Have you ever thought about what happens to small children when a parent has cancer? What about a sister or a brother? I know what happens, and it’s heartbreaking. My children are still carrying the scars of what they went through with me. When a child watches a parent fight cancer, life as she knows [...]
Have you ever thought about what happens to small children when a parent has cancer? What about a sister or a brother?
I know what happens, and it’s heartbreaking. My children are still carrying the scars of what they went through with me. When a child watches a parent fight cancer, life as she knows it is over. Our children are the casualties of our battles with life threatening illness, and support for them is sadly lacking.
I want to change this! It’s not even something that would be hard to do, but it is urgently needed.
What I’m talking about is a play group for children whose parents are facing life-threatening illness. What it would take is a place, a child therapist, some grownups who care, some art supplies and toys, and children. For kids, other kids are the most important part.
What happens to a child when mommy, daddy, sister or brother is sick?
First of all, complete disruption of established routines, which every child needs. Suddenly the house is full of people who seem very concerned. Mommy or Daddy can’t take care of them as usual, so others come in to care for them.
If people are bringing meals, the usual food and eating rituals are disrupted.
Children are frightened, but everyone is so absorbed in the care of the ill parent or sibling that these fears may go unacknowledged. Suddenly there is very little attention available for them. If their primary caretaker is ill, the abandonment and fear is terrible.
They are afraid, but they know that everybody is worried so they may keep their fears and concerns to themselves.
When I was fighting my cancer, I got my children into therapy. It wasn’t nearly enough but it helped. They both wanted me desperately, but I was busy fighting my disease, and often too ill to care for them. Others had to help me, but my children wanted me. I held onto the nightly bedtime ritual to try to maintain some kind of normalcy. I only missed bedtime lullabyes three times. If I did nothing else, I did that.
Several things stand out in my memory of this time, about my children.
First, a kind teacher at my children’s school took them under her wing and taught them to knit. My second and fourth grader gave up their recesses and lunch breaks to knit me a pink hat and slippers. I asked my daughter what that meant to her. She told me that it showed her that somebody cared. Other than Mrs. Tanamachi’s kindness, my daughter felt invisible. She felt that she was in another world, one that no one understood.
I know that feeling. When my father was dying, I remember a brilliant Seattle day when the sun was bright, the water sparkling, and the air fresh. It was all wrong. My father was dying. My girl described this same feeling to me. How can everybody go about their business when her mommy was sick and could die?
At this same school, two mean twins taunted my daughter that her mama was going to die. Kids can be so cruel.
There was a child in my daughter’s class who had survived leukemia. His mother told me that her son preferred to be with my daughter, because she “gets him”. There was some kind of well of compassion that my daughter had, that helped this boy.
What could be more therapeutic for these suffering children than other children?
If you’ve ever been on Planet Cancer, you know that it feels as if you are alone in a strange world. Our children feel this even more keenly. Just having children in a space together would be hugely life-changing for them.
What I want to create is a space for children to be together and know that they are not alone. I believe that every facility that treats life threatening illness should offer this component. My first thought was for children who have loved ones facing cancer, but other illnesses have similar impact. It wouldn’t be difficult. Someone just has to believe it’s important enough.
Will you help? I don’t want money or your signature on a petition, or anything like that. What I want is for you to pass the word to anyone you think could help make this happen.
This week I am going to discuss this project with my local cancer care facilities. What I am committed to is that someone who can make it happen will take it on.
If my children had been able to get this kind of support, they would have experienced being supported through a rough time instead of it being the most terrifying time of their lives.
If you have any ideas, resources, or suggestions to help me with this project, please contact me at firstname.lastname@example.org. We can make an impact on a child’s life that will last a lifetime.
And for Linda, and for Pat, and others who have asked. It’s so hard to know where to start with Complementary Therapies! My first thought when I was diagnosed was that I would use all the big guns my oncologist recommended, and all the big guns from the Complementary Therapies arsenal. At the time I [...]
And for Linda, and for Pat, and others who have asked. It’s so hard to know where to start with Complementary Therapies! My first thought when I was diagnosed was that I would use all the big guns my oncologist recommended, and all the big guns from the Complementary Therapies arsenal. At the time I was diagnosed, I had been a full time professional Massage Therapist for nearly 20 years. I knew all about complementary therapies, but I had been neglecting myself, badly. I wasn’t just a wounded healer. I had been limping for a long time. I had just emerged from an awful divorce, huge work stress (the hospital where I worked was downsizing, and the pressure was on!), and my children were suffering. They were 7 and 9. I knew something had to give, but I didn’t really know how to get out of the quicksand I was in.
When I got the diagnosis, I knew I had to fight and fight hard. I decided that I had an opportunity to heal my whole life, and that embracing that task would give me the best chance to survive. I sought healing of body, mind and spirit, and most importantly to mend the rifts between them. The word “congruence” was my operative word, and still is. So, my take on complementary therapies is really an approach rather than just a list of modalities. having said that, I pretty much used them all!
My practices for myself:
1. Say “yes” when anyone offered help. Accept with gratitude. Believe that I deserved the help and that giving it was a blessing to the ones who offered.
2. Put myself first, for the first time ever in my life, no matter who it upset. I was fighting for my life, and I knew it. A total stranger told me to do this, and I believed her.
3. Actively and deliberately sought my own happiness. It took awhile to figure out what that looked like.
4. Made a decision to stop beating myself up, period. Nothing was gained by my perfectionism, and I was beating myself down. Now I question my tendency to self blame, and if I find something that needs to change, I take note and move on.
I had to rely on #1 a lot, because I was not in a financial position to pay for everything I received. Still, I accepted it, and it all helped, more than the sum of it’s parts. Here’s my list:
1. Massage Therapy. I received a massage once a week while I was receiving chemotherapy. My colleagues at the hospital did this for me voluntarily, on their own time. I will always be deeply grateful for this.
2. Healing Touch. I received this through a Stanford University study called Healing Partners. I received one session per week for six months.
3. Acupuncture. My mom offered to pay for this because she knew it would help. I was a struggling single mom when I went on this journey so I did not have the funds to do this. I received acupuncture once every two weeks.
4. Guided Imagery. I believe this had a huge impact on my treatment. I used it to keep my blood cell counts up, to maximize the effectiveness of my treatments, and for healing after the treatments were over. I’ve already written a short article about that on the pages for Complementary Therapies. Excellent Guided Imagery CD’s and MP3 downloads are available from Health Journeys.
5. Support: I went to an Art and Imagery support group. This was a combination of Guided Imagery and using art therapeutically. It was very helpful. That program closed at the hospital and I really miss it. I also found my Caringbridge site to be a huge source of support.
6. Counseling. Fortunately for me, this was available through California Cancer Care where I received my treatments.
7. Laughter! I didn’t do “laughter therapy” (whatever that is…I haven’t tried Laughter Yoga but I have a friend who’s into it and loves it) but at the time I was diagnosed I had been attending a comedy improv class every week, and I made sure to continue. I timed my chemotherapy so I would be up for my class, and I didn’t miss a single one! Even after my surgery, I couldn’t play, but I could watch. I’m convinced that laughing my head off every week was very good for me.
8. Exercise is very important! I took advantage of the “Living Strong, Living Well” program at my local YMCA and did weights, cardiovascular exercise, and whatever else seemed like fun. I also did yoga at home, and some chi gong. I had a couple of videos and they worked well for me. I have a chi gong video that offers a 10 minute sequence for cleansing, called simply “chi gong for cleansing”. I am convinced that my complete recovery from surgery with my range of motion intact is because I did yoga.
9. Nutrition: My doctor told me, “Eat what looks good to you”. I wanted to be a martinet about what I ate, but I had decided to accept all help so I indulged in comfort food when it was offered. What I did do is create a smoothie that covered all the bases, and I had that every day during chemotherapy. Now I’m a bit more careful, but not super strict. I find the information on “Food for Breast Cancer” useful and I read the research they publish.
10. Cultivate hope, actively. I read everything I could get my hands on about recovering. The book “Remarkable Recovery” was my constant companion. I read the stories over and over, especially if I was feeling worn out by it all. The gist of what I got from it was that beating the odds was about doing it how you do it best, and it’s different for all of us.
11. Self expression and creativity. Everybody has her own way to do this. I found blogging, and loved it. I also got tons of support online, which was a huge help. I picked up a paint brush for the first time in 20 years or so. As I went through radiation, I was also rehearsing for a musical, again for the first time in 20 years. For you it may not be this sort of stuff, it may be something else, but whatever it is, it makes your spirit hum! If you’ve forgotten what that is, it’s time to discover it again!
12. Prayer. Whenever anyone offered to pray for me, I said yes, by all means please do! Acknowledging that my life was worth praying for, and allowing total strangers to pray for me (I was on a ton of prayer lists) was an important act of self love. There is research that supports the effectiveness of prayer, and I believe deeply that true self love sets all kinds of positive cellular happenings in motion.
13. Substitute “Feel Everything” for “stay positive”. I heard that stay positive stuff all the time from well meaning people. Being a Pollyanna does not help. Neither does denial. What does help is honoring what you feel, give it expression, and keep things moving. I didn’t elevate my lousy mood by pretending I didn’t have it. I blogged, “feel like crap, going to bed” and then later absorbed the messages of hope from my friends on my guestbook. I cried my way through a few infusions, and then felt better. After I cried I could make art or settle into my warm bed with some hot chocolate. Everything is allowed!
There’s my first stab at it ladies, for my dear IBC sisters and anyone else this may help. If you have any questions about what’s here so far, or want me to elaborate some more, please send me an email at email@example.com. What you tell me you want is what will be in Part Two. In the meantime, I am sleuthing out links and resources.
I hope this helps!
Yesterday, I had the loveliest afternoon and evening. I went and saw the Bodyworlds exhibit with my husband, my dear friend Susan, and new friend Kit. It was nothing less than amazing. Bodyworlds is an amazing display of the human body in movement, health and also in disease. The technology is plasticized human cadavers donated [...]
Yesterday, I had the loveliest afternoon and evening. I went and saw the Bodyworlds exhibit with my husband, my dear friend Susan, and new friend Kit. It was nothing less than amazing. Bodyworlds is an amazing display of the human body in movement, health and also in disease. The technology is plasticized human cadavers donated to science. They are beautifully and reverently displayed, and utterly fascinating. Interspersed with the specimens were elegant displays of relevant information. Susan and I are both massage therapists, so we were like little kids in a store full of chocolate, greeting the bones, muscles and nerves like old friends.
After the exhibit, we came home and watched a fascinating movie called “The Living Matrix”, about what they called “Informational Medicine”. The theory is that illness is scrambled information, and that by restoring the natural blueprint to the bodymind, health can be restored. It’s a complex topic too big to go into here, but the nugget that got me thinking was the discussion about the Placebo Effect. One doctor pointed out, if the placebo effect is documented to aid healing up to 30% of the time, why aren’t we using it?
In my case, I don’t think that belief itself changed anything about my disease. I think instead that the focus of my belief sent powerful messages to my body, which engaged my own healing response. I am deeply grateful that my doctors, and my mom, used their own Informational Medicine.
For whatever reason, I believed with all my heart that I would survive. I don’t know exactly why I did. The story I made up served me. I believed for myself that if I got the lesson, the teacher would leave and not return. I believed that what I was being asked to do was learn to really love myself, to open my own heart to me. I asked for any karma I had coming to make it’s way to me right then, in February of 2007. I decided to receive all that anyone wanted to give me. I used every tool I knew of to heal my whole life. This was and is my belief. I believe that staying on this path will keep me well.
What I did not know was that this story I was using to empower myself was fragile indeed. Any doctor could have deflated it easily, with one thoughtless comment or practical observation. The facts (the statistics) were not in my favor, the truth of which I was blissfully unaware. How did this happen?
It started with Dr. Borofsky. She did not tell me what she thought I had. She said that it was “very possibly” a cancer, and that we would know more when I received my full diagnosis. I was scared out of my mind. I asked her tearfully, “am I going to die?” Now there’s a silly, loaded question! Even bolder was her answer.
“No. No you’re not”. She said it with a firm shake of her head. I believed her. If she had lied, oh well, I wouldn’t be around to scold her for it! I believed her implicitly. I asked her about it later, and she laughed. She said that what she meant was,
“no, not now, not on my watch!” It was good enough for me.
When Dr. Brown told me my diagnosis, she did not express dismay when she said the words “Stage IIIC Inflammatory Breast Cancer”. It rolled off her lips like “it’s raining today, shall we eat inside?” When I asked for a prognosis, she said, “we’re optimistic”. That’s all I could get out of her.
Dr. Metkus wouldn’t give me statistics either. She said, “why do you want statistics? What good would they be? No one has ever studied Elizabeth Danu before.” My friend Flo told me that she had mentioned me to Dr. Metkus, and that the doctor had observed, “she’s a survivor”.
My mom totally censored the information she sent my way. The 25-50% survival rate for Inflammatory Breast Cancer never reached my ears. Instead, she sent me snippets of things that gave hope, and posts from long term survivors on the IBC support list.
My doctors, and the people who love me, conspired to keep me in the dark about what might frighten me, and they fed me what gave me strength and courage.
Never worry about giving someone “false hope”. No hope is false! There are exceptions to every statistical curve. This is why I read and re-read “Remarkable Recovery”. It was full of stories about people who disproved the statistics, and did what they knew would heal them. A basic principle that I learned years ago is, it’s true if it works!
My paradigm worked for me, and I am so grateful that the healers in my life supported my belief. This is the Placebo effect at work, deliberately.
This site is about Informational Medicine Power. Take what gives you strength, makes you laugh, brings hope, or whatever else you want, and disregard the rest. Reality is overrated!
My mom sent this to me during my “Oh My God what almost happened to me” freak out, after surgery and before radiation. At the time, I suddenly became fixated on statistics. I asked my doctors about statistics, and they didn’t tell me. Others had asked me about my prognosis, and nobody would give me [...]
My mom sent this to me during my “Oh My God what almost happened to me” freak out, after surgery and before radiation. At the time, I suddenly became fixated on statistics. I asked my doctors about statistics, and they didn’t tell me. Others had asked me about my prognosis, and nobody would give me one.
I tried to pin down Dr. Metkus, my wonderful surgeon, to get some sense of what to expect. What I really wanted was for someone to tell me that the statistics were in my favor (which I know now they weren’t).
She looked me straight in the eye and said evenly, “What good are statistics? No one has ever studied Elizabeth Danu before”.
One of my survivor friends, who continues to live far beyond her prognosis, joked “maybe I should just be a good patient and die now!”
I really had some first rate doctors.
Here’s the article, with the preamble from my wonderful mom.
The Median Isn’t the Message by Stephen Jay Gould
My life has recently intersected, in a most personal way, two of Mark Twain’s famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before – lies, damned lies, and statistics.
Consider the standard example of stretching the truth with numbers – a case quite relevant to my story. Statistics recognizes different measures of an “average,” or central tendency. The mean is our usual concept of an overall average – add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, “The mean income of our citizens is $15,000 per year.” The leader of the opposition might retort, “But half our citizens make less than $10,000 per year.” Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).
The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more “real” and the only proper basis for action – if it feels good, do it – while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, “Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death.”
This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.
In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: “What is the best technical literature about mesothelioma?” She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.
Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard’s Countway medical library and punched mesothelioma into the computer’s bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that’s why they didn’t give me anything to read. Then my mind started to work again, thank goodness.
If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied. Fortunately (since one can’t reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.
Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge – and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon’s proverb.
The problem may be briefly stated: What does “median mortality of eight months” signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as “I will probably be dead in eight months” – the very conclusion that must be avoided, since it isn’t so, and since attitude matters so much.
I was not, of course, overjoyed, but I didn’t read the statement in this vernacular way either. My technical training enjoined a different perspective on “eight months median mortality.” The point is a subtle one, but profound – for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.
We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous “beginning of life” or “definition of death,” although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard “realities,” and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the “I will probably be dead in eight months” may pass as a reasonable interpretation.
But all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently – and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.
When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.
Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call “right skewed.” (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out – left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn’t much room for the distribution’s lower (or left) half – it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran – for I had already concluded that my favorable profile made me a good candidate for that part of the curve.
The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances – substantial time. I didn’t have to stop and immediately follow Isaiah’s injunction to Hezekiah – set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.
One final point about statistical distributions. They apply only to a prescribed set of circumstances – in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.
It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die – and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy – and I find nothing reproachable in those who rage mightily against the dying of the light.
The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn’t expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain’s most famous line of all: the reports of my death are greatly exaggerated.
Postscript By Steve Dunn
Many people have written me to ask what became of Stephen Jay Gould. Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn’t mesothelioma, but a second and unrelated cancer.
In March 2002, Dr. Gould published his 1342 page “Magnum Opus”, The Structure of Evolutionary Theory. It is fitting that Gould, one of the world’s most prolific scientists and writers, was able to complete the definitive statement of his scientific work and philosophy just in time. That text is far too long and dense for almost any layman – but the works of Stephen Jay Gould will live on. Especially I hope, The Median Isn’t The Message
I had visits with two women today who had to push for an accurate diagnosis. I drove into San Francisco to meet Valerie, who was diagnosed with IBC just a month before I was. Several doctors told her it was an abscess. She had numerous mammograms that showed nothing, and her breast was turning red [...]
I had visits with two women today who had to push for an accurate diagnosis.
I drove into San Francisco to meet Valerie, who was diagnosed with IBC just a month before I was. Several doctors told her it was an abscess. She had numerous mammograms that showed nothing, and her breast was turning red and swollen before her eyes. She pushed until they knew what it was, and then she searched until she found someone who understood Inflammatory Breast Cancer. She told me that I was the first IBC survivor she had found who was diagnosed promptly and accurately. It was a full morning, and she gave me lots to think about. If you do a Google search on Valerie Fraser, you’ll see what a pioneer she is. She didn’t wait for someone else to give her the last word on her disease.
As I become more and more connected into the cancer advocacy world it is becoming clear that far too many people are not getting diagnosed promptly, and the story I keep hearing is that people know something is wrong. They know, and their doctor tells them not to worry, to wait. I naively thought that this was most common with IBC, and that other cancers were diagnosed more quickly.
After having breakfast with Valerie I headed back to San Mateo to teach my kids. Then it was to California Cancer Care to stand with my dear friend Anne for her second appointment with her oncologist. While I was waiting, I ran into another cancer traveler. I recognized her by her “fuzzy head” and we had a lively conversation. She had known something was wrong. She waited five months for a proper diagnosis! She wonders if her ovarian cancer would have been Stage 1 instead of Stage 2 if the doctors had taken her concerns seriously.
I would love to think that this stuff doesn’t happen anymore, but it does.
The problem is that none of us wants to believe we have cancer, so it can be the path of least resistance to not worry when deep down we know something is wrong.
I really don’t know where I’m going with this rant. I’m expressing frustration. Can the “average Joe” know all about stuff the doctors are supposed to know? It is also true that doctors are human and can make mistakes, but I take issue with a doctor who decides what a problem is before eliminating every possibility.
It still comes down to advocating for ourselves, knowing our bodies well, and taking charge of our medical care.
And, scary as it is, squirmy as it makes people, I still tell every woman I meet.
It’s been a long day.
Inflammatory Breast Cancer is very rare, and very aggressive. I am alive today because I went to the doctor right away for something that looked like nothing. The doctor who did my ultrasound knew about IBC, so I had a needle biopsy that day and from biopsy to chemotherapy was ten days. It wasn’t a minute too soon.
IBC is survivable, but timely (and that means FAST, folks) diagnosis and treatment is critical. If you or someone you care about has any of the following symptoms, get to your doctor and persist until you know exactly what it is. This information is directly from the IBC research site that I have posted in my links.
One or more of the following are Typical Symptoms of IBC:
- Swelling, usually sudden, sometimes a cup size in a few days
- Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
- Ridges and thickened areas of the skin
- Nipple retraction
- Nipple discharge, may or may not be bloody
- Breast is warm to the touch
- Breast pain (from a constant ache to stabbing pains)
- Change in color and texture of the areola
If you suddenly develop a lump or mass, have it checked immediately. We have one reported case where a 9x8x5cm lump developed in only three weeks.
Use caution when relying on the interpretations and reports of the mammogram or ultrasound! Inflammatory breast cancer usually grows in nests or sheets, rather than as a confined solid tumor. IBC may not be detected using either mammography or ultrasonography. Increased breast density compared to prior mammograms should be considered suspicious. Remember: You don’t have to have a lump to have breast cancer. (end of import from IBC site)
My own experience was that a quarter sized rash became a raging hot red breast with an inverted nipple, all in the two weeks it took to get from GP to ultrasound. When I had my scan it showed a sheet that was 11(!!!#&*) centimeters in diameter. I was lucky. Too many women are still losing the battle with IBC because no one shared this information with them.
Maybe talking about breasts with someone makes you uncomfortable. Sometimes women get uncomfortable when I share this information. Never mind. If she’s the one to five in a hundred breast cancers that is IBC, she will thank both of us for saving her life.
Please tell everyone you know!
About The LIberation of Persephone/ElizabethElizabeth Danu started this blog to provide a postive and useful resource for people facing cancer and thier loved ones. She is now a ten year survivor of Stage IIIC Inflammatory Breast cancer, enjoying her post-cancer life as a mom, blogger, speaker, wellness consultant and unquenchable optimist. She also sings and performs regularly with her a capella quartet, Curious Blend.
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This blog is a labor of love, and it has to fit into the nooks and crannies of my crazy, busy, wonderful life.
The few ads, affiliate links and other goodies help me enjoy getting my blog groove on here without feeling like I'm playing hooky, since I have dependents and I'm supposed to be at work! I also share the love with my favorite breast cancer research organizations.
Thanks so much!
- after treatment (21)
- Breast Cancer Awareness (4)
- chemotherapy (18)
- children (2)
- Complementary Therapies (4)
- Deadline 2020 (6)
- Feelgood (8)
- Getting Through Treatment (1)
- Guided Imagery (1)
- Guided Imagery (3)
- Humor (6)
- Inflammatory Breast Cancer (12)
- Life (4)
- Living well (7)
- Lymphedema (1)
- metastatic breast cancer (1)
- nutrition (3)
- prevention and diagnosis (7)
- recurrence (5)
- research (8)
- Resources (2)
- self care (32)
- statistics (4)
- Support (11)
- surgery (2)
- Survivorship (31)
- Uncategorized (69)
- Elizabeth on Inflammatory Breast Cancer
- Allan Birmantas on Inflammatory Breast Cancer
- Auntie on Contact Me
- Elizabeth on What to Know Before Your First Chemotherapy Session
- Sheila Warren on What to Know Before Your First Chemotherapy Session
- September 2016 (1)
- September 2015 (1)
- August 2014 (2)
- April 2014 (1)
- March 2014 (1)
- February 2014 (1)
- October 2013 (1)
- August 2013 (1)
- May 2013 (2)
- January 2013 (1)
- October 2012 (1)
- August 2012 (2)
- July 2012 (2)
- May 2012 (4)
- April 2012 (3)
- March 2012 (3)
- February 2012 (4)
- January 2012 (2)
- December 2011 (2)
- November 2011 (3)
- October 2011 (3)
- September 2011 (7)
- August 2011 (9)
- July 2011 (3)
- June 2011 (1)
- May 2011 (5)
- April 2011 (3)
- March 2011 (2)
- February 2011 (7)
- January 2011 (11)
- December 2010 (26)
- November 2010 (29)
- October 2010 (9)
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DO NOT DUPLICATEAll text and art found on these pages belong to Elizabeth Danu, Copyright 2008 - 2014 unless otherwise noted. All rights reserved. Unauthorized use of any material on this site is strictly prohibited. For permission to use anything presented here, please contact me directly. Elizabeth Danu
Disclosure:My intention with this website is to provide an oasis of hope for those facing a fierce diagnosis. Any proceeds from this site go towards building this resource and for breast cancer research, particularly directed towards Deadline 2020 for the end of breast cancer. Blessings, Elizabeth
My bedside companion in 2007
- The Liberation of Persephone is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com. Every item listed with this program has been personally used and valued by the author.