I was stage iv, but told stage iib

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gramen
gramen Member Posts: 179
edited April 2016 in Stage IV/Metastatic Breast Cancer ONLY

I'm told to enjoy every day, but reality is that I wake up mad, sad and feeling so guilty for trusting my oncologist....

I was diagnosed in July of 2014 (4 days after turning 35) with her2+ breast cancer that consisted of a small tumor on the left breast but had spread to 3 lymph nodes. There was also a 8mm lesion in my liver, which was too small to biopsy so had an mri of the liver and told we were going to watch it.

Had a scan in December 2014 after Taxotere/carboplatin/herceptin/perjeta and only 2 lymph nodes lighted up so told I had great response to chemo, that even those lymph nodes had reduced in size more than half, and that the liver thing disappeared and it might had been cancer or something else and went away.

Fast forward with bilateral mastectomy, radiation and reconstruction. And 1 year of herceptin. I ask everyone in my team, even plastic surgeon when is my next scan? No scans, we just monitor symptoms and blood work. So I went up to famous cancer center in the metro area for consultation Dr agrees that's the standard of practice (but she didn't have all my records, not even sure I mentioned the 8mm "lesion" in the liver...that's when the guilt kicks me in the gut)....

As the good patient I am, every 3 month check up I brought a list of symptoms but Dr kept telling me to live my life and reminded my I was 36 not 63....my husband found that funny.

This past March 4th my breast surgeon finally agreed to do a scan of my chest since I was complaining of pain on the right side (non cancer breast) and added "so you can sleep at night".

That same day he called to tell me if I remember the small thing in my liver, that it was now a 5 cm tumor...subsequent test showed a second 8mm spot in the liver and a number of lymph nodes....

How how how am I supposed to wake up and enjoy every day? When I was let down by my Dr? I should have demanded a scan or change Dr's! I changed Dr's now, but damn, stage iv gets very different treatment, I mean, no hope and no sense of urgency at all. I'm still not in treatment and just worry how this nasty her2 crap has spread inside...while I here watch my family and worry and cry and ...

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited April 2016

    Gramen, I am so sorry for all you have been through and continue to experience. It is a scary world for us when we are diagnosed with stage IV. The first thing I want to do is tell you not to feel guilty or remorseful for things that you or did or did not do in the past. We can all look back and say "if only", but it doesnt't change anything. None of this is your fault. Please remember that. NONE OF THIS IS YOUR FAULT!

    There is no cure for stage IV bc, but there are treatments available that can help us live for a long time. Welcome to the stage IV forum of bco. You have come to the right place. You will find many helpful and supportive people here who will answer you questions and offer advice.

    It does seem like a long time to wait for your treatment to begin. When will you see your new oncologist? Make sure you are comfortable with him or her and feel that you have found the right person who is willing to work with you to find the right treatment plan for you. My onc supports my goal to live for many, many years. If your new onc does not give you hope, please find another one. Your onc should understand that there IS urgency here. You are important, and beginning treatment is very important.

    I understand why you feel as you do. It sounds like your doctors could have been more aggressive about monitoring for progression and identified it earlier. Unfortunately, your are now in this scary place. It is normal to be frightened. Everyone on these boards has been there. I hope that once you have a treatment plan in place and begin to see results, you will start to feel better.

    You will hear from others soon, and they will have have words of wisdom and encouragement for you. I am sending hugs your way.

    Lynne

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  • gramen
    gramen Member Posts: 179
    edited April 2016

    Thank you Lynne!!! I'm trying trying to move forward, but is soo hard. Got re-ported on Friday, will start treatment Tuesday, hopefully will find something that works...

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

    so sorry to hear your story! That's awful! But you will feel better once treatment gets underway. It's amazing the options available these days and you may find yourself still living a long and productive life. Love and hugs!

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited April 2016

    Hi Gramen,

    There is every reason to hope you can beat this, or live with it as a chronic condition and with a good quality of life. For Her2++ there are many treatments available to you in the near term, with super-effective vaccines and immunotherapy available in the coming years. Imagine a full life ahead with your family, friends and kids; science is closer than ever to solving this. And consider that in the year when you had no treatment at all, it did not take over your body. Hard as it is, just try to focus and get informed on treatments in development and possible clinical trials, relax and enjoy your life!

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  • gramen
    gramen Member Posts: 179
    edited April 2016

    Thank you for the encouragement! 1

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

    Yes, that is a pretty terrible accounting of how you were cared for. And Lynne is right none of this is your fault. Damn cancer discriminates against no one. There are a lot of treatments and many women live a very long time. Take each day as it comes and keep the faith!

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  • gramen
    gramen Member Posts: 179
    edited April 2016

    Live and learn, now at an accelerated pace :-)

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited April 2016

    Gramen, I have been thinking about you today because I think you were expecting to have a treatment plan. Has a decision been made? Are you comfortable with decisions that are being made?

    Lynne

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  • gramen
    gramen Member Posts: 179
    edited April 2016

    Dear Lynne,

    I'm having infusion as I type! Got started with perjeta/herceptin/navelbine...I'm very hopeful now that treatment has started and got appts to see psychiatrist and social worker I realize I may need a little help :-)

    I've only seen this oncologist twice but so far so good. Crazy that I've seen 4! Getting used to the large cancer center procedures/atmosphere but it feels like a wise decision at this point.

    My most sincere thank you for all your words and encouragement!!!!


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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited April 2016

    Gramen, I am glad you are now in treatment. It has been a difficult road for you. I hope your current oncocontinues to be a good fit for you. There are definite advantages to large cancer centers. They are right on top of things and are aggressively looking for new treatment options and are the leaders in clinical trials.

    I hope that chemo quickly starts kicking that cancer to the curb. Please keep us informed of your progress. We are all pulling for you.

    Lynne


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