Sep 30, 2015
Story half told
This is the project I couldn't share before today. Go over to Story Half Told and you'll find the stories of five American women living with metastatic breast cancer-- including me! Or use Instagram or Twitter and #storyhalftold. I will share more about making the film and being followed by my own paparazzo (singular?).
Sep 17, 2015
Big changes
So what do unhealthy people do when they have spare time? They pack up their house and move. Yes we are moving. There are lots of benefits for us in moving. We can cut our monthly expenses in half. I can consider stop working. I can get more rest.
I just have to survive packing and moving.
We have been discussing this for a while. We bought this house when I was healthy and working full time in Boston and commuting by public transportation. As my health has tanked, there is no reason to believe I will ever be going back into Boston daily. If we move 10 miles or so away, we can save big time.
In the meantime, we are packing, house hunting, packing, preparing our house, packing, and packing. These are all things that healthy bodies are capable of but my not quite so healthy body doesn't like any of it. And my mind never likes change either.
I just have to survive packing and moving.
We have been discussing this for a while. We bought this house when I was healthy and working full time in Boston and commuting by public transportation. As my health has tanked, there is no reason to believe I will ever be going back into Boston daily. If we move 10 miles or so away, we can save big time.
In the meantime, we are packing, house hunting, packing, preparing our house, packing, and packing. These are all things that healthy bodies are capable of but my not quite so healthy body doesn't like any of it. And my mind never likes change either.
Sep 11, 2015
Low risk 'cancers'
So is it cancer or not? Sometimes they can't tell. For example which cases of DCIS will go on to turn into a potentially fatal breast cancer. Or which cases of thyroid lesions will actually grow into thyroid cancer? There is a growing epidemic of new cases of thyroid cancer and the question is which cases that are discovered will actually turn into cancer that could be fatal and which will not.
So what do you do? A lot of people fear the word cancer so much they just want it out of their body. One school of thought for the thyroid lesions that should not become a problem is to rename them "papillary lesions of indolent course". That just sounds so 'benign'.....
So if the word 'cancer' is taken out of the discussion, active surveillance might be better. I mean why go through surgery, etc for something that doesn't require treatment? "In many cases, active surveillance may be preferred over surgery by patients with small, relatively benign cancers that could take decades to grow to any appreciable size or cause life-threatening problems."
I have so many body parts currently under 'active surveillance' for multiple issues that I have lost count. I would be happy with that for additional body parts instead of surgery, chemo or radiation. This is much easier with thyroid cancer where the area can be easily ultrasounded and palpated to monitor growth. But not so much with DCIS where breast cancer can be much quicker to grow and harder to find.
Language can have a big impact on people's opinions of their diagnosis. The word cancer strikes fear into most people's brain. It paralyzes them, they are instantly going to die! But as more and more is learned about cancer, its detection, and treatment, maybe the best bet is to retrain our brains as to what will kill us and what won't.
An example is when AIDS was discovered it was instantly a terminal disease. Now people are living for decades with it and it is now chronic and not fatal. But the term AIDS still strikes fear into many but that is slowly calming.
I hope that the word 'cancer' also does not always strike fear into all as more and more of us are still around to talk about our diagnoses decades later.
So what do you do? A lot of people fear the word cancer so much they just want it out of their body. One school of thought for the thyroid lesions that should not become a problem is to rename them "papillary lesions of indolent course". That just sounds so 'benign'.....
So if the word 'cancer' is taken out of the discussion, active surveillance might be better. I mean why go through surgery, etc for something that doesn't require treatment? "In many cases, active surveillance may be preferred over surgery by patients with small, relatively benign cancers that could take decades to grow to any appreciable size or cause life-threatening problems."
I have so many body parts currently under 'active surveillance' for multiple issues that I have lost count. I would be happy with that for additional body parts instead of surgery, chemo or radiation. This is much easier with thyroid cancer where the area can be easily ultrasounded and palpated to monitor growth. But not so much with DCIS where breast cancer can be much quicker to grow and harder to find.
Language can have a big impact on people's opinions of their diagnosis. The word cancer strikes fear into most people's brain. It paralyzes them, they are instantly going to die! But as more and more is learned about cancer, its detection, and treatment, maybe the best bet is to retrain our brains as to what will kill us and what won't.
An example is when AIDS was discovered it was instantly a terminal disease. Now people are living for decades with it and it is now chronic and not fatal. But the term AIDS still strikes fear into many but that is slowly calming.
I hope that the word 'cancer' also does not always strike fear into all as more and more of us are still around to talk about our diagnoses decades later.
Sep 3, 2015
Taking the fun out
"Several studies have linked alcohol consumption to a higher risk of many cancers, including breast, mouth, throat, larynx, esophagus, liver, and colon and rectum. The risk rises with the amount of alcohol consumed."
Alcohol is evil and causes cancer. Great. Thanks. Anything else I need to worry about? Besides walking under ladders, playing in traffic, and walking by yourself in bad neighborhoods.
The latest blog post from Dana Farber's Insight (which is actually a pretty good blog) talks about alcohol consumption and cancer. The American Cancer Society recommends 1 drink a day for women and two for men. An oncologist recommends an occasional drink, if any.
My thought process from being the cancer patient is 'Excuse me I have cancer and my life currently sucks, I might want to drink more often than occasionally.' Whatever happened to the medical advice of hot lemonade and whiskey for a sore throat?
When I was 19 and told I had thyroid cancer, I was told by my doctor that my treatment was done and I should take care of myself, eat healthy, and get plenty of sleep. Thanks. I could have figured that out myself. But I did put a few years of thought into it and decided that I was going to live my life on my terms and not be 'boring'.
I was young and wanted to be a normal person and not 'that girl with cancer' for the rest of my life. So I did things my way. Yes I might drink alcohol. I might have partaken of other substances at different times in my life as well.
I don't want my health issues to rule my life. I want to be normal as much as possible. I want to do the things I want. I may not be able to climb a mountain now or ski down one but I can still go to the beach and out for fried clams. (Eeek! Fried food! Cholesterol alert!) Life requires little indulgences to be fun.
The way I see it, it is my body and my life. If I am not harming anyone else and want to have wine with dinner, I can't see a problem in it. However if you see me on a street corner drinking out of a bottle in a paper bag, feel free to interfere.
Alcohol is evil and causes cancer. Great. Thanks. Anything else I need to worry about? Besides walking under ladders, playing in traffic, and walking by yourself in bad neighborhoods.
The latest blog post from Dana Farber's Insight (which is actually a pretty good blog) talks about alcohol consumption and cancer. The American Cancer Society recommends 1 drink a day for women and two for men. An oncologist recommends an occasional drink, if any.
My thought process from being the cancer patient is 'Excuse me I have cancer and my life currently sucks, I might want to drink more often than occasionally.' Whatever happened to the medical advice of hot lemonade and whiskey for a sore throat?
When I was 19 and told I had thyroid cancer, I was told by my doctor that my treatment was done and I should take care of myself, eat healthy, and get plenty of sleep. Thanks. I could have figured that out myself. But I did put a few years of thought into it and decided that I was going to live my life on my terms and not be 'boring'.
I was young and wanted to be a normal person and not 'that girl with cancer' for the rest of my life. So I did things my way. Yes I might drink alcohol. I might have partaken of other substances at different times in my life as well.
I don't want my health issues to rule my life. I want to be normal as much as possible. I want to do the things I want. I may not be able to climb a mountain now or ski down one but I can still go to the beach and out for fried clams. (Eeek! Fried food! Cholesterol alert!) Life requires little indulgences to be fun.
The way I see it, it is my body and my life. If I am not harming anyone else and want to have wine with dinner, I can't see a problem in it. However if you see me on a street corner drinking out of a bottle in a paper bag, feel free to interfere.
Aug 19, 2015
Technical vs. conventional wisdom
If you're into the breast cancer rates of recurrence conversation (as I am), check out these two articles for some totally different takes.
The full Medscape article is here.
The full Medscape article is here.
The Mystery of a Common Breast Cancer Statistic -- Solved?
Nick Mulcahy
A commonly cited breast cancer statistic — that 30% of all early-stage breast cancers will progress, despite treatment, to deadly metastatic disease — appears to have no strong contemporary evidence to back it up.
Nonetheless, the statistic appears widely. For example, it is cited in an academic report (J Intern Med. 2013;274:113-126), in a breast cancer charity report, in a pharmaceutical marketing piece, and on a major cancer center website.
In short, the 30% figure is conventional wisdom — despite the absence of an authoritative epidemiologic source.
But is that statistic accurate and reflective of current clinical reality? And should clinicians repeat it to patients? Perhaps more importantly, does the statistic really matter? After all, the treatment of women with early-stage disease will not change whatever the statistic is, correct?
Medscape Medical News went in search of answers to these questions and found angry patients, a clinician author trusted blindly by a lot of people, and special access to a common database that, in fact, appears to solve the mystery of the proportion of early-stage patients who progress to metastatic disease.
Our story begins with multiple women with metastatic breast cancer who are dismayed or angry about the fuzziness and mystery of the 30% statistic, and have said so online.
I would like to know the true stats of how many breast cancers come back no matter what the hell we do for treatment.
For example, in a 2013 post on the breastcancer.org bulletin board, "SusansGarden" from Gig Harbor, Washington, wrote: "I would like to know the true stats of how many breast cancers come back no matter what the hell we do for treatment."
The topic has been discussed repeatedly by "metsers" for a few years, but a recent blog post got a lot of attention.
On July 21, metastatic breast cancer patient and blogger Ann Silberman, from Sacramento, California, examined the 30% statistic. For the individual patient, "none of this matters," she wrote. "You will relapse or you won't." But Silberman, who unsuccessfully looked for a credible source for the statistic for 7 months, added that "it's harmful to mis-state things, use scare tactics, and otherwise try to make a bad thing worse."
The post, with its reference to scare tactics by prominent breast cancer organizations, including Komen for the Cure, prompted a response from the Metastatic Breast Cancer Network (MBCN), a respected patient advocacy group. (continues on pages 2 and 3.)
NOTE: This next article is NOT the 2005 CME review on metastatic disease referred to above and published in the Oncologist by prominent medical oncologist Joyce O'Shaughnessy, MD, from Baylor University in Houston, which is quoted above.
Images from the full scientific abstract from PubMed are here.
Breast Cancer Res Treat. 2013 Jan;137(2):449-55. doi: 10.1007/s10549-012-2366-0. Epub 2012 Dec 6.
Effect of HER2 status on distant recurrence in early stage breast cancer.
Hess KR1, Esteva FJ.Author informationAbstract
It has long been recognized in breast cancer that the effect of hormone receptor (HR) status on recurrence rates varies over time and with the site of recurrence. However, there is relatively little in the literature on the effect of human epidermal growth factor receptor 2 (HER2) on recurrence patterns. We wanted to assess whether the effect of HER2 status on the risk of distant recurrence changed over time and/or with HR status and whether these relationships varied with site of recurrence. We retrospectively studied 11,011 women diagnosed with stage I, II, or III breast cancer after 1997 who had data on HR status and HER2 status. 20 % were HR negative and HER2 negative (so-called "triple-negatives"), 7 % were HR negative and HER2 positive, 64 % were HR positive and HER2 negative, and 10 % were HR positive and HER2 positive. The estimated overall cumulative incidence of developing distant metastases is 20 % at 4 years, 30 % at 8 years, and 36 % at 12 years. The 12-year cumulative incidence was 23 % for bone, 16 % for liver, 14 % for lung, 13 % for distant lymph node, 10 % for brain, and 8 % for pleura. After adjusting for potential confounding factors, the nature of the effect of HER2 on recurrence rates was found to differ markedly across the sites of recurrence. For brain and pleura recurrences, the effect of HER2 depended on HR status in ways that significantly changed over time. For bone recurrences, the effect of HER2 did not depend on HR status, but did change significantly over time. For liver and distant lymph node recurrences, there was a significant effect of HER2 status that did not change with time or HR status. For lung recurrences, rates did not significantly vary with HER2 status. PMID:
23225147 [PubMed - indexed for MEDLINE] PMCID: PMC3544467