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Young with MBC

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  • Daylightdancer666
    Daylightdancer666 Member Posts: 30
    edited December 2019
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    Im a member if cancee eeseaech uk and someone found posr abour. Me having mbx and has been messaging askinf adcice etc which dont mind but nor sure if irs cause i was in oain deelinf vulnerable or facr i suffer from. Deoeession and anxiety but she asked. Me. Id i askwd. Mt. Oncologist how long i got leff and it hit w nerve im. Only 32 =( i never ssked shoukd i asked how long i gor left. I knoe i shoukd be dealing with my condition bur feel like this huge thinf ri deal with at 32 never mind asking how long i got left especially whej imndealinf witjndact muk has cancer too xxxx

  • nikisworld
    nikisworld Member Posts: 8
    edited February 2020
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    hey everyone. I had stage 2 breast cancer in 2015. It was grade 2. I was on tamoxifen for 4 years. Unfortunately today I found out I have a met to the lung. Pulmonary nodule which has turned out to be cancer. I was 25 at time of diagnosed and 30 now. I feel my whole life has turned upside down. I’m devastated.

  • moderators
    moderators Posts: 7,918
    edited February 2020
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    oh Nikisworld, we're here for you Medicating and you're not alone. There are so many new, effective treatments, so don't give up hope. Are you at a good treatment center? Do you like your team?

  • Aprilck86
    Aprilck86 Member Posts: 4
    edited February 2020
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    hi, all, I've just joined and this is my first time posting. I had stage 2 thyroid cancer in 2009 and was recently dx with met bc in December. I'm 33 with a 5 and 8 year old. This has all been very overwhelming for me and I am still coming to grips with my diagnosis.

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited February 2020
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    Hi April,


    I don't have mets but you will find good information on this site.

    I'm sorry for your DX - I'm a 2x BC survivor myself.

    Stick around, poke around, find your tribe.

    We are all in this together no matter our DX/TX.

    Hugs,

    Jaybird ~

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited February 2020
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    I am almost 43 and was diagnosed de novo on my 40th bday. I am still here and doing pretty well all things considered. Just want to share some hope and optimism. The first 6 months to a year after diagnosis are very very scary, but it DOES get easier. Believe it or not, I actually have moments where I forget I have stage 4 MBC.

    There’s a couple young thriving MBC’ers that helped me feel less alone, initially. Their names are Nalie Augustin and Stephanie Seban. Check them out on IG/FB/YouTube/and they have their own podcast now and have written their own book on how to thrive with mbc. They are awesome and really have helped me feel better about all this.

    Love,

    Phill

  • moderators
    moderators Posts: 7,918
    edited February 2020
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    Welcome, Aprilck86. We know how overwhelming this can all be, and we're so sorry you find yourself here. As Jaybird said, we're all here for you.

    The Mods

  • sondraf
    sondraf Member Posts: 1,581
    edited February 2020
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    Philly is right - I am 42 and was diagnosed less than 6 months ago. No family history, no risk factors,no prior breast cancer etc etc. I am adjusting to the meds and this whole 'new life' which, to be fair, doesn't look too much different from the old life, other than having to go hang at the hospital a few times a month. On my non fatigue days (most of the month) I feel better than I have in ten years and usually do forget about the cancer bit, but I also have some back issues that take up a bit more of my attention right now.

    The diagnosis truly truly sucks, there is no getting around it. But there are a lot of ladies on here living lives with the same diagnosis, and more than a few in the 'early 40s de novo club' holding down jobs and raising kids, and I want to say one or two even younger, though they may not post very often. Give yourself the time and space to feel and accept it, stay on this site and away from Dr Google, get your plan sorted out and it will all come together. This disease has a really good way of making you focus on what is important (special moments with family) and what isnt (putting up one second longer with anything that isn't making positive contribution to your life). You too will get to a point where not all the news is bad, where your treatment is part of your routine, where you go about your day living life and taking care of your family.

  • traii
    traii Member Posts: 379
    edited February 2020
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    Hi April,

    Sorry you're here but glad you've found us.

    I'll be 42 next month. Have a 10 year old son going on 20🤦 Ive been Stage 4 for just over a year now.

    Like Philly mentioned, there are times I too forget I have Stage 4 MBC! Until I remember it's that time of month for bloods, Xgeva shot and visit with my onc!

    I guess once you find your new 'normal' you will get on with your day to day routine and live life to the fullest.

    All the best xx

  • Leslie45
    Leslie45 Member Posts: 3
    edited February 2020
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    I just wanted to say I have never been so touched by reading these posts from so many faced with MBC and so young. I'm sorry for being here because I'm older with MBC. I now realize I need to stop feeling sorry for myself and put my big girl pants on. You all have so much to live for and have saved me. I by choice was going to give up! 27-29 1144.1. Now after reading your stories nope, fighting till the end. I will now go to the old ladies MBC site.

    Thank You

    Leslie

  • Sf2008
    Sf2008 Member Posts: 6
    edited February 2020
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    Hi I'm new here, just diagnosed yesterday with mets to the spine, will be starting radiation on monday, along with a week fulk of all the other scans to see if there more in there. We are just assuming it's the same tnbc as the first.

    I'm 32, two kids, full of sadness for my kids. Looking for hope, inspiration.

  • lawgirljenn
    lawgirljenn Member Posts: 4
    edited March 2020
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    Hi, everyone.

    I was just at diagnosed as having mets to hip and possibly spine/stomach. I’m still trying to wrap my head around it. I have a biopsy on Wednesday so we can determine treatment. My back has been hurting quite a bit, so I'm hoping for some palliative radiation.

    I'm 40. Married with two kids (13 & 10). I'm an attorney with a solo practice, and I'm trying to figure out if I can keep that going. I'm worried it's too high stress.

    I hate that we have to be here, but I'm grateful for the support, and looking forward to getting to know everyone.

  • Partyoffive
    Partyoffive Member Posts: 53
    edited March 2020
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    hi everyone

    Though I don’t fit into the “young” category right now I was 43 when diagnosed de nova. I had innumerable bone mets and was basically told to not buy green bananas(I kid you not-though the onc thought he was funny I didn’t) I have five children who at the time were 8,10,13,15,22. I made the choice to be very open and honest with them even the younger ones I thought long and hard about if I were in their shoes would I want to know and be prepared and my decision was to tell them but that is a personal choice and I respect how and when others decide to inform their children,family members and friends. Long story short almost 7 years later I’m still here. I was on my first med for 6.5 years. I have a great qol and have been present for many things I didn’t think I’d be here to experience. I know I’m sick of people telling me to be positive you deal with it the best you can and some days are better then others but any day is better then no day. Best of luck to all of you

    Kristin

  • Daylightdancer666
    Daylightdancer666 Member Posts: 30
    edited March 2020
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    Hey hun im 33 diagnosed ar aged 32 with stsge four breast csncer spread bones spine skne livee deposits and skull. Ive hsd radiotherapy to skull lumber snd thorasic. Ehuch has eased pain considerably in on lethzole which has got rid over livee depisits snd shrunk other tumours in bones

    Ive got surgery Wednesday for my crushed verrbae im also on zoladex and denasaub xxx

  • moderators
    moderators Posts: 7,918
    edited May 2020
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    Daylightdancer666, we are thinking of you, and thank you for sharing your story. I'm sorry you haven't received a response. Let us know how you are doing.

  • Seilien
    Seilien Member Posts: 27
    edited June 2020
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    I was 1st diagnosed with stage IV BC at 26, my daughter was 6 months old. I had chemo, radiation, double mastectomy. Have brain mets now, got surgery and gamma ray. Been taking tamoxifen for couple years. Little to no family cancers and it is a mystery why I got it at all.

    I think I am so far past being emotional about my situation. I am very sad for my husband (28 yo) and my daughter (2.5 yo). But we cant live like this forever? I am recovering from the recent medical experiences and am learning to live my best life. Too bad that I'm still laying around a lot. I dont know what the next steps for me are yet because I already did most of the aggressive approach to treatments/surgery. It's the unknown that is difficult to wait for through all this.

  • moderators
    moderators Posts: 7,918
    edited June 2020
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    Welcome to our community, Seilien. We are so very sorry you find yourself here, we know what a difficult journey this is. The unknown is so hard! But we're all here with you, and we're here for you.

    The Mods

  • sofabass
    sofabass Member Posts: 4
    edited June 2020
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    Hi I joined this group because my best friend is too sick to. I'm hoping to encourage her on here, as I think it would help her immensely when she's feeling better. She went mis-diagnosed, a dark comedy of errors, until she had spinal compression. She is ER-, PR+, HER2 (equiv). I am the one that go her to go to MD Anderson ER when the back pain meds didn't seem to help. She is 38 and had an estrogen-pumping IUD in! I swear this has been horrible. I am here to ask for information about her side effects. It in 8 locations (bone only), but it had been mining away significantly her T10 and T3. She had massive spinal surgery/biopsypins & rods 2 weeks ago.

    She is taking Lupron injections and just started Tamoxifen. She was taking methadone and gabafentin, and is trying to ween herself from both. She has had 4 radiation treatment. Could anyone please advise about what could be causing her side effects.

    She said its the worst she's felt. She threw up twice last night for the first time. Her throat feels like theres a lump in there. Bad nausea, ate a little, but couldn't keep it down. She is completely lathargic, no energy. It was her daughter's graduation party and she only got up for 10 mins to eat. DOes anyone know if these are side effects from the radiation, Lupron, Tamoxifen, the cancer?? The combo. I hoping this is just temporary. Could this possible be her new norm or is her body going into instant menopause and causing issues? She is also having claminess. Sweating palms, etc.

    I want to tell her its temporary. She is scheduled for an oophorectomy on Monday. I'm feeling terrible for what she is going through. What everyone is. Anyone have any advice?

  • pja2001
    pja2001 Member Posts: 1
    edited August 2020
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    Hi there -

    My name is Peter (yep, I'm a boy) and I just received my MBC diagnosis today. I'm 37. I presented about a year ago with a small (don't remember the size) tumor under my nipple and 3 lymph nodes involved. ER/PR+ (100%)/HER2-. Since then, nothing has been going well for me. My doctors recommended I do neo-adjuvicent chemotherapy, which didn't seem to do anything. Pathology after surgery confirmed the tumor was larger and 8/15 lymph nodes were taken were positive. Did radiation and then started xeloda. In the initial diagnostics, they saw small nodules on my lungs. CT scans every 3 months showed the nodules unchanging in size. Then I go in for my 6 month follow up with my surgeon at the end of last month and she finds a new tumor. She orders a PET and it shows on the nodule on my lung had doubled in size in 3 months and lit up. Biospy confirmed its mets. Somehow those nodules didn't grow while I wasn't do anything systemtic but then decided to grow while taking xeloda.

    I hadn't really started hormone therapy yet and am now starting tamofixin and Verzenio. They all tell me it should work, it should keep the tumor at bay if not get rid of it. After being told that things would work all along and seeing nothing work, I don't have much hope that in 3 months my next set of scans will light up like an Xmas tree. And then I'll be gone.

    I keep humming "Another Day" from Rent. Particularly this passage, which has taken on such new meaning to me.

    I can't control

    My destiny

    I trust my soul

    My only goal is just

    To be

    There's only now

    There's only here

    Give in to love

    Or live in fear

    No other path

    No other way

    No day but today...

    I'm scared. I'm tired of fighting. I don't want to be a patient anymore, but looks like I always will be.

    My only goal is just to be.



  • illimae
    illimae Member Posts: 5,574
    edited August 2020
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    Peter, I’m sorry you’re here, it must be really weird being the only guy in the waiting room in addition to all the cancer stuff. I’m sure you’re welcome here but if you’re interested there are a few threads here for and about men with bc, I forget the names but doing a search might bring them up. A caution about tamoxifen, it can put you in a really bad mood, you might apologize to those you live with now. Fortunately, I found the mood doesn’t last too long, good luck 😁

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited August 2020
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    Hey Peter,

    I’m so sorry you’ve found yourself here. I know its scary because I’m right here with you as so many others that are in these groups and we are all here to support one another, so just keep writing and sharing your story with us if you feel up to it. you’ve been through a lot. I can completely understand being tired and depressed.

    I was diagnosed with de novo mbc on my 40th bday. I was on Ibrance and Lupron and xygeva and letrozole as my first line of treatment and it has worked for 3.5 years and I’ve just had progression to my liver and lungs. In fact, just home after a liver mri!

    Have you asked your MO about Ibrance and letrozole? Also, have you gotten 2nd opinions? What cancer center are you being seen at?

    i can’t tell you what is in store for us but I can say that I will cling on to the possibility of hope. Hang in there!!! There are many reasons to be hopeful.

    Love,

    Pholly

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited August 2020
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    sofabass how is your friend doing? I know it’s very scary to witness your friend sick. Has she reached out to her oncologist? That would be step one.

    Are you her primary caregiver?

  • nayda985
    nayda985 Member Posts: 270
    edited September 2020
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    Peter,

    You are strong and you can do this. It takes lot of strength physically and mentally. I have had the cancer blues, I run to God and my mother when this happens and have a good cry. I pray you find your happy. What I mean by that something or someone who lifts your spirits. God, my mother, and my children are my happy.

    I really feel you should get a second opinion. Most oncs pull out the heavy artillery on the first treatment. My onc tried me on xeloda (5th chemo). I had progression also with this chemo. Now I am on carbo/gemzar and they are working. I got my scans friday and they were clear thank God. I stay hopeful and I have learned through this is to stop worrying about things I cannot control. I am very vocal with my nurses and my oncologist. A surgeon is good at cutting, so don't even see a surgeon, I rely on my oncologist.

    I believe in you Peter you got this!

    Heart

  • anzu2snow
    anzu2snow Member Posts: 2
    edited September 2020
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    I’m 35 and was diagnosed back in April. I didn’t have a cancer diagnosis before that. I guess that’s called de novo? Having metastatic breast cancer right off the bat was shocking at first. Still feel new to it. I’m also the youngest in my family to get any form of bc. My mom had bc at age 47, then mbc at 54. She passed away in 2012 from an abdominal tumor not related to it. (She was almost 57.) Her mom had it in her 60’s, and her grandma had it in her 70’s. Her sister, luckily is still around, had it in her 50’s. Seems to hit younger with each generation. Mine seems more aggressive than my mom’s was. It’s widespread in my skeleton and has now made it to my skin. Luckily, it hasn’t gone to places like my brain or liver yet. The only way we found out about the cancer, when we did, was because I fell and broke my right shoulder back in March. I had awful swelling, from the meds they put me on for it, that wouldn’t go down and went to Urgent Care. They did a bunch of imaging and found the mets. They were suspicious of them, and then I got a mammogram and they biopsied both breasts quickly after that. They suspect the mets in my right shoulder caused the break. I did fall hard in the shower, but it was unusual to break it the way I did. I’ve broken a vertebrae and a few ribs since then. I wasn’t even doing anything with those. It’s been hard recovering from the broken shoulder and cancer stuff. I’ve already had people tell me I’m too young to have it and need palliative care. Some have said I’m just going through a difficult time and I’ll definitely beat this. No, I won’t. I have to live with it for the rest of my life. I hope I still have many years left, but the stats are scary.

  • illimae
    illimae Member Posts: 5,574
    edited September 2020
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    anzu2snow, welcome :)


  • kbl
    kbl Member Posts: 2,682
    edited September 2020
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    Hi, anzu2snow. I’m sorry you’re going through this. I just wanted to let you know there is a de novo thread I started a few months back if you’d like to look through it. You can look up De Novo Stage IV.

    Peter, I’m so sorry about your diagnosis as well.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited November 2020
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    I everyone, I have recently joined this club after a Stage 1A diagnosis in 2016. For me things have never gone the usual way. At age 32 I found the lump myself, and everything pretty much went downhill from the start.

    Unfortunately, I had needle seeding during my initial biopsy, which basically means that the biopsy needle dragged cancer cells through my breast. My doctors at the time did not catch on to that for almost a year. I went through surgery, chemo, radiation, and was on hormone therapy when a small area of "fat necrosis" started growing rapidly. It was local recurrences (or persistences, depending on which doctor you ask) in my skin. Although I had multiple local recurrences, I had no evidence of metastatic disease, so we hit it hard with curative intent. I again went through different regimens of treatment: surgery, chemo, radiation, and hormone therapy. I even had a chest wall resection and skin graft to remove all the skin lesions.

    The good news is that the skin lesions have not returned. But things have been rapidly deteriorating lately. In April we found a cancer in my axilla, then in August it was in my bones, and now there is cancer growing rapidly in my dura (the lining of the brain). All this seemingly came out of nowhere, because I had a totally clear PET scan in January. I'm afraid it's the beginning of the end for me, but I don't really know. I'll see my MO tomorrow. It's surreal.

    I was Stage 1A only four years ago. I "caught it early" (I hate that phrase) and did all the treatments. But my cancer is just a beast: it seems to resist, and even grow, through everything that we throw at it, including Ibrance. Right now I am just sad. Deep down I think I always knew it would come back, but I had hoped to have a little more time. We all want that I suppose. Best wishes to everyone in this terrible situation.

  • star2017
    star2017 Member Posts: 370
    edited June 2021
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    Hi all, I had my stage III diagnosis when I was 37 and pregnant. At 40 I began feeling pain in the leg which I recently found out (at 41) is metastasis. It's been a rough couple of months; however, I am beginning to feel better and more hopeful.

  • micmel
    micmel Member Posts: 9,868
    edited June 2021
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    sorry you’re in this club no one wants to be in. One day at a time is all you can do.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited June 2021
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    Hi Star, thanks for saying hello, although I'm sorry you've found yourself here. I hope your current treatment is treating you kindly and keeping you stable!