Two steps forward

I can deal with anything I will have to deal in this ridiculous adventure. I feel confident about that. However, I feel like I reserve the right to be bothered by things that are trivial in the grand scheme of things.

One of those things is that I won’t be able to get reconstructive surgery until after chemo and radiation. The surgeon estimated that to be a year from now. For some reason, that REALLY bothers me.

We faxed all of my medical records to MD Anderson this morning. I am waiting for them to go through them to make sure everything is there. Once that is done, they will schedule my appointment. They are looking at the third week of October in scheduling right now. That means that I would need to reschedule my surgery up here in order to get a second opinion down there.

One of the positives about going down there is that the surgeon, plastic surgeon, oncologist, etc. all work together as a team to develop and implement your treatment plan. Not so up here. It is very disjointed.

For instance, the surgeon yesterday told me that I would likely need radiation due to where the tumor was located; therefore, I cannot get reconstruction at the time of the mastectomy. However, she has never spoken to my oncologist (neither have I for the record – that appointment is tomorrow). Based on her assumption, she doesn’t intend to engage a plastic surgeon until next year when the chemo/radiation is done.

I just feel like she/we should at least ASK if it is possible that I won’t have radiation before we make that decision.

Going to MD Anderson will likely tell me the same thing. I mean, she has good logic behind why I would need radiation – it is likely sitting on my chest muscle because the tumor is very high up on my chest. They won’t take out the muscle so they need to do radiation to make sure they get it all. I get that. I would just feel better if she, the oncologist and the plastic surgeon had discussed and agreed that this is best.

But I also don’t want to wait until November to start what will dominate a year or more of my life. Let’s get this thing started!

So, I am postponing my “MD Anderson-or-bust” decision until they call me back with an appointment day. It isn’t like I can do anything now anyway.

Big decisions, folks. Big decisions.

Update from the surgeon visit

Just a quick update for everyone…

We met with the surgeon this afternoon. There are a few things that we learned:

 

1) My tumor is highly receptive to estrogen and progesterone. It is HER2 negative. In essence, this is a good thing because they can give treat it easier.

2) The surgeon says based on the fact that it is in multiple places, I need to do a full mastectomy. A double mastectomy is also an option for me should I choose to go that route. Positives are that I am at higher risk to get cancer on the other side, and this would reduce that. Also, symmetry in reconstruction would be better.

3) Bad news is that she says I will have to have radiation (though she is not the one to make that call – we meet with the oncologist on Wednesday for more info on this) because it is so high up and probably on the muscle on my chest wall. While they will remove the tissue, they will not remove the muscle so they will likely want to do radiation to get rid of it there. Getting radiation means that I am not able to get reconstruction at the time of my mastectomy. The radiation reduces the elasticity in the skin which means that a plastic surgeon would have to remove skin from other areas (tummy, underarms) and use that to replace the damaged skin during reconstruction. This means I have to go through chemo and radiation before I can get reconstruction surgery. That was hard to hear.

4) Based on the size of the tumor, I am at least a Stage 2. We will know more about stages when she tests the lymph nodes. Good news is that the MRI didn’t show anything that made her think it had made it there. She also checked me today to see if there was swelling  and all was good.

5) Breast cancer can spread through the lymph system or blood. Either way, the chemo will kill any renegade cancer cells that might have escaped the primary tumor.

For those I have talked to, I gave myself an self-imposed deadline of October 17 for surgery. I pulled this date out of NOWHERE, not even knowing if that was a weekend. This arbitrary deadline helped me focus and begin getting things ready at work and at home. Well, we decided to schedule surgery today just so we can have that booked while we decide on second opinion options. When we sat down with the scheduler, she said that the doctor only did these types of surgeries on Wednesdays. That means we could do October 10 or October 17…

Bizarre coincidence, I’m sure, but as much as I’ve been proclaiming that October 17 is my surgery date…it sure seems like a sign! We went ahead and booked that date.

The doctor said I’d be out of work for about 4 weeks, but this would be based on my stamina not on my pain. She said most people just run out of energy fast.

So, as of right now, I am scheduled for surgery in the early morning on October 17. I don’t know if we will keep this date, but it is good to have something on the books. We have a lot to think about and consider, but unfortunately, my brain shuts down under stress. It is an early bedtime for me tonight, and we will make major decisions tomorrow.

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