Predicting breast cancer recurrence five to fifteen years out

When I was diagnosed with breast cancer seven years ago, I heard about the Oncotype Dx test, for which I was not eligible (for some stupid reason I can't remember) that would help decide whether chemotherapy was necessary. It has now been available for ten years and has been shown that it can help predict late recurrence of breast cancer - which is defined as five to fifteen years out from the initial diagnosis.

I think this is real progress in reining in cancer. [I wasn't going to use the word battle or war or anything like that. I had to think and settled on reining in.] This ties in with extending the use of tamoxifen for ten years to obtain better results.

"As recognized by ASCO's guideline update, recent studies have shown that extending tamoxifen treatment for 10 years is associated  with better outcomes, however, we still need better tools to identify who those patients are," said Norman Wolmark, M.D., chairman of the National Surgical Adjuvant Breast and Bowel Project (NSABP). "This study confirms that Oncotype DX can help better define who is at greatest risk for late recurrences and the potential to benefit from extended tamoxifen, as well as those who are at lower risk and will likely have less absolute benefit from extended tamoxifen and, thus, could be spared prolonged exposure and risk of long-term side effects." 

Now of course, I am still do not have the criteria to belong to that group that was in the study but it is nice to know that there is progress in knowing about who is more likely to have recurrence. This in turns allow them to be better followed to catch any recurrence early.

look what we did!

Remember my secret happy project?


We did it! We yarn-bombed a corner of my neighbourhood. We were 10 knitters, 14 installers and one videographer. It was so much work but so much fun. I dare you to watch this short video without smiling:


   
(video: Mark Blevis)


There are lots more photos up at our web site, Frivolknitty.com. It was so much fun - we're already planning for the next time!


An observer pointed out that three of the knitters/installers involved in this project have lived with breast cancer. I don't think it's coincidence that we all wanted to share in a little frivolity.

Going for the heart strings, of course

There was a new study (because we need a new study so the researchers don't have to polish up their CVs -  that's resume for the non-technical) that says there are more and more ads for cancer treatments and cancer treatment centers. Their results showed that:

"A systematic content analysis of these ads found that the content is sharply directed at a would-be patient’s heartstrings:

  – 85% made emotional appeals to consumers
  – 61% used language about hope, extension of life, or a cure
  – 52% touted innovative, or advanced technology or treatments
  – 30% evoked fear by mentioned death, fear, or loss

Nearly half of the advertisements included patient testimonials, but only 15% included a disclaimer about patient outcome. No advertisements described the outcomes a “typical” patient may experience. Failure to disclose this information is a violation of a Federal Trade Commission mandate, the report notes."

Only 2% of the ads disclosed the risks and 5% disclosed the costs. Basically, they skipped right over the parts that say you might be throwing up as you are going bankrupt... but I digress.

Emotion based advertising is a key target in the advertising world. Feel their pain and you can make them open their wallets. But evoking fear of death is kind of creepy. If you don't try this, you WILL die!

"“Clinical advertisements that use emotional appeal uncoupled with information about indications, benefits, risks, or alternatives may lead patients to pursue care that is either unnecessary or unsupported by scientific evidence.”"

The researchers conclude by saying that further research is needed to see if this emotion based, direct to consumer advertising is contributing to the sky rocketing cancer care costs in recent years. (Job security.)  If it is promoting misinformation by omission of key information for consumers and playing on their emotions, its not a great use of the money.

My thought is all this advertising is clearly contributing to pharmaceutical company and medical center bottom lines through additional costs. Which in turn is bumping up their overhead. The kind of advertising that is done is not cheap. So maybe we should just get rid of it - just as we got rid of alcohol and tobacco advertising in the past and their costs would go down, and then our prices. But that would be a pipe dream on our part.

in translation

The cancer centre has implemented something new. When patients check in for treatment, we're asked to fill out a questionnaire related to our well-being (it has some acronym but I can't remember it). We're given the option of filling it in on a central computer but I'm really squeamish about germy public terminals. I always ask to fill the thing in manually (furthering my feeling that I am more of a Luddite than some of my seniors).

Filling out the form involves reading statements such as "I am in pain" and then circling a number between 1 (no pain) and 7 (excruciating pain - or something like that). Most of my numbers were very low except for the ones about my emotional well being and sleep habits. My answers resulted in the following conversation with the well-meaning nurse who checked me in for treatment:

Nurse: 

"You're depressed. Why?"

Me: 

"I'm just a little blue. Five years of doing this is a long time." (Translation: "I'm pissed off and fed up and I have survivors' guilt.") 

"I'm seeing someone at the psychosocial oncology centre." (Translation: "I don't want to talk about it with you, in front of the all the strangers in the room"). 

"The crisis is over and now it's all hitting me." (Translation: "I think I have PTSD. Did I mention that I'm pissed off and fed up?")

Next time, I'm stuffing the damn form into the bottom of my purse.

How much would you pay to heal yourself?

Current pharmaceutical pricing of new cancer drugs are sky rocketing. $100,000 for a new medication designed to extend life by months or weeks is crazy. Here is a very long article on cancer drug pricing and all the issues surrounding it. I say read it, its worth it to get a better understanding of the issues surrounding the high prices.

My few points are:

• Pharma companies spend billions on research, required testing to meet FDA standards, and then can only expect to reap the benefits through the length of their patent which is ten years.
• If they lowered prices, their share holders would be unhappy and less likely to fund additional research for new drugs which would result in fewer new drugs in the future even though the short term benefit of reduced pricing would benefit patients. But the shareholders would be happy.
• In their research process, numerous discoveries do not make it FDA approval and are tossed, throwing out years of research and billions of lost costs.
• And the most appalling: "The high cost of current cancer therapies is at least limited by the relatively small patient populations they treat.  Next generation immunotherapies, including CTLA-4, PD-1 (programmed cell death), and chimeric antigen receptor therapies (CARTs), appear to deliver much improved outcomes (in some cases including complete remissions) with limited side effects – and may also be used to treat many more cancer types and much larger patient populations than current therapies.  Given their inherent value to patients, they could easily command prices well in excess of $100,000 per course of treatment." Please reread that last sentence: Given their inherent value to patients, they could easily command prices well in excess of $100,000 per course of treatment.

I can accept that lots of research can end up in the trash bin if drugs do not perform as expected. I can buy that happy, rich, healthy share holders help companies stay on track. But I cannot and will not accept pricing based on the 'inherent value to patients'. That is basically saying that they are charging what they think a patient would pay.

This is like saying when you break a leg, how much would you pay to have it set and mending with pain under control? At the second of pain, you would probably pay $2000 for that first shot of morphine....

That's insane. Go get some morals and charge patients correctly.

cut through the crap

All the junk science and bogus claims¹ about breast cancer are really getting to me these days. What bothers me even more is that some of the denial and outright obfuscation comes from sources we in the mainstream are supposed to trust.²

How do you decide what's real?

With so many conflicting messages about lifestyle changes, what advice are we to follow?

And when are those in a position to do anything going to truly investigate the environmental links to breast cancer? (I know the answer to that one. Probably never.)

It's enough to send a girl back to bed. It's pretty dark under the duvet. Maybe I can hide from the world for a while and pretend all that annoys me doesn't exist.

That's not a terribly constructive solution though, so more and more I'm turning to all the good stuff on the internet. There are lots of smart people advocating for themselves and others. And, thankfully, there is always Breast Cancer Action.

Image courtesy Breast Cancer Action.

I just signed up for a"Webinar" called "Separating Hype from Hope. Breast Cancer Media Literacy." You have to register in advance but it's completely free. There are two sessions, one on Wednesday, May 29 at 10am PST/ 1pm EST and one on Thursday, May 30 at 2pm PST / 5pm EST.

The agenda includes the following:

•  The larger picture of media literacy
• What is right and wrong about health coverage in the media
• The current state of journalism and its impact on consumers 
• How industry and pharmaceuticals influence health news reporting
• How an issue is considered newsworthy
• The 10 criteria for medical stories with specific breast cancer focused examples 
• How to give reporters feedback
• How you can get involved

Sounds like a breath of fresh air. I'm in.

Courtesy xkcd.com and thanks to a friend for this timely alert.

¹ The article that I linked to was at the very top of the page when I Googled "cure for cancer." Ugh.

² For example, this is from an article, "Barbara Brenner, breast cancer iconoclast, dies at 61": 

"Dr. Otis W. Brawley, the chief medical and scientific officer of the American Cancer Society, called Ms. Brenner “a dear friend,” but added, “I didn’t agree with her, probably 40 or 50 percent of the time.”

One point of difference was over whether environmental factors play a major role in cancer. Ms. Brenner thought they did; Dr. Brawley is skeptical."

kitchen conversation (he's so, so right)

My spouse (after listening to lengthy rant #342 yesterday): "Not to excuse that person's bad behaviour, but a lot of things piss you off these days."

Me: "True."

Spouse: "Oh! We forgot to put the compost out!"

Me: (String of expletives, unprintable in a blog my children might read).

Spouse (Meaningful silence)

Then we both burst out laughing.

I need to get some perspective.

But at least I can still laugh at myself.

Sexist biology

Research on mice and other animals has historically been done on male lab mice. Because the female lab mice's cycles might mess up the scientific research. Hmmm...

This one makes me think. If all medical research is done on males, of course it is going to be biased. Just like when all legislators are male, women's rights lag.

So why the controversy? This has been a long running problem. As a layperson I have been aware of this for a few paltry decades. But now it is hitting the forefront as feminist biology is interfering and causing a few ruffled feathers.


So here's my layperson take on this. If all research is done on male mice so the little bitty mouse girly cycles don't interfere with the results, why do they think they can extrapolate and start using their findings on female anythings - from mice to humans - without complications.

It is known that some medications have different effects on males and females (take Viagra for the obvious example). Also at the end of years/decades of expensive research, the drug companies say they still need more years/decades of expensive research because their research didn't cover all potential groups who might benefit from the drug.

I know its a lot more complicated than that but if the basics of the research start off skewed, aren't the results going to end up biased? Let's start with a level playing field here.

only love

A couple of weekends ago, my family spent the day in Prince Edward County, celebrating my father-in-law's 75 birthday. It was a wonderful day and we were all pretty tired on the long drive home. 

Since the kids both had there headphones on, I started looking through my ipod for music I hadn't heard in a while. I decided I was in the mood for PEI's Lennie Gallant (did you know that practically every second person on the East side of PEI is named Gallant? It really is the name on every other mailbox).

As we listened, Tim and I remembered that one of our first dates was a Lennie Gallant concert at Artspace in Peterborough. I will never forget that evening. Lennie definitely has a special place in my heart.

As we listened, I remembered that, after I quit a job many years ago, I played a song of his over and over in my office. I even had the lyrics taped to my computer. For my last three weeks in the office, I listened to it many times a day.

I thought it was an angry song that I used to bolster myself through a difficult time. I couldn't recall what it was but as the first notes came through the speakers, I remembered.

And it went like this: 

"Only love will guide us through this time
As long as there's one flame
We have a lifeline"

I was so surprised and pleased to be reminded that, at at time when I was very angry, I was affirming to myself that love would get me through.

I wrote this post in my head that Saturday night in the car and then kind of forgot about it. But now, as emotions are running high around the Ontario election, I feel the need to remind myself what matters.

Love isn't the only thing we need to effect real change but it is the most necessary ingredient. We can't get anywhere without it.

generation gap

On Tuesday, as I waited at the Heart Institute for my regular echocardiogram, I had the following brief conversation with the older gentleman sitting beside me.

Me: Is that a Playbook?

Him: I don't play! This is an ipad!

Me: Oh. I was just curious about the Blackberry version of the tablet.

Him  (scornfully): Do you have a Blackberry?

Me: I do.

I didn't bother explaining that I don't find touch screens to be intuitive and that I prefer an actual keyboard for sending emails and texting. Instead, I pulled out my knitting, thus eradicating all doubt that I was the Luddite in our conversation.

maybe it's the demerol

Or post-chemo brain rot.

But I loved this:

Into the Wind

For today's training ride I had a lot on my mind.  A Greek Chorus had settled into my thoughts like fog and I spent the better part of  yesterday cutting through one mess after another.  
       In the last ten days I've attended two funerals, (leukemia), was shocked with the sudden diagnosis (high risk lymphoma) of my nephew's 13-year old friend, was disappointed when I didn't receive a fellowship for a conference I wanted to attend, gladdened when another pro I admire contacted me, and traveled to Milwaukee with DH where his extended family met to celebrate a graduation.  There, I danced with our six-month old grand-nephew, who I met for the first time. Awesome.
       I was thinking about all these things -- and especially Thomas, the 13-yr old with lymphoma, who starts chemo today -- when I took off.  My regular training route is some 26 miles.  The route manages to encompass each and every hill we have in The Woodlands and just as many stop signs and stop lights.  The heat was already well over 85 degrees, the humidity was up and for the first part of the ride, the wind was at my back. A strong wind.
       Then it dawned on my me that at the halfway point I'd be turning back and into the wind.  Images of what  that's like, with the sun beating down on my head and radiating up from the pavement, dust flying into my eyes and sticking in a coating of sweat and sunscreen, and my energy draining, started to slow me down.  I'd made the mistake of doing a few hill intervals then sipped the new, low calorie Gatorade. Suddenly the artificial sweeteners and intense effort combined made me gag. I spit the Gatorade out,  lightened my gears and lightened up. I decided to change my tune. Completely. I'll often use a mantra while cycling and today's was this:  Into the Wind.  Focus. Focus. Focus.  I kept that rhythm up until the negative thoughts dissipated. I didn't deny them, or push them away. I remembered that difficulty can only be encountered once you admit it exists.
         Wind is wind, nothing more, nothing less.  I'd learned to cycle with it a few years ago so it no longer is a matter of not being able to complete a ride.  Now it's about cycling with intelligence.  But learning to cycle into the wind takes time, and patience.  Sometimes it's discouraging to lighten the gear, up the spin, and drop the power intensity, and up your cadence.  But you do, one spin after the next.
         And that's when I realized -- since I'd dedicated my ride to Thomas -- that my upset was about Thomas.  He's headed into the wind now.  Every person who's diagnosed with cancer, or experienced loss from  grief, has a time when they they know their moment is now.  Headlong and face first. That's when it's our turn to remind them that faith is stunning. And that God will reveal something beautiful that you've never realized before.

Blessings,
Jody

Taking all the fun out.

Cancer has a way of taking all the fun out of life. They cut you up, they poison you, they burn you, and through all that they make you feel like crap. You are tired, trying not to throw up, weak, have the blahs, want to sleep and more. Then you finally start to feel better after treatment and want to return to a normal life.

Then they say don't drink because it can help increase your rate of recurrence. This is along with the advice of not to get fat because that can do the same thing...

It takes all the fun out of everything - don't get fat, don't drink, but you are fine. Big raspberry to that news!!!

Barbara Brenner: a real hero

A formidable woman passed away earlier this month. Barbara Brenner was the former Executive Director of Breast Cancer Action and an articulate and out spoken advocate for change. Her voice cut through a haze of pink, raising awareness of corporate exploitation, pink ribbon crap and the environmental causes of breast cancer. She was a real hero, who died way too young.

My friend Tamara sent me this excellent article from the New York Times. She drew my attention to the last line, a wonderful quote from Suzanne Lampert, Ms. Brenner's spouse of 38 years:

“I always told her that I would make sure her obituary said she died after a long battle with the breast cancer industry.”

Retaining the sense of control

That sense of having some control over your situation goes a long way often - particularly in the decision making part of a cancer diagnosis. It sounds like common sense but for some reason we needed a study to prove it to the scientists (and because we need more studies to keep the scientists busy).

This was published in the recent issue of Cure Magazine (which if you have cancer and do not read it, you really should - online or paper copies on the mail are free). As part of the many stressors that accompany cancer, being part of the decision making process where you can learn the different options and their potential impacts and side effects. It gives the patient back some control over their situation.

Why didn't this happen sooner???

Because

Photos from tornado ravaged Joplin, Missouri posted today by @TheAtlantic via @InFocus. The entire collection can be seen at:  http://su.pr/33xlI0

Because you know, as much as anyone, how easily your world can change in a moment's notice please keep the people of Joplin, Missouri in your thoughts and prayers.  

Not only has their world changed, their world is gone.  Gone.

From USA Today:  "How to Help Victims of the Joplin Tornado"

Peace to you and yours.

jms 

drugs are usually > major surgery

Catherine Brunelle, who blogs at Bumpyboobs.ca shared the story of what happened when she was diagonosed with metastatic breast cancer in Ontario:

"I would be put (back) on Zoladex, I was told, which is a drug that puts your ovaries to sleep. Zoladex isnot covered by OHIP. The oncologist wasn’t sure if it would help, but he figured we should try that first and foremost before doing anything else. Except. . . except that monthly shot costs about 500 bucks a pop. Or I could pay 1500 a go and get the three month shot.
But insurance would pay for it.
Right?
…
Oh wait, you don’t have insurance? Well then, you need to have your ovaries removed via surgery.
!!
That is seriously what I was told. And if this post seems a bit fragmented in pace, it’s because to this day I’m stupefied by the solution to my struggling to afford medication – cut out perfectly healthy pieces of my body, despite there being an effective pill that could do the same thing minus the traumatic surgery."

This is mind-boggling. Being submitted to unnecessary surgery at a much higher cost to the system than covering the drug would have been. And at a much greater risk to the patient. 

Ultimately, Catherine was able to qualify for Trillium but with a significant deductible - one she would never have had to pay if she opted for surgery or another kind of treatment.

Catherine supports the campaign at FairCancerCare.ca. She's signed our petition and is now helping to spread the word.

Will you join us?

P.S.: Catherine is also a novelist. I've read her book and it's lovely. You should check that out, too.

Changing doctors...

I am not one to doctor shop or doctor hop. But I did make a change to my doctors yesterday. I see a psychologist and psychiatrist for depression and anxiety - how is your brain after all sorts of medical crap.

The PhD had recommended I see an MD a few years ago and she recommended one who was not available. So I went with Dr S instead. I was not impressed. She has no people skills. I stuck with her because I felt that I should give her a fair chance. A few years later I am not impressed still. So I bit the bullet and consulted with the PhD on who to go with. Now I'll be seeing a Nurse Practitioner instead.... I don't really care as long as my meds interactions are monitored closely which is my real problem.

My only real doctor concern these days is that one of them might retire and I will be forced to make a change...

Ten Things You Can Do Now to Fight Breast Cancer

Earlier today I learned that my  friend's 22-year old niece was recently diagnosed with breast cancer.  As a survivor myself, hearing about the disease doesn't often shock me.  But this did.  

As you start this Memorial Day weekend, take stock in all you are and have.  Here are ten easy things you can do -- starting today --  to fight breast cancer:

1)  Do everything in your power to stay physically, emotionally and spiritually healthy.  

2)  Know your own risk factors and move proactively to combat them.

3)  Understand that "breast cancer" is not a single disease but  many. There are various types, characteristics and qualities.    

4)  Remember that the majority of women are living well five, ten, twenty, thirty years after their original diagnosis.  You'll know you're cured, my oncologist told me, when you die of something else.

5)  Participate in research that advances understanding and origins of the disease.  Pioneering surgeon Dr. Susan Love's group, Army of Women -- www.armyofwomen.org -- is currently seeking volunteers for studies that require very little of your time.  Please visit www.armyofwomen.org and sign on.

6)  Another study the Sister Study, is now underway.  Enrollment closed in March, but this will be a landmark investigation.  To date it is the ONLY long-term study of women 35-74 who have not had breast cancer but have a biological sister who has.   I am proud to tell you that my sister Megan, is a participant.   We both hope this effort will help pinpoint what (and  if) environmental factors may contribute to the disease.

7)  You can eliminate a fear of cancer by taking action;  even something as simple as participating in a walk or run for Race for the Cure.

8)  Mom was right on the fruit and vegetables.  Enjoy them!  Your Mom may have missed the boat on processed foods -- but you don't have to.  Evidence also points to the importance of Vitamin D in healthy cell functioning.  If you skip dairy, please ask your doctor or a nutritionist what the best supplement for you might be.  

9)  Visualize what this world would be like without cancer.  Wow.  Let's use that hope to continue our advocacy. 

10)  Breasts aren't everything.  Life is.

Enjoy your weekend.  LiveStrong!

poignant and powerful

This past week end, I attended my niece's 13th birthday party. It was a really big deal (over 100 guests in attendance), with great food and a DJ. We all had a great time.

I spend a little time on the dance floor (when the era was right. Music from the 60s to the 80s tends to call my name). At one point I noticed my spouse looking over at us rather intently. When I asked him later he told me that he was having a "poignant moment."

We were three strong women, all mothers, all activists in our own way and all at different stages of cancer survivorship. And we were tearing up the dance floor. We were smoking (if I do say so myself) and not just as cancer patients, not just as women over 40. We were three women who loved to dance and who were having a great time.

I remember thinking, I really love dancing with these women. And when I was on the dance floor, I didn't think of cancer at all.

This is stupid

Why are patients with Medicaid diagnosed with breast cancer later than those with other insurance? This is our national health insurance for those without other insurance and it does not provide screening mammograms or educate its patients on the need for them?

"Stage II breast cancer was more likely to be diagnosed in Medicaid patients than any other insurance designation, including self-pay. We suspect this is the result of lack of use of screening mammograms or lack of access to care altogether. Further research needs to be performed examining the time course of diagnosis in the advanced-stage population. Surveying patients diagnosed with advanced-stage breast cancer as to whether they were undergoing age-appropriate routine screening or if they had impediments to gaining access to medical care would reveal possible areas for improvement in the healthcare system. It would be interesting to examine the barriers to care according to insurance status as well."

Stupidity at its finest. In the 21st century no less.

brain slurry and eye candy

I seem to still be recovering from the weekend, with a brain full of mush. For those new readers I picked up after my post on Angelina Jolie - you might want to come back tomorrow.

Here's some of the random slurry from my brain:

Speaking of slurry, my 10 year old's baseball team voted on a name over the weekend. The results came in yesterday.

After one failed experiment, I made my own eye makeup remover yesterday. I don't wear makeup very often but when I do, I want something that will take it off without leaving me with more wrinkles and fewer eyelashes. My second try yielded great results - Burt's Bees baby wash, olive oil and water. It wasn't an original recipe or anything, I'm just thrilled that I was able to avoid buying a small, expensive bottle of something I was convinced I could make myself.

Finally, we had our Mothers' Day on Sunday (delayed because half the family was at the Toronto Comic Arts Festival last weekend). Pancakes and Star Trek Into Darkness were my two requests and they were happily fulfilled. The pancakes were delicious and the movie had Zachary Quinto, Simon Pegg and Benedict Cumberbatch. 
I loved every single second of Star Trek...

SPOILER ALERT!!

It was fun, fast-paced and had snappy dialogue and lots of nostalgia. Also did I mention Zachary Quinto, Simon Pegg and Benedict Cumberbatch? 
It wasn't until I got home that I started to brood about the fact that there don't seem to be any women running Starfleet. And the movie fails the Bechdel test.
At the time, I didn't even notice. I blame it on Quinto, Pegg and Cumberbatch.

has anybody seen my boob?

As anyone who has ever been to my house can attest, the place tends to be a total disaster pretty cluttered. We lose stuff all the time, only to find it months or even years later, after it's already been replaced.

But I have to admit that never in my wildest dreams did I ever think I'd find myself typing this sentence: 

I can't find my prosthetic breast.

We've actually been making some inroads in terms of beating back the clutter. But some rooms are getting worse before they get better. And our bedroom is complete tip.

Now admittedly, I don't wear my prosthesis all that often. But there are days when I want to fly below the radar. There are clothes that just look better when they're symmetrical. And I haven't seen my fake breast for weeks.

Could I have absent-mindedly stuck it in a drawer that I haven't checked?

Could it have become mixed up in the bags of clothing destined for donation?

Could it be under the mounds of clothes yet to be sorted?

Could I have left it somewhere?

It's a mystery.

If you find it, please let me know. 

Or just leave it in my mail box.



Update May 26: We found it! It was in a suitcase. In our bedroom. From a trip on which neither I nor the boob were in attendance. I think I took it off one night and too lazy tired to put it away, popped my bra with the boob still in it, in the open suitcase. Then, the suitcase was closed and left. Three weeks later, when my love finally unpacked - he found my prosthesis. Mystery solved.

back and back

I am home after a lovely, packed extended week end away.

I also pulled something in my back getting my suitcase off the train as I arrived in Ottawa. It hurts.

I have a bunch of things I want to write about here (my week end, some thoughts on this whole book promoting business, two book reviews and a couple of other things) but today, I am too sore to sit still for long.

Maybe a gentle walk will help.

One Berry at a Time

All right.  I will confess.  

For lunch I had graham crackers (two) spread with left-over icing.  And for breakfast? The last, very lonely piece of cake, calling out from the frig.   The rest the cake went home with last night's guests. 

Yesterday I made this heavenly creation -- Strawberry Cake -- for a Silpada party I hosted for my friend Jullie Jones.  She is someone you'd love to meet and have as a friend.  She is sincerely upbeat, naturally funny, honest, smart, and with a faith that is something to behold. And since I'd rather enrich a friend than some meaningless chain or department store I made time to plan a party, cook and invite some friends to stop by, nosh and play with jewelry. How much better can life be?   

First, I took pictures of the jewelry and forgot to get a photo of the cake.  Nobody's perfect. Jullie made an incredible display that featured all the necklaces.  Yum.  She showed us how to pick one foundation necklace, then layer it with subsequent strands for different outfits and looks.  The array of colors went from earth stones and bronzes to rose and of course, lovely freshwater pearls. Very, very nice. Naturally there were coordinating  bracelets,  earrings and rings.  One big plus of the line is a life-time guarantee.  

Most of us were overwhelmed by the all the possibilities, not to mention the incredible spring evening and the opportunity to see each other again.  We oohed, aahed, felt the cool smooth stones, jingled bracelets, ran back and forth to the mirror to look, and ate. Oh, did we.

Back to the cake.  This was a gem I found on one of my favorite cooking blogs, 

The Pioneer Woman, by Ree Drummond.   I saw the recipe and knew it was a winner, a spongy vanilla layer soaked with strawberries and smothered with cream cheese icing.  For fun I combined strawberries and blackmerries.  You mush them up and let them soak into the cake.  I cut some of the fat content down with neufathchel cheese instead of the real deal, without one peep of "gee,  this is only 50% fat instead of 75%!"  Did anyone care?  No.

What a way to welcome summer!

All the best,

jody

The family that tattoos together stays together

 My cousins Elana, Michelle, Maria, Heather, Rosie,and Megan, my nieces Nicole and Jess, my sister Lori, my DAD and myself all got infinity tattoos on May 18th. They have the words "mia familgia" in the center. We don't need a family picnics or cook outs, we don't have to send cards or call every day. We stand by each other through hard times, crazy times, funny times and tattooing times. Whether you laughed while getting it, cried, swore like a banshee or found it crazy you did it with pride. You did it from love, you did it for support, YOU DID IT, now who wants another??
This princess has the best fucking loud ass Italian family on the planet! I don't think Halo Tattoo or DJ Rose will ever be the same. MIA FAMILGIA AMORE 🇮🇹💗

Life expectancy thoughts

You get diagnosed with cancer and saving for retirement gets lower down the list of important things to do. Then you get diagnosed with cancer again and it really becomes less important and sometimes even slips into the category of  'why bother'.

But then you bounce back and start thinking long term again, slower than before, but still making plans seems worth while. Or should I just save my money and have a really huge party for my memorial service propped up in the corner in a casket?

Life expectancy charts are for other people because with a couple of cancer diagnoses and friends dying from cancer around you, your life expectancy is different.

That is the little chain of thoughts in my head.

Then I find out that rheumatoid arthritis no longer affects life expectancy as much as it once did but can put a damper on it.

Then I found an online life expectancy calculator. It does not ask how many times I have had cancer only if first degree relatives have had certain types of cancer. It says I have a 75% chance of making it to 83, a 50% chance of making it to 94 and a 25% chance of making it to 102. But since it does not take into account all my health issues, you may call me skeptical. 

So where does that leave me? I don't really know. I'm still here and I guess I am happy with that.

"none of us knows when we are going to die"

On April 25th, Alaina Giordano lost custody of her children. A North Carolina judge ruled that her two kids need to move to Chicago to live with Giordano's ex-husband. She based this decision, in large part, on the fact that Giordano has Stage 4 breast cancer.

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I can't be articulate about this story, except to say that I work very hard to make sure that my kids will be all right- no matter what happens. I wish I could protect them and all those who love me from the realities of cancer. But do I think that cancer makes me a less fit parent?

Not on your life.

Want to read more?

I first read about this on BlogHer, where Jenna argued very articulately that anyone who has ever been ill or ever might be should care about this story and the frightening precedent it has set.

My friend Judy (from Mothers With Cancer) wrote a beautiful response called "We Are All Terminal." 

You can read Alaina's own words on her blog, Beauty in Truth.

I couldn't find a single post or comment by anyone who agreed with the judge's ruling.

For that, I'm grateful.

Right to try laws

I have mixed emotions on right to try laws. These are laws which hope to circumvent federal laws and get drug companies go make new and experimental drugs available to patients who are looking for that one last chance, when all other possibilities have been exhausted.

Colorado, Missouri, and Louisiana have already passed these laws due to strong social media programs.With right to try, the patient needs a prescription or recommendation from their doctor for th e new drug that they take straight to the drug company.

It sounds like a good idea for patients who are looking for that last chance. There are patients who have benefitted from these last chances but here are the issues:

• the FDA already has a program for compassionate use where patients have to fill out s lengthy form that usually gets approved.
• Drug companies who provide drugs under state law and ignore federal law run the risk of making the federal government a bit unhappy,

While streamlining the federal governments approval process may not be a bad idea, circumventing the federal government might not be the smartest idea. I think I would want to lobby my federal, not state, legislators to recognize that patients are smarter these days.

Thoughts on obesity and cancer

Studies show (because we need another study) says that being obese influences caner patients outcomes. Basically, the fatter you are the more likely you are to die from your cancer. The rates were 16.9% vs. 21.5% in a recent study on breast cancer patients.

Well here is my problem: cancer treatments often cause weight gain (unless you are too nauseous to care about food - but then you can still gain weight). First there is the stress eating and depression eating caused by the trauma of a cancer diagnosis and its looming treatment. Then they pump you full of steroids at each infusion to reduce reactions to your chemo drugs which cause you to feel starving and give you that round moon face. Then the hormonal treatments for breast cancer more weight gain.

My fibromyalgia medication, Lyrica, is known to cause weight gain.

Do you see a pattern here?8

If obesity is going to be considered as much of an issue as to tobacco as a health risk, shouldn't more focus be placed on the side effects  of the treatments themselves? Shouldn't care be taken to prevent causing additional health risks while treating another ailment?

Is the benefit I get for taking Femara, hormonal breast cancer treatment, negated by the weight gain it causes?

Sometimes I wonder why I still take it. If I could lose some weight by going off it, would I be better off without it?

But then we realize that it is easy in most situations to put weight on but much harder to take it off. And with each new medication you gain another 10 pounds that just won't go away...

More research please.

selfish (dear loved one)

I'm sorry that my fear becomes yours.

I regret that you get pulled into my panic.

I feel ill when my every cough, ache or bump twists your insides the way it does mine.

I would prefer to protect you.

I want to watch you smile, hear your laugh, feel your heart thump with joy when you pull me to your chest.

I don't want to make you scared, or sad or worried.

But I can't wish you weren't ever scared or sad or worried.

Because I need to share.

Because I need not to feel alone.

Because I need you.

Angelina Jolie, mastectomies and choice

People keep asking me what I think of Angelina Jolie's prophylactic mastectomy and subsequent op-ed in the New York Times. I've let my thoughts simmer a little before putting them into words. It's hard not to react viscerally to such a dramatic story.

I wonder who'll play Angelina in the movie?

First and foremost, I want to say that what any woman does to her own body and to preserve her own health is her own damn business. Unless we are in her exact pair of shoes there are limitations on the right to comment. 

Secondly, I think Ms. Jolie's choice to go public, especially given her status as a Hollywood sex symbol, is very brave. Having a mastectomy is shame-laden for so many of us and discussing the procedure openly does a great service. I love that she chose to emphasize how, most of the time, the mastectomy is not major surgery and recovery can be fairly smooth. A woman without her "natural" breasts can adjust and go on living her life as she did before - even when her husband is Brad Pitt and what she did before was star on the big screen.

I think that Ms. Jolie made the right decision for herself, based on her situation and the resources at her disposal. How do I know it was the right decision? Because she is happy with it.

That being said, I do have a few things I need to get off my (ahem) chest. These are my thoughts, in no particular order:

• The vast majority of women would not benefit from genetic testing. We have no family history of breast cancer and do not belong to ethnic groups most likely to carry the gene.

• Immediate reconstruction is not an option for some women, nor is it the norm in Canada. For some of us, reconstructions is never an option, for physical or economic reasons.

• Reconstruction is major surgery. Some of us would never put ourselves through a much more serious operation, that may not be successful, just to meet a societal definition of "beautiful", or even "normal."

• The kind of nipple preserving surgery Ms. Jolie had is still new and not yet widely offered. In Canada, a group called Be The Choice is trying to change that. Melanie Adrian,the founder of Be The Choice had to see many doctors and fight hard to obtain this procedure for herself in 2011.  

• Many women do not have the resources to get the quality of care that made the process so easy for Ms. Jolie. Even in Canada, where we have theoretically universal health care, there are geographic and socio-economic discrepancies that affect treatment and recovery.

• Access to testing is also very restricted, largely because the BRCA1 and 2 genes (the ones that can mutate and cause breast and ovarian cancer) have been patented by a company that restricts its use and ensures that the cost remains high. The patenting of genes is an odious and frightening practice. I'll elaborate on that and share some resources in a future post.

Every woman needs to make her own decision about prevention, surgery and treatment. What we all should agree on is that these decisions ought never to be restricted by available resources, ignorance or the greed of big corporations.

Want to read more? Here are some of my favourite posts, offering insight from different perspectives:

"Still Boobless", on Insert Boobs Here, a blog by Sarah Merchant who was diagnosed with metastatic breast cancer at 28.

"Angelina Jolie's choice not the only one" by Joan Walsh, on Salon.com.

"Angelina Jolie's Bilateral Prophylactic Mastectomy - If She &  I Could Chat", on Nancy's Point, by Nancy Stordahl who lost her mother to breast cancer in 2008 and went through the illness herself in 2010.

"Preventative Mastectomy: Angelina Jolie's Very Public Choice" on BlogHer by Contributing Editor Laurie White.

Having fun!!!

I am sorry for not blogging for a few days but I am visiting the town of Saint Peter, MN for a friend's wedding this afternoon.

I flew out from Boston on an uneventful flight (and they didn't lose my luggage) on Thursday. Since then we have been eating and drinking, as well as getting our nails done and other girly stuff. This morning is the big hair adventure where I will hang out and chat - my hair is pretty short these days so it does not need much. Then back here for the wedding itself.

But the big news is that yesterday I met another breast cancer blogger who I only knew online. We were cyber friends but now we met in real life, a rare occurrence in the blogosphere when people come from the four corners of the earth. So yesterday I had a drink with Teresa of the blog Spellbound by our own imperfect lives where she writes about her own breath cancer misadventures.

It is absolutely wonderful to meet other bloggers in real life. Every so often I get this opportunity and I try to grab it.

But it's time to get moving to get on with today's misadventures!! Congratulations A and J (you know who you are!) Best wishes for many years of happiness together.

Between the Headlines. You Choose.

While dire statistics about male breast cancer may have sounded like the big story from the American Society of Breast Surgeons’ (#ASBrS2012) annual conference early in May, there were others with more far-ranging consequences that didn’t hit the wire.

The name of the game for any woman facing breast surgery now is still ACOSOG Z11, the sea-changing clinical trial which showed that extensive lymph node surgery is no longer needed for women who have microscopic cancer cells in one or two lymph nodes. 

“There’s still a need to educate surgeons and patients that axillary dissection is unnecessary in many patients who have positive nodes (1-2) and who are undergoing lumpectomy and subsequent whole breast irradiation plus chemotherapy for breast cancer,” says Deanna Attai, MD, FACS, and co-moderator of the weekly #BCSM chat on Twitter.

With ACOSOG Z11 one of the pillars of breast cancer treatment, axillary lymph node dissection (ALND), took a serious hit.  Physicians know now that biology combined with staging predicts long-term survival in breast cancer patients, not just the stage at diagnosis.  This study will save thousands of women from painful, disfiguring surgery and its attendant life-long risk of lymphadema.  ACOSOG, a clinical study group of the American College of Surgeons established by the National Cancer Institute, is also looking at whether or not the same survival benefit applies to women undergoing mastectomy instead of lumpectomy as part of their treatment.  It seems logical to expect that it will.

            But to date no studies have been done to show whether or not women who receive accelerated partial breast irradiation, or APBI, could also bypass extensive lymph dissections.  Yet. 

            APBI, a form of brachytherapy, is one of the newer kids on the block in treatment.  In brachytherapy a device is implanted within the breast next to or within the original tumor site.  This is done on an outpatient basis after pathology reports confirm that surgical margins are clear and the scar from the lumpectomy incision has healed.

             Brachytherapy also has attracted some controversy.  Last December at the San Antonio Breast Cancer Symposium researchers from MD Anderson said that bracytherapy was associated with higher rate of later mastectomy, increased radiation-related toxicities and post-operative complications, compared to traditional whole breast irradiation.

            Then on May 2, the same day the ASBS conference opened, I saw this JAMA article “Association Between Treatment with Brachytherapy vs. Whole –Breast Irradiation and Subsequent Mastectomy….” with headlines like this “More Women Need Breasts Removed” right on its heels.

Coincidence?  Probably. Soothsaying has never been one of my skills.  But note that a trial ASBS presented, “Brachytherapy as Effective for Local Breast Cancer Control as Whole Breast Irradiation” wasn’t released until May 4, two days after the JAMA article appeared.

There’s a lot to say.

In both cases, the retrospective data analyzed by the MD Anderson group or the Mammosite® trial reported by the ASBrS, survival was NOT adversely affected by the use of brachytherapy or APBI in women with early stage breast cancer who had been treated with lumpectomy.  In other words, a woman does not increase her risk of death in choosing between the two.

What the JAMA issue does not analyze (nor could it) is the best candidate for the short-term course of radiation.  The JAMA data was compiled from an analysis of Medicare claim forms (not medical records) of 92,735 women – the average patient age was 74 – treated between 2003 and 2007.  And while the potential risk of mastectomy in patients treated with brachytherapy echoed loudly in headlines what were the actual numbers? 

For older women with early breast cancer, some 3.95, or close to four percent were more likely to have to undergo a mastectomy vs. 2.18 percent undergoing whole breast radiation.  Granted, if you are the woman in the differing 1.77 percent having to undergo a mastectomy after prior lumpectomy and APBI would be difficult yet the inference, that the subsequent mastectomy was related to brachytherapy cannot be inferred from claims data. The information isn’t complete.  

Another question is how many women within that 3.95 percent had cancer recur close to the original tumor? That is the million dollar question and what only trials can determine.

Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society said here, “The question has always been whether the use of these newer techniques has the same benefit of treating those silent areas that we know exist in other parts of the breast.”

The great majority of local recurrences actually occur within one centimeter of the original tumor, Dr. Attai said.  In the ASBS study, seed radiation via MammoSite® (the implanted device that delivers the radiation) is as effective as traditional or whole breast radiation in preventing local recurrence in a subset of patients with early breast cancer.  These patients have now been followed for five years.

           “Right now offering APBI outside of a clinical trial is only recommended for women older than age 45-50, with tumors <3cm, clear margins, and negative lymph nodes,” Dr. Attai said.  “It will remain to be seen if factors such as tumor grade, ER/PR and Her2/neu status, and other factors are important in the patient selection process.”

          Bottom line:  if you are currently considering brachytherapy carefully research both your surgeon and radiation oncologist. You need to ask pointed questions. Accelerated radiation, delivered twice a day for five days as opposed to 30 – 33, is a great deal more convenient for working women. It also delivers less ionizing radiation to the surrounding tissue -- remaining breast tissue as well as ribs, lung and heart -- than whole breast radiation. 

It’s important that you know what device the surgeon uses(whether MammoSite® or SAVI or Contura) and her/his experience with it.  One of the coolest things I ever encountered in my own ‘ask the doctor journey’ was when I was considering reconstructive surgery and asked the plastic surgeon how many (free) flaps he’d lost.  Without missing a beat and not minding the question at all he simply said, “none.”

But you have to ask. You also need between the headlines for the information you need to make critical decisions about radiation.  Shorter-term has its own set of side effects (physician skill is key) and benefits – better cosmetic outcome and skin damage in most cases. As with any newer procedure a surgeon’s training and experience are the best predictors for the best possible outcome.  In essence, APBI with MammoSite® is shown as effective as conventional radiation for women with some early stage breast cancer.

              “MammoSite was the first device approved and has the largest amount of associated data. Newer devices allow us to better sculpt the radiation dose and minimize excessive exposure to the skin, ribs and lungs, and potentially making this treatment available to a larger number of women,” Dr.  Attai said.

               Keep asking your questions.  Talk back to the headlines until you’re comfortable that you’ve gathered all the information you’ve needed for the best possible cancer treatment.  I think that with the right surgeon, APBI is an excellent option.  But you have to know it’s available, to even choose.

#  # #

1) May 7, 2012 Tweetchat:  Findings from the ARBrS2012 Conference

2) American Society of Breast Surgeons: APBI Selection Criteria

Disclosure:  I am a patient liaison for the American Society of Breast Surgeons, a voluntary advocacy role.  I was not asked to nor did I accept any payment for this article.  But I did ask questions because hearing both sides of the story, especially in regard to breast cancer therapies, is always important to me.