Looks like my biggest fear is coming true (not April Fools)

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elise24601
elise24601 Member Posts: 155
edited May 2019 in Just Diagnosed With a Recurrence or Metastasis

I don't want to die before I'm 40. Not ready to leave friends and family.

I'm 34, just found out I have a "lytic" bone lesion on the bottom of my femur (near knee). 5 x 10 mm. Now we have to scan full body to see where else it has spread :( I sure hope it's bone mets only and still hormone positive.

I don't get why people say MBC isn't a death sentence - it will kill me, just like it has killed so many of us! I'm so scared and sad. My mom's heart is broken. Family has been crying all day. I haven't gotten to do SO many things I wanted to do in life. I don't want more pain and suffering. I hate feeling and looking sick.

Not impressed by all the hype about new meds that only work for a year or less.

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  • whitelight-
    whitelight- Member Posts: 49
    edited April 2019

    Oh darling, you are indeed so very very young.

    A friend of my sister's was diagnosed with stage 4 cancer in her neck, throat, lungs, back, sides, and other places which I have now forgotten, at least three years ago --- She lives in Spain but her best friend there is a Spanish doctor. This doctor pulled out all of the stops and got our friend onto an Immune Oncology trial program. It is an American program which is monitored from the States. Our friend has been living a full and normal life through most of her treatment. It may not be the answer for you but it may also be worth your looking into.


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  • Lexica
    Lexica Member Posts: 259
    edited April 2019

    I'm so sorry to hear about this elise. I have no other words of encouragement than don't lose hope. hugs.

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  • goldie0827
    goldie0827 Member Posts: 6,595
    edited April 2019

    Elise yes, MBC will mostly like take all of us at some point, but many live years beyond. I myself have it spreading in my bones, almost 5 years. You have no organ involvement, so that is good. There is another gal here that is 18 years with MBC. Hang in there, try to be positive. Being sad and depressed is not going to help in any way, and not going to change things. Live each day happy. And there are drugs that work for a long time, I have been on Xeloday for over 4 years now. You are so very young, I hate how so many young gals have to deal with this disease. Stay strong....Hugs!

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  • KBeee
    KBeee Member Posts: 5,109
    edited April 2019

    Well crap. I hate this disease and hate that you have to deal with this. Hoping and praying that the lesion on the bone is all that is there, and that there is no organ involvement. Hoping you have a treatment plan in place soon and that it gets you to NED. (((((HUGS)))))

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  • screech
    screech Member Posts: 212
    edited April 2019

    I understand where you're coming from. I was "only" 50 when I was diagnosed and they found one met in my sacrum so straight to stage 4. I had always been healthy - I run, bike, eat decently, don't drink much....everything I'm supposed to do. I was so incredibly ANGRY!!!! I absolutely HATED hearing about "the new normal" and all that jazz. Flash forward five years......the met had a total response to chemo, I had a double mx, radiation treatment, a great plastic surgeon that "rebuilt" me and I have been ned ever since (knocking wood furiously right now!). Sure I now have doctor's appointments tests, and medications (1 x aromasin a day and a quarterly shot of treslar (trelstar?) and a zometa infusion) but I wake up feeling pretty good most days. At the start I could never imagine that I would ever have a moment of peace, but I have many now. I won't say everything is the same - it's not, but it's VERY acceptable:)

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  • Elderberry
    Elderberry Member Posts: 993
    edited April 2019

    Screech, you give me a glimmer of hope. My MO figured I'd be in the IIIB-IIIC range but it turned out in a PET scan there are mets in liver. Just found out today so I am feeling frozen in time. I can't even get myself to cry. I see stories of long survivals, mets almost disappearing after treatments etc. I need to hear/see more of them.



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  • KBeee
    KBeee Member Posts: 5,109
    edited April 2019

    Elderberry, I am sorry you are dealing with mets as well. This disease sucks. Hoping you have a plan in place soon, and that you respond very well to it.

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  • screech
    screech Member Posts: 212
    edited April 2019

    Elderberry - Fear creeps up on me once in a while. I try to visualize it as a box that I take down from a shelf - I give myself a little pity party, and then I put it back on that shelf. I know of many people my age (now 55) that are in worse health than me - they're dealing with high blood pressure, diabetes that they're having trouble with so they feel like crap all the time. Who knows what the future will hold, but it could be spectacular!

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  • Elderberry
    Elderberry Member Posts: 993
    edited April 2019

    Screech - thanks for responding. It is only days out so I am in a total state of semi-paralysis. My husband fell apart last night but that was actually good as he keeps things bottled in and it was a release of emotions. He's terrified. I see enough posts from people still doing well years after DX. that I am hopeful to be one of them. Is that your kitty? I have a bengal/tabby named Aelfric who is much comfort in dark times.

    This site is a Godsend. Everywhere else is all gloom and doom.





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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited April 2019

    Elise, I'm sorry you got this news. This disease sucks. It looks like you and I were diagnosed around the same time, and are about the same age. I have had many of the same thoughts you are having. I hope your upcoming scans only show limited bone involvement, and nothing else. I'm hoping the best for you - please keep us posted if you have a chance. ((Hugs))

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  • pippy1963
    pippy1963 Member Posts: 36
    edited April 2019

    Elise I am so sorry your going through this. I have just been told I have lung mets. I am devastated so I know exactly how your feeling. I am 50 and so mad. I was told offically three weeks ago and each day it gets a little better. The first week I had so many breakdown which I think the last time I cried was when I was 5. I dont cry my family thought there was something wrong with me the first day because I did not show emotion but then it hit me I let it all out which helped . So now There is a treatment plan in place which I find is helping. I also have ordered the book The PH Miracle for cancer. by Robert O Young. I will try and do anything in reason of course to help me. My nephew who does research for cancer and tells me there are so many new treatment coming up that it isnt a death sentence anymore. After talking to women who are going through what i am and listening to my doctors I feel hopefully. It took a while for me to get here but i'm still really mad and now its time for me to fight. I have surrounded myself with encouraging and hopefull people. Do I want to go through this, hell no but I have no choice so I will fight. I am sure I will have my good days and bad days this is my new life. I hope this helped you in some small way.

    pip.


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  • screech
    screech Member Posts: 212
    edited April 2019

    Hi Elderberry - just seeing how you're doing. Yes, that was one of my cats - Unfortunately he is no longer with us, BUT I now have two new cats that are great fun! My last MO appointment was interesting - they did a blood test for genetics - they must think I'll be around for a while if they wanted to see what else to look out for-LOL!!!

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  • JMouse
    JMouse Member Posts: 78
    edited May 2019

    elise24601, we don't know each other, but I'm sorry you are having to face this at all, much less so early in your life. I hate this disease.

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