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.

6 thoughts on “Diagnosis Fallout: the week after first learning I had stage IV breast cancer

    1. It’s part of the history of my life with cancer as my job. I posted it so those who are recently diagnosed can see if you push and educate yourself you can get what you need. I’m not one to sit and wait for things to happen. I can’t stand the line “it will take care of itself.”

      No nothing takes care of itself, we take care of what manifests for us or nothing will come from passively waiting for it to happen.

      1. My story is a bit different, but my struggle came in being diagnosed. We had to fight and fight and fight for a very very long time. Thus, I was very advanced when it was finalky diagnosed. We too had to make thungs happenm but our system is quite different to yours anyway. We were fighting forbmy lufe against all the odds. Then,after diagnosus we had fyrther fughts, cancer us nit easy, and you do not always get compassion and caring, but you still have to go on. I was dying when they eventually diagnosed me. Long story though.

        1. I’m humbled you shared your story – it’s important because everyone has such a different experience and it’s important to understand how to deal with things when someone is newly diagnosed especially with metastatic cancer. We don’t know what tomorrow will bring – we cannot make long life plans and our time is so valuable it’s hard at times to hear about people griping about things that mean nothing in the grand scheme of things. I’m sorry you had to go through so much horrific treatment as well – I was already with my second oncologist by the time this practice had gotten back to me. If I’d waited for them I’d be dead already. Everyone must learn what they can do for themselves and try not to freeze up when things seem at their worst. I am the head of my cancer care team. No one knows me better than me and a one hour meeting once a month if I’m lucky these days since my oncologist is so over subscribed. But he listens to me and responds with real solutions that we agree together based on what I want and his knowledge.

          I wish I could do more for you to help but I think maybe just knowing we aren’t alone sometimes works wonders.
          Much love
          Ilene

  1. Oh my goodness, Ilene – what a terrifying situation to have found yourself in. I’m already amazed by your resilience, and the knowledge that this is how things started only adds to my admiration and sadness (I don’t do anger). Here in the U.K. there’s a lot of criticism levelled at our National Health Service (NHS) because it’s understaffed and can’t always afford the more expensive treatments. As a result, diagnosis can be slower than ideal – but I personally have generally received excellent care, for which I am eternally grateful. The thought of hospitals refusing treatment, basically because of an administrative problem, fills me with horror. ❤️

    1. Oh it was horrifying and only my persistence and perseverance paid off – I called CalMed and explained my situation and I do recall not being able to hold back my tears mainly because of frustration not the diagnosis since it was difficult to figure out which was worse. Within 10 minutes I had gotten switched back to my original primary care physician and then was given proper treatments and taken off tamoxifen and put on to aromatase inhibitors, into chemical menopause and began Xeloda at home. I did quite well and even battled my way after changing oncologists twice and finding a surgeon to do an actual lumpectomy to remove a small leftover of a tumor and to get a fresh pathology after success with xeloda. I did not fare well on many of the injections and had severe responses to them until I was put on xgeva, faslodex and xolodex monthly. That worked but my oncologist only wanted to see me once every quarter and punted my care all over to palliative who are horrifyingly overworked. I then switched to Stanford and have been there almost two years this month. Every December because my original oncologist wasn’t watching closely enough and a mishap the following year with more insurance nightmares I filled up like an oompah loompah with ascites abs was drained multiple times. I only hope this year to be in Hawaii on Kauai as a safeguard to being put in hospital – hey if I do have to go the view will be better anyway.

      You know as well as I that no matter what country one resides in that self advocacy will get you what you need more than waiting for things to happen to you – you have to educate yourself and make it happen for you.
      Much love,
      Ilene

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