Yesterday, I told my dr. about a deep throbbing discomfort in my right pelvic side, radiating down my leg and into the back side of my hip. This has been going on for about a month. I’m 53 and my body is trying to go thru the change. He ordered a blood test and I’m also scheduled (one week from yesterday) for an ultrasound and a mamogram. I’ve been reading this web site, and I’m scared. Any comforting words?

Interesting news from New York Medical College suggests women who are BRCA-1 positive are more likely to suffer from infertility. Dr. Kutluk Oktay, a professor of obstetrics and gynecology, found that BRCA-1 mutations were associated with a premature loss of egg reserves. “Premature ovarian failure” (egg loss before the age of 40) has long been associated with infertility. If a woman’s ovarian follicles are depleted of eggs of course she will not be able to become pregnant. It’s association with a BRCA-1 mutation is particularly interesting because such an association suggests a BRCA-1 mutation may be a marker for infertility as well as for breast and ovarian cancer.

The impact goes further. For many years it has been suggested fertility treatment put a woman at higher risk for developing ovarian cancer. Ovulation-stimulating drugs such as Clomid were among the culprits by virtue of their revving the ovaries into overproduction and thereby increasing the likelihood of dangerous cell growth. While drugs like Clomid remain potential risk factors for future development of ovarian cancer (at least once source states, “when infertile women who had taken any form of ‘fertility drugs’ were compared to women who had never taken these medications, it was found that they had a 2.7 times increased relative risk of developing ovarian cancer”), Oktay’s findings suggest a woman requiring medical intervention in order to become pregnant might already have been genetically at risk for ovarian cancer. This finding should certainly not absolve drugs like Clomid from their risk potential, but it does shed new light on how women might approach fertility treatment. Perhaps fertility treatment puts women with family histories of ovarian cancer or women who know themselves to be BRCA-1 positive at significantly different risk than those who have no history.

Before it is suggested BRCA-1 positive women reconsider fertility treatment much more research needs to be done. Certainly such a recommendation needs to come from someone other than a writer whose mother died from ovarian cancer. Still eight years ago, without this information, this writer/daughter was very hesitant to undergo fertility treatment. In my case – as I suspect is true for many women, and a topic worthy of a future blog if not an entire book – it turned out my difficulty getting pregnant was the result of male infertility not female. Fertility clinics routinely check the basics of male fertility – a man’s sperm count, the sperm’s viability, etc. – but often do not go further to explore less common factors. In our case, an unlikely but by no means rare, condition was present that made it impossible for his sperm to penetrate my egg membrane. The reason we asked for further testing was because our doctor had handed me a prescription for Clomid. My mother was undergoing treatment for ovarian cancer at the time and even without Dr. Oktay’s results, it just did not feel right for me to turbo charge my own ovaries. And as it turned out, I didn’t even need to.

The findings also go far in exonerating women from blame for their infertility. Such should be the result of all research: to provide data with which we can make well-informed medical decisions for ourselves and our families, and to take bias out of diagnosis.

Not sure what you all think but some of my very well meaning family, friends, and doctors think that just because I have cancer…
1) That I have lost the ability to think for myself.
2) That I don’t understand the seriousness of my own illness.
3) That they (especially doctors) are now the boss of me.
4) That I somehow relinquished all rights to my privacy.
5) That in addition to the many medical professionals I am working with, that I also need medical advice from friends with no medical expertise.
6) That I need to talk to them every day and if they don’t hear from me they leave the “I’m worried that I haven’t heard from you” message. (How about I just didn’t feel like talking today?)

I know that I am blessed that I have people that care for me but some of this behavior is a bit hard to take. I don’t want to hurt anyone’s feelings but I needed to get this off my chest and I hope that some of you might understand.

I have had a terrible pain in my lower left pelvis near my ovary for the last six months. The pain does not feel like cramps, it is sharp at some points and burns. My periods have been inconsistent and I have had awful pain with spotting between. It eventually spread into my hip, down my groin and has made my left foot numb. I am so tired that holding myself up is an effort these days. I also have many watery sacks that start from my ovary into my hip and groin. My ultrasound revealed a small growth but my doctor said it wasnt significant. My blood platelettes are low and I have bleeding under my skin. Could this be ovarian cancer?

My step-mother, a seven year survivor of metastasized lung cancer, lost a lung to the disease, underwent both chemo and radiation and since has done very well in full remission. She’s traveled, worked out, and volunteered at a battered women’s shelter. But recently a 4cm spot was found on her remaining lung. I write about this because the discovery of this potential lesion at one of her regular follow-up doctor’s visits coincides with the announcement recently of one of the major risks of cancer screening, in particular full-body scanning. Apparently many of us have bits of cancer lurking within, slow growing cancers, some big enough to be detected via MRI, CT scans, or ultrasound but which never would become fatal. They are cancers we live with rather than die from. The risk then is finding such an abnormality and being forced, so to speak, to deal with it.

Of course, my step-mother’s history warrants immediate exploration of such a spot. Someone without a history of lung cancer would best be advised to return in three months to see if the spot had changed or hopefully disappeared. But for those like myself with family histories of potentially genetic cancers, this comes as complicated news. The idea that cancer screening can in a sense create more trouble than its worth (i.e., oblige a person to treatments – exposure to radiation, biopsies, surgeries, and sometimes even chemotherapy – which might be more dangerous than a lesion itself, and without positively impacting survival) is at the heart of the recent governmental task force recommendation that asymptomatic women under 50 avoid mammography. My first reaction to that recommendation was outrage. I can’t say I have lost that initial feeling, but further consideration of the risks of screening has tempered it somewhat.

It’s quite possible the spot on my step-mother’s lung is a benign anomaly, a ding-dong finding, no one ever would have discovered or worried over unless they were doing regular CT scans. It’s also quite possible the complex cyst that prompted me to have my left ovary removed at age 44 would never have advanced to anything life threatening, despite my mother having died of ovarian cancer. Here I am four years later; the loss of estrogen that ovary produced has caused my previously low blood pressure to rise, peri-menopause to commence a few years earlier than usual, and my periods to become so irregular that continued ovarian cancer screening now requires I take synthetic hormones to induce a period to flush out my remaining ovary and uterus in order to get an accurate portrait of what is going on inside, lest another benign cyst prompt me to have another surgery.

Ultimately the choice is a personal one, and cancer screening an option it’s best to have access to; a person can always decide against having a screening or full-body scan. What is essential is a wise, compassionate, and accessible doctor to help you sort out all the risks and benefits and then guide you along the path that is best for you.

I was stage 3 and had surgery 14 mos. ago. I’m experiencing increasingly abdominal discomfort as time passes and 3 of my doctors, gynocalogical oncologist, oncologist and primary doctor all tell me that it’s due to scar tissue developing from the surgery.

I’d like to hear from gals who have had this kind of surgery and what your post surgery symptoms are, if any.

Spring is right around the corner and happy St. Patrick’s Day. I am at the Society of Gynecologic Oncology meeting right now in San Francisco and will be discussing some of the featured abstracts in a blog for next week.

A significant question in the treatment of newly diagnosed ovarian cancer is whether or not bevacizumab (avastin) should be added to upfront chemotherapy. Genentech has recently released a preliminary assessment of results, our team has issued a response to this press release, and the data will most likely be presented at the American Society of Clinical Oncology in June 2010. There is also a trial asking the same question but being performed in Europe.

I have included our statement here:

“Genentech published a press release on its website (www.gene.com) on February 24, 2010 that announced preliminary positive results of Gynecologic Oncology Group (GOG) study 218. This trial was conducted in patients with newly diagnosed advanced ovarian cancer, either optimally cytoreduced (≤ 1 cm residual cancer after surgery) or suboptimally cytoreduced ovarian cancer (> 1 cm residual cancer after surgery). This study was comprised of 3 arms asking the questions about effect on outcome of addition of bevacizumab to initial carboplatin and paclitaxel chemotherapy as well as addition of bevacizumab to chemotherapy + bevacizumab maintenance compared to carboplatin and paclitaxel alone.

The arms were as follows:
Arm 1:  IV carboplatin and paclitaxel + placebo and placebo maintenance for up to 15 months of therapy.
Arm 2:  IV carboplatin and paclitaxel + bevacizumab followed by maintenance with placebo for up to 15 months of therapy.
Arm 3:  IV carboplatin and paclitaxel + bevacizumab followed by bevacizumab maintenance for up to 15 months of therapy.

No toxicities were reported nor were progression-free survival (PFS) or overall survival (OS) results. The press release stated 2 results:
1)  Arm 3 (addition of bevacizumab to chemotherapy and using it as maintenance) had better PFS compared to arm 1 (standard of care IV carboplatin and paclitaxel chemotherapy).
2)  Arm 2 (addition of bev to carbo/paclitaxel without bev maintenance) did not have a better PFS compared to Arm 1 (standard of care carbo/paclitaxel without any bev).

The members of the Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC) Gynecologic Oncology Group have discussed these preliminary results and have made the following recommendations at this time regarding these results:

Although it is of interest that bevacizumab used as maintenance therapy following carboplatin and paclitaxel chemotherapy for newly diagnosed advanced stage ovarian cancer patients may have an impact on PFS, important results from GOG 218 are not yet available such as toxicity data, subset analysis (i.e. age, histology, extent of debulking surgery), and PFS and OS data. Thus, this data is too preliminary at this time to change the standard of care for women with newly diagnosed advanced ovarian cancer. Our group continues to recommend platinum and taxane-based chemotherapy without the addition of bevacizumab to either  platinum/taxane-based chemotherapy or added as maintenance post-chemotherapy when patients are not treated as part of a clinical trial.

GOG 218 data will be submitted to the American Society of Clinical Oncology 2010 meeting in June 2010, and our recommendations will be updated at that time.”

Talk to you soon next week.
Best wishes,

Ursula Matulonis

A friend told me the other day over tea that by and far the strangest thing about being diagnosed was the sudden deafening silence she felt came over her and her life, how one minute she went from feeling an active participant in the larger world to instantaneous aloneness and a strange quiet.

“Ultimately,” she said, “I figure we each are alone with our bodies. Illness is the one thing we can’t share with our loved ones, it’s our own personal journey with our physical self.”

With the exception of pregnancy (which begets a new member of society) medical conditions can seem to detach us from the outside world. Even conquering them is private. The prize at the end of chemotherapy is being done with chemotherapy, is being in remission – one hopes and prays – for the rest of life. As much as those rewards impact our friends and family they remain deeply personal, ours alone to hold and cherish. And the cost usually is some uniquely personal loss – the loss of one’s breasts, or ovaries, or ability to bear children. For my friend, illness ripped her apart from the outside world, from her self. Others have told me illness has brought them closer to others and to a fuller understanding of themselves.

Whichever way it casts you, it’s fair to say illness redefines our lives and our humanness. It forces us to acknowledge we are not in control of much (if anything), that, yes, we each are alone in some way, solitary beings breathing in and out as we go about our communal lives: falling in love, bearing children, making friends. We each live this same miracle that is life, enduring the same burden of mortality and human suffering. In this way illness does come with a unique physical component. But that need not carve us away from humanity; it is part and parcel of humanity. And in this humanity no one is spared a body that won’t one day become sick.

So perhaps we are only alone in so much as we define ourselves by our physical bodies. But what if we are not our bodies? What if we are conscious selves who happen to exist in a temporal body. What if we are souls breathing through the news of illness, breathing as we tell this news to our loved ones, breathing through the illness itself, breathing through treatment, breathing through remission, breathing in some figurative spiritual way even through death.

“No matter what the disease, your true self has no sickness; only your body is sick.”

I told my friend Zen Buddhists honor this sudden stark and deafening silence. It can be the path to peace, the road upon which we let go our attachment to longing, to our bodies, to fear and desire and ego, and find our true selves. The silence is our source of strength; it and we transcend illness.

Then again I’m no Buddhist. Nor is my friend. But she liked this idea as well as the tea. And for the afternoon her body was not the star of the show. We talked of other things, let laughter and joy as well as fear roll by. She breathed in and out and was not alone.

Happy 2010.

I’ve made as one of my achievable new year’s resolutions this year to write a monthly blog for Ovations for the Cure of Ovarian Cancer. Last year, although I wrote a few, they were not as frequent as I would have liked. My other resolution was to get the first blog entry of 2010 done in January (almost accomplished— one day late). This blog will be a brief entry, but I want to start out this year by listing the topics that I want to cover. I am goal driven and not always so spontaneous, so I think this strategy will help me write more blog entries. However, if any readers have any other suggestions of topics that they want to hear about, please let me know via the Ovations for the Cure of Ovarian Cancer team and they can pass it along to me.

There’s a lot going on in ovarian cancer research. In 2010, I’m anticipating results of studies of different biologic agents; GOG 218 (read more on www.gog.org) is also slated to be presented this year and asks the question of whether adding bevacizumab (avastin) to upfront chemotherapy for women with newly diagnosed advanced ovarian cancer as well as its use as a maintenance therapy (use post-chemotherapy). The topics I’d like to cover this year are: CA125 monitoring and its controversies, screening for ovarian cancer, updates on PARP inhibitors (one of the more exciting new treatments available for ovarian cancer), origins of ovarian cancer, lifestyle and ovarian cancer risk factors, use of intraperitoneal chemotherapy, other new targeted therapies, The Cancer Genome Atlas project (TCGA), and results from the Society of Gynecologic Oncology meeting (March 2010) and the American Society of Clinical Oncology (ASCO) meeting in Chicago in June 2010.

Plus, if there is some late-breaking news, I’ll address that as well. Some good news for 2010: Ovations will be funding at least one research grant this year. That’s pretty good during an economy that isn’t great at all right now. Send me other topics if you’d like – see you in mid-February 2010.

Ursula Matulonis

Hi there all, I am new to this but here goes.
I had grade 3 breast Cancer, had the test the day before Christmas and went away on holiday thinking I was a dead girl walking and this would be my last holiday. That was 2 years ago now. I read your stories thank you for sharing, it gives hope to all, thought I had it bad but you made me see we are not alone. I had grade 3 breast cancer went through the Chemo badly collapsing twice then the op and rad. The treatments nearly killed me and I am still in pain all the time two years down the line. Nothing anyone says can prepare you for the treatments. Just remember why you are fighting But in all the thick of it I visited a web site called www.healthwise-global.com read their stories and bought a CD which helped me every day that I listened to it. From time to time I still take it out when I feel low and it helps. I done the walk for life and will be doing it again this year. My way of saying thank you for still being here
Thanks you for sharing your story visit the web site see my story there
Jenny

Another new gene has been linked to ovarian cancer, a new study has found.

The new gene is unrelated to BRCA1 and BRCA2, which are known to raise the risk of both ovarian and breast cancer but which are implicated in only a small percentage of ovarian cancer cases.

The new gene, found on chromosone 9, is thought to raise a woman’s risk of ovarian cancer by 20 to 40 percent depending on how many copies of the mutation she carries. For someone who carries two copies of the gene that would mean an increase in risk of 14 in 1000 compared to 10 in 1000.

You can read more about the study here.

Researchers may have found part of the reason that infertility is associated with both breast and ovarian cancers. In a new study, they found that mutations in the BRCA1 gene may cause a diminished supply of eggs.

The study looked at women undergoing ovarian stimulation as part of fertility treatment and it found that those with BRCA1 mutations produced fewer eggs and were less responsive to treatment. Those carrying mutations in the BRCA2 gene were not affected.

You can read more about the study here.

Feeling too calm? Too complacent? Worried your blood pressure might be healthfully low? Give yourself a charge and check out Chicago writer Martha Rosenberg’s one-two punch of an article “Ladies Choose Your Cancer” in the Epoch Times. In it Rosenberg likens women’s experience with risk-laden hormonal therapy choices to the song “There Was An Old Lady Who Swallowed A Fly.” Meaning each hormone-directed treatment offered to women over the last several decades – from Premarin to Prempro to bone-density enhancers like Fosamax and Boniva – has reduced one physical threat and introduced another. To say nothing of DES. Don’t even get me started on that one.

For those who might have forgotten, the old lady swallows a spider to catch the fly, a bird to catch the spider, a cat to catch the bird and so on until the poor woman swallows a horse and then, of course, game over. Says Rosenberg, “For forty years women obligingly swallowed the “fly” of Premarin, a horse urine menopause drug manufactured by Wyeth, now Pfizer, until it was shown to increase endometrial cancer in the 1970s.”

Next came the spider in the form of Prempro another Wyeth compound which added progestin to the estrogen mix thereby reducing endometrial cancer but increasing the risk of breast, ovarian, and lung cancers. Prempro also created difficulty reading mammograms which of course goes far in increasing the risk of breast cancer. To increase mammogram reliability SERMs or Selective Estrogen Receptor Modulators like Tamoxifen and Evista were added. But, oops, these were found to increase the risk of endometrial and ovarian cancer.

What prompted Rosenberg’s piece were findings from a recent reanalysis of the Women’s Health Initiative that suggest bisphosphonate bone density enhancing drugs such as Fosamax and Boniva – originally assumed to reduce a woman’s risk of invasive breast cancer – actually might increase her chances of getting noninvasive breast cancer as well as chronically irregular heartbeat, esophageal cancer, and incapacitating musculoskeletal pain. Oops again.

It’s easy to come to the conclusion the devil at the controls of women’s health are for-profit pharmaceutical companies coming up with concoction after carcinogenic concoction for women to take to combat hormonal discomforts. Are drug companies multi-million dollar mammoths because women actually need their products or because they convince us we need them? I would take a hot flash, night sweat and dry vagina over cancer and incapacitating musculoskeletal pain any day. Perhaps if menstruation and menopause were not treated as a medical disorders and women were provided with support for the discomforts they can cause there would be less vulnerability to the manipulations of drug company marketing departments. Imagine a world in which menstruating and menopausal women had access to acupuncture, herbs, days off from work and a massage?

Instead we swallow a cat to chase the bird then swallow a dog to chase the cat. Think twice before swallowing that horse.

If you’re experiencing hair loss from chemotherapy, you can get a free silk or cotton scarf from designer Laurie Erickson. Personally, I think they’re pretty attractive – you can check them out for yourself here.

To learn more about the Good Wishes program and details on how to get one, click here.

The other day, the first time since her death seven years ago from ovarian cancer, I put on a gold necklace that belonged to my mother. Despite my profile – female, late 40’s – I’m not a big jewelry wearer, and definitely not gold jewelry. My mother’s gold necklaces, diamond earrings, and gem-encrusted rings have been stored away for safekeeping. Once in a while I go retrieve them and have a look and good long think, but I never wore any of them until three days ago. On that particular afternoon my daughter and I were off not to a glamorous event but to meet Tonka, a five-year old black Schnoodle we were considering adopting from a friend who no longer could care for him. Should he be deemed “the one” by my seven-year old, Tonka would be the first dog I owned as an adult.

My mother loved dogs and as a result I grew up with several. When I was two she and my father adopted a German Shepard puppy they named Lady. When Lady was two her self they added a terrier who unfortunately had the doggy equivalent of ADHD and within months was sent to live with a family with more land. Lady lived until age 11 when she passed away from cancer. Not a month later my parents adopted a funny looking mutt named Max who was missing a tooth and loved everyone except my father. Max died when I was a senior in college. One morning my mother came upstairs from her home psychotherapy office to find Max still and silent in the hallway. Just an hour earlier he had been out front chasing a car, likely the one containing my mother’s client. After Max there was Sheba, a black Newfoundland whose white paws had cast her out of the show dog circuit. My parents divorced when Sheba was eight. My father got the BMW and a new life with his girlfriend and her yellow lab. My mother got a small apartment and 135-pound Sheba. After a valiant two-year effort Sheba was sent to live on a friend’s farm in New Jersey. (The dog was sent to a farm in New Jersey? If my mother hadn’t been such a dog lover I might have been suspicious.) After Sheba there were no dogs for a while. My mother was reeling from the divorce, financial upheaval, and then a diagnosis of ovarian cancer. After a two-year remission she started dreaming about dogs again and was just about to adopt one when her CA-125 crept frighteningly upward. An ultrasound found nothing and a repeat blood level was normal so off my mother went to adopt a Cairn Terrier she aptly named Lucky.

My mother’s cancer came back of course; otherwise I would not be wearing her gold necklace. She was able to keep Lucky for three years. Walking him made her feel healthy, I dare say “normal,” like a person who was not at risk of dying. But eventually she no longer could walk him. Lucky’s veterinarian found a loving home for him with a local family.

I have berated myself ever since for not taking Lucky. I was pregnant when my mother realized it was time for Lucky to find another home (a year after the rest of us realized it). Lucky and my cat were none to fond of each other. And, well, I confess: as my mother’s primary caregiver I was up to my ears in caretaking. I just could not add another dependent being to the mix. I’ve thought about Lucky plenty over the years. When it dawns on me he likely is still living, it’s almost like finding out my mother is alive and well somewhere, or like a part of my own life, my past, lives on 20 miles west of the city.

Meanwhile I have been terrified of adopting a dog. Because dogs were so much my mother’s terrain it marks her absence more so than even the holidays did. It stirs up guilt about Lucky, and it calls into question my ability to manage as a dog owner (aka, as a daughter without a mother). Minutes before my daughter and I were to leave I remained ambivalent. And then I remembered my mother’s jewelry. Suddenly I knew how to do this: I would wear one of my mother’s gold necklaces. After all it was she who instilled in me – and her granddaughter by genetic osmosis – a love of dogs. It would be like having her with us. It would make me feel like an adult who could handle dog ownership.

Sure enough we fell in love with Tonka. Already housetrained and with just four teeth he is the perfect starter dog. I watch my daughter reading with Tonka’s head on her lap. I see my reflection in the mirror, the gold necklace lying so naturally around my neck. Both seem as if they always were here or at least were meant to be. Even my mother whose memory I sometimes have to work hard to allow myself to hold, feels just around the corner.