I'm A Mutant

CancersRUs

I have just completed my first round of "surveillance" at CancersRUs.

CancersRUs is a major urban cancer center.  I call it that because it is a veritable emporium of cancer.  The elevator in the outpatient building, where I am seen, has large square screens that light up across the top of the doors with descriptions of what can be found on each floor, just like the elevator at Saks Fifth Avenue.  Except that instead of "Accessories", "Shoes", "Coats" and "Contemporary Sportswear", you get "Sarcomas", "Melanomas", "Gynecological Cancers", "Chemotherapy" etc, etc.  

You know you're not in Kansas anymore when the information packet comes with a DNR form.

The people that work there are kind and compassionate but as soon as you arrive for an appointment, you have the distinct feeling that you are being processed on a conveyor belt in a giant cancer factory.  After you check in, you wait in an enormous waiting room until someone comes out and calls your name really really loudly.  Once I was in the ladies room when my name got called and I had to sit there helplessly trying to finish my paperwork while my name was shouted over and over again all over the place.  After that, you go down another corridor, another set of doors, this room, that room, and you get handed off to this one, that one, the schmata gowns, etc, etc, wait here, wait there, etc, etc, until you finally see the doctor that you came to see or have the test that you came to have.   At first, I was really happy that I was being taken care of at CRU.  They are the "name brand" in cancer.  But as I have completed my first round of "surveillance" visits, I have begun to rethink the wisdom of having all of my care there.

Visits to CRU are a soul destroying experience for me.  The waiting room on the gynecology floor is filled with, duh, women who have breast and ovarian cancer.  I have profound "previvor's guilt".  I don't understand why fate has me handed me a "Get Out of Cancer Free" card while these women suffer.  Actually, it isn't exactly "free".   But the price of my ovaries and my breasts, while not exactly bargain basement, still seems like a reasonable discount.  Cancer drives a hard bargain.

And then there is the sheer anxiety.  There is a reason that we are not evolved to know the timing and cause of our own deaths.  This is information that we may not be psychologically prepared to handle.  Gazing into that crystal ball and being forced to witness firsthand what my future may look like if I don't have prophylactic surgery has almost been enough to make me get out my Wusthofs and do the surgeries myself on the kitchen table.  In fact, after one of my visits to CRU, I had a full blown panic attack.  Shaking, sweating, heart-pounding panic. I desperately needed a tranquilizer but all I had was an Advil so I took that and sat on a park bench for an hour before I could return to my office.  

A well respected gynecologist/oncologist in private practice is beginning to look like a really good idea. . .

From the Department of WTF

Things That Cause Cancer

Birth Control Pills 

Things That Prevent Cancer

Birth Control Pills

Things That Cause Insanity

Making lists of things that cause cancer and things that prevent cancer.

Would you rather???

I allow for the possibility that I may be over thinking this.  I am by nature a contrarian.  As soon as there is a consensus, a conventional wisdom, or an orthodoxy about just about anything - you can count me out.  But while my contrarian nature has enabled me to accomplish things that, based on the conventional wisdom, would have seemed impossible, it may not work in my favor in this case. 

 

Sometimes the conventional wisdom gets to be conventional, not so much because it has been adopted by the mass of those living the lives of quiet desperation, but rather because it does happen to be intrinsically true and valid.

 

I would have made a good litigator.  I can pick a side and argue its merits convincingly.  I can even convince myself.

 

But here's the thing:

 

I DON'T WANT TO GET FUCKING CANCER AND DIE.

 

And I don't want to talk myself out of a prophylactic surgery that may be all that stands between me and the big C.

 

And really, maybe I am working this whole "surgical menopause" thing up in my mind into some kind of bogeyman that is far worse in my imagination than it would ever be in real life.  The worst and most immediate symptoms (hot flashes, dryness, sleeplessness, depression) can actually be controlled very well with HRT.  Furthermore, I exercise, I eat right etc and healthy living really makes a big difference in how well women manage these symptoms. 

 

As far as everything else is concerned, well let's indulge in a little game that my kids like to play called "Would you rather?"  It goes something like this: 

 

Would you rather eat gum off the bottom of my shoes or sleep with three African cockroaches? 

 

Would you rather have to clean Grandma J's dentures with your toothbrush or let Grandma T sit on you for a hour. 

 

You get the idea. 

 

So how about this:

 

Would you rather get ovarian cancer or drop dead of a heart attack? 

 

I pick heart attack. That's a gimme.  You always pick fast horrible death over slow horrible death.

 

Would you rather get ovarian cancer or slip on the ice and die of a broken hip at the age of 65?  

 

But that isn't really fair because bone loss in mutants is monitored and it is reversible.  And let us not forget Sally Field and Boniva.  Yippee!  Boniva!

 

Would you rather get ovarian cancer or suffer verbal memory lapses that may interfere with your career? 

 

Tricky, tricky.  I'm not a writer (duh) but my ability to earn a living is highly dependent on my ability to communicate highly technical and arcane information clearly.  I also write for trade journals, speak at conferences and teach extensively regarding such arcana.  I can't imagine how I would be able to do this if my vocabulary was compromised.  

 

And finally:

 

Would you rather get ovarian cancer or enjoy at least ten more years of glorious Boy Toy shagging? 

 

Shagging. Of course.  Another gimme. 

 

In the end, it always comes back to the shagging.  But the thing is, despite the vogue of the Cougar, I really am not a cat.  Supposedly humans are evolved to depend on the sexuality of the mind as much as the sexuality of the body.  Based on the men I've known (mostly a paltry and pathetic bunch to be sure), I have reason to doubt that theory but it is supposedly so.  So maybe between the toys, the little outfits, whatever, we figure out a way to get it on, ovaries or no ovaries.

 

And anyway, does everything really have to be all about sex???? There are other sensual pleasures in life - a fine Brunello, a Paganini caprice, an afternoon in the shoe department at Bloomingdale's.   Boy Toy and I can go on enjoying those things together every bit as much as we do now.  If I end up sexually useless, we can always just hire somebody to help him out, right?  (I mean, you know, just in case.  I'm a "plan ahead" kind of mutant.)

 

And anyway, how good is my quality of life when every time I have a stomach ache, I think that it's a harbinger of my untimely death???

 

In the face of this degree of vacillation, there is only one thing to do:  Wait.

 

No more doctors, tests, research or game plans until after my July vacation.  I'll take up the cause again in August. I need to give it a rest for a while. 

 

Hopefully, time will give me some clarity.

Dealer's Choice

So ok, this is going to be a long, rambling one. . .

I didn't start this blog in order to document a Lorenzo's Oil-esque medical quest.  It was supposed to be about my "feelings".  (Yes, even mutants occasionally have "feelings".) 

When I first "found out", my initial reaction was "I want these ovaries out NOW."  The boobs could wait.  This was the approach suggested by the genetics counselor and more obviously advanced by doctors at the major cancer center where I have been seen.  It is certainly obvious and rational.  Consider:

1.    I perceive ovarian cancer as a much greater threat to my life than breast cancer. My beloved auntie died of ovarian cancer in her early 50s so personal experience definitely colors my perception of risk. 

2.    I worry about ovarian cancer actually killing me much more than breast cancer even though my odds of developing breast cancer are actually much much higher (about 85%) than my odds of developing ovarian cancer (about 45% for my mutation, but I get a deep discount on that because I used birth control for many years so my personal risk is about 25%).  For one thing, unlike breast cancer, there really is no effective early detection for ovarian cancer.  Dr. Statistics told me that in BRCA women following close surveillance, 90% of breast cancer is detected in a "curable stage".  In contrast, at least 50%, and perhaps 75% of ovarian cancer is found "too late", despite surveillance. 

3.  Bilateral salpingo-oophorectomy (BSO), especially if done before age 40, has been shown to dramatically reduce the risk of breast cancer in BRCA women - by about 50%, thereby further obviating the absolute necessity for prophylactic mastectomy.

These are all very legitimate arguments in favor of BSO in accordance with the prevailing medical orthodoxy which for BRCA1 mutants like me is "upon age 35 or the completion of childbearing".   I'm 40.  If the three little maniacs that occupy my home are any indication, I've "completed childbearing".  So there you go.  And in fact, my initial game plan was to arrange for BSO this fall (it is surprisingly minor surgery), take HRT thereafter, and get on with my life.   I'd give further thought to prophylactic mastectomy thereafter.   It seemed pretty straightforward.

But the more I've thought about this, the more obstreperous I've become about the whole thing.  Before I renovated my kitchen, I spent hours comparing the relative merits of granite vs. corian vs. poured concrete vs. butcher block.  (I went with the granite and I've never regretted it.)  Didn't I owe myself far more due diligence with respect to a decision that would have an irreversible impact on my life?

And so I began spending lots of time with Dr. Google along with frequent trips to the FORCE message boards.  The point of all of this, at least in my mind, was not to find a way out of the BSO per se.  I WILL have my ovaries surgically removed from my body at some point, probably before I am 45 - 46 or so.  However, the real question for me became about TIMING.  WHEN?  Did I really have to do this TODAY? 

As I began to sift through all of the information I could get my hands on and I began to consult with doctors, other facets of BSO and in particular, the TIMING of it, began to emerge that I felt I had to consider. Here they are for your perusal, in no particular order:

1.    Oophorectomy at a young age (say prior to age 45) does in fact shorten a woman's life expectancy, especially if HRT is not used.  This is not even medically controversial.  This study, of course, was not of BRCA women who are basically already fucked anyway in terms of life expectancy.  But the fact remains that even though I am a mutant, my heart, my brain and my bones work just like everyone else's.   Even in a mutant, these physical systems will not work as well by being hormonally deprived at a young age.   This leads us to my second conclusion:

2.       The optimal timing of prophylactic oophorectomy in BRCA1+ women has never been established.  The age of 35 is chosen because that is youngest age that a BRCA1 mutant has a reasonable risk of ovarian cancer, although it is still very, very low at that point.  It seems to me that the objective of picking 35 is to insure that just about nobody gets ovarian cancer.  Good.  That would be the correct objective if there weren't significant collateral damage from these surgeries.  However, there are significant drawbacks to this surgery at such a young age, both in terms of quality of life issues and in terms of long term life expectancy and health. 

3.    At least in my experience so far, doctors consistently downplay the impact of surgical menopause on a woman's overall quality of life, and in particular on her sex life.  In my personal experience, the doctors have make it sound like the biggest problem I'm ever going to have after the surgery is picking out a favorite vaginal lubricant. There really isn't much out there on the whole quality of life after BSO issue and the little that exists is really "survey" research that stands for the proposition that the answer that you get depends upon the question that you ask. 

Google "prophylactic oophorectomy and quality of life" and what you will find is that all of the studies, without exception, concede that women who have this surgery are significantly sexually compromised.   And let's understand what loss of libido means.  In my experience, for example when I was breastfeeding (which is a good  example of what happens to me when my ovaries go on vacation), I had no interest in having sex.  ZERO.  In fact, I had an active desire NOT to have sex.  So more like zero Kelvin in terms of actual temperature.  I think I would rather have renewed my driver's license at the New York City DMV than have sex. (At least at the DMV no one is going to get offended if you read a book while you wait.)  Yeah, my vagina was still there so I could lay there making a mental grocery list or deciding upon the color I wanted for next Thursday's manicure (mauve? peach? magenta?) but I wouldn't describe that as sexually functional.

4.    My odds of actually getting ovarian cancer within the next five years, say before I'm 45, are still very very low, maybe 5% maximum. But again I get a deep discount on that because I used birth control pills for many years. Any risk at all is still terrifying but let us not forget that (i) the majority of women who get ovarian cancer are NOT BRCA carriers, (ii) all women have a lifetime risk of getting ovarian cancer of 1.5%.  There is no getting around that and nobody is advocating oophorectomies for everybody (at least not anymore), and (iii) BRCA carriers who do have BSO still have a lifetime risk of 1 - 3% of getting primary peritoneal cancer which is basically the same thing as ovarian cancer but it arises in the abdominal lining and no one is advocating omnectomies (removing the abdominal lining) for BRCA carriers.  The point of this discourse is to say that once you get your risk factors down to the low single digits (or, I should say, while your risk factors are still in the low single digits because there is no question that my personal risk is rising as I age), it is entirely rational to take a "just live with it for now" stance rather than rushing into irreversible surgery.   

5.  The most recent research on BRCA ovarian cancer shows that many of these "ovarian" cancers, if not most of them, originate in the fallopian tubes, not in the ovaries. 

I think this point is important enough to quote directly:

This recognition that fallopian tube cancers represent the majority of clinically occult malignancies identified in RRSO [risk-reducing salping-oophorectomy] specimens led to a novel hypothesis of pelvic serous cancer pathogenesis, which posits that a substantial proportion of what has previously been classified as "ovarian cancer" may, in fact, be carcinoma of fallopian tube origin (8), an observation that may profoundly alter the paradigms related to ovarian cancer etiology and management. 

Therefore, it stands to reason that the already low risk that I have (for the next five years) can be reduced even further by salpingectomy alone (having just my fallopian tubes removed now and the ovaries removed when I am 45.) 

    As I synthesized these considerations, I started to think that the decision set really boiled down to three alternatives:

1. Hold Em:  Do nothing now and sweat it out for five years with the "surveillance", i.e., ultrasounds and CA-125 levels every six months;

2.  Fold Em:  Have the BSO now, use HRT to deal with the worst side effects of the surgical menopause, and hope for the best with respect to all of the unknowns; and

3.  Bluff:  Go with a salpingectomy now and take the ovaries in five years. 

    Option 1 maintains me intact but offers me zero risk reduction.  Option 2 maximizes my risk reduction to the fullest degree possible but may compromise my life in many ways that are difficult to quantify.  Option 3 splits the difference - no quality of life impact, but it may or may not reduce risk.

Of course what is so appealing about Option 3 is that it seems to offer some sort of a hedge.  In my view, whether salpingectomy actually reduces risk or not, it still provides an opportunity for the surgeon to go in there with the laparascopic camera, which is infinitely superior to the dildocam, and get a good look around.  If anything suspicious is seen or found on the pathology of the tubes, I can have the BSO.  If it looks good, I probably will have bought myself some time.  

In fact, it seems so plainly obvious to me that salpingectomy made sense that I realized that someone in the BRCA community must have already thought of this.  So I posted an inquiry on the FORCE message boards asking that very question.  Sue Friedman, the founder of FORCE, and a stalwart pillar of support to all of us mutants, posted the following reply:

I specifically asked this question of noted gynecologic-oncologist Dr. Elizabeth Swisher from University of Washington who presented at our conference. She was generous in her willingness to address the topic. She comments that she has done the procedure for high-risk women who were unwilling to remove their ovaries; however she also says the following cautions about it:

"I do not recommend this approach and BSO (removal of ovaries and tubes) is the standard of care. It is also a more difficult procedure than straight BSO and I would make sure any woman contemplating this has an excellent laparoscopic surgeon to do it. I tell women to ask their surgeon how many operative (non tubal ligation) laparascopies they do monthly. They should find a surgeon who does more than one/month. And the same careful pathology should be done on any salpingectomy pathology."

The research is very preliminary but I'm glad that there are researchers looking more closely at this (including Dr. Swisher) and that there are gynecologic-oncologists willing to do this. It is important for anyone considering this surgery to be aware that not all BRCA ovarian cancers are thought to arise from the tubes and that the surgery is more complicated than a BSO.

Hugs and love,
Sue

Thus, what initially seemed like a straightforward decision turned into a morass. 

But suffice it to say that I would love to be able to stick with my pair.     

           

New Rules

In anticipation of seeking out second opinions I have some New Rules.  I figure if Bill Maher can make up New Rules, so can I. 

From now on whenever I call a doctor for a consultation, I will make it clear that we will be having a conversation and that no physical exam is required.  My problem is in my genes, not in my jeans.  I have already had enough poking around down there to last a lifetime.  And there is nothing less conducive to a collaborative discussion regarding complex medical decisions than having one party dressed in a Milgram-esque white coat and the other clad in a schmata from the Auschwitz catalog. 

Unremarkable

So I had my second consultation today with Dr. IDWTSYB.  It was not productive.  Unless I consent to a full bilateral salpingetomy-oophorectomy, there is nothing that he can do for me.  He was entirely unwilling to discuss salpingetomy or tubal ligation alone, essentially saying that it will do "nothing" for me and that he "prefers to keep it simple".   I am having a hard time believing this but I did not engage him on this point in any level of detail.  I do not view my medical consultations as opportunities to showcase my litigation and advocacy skills.  He is supposed to be MY advocate, not my adversary.  This is not the high-school debating society. 

 

If fairness, I DO accept that he is truly acting out of what he believes to be my best interests.  He was also a lot less "pushy" regarding the necessity of the surgery that I do not want when I explicitly told him that I simply was not ready to proceed at this time.   Since I stated that as plainly as possible, he took the time to go over the surveillance protocols with me and advised me to follow them.   Since surveillance for ovarian cancer has already been confirmed as ineffective, I still can not grasp why that is viewed as preferable to a modified surgery that may confer some risk-reducing benefit.  But there I go advocating again.  . .

 

Sometimes I really do get the impression that this really is not about what evidence-based medicine does or does not show but about who gets to sit in the driver's seat . . .

 

He also told me to get a second opinion from another doctor: "Maybe he will be able to do a better job convincing you to have the surgery."  Despite his overall sincerity, there were unmistakable notes of defensiveness as well.  I even found myself wondering if he is reading this blog . . .  

 

The good news is that he also went over my initial ultrasound results with me which were "unremarkable" and my CA-125 level which was very low.  His conclusion: "It doesn't get any better than that." 

 

So today I do not have cancer.

 

Apparently.

Bread Winner

From last year's New Yorker:

The doctor explained that the standard treatment would be to remove two-thirds of the visible portion of Achatz’s tongue and sew a piece of tissue, probably from his arm, onto the remnant. Achatz would have a natural-looking tongue, but it would have, at best, limited sensory function. He might even need a tube in order to eat. Achatz says he thought at first that the surgeon was joking: “I’m, like, C’mon, this is 2007. You guys don’t have this figured out by now? It’s, like, barbaric. C’mon, there’s got to be an alternative treatment.”

If they could find another way to save this guy's life, perhaps they can find another way to save mine.

If only I were an award-winning hooker .  .  . 

Tubular Bells

Now this IS interesting.

This article was published in January 2008, nearly 18 months ago.  In case you're bored already, here is the relevant part:

 

At least one study, however, suggests that the risk of death is higher for women who have bilateral- oophorectomy before the age of 45 years.If the fallopian tube is at greatest risk, it is intriguing to consider alternative strategies in women aged over 35 years, such as prophylactic salpingectomy alone and complete oophorectomy at menopause. (Emphasis added.)

 

So some "ovarian cancer" is actually cancer that starts in the tubes?  And maybe, the lives of younger BRCA carriers are best protected by taking out the tubes ONLY and delaying surgical menopause until the age that a woman would go through menopause naturally.  After all, a woman can lose both of her fallopian tubes while maintaining full functionality of her ovaries. 

Intriguing indeed.

 

However, just in case you saw that light bulb go off in my head, the author goes on to say:

 

Finally, although these results are intriguing, there is not enough evidence at present to recommend preserving the ovaries and removing only the fallopian tubes during risk-reducing surgery for ovarian and fallopian tube cancer in BRCA-positive women.

There's that word again: Intriguing.

 

But seriously, WTF????  How will there ever be enough "evidence" when the prevailing medical establishment pressures BRCA women to undergo oophorectomies at increasingly younger ages?  What about the fact that so many women DO NOT WANT to undergo surgical menopause in their early forties?  Shouldn't that be enough of a reason to FIND A WAY to give women some REAL OPTIONS besides the millimeter of space that exists between the rock and the hard place???

 

I don't have time to wait for the evidence. I am now 40 years old and as Dr. Statistics so ably put it, "you are now entering the risk zone."

Strap on your seat belts.  

Looks like it's going to be a bumpy ride.

I don't want to scare you but . . . .

I have decided to take control of the situation.  I really need to come up with a game plan so that I can get on with my life.  So, as a first step I called Dr. I-Don't-Want-To-Scare-You-But's office to arrange a second consultation.  Dr. IDWTSYB is a well known surgeon who specializes in gynecological oncology.  He is the guru of minimally invasive surgery, the Roger Federer of the laproscope. 

 

Now it must be stated for the record that Dr. IDWTSYB is a kind, compassionate, soft-spoken doctor who patiently answers your questions and looks you straight in the eye when he talks to you.  I have no reason to doubt his sincerity or his intentions.  I met Dr. IDWTSYB for the first time three weeks ago to discuss the details of my castration.  Oops, I used a naughty word.  The medically correct term is bilateral salpingo-oophorectomy.  He showed me a coloring book type drawing of a female's body below the navel and began circling all the organs that now have bright red targets painted on them.  Ovaries: Out.  Fallopian tubes: Out.  The uterus can stay.  I expressed my usual degree of distress and horror at the prospect of losing most of my perfectly healthy internal female bits, at which point, DR. IDWTSYB earned his new moniker.  Please feel free to insert the relevant phrase as applicable.  These are direct quotes:

 

"My sister-in-law has breast cancer.  Trust me, you don't want that." 

 

Really???? And here I was thinking this entire time that a bout with breast cancer would be a great summertime distraction.

 

"Osteoporosis is the least of your problems."

 

"Sometimes women wait to have the surgery and then we open them up and find an abdomen full of cancer."

 

"If you get ovarian cancer, it will ruin your life.  Even if we can cure it, you'll spend the rest of your life worrying that it will come back."

 

And finally, while looking me straight in the eye, without being asked: "If you were my wife, I would be begging you to have this surgery."

 

The thing is, I'm not his wife and even if I was, it would still be MY decision.

A Medical Success Story

I have just discovered the divine Masha Gessen.  She is a BRCA1+ writer who detailed her experiences dealing with the "options" in a series of articles that appeared in Slate .  Basically, she has articulated everything that I am feeling perfectly except that her writing is so superior to mine that I think you should read it all for yourself here and quit this blog immediately.

Here are some highlights along with my commentary:

There is a maddening disconnect between the cutting-edge science of oncogenetics and the barbaric state-of-the-art response to the discovery of a mutation: Hack everything off before it goes bad.

I often find myself filled with cold rage at a medical establishment that has written enough articles patting itself on the back for having "solved" the problem of BRCA mutations by propyhlactic surgeries.  They tout these surgeries as a medical "success story" and blather on and on about how prophylactic surgery (oophorectomy in particular) has gained "widespread acceptance".  Yah.  If you point a gun at my head and tell me to hand over my wallet, I "accept" the proposition that I'm going to lose my money.  Compliance out of sheer terror and a lack of alternatives is NOT acceptance.

It's not that I'm not terrified of cancer. Most women are, even those who didn't watch it kill their mother. But I also can't fashion an easy attitude toward the prospect of heart attacks, strokes, and broken hips.

Masha baby, you are right on the money here.  So far I have consulted two different doctors and neither one of them has really been able to squarely address the issue of collateral damage following premature menopause.  When I raised the issue with Dr. Statistics, he dismissively waved his hands like he'd heard this all before (and I'm sure he has) and told me "the biggest threat to your life is breast cancer and ovarian cancer."  The other doctor, Dr.I-Don't-Want-To-Scare-You-But, put it this way:  "Osteoporosis is the least of your problems."  Basically, I am to understand that my life expectancy is already so compromised because I am a mutant that even if the oophorectomy shaves 10 years off my life (statistically speaking, of course), ovarian cancer would shave 30, so I'm still net up 20! 

Now that's a medical success story, isn't it????