One of the interesting and unexpected effects my mother’s battle with ovarian cancer has had on our family is that being very thin has become for us something terrible and frightening. Being very thin is a body without reserves, a body out of control of the forces of illness that would rather eat it up than retreat, being very thin is our mother in the last year of her illness, it is undeniable evidence of death and dying.

This is not all bad.  As the mother of a daughter growing up in our dim-witted culture that associates skinny with healthy, I welcome any new perspective on eating and dieting that hits home with a big fat bang.  “Your grandmother was so skinny she didn’t have enough fat on her tush to sit down comfortably. Bodies need fat to survive.” I’ve also been known to say, “Better fat than dead.”  As if the two are mutually exclusive, I know.

Skinny is also emblematic for me of the solitary terror that must have made up my mother’s final months. Fiercely independent (aka, scared to death of the vulnerability and dependency ovarian cancer cast upon her) she refused to talk about her illness to anyone other than her closest friends and family.  With the exception of times of hair loss, it was mostly possible for my mother to be in the world without anyone knowing she had ovarian cancer.  And as long as she was able to “pass” as healthy she believed herself to be healthy.   Then she lost weight.

I lived just a few miles away, my sister was able to travel to Boston from her home in California almost whenever she needed, our uncle came in from Detroit on a second’s notice, but mostly my divorced mother faced this most undeniable evidence of disease alone.  Alone in the bath, alone in the shower, alone before a mirror.  Her skinniness was like death itself having taken up residence in her home, in her body. She hid her body under sweaters and scarves, supposedly for our benefit. It wasn’t until she was very ill and in the hospital we saw how emaciated she had become.

So imagine my reaction when my wondrous and blessedly healthy (kenahora) seven-year old daughter put her hand to her tummy and said, “I’m fat.”  Or when my 13 ½ year old step daughter told my daughter, “when you’re 20 I think you will be really happy and skinny.”  Off I went on a lecture about food as fuel and bodies as sacred temples and how healthy bodies are more important than anything in this world and how they come in an infinite variety of shapes and sizes and how we all need a little weight we can afford to lose in the event we become ill and if I ever hear either the word fat or skinny again in this house I will be deeply and profoundly disappointed.

Of course skinny doesn’t always equal death, even when someone is very ill. It can be a body’s weigh station (no pun intended) on the path to recovery.

For those in need of a few pounds, here are some of the tastiest and healthiest ways we helped our mom put them on when she was ill:  halvah, pine nuts, macadamia nuts, peanut butter and honey sandwiches (though she preferred fluff), milk shakes, almost anything from Sarah Leah Chase’s Cold Weather Cooking, and of course good old bread and butter. As with other cancer-related tasks, when we shoved the reason for what we were doing into the back corners of our minds, we had fun coming up with high-calorie foods.

“Why don’t we write our own cookbook,” my mother said one day, “The Fat Ass Cookbook.”  Each time my mother smiled I saw the cancer take an upper cut to the jaw, and pictured it losing weight of its own.

My daughter lately has been wandering around mumbling about platypuses (how disappointing the plural of platypus is not platypussies).  School is out so she has not been learning about the platypus in science or social studies.  There have been no platypuses on Hannah Montana as far as I know or the new Jonas Brothers show.

“Where did you hear about platypusses?” I asked.

“Platypus!” Was her response.

As with other equally disarming moments it turns out my seven-year old just happened to be tuned in to the cosmic collective consciousness of our species.  Because platypuses made history this week.  Geneticists in Australia report DNA mapping of the platypus reveals a link between Platypus sex chromosomes and DNA sequences found in human ovarian cancer.

For those unfamiliar – as I was – with this 160 million year old creature (its common relatives were around 160 million years ago not the precise platypus we have today), the platypus is a semi-aquatic mammal indigenous to eastern Australia and Tahiti.  The platypus is unique for many reasons.  It is one of only five species of monotremes - mammals who lay eggs rather than give birth to their young.  Platypuses are covered in a fur that sadly has been coveted by hunters.  They have the bill of a duck, the tail of a beaver, and the male has on its hind feet venomous spurs which if touched can cause severe pain in humans.

The Platypus’ distinct characteristics have long captured the attention of evolutionary biologists, especially those from Australia for whom the platypus has been a national mascot and a familiar image on a 20-cent coin.

“Specific chromosomal areas and their genes have been found to be identical in platypus and humans,” said Professor Martin Oehler of Royal Adelaide Hospital in Southern Australia.  These genes which are common to the platypus and to humans are “important regulators of normal development of the ovary.”  Because they increase in women with ovarian cancer Oehler and his colleagues think it is very likely they are involved in the development of ovarian cancer.

Professor Oehler’s group is attempting to determine what ovarian cancer looks like in its earliest stages in order to develop a test to detect at its very smallest.  Mapping the platypus genome has helped to narrow down the area of interest in the human genome (i.e., those possibly involved in the etiology of ovarian cancer).

As it turns out, this was not why my daughter was walking around the house saying “platypus!”  Platypus apparently is the name one of her seven-year old compatriots has given their very cute Jonas-brother-look-alike counselor. Where that girl heard the word I may never find out.  Perhaps her mother is busily researching the mysteries of ovarian cancer, to which she hopes a duck-billed, poison-ankle shooting, egg-laying mammal just might hold the key.

June 2009 marks the one-year anniversary of OvaSure. Last year there was big news on the ovarian cancer screening front when researchers at Yale University announced they had developed a new method of screening for ovarian cancer in high risk women.  The blood test, OvaSure, was scheduled to be tested by LabCorp a US clinical laboratory beginning in June 2008.

OvaSure supposedly calculated the probability of whether a woman had ovarian cancer by measuring six proteins in her blood, some of which are produced by a tumor and some by the body in response to a tumor.  By the way, one of these six proteins was CA-125.  As most of you know, CA-125 is measured alone to monitor ovarian cancer progression in women who already have been diagnosed but is of mixed efficacy in detecting early disease.

In October 2008 the FDA halted the testing of OvaSure. LabCorp had claimed the single company FDA exemption (the FDA does not regulate tests developed and marketed by a single company) and put OvaSure on the market without FDA approval regarding adequate clinical validation.  However in September the FDA informed LabCorp they didn’t qualify for the exemption because the test was developed at Yale, not at LabCorp, and used materials that weren’t manufactured by LabCorp.  It took multiple warnings before LabCorp acquiesced and pulled OvaSure from the market.

We here in the world of ovarian cancer care, research, and survival can be as disenchanted a community as we are hopeful and determined.  To have a potentially better screening mechanism taken away before it even hit the streets is disheartening to say the least.  But the world of drug testing and even “testing testing” is a complicated one.  What could be more dangerous than a cancer-screening test that was not adequately pretested before it started issuing positives and negatives?  False positives might lead you to an unnecessary ultrasound.  But false negatives are matters of life and death.

The OvaSure issue is the tip of an iceberg best not addressed by an opinionated and angry daughter who lost her mother to ovarian cancer the same week her own daughter turned four months old.  And after all, the problem wasn’t necessarily with OvaSure itself. The problem had to do with the myriad forces involved in urgently pushing OvaSure to market.  Tests and drugs save lives, they also stand to rake in lots and lots of money.  As such clinical advances are frequently caught in the cross fire between the pharmaceutical industry, the FDA, and investigators themselves.

So what’s happened to OvaSure?  Only clinical validation will confirm whether it is a safe test for women at high risk for ovarian cancer. As with all regulated research that process will take time. And there’s the conundrum. The time it takes to properly determine if a measure or drug is safe is time many at-risk women sometimes don’t have.

It is comforting to know that Ovations is dedicated to Ovarian Cancer Research. Being a survivor of ovarian cancer and having seen people die from this dread disease, I am grateful that Ovations exists. Recently, I launched a blog at http://www.unemployedreporter.com to chronicle the things I learned from my ovarian cancer experience. I also want to educate others about ovarian cancer and to give women a place to go to “talk” or blog about ovarian cancer.

I am a former journalist who had just launched a magazine for The Sacramento Bee called “Real Life Healthcare” when I was diagnosed with ovarian cancer in July 2003. A little ironic.

Now, I’m a five-plus year survivor and it has been nearly six years since diagnosis. I live with some disabilities as a result of treatment, but the important thing is that I live. I can still write. I can be with my children (and now grandchildren) and I can be a voice for those who haven’t made it this far.

Women who were diagnosed with both endometrial and ovarian cancer at roughly the same time are more likely to survive than those diagnosed with just ovarian cancer, a recent study has found.

Less than three percent of women diagnosed with ovarian cancer develop endometrial cancer. But those women are about 25 percent less likely to die from ovarian cancer than women who are just diagnosed with ovarian cancer.

Women who have the two cancers were more likely to be diagnosed younger and at an earlier stage of the disease. But even when they were diagnosed with a late stage cancer, they still had a lower risk of death than those diagnosed with just ovarian cancer.

You can read more about the study here.

Researchers have found a genetic mutation that causes a rare form of ovarian cancer called a granulosa-cell tumor, a new study has found. Less than five percent of women with ovarian cancer have this form of the disease but they are more likely to die because these tumors don’t respond well to traditional chemotherapy.

Now researchers have identified a single genetic mutation in a gene called FOXL2 that is important in the development of granulosa cells. Granulosa cells are a normal component inside the ovary where these tumors originate; most ovarian cancers develop in the epithelial cells that line the ovary.

The discovery is important because it gives researchers a better way to diagnose these rare tumors, which can be difficult to distinguish from other forms of the disease. That might lead to better targeted, and hopefully more successful, treatment strategies with existing drugs. It also offers hope that researchers can figure out what causes this particular form of tumor and develop new and better ways to attack the disease.

You can read more about this discovery here and here.

I was heading inside a local medical building for my first bone density test when I passed a poster advertising a Full Body Scan! For anywhere from 600 to 3000 dollars the medically curious can have their entire body screened for heart disease, certain cancers, and other abnormalities. It seems to me that primary among the many reasons to think twice, thrice, and even again before undergoing such a procedure is the likelihood of it detecting all sorts of vague and benign abnormalities the discovery of which would necessitate further tests both invasive and noninvasive to explore.

My status as a high risk candidate for ovarian cancer and the resultant screening measures that demands has unearthed over the years all sorts of internal oddities I frankly would prefer not to know about: meandering twists in my colon, a hemangioma on my liver, bowel gas that is apparently so beyond the norm it warrants mention each time I have an ultrasound. To say nothing of all the false alarms that, when opened up for scrutiny, the normal variants of my ovaries have caused. (Catch a glimpse of your ovary late in your cycle and you likely will find a follicular cyst ready to hatch. Even though such cysts are part of a normal and healthy menstrual period if you are on the lookout for ovarian cancer just hearing the words “cyst on your ovary” is enough to get you back in the ultrasound room a month later to make sure the cyst has done its business and dissolved back into the mist.)

Several years into the battle a doctor said to my mother the then baffling, “The cancer has spread to your liver but it may or may not have been there for some time.” How could a physician not know whether there had been cancer in my mother’s liver? Isn’t a liver clearly cancerous or not? After years as both a high-risk woman as well as a medical researcher I have learned that a healthy body is an ever-changing organism reflecting myriad variations of normal, and most little pocks and polyps, growths and gullies, are no cause for alarm. Likely my mother had one or more hemangiomas on her liver. But her liver was only visited later, after her ovarian cancer diagnosis when it was impossible to know for sure.

When a woman is in search of aggressive screening measures to detect initial disease at an early – hopefully treatable - stage is it possible to find out too much? And when a woman is in search of aggressive screening measures to reveal recurrent disease does early detection add to her quality of life? For cancer patients the recent post “Monitoring for Relapse…” brings up this most critical – and answerless - dilemma of cancer screening: detection and treatment at what cost? What if early detection garners longer treatment rather than a longer life? What about a life lengthened only to undergo rounds and rounds of chemotherapy? For the at-risk but as yet still healthy crowd, screening poses a different set of concerns: how far would you go to identify and/or eliminate a likely benign anomaly? Will knowing of your body’s flaws and foibles cause you greater or lesser anxiety?

And what about the risk of radiation exposure a full-body screen presents? Apparently, “a major benefit is the negligible amount of radiation involved…sometimes compared to a dental x-ray or a pleasant stroll on a sunny afternoon.”

Yes, Mary Poppins, a pleasant stroll on a sunny afternoon.

Ain’t it a glorious day?

Right as a mornin’ in May

I feel like I could fly

‘Ave you ever seen

The grass so green?

My spleen looking so pretty?

My liver as plump as a big apple pie?

If one has had a total hysterectomy, i.e. uterus and cervix gone but ovaries still there, can one still have ovarian cancer?  I ask this question because the research suggests that some ovarian cancers begin in the fallopian tubes…

Thank you.

S. Gail

I recently saw a presentation by 2 cancer researchers who suggest very promising studies with control group using 2000 IU Vit. D3 per day. They say (as does my nutritionist) that 20 minutes of sunlight per day is the best source, after that, you can try cod liver oil. (About the need for supplements - where I live in the NE, it is almost impossible to get enough natural sun from Sept. through April because of too much clothing). The researchers also acknowledged the known benefits of green tea (2-4 cups a day or more) and licopene (found in tomatoes). Preliminary studies also point toward the promise of some marine plant derivatives. I personally am stage IIIC - had optimal debulking followed by 6 courses of IP taxol & cisplatin. Starting CA-125 was 1579, at end of chemo CA-125 was 33. Since stopping chemo at the end of January 2009, CA-125 has dropped to 18 and I am still regaining strength. I am quite religious ( I’m an Episcopalian deacon in training) but I also believe in nutrition, emotional cleansing, and carefully monitoring my stress levels and outlook on life.

The American Society of Clinical Oncology met recently and there were a number of studies presented that dealt with ovarian cancer.

You can find a list of all the studies concerning ovarian cancer here. But truthfully a lot of this research is in early stages and won’t be making its way into your doctor’s office for some time.

Here’s a sampling of headlines concerning possible new treatments and other issues dealt with at the conference:

• For those on combination therapy including carboplatin after a recurrence, a drug called PLD seemed to delay progression of symptoms and cause fewer side effects than paclitaxel, according to this report.
• That’s a potentially important alternative because paclitaxel can lead to severe - and sometimes fatal - allergic reactions. Read about it here.
• You can read about a study here that indicates a drug that cuts off the blood supply to ovarian cancer tumors might be a viable alternative for women with cancers that are resistant to platinum-based chemotherapy.

After successful treatment for ovarian cancer, most women go through the anxiety of regular CA-125 testing in hopes of catching a recurrence early enough to treat it and buy more time.

Unfortunately, they may not be helping themselves at all, according to one recent study presented at the recent American Society of Clinical Oncology meeting.

The study found that the CA-125 test did pick up recurring cancers about 5 months before symptoms started to appear. But catching the relapse early didn’t help.  The women who started chemotherapy early based on a CA-125 test didn’t live any longer than women who started chemo later when symptoms appeared. They just suffered through more chemotherapy - with all the quality of life problems that can cause.

It’s important to note that this study was done only on women who were in remission after initial treatment with chemotherapy and then relapsed. Early detection of ovarian cancer for the first time is still thought to save lives.

The study authors concluded there was “no value” in following ovarian cancer survivors with CA-125 testing.

You can read more about this study here and here.

I think this study presents women with a difficult choice, one that it’s probably smart to talk to your doctor about. If the ongoing testing is creating a lot of anxiety and hurting your quality of life, or if your first round of chemotherapy was so miserable you can’t imagine putting yourself through all that again unless absolutely necessary - then you might want to consider skipping the monitoring. On the other hand, for some women doing nothing may be even more anxiety producing and so CA-125 testing may still be appealing. The important thing is to make an informed choice based on what’s best for you.

What will you do? 

Hi everyone!

It’s not often that we use the blog for ourselves, but we’ll be using this a little more as a vehicle to keep you in the loop about what’s going on around here. First of all, dust off your walking shoes and let’s get ready for the first fundraiser of the season: W.A.R. Against Ovarian Cancer! This is a walk-and-run open to the public in Wellesley, MA. Register now to participate this Sunday,  June 14. Adults are $20 (in advance, $25 on day-of event), children (12 and under) are $10. Well-socialized and leashed pets are welcome! Not in the area? Go ahead and sponsor a walker! Bring the family, it’s supposed to be a beautiful day!

Next on our list, Ovations is an active part of the Facebook movement. Now, there’s quite a few groups out there, however, become a fan of Ovations today! We also have a group and a profile, so no worries about imposters. You do have to be a registered user of Facebook to join, but you knew that, right?

Always wondered what we’re doing all the time? Now you can find out. Ovations has a twitter! What is a twitter? It’s like an instant blog. Anyone can sign up, and you can even post “tweets” from your phone! Most often, people “tweet” about what they are doing right that minute. You can follow other people, respond to what they are doing, and even send direct messages–which are only viewed by the receiver. The best part? Celebrities, companies, and organizations (like us) tweet, too! You can even “meet” people through Twitter and them meet them in real life! Even Virtual Sue has a twitter, she’s been trekking across North America tweeting the whole time. What are you waiting for? Go, get yourself a twitter, a facebook page, and get connected with Ovations! It’s a great way to join together to spread awareness for ovarian cancer.

Now you know what we’ve been up to lately, so go round up your friends and we’ll see you in Wellesley on Sunday!

So it’s come and gone, the anniversary of my mother’s death and with it a flood, no more like a tidal wave of emotion.  I don’t dread this day. In fact, I almost look forward to it.   On some deep spiritual level it’s as if my mother is present in and around this date. The pragmatists among you might say, dear it just seems your mother is here because you’re thinking about her more than usual.  Well, maybe.  Perhaps this is my annual appointment with grief.  Because while I feel myself thinking all the time about my mother, it’s not necessarily to dwell upon the final weeks of her life, to think “seven years ago at this time I was pumping my breasts in the small bathroom of her hospital room.”  It’s not like I can know precisely what she was doing at this time one, two or seven years ago today.  And knowing that is like knowing where she is, which is like feeling she is here.  Or maybe spirits do come to walk among us. The fact is, we just don’t know.

Given the time of year it was no coincidence last week I took my seven-year old daughter to Shabbat services for the very first time.  We’ve been considering joining a congregation so that our daughter might begin Hebrew lessons.  But that I picked this week and didn’t even make the connection – in search of Judaism/anniversary of mom’s death – until the Rabbi asked were any among us in mourning, is a little, well in denial of me.  As soon as she asked of course I started to cry.  It’s a wonderful tradition, this weekly calling out of those whose weeks are anything but ordinary.  Two people on a bus, one for whom it is the anniversary of her mother’s death, the other who is on her way to buy grapes, are not of the same planet.

And so I can only imagine what it must be like for those of you who are ill.

Far into my mother’s battle with ovarian cancer she looked healthy – when clothing covered her thinning body - but was very weakened by rounds of chemotherapy, several surgical procedures, and weight loss.  Not one to succumb to physical limitations, my mother insisted upon running her own errands.  Though frequently the walk from the car to a store used up all the strength she had for shopping. My mother’s oncologist offered to write her a prescription for a handicap tag for the car.  My mother resisted for months, thinking the tag an admission of defeat.  “No way!” And off she went huffing and puffing, relieved when she made it to a shopping cart on which she might lean.  We worked hard to convince her a tag would mean just the opposite – it was a sign she was still very much alive thank you and fighting the good fight to win this battle.  Finally she acquiesced.

The first time my mother used the handicap tag a woman shouted at her from a nearby car something to the effect of why don’t you save that space for someone who really needs it!

Not one of us knows what the other bears.  So taking time out to acknowledge that some of us are in mourning, some of us are ill, some of us are celebrating the birth, the marriage, the graduation of a loved one, is a good reminder we each are so much unknown.  We are like mini-universes afloat with our own pains and joys, dreams and wishes. Until we tell our stories.  Of course this doesn’t have to be done at a synagogue, it can – and is – being done here.  So special thanks this week to all of you who have been sharing your stories.

Ovarian cancer was AOL headline news this week thanks to Chana Garcia who bravely shared the story of her unexpected battle with the disease.  A 32-year old African American woman, Chana is not representative of ovarian cancer’s usual demographic.  Ironically, it is precisely this fact that garners public attention.  And while it’s always better that attention come from some place other than the spread of disease, we’ll take it.  Because attention = public awareness = efforts toward prevention, detection and cure.

Now back to our regularly scheduled post: Vitamin D.

My recent diagnosis with a Vitamin D deficiency has got me thinking about vitamin D in general and especially its potential role in the etiology of ovarian cancer.  The idea that ovarian cancer may be linked to a Vitamin D deficiency stems in part from epidemiological findings that ovarian cancer is about five times more likely to be diagnosed in areas of the world of high latitude (like Iceland, Norway and North America) than in equatorial areas (for example Asia, South America, and Africa).  A map of ovarian cancer mortality rates in the United States between 1970 and 1994 reveals an almost doubling of mortality rates across the northern region of the country.

Among other factors, these are areas in which women experience more limited sun exposure.  Exposure to sunlight’s ultraviolet B rays (which most of us block with sunscreen) triggers the photosynthesis of Vitamin D3 in the body.  Our skin manufactures most of the Vitamin D used by our body.  Among myriad other functions, researchers suggest Vitamin D is responsible for inter-cell communication.  In order to achieve healthy turnover cells must “communicate” with each other and this communication is dependent upon adequate levels of Vitamin D and calcium.  Without healthy communication, aggressive cancer cells can take over.

Vitamin D deficiencies have been linked to cancers other than cancer of the ovaries.  But ovarian cancer is of special interest as recent findings suggest higher levels of Vitamin D can influence the course of the disease. Researchers at Dana-Farber Institute found among a group of 300 ovarian cancer patients those with higher Vitamin D levels survived “markedly” longer after diagnosis.  “The chances of dying from ANY cause was cut in half if Vitamin D levels were in the upper 25% of normal.”

Of course Vitamin D, like any body compound, does not exist within a vacuum.  What, aside from sun exposure and diet, might cause a woman’s Vitamin D level to diminish?  Is a Vitamin D deficiency reflective of some other physiological process, or some other aspect of demography? And sometimes results can create the very trends they claim to represent; my Vitamin D levels never had been tested before so who knows what they’re supposed to be. Perhaps Vitamin D levels are meant to diminish; humanity could have been strolling around with low Vitamin D levels since the beginning of time but no one ever thought to check. Therefore, how do we know what constitutes an adequate Vitamin D level is?

Now the irony isn’t lost on me that here I sit inside a five-story office building writing about vitamin D loss while the sun shines generously outside.  High latitude regions also tend to be industrialized regions, places where people spend 40 hours or more a week far from Ultraviolet B rays, and then stop by the store on their way home to pick up some Sunscreen #50.  They are areas in which women tend to bear children later in life (women in equatorial areas are more likely to become pregnant in their teens, and having children early is known to decrease one’s chance of developing ovarian cancer).  And as we know from story’s like Chana’s there is an exception to every rule and generalization.  Still it’s nice to have something constructive to do.

It’s probably best to increase one’s Vitamin D levels through lifestyle and diet (fish, especially salmon, tuna and mackerel, are great sources). But I’ve also got a little bottle of D3 in my pantry.  I’d rather take a vitamin once a day than search for the sun in winter (i.e., this 48-year old will not be learning to ski).

Hello everybody. I’ve been having some really big concerns about my overies. I have not had my period for a year, yet I have not had any pain in my stomache or ovaries. I have taken several pregnancy tests (different ones) and all are completely negative. I haven’t had any pack pain, but I have gained weight; from 192lbs( in may of 2008) to 204lbs (recently). My grandmother on my mothers side has died from ovarian cancer. I do not know the details, but as my mother has told me before we do have a family history of the women in our family haveing ovarian cancer. I have been a little stressed, and I have talked to a councelor about this. He is recommending I get myself checked out. I am in a situation where I cannot get to the walk-in or hospital, and I would really like some advice and support. If anyone could help me, I’d be eternally grateful!!
Thank you!