Tag Archives: lumpectomy

Boob Book Progress

Despite a generally frenetic work, medical, and social schedule (last week something took me out of the house every single day!) and despite the start of a new Eng. 102 section, I’ve managed to make a fair amount of progress on each of the book projects in hand.

One of the appendices for the Boob Book, “How to Read a Scientific Paper,” is finished. With that and the introduction in hand, now all I need to do is write one reasonably substantial chapter and a prospectus, and I’ll be ready to start peddling the thing.

Which chapter remains to be seen. In the order of the draft chapter outline, the first chapter discusses DCIS vs. actual invasive cancer. The next goes into the considerations a woman needs to make when faced with the question of whether to do a lumpectomy (or repeated lumpectomies, which occur in about 48% of cases) or to elect a mastectomy.

However, in the chapter outline as it stands, the book does not go into the controversies over mammography and screening. This is pretty fierce stuff, and when you look hard at it, pretty disturbing. Because the push to screen all women — some circles would like to see girls having mammograms shortly after their first menstrual period — is so ubiquitously advertised, so harmful to so many women, and so controversial, I wonder if I should include some discussion of it.

I didn’t put that subject into the original draft outline because one of the book’s underlying assumptions is that the reader already has a diagnosis, and so the question of whether to subject herself to repeated mammograms is moot. The book is intended as a tool for women who have to cope with an existing diagnosis of DCIS or early-stage invasive breast cancer. So the whole pink ribbon flap is really beside the point.

What I’ve got as my first chapter is hardly the stuff of television documentaries. However, the chapter on reconstruction certainly is. If I skipped over the first several chapters and went straight to the one on deciding whether or not to have reconstruction, that would get an editor’s attention.

I have some seriously controversial things to say on the subject, which parallel Gayle Sulik’s observations about the money motives behind the pink ribbon movement. My line of thinking focuses on the profit centers that drive the pressure put on women to agree to implants and major surgery to create fake breasts.

It probably would make sense to do that: cut to the liveliest controversy. The table of contents will make the rest of the book’s direction clear.

There’s a lot of material here. I just need to get to work on it!

Research Blues…

Here we are, on the way to writing the Boob Book, swimming through dense swamps of academic research by way of compiling something to say and maybe even getting it right. Each new research report and serious news report points me in the direction of some other paper I really ought to read. The pile of print-outs now numbers about 800 pages…and counting.

Plowing through all this material, reading it carefully, and annotating it, I’ve reached page 701 and probably will get through another 50 pages today. But of course…this morning I stumbled across this little gem:

Rastelli, Antonella L., Marie E. Taylor, Feng Gao, Reina Armamento-Villareal, Shohreh Jamalabadi-Majidi, Nicola Napoli, and Matthew J. Ellis. “Vitamin D and Aromatase Inhibitor-Induced Musculoskeletal Symptoms (AIMSS): A Phase II, Double-Blind, Placebo-Controlled, Randomized Trial.” Breast Cancer Research and Treatment 129, no. 1 (August 2011): 107-116. doi 10.1007/s10549-011-1644-6.

Damn! A randomized study on a BIG topic and the thing is dated 2011! How the hell could I have missed this?

WhatEVER. I’ve got my sticky little hands on it now and will be reading it within the next day or two.

As dry as it sounds, I’m finding this stuff extremely interesting. It’s so fascinating, as a matter of fact, that once I’m launched on a study session, it can be difficult to tear myself away from it.

And it makes me regret that I was born 40 years too soon. I always loved the sciences and, as a little girl, craved to grow up to become an astrophysicist. Over time I came to find the life sciences more interesting. But come the 1960s, when I entered college, neither field was, shall we say, welcoming to female students. Oh well.

In any event, the project feels a lot like writing the dissertation, only considerably more engaging.

Reading the research on breast cancer, DCIS, breast cancer treatments, and the breast cancer industry can be surprisingly disturbing, too. I’ve found it’s wise to limit the number of hours spent working on this stuff to about four a day — otherwise, it can really ramp up the stress level.

As an example… One of the most startling revelations this little project has uncovered has been the very negative effects radiation therapy has when applied after the “immediate reconstruction” procedure that is widely hawked to women who have mastectomies. “Immediate reconstruction” entails inserting a saline or silicone implant under the chest muscles during the same surgery that removes the diseased breast.

If the woman has an invasive cancer, then even after a mastectomy she will be subjected to radiation treatment. (Many women who do not have invasive cancer end up with mastectomies: a large enough DCIS will do the trick, as well the presence of a mutated gene that hikes up your chance of developing breast cancer as high as 70%). But radiotherapy hugely increases complication rates when it’s done after cosmetic surgery (which is what “reconstruction” is, boys and girls). The unsightly and often painful results can lead to repeated new surgeries and extended misery.

Overall, if you think you’ll need radiation therapy — or if there’s even a chance that you will — you’re better off to wait on the reconstruction until after the radiotherapy is done.

I came across images illustrating said stark fact in a review of recent research, what we humanities PhD’s would call a “survey of the literature”:

Rozen, Warren M. and Mark W. Ashton. “Radiotherapy and Breast Reconstruction: Oncology, Cosmesis and Complications.” Gland Surgery 1, no. 2 (August 2013): n.p. http://www.glandsurgery.org/article/view/662/712.

Doctors don’t tell you this when they propose that you should undergo a mastectomy. When mine first suggested that she felt getting rid of the boob was the best course of action, in the same breath she said “but we can do an immediate reconstruction while you’re on the table.” As though everything would then be said and done.

Well. Not quite.

Nor was I told, during the eight months or so that we attempted to excise the criminal DCIS from my dainty little boob, that the radiotherapy they intended to subject me to after the lumpectomy could cause the scar to contract and hideously deform the breast they were trying so valiantly to save.

Actually, I was given a choice between going with lumpectomy, radiation, and aromatase inhibitors or having a mastectomy and being done with the whole effing ordeal. WonderSurgeon indeed had managed to excise the entity to fit the 2014 ASTRO/SSO guidelines. These say that “no ink on tumor” suffices and that wider margins of tumor-free tissue make no difference in survival rates. But she wasn’t buying the new guidelines and felt strongly that the better part of valor resides in wider margins.

Being the incurable skeptic that I am, every time the woman opened her mouth I resorted to my research tools. And yea verily: I easily found research studies that were just freaking NOT THAT OLD suggesting — convincingly! — that wider margins = better results.

After learning what radiotherapy can do to a gifted surgeon’s work of art, I am so glad we elected to go ahead with mastectomy. And…after learning how much can go awry with “reconstruction” — and how often — I’m also mighty glad I elected to go flat.

Even though I was assured that a mastectomy would mean no radiotherapy and no hormone therapy, something else was left unsaid: Naturally, the excised boob would be carefully studied by a pathologist, and if any invasive cancer showed up after all, none of the above would apply.

Obviously, it would be good if the Writer never had a dog in this particular fight. When you’re this close to it, reading the research surely can raise your blood pressure.

But…having lived the application of all that research, I’ll have plenty to say about it and what I have to say should be pretty lively. This is going to be a great book. Good reporters by their nature have high blood pressure. 😉