I'm A Mutant

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.

 

I really hope it's the salmon

Well the deed was done at 7:00 AM this morning.  I am now stretched out languidly across the sofa licking my wounds whilst staring aimlessly out the window.  For some reason my eyes can't stop following the fly bashing itself repeatedly into the corners of the window frame.  I feel an urgent need to put it out of its misery but I can't be bothered to get up. 

The surgery itself was kinda nerve wracking.  I had to be at the hospital, which is about 45 minutes away from my home, by 6:00 AM.  I didn't sleep at all last night and I was basically starving.  The hospital where I had it done is a large, busy, urban institution - a stark contrast to the "boutique" type hospital where I had my mastectomy.  In a place like that, you get processed on a conveyor belt - a helpless scrap of raw material in a very efficient surgery manufacturing plant.  All that time in the holding tank just served to increase my anxiety.  I was finally walked into the OR, which was as cold as a refrigerator, fully awake and alert.  I really didn't need to have a good long look at all of the medieval looking torture instruments that were shortly going to invade my tender flesh.  (When I had my mastectomy, they put me out in the holding area so I never actually saw the inside of the OR - a much better approach, in my opinion.) 

Although the staff were all polite, it quickly grows tiresome to have a steady stream of nurses, administrators, residents and doctors coming through and asking the same exact questions over and over again - name, date of birth, health history, and "tell us why you're here today".  The anesthesiologist was impressed when I said " prophylactic bilateral salpingo-oophorectomy."  "Okay, now spell it", he replied.  "Oh, is this one of those anesthesiologist tricks where I start spelling it and by the time I'm in the middle I pass out?" 

I made it to the second "p".   

I woke up with a very sore tummy and a raspy voice, but otherwise none the worse for wear.  The very lovely drug dealer  nurse came by and gave me a highly satisfactory cocktail of morphine and Demerol followed by a percoset chaser.  First one's free!  It was almost enough to make me forget about what had just happened to me.  I was up and around by about 10:00 AM and I went home at noon.  I could have gone sooner but I had to wait for Boy Toy to get to the hospital to collect me.  

I haven't had any hot flashes, my vagina is present and I don't think it's turned to beef jerky, I have all my hair, I haven't gained 30 pounds and I can still regularly identify all of my children by name with about 90% accuracy - just like before. 

So I guess I really haven't experienced any major metamorphoses.

Although I do find myself with a strange desire to sharpen my nails on the furniture and say mean things to Boy Toy just for the fun of it. 

I wonder if we'll be having chicken or salmon for dinner.

Moving Is Living

"The slower we move the faster we die. Make no mistake, moving is living. Some animals were meant to carry each other to live symbiotically over a lifetime. Star crossed lovers, monogamous swans. We are not swans. We are sharks." (Ryan Bingham, Up In The Air)

Like George Clooney's shark, I really need to keep swimming over here.  Although my ridiculously high risk of breast cancer is gone, I still have a very high risk of getting ovarian cancer, something on the order of 25% - 45%.  There is no reliable early detection.  And if I get it, there is an 80% chance that I will die of it.  Within five years.

After nearly a year of dancing around this, the only thing I know with certainty is that I have to have these forsaken ovaries removed.  On some level, I think I moved forward so decisively on my mastectomy and reconstruction because the logistical challenges of that surgery gave me a really good excuse to stop thinking about the inevitability of this one. 

And let me tell ya, I really hate thinking about this.  I hate obsessing about this.  I hate having to do this.  Of everything that has been thrown at me since I found out about my mutation, the grim cancer statistics, the mastectomy, the reconstruction, the post-surgical pain and misery, there is NOTHING that has been harder for me to take on board than the idea of having my ovaries surgically removed.

Why?

Because deep down the idea of being without ovaries fills me with a deep and abiding sense of shame - that I'll be just an old, neutered pile of human nothingness, an asexual castrated house pet.

And oh yeah, I'm resentful too.  Fucking resentful.  I'm forty-one years old.  And I resent the idea that somehow I'm supposed to go under anesthesia in the body of a forty-one year old and wake up in the body of a fifty-five year old.  After all, as I've been told over and over again, the operation will put me into "surgical menopause".

For me the problem starts right there.  What the fuck is surgical menopause anyway?  I know what menopause is.  Menopause is a natural transition that a woman's body undergoes between the ages of forty-five and fifty-five.  It is a gradual tapering off of the amount of estrogen that the ovaries produce.  Okay.  I get that.  I readily accept the ordinary transitions of a woman's life.  But there is nothing "natural" or "gradual" about so-called "surgical menopause".  Would we pretend that it was natural to yank all of the baby teeth out of a three year old's mouth?  After all, they're just going to fall out eventually anyway. . .

No my friends, for me there is no such thing as "surgical menopause".  And to call it that confuses the fundamental issue.  For a woman my age, being in a state of total estrogen deprivation is pathological.  It is a medical condition that requires treatment.  Just because a woman can live without estrogen does not make it any less pathological.  A three year old who loses his teeth to baby bottle mouth can live without them but no one thinks that this is an optimal state of being.  

So I'm not going to use the term "surgical menopause" anymore on this blog. (And it's gone from my categories too!  So there!) 

Fortunately for this mutant, my new doctor, Dr. LGR, totally gets this.  She really does.  She is a highly respected gynecologist/oncologist who treats a large number of mutant previvors, many of whom are younger than me.  She prides herself on her work and her reputation with young women.  I went to see her last Tuesday to discuss the situation.  We talked for a good forty minutes about the surgery and its aftermath and in retrospect I realized that she never used the term "surgical menopause" or "menopause" even once.  What we did talk about were side effects, symptoms and treatment options.

But the truth is that my mind was already made up.  I told her quite simply that I wanted to have the surgery with the caveat that I would go on hormone replacement therapy immediately.  When she nodded her head in complete agreement I knew that I had found a doctor who understood where I was coming from.

As an aside, I really don't give a rat's ass about the politics of HRT, whether post-menopausal women should or shouldn't use it, what Suzanne Somers thinks, or whether HRT should come from a plant, horse urine or nuns.  I don't even care about the fact that HRT has been implicated in increasing rates of post-menopausal breast cancer.  Because none of that is relevant to me.  I'm not post-menopausal and I don't have breasts anymore (well, I sorta do but not the kind that can get breast cancer).  What I do have, or will have after this surgery, is a really bad case of abnormal estrogen deprivation.

So my real agenda was HRT - what it could and couldn't do for me, what the options were and what Dr. LGR thought would be best for me.  The answer turned out to be both simple and obvious.  Since I'm already on birth control pills to prevent pregnancy (and ovarian cancer), I could just stay on them.  At least for the next five to ten years.  No need to decide now.  Dr. LGR seems to think that I will pretty much feel exactly the same after the surgery as I do now since my circulating estrogen is already controlled by these pills and not my dormant ovaries.  The only difference would be that instead of a placebo week, I would just take active pills continuously.  Which led me to ask if it made sense to switch to one of the newer "no period" pills that have all of those cool commercials with the colorful flowers blooming and the young artsy type women who look like they get laid a lot.  (I may need estrogen but I certainly don't need the messy panties once a month.)  Dr. LGR agreed so I'm starting on the "get laid a lot" pills tomorrow.  Now that really is something to look forward to! 

And that is that.

I will have the surgery mid-April.        

We Can't Go On Like This

I am happy to report that I have a new doctor and I like her very much.  I shall refer to her as Dr. Let's-Get-Real and I do mean that as a compliment.  Since we're coming up on six months since my last ovarian inspection it was time for me to go in for an ultrasound and CA-125 blood test, the typical maintenance routine for mutants that still have ovaries.  I was supposed to see Dr. Statistics at Cancer-R-Us but I had a business trip that conflicted with my appointment and I couldn't get out of it.  When I called his office to reschedule, I was told that he wouldn't be able to see me until early February.  When I explained that this wasn't going to work because I would still be recovering from my mastectomy, I was told that the next available appointment after that was early March.  When I complained that a mutant like me is really not supposed to go for such a long period of time without an ovarian inspection, I was told that Dr. Statistics only sees patients one day a week so it was basically my problem.  At which point, it dawned on me that I am not only a patient and a mutant but I am also a consumer with excellent health insurance.  There are many cancer centers and famous "BRCA" docs in this city so there was no reason for me not to vote with my feet. 

So I called one of the competitors of Cancers-R-Us and I got hooked up with a lady doc who is very well spoken of on the FORCE message boards.  I was able to get in to see her last week. 

The rival cancer center is a full service cancer center too but it is much smaller and grittier than CRU.  I guess I'll just call it the Cancer Bodega.  The first thing that I noticed in the waiting room was that there was a surfeit of young women waiting to see Dr. LGR.  They looked pretty healthy so I was wondering what they were all doing there since Dr. LGR specializes in the treatment of ovarian cancer.  It was then that I remembered that the receptionist at the CB mentioned that they do the "surveillance" there one day a month.  I was in a room filled with my fellow mutants!

Anyway, the CB is not an especially well run operation.  The typical visit for "ovarian surveillance" consists of an ultrasound, a CA-125 blood test and a physical exam.  I got through it all but it took over three hours! 

Despite the aggravation of waiting for hours wearing little more than a vile green smock, I liked Dr. LGR just fine.  She's a warm and open person, easy to get to know, direct.   I can't say that in substance she told me anything different from what Dr. Statistics at CRU told me but it was her demeanor that made all the difference.  I felt that she actually had some interest in listening to me, getting to know me, letting me direct the conversation, rather than setting the agenda.  And she didn't hide behind her white coat - on the subject of oophorectomy she acknowledged that the idea of removing healthy organs to prevent cancer is "crazy" (her choice of words) but she also said "but ovarian cancer is worse and I hate ovarian cancer more."  She admitted that she wished that she had something better to offer me and that she wholeheartedly believed that there would be something better for the next generation of women who have to face this down because "we can't go on like this". 

Perhaps I've just been waiting for one doctor with enough clarity to not mistake the lesser of two evils for something inherently good.

No, we can't go on like this.   

Update and Some Tentative Decisions

I know that I've been neglecting this blog lately.  The main reason being that life, as they say, goes on, and I have had very little time and mental energy to devote to all things BRCA. I have some careers issues that have to be resolved, I'm thinking of selling my house and I had to get the Freeloaders, a/k/a my children, back to school in one piece. 

 

The thing is that as I've been less focused on all things BRCA, I've begun to feel so much better.  Not just mentally, but actually physically better.  All of my mysterious aches and pains seem to have gone away. I've been running 10 - 15 miles a week, sleeping well and I have had no panic attacks in quite a while. 

 

I was supposed to go see another specialist a few weeks ago but I canceled at the last minute.  I'm not a slow witted person and at this point I seriously doubt that there was anything new to be heard on this subject.  I may change my mind about that in the future but despite the fact that I really don't like Cancers-R-Us as an institution, I think Dr. Statistics (my "surveillance doctor") is an okay guy, so I decided that I will stick with him and my regular gynecologist, Dr. Lucky, for the time being.

 

I did have another appointment with Dr. Lucky and we talked again at length about the issues.  I genuinely enjoy her outspoken nature and overall wackiness.  As an ordinary gynecologist who spends most of her time delivering babies rather than treating terminally ill cancer patients, she was understandably less alarmist and pushy about the whole oophorectomy deal.  I told her that I was tentatively planning on waiting until I was 45 to have my ovaries out and she was okay with that.  

 

So here is what I plan to do (and not do):

 

1.    I will move forward with a prophylactic mastectomy.  I have begun taking steps to have this done in early 2010, as soon as February, if I can iron out all of the insurance and logistical issues.

 

2.    I am keeping my ovaries for the time being.  I have an appointment for my next ultrasound and CA-125 with Dr. Statistics in December.  I will discuss all of this with Dr. Statistics then.  But assuming that my CA-125 is still very low (my last one was 4) and my ovaries look good, I am not planning on oophorectomy in the near future.

 

So that's it for now. 

 

I will update on the mastectomy process as I get going on this but for now the endless whining about my endless indecision regarding my ovaries will hopefully stop.  

 

I'm just going to have to find something else to whine about.

 

Shouldn't be too difficult : )

 

(Yes, the Angry Mutant actually smiled!) 

Feeling Lucky, Or At Least A Bit Less Unlucky

I have to admit that part of my newly acquired perspective is attributable to my visit with Dr. Lucky Flip-Flops.  I met with her a few days before we left for France and the conversation was rather enlightening.  By way of background, Dr. LFF is technically "my doctor".   She is your bread and butter "babies and yeast infections" kinda ob/gyn.  Although I do not have a long standing relationship with her (I only met her for the first time in July 2008), it was Dr. LFF who originally referred me to CancersRUs for genetic testing.

Just to set the scene for you, Dr. LFF is Chinese and she speaks very rapidly in that clipped monotone that is characteristic of native Cantonese speakers.  That being said, as far as doctors go these days, she is surprisingly laid back.  She never wears a white coat, just her typical floral dresses and the signature flip flops.  Apart from the medical equipment, everything in her office and her examination rooms looks straight out the IKEA children's catalog, right down the Fred Flintstones chairs and the fish shaped collapsible laundry basket.  Dr. LFF is the kind of doctors that patients either love or hate because of her quirky "tell it like it is" bedside manner.  Personally, I like her a lot.

Perhaps this is because she talks a lot like me.

When I told Dr. LFF that my BRCA test was positive, her reaction was  "yeah, okay, so what?  So now you know your risks.  You should be happy.  You made it this far and you're healthy."

Much to my amusement, she was openly pissed at the docs at CRU for not sending my file to her "I don't understand why I refer patient to them and they do not send me consultation notes".  She said that as soon as she gets the notes (which I have already requested) we can sit down and talk again about whether I should have the oophorectomy and what type of HRT I should have if I do have it.  I really did not feel like she was pressuring me in any way to go one way or the other.  But she was unequivocal about the fact that if I did have the surgery, she would recommend that I begin HRT immediately.  She also said that she will talk to the "big boys" over at CRU and run interference for me with them if I feel like they're pushing me around. 

She also offered to do the oophorectomy if I wanted her to.  Despite the fact that there is this dogmatic orthodoxy around the idea that BRCA women can only have their ovaries and tubes removed by a gynecological oncologist (as opposed to an ordinary gynecologist), she told me that it is really a "nothing surgery."   What about the very specific pathology that must to be done on the removed tissue?  Her reply:  "You send it to the lab and mark it for the type of sectioning you want.  What's the big deal?"

There's really no bullshit with her. 

The last noteworthy thing she told me was that if I truly want an independent second opinion about all of this, I need to go to a different city.  In this city, CRU sets the gold standard and casts a long shadow.  All of the doctors here who might be able to help me either work for CRU or were trained by them.   No one in this city will contradict a CRU doctor regarding something like BRCA management.  Although that makes sense to me, I don't really expect a doctor in a different city to tell me anything substantively different.  Although there are some BRCA issues that are a "toss up" (e.g., to HRT or not to HRT), there seems to be widespread medical consensus that a woman like me should have an oophorectomy "upon completion of child bearing" - a medical phrase that makes my blood boil but that for reasons that can entirely fill a separate blog post.  

The only medical expectation that I have now is that I want a doctor who will respect my decisions and try to be supportive within the parameters of those decisions. 

Of course it would help if I actually could make some decisions . . .

But after talking the whole thing over with Dr. LFF, I'm starting to feel a bit closer.

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. . .

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. 

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????