January 15, 2015

Things are happening!  And also not happening.

I got a phone call from Dr. Ching (breast surgeon) to confirm that we’re switching the order so that I’m doing chemo first then surgery.  She had two things she wanted to talk to me about that change.  First, sometimes the tumor shrinks so much from chemo that it cannot be found easily.  In order to ensure she can find the tumor site after chemo, she told me that I needed to have a clip, or marker, put in place where the tumor is.  Other women who have had negative biopsies have had this done so that during the annual mammogram, the radiologist can make sure to look at that area.  I had the clip put in this morning. It’s not bleeding as much as when I had the biopsy, and the pain is definitely less, but it’s still a wee awkward to be icing my breast for 10 minutes every hour at work.

The 2nd purpose was to let me know that there are some increased risks in other areas by doing chemo first. “Baseline” refers to doing surgery first, then chemo.

1.  Baseline, 3% of surgeries are unable to “find” the sentinel lymph nodes b/c the radioactive dye does not travel through the milk ducts to the lymph nodes.  Doing chemo first increases the chance to 4%.  If I’m in the 4%, Dr. Ching will remove ALL the lymph nodes on my right side.

2.  Baseline, the % of false positives of taking just the affected lymph nodes is down to 6% (from previous 10%, using the sentinel lymph node technique).  Doing chemo first increases the chance to 12%, so the recommendation is that she will remove all 3 lymph nodes (the first grouping of lymph nodes) during surgery, not just the sentinel lymph node.  (False positive in this case means thinking that surgery removed all the cancerous material when in fact it did not.)

Oh well.  I guess there are plusses and minuses to everything.

The other issue which came up has to do with timing.  When Dr. Priya talked to me about doing chemo first, she said that because the tumor is reduced, I can have surgery whenever I wanted.  She didn’t recommend putting off for a really long time, but certainly I could wait until I completed my commitments (mid-August) to have surgery. Dr. Ching said no, you need to have surgery 4-6 weeks after your last treatment.  I sent a message to Dr. Priya after that phone call which essentially asked if I could delay chemo so that surgery could be in August, or could she convince Dr. Ching that I can have surgery 3 months after my last infusion.  I haven’t heard back, and if I don’t hear soon, I’ll call Dr. Priya’s nurse.
In the meantime, the outpatient surgery to install my port has been scheduled from January 23 at 2 pm.  Sisters have been conscripted to take me and pick me up…now all I need is to know when chemo will start.

January 5, 2015

Today was the first day back at work since the holidays, and the first chance I had to tell my staff and colleagues about my breast cancer.   I was not afraid to tell them; after all, I’d already decided to be very open about my cancer, and I knew that they would all be supportive.  I felt badly about giving this news to one staff member whose father was just diagnosed with Stage IV pancreatic cancer – I’m sure it feels like cancer is all around for this person.  And I felt equally bad for the person who started crying.  You two know who you are:  for the first, I’m sorry to have added to your emotional burden and for the second, ♥ to you for your sensitivity.

Today was also the day that I posted my status on Facebook – which means I’ve let the genie out of the bottle now!  I’ve always planned to be very public about this:  if my diagnosis and treatment can help even one person be more diligent to do her breast self-exams and get her annual mammograms, then my job is done.  Naturally, I’m extremely touched and humbled by all the outpouring of love, support, prayers and encouragement – you all rock, my friends!

Onto more mundane things.  I have an appointment with Dr. Priya, my medical oncologist on Monday.  For some reason she feels the need to discuss more specific treatment now that we know that I’m HER2 positive.  It’s fine – I have a few questions which have come up since our first consultation, such as:  will I have hair loss for the entire year because of the Herceptin?  Am I candidate for Perjeta?  Will I get a port for the Herceptin?  Is it recommended that folks who visit me get a flu shot?

My pre and post op appointments have been set.  My pre op appointment is on Jan 27, so my last day at work will be Jan 26 for at least a month.  My sister will be able to take me to my post op appointment on Monday, Feb 2.   It takes a village.  It really does.

December 31, 2014

Happy New Year’s Eve!

I had a consult with Dr. Lundahl, the radiation oncologist yesterday, but couldn’t post because we went from the appointment to the Foster Farms San Francisco Bowl game. Despite the chilly temps, Stanford played very well and was victorious, so it was worth braving what for us were freezing temps.

Dr. Lundahl has a dry sense of humor, which I love.  His first words were that no, you won’t be radioactive during treatment.  He must get this question a lot!  He explained that they’d be irradiating the entire breast from 2 directions, that radiation therapy is 1-2 weeks after I finish general chemo (not the targeted therapy of Herceptin), and that the treatment will likely run 5-6 weeks.  Treatment is 5 days a week for those 5-6 weeks, but each treatment is only 30 minutes or so.  Not much new information for me, but it was good to meet him.  He also said that Dr. Ching does a great job of not being overly aggressive in removing breast tissue.  One of the questions I had was since Dr. Ching is concerned about how close the tumor is to my skin and that she may not be able to get clear margins, whether that will have any affect on the treatment plan.  He didn’t think so, but did reiterate that if clear margins aren’t achieved, a second surgery is needed.

While I was tailgating before the bowl game, Dr. Priya called to see how I was doing, and asked that I call her back.  I called her back today, but she’s out until Monday.  I did talk to her nurse, who said that Dr. Priya actually wanted me to come back in to talk to her, probably about the HER2 positive diagnosis and how this will affect the chemo treatment.  The nurse will call me back next week after she’s had a chance to talk with Dr. Priya.

I’m also expecting a call from Dora, Dr. White’s surgery scheduler, to book pre-op appointments.  This is my life now, going from appointment to appointment.

These arrived the other day.  I have awesome friends.

and reminds me of this post I saw on Facebook the other day:  IMG_3092.2014-12-29_174435

I’ve only told a few people about my diagnosis at this point, but everyone has been amazing. Thank you, Julie & Kelsey, for the beautiful flowers.  Love you!

Enjoy your New Year’s celebrations – stay safe!

December 26, 2014

We met with Dr. White, the plastic surgeon today.  He explained and drew what the breast lift  involves, and I don’t mind saying, it’s a little wierd.  Thousands of women have this surgery, so I suppose it works, but it’s all very…odd.  In my case this surgery is called a contra-lateral reduction.  There’s a 15% chance that I’ll lose sensation around the nipple, but honestly I won’t care if the cancer is out of me.  Truth be told I’m a little sad that I lose a little breast size – it’s not like I have overly large breasts to begin with, but again, it’ll be worth it if the surgery (and subsequent treatment) takes care of the cancer.

Post-surgery care is under Dr. White’s care, although Dr. Ching has said several times to listen to her about post-surgery instructions – at least for the right side.  I’ll believe her, because I certainly don’t want to get lymphedema.   That just seems like a whole other ball of wax that I’d rather avoid.  If everything goes okay, looks like full recovery will take 5-6 weeks, which is consistent with everything Dr. Ching and Jennifer have said.

On the way back from the appointment my niece Alex reminded me Dr. Priya had mentioned that with some HER2 positive cases are treated with a drug for neo-adjuvent therapy.  This is why you bring others to your appointments; I hadn’t remember that tidbit or the name of the drug, but my niece did.  It’s pertuzamab, common name Perjeta.  We didn’t really discuss it because during the consult we didn’t know whether I was HER2 positive or not.  It was only after we’d left the office and were on our way out that Dr. Priya caught  me and let me know that Pathology had gotten back to her and told her my results.

When I returned home, I called Jennifer to let her know that Dr. White was fine, and that I wanted to go ahead with the “lump and lift.”  I then asked her about the Perjeta, and she informed me that the therapy had been approved for neo-adjuvent therapy when the tumor is 2 cm or greater, and had not yet been approved for therapy post-surgery.  There is no belief that Perjeta won’t also be effective post-surgery, but approval has not occurred yet.  Jennifer is going to send a message to Dr. Priya just to check, but at the time we’d discussed it Dr. Priya didn’t have all the information we now have.  My cancer is HER2 positive, but the MRI also “downgraded” the size from 1.93 cm to 1.7 cm.  I’m not sure I’d mentioned that previously.

Dr. White’s surgery scheduler was not at work today, so I suspect my surgery won’t be scheduled until Monday.  I really hope it will be no later than the 3rd week of January at this point.  Dr. White gave us his cell and home numbers, which I thought was great.  Was he wondering why I wasn’t asking more questions?  Worried that he hadn’t given enough information?  Or does he do that with all of his patients?

What’s up next?  A consult with the radiation oncologist on Tuesday.  It really is a team of people, a ton of  moving parts and so much information being thrown at  me.  I’m glad I’m off work right now, just so I have the time and space to process it all.


December 24, 2014

My appointment with Dr. Ching, my breast surgeon, did not exactly go as planned, but in a good way.  I was to go over the MRI report with her, and then she wanted to do a biopsy of what she believed was a lipoma (common benign soft tissue tumor) on my left breast.

The report from the MRI showed that there was no cancer on my left breast, and the lipoma did not show up at all, which confirmed Dr. Ching’s belief that the growth was benign.  The cancer, however, lit up like a Christmas tree, both with and without contrast dye.  On the scans you could clearly see that “one of these is not like the other” as Dr. Ching said several times.  The MRI also showed 2 other, smaller growths which could either be part of the original growth, or the beginnings of a multi-foci cancer.  Either way, those will get removed during surgery along with the main tumor and sentinel lymph node.  One area of concern is how close my tumor is to the skin; depending on how much has to be removed to achieve clear margins, the proximity to my skin may be a problem.  Dr. Ching will be removing 1 cm over and above the tumor and the 2 other growths, so she’ll be removing at least 3 cm of tissue.

Next we discussed what might happen during and after surgery.  15% of surgeries are not able to get clear margins, which means a 2nd surgery.  I hope I’m in the 85%.  Post-surgery, I cannot move my arm for at least 2 weeks except to do 4 exercises.  No holding a Kindle to read, no knitting and definitely no computer work.  I guess I might want to sign up for Netflix streaming, and it’s back to doing routing tasks with my left hand.  I learned to use my left hand when I had right shoulder surgery, but with that surgery I could use my hand.  Not using a hand at all will be very interesting.

We discussed that even though I had a consult with Dr. White in Plastic Surgery on Friday about reconstruction, that I’d pretty much decided to have a “lump and lift” so that my breasts will be of more even size post-surgery. (The lift is to address “ptosis of the breasts” – sagging breasts.  Apparently I’ll be perky afterwards…)  I still need to find out all the information about the reconstruction, and to be comfortable with Dr. White, but assuming it’s a go after Friday’s consult, the wheels will begin to move to schedule the dual surgery (excision and reconstruction).  The disappointing news was that the surgery schedule is full for the first week of January, and already quite full for the 2nd week.  The earliest possible date is January 13, assuming the plastic surgeon is even available that date.   More likely the surgery will be the 3rd week of January.  I just want this thing out of me, plus the later the date, the later my full recovery.

Then I was prepped to have the biopsy.  After laying out all the instruments, and a little bit of a wait, Dr. Ching came in and started to sterilize the area.  Then she said, “wait, if you’re going to have the lump and lift, Dr. White can remove the lipoma when he does the reconstruction.  Let me see if he’s available.”  So she gets Dr. White, who does a short exam, and says he can remove it no problem, and that I was also a good candidate for a lift.

So that was it.  I got dressed, confirmed that the next time I’d see Dr. Ching is for the surgery and picked up a copy of my MRI report.   At least I don’t have to ice my breast for 10 minutes every hour for Christmas Eve!

December 23, 2014

Some good news, at last.  The results of my breast MRI show nothing untoward, so no more tests (other than the biopsy already scheduled) are needed.  So, unless there’s something going on with the left breast, my cancer, at this point, is just in my right breast.  I get to see the pictures from the MRI when I have the biopsy done on my left breast on Wednesday.

I got a referral to see the radiation oncologist, and am scheduled to meet with Dr. Lundahl on Tuesday.  Radiation seems so far away – I’m focused on the surgery first, chemo second, but it’ll be good to get an idea of what I’m facing after chemo.  When they talk about a breast cancer care team, they really mean it.  Lots of moving parts and people.

Ted (my husband) says I should credit breastcancer.org.  Indeed, it was the first website I visited when I received my diagnosis, and I started reading.  Not everything made sense, though, until after I met with the nurse education (Jennifer),  the breast surgeon (Dr. Ching) and the medical oncologist (Dr. Priya).

I’m beginning to tell more of my friends.  Of course they’re absolutely, fabulously supportive.  I requested knitted caps and hats from Nancy and Melissa, because I’m fairly sure I’m not going to get a wig.  I’m going to wear my cancer loud and proud as a reminder to all of my female friends to do your breast self-exams and get your annual mammogram.

December 22, 2014

Today was my breast MRI.  I had to have a CBC before the MRI to check for kidney function, because as part of the MRI, an injection of dye is given.  The dye helps show potentially cancerous breast tissue to show up more clearly.  Cancer cells need blood to multiply, and the dye contrast tends to be more concentrated in areas of growth.  If there are more suspicious areas, then more tests are likely.

I’ve had plenty of MRIs – 4 knee surgeries and a shoulder surgery were all preceded by an MRI. I’ve never had any discomfort, or felt claustrophobic.  This time, however, I felt like I was being cooked in a microwave.  I was sweating like crazy.  The other difference is that you’re face down, as if on a massage table.  The pressure is on your head, chest and stomach, which is an uncomfortable position for me.  The scanning takes about 30 minutes.  The dye injection was not a problem for me, but I did feel lightheaded when I stood up (you can’t eat or drink for 4 hours prior to the MRI).

By chance, I had the same technician who did my additional scans.  When she introduced herself, I told her that I remembered her.  She gave me a wry smile and said, and here we are.  I said, yes, here we are.  She said that I’ll probably see a lot of her now.  That means I have a few more breast MRIs in my future.


December 19, 2014

Your life is going well.  You have a great husband and marriage, furkids who bring you great joy, a loving family, wonderful friends, a job you love with people who are awesome, a career which is mentally and emotionally fulfilling, and volunteer work which keeps your heart full.  Your life is active, busy and you love it.

You do what you’re supposed to do, for the most part, to maintain your health.  You get an annual mammogram, and you are asked to return for more views.  It’s okay, the same thing happened last year and everything was fine.  It’s that darn dense breast tissue that causes problems.  So you go back for more views.  More views are taken, the radiologist views them.  You’re told that an ultrasound is needed.  The ultrasound is done, the technician tells you the radiologist wants to talk to you.

She tells you that a lump was found on your right breast which wasn’t there last year.  It’s irregular in shape, she says, and suggests a needle biopsy.  She can do it right now, if you like.  You opt to have it done, and then wait for the results.

Five days later, you get the call.  It’s cancer.

Since that call, my life has been turned upside down.  It’s been a whirlwind of appointments, tests, examinations, and decisions to be made.  It’s also been a time of even more tests, more waiting for results so more decisions can be made.  Here’s what I know.

The lump is 1.93 cm at its largest.  The cancer is invasive ductal carcinoma, which means the cancer is not contained in the milk duct, but has started to “leak out.”  The grade, or the “score” which indicates how different the cancer cells’ appearance and growth patterns are from those of normal, healthy, breast cells,  is a 2+ (out of 3).  This means the cells are moderately differentiated; they do not look like normal cells and are growing and dividing a little faster than normal.  It’s an indicator that the prognosis is intermediate.

Breast cancer treatment is designed for the long view – focused on minimizing recurrence.  It starts with surgery to remove the tumor and the sentinel lymph node.  These will be examined to find out more definitively about my cancer.  How far has it spread?  Can the surgeon get clear margins after removal of the tumor?  Once the final pathology is done on the tumor and lymph node(s), then the cancer is given a stage.

After surgery, the treatment to reduce the chance of recurrence starts.

My cancer is estrogen and progesterone receptor negative.  Some cancers are fueled by the hormones estrogen and progesterone, and if so, can be treated with hormone therapy.  One could say that being negative in this case isn’t good, because it means that I will need chemotherapy rather than hormone therapy.  On the other hand, hormone therapy continues for five years, so I’m choosing to think of this as a positive.

HER2 (human epidermal growth factor 2) is a protein; some breast cancers (1 in 4) make too much of this protein and therefore have too many HER2 receptors at the cell surface.  With too many receptors, the cancer cells grow too much too fast.  One treatment (Herceptin) is to block the receptors so the cells don’t pick up the growth signals.  My cancer is HER2 positive.  While a HER2 positive cancer is aggressive, my medical oncologist (Dr. Priya) assures me that chemotherapy is especially effective on rapidly dividing cells.

What’s next?  Because I have dense breast tissue, and because not everything can be seen via mammography and/or ultrasound,  I’m  having a breast MRI on Monday (12/22/14).  I’m also having a biopsy done on my left breast on Christmas Eve; upon exam, my surgeon (Dr. Ching) found what she believes to be a benign fatty tumor on the left breast, but she wants to be absolutely sure.  Then I have a consult with a plastic surgeon to discuss reconstruction options, which are done right after Dr. Ching removes the tumor and lymph node(s).  Surgery will be scheduled; recovery will take 4-6 weeks.  Chemotherapy starts after recovery; I’ll have 2 types.  The regimen to address my hormone receptor negative status is an infusion once every 3 weeks for 4 cycles (12 weeks); Herceptin can start as the same time as the other chemo, but that’s once a week for 52 weeks.  Yep, 52 weeks.  An entire year.  And then sometime I’ll have radiation.

I’ve told my family, and of course they’re very supportive.  My sister and niece have come with me to my appointments – breast cancer educator, breast surgeon, medical oncologist – and I’ve started to tell friends.  I’ll wait to tell my staff until I know the date of my surgery, but it seems likely that I’ll be home recovering from surgery for 3-4 weeks.  It could be that the surgery is more extensive, depending on what the MRI shows, on what the left breast biopsy shows, on what the surgeon finds when she excises the tumor.  If you’re uncomfortable with uncertainty, this is not a good time.

[This blog post is the “front page” – all other posts are in reverse chronological order, so if this is your first time here, scroll to the bottom and read up.]