Maintaining Health Records during a Cancer Diagnosis
This is a post about the importance of maintaining accurate health records during a cancer diagnosis. But, today is probably one of the most difficult posts I have written in a while because of the events listed in this post that happened withing a month’s time to me and my family in 2014 during the time of my second breast cancer diagnosis.
Why I do What I do
I am an educator for all options of breast reconstruction after mastectomy. After much research on my part to find a skilled, compassionate and qualified plastic surgeon; I had a very positive experience. I know that all women are not told about their choices for reconstruction like I was. Additionally, some have not had the powerful and positive experience that I did. I share my experience through outreach and I educate others in hope of informing and empowering patients to make the best possible decision for breast reconstruction should they chose to do so. Hopefully, like myself, it will lead them to moving beyond breast cancer.
The Value of Easily Accessible Health Reports
That said, I always try to stay positive. It’s my way, my principle, and my strength. But, we’re all human. The event that has been my nemesis throughout this journey was the day I was told I was stage IV metastatic and that cancer was found in my spine based on lesions that were detected from a scan. Here are the events that lead to that day and why I dread getting what I hope is the last scan to see if those lesions have stabilized. The important take away from this entire blog to my readers is; maintain all your health records accurately. Ask for reports after appointments and procedures. Keep them organized in a place in your home that is meaningful and easily accessible when you need them.
I was diagnosed for the second time with breast cancer on April 2, 2014 after my yearly mammogram. These bullet-ed items may give you a peek into why maintaining health records is so important. It will also give you an idea of why so many of us dread having scans.
Taken from events I went through with my family in one short and difficult month in 2014:
- April 2 ~ Mammogram. Radiologist highly suspected cancer after reviewing films.
- April 3 ~ Returned to imaging and radiologist for a right breast needle biopsy to confirm suspicion.
- April 8 ~ Cancer diagnosis confirmed by my breast surgeon at an office visit.
- April 9 ~ Genetic counseling for BRCA gene due to early age of first diagnosis and 2nd occurrence in new breast. Overwhelmed, couldn’t go through testing. Only did counseling at that time.
- April 12 ~ Breast MRI performed to determine if double mastectomy was going to be the best course of action to remove right breast tumor
- April 15 ~ Bilateral breast biopsy performed due to new tumor detected in left breast from 4/12 MRI
- April 16 ~ Thoracic MRI performed due to lesions spotted on my spine from 4/12 MRI
- April 17 ~ Diagnosed as stage IV metastatic based on report from lesions seen from thoracic MRI on 4/16. Tears, fears, and doing crazy things like lying in bed at night planning your own funeral songs!! Don’t even ask what this did to my caregivers and extended family. Cancer = Ugly vortex sucking many down!
- April 25 ~ PET/CT scan ordered and done to take a closer look and verify area and extent of lesions from thoracic MRI on 4/16
- April 25 ~ 7pm phone call from oncologist (a Friday night!! Thank you dedicated oncologist) to say that nothing “lit up” on that PT scan. HOPE, a glimmer of HOPE!! But, she wanted to do a bone scan to clear up all question in her mind.
- April 26 ~ Texted/emailed, sometimes frantically so, my oncologist, sending her FAX-ed medical record reports from a similar scan done seven years previously at MD Anderson after diagnosis one. This is proof positive that keeping accurate medical records became important to me. I’m shouting it out to all to keep your records on hand and accurate.
- May 6 ~ Bone Scan ordered to take a different view of those lesions seen on MRI from 4/16 and PET/CT from 4/25
- May 6 ~ Picked up oldest son from the airport after scan. He flew in from Seattle to be with me and his little brother to celebrate Mother’s Day 2014. They both gave me a beautiful bouquet of red roses on May 11th, Mother’s Day 2014.
- May 8 ~ Hubby and oldest son (youngest was finishing college finals) went to appointment with oncologist to find out results of bone scan. Because of those health records I Fax-ed her from seven years previously, she told me the lesions had stabilized, not changed enough to do further/justifiable testing in her mind. Monitoring would continue but they were retracting the stage IV diagnosis based on all the scans. Hubby, oldest son and I went straight to happy hour to celebrate!
- May 13 ~ oldest son flies home to spend a weekend with his wife.
- May 14 ~ double mastectomy
- May 18 ~ Oldest son returns to help with mastectomy recovery
Fast forward……..
- October 15 ~ Oncologist orders another scan to revisit spinal lesions to make sure of stabilization. I insisted on talking to the radiologist before I left that day. Be your own advocate!! Nothing had changed! No new lesions. Onward and upward to Phase 1 reconstruction December 1, 2014!
Scanxiety
When I finished phase 2 of my breast reconstruction in early April, my plastic surgeon called me one day to have a post-surgical chat. We talked about follow-up appointments and what was next for me after reconstruction. He was kind enough to ask me how I felt about another scan. He acknowledged the anxiety that is caused by having them. Thank you Kind Sir, for asking and being compassionate! I put on a brave face and told him I won’t be as nervous about the next one. That brave face has since turned to fear, once again. My next scan to revisit these lesions is coming up in early September 2015. I’m scared, again. If they have stabilized this time and there is no visible change, my oncologist says this will be the last scan to check them unless I have symptoms down the road.
The Adversary & Arch-Rival
Do I have scanxiety? Call it what you will, scan PTSD, anxiety, scanxiety…. It’s real and it’s palpable every time I have to go through this. It does not get any easier. I try to stay positive in my writing but behind each of our cancer or BRCA stories, there is an adversary, an arch-rival. Mine was being told I was stage IV metastatic. I have a job to do. I have a passion about educating women dealing with a cancer diagnosis, twice, and moving beyond that to breast reconstruction. I don’t want anything to slow me down or stop me from doing that. I can’t tell you what respect I have for those who are living with stage IV mets. It means that your cancer is no longer curable. We do need to focus more on finding a cure and doing more research on metastatic cancer. I get why there is a new movement and powerful voices in the metastatic community. I get why there is #MetsMonday and #IAmALifer on Social Media. I was in that club for a very brief and frightening week. People just don’t always understand the depth and meaning of what metastatic cancer means. There are several organizations that are leading the way in research, awareness and support. Here are just a few.
So I say again with importance and affirmation: keep your health records accurate, up to date and easily accessible. They were invaluable for me in April 2014. I suspect that will not change any time soon. I remain cautiously optimistic for the future.
Thank you for your article. I too keep all my records in one place, a binder. I find it helps me tremendously. I have just finished my second stage of reconstruction. My first 6 month checkup with my oncologist is next month. I don’t know what to expect except bloodwork for sure. I don’t know when or how often I’ll have scans, etc. It seems there is a lot they don’t tell you such as what the new plan is now that the mastectomy is over. I do know I will have breast MRI’s every 2 years at the minimum. You can bet that I have a list of questions for my oncologist. I am surprised at how anxious they (the doctors) are to get in & get the tumor out but once it has been determined that you don’t need chemo or radiation there isn’t quite the sense of urgency to monitor you. Talk about giving someone anxiety! As you said, we have to be our own advocate. I am wishing you great news on your next scan and peace for your heart.
Kim, first of all thank you for the kind words as you concluded your comment. I know as a DIEP flap reconstruction patient I will only have a baseline MRI six months after the last phase (for me phase 2). My plastic surgeon recommends this and it makes sense to me. If you have implants it may be different. Keeping records is crucial. Once you are diagnosed with cancer it is important to stay vigilant and to convey to doctors the importance of your concerns. They are busy folks, as well, and I think if we approach them as we would want to be approached this sometimes helps. I wish you all the best and it sounds like you advocate well for yourself.