Long story short, I don't have any apparent metastatic disease! That means almost certainly no chemo; just surgery. On October 28, I will have a simple mastectomy on the left side only and immediate reconstruction using what's called the DIEP flap (or, if necessary, the MS-2 TRAM flap) procedure.
Read on, if you want the long story long! (It's pretty long!)
Cancer makes you busy, I'm remembering. Between the follow-up mammogram that led to diagnosis and my last consultation that will happen a week from Monday, I will have had 16 appointments and procedures in five weeks! There's the mammogram, the normal accompanying appointment with my breast surgeon, the biopsy, the first post-diagnosis consultation with my breast surgeon, a chest and abdomen CT, a bone scan, a breast MRI, a brain MRI, a first consultation with the plastic surgeons, two appointments with a social worker (one by phone), a second consultation with the breast surgeon, a second consultation with the plastic surgeon, and pre-op blood work, EKG, and consultation with an anesthesia nurse. Then there's the talking with people and the researching options and the deciding about options and the simple processing of the fact that this is happening. Again. It is a lot.
I have let it become rather all consuming, and I realized the other day that I have been judging myself for that in a way that I did not very often the first time. Some people in my position stick with their schedules, their lives, their routines. Some people have to. Some people find it comforting and others just don't want anyone to know that something this disruptive is going on. I have the opposite reaction. Hold everything! Back up, back off, relax, reevaluate...wait to see what the long-term implications will be.
The waiting between diagnosis and knowing how bad it is or isn't really is the hardest part. Even though I take the idea of having cancer better than some, the time where you're waiting around to find out whether secondary brain cancer will explain your fogginess, forgetfulness, fatigue, recent headaches, and unexplained vertigo is not the easiest. It doesn't help that a cancer diagnosis makes you remember all these little symptoms that didn't add up before--or does it make you reinterpret your memories into a problem that isn't really there? I am at my most paranoid during this lag time.
Managing this, as you can imagine, can be challenging, and I haven't been as adept at it as I was before. (I now take my neurological symptoms, by the way, as largely the result of hormone suppression therapy, possibly some latent chemo effects, along with the usual culprits of diet and dehydration.) Part of the reason I have had to put my life on hold is that my work is intellectual and my mind is distracted. Other ways of keeping busy, physical or mindless entertainments, are easier to handle. Ideally, a lot of time should be spent just finding peace, which also doesn't get work done. And lately, as I said, I've been worried about that more than I should be, thinking that a "stronger person" would be able to focus on work or get more done in a day. I have to remind myself that there are different kinds of strength and that it's also okay not to be strong all the time. Once I told a friend going through her own difficult time the most useful thing I could think of, "There is no right way to deal with something like this," and I have to remember that this applies to me as well. Aren't you ever surprised at how hard it can be to be nice to yourself? So I'm trying to treat myself as I would treat a friend--or how friends treat me! It's usually a much kinder, more forgiving narrative.
To make things more fun, while you're waiting, you have some decisions to make. For me, the first decision was whether to have a unilateral or a bilateral mastectomy. The second decision was whether to have reconstruction and, if so, when and what kind. No small matter, all around.
On the first question, I ultimately decided that I did not want a prophylactic mastectomy--that is, the removal of the right breast for protective reasons, even though there is no apparent disease. My oncologist said that if she were me, she would. Her concern is my age. The longer I live, the bigger my risk of recurrence, and wouldn't I just like to never do this again? My surgeon was less convinced that the statistics mandated the recommendation of a double mastectomy, although women certainly get them and she would do it if that were what I wanted. As someone not apparently genetically predisposed (I've had all the possible genetic testing), my chances of getting cancer on the opposite side are 5.5% in five years and 6.8% in ten years. They keep going up; we don't really know how much.
I thought about it, and I did wonder whether my recurrence had changed my attitude that led me to get a lumpectomy in the first place: I wanted to treat the cancer I had, not the cancer I might have in the future. We see where that got me. And people who deal with patients going through this all the time asked me certain questions to help me decide on my priorities: If you don't get the mastectomy and you do get cancer, will you be upset with yourself? Do you find follow-up imaging extremely stressful? Do you think about recurrence all the time? Is treatment so traumatic you never want to do it again? I had to answer no on all counts. Although recurrence has been difficult, it's not insurmountable, and as I go about my daily life I am not going to be obsessed with it. For me, the thought of the bilateral mastectomy brought about a great sense of loss. I would always wonder whether it was truly necessary. If I need that in the future, I will have had more years with my healthy body parts intact--and who knows what medical advances may have come about by then? Besides, mastectomy doesn't bring your chance of getting breast cancer to zero. It comes down to 1-3%, but it's not zero. That's a lot of body modification without any guarantee. What affects survival rates is the stage of the cancer, so as long as we catch it early--if it happens at all--I should be just fine.
On the second question, I had a nice long conversation with the plastic surgeons about my options, which boil down to implants or this other procedure, where they use fat, skin, and blood supply from elsewhere on your body. I remember learning the first time I went through this that breast implants are secured behind the chest muscles, which I hadn't realized (though it made more sense once I thought about it--put them in front and gravity will take right over!). Also, I remember thinking that using my own tissue seemed more like me than implants, and after learning a lot more about the way each method works, I'm still of that opinion.
Implants have the benefit of requiring a much easier surgery. Right after the mastectomy, they slip a spacer under your pecs and you're done. But the overall process is longer, because you then gradually pump the spacer up with saline, a little each week or so, and when you've gotten where you want to be, you wait at least two months while the tissue relaxes and forgets about it. Then one more quick, outpatient surgery to swap spacer for implant. The devices themselves have come a long way. We have anatomical options now, rather than just the giant M&M shape. Even so, keep in mind the difference between reconstruction and cosmetic implants--in the latter situation, you are primarily bolstering what's already there but for reconstruction there's nothing to soften the profile of the implant. Now they have techniques, though, to feather a bit of your own fat around the top to create a more natural slope. They are much nicer, then, than they used to be. It is still a foreign object, which can lead to trouble including a higher risk of infection. And you will be dealing with one static side and one aging side (unless you decide to get both done, which is possible).
Flap procedures have the benefit of using your own tissue, leaving something that gains and loses weight with you, sags with age--all that glorious stuff. You can use the fat around your lats or your belly. For me, it will be the belly. They cut quite an oval out of you, from hip to hip and from over your belly button to your lower abdomen. Then they chase the blood supply for that tissue down past your abdominal muscles, either by moving muscle out of the way or, if there are several delicate blood vessels instead of a nice strong one, taking a small square of muscle about the size of a postage stamp. Then they rebuild you. It is a much longer upfront investment--adding 4-5 hours to the mastectomy surgery per side and requiring a day in ICU and four to five days in the hospital. The ICU time is so that your blood supply to the new situation can be closely monitored and fixed very quickly if there is a problem. Vascular surgery is, obviously, much more complicated, involving a microscope and everything! It's really quite remarkable that they can even do it. It's more to recover from, but then you are done. And there is the added bonus of a tummy tuck of sorts, although with a big scar usually higher than normal.
Both surgeries require about four weeks of recovery, with the flap procedure just being a bit more painful in the beginning. Afterwards, we'll see if the pathology report tells us anything interesting that we don't already know about this occurrence. I assume, and my surgeon agrees, that there was the kernel of DCIS probably already present a little forward of my first lumpectomy site, which we didn't know was there because we couldn't see it. That has since grown and burst its boundaries; now we know it's there. This does mean that if I had chosen a mastectomy to begin with I wouldn't likely be facing this situation now. I still don't regret my decision to try the lumpectomy, which further supports my decision now to only get the mastectomy on the affected side.
I appreciate every word and email and call and text of support that I have received. I haven't gotten back to everyone, and I'm quite sorry about that. I was touched that you wrote and you will hear from me hopefully sooner rather than later. I am incredibly lucky to know so many wonderful people and to be so loved in this sometimes difficult world.
Be kind to each other, but especially to yourselves!
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