Profile of a woman dying of breast cancer

·         I am every woman. There are parts of me that are you.
·         I love my family more than anything and they love me. Or so they say.
·         I am neither young nor old. I am unlikely to ever see retirement age and will never use my retirement savings.
·         I am neither rich nor poor, but closer to rich than poor due to a lifetime of working and saving.
·         I am 5 ft. 6 in. and have never weighed more than 115 lbs. except when I was pregnant. After each pregnancy I was back at 115 lbs. by my 6-week checkup.
·         I had four normal pregnancies and gave natural birth to four healthy children. I breastfed each baby for 18 months.
·         I have never smoked and drank very little alcohol (about a glass a month) and none in the last two decades.
·         I never went on the birth control pill because there was a study published in the 1980s that it was associated with breast cancer. See above for four children.
·         I have been a vegetarian almost all my life and a vegan for the last decade.
·         I have run and walked 50 – 60 miles a week almost every week since I was in high school, even up to the day my babies were born and a few days later.
·         Most of my shoes are running shoes.
·         I floss my teeth twice a day.
·         I am a terrible dancer and cannot sing in tune.
·         I have no sense of direction and will get lost anywhere. Getting lost is my special skill.
·         I cannot draw and am in awe of all who can.
·         I’m allergic to anti-cholinergics and dairy.
·         I have been prepared to die for my beliefs.
·         I care very much for the mentally ill. I give a dollar to all homeless people who ask. I keep a stack of dollar bills for this purpose.
·         My students call me the department mom.
·         I am a card carrying member of the ACLU. Although I don’t support all their causes, I feel that someone should.
·         I can hold very hot things and I stop watches that I try to wear.
·         I have hundreds of thousands of photographs of my family and trips.
·         I have had four different first languages. I learn and forget languages very easily.
·         I have traveled a lot.
·         I have two master’s degrees and a PhD. I am a scientist.
·         I have had three completely different careers.
·         I love JK Rowling, Jane Austen and Alexander McCall Smith.
·         I read about one book a week.
·         I covered up my radiation tattoos with tattoos of a four-leaf clover (my four children), a stylized deathly hallows, an owl and a dragon.
·         I cry easily when you tell me a sad story. I faint when I see someone in pain.
·         I hate scary movies.
·         I am very loyal and find betrayal unforgivable. I can hold a grudge for a long time.
·         I laugh often and loudly to the embarrassment of my children.
·         I am dying even though I did everything I knew to prevent this disease and then its recurrence.

My wish list for the NIH

Over the past four decades I have seen a lot of really unhelpful research on breast cancer. And let’s face it, we really have not got very far. Recently, I have been asking why grant reviewers have not demanded more useful research, only to find that I am late to the party.

There was an interesting article at http://www.wnyc.org/story/when-patients-set-sciences-research-agenda-who-loses/ in which patients set the agenda for breast cancer research instead of the individual researcher with an idea. Yes.

Here is MY wish list for the battle. And it is a battle. However, when I die of this disease, please do not say that I lost my battle. Every time a woman or man dies of breast cancer, we all lose a battle. It is only my list but we are in this together and hiding behind pink ribbons does not stop the wives, mothers, sisters and daughters, husbands, fathers, brothers and sons from being mowed down.

1.       Funding. The NIH could open a fund for breast cancer research and everyone who wants to donate could donate directly. The NIH already hires staff to oversee grant funding so they will have no incentive to raise funds for the sole purpose of maintaining their organization. Let’s boycott pinkwash. They had a chance but used our money to tie pretty pink ribbons in the name of awareness while women and men died.

2.       Prevention. Prevention would be ideal. We know that longevity runs in families. What is it about some people that makes them less susceptible to cancer? What if we study the healthy to find out why their cells never turn cancerous? How can we use that information to prevent our errant cells from turning on us? In fact, many of us are our own labs. If breast cancer only develops in one breast, what caused the mutation in DNA in that breast and not the other?

3.       Treatment. Why is the current treatment not working very well? In fact, how well is it working? We have not made a lot of progress in terms of survival and it would be good to know why.

4.       Metastases. Why do some cancers progress and others don’t? Let’s eliminate talk of that five-year survival window. Many of us easily make it. It is meaningless and artificial. Let’s study every patient from diagnosis to death and record recurrence if and when it happens. Let’s examine what is working for long-term survivors so that every patient can be a long-term survivor.

5.       Correlations. A correlation is an association between two events such as eating red meat and breast cancer (unproven) and is reported using Relative Risk (RR). Correlation does not mean causation. Some studies showed an association, but when you combine all the data from all the studies, the effect often disappears. One of the most robust associations is between smoking and lung cancer. If you smoke, you are more likely to get lung cancer than if you do not. However, not all who get lung cancer smoke and not all smokers get lung cancer. In fact, the lifetime chance of getting lung cancer if you smoke is only between 15 and 25% (depends on your source) of all smokers. Correlation has a number of flaws so let’s see no more correlations. It is especially important to disregard correlations that are drawn from a patient’s memory. A study from 1993 described how patients’ memories of what they ate was altered after the diagnosis of breast cancer. In an earlier survey they had described their diets. After the breast cancer diagnosis, their memory of what they had eaten included more fat than the original survey. In other words, the diagnosis changed their memories. There is a good explanation by Charles Wheelan at http://thegovlab.org/garbage-in-garbage-out-or-how-to-lie-with-bad-data/ If you are still not convinced that correlations are not helpful, you can find some really funny ones at http://fatchicksings.com/2014/05/12/does-eating-margarine-cause-divorce-correlation-is-not-causation/

6.       Central database. The power of 21^st Century computing is not being exploited. The entire genome (all the genes of a cell) of all breast cancer patients, their diet and exercise habits as well as their treatment, side effects and recurrence could be kept in a central store and computers can sift out the common elements. I am now in a clinical trial and the trial sponsors  demand a lot of my blood. The results are for their clinical trial alone. Now, imagine if that amount of data could be pooled for every patient.  Data could be input by health care workers and patients. We could sort out common side effects that some doctors refuse to acknowledge even exist.

7.       Grants would be prioritized so that applied research now gets top priority. Basic research has led the field and has resulted in a theoretical understanding of breast cancer, but now we have reached a point where the research must be applied to saving lives. We cannot afford to keep waiting for the theory to lead to changes in far future treatments. We need treatments now, and we need it from researchers as well as biotech companies.

8.       Stop funding unhelpful research. If the research does not save lives, or it requires leaps in logic, or is so theoretical that it cannot be implemented, it is not helpful. Every study needs to answer the question: Why is this important? Let’s move on from the research flavor of the month.

9.       Every research trial could be registered with the NIH before it even starts, and not only the ones funded by the NIH. That way, if there are a thousand studies on say, the use of soy, but only five showed significant effects then we can examine the effects of random chance.   According to Charles Wheelen, some journals already require this. http://thegovlab.org/garbage-in-garbage-out-or-how-to-lie-with-bad-data/

10.   One more selfish thing. The clinical trial that I am on has a side effect of diarrhea. Chemo left me unable to tolerate anti-cholinergics. All that is left for me is the absurdly disgusting tincture of opium. Why am I controlling side effects with a drug that is thousands of years old? I’m not much of a whiner. I get up in the morning, run, do chores, be a wife and mother and go to work no matter how sick I feel, but tincture of opium brings out the 2-year-old in me.

·         2-year-old me: I don’t want to take it. It tastes terrible.

·         Logical me: You have to take it to stop the diarrhea.

·         2-year-old me: But the taste does not go away for a long time.

·         Logical me: But the diarrhea will not stop if you don’t take it.

·         2-year-old me: What’s the point? I’ll just have to take it again in 4 hours

·         Logical me: Your diarrhea will be more-or-less controlled for 4 hours

·         2-year-old me: But it won’t go away

·         Logical me: It will get worse if you don’t take the drug

·         2-year-old me: No, maybe it will stop now

·         Logical me: You know it won’t.

And you won’t believe how long this can go on.

 

 

 

 

 

 

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.

http://breastcasym.org/50-years-breast-cancer-dramatic-progress-treatment-based-improved-understanding-biology

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.