President's Message - October 2020
by Hon. Lisa Margaret Smith
October is Breast Cancer Awareness Month, and it is WWBA’s tradition to publish its October newsletter in pink in honor of Breast Cancer Awareness. It is also Domestic Violence Awareness Month, the color of which is lavender, and at WWBA we also honor the crucial importance of efforts to combat Domestic Violence by including lavender in our newsletter colors. Please remember to wear pink and lavender ribbons this month to honor those who fight both of these scourges, and those who have been lost to them. Elsewhere in this edition is an article about innovations in Westchester County to address Domestic Violence. This President’s Message focuses on Breast Cancer.
Many of us have been personally touched by breast cancer, and most of us have had someone in our lives touched by breast cancer. I would like to share with each of you my personal story with this disease, though you might want to skip to the end if you are squeamish. Mine is not a pretty story, but for the approximately 12 percent of you, as American women, who will face invasive breast cancer in your lifetime, this may help you to get through your own travails, and to feel less alone.
I was diligent about getting a mammogram every year since I was 35, except when I was pregnant or breast-feeding, and, like most women I had occasional scares as a result of cysts or other abnormalities, but no real issues. In 2001, when I was 46, I had thyroid cancer, resulting in a thyroidectomy and radioactive thyroid treatment, but other than taking thyroid replacement medication daily, I never had any problems relating to the thyroid cancer.
In the spring of 2012, at the age of 57, my experience changed when I was diagnosed with ductal carcinoma in situ, known as DCIS, in one breast. In other words, it was cancer. Initially the diagnosis from each doctor I consulted (I consulted three) was that this was a minor concern, that DCIS is non-invasive and that a lumpectomy would take care of the problem. Then, a further analysis of my mammograms resulted in a finding that there was also DCIS in the other breast. I ended up with three lumpectomies, and none of the margins were clear, meaning that the doctors had not been able to remove all of the cancer, in either breast. By that time I was also quite physically misshapen as a result of the unsuccessful surgeries, and, I admit, I was frightened. For the first time my surgeon recommended a bilateral mastectomy, and my fear blossomed into terror. I was alone when I left the doctor’s office, and so upset that I nearly had a car accident – my recommendation is that you do not go to an important appointment alone, because you need someone else to hear and remember what is being said, to ask questions, and to allow you to lean on them if the news is bad.
The medical recommendation in my case was unanimous – I should undergo a complete bilateral mastectomy, with removal of any lymph nodes that might have cancer. So, in August 2012, I had the surgery, including deip flap reconstruction using my own abdominal tissue to reconstruct my breasts without the use of implants. The tested lymph nodes were clear of cancer. The surgery lasted for twelve hours; when I awoke in recovery I was, for lack of a better description, tightly wrapped in what seemed like bubble wrap, and I was unable to move. The blood vessels between my chest and the newly placed tissue had been reconstructed to allow for blood flow, but the flow had to be checked nearly every hour with a sphygmometer to make sure that the reconstructed vessels continued to work. Without the blood flow the tissue would die and would have to be removed; the surgical incision was left open so that the blood flow could be measured and so, if any reconstructed blood vessel failed, an immediate emergency surgery could occur to correct the problem without having to reopen the original incision. After almost 24 confusing and extremely painful hours in recovery – where a woman screamed incessantly from pain – I was removed to the ICU, because of the need for constant monitoring of the blood flow. I am no longer sure if I was in the ICU for one day or two, but eventually I was moved to the ward, still wrapped in bubble wrap, and still having constant monitoring of the blood flow.
About a week after the surgery I was allowed to be freed from the cocoon I was in, and was allowed to get up and move around. I did require a second surgery to close the incision that had been left open in order to monitor the blood flow. In a few more days I was allowed to go home, where I had regular attention from a visiting nurse and a physical therapist. I had been told that I should plan to stay home for eight to ten weeks after the surgery, and I had grand ideas of using the time to sort my boxes of old photographs, clean out the junk drawers, and otherwise find useful things to do. In actual fact, I was not able to do much of anything. This surgery was unlike anything I had experienced, and took a great deal out of me, physically and emotionally. The boxes of photos and the junk drawers are still untouched to this day.
A week or so after getting home the visiting nurse noticed that the incision was red and swollen, and a call to the plastic surgeon who had done the reconstruction resulted in a quick trip to his office, a prescription for high dose antibiotics, and in another day a return to the hospital for a third surgery (not counting the lumpectomies) to be certain the infection was contained. The operating room on that occasion was jampacked, because this was a teaching hospital, and very few of the interns and residents had ever seen what a reconstruction looked like a week or more after the patient went home. The surgery went well, the infection was tamed, a few more days of IV antibiotics and I was home again.
Anyone who has had any reconstruction knows that there are follow-up surgeries and procedures, including tattooing to create areolas around newly created nipples. Every doctor who looks at my reconstruction marvels at the high quality of my plastic surgeon’s work, but when I look at myself I just see all the scars and a shape that is not my own. Another consequence of my surgery that I had not known would happen is that I have lost most sensation from my abdomen to the top of my breasts. Some has returned, but most has not.
There were tests, the tissue was oncotyped, I had DNA analysis, I learned that I did not have a breast cancer gene. The cancer was estrogen positive, meaning that if there were any tiny cells of the cancer remaining, estrogen would encourage growth, so I was prescribed an estrogen blocking drug for five years, which I took religiously. I was very fortunate, others have suffered severe side effects from similar drugs, but my only side effect, discovered during a bone density scan, was that the drug was leaching calcium from my bones, so I became osteopenic, which can be a precursor to osteoporosis. I did not have chemotherapy or radiation. After five years further analysis led my doctors to recommend that I stop taking the estrogen blocker, because my risk of recurrence was quite low, with or without the drug. As a result, my bones strengthened, and the doctors determined that I could be considered cancer free.
Though considered cancer free, I did not stop seeing my doctors, usually it was just an annual visit to a nurse practitioner. At one point I became concerned about a small lump in my reconstructed breast tissue, so I returned to my breast surgeon. She biopsied the lump, and, as she had suspected, it was an accumulation of fat tissue resulting from the reconstruction. I also pointed to a raised area above my breasts, right next to my breastbone, that was oval in shape, and just a protruding disc, not a lump like the other one. It did not hurt, and over time it had not seemed to grow. My surgeon palpated it, and she then dismissed it, saying it was nothing to worry about. Unfortunately, she was wrong.
In May of 2020, after postponing a doctor’s appointment because of the coronavirus pandemic, I saw my internist of 30 plus years for something quite unrelated. While I was there I pointed out this raised area, and asked if he thought I should be concerned. It had not grown markedly in the year or so since I had shown it to my breast surgeon, nor did it hurt, but it still concerned me. My internist looked at it, and said “In light of your history let’s get it checked.”
First he sent me for an ultrasound. I was subsequently told that on the first look the radiologist did not see anything, but that he asked the ultrasound operator to do further scans, because he knew my internist would likely have had a reason to send me there. On further review he felt the tissue looked suspicious. So my internist sent me for a needle biopsy. The needle biopsy also revealed suspicious cells, but there was not enough tissue for a firm diagnosis. So I went for a core biopsy, with additional tissue taken from the raised area, and also from a lymph node near my underarm. This was it. The tissue was diagnosed as metastatic breast cancer, also known as stage four. It is invasive breast cancer.
Further tests showed it is triple negative, meaning that unlike my prior breast cancer, this was not estrogen positive. Triple negative stage four breast cancer is considered very aggressive. I then went to an oncologist (I am going to a different hospital and cancer center than the one that failed to diagnose this cancer), who ordered a petscan to determine the extent of the spread. The petscan seemed to indicate likely spread in my thoracic spine, subsequently confirmed by an MRI and a bone biopsy. Finally, in late June, I started my first round of chemotherapy. The oncologist told me that the cancer is incurable, but treatable, and that it was not yet time to put my affairs in order.
So far I am lucky. I am taking oral chemotherapy medication, each cycle is three weeks long, during the first two weeks I take four pills in the morning and four more in the evening, and then I have a week off. Every six weeks I have an injection intended to strengthen my bones to prevent further spread. I have not had terrible side effects. I have a funny metallic taste in my mouth pretty much all the time, and the skin on my fingers has sloughed off. I am also somewhat tired, but I have been able to work, and to continue my duties with WWBA. I have not had nausea or diarrhea, two of the most likely side effects (in fact, because I am quite contrary, I have had to deal with constipation rather than diarrhea). I do suffer from anxiety, though of course the pandemic, solitude, and preparing for retirement all add to that (by the way, retirement was planned a full year ago and was not the result of this diagnosis). I have not had medication by infusion, or faced losing my hair, though I know that if the current medication regime is not successful I may have to move to that. I will have a scan in October that should reveal whether the cancer is responding to this medication - the goal is to stop the spread of the cancer without having terrible side effects. Ideal would be if it causes the cancer to regress - but the truth is, it will not go away. I will not beat this. I will delay it, and I will live every day until I no longer can, and that day may be many years away, but I do not pretend that it will disappear. I am trying to be both an optimist and a realist, and to keep putting one foot in front of the other. In that, I have a victory.
Dear friends, I am sharing this with you not because I want your pity. As of now I do not need meals delivered and I am capable of driving; my treatment is not disabling. I will say that prayers are appreciated, and positive vibes if you are more comfortable with that. I do tell you this story because I want each of you who has gone through this challenge, or who is going through this challenge, or who will go through this challenge, to know that you are not alone. This message also goes to our male members and friends, because breast cancer also affects men, as patients, as caregivers, as spouses, as sons, as fathers, as brothers, and as friends. If you are afraid, or if you need a friend to go with you to the doctor, or if you just need to talk, whether or not you have been diagnosed with breast cancer, please reach out to me at email@example.com.
If you are moved to try to do something about this horrible disease, then please donate to the American Cancer Society, through Team Orbach, for our Breast Cancer Walk, scheduled virtually for October 18, 2020. I assure you that I will be walking, in my own neighborhood, and wearing a mask. You can find Team Orbach to donate or to sign up to walk, or both, at https://secure.acsevents.org/site/STR?fr_id=97723&pg=team&team_id=2554957, or sign in on the weekly WWBA events email.
If you are unable to donate, then please join our team and walk. Together we can beat this. Please help us do it sooner, rather than later.