One-Trick Pony

So it’s sort of my anniversary. Or should I say cancerversary? Wait… I think I just threw up in my mouth a little in the face of such a cheesy, fabricated word. Anyhow, it has been a year since my diagnosis. To be completely accurate it has been a year, two weeks and one day. The date I got the call (“yes it does show a cancer … but you’ll have perky tits forever”) really isn’t what I think of as the anniversary, however, considering I was at least 66 2/3 % convinced that the results of the biopsy would not be good a week before the call came in.

I was not being pessimistic, people. I was being realistic. I had looked the radiologist in the eye, said “I am a big girl; what do you think” and she had levelled with me. She was “reasonably concerned” there was cancer present. So although lots of well-wishers told me not to worry and that everything would turn out fine I kind of knew that wasn’t how things were likely to go down. That was when I started dealing.

Which probably explains, at least in part, why this past December was such a tough month for me, as I mentioned in a previous post.

So how is this relevant now that December has come and — blissfully — gone? Well it got me thinking. That’s sort of a lie, actually. Because I am always thinking. In fact I wish I could turn off my brain sometimes. But it got me thinking, specifically, about what the hardest things have been about this experience to date. And I came up with something sort of interesting and to some people, maybe unexpected.

When I think back over the last fourteen months, from finding a lump in the shower, to the investigations, to confirmation that something sinister had taken up residence in my body, to surgery, chemo, radiation and all the delightful direct effects and side effects of such, to recovering after it all, the answer is as clear as a bell.

The hardest things have been (1) the waiting period between finding out that I might have cancer and formulating a plan of action (surgery + ?) after I found out I definitely had cancer, with a little bonus period after my surgery during which I had to wait yet again for more detailed pathology results leading to a further plan of action (chemo + radiation) and (2) most of the month of December, about a year from the beginning of all this crap. So there’s a pattern here, see it? It’s before and after. Those have been the hardest times. By far the most stressful. Not during. Hmm.

People who have been through this or something like it and those who have cared for them or who otherwise know warned me that the initial waiting period would be the worst. And that I might feel “down” after it was all over. The waiting was awful. It was terrifying and just plain old difficult to bear. I concur. But I did not feel down right after the treatment was over. Maybe a little adrift at times, but not really down. Until December when I got hit with a bad cold and a nasty clenching crimp in my back. That reminded me of being weak. Of having limitations. And things sort of deteriorated from there. Part of it was an obvious thing. I did not feel good physically, so it follows that I didn’t feel so hot mentally. The cold persisted and turned into a sinus infection and the back persisted such that I was uncomfortable for a good part of the day, every day. That doesn’t make for a great mood. I was downright cranky.

I know now that everyone and his dog seems to have had a nasty cold over December — some even got two colds. I am not special in that regard. It just especially affected me because it made me think about feeling unwell and the last time I had felt unwell was while I was undergoing chemotherapy. It was a lack of patience on my part. An “I’m well now and it’s over and there is no time or space for being sick because I refuse to be limited.” And the back thing was similar. It screwed up my workouts, deprived me of endorphins, made me lose a little muscle. Made me see a dip. I don’t like dips. I’m into crescendos.

I feel much better now. Much. It’s a new year and I have a feeling that despite the conventional wisdom, thirteen is going to be my lucky number. Or at least better than twelve, which, as a friend put it who also had a hell of a 2012, can totally kiss my ass.

In retrospect, although undergoing treatment was not pleasant, it really wasn’t that hard, relatively speaking. My mission was clear; beautiful in its simplicity. It was sort like I became this one-trick pony and the pony’s focus was this: kill it. I was an assassin. Single-minded, willing to do whatever it took to carry out the hit. The wire had already hit my numbered Swiss account and I would go and go until the hit was carried out.

What else made it bearable? It was temporary. I’ll shave my head today, but my hair will grow back tomorrow. I’ll feel shitty and have metal mouth and queasiness today but I will have my appetite back tomorrow. You get the gist. It was something to slog through, not a permanent state of affairs to which I had to adjust. And I started to write and then I learned a hell of a lot about myself.

I was also incredibly fortunate to handle the meds pretty well. Although I rested in bed on the afternoon following treatment and went to bed early every night, I wasn’t in bed all day and I still exercised and generally enjoyed a good appetite. None of my side effects landed me in the hospital, even though some were infuriating (such as the swollen thumb episode).

What’s my point? I don’t really have one. I’m just musing. People say I have been strong. That I sailed through treatment. I don’t really know if that is true. Maybe it was just easy for me to have a singular focus and to get through something I needed to get through. Put all life’s little stresses on hold. Sleep well at night because I knew what mattered and what didn’t. Wasn’t going to get worked up about the little bullshit over which I had spent plenty of time obsessing in the past. Big deal.

We’ll see how the next couple of months pan out. I have a date on the calendar for the acquisition of my new tits. That’s pretty exciting. Sort of. If you told me I would move to London and a year and a half later be going in for a set of silicone tits — ahem — after having had my original tits removed — I would not have believed you. I still find it hard to believe except that anything has to be better and more comfortable than these saline expanders with metal ports that feel about as hard as boulders sewn under my skin. I’m ready to move on. Ready to take the next step. We’ll hope for the best. See where it takes me. Plan on bikini shopping in the near future.

And then the world is gonna be my oyster again, bitch.


Survivor in the New World

Yesterday my husband and I drove from the Cape to Boston so that we could finally meet the oncologist at the Dana Farber Cancer Institute with whom we have been talking on the phone and corresponding via email since my diagnosis in January of this year. Think of him as my oncologist pen pal.

I had both of our children at the Brigham and Women’s Hospital very close by and numerous doctors appointments in the Longwood medical area over the eight years we lived here so I had passed the Dana Farber maybe a couple dozen times.

During those eight years of driving past the DFCI, however, “cancer” had occupied in my consciousness only a small corner as a nebulous malady. I stopped thinking about cancer as soon as the buildings were behind me. But yesterday was different.

Yesterday we pulled up and there it loomed. The Dana Farber Cancer Institute. This time we were driving right to it, not stealing a glance as we whizzed by. And we were going there for me.

It was pretty fucking weird. Even though all my treatments were over. Even post “end of shit.”

We parked the car and walked in to register for my appointment. I was issued a Dana Farber card, a bracelet and a badge. Cancer bling.

I was a little apprehensive. It’s odd coming in to see someone new, especially a heavy hitter, about something for which you have already been treated by someone else. On another continent. We had shipped my pathology over here and all of my medical records. So the DFCI had it all and had time to review it with fresh eyes. I wondered whether there would be a difference of opinion. And what the hell they would do about it ex post facto.

But despite my slight uneasiness about the situation, I knew that seeing someone in the US was the right thing to do. Good to have a reality check. Good to have someone in the New World who knows me and my case.

And you know what? It turned out just fine. Doc said I looked good and that he was satisfied with the treatments I’d had. There were no red flags. This was a relief, considering that twenty percent of the pathology the DFCI receives from other hospitals warrants some difference of opinion from its pathologists, including, at times, that there isn’t any cancer at all. Can you imagine coming in after surgery, chemo and radiation, or some combination thereof, and finding out that you never needed any of it? I would hope that in most cases, that significant a difference of opinion is rendered prior to and not following intervention. Dang.

It dawned on me that it wasn’t until the oncologist had made his pronouncements that I felt officially finished with treatment. Because until then, there was still that infinitesimal question mark about whether all the right stuff had been done.

So now I get to sit around and watch my hair grow back and wait for my thumb nail to fall off and fun shit like that. Lament the fact that I sort of missed the boat on my planned chemo makeover video because in two short weeks my eyebrows grew back with such vigour that penciling them in is just gilding the lily. Stop being a cancer patient and resume life as usual. As a survivor. A hairy survivor (but more on that later).

Someone once asked a group of us if we took issue with the term “survivor” and said that a lot of people dislike it and really struggle with it. What? Why? I raised my hand. I said “well, it sure beats the alternative.” Ain’t it the truth.


Tumour in a Blue Bag

In case you were wondering this is not a take-off on Devil in a Blue Dress, but it would be cool if it were, eh?

A while back I decided it would be prudent, or as my British dermatologist likes to put things, “sensible,” to see an oncologist at the Dana Farber Cancer Institute (the “DFCI”) in Boston during our visit to the US. Arranging for such an appointment may not sound like a big deal but let me tell you, it was.

Because all of my reports, imaging, pathology and histology stuff is over here in London, I have to transport not only myself to Boston but all of it as well. And this is why, yesterday, I found myself walking down the street carrying sections of my tumours on slides in a blue plastic bag.

I would have liked the hospital here to take care of all of this for me, but somehow that didn’t happen. The hospital (which is a world-famous cancer centre, by the way) didn’t seem to do this sort of thing and although it is apparently used to receiving a great deal of biological materials via international mail it doesn’t seem to happen much the other way around.

So anyhow, the samples I requested (because the DFCI wanted to review them prior to my appointment) ended up in my breast surgeon’s office and I got a phone call that it might be best if I just came and picked them up in person and simply took them with me on the plane to Boston. Somewhat bewildered but nonetheless pleased that the requested materials had been made available promptly, I agreed.

After I ended the call, I imagined myself going through airport security at Heathrow and having my carry-on bag searched. “And what pray tell are these, Madame?” The guard asks suspiciously. “Oh those. Those are just sections of my right tit. I like to carry them around with me when I travel.” Hmmm. No thanks. I thought the better of the plan. Called back and asked if they could do the mailing from the breast surgeon’s office. But their mail room didn’t use one of the carriers that the DFCI had listed as acceptable. So I went and picked the damn things up after all and out I walked onto Harley Street, tumours in hand.

As I ambled along, gently swinging the blue bag, I had irrational thoughts of accidentally leaving it somewhere — all physical evidence of my disease being lost forever. I descended into the tube at Warren Street and boarded my train. I clutched the bag in my right hand and my purse in my left and looked around. Satisfied that no one was about to wrestle my plastic baggie of tumours away from me, I pulled from my purse my latest addiction, The Girl With the Dragon Tattoo, and read a few pages during my brief ride.

I alighted at my stop (the British like to use the term “alight” rather than “get off” because it sounds fancier) in Belsize Park, triple checking that I still had the bag. When I got to my house I put the bag right on my desk so that the cleaning lady wouldn’t mistake it for trash or recycling and heave it outside. And there it now sits. Awaiting dispatch.

How terribly odd to carry around my cancer in a bag. Those bad bits of me that were, only six months ago, on the inside of my body, slowly growing and threatening my health, my life. I’m looking at the bag right now. I feel rather smug. Sort of like “ha ha, asshole. You are so low that you are in a second-hand, rather crumpled, blue plastic shopping bag and that is all you deserve.”

I spent part of the day wringing my hands over whether to use FedEx or DHL to dispatch the goods and what to write on the customs form. It demands a value. What should I put? Worthless? Priceless? The lady at the DFCI who deals with international patients (which I now am on account of living in the UK and having international insurance) suggested that I write in $1.00. One dollar for my cancer cells and their unique characteristics. One dollar for the thing that has changed my life forever.

As much as I don’t want them lost in the mail I can tell you that they don’t deserve to be valued at one red cent. They are dead. We cut them out and killed them and squashed them between slides and put them in plastic cases in a blue plastic bag. Now they are just specimens. Just evidence of what was.

You know, it’s funny. Years ago, right after my husband and I moved from our small apartment in New York City to the Boston area he joked for no apparent reason one day “your bosoms arrived in the mail.” Not knowing the odd significance of this prognostication we both thought it was wildly funny — albeit totally random. Now I am about to mail my bosoms to Boston while I take British Airways. It’s pretty weird, people.


Breast Cancer for Dummies Part Deux

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.

Breast Cancer for Dummies Part I

You know, it’s funny. I didn’t know much about breast cancer before I had my battery of tests over Christmas holiday and started to go all hyper lawyer research on the subject. I suppose that isn’t unusual. Things move on and off one’s radar, but even with a relative or a friend going through something, there is a lot you don’t know. Until it affects you personally.

And unless you are a health care professional or you or a close relative or friend is going through breast cancer, or it simply interests you or it is for whatever reason your cause, you don’t need to know that much about it. However, I thought it might be interesting to put together a little primer on some basics for those people who want to have some clue but who aren’t ready to run out and buy Dr. Susan Love’s Breast Book, which is several inches thick. Very informative, but not exactly beach reading.

Forgive the personal slant.  I still don’t know that much about breast cancer that isn’t “my” type of cancer. And I refuse to use the “P” word — prognosis. So don’t you go running off and typing in this and that and trying to prognosticate me or anyone else based on bits of information you get along the way. Prognosis is very personal and as my oncologist said to me, a percentage based on years-old data about five-year survival rates isn’t going to tell us anything about YOU, the individual patient. Besides, we have already established that I am killing it.

Oh and before I start, let me disclaim: I am not a medical professional nor am I giving any medical advice. This is all just based on my own experience and knowledge and I haven’t vetted it with a doctor (or anyone else). It’s simply what I’ve picked up along the way. If you are a breast expert and you see anything here that does not appear correct please submit a comment and I shall fix it forthwith. And if you don’t want a primer on breast cancer feel free to skip today’s blog. It is longish and only has the occasional witty repartee.

Oh are you still there?

Right, so off we go now.

Actually wait, let’s start with a multiple choice quiz just for fun. Oh stop sweating; you LOVE multiple choice. Pretend you are reading Cosmo or GQ and it is a sex quiz. Juicy!

1. You are doing a breast self-exam in the shower. You feel something in your breast or axilla (that’s armpit for you Latin losers) that gives you pause, be it a hard bit or something sore or tender or something that just feels different or weird.

You should:

A) Not worry about it — it’s probably nothing.
B) Report the problem to your OB-GYN and set up an appointment.
C) A or B depending on what you feel.

Answer:  B

Don’t screw around. When I found my little barely palpable (doctors’ words) pea-sized lump (which turned out as you will learn to be a hell of a lot larger than a pea), it was not as hard as I thought it would be having felt “dummy” breasts with a “tumour” at both a conference for women’s health and at my OB’s office. Also, my lump was sore and tender and didn’t seem to stay in one place if I pushed at it (all of which I had read and heard — even from doctors — indicates that it probably isn’t cancer).

Just do it. And if you are nursing and think you just have mastitis or a clogged milk duct do not assume such. I have heard too many stories of women who found a lump while nursing a newborn and it turned out to be cancer.

So there you are with your lump and you go for your OB-GYN appointment. What next?  After your physical exam your doctor should order some imaging so the radiologists can look at the breast tissue up close and personal.

2.  Imaging used to look at breast tissue and to aid in detecting breast cancer includes:

A) Mammogram
B) Ultrasound
D) All of the above

Answer: D

Because I was 39 when I found my lump, I had not yet had a baseline mammogram, which generally start at 40 in the US. My OB-GYN ordered a mammogram and an ultrasound to check my breast. The mammogram revealed clusters of micro calcifications in my right breast, which CAN be indicative of cancerous activity (calcifications are not uncommon, and macro calcifications are generally ok — micro can be ok too but depends on how they are arranged). These are tiny and looked to me at best like flecks of white powder on the slide. What the mammogram did not see, however, was the tumours. Not even a little bit. The ultrasound following the mammogram revealed two masses which did turn out to be tumours. A later MRI (post-biopsy and diagnosis) revealed further suspicious areas that when analysed after surgery turned out to be interconnected bits of tumour.

Imaging is amazing but it has limitations. Mammos and ultrasounds don’t show everything and sometimes imaging, such as an MRI, can lead to false positives, or in other words, seeing things that aren’t really there. Other things that can feel like or show up as masses on imaging include cysts, fibroadenomas, bruises, mastitis and scar tissue.

Often after having imaging the patient is told to wait (and sweat and freak out and pee four times) while the images are examined and then further images are requested. This doesn’t mean you have cancer. But the waiting sucks either way.

Tip: if you have had imaging before, it can serve as a baseline to radiologists and technicians doing subsequent imaging. Make sure that the imaging centre has your old images and the dates thereof and doesn’t waste time pouring over a new thing that turns out to be something you had five years ago that hasn’t changed and is in fact fine. Don’t balk — you have to take the reins if you want good healthcare.

The radiologist will rate what they see on the images with a special scale (you don’t need to know the specifics). It may or may not warrant a biopsy. Sometimes if it doesn’t warrant a biopsy, but the doc has some concerns, she will suggest the patient return for follow-up imaging in some period of months (e.g. 3 or 6). Sometimes, however, a biopsy is warranted. These are performed in various ways, including a core needle biopsy, where they take a little “linguine” slice of the area of concern, or surgically under general anaesthesia, by removing the lump or suspicious portion of the breast. Needle biopsies can be guided by a special mammogram machine (stereotactic biopsy) or via ultrasound. The radiologist performing the biopsy uses the image to locate the area to be biopsied and takes her samples.

Sometimes the radiologist will insert titanium markers into the biopsy sites to let others know where she has been. Cool, huh? This can be helpful later on so they know where the suspicious areas were if they have trouble finding them later. And no, it won’t set off the metal detector at the airport or cause an MRI machine to start smoking. It’s titanium, not stainless steel, for crying out loud.

3. About 80% of all breast biopsies turn out NOT to be cancer.

A) True
B) False

Answer: A

This is helpful to know. It becomes less helpful when the fellow (I mean medical fellow, not chap — mine was a chick anyhow) tells you this and then the more experienced radiologist comes in and decides your mass “is definitely not a normal cyst” and refuses to put a percentage on whether your thing is cancer. Great…

Once the biopsies are performed, the samples are sent to histology to be reviewed by a pathologist. The pathologist will determine whether there are any cancer cells in the samples taken, what kind of cancer there is and what certain features of that cancer are.

Waiting for these results is not fun times. In fact, it was probably the worst week I have ever had in my life. But I still tried to party, since it was the holidays and all.

As I mentioned in my first post, at this point in the process it was clear to me that it was more likely than not (this is lawyer speak — embrace it it won’t be the last time I revert) that I had cancer. Some kind of cancer. This is when the temptation to scour the internet soars and you find yourself with your finger on the button… about to take the plunge into the black hole that is medical information available on the internet. This brings me to a very important question in our quiz:

4. You may have breast cancer. You do not know very much about the topic and are keen to learn more in order to be better informed, torture yourself and because you cannot help it. You should:

A) Get right on the internet and surf away with abandon.
B) Do not touch the internet. Instead, take a sleeping pill and get drunk.
C) Go to the book store and purchase a reputable book on breast cancer.
D) Some combination of the above.

Answer: This is a trick question. I cannot answer this one for you. Because it really depends on your personality. If you are an information person and a rational logical person you are unlikely to be satisfied by B. I wouldn’t recommend A to anyone, because not only is there a lot of crap on the internet, but because you will likely get overwhelmed and have difficulty processing what you find and deciding what is relevant/helpful and what is not at this early stage in the game. C seems a solid choice if you can force yourself to sit still and read a book on the topic. Had I to do it all over again I would choose D.

If you must do internet research, pick your websites carefully. Here are some ones that I have found helpful, but not without limitations:; I advise you not to read a lot of personal posts by breast cancer survivors and current sufferers (except for my blog since I am brilliant, of course) because lots of people are dumbasses or totally mental or some combination thereof and you may just get confused or simply annoyed. No offence. But it’s the same thing with forums on anything else, such as the best carseat to select for your infant or whether a home tongue piercing is easily reversible.

Okay, I have offended some people. I am sorry. You may eventually take great comfort in participating in a forum about breast cancer, particularly if you find others who appear to have a similar diagnosis. My point is really this: IT IS TOO EARLY. Doing this now may just freak you out. You aren’t a member of the club yet. Wait and see. You can always find your internet forum cancer buddies later if need be.

At this point I did do some internet research. I quickly decided which sites appeared not to be full of crap and I tried to digest some basic information without going too far. I didn’t read a book about it for a long time. That came later. And of course I had Beth, my plastic surgeon/breast recon best childhood friend. Most people don’t have a Beth. She gave my husband and me a lot of information in the beginning and we knew we could trust her.

5. The following is by far the most common type of breast cancer diagnosed:

A) Ductal Carcinoma In Situ (DCIS)
B) Invasive Ductal Carcinoma (IDC)
C) Inflammatory Breast Cancer

Answer: B.  That’s right, about 80% of breast cancers are invasive ductal carcinomas.  Invasive cancer means that the cancer has spread to tissues surrounding the area where it started, in this case, in the milk ducts. DCIS is noninvasive but also starts in the milk ducts. It has not yet spread to the surrounding tissues in the breast.

I was diagnosed with multifocal DCIS and IDC. This is not uncommon. The areas of IDC started out as DCIS and then moved beyond the duct and thus became IDC. So both types were present. And I fall into the majority. I just love being like most people. Yay.

Once you find out what kind of cancer you have you also learn some things about how the cancer cells are behaving and how different they look from normal cells. This is called grading. As my OB-GYN put it, most cancers are at least a Grade II, which means “moderately differentiated.” The more icky they look and the less like normal properly-behaving cells, the higher the grade. Mine were Grade II. Misbehaving but not misbehaving as badly as they could be.

You also find out some other features from pathology, such as whether there is any lympho-vascular invasion present in the biopsy samples. This tells us whether those pesky cancer cells in the samples have gotten into the blood vessels and lymphatic system. My initial pathology report: mine have not. This is later re-examined after surgery when they remove more tissue and can test with more accuracy.

A third thing you will find out is whether the cancer cells biopsied are hormone receptor (oestrogen or progesterone) positive or negative, or positive or negative for expressing HER2 which is human epidermal growth factor receptor 2. Shut up you fellow Americans, that is how they spell oestrogen in the UK. Really.

Receptor statuses are indicated as such: ER+/-; PR+/- and HER2+/-. Your combination of receptor statuses will guide your doctors in how to treat effectively your cancer. For instance, if you are ER+, oestrogen from your body will make your cancer grow and you may receive hormone or endocrine therapy either to block your natural production of oestrogen or to introduce fake oestrogen into your body to trick the receptors on the cancer cells. These receptors will grab the decoy oestrogen and then die or become dormant. Ha, ha!

The results of my hormone and HER2 receptor status seems to take ages. It is the final piece of data that we receive from the biopsy. And they’re in: It is ER+/PR+/HER2-. This, all things considered, is a lovely combination and good for treatment purposes. Rather pathetically, I am elated at this news. One takes what one can get.

I will thus need endocrine therapy, which has proven very effective, as part of my treatment. Being HER2- means that I will not need a drug, such as Herceptin, to deal with that protein receptor. Some people have a combination called “triple negative,” which means that they are negative for all receptors. This kind of cancer is certainly treatable but tends to be more aggressive and will not respond to endocrine or hormone therapy. And there are other combinations as well. Some of these tend to be more or less likely depending on whether you have one of the breast cancer genes they can test for — but that is for Part Deux of Breast Cancer for Dummies.

So you see there are a lot of factors at play here, even at the very beginning of the story. All of these bits of information start to fit together and build a game plan as to how to treat the individual patient. How to kill your cancer.

Well that was a mouthful. I promise the next entry will be shorter and funnier and dirtier and sexier. But sometimes you need to take your medicine. Part Deux to follow at a later date. But not tomorrow. That took ages. I’m wiped.

Peace out.