Wednesday, May 20, 2009

Tit for Tat

Come on, I had to use that post title eventually ;)

Okay, so we have a tie! 2 surgeons say mastectomy, 2 say breast conservation and the 5th doc that was to be the hoped for tiebreaker says…drum roll please -- I can have either one!

By the time I got to the fifth (and last) oncological surgeon today I was already armed with lots of knowledge, a list of pertinent questions, and have become an old hand at the whole consult thing…and granted that may have been part of what made the visit go so smoothly. But I have to say I also liked her. She was friendly and easy to talk to and seemed to understand all my questions and not pass judgment on personal stuff like breastfeeding. She also was willing to give me objective data on my choices. She will do either surgery I want, with one caveat – she said “they” (and I’m assuming she means that hospital) will not do nipple sparing mastectomies -- something I have discovered in my research and want to know more about.

(Perhaps this post should have been titled, “How many times can Kayleigh use the word nipple?”)

See here’s how I see it in my ignorant laywoman’s mind:

Clearly one of my options is to have breast conservation that leaves me my own nipple essentially intact, perhaps with a significantly reduced breast size & deformed areola.

On the other side of the coin the kind of mastectomy I am a candidate for is what they call a skin sparing mastectomy, where they basically leave my entire breast intact on the outside and just take out all the bad stuff inside plus remove my nipple/areola. (what they put back in to make me a breast will be the subject of another post, but suffice is to say I might get a tummy tuck out of this deal!)

So then why can’t I have a nipple-sparing mastectomy as well, which seems to me to amount to the best of both those worlds? I mean, really…I just want my cancer gone, a normal sized breast, and my own nipple, which will hopefully still work, (and I mean in that special fun way)…is that so much to ask???

Okay, well, it may be, yes, lol. And to even have the possibility of asking questions like this is pretty freakin’ amazing considering a couple weeks ago I was vacillating between either planning my funeral in my head or imagining myself as some sort of one-breasted Amazon warrior.

But I digress.

In my research thus far the explanation for why they didn't do nipple-sparing mastectomies in the past was concern about microscopic cancer cells being present there since most cancer is ductal and all ducts lead to the nipple. The reason that isn’t a concern in breast conservation surgery is because they zap what’s left of your breast with radiation to kill those nasty little buggers just in case. However, with a mastectomy typically there’s no radiation, thus any stray little mutant cells left behind in a nipple could theoretically slip by and cause trouble later on.

But in recent years more and more nipple sparing mastectomies are being done because it's thought that the original concern over that area being more prone to cancer cells was exaggerated. Plus I've also read that they can actually zap the nipple & areola with radiation for a nipple sparing mastectomy just in case – and even can do so during the actually surgery!

In any case, clearly people are offering to leave me my nipple in breast conservation, so I need strong convincing arguments as to why not so with mastectomy before I can make my decision. I also feel like there are perhaps policies…formulas being used to determine what can and can’t be done rather than taking things on an individual health basis. The wheels of medical progress can move slow…I’m just trying not to get run over by them.

BOTTOM LINE:

If I choose to keep my nipple I need to know what cosmetic realities I will have to accept for my breast in order to do so, and if I choose a mastectomy where my nipple is taken forever and replaced with a replicated facsimile I want to know that it wasn’t possible to save it.

So, my quest is not quite done yet.

I am seeing two plastic surgeons, one tomorrow and one next Thursday. I am hoping they can answer my questions about the final cosmetic outcome, complete with pictures of their previous work.

In the meantime I do feel pretty well armed with knowledge about my health prospects, which is what’s MOST important. My prognosis is good thus far so I try as much as I can to focus on that, especially for the sake of my little family.

Will update soon as I can…much love and great big fat gobs of gratitude to EVERYONE. Thanks for coming along on this journey, it would have been so much harder without each and every one of you :)

9 comments:

Trace said...

Always thinking of you K. You are certainly well-armed and educated, which is so important. I am still in shock about how answers/treatments can differ so much from doctor to doctor. I would have never guessed. Your strength and determination is clearly evident in your posts, you are AMAZING!!

Anonymous said...

I have been following your blog as a lurker, since before your diagnosis. A little background about me - My mother is a 20-year breast cancer survivor (same cancer as yours; she had a masectomy no chemo or radiation and no reconstuction either, per her choice). My grandmother also had breast cancer but much later in life (in her 80s) and that didn't kill her. My brother at 45 last year battled an aggressive case of prostate cancer (which is related to breast cancer).

I am 43 and when nursing my now-14 year old, I found a lump that was solid and had (after many months of "watch and see") to ultimately be removed. It turned out to be benign, but you can probably imagine the emotional period I went through until we knew that. I have ever since had yearly mammograms and so far, so good!

First, I have been wanting to say this to you: your son probably saved your life! If you hadn't been breastfeeding, you may have not discovered these lumps until much later. So give that kid a huge kiss!

As for your decision - it is completely up to you. You are well researched and I can totally relate to that - I did and would do the exact same thing. Ultimately you have to go with your gut instinct. Perhaps take off the long weekend and listen to your heart?

But, if it were me (and you are not me, of course!), I would go for the masectomy and not worry about the nipple. Reasons: you have two nipples. That other one will give you just as much fun. And if it were me, I'd figure that I would attack it aggressively so then I would not have to go through the rest of my life worrying and obsessing too much about it returning again.

But that is me. You know YOU best!

I will be watching and praying for you and hoping for the best possible outcome.

And - thank you for sharing this with us.

Sheila said...

You sound much more confident, Kayleigh! It's amazing what some knowledge will do, isn't it?

Thinking of you and sending you good vibes, as always!

Sheila

Steph H said...

One of the best pieces of advice I was offered for dealing with surgeons is this: don't go in and ask what they do, go in and tell them what you want. You may not get everything on your wish list, but when you start from a place of "I want A, B, and C" and you walk out with A and C, it's a lot better than hearing "I don't do A, B, or C" from your doctor.

But, of course, as a previvor, I have a more leeway in my decisions (but let me tell you -- having more choices isn't always a good thing!). The most important question you should ask is: what surgery will give me the best outcome for survival and least risk of recurrence.

As far as I can tell, my friends in the BRCA community who have had cancer and mastectomies, nipple-sparing wasn't an option for them. (It is for me, only because I'm pre-cancer and nipple-sparing is the trend right now -- it wasn't even eighteen months ago, and who knows what the consensus will be two years from now.) The aesthetic results they can achieve with breast surgeries and nipple reconstruction are astonishing. You will feel better after you have seen photographs of paitents like you. And don't forget to ask your doctors for names and phone numbers so you can talk to former patients who were in your similar position. Are they happy with the recon? Do they wish they had done something different?

Good luck with your decisions. And keep it up with the boob puns! It's one of the priveleges we earn ;)

Anonymous said...

You are doing all the right things to determine what is best for you and your case. I am happy to know that you were given the choices that every woman deserves to have before they make their decision on surgery. When possible, saving skin and nipples, saves not only lives, but enhances the quality of that life after cancer for women. www.breastpresevationfoundation.org
advocates for all women - and I am glad the word is getting out there to the surgeons!! All the best to you and thank you for sharing your story with us. You are a brave example for all of us. Thank you.

Brenda said...

I think its great that you are getting so much information. Then when you make the decision, you will know its yours.

As I am going through all of this, I am finding that they don't have ONE right answer for anything, there are lots of options and we all tolerate different things.

For me, breast conservation is important, so I allowed my treatment to be tailored towards that.

So do what you feel best about and then don't look back.

notSupermum said...

Sorry I'm late with my comment - my pc is ill and is being attended to by the local IT doctor (my little brother).

I'm using the Teenager-in-waiting's laptop to catch up on some blog reading.

K, you are doing all the right things, getting as much info as you can etc. That's got to be a good thing. On a very personal note, when i was in my 20s I had an abscess removed from one breast and it was taken out through the nipple. As a result I don't have any feeling in that one, not ideal but it has never cramped my style if you catch my drift....nudge nudge, say no more ;-)

God I don't believe I've just written that on a public blog!

Thinking of you, stay strong. Check your emails :-)

Weronika said...

Kayleigh, please know that you are in my thoughts and prayers every single day.

I'm amazed at your persistence at making the decision most beneficial for you (in every single way). My aunt let the doctors decide everything for her. You are fabulously strong.

Stay strong and I hope you have a great weekend.

Mervat said...

Dear Kayleigh, you have chpoice and that is empowering, especially when you have had so many doctor's probe and enquire inot every aspect of your life. Because you have such an even spread of options then use that knowledge and go with your gut instinct.

My thoughts, as always are with you.

xxoo