It can all start differently. And no matter how it starts, you will feel a lot of guilt.
It can be just a mammogram at one point showing some microcalcifications, or worse.
It can be you yourself feeling a lump when you're taking a shower and scrubbing your breast or armpit area. Or noting that your nipple kind of got inverted somehow.
It can be you just feeling more and more fatigued every day or having some bone pain you never did and that doesn't feel right.
But no matter how it starts, during the grim beginning of this hellish journey that is starting for you, you WILL go through self guilt. You will tell yourself "I should have kept my schedule for mammograms and not skip any". Or "I should have gone to the doctor the first time I felt this lump". Or "I should have drank less wine". Or "I shouldn't have smoked". And a myriad of other things.
The thing is, you need to stop. Not only it is not helpful, it will give you more anguish and stress. And the truth is that breast cancer, most of the time, is just a crapshot. I've known women who had a healthy diet all their lives, never smoked, never drank alcohol, exercised, went for all their scheduled mammograms and yearly physical exams, and still were diagnosed with Stage IV from the start. And I've known women who all their lives ate extremely unhealthy, smoke like chimneys, drank daily, never exercised, and have lived long lives.
Now of course, it is a good thing to try and remove from your lifestyle anything that might increase the risk of breast cancer. Luck can only be stretched so far. But the point I am trying to make here is that you need to stop feeling guilty.
The second emotional issue that happens right after you've been diagnosed is the feeling that you are not in control of your life. You will feel that your own body betrayed you. Also, people around you will not understand what an emotional turmoil you are going through. This is the point where I cannot stress enough that you should not and must not expect anyone who hasn't gone through what you're going through (or worse) do understand anything at all. Of course the people who love you will be compassionate and try to comfort you, but, trust me, if they hadn't gone through this they cannot understand. Do not expect to be understood by them.
So to get to more practical things: what you should expect.
First will be the mammogram. If it is just your regular mammogram, expect to be called back in for a diagnostic mammogram. If that is suspicious too, you will have an ultrasound. All in the same day, usually.
VERY IMPORTANT. Don't skip your mammograms. I've heard so many times women saying "I'd rather not know". I've even heard my sister saying that. That is the stupidest thing. Ever.
It won't go away if you don't know about it.
The earlier it's caught, the higher your chances to live longer. Especially if it's a high grade (aggressive fast grower) you want to catch it before it gets to spread to other organs.
Sorry for being blunt, but would you rather live a long life without a breast or die within a couple years (or even months) in horrible pain and discomfort while having both breasts?
To know what to look for, search "Bi-RADS" on the report. Now to be honest, the other words that should worry you are "micro-calcifications". Those usually show the ductal tumors (be them in situ or invasive). The bad thing is that if it's a lobular carcinoma, those usually aren't "seen" very well by mammograms.
What does the Bi-RAD mean? You can find about it clicking on THIS LINK.
Now, even if you see there Bi-RADS 4, it doesn't mean that you HAVE breast cancer. Usually only around 10% of the Bi-RADS 4 are cancers. But it means that most likely you will go for an ultrasound and a breast biopsy.
IF the breast biopsy comes back "clean", you are pretty much ok. You will probably be recommended to have a mammogram yearly or even every 6 months for a while.
What you must know about the breast biopsy:
1. It will be very uncomfortable.
2. It hurts - especially afterwards.
It is recommended to ask for a Xanax to take about half an hour before the procedure. Believe me, you want to be calm while this is going on.
You will be lying down on your tummy on a table that has a hole in it, about chest level. You will let the breast in question hang down through that hole.
They will clamp that breast between two sheets, pretty much the way it's clamped down when you have the mammogram. The sheets have a hole in them, through which the surgeon radiologist will do the biopsy.
They first inject a local anesthetic. THAT one will hurt. You will feel like your breast has just caught on fire. Fortunately that only lasts for a few seconds, until the anesthetic starts taking effect.
After that, the surgeon will go in with a large-gauge needle and take samples. If your Bi-RADS was 5 (and sometimes even for 4 - but it depends on what they see on the mammogram, because it's image assisted biopsy) they might insert a "clip". A clip is a piece of bent wire that is put there in case the biopsy comes back positive, and the tumor is supposed to be small, and you only need a lumpectomy. It makes it easy for the breast cancer surgeon to find the spot instead of cutting around your breast trying to find where the tumor is.
The whole biopsy takes anywhere from 10 to 40 minutes.
Afterwards, you will be given little round flat bags filled with silicone and instructed to keep them in the freezer, and put them in your bra to help with swelling.
Also, you will be instructed (most of the time, if not, I'm just telling this to you) to have a significant other or family member or friend to press on the spot to reduce bleeding. The pressing will have to be strong, even if it hurts, but it DOES help.
Try not to get over too many potholes on your way home. Jostling up and down will cause more bleeding. If the surgeon is nice he might even give you some pain pills. Trust me, you want those.
The area will be painful, bruised and swollen for several days - even a week. Keep using the little frozen patches to help with swelling. I also found that for this type of swelling the ointments for arthritis (like icy hot) help a lot - just don't get it on the puncture site. These type of ointments usually work by increasing the blood flow, and the more blood flow you have in the area, the faster you will heal.
It takes from 24 hours to 5 days to receive the report from the biopsy. This is the first of the "hurry up and wait" game you might have to play for a while, if you are indeed diagnosed with breast cancer.
If you ARE diagnosed with breast cancer, usually the next step is a breast MRI.
The breast MRI is different from the regular MRI in that you are lying face down (again) on a bed that this time has TWO holes at chest height, and you let both of your breasts hang down through those holes. Your arms will be raised above your head, laying on the bed, and you will have an IV with contrast going through one of them
The thing that you must be aware of is that the MRI is usually over-positive. It will most likely show a larger area of breast tissue changes than the tumor actually is. Don't freak out when you see what dimensions the report will show. Only the post-surgery pathology gives the full picture of the extent of the breast cancer.
To give you my own example.
My breast MRI showed an area of 10 cm diameter in my right breast (the one with cancer) and a 7 cm diameter area in the left breast. After I had the bilateral mastectomy, in fact the tumor in the right breast was only 4 cm, and there was no breast cancer in the left breast - but, indeed, there were a lot of changes in the breast tissue, as my breast cancer surgeon said "it was getting ready to turn nasty too".
The only bad thing is that the breast MRI might not pick on very small tumors. For example, it showed I didn't have lymph node involvement, while the pathology after the mastectomy showed that I had a 3 mm tumor in a lymph node.
This procedure is not painful, just uncomfortable. And then of course you go again to the "hurry up and wait" phase waiting for the radiology report.
I will write about what follows next in the next post.
