Friday, January 20, 2012

Cold cold cold like an ice cream cone

Just back from my first follow-up with my breast surgeon since surgery. She's the one who does the digging out of all the breast tissue and the sentinel node biopsies, and then steps aside for the plastic surgeon to rebuild you. I have felt a great fondness toward her over the 10+ years I've known her, and she is a surgeon to the stars - an expert in her field and with an unusual amount of humanity for a surgeon. She is special.

But today's visit left me cold. I think it's me, but might be a little her fault, too. First off, I felt something akin to mild panic as I made my way to suite 9A again . . . the last time I was there was when my dear Dr. Y. told me and DI that he was a mastectomy advocate. And the time before that was our 5 hour, one room ordeal. I had to rush like a madwoman to make it there for my appointment early this a.m., only to wait over 1/2 hour for the doc today. My blood pressure and my ire were up already, going in.

Then she arrives to do the exam. She doesn't remember "the rash," and passes the buck to anesthesiology to get a copy of the inter-op report over the the allergists, and then proceeds to tell me that things look, "really, pretty OK" and that "if you prop them both up into a bra, well, I bet you can't see any difference." And although, yes, I know that I am not the proud owner of a perfectly matched set of breasts (thank you, Cancer Round I), hearing your surgeon say something like this is stinging. Guess what? I'm not going to be in the book she shows to women contemplating this surgery. I'm only an "OK" outcome, cosmetically.

Whatev. Moving on. Not new news. Topless dancing career is over, anyway. I tie my Johnny back up and she sits down to debrief me on the plan going forward. 1% chance of recurrence. No screening at all, ever again. That's right. She says no mammos, no MRIs. Ever, ever again. All the breast tissue that remains in me has been pushed forward to the surface - it's what makes up the wafer-thin envelope she left behind that encapsulates my implants. So if something's there, she says, I'll feel it. Like a "mosquito bite" that "won't go away" she says.

OK, that's nice. But I've had 2 cancers, one very serious one, that were never palpable. And that 1% she's quoting is for DCIS patients, and my first cancer was a crazy invasive wild-woman. Maybe my risk of mets is the same from that, but now I'm down to 1% because I've had the amputations? I'm waiting to check in with Dr. Y. on this one. I see him in a couple of months.

So I'll follow-up with her in a year, because "breasts are dynamic" - and although I know she means "changeable" and that's what my PT has told me, too, I smile inside to think of my super-hero implants and how now only do I have a dynamic personality, but dynamic tits. Yeah!

But then there's this - "down the road," she says, "we may need to replace your implants." "You have a pretty good life expectancy," she went on, and I'm thinking "Pretty good? Why not excellent?" And she goes on to explain how they "might, at some point," need to swap out implants. I replied, "Well, I should HOPE I'll need them replaced as they've only got a 10-15 year life-span and I hope to be at least 80 before I kick the bucket." And she said "We have no idea how long they'll last," implying that they might last my lifetime. What the what?? Maybe I'll get lucky and get 20 years out of these things, but freak, I'm 42, can you IMAGINE that these'll last for 40-some-odd years? I've never heard such a thing, even from the rose-colored-glasses-wearing implant manufacturers themselves. I think that's just plain dreaming.

And that was it. Schedule a follow-up with her in a year, seeyalaterbye.

And yet again, I came out of there with mixed feelings:

  1. Excited, because I don't have to have any more routine screenings if I don't want to;
  2. Pissed, because I feel that some of her information was inaccurate, and if I were not a woman who researched things to death, off I'd go hoping that I'd have these water sacs in my chest for life, and thus be woefully disappointed when, in 10-15 years, I have flat boobs;
  3. A little sad, because I've gone through all this and ended up with less than spectacular foobs; and
  4. Set adrift.
You are reading the words of a 42-year-old woman who currently sees no fewer than 9, yes 9 doctors regularly. And who, until recently, has gotten a mammogram annually, and MRIs EVERY SIX MONTHS. So if you do the math, I've been seeing some sort of medical professional or having some test (or both, sometimes 3 or more in a month) EVERY SINGLE MONTH OF EVERY SINGLE YEAR FOR THE LAST 10 YEARS. So while I applaud the gains in free time and the reduction in my consumption of contrast dye, I still feel a little like I went through a revolving door too fast and got spit out the other side. I don't quite know where I am right now.

I'll find my way, I always do. And chatting w/Dr. Y. about real recurrence numbers and whether MRIs might really be helpful will put my mind at ease. But I guess what this a.m. did was pull me back by the collar a little . . . to say "Hey! Your head's not all wrapped neatly around this latest episode yet." It's a reminder that I'm fresh out of the box, still. A newly-minted "two-time survivor."

And that I don't know what this means, yet.




  1. Sarah, so sorry the appointment was like that. I found her so amazing at the beginning as you did. But then when I was finished it was a feeling like a divorce, almost like "I don't want you any more" as she cast me aside to the nurse practitioner.

    I have to say that doctors like these need to modify their exit strategy with a patient so you don't end up feeling cast away and adrift.

  2. Oh, I'm sorry, Sarah. You do such a great job explaining the way this has made you feel that I feel like I really know. Like Jennifer said, something has to change, so women aren't just thrown out on the other side. I hope little things like friends, pilates, chocolate almonds, Marmalade, yummy dinners, and writing can help you feel a bit more grounded until all of this "stuff" stops swirling around so much. Love you. Hugs to you.

  3. Ah... the free fall... I had my post-op back in October with my BS - she barely looked at me and said she would be out on Maternity leave and to come back in March. It is amazing how you just get this feeling they are "done" with you... These people who have held your very life and future in their hands - work is done... on you go. Best of Luck . Bon Voyage.
    I had lots of questions about future with my BS too when I saw her - and there was a lot of "WELLLLLLLL... can't really say for sure. Nothing is guaranteed.... and well - you have had it twice..."
    All you can do is live in the comfort of you have done everything possible to kick cancer's ass and keep it from coming back. (I think you said those words to me at some point in the last few months).
    They are good words.
    I am sorry about that experience today - it sucks and there's nothing good about that. But there are WONDERFUL things about where you are and what you have overcome - and what you have left to do in this world.
    So - shake it off and Go Get Em! I am right behind you - as usual :)
    Love you sister - Tina

  4. Sarah,

    Remember that awful period when treatment ended after the first time? I found that there was a similar period after the second time...but it's different too...maybe because we know more. You know how the onco docs feel about MRIs. If you want one you'll probably have to advocate for it yourself. Objectively, maybe you want to get a 2nd opinion on the lifespan of the implants? Maybe from another breast surgeon. Remember, surgeons as a general rule are not the most touchy feely folks. I really liked Peggy Duggan (quite empathetic for a surgeon) at the Faulkner...she might be a good 2nd opinion surgeon for you. And don't beat yourself up too much...give yourself some time to get used to your new normal...or should I say, your NEW new normal. You have many friends and we are all behind you. Don't forget about treats...sounds like you need one just about now. Retail Therapy always makes you feel better!

  5. Sarah,

    Remember that awful, twist in the wind, time post treatment the first time? I felt like that after the second time too but it was a little different, probably because I knew too much.

    You know how onco docs feel about MRIs. If you want them you'll probably have to advocate for them. Perhaps you want to see another breast surgeon regarding their view on implant lifespans? I really liked Peggy Duggan at the Faulkner (surprisingly empathetic for a surgeon).

    Hang in there sister. Give yourself some time to get used to your NEW new normal. And don't forget about treats...retail therapy works wonders.

  6. Hey Sarah - great post. It all just seems so anti-climactic, doesn't it? I understand and can relate to all of your feelings, which you express so eloquently. Yep, I have no doubt you will adjust and wrap your head around it all. However it is indeed a process, you can't just jump to everything feeling all "normal" again...b/c it never really will be all "normal" again. Sometimes I look back at my pictures of myself "BC" (before cancer) and think "Wow, I had no idea what was coming, I was so blissfully unaware and happy". I'd love to recapture that innocence. Breast cancer takes that innocence away. Here's to learning how to function and deal with the "new normal." Right there with you. :-)