Friday, February 22, 2008

I Love Manchego Cheese

Odd title, you say? Indeed. Actually, it's the mnemonic I've used for the last couple of days to try to remember the 4 things I wanted to blog about: Interview, L., Myths, and Checkup.

Let's take them in reverse order, because the biggest and best thing is my checkup--which I had earlier this week, which included my annual mammogram as well as the blood and physical exams, which was all clear, and which officially established my 2-year anniversary of surviving breast cancer. Yay!!! (Technically, it's not quite 2 years, but I think we can assume I won't relapse suddenly in the next 2 weeks.) I've said this before, but my brand of triple-negative cancer is at greatest risk for relapse in the first 2 years. Risk drops dramatically after that until 5 years, and then it drops precipitously after that. So there's no "home free"--I am knocking wood with my elbows as I type--but this is a Big Deal anniversary.

It's almost like I might start to dare to imagine a life in which breast cancer never comes back. It's an audacious thought, but I just might get there.

OK, second--myths. Recently--on blogs and websites--I came across some very credible-sounding information suggesting that I should get my subsequent gynecological care from an oncological gynecologist. The information suggested that women who have had breast cancer are at significantly increased risk of ovarian and uterine cancers, and that they (we) should be closely monitored. Note that I have not linked to this information. That's because I asked Christy, my oncologist, about this at my checkup, and learned that in fact the higher risk of reproductive cancers is only true for women with some of the genetic (BRCA) breast cancers*--not for me. And, at USC, the oncological gynecologists will not even see healthy women (including BC survivors)--it's not medically warranted.

It continues to amaze me how many myths are out there about breast cancer, and how much misinformation abounds. Of course, there are also legitimate differences of opinion among physicians, but it is so easy for false "wisdom" to take root.

Speaking of this--did anyone say "malpractice"? I've been repeating this horror story to several people recently and I still can't quite believe it.

A friend of a friend was recently diagnosed with breast cancer. She lives in a small town, not near a major university medical center or comparable breast center. After her surgery, she was told that her tumor would not be tested--since most tumors are hormone positive, she would just be treated as if hers were. That means she would have hormone therapy and no chemo. How appalling! First, hormone therapy is pretty nasty, according to my friends who are on it. It may not make you lose your hair, but you lose other things--from sleep to bone density. No one should be on hormone therapy if it's not absolutely necessary. Second, what if this woman is a triple negative, like me? In our case, chemo can be all the more important--a recent study (cited in a post below) showed that it can make all the difference in survival.

This woman is so relieved to be told she won't have to have chemo that she hesitates to push further and ask more questions. Fortunately, with our mutual friend's prompting, she has gone back and asked for more, and the pathology tests are finally being done, and I hope she will have appropriate treatment. When I told Christy, her eyes blazed and she said "Malpractice!" instantly. It's scary to think how many thousands of women out there could be being treated like this. All my blogosphere pals and support group friends tend to be well to do and urban; I worry for our sisters who are less economically blessed and who live in humbler, more rural places. Why should their lives count for any less?

Finally, interview. The one link I add.* This week, my local NPR affiliate, KPCC, ran a half-hour interview with Dr. Susan Love about breast cancer. It's a very interesting interview in which she talks about a test she's trying to develop for susceptibility to breast cancer (you put something like a bandaid on your nipple and produce some fluid, and a pregnancy-test kind of readout tells you if you have abnormal cells--kind of like a pap smear for breasts, to give early warning before cancer actually develops); a study that found that a small amount of chemo injected directly into the ducts can kill cancer cells (no more surgery??); and, frustratingly, "the 5 kinds of breast cancer," which she never actually named. Give it a listen if you have some time.

By the way, I do indeed love Manchego cheese. It's especially good with some kalamata olives and apples. Mmmm.

*I'm so sorry, but I am too lazy to link tonight. Am just trying to cram this post into a few short available minutes between work and sleep--please Google if you want to learn more, and sorry for falling short on my informational duties. I thought it was better to post at all (after my long absence!) than to wait and do it perfectly.

10 comments:

Anonymous said...

Hew Sweetie! We're celebrating your good news here in Tucson too! and, I love Manchego too...if you get a chance, try a thin slice of Manchego under a thin slice of a quince paste [in Mexico and Spain, "Membrillo". a traditional tapa that we enjoy frequently on the patio in the cool evening with the chimenea going and a nice glass of red Spanish wine. Love you.

TripleNegative said...

I love your blog! I'm a triple negative sister of yours in Austin TX. I am at (www.fightingmycancer.blogspot.com)
I am trilled to see that at 2 years you are doing well. There is a small group of us in Ausin who socialize every now and then. Many of us are members of "The Pink Ribbon Cowgirls!" Hang in there and keep writing the good stuff!

Amanda M said...

re: the gyn onc. - I was told that I would be seeing a gyn. onc. as opposed to my reg. gyn. post BC, and indeed the gyn onc. agreed. Given my history of ovarian cysts, my mom's uterine cancer in addition to breast cancer, etc. And given the risks of tamoxifen, it was nice to get an endo. biopsy as a baseline. So in any case, for my specific situation, the "myth" seems to hold true. And had my mom been seeing a gyn onc instead of a regular one post BC, her uterine cancer might not have been MISSED for the first year.

So, I suspect that it is less a myth and more just one of those areas where there are differences in practice in various parts of the country and the world. Just my two cents - maybe it has to do with family history, types of cancer, and risks....

Jenny said...

Hi everyone, thanks for stopping by!!

TripleNegative--I visited your blog and definitely enjoyed it, too. Was so sad to hear about your friend Shawn. And it's sobering to hear myself framed as a "long-term survivor"--I know that, but I keep that thought at such arm's length! Anyway, I hope your radiation is going well--I, too, really enjoyed Freaks & Geeks (have you seen Veronica Mars? Six Feet Under?)--and it's amazing that you already have an inch of hair; congrats. Hope to hear from you again, and I'll be checking your blog!

Amanda--YES, definitely. I meant to say that the "myth" is that we ALL need that care just because we had breast cancer, when the reality is much more individual and idiosyncratic. So definitely there are women who need that, and I hope they are being told. What I read said that all women had to have that care, and it's the one-size-fits-all approach that frustrates me. So thanks for sharing your story and helping make things clearer and more representative around here!

xoxo

Anonymous said...

Wow. Congratulations on your big anniversary. I'm celebrating too and thinking long term about a healthy life for you. By the way, try a chunk of that Manchego placed inside a fig and grilled until warm. Yum!

rebecca said...

I am doing a dance! A little sitting-down dance, but a dance nonetheless! YAY two years!

Tara.Holahan@trusera.com said...

Dear Jennifer,
Greetings. My name is Tara Holahan from Trusera (www.trusera.com), a free invitation-only network that connects individuals to first hand health experiences of others. We’re beginning an exciting new venture with a simple starting point: To provide a safe and comfortable environment where people looking for credible, relevant health information can connect to the knowledge and experience of others who've "been there."

The Breast Cancer community's real need and demonstrated track record for sharing knowledge and support has made it one of Trusera's first areas of focus.

I've been reading your blog and wanted to reach out to you because you seem to share our belief in the power of sharing and creating access to actionable information. We believe you have compelling, informative stories that our members could learn much from, and really care about providing credible information for the community, as well as calling the community’s attention to questionable content on the web. At Trusera, we believe creating the world's largest network and repository of Breast Cancer stories/information will be extremely beneficial to those looking for knowledge, support and guidance in taking the next step.

We are reaching out to a select group of people within the Breast Cancer community—leaders/ advocates—as part of an effort to build valuable, credible content on Trusera and connect existing networks of people in new, powerful ways online. Our goal is to build a strong base of people and experiences with whom others can connect for information, support and insight.
Please let me know if I can send you an email invitation to check out our site. We would love to discuss the different options in which you could play a meaningful role in sparking this new resource for the Breast Cancer community.
Sincerely –
Tara Holahan
tara.holahan@trusera.com
Trusera
2011 Olive Street
Seattle, WA 98122

winecat said...

Yea for your second anniversary (yes I'm just a bit behind in my reading) my second was May 6. I'm also a triple negative. I'm now on the oncologist every 3 month visit schedule for the next few years. It appears that triple negative is more likely to reoccur in the first 5 years then the odds get much better after that. Even though my tumor was very, very small (less than 1/4") I guess I can grit my teeth and visit the building I so hate for a while longer : )

I also heart manchego cheese!

you can visit my blog at winecat.typepad.com

winecat said...

I just reread this post. This time I focused more on the friend of the friend who originally was told there would be no testing on her tumor. I am shocked, stunned, outraged and shocked that a doctor would be so ignorant.

As you said what if she was a triple negative like us? Chemo makes all the difference in our treatment. Yes, can you say malpractice?

Anonymous said...

A good story

GK Chesterton: “The poets have been mysteriously silent on the subject of cheese.”

Voila: www.tastingtoeternity.com. This book is a poetic view of 30 of the best loved French cheeses with an additional two odes to cheese. Recipes, wine pairing, three short stories and an educational section complete the book.

From a hectic life in New York City to the peace and glories of the French countryside lead me to be the co-founder of www.fromages.com. Ten years later with the words of Pierre Androuet hammering on my brain:

“Cheese is the soul of the soil. It is the purest and most romantic link between humans and the earth.”

I took pen and paper; many reams later with the midnight oil burning Tasting to Eternity was born and self published.

I believe cheese and wine lovers should be told about this publication.

Enjoy.