Chapter Thirteen: Important and Discouraging

Chapter Thirteen: Important and Discouraging

How many books have you read that begin with Chapter 13? I assume this is probably the first. And although I am not superstitious, the fact that this is number thirteen did not escape my attention. Chronologically this chapter should be next to last in the book, but I am putting it first to make an important and discouraging point about the treatment I received for my particular diagnosis of breast cancer

In April of 2015, I noticed a slight thickening in my reconstructed breast at the topside of the breast near the breastbone. I knew it was statistically possible to get a local recurrence in a reconstructed breast since surgeons estimate they only get 97-99 percent of the breast tissue when they do a mastectomy. I went to my internist. She told me it didn’t seem like a lump but referred me to a surgeon. The surgeon said, “I’m trying very hard to be concerned about this, but it’s a reconstructed breast and it’s been nineteen years since your cancer. I suggest we wait a few months and see if there is a change and if there is, we can do some imaging them. However, if you feel a nagging concern, let’s talk again.” Unfortunately, I kind of forgot about it.

By October, a palpable lump blossomed in what seemed overnight. I went back to the surgeon. She sent me for an ultrasound. The radiologist did a biopsy and told me “It didn’t look good.” A few days later the surgeon called and said it was malignant. I called Dr. Buys, my oncologist, and left a message on Friday. She called me on Saturday and asked me to be in her office Monday morning. As I write this, I’ve had two lumpectomies because the first didn’t get clean margins, four rounds of chemotherapy, and thirty radiation treatments. Lightening struck me twice at ages fifty-two and seventy-one.

A little family history: My sister, who is two years younger than I, was diagnosed with breast cancer just a few weeks passed her 53^rd birthday. At age sixty-five she had a recurrence and had a mastectomy and TRAM flap reconstruction. She has not had to have chemo. My brother, who is fourteen years younger than I, was diagnosed just before his 52^nd birthday with advanced prostate cancer. He passed away at age 56. Fortunately my other five siblings have made it safely past age fifty-one to fifty-three.

Now here is the reason I put Chapter Thirteen first. I want you to know the most common response I received when friends heard about my second breast cancer diagnosis. Almost without exception they would say something like: “Oh, you are fortunate that there have been so many medical advances since your first diagnosis.” Then they would either tell me about someone they knew who had a simple fix for his or her cancer or about an article they read about a scientific breakthrough. The discouraging truth is that I received basically the same treatments nineteen years apart.

What I want you to know is not to bank on medical advancements. You have heard of the three key words in real estate—location, location, location. With cancer the three key words are prevention, prevention, prevention. Suggestions follow throughout the book.

Although the media is constantly touting this or that innovation that will save lives, for my diagnosis not much changed in the actual treatment. It was still slash (surgery): I had to have two both times. Poison (chemotherapy): I was offered the very same as nineteen years before—Cytoxan and Adriamycin or Cytoxan and Taxotere. Taxotere had proven to be slightly less hard on the body while equally effective. However, about six-percent of Taxotere patients have permanent hair loss but Adriamycin is harder on the heart. And burn (radiation): I didn’t have radiation the first time because the protocol at that time was if you had a mastectomy, radiation was unnecessary. The graph below shows my treatments then and now.

                     1996-97                                                                2015-16

Surgery: excision and mastectomy	Surgery: two lumpectomies
Chemotherapy: 4 rounds of Adriamycin and Cytoxan	Chemotherapy: 4 rounds of Cytoxan and Taxotere
No radiation	Radiation: 6 weeks, 5 days a week
Neupogen injections for 5 days following all 4 chemotherapy rounds to stimulate white blood count and to decrease the chance of infection.	Neulasta injection after each chemotherapy treatment to stimulate white blood count and to decrease the chance of infection.
Tamoxifen for five years	Tamoxifen or other hormonal treatment for five years

The aspect that has improved in the nineteen years between diagnoses is in managing the side effects.

Nineteen years ago, nothing was prescribed before chemotherapy. This time the day before, the day of, and the day after—I took dexamethasone, a steroid, which gave me a boost of energy but every drug has side effects. I experienced fluid retention and immediate constipation.

Nineteen years ago, the nausea was managed with Compazine and the new drug Zofran that cost $25 a pill. Compazine didn’t help much the first time, and, no surprise, it didn’t help much nineteen years later. Zofran did minimize the nausea but has it’s own side effects of lightheadedness and severe constipation. One good thing about Zofran the second time around was the cost had changed from twenty-five dollars a pill to sixty pills for eight dollars. I also found relief from more mild nausea by sucking on candied ginger root or by drinking ginger tea.

I managed the constipation with the laxative Senna and Reglan. The side effects of the Reglan and Senna were diarrhea and rectal bleeding, but they did help.

For the bone and muscle pain associated with Neupogen, twenty years ago I took Percocet when the pain was unmanageable and then moved to Ibuprofen and Tylenol. It was rough. The second time, Oxycodone was prescribed, but I only took it a few times. Fortunately, someone discovered that one Claritin-24 hour and a couple of Aleve each day relieved the pain better than Oxycodone. This was a major change in my comfort, especially since I received the Neulasta after every chemo treatment and not just at the end like I did with the Neupogen.

I credit the Neulasta after every chemo treatment with helping my overall health. Nineteen years ago, the chemotherapy took me to what I felt was the brink of survival. I lost twenty pounds. This time I only lost ten. The first time the chemo caused hundreds of head sores. The second time around I did not get many head sores but lots of mouth sores. Hair loss happened both times. This time, however, I kept some eyebrows and eyelashes. I experienced depression both times. To counteract the depression twenty years ago I was prescribed Amitriptyline. This time Dr. Buys prescribed Celexa. Both drugs have side effects.

I carefully documented my first cancer experience, as you will see as you read on, and I anticipated I would do the same for the recurrence. But I quickly realized, it was déjà vu, kind of like Groundhog Day. There was no need to write it twice. Except for the changes listed above, everything was pretty much a repeat.

I hope you find the book filled with useful ideas to help you or someone you care about progress through your/their cancer diagnosis, treatment, and recovery.

Now, on to Chapter One!