BRCA Surgeries: Off to see the Wizard(s)

We’re off to see the wizard…

8/27/2012 9:00 AM. In a couple of hours I see the plastic surgeon. Five weeks after my last surgical foray it is apparent my old friend and troublemaker, left boob, is settling into a less than desirable place. Compared to the initial reconstruction back in January, the cosmetics are much improved. How much is good enough? Where does one stop with the business of plastic surgery in this age of perfection?

Last week I saw my breast surgeon for the first time since bilateral mastectomy in January. He’s a delightful fellow with a boatload of surgical experience in treating breast cancer. While cosmetic problems are not his specialty he did at least ask about the obvious asymmetry. It was clear he did not want to focus on how the new ta-ta’s looked. He spent more time marveling over the fact that when my ovaries and tubes were removed they were able to use my new bellybutton and the previous abdominal incision to do their laparoscopic magic.

My guess is the plastic surgeon will recommend Surgery #7 in October for those who are counting. Probably more oh-so-painful fat grafting. Who knows what else. And it means waiting another couple of months for things to settle if I want nipple reconstruction. Sigh. While I’m grateful for good insurance and a loving spouse who is fine with whatever I decide, it does not make this BRCA management business any easier.

So, it is off to see the wizard and discuss the options. Again.

8/27/2012 2:00 PM

The two docs on my plastic surgery tag team that did my initial reconstruction weighed in on how I’m doing and gave me a range of options for what comes next. It was a pleasant surprise to see them both during this visit.

First up was Dr. Sunshine. Warm, friendly and always upbeat, she wore a royal blue dress and black pumps. Sunshine exploded into the room and gave me a big hug. She wanted to know how I was doing after all this surgery. I could tell from the way she framed the question she was just as interested in my emotional well being as my physical state. We chatted like old friends.

Next came Dr. Engineer. This brilliant woman started her career in engineering and returned to school to become a doctor. I spent ten years working cheek and jowl with engineers and I can see she is at heart, one of that clan. Reserved, precise and analytical, her skill set compliments the effusive Dr. Sunshine. The engineer is all business with her lab coat, sensible shoes and greying hair. We had a focused discussion about options, timing, risks and benefits.

Neither doctor tried to sell me on anything and I appreciate this. As with all these BRCA surgeries, it is my job as the patient to make the tough decisions. It all boils down to how I feel about the way my body looks and functions.

What I learned today is it that five weeks post-fat grafting is too soon to tell what percentage of the graft will remain. The body typically reabsorbs about half of the new fat. The fact that I still have a good-sized concave spot where nice jiggly girl flesh should be is a good indication that another round of fat grafting would make that spot look a whole lot better. In addition, the contour would improve with repositioning the breast mound. In other words, they’d keep lefty from hanging out in my armpit by moving it closer to the midline of my chest.

So, my choices are as follows:

A: Do nothing and be done with it.

B: Forgo anymore revisions to the breasts and get some new nipples in late October after everything is back to normal.

C: Have a revision surgery in late October and wait a couple of months. If all goes well, get new nipples just before the end of the year. I’ve hit the cap on my out-of-pocket for insurance in 2012. If I wait until next year those nips will cost a whole lot more.

Money is only one of many considerations here. More importantly I have to weigh the pain and inconvenience of yet another revision surgery. More liposuction (damn that hurts) and another two weeks locked up in Spanx is not a pleasant thought, but when I think about the boobs I have to exist with for the rest of my life, it is a minor pain in the ass. Or a minor pain in the thighs or wherever Sunshine and the Engineer decide to steal fat from.

What did I pick? I chose to schedule a revision for October and reserve the right to change my mind. I might just call it good and get some new nips. This way I have time to continue pondering the choice as this banged up body heals. It is one of the simpler decisions I’ve had to make in the last year but it’s still is not easy. Ask anyone who’s hiked the BRCA surgery trail. There’s no right or wrong, better or worse. It’s all very personal. I wonder where I put my ruby slippers?

Farewell to Summer

The calendar says there are another four weeks left until the start of the fall season, but I beg to differ. Summer has departed. The sunlight has changed in intensity and duration. Cooler temperatures have arrived. This morning the heat came on in our house. If you live in the Pacific Northwest, it is time to get out and enjoy these last precious golden days before the rainy gray arrives.

It’s been an odd summer. Yet another rough patch in a rather dreadful year in the Asbell household. It began last autumn with BRCA1 test results, continued with the death of my father-in-law five days before Christmas and then came the January surgical hell followed by the July surgery purgatory. In between more dreadful cancer crap happened to members of my family and to friends. Still, there were some delightful experiences and special moments. This is the way life works.

At the start of summer in blistering heat, I watched my youngest niece graduate from high school.

My beautiful nieces and great-niece celebrating graduation day.

The bookend to summer came two weeks after surgery #6 for this year. I sat with old friends poolside, sipped fine wine and supped on grilled steak. While he sampled a 1996 Turley Black Sears Zin, Jim decided the Black Sears vineyard would be a fitting place to spread his ashes when he’s gone. This led to a lively talk about the kind of stuff that only old geezers discuss, namely death and bucket lists. Morose? No way. It was funny and revealing. I continue to learn things about old friends, my husband and myself. And where did the group decide that my ashes should go? Autzen Stadium. Yes, that’s right. I will be one with my Ducks football team. They were kidding, of course. Then again…why not? Summer is over rated. I love autumn. GO DUCKS!!!

Hot summer night pool party.

 

 

Breast Cancer Early Detection: From the Minds of Babes

Just when you think nothing really changes in the breast cancer world something marvelous happens.

Did you hear about 17-year-old Britteny Wegner who recently won the top prize in Google’s Science Fair? She taught a computer to do something that will speed breast cancer diagnoses using the most minimally invasive biopsy technique: Fine Needle Aspiration.

Why is this nifty bit of computer code writing so spectacular?

In 1998 when I found a big lump in my left breast I hightailed into my primary care doctor’s office. I’d wanted to see my OB-GYN but his crappy office staff would not give me an appointment sooner than 2 weeks out. When I saw my PCP the next day he performed a fine needle aspiration right there in the office and it was no big deal. A tiny needle just sucked a few cells from several spots in the lump and off to the lab it went.

The results came back inconclusive, a common finding. The PCP sent me to the surgeon for a consult where I had yet another fine needle aspiration. I also had my first mammogram and an ultrasound. Once again, the results were inconclusive. The surgeon gave me a choice. Wait, watch and repeat the testing in 3 months or have a more invasive procedure called an Excisional Biopsy. I made my choice purely based on a gut feeling. A few weeks later they cut out the lump and scooted it down to the pathologist while I was still on the table.

“You have breast cancer,” said the surgeon.

All I could manage to say was “oh, shit” before they knocked me out completely and proceeded to do more snipping to ensure all of the tumor margins were clean.

It took more than 1 month from the time I had the first fine needle aspiration until diagnosis. The following week I had to return for another surgery. Axillary node dissection. Remember folks this was 1998 and sentinel node biopsy was still not the standard of care. Had Ms. Britteny Wegner’s computer program been available, not only would I have had a quicker diagnosis, I’d have had fewer biopsies and surgical procedures.

Fine needle aspiration is cheap, easy and quick. The program that analyzes tissue samples, designed by this high school girl, is 99.1% accurate and as the data set continues to grow, the accuracy improves. With tweaks to the code, other types of cancer identification improvements may also be possible.

Congrats to Britteny. I hope she uses the $50,000 college scholarship to continue her work. We need more kids like this one.

Brittney Wegner – Google Science Fair winner

Source:

http://www.nbcnews.com/technology/futureoftech/17-year-old-girl-builds-artificial-brain-detect-breast-cancer-908308

 

 

 

OK, so this has nothing to do with my usual topics. The author Harry Harrison passed away a few days ago. Here’s a great blog post about a story he wrote with my Dad, Hubert Pritchard, in the late 50’s.

Harry Harrison News Blog

Here’s a tasteful little story, which Harry Harrison has occasionally referred to in interviews, using the title ‘I Ate a Pygmy.’ This ‘true’ adventure was made up by HH and collaborator Hubert Pritchard, and the accompanying photograph – not for the squeamish! – was also faked by the two of them. The human arm was modelled in clay by Pritchard, I think, and the photograph was taken by HH, who carefully adjusted the focus so that the image was slightly blurred. The arm was then covered with a ten cent can of stew, which Harrison and Pritchard were intending to eat once the photoshoot was completed – but the image they created was so revolting that they lost their appetites for stew!

The Unholiest Banquet
by ‘Hugh Fitzpatrick’ [Harry Harrison & Hubert Pritchard] (1958)

real-men-may-1958-unholiest-banquest-s.jpg

My heart hammered a loud echo in my ears as George knocked on the front door. We were…

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BRCA Surgeries: Stage II Post Op at 4 Weeks

Miles and Jack in Sideways.

Good Stuff:

Bruises nearly gone everywhere. Pain level merely an occasional annoyance. Routine activities like wrangling cats for claw clipping almost normal. More energy. Able to slither into favorite pair of skinny jeans this morning although swelling is still there throughout the midsection.

Turds:

Spitting a stitch is the expression for those naughty sutures that poke through the skin instead of dissolving inside like they are supposed to do. This was highly irritating (literally and figuratively) with my last surgery. Now I’m a freaking expert at rooting these out and snipping the little buggers. Scars are a mixed bag with improvements in some areas and one section that only Dr. Frankenstein could love. Left boob appears to be settling back into the armpit area. Boo hiss. Both breasts definitely smaller, which is okay with me, but I had hoped they’d be perkier. I keep in mind that that the left boob will always play the radiation wild card and will do whatever it wants no matter what the surgeon does.

Other Stuff:

In one of my favorite wine movies, Sideways, Jack squawks at his depressed friend Miles that he does not want to hear anymore of his “naghead downer bullshit.” Now that the worst of this is over I tell myself to quit feeling sorry for myself and to cease procrastinating. I have not written anything other than this blog for many months. I trotted out my new novel, another murder mystery, and read through all of it this morning. Instead of the tattered mess I believed was there, parts of it were really quite good. I am my own worst critic and need to quell that naghead downer bullshit refrain that often runs through my head. Time for me to get back to work.

Breast Cancer 2020 Deadline is Drivel

In 1948 at the age of 1, a baby boy named Jimmy in Southern California contracted polio. The highly contagious virus was passed to him unknowingly by his father. The polio epidemic was rapidly brought under control with the introduction of two vaccines, beginning in 1955. It was too late for little Jimmy to escape the crippling effects of the disease, but he survived and went on to live a full, productive life. As that same Jimmy’s wife, I have come to know polio almost as well as my own nemesis, breast cancer. Every time I hear the National Breast Cancer Coalition’s push for a deadline to end breast cancer, comparing it to the fight against polio, it ticks me off.  Breast Cancer and Polio are apples and oranges. The NBCC 2020 Deadline is a lousy public relations campaign based on oversimplifications and a short-sighted attitude.

Jim (right) and his brother Gene circa 1950.

Most of the time I applaud and support the efforts of all organizations that work on the wide range of issues surrounding cancer prevention and treatment. Even when giants like Komen do incredibly stupid things like their 2011 attempt to de-fund Planned Parenthood, I look at the big picture and believe in general, Komen and others like them have done far more good than harm. I have no beef with the National Breast Cancer Coalition’s current push to lobby the politicos for changes in the entrenched systems that fund breast cancer research. What I oppose is their tactics and message.

Let’s get in the Way Back Machine and return to the 1950’s for a moment. By the time polio hit the peak of it’s mid-century grip on American kiddies, it had been described in the medical literature since 1789. The virus was isolated and classified in 1909 into three strains. In 1938 what is now the March of Dimes was established to help combat the ravages of the disease and fund research. The stunning, rapid success in the hunt for the polio vaccine is one of the greatest scientific accomplishments of the modern era. But it did not happen overnight and it has not been eradicated as the Breast Cancer 2020 folks claim. Polio is still with us in parts of the undeveloped world.

In terms of it’s complexity, fighting the polio virus was not nearly the task science faced against another modern viral dilemma: AIDS. Is there an AIDS vaccine that works as well as the polio vaccine? Not yet. Still, huge leaps have been made in battling AIDS. In both the case of AIDS and polio, dramatic progress was made in slowing a worldwide disease through the use of vaccines or combinations of medications.

Why don’t we have a vaccine for breast cancer yet asks the Breast Cancer 2020 campaign? They claim it is because we don’t have a focused deadline, a meaningful goal that drives all efforts. I say that is hogwash. Cancer is not a virus. Cancer is not a germy little critter that invades cells and goes nuts. Cancer is the proverbial 800-pound gorilla that can arise in any cell of the body due to tiny changes in each individual’s unique genetic code. What triggers these changes and controls tumor growth is at the very heart of biology and evolution itself. Cancer compared to a virus is like the difference between a jet airplane and a paper airplane.

The National Breast Cancer Coalition’s 2020 campaign reminds me of a little kid who stomps his feet and screams “I want it now.” The NBCC’s temper tantrum will pass and breast cancer will still be with us in 2020. So will new drugs, more targeted therapies and greater knowledge. It used to be that childhood leukemia killed the vast majority of kids who became afflicted. Today, it is just the opposite. Most kids survive and thrive. That is real progress.

Jim (left) with his sister-in-law and brother Gene in Bilbao, Spain 2011.

 

Ovarian Cancer: Olympic Champ and the Silent Killer

There is a reason ovarian cancer is called the silent killer. Symptoms don’t appear or are so subtle that diagnosis does not occur until this cancer is advanced and difficult to treat. Early detection tests simply do not exist. Pelvic ultrasound and the blood test for CA-125 are the standard offerings, but they fall so far short of the mark it is pathetic. Research dollars and treatment advances for ovarian cancer lag behind breast cancer, the far more sexy female cancer. As a society we care more about our cleavage than our pelvic organs.

For those with defective BRCA genes, the threat of both breast and ovarian cancer is high. As I’ve been recovering from surgery to reduce my risk of ovarian cancer I’ve been glued to the TV coverage of the Olympics. I’m guilty of watching sports I did not know even existed, but always look forward to the big ones like women’s gymnastics. As I watched the US team take the gold, and then Gabby Douglas win the individual all-around gold, I thought about many of these fearless young women I’ve admired over the years. One such Olympian, Shannon Miller, was a member of the 1996 team dubbed the Magnificent Seven. What you may not know about her is she became an ovarian cancer survivor in 2011.

 

Olympic gymnast Shannon Miller in 1996

If you’d like to read more about Shannon Miller’s experiences please take a few minutes to read this short interview and remember – ovarian cancer can happen to any female, whether they are couch potatoes or the stuff of Olympic legend.

Shannon Miller and her son during treatment in 2011.