The Breast Cancer Train

<This post is very heavy in medical stuff; I'm kind of using it as a post to have all the appointments and discussions in one place.>

My friend Dawn uses the phrase "Cancer Train" to describe the set of stops along the way from suspicion to diagnosis to treatment.  And she told me if they found something, it would be a bullet train.  Her explanation of all the stops along the way made it so much easier to understand when I had appointments and already "knew" what the next step would be.  In case any of you are in the same boat in the future and this might help, here's how my train ride went.

Monday, November 24, 2014:

Mom's in the nursing home, and we're trying very hard to break her out so she can be home for Thanksgiving.  Mira's on day two of a high-fever, non-stop cough illness (which we now are pretty sure was influenza).  I've got a paper, presentation, and homework assignment for a class and feel I'll never get them done, at least not to the level of work I am happy with.  I've got decisions to make about job applications, interviews, and positions.  And then I find a lump in my right breast.  I really don't have time for it, but know I'll worry more if I don't get it looked at, so plan to call my doctor in the morning.  

Tuesday, 11/25:

Dr. Hall has an opening at 9:15.  I cancel my office hours and head in.  He looks concerned but says it's probably nothing, but standard procedure says to get a diagnostic mammogram with ultrasound to rule out something bad.  I call to make the appointment and they cannot get me in for TWO WEEKS!  They tell me that I can call back to see if there are any cancellations, but unfortunately none of the three possible locations have any openings before that time.  I spend the next several nights waking up in a sweat, imagining awful things, kicking myself for opting out of yearly mammograms since I'm so low risk, and generally falling apart.

<insert Thanksgiving break, Mom home, Mira feeling better, some job decisions--all good, but still I'm unable to eat and am a complete wreck>

Tuesday, 12/2:

After calling every day, multiple times a day, the scheduling person "knows" me and calls ME to get me in today following a cancellation.  I leave class 15 minutes early and have the diagnostic mammogram and ultrasound.  I can tell it's not good as they do multiple re-takes on the mammogram and then the ultrasound tech calls in the radiologist.  He asks if I have questions and by this time I'm prepared on the different types of breast cancer.  I ask what he thinks it might be, and he says they can't say for sure, but due to its appearance, it's not a fluid-filled cyst and it's not confined to the ducts.  He tells me it's good that I found the lump on my own, and that they need to do a biopsy.  I burst into tears in the nurse's office and while there were no openings for over a week (again), she takes pity on me and squeezes me in over lunch hour two days later.

Thursday, 12/4:

I have a guest speaker scheduled for the class I teach, and without explanation, I ask him to take over the entire class for me (Thanks, Everett--I still owe you for that!) since the biopsy is at the same time.  If this were not my breast, I'd be fascinated by the procedure.  My right breast is numbed and a tiny cut is made under my armpit.  I can watch on the ultrasound screen as the radiologist directs a huge needle into the lump, then clicks a button and it shoots through the mass, collecting a sample.  While looking on the ultrasound, he sees several other smaller "areas of concern" (I can see them, too) and so he collects them as well.  Then he puts two small titanium clips to mark the areas where he took the biopsy (they will show up in ultrasounds, x-rays, maybe MRIs, too).  The radiologist tells me that I did a great thing by finding the lump on my own, as it would not have shown up on a screening mammogram at all.  He says that he will recommend, if it is positive for cancer, that I have an MRI to determine the extent of it, since he found those extra spots on the ultrasound and to look at my other breast as well.  He hands me a prayer card (which freaks me out a little) and tells me that he hopes it brings me comfort.  I get an ice pack and orders to take it easy and not lift heavy things for two days.

Friday, 12/5:

I'm a complete wreck.  I know they will call with the biopsy results today.  Greg has to work.  My mom's home and my mother- and father-in-law are coming to visit and want to have lunch with me.  I'm afraid if I eat lunch, I'll vomit.  I'm making bargains with anything and everything that, at the last minute, it will turn out that this was just a terrible mistake and it's nothing (though I'm pretty sure that's not the case).  The phone call finally comes just before the kids arrive home from school.  And when I receive the diagnosis of invasive lobular adenocarcinoma, Grade 3, I am suddenly fine.  Unfortunately, I can tell by looking at Greg's face that he is not.  He's been so strong the past two weeks as I've fallen apart, that I really don't expect this.  The nurse tells me that a nurse navigator will call me yet that afternoon to explain the next steps.  She encourages me to NOT look things up on the internet, as there is a lot of misinformation out there and the navigator will suggest some good websites.  When Debbie the nurse navigator calls, she is very matter-of-fact and tells me exactly what will happen next.  She also tells me what a great thing I did by discovering the lump on my own and how the earlier it's found, the better the treatment options and outcomes.  She explains that I will likely have surgery followed by chemo of some sort (depending on the pathology report), maybe radiation, and possibly hormone therapy.  The types of each will be determined by my team at a later date.  For now, I need to schedule a breast MRI and set up a meeting with the genetic counselor.

Tuesday, 12/9:

I meet with the genetic counselor, who sketches out a pedigree for my family, including all cancers.  I hadn't realized how much cancer there is until seeing it drawn out.  She explains to me that only about 10% of breast cancer has a genetic link, but since I'm young (defined as under 45; funny I turn 45 the next month), they recommend genetic testing for known hereditary breast cancers.  I can choose to test (via NextGen sequencing) only the 5 most common, the 17 with at least some connection, or an even larger panel of 40-something, with many vaguely correlated.  I opt for the middle plan, which starts with the five most common (BRCA1, BRCA2, TP53, PTEN, CDH1).  Not only does this give potential information for my daughters, but many of these are associated with cancers in other parts of the body, and so if I'm positive for them, I would be more closely screened for the other cancers.  If none of these 5 are positive, then they will test for the next 12 (ATM, BARD1, BRIP1, CHEK2, MRE11A, MUTYH, NBN, NF1, PALB2, RAD50, RAD51C and RAD51D).

Friday, 12/12:

It's MRI day.  I'm not a big fan of medical appointments, but the number of them I've had in the last three weeks has made them almost routine.  However the MRI machine scares me. Several years ago I had to have a CT scan to examine a spot found on my kidney during a routine ultrasound to check my spleen due to my blood counts (yeah, once you start down that path, it keeps going...).  Although only the lower part of my body went into the machine, and it was very quick, I still had a panic attack while undergoing the procedure.  MRIs circle your whole body, are terribly noisy, and take a long time (45 minutes to an hour, I was told).  The nurse navigator had suggested I get a prescription for Xanax to get me through it, and I did.  I opt to listen to music and choose a "Best of the 80's" CD to keep me company.  Whether it's the music, the Xanax, or the very nice technician, I make it through.  Greg and I are able to see the MRI results right away and are very happy to see that it only shows the spot(s) in my right breast with no evidence of cancer in the left breast or the lymph nodes.  They still aren't able to tell if the cluster of spots is multiple tumors, or just parts of one bigger tumor (and it doesn't impact treatment, so not a big deal), but nothing found today changes the plan, and we're all pretty happy with the results.  We are also given the results of the pathology.  Both areas are the same type of cancer--in addition to being invasive lobular and Grade 3, they are positive for estrogen receptor (ER+), progesterone receptor (PrR+) and Her2-Neu (Her2+) and Ki67 positive.  Appointment to reconvene next week with the whole team for the full treatment plan.

Wednesday, 12/17:

This is a big day.  Not only is it the day of the team meeting, but it's the day Cara comes home for winter break, and therefore the day we tell the family.  

After dropping the younger kids at school, Greg and I head to the Cancer Center at Columbia-St. Mary's and spend the next three hours in meetings with the Nurse Navigators, the surgeon, the medical oncologist, the radiation oncologist, and a representative from the American Cancer Society.  All of the team is wonderful, talks to us at our level, is warm and confidence-inspiring.  AND they give me a graduation card, signed by everyone.  All our options are discussed, including:

Surgery: 

I can opt for lumpectomy or mastectomy; there is no difference in outcome between lumpectomy with radiation and mastectomy; can do just right side, or prophylactic bilateral mastectomy; can choose no reconstruction and use (or don't use) prosthesis, or opt for reconstruction;  reconstruction can be done at time of mastectomy or later; reconstruction can be with implants, or by transferring tissue from another part of your body (belly or butt or back)

Chemotherapy:  

The final choice will wait until post-surgical pathology, but most likely is:

Adriamycin and Cytoxan IV every 2 weeks for 4 cycles (8 weeks)

Paclitaxel and Herceptin IV every week for 12 cycles (12 weeks)

Herceptin IV alone every 3 weeks for the rest of the year

Alternately, after getting final pathology, the chemo may be changed to:

Taxotere, Carboplatin & Herceptin IV every 3 weeks for 6 cycles (18 weeks)

Herceptin IV alone every 3 weeks for the rest of the year

Radiation:  

If I opt for lumpectomy, radiation must happen and would be daily (M-F) for 6 1/2 weeks.  But at this point there's no evidence of the cancer being in the lymph nodes, and so if I opt for a mastectomy and the LN biopsy is negative, I won't need radiation.

Hormone Therapy:

Tamoxifen (blocks the estrogen receptor) by pill for five years.

We have a thorough diagnosis, some decisions to make, and an idea of what the next year to six years will look like.  AND we have the utmost confidence that we will beat this bastard.  It's time to tell people.