Friday, February 1, 2019

We're Gonna Need a Bigger Boat, Part 1 of 2

Happy Friday to you Dear Reader.  It's a gray day here in the Bay Area; another large storm coming our way tonight.  I can't complain given what I've seen in other parts of the country!  Brrrrrr.  Frozen-geddon!!!!  With all this rain we've had, especially after years of drought, my backyard lawn looks like a golf course green at Pebble Beach!

Today I thought I'd tell you about how it was discovered that I am having a recurrence and diagnosed with metastatic breast cancer.  It seemed to start revealing itself in 2018, when my tumor markers had a slight increase.  What are tumor markers you ask? When you have a history of cancer, you continue to see your oncologist on a regular schedule.  With me, it was every six months.  Prior to each appointment, I'd have to have blood work done which usually consists of the following: a CBC or complete blood count metabolic panel, tumor markers, and Vit D blood serum level.  Tumor markers are specific proteins detected in the blood that may or may not be a sign that cancer cells are present.  Some people have tumor markers.  Some people don't.  High markers don't always mean the presence of cancer.  Low markers don't always mean cancer isn't present.  Some oncologists don't use tumor markers.  Mine does.

We noticed early in 2018 my tumor markers had a slight increase. They should be no higher than 25, mine were like 31.  They had never been elevated.  My oncologist thought we should go ahead and do a PET scan.  I was against it.  I've been very cautious about over exposing myself to radiation.  No one really keeps track of your radiation exposure through and beyond cancer treatment.  I had seven weeks of high does radiation during my first trip to cancer camp.  I was very conscious going forward about not over doing it.  Some oncologists use PET scans to do surveillance for cancer.  I guess they feel the radiation risks are outweighed by the ability to detect cancer.  Some integrative or more holistic oncologists are very conservative with scans due to the radiation exposure for their patients.  According to the American Cancer Society, the average American is exposed to 3mSv (millisieverts) of radiation from natural background sources, like the sun, over the course of a year.   A regular chest X-ray is like the equivalent of 0.1 mSv or 10 days of natural background radiation exposure.  A mammogram exposes a woman to 0.4 mSv, or about the same exposure of 7 weeks of natural background exposure.  Guess how much mSv in a PET scan, which is a full body scan?  It's 25 mSv, in other words, like eight years exposure to background radiation in one procedure.  I decided I wanted to be more conservative and just keep a watchful eye.  All my other labs looked great and I was having no symptoms.  Instead of coming back in six months, she wanted to see me again in three or four.  At that next appointment, tumor markers were up again to 41.

Fast forward to this last October; I had an unexpected day off due to a power outage at the winery I work at.  (Have I mentioned I work at a gorgeous Napa Valley winery at the top of Mt. Veeder?  Yeah I'm lucky like that.)  I was on my way to work when I got the news so I turned around and went home and wondered how I'd spend the bonus day off!  Little did I know I'd spend it in agony, positive I was passing a kidney stone.  Yikes, had them about ten years ago and yes folks they are brutal.

Make a long story short, when I had a CT scan of my abdomen and pelvis to confirm kidney stones, it not only showed I had a few small stones, but I was suffering from an acute diverticulitis infection. Oy vay.  Diverticuli are small pouches that develop inside the intestines, can be age related, and are rather benign unless a small abscess forms in one.  I hit the jackpot.  I was prescribed antibiotics right away,  and knew I'd be off work for a bit to recover, and also find out what to do about the kidney stones.  That wasn't the only things though noticed on the CT.  At the very bottom of the report on the very last page it was noted that I had some "osteoblastic bone lesions" and given my prior history of breast cancer, the pathologist noted it could be consistent with metastatic disease.

My primary care Dr. hadn't even noticed or read what the bottom of the report said.  It was never discussed in my initial appointment after the CT.  The focus was diverticulitis and the kidney stones.  When I followed up with the urologist's office about my kidney stones, they seemed hesitant to see me and it was conveyed to me that I should discuss my CT with my primary care physician.  Obviously the urology office had read the full report.

My primary care physician was out of the office the day I called to get a copy of the report myself.  When I read the whole thing, I couldn't believe how the pathologist had 'buried the lead' and disappointed to say the least that my primary care physician had not read the full report.  I was in shock.  I emailed my oncologist to tell her, but since I was already due to see her later that week I knew we'd get to the bottom of this.  The possibility I could have a recurrence of breast cancer after over eight years cancer free really sucked.  Not to mention, going from Stage 3 to Stage 4 is a leap nobody nohow ever wants to make.

When I did my labs prior to seeing my oncologist, my tumor markers were now 141.  Strangely enough, my Vit D level, which I'm such a freak about keeping high, was only 16!  What the hell?  Even lower than when I was originally diagnosed in 2010!!  I had been taking 5,000 IU D3 for some years after my first diagnosis, after finding out the relationship to immune health and cancer and a whole bunch of other bad things when your D level is low.  This just made no sense.  Was the diverticulitis to blame?  Had I not been absorbing the D for some time?

My oncologist didn't try to break it to me gently.  She knows I'm a 'get to the point' kind of girl, but she was like 'It's back.' I'm sure given her experience even without biopsy confirmation she felt certain that the cancer was back and had spread to bone.  (She was right.) I was trying to stay hopeful. Maybe these lesions are just old-lady-itis; I was turning 60 ya know and I had read sometimes bone lesions are benign.

I was scheduled for a PET scan, which is a full body scan where a special dye with radioactive tracers is injected into you, usually with an IV.  You're placed inside a scanner and theoretically if there is metabolic cancer activity, you should light up in the spots where cancer is present.

Say hello to my little friend.
At least now I would have definitive answers.  So what did my PET scan show?  All the same spots as already seen on the CT scan, but nothing lit up. Thankfully no spots showed up on any organs but  what the heck?  Why didn't I light up?  I've since found out that my particular cancer, invasive lobular carcinoma, often doesn't light up on a PET scan.  Looking back, I didn't light up my first PET scan either, when I had a 5 cm tumor in my left breast.  That bitch should have lit up like a bright star in a dark sky but nope.

On the PET scan the pathologist noted the same 'diffuse' bone lesions but once again reported no conclusive evidence of metastatic disease.  At this point the only choice was to biopsy one of the bone spots to conclusively determine if the cancer was back and spread, and/or a brand new cancer.  All of this was going on during Thanksgiving, which was also my 60th birthday.  I decided not to tell my sons or immediate family until I had a definitive answer.  FYI they all later scolded me for keeping it from them, even if I didn't have answers.

'Mom weren't not kids like we were on your first go round.  Promise us going forward you'll always tell us what's going on, even if you're on a wild goose chase.' I promised.

I decided to send an email to my plastic surgeon at Stanford who did my reconstruction, telling him of these events.  He suggested I set up an appointment at the Stanford Women's Cancer Center for a second opinion, and his office set up the whole thing for me.  I met with an oncologist there, and she also concurred a bone biopsy was absolutely necessary.  'Let's make sure what we're treating here.'

I did my best to prepare myself for the bone biopsy.  I've had several surgeries, glitches and all kinds of procedures; cancer ain't for sissies folks.  I've had a chest port cut and ripped out without anesthesia.  I've had to pack opening surgical wounds like a civil war soldier.  I've had my boobs scooped out and my tummy cut end to end to make new boobies out of my muffin top.  I mean, come on!

How bad could a bone biopsy be????


Marcia David said...

Thank you, dear Deb, for coming out about this. My heart is aching. Let the big time prayers commence. FUCK cancer.

Love you.

Toni said...

So sorry that you’re going through this my friend. The Stage 4 Club really sucks. But keep the faith, girl. Every single word you say has gone through my brain. When I was diagnosed, they told me not “curable”, but “treatable”, average life expectancy “3 years”. Quite the blow to this 48 year old! But found the right oncologist for me, who was going to fight for me as hard as she could. I’m 3 years in, and doing great! Will be going in for zometa infusions every four weeks....forever But I’ll take it! Meds and radiation have done their job. I get the whole “radiation” thing, but she makes me go for a CT and full bone scan every 5 months. Scans are showing not only zero cancer cells, but actually new bone growth in my spine, where the cancer was. This old gal who wasn’t going to make it, is growing some new bone! Woo hoo! Oncologist is super happy, but insists on keeping me on a super short leash. Risk of radiation outweighs the risk of not knowing. When this ugly beast rears it’s head again, it has to be caught quick! Sending you love and prayers! Keep sharing your story, honestly, when I was first diagnosed, your blog kept me sane. Sorry that you’re dealing with this, but know that you’re tough enough to beat it again! Keep smiling! ❤️

Anonymous said...

the beginning of another cancer journey... hope & pray this one takes you back home again, safe & healed... you are so tuned in and aware.... thanks for taking us with you!

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