Archive | June 2014

Finally – a win!

After weeks of uncertainty, we got the results on June 26 that the lymph node FNA biopsy results were negative – the cancer had not spread to the lymph nodes!

The day before, we received the MRI and mammography results that confirmed there was inflammation in the left lymph node consistent with metastatic disease.  What does that mean?  Does it mean it definitely has cancer cells?  Does it mean it’s inflammated like a cancerous lymph node would be, but we don’t actually know what’s causing the inflammation?  Apparently it was the latter.  The node was “suspicious” – an entirely useless word that provided no clarity on the stage of my cancer and the resulting treatment plan.  Only the biopsy would be able to provide concrete results on the lymph node status.  The MRI was only useful to provide indication of whether there might be a tumor elsewhere in the breasts or something suspicious going on with the node.

Finally, the clarification had been made.  We all had been anxiously awaiting all day for the lymph node FNA biopsy results, but when evening came it was looking more likely that we wouldn’t find out until the next day.  I pinged Dr. G to see if she had heard anything.  First response indicated the lab was closed and she would follow-up tomorrow.  Soon after though, we got another unexpected response saying the pathologist had been working late and the results are in – negative!  The celebration began.  High-fives, hugs, call, text messages, WhatsApp messages were rapidly exchanged with family and friends.  Finally – a win – confirmation that we’re dealing with Stage 1 cancer.  The risk of spread has been minimized and a less toxic treatment plan is on the horizon 🙂  Whoo hoo!!

Who to trust with my medical case?

Though my testing to date had been at CPMC, we heard repeatedly that it is best to go to teaching institutions for these types of cases since they are on the more cutting edge of research.  The main question though, was do we get our care at UCSF or at Stanford?  UCSF has an experienced, leading medical oncologist, Dr. R, who focuses on TNBCs, while Stanford has a less experienced, but well reputed oncologist who specifically focuses on BRCA carriers with TNBCs.  There are so many factors to consider when deciding where to get your care:

  • The breast cancer medical oncologist you’re most comfortable with (critical when doing chemo before surgery)
  • The breast surgeon you’re most comfortable with (likely to be the team quarterback if leading with surgery)
  • The plastic surgeon you prefer (key player if doing a double mastectomy followed by reconstruction)
  • The recommended treatment plan you prefer (levels of aggressiveness vs. toxicity; access to clinical trials)
  • The responsiveness and efficiency of the institution and medical care team (active on email, fast turnaround for testing appointments and results)
  • The logistical dynamic of the institution and how stressful or relaxing you find the ambiance (commute time, parking, hospital’s environment – may sound petty now, but is unnecessary added stress, especially when going in for weekly treatments)

On June 24, we had our consult at UCSF where we first met with breast surgeon Dr. A, then Dr. R.  Logistically, it was a frustrating experience.  What should have been a 1.5 hour appointment across the two doctors, we were at the hospital for four hours – most of which was spent waiting either in the reception area or in the hospital for the doctors to come.  Then there was another ~20 min of waiting time as the valet needed lots of time to bring the car back.  While waiting for the doctors, we never had a good sense of when they might come in – should Ash step out to pick us up some lunch?  Should he cancel the important work calls he had scheduled since the appointment was supposed to have been done by now?  In the end though, we did really like Dr. R.  She came into the room with this large presence that made me like her rather immediately.  We discussed my case and different treatment options – she definitely used terminology just assuming we know what it means, but given the levels of research we had been doing to this point, we were able to follow along quite easily.  Similar to Dr. WW, her suggestion of treatment plan options was also dependent on lymph node status.  While for Dr. WW the status influenced whether surgery first was an option, for Dr. R, chemo first was guaranteed and the question was what combination of drugs to pursue – ACT+Carboplatin if lymph node positive or just Taxol + Carboplatin if lymph node negative.  That’s a two month difference in the duration of the chemo plan and significantly different in the intensity of the side effects.

So once again, it all comes down to the lymph node status.  Sooo frustrating there’s such a delay in getting the procedures done to figure that out!!

 

To wean or not to wean

As I mentioned before, I knew I would eventually have to stop breastfeeding before starting chemo.  Given how much uncertainty there still was in terms of our treatment plan though, I figured I’d still have plenty of time.  There is something psychological, however, about breastfeeding your child when you have breast cancer.  I was repeatedly reassured that it’s medically fine, but I had still shifted to only nursing out of my right side.  I then learned though that I would have to pump and dump for up to 48 hours following the MRI given the contrast agent they would have to inject into me.  While it was earlier than I had expected to wean, I knew it wouldn’t make sense to pump and dump for 48 hours just to nurse out of one boob for a few more days.  So, in parallel to all the discomfort I was enduring with the testing, I now got to add weaning and engorgement to the list.  I was walking around with chilled cabbage leaves in my bra to slow down the milk production.  I was holding ice packs to my chest in the car between appointments.  I was returning home exhausted only to have to start up the pump for a few minutes to relieve the soreness.  Fortunately, my daughter was young enough that she didn’t struggle in her transition to the bottle.  After having nursed my first daughter for over a year, my second daughter would be formula fed.  I am thankful for the two weeks I was able to nurse her for, and believe the nutrients she received during that time were better than none at all.  Many mothers can’t, or choose not to, breastfeed for a variety of reasons, and their formula fed babies turn out just fine.  I know my little darling will as well.

Recovery time? Never heard of it.

A whirlwind of tests and research ensued.  Dr. G informed me that an FNA is not as accurate when it comes to assessing various tumor characteristics such as grade and hormone receptor status.  More imagery and a more invasive biopsy would be necessary as soon as possible.  On June 17, I got a mammogram, left breast ultrasound, and ultrasound guided core biopsy of the tumor at CPMC’s Breast Health Center.  We took Mira along so I could nurse between appointments.  I knew I had to wean eventually, but why rush it earlier than needed.

Other than tumor size, assessing whether the cancer has spread to the axillary (i.e., armpit) lymph nodes is a key factor in determining what stage the cancer is at.  My tumor is only ~1.5cm, implying Stage 1, but if the cancer has spread to the lymph nodes, we’re looking at Stage 2.  Still totally curable, but suboptimal from a relative prognosis perspective.  The mammogram identified an enlarged or suspicious looking lymph node on the left side.  There could be a variety of reasons for this enlargement – my recent c-section, breastfeeding, or even a reaction to the left breast FNA that occurred about a week earlier.  For this appointment, however, focus was resumed on just the left breast and the core biopsy was conducted.  This was being conducted in more of a hospital setting by a radiologist, but still involved only a local anesthesia.  A thicker, hollow needle would be used to extract actual samples of the tumor.  Just as with the ultrasound guided FNA, it was quite strange watching on the monitor as the needle penetrated through the breast tissue and made its way to the tumor.  Several samples had to be taken and the needle device made a loud clicking sound each time it captured a sample, but I felt no pain, just pressure.  I later asked to see the samples that were now floating in some container and they looked like very small, pinkish/white, tube-shaped pieces of tissue.  So that’s what my cancer looks like.  The core biopsy required a bit more after-care than the FNA.  It didn’t help that I was lactating and my boob now essentially had an open tunnel going from the inside up to the surface of the skin.  TMI alert – yes, that means some milk actually came out from the needle’s entry point.

Dr. G had coordinated for me to have a consult with CPMC’s medical oncologist Dr. WW, whom I met with on June 19.  We covered a variety of topics:

  • how the prevalence of breast cancer among the general population is 12% vs. ~80% for BRCA carriers
  • the local vs. systemic treatment options for breast cancer
  • the details of my tumor per the FNA
  • the different treatment options and how his recommendation would vary based on the lymph node status and the results of an MRI

He indicated that the “standard of care” for breast cancer chemotherapy is ACT (4 cycles of bi-weekly adriamycin + cytoxan followed by weekly taxol), but that many recent studies supported the effectiveness of carboplatin in treating triple negative breast cancers.  So, he recommended I include carboplatin in my treatment while taking taxol.  He believed if the lymph nodes are positive, we should start with chemo, but if they are negative, we have the option to do surgery first.  Given the importance of the lymph nodes in determining stage and treatment plan, I wondered what the plan was to confirm whether they are positive or not.  How is that appointment not already scheduled – especially if the mammogram had already indicated the left node was swollen and there’s risk of it having spread elsewhere in the body if the node is actually positive??  CPMC still hadn’t scheduled the MRI because they were awaiting insurance authorization – seriously?  I told them I would personally take on financial responsibility if insurance would not cover it since days were passing by based on insurance bureaucracy.  Ultimately, they found out insurance authorization isn’t actually required and the MRI was scheduled for June 23.  So far away!  In parallel, I found out an MRI would largely tell me if the cancer has spread elsewhere in the breast and if there’s anything suspicious in the lymph nodes.  Only a biopsy would really confirm what’s going on with the nodes.  The obvious natural question – why didn’t the radiologist just biopsy the enlarged lymph node when doing a biopsy of the breast since a suspicious node had already been identified in the mammogram??  Dr. G indicated that radiologists are sometimes not as comfortable doing a biopsy of the lymph nodes given they are harder to reach, so she’ll conduct an FNA of the lymph node herself.  She’s traveling for a few days though, so the earliest she can do is the morning of June 23 (coincidentally prior to my MRI).  Great, so a cancer is going to continue to grow in my body because a radiologist is too incompetent and a surgeon is too busy.

The FNA of the lymph node appointment was a bit awkward.  It was again ultrasound guided so I could see the needle moving through the tissue towards the node, but Dr. G definitely appeared to be struggling to get a straight-line shot to the node.  The needle was going in and out as she worked to navigate towards the node.  She eventually indicated she thought she got the cells she needed, though it wasn’t too comforting when she then indicated that we can always do this again if the lab comes back saying she didn’t get a good enough sample.  By the way, if my lymph node was enlarged before, it’s probably now even worse after all the agitation it just endured.

We then made our way to CPMC’s Pacific Campus for the MRI.  This was a painless procedure – or should have been anyways.  I forgot that I would have to be lying down on my stomach the entire time.  To clarify, be lying down on my c-section incision the entire time.  I was incredibly socially awkward trying to figure out how to even climb up on the hospital bed and lie flat face down.  It’s amazing how you don’t realize how much you use your stomach muscles, until you realize it hurts to try to use them.  Climbing back up after the MRI was just as ungraceful.  It required all the physical energy I could muster and I was completely drained by the end of it.

In parallel to this past week of testing, we were full force in research mode.  We were moving forward with CPMC in the meantime since tests were underway, but we still needed to identify the right treatment center and care team with which to entrust my case.  When I wasn’t traveling around between appointments, I was often on calls with folks helping us research the best doctors at UCSF and Stanford and getting us access to them.  We would be getting our second and third opinions from them over the next coming weeks.

It’s mindblowing to think about how I was only ~2 weeks out from my c-section.  At a time when I should have been getting lots of rest, not over exerting myself, and lying down as much as possible, I was instead going all over the city from appointment to appointment getting poked and prodded.  This was definitely not a normal recovery time.  Then again, nothing about this time was normal.

Sharing the news

My mom kept saying that it will be OK – that I’m strong and we’ll get through this together.  I also felt it will be OK, but I was filled with sorrow for what Ash and maybe even the children would have to go through along with me.  Mom asked if we should call Ash and Dad and ask them to come home, but I thought why bother, let them enjoy their day while they can.  We were scheduled to have my entire extended family come visit us at home the next day to meet Mira – again Mom asked if we should cancel that – but again I thought why bother, we must continue living our lives.

It was soon after that Ash, Dad, and Diya came home.  Diya was exhausted from her day of fun and immediately went down for a nap.  Ash came to Mira’s room where mom and I were and I smiled and enthusiastically asked about his day.  I didn’t want to drop this bomb on him right as he walked through the door.  He sat down on the bed next to me to share stories from their fun day, but then immediately noticed my eyes.  “Have you been crying?”  Mom excused herself from the room and I grabbed ahold of Ash’s hand.  “What is it?  Did you hear back from the doctor?”  The panic was rising in his voice.  I looked in his eyes and as calmly and composed as possible, shared the news – “I have breast cancer.”

His reaction was immediate, honest, and heart-breaking.  “What??  This is so unfair.  I can’t do this without you!”  After all, his own birth mother had passed away due to breast cancer at the exact age of 31.

I didn’t know what to do except hold him, comfort him, and let him know that it will be OK.  “It’s going to be fine – you won’t need to do anything without me.  The next few months will be tough, but I’m going to be fine.”  I’m going to be fine.  I have to be fine.

The Big C

After several extremely stressful days, we finally heard the news that Mira was ready to be discharged from the NICU the same day I was to be discharged from the hospital.  YEA!!!  She had stabilized, was breathing on her own, and all her tests had come out negative.  Out of process of elimination, the doctors concluded the respiratory distress must have just been a transitional adjustment.  It would have been helpful to have first heard that it’s most likely just a transitional thing and we just want to run some tests to rule everything else out, rather than them leading with the worst case scenarios like they did.  Regardless, we were just thrilled that she was healthy and we were finally able to put this nightmare behind us.  We were discharged on Wednesday, June 11.  All that work at CPMC to nurse Mira on-demand and push back on the over-pumping had paid off and the breastfeeding was going smoothly.  That in itself changed the entire experience of having a newborn at home.  I would look at Mira and realize this is about as easy as it gets with a child – sure, I wasn’t getting much sleep, but the baby just needs to eat, sleep, and poo.  She didn’t yet know the word “no” and every conversation was not yet a negotiation.  The same could not be said about toddler Diya.

The next couple of days were amazing – I felt truly happy.  Our family was complete.  Our precious Mira was home and healthy.  Diya was being a loving big sister (or “big didi” as she likes to say).  Ash and I were conquering man-on-man defense.  We had heard from several friends and family members how difficult having a second child is and how our social life would soon be over.  In the moment, however, we truly felt like we were holding it together quite well.  It was Saturday, June 14 and Mom and I were home resting and taking care of Mira at home, while Ash, Dad, and Diya were out celebrating an early Father’s Day at the local fair after going to music class.  Life had resumed to normal just week one after Mira had been born and we began the most stressful week of our lives.

Normalcy did not last for long.

It was that same afternoon that I got the call from Dr. G.  We all had been awaiting the results of the biopsy.  Thursday had come and gone, and so had Friday, but we had told ourselves that “no news is good news.”  I knew right away that wasn’t true as soon as the breast surgeon herself called me on a Saturday.  “Unfortunately, the mass is malignant after all.”  Strangely, I was very calm when I first heard the news.  I looked to my mom who happened to be in the room at the same time and was awaiting some indication as soon as I announced it’s the doctor – I mouthed “cancer” as I continued to listen to Dr. G.  I turned the phone to speaker and somehow was having a very matter-of-fact conversation on what this means and what needs to be done.  I have an early stage invasive ductal cancer.  Specifically, I have triple negative breast cancer (TNBC) that is an especially aggressive form.  Treatment will likely involve 4-5 months of chemotherapy followed by a bilateral mastectomy given my BRCA history.  I continued to be composed, taking notes, asking questions.

“Obviously, this means you will need to stop breastfeeding soon.”

That was when I first started tearing up – after everything – I would not be able to nurse my daughter.  It was strange – when I probably should have been upset due to a fear of death – I was instead upset about being deprived of nursing my newborn for a full year like I had my first.  Maybe it was because I knew everything would be OK with me – it had to be, I had too much planned for the future.  Any alternative scenario was unimaginable.

I finished the conversation, thanking Dr. G for reaching out, even on a weekend.  As soon as I hung up, my mother hugged me, and I broke down.  She was being strong for me, but I couldn’t stop the tears.

Birth to biopsy

The baby didn’t wait.  Unexpectedly, my water broke on the night of June 6 and Mira was delivered via c-section on the morning of June 7 at MPHS.  Unlike with my first c-section with Diya, this time we felt anxiety-free excitement.  I had had a normal pregnancy and was experienced with a c-section, there was nothing to be concerned about.  The surgery went smoothly with Mira entering the world with a strong pair of lungs and a full head of hair, with the instrumental sound track to Dil To Pagal Hai playing in the background.  She passed her APGARs with flying colors and was assessed to be in great condition when she joined me in the recovery room post surgery.  Her and I enjoyed nearly an hour and a half together with her successfully nursing and peacefully sleeping.  I noticed some grunting noises, but the nurse seemed unconcerned.  It was only when the nurse was adjusting Mira’s clothing back in the crib that she noticed how her stomach was contracting.  Rather than inflating upon each breath, the sides of Mira’s stomach were contracting inwards as if she was gasping.  Our nurse calmly called the nursery and mentioned she’d like to bring Mira back to have her breathing re-checked.  I was rolled back to my hospital room, where the family was waiting, and told Mira would join me there soon.

It was a joyous mood in the hospital room – everyone couldn’t wait to meet Mira, take family pictures, and hold a “birthday party” for Mira that Diya was long awaiting.  When 15 or so minutes had passed and we’d received no update, Ash went to the nursery to check in.  He later returned completely distraught – there had been 4 doctors surrounding Mira in the nursery, holding an oxygen mask over her face, when he had arrived.  She was struggling to breath and needed to be intubated for breathing support.  MPHS lacked the acute care they felt she needed and she would need to be transported via ambulance to CPMC (where Diya had been born!) as soon as they inserted all the necessary IVs into her.  The doctors said she would need an EEG to confirm her brain is properly sending signals to her body to breathe, an echo to confirm there aren’t any cardiac related issues, and other tests to confirm she didn’t have an infection (though they would be preemptively giving her antibiotics in case the cultures came back positive).  She was only a few hours old at this time and I didn’t even yet have feeling return to my feet.  How could what had been such a normal pregnancy go so terribly wrong post delivery?

Mira was brought into the hospital room for a brief visit before going into the ambulance, but she had so many wires in her and was inside a formidable looking box surrounded by oxygen tanks, nobody got that great of a look.  No chance for family pictures, and definitely no chance for a birthday party.  This was not the celebratory experience I had envisioned.  Ash and Mira took one ambulance to CPMC, and soon after, my mom and I were in another ambulance being transferred to CPMC (after the doctors had initially told me I couldn’t be transferred – there was no way I was going to be separated from my baby!).  After an unbelievable journey of first being taken to the wrong CPMC campus, then being rolled into the wrong building within the right campus, then the EMTs not knowing which room I should be taken to, I was eventually rolled into a room about a quarter of the size of my MPHS hospital room.  Mira was admitted directly into the NICU where she began days of monitoring and testing.  Fortunately, she began breathing on her own and the doctors later removed the breathing tube.

I had had great difficulties nursing Diya in the early weeks and I’m convinced it was due to CPMC forcing me to pump right from her birth.  With Mira, I was determined to approach breastfeeding my own way with minimal pumping and lots of on demand feeding.  Given I was still unable to walk from the surgery, Ash would wheelchair me back and forth from the NICU throughout the day and night to nurse.  Mira was latching well and I was optimistic about how nursing was going, but it never hurts to speak with a lactation consultant.

It was now Monday, June 9, the day I was supposed to have a breast ultrasound at MPHS.  Clearly I would not be making it to that appointment.  I mentioned the lump to the lactation consultant and she agreed that once the milk comes in in the next day or two, it may be harder to feel the lump.  Time was of the essence to get this ultrasound done.  The OB-GYN who was on called pulled a few strings and got me an appointment with a breast surgeon (Dr. G) at CPMC itself for that afternoon.  I squeezed in one more nursing in the NICU and then Ash rolled me in my wheelchair through the underground tunnels of CPMC to the breast surgeon’s clinic in the adjoining building.  As I sat in the waiting room, still in my hospital gown, I was more focused on getting this appointment done and getting back to Mira before she starts freaking out for her next feeding.

Dr. G and her fellow felt the lump and confirmed its existence via ultrasound.  They felt a fine needle aspiration (FNA) biopsy was necessary to confirm whether it was anything to worry about.  As they began prepping for the biopsy, we got the call from my mom saying Mira was awake and screaming – where were we and when were we returning?  We didn’t share the news about the lump with my parents at the time since we all had enough stress on our mind with Mira’s condition, and why worry about something that is likely just a clogged milk duct?

The biopsy itself was reasonably painless.  The initial needle for the local anesthesia, and the slight burning feeling that followed, was the worst part, and even that wasn’t too bad.  A very thin needle, similar to one used for a normal blood draw, was then used to extract cells from the mass (unlike a core biopsy where actual pieces of the tissue are extracted).  There was one point where I felt a very momentary sharp pain during one of the extractions, but after they then added a bit more local anesthesia, I felt no other pain.  Upon completing the biopsy, Dr. G indicated that the texture of the mass felt soft to her – more indicative of a milk duct / benign mass than anything malignant, but that she should know the results by Thursday.  I remember looking at Ash at that time and hearing the huge sigh of relief and seeing the relieved smile cross his face.  Comforted by the notion that everyone seemed to think it was just a pregnancy-related milk duct issue, we rushed back to the NICU to attend to our screaming baby.  I began nursing her immediately, the band-aid from my biopsy still showing.  (Dr. G had confirmed it’s fine to continue breastfeeding).  I updated my mom at that time with where we were.  Strangely, tears filled my eyes when sharing the news, even though all I was trying to convey is that the doctor feels confident it’s nothing to worry about.  I don’t know what I was so emotional about, but I guess I had recently delivered a baby…

Sure enough, the milk came in soon after and I could no longer even feel the lump.

Umm…is that a lump?

On June 4, 2014, I was nearly 38 weeks along in the pregnancy for my second child.  We were at the hospital for an ultrasound and Doppler reading to follow-up on a concerning growth measurement that had been identified in an ultrasound earlier that week.  We were nervously awaiting the doctor’s return so she could confirm whether or not this baby was demonstrating late onset IUGR (intrauterine growth restriction) just as my first daughter, Diya, had.

As I’m lying there, scratching my chest in response to what I can only attribute to a weird pregnancy effect, I felt what I had been dreading for two years.  It was in June 2012 that I received the news that I’m BRCA1+, a genetic mutation that greatly increases one’s risk of developing breast cancer.  It was only several months ago that I wondered what a lump would actually feel like and whether I would know if I felt it.  A quick google search at that time had informed me that it could feel like a pea-shaped mass.  Here it was – exactly how google had described.  I asked my husband, Ash, if he felt something, and sure enough he did.  I tried to stay calm, explaining to him that it’s probably just pregnancy related lumpiness.  He insisted that we go see my OB-GYN immediate following this appointment.  I could have seen myself telling him to relax and I’ll just ask her about it in my regular weekly check-up the following week, but coincidentally enough, the nurse there had forgotten to return my insurance card to me at my appointment the previous day, so I planned to go to the clinic that afternoon anyways to retrieve the card.

First things first though, we were still awaiting the results of the baby’s ultrasound.  After the doctor came in, redid the measurements, moved us to another room to redo the measurements again with a machine she was more comfortable with, we finally received the good news that the baby’s growth was on track after all.  Finally a pregnancy with no complications – yea!!  We then rushed off to my OB-GYN’s office with no appointment and asked to see the doctor.  Being as amazing as she is, she came to the lobby, heard my concern, and escorted me straight into an exam room to be checked out.  She too felt the lump, also hypothesized it’s likely just a pregnancy related milk duct, but suggested we get a breast ultrasound done anyways given my genetic history.  I scheduled a breast ultrasound at MPHS for Monday, June 9 – plenty of time before the June 18 date of my scheduled repeat c-section.