Saturday, September 6, 2014

A tale of two breast cancers

MLN0128 Clinical Trial update

Cycle 6, week 1

I’m still doing well. Blood tests are all in normal range. I have the same old side effects and still trying to live life fully. In August, I went to two cons and took a trip to Las Vegas. This month, I’m going to a conference in Tampa. I still work.
A tale of two breast cancers

Or what progress?
Tweet that claimed: There has been a dramatic improvement in breast cancer treatment over the past 50 years. Really? Not from where I am.

Let’s examine the last 40 years with an anecdote.
In 1966, my mother was diagnosed with breast cancer. We lived in rural Africa.

I was diagnosed in 2005. I lived in the USA.
Mom: Felt a lump, admitted to hospital, biopsied under general anesthesia and radical mastectomy performed without her even coming out of the anesthesia. She was asked whether she wanted to get the biopsy results first or have an immediate mastectomy if the biopsy was positive. Having the entire procedure done together was her choice.

Me: I felt a lump, went to see the NP, and sent for mammogram the next day. The mammogram was clear so I was sent home. I went back five times over the next 10 months complaining that I was ill, but kept being told that the mammogram was clear so I had a fibroadenoma. Eventually, 10 months later, the lump had grown so large, there was puckering and another mammogram and breast MRI was performed. This was followed by a biopsy. The surgeon called 3 nerve-wracking days later to tell me that it was positive for breast cancer.

Mom: After surgery, she stayed in hospital for 2 weeks getting advice and care from Reach to Recovery, doctors, nurses and psychologists.
Me: I had an excruciating lymph node biopsy and breast conserving surgery two weeks later. The two-week time schedule was for the surgeon’s schedule, not my own. I spent one night in hospital, sharing a ward with a patient with dementia who had her foot amputated.
Mom: She was given as much sick leave as she needed. Her insurance paid everything.

 Me: I needed aggressive treatment and lost my job. At the time, my husband and I were commuting so we sold our house to pay medical bills, packed up our children, and moved to a large urban area where my husband worked and the insurance would provide better coverage.
Mom: After surgery, she had aggressive radiation that burned one side of her chest. The dark scar was there until she died.
Me: I had 18 weeks of chemotherapy with all the consequences of aggressive chemo. For 12 weeks, I barely moved from the bathroom floor. It goes without saying that I lost my hair and suffered the usual. Chemo was followed by 6 weeks of radiation therapy that burned one side of my chest. There was no lasting scar but the radiation area has been covered in a rash ever since.
Mom: There was no follow up care after the radiation treatment.
Me: Radiation was followed by two years of tamoxifen, one year of   aromasin and four years of femara. I saw the oncologist every three months then every six months. I had endless blood work.
Mom: She was left with poor strength in one arm and could not lift a gallon of milk with that side. She also had severe lymphedema, for which there was very little that anyone could do. She used to raise her arm above her head whenever she got the chance. She often told people that the lymphedema was the only reminder that she had ever had breast cancer.
Me: I was left with poor strength in one arm and could not lift a gallon of milk with that side. Due to the surgery, I could no longer raise my arm above my head without it pulling. I experienced joint pain and a skipped heart beat (from the hormone treatment), and permanent neuropathy and fatigue (from the chemo). My nails continued to lift off the nail bed. I developed a permanent severe anticholinergic allergy and lactose intolerance from the chemo. Reconstruction was not an option as elective surgery was considered too risky.
Mom: Continued to exercise after treatment. She loved to go on long walks.

Me: Continued to exercise after treatment. I love to run and walk.
Mom: She did not go into menopause.
Me: Chemopause started with the second chemo and was complete two years after treatment ended.
Mom: She wore a bra with a prosthesis.
Me: I was unable to wear a bra after treatment. The surgery and radiation had left me with two different sized and shaped breasts. A bra cut into me so I started wearing camisoles.
Mom: No later effects on her teeth and bones.

Me: Don’t even get me started. Osteoporosis and osteopenia were immediate consequences. One broken rib and five dental crowns and an implant have followed treatment.
Mom: She went back to her regular full-time job three months later and worked until she died in 1975.
Me: I have taken a job where I can be flexible with my hours.

Mom: About eight years after her initial diagnosis, she started coughing and the cough would not get better. She had a chest x-ray and they told her she had a “chronic” cough. No one ever said anything about metastases but we all suspected that. She never talked about it.
Me: About eight years after my initial diagnosis, my tumor markers rose and I had a scan. The oncologist called me two days later to tell me that I had metastasis to the bone.
Mom: She died less than a year after the cough started, in hospital. She spent only one night in the hospital because she needed oxygen to help her breathe.
Me: I have been stage IV for 17 months. I am on my second treatment protocol, a clinical trial. I am told every small victory or progression. Each day I cope with diarrhea, mouth ulcers, nausea and vomiting. I will work until I have to go on disability. I take tincture of opium to control the diarrhea. Ironically, this ancient drug is my only option.
How much progress have we really made in 40 years?

According to the National Cancer Institute:
1975: 31.4 per 100,000 women died of breast cancer.
Now: 21.5 per 100,000 women will die of breast cancer this year.
1975: The 5-year survival rate was 75.2%
Now: The 5-year survival rate is 89.2%
1975: The proportion of those who died to those who were diagnosed with breast cancer in one year was about 30%.
Now: The proportion of those who die to those who are diagnosed with breast cancer is about 17%.
However, it still may be premature for the self-congratulation on progress. Although women are living longer after a breast cancer diagnosis, the 30% number for those who will die of the disease has not budged. It is just taking longer. Women are being diagnosed earlier which might account for the longer span. It is not because they are surviving breast cancer, simply that they know about it sooner and so perhaps taking longer to die.
1975: Diagnosed at advanced stage (III or IV) 30% (Louwman et al., 2008 - Netherlands)
Now: Diagnosed at advanced stage (III or IV) 13% (Louwman et al., 2008 - Netherlands)
If you look at the graphs of age at diagnosis and year, you see that more women are being diagnosed with breast cancer now than in 1975 for every age group except the 85+ age group. In other words, a woman diagnosed at age 85 or older is simply unlikely to survive five years and there were more women in that age group in 1975 than there are now.

Don’t get me wrong. I’m overwhelming grateful to the biotech companies for their tireless work in delivering new drugs. They are giving me more time to die. However, the time is being measured in weeks and months, not years.
I think we have made progress in tracking the disease but not treating it. It is not the time to be complacent. True progress is unlikely to be in time for those of us with stage IV.



















1 comment:

  1. A very special set of parallels drawn here - thank you for sharing these two tales...

    Clearly, the advances in medicine, oncology, and breast cancer in particular, have been significant.

    However, "progress" lies in the eye of the beholder. Nobody cares to hear about the wonders of penicillin when they're down with an infection. Much more than that, statistics are great but it's ourselves and our loved ones that we care about - who can blame us for this?

    A "cure" is far, far away by most counts. However, we should ignore the impact on quality of life.
    And your experience is an upsetting reminder: there's more that needs to be done.

    Let's hope that the trial you're on will be one of those we'll be talking about for a while. And that you'll emerge as one of those early winners.

    Take care.