My Cancer Journey and the ‘Cures’ Act

By Leslie Piet

I was originally diagnosed with Stage 2B-3A breast cancer in February 2018.  The journey included chemotherapy, bilateral mastectomies with saline tissue expanders, and radiation therapy.  As difficult as a cancer diagnosis can be, my husband has been my steadfast supporter through everything.  He told me, “I signed on for better or for worse.”

An issue that I developed was congestive heart failure (CHF) in 2018, possibly a side effect of chemo.  With excellent physician follow up, I became my own expert in managing how to work with CHF.  Cardiac rehab helped me improve my heart strength.

The fall of 2019 was the time I had the tissue expanders exchanged for silicone implants.  Since then, I have had continued follow up with doctors and occasionally a few scans to monitor my health.  The spring of 2021 changed my trajectory.  A lung spot was found and monitored for changes as the months went by. 

By fall, it was determined that the spot was enlarged considerably.

The 21^st Century Cures Act

In early November 2021, I had a scan for which the results came to my electronic medical record, known as My Chart, on a Sunday morning.  Like many patients today, I saw the My Chart results through my online patient portal, with no benefit of a conversation with a doctor first.  At that time, I had no idea about the part of the recently implemented 21^st Century Cures Act of 2016 that, by law, automatically dumps all labs and radiology information into the patient’s chart.  While I suspect this act was written with the best of intentions, the unintended consequences had a devastating effect on me.

Emotionally, I had the equivalent of a swift kick in the gut as the results of my scan said I had cancer in the lung that was either lung cancer or metastatic breast cancer.  It was horrible to see this result, but I finally was able to locate a medical friend of mine who helped decrease my anxiety, which was at a peak level!  She contacted several people to help support me but also informed me about the “Cures Rules.”  In my opinion, there needs to be not only revisions but a great deal more education to both healthcare providers and patients in order to lessen a potential devastating, surprise impact. 

The follow-up doctors I spoke with told me that this is a federal law and that there was nothing they could do about it – it was a fait accompli.  One doctor told me that they can get “dinged” by regulators if they put a hold on a patient’s information not going directly into the chart.  Everyone seemed to agree that this new law was very problematic, but no one knew what to do about it or even wanted to attempt to do something about it.

Having it my way on the Cures Rules

As November progressed, I saw the lung surgeon and was now scheduled to have surgery in early December.  In preparation for the surgery, I contacted the lung surgeon’s office and told them I did not want the pathology report to go onto my chart for me to see until I spoke with the surgeon.  The administrators and health care practitioners who answered the phone said that there was nothing they could do to put a hold on the pathology report.  I pressed very hard on the phone and told them they definitely could as I had researched and found out it was possible.

Finally, I was assured that a hold would be put on the pathology report until the doctor spoke to me about it.  I credit my lung surgeon with great kindness as he knew I was highly anxious.

Surgery

The surgery was a lung wedge resection which was incredibly painful.  I spent a week in the ICU but had the absolute best of care.  My healthcare needs were attended to in an exemplary manner.  After ten days, the lung surgeon called me at home and asked if I was ready to hear the pathology report.  The report wasn’t good news, but he delivered it kindly and compassionately.  I am grateful to him for this.

Pathology reports, radiology reports and abnormal lab values, deposited in the patient chart may read like a foreign language to many, including myself, and I’m a nurse.  It is far too easy to read into things that you don’t completely understand.  This can cause unnecessary fear and anxiety in many cases.  The value of a physician’s interpretation for the specifics of a patient’s situation cannot be understated.

Bad news

Sadly, my pathology report said that my breast cancer is metastatic and the triple negative type.  This means it is HR and PR and HER2 negative.   The cancer I have had morphed from HR PR positive and HER2 negative. These letters that identify the type of breast cancer are hormone- and protein-related.  Positive letters mean that hormone related treatments may be possible.  Hormone treatments weren’t helpful for my situation.  A triple negative breast cancer diagnosis is one with the least number of useful treatments, especially since mine was metastatic.

As I continued to recuperate from my lung surgery, I met with my oncologist in January 2022.  My oncologist is a wonderful person and quite kind, but he also had to tell me very bad news.  Due to the extensive testing, they did on my tumor, I didn’t qualify for immunotherapy at all and the chemo that they have for some triple negative wasn’t going to be useful for me.  My husband and I were devastated.  The game plan was then to monitor me with occasional scans and in-person visits. 

Cures Rules education needed

When I had recuperated enough, I sent an email to the head of the hospital, where I had lung surgery, thanking him for the excellent care I had received but also telling him about the awful experience I had with finding out the results of the November scan by surprise.  I tactfully submitted to him that there is an urgent need for further education for healthcare practitioners regarding the Cures Rules to help patients avoid receiving bad news by surprise.  He told me he sent my email along to another person in the system who is working towards making improvements.

In May 2022, we rejoiced that the scan I had showed no signs of cancer.  That joy was diminished in September by the next scan that showed it had returned in the lung.  I asked for a needle biopsy this time to see if somehow the cancer might have morphed again. 

Unfortunately, the results of the biopsy were the same as the original path report from December 2021. 

As a cancer patient, I have had to self-advocate and have spent a lot of time trying to see what new things might be out there to help me.  I found an article that the FDA had approved a drug called Enhertu in August 2022 for patients with HER2 low.  In discussing this with my oncologist, he gave me the new diagnosis of HER 2 low.  HER2 is measured as a 1, 2, or 3.  One is negative, three is positive and level 2 is considered low.  Lucky me, I now have a new diagnosis of HER 2 low.

Initially I received a drug called Xeloda for a while during the time we also were reevaluating my cardiac status to be sure I could handle the Enhertu.  Xeloda was stopped as it wasn’t decreasing my cancer.  Fortunately, my cardiac status was so improved that the Enhertu was now a go.

More complications, more treatments

Malignant pleural effusion was the next complication in December 2022.  I had a large amount of fluid drained and spent a few days in a hospital.  My second trip to a hospital was in January 2023 where I had a pleural catheter placed due to increasing pleural fluid.  Since then, I have had over six liters of pleural fluid drained.  My husband was trained in how to do this and has continued to do a superb job.

Enhertu began in January, and I tolerated it well.  I’ve been fortunate so far in that I have been able to manage the varied side effects.  That is not to say that it has been easy.  Some days are very challenging because my energy level isn’t always very strong.

I am getting ready to have my third dose of Enhertu at the end of February.  This treatment will be every three weeks for the rest of my life or until the cancer progresses or the side effects are unbearable.  So far, I’m doing pretty good. 

Being grateful helps

Support comes from many people and directions for me.  I have a loving family who make many efforts to support both myself and their father.  Grandkids are a great treat to have a visit from.  My extended family and friends send prayers, notes, email jokes and texts often.  I pray a lot.

Luckily, I still have my hair!  Hey, if you haven’t lost your hair before you may not realize how good it feels to still have it! 

Thankfully, I can still take care of all my activities of daily living.  My appetite is good and yes, I still am very careful about watching my sodium intake.  No need to tempt a hospitalization for CHF.

Finding daily joy

I do the best I can each day to try to find joy in something.  We have a lot of birds in our back yard.  The blue birds are my favorite.  Occasionally we are treated to a visit by a hawk and of course the birds scatter quickly!  Various woodpeckers are also a pleasure to watch.

Last winter, I didn’t think I would still be here, yet here I am.  Now I am working on short term goals such as going to a bed and breakfast for relaxation and distraction.  My crocheting and crafting projects are ongoing for fun. Cooking new recipes is educational.  Lunch with friends is part of my calendar besides multiple healthcare appointments. Listening to music is relaxing for me.

I’ve completed all my end-of-life paperwork, including a Five Wishes advance directive and a MOLST, since I thought my days were short.  Now, things have changed.  My thoughts regarding what I want and don’t want in the end have not changed.  I still know that my Stage 4 breast cancer may take my life, but the game plan has been altered and I am adjusting my thinking accordingly. 

My job is not complete apparently.  A dear friend reminded me that God has things in store for me.  I often ask Him what He wants but I realize that sometimes the lesson may be for someone other than me.  I remain grateful.

God’s will be done.

(Leslie Piet is a former nurse and former member of the Aging with Dignity Board of Directors.  She emphasizes that her story does not constitute medical advice and should not be construed as such.  She strongly recommends that people talk with their doctors about their own needs and situations.)