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Exploding February 23, 2014

Posted by Judy in Musings.
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That’s what my brain has been on the verge of doing for the past two days. My brain is swimming with so much information, and the pressure of having to make such a difficult decision in a short amount of time is about to make my brain explode! One minute I think I’m close to making a decision and the next minute, I look at it from a different angle and I’m back to square one. So I’m back with another post asking for your help. I know that many of you aren’t comfortable giving your opinion for such a big decision, and many have said that you don’t feel qualified. Here’s the thing, I’m not looking for a professional opinion. I already got that from my doctors. Right now, I’m looking for the opinions of you, my friends, those who know me, those who have gone through similar experiences, those who have never experienced anything like this. I want to know your thoughts.

I met with my medical oncologist on Wednesday and based on the information we got there, it would seem that the Grim Reaper is no longer knocking at my door. He seems to have moved on for the time being. Hubs and I have taken the new information, mashed it up with the older info and have been spinning it around and around, left and right, end over end trying to find an answer, but to no avail. We have come to the following two conclusions:

1) The surgery decision is going to be made mostly based on our own thoughts and less on the doctor’s recommendations because they are seeing things from a very different perspective. We weren’t comfortable making a final surgery decision by Tuesday, so I’m canceling the re-excision and we are going to get a second opinion at Mayo Clinic this week.
2) We should get a second opinion regarding a post-surgery treatment plan. We learned that there’s a standard of care that most institutions follow for chemo, so getting a second opinion for that would be less helpful.

Let me catch you up on the new information, and then I’ll look at each of the surgical options.

  • The tumors are fast growing, but not to the point where I needed to have started chemo yesterday. We have time to get the surgery right and to carefully decide on a chemo plan.
  • With a mastectomy, I won’t need radiation because I have fewer than 4 lymph nodes involved and my tumors are all smaller than 5 cm.
  • If there are other tumors hiding out, and I choose a re-excision, radiation should take care of those tumors. I’m not really sure I trust that information, though. Not that I think the doctor is lying, I just don’t trust it.
  • The fact that one tumor was right up against the chest wall doesn’t worsen my prognosis. Anything that is left over near the chest will be blasted with either chemo or radiation. Again, I’m a little skeptical about this bit of info.
  • Lobular cancer tends to be more likely to produce tumors that pop up everywhere than it’s more popular counterpart, ductal cancer.
  • The her2 status of the tumors is up in the air. The biopsy showed it was her2 negative, which was good. Once the entire tumors were removed, the testing results were on the fence between positive and negative. The chemo plan is very different for each, so it’s important to know which way it is leaning. The doctor is ordering a “fish” test which will tip the scales (no pun intended) one way or the other and those results should be in within the week.
  • The oncologist feels that all of the information on the pathology report points to this disease being very treatable.

The three surgical options are re-excision (breast conservation, aka BCT), single mastectomy and double mastectomy. I have been applying the following measures to each of the options: vocal preservation, radiation and peace of mind.

Vocal preservation is probably the single most important measure. My vocal cords are so hugely important to me, I’m not sure that I can even put it into words. If my cords were damaged in surgery such that my ability to sing was compromised, I would be utterly devastated. Some surgeries are conducive to the use of LMA (laryngeal mask airways), while others require intubation. In terms of preserving the vocal cords, a LMA is going to provide the best outcome as it sits atop the cords rather than going in between the cords. I would think that minimizing the number of necessary surgeries would then minimize the possibilities that intubation would be necessary, thus minimizing the possibility of vocal cord damage.

Radiation is probably the easiest part of cancer treatment, but it’s still rather toxic. Technological advances have made it possible to really fine tune where the radiation is going and to cut down on the amount of damage to “bystander” organs. This is especially important in my case since I have positive margins on my chest wall, which is near the heart.

Peace of mind is something that oftentimes isn’t discussed in the office setting, but I do think it is important. In my case, peace of mind has two components: survivorship and recurrence. Everyone wants to know if they will survive the disease. Interestingly, the survivorship rates are the same for all three surgical options. (Although, there was a lit review published in 2013 stating that evidence does not clearly show that women under 40 have the same survivorship between BCT and mastectomy.) Recurrence rates, which measure the likelihood that cancer will return, either in the breast or to distant places in the body, are also tricky when looked at in younger women. Some studies showed that recurrence rates were very similar while others showed there was a marked difference.

This is the chart I drew up to help me see how everything came together.

BCT – lumpectomy single mastectomy double mastectomy
Vocal preservation LMA LMA LMA? Intubation?
Radiation yes no no
Peace of mind – recurrence 14%19% 16%6% no information
Peace of mind – survivorship 10 year – 84%15 year – 77% 10 year – 84%15 year – 79% no information

With both BCT or a single mastectomy, I would very likely be able to use a LMA. The surgeon’s nurse practitioner wasn’t able to answer whether the longer double mastectomy surgery would be eligible for LMA. If I had to be intubated, it really wouldn’t make sense to do that surgery since then I’d be using intubation to avoid intubation. But, if I could still use an LMA with a double, then it would be a no-brainer based on that measure.

The radiation measure is pretty straight forward, for the time being. I’m assuming that I won’t need it if anything is cut off. But, I’ll be meeting with the radiation oncologist on Monday, so I’ll be asking if the positive margin on the chest wall dictates a need for radiation regardless of the surgery.

Peace of mind is the really tricky measure. As far as survivorship goes, it’s a non-issue since it appears to be the same, or at least that’s the best data available right now. The recurrence number is the murkier one. If the difference really is only 2 percentage points between the surgeries, that amount is trivial. But 13 percentage points is getting close to being an amount that actually matters. So which one is it? Who knows!

I suppose the real problem here is a lack of definitive information. Some of the gaps in info can be easily filled in by talking to the appropriate doctors. Other gaps, like in the recurrence category, are going to remain ambiguous, thus making the surgical decision much more complex. This is partly why we are heading to Mayo to see if they have any other ways to provide me with the best outcome while optimizing the above measures.

ETA: I started this post on Thursday. When you are mulling things over and over and round and round, things change quickly. At this point I’m not mulling things over as intently, but given the fluidity of the situation, I’d still be happy to have you share your thoughts!

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