05. 05. 2020, Eschborn, Germany.
Being your own medical advocate can be daunting as a cancer patient, but it’s what has helped Shari the most throughout her journey. As a breast cancer warrior diagnosed in 2017, mother of 8 children, and motivational speaker, Shari holds a wealth of advice and anecdotes on the challenges of cancer. Now, during the Covid-19 pandemic, her advice is more applicable than ever.
Yes, I am currently in active treatment since June 2017. As a triple positive metastatic breast cancer patient I am currently having Herceptin and an aromatase inhibitor every three weeks. In June 2017 I had metastasis in both lungs, liver and one spot on my back. In March 2018 a PET scan from the neck down showed that my body was showing NEAD. Which means no evidence of active disease. My treatment was continued because I was already considered a late stage cancer patient. The Herceptin has served me well in helping to keep me NEAD from the neck down since that date.
Are there any resources that have been useful to you through your journey that you can recommend to other cancer patients?
I have learned a lot through women who have a similar BC diagnosis. The place that I have found them open to sharing is in a private Facebook group. I’ve gotten the best information and support when I joined a specific group that only accepts a patient who has the following diagnosis: stage four, triple hormone positive breast cancer and the cancer has spread to their brain. As my cancer has progressed and I’ve found myself dealing with new fears and unknowns this private group has given me the knowledge and support that I need. Unfortunately, it isn’t always a pleasant discussion to read but late stage cancer never is. I am a bit of a realist and I’m a say it like it is individual. I would rather know the good, the bad, and the ugly. It helps me emotionally prepare for what might be next. It often reminds me that I am doing very well physically considering my diagnosis. This also helps my emotional mindset.
We agree with you on the importance on staying informed. What are your thoughts on support groups? Are you involved in any?
I have tried a few support groups. Have I found one that I feel is a great fit? No, I haven’t. My experience has been that breast cancer patients tend to get together when their diagnosis is different. Those who are early stage and hopefully curable, to those who have a metastatic terminal prognosis. I feel that often early stagers have not been educated regarding the fact that once you have been diagnosed with an earlier stage cancer and even been in remission for over five years there is still a chance that your cancer will come back. People don’t understand this or some choose to keep their head in the sand. People are scared to talk to people who have a terminal prognosis and they certainly don’t want to talk or learn about EOL issues. I’ve found it impossible to find a resource or support group in the state that I live that is specifically for metastatic breast cancer patients. It is difficult to connect with national groups but I have been active in them when they do offer things and I am able to spend the money to travel.
What are the biggest unanswered questions you are asking yourself?
When will I need to make a decision between quality and quantity of life. How will I know it is time to make that decision for myself? I want to do this before I end up unable to enjoy the time I have left.
Are there any big questions you have regarding coronavirus and your treatment?
Is there any reason that my current treatment will change because of the COVD situation. It hasn’t for me.
How do you feel about the current messaging in the media (e.g. news, social media, etc.) about Covid-19 and cancer?
I feel that there has been little media that is covering the issue in my state. If I wasn’t on social media daily I wouldn’t know the information that I do. The message is getting out by cancer organizations and nonprofits. But most of the information that I see is coming from the cancer patients themselves as they learn more from this organizations as well as their own cancer and coronavirus experience.
Lastly, what advice do you have for other cancer patients reading this?
Learn what you can about your specific diagnosis and the current treatment protocols. Everyone’s cancer is different. Learn from other patient’s experience but don’t expect yours to be the same. It will have similarities and this can be helpful. Speak up and don’t be afraid to keep asking questions. Don’t be intimidated by the oncologists. Learn what you can before you go to your appointment and always have a few questions written down. This is all part of being your own medical advocate. Often a patient becomes a number. I don’t believe that the medical professionals mean or want for this to happen but at times you will feel this way. Develop a relationship with your oncologist. This will happen over a course of time. For myself as a stage four patient there are often difficult and uncomfortable conversations to have. Forming the trust and communication with my oncologist helps both of us feel more comfortable.
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