyway. I really like my BS Nicole Hodgson

    · Share on FacebookShare on Twitter
  • Gina4h
    Gina4h Member Posts: 98
    edited April 2015

    slv58 - thank you for your suggestion about volunteer drivers. I will definitely look into that. I also joined the facebook group - thank you!

    · Share on FacebookShare on Twitter

Categories