A Lump, the Second Time Around

It’s been four years since I finished my treatment for breast cancer—long enough for me to forget to be on high awareness mode and always take a friend when dealing with the world of hospitals and labs, even if things look relatively straight forward. After all, for four years, my routine mammograms had been clear.

Then, this past January while vacationing alone in Fort Lauderdale, I found a lump (explitives deleted). Thoughts assailed, almost simultaneously:

#1: I still have two weeks in glorious 70-80-degree weather while at home in Michigan temps are diving below zero….

#2: The lump is in the same breast that has survived three surgeries—two lumpectomies and one sentinel node removal—maybe it’s just scar tissue.

#3: What if it’s…cancer!?!??

#4 Yikes! What if I need surgery? My dad (a plastic surgeon) used to hate operating on radiated tissue. What if a radiated breast can’t heal? (Much later, after everything that follows here, my surgeon assured me that she could operate on a radiated breast, but the scarring would be worse.)

#5: More surgery on that side would no doubt result in huge, possibly life-long lymphedema in my right arm—the one I need to make art and books and support myself.

#6: What if I had to have chemo…I lucked out the first time, with just radiation.

What to do?

I decided, after some long walks on the beach, to wait until I got home in February and just get my annual mammogram, scheduled for March, a month early. That way I would relieve my mind if I was fine, and get the thing early if I wasn’t. I would remain calm and not ruin my remaining days with worry. And I wouldn’t tell anybody. Yet.

I thought, if I’m ok, why ruin my beautiful Florida vacation, and if I’m not ok, why ruin my beautiful Florida vacation?

Makes sense, doesn’t it? A simple solution.

Week One and Two

I stay in Florida, enjoy my vacation, and two weeks later, drive home.

Week Three

What follows is a 12-Step program I hope never to do again:

1) When I get home in February, I call the Women’s Center lab to make an appointment for my annual mammogram at the same place I have always gone. They say (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) it hadn’t been a year yet so my insurance won’t pay for it. I say that I thought I’d felt a lump and wanted to get my mammogram a month early. They say I need my surgeon’s orders for that.

2) So I call my surgeon’s office and I’m told (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) that they will fax the order to the lab.

3) Two days later, I call the Women’s Center lab to make the appointment. They tell me (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) that they never got the fax from my surgeon’s office and that they don’t give out their fax number to patients.

4) I call the surgeon’s office and (after ten minutes on hold, with staticky music and ads in my ear) I am told that they don’t have the fax number of the Women’s Center. What? I say. Lots of patients in this office use the Women’s Center! Well, we don’t have it. Ok, I say. Just send the orders to me in the mail. So I am told they will send it to me in the mail, after I give them my address, which apparently isn’t in my file?

5) I call the Women’s Center for the 3rd time and (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) I tell them I will bring in the doctor’s order and they let me make an appointment for a diagnostic (remember that word) mammogram, the first appointment available being in a week.

Week Four

I am still pretty calm, but I am getting irritated. How much hassle and anxious waiting can a high-risk breast cancer survivor take? I finally decide I need a support group and I share my discovery and concern with my guy and my best friend, who remain calm.

6) A week later, I still haven’t received the orders from the surgeon’s office and my appointment is in an hour. I frantically call the surgeon’s office and (after ten minutes on hold, with staticky music and ads in my ear), I am told not to worry, they are faxing it over to the mammogram lab right now. Somehow my breast cancer specialist surgeon’s office has discovered the Women’s Center fax number.

7) I arrive at the Women’s Center mammogram lab. I wait not much longer than I am usually on hold here, except there is no music or annoying advertising in my ear. A tv screen is running a video ad but I don’t look at it.

8) A very young tech with a bouncy manner takes me into the dressing room, where I change into the usual open-in-front (thankfully cloth, not paper) top gown and shortly I am in the mammogram room. It’s a different machine, I note: the new digital machine. I’m asked to tape a tiny bb to the place where I feel the lump. My breasts are then mashed between two transparent plastic plates, which the tech closes tighter and tighter with a foot pump. I don’t mind. I’ve been through so much worse. Just tell me I’m ok.

The perky tech lets me look at the pictures on digital screen. I see the bb is right in the middle of what looks like a small smiling scar. There are larger scars as well and I can see the row of staples that were used to hold the internal incisions together and are still there. I can’t see anything in any of the pictures that looks lumpish. I am relieved.

I asked the tech if she could have the mammograms read while I wait. But no, she says, the radiologist is not in. But, she says, (and this is important): “If there is a problem, we will call you in a day or two. Otherwise you will get the results in the mail in about a week.”

Do these people know how we whose lives are at stake here hang on every single word? Don’t they realize that what they say or don’t say is important? This is a Woman’s Center. This is a Mammogram Center. The last time I came for a diagnostic mammogram, I was diagnosed with cancer.

“Oh dear,” she says, hearing the word “diagnostic.” “This mammogram has not been tagged as diagnostic. If it’s not, your insurance won’t cover it, since it hasn’t been a year since your last one.” She leaves the room and comes back declaring that she has done something on the computer that has changed the tag from routine to diagnostic. Whew!

This tech, though seemingly awfully young, is courteous and kind and she lets me see all the pictures, which is a first, but she misspoke.

Week Five

9) I am feeling pretty stressed as I wait for my lab results, but I have been here before. As the days pass….day one, day two, day three, day four, day five….I begin to relax. After all, if something was wrong, they’d have called by now, right? That’s what the tech said and believe me, I was listening.

10) Day six, almost a week later (still no report in my mailbox), I get a call from the Women’s Center. I am to come back in for more tests right away. How about tomorrow morning at ten?

I stop breathing.

Somehow I manage to ask the caller if the mammogram had been positive, but she would not tell me. “I can’t give out that information,” she says. “You just need to come in for an ultrasound.”

This time, after I hang up, I lose it. Finally, for the first time, I weep. I weep just writing about it. I feel the blood in my body replaced by a gush of explosive anxiety. I call my brother. I call my girlfriend. I beg comfort from the man in my life. No one knows what to do with me.

11) Day Six of Week Five: I go back to the Women’s Center for an ultrasound. Two girlfriends have volunteered to go with me but, knowing that an ultrasound is painless, I turn them down. A mistake. When I am this anxious, I really need someone to be there, not just for support but to observe, be a second pair of eyes and ears, a witness. But I worry that I’ll break down and embarrass myself. I don’t want to be observed myself.

The tech for the ultrasound is a mature person who immediately tunes in on what I’m feeling. It turns out she is a two-year breast cancer survivor herself. I am by now having a hard time keeping it together. She does the test thoroughly and afterward I ask her if I will have to wait another week for the results.

“Probably,” she says. And I choke out, “I want to see them now.”

“I understand,” she says. “I’m not going to let you leave here like this. I’ll see what I can do.”

Not more than five minutes later (less time than I am usually kept on hold and subjected to staticky music and ads), the tech returns with the radiologist, who is looking annoyed. “Your tests are all fine,” he says.

“You mean, the mammogram was negative as well? No tumor?”

“Both the mammogram and the ultrasound were clear,” he says.

“If the mammogram was okay, why was I called back in?”

“It’s protocol,” he tells me. “If there’s a question of a lump, we have to do a mammogram and an ultrasound, followed by a visit to your doctor.”

“SO WHY WASN’T I TOLD THIS?”I ask. “Why was I led to believe that my cancer had recurred?” 

“It’s protocol,” he says.

And what was the lump?

“Scar tissue from the sentinel node dissection.”

Week Six

12) Normally after receiving good mammogram news—my “get-out-of-jail-for-another-year” card—I celebrate. I go out and party with my friends. This time, though, after calling whoever knew by now and letting them know I was okay, I still can’t stop shaking inside. I read online an article published online this very day about a study of the cortisol levels of women waiting for the biopsy results. Women who were made to wait over 5 days for their test results, whether the news was good or bad, had the same high cortisol (stress hormone) levels as women diagnosed with breast cancer. There was concern expressed that these high cortisol levels threatened these women’s resistance to disease and, if they actually needed treatment, made their recovery more difficult.

(Even without the two weeks I waited to begin this process, if I’d had to wait another week for the ultrasound results, it would have been a MONTH from my call to schedule a mammogram to the day I got my results! It’s not hard to imagine what my cortisol levels would have been then!)

This week, I find myself depressed and weepy. I do irrational things and take offense at things that, I find out later, have a much different explanation than I assumed. I come close to offending friends and clients. I work out at the health club four times this week, trying to let off steam.

Week Seven

Hallelujah, I am OKAY! At last, I am back to normal and feeling so lucky to be in this world and not re-diagosed with breast cancer. I decide it’s time I volunteered at the Literacy Center. Time I gave a party. Time I thank my friends and family for still being there.

Conclusion

•Bring a friend, especially if it’s a diagnostic test.
•Ask if there is anything you should know, such as the PROTOCOL for that procedure.
•Bring a friend.
•Insist on being treated humanely.
•Find a mammogram center that offers reasonably quick results. You’d be surprised how many centers there are within a four-hour drive—easily worth it to get that-day results—and they are competitive. Not all centers keep you waiting a week and insurance is good at all of them.

Now, I find that I really don’t mind that cold late winter weather. I’m reassured that my post-radiation treatment choice of careful diet (mostly vegan), exercise, and high quality of life really has been, for me, so far, the best medicine.

A NOTE: Yesterday I got my cell phone bill: $60 for overtime minutes, in addition to my regular bill, the first time I have ever paid for overtime minutes in two years.

A Lump, the Second Time Around…..

It’s been four years since I finished my treatment for breast cancer—long enough for me to forget to be on high awareness mode and always take a friend when dealing with the world of hospitals and labs, even if things look relatively straight forward. After all, for four years, my routine mammograms had been clear.

Then, this past January while vacationing alone in Fort Lauderdale, I found a lump (explitives deleted). Thoughts assailed, almost simultaneously:

#1: I still have two weeks in glorious 70-80-degree weather while at home in Michigan temps are diving below zero….

#2: The lump is in the same breast that has survived three surgeries—two lumpectomies and one sentinel node removal—maybe it’s just scar tissue.

#3: What if it’s…cancer!?!??

#4 Yikes! What if I need surgery? My dad (a plastic surgeon) used to hate operating on radiated tissue. What if a radiated breast can’t heal? (Much later, after everything that follows here, my surgeon assured me that she could operate on a radiated breast, but the scarring would be worse.)

#5: More surgery on that side would no doubt result in huge, possibly life-long lymphedema in my right arm—the one I need to make art and books and support myself.

#6: What if I had to have chemo…I lucked out the first time, with just radiation.

What to do?

I decided, after some long walks on the beach, to wait until I got home in February and just get my annual mammogram, scheduled for March, a month early. That way I would relieve my mind if I was fine, and get the thing early if I wasn’t. I would remain calm and not ruin my remaining days with worry. And I wouldn’t tell anybody. Yet.

I thought, if I’m ok, why ruin my beautiful Florida vacation, and if I’m not ok, why ruin my beautiful Florida vacation?

Makes sense, doesn’t it? A simple solution.

Week One and Two

I stay in Florida, enjoy my vacation, and two weeks later, drive home.

Week Three

What follows is a 12-Step program I hope never to do again:

1) When I get home in February, I call the Women’s Center lab to make an appointment for my annual mammogram at the same place I have always gone. They say (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) it hadn’t been a year yet so my insurance won’t pay for it. I say that I thought I’d felt a lump and wanted to get my mammogram a month early. They say I need my surgeon’s orders for that.

2) So I call my surgeon’s office and I’m told (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) that they will fax the order to the lab.

3) Two days later, I call the Women’s Center lab to make the appointment. They tell me (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) that they never got the fax from my surgeon’s office and that they don’t give out their fax number to patients.

4) I call the surgeon’s office and (after ten minutes on hold, with staticky music and ads in my ear) I am told that they don’t have the fax number of the Women’s Center. What? I say. Lots of patients in this office use the Women’s Center! Well, we don’t have it. Ok, I say. Just send the orders to me in the mail. So I am told they will send it to me in the mail, after I give them my address, which apparently isn’t in my file?

5) I call the Women’s Center for the 3rd time and (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) I tell them I will bring in the doctor’s order and they let me make an appointment for a diagnostic (remember that word) mammogram, the first appointment available being in a week.

Week Four

I am still pretty calm, but I am getting irritated. How much hassle and anxious waiting can a high-risk breast cancer survivor take? I finally decide I need a support group and I share my discovery and concern with my guy and my best friend, who remain calm.

6) A week later, I still haven’t received the orders from the surgeon’s office and my appointment is in an hour. I frantically call the surgeon’s office and (after ten minutes on hold, with staticky music and ads in my ear), I am told not to worry, they are faxing it over to the mammogram lab right now. Somehow my breast cancer specialist surgeon’s office has discovered the Women’s Center fax number.

7) I arrive at the Women’s Center mammogram lab. I wait not much longer than I am usually on hold here, except there is no music or annoying advertising in my ear. A tv screen is running a video ad but I don’t look at it.

8) A very young tech with a bouncy manner takes me into the dressing room, where I change into the usual open-in-front (thankfully cloth, not paper) top gown and shortly I am in the mammogram room. It’s a different machine, I note: the new digital machine. I’m asked to tape a tiny bb to the place where I feel the lump. My breasts are then mashed between two transparent plastic plates, which the tech closes tighter and tighter with a foot pump. I don’t mind. I’ve been through so much worse. Just tell me I’m ok.

The perky tech lets me look at the pictures on digital screen. I see the bb is right in the middle of what looks like a small smiling scar. There are larger scars as well and I can see the row of staples that were used to hold the internal incisions together and are still there. I can’t see anything in any of the pictures that looks lumpish. I am relieved.

I asked the tech if she could have the mammograms read while I wait. But no, she says, the radiologist is not in. But, she says, (and this is important): “If there is a problem, we will call you in a day or two. Otherwise you will get the results in the mail in about a week.”

Do these people know how we whose lives are at stake here hang on every single word? Don’t they realize that what they say or don’t say is important? This is a Woman’s Center. This is a Mammogram Center. The last time I came for a diagnostic mammogram, I was diagnosed with cancer.

“Oh dear,” she says, hearing the word “diagnostic.” “This mammogram has not been tagged as diagnostic. If it’s not, your insurance won’t cover it, since it hasn’t been a year since your last one.” She leaves the room and comes back declaring that she has done something on the computer that has changed the tag from routine to diagnostic. Whew!

This tech, though seemingly awfully young, is courteous and kind and she lets me see all the pictures, which is a first, but she misspoke.

Week Five

9) I am feeling pretty stressed as I wait for my lab results, but I have been here before. As the days pass….day one, day two, day three, day four, day five….I begin to relax. After all, if something was wrong, they’d have called by now, right? That’s what the tech said and believe me, I was listening.

10) Day six, almost a week later (still no report in my mailbox), I get a call from the Women’s Center. I am to come back in for more tests right away. How about tomorrow morning at ten?

I stop breathing.

Somehow I manage to ask the caller if the mammogram had been positive, but she would not tell me. “I can’t give out that information,” she says. “You just need to come in for an ultrasound.”

This time, after I hang up, I lose it. Finally, for the first time, I weep. I weep just writing about it. I feel the blood in my body replaced by a gush of explosive anxiety. I call my brother. I call my girlfriend. I beg comfort from the man in my life. No one knows what to do with me.

11) Day Six of Week Five: I go back to the Women’s Center for an ultrasound. Two girlfriends have volunteered to go with me but, knowing that an ultrasound is painless, I turn them down. A mistake. When I am this anxious, I really need someone to be there, not just for support but to observe, be a second pair of eyes and ears, a witness. But I worry that I’ll break down and embarrass myself. I don’t want to be observed myself.

The tech for the ultrasound is a mature person who immediately tunes in on what I’m feeling. It turns out she is a two-year breast cancer survivor herself. I am by now having a hard time keeping it together. She does the test thoroughly and afterward I ask her if I will have to wait another week for the results.

“Probably,” she says. And I choke out, “I want to see them now.”

“I understand,” she says. “I’m not going to let you leave here like this. I’ll see what I can do.”

Not more than five minutes later (less time than I am usually kept on hold and subjected to staticky music and ads), the tech returns with the radiologist, who is looking annoyed. “Your tests are all fine,” he says.

“You mean, the mammogram was negative as well? No tumor?”

“Both the mammogram and the ultrasound were clear,” he says.

“If the mammogram was okay, why was I called back in?”

“It’s protocol,” he tells me. “If there’s a question of a lump, we have to do a mammogram and an ultrasound, followed by a visit to your doctor.”

“SO WHY WASN’T I TOLD THIS?”I ask. “Why was I led to believe that my cancer had recurred?” 

“It’s protocol,” he says.

And what was the lump?

“Scar tissue from the sentinel node dissection.”

Week Six

12) Normally after receiving good mammogram news—my “get-out-of-jail-for-another-year” card—I celebrate. I go out and party with my friends. This time, though, after calling whoever knew by now and letting them know I was okay, I still can’t stop shaking inside. I read online an article published online this very day about a study of the cortisol levels of women waiting for the biopsy results. Women who were made to wait over 5 days for their test results, whether the news was good or bad, had the same high cortisol (stress hormone) levels as women diagnosed with breast cancer. There was concern expressed that these high cortisol levels threatened these women’s resistance to disease and, if they actually needed treatment, made their recovery more difficult.

(Even without the two weeks I waited to begin this process, if I’d had to wait another week for the ultrasound results, it would have been a MONTH from my call to schedule a mammogram to the day I got my results! It’s not hard to imagine what my cortisol levels would have been then!)

This week, I find myself depressed and weepy. I do irrational things and take offense at things that, I find out later, have a much different explanation than I assumed. I come close to offending friends and clients. I work out at the health club four times this week, trying to let off steam.

Week Seven

Hallelujah, I am OKAY! At last, I am back to normal and feeling so lucky to be in this world and not re-diagosed with breast cancer. I decide it’s time I volunteered at the Literacy Center. Time I gave a party. Time I thank my friends and family for still being there.

Conclusion

•Bring a friend, especially if it’s a diagnostic test.
•Ask if there is anything you should know, such as the PROTOCOL for that procedure.
•Bring a friend.
•Insist on being treated humanely.
•Find a mammogram center that offers reasonably quick results. You’d be surprised how many centers there are within a four-hour drive—easily worth it to get that-day results—and they are competitive. Not all centers keep you waiting a week and insurance is good at all of them.

Now, I find that I really don’t mind that cold late winter weather. I’m reassured that my post-radiation treatment choice of careful diet (mostly vegan), exercise, and high quality of life really has been, for me, so far, the best medicine.

A NOTE: Yesterday I got my cell phone bill: $60 for overtime minutes, in addition to my regular bill, the first time I have ever paid for overtime minutes in two years.

October 2008 completes my 4th survival year!

Yes I am, thanks to early detection (I found the lump myself), an excellent surgeon who left me intact, the usual course of radiation, and a changed lifestyle. Because the usual post-op treatment Arimidex) froze up my joints, I have ignored Big Pharma (saving over $200 a month) and opted instead for a healthy diet (mostly vegetarian) and exercise. Today, four years later, I feel better than ever and find myself living every day as fully as I can, and thankful thankful thankful. So I am celebrating life, creativity, adventure, friends, and new opportunities.

Vegan Vixen!

Last month I called a dear friend I’ve known for 60 years (who has survived breast cancer for 20) to wish her happy birthday, and she told me she’d become a vegan—no meat, no dairy. Good grief, I thought. She’s gone off the deep end.

“No dairy?” I inquired. “What about J.?”  (her breast cancer surgeon husband)

“He’s doing it too. You should try it!”

“What?” I cried. “Give up my two-gallon-a-week skim milk habit? Brie at parties? My Sunday morning egg?”

“It’s not so hard, really,” she said.

But I wasn’t convinced. It had to be hard. And I’d have to have a rocket lit under me to even consider it.

I could deal with the meat part. About nine months ago, several books inspired me to go (mostly) vegetarian, most notably The Omnivore’s Dilemma by Michael Pollan. I traded in meat for beans, exploring ways to cook beans to avoid my usually uncomfortable and embarrassing explosive reaction to them. After multiple disasters, I succeeded: Basically I double-soak all dried beans or lentils, once overnight and once on the stove. Get the details on my HealthCentral.com post called Beans: My Shape of Beef to Come. I have fallen in love with beans and rice, for which there are thousands of tasty yummy satisfying to even the critic in me recipes. And I’d eat anything I wanted when a guest at parties or restaurants, which wasn’t usually more than once a week.

But now, the fire under me has been stoked:  The China Study by T. Collin Campbell (see also my review) has fueled me with enough motivation to try eating vegan (no animal protein), but with three caveats: 1) I restrict my diet to vegan (plant-based) only at home;  2) I keep my morning coffee cream, and 3) I get to reconsider in 3 months.

I’m going to blog my successes, failures, discoveries and frustrations right here on my breast cancer blog. Want to try this with me? If you’ve read The China Study and are convinced that a plant-based diet is a good idea for breast cancer survivors, please email me and let me know your issues and discoveries. Also let me know if I can share your comments or if you’d prefer they remain between us.

And a special thank you to Marisa Acocella Marchetto, author/artist of Cancer Vixen (another must read for all us breast cancer people—not just survivors, but the friends, family and health professionals who deal with us) for inspiring my “Vegan Vixen” title. I really love her work. My blog fans can read my review of Cancer Vixen here, and don’t miss Marisa’s fabulously illustrated new breast cancer blog.

Click on the image to enlarge it.

Mary B’s Illustrated Breast Cancer Blog moves to Beaver Island Arts!

Ive never run out of ideas for my health blog—right now about six of them are waiting for attention—but I’ve tired of thinking about breast cancer so much of the time. It’s been two years since my treatment and I’m feeling like myself again. My prognosis is great, my checkups all good news.

So I’m off and running this summer, to do numerous art shows. And I’ll be painting Lake Michigan again—seven weeks spread out over five months—to produce Lake Effects III, the summer and last poster in my Lake Effects series. I start that project on Saturday! I can’t wait to spend a week doing nothing more than paint, walk, and look for mushrooms (it’s morel and oyster season at last!).

So please stay tuned. I’m going to do fewer breast cancer blogs, but I’ll now have time to include cartoons and illustrations, review my favorite breast cancer websites and blogs, give my take on new techno wonders like MRIs and digital mammograms, and, well, play. Remember play? It’s good for your health!

The picture here was taken at one of my book club meetings by my dear friend Mary Bush, who runs an artsy clothing shop in Saginaw called Glad Rags. Never been there? You’ve missed the ultimate in vintage/cool couture.

Please let me know your questions, responses, suggestions and, of course, praise. Just email me at mblocksma@yahoo.com.

Cartooning Lymphedema

One of the possible side effects of a sentinel node dissection and the removal of underarm lymph nodes can be a condition called lymphedema. Go to Mary’s Breast Cancer Blog for March to read my blog entry on this adventure. Find here my graphic account…I got my hand wrong—I’m right-handed, not left—but hey, you get the idea!

I’m still working on the name for my graphic blogs, as well as a particular style. But it’s fun! You can email me any suggestions.

Click on the image to enlarge my illustrated version.

BLOGSMA DEBUT

I created this particular Blogsma in reaction to an Oprah show which I watched the day after finishing a graphic memoir (and who inspired me to do this one) written by a woman who died of breast cancer which had metastacized in her brain. I was mad at Oprah’s glib solutions to the complex problems of life, which although they have value and I really do like Oprah’s spirit, trivialize the hell that so many people go through.

One of my readers felt that anyone suffering from cancer would take offense at this blog, but I hope that won’t happen. I did it in their defense, and in mine. I welcome your comments and suggestions in this new venture.

I’m considering putting Blogsma on a separate website or perhaps youtube.com or flickr.com. What do you think?

Click on the image to enlarge it.

Click If You Love Mammograms!

There are so many hoaxes out there that perhaps this one has been suspected as well. However, according to Channel 5 KOKO in Oklahoma, this one is the real thing. Snopes.com, a website that attempts to verify the virtual virtuous and warn against the viral, has the story on the mammogram click program.

The email tree–the send-this-email-to-ten-people sort of thing–which has been used to popularize this site, isn’t my thing. I hate email trees. But I’ll happily put this on my blog:

All you have to do to help provide a free mammogram to a woman who can’t afford one is click on this link: http://thebreastcancersite.com. The hype, however, much like those airline “miles” issued by credit card companies, is a little misleading. It takes not one click but 45,000 clicks for just one mammogram to be donated. Furthermore you have to click not once but twice–once to get to the site and then click on the mammogram donation button, which sends you to a page of ads.

It’s not so much to do anymore, since the Internet speeded up. Unless you’re on a clunky connection, two clicks a day may be tolerably worthwhile.

Report Arimidex Side Effects!

It’s not hard to do. Just go to http://www.fda.gov/medwatch/report/consumer/consumer.htm

and follow the report instructions. We need our voices heard! Too many health professionals have been dismissing these side effects, and I’ve just heard from too many miserable women to believe that it’s all in our heads. I know some of these women personally, so it’s not just coming from this blog.

Arimidex Feedback

The website in questions is http://www.askapatient.com/viewrating.asp?drug=20541&name=ARIMIDEX I have also gone to http://askapatient.com to look for patient reactions to other drugs, such as a particular statin, Tamoxafin, and Prevacid. Since I registered my own problems, I have heard from about ten women who have suffered similar side effects to Arimidex–joint problems and aching so severe that one can hardly get out of bed, much less function in life. I didn’t realize that I had registered my email address and was contactable. The women taking Arimidex and wishing they weren’t were agonizing between quality and quantity of life.

Believe it or not, I have had health professionals deny any reports of Arimidex side-effects. A nurse in a breast cancer surgeon’s office declared that she had never heard of any problems with Arimidex. One of my doctors (we get lots of docs in this adventure) emphatically insisted I continue taking it, while another emphatically insisted I quit immediately after viewing my poor bone density test, which both doctors had seen.

I did a lot of research before going off Arimidex and refusing, as well, Tamoxafin. I looked at the biggest study involving over 20,000 participants–I’ll have to look it up again and will report the results–and found that the bottom line was not nearly as scary as the way the statistics were interpreted.

The medical news uses statistics for scare purposes, and to make the news look newsier. Here’s what I discovered. Let’s consider a theoretical study of some new Big Pharma medication which proports to prevent a breast cancer recurrance, say 20,000 women. If we’re lucky, there will be a specific age range, so let’s say these women are between ages 40 and 65. 10,000 are on the med, 10,000 are taking a placebo. Let’s say that after 10 years, those on the med suffer 300, or about 3%, of the women suffer a recurrance, and 600, or about 6% of the women on the placebo suffer a recurrance. There are several ways to report these findings:

 One way to interpret these figures is to say that, even though there is only a 3% greater risk to women on the placebo, it is also correct to say that women on the placebo suffered twice the recurrances of those taking the new medication. This statement would be true no matter how many people were in the study, 100 or 10,000 or, as in one important study, 40,000. This  important discovery I learned while trying to explain how odds and risk work in my book about the measures we have to deal with in American life, Necessary Numbers. The subject was so complex, however, that I had to drop that chapter.

There is a good reason why many very very smart Ph.D. candidates in the sciences frequently flunk statistics. It’s tricky stuff, and before I listen to scare news or scare talk from doctors, who probably don’t really understand statistics either and are courted by gorgeous sales reps who sashay into their offices without waiting–how often have you seem this?–look for what are called Landmark Studies, and study the bottom line: How many in the study? Does the selection of participants really apply to you? How narrow was the study? Was it a double-blind study? Who conducted the study?  What are the real result in numbers, not risk percentages. 

To hedge your bets at any cost is a choice. I am not recommending that anyone live dangerously…I just think that believing in your choices and living each day with as much happiness as possible is right up there with the great cures of  our time, but how do you measure that?