Monday, September 15, 2008
"2 young"
Those of you who use RSS feeds to follow my blog, please click out to the actual blog.
First, you will see happy new Fall graphics.
Next, I'd like to ask you to scroll down a bit and peruse the "2 young" menu on the right side of the page. These are some of the women I've encountered on the Young Survival Coalition bulletin boards. It is by no means a comprehensive list of all the women there who have their own blogs, web pages, MySpace pages, Caring Bridge pages, Facebook pages, etc. But I quail at adding more names because it's a pretty long list, even here.
Two of the pages in the list now belong to women who have died from their breast cancer. "Jayme" would have been 36 at the end of this past July, but she didn't make it to her birthday. "Courtney - bccourtney" died last night at the age of 23. She was a dancer; she was diagnosed three years ago and the disease ate her body away.
I don't really know what to do with the links, because they won't be updated. Do I just whittle the list down, or do I leave the names, knowing that nothing new will be posted; no answers will be listed on their personal pages about where they are and what they are doing?
Sorry for the downer. It's just vitally important for people to know that young women do get breast cancer, and that young women also die from it. "Early detection" and "prevention" are worthy concepts, but insufficient. Is "Cure" too much to hope for? I hope for myself and for the women listed in the right margin--and for all women dealing with breast cancer who aren't in my feeble list--that it isn't.
I guess if you are bummed now, try looking at the happy Fall graphics again.
Love,
Janet
First, you will see happy new Fall graphics.
Next, I'd like to ask you to scroll down a bit and peruse the "2 young" menu on the right side of the page. These are some of the women I've encountered on the Young Survival Coalition bulletin boards. It is by no means a comprehensive list of all the women there who have their own blogs, web pages, MySpace pages, Caring Bridge pages, Facebook pages, etc. But I quail at adding more names because it's a pretty long list, even here.
Two of the pages in the list now belong to women who have died from their breast cancer. "Jayme" would have been 36 at the end of this past July, but she didn't make it to her birthday. "Courtney - bccourtney" died last night at the age of 23. She was a dancer; she was diagnosed three years ago and the disease ate her body away.
I don't really know what to do with the links, because they won't be updated. Do I just whittle the list down, or do I leave the names, knowing that nothing new will be posted; no answers will be listed on their personal pages about where they are and what they are doing?
Sorry for the downer. It's just vitally important for people to know that young women do get breast cancer, and that young women also die from it. "Early detection" and "prevention" are worthy concepts, but insufficient. Is "Cure" too much to hope for? I hope for myself and for the women listed in the right margin--and for all women dealing with breast cancer who aren't in my feeble list--that it isn't.
I guess if you are bummed now, try looking at the happy Fall graphics again.
Love,
Janet
Labels: awareness, cure, metastasis, prevention, YSC
Sunday, June 17, 2007
Don't Even TRY to Tell Me
Warning: this is a long, rambling rant. It does not contain sufficient citations/annotations and is somewhat repetitive.
"People who get DCIS are lucky."
Read my archive and then tell me how "lucky" people who get DCIS are. I heard this from my doctors, and I've read it on cancer survivor bulletin boards. People assume DCIS involves less treatment than other types of breast cancer so it must be "easier." I know of people who had their cancer staged higher than mine who had less initial treatment, and probably will not recur--some of whom express envy of people who were staged with DCIS.
One of my bulletin board compatriots, a woman who has metastatic disease, also had DCIS and now has confirmed brain mets.
The tiniest cancer cell is as deadly as any other mass of cancer cells.
"CMF chemo is 'light' and therefore easy."
I felt like I had the flu for six months and gained permanent aversions to certain smells. I can never smell baby shampoo without gagging because my oncology nurse suggested that baby shampoo would help keep my hair from falling out.
Just because I only developed a bald spot and didn't lose all my hair did NOT mean I felt swell and dandy. Having the flu sucks. Having flu symptoms as part of an effort to make you "better" doesn't make the symptoms more fun.
"If you don't have a 'family history' of breast cancer, your risk is lower."
Most people who are diagnosed with breast cancer have no family history. Having a family history can raise an individual's risk--and may be an indicator that there is a genetic component--but that's a completely different kind of statistic and doesn't apply to the population as a whole. Yes, screening of people with a family history is extremely important, but so is screening the majority of the population who will be diagnosed. I've been told many times it's better to catch it "early" (see my remarks about DCIS above), so why are doctors not more interested in catching it early?
"It's not worth screening younger women because of all the 'false positives.' "
I was diagnosed at age 30 and had no "history" of breast cancer that I knew of. My mother, my grandmother never had it; I have no sisters. If I had waited until the appropriate age to have a screening mammogram--and if my family care practice hadn't been on the ball enough to suggest a mammogram to investigate my lump (which, freakishly, turned out to be harmless, although there was cancer there), I'd still be waiting for my screening mammogram.
When I was first diagnosed, I was advised to get a copy of Dr. Susan Love's Breast Book. It is very large and makes an excellent doorstop. She explains the anatomy of the breast as well as anyone can, but this book did not help me because I had doctors who were able to explain things as least as clearly and in fewer words. While I was going through treatment, I encountered an article she wrote (or was interviewed for...I'm too angry and lazy to go look up the citation) in Glamour Magazine wherein she commented that we make too big a deal out of cancer and that many young women are unnecessarily frightened and undergo unnecessary surgery due to a rash breast cancer diagnosis.
Her entire thesis is that those people who might experience a "false positive" are statistically more important than I am.
Well f*ck that.
Recently guidelines for breast MRIs were published that I had hoped would make it easier for younger women to be screened for breast cancer (the difficulty being that young breast tissue tends to be dense and mammograms don't work very well on dense breasts), but the guidelines still state that MRIs are really only appropriate for people with "an increased risk" of breast cancer.
Do you know who is NOT at "increased risk"? PEOPLE WHO HAVE ALREADY HAD BREAST CANCER.
?!
People who are under the age of 35 who have "no family history" but who have an unexplained lump are not at "increased risk." This whole MRI thing would have had me still waiting for my baseline screening.
I don't read Dr. Susan Love's remarks anymore, and I get very angry when I read things of the same flavor...Anyone who suggests to me that statistics are a valid reason to let me go untreated/undiagnosed is not somebody I care to listen to.
"In follow up care, we shouldn't be too quick to run scans and tests."
This is largely to keep costs down, I believe. Scans and scanning equipment are expensive. "False positives" are expensive. Insurance is expensive. It is not good to cause needless emotional trauma to fragile, fragile women.
You know what else is expensive and traumatizing? Spending a damn month in the hospital with a mangled pelvis because it wasn't worth running expensive scans on a "lucky" woman who had DCIS, did "light chemo" was "cured" and has no "family history." I would be very interested to know if anyone has ever calculated the relative cost of treating someone who was not screened early enough to catch a disease before it got really ugly versus the cost of doing a scan that finds what it is looking for so the patient can be treated appropriately. I know my treatments have not been cheap. How much money could have been saved by doing a bone scan months before I had all kinds of other procedures which were unable to verify why I was having hip pain?
"Stage IV people should be treated if they are symptomatic, not before. We shouldn't go looking for disease in remote parts of the body."
I've heard that by the time bone mets are painful, they are very advanced. What's wrong with preventative medicine? Doesn't anybody study whether preventative medicine is cheaper in the long run than treating advanced crises? Wouldn't therapies that prevent bone mets reduce costs for everyone later along the line?
I also have recently read some articles debating the merits of doing routine brain scans on people with stage IV cancer. The current thinking (and I believe my doctor feels this way, too) is that in treating advanced disease, one treats the symptoms and doesn't go looking for trouble. In other words, my doctor probably will not check me for brain mets unless I start having severe neurological symptoms. I did have a brain scan when I was going through my stint of uncontrollable vomiting, but haven't had one since.
I will not have targeted therapy of my liver--and instead will continue systemic treatment--because I feel "fine."
The woman I referred to in the beginning of this post, who was also feeling "fine" until just a day or so ago has just discovered that she has some massive lesions in her brain. She discovered this by undergoing a terrifying seizure, during which she was conscious and could hear her own labored breathing--which she describes as sounding like that of her dying grandmother.
I wonder if I am becoming too complacent with my own treatment.
Maybe it's time to demand some scans. I have to do my part to drive up medical costs for everyone else to save my own, needless ass.
"People who get DCIS are lucky."
Read my archive and then tell me how "lucky" people who get DCIS are. I heard this from my doctors, and I've read it on cancer survivor bulletin boards. People assume DCIS involves less treatment than other types of breast cancer so it must be "easier." I know of people who had their cancer staged higher than mine who had less initial treatment, and probably will not recur--some of whom express envy of people who were staged with DCIS.
One of my bulletin board compatriots, a woman who has metastatic disease, also had DCIS and now has confirmed brain mets.
The tiniest cancer cell is as deadly as any other mass of cancer cells.
"CMF chemo is 'light' and therefore easy."
I felt like I had the flu for six months and gained permanent aversions to certain smells. I can never smell baby shampoo without gagging because my oncology nurse suggested that baby shampoo would help keep my hair from falling out.
Just because I only developed a bald spot and didn't lose all my hair did NOT mean I felt swell and dandy. Having the flu sucks. Having flu symptoms as part of an effort to make you "better" doesn't make the symptoms more fun.
"If you don't have a 'family history' of breast cancer, your risk is lower."
Most people who are diagnosed with breast cancer have no family history. Having a family history can raise an individual's risk--and may be an indicator that there is a genetic component--but that's a completely different kind of statistic and doesn't apply to the population as a whole. Yes, screening of people with a family history is extremely important, but so is screening the majority of the population who will be diagnosed. I've been told many times it's better to catch it "early" (see my remarks about DCIS above), so why are doctors not more interested in catching it early?
"It's not worth screening younger women because of all the 'false positives.' "
I was diagnosed at age 30 and had no "history" of breast cancer that I knew of. My mother, my grandmother never had it; I have no sisters. If I had waited until the appropriate age to have a screening mammogram--and if my family care practice hadn't been on the ball enough to suggest a mammogram to investigate my lump (which, freakishly, turned out to be harmless, although there was cancer there), I'd still be waiting for my screening mammogram.
When I was first diagnosed, I was advised to get a copy of Dr. Susan Love's Breast Book. It is very large and makes an excellent doorstop. She explains the anatomy of the breast as well as anyone can, but this book did not help me because I had doctors who were able to explain things as least as clearly and in fewer words. While I was going through treatment, I encountered an article she wrote (or was interviewed for...I'm too angry and lazy to go look up the citation) in Glamour Magazine wherein she commented that we make too big a deal out of cancer and that many young women are unnecessarily frightened and undergo unnecessary surgery due to a rash breast cancer diagnosis.
Her entire thesis is that those people who might experience a "false positive" are statistically more important than I am.
Well f*ck that.
Recently guidelines for breast MRIs were published that I had hoped would make it easier for younger women to be screened for breast cancer (the difficulty being that young breast tissue tends to be dense and mammograms don't work very well on dense breasts), but the guidelines still state that MRIs are really only appropriate for people with "an increased risk" of breast cancer.
Do you know who is NOT at "increased risk"? PEOPLE WHO HAVE ALREADY HAD BREAST CANCER.
?!
People who are under the age of 35 who have "no family history" but who have an unexplained lump are not at "increased risk." This whole MRI thing would have had me still waiting for my baseline screening.
I don't read Dr. Susan Love's remarks anymore, and I get very angry when I read things of the same flavor...Anyone who suggests to me that statistics are a valid reason to let me go untreated/undiagnosed is not somebody I care to listen to.
"In follow up care, we shouldn't be too quick to run scans and tests."
This is largely to keep costs down, I believe. Scans and scanning equipment are expensive. "False positives" are expensive. Insurance is expensive. It is not good to cause needless emotional trauma to fragile, fragile women.
You know what else is expensive and traumatizing? Spending a damn month in the hospital with a mangled pelvis because it wasn't worth running expensive scans on a "lucky" woman who had DCIS, did "light chemo" was "cured" and has no "family history." I would be very interested to know if anyone has ever calculated the relative cost of treating someone who was not screened early enough to catch a disease before it got really ugly versus the cost of doing a scan that finds what it is looking for so the patient can be treated appropriately. I know my treatments have not been cheap. How much money could have been saved by doing a bone scan months before I had all kinds of other procedures which were unable to verify why I was having hip pain?
"Stage IV people should be treated if they are symptomatic, not before. We shouldn't go looking for disease in remote parts of the body."
I've heard that by the time bone mets are painful, they are very advanced. What's wrong with preventative medicine? Doesn't anybody study whether preventative medicine is cheaper in the long run than treating advanced crises? Wouldn't therapies that prevent bone mets reduce costs for everyone later along the line?
I also have recently read some articles debating the merits of doing routine brain scans on people with stage IV cancer. The current thinking (and I believe my doctor feels this way, too) is that in treating advanced disease, one treats the symptoms and doesn't go looking for trouble. In other words, my doctor probably will not check me for brain mets unless I start having severe neurological symptoms. I did have a brain scan when I was going through my stint of uncontrollable vomiting, but haven't had one since.
I will not have targeted therapy of my liver--and instead will continue systemic treatment--because I feel "fine."
The woman I referred to in the beginning of this post, who was also feeling "fine" until just a day or so ago has just discovered that she has some massive lesions in her brain. She discovered this by undergoing a terrifying seizure, during which she was conscious and could hear her own labored breathing--which she describes as sounding like that of her dying grandmother.
I wonder if I am becoming too complacent with my own treatment.
Maybe it's time to demand some scans. I have to do my part to drive up medical costs for everyone else to save my own, needless ass.
Labels: bone scan, brain scan, DCIS, metastasis, MRI, prevention
Saturday, December 23, 2006
Preventing a Recurrence
Recently over at YSC, a discussion arose about how to prevent a recurrence of cancer.
Whereas I can understand people wanting to feel like they are being proactive about their health--and that they have some control over their destiny, this sort of topic always makes me angry. Will cutting out alcohol help? Taking vitamins? Exercise is the key, isn't it?
If by omitting something, or by adding something else one can prevent a recurrence, the implication is that I did something wrong. Did my cancer recur because I still drink diet soda? Did it recur because my BMI is too high? Did I just not pray hard enough?
This was my response:
A lot of literature focuses on breast cancer prevention--early screenings, better evaluation of whose cancer will be aggressive, a vaccine--but I also hope that everyone remembers we do also need a CURE for those of us who didn't get lucky in our treatment.
I'll be waiting.
Whereas I can understand people wanting to feel like they are being proactive about their health--and that they have some control over their destiny, this sort of topic always makes me angry. Will cutting out alcohol help? Taking vitamins? Exercise is the key, isn't it?
If by omitting something, or by adding something else one can prevent a recurrence, the implication is that I did something wrong. Did my cancer recur because I still drink diet soda? Did it recur because my BMI is too high? Did I just not pray hard enough?
This was my response:
I refuse to believe that anything I did, or did not do, contributed to my recurrence. I've suffered enough shock/grief/anger/sadness about it without adding self-recrimination.
But now in order to maintain a healthy lifestyle I avoid:
snorting asbestos
bathing regularly in benzene
eating used aluminum ashtrays
playing in traffic
leaping into a pit of wild ferrets while dressed in a suit made of steak
blaming myself for things I can't control.
A lot of literature focuses on breast cancer prevention--early screenings, better evaluation of whose cancer will be aggressive, a vaccine--but I also hope that everyone remembers we do also need a CURE for those of us who didn't get lucky in our treatment.
I'll be waiting.
Labels: cure, metastasis, prevention, YSC
Friday, September 29, 2006
Think Before You Pink
I want to say first that I do not personally object to the use of pink to represent breast cancer awareness. I don't mind pink ribbons. I've got a pink ribbon Beanie Baby sitting on top of my computer monitor, and am eating special edition pink M&Ms which Brian bought yesterday. It makes me feel good when I realize the ribbon on the car in front of me isn't one of those red white and blue "Support our troops" ribbons (no offense, troops...y'all need to come home), but a pink one in support of ME.
However, not all breast cancer survivors are thrilled with the pink, or with the pink ribbons, and it might be a good idea to ponder why.
Think Before You Pink is one organization which raises some serious questions about the history of the pink ribbon campaign, where the funds go, what actually gets supported, and whether or not it's all just a marketing gimmick designed to make people shell out big money while feeling warm fuzzies.
I've been reading messages on the Young Survivor's Coalition bulletin boards posted by women who've had their love for pink (if, indeed, they ever had it to begin with) utterly destroyed by its association with breast cancer. One woman even wrote to comment that seeing little girls dressed in pink is now very weird and creepy. Another wrote to say that her husband had black shirts made with "cancer sucks" printed on them in teal for her family.
Try to be sensitive, and don't assume that the pink bracelet or pink ribbon ribbon pins will be welcomed by those dealing with breast cancer. The pink campaign isn't really meant for us, you see. Survivors, especially those actively battling the disease, are already perfectly aware of breast cancer.
Aren't we all already aware that cancer is bad? Can we hope for action, instead of just awareness? Can we hope for prevention or a cure, instead of old hormonal medications (I'm talking about YOU, Tamoxifen) that cause other cancers, or highly toxic treatments that destroy healthy cells in addition to cancer cells? More on that later. Right now I've got pink chocolate candies to eat.
However, not all breast cancer survivors are thrilled with the pink, or with the pink ribbons, and it might be a good idea to ponder why.
Think Before You Pink is one organization which raises some serious questions about the history of the pink ribbon campaign, where the funds go, what actually gets supported, and whether or not it's all just a marketing gimmick designed to make people shell out big money while feeling warm fuzzies.
I've been reading messages on the Young Survivor's Coalition bulletin boards posted by women who've had their love for pink (if, indeed, they ever had it to begin with) utterly destroyed by its association with breast cancer. One woman even wrote to comment that seeing little girls dressed in pink is now very weird and creepy. Another wrote to say that her husband had black shirts made with "cancer sucks" printed on them in teal for her family.
Try to be sensitive, and don't assume that the pink bracelet or pink ribbon ribbon pins will be welcomed by those dealing with breast cancer. The pink campaign isn't really meant for us, you see. Survivors, especially those actively battling the disease, are already perfectly aware of breast cancer.
Aren't we all already aware that cancer is bad? Can we hope for action, instead of just awareness? Can we hope for prevention or a cure, instead of old hormonal medications (I'm talking about YOU, Tamoxifen) that cause other cancers, or highly toxic treatments that destroy healthy cells in addition to cancer cells? More on that later. Right now I've got pink chocolate candies to eat.
Labels: awareness, cure, pink ribbon, prevention, tamoxifen, Think Before You Pink, YSC
