Diagnosis Fallout: the week after first learning I had stage IV breast cancer

On the eve of Breast Cancer Month, which I shall only acknowledge with true stories of the struggles of stage IV cancer “metavivors” I will kick off with a letter to a team of oncologists at Valley Med in San Jose California nearly five years ago. I reached out to their group out of sheer desperation one week after I was diagnosed de novo. I wasn’t diagnosed prior to this because of my very dense breast tissue that’s indiscernible from tumors. Regular mammograms aren’t given until the age of 50 and most dense breast cancers are found between the ages of 40 and 50, and we have a much higher risk of breast cancer, too.

With that I present the letter that was answered by phone call with the offer of an appointment five months after I sent this letter via email, mail, and fax:

I write this hoping it does not fall upon deaf ears and plead with you for help and have nowhere to turn it seems otherwise…

I was admitted to Good Samaritan Hospital’s oncology floor last week after a late night in the emergency room and in the early morning of Tuesday the 25th at 1:00 am. At that time my primary physician and I concurred that the cause of my severe, and crushingly painful cramps after 18 hours of vomiting most likely was food poisoning. I was finally released this past Saturday the 28th of March late afternoon with a MedPort inserted in my chest, a diagnosis of stage IV terminal cancer that immediately requires treatment for a metastasized malignant tumor diagnosed by the oncology staff and based on a dozen or so tests.

Mind you I was seen by an oncologist, for just under five minutes after 6:00 pm Friday the 27th. The doctor stopped by and said he could not advise me, but did say I should take the “hormonal treatment path rather than the chemotherapy path,” but he could not be my oncologist. I’d already seen a surgeon and was “biopsied and operated on for a medical chemo treatment port.” He apologized and swiftly left my room.

The cancer is causing many problems and I’ve now reviewed all of my online records to find the state changed my coverage and without notifying me, however, I am allowed to receive care according to page 38 in the handbook for these types of situations without the consent or referral of a PCP. For approximately three days we were given the run around as I laid unfed, mainly ignored except by a few good RNs, and in pain. The administrative staff wanted me out and told me this was due to constant pressure by Valley Med to get “their patient” because I “represented their money.” This is no exaggeration.

I order to move things along I was provided surgery by Dr. Jeffrey Gutman (now retired) whose disregard for money overcame the hospitals’ greed, and set me on an expeditious path to treatment. Friday, after three days, CalMed informed me that my primary care organization through CalMed changed unbeknownst to me. Valley Med was my provider and Good Sam refused me any further treatment even though my partner explained he would be glad to cover any additional costs until the transfer to Valley. Good Samaritan declined his offer of cash, instead discharging me with a big bag of prescription medication on Saturday.

I required a referral from my Primary Care Physician. I no longer knew my doctors. This referral from my new PCP, the Indian Health Center, HAD to to come to Valley Med to receive any further care. Monday morning, March 30th, 2015, I telephoned and left messages with no response no fewer than five times. My friend drove me to the Indian Health Center at 2:00 pm where I was unknown and thus treated to a series of comical paperwork procedures. We were left sitting in a room with two armed body guards to oversee children with the flu, pregnant women, and several people in line for their prescriptions to various category II narcotics, and us. I was asked to fill in some forms after which we were taken to an unfurnished, nonmedical building next door to this very unsanitary facility. This place happened not to be a facilitator of healthcare but instead a gatekeeper of desperate patients in need.

I have tried everything and of course this stress is taking a toll on my declining health. I can only plead with you: Please do not turn your backs. My father passed away from brain cancer nearly three years ago and the travel to help him and take care of his final wishes as his medical custodian forced my unemployment and the immanent decision of using CalMed as a back up in case of emergency. That seemed a wise choice and having no communication from California or Santa Clara County (I’ve lived in the same address/ residence for six years and have my September 2014 insurance card) I’m beginning to wonder what false hope I stood upon to receive such an awful prognosis – both of my health and of the potential of proper treatment.

Please help me. I am swimming in red tape, prescriptions and simply cannot reach anyone to begin treatments which I desperately require.

Dense: Very Stupid Breasts Outsmart Early Detection

Have you also noticed a sharp increase in the number of tweets and other social media posts regarding the importance of early detection in early stage cancers? I noticed a huge rise in mentions of mammography and self exam as tools in the messaging as well. Perhaps it’s my overactive brain looking for data points. Somewhat like playing “punch bug” as a kid: looking for different colors of VW Beetles in snail pace creeping traffic to satisfy my need to punch my little brother in the arm. In this matter, pretend I’m my brothers arm and the fist punching me is early detection. If it is the best prevention of breast cancer then I have a very bruised arm.
“Oh look! Punch bug pink!”
Slam! (out of nowhere a knuckle fisted puch lands sqarely on my brother’s shoulder.)
“Ouch! That hurt!” He starts crying alligator tears.
“Shut up! You’re so dense. We are playing punch bug!”
“Mom she’s hitting me again!”

Presenting De Novo
In cancer language de novo, roughly translated from Latin, ironically a dead language, means from the start. With dense breasts, cancer can go years undetected by standard (and very painful if you’ve got dense tissue) mammograms and the occasional ultrasound. And my stage four metastatic breast cancer wasn’t showing up for years on radiologists’ radars because of dense tissue. I always got an inconclusive decision with regards to the results. But the fact is, not one oncologist looked at the ultrasounds. Furthermore, the radiology teams always used the excuse that they’re dealing with an inexact science and the outdated technology with which their profession works. Amortization of medical equipment takes many hundreds if not thousands of tests and at least 10 years. Technological rates of change by Moore’s Law standards means we are at a minimum five years behind and this is a generous estimate.

So when I “presented” at the hospital in 2015, the diagnosis left me nonplussed. At 4:30 am a doomsday call went out from a nurse in the ER to my overtired, shower-deprived husband. He was asked to return to the hospital immediately and to come to the oncology floor. When he arrived we both sat wide eyed and exhausted from the day’s events waiting for the punch in the arm.

Slam! Ouch.

I received the tectonic plate shifting news with a prognosis of months to live based on that night’s CT scan. The results showed cancer cells taking up residence in each and every organ within my fluid-bloated belly. I reacted with the steadiness of a third grade teacher at 2:59 on the last day of the school year. My response: nope, not going to happen. I’d wait for further tests to come back as my intuition rang like the three o’clock school bell in that same classroom yet from a 10 year olds perspective, telling me I could run from the room and down the hallway to a reprieve from doom. From the hard punches that awaited me in a world of colorfully painted punch bugs.

Slam! Ouch! Stop it!

I hate the pink ones most of all.

I was partially correct, in that cancerous abdominal ascites fluid can appear to leave traces of the cancer cells like a swimmer floating around a pool on a sunny day. The cells cast cancer shadows everywhere and leaving radiologists not trained in oncology mystified I suppose. There goes the technology failing me again. The correct diagnosis, the wrong prognosis.

I’m now at the cusp of the end of my fourth year since the 25th day of March, 2015. So how did early detection help in my case? The technology failed me, my General Practionier failed me, and my killer boobs failed to warn me that I’d get punched over and over. They’re dense though. Exceedingly stupid. An IQ of two – one point each and a very generous point in my opinion.

So if you like me have stupid dense breast, and you cannot even feel a single lump because it’s all lumps, ask for a 3-D mammogram and if that’s not available yet for you, get an ultrasound. Have it read by someone qualified to read it. Please don’t wind up de novo if you can let early detection try to work for you.

Slam! No one told me.

Ironically, the color of the ribbon for metastatic disease is pink, green, blue and white – the same colors of my bruises as they just blossom before they heal. I’m weird, yes, but then perhaps my metaphor isn’t so silly at all.

“Mom! It’s hitting me again! Make it stop.”

Dense boobs, will they ever learn?