The riddle of the cancer relapse

Cancer relapse or the 'Cancer Sleeper Cell' are oh-so-reassuring (NOT!). I read this article and paid attention to it - through all five pages. So they are now trying to figure out if cancer has its own stem cells. But they haven't quite figured it out yet. They are trying. They have been working in this area since at least 1974 - so in 36+ years they still aren't sure.

On one level its quite interesting and almost exciting that they are looking at cancer down at the cell level to see which ones are stem cells - capable of regenerating themselves. They are this deep into cancer biology that they are looking at it cell by cell, detail by detail. They can define different kinds of cells and know which ones they should treat differently.

On the other hand, its been more than 36 years so this must be quite a conundrum if it is yet to be resolved. Why is it so complicated? I don't know. They, meaning the researchers, don't know. Yet. Even going back to the ancient Greeks, they aren't sure. Is cancer what the Greeks called 'black bile'? Or is its secret hidden in the idea of a cancer stem cell?

All of this adds up to the cancer relapse riddle. Why do some relapse or recur and others not? Did the combination of surgery, chemotherapy, radiation, and hormone therapy get rid of every cancer cell in my body? They aren't sure. Just because a tumor has disappeared visually, that we can detect, we don't know if it had stem cells that could lead to recurrence. And there is no time limit on recurrence. What if they go dormant for years and then return.

Thyroid cancer is a relatively slow growing cancer. So if there are thyroid cancer stem cells, and they grow slowly, how long will it take them to be detectable. It is my understanding that current medical technology such as a CT, MRI, ultrasound, or Xray can only detect down to approximately half a centimeter. In a pathology lab, after that something is removed from your body - whether by biopsy or surgery, they can see into the cell but they have to have found it before they can take it out.

How fast do things grow? I had a breast MRI and they indicated a 'suspicious area' that they wanted another look at in six months. At the six month mark, it was a 0.7 cm tumor (benign that time).

Well, we can't run off for tests monthly and have to assume the best - if necessary, go read Candide and learn about the 'best of all possible worlds' and get some optimism. The cancer relapse is still a riddle and we have to live with it.

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Rememberance

Pinktober is (finally) winding down. I survived and did not buy anything pink but I did get Halloween candy (which is hidden to ensure its survival until Sunday). But there is something more we can do in October. If you haven't, I suggest you donate to breast cancer research, not awareness. Don't buy something pink with a portion going to breast cancer research but send something directly to the Breast Cancer Research Foundation (www.bcrf.org) or go to breast-cancer-research.com and find another research based charity to donate.

In addition, this was sent to me by a friend who got it from a friend who got it off a message board somewhere. Make Sunday October 31, your day of remembrance as well.

Breast Cancer Awareness Month is winding down. I'm relieved it's over with and glad that I succeeded in some small way of creating more awareness for metastatic breast cancer. I will start earlier next year and build on what I've learned.

But I've also decided to create my own holiday: Breast Cancer Remembrance Day. On Oct, 31, the final day of Breast Cancer Awareness Month, I will remember the friends and family I have lost to this disease. It's Sunday, so I will light a candle for them and say some prayers.

I will wear black, not for its funeral implications but for its simple dignity, a quality that has been sadly lacking these past 30 pink saturated days.

At 8:45 that night I will go outside with a flashlight. I'll think of the one in 8 U.S. women who will get breast cancer and the 45,000 who will die this year.

My eighth grade science teacher told us if you turned on a flashlight and pointed it toward the sky the photons leave the flashlight and they immediately start to spread out. Provided that they don't hit anything, each individual photon travels through space forever.

Time slows down as you approach the speed of light.

I'll think of those whose time was all too brief and I'll hope for brighter days ahead.

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What's going on

I realized that I haven't blogged about me and how I am doing in a while, which was the whole point of this blog in the beginning. I'm doing okay mostly. The cancer business is really in a maintenance phase meaning I go to my medical oncologist three times a year for another two years, I go to my radiation oncologist once a year for a few more years, and I go to my surgeon annually and have a mammogram arranged through his office for life. I also go to the endocrinologist again in January for another thyroid ultrasound and if its stable I will be back on annual ultrasounds for a few more years and then I hope to get to one every five years.

Nearly three years out from chemo, my hair which I used to keep long and straight is now short and the natural wave shows. All the ugly gray which first grew in is gone and I am back to my brown with a few strands of gray here and there. I still get occasional tingles in my fingers from left over neuropathy. The other chemo side effects seem to have faded.

It is harder and harder to lose weight - is this aging or as a result of cancer treatments? The same can be said for my lack of a brain - due to chemo or aging? I don't know but I will claim chemo brain for a while and will look for my inner size six that I know is still there.

My current medical issues revolve around my left ankle which is still painful and I think I will have some clean out surgery in December as it is not any better. My back is my central complaint. I have had three treatments to relieve pain this year alone. I take two pain meds and an anti inflammatory for my back. This is not a situation which will change anytime soon. Two years ago it was not a problem at all. As one area is treated another area shows up. It is not fun and is a life changing event. But its not cancer - is that a cheery thought? I don't know - its a life long problem as well.

Emotionally I am feeling okay. I take antidepressants and see my therapist regularly. I am on an even keel and am coping with life. Do I sound like I mental disaster? I hope not. They say after a cancer diagnosis there is a sense of PTSD and that 25% of cancer patients are treated for depression after the fact.

A lot of the stress is off me in that I am no longer going to the doctor every week or so. Now I am going every month. Every time I pull into the hospital parking lot, the stress of the whole cancer roller coaster returns at some subliminal or not so subtle level. It is easier to stay off the roller coaster when I stay away from the hospital.

Four years ago I was working in downtown Boston and looking for another job as my work schedule got me home from work two hours after my husband and my boss was impossible. I wanted a job closer to home. I left my downtown job and got a job closer to home and got laid off two weeks before my breast cancer diagnosis. This little quirk of fate allowed me to switch my life into volunteering, working part time and for non-profits which actually makes me happier than trying to juggle medical issues and a full time job in downtown Boston.

My husband and I are happy in our lives. We both have taken turns being patient and caregiver which gives us a new perspective on things. Anyway, that is my life in a nutshell now. I am doing okay but my life is forever changed again. The only thing I regret is getting cancer a second time and I had no control over that.

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Behavior when faced with something bad

A homework assignment for all: Go read this article about how to behave and react when faced with the news that someone you know has cancer or some other lovely problem that could be life threatening and/or long term.

The author does an excellent job. I couldn't have said it so well at all. I can sum up my feelings in a much shorter list (I think).

First of all expect that you are going to do it all wrong - especially if you react like I would with a case of foot in mouth disease. When I was first diagnosed I finally got my husband to read a book called the Breast Cancer Husband. He told me he liked it because it started off by saying that however you reacted when your wife told you she had breast cancer, you did it wrong. But that's okay because probably nearly every husband did it wrong as well. The point is we are not perfect and it can be very difficult to keep one's mouth shut and contain one's reactions.

Never assume the worst. Life as a patient is full of rosy optimism because we couldn't handle it any other way. You don't need to be cheerful but you can try to be normal.

Just because someone you know was successfully treated for their disease, doesn't mean it will work for the person you are talking to. This is my pet peeve. Just because your neighbor's cousin's hairdresser's dogwalker's nephew had the same thing 20 years ago and did (or didn't) make it, things are different. Every cancer is different. Every disease is different. Medical science is progressing and treatment protocols change. Keep your mouth shut here as well.

Don't assume they are unable to do things unless they tell you. I was offered meals on wheels or some other food delivery service and was offended. I love to cook, no one was going to bring me food unless I was in a coma.

Whatever you do don't break down in tears or start wailing to the gods or praying out loud while you are with them. If you feel the need to do so, wait until you are in the privacy of your own home.

What can you do? Ask how they are doing. Treat them like a normal person. Tell them about the jerk at work who makes your life miserable. Tell them about the adventure you had when you tried to go shopping for new shoes. See if they want to get together. Even people in treatment might want to meet for a cup of coffee. Maybe you could stop by and say hello.

Sick people are still people. They need to hear about real life as well - even if they are trapped in an endless round of medical visits and treatments. We may have had our own mortality shoved in our face a bit more forcefully than expected but we still have feelings and hope.

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Needed: not awareness but research

The world is bathed in peptobismol pink through the month of Pinktober - formerly known as October. We are all aware of breast cancer now. We don't need more awareness, we need research. We should stop spending money on pink paint, pink ink, pink fabric, pink dye, pink thread, pink silk screening, etc.

Dr Susan Love, a respected breast surgeon and founder of the Dr. Susan B Love Research Foundation, explains it concisely. In the US, we give researchers funds and tell them go tell us what you find. What we need to do is give them funds and say 'find a cure'. We need to give them a goal to attain - some direction as it were.

She says it for me. This is what I think of Pinktober.

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A non-message

When I was first diagnosed with breast cancer, my doctors told me to be very careful of information found on line other than at the American Cancer Society's website (www.cancer.org) and at Breast Cancer.org (www.breastcancer.org). If I need information, I still refer to these sites.

The ACS's website is full of clinical information on all types of cancer in a somewhat dry, factual presentation. Breastcancer.org has clips of the latest news in the breast cancer world with little translations on what it means to the average person. It also has a wealth of information on many facets of breast cancer diagnosis and treatment.

But today I found a piece of non-information on their home page (www.breastcancer.org): Their founder was diagnosed with breast cancer. She posted a video about her breast cancer journey. Its a non message. She does not say what her treatment was - we can infer that it did not include chemotherapy because she has her hair - she just says that it was a personal treatment plan that was specific to her and it wouldn't apply to anyone else so she wasn't going to tell us.

Dr. Marisa Weiss, President and Founder, Breastcancer.org from Breastcancer.org on Vimeo.

My first thought at this non-message is that she followed a treatment plan that she would not endorse on her website. The way she addresses it by saying that it was specific to her and therefore she wasn't going to share it because it wouldn't apply to anyone else destroys some of the credibility of her website. If it was that personal and is the first in a wave of truly personalized medicine, wouldn't it be appropriate to talk about it? I have no idea what it was but I find it evasive and I find the evasiveness of her lack of an answer a detraction from the depth of her website.

Its a non-message and a non-answer that should be explained in full. This is a missed opportunity to explain how, from the founder's point of view, that now she is in the same boat as those she has tried to help over the years. A missed opportunity and reduced credibility as well.

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