Endometrial with clear cell features

Heather H
Heather H Member Posts: 11
in Uterine/Endometrial Cancer #1
My sister is really agonizing about what treatment course to take. An initial endometrial biopsy found endometrial cancer with clear cell features . As a result of this biopsy she had a hysterectomy and they examined a lot more tissue and found only endometrial cancer in her uterus and some in her cervix. She was told she has stage 2 grade 2 endometrial and that normally she would just have internal radiation and chemotherapy No pelvic radiation. How however because of the endometrial cancer cells with the clear cell features that were found in the initial biopsy some doctors think she should have pelvic radiation and some do not. The clear cell features were not found in the uterus when it was removed. She is worrying about side effects and long term effects of pelvic radiation which seem to be worse than with the internal radiation. What are clear cell features.? The doctors seem surprised to see these features with endometrial cancer cancer. Anyone else experience this? It also be so good for my sister to have some good books on how to deal with all this emotionally. She is having a really hard time and needs hope. She doesn't want to join this site because she is afraid she will read something that will devastate her . So I am thinking of any good biographies, books on how to hope even what to expect with chemotherapy and radiation would be helpful. Of course you women are a great support and hopefully my sister will connect with you in the future. She is just so depressed right now. Thanks for all your help.
Heather

Comments

  • daisy366
    daisy366 Member Posts: 1,458 Member
    #2
    Heather
    I certainly can relate to your sister's fear and shock.

    Recently I discussed my own fears with my doc - that I was headed for decline. He succeeded in helping by making the following 2 points - not all "like" cancers behave in the same way and we could die in a traffic accident any day (not all that reassuring perhaps).

    But his point was that none of us really knows what will happen and that we should strive to live each day to the fullest - doing good works along the way.

    One thing that helped me early on was when I made a CONSCIOUS DECISION that I would not BE DEFINED BY CANCER.

    I wish your sister well. She is very fortunate to have you for a sister.

    God bless, Mary Ann
  • carolenk
    carolenk Member Posts: 907 Member
    #3
    daisy366 said:

    Heather
    I certainly can relate to your sister's fear and shock.

    Recently I discussed my own fears with my doc - that I was headed for decline. He succeeded in helping by making the following 2 points - not all "like" cancers behave in the same way and we could die in a traffic accident any day (not all that reassuring perhaps).

    But his point was that none of us really knows what will happen and that we should strive to live each day to the fullest - doing good works along the way.

    One thing that helped me early on was when I made a CONSCIOUS DECISION that I would not BE DEFINED BY CANCER.

    I wish your sister well. She is very fortunate to have you for a sister.

    God bless, Mary Ann

    Clear cell cancer
    My understanding of clear cell cancer is that there is often a lower response rate to first line chemo than there is with the other kinds of gynecological cancers. Kidney cancer is often the clear cell type. The chemo for that is called temsirolimus (Torisel).

    There is a clinical trial going on for solid tumors using temsirolimus & another drug that inhibits cancer by stopping its ability to create new blood vessels. The reason I am telling you this is just to let you know that the researchers are working on new combinations of anti-cancer treatments. Meanwhile, all the oncologist will do is something called "standard of care" which you HOPE is gonna put her into remission.

    Because this type of cancer is so rarely found in gyn cancers, there usually isn't any research done on the best treatment for clear cell endometrial or ovarian cancer. So (this is just my opinion), the doc probably wants to go "one step more than usual" just to have a better chance of getting your sister into remission.

    Your sister is probably still in shock from her diagnosis. She's gonna have to trust the doctor because he or she is the expert here. If I were you, I wouldn't even tell your sister what I said about clear cell cancer--it isn't gonna help her to think any other way than hopeful. I'm not an oncologist, I'm just guessing why the oncologist wants to be more aggressive with your sister's treatment.

    I know an ovarian cancer survivor who was diagnosed with clear cell cancer. After two years of trying just about EVERY possible chemo combination without getting into remission, her doctor prescribed temsirolimus (which the insurance did approve even though it was considered to be an "off label use" since it is not officially approved for ovarian cancer). The last time I checked in with her, the chemo was working.

    Sorry for the long post. There is so much to learn about cancer & cancer treatments & staying alive while waiting for better treatments to come along.

    Best wishes to you & your sister.
  • carolenk
    carolenk Member Posts: 907 Member
    #4
    carolenk said:

    Clear cell cancer
    My understanding of clear cell cancer is that there is often a lower response rate to first line chemo than there is with the other kinds of gynecological cancers. Kidney cancer is often the clear cell type. The chemo for that is called temsirolimus (Torisel).

    There is a clinical trial going on for solid tumors using temsirolimus & another drug that inhibits cancer by stopping its ability to create new blood vessels. The reason I am telling you this is just to let you know that the researchers are working on new combinations of anti-cancer treatments. Meanwhile, all the oncologist will do is something called "standard of care" which you HOPE is gonna put her into remission.

    Because this type of cancer is so rarely found in gyn cancers, there usually isn't any research done on the best treatment for clear cell endometrial or ovarian cancer. So (this is just my opinion), the doc probably wants to go "one step more than usual" just to have a better chance of getting your sister into remission.

    Your sister is probably still in shock from her diagnosis. She's gonna have to trust the doctor because he or she is the expert here. If I were you, I wouldn't even tell your sister what I said about clear cell cancer--it isn't gonna help her to think any other way than hopeful. I'm not an oncologist, I'm just guessing why the oncologist wants to be more aggressive with your sister's treatment.

    I know an ovarian cancer survivor who was diagnosed with clear cell cancer. After two years of trying just about EVERY possible chemo combination without getting into remission, her doctor prescribed temsirolimus (which the insurance did approve even though it was considered to be an "off label use" since it is not officially approved for ovarian cancer). The last time I checked in with her, the chemo was working.

    Sorry for the long post. There is so much to learn about cancer & cancer treatments & staying alive while waiting for better treatments to come along.

    Best wishes to you & your sister.

    Minimizing side effects
    As if I hadn't already said enough: there are some members on this site who know how to minimize the side effects of pelvic radiation.

    If you look at some of the older postings, there is a LOT of really good info on natural support therapies that your sister should consider using.

    I'm done now.
  • CindyGSD
    CindyGSD Member Posts: 190
    #5
    this site....
    If you search this site, especially the older uterine posts, you will find tons of information that could be helpful to your sister. I can't speak to the type of cancer your sister has, but I can say that I just finished 25 rounds of internal radiation and have really had very little noticeable side effects. That doesn't mean my insides aren't mush, but so far, so good. I think they've come a long way in terms of radiation and if you have a skilled oncologist radiologist, the long term effects can be kept to a minimum, but of course everyone is different. Obviously she needs to do what she feels comfortable with and I wish her the best.

    Take care,
    Cindy

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