What do you wish someone had told you?

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  • DLoJourney58Strong
    DLoJourney58Strong Member Posts: 3 Member
    edited July 2020 #82
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    Newly Diagnosed

    Well, this is not what I expected this summer. I am newly diagnosed as grade 1 adenocarinoma. I'm scheduled for a total hysterectomy on July 15th - robotic assist. From reading different discussion posts, I feel relieved but the waiting is stressful. I'm very hesitant about sharing my diagnosis with family. I guess I'm hoping that surgery will "fix me." However, I know that I probably will benefit from family support so I am struggling with finding the right way to approach this disclosure. I'm a very private person, so this is difficult for me. Does anyone have suggestions of help or advice to offer?  Thanks~

  • Forherself
    Forherself Member Posts: 975 Member
    edited July 2020 #83
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    Newly Diagnosed

    Well, this is not what I expected this summer. I am newly diagnosed as grade 1 adenocarinoma. I'm scheduled for a total hysterectomy on July 15th - robotic assist. From reading different discussion posts, I feel relieved but the waiting is stressful. I'm very hesitant about sharing my diagnosis with family. I guess I'm hoping that surgery will "fix me." However, I know that I probably will benefit from family support so I am struggling with finding the right way to approach this disclosure. I'm a very private person, so this is difficult for me. Does anyone have suggestions of help or advice to offer?  Thanks~

    welcome DLoJourney

    We are always sorry you have to come, but welcome and know you will find lots of advice and support here.   I felt the same way you do.  I STILL have a hard time talking to friends and family about my uterine cancer.   My problem initially was that people would be upset and I didn't want to have to deal with their emotions.  I was having a hard enough time dealing with my own.  AND I couldn't answer their questions.  I am an RN but it took me a good 4 months to read all the information and understand the research articles that are the biggest resource for us.  I was a little evasive and had to say. I really didn't know many times which was the truth.  I did end up having an early cancer, but an aggressive type so people did not understand that it could come back even at an early stage. I got tired of explaining it.  I found it easier to come here and discuss things.  I just did not want to deal with other people's emotions.  I still don't talk about it much with my family.  I can't give you advice, just letting you kow you are not alone.

  • MAbound
    MAbound Member Posts: 1,168 Member
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    Same way

    It's funny. I can talk freely here, but only wanted to retreat from everyone face to face after my diagnosis and during treatment. My husband shielded me by informing everyone and keeping them up-to-date for me. He's my opposite, so doing all of the talking was therapeutic for him. It's ok to be who you are, so maybe just telling one person who can be your spokesperson with everybody else would help you, too.

  • Molly110
    Molly110 Member Posts: 191 Member
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    Newly Diagnosed

    Well, this is not what I expected this summer. I am newly diagnosed as grade 1 adenocarinoma. I'm scheduled for a total hysterectomy on July 15th - robotic assist. From reading different discussion posts, I feel relieved but the waiting is stressful. I'm very hesitant about sharing my diagnosis with family. I guess I'm hoping that surgery will "fix me." However, I know that I probably will benefit from family support so I am struggling with finding the right way to approach this disclosure. I'm a very private person, so this is difficult for me. Does anyone have suggestions of help or advice to offer?  Thanks~

    I think there is no one right

    I think there is no one right way to approach disclosure. I believe that each of us has the right to choose who we want to tell and how much we want to disclose. Dealing with other people's fears and emotions can be too much when we are still coming to terms with what is happening to us. My mother was 92 and my sister in law in the final months of a long fight with breast cancer, so I decided not to tell my mother and, in order to prevent her learning of it accidentally, I limited who I did tell to just a few people. Even now, there are few people who know that I had a rare and nasty form of endometrial cancer. I just said endometrial cancer, which saved me a lot of painful and difficult conversations.

    I hope surgery "fixes" you, too! If you do need more treatment, I think you're right that you will need support from family and friends. I told my sister and my brother and my three best friends everything, and they held my hand and had my back throughout treatment. I didn't think of myself as a private person until this happened, and I found myself struggling to deal with all of the strangers who were part of my care, not to metion strangers in a restaurant or store who could tell I was in chemo and thought that I would welcome comments from them. : )  

    If ever there is a time in life to do what is best for you and to think less about how to protect or shield others, this is it.

    Wishing you the best of luck! 

  • DLoJourney58Strong
    DLoJourney58Strong Member Posts: 3 Member
    edited July 2020 #86
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    MAbound said:

    Same way

    It's funny. I can talk freely here, but only wanted to retreat from everyone face to face after my diagnosis and during treatment. My husband shielded me by informing everyone and keeping them up-to-date for me. He's my opposite, so doing all of the talking was therapeutic for him. It's ok to be who you are, so maybe just telling one person who can be your spokesperson with everybody else would help you, too.

    Newly Diagnosed

    Thats a wonderful idea; to have a spokesperson. My husband is the same (open and conversant) so he could feed his need to be supportive, communicative, and shielding at the same time. Thank you!

  • DLoJourney58Strong
    DLoJourney58Strong Member Posts: 3 Member
    edited July 2020 #87
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    Molly110 said:

    I think there is no one right

    I think there is no one right way to approach disclosure. I believe that each of us has the right to choose who we want to tell and how much we want to disclose. Dealing with other people's fears and emotions can be too much when we are still coming to terms with what is happening to us. My mother was 92 and my sister in law in the final months of a long fight with breast cancer, so I decided not to tell my mother and, in order to prevent her learning of it accidentally, I limited who I did tell to just a few people. Even now, there are few people who know that I had a rare and nasty form of endometrial cancer. I just said endometrial cancer, which saved me a lot of painful and difficult conversations.

    I hope surgery "fixes" you, too! If you do need more treatment, I think you're right that you will need support from family and friends. I told my sister and my brother and my three best friends everything, and they held my hand and had my back throughout treatment. I didn't think of myself as a private person until this happened, and I found myself struggling to deal with all of the strangers who were part of my care, not to metion strangers in a restaurant or store who could tell I was in chemo and thought that I would welcome comments from them. : )  

    If ever there is a time in life to do what is best for you and to think less about how to protect or shield others, this is it.

    Wishing you the best of luck! 

    No right way

    Thank you. I needed to hear this. 

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited July 2020 #88
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    Newly Diagnosed

    Thats a wonderful idea; to have a spokesperson. My husband is the same (open and conversant) so he could feed his need to be supportive, communicative, and shielding at the same time. Thank you!

    I had to tell

    I was lucky, in a way, when I had my cancer diagnosis in 1977. I was teaching high school and planned to continue teaching during chemo and radiation. I was out for a week recovering from surgery, so had to have something to explain absence. So, when doc told me I would lose my hair fast once chemo started, I had my head shaved and showed up at school in the coolest Aussie military hat! I explained I had cancer and would be needing their help in the next 6 months - staying back from my desk, not coming close when ill, etc. Then began one of the best years of my life - best classes I have ever taught! So, when cancer came again in 2016, no sweat telling everyone. I have 3 very strong adult children who have always been able to take whatever comes. 

    I think you will find once you tell, people will surprise you in so many wonderful ways. Know you will get support here.

  • Molly110
    Molly110 Member Posts: 191 Member
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    No right way

    Thank you. I needed to hear this. 

    So glad it was helpful. Now

    So glad it was helpful. Now that my treatment is over, I want to put it all behind me, but I find myself checking this discussion board regularly because I found it so helpful when I was diagnosed. 

     

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
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    derMaus, your post changed my life. Not sure I told you yet. It inspired me to get moving & take charge of this journey.

  • Lacudia
    Lacudia Member Posts: 2 Member
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    I thank everyone for their comments. I have had a CA 125 and MRIs. I am making a list so I know what to ask my doctor on Thursday to discuss results of tests. I feel a little uncomfortable asking to record, but at the least my husband will be their to take notes.I was devastated when the doctor found a mass in my. Uterus last Thursday. I feel so much more hope reading every ones comments.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    edited August 2022 #92
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    JUST SAW THIS WAS AN OLD POST BUT LEFT MY COMMENTS ANYWAY


    So sorry you have to go through this. My hysterectomy was a “routine” one and they didn’t find the cancer until after I had my hysterectomy and then they had to go back in for staging surgery.

    Questions I would ask is when they do your hysterectomy will they remove your omentum and appendix? They removed mine during the staging surgery because my doctor indicated that that is a common place for recurrence.

    Are they doing it laparascopic or traditional? Mine was traditional. With traditional you will need additional recovery time to heal. With either one, just make sure that you start to walk as soon as you can. Get your laps in at the hospital! Walking will help wake up your bowels after surgery.

    Before my hysterectomy I had asked for scans, but was told no because it was just endometriosis. I wish they had did a PET scan because then it possibly would have save me from having the second surgery wherein I ended up with an infection. See if you can get a PET Scan. Most times though insurances denies PET Scans and makes you do a CT scan but I would push for PET scan.

    You will have more questions after you find out what type, stage and grade. My best to you on your upcoming surgery. Stay strong!

    Kathy