Category Archives: Breast Cancer

Breast Cancer for Dummies Part I

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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
C) MRI
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: www.breastcancer.org; www.macmillan.org.uk. 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.

A Chemo Haiku

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I am tired so let’s make today’s short and sweet, shall we?

I like to think of chemotherapy as napalm for cancer. Because napalm conjures flamethrower warfare, however, perhaps Agent Orange is a more apt metaphor. Particularly since it was a defoliant.

Of course, that chemo nukes the patient is somewhat problematic, but I can handle it. Just get in there and kill any fast growing cell you find and be done with it. Death to the old bad cells. And, alas, to a lot of the old good cells. But lo, this brings me to today’s submission: a chemo haiku.

Chemotherapy
The ultimate spring cleaning
A new me will blossom

Thank you, Kate, for inspiring today’s blog with a picture of angelique tulips bursting forth. Now if only this crap, London weather would improve I might see some blossoming in my own garden in the near future.

Assaulted at the Global Festival: Things Not to Say to a Cancer Patient

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I am feeling good.  Looking good.  I have on make-up AND my new Missoni headscarf in a colourful chevron stripe — did you know that turbans and headscarves are en vogue right now?  Lucky me.

My mom is in town visiting and it is a Sunday.  We go to the girls’ school for the biannual Global Festival.  The gymnasium is chock full of delicacies from around the world.  And it is a good day so I am on my second plate of food.  I graze, zigzag and chit chat.  Run into people I know, watch the performances on stage including an astounding Crouching Tiger-esque routine with two little kids and a couple of long hard sticks.  These kids look invincible.  I like it.

I am normal.  I am just hanging out.

Until… “Oh, dear are you having chemo?”  A matronly English woman holding a plate of scones is addressing me.

You are fucking kidding me, lady.  “Uh, yes.”  I say.  Other responses pop into my mind.  “No I am just chic and wearing a headscarf.  I am a spring pirate.  I have alopecia.  I am muslim.”

The woman is still standing there.  Looking concerned.

The woman proceeds to ask about my treatment, my cancer, inform me that she had chemo for breast cancer as well a few years ago, ask if my oncologist is Prof So-And-So, blah blah blah.  Then the clincher:  “Well don’t be surprised if you feel depressed after it is all over.  And you won’t feel at all normal for at least a year, maybe even eighteen months to two years after.”

Gee, that is helpful.  Now I feel better.  I look at the scones.  I consider sneezing on them.  The interaction seems to drag on for another five minutes and then is blissfully over.

Mom is pissed.  I tell her not to worry.  I have nothing to do with her, Mom.  She ain’t me.  And that is just her story.  And you see that’s when it hit me.  Her story ain’t my story.  Nobody’s story is my story.  And vice versa.

I have met enough people who have been through this to know that everyone’s story is different with some similarities along the way.  Learning about someone else’s personal experience may provide guidance or comfort.  But it should never be flung in one’s face unsolicited — to what end?  Especially if the message is negative.

“You will feel like shit.  Shittier than you think.”  That’s the takeaway?  I’ll pass, thank you.  On the advice and the scones.

I asked myself why this woman approached me.  Did she see me and think “that woman is going through what I went through.”   Maybe.  She certainly wanted me to know that I was going to have a really hard time.  Just in case I didn’t know.

But I was just hanging out being me, eating some weird Iranian thing that I grabbed from the Iranian table without asking what it was.  And I didn’t ASK her.

So here’s some advice:  Don’t ask don’t tell.  That’s right, if I don’t ask then don’t tell me.

Don’t tell me I will have a harder time than I think, that I will get x, y and z side effects, that my energy level will suck for over a year.  Of course if I want to know I will ask you and then all bets are off.  Fire away.  Tell me everything.

One day I’ll tell you all the other dumb shit people, most of whom have never had cancer themselves, have said to me.  By then I know the list will be longer.

Meanwhile I plan to kill it, recover and move on.  However long it takes ME to do so.  But I’m planning on a speedy recovery just to prove the scone lady wrong.

 

Halfway Through Chemo… How Did I Get Here?

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I am lying awake again.  Damn steroids.  I refuse to check the time — will just make it harder to get back to sleep if I know.  I block out as many senses as possible with earplugs and a blinder.  But I cannot turn off my brain.  Or the steroid-induced rapid beating of my heart.  So I think about this, my first blog post.

It took me this long to get here.  I am halfway through chemotherapy for breast cancer but this journey started in November of 2011 when I discovered a hard, pea-sized lump in my right breast.  I was in the shower.  The classic scenario.  I remember thinking:  what the FUCK is that?  That was not there before.  Could it be something sinister?  Is it as hard as I imagined a tumour would be?  Oh by the way you Americans will have to embrace my UK spelling — if tumour with a “u” or authorise with an “s” bugs you then you might as well stop reading now.  Or shall I say, sod off?

I informed my husband of my discovery.  Killed the mood.  Maybe it’s a cyst.  I’ll give it a couple weeks and if it doesn’t go away I will get everything checked out in the US over Christmas holiday.   We had relocated here from the suburbs of Boston in late July.  Not my first foray into expat life, but my first since I am no longer single.  We arrive across the pond with our two daughters, Isabel and Charlotte, aged 7 and then 4, ready to plunge into a new life, a new adventure.  Little did we know.

But London is good to me, to us.  The girls settle into their new school.  They get scooters.  I make them wear helmets.  Bill begins to settle into a new law office.  I make preparations to continue my interior decoration studies, having left the world of corporate law (mergers & acquisitions) — at least as a practitioner — in New York when we discovered I was pregnant with Isabel and also moving to Boston in 2004.

We are both lawyers.  But I discovered that despite my left-brain dominance, which I sheepishly try to squelch every time I take one of those tests that is supposed to indicate brain dominance, there is indeed a right brain in there (well about 30%) dying to get out.  After falling asleep so many times pondering the absence of good design in children’s spaces  I decide to take some classes at the Boston Architectural College.  This goes very well so I plan to pursue my certificate in London and upon arrival get busy vetting the top schools.  There will be some duplication — they do an all or nothing approach here rather than the uber mom-friendly one class at a time option I was doing in Boston.  I decide on an intensive part-time program that will be complete in one academic year.  For some reason I take out tuition reimbursement insurance just in case, I figure, some relative gets sick or something bizarre happens.  Something bizarre.

The lump does not go away.  I spend much of my Christmas break undergoing tests, first a physical exam which doesn’t raise too many eyebrows but then a mammogram and ultrasound which do.  Finally core needle biopsies of the suspicious areas.  I tell the radiologist performing the biopsies to level with me.  I am a big girl.  She doesn’t pull any punches.  She is “reasonably concerned” there is cancer.  Shit.  I cry a little bit.  I have to pee about four times.  Nerves.  I start to process.  But it always always helps me to get information and begin to process it.  I need to know; want to know.  I will have my answer but not until two days after we fly back to London on New Year’s Day.   I kind of knew though.

On the flight back to London we are four across in business class with the little girls side by side facing backwards and Bill and me flanking them facing forward.  I watch Tinker Tailor Soldier Spy.  It is a poor choice for my mood.  I cannot stop looking at the girls’ joyful faces, their bursts of laughter during Winnie The Pooh, their innocence.  How can I inflict myself on them?  I who am their protector.

Bill and I suffer our worst night that night.  At bedtime, I peruse the internet on breast cancer.  Stupid.  I know better.  In the esteemed words of Professor Taub in The Sure Thing, “as the dog who returneth to his own vomit so doth the fool to his folly.”  I emerge from my “research” and wake my sleeping husband.  We fall apart for a few hours.  That and the jet lag make the next days exhausting.  Oh and the questions.  Can we treat this in London?  My initial instinct:  I want to.  We have moved into a charming and cozy house in northwest London and the girls are settled into their school.  We have sold our home in the Boston area.  We have started to gather names of oncologists and hospitals just in case.

We get the call.  It is cancer.  Multifocal in the right breast.  Days of hardcore research on and calls to breast and reconstruction surgeons ensue.  I thank my lucky stars my best childhood friend, Beth, is a plastic surgeon who educated us over the holiday about breast cancer and reconstruction issues even before we had the diagnosis.  I feel I am entering this fight with some background, with some power.  I am already thinking mastectomy.  Maybe even bilateral.  Never want to do this again.  Ever. Ever. Ever.  Just want to KILL IT.

Because that is what I do when I set my mind to something.

Stay tuned for the next instalment, dear reader.

Oh and for those of you waiting for that filthy humour that you have come to expect from me, don’t be discouraged.  I just have to take you there the way I got there.