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Today is one of a couple days a year that I get up on a great big huge soapbox about something very important -- a major women's health issue: ovarian cancer, a still frequently deadly form of cancer. It's one of the forms of cancer where early detection makes a MAJOR difference in survival rates. But many women, even those who do periodic breast self-exams, don't know the symptoms. If you don't know the symptoms, see the nice big block quote below -- not to be overly dramatic, but it could save someone's life some day.

My mother died seven years and a half years ago of ovarian cancer. She's survived breast cancer in the late 1970s, and we'd hoped that she'd beat the cancer this time as well.

Note: This is an encore presentation of this diary ;-) I'd thought about stopping my soapbox lectures on this topic, but decided that (given the current political climate and the Republican war on women and women's health), I re-post it.....

I'm too young to be an orphan..... My mother was 10 years younger than my father, and (given that women tend to live around 7 years longer on average than men) we'd spent years joking about filling her 17 years of widowhood. Oh, the plans we'd made: a Jane Austen tour of England, a cross country trip visiting Laura Ingalls Wilder sites, maybe a trip somewhere to volunteer to build a school or women's health clinic in Asia or Africa. But all those plans -- I'll have to do them without her. So far, the one I've done is the trip to the knitter's paradise of Fair Isle. Seven years after her death, that still really hurts to think about.

My mother had every expectation of living a long life. Her mother (who smoked for 70+ years, was an alcoholic, never ate a great diet, and never exercised) died at 91. All four of her grandparents lived to be at least 90. A couple greats-grandmother lived to the ripe old age of 103.

So, when Mum (non-smoker, light social drinker, careful eater, regular exerciser) retired at 63, we expected to have a couple decades or more to have fun in.

My mother was one of the world's special people. She worked a more than full-time job most of my life, spent much of my childhood earning a PhD, was active in the local UU church, and devoted lots of time and energy to community organizations. But my brother and I were never neglected. We just got dragged along; I remember when I was 5 or so being given the task of sorting National Geographics from the other donated magazines at the AAUW scholarship-funding book sale ;-)

Oh, and my brother and I considered store-bought cookies a real treat, as Mum pretty much didn't allow them in the house; she made her own, as well as the raisin bread Dad preferred to storebought.

Mum, on the left.... enjoying herself. She didn't really like this picture but it's one of my favorites of her, as she was really enjoying herself ;-)

Mum enjoying herself in ME

Another favorite, with my father:

Mum and Dad Butchart Gardens BC

With a well-loved kitty:

Mum and Priscilla reading

Already sick, but still travelling (to visit family in AZ), and never still....

Mum in AZ knitting

Even the minor GI complaints she had (put down to the retirement and December holiday parties) didn't seem too important. But.... 27 days after she retired, she was officially diagnosed with ovarian cancer. Two years of chemo and other treatments later (fortunately, she had excellent health insurance!), she died way too young. She fought it (including walking home from the hospital more than once to get some exercise in.... all 3.3 miles; yeah, she also walked to the hospital when she was more than 9 months pregnant to give birth to both me and my younger brother.....), and had support from some pretty amazing friends as well as her family, but it was at stage 4 when diagnosed - five year survival rates barely hit 15%, even with the wonderful care she got at a top cancer research center.

From the Mayo Clinic, the symptoms of ovarian cancer:
   Recent studies have shown that women with ovarian cancer are more likely than are other women to consistently experience the following symptoms:

      * Abdominal pressure, fullness, swelling or bloating
      * Urinary urgency
      * Pelvic discomfort or pain

   Additional signs and symptoms that women with ovarian cancer may experience include:

      * Persistent indigestion, gas or nausea
      * Unexplained changes in bowel habits, such as constipation
      * Changes in bladder habits, including a frequent need to urinate
      * Loss of appetite or quickly feeling full
      * Increased abdominal girth or clothes fitting tighter around your waist
      * Pain during intercourse (dyspareunia)
      * A persistent lack of energy
      * Low back pain
      * Changes in menstruation

Please -- read and remember the list of ovarian cancer symptoms; also, realize that ovarian cancer is often misdiagnosed as GI problems. Early diagnosis greatly increases the survival rate. If you or a woman you know has these symptoms, get them checked out. The five year survival rate for Stage II ovarian cancer is 66%, compared the 15% or so survival rate when diagnosed at Stage IV.

Mum died seven years and a half  years ago. My family isn't big on memorials (Dad and I discovered a few years ago that no ever got around to putting up a gravestone for his mother, who died in 1975....). But this icky anniversary seems like a good reason to come out of my more usual shy introvert shell to post this, in the hopes that someone who needs it reads it.

Recently, while cleaning out my father's condo, I found some things Mum had written.... In 1978, writing about her first experience of cancer, I was once again impressed by how matter-of-factly she handled that illness (and her later cancer, which had such a much less good outcome). I was also surprised by her uncharacteristically immodest description of herself ;-) But it the final line that prompts me to post these diaries periodically.....

"We’ll do a biopsy and a frozen section and have you right there in case we need to do more" my family doctor said after examining the lump on my breast. The surgeon, when he stopped to see me before the operation, used practically the same words. After visiting hours the night before surgery, a nurse brought me the permission slip to sign, the paper that coldly stated "possible radical mastectomy.’ Of course, I had known what "more" would be, but I was angry that two doctors were unable to say the name of the operation or the cause, cancer, directly.
I talk about my condition, mention it in letters to friends, because I think we should be open about cancer and know what the treatment is like. So far, my experience has been much less dreadful than I feared. But as long as doctors do not say cancer or refer patients to a mastectomy volunteer for practical help, or they talk about Vienna all through an office visit, I realize that the subject is still one surrounded by superstition and fear. Because of this fear, some women do not have lumps examined promptly. The longer they wait, the worse the odds become. Ours is a breast oriented society. Mastectomy is mutilation. But even with one breast, I am clever, charming, witty, intelligent, efficient, and huggable. Alone, I’m not going to overcome such superstition, but with others who share my condition, I am willing to tell about it and, perhaps, reduce a few fears.
Finally, just to end on a less dreary note: a couple of my father's photos as a reward for reading this far ;-)

Chihuly plate

Dance of freedom

Entangled trees


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Comment Preferences

  •  For my memories of a wonderful, amazing woman! (14+ / 0-)

    and for all of us who have come to dislike the second Sunday in May.....

    Mum never made a big deal of Mother's Day (she was too much the reserved New England Yankee to really care about a made-up greeting card holiday...), so I've been a bit surprised how much the day has hurt since she died :-( [Of course, my own history of miscarriages also contributes to that...]

    The worst sin - perhaps the only sin - passion can commit, is to be joyless. (Gaudy Night, Dorothy L. Sayers)

    by mayim on Sun May 13, 2012 at 02:11:09 PM PDT

    •  As bad as it is for women like your mother, (2+ / 0-)
      Recommended by:
      mayim, mjbleo

      it is worse for men like your father.

      "You can biopsy according to whether a man has blue eyes or green eyes and get pretty much the same results as biopsying according to PSA," Stamey tells WebMD. "We can't understand this disease except by first knowing we men all get it, and, second, by knowing that we are very unlikely to die from it."

      Stamey says that to put PSA screening into context, two things must be understood:

          Nearly all men eventually get prostate cancer. It's found in some 8% of men in their 20s and in 80% of men in their late 70s, Stamey says.

          Relatively few men die of prostate cancer.

      Seems strange from a urologist who ran clinical trials at Stanford to say relatively few men die of prostrate cancer when men die of the cancer more than any other outside of lung cancer.

      But you have to first realize 100% of men will get prostate cancer if they live long enough and the worthless PSA screening test meanwhile is a terrible threat to health because of the biopsies.

      It's been years since Dr. Stamey decreed that better tests should be used for screening but the PSA test continues to do harm for no good reason aside from the aid to urologists' and others bank accounts.  The rage against new data backing Dr. Stamey's decree is deafening.

      Many other tests for numerous cancers meanwhile also sit in limbo.

      Maybe more people should care even if it only saved a few billion dollars of healthcare costs aside from lives and health.

      Best,  Terry

      •  tho mayim rec'ed your comment, (3+ / 0-)
        Recommended by:
        mayim, mjbleo, DvCM

        I honestly can't think why you would say this. It is as if you are with your words trying to diminish the importance of what she is trying to say. I'm also not sure you even read her diary. In this context, PSA is not a cancer screening. PSA is a "public service announcement."

        Men's cancer is not in competition with women's cancer. There is no better-than or worse-than here. They are all bad.

        Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that. ~ Martin Luther King, Jr.

        by Melanie in IA on Sun May 13, 2012 at 05:43:36 PM PDT

        [ Parent ]

        •  I tend to rec all the comments in my diaries.... (3+ / 0-)
          Recommended by:
          Melanie in IA, mjbleo, DvCM

          even when someone misunderstands what I'm trying to say, as long as they aren't disruptive ;-)

          Overall, I'm in favor of developing GOOD (a.k.a. efficient/accurate) tests for cancers ~ especially those that are frequent killers.

          The worst sin - perhaps the only sin - passion can commit, is to be joyless. (Gaudy Night, Dorothy L. Sayers)

          by mayim on Sun May 13, 2012 at 06:00:19 PM PDT

          [ Parent ]

        •  PSA is a cancer test (2+ / 0-)
          Recommended by:
          mjbleo, DvCM
          Prostate-Specific Antigen (PSA) Test: Why It's Done, Results, and More
          Like many cancer tests, the PSA can even kill but unlike, say a mammogram, it is worthless for detecting cancer as a screening test.

          My wife's best friend had nearly every mature female relative develop breast cancer.  Marguerite religiously had a mammogram every year because she lived in dread of breast cancer with better reason than most.  

          It was instead her husband who discovered the lump in Marguerite's breast.

          "Too bad we didn't discover it earlier," said the oncologist.  "It has metastasized."

          They probably could have discovered the cancer earlier over the years it was growing if they used computer-aided scanning of mammograms.

          But it's a bit of bother and costly to do trials and get through the regulators.  So ladies like Marguerite just have to hope humans doing piece work will see the cancer and hope the x-rays don't cause another cancer.

          Pap smears are even worse but women should not avoid them when recommended.  After all they do sometimes detect cancer and the risk of harm is slight.

          Unlike the PSA test - which really is a cancer test.

          Best,  Terry

  •  Thanks, mayim. (2+ / 0-)
    Recommended by:
    mayim, mjbleo

    I'll come back and read carefully after my company leaves.

    Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that. ~ Martin Luther King, Jr.

    by Melanie in IA on Sun May 13, 2012 at 04:30:13 PM PDT

  •  So... (2+ / 0-)
    Recommended by:
    mayim, mjbleo

    Yes, I did just now have a chance to read carefully. Unfortunately, all those symptoms are so typical of things that may be brief or intermittent, I can understand why women don't take much note. I also can understand why doctors' first assumption is GI issues rather than cancer.

    Your mother must have been quite remarkable, strong, smart, and witty. :) I'm sure you miss her so much.

    Thanks for the information and thanks for sharing her with us.

    I will link to it tomorrow in C&J, just to make sure it gets more eyes.


    Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that. ~ Martin Luther King, Jr.

    by Melanie in IA on Sun May 13, 2012 at 05:46:32 PM PDT

    •  The cluster of symptoms is part of the problem... (2+ / 0-)
      Recommended by:
      Melanie in IA, mjbleo

      They are vague ~~ and not well known, which compounds the problem :-(

      Breast cancer is nowhere near as stigmatized as it was when my mother had her mastectomy (and that history should have pushed ovarian cancer much higher on the possibility list...) in 1977, thanks to various celebrities and to ordinary women like my mother who talked about their experiences. But I've had people who were obviously uncomfortable when I mentioned ovarian as the type of cancer Mum had. So I'm doing my little bit as her daughter to try to break down the ignorance and sense of shame that ovarian cancer still seems to provoke.

      Thanks for any linkage... I tend to not be too good at publicizing my diaries ~~ I really am the shy introvert in the corner (unless I've with Commonmass.... he brings out my hidden other side {grin}).

      The worst sin - perhaps the only sin - passion can commit, is to be joyless. (Gaudy Night, Dorothy L. Sayers)

      by mayim on Sun May 13, 2012 at 06:08:04 PM PDT

      [ Parent ]

      •  You Probably Already Know There Is a New (2+ / 0-)
        Recommended by:
        Melanie in IA, mjbleo

        molecular test for ovarian cancer.

        And there are even dogs trained to smell cancer.

        There is hope that the most deadly cancer of them all, pancreatic, will soon have available a blood test to detect it in early stages.

        I am very sorry that I might have seemed to slight your precious memories of your mother and the awful disease that took her.

        I assure that it was not meant.

        At my age I have seen so many deaths from cancer that needn't have occurred.

        "Congratulations!" said the doctor to my uncle.  "I didn't think we could do it but we have cured your lung cancer."

        That was mighty fine but my uncle was dying of bone cancer.

        Might or might not have been lung cancer mets.  No one will ever know now.

        We men are always whining about our backs.  My uncle probably whined more than most as his back was turning to jelly.

        Little wonder the doctor paid him no nevermind.

        I am happy to report the doctor listens up good when my wife complained about her old whiplash injury and that tear in her achilles tendon (a devilish hard thing to treat but whiplash has no cure).

        Wimmin just know how to complain.  Maybe it's the higher pitch of the complaining.

        Happy mother's day.

        Best,  Terry

  •  Thank you mayim for a very important message. (3+ / 0-)
    Recommended by:
    Schwede, Melanie in IA, mayim


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