MSK - Literally Abandoning a Patient - When Are They Held Accountable?

deebeee
deebeee Member Posts: 1 Member
edited December 2023 in Breast Cancer #1

I have breast cancer, a recurrence. Prior to surgery, my surgeon wanted me to go on medication (Aromatase Inhibitors) that block estrogen so the tumors can be reduced in size before surgery. Fine. WELL, you will need assistance in this as these estrogen blockers cause a host of incredibly unbearable side effects.

The first oncologist (their area is the medication side of things) I saw was a total zero in terms of how to help with the extreme piercing abdominal pain I was going through on the med. A zero. I requested a switch to another oncologist. I thought I'd found a truly good oncologist. Well they sure fooled me.

This person NEVER gave me, in 5 months, a single suggestion in how to possibly alleviate side effects. Her advice consisted of "switch to the next estrogen inhibitor." After doing ALL 3 and enduring incredible pain, she had zero to offer.

The very worst part is the hostile, cruel attitudes at MSK. Sure the underlings are sweet and chatty, but as far as doing their best for you, or even "doing no harm" this is a meat market and the patient doesn't count at all. Not a right in the world. Their Patient Rep Dept allegedly advocates for the patient ... hahahaaa ... no, wrong again. Not a crumb of help.

I am so disgusted at the lack of accountability at MSK. They pay their CEO 7MILLION$ a year, then after that they love to train their staff to behave like Airline Stewardesses. Beyond that, they don't do a damned thing.

I kept begging for help as these meds are crucial to surviving in the future, preventing a recurrence. Not only did creature fail to do that, she lied and issued a message in which she claimed to have done counseling with me on side effects, that she gave me suggestions. LIES.

Abandon hope all you who foolishly enter here. MSK in Manhattan is a torture operation.

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2

    Hello - I have heard both good and bad about MSK, Some love it, some hate it.

    I am sorry for your bad experience, and wish you well as you move forward. I hope that you can find - as I personally think it would be beneficial if you went looking for treatment, elsewhere - a provider who is tuned into you as a patient.

    One thing I did realize, early on in my journey, was that each specialist is basically tuned in to what they specialise in, which is the actual fighting of the Cancer,;and do little - or dare I say, care little, about your side effects or other problems arising from said treatment., and definitely not any other problems highlighted by tests. Case in point, on a couple of my CT Scans, it showed arteriosclerosis in my heart and abdominal aorta. I asked my Radiation Oncologist if I should be worried, and he said no. Then I had a heart attack. I have other examples, but that one is my best - thank goodness I survived to tell the tale.

    If you head over to the Breast Cancer Forum - https://csn.cancer.org/categories/breast - you may find folks who are able to give you advice on Oncologists in your area. This is the Colorectal Cancer forum, so a bit out of our league.

    I wish you the best in your journey through Cancer.

    Tru

  • rcsmith
    rcsmith Member Posts: 3 Member
    #3

    I am finding the same sort of situation. I had a lumpectomy and then radiation. Started on Anastrozole November 27th. I had Dizziness, headaches, blurred vision, and difficulty concentrating. It started 6 hours after the first dose. Then consistently 2 hours after taking for 10 consecutive days. I called the Oncologist after the second day of agony. He said "It is not from the Anastrozole." He also told me "I should be along for the ride." I switched Oncologist and she was mean and said "I only have 15 min to see you because I am squeezing you in." She said stop taking it and left. I was floored. I left and strangely enough took advise from of all places Facebook. I called and asked to be switched to name brand Arimidex. I have been taking it for 2 weeks with minimal side effects. With further looking into things you would think they are the same , but the insert ingredients are different. I then decided to switch oncologist yet again. I want an oncologist that cares for me as a patient, has time for me as a patient, and I am not a long for the ride. The Oncologist do not know how to deal with real people with real side effects and everyone reacts differently. I am finding Facebook more helpful with side effects. Use Claritin and Tart Cherry for joint pain. Switch Manufaturers of the medication till you find one you can tolerate. By the was some on the Manufaturers have poor quality control and may have more and cross contamination of other medications.

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