Bad Pet Scan Results-please read and help me understand!

Options
lisjo
lisjo Member Posts: 12

Hi all,

One year ago after 17 years cancer free I had two lymph nodes and a small bone met on my pelvis. Did radiation and it took care of it. Then I was put on falsodex which did not work, then femera-did not work. I had a pet scan yesterday and found out today that I have multiple mets and some lymph nodes. I see my onc Tuesday, and he told me on the phone I will have to get chemo. I was ER+ but now I wonder if it has changed. He said something about a biopsy on a node that is by my esaphogus. I know that would be dangerous.

It is not in my liver or lungs. My question-can this be managed or am I looking at the end of my life? What kind of chemos are out there? I had adrymiacin, taxol, cytocin years ago. It was horrible.

Is there hope for quality of life?


Lisa

Comments

  • artistatheart
    artistatheart Member Posts: 2,176
    edited June 2016

    Lisa, yes there is always a lot of hope. Just read through a bunch of posts in here and you will see that many people have traveled a very long road with many different problems and are still here with a good quality of life. There are tons of new treatments to try and they will find one to help you. Hang in there, do your research and keep checking in to chat!

  • zarovka
    zarovka Member Posts: 3,607
    edited June 2016

    Lisjo - There is hope. The starting point is a biopsy to figure out the characteristics of the cancer you have now. Post all your diagnostic results in your signature line (update your profile and make it public). Get second and third opinions. Ask every question that you have on these forums and to your oncologist (why are we biopsying the lymph node by my esophagus?). Find the specific threads that correspond to your disease and read them. Find the bone mets thread. There are some really good bone mets treatments. And read bestbirds review of current treatments for metastatic cancer.

    Respect your concerns about quality of life. Treatments that undermine your basic health can work but they can also be counter-productive. One of the many judgement calls you will have to make for yourself. No right answers for Stage IV except what feels right for you. Scary, but we all intend to beat this ...

    Welcome

    >Z<

  • jobur
    jobur Member Posts: 726
    edited June 2016

    Hi Lisajo,

    Good advice above. I have no personal experience, but know from reading other's posts that chemo for stage IV is a different beast than when given for early stage. At early stage they are trying to kill the cancer without killing you (barely!), so it is high dose. With mets we are looking for longevity and QOL, so chemo is not so harsh as your prior experience.

    Sounds like a biopsy to revisit your cancer's characteristics would be a good idea now. Maybe the biopsy location is negotiable.

    Keep your chin up and don't let that those dark clouds fool you, these is sunshine behind them! Sending hugs.

  • HLB
    HLB Member Posts: 1,760
    edited June 2016

    I have one of those nodes near the esophagus, I think it said hilar node. They were slightly suspicious but after it showing up 3 times they are just saying it's reactive.

    There is definitely lots of hope and I doubt that you are near the end! Stay here and you will learn a lot and get all the support you need. He may bwant to do chemo to get things under control if there is a lot of mets, then probably go to an AI or something much easier. I have mets for 4 years and still feel fine, working FT, and many have been here many more years than that!

  • Texasrose53
    Texasrose53 Member Posts: 354
    edited June 2016

    Lisa there is definitely hope! I was diagnosed Stage IV in May 2015. Mets to my lungs, sternum and a couple lymph nodes. It has now been 14 months of chemo and I am still feeling great! I feel the same as I did the first day I started chemo. I have been on two different kinds (Taxol and CMF). I am currently stable. So yes...there is hope!

  • pajim
    pajim Member Posts: 2,785
    edited June 2016

    Lisajo, yes it can be managed. The biopsy will tell you what characteristics your cancer has at the moment. That'll help inform how to treat it. For instance, there are many clinical trials available for women with certain cancer mutations.

    If they give you "chemo" it will almost certainly be either a different drug or at a much lower dose than before. That should help with the side-effects. (FYI Ibrance is a chemo, so is Xeloda, but they're both pills)

    I can tell you're nervous about chemo. SO. Here's where you need to decide what's important to you. You'll figure this out as you go along. For instance, some women would live with nausea if it prevented pain. Others would choose the opposite. So when you try a drug, if it's giving you side-effects you can't stand, you get to decide you want to switch.


  • kayrnic
    kayrnic Member Posts: 1,708
    edited June 2016

    Hi Lisjo,

    There is hope and you may very well find yourself living a quality life. Once they get the disease under control and find out what meds work for you, things will improve. Don't give up!

  • donsuzbee
    donsuzbee Member Posts: 129
    edited July 2016

    I had local Mets 8 yrs after orig dx. Radiation treatment. Mets to spine another 8 yrs later. Faslodex/Aredia treatment. Met to left adrenal gland 3 yrs later. SBRT and now NED.

    Hang in there!!

Categories