Update and encouragement needed

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lisjo
lisjo Member Posts: 12
edited June 2016 in Stage IV/Metastatic Breast Cancer ONLY

Hello ladies!
I hope everyone is enjoying their summer.
So I have been on Femara since February because Falsodex failed me. I have not seen my oncologist since early April and my tumor markers were around 160. All my blood work was fine. I am to leave this Friday for the Outer Banks and am not looking forward to it. When I come back I have to get a pet scan and blood work. My last scan in January showed two lymph nodes in my arm pit and next to my esophagus. I had rads to a small bone met in my pelvis last fall. The biopsy came back 5% ER+, which was my original status. My onc wants to do a biopsy on anything big enough to biopsy to see if my BC has changed. I did get a second opinion at the James Center in Columbus in early March and both oncs agreed I should stay the course of femera.

So, I assume the next scan will show progression as I doubt the femara is working. Isn't it risky to wait two months without any testing? Doesn't that give cancer a chance to grow?

New symptoms-I am overweight and had a tram flap so I have no stomach muscles. I went to Washington DC and walked and walked. It was difficult for me. Since then I feel I have inflammed muscles around my waist and hip. I do not have any constant pain-it just hurts when I twist or turn. I can walk fine, but have some tingling in my legs when I stand still. It is very light ad feels like it is on the surface of my skin.I also get a tightness and spasms around and in my reconstructed breast. My last scan said there were changes in that area. I don't even know what that means. Scar tissue?

I am going to see my radiologist about the muscle pain tomorrow. Any thoughts? Encouragement? and my last marker test in April was around 160. Shouldn't the femera have worked by then?

Feeling hopeless.
Lisa

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2016

    lisjo, my first thought is to tell you to go on that trip to the Outer Banks and soak it all in. Allow yourself to let the ocean waves wipe out your worries for the time that you are there. Suspend your concerns as best you can while on vacation. Try your best not to let bc rob you of these kinds of getaways. It is time to restore your soul and recharge your batteries. You are allowed to let go andenjoy yourself without carrying the bc thing around with you front and center all the time.

    Many of us get scans very six months. To go two months without testing seems normal. See what your radiologist has to say about the pain you're experiencing. Also, many of us find it helpful to take either an antidepressant or antianxiety med to help keep the fears in check. I take an daily antianxiety med and it allows me to move forward with my life and not let bc control me. If you aren't taking anything, you may want to consider asking your doctor about it.

    James Cancer Center in Columbus is a great place, I know numerous people who've gone there, so I would trust the second opinion you got there, which confirms your first opinion.

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  • lisjo
    lisjo Member Posts: 12
    edited June 2016

    Thank you. Your words are so comforting. I am by nature a "what if" and expecting the worst kind of person. I try not to be that way around my friends and family, but when I am home alone-oh boy! I hope the beauty and vastness of the ocean will remind me that God is so much bigger than cancer.

    Thanks again,

    Lisa

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  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited June 2016

    lisjo

    I am by nature an anxious person. This bc stuff has put that into overdrive at times. My MO knows this side of me well. So he always reminds me with each treatment change, "we have to give the meds time to work" and "things may get worse for a little while then get better." So far he has been right. I am on treatment #2 with afinitor and amiridex and right now stable. I have never been pain free so I have a daily reminder of stupid cancer.

    However this week I went rv camping with a good friend. I made a beautiful but painful hike and some how allowed the wonder of nature eliminate my anxieties for one day. I wish you the same.

    Mary


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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2016

    Here's a mental picture I've shared with others and it may help you especially when you go on vay-cay. Visualize putting all things cancer related in a box, no bigger than a small shoebox, put the lid on it. and then put that box on the floor and stand on it. When necessary, such as going to appointments and paying medical bills, mentally take the box out, open it, and deal with what you must. Then put it all back in the box, close it up and put it under your feet. In this way, you are contaning it. (And of course, for me, the antianxiety med helps me shake off the fear. Fear does sometimes crop up but I am able to shake it off so far.)

    When you go to Outer Banks, you might want to allow yourself 10 or 15 minutes a day to ponder the bc issue you are dealing with. And in some ways, it follows us around like a dark cloud coloring our lives. But then try to move past it, even if it is for 15 minutes at a time, or even an hour or more. Find activities that will occupy your mind, do new things to get your mind to rise to new challenges.

    The ocean is one big glorious place. I've gone to the east coast beaches three times since diagnosis in 2011 and hope to go again. Very healing.

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited June 2016

    The worry monster can eat up our good days. As much as scans are a pain in the butt, and cause much anxiety, they are the best tool we have to map out our treatments. When a treatment fails us, its good to know that we need to switch things up.

    Some drugs take a while to work, they are definitely not "over night" successes. I have had many small progressions on many drugs and we have waited sometimes 4-6 months only to have things stabilize. (8 years of the fun)

    Remember, this is a marathon. Each new ache and pain is scary. I always give myself the 2 week rule and try to think that it ISN'T cancer related.

    Enjoy your trip. Don't let your worries about tomorrows destroy your todays.

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