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“Behind door number two!” February 19, 2014

Posted by Judy in Musings.
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(A little warning: this is a looong and probably confusing post. Just so you know!)

Do you remember the game show, “Let’s Make a Deal?” While it was fun to watch the show, I could never have been on it . . . . I don’t really like surprises and that game was fraught with them. When I was pregnant with #1, a friend wanted to throw me a surprise baby shower. The hubs convinced her that wouldn’t be a good idea since I don’t like surprises. I like to think that I’m an orderly and organized person, and surprises just throw a monkey wrench into everything. I’m okay with spontaneity, just not surprises.

Some surprises are more manageable than others. Birthday parties, for example, are okay. Surprises in health care, not so much. Yesterday was results day. Since I don’t like surprises, I called on Monday to see if they would give me the path results beforehand. Going in to my appointment on Tuesday, I already knew that some of the lymph nodes were involved and that some of the margins were not clear. Armed with that information, I had a list of questions ready to fire away at the surgeon. He came in and straight away started drawing pictures to explain the non-zero margins. These margins are an issue because that means that not all of the cancer was removed. There were several places where the margins were not clear.

1) The yellow portion. This is the margin in between two specimens, so it’s really inconsequential since that margin is in the center of two pieces that were removed.

2) The orange portion. This is potentially a problem because this part of the specimen was cut all the way back to the chest wall so there isn’t any breast tissue left to remove. What does that mean? It means that the cancer went all the way back to the chest muscle wall. It could be that the cancer cells stopped right at the chest wall, or that they continued on. The way to deal with that cancer is to use radiation. This would be no biggie if the tumor was on the right. The tumor is on the left, so we are now presented with the problem of how to radiate the chest wall muscle without radiating the heart. This particular hospital happens to have an advanced technology whereby they are able to take a 3-dimensional movie right before the radiation which allows them to time the arrival the radiation pulse such that it will miss the heart. But, it’s not a perfect system.

3) The red portion. The surgeon removed this extra section because during surgery, he felt something that didn’t seem right, so he chose to remove the section. The picture shows that the margin shared between the brown and the purple rectangle is clear. It’s the outside margin of the brown rectangle that is not clear, meaning that there is still cancer left behind. Tumor number three. SURPRISE!! WT!@&#%

This is my version of his picture. Keep in mind that breasts are three dimensional. Well, I guess not all breasts are, but mine are. 😉 Anyway, I’m drawing a three dimensional object on a 2 dimensional plane. So, prepare to be a bit confused.

CAM00050

Firstly, how the HECK did they miss this tumor on the MRI? It’s .9cm, which is just a smidge smaller that the tumor RIGHT NEXT TO IT!

Secondly, how do we know that there aren’t other tumors hiding in plain sight that were missed by the radiologist? Gah!!

I’ll take a brief detour here to say that I have no issues at all with the surgeon. He has done his job to the best of his ability and has been nothing but forthcoming from the very beginning. I really, really like this surgeon.
– He does not have a god complex and is quite humble.
– He is very thorough in his explanations, using diagrams and examples.
– He does his best to conserve the breast, moving to mastectomy only when it’s absolutely necessary.
– He values the opinions of the other doctors on the team such that he said I should see what the oncologist has to say regarding the non-negative margins.
– Hubs appreciates that the surgeon has an appreciation for healthcare policy and has an interest in making some changes. In fact, hubs and the surgeon got into a little discussion about policy. As the surgeon was leaving and shaking DH’s hand he said, “We should spend some time together outside of the medical office.” Hahahah, the surgeon wants to hang out with the hubs! Awesomenes =) Suffice it to say, we really like the surgeon.

The same cannot be said for the radiologists and their apparent inability to accurately read the imaging. Let’s count the ways that they have messed up.

– A mass is found and a biopsy is ordered.
– During the biopsy, another tumor is found. (Whoops!)
– An MRI is performed and they determine that there are no new tumors in the left breast and nothing in the right breast.
– During the lumpectomy, another tumor is found. (Whoops!)

Are we seeing a pattern here? I have to say, I have no confidence that there aren’t more tumors hiding out in the left or that the right side is actually clear. That’s not really a life-affirming feeling!

So turning again to the non-negative margins and the options for rectification. The surgeon recommended a follow-up surgery to do a re-excision where he would remove a little extra tissue in the red areas. I thought he said he would remove one millimeter, but in retrospect, that seems like a really ridiculously small amount to remove. It’s probably more like 2-5 millimeters. The tricky thing is that it’s really just an educated guess on the part of the surgeon. No imaging exists that would be able to guide him in deciding how much to remove. He just goes on intuition and past experience.

The surgeon readily admitted that the re-excision wasn’t strictly necessary since the outcomes would not be changed. That, of course, begs the question: why do it? His response: so that if there is a future recurrence, we can know that we did everything we could to remove all of the cancer. Translation: cover your butt.

At this point, I’m scheduled to have the re-excision next Tuesday. But, we aren’t settled on whether or not that is the surgery to do. I thought that the mastectomy conversation had been shelved. The appearance, however, of the second surprise tumor coupled with the other information in the pathology report, has brought that conversation back to being front and center.

I’ll come back to that discussion in a minute as I need to fill you in on the rest of the pathology report. The upshot of the matter is that 95% of the news on the report was bad.

1) Of the three lymph nodes that were removed, two had cancer, although none of the cancer cells had busted out of the lymph nodes. (This is the single piece of positive info.)
2) One tumor is 1.5 cm, while the other is 1.0 cm.
3) The stage of the cancer is IIa, which puts it in the early-ish detection category.
4) The tumors are aggressive, very aggressive. They got a grade of 3, with 3 being the highest grade possible. This means that the nuclei have a “marked variation in size and shape, occasionally with very large and bizarre forms”. (I don’t know why, but I find it hilarious to see the word “bizarre” in a formal medical report!) It also means that the cells are dividing at a rapid rate.
5) The tumors all seem to have invasive and in situ properties. This basically means that among badly behaving cells, these tumor cells are behaving especially badly.

See, not a whole lot of good news here. My mantra today has been: It could always be worse. It could be inflammatory breast cancer or stage 4 cancer! As I understand it, all of this information means that I’ll be hitting a chemo cocktail bar sometime in the very near future. (So long, hair!) It also means that this is going to be a longer and more difficult fight than we first imagined.

When thinking about breast cancer survival, what you really need to think about is metastasis. No-one dies from breast cancer since the breasts aren’t vital organs. You can manage recurrences in the breast for quite a long time. What does cause death is when the breast cancer has metastasized to the bones, liver, brain or lungs. It would follow that in order to increase your chances of survivorship, you would need to avoid metastasis at all costs.

And now, back to the mastectomy discussion. Given that there are now three aggressive tumors, and that tumors keep popping up unexpectedly, it would seem that the chances of other tumors showing would be rather high. The more tumors you have showing up, the greater the opportunity for the cancer cells to metastasize to the lymph and beyond. In my head, I’m thinking that removing as much breast tissue as possible would make it more difficult for the tumors to form and thus metastasize. But then again, this could be overkill. It’s also quite possible that the chemo and radiation will take care of the cancer cells such that they won’t be a problem. That, coupled with increased monitoring from now until forever could be a good way of staying ahead of the problem. I’m left with a difficult decision and frankly, I have no idea what to do. So I’m reaching out to all of you for advice. Based on the current information, what would you choose and why? I’m being serious here. I actually want and need you to give me your opinion. If you know me IRL, you can email me. FB friends can message me there and blog followers can message me at my blog email address: adivamoment dot gmail dot com.

The past 24 hours have been the most challenging yet. I’ve been forced to actually sit down and contemplate my mortality and I’ve experience a new emotion: fear . . . pure and unbridled fear. Up until now, I’ve been able to face the challenges in a very practical manner, maybe even a little bit detached from the reality. In light of yesterday’s information, fear is the dominant emotion. I read about aggressive tumors and those with a high mitotic rate and then I read about the poor prognosis associated with those factors and my heart just stops.

I still believe in the Great Physician and I still have a huge amount of faith. But that doesn’t preclude me from having enormous amounts of fear. Pray for me, friends!

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