And so now, we wait

Once a person receives a cancer diagnosis, there is this push to move through many appointments and tests quickly so that treatment can begin. Sometimes this is warranted if the cancer is a fast-growing one. Many times, it’s not really necessary and plays into the fear-mongering surrounding cancer in general. This leads the general populace to believe that treatment should begin within days. I have a “friend” who has said to me twice “You haven’t gotten that taken care of yet?” She even had the gall to go to my mom and say, “You’re a nurse, you know that this needs to get taken care of quickly. Why isn’t she doing anything? You need to convince her to get a move on!”

My cancer is not one that grows in a lightening fast manner. The surgeon said he is comfortable with a 3 month time lapse between diagnosis and surgery. They generally tell their patients 2 months, that way if something comes up to delay things, they are still within the safe 3 month window. I’m totally okay with that. Maybe if I didn’t like the surgeon, I’d feel differently, but after meeting him this week, DH and I decided that we liked him quite well. It’s a good thing, too, since we had to wait almost THREE HOURS to get in to see him! I have no idea why he was running so far behind! But, once it was our turn, he did spend half an hour with us explaining the different surgeries, answering our questions and generally impressing us with his bedside manner and competence. He even said that he would be happy to answer any questions again at a later time. We could just leave a message for him and he would call us back in the evening. I like a doctor who is willing to explain and re-explain things.

For the moment, we have a tentative surgery date of February 11 with the surgery being a lumpectomy. Generally, lobular cancers aren’t good candidates for lumpectomies since the tumors tend to not have clearly defined margins, making it harder to be certain that the entire tumor has been removed. In my case, the surgeon feels that a lumpectomy is a good option because the tumors are both small and in the same quadrant. I’m not fully convinced. There’s a small part of me that worries, “How will he know that he got all of it and that he didn’t leave some skinny sliver behind?” Ultimately, I do trust his judgement, but it is hard to not be doubtful. In my case, he plans on taking a larger amount of tissue than necessary to give a better chance of having clear margins. Once the tissue is removed, the tumors will be dissected and analyzed more thoroughly. The margins, or edges of the tissue are also going to be analyzed to make sure that there aren’t any cancer cells there.

He spent a good amount of time explaining how the lumpectomy would go and what the cosmetic outcome would be. I was very curious about this, wondering how a portion of the breast could be chopped out without it looking all bizarre after the surgery. It’s partly that the body is amazing and will fill in the gap, and partly the way that they perform the surgery and close up the wound. They’ll bring the edges of the breast tissue over the cavity and sew it shut. Then some fluid will be placed in the cavity as a place holder. Over the course of 6-8 weeks, the body will create more of this liquid (frankly, I don’t really remember what the liquid is called). During the liquidy time, there will be lots of sloshing sounds coming from the breast . . . I find that amusing! The liquid will eventually become more gelatinous, and then scar tissue will start to form to fill in the cavity. There will always be scar tissue there, but it will soften up with time. I’m in awe of how the human body can repair itself in that way!

The other part of the surgery is going to be a sentinel node biopsy, whose purpose is to see whether or not the cancer has spread to any of my lymph nodes. The idea is to figure out to which one or two lymph nodes the cancer from the primary tumor is likely to have spread. These lymph nodes will be removed and analyzed by the pathologist to see whether or not they are malignant. If the pathologist finds cancer in the nodes, then chemo will definitely be in the cards in an effort to kill off any errant cells that may have gone further afield. Based on the results from all of the scans (MRI, bone and CT scan), the surgeon is pretty confident that there won’t be any lymph involvement. This is good. Nonetheless, we are still doing the node biopsy.

A few hours before the surgery, they will be injecting a radioactive isotope, technisium 99 (the same one from the bone scan), into the breast tissue right near the tumors. They will also be injecting a blue dye in the same area. During the biopsy, the surgeon will check three things:
1) he’ll look for the radioactive lymph nodes
2) he’ll look for the nodes that are blue from the dye
3) he’ll palpate the nodes to see if any are swollen or seem suspicious.

Using this combination of techniques means he’ll be removing the correct lymph nodes with 100% certainty. I like those odds.

Now, if any of the nodes come back cancerous, in addition to the chemo, I’ll have to have another surgery in which all of the lymph nodes in that area would be removed. Previously, I had the idea that there were five lymph nodes in that area. I was wrong. There are 21 nodes! If I were older, like over 50, they wouldn’t think about removing all of the nodes. But, the fact that I’m young means that the outcomes are better if all of the nodes are removed. I actually don’t remember the reasoning the surgeon gave for this. If it does come down to needing the second surgery, I’ll look into finding out the reason. For now, no need to clog my brain up with that info!

I also asked who exactly would be in the operating room. I’m getting treatment at a teaching hospital, which means there’s a chance a resident would be performing the surgery. This particular surgeon doesn’t allow residents to perform the breast surgeries because of the importance of having a good cosmetic outcome. That’s good for me. But it did make me wonder . . . . how exactly do breast surgeons get experience if they aren’t allowed to get experience while residents? Hmmmmm. Anyway, so the surgeon I met will definitely be the one wielding the scalpel.

We also talked about anesthesiologists and the importance of preserving my vocal cords. We asked if there was one anesthesiologist that he preferred over another. Fortunately, he said they all were good. Then he said, “There are also nurse anesthetists.” When we asked if he would be comfortable with them, he said, “Most of them.” Hmmmm . . . .most isn’t really good enough for me. I must’ve raised my eyebrown when he said that, because he followed his comment up by saying if he saw that a less-than-ideal nurse anesthetist was assigned to my surgery, he would talk to the anesthesiologist and request that the nurse not be involved in this case. So, I feel pretty good about the people that will be involved with the surgery.

Now, there is one more issue that could be a game changer . . . . .the genetic testing results. If you recall, my blood was sent off to be tested for the specific BRCA1 mutation that some family members have. Those results came back last week and I do NOT have that particular mutation. Frankly, I was quite shocked as I was fully expecting to have it. The lab is now going to run the full testing, which will test for all of the other BRCA1 mutations as well as the BRCA2 mutations. The first thing that the surgeon said when he walked in was that he wanted to wait until the results of the full BRCA testing came back before doing the surgery, since his recommendation would be to do a bilateral mastectomy if the results came back positive for a mutation.

To recap: if the results are normal or negative, then the surgery will be a lumpectomy. If they come back positive, then I have to make a big decision: bilateral mastectomy or lumpectomy with super-vigilant monitoring for the rest of my life. So yeah, the genetic testing could be a big game changer. Those results won’t be back for another week or two, meaning that the next few weeks will be relatively normal. I’ll be filling my days with the unpredictability of stay-at-home mom-dom. A welcome unpredictability that is perfectly unsurprising and manageable, which is much more than can be said for the post-diagnosis state of affairs.

And so now, we wait.