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.
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.
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:
D) All of the above
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.
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.