Tissue Assay/ Functional Profile: thoughts and questions.

daisy366
daisy366 Member Posts: 1,458 Member
edited January 2012 in Uterine/Endometrial Cancer #1
We have chatted about this off and on for a few years. That issue of the tissue assay is so baffling to me – so basic. Docs order scans and bloodwork, but assume that the standard drugs will always work. How many lives can be saved by being more exact in the selection of treatment. Have lives been shortened because vital information was not accessed?

Cynthia Rose's mother is an example of someone who did not have this test, received the standard treatment for upsc (carboplatin and taxol), and later learned that this treatment was not very effective as evidenced by rapid progression of tumors.

How many of us had doctor's that ordered this testing at beginning of treatment?

Since I did, I assumed that it was routine but sadly learned otherwise. It seems to me that this test can save time, money, and lives if done routinely. Am I off-base on this thinking? If not, is there anything we can do as a community of patients to help the community of doctor's (and insurance companies) see the importance in getting this test early on???

I am interested in your feedback and suggestions about this.

Mary Ann

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #2
    Mary Ann:I feel the same
    Mary Ann:

    I feel the same way. However, it is an uphill battle with so many insurance companies. I didn't see why I would need a CT scan when my doctor ordered a PET but because of the policies of the insurance companies, they denied the PET scan when in the past I had been getting PET scans all along (I changed insurance companies). I can see why if someone is new to get the CT scan first, but after years after my surgeries, and the doctor's suggestions, a PET would have been more fitting for me.

    It is the same with medicines too. But unless when can get both the physicians and the medical insurance on board, this will be difficult (but doable).

    Also, these insurance companies are sending out requests to a firm to deny or approve these requests. They do not know the situations, do not review charts or anything like that. They just go by protocol. It is so unreal.

    They also push some drugs that they want to try.

    Even before my initial hysterectomy surgery, I ask for a scan and was told that it wouldn't show anything. But they were wrong.

    Kathy
  • Songflower
    Songflower Member Posts: 608
    #3
    Kaleena said:

    Mary Ann:I feel the same
    Mary Ann:

    I feel the same way. However, it is an uphill battle with so many insurance companies. I didn't see why I would need a CT scan when my doctor ordered a PET but because of the policies of the insurance companies, they denied the PET scan when in the past I had been getting PET scans all along (I changed insurance companies). I can see why if someone is new to get the CT scan first, but after years after my surgeries, and the doctor's suggestions, a PET would have been more fitting for me.

    It is the same with medicines too. But unless when can get both the physicians and the medical insurance on board, this will be difficult (but doable).

    Also, these insurance companies are sending out requests to a firm to deny or approve these requests. They do not know the situations, do not review charts or anything like that. They just go by protocol. It is so unreal.

    They also push some drugs that they want to try.

    Even before my initial hysterectomy surgery, I ask for a scan and was told that it wouldn't show anything. But they were wrong.

    Kathy

    Drugs Targeting Chemo
    I see my Gyn Onc for consult in between. She ordered a Caris testing. The results were very different than the first results from the first test. Everyone assumed I was resistant to platinum drugs but the caris showed I was not. I am on carbotaxol now. It is a very expensive test. $7,000 and my insurance pain with my secondary hopefully picking up the rest. It was very different from the first test.

    I am worn out with the numbers and my husband stays up at night and does the the studying now.

    Google a targeting Caris test. This will give you more information. I agree with just following the protocal is not the answer.

    Diane
  • california_artist
    california_artist Member Posts: 816 Member
    #4
    Nevermind
    Nevermind, sorry.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #5
    california_artist said:

    Nevermind
    Nevermind, sorry.

    Diane
    Interesting that the tests are different but it makes sense if the cancer cells mutate again. Kind of like a moving target. Glad you had another assay to help discover that platinum is a drug they can try now.

    Ladies, check this out with your docs!!

    Mary Ann
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #6
    california_artist said:

    Nevermind
    Nevermind, sorry.

    Diane
    dup
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #7
    daisy366 said:

    Diane
    dup

    tissue
    Diane, was the Caris test able to be done with old/preserved tumor tissue? If not, what was used?

    joann

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