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My final answer March 15, 2014

Posted by Judy in Musings.
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“I’d like a bilateral mastectomy with no reconstruction, no lymph node dissection and a port insertion, please.”

“Are you sure about that ma’am?”

“Yes, I’m quite sure.”

“Is that your final answer?”

“Yes, that’s my final answer.”

My final answer. I’ve had 3-4 days to live with my final answer. I’m 100% certain that it’s the correct answer. I’m not certain, however, that I’ve come to terms with the implications of said answer. I still have 4-5 days to come to terms. In the meantime, I thought you might like to know how I got to the final answer.

My trip to Mayo made it quite clear that bilateral mastectomy was the correct choice. The decision to not do reconstruction was made almost at the beginning of this whole process, back in December. I have to say that I don’t like the option of NOT reconstructing, but I REALLY don’t like the reconstruction options available. Basically, reconstruction is not a walk in the park. It’s nothing at all like getting a boob job, not that a boob job is a walk in the park, but it is when compared to reconstruction. When you get implants, you still have a breast, which creates the shape. When you no longer have breasts, simply inserting an implant behind the skin would result in something that looks nothing like a breast. So you have two options:

1) Implants – these are inserted behind the chest wall muscle. Yeah, you read that right . . .BEHIND the muscle. Last time I checked, chest muscles generally are flat and certainly not rounded like a breast. To get that look, you have to strrrrreeeeetch the muscle little by little. (An expander is place behind the muscle and saline is squirted in at regular intervals.) I hear this is quite painful. Once the desired size is reached, the expander is swapped out for implants.

2) Autologous – tissue (including fat, skin, blood vessels and sometimes muscle) is taken from one part of the body and used to create the breast. The two common places to borrow tissue from are the abdomen (Uh, nope, I need my abs to sing, thanks!) and the middle back (That sounds like decreased arm mobility to me, no thanks!).

Neither option is very agreeable to me. Plus, doing reconstruction would guarantee the need for another surgery, thus putting my vocal cords at risk again. If there was a better option, I’d consider it. Since there isn’t, I’m choosing no reconstruction, the lesser of the two evils.

You’ll note that I’m not having a lymph node dissection. In fact, I’m not having any more lymph nodes removed. If you’ll recall, I had three lymph nodes removed and two were “involved” (i.e. had cancer in them). This put me in the “hmmm, there’s no clear cut answer on what to do” category. On the one hand, I could have a complete dissection (all of the nodes removed), which could possibly reduce the risk of metastasis while increasing the risk of developing lymphedema (swelling of the arm due to excess lymph . .. this is not curable). On the other hand, the nodes could be left in place, which would mean lymphedema would be highly unlikely, but there could be an increased risk of metastasis. (As a brief aside: so many times during this process, I’ve been presented with two options and have thought, “Well, both of those options suck. Give me something else, please!” It’s like I have to chose between bad and terrible.) So back to the lymph node issue. The Mayo surgeon and oncologists felt that a complete dissection was necessary while the radiation oncologists thought that was overkill when radiation could take care of any errant cells.

Oh, what’s that? You want to know what my rock star surgeon thinks? I thought you’d be curious! He basically felt caught between a rock and a hard spot. From a medical standpoint, he felt compelled to recommend a complete dissection due to the fact that no studies exist regarding the efficacy of complete dissections on women who have had mastectomies. The studies done on women with lumpectomies showed that there was no difference in survival between those who had complete dissections and those who had sentinel node biopsies (only a few nodes removed). But, you can’t just extrapolate those findings onto another group of patients that don’t fit the criterion. And here’s where the surgeon was stuck. While the studies indicated that he should recommend a complete dissection, common sense didn’t agree with that indication. If it’s okay to leave the lymph nodes in when you are leaving most of the breast tissue, why would it not be okay to do the same when you are removing most of the breast tissue? Do you see the conundrum? Suggest a course of action that doesn’t make sense yet is backed by medical science, or go with the action that has no scientific backing but makes total sense.

I really wanted the surgeon to make the decision for me. I was weary from making so many difficult decisions. In the end, though, I realized that it really was my decision to make. Hubs brought up the suggestion from the Mayo radiation oncologists, which was to leave the nodes, but then radiate the axillary area. It was as if a giant burden was lifted off of the surgeon’s shoulders. His eyes brightened just a little and he seemed to sit up straighter.

“Yes. I think that is a very reasonable option.” And with that, I decided to not do the full dissection. I did meet with the radiation oncologist just to make sure he was okay with that plan, and he was.

The last part of the surgical decision was whether or not to have a port placed. I’ll go into more detail in a future post about how ports work. Suffice it to say that having a port placed allows you to have blood drawn, be given medication and have the chemo drugs delivered without having a needle inserted into your vein each time. It’s more like getting a shot. This was an easy decision. I said, “Yes, please!”

So there you have it. Three weeks of mental turmoil and decisions that changed daily, and I’ve finally arrived at my final answer. While I wish that the answer were different, I am so very happy to at long last have a final answer. I can now move forward with treatment which will bring me that much closer to putting all of this behind me. And so I say, “Onward!”


1. r - March 15, 2014

I think your reasoning all sounds really good, which is amazing given the tough nature of the decisions you are describing! Our warmest thoughts are with you and the family, as always! *hugs*

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