Leftfootforward's Story: How Learning to Ask for Help Can Make Life With MBC Easier
Leftfootforward is a member of the Breastcancer.org Community.
I was 37 when initially diagnosed with stage IIB breast cancer in December 2010. Underwent A/C followed by T/Herceptin. I had a bilateral mastectomy and did 36 radiation treatments. I stayed on Herceptin for about 8 months before my ejection fraction ratio fell and I had to stop.
In December of 2012, I was diagnosed with metastatic breast cancer to my brain and my liver. Liver was too full of cancer to do anything but chemo. My brain mets were treated with GammaKnife radiation. Since then, I have been on Xeloda and Tykerb.
In February of 2015, I had a craniotomy to remove what ended up being only necrotic tissue from my original GammaKnife treatment. In July of this year, I had a partial left lobectomy of my liver to remove a solitary tumor. I was switched from Tykerb back to Herceptin. My last scans show that I am currently NED. I have enjoyed NED status most of my stage IV life.
I would tell people to always listen to their guts and to never be afraid to ask questions. I don't read statistics, as they are outdated for some and really don't mean anything. We will always live the rest of our lives with stage IV cancer, so why bother with statistics. I would tell anyone to learn to ask for help. As a mother of four, I have had to learn to let a little bit of control go to make my life easier. I have four kids (13, 10, 7, and 5) I have always been honest with them. I would tell everyone to choose how much they want to share with others. There is no right answer. You are allowed to share exactly as much as you feel comfortable with. But I do encourage others with stage IV disease to seek help, whether it be meals prepared by others, cleaning services, childcare help, etc. Find time to rest. Listen to your body and your mind. This is your own experience. Some will fight as long as they live and others decide to live out their days without treatment. It is your choice. Find the medical team and friends who support your wishes. I choose to live my life to the best of my ability.
A big thing is that side effects of drugs/treatment can be managed. Talk to your doctors. I was so sick with A/C and on the 3rd cycle finally said something. A few changes and my 4th cycle was amazing. Changes in dosage of Xeloda have helped with my hand-foot symptoms. Be honest about how you feel and see if your team can help make you feel better. Don't be afraid to ask stupid questions. There are none. And don't be afraid to advocate for yourself. Even if it means finding another medical provider.
This website is an amazing wealth of information and support. Try to find something that works for you. It can even be a non-cancer group. I work out at the gym 3 times a week to get rid of that excessive stress. It can even be as simple as allowing yourself a cat nap during the day. And try not to feel guilty. This disease isn't your fault. It doesn't discriminate.