On Monday night I "attended" a Tweet chat on Twitter called #bcsm (Breast Cancer Social Media). Basically, it's an hour long event on Twitter every Monday night at 9pm EST, and is attended by anyone who's interested in talking about breast cancer. If you missed it or would like to know more, here's a round-up and transcript of last Monday's chat by @jodyms who co-hosts and blogs at Women With Cancer. You can join the chat just by adding #bcsm to your tweets,
One of the really great things about this forum, is that it's also attended by health care professionals, and is a fabulous opportunity for patients, like me, to connect with these folks in a forum that doesn't involve an invoice or a fight with the health insurance company. It's really interesting to get a perspective from the "other side of the desk" so to speak and to also share mine.
After the chat, I read the transcript and was struck by a comment from one of the doctors in attendance.
More and more oncologist see Stage IV as a chronic disease that one can live a really long time with -- QUALITY TIME #bcsmLet me just preface by saying that I completely understand that the comment came from a place of kindness and compassion, perhaps to try and ease the fears of those in attendance who are living with Stage IV disease.
But on the other hand the comment did cause my blood pressure to spike somewhat.
Is this really the belief of most oncologists? Because if it is then then I'm putting my hand up to say that there may be a DEEP chasm from what oncologists believe to what metastatic cancer patients are really thinking.
Firstly, I don't see metastatic breast cancer as a "chronic disease". I believe that to refer to it in this manner does a huge disservice to the work of the metastatic breast cancer advocates. The "chronic disease" argument invalidates our concerns about current treatments and our very real fears of dying of breast cancer, and completely hides the fact that metastatic breast cancer patients still do not have a game changing drug designed to specifically prevent initial and new metastatic tumors. And the same could be said for many other Stage IV cancers actually.
What we do have is a long list of incrementally and temporarily successful drugs designed to shrink tumors, none of which provide a cure, and none of which are known to actually prevent new metastases. The drugs buy us time, more for some patients, less for others, and there is no way to know which one's will actually work, for whom, and for how long. So we just keep working down the list of drugs until we perchance get the miracle of N.E.D. (No Evidence of Disease), or as is more likely, we exhaust our options and then say enough is enough and end our lives apparently and invariably with "grace and dignity". Is this really what "chronic disease" looks like?
In the metastatic breast cancer setting, how is a "really long time"defined and what does "quality time" really mean? I suspect that if a patient were asked, their definitions and understanding of these terms might be wildly different to that of their medical team and indeed that of family and friends.
"A really long time" in the world of chemotherapy drug development is termed "overall survival" and is generally measured in months, not years. To the statistician, a metastatic breast cancer diagnosis might mean average survival of about three years. To the actual patient, we say "screw statistics" and hang on for dear life to the belief that we're going to be the ones who beat the odds. And some of us do, but there's also many that don't. For me, the question of what a "really long time" looks like is something I prefer not to dwell on. Hopefully it means years, maybe even a decade or two or three, but no one really knows. I just hope that it is a "really long time".
And "quality time"? Quality time to me means
- not having to go to chemotherapy every week
- not having to obsess over my bowel movements
- not having to wrangle with Nurse Ratched or Nurse Useless
- not having to deal with mystery secondary illnesses that of course could not possibly be related to cancer treatment
- not having to worry about cascade side effects of drugs taken to combat chemotherapy side effects and cancer symptoms
- not having to waste time dealing with health insurance and billing issues
- having a left arm that actually works and doesn't cause me pain 24/7
- having hair to brush and style
- not having to be ruled by an alarm clock and pills that must be taken on time
- not having my life put on hold every three months whilst we wait for scan results
- being able to sit in the sun without having to worry about chemo-induced sunburn
- being able to go on vacation without having to think about proximity to hospitals et al
- not having to ask family members to help me with household chores and grocery shopping
- not having to worry at forty years old, about the same issues that concern senior citizens
- having the energy to stay up past 10pm
- not having to worry full stop
Now there may be many of you who disagree with my reaction to this particular comment. And that's fine. I welcome the discussion. We can all learn from each other. So let's keep talking about this. Let's add our voice and be heard in forums like #bcsm. Hope to "see" you there for the next chat.
Every voice matters.
Now back to summer hiatus and some QUALITY time !
I am so sorry that you were upset by this comment and I do believe your reaction is perfectly justified! After all, quality of life is subjective! Only you can define it what your QOL criteria!ReplyDelete
I understand why you felt uncomfortable with the term 'chronic disease' as it refers to stage IV bc. It seems to kind of sugar coat it doesn't it? Problem is, it's not really possible to sugar coat this beast.ReplyDelete
Nancy's right in that the chronic term seems to "sugar coat" the hellacious, frightening in the trenches strength and endurance required to live with breast cancer chronically. It's devastating to think doctors think of us as categories like "won't see her again," "chronic condition," or "running out of time."ReplyDelete
In the doctor's defense, Tweets are flying by and we're all struggling to get our 140 characters out there before we miss too many Tweets. I know I found myself stuck at times, feeling the time crunch to find the right words to convey my message.
When he said that, I asked, more than once, how many women/families decide not to "live" with the nightmare called "chronic," but never really got an answer. Obviously, on some level, it bothered me as well.
Don't let this ruin your summer hiatus.
Thank you Anna for once again reminding us of the realities of being a stage IV breast cancer patient in your honest and straightforward way. This is exactly the truth we should be hearing so that we can seriously look at treating stage IV properly - not just trying to extend life using the next drug that may or may not work, and will result in multiple side effects that spoil quality of life.ReplyDelete
And if what you describe doesn't make us think about preventing this disease in the first place then what will?
Once again you have made me think and think again, and I am always glad to hear your voice.
I'm glad you are having a summer hiatus and finding some quality time!
Anna, I think your response is entirely justified. Maybe for some people with metastatic disease, who have, say, bone mets that can be reasonably well-managed with Zometa or something, it can somewhat fit the chronic disease notion. But it's still metastatic disease, and even in the best of circumstances, there is always a chance that it will spread somewhere else & wreak more havoc.ReplyDelete
You know how I feel about honesty and candor in our relationships with doctors. The nicest thing I can say about that comment is that is was perhaps meant to provide some hope. Problem is, it doesn't reflect reality. Maybe that approach works for some folks. Doesn't work for me or for you. Nor for most of the people I know. You can't make informed decisions without candor and honesty. Semantics are important. Euphemisms should be banished from medical discourse. Death and mortality are real. The docs need to get over their disconnect with reality.
It's not about what someone did or didn't say.
It's about your clarity in so realistically describing the experience of far too many women - young women - with breast cancer. Your list of what it's like brings it home so clearly.
Now many -- and not just physicians - will understand metastatic disease in a way they hadn't before.
Keep up the great writing.
Anna, I really appreciate hearing your perspective and I hope the doc reads your blog and "hears" you too. I think many hope that breast cancer will become a chronic disease by 2020, but we are not there yet. It might mean women at risk of metastasis take something to prevent tumors for the rest of their lives, but that intervention will NOT compromise the quality of life, or we haven't succeeded.ReplyDelete
You did NOT over-react!!! I completely AGREE with what you said! And WELL SAID it was!!! Thanks for taking a hiatus break to share that with us.ReplyDelete
Shelli @ The Dirty Pink Underbelly
Wow. As usual, you summed up your experience and the experience of others w. metastatic cancer so eloquently. You ROCK. Enjoy your summer break! Love, JacksReplyDelete
Anna, did you invite the doctor in question to read and possibly comment on your blog? Given the tenor of the #bcsm conversation, I'd like to think that s/he would appreciate the opportunity to expand on her/his comment. Perhaps your blog will serve as a learning moment. Social media affords us a glimpse into perspectives we may not otherwise have had access to.ReplyDelete
Let's continue to work at shrinking the "deep chasm from what oncologists believe to what metastatic cancer patients are really thinking."
Marie - I wasn't so much upset as I was frustratedReplyDelete
NP- the word "chronic" bothersome because I just don't think we're thet in terms of the drugs
BCS- I agree the tweet chats are hard in that context can be difficult to convey. I know this doc meant kindnessvwith this comment but it's the overarching belief by the medical community that worries me
BS- by telling the truth I hope change will eventually come for the mets community....I'll keep singing it.
KK- the mortality stats for mets don't lie. Sooner or later the beast will roar. Docs need to find that balance between placating and reality and that's got to be very tough when emotions just run so high.
JMS- thank you for your reassuring comment.
Shell - thanks!!!!!
jF- thanks Jacks
CY- yes ! Blog was read my the doc and he sent me a message to say he concurred with everything I said which was tremendous
CY... Which was tremendous validation. You are so right, that the sharing of perspectives is what's so powerful about social media. I too hope we use it o help shrink the chasm. Thanks for commenting.ReplyDelete
Apologies for typos.....stupid iPad keyboard.....ReplyDelete
And thank you so much for pointing out this is the reality that applies to ALL stage IV cancers. As a prostate cancer patient who has recently crossed that line I share your frustration. There is a difference between chronic disease for which there is a treatment that can provide a reasonable quality of life for most of the patients with that disease (think diabetes) and a disease whose treatments offer none of that. We are trying to achieve a decent quality of life for however long our futures might be. And, in many cases if not nearly all, that in no way resembles life before cancer. I especially appreciate your quality 'list'. Many of the same things here!ReplyDelete
This is an excellent posting about an important topic. You are so right when you say that referring to Stage IV cancer as a chronic disease undermines the seriousness of it. It's that whole "think positive" BS that causes people to talk that way.
Every concern and every item on your list are valid. People who are healthy take all of this for granted.
In many cases, what doctors think and what patients think are two different things entirely. Maybe you can bring this up for our next chat?
BTW, I participated, and LOVED it -- once I got used to always using the hashtag after a comment. I agree that it was great to tell medical professionals the patients' perspective.
Hats off to the medical professionals who were trying to see things from our perspective.
Again, brilliant posting as always!
Anna, I understand the use of "chronic disease", but I agree that we are certainly not there yet. My mother battled for 13 years three rounds of chemo, the last one for 7 yrs straight, five days a week....schlepping to the hosp every day, hour and a half each way until she passed away (likely from the chemo!). I am not sure she would agree that she was dealing with a chronic disease, was just trying to stay alive to see her grandchildren grow up. It's about time that $ be spent on finding a real cure and skip all the nonsence of awareness and damaging drugs....for sure, my mother was very "aware" of her cancer, and very aware of all the problems the meds caused.ReplyDelete
Anna, you are not overreacting at all. You're being realistic. I saw that tweet when it came up and was also surprised by it. Chronic? Like a backache? I don't think so and you poignantly and honestly described exactly the reasons why. Thank you for that. Now, go back to enjoying your summer! This blogging is disturbing Newman.ReplyDelete
My sister is a breast cancer survivor and I know that she would agree with everything you have said in this article.
She has just started getting onto the internet and I am going to forward her your site.
I really love the way you write :)
Although I do not 'Tweet' and live in Australia Anna, I thoroughly appreciate your sentiments as discussed in this post. Opening the subject up for discussion, can be healing in itself as healing takes place on many levels. There must be an easier way.ReplyDelete
My best wishes xo
Anna, first of all, thank you for bringing this Twitter cancer chatroom to your readers' attention. I wish I could participate, but my Monday evenings are taken up with another commitment for at least three weeks. Maybe I can join in when August rolls around.ReplyDelete
As to your reaction, I don't think it was out of line at all. Your feelings about this disease you live with are valid and shouldn't be dismissed with a limited-character Tweet. Stand your ground and make your position known so that others in your shoes will have a voice, a spokeswoman who can verbalize what they wish they could say. I love your definition of quality time. Well said.
Take time to relax and enjoy what is left of the summer.
Great to hear the cheerful you trying to meet your quality time.Medications and the pains are always there with the chronic ailing like you and me...it is these small breaks that make our life so bright.ReplyDelete
Suzanne S. Great article. I'm so happy that you were willing to comment about the doctor's statement. Doctor's who work with cancer daily and it's ugly stages should take mental time to think about what they are saying....Cancer has never been and will NEVER be a chronic illness. Anyone that works in the field definitely knows it. It can pick up it's ugly head at any time. Each person who experiences cancer has fears continuously about it's reocurrance. That is not true of chronic illness It just worsens. over time. I really admire all of you out there who are battling this disease and are willing even in your roughest days to look for answers and to answers challenges from all others out there that don't really understand the psychology of what a cancer patient experiences.ReplyDelete