ladies in their 20s with mets

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MaryK87
MaryK87 Member Posts: 53
edited September 2016 in Young With Breast Cancer

some nice ladies on this site guided me to find some support in this forum so i am here :). here is my story;

i was diagnosed with stage 2A node negative TNBC in 6/13, finished treatment 2/14 and declared cancer free by my oncologist. after spending on year fearing recurrence i was finally getting back to normal when diagnosed with stage iv liver/lungs/bones mets in February this year. shocked and devastated because i had no symptoms. been through 2 chemos since then and feeling weak and off most of the time. anyone else with the same diagnosis and doing well? or at least had long term response to chemo. i am fighting hard but feel alone as a young with the type of disease that mostly hit older women.

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  • 123JustMe
    123JustMe Member Posts: 385
    edited May 2016

    Hi MaryK,

    I am sorry you are going through what you are going through but hopefully others with more experience will be along shortly


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  • cajunqueen15
    cajunqueen15 Member Posts: 794
    edited March 2016

    I am so angry women in their 20s are dealing with mets! No, no, no!!!! Sending you big hugs and prayers up tonight.

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  • MaryK87
    MaryK87 Member Posts: 53
    edited March 2016

    Thank you cajunqueen! I definitely need these hugs and prayers. being young and TNBC makes me feel alone as I don't see more women in their 20s with TNBC and mets.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2016

    I'm not TN and I'm no longer in my 20s, but I was originally diagnosed at 28 and got the brain mets diagnosis at 30. It affects every aspect of our lives so much more than with older women - even others still considered young, i.e. Those in their late 30s/early 40s. We have to navigate newish relationships and careers, be the first of our peer group to encounter a serious health crisis and figure out whether it's possible or advisable to even think about having children

    The Triple Negative Breast Cancer Foundation has a forum specifically for TNBC. I'm sure you will find other young women with TN mets there as this type of cancer unfortunately seems to affect the youngest of the young.


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  • MaryK87
    MaryK87 Member Posts: 53
    edited March 2016

    hi bad at user name

    someone told me about you when I joined this site a few weeks before. glad I found you. i was 26 at my first diagnosis. with NO family history of any type of cancer. you are absolutely right that it effects us much more than older ladies. i have dealt with much more than a physical battle all through my cancer treatment and 2 years of survival. i pray that no other girl ever suffer like we have suffered and still suffering.

    big hugs and love

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited April 2016

    I am looking for Triple Positive Stage IV ladies that tried Ibrance (that is being given officially to HER2-), anyway I help my daughter she is just now 31, stage IV for like 3 yrs, her HER2 status changed after biopsy was done bcs her mets were so aggressive. Mets to the bones. MaryK I saw your post there. It's good you started this, maybe you will get more hits.

    Just so you know, she had just had a baby, and told Gyno that she felt quite a large lump in her breast, he told her it's nothing, she is TOO young it should be serious. Refused to give her prescription for Mamo, saying it was not necessary. Well, we paid out of pocket, went to a private radiologist, and the rest is history. Lumpectomy was done the same week, and she started Rads right after. Yep, and this is here in such a sophisticated country.

    MaryK hugs and you could always check in to the bones thread also, we try to help as much as possible. Do you have close relations support?

    Bad as User I see you are also triple Positive. I was trying to post a new thread for triple pos. stage IV, but I could not find it yet. Also, Dani's oncologist decided to put her on Ibrance/Letrozole, Ibrance off label, bcs it's really recommended for Her2- and she just had scans but the many lesions in her skull did not get better, and some in her bones yes and many are stable, but some are new. Yeah i know it sounds crazy, so first maybe you would like to try that? And are your lesions in the brain, or in the skull? Are they gonna radiate, Dani had GammaKnife at one point, it did help some. Are they thinking why TDM1/Herceptin/Perjeta did not work? Bcs Dani also had these, they are supposed to be so good, so why did it not work for her and for you? She even had much progression on those treatments. Isn't it odd? Are you at a large center? We were, but they were kinda of giving up, so now she is with a private doc.

    Warms hugs....

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  • LM070917
    LM070917 Member Posts: 323
    edited April 2016
    Hey maryk87, really sorry to hear about your diagnosis. Can I ask how you found out, you had mets without symptoms, did you have scans/tests? Many people achieve Ned at stage 4 so try to be strong and I'm sure you can get through this.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    I got a second opinion today and I mentioned that I still hoped to have kids. The doc said that if I were hormone negative and got to NED he would've supported me getting pregnant. Now I'm not hormone negative so it's a moot point for me - I'm either going to have to do surrogacy or adoption. But I thought I'd share to encourage others that if you are hormone negative and NED, some oncs WILL let you get pregnant even with a Stage IV Dx

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  • MaryK87
    MaryK87 Member Posts: 53
    edited April 2016

    hi lottemarine! I had no symptoms except for a chest infection that i had just a week before diagnosis and by the time i was officially diagnosed it was gone..so no symptoms at all. In fact i was feeling better than before..no bone pain, no abdominal pain, nothing. I had ultrasound of abdomen that led to CT scan which confirmed lung and liver mets..bone mets were detected on bone scan with single met on sclerotic joint. Im 2 months and a few days out of stage 4 diagnosis..hope to count more..

    momallthetime! I have close relations support and feel im blessed. But i feel very alone at cancer center where i am the only one aged 29 and TNBC..all other ladies are either ER/PR positive or Her2-....one of them is stage 4 from past 13 years but again she is hormone positive...

    bad-at-username im amazed at your courageous decision to have children even being at stage 4. I gained much of courage and positivity from the ladies on these boards.

    hugs and love to all

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  • melp27
    melp27 Member Posts: 329
    edited April 2016

    hi mary k im no longer in my 20s but wanted to say hi. I also have bone and lung mets dx october 2014. Hasnt been easy so far dealing with ascites and fluid in my lungs but im still here :)

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  • seejuliago
    seejuliago Member Posts: 24
    edited May 2016

    Hi Mary K! So glad I found you and this thread-

    I was 24 at time of diagnosis (I'm 25 now) and I'm triple negative with a bone met to the sternum. No others as far as I know right now, but I'm in the middle of chemo. Surgery and radiation next. No family history, but still waiting on results of genetic testing to come back. I've been feeling similarly alone in being this young as well as being stage IV with mets and TN! Hope to talk more :)

    Julia

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  • MaryK87
    MaryK87 Member Posts: 53
    edited May 2016

    hi Melp!

    I am so sorry that you are dealing with what I dread the most with lung mets. I hope and pray you get over it soon.

    Welcome Julia to the place where I don't want to see any of us no matter old or young. being young with TN and stage 4 is the scariest thing to deal with. since you have a single bone met, there are pretty good chances that you will achieve remission soon. my disease was caught on a relatively advanced level. it was already there in my lungs and liver (double punch). my recent scans showed regression so im hoping to get into remission. at first i was devastated and chose to isolate myself but soon i realized every moment of my life is precious so i decided to LIVE THE MOMENT and enjoy every bit of life with a BIG smile. so chin up girl! and switch your battle mode on.

    Heart

    much love and hugs

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited May 2016

    Julia sorry you are going through it. My daughter has exactly the same feelings, sitting there with everyone so much older, it's very hard. My daughter's obgyn refuse to give her prescr for a mamo even though she had a nice size palpable olive size "something", he said: she is TOO YOUNG for it to be 'something", we paid out of pocket and the rest is History. And I hear this all the time, how docs ignore women even more than men, and young people for sure.

    Marky87 you did good in enjoying the moment. There are a lot of good tx always coming up, that's what we count on. Dani is on txs, that were not there just last year.

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  • TeeCM
    TeeCM Member Posts: 12
    edited May 2016

    I just wanted to send a huge hug and good vibes for recovery.

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