I'm A Mutant

Happy Boobiversary!

Things seem to be gradually improving, to wit:  Dr. Lucky switched me to a new HRT regime - a combination of an estrogen patch and a progesterone pill.  A few days after the switch, I started bleeding heavily, so heavily that I said to my Boy Toy, "if I suddenly turn the color of Elmer's Glue and get really sleepy, please rush me to the nearest emergency room." 

This of course would have been very difficult to do since we were skiing in Vermont and hemorrhaging to death on the slopes would have been seriously inconvenient.  Fortunately, the heavy bleeding stopped within a few hours and a few days after that the bleeding stopped completely.  Yay!  For the first time in three months, I've been completely spotless for one week and counting.  Fingers are crossed.

The fly in the ointment is that I've been having increased hot flashes and some night sweating.  Hot flashes can be very distracting.  There I am sitting in a client meeting discussing the ramifications of the estate planning segments of the Obama tax compromise or some other such scintillating topic, when I suddenly begin feeling as if flames are shooting out of my ears. 

Involuntarily, I find my fingers slowly creeping towards the ice bucket on the table. 

Then I hear the calming voice of Yoda in my head saying things like "Ears on fire are not.  Dump ice bucket over head, you will not."  Thereafter I can usually carry on with my blather more or less uninterrupted but I'd rather not have to engage in sidebars with Yoda in the middle of client meetings.  I'm going to see if the hot flashes resolve within the next few weeks.  Otherwise, I may ask Dr. L for a bigger patch.

Today is also the one year anniversary of my prophylactic mastectomy.  I can't believe it's already been a whole year.  I have to say, when all is said and done, it was much less of a big deal than I thought it would be.  I like my new breasts just fine.  I actually really like them a lot - they still have softness and contour, but they are droop a lot less than the originals.  I already have come to feel like these have always been my breasts, that they were never different - it's pretty amazing how the mind adapts to physical changes.  I do have a small area of fat necrosis that has to be dealt with. But apart from that, I truly have zero complaints about my reconstruction.  

Accepted!

First there was some good news:

First of all, I don't have uterine cancer.  Not that there was really much of a chance of that since (a) uterine cancer is not associated with BRCA mutations and (b) uterine cancer is very uncommon in women under the age of 50.  Nevertheless, a biopsy, even just to rule something out, it always a cause of anxiety and I thank my friends for your comments on my last post.  Your concern means a lot to me.  I will have to solve my hormonal issues in due course but for now I want to write about something else.

And then, the best news of all:

My beautiful, extremely gifted and talented seventeen year old daughter was accepted early decision to Oberlin College, where she will be matriculating in August.  I am so ridiculously proud of her accomplishments; for muscling her way to a B in Chemistry, even when things were looking desperate, for taking that fifth year of French, even though she hated it, and for being such a thoughtful and intelligent all around great student and a phenomenally creative artist possessed of an aesthetic maturity beyond her years.

As we approach next August, there were be appropriate rending of the garments, intermittent keening and wailing and repeated beatings of the (reconstructed) breast, as the reality of life without my beloved first born under my roof begins to set in. 

But for now we are just overjoyed.

MY BABY'S GOING TO COLLEGE!!!     

 

A Funked Up Situation

I haven't been able to blog much lately for the simple reason that I've been too dispirited, disappointed, frustrated, fed up - pick your adjective. 

Isn't this blog supposed to be uplifting, inspirational, empowering - the tale of my victory over my genetic destiny?

But nothing is so simple.  I wish I could say yeah, oophorectomy is great, not a big deal living with no ovaries.  But that simply is not true.  Despite the fact that I am on a large enough dose of HRT to satisfy a menopausal elephant, in the past few months, my libido has plummeted to zero - picking lint off my towels strikes me as a more enjoyable pastime than having a go at my Boy Toy.

And then things got worse.

A few weeks ago, I started bleeding.  Just a few spots at first which gradually increased to something resembling a "period".  I thought it would stop and after six weeks it had diminished to a trickle.  But the leaky faucet wouldn't stop dripping completely so I finally called Dr. Lucky.  She said that it's most likely attributable to the hormones I'm on but it could also be "something funky going on with the uterus". (Her singular choice of words.)

So I went in to see her.  She did an ultrasound that showed that my uterine lining was 9 mm.  Not a good score.  It should have been thinner.  She also saw a shadow that she was convinced was a polyp.

"You need a sonohysterogram", she said.  Also known as gynecological water torture wherein a tube of saline is injected into the uterine cavity whilst a sonogram is taken.  Said test revealed a squeaky clean uterine cavity - no polyps, fibroids or anything "funky" in evidence.

"I'm going to need a sample," she said.  Lately I've been giving away more samples than a Whole Foods. Obtaining said sample involved an endometrial biopsy that felt exactly like someone was sucking my insides out, precisely because someone was sucking my insides out. 

The whole ordeal was quite horrible and I'm still waiting for the results from the biopsy.  The bottom line is that Dr. Lucky thinks that it's "nothing", just a reaction to the HRT I'm taking.

Or it could be cancer. 

If I had a nickel for every time a doctor told me I might have cancer. . .    

But assuming it isn't, I still have to do something about it.  I can't go on bleeding like this forever. . .

Prime Time Mutants

This season, the HBO series, In Treatment, features a character, Frances, who has recently been tested for a BRCA mutation.  The basic premise of the show is to show actual, albeit fictionalized, psychotherapy, in "real time". Each episode of the series features a different patient who is in therapy with Paul, a psychotherapist played by Gabriel Byrne.  Frances is an famous actress who is having trouble remembering her lines in a new play.  She also has a sister who is dying of breast cancer, which also killed Frances's mother. 

So far, the show has not focused that much on the BRCA angle, other than to explore Frances's guilt over her mother's death and her sister's illness.  However, this week's episode ended with Frances announcing to Paul that she "has her results" (of her BRCA test).  The preview of next week's episode shows her handing the envelope to Paul and asking him to open it and tell her what it says.

Will she be positive leading to a rich fodder of material on the inevitably agonizing decisions that must follow?

Or will she be negative leading to a vast gold mine of survivor's guilt for having escaped the family curse that brutally killed her mother and is currently killing her sister?

Either way, the dramatic possibilities are tantalizing.

I'm guessing negative - pure mental anguish is probably more appealing for a show like this than an exploration of the far more complex psychological aspects of managing a BRCA mutation. 

On the other hand, a positive result, leading Frances to cancer-free previvorship, would also induce a healthy dose of survivor's guilt.

Your thoughts?

The Exorcist

I can't believe that it's been over a month since my last post.  I've just been so busy working, dealing with family issues and trying to maintain my sanity in the face of the usual chaos that I haven't had time to vent about all things BRCA.  But if you think that being a mutant and everything that goes with it, has just completely faded into the background well, sadly, no such luck. 

The saga continues:  About a month ago, I noticed a hard ridge, a lump but not quite a lump, at around 3 o'clock on my right reconstructed breast.  Now I knew, of course, that the chances of this being anything other than fat necrosis were slim to none but nevertheless, no mutant wants to live with a hard lumpy ridge in her breast of unknown character, even after a double mastectomy. 

So I called my doctor at the Cancer Bodega for an appointment.  Dr. LGR is a gynecologist/oncologist, not a breast surgeon.  So she's in charge of the mutant lower half, not the mutant upper half.  Faced with a ridge-not-quite-a-lump in a post-mastectomy BRCA mutant, she had to admit that she did not know what to do.  She does not have a lot of patients who had the type of reconstruction I had (which produces lots of fat necrosis), so she referred me to her colleague at the Cancer Bodega, a noted breast surgeon of some repute.

So off I went to see the celebrated doctor.  Let's call her Dr. Bulky and Bossy.  Nuff said.  Regular readers of this blog (both of you) will know that I'm a suspicious and difficult patient who doesn't especially like doctors, particularly paternalistic types who order me around, so every encounter with a new doctor is a challenge for me.  Dr. B & B examined me and immediatly located the ridge/lump.  She then nodded to her physician's assistant, said something about an "FNA", the physician's assistant said something about the "22 gauge"  and before I knew what was transpiring Dr. B & B had plunged a long needle into the ridge and was violently poking around in there for a while.  She then sent what she had extracted to the lab and within 24 hours, it was confirmed - fat necrosis.  Once again, the mutant escapes from the cancer center more or less unscathed. 

If only this long, tedious, and boring story could end there . . .

After the fine needle aspiration (the "FNA"), Dr. B & B sat down with me in her office to have a "conversation".  I use that term loosely since B & B did most of the talking lecturing. It was one of those encounters that you review in your mind later wherein you hear in your brain all the things you should have said,  but didn't.

To wit:

Dr. B & B: "You have a BRCA mutation which puts you at the highest risk for breast cancer.  A BRCA mutation gives you a lifetime risk of b cancer of anywhere between 50 - 85% . . ." (Droning on imperiously about risks, prophylactic surgery, blah, blah, blah)

What I should have said: "Are you fucking kidding me??? I've had a prophylactic bilateral mastectomy and a prophylactic bilateral salping-oophorectomy. Do you really think I don't know all of this???? I've been dealing with this shit for eighteen months.  I probably know more about BRCA at this point than you do so cut the patronizing doctor crap and just get to the point."

What I did say: "Yes, mmmmmmmmm."

Dr. B & B:  "You had nipple-sparing so all I can tell you about that is that the risks associated with nipple sparing are unknown, we just don't know."

What I should have said:  "Well, yes, technically that's true, but the theory of evolution hasn't been conclusively proven either.  Nevertheless, there are preliminary studies which are tentatively supportive of nipple-sparing mastectomy for prophylactic mastectomy patients including a very recent study published by Memorial Sloan Kettering Cancer Center, a very conservative institution that is now routinely offering nipple-sparing to nearly all of its prophylactic patients.  These studies have shown that although some risk of breast cancer remains after the mastectomy, the risk of cancer actually originating the nipple area is negligible. So I don't think it's right for you to try to scare the bejezzus out of me because I had nipple sparing and it's a moot point anyway since I already did the thing and you're not going to be cutting off my nips anytime soon so what exactly is your point?"

What I did say: "Yes, I understand, mmmmmmmmmmmm."

Dr. B & B:  "Even if the hard area turns out to be fat necrosis, which I fully expect it to be, it should be excised.  A negative fine needle aspiration is only 92% - 96% accurate meaning that some of the time, the fine needle aspiration misses a cancer.  Let's not forget why we down this road of prophylactic mastectomy which was to avoid cancer so we have to be extra vigilant with you."

What I should have said:  "First of all, we did not go down this road.  We only met five minutes ago. I went down this road. You weren't anywhere on that particular road.  And please don't tell me the reasons I went down this road which should not, in any case, be oversimplified.  It took months and months to make the decision to undergo the mastectomy and no, I was not willing to do anything under the sun to avoid breast cancer.  Rather, I made a careful cost/benefit analysis and I decided that if I could get a good reconstruction, such that I would look the way I wanted and expected to look both in and out of the clothes I love to wear, and furthermore, if I could be relieved of the burden of medical surviellance such as regularly having to listen to people like you tell me that every little twitch in my boobs might be cancer so it has to be constantly poked, prodded, biopsied, videotaped and made to spit wooden nickels, then the risk reduction obtained by the surgery would be worth the pain and suffering, the logistical headaches, and the loss of sensation. Simply: (1) Getting out from under the constant medicalization of my life, and (2) obtaining an excellent cosmetic outcome, were very important to me.  And no, I don't apologize for my vanity - just because I'm a mutant doesn't mean I have to be deformed. So if you think that I'm going to allow any kind of exorcism on my beautiful right reconstructed breast that may end up resulting in a giant unsightly hole, to get rid of a harmless wad of dead fat, then you're crazier than the love child of Christine O'Donnell and Glenn Beck. 

As to the statistics that you quoted regarding the accuracy of fine needle aspiration, by your own admission, these apply to non-mutant ordinary women - you know, the kind who actually have breasts.  They do not apply to women who have had double mastectomy with full breast tissue pathology (negative for malignancy, by the way) less than a year ago and autologous tissue reconstruction for whom fat necrosis is as common as pimples on teenager.  What is the accuracy of a fine needle aspiration in ruling out cancer under those circumstances???"

What I did say: "Yes, I understand, mmmmmmmmm."

Dr. B & B:  "And we have plenty of good plastic surgeons here who can do the excision and advise you about what can be done if there any loss in volume in the reconstructed breast so you don't have to hop on a plane to New Orleans."

What I should have said: "I made three trips down to New Orleans, took three months off from work, spend a month in drains, not to mention the drainage of my bank account, and all of that to get the breast reconstruction I wanted from the doctors I wanted to hire. And I'm not sorry I did all that because I DID get the reconstruction I wanted which would not have been possible locally even in this great big city of our that is chock full of great doctors because the hip flaps I had done are only being done by about five practices nationwide and there was no other adequate source of fat on my body. So let me relieve you of any ambiguity here: Under no freakin' circumstances is anyone ever going to touch my girls other than Dr. Sullivan in New Orleans. Got it?"

What I did say: "Yes, I'll think about it, mmmmmmmm."

And we left it at that.  I'm going to call Dr. Sullivan to solicit his thoughts.  

But for now the ridge-not-quite-a-lump of dead fat is being left where it died.

 

Welcome To The Disease Of The Month Club!

On September 15, our congress, in its infinite wisdom, passed HR 1522 officially designating the last week of September as National Hereditary Breast and Ovarian Cancer (HBOC) Week and the last Wednesday of the month as National Previvor Day.

I admit that it bothers me a bit that a legislative body that can't gets it shit together to pass significant financial reform, estate tax legislation, jobs bills, and cap and trade can find the time to pass a bill recognizing HBOC.  I don’t view all of life's priorities through the narrow prism of what's important to those at risk for hereditary cancers.

Further, I think excessive cheerleading about "awareness" can sometimes serve as a distraction for what ought to be our real priorities - research, treatment, and ultimately ending prophylactic surgery as we know it.  We don't need to be "trendy".  (Although it is kinda cool to have our own app.)

That being said, there is a shocking amount of ignorance in the medical community regarding BRCA and who ought to be referred for genetic testing.  And I'm taking about gynecologists, fertility doctors and midwives, who really are on the front lines in the war against breast and ovarian cancer and ought to know better. 

I speak from personal experience.  You can read the story about how I can to know of my BRCA1 mutation here.  But if not for my new gynecologist that I met when I was forty, I might never have been referred for BRCA testing until something really bad happened. 

If not for Dr. Lucky, I might not have been so lucky. 

After I tested positive, I faced the burden of notifying my two brothers and forty first cousins (you read that right - forty - my father was one of eight children) that we now had a known BRCA mutation in the family.   Not a single one of them had ever been tested for a BRCA mutation despite a very suspicious family history.  I was the first.  The canary in the coal mine.   

We are lucky though because no one in the family in my generation has gotten cancer and we range in age from fifty-four down to my youngest first cousin who is twenty.   I do take some comfort in knowing that my ordeal with BRCA may have saved more than just my own skin. 

So yes, we do indeed need more awareness.  And thus, curmudgeon that I am, I am happy to be a supporter of HBOC Week. 

So what should we do to celebrate Previvor Day? 

For As Long As I Know How To Love, I Know That I Will Thrive

I usually don't react to blogger noise, particularly to spew like this but I felt that this post, and particularly the comments that followed it, was so ignorant and misguided that I thought I would post a few remarks here.

 

First, let's address the ignorance:

 

Chantelle writes:

 

I have a strongly negative visceral reaction to the word "previvor". I get that people want a label, but this one implies that they're going to develop a disease - which is by no means certain - and that they're the only ones who are genetically predisposed to develop it - which they can't know, because researchers have only found two genes so far that are connected to breast and ovarian cancer.

 

Fact:  BRCA carriers have a 60% - 80% lifetime risk of developing breast cancer and a 25 - 45% lifetime risk of developing ovarian cancer.  So yes, Chantelle, you're quite correct that developing these diseases is by "no means certain" but how much certainty do you require?  Given these statistics, the OVERWHELMING MAJORITY of mutation carriers, without significant medical intervention, i.e., extensive surgery, WILL get cancer.  Simple as that.  Hence the term "previvor" - a group of women who face a highly elevated, sufficient threat of specific diseases not shared by the rest of the population. 

 

There seems to be this pop psychology belief that having BRCA mutations just means that you know what's wrong with your genes but hey, doesn't everyone has some fucked up genes?  They just haven't identified them yet, so why get all worked up over this?  Ya know, live your life, drink some wheat germ shots, work out regularly and you'll be just fine. 

 

The above is an example of some especially dumb and lazy thinking.  Mutants like me are categorically not like everyone else.  If you have any doubt about that, try calling up your local friendly life insurance salesman, tell him you're a BRCA carrier but otherwise in excellent health and ask him to sell you some life insurance.  If you want to know your life expectancy, don’t ask a doctor, ask a life insurance agent.  When he calls you back to inform you that you're "uninsurable" you will quickly discover, as this study demonstrates, that a BRCA carrier, without medical intervention, has a significantly reduced life expectancy.  A BRCA1 carrier like me, without surgery or surveillance, only has a 53% chance of making it to the age of 70.  Everyone else?  84%.  Without medical intervention, nearly one out of every two BRCA1 carriers would be dead before age 70.    

 

In plain English - we die often and we die young. 

 

Yes, we are special.

 

Not in a good way : (

 

That's the ignorant part of the equation.  Now let's talk about the sadly misguided part: When people complain about the term "previvor", what they're really complaining about is the idea that people who have never had cancer somehow have the chutzpah to think that they're somehow entitled to share a collective consciousness build around a common medical burden that involves the most dreaded diesese known to humankind: cancer.  It's not about semantics but rather the whole "you never had cancer so you haven't suffered enough so shut your fucking mouth" mentality.  Chantelle's little rant may as well have been a companion piece to this similarly ignorant piece of internet shit where a self-hating mutant came straight out and said it:

 

To think that someone is deserving of a name associated with the word survivor, when you haven't actually survived anything, disgusts me.

 

Having gone through three surgeries in five months, the first of which lasted eight hours, hospitalized me for three days and had me debilitated and on pain-killers for a month, the second of which left me permantly infertile, severely estrogen deprived and dependent on my little blue "happy" pills (we don't use the "m" work around here), and the third of which scarred me from the end of one hip to the other, I take issue with the notion that I haven't "survived anything". 

 

As a factual matter.

 

But what I did and did not survive is besides the point.   Once you start playing the game of "comparative suffering", you are worshipping an idol that will lead you straight to hell.  Once you start quantifying suffering in an effort to ration compassion, you will quickly discover that there's always someone standing in line who's suffered more. Why should women who survive breast cancer get sympathy when there are people who get pancreatic cancer or lung cancer, both of which typically have much worse outcomes than breast cancer?  And why do people with DCIS get to say that they've had "cancer" when we all know that 98% of them are fully cured?  And they don't even need chemo, for fuck's sake???  How about all of those bullshit "good" cancers, like most skin cancers and thyroid cancers - why do those people have awareness campaigns ("Check your neck!") and support groups when they enjoy spectacular cure rates with minor surgeries and no chemo?  I had far more surgery than the typical skin cancer patient but I guess they get to be a "survivor" but I'm nothing identifiable - just a whiner with some crappy genes who "voluntarily" had lots of surgery.   

 

No, we can not allow ourselves to think this way.  Compassion is not a fossil fuel.   There is an infinite supply of it and giving some to one does not dimish or detract from the suffering of another. 

 

No one has a monopoly on suffering.  Or on what it means to be a survivor.  Not Chantelle, not the nefarious BRCAPositive, not Beyonce (whose definition is somewhat circular and redundant but effective in its message nonetheless).

 

I'm a survivor,
I'm not gonna give up,
I'm not gon' stop,
I'm gonna work harder,
I'm a survivor,
I'm gonna make it,
I will survive,
Keep on survivin'.

 

On Revision

Believe it or not, it has already been three months since my final revision surgery.  So last night I finally got around to taking some photos of the final product.   If you'd like to see them, please email me at sandradginzburg@yahoo.com. 

Having the pictures caused me to take a critical look at the work product.  Here I was thinking this entire time that things looked pretty good but the photos confronted me with incontrovertibe proof that (i) Lefty is still noticeably bigger than Righty, (ii) I still have quite a bit of "sag", (although I guess I'm to blame for that since I told my doctor to only do a modified breast lift since I still wanted to look "natural"), and (iii) Righty has a slight tendency to wander sideways, like the boob is craning its neck to view a train wreck on my right side. Weird. 

Be that as it may, I have no intention of going under the knife again to correct these minor defects.  I knew going in that I would have two surgeries and two surgeries is what I had.  I have no need or desire for more.  At this point, these defects are more amusing than annoying.  And hey, my original girls were far from perfect in appearance too, not to mention their murderous potential.  So I think I need to be more forgiving of my imperfect, docile replacements.

Seems like the question of when to call it a day on reconstruction has been on the minds of some of my fellow mutants out there.  Steph considered further revision of her one-step reconstruction but ultimately decided that she was happy with things as they are.  Teri  has been so screwed over by complications and the existential crisis that said complications have provoked that she is considering foregoing her "second stage" (see below). Megs just had her revision surgery last week and you can see her before and after photos on her blog.  She's already looking terrific.  And another BRCA friend, Karen (not a blogger), had additional surgery last week to resolve a nagging pain in her right implant.  Hope you're back to your vivacious self soon, Karen!   

About the "Second Stage": Teri and I had the same type of reconstructive surgery - so-called "free-flap" reconstruction in which fat is harvested from another site in the body and transplated, blood vessels and all, to form new "living" breasts.  (It's called "free" because the tissue is completely released from the body without sacrificing any muscle to sustain the blood vessels.)  Most flap reconstructions are planned as two surgeries - although the mastectomy and reconstruction is completed in the first surgery (the "first stage"), the "second stage" gives the plastic surgeon the opportunity to further shape and contour the breasts and to create symmetry.  In addition, during the second stage the plastic surgeon can also improve the outcome of the donor site -in my case, this involved liposuction on my thighs to bring my legs into proportion with my torso and scar revision on my hips as those scars had healed quite badly.  Thus, when having a free flap reconstruction, at least one revision is typically part of the package.

After my first stage, I thought my reconstructed boobs looked pretty good.  And if not for the thick and scaly scars on my back, I might have passed on my "second stage".  But since those scars looked truly awful, I knew that I was going back for more.  And once I was being put under anyway, I was happy to take the surgeon's suggestions for lifting and contouring the girls. 

Well, I'm here to tell you that I was a fool.   Now that I have my photos, I can see the dramatic difference between the results after my first stage and what we ended up with after my second stage.  There is really no comparison.   Despite the flaws detailed above, I am truly pleased.  Not exactly my ideal - that would be Greta Gerwig parading around topless in Greenberg (that girl has seriously perfect tits) - but waaaay closer than what I had after my first stage.

So why do so many of us struggle with the question of whether we should pursue further revision when we're not completely happy with how our reconstructions look? Or worse, when the reconstruction is painful or seriously cosmetically flawed?  Obviously, like Teri, we definitely get to a place of "surgery fatigue".   Undergoing surgery is hard physically, emotionally, financially and logistically.  Once the surgery isn't strictly speaking medically necessary, we may feel that taking all of that on just isn't worth it. 

But on another level, I feel that perhaps we start to feel guilty about wanting "perfect breasts".  Sometimes I think, "I did this to reduce my risk, not to have a perfect rack" so I should just be satisfied that I achieved that and shut up about about Righty wandering off the reservation.  But then I think, why should I be forced to choose between avoiding cancer and looking good?   Yes, I had mastectomy and reconstruction to reduce my risk.  Yes, I "paid the price" of giving up my breasts in exchange for risk reduction.  But how frickin high does that price have to be?  I was prepared to keep on renegotiating this raw deal until I got a reconstruction that I was completely satisfied with.  I came to believe that if benefitting from mastectomy somehow meant that I deserved to end up uglier than I started, well then it would just be slippery to feeling the need to explain and justify why I had reconstruction in the first place. 

After all, many women have mastectomy without reconstruction.  I have tremendous respect and admiration for them.  Given my 1970s style unreconstructed (ha!) feminist sensibilities, I considered it.  For like a nanosecond. In the end, I must admit that my decision to have a prophylactic mastectomy was inextricably linked to my expectation of a good reconstruction.  I don't know if I would have been able to do it if I believed that I would be left looking significantly different.  I know that I'm a mutant, but I masquerade in the world as though I were normal.  I have no desire to look noticeably different from the average woman and I would feel horribly self-conscious trying to make my way in the world as a flat-top.  Again, that's just me.  Still, the relatively modest goal of "looking normal" could have been achieved without the extensive state of the art reconstruction that I had.  But once I decided to have reconstruction, there didn't seem to be much point in "settling".  I was going to have it so it may as well be the best state of the art reconstruction available today.   I wasn't going half-assed on my reconstruction.  I wanted the full ass and that's what I got.  Yes, I am now officially built ass-backwards!

Perhaps there's something else at work here: Many of us who opt for reconstruction are not the kind of the people who would have plastic surgery for purely cosmetic reasons.  (Well, I might but now I'm talking about you guys with the good value systems.)  Thus, when faced with the possibility of additional revision surgery, we find ourselves walking on the thin line between the reasons we feel are a "legitimate" use of plastic surgery - namely the desire to feel "normal" and those that we don’t feel aren't justified ("I want to look fabulous.  Perfect.  You know, like Heidi Montag.")  Well, I'm here to tell you, my friends and mutants, that the aforementioned thin line doesn't really exist.  Not when it comes to reconstruction.  Only you can decide for yourself how close to "perfect" you need to get to feel "normal".  I feel quite normal with a side-wandering Righty but I wouldn't feel normal if I couldn't wear a bra comfortably or sleep on my stomach anymore.  (One of the many reasons that I realized implants weren't going to work for me.)    

I'm not saying that as mutants we should keep going back for more and more surgery until the surgeon attains some Platonic state of perfection.  As soon as I felt good mentally and physically, I knew it was time to stop. 

But a mutants shouldn't pass on revision out of fear that she's somehow turning into Janice Dickinson. 

But more importantly, a mutant shouldn't pass on revision because she feels like she deserves to look worse than she did before as some sort of tangible, visible sacrifice to avoid the fate of her mother or her aunt.

Living with this fucking mutation day in and day out forever is sacrifice enough. 

 

I'm A Mutant, Not A Guinea Pig

A few months ago, I read a fascinating book by Rebecca Skloot, The Immortal Life of Henrietta Lacks.  Skloot's book is required reading for anyone interested in the confluence of genetics, research, medicine, law and ethics. 

 

Like the titular Henrietta, I happen to have some valuable genetic material that researchers are keenly interested in.   When I was a patient at CancersRUs, I was regularly and frequently asked to participate in research studies.  Most were merely simple questionnaires or requests for interviews about my "feelings".  But one doctor asked me to donate my ovaries to his study after I had them removed.   This request came from the doctor who was in charge of my ovarian "surveillance" (before I decided to have an oophorectomy, I dutifully showed up for my semi-annual sonogram and CA-125 test) and I have to admit that it that I found it quite bizarre and rather off-putting.  The decision to have my ovaries removed was mine and mine alone.  I did not care that it was the "standard of care" for BRCA1 carriers like me and that I was already five years past the recommended age (35) beyond which I was expected to surrender my ovaries without a fuss.  The last thing I wanted was a doctor treating me who had an ulterior motive for wanting to get his hands on my ovaries beyond saving me from ovarian cancer - namely the advancement of his research agenda.  

 

(In the end, I sought advice and counsel from a different doctor at a different cancer center.  She ultimately performed my oophorectomy in April.  She has never asked me to participate in any research.)  

 

When I was first asked to participate in studies, I readily agreed.  Like many mutants, I believed that further "research" would surely benefit BRCA carriers - that a further understanding of these genetic mutations and how they cause cancer might save future generations from the rock vs. hard place choices that we mutants face.   But the request for my ovaries and Henrietta's story got me thinking - what exactly is my family history, blood, organs, and "feelings" being used to study?  Is my assumption about "research" necessarily benefiting the patient population being studied correct or naive?  Don’t I have the right to know exactly what is being studied and what the objectives of the research are before I sign on as lab rat?

 

All of this hit home for me at the FORCE conference in June.  There was a panel discussion with some of the leading researchers in the BRCA world today.  Each one presented papers under the banner "Latest Developments in BRCA Research".  What I found so dispiriting was that the dominant themes of the majority of BRCA research being conducted today is (i) refining our understanding of BRCA "penetrance", i.e., which BRCA carriers get which types of cancer at which ages, and (ii) articulating the advantages and disadvantages of prophylactic surgery - how well it works at preventing the relevant cancers and what the negative physical and psychological effects of these surgeries are.  What about MY agenda - finding an alternative to prophylactic surgery and ending it once and for all, especially oophorectomy?  Perhaps a method of repairing the flawed DNA, reliable ovarian surveillance that isn't a total joke, a cancer vaccine, something, anything.  As far as this mutant is concerned, if we are not moving towards the goal of ending prophylactic surgery, then all of the research is a pile of bullshit - who cares whether BRCA1 carriers have a 10% chance of ovarian cancer before age 50 or if it's 15% depending on whether you have a exon 17 deletion or an exon 12 translocation?  We're all getting our ovaries yanked at 35 so what the fuck difference does it make?  See my point?

 

One researcher at the conference, for the protection of the innocent I shall call him Dr. Nimrod, gave a lengthy dissertation on the negative lifestyle impacts of premenopausal oophorectomy.  There were lots of incomprehensible multi-colored slides and graphs demonstrating that while oophorectomy prevents ovarian cancer and adds years of life expectancy to a BRCA1 carrier, there are many negative side effects, including, but not limited to, vasomotor symptoms (hot flashes), diminished libido and sexual enjoyment, and increased risks of osteoporosis and cardiac disease. Women who take some form of hormone replacement therapy do better in all of these categories than those who do not but they still experience far more of these side effects than women who have not had a premenopausal oophorectomy.  Finally, he announced with undisguised glee, "and our next study will be examine the effects on cognition of oophorectomy."

 

The Q & A session followed.  I timidly went up to the mike and asked the question that had been on my mind but had not even been broached by any of the speakers in the two days of presentations that I had sat through thus far:  "Doctor, do you ever foresee a time when premenopausal prophylactic oophorectomy is not the primary risk-reducing strategy for BRCA carriers?"

 

He paused for a moment and looked at me as if I had just sprouted a second head.  "Well, what would you replace it with?" he finally replied with more than an hint of irritation.  "I mean, given its efficacy, you would only want to replace it with something equally effective.  I don't see that happening anytime soon."

 

So here we have the reputed leading expect in the world on BRCA and his intellectual interests extend no further than documenting and quantifying all of the terrible things that prophylactic surgeries do to the people who are subjected to them.  I had the distinct impression that these researchers sit around patting themselves on the back thinking things like "hey, Ms. Mutant, although all  of these bad things are going to happen to you, at least you won't get cancer (well, you might get cancer but not breast cancer or ovarian cancer) so shut your ungrateful mouth and stop complaining."  There is a striking disconnect between patient experience and research priorities.

 

Further, I disagree with the premise that the only acceptable replacement for prophylactic oophorectomy would be another strategy that reduced risk equally. There will always be a minority of BRCA carriers, like Masha Gessen, who will not accept premenopausal (or perhaps even postmenopausal) oophorectomy, no matter what.   So they're basically fucked, is that it? Wouldn't they benefit from a risk reducing strategy that reliably reduces risk to the some degree but would be more acceptable because it did not carry the same side effects?  Wouldn't a lot of women accept lesser risk reduction in exchange for fewer side effects? I might have.

 

And why did he ask me what "I would replace it with"?  Setting aside the condescending sarcasm that the question implies, isn't answering that question supposed to be his job? He's the one who's made a name for himself publishing study after study on BRCA.  I'm just the mutant around here, not the professional.

 

And what exactly is the point of scientifically demonstrating that premenopausal oophorectomy has a negative impact on cognition, if there is no alternative anyway? Are they going to put me on Alzheimer's drugs? Tell me to do more crossword puzzles?  And do I really need more bad news about how terrible oophorectomy really is when it all boils down to a choice between that and taking a chance on a spectacularly elevated risk of one of the deadliest forms of cancer? 

 

 

And that leads us to the bigger question:  Do researchers have an obligation to demonstrate that their research has an actual nexus to improving the lives of the population being studied? 

 

For this mutant, the answer to that question is a resounding yes, and thus far, I have declined all requests for research participation. 

 

Until their agenda is my agenda, I'm keeping these genes to myself.

No Shit Sherlock

Prophylactic mastectomy is major surgery that carries major risks of both life threatening and life altering complications.

Duh.

I'm not usually in the PSA business and stating the obvious isn't my idea of fun. But it seems to me that we sometimes lose sight of the fact that, contrary to some of the propaganda on certain message boards, not everyone emerges from a prophylactic mastectomy and reconstruction unscathed and with gorgeous boobs that they absolutely love, love, love.

My own experience with prophylactic bilateral mastectomy ("PBM") may also contribute to a false impression that PBM is a pretty straightforward exercise in replacing one set of boobs with another. Or as a commenter on a message board so blithely put it, "it's kinda like changing the stuffing on a throw pillow. Like an extreme breast reduction".

Uh no.

Yes, I had a PBM and I was truly fortunate to have had no complications and excellent cosmetic results. For me, everything went according to plan - PBM with immediate hip flap reconstruction followed by a "stage 2" revision surgery four months later. I was hospitalized for both surgeries for the exact number of days predicted by my doctors. I took off from work for exactly the number of weeks I was instructed to do so and I resumed all other activities on schedule.

But many of my fellow mutants in arms have not been so fortunate. Teri lost the flap on her right side to necrosis, had the flap replaced, and then developed life-threatening blood clots in her lungs. Kaycee lost an expander to a horrible infection just a few short weeks before her exchange, forcing her to have to undergo expansion all over again. Megs' "one-step" didn't exactly work out that way.

You are all very brave fellow travelers. Get well soon everybody.

Despite my high satisfaction level with the outcome of my PBM, I have been very careful in this blog to maintain my sensitivity to the daunting ambiguity that mutants encounter when faced with these decisions. I remain highly conflicted about all of this.

Sometimes I receive emails from newly diagnosed mutants who are considering PBM. I don't really know what to say. I would not presume that what I did is right for anyone else. I can't pretend that doing this is easy, obvious, a no-brainer. Things can go wrong. Very wrong. 

But I can offer  empathy, some degree of understanding and my willingness (or perhaps my need) to act as the contrarian in all of this.