Because I started my blog in the midst of chemotherapy, rather than at the beginning of my story, I have jumped around quite a lot. This has turned out fine, because — at least in my experience — life is rarely linear. However, I do feel that it is time to continue with the story of how I ended up here, five out of eight chemos in, fighting breast cancer. This leads me to the second instalment of Breast Cancer for Dummies.
As I mentioned in my first post on this topic, “Breast Cancer for Dummies Part I,” I am not a doctor, nor do I have any expertise on this subject other than what I have learned along the way in dealing with my own disease. Nevertheless, I believe that you will find the following useful if you ever wanted to know more about breast cancer without reading a text-book, or if you are just curious to know how I got to this point. If this grabs you then you should start with Part I above if you haven’t already read it, or maybe give it a skim to refresh your recollection if you have read it. Conversely, if you find this all too technical and “involved,” fear not. More silly posts about this, that and the other thing are forthcoming. And I won’t be offended if you skip this one.
Moving right along…
Where did I leave off? Ah, yes. I took you through finding my lump, having imaging, getting biopsies and initial diagnosis. So here we are in the first week of January 2012 and we have, in the right breast, multifocal, ER+, PR+, HER2-, Grade II Ductal Carcinoma in Situ (DCIS) and Invasive Ductal Carcinoma (IDC) with no apparent lymphovascular invasion. The biopsies reveal at least two tumours, oriented radially, each appearing to measure under a centimetre.
Oh, and I won’t make you take a multiple choice quiz this time because I know you were upset about that in Part I and it made you have flashbacks from the SAT or whatever torturous British or [insert appropriate nationality] exams you had to take. I don’t want you breaking out into a cold sweat and shorting out your computer, tablet or smart phone. Isn’t that nice of me?
Anyhoo, when we left off I had just been diagnosed with breast cancer. What then? The first order of business with cancer like mine was to see a breast surgeon. When I was told this it sort of took me aback. What about an oncologist? What about “the whole picture?” Well, how it works is, they like to get the tumour(s) out of you first and then they figure out the whole picture. So breast surgeon it is. He looks at the pathology from your biopsies and your imagining and recommends what kind of surgery you need. This becomes step one in the big “killing it” game plan.
I found that putting in place the game plan was a big deal. Once I began to do so, I started feeling a hell of a lot more in control, because I knew what step one was. This was instrumental in moving beyond the initial shock of “how can I have cancer?!” and “why me?!” and all of that unproductive Nancy Kerrigan-esque jazz. No one likes a whiner.
Now, if you read my first post, “Halfway Through Chemo… How Did I Get Here?” you may recall that having spoken to Beth, my plastics/breast reconstruction surgeon buddy, I had already begun to wrap my head around removing the entire breast (maybe both) even before I had my diagnosis. Beth had seen and heard about a number of women who had opted for lumpectomies and then ended up with a recurrence in the same breast and thus a mastectomy anyhow. She had also seen women who had opted for a single mastectomy who ended up back under the knife for mastectomy number two after a recurrence in the “healthy” breast.
That being said, the most common surgery for breast cancer remains lumpectomy. With lumpectomy, the tumour is removed and then generally the patient is given radiotherapy to reduce the risk of a local recurrence in case any cancer cells remain at or near the site. Sometimes more surgery is required after the pathologist examines the removed “lump,” which you can think of as a cube of tissue, each side of which is rubbed with ink to determine whether there are “clean” or “dirty” margins. This is not an exact science, but the gist is that the surgeon wants to get a clear margin around the tumour so that dirty a/k/a cancer cells are not left in the patient.
So there I was, back in London, armed with my initial pathology. And I needed a breast surgeon.
One of the greatest sources of stress we faced was figuring out whether we were going to be comfortable doing my surgery and any additional (if any) treatment in London, having lived here for exactly five months, or whether we felt we needed to haul ass back to the US. So after we made some enquiries about the best and the brightest — hee hee! I almost wrote “the breast and the bightest,” — I started calling around. I went totally honey badger on the situation. (By the way if you still do not know what the honey badger is, I am going to get a little annoyed at you. So please watch Randall’s YouTube video linked above and get caught up.) I managed to secure two appointments with London-based breast surgeons on very short notice. A good sign.
Days later I saw the first guy. He was both a breast and reconstruction surgeon. He recommended based on my pathology and imaging that I have a mastectomy in the right breast and monitor the left breast. He ordered an MRI to try to get a better sense of the locations and sizes of my tumours.
Three days later, I saw the second surgeon. He also did both breast surgery and reconstruction and concurred that I needed a mastectomy. That the cancer was multifocal warranted removing all the breast tissue. I was comfortable with this and frankly relieved that both surgeons recommended the course of action I had already envisioned based on my conversations with Beth. I thought about the healthy left breast. I had been told that in the UK, many surgeons are loath to do a risk-reducing mastectomy when the unaffected breast can be “monitored” going forward, as surgeon no. 1 recommended.
I have to say, I didn’t like the idea of that. I did not ever want to deal with this again. Plus, I figured at the end of the day if I was going to lose one boob I might as well just do them both. One boob, two boobs, whatever. Just kill it.
I pushed the second surgeon on it. “If I were your sister, would you advise me to remove the other breast?” His head nodded an emphatic “yes” before “breast” even left my lips. His eyes never left mine as he said the word. Okay, this was my guy. He was honest and straightforward and aggressive. That was what I needed, wanted. So I decided I would have them both done. By him. Step one of the game plan firmly in place. Check one box. Kill it.
I know. This post is kind of heavy, not as much fun as the beer fermenting in the bathroom or wearing leopard print to chemo. But you have to take the bitter with the sweet, my friend. It is part and parcel of the whole picture and I want you to understand where I am and where I was.
And did I mention there is a silver lining? When you do a bilateral mastectomy, you do tend to have an easier time getting a more symmetrical cosmetic result. So that was a plus in my mind right there. No cancer and matching boobs. Good show!
Step two was a visit to a reconstruction surgeon. Now, as I mentioned, some breast surgeons (these are the folks who do lumpectomies and mastectomies — their job is to remove the cancer) do their own reconstructions and are “oncoplastic” (onco being cancer and plastic, well, duh…). But there are some pretty tricky reconstruction procedures to choose from these days, and many breast surgeons do not dabble in some of the more involved techniques.
I was told I could have an immediate reconstruction following skin-sparing bilateral mastectomies, which means that they were going to give me new (temporary) boobs right away after removing all of my breast tissue, but keeping as much of my own skin as possible. That way you look down and see your own skin. It’s just what’s inside that’s all new.
This is quite a departure from a radical mastectomy, which for years was all that was available to women, leaving them with a scar from armpit to midline. Of course, some patients today still require a radical mastectomy, depending on the extent of their cancer. Yet for many of these women, a delayed reconstruction remains a possibility. I was simply fortunate enough to be a candidate for instant gratification. An immediate boob swap, as it were.
But what kind of boob swap?
I went to see the breast recon guru so that I could consider all the possibilities. This guy is known not only for his excellent breast reconstructions but for his fabulous boob jobs to the stars. Aim high, I always say. I liked him immediately. He was gentle and kind and sympathetic, and I felt comfortable in his hands (literally — I mean all modesty goes out the window with this, people). I stripped and he felt me up. And then he pinched my tummy and my bottom and the inside of my thigh. Why? He was weighing his options. There are some pretty amazing microvascular surgeries they can do now where they take a bit of tissue from your abdomen, inner thigh or rear-end and make a boob out of it. Really. The benefit of these surgeries, although they do involve a site scar and require a long recovery period, is that the reconstructed boob can last indefinitely if all goes well. This is because it is made of your own tissue and fat, so it looks and acts more like a natural boob, which is — as we all know — mostly fat.
He didn’t pinch me for long, however, before it became clear that these fancy procedures were not an option for me. Not enough extra tissue, he said. I hadn’t eaten enough fries (chips if you are a limey). In a way I was relieved. It was sort of nice to be told that I was too thin for that option (aw shucks). Also, then I didn’t have to decide whether I wanted to deal with a seven-hour surgery that would require months of recovery while trying to take care of a five-year-old and a seven-year-old.
Now don’t get me wrong, the autologous tissue flap, as these things are called, is an excellent and desirable option. If done well and pulled off without complications it yields a more natural breast and can last forever. But it is a big deal. And there just wasn’t enough fat on me to do it so that was that.
Implants it is, he said. Okay. Do it up.
Have you ever seen a silicone implant? Most of them are shaped like M&Ms. They are symmetrical. But being in Europe has its advantages. Here, they have been using “shaped” implants for well over ten years, implants that are still in clinical trial in the United States. These are also known as gummy-bear or 410 implants and are made from cohesive silicone that is less liquid-y than the traditional silicone implant (thus the comparison to a gummy bear, though I wouldn’t want to eat one). These implants are interesting for breast reconstructions because they are shaped more like a natural breast, with a slope and a projection. That is, they are flatter at the top and rounder and fuller at the bottom. More boob-like.
Well, thanks to a friend of mine whose two buddies recently had breast cancer in the US and whose surgeon happened to be participating in the clinical trial, I knew about the gummy-bear implants. I asked the recon guru. Yes, he said. He liked them and would use them on me. But first I would get saline expanders (basically temporary implants that are inflated with salt water) in order to make a nice pocket for the permanent silicone implants. Getting them primed for boob swap number two later on down the line. Patience is a virtue…
By the way did you hear about that son of a bitch in France who sold all those implants made out of industrial grade silicone? I cannot even tell you what I want to do to him but I think you can imagine. It involves a honey badger.
Okay then, step two in place: reconstruction. I had started to assemble my dream team. And they would work together, the breast surgeon doing the mastectomy on one side with the reconstruction surgeon following on his heels, and then onto the other side.
But we need to back up. There was another order of business to address. This was the sentinel node biopsy. Before beginning the mastectomies, the breast surgeon would remove one or more lymph nodes from under my right arm to find out if they contained any cancer cells. The sentinel nodes are like the guardsmen lymph nodes — the first line of defence. A technician locates them by injecting you with a radio isotope near the tumour and then tracking to which lymph nodes that isotope drains. X marks the spot and the breast surgeon removes this node(s) at the beginning of surgery so that it can be tested for cancer cells, often while the patient is on the table. If cancer cells are found, the surgeon will perform an axillary lymph node dissection (ALND), which is when they remove a number of other (or all) the lymph nodes.
The long and short of it is that you don’t want to find cancer cells in your lymph nodes, because it means that the cancer has started to spread. You can still kill it of course, but it isn’t what you want. If they find cancer in your sentinel nodes, they remove more nodes to see how many of them contain cancer cells. And all of this factors into your treatment plan. Whether you will need chemotherapy to seek and destroy any cancer cells floating around in other parts of your body/bloodstream and/or radiation to kill any cancer cells that are hanging out at or near the site from which the tumour was removed.
The night before the surgery I slept well. Really, I did. I was calm and ready to get on with it. D-Day was February 7 and I had waited about a month after diagnosis for my surgery. Although this sounds scary, I was assured by doctors on two continents that unless you have a very aggressive form of cancer, waiting a month or even two should not make a difference because breast cancer is slow-growing.
Still, the waiting was not easy. Indeed, it was the hardest part. This is because you cannot progress with the next step of your game plan until after the tumours are removed during surgery and then analysed by the pathologists. So you wait, and noodle and try not to be too mental. I dealt with it by going to the gym a lot, which you know if you read “Work It Out.”
The morning of the surgery, my husband took me to the hospital, to be joined later by my mother who had stayed at home to see the girls off to school. Once I was in my room, each surgeon came to see me, separately. Each explained what he was going to do and the recon guru marked up my boobs with a permanent marker and took pictures. Again — all modesty out the window. I smiled for the camera. A little while after that, I waved to Bill and they wheeled me out of the room. The anaesthesiologist had me out in about 20 seconds.
I woke up to my name being called. “Emily… Emily.” I blinked, had no idea where I was. I snapped back into focus. “The node, was it negative?” I asked. The nurse didn’t know. “The node…” I said. The anaesthesiologist rounded the corner and confirmed: the node had been negative. I exhaled. So they hadn’t removed any other nodes. All had gone according to plan.
Shortly thereafter, they wheeled me back into my room. I started ordering my poor husband around immediately, telling him to send an email to everyone that all had gone well and I was fine. I had killed it.
But alas. I still had to wait for my final pathology report. And that is why cancer is such a BITCH. Because just when you think you have won one battle, it sucker punches you right in the face.
I went into the hospital on a Tuesday. On Saturday morning, (still in the hospital) the breast surgeon came to see me. I was happy to see him. We chatted briefly before he got that serious look that doctors get and told me he had some pathology results. Bill was still at home with the girls.
“Were there any surprises?” I asked. “Yes,” he said. I got my notebook. Sat down.
They say that when you get difficult news, you should always have someone with you because you only absorb about 20% of what you are told. I’d like to give myself credit for about 80%, but it is harder when you aren’t prepared.
The breast surgeon said that there were three things we had not expected:
(1) The tumours were larger than the imaging had indicated, because one area of what appeared to be discrete little spots were actually interconnected and therefore counted as one tumour. That one measured 30 mm or 3 cm. The other one was about 14 mm. Shit.
(2) Although the sentinel nodes were clear, two other tiny nodes that happened to come out as part of the mastectomy revealed “micrometastases,” which are bits of tumour that are 0.2 mm to 2 mm in size. These nodes needed to be further analysed to determine whether the cancer cells were in fact that tiny, and therefore less significant, or whether they were bigger and posed more of a threat. If “macrometastases” were found, they might eventually have to go in and do that axillary dissection.
In any event, (1) + (2) = chemotherapy for me. This was not easy news to digest. But I kept writing, determined to take intelligible notes so that I could make sense of it all later.
And he wasn’t finished.
(3) Even though I had had all of my breast tissue removed (the whole point of the mastectomy), the margins of the tissue removed in the right breast were not great. Tumour was “present” at the margins, meaning in my case that it had abutted the natural barriers of my chest wall, posteriorly, and my skin, anteriorly. Therefore, he thought, I needed radiation, something we had been about 85% sure I wasn’t going to face.
That Saturday was rough. And it marked the beginning of yet another waiting period.
But the next bit of news we got was good. A week later, we saw the oncologist and he confirmed that the nodes had only micrometastases. Micro mets used to be undetectable but modern technology has allowed us to find these tiny cells. Some doctors treat the presence of micro mets no differently than finding nothing in the nodes (i.e., they treat such a patient as “node negative”). My doctors, although very encouraged by this news, did feel that the presence of the micro mets plus the size of the tumours warranted a more aggressive stance on both chemotherapy and radiation, tipping the scales in favour of both. Part of this had to do with my age. They tend to be more aggressive with breast cancer when you are young.
When I asked the breast surgeon why there might have been tiny deposits of cancer in these random nodes that “happened” to come out with the mastectomy but not in my sentinel nodes, he indicated that when one has cancer there are probably micro mets present somewhere. It happens. And this does not mean that they will ever grow into tumours. Or that you have a bigger metastasis elsewhere. But it still blows your mind.
And that is how I ended up where I am today, five treatments in. Counting down to June 7, five short weeks from now. My last chemo.
Two weeks after that I will begin radiation, five days a week for five weeks (my, that’s a lot of fives). Whew.
If you got through all of that I commend you. It sure as hell pooped me out.