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What do we say to cancer?

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The first steps down this path

The below is an overview of my cancer journey as of 5/15/19.  From here on out I'll write update posts, any questions or reactions are welcomed.  I'm organizing this post by the questions people tend to ask me - hopefully it answers them!

TLDR**: I found a lump during a self-exam in April > a biopsy confirmed a combination of non-invasive and locally invasive breast cancers > the imaging shows a large tumor that hasn't spread to the rest of my body so the prognosis is "treatable/curable" > I will need a mastectomy and hormone therapy plus radiation or chemo to prevent recurrence > I am weighing multiple NYC cancer centers and am doing more imaging and consults to decide, this will take another week > then surgery or chemo will be quickly scheduled

**Mom: this means "too long, didn't read", written for the people who glanced at the below length of text and decided nah.

How did this all start?

As stated in the TLDR, I found a lump during a self-exam in April 2019.  Earlier in the year, I had been regularly seeing doctors for a handful of symptoms which seemed possibly unrelated: drastic weight loss, high white blood cell count, GI issues, new food allergies, and a chest rash.  Which of these are related to breast cancer is still up for debate, but in whole they signaled that something was off with my immune system.  My PCP sent me to a couple specialists for acute treatment, then in March diagnosed me with depression when my weight had not improved, and prescribed me Prozac.  I rededicated myself to a healthy lifestyle, kept searching for answers, and never ended up using the anti-depressants.  Taking good care of my body allowed me to identify something that was subtly wrong.  I was now eating all homemade healthy food (no wheat, no dairy, no alcohol), exercising nearly daily, drinking lots of water, sleeping 8 hours per night, and meditating. But, I still felt fatigue and a sort of tightness/pressure on the left side of my chest, with the occasional sharp pain.  This impelled me to the self-exam, remembering that I had months ago thought I felt something but it seemed to be part of the regular somewhat bumpy breast tissue.  Having no history of breast cancer in the family and being only 32, I didn't seriously suspect a tumor. 

This time I was more careful in my exam, and since I had lost so much weight (I was 95 pounds down from 115), the lump was more obvious.  I booked an OBGYN appointment, she confirmed that she felt it too and sent me for a mammogram and ultrasound.  The radiologist was able to see that this was cancer, and had my doctor contact me about scheduling a biopsy. A few days later, 4/15/19, the imaging report was released in the online patient portal, and I was able to see their high confidence in a cancer diagnosis which I had not been aware of from my brief phone call with my doctor.  I don't believe the doctor meant for me to find out that way, but she had not realized that I would be privy to that level of detail in the patient portal.  While radiologists can make mistakes, giving it a BI-RADS 5 classification is correct about cancer 95% of the time, which I knew when I read the report.  The biopsy would provide certainty. 

My mom flew out that night, and took me to the biopsy the following day.  Dad flew in a couple nights later, and they were both here in NYC as I was given the final word from my new [and fantastic] PCP, that the biopsy was positive for breast cancer.  He had all three of us come in to go over the results and plan for next steps.

What is the diagnosis exactly?

The pathology identified this tumor as Invasive Ductal Carcinoma In-Situ.  DCIS is a common type of growth, and when caught early, usually only by mammogram and not feel, it is debatable as being considered "cancer" (Stage 0).  But mine seems to have been growing for a while, and has invaded the local breast tissue outside of the duct for a total infected area of about 5-7 centimeters.  The tumor includes some calcifications, which is the lump I felt, and has grown towards my pectoral muscle, explaining the mild yet constant chest pain and pressure I feel.  Further imaging including a CT, MRI, bone scan, and heart ultrasound showed no evidence this has metastasized anywhere in my body, and my lymph nodes seem unaffected.  Hearing this was fantastic news, since it means the disease is highly treatable with surgery and oncological management.  In short, it may cost me some time and money, but I have no reason to expect this to cost me my life. 

What's next?

I'm currently in a whirlwind of getting additional tests, weighing multiple cancer institutions, and freezing my eggs in preparation for potential chemo.  I've had many visits with Columbia, NYU, and Memorial Sloan Kettering cancer centers.   All three agree on the type of surgery required, a unilateral non-nipple sparing mastectomy, but Columbia wants me to complete other treatments first.  NYU/MSK start with surgery and then with the information gathered, the oncologist can make the call on what types of medical management is needed after.  Columbia, on the other hand, is part of a nationwide clinical trial for pre-surgery chemo drugs that they want me to join.  The immediate survivability isn't different here.  The crux of the issue is whether I believe the clinical trial has at least potential to help me in the long run (i.e. not seeing cancer return 20 years from now).  The trial uses drugs which are already FDA approved for other cancers, so the risks are fairly known.  Downsides are more travel, scans, biopsies, additional side effects, and no guarantee of results. I've reached out for a lot of advice in this area and despite not being a doctor myself, I feel confident in my ability to choose the right team and treatment plan.  No one proposes options that won't work, so it's based on what I think is right for me.  In regards to the delay, all of the physicians have said it's more important for me to pick the right team than to act immediately.  A month or two to get the right plan in place should not affect outcomes.  The final call will be made after my visits on Friday 5/17, as I will have some test results back from a second biopsy which will help evaluate if the trial drugs will be effective on this type of cancer.  From there, either surgery or pre-surgery chemo will be quickly scheduled.  

What's egg freezing and why are you doing it?

Many chemo drugs are known to wreak havoc on the reproductive system, so it's recommended to take steps to preserve fertility now.  It's likely that my fertility will return a few years after treatment is over, but that isn't guaranteed and my eggs will still be aging in the meantime.  The solution here is to retrieve and freeze as many eggs as possible for future fertilization and implantation.  I went to a reproductive endocrinologist and after a few scans and blood draws to confirm timing, I started the process.  It entails 10-12 days of daily home hormone injections in order to cause the ovaries to produce multiple eggs at once.  Then when they see the follicles well developed on an ultrasound, a "trigger" shot is given, and 36 hours later is an outpatient procedure to retrieve the eggs for storage in liquid nitrogen.  It's actually pretty cool.  I was a bit anxious about giving myself injections, but it turned out to be easy and nearly painless. 

What about work?

For now, I'm on FMLA (medical leave) and short-term disability to allow me to get healthier and gain some weight before any treatment starts, and then for the surgery/chemo/recovery itself.  This has been great since I've had around 8-10 visits each week for the past month and often have to set them up last minute.  Not to mention the hours of scheduling calls, sending results to every provider involved, researching the disease and medicine itself, organizing my organizational systems, asking for advice from all my medical contacts, keeping a healthy routine (now including intermittent fasting), daily parental updates, and keeping my social life/hobbies.  It's a lot! Even without work, my days seem as busy as ever.  I have up to 6 months of paid, protected leave, and I'll use as much of that as I need. 

How are you holding up?

To put it bluntly, exactly how I would expect myself to hold up in this situation.  My significant daily efforts make me feel in control, positive, and solution focused.  But early in the mornings, or when my day gets quiet, a bit of fear and sadness creep up.  Mostly from worrying about the physical difficulty of treatment, the removal of part of my body, and that potential recurrence will always loom.  But the negative moments are fleeting.  I acknowledge and accept them but don't dally there.  I've already learned not to trust my fear.  Not one of the procedures I've had so far has been as bad as I thought it would be.  After those first tough two weeks of knowing I had cancer but not knowing how severe it was, dealing with the treatment doesn't seem so bad.  I'm eminently thankful that my prognosis is good, and frankly, nothing else really matters. 

The personal maturation from an experience like this can be positive too.  There are small wins like no longer fainting during IVs (and handling self-injections like a champ), to bigger moments of confronting my feelings on if I'm happy with the choices I've made in life, or what I would do if I knew my time would be cut short.  Nothing like a health scare to catalyze introspection. 

The amount of social support I have received is staggering and life affirming.  To everyone who has reached out by texting, calling, sending flowers or cards, coming over, inviting me out, or even flying across the country to see me, thank you from the bottom of my heart.  While this has already been a taxing period in my life, and treatment hasn't even properly started yet, I know I can get through it (in the words of the Beatles or even better, Joe Cocker) "with a little help from my friends".   I feel so lucky that my life has intertwined with each of yours, I couldn't ask for more thoughtful or jovial people to have connected with.  Thank you all for existing and for caring that I do.  You da you da best. 

 

 

 

 

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