Friday, September 10, 2010

Taking My Lumps

Barbara: Deb, I have a confession to make: I have recently been through a medical experience, but I haven’t shared it with you. You were dealing with Frisker’s health and untimely death and I just couldn’t add more weight to your load. Dear readers, I have a confession for you too: I could’ve told Deb any time in the more recent past, but have pulled a kind of blogger’s conceit by waiting for this post to reveal my experience both to her and you. Call me manipulative. Hey, it’s storytelling at its most devious. I’m not proud.

First, I have to set this story up by telling you all that Deb and I have a kind of health dichotomy: if my health-care professional (doctor, naturopath, esthetician, whoever) tells me one thing, hers will tell her the complete and utter OPPOSITE. And vice versa. Never fails. It’s become a running joke between us. It’s gotten so bad that we can’t even get through the “But my doctor said…” without bursting into a fit of giggles.

Second, a proviso: I am not nor do I claim to be any kind of health professional. My wish is to share an experience, my assumption is that you will all do what’s best for you, and my hope is to open the floor to discussion.

Earlier this year, Deb and I were talking mammograms—I told her that I hadn’t had one yet. She balked—her doctors and everyone she knew recommended having regular mammograms when they turned 40 (I was 46 at the time). I said that neither of my two doctors had mentioned me needing one yet and that all the literature that I’d read (or skimmed, in truth) had always said mammograms for women without breast cancer histories should start after 50. Deb didn’t say much more about it that night—she seemed to accept my take on it. But the next day, I received a heartfelt and beautiful email plea from her. Would I please reconsider my stance? She knew so many friends whose breast lumps were discovered in their 40s. Cancer concerns were rampant. She supported any decision I made, of course, but please, oh please, would I think it over again.

Well, I did think it over. Have you ever noticed how when you have a weighty conundrum the universe suddenly inundates you with relevant information? If you haven’t noticed, start paying attention—I swear it’s a real phenomenon. After I got Deb’s email and while I was pondering her powerful words, not one but THREE articles came into my world (by way of my national paper and two respected magazines––here and here) and all of them weighed in on the side of starting mammograms after 50. The crux (bear with me here) is that the medical community is finding there are so many false positives on breast lumps and that, with the attendant procedures, more harm is being done than good. The problem with this logic is that there are also cases where early mammograms find lumps in women in their 40s that could have resulted in death had they not been found earlier.

So the dilemma was still: was I that more common woman who might have lumps that come and go and are of no medical concern but if found would begin a flurry of unnecessary medical activity, or was I that one in a million woman who might have a malignant tumour that needs to be found pronto?

I had my annual physical and discussed it with my doctor. With my family history, she still advised after 50. As usual, she also felt around for lumps and was satisfied with my general good health.

Flash forward three months. My affectionate husband stops in mid-nuzzle and says, “There’s a lump in your breast.” And then the world stopped.

What?! Yes, I could feel it. About the size of a nut. Mobile. Soft. We reassured ourselves that it was most certainly nothing. But, of course, the doctor appointments began. And, of course, the debate about the mammogram was officially over. A mammogram, by the way if you haven’t had one, isn’t really that bad. Firm, emphatic pressure, that’s about it.

And while I waited for results, the nut-sized lump got bigger. And bigger. Before I knew it, it was the size of a plum.

Then the dreaded phone call from the doctor’s office: the mammogram wasn’t conclusive; I would need a breast ultrasound. Okay, in all my personal drama herein, I never thought to ask anyone why breast ultrasounds don’t trump the mammogram. In an ultrasound, there is absolutely no discomfort; it was the second procedure in my case, so presumably it gives a better scan of the breast; and there’s no friggin’ megawattage of radiation! Any answers out there???

Anyway, I waited, waited, waited for the results of the ultrasound, all the while fingering this swelling, confusing, foreign ball inside my body. And, again, get the dreaded phone call that I need to talk to the doctor. This time she tells me the results show that the lump is not a cyst like we’d assumed, but a “benign-looking tumour”. I confess, I burst into tears. Didn’t hear (or care about, for that matter) the “benign-looking” part. All I heard was TUMOUR. Tumour, tumour, tumour. The kind of lump that needs to be surgically removed. The kind of lump that, in my world, has “malignant” written all over it.

For two weeks, while we waited for the appointment with the surgeon, my husband and I tried to be brave and optimistic. For me, this was very very hard. Deb’s beloved dog was dying and my mom was heading to Paris for two weeks. I decided to spare them the worry until I knew more. I had my husband, my sisters, and Charlotte to lean on. It was a quiet time of nervous introspection.

Then the date came for my husband and I to meet the surgeon. I was immediately reassured by his calm, sweet, and informed presence. It would be okay. Then he very carefully outlined all the next steps and possible outcomes, so that we would be prepared for every eventuality. “If we have to remove the lump and the area around it, there would be a significant change to the shape of your breast because they’re relatively small. Then we biopsy again and go from there,” he said. He told me to lay down on the examining table so he could extract some tissue from the lump. The room fell away. That was it––I was going to die.

As I fought to remember to breathe, the kind doctor inserted a needle—which I didn’t feel at all––into the lump. A thin film of sweat enveloped my body. I guess I was watching his face intently because I noticed him give the smallest possible doctorly reaction. “Well, that’s good,” he said. What was good? How could anything be good right now? Doctors don’t biopsy by sight, do they?

“This changes everything,” he said as he held up the needle. It wasn’t the hard tissue of a tumour, but the (sweetest, most wonderful) fluid of a cyst. And just like that the lump—and my stress and worries—was gone.

Mammogram or no? If I’d had one 3 months earlier, we would all have known that there was nothing in my breast at that time––and we would’ve been able to reassure ourselves that no tumour grows that fast. It would have been obvious that my lump was only a cyst. That said, I know my breasts, my husband knows my breasts, my doctor palpated my breasts, and all of us knew there was nothing there 3 months earlier. Same logic. The time while I waited for the results and debated the language (while relatively short) was horribly stressful. Enough to trigger one lump or two (I believe in stress triggering disease in our bodies). Could there have been a better way?

I will say this: I believe in positivity, of being proactive about your health, of learning as much as you can about your personal situation. I also believe that most of us get to sideswipe real health issues (90% of all breast lumps are benign tumours or cysts) while many of us, sadly, do not. So, is the biggest lump of all that our health is just one big crap-shoot?

Deb: First of all, to add to the dramatic tension, I only just found out about this when Barb sent me the blog-post this afternoon. True to her kind nature, she did not want me to deal with this as we were in the middle of our dog Frisker’s illness, which as you know, eventually killed him. I wish I had known so that I could have supported her in this tough time, but I totally understand why she did not tell me. I have read this post three times. Twice to grasp the reality that she was talking about herself and once more to come up with some sort of response.

Barb and I just had a very long chat on the phone about our different views on tests and mammograms and we both came out of it, I think, thinking that there are so many variables and so much conflicting information out there. There is good solid information and many of it contradicts the other side. To Barb’s point, is our health just a crap shoot? Maybe. I often think of people like Linda McCartney who did everything she could and lived so well and pesticide-free and yet still she died young. But all I know is, I am still reeling from this new information about my dear dear friend. So my response is this: thank you, dear God, for my darling Barb and this wonderful outcome. May it be the same for thousands of other women no matter how they find out.

17 comments:

  1. Barb, Let me just say, at the risk of sounding cliche, I know EXACTLY how you felt/feel...even down to the part about the small breasts. I have been getting mammogram's since age 40 at the recommendation of my Dr. and in the beginning they revealed nothing abnormal. Then, when I was about 44, I found the same type of lump you did. I went through a similar gamut of emotions and the power-stripping encounter with the medical system, all of which eventually saw me diagnosed with cystic breasts. Basically that means I find lumps with a degree of frequency, begin the entire adventure afresh and then, and I a not complaining about this part, am sent home with an all-clear...or "watch and recheck because we are pretty sure it's fine" directive. I am actually coming up on a recall from my last mammo wherein they found a new lump which they wanted to to recheck in six months.
    There is no doubt about it...it's beyond terrifying. When you are sitting in one of those gowns...usually freezing...awaiting results or in my case the now-standard "The Doctor wants more films. or "They've ordered an ultra-sound!" it's hard not to go to a worst-case scenario. Of course, since we are mom's that involves motherless children and sooooo much left undone.
    While waiting,I often can see from my little cubicle one of those "Run For the Cure! posters and berate myself, "There will be no way I can do this. I can't even speed-walk down the grocery aisle much less run for something!
    So in conclusion, and I'll be the first to admit it's an unsatisfactory one, to a degree it is all a crap shoot...but you just have to be thankful we are fortunate enough to have access to tests, care, support, treatment if needed and do what we can, within our power, to try not to need those things.
    As for ultra-sounds, they don't trump mammo's. i.e. They wouldn't detect calcification, an indicator of breast cancer, for instance. They do however allow additional non-invasive visualization...Nice try though with the easy way out...
    Glad the news was good...Best wishes and good health to you my friends!

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  2. Oh Barb- I am so happy you're okay. can not IMAGINE the fear and stress of going through that.

    I am really conflicted about the whole mammogram thing. I had one at 40 for a baseline, but haven't done it again since. Sometimes I think the medical community interferes too much in our bodies, making small things into huge catastrophes. sometimes I wonder if all their "treatments" and tests are what makes us sick. I am afraid of having my breasts "radiated" every year, and wonder why the ultrasound is always the second choice, after the mammogram is inconclusive.
    I also think we'll look back one day 100 years from now, and think how barbaric our ways for treating cancers. We used to put leaches on sick people, now we inject them with poison. We've still got a long way to go with all this.
    Based on my own personal experiences with the medical community, I trust my own body and intuition more.
    I could go on and on but the bottom line is....thank GOD you are okay.

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  3. Barbara, this comment would've posted a few minutes earlier, but I had to put my head down on the desk and cry really, REALLY hard before being able to type. Oh, Barbara.

    Oh, Barbara. OH, God, oh, God, oh, God. Barbara. *hugs you tight* *holds you snuggly close and pets your hair* Oh, Barbara. To have gone through that terror. To have tasted the cold, grey ash of your mortality. Oh, Barbara.

    I can't imagine what it must've been like for you to look at your daughters and then think about that lump in your breast.

    Oh, for a time machine to be able to go and tend to you with warm cups of tea, the softest afghans, carefully working over all the shiatsu points in your hands and arms, and arranging well timed bits of distraction because you just have to find small moments of laughter in the middle of the nightmare to survive something so big and scary. Maybe Black Adder DVD's or old Far Side comic compendium books. To just sit there beside you quietly while you cried. Oh, Barbara.

    Oh, Barbara.

    And, also, my entire chest contracts for your husband when I think of how fear must've siezed his heart in its bony hand and dug in its ragged, dirty, sharp fingernails when he first felt that lump. It must've felt as though his whole reality collapsed for a split second. Your poor, dear husband must've wanted to beat up the universe to protect you. Poor, dear man to go through that with you. To watch his Beloved suffer and not be able to fix it. To have to ponder losing you. Poor baby. Poor, dear man.

    Oh, Barbara. *hugs you while bawling* Yes, there is a happy ending, but enduring that process was still an awful, wretched, heinous experience. Oh, Barbara. Dear, sweet Barbara.

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  4. Thanks so so much, garedican, Hollye, Rigel!! Your words of support are all warm inside -- as are Deb's.

    The fear for me is sort of like childbirth -- once behind, easily forgotten. Unlike those millions of women out there who must suffer the worst possible news and all the crap that follows. My heart always goes out to them.

    The most compelling reason for me to write this post was because I discovered (to garedican's point) just how many many more women find those lumps and go through that process and are, in fact, totally okay. And always will be. But there's that unnerving process, endless follow-ups, and that itsy-bitsy seed of doubt...

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  5. glad you are okay. I am a big self examer (probably 2x a week lying in bed and not just because it feels good ;)). I have the opposite issue, i have larger breasts and they always seem to have softish lumps (glands) here and there that come and go. So one night I'll feel something and think "oh god, what's that?" and then two nights later it's gone. Here in the states, they urge mammos after 40 and i caved to that, tho find I opt for one every two years vs every year in the hopes of cutting down on radiation... tough calls.

    and so glad you are okay.

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  6. hah, i wrote examer... instead of examiner. is that like funnily? I am distracted by your boobies and my kids. :)

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  7. Glad you are ok Barb and I am glad that everything worked out ok. I had an aunt that had Breast cancer. She didn't catch her's in time an sadly lost her battle with cancer. Anyways I am very glad to hear that you are ok.

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  8. Gae -- I totally read "examiner". I must be distracted by my boobies too.

    Now from the ridiculous to the sublime -- Lyndsie, I am so sorry to hear about your aunt. Too many sad stories like yours and hers. I lost a dear friend to cancer when she was 39 and it was a grueling battle and a terrible loss.

    Love and peace to those that must face it.

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  9. Barb, As such a private person, I want to commend you not only for sharing, but for opening up so honestly with this blog. This entry was so moving, important and personal. I can't imagine how trying the several weeks your endured were. I am so grateful for you, your family and friends that the news was ultimately good.

    I am grateful to you and Deb for creating and evolving this blog site. I think that such healing, empowerment and opportunity can come from sharing stories that are real and personal. Thank you both and please, keep them coming. Well done ladies. You make a difference in a person's day --or at least in this person's day.

    Thanks and hugs, Deb

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  10. Thanks so much, Deb. I think I can speak for my Deb when I say that we, in turn, are grateful for the human (loving, supportive) connection this blog and all the reader-input has given us. Emotional privacy is not nearly as important to me as it was a mere few months ago. I am a better person for it.

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  11. Barb, it just breaks my heart to think of you guys having to go through this. Having lost my mom to cancer, I can imagine how your kid's minds were racing imagining the horrible possiblities. So glad you're okay! And thanks for your willingness to share!

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  12. My breath was stopped until you got to the part about the positive outcome. Whew.
    About 10 years ago there was a lump in my breast. It was biopsied and I had to wait over a weekend for the result. My parents drove up, as they often did, and spent a couple days with us. (Mom would always clean a room in my house; she revelled in filling a cardboard box full of stuff she thought should be thrown out; I loved it. But always checked the box before it went through the door.) The doctor finally called on Tuesday to say the lump was benign, and when I hung up the phone, Mom and I took each other's hands and danced around the living room together. The relief was so great.
    It's a lasting and loving memory of my mother and the unspoken bonds between us.
    And I'm SO glad it turned out all right for you.

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  13. Ruth, I thought of you, knowing what you've been through. My girls were beyond relieved when they found out the good news, but also admitted they were trying not to think about it too much until the results were in.

    Katrinka, so glad you had the same outcome as I did. My doctor told my husband and I that on hearing good news in his office, he has often had a very relieved -- and naked -- woman unselfconsciously clasp her arms around him.

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  14. Barbara-what a terrifying experience! I'm so glad it ended up being something relatively harmless (though I've had a cyst--ovarian in my case--PAINFUL!) In fact that ovarian cyst is the closest scare I've had to that, and ultrasound was how it was diagnosed. I was terrified for a while.

    As for the mammogram... in the US, where we do every procedure possible, they only changed those mammogram guidelines this year and my insurance company apparently still doesn't know. Five years ago at 39 my doctor urged a 'baseline' (which I reluctantly got). Three years later they threatened that if I didn't get my next one, then insurance wouldn't cover if something went wrong, so I was coerced into #2. Next year I may have to get another, unless someone has educated Blue Cross on best practices (which I really don't expect has happened)... so I expect I'm on the 'once every three year' plan until I'm 50. I can live with it.

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  15. Now that was scary, Barbara. I would have died if I had to wait as long as you had to before results. And so glad it was just a cyst.

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  16. Barb - so many comments already but want you to know that I am thinking of you and so relieved to hear that all is well. You are such an amazingly strong woman to have gone through all this by yourself - yes Phil was there but he is a MALE! I have been going for mammograms since I was 35 - fibrocystic breast (and by the way they use ultra sounds on us little boobers since the Mamm can't pick up much when there is not much!).
    Sending you positive thoughts and love!

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