Advice

Twooffour
Twooffour Member Posts: 4
in Uterine/Endometrial Cancer #1

Hello.

I have never done this so I hope I don't mess it up.

I have grade 3 adenocarcinoma 80 0/0, serious carcinoma 10 0/0, undifferentiated carcinoma 10 0/0

Had a robotic hysterectomy took uterus, ovaries, Fallopian tubes, cervix and sentinel lobes.

Post surgical appointment for staging and treatment is this Friday.

Have already been told will need chemo due to the aggressiveness of the CA

Any suggestions for questions to ask the doctor?

Thank you!

Twooffour

Comments

  • Editgrl
    Editgrl Member Posts: 903 Member
    #2
    Welcome, Twoffour

    I'm sorry that you've had to come here, but I'm very glad that you found this board.  The women here are a great source of information and support and nothing is off limits here!

    The American Cancer Society has a list of questions to ask your doctor, http://www.cancer.org/cancer/endometrialcancer/detailedguide/endometrial-uterine-cancer-talking-with-doctor

    but I can give you a few here so you won't have to go crawling through the internet right now.

    What is the stage of my cancer and what does it mean?

    What treatments are you recommending and why?

    What is the goal of the treatment?

    How will my response to treatment be monitored and how will we know if it is working?

    How should I prepare for treatment?

    What risks or side effects should I expect?  What can I do to help manage the side effects?

    What are the chances of recurrence with this treatment plan?

    If you can, take someone with you to your follow-up appointment to be another set of ears. Sometimes they'll even ask questions you hadn't thought of.  You'll be getting a lot of information and it's easy to forget things. Some doctors will even let you record your appointment on your phone so you can listen to it later.

    I'm sure other ladies will chime in with additional questions you can ask.  Please come back and let us know how your appointment goes.

    Chris

  • MAbound
    MAbound Member Posts: 1,168 Member
    #3
    Yes!! Take someone with you!

    I want to 2nd Chris's advice about taking someone with you into the exam room. You get so much information given to you at these appointments and will have so many questions. Write them down to take with you ahead of time. Look up your questions online ahead of time to help wittle them down or help understand replies you get from your doctor better. It's a steep learning curve when you start on this journey.  It's worth the time and effort because knowledge is empowering when you otherwise feel lost and helpless.

    A second piece of advice is to get hard copies of your hospital records and any lab work and tests you have done as you go along, for your own home records. You will especially want the staging pathology report when it's finalized. They will all come in real handy as time goes on and you get sent to other doctors who want to know your history and for future generations who want to know what they need to watch out for if there is a genetic connection. Institutions and doctors are usually only mandated to keep records for a set number of years, like 5-7, depending on what state you live in. 

    A third piece of advice is to get medical information about cancer history and causes of death from your siblings, parents, their siblings and your cousins, and your grandparents. You may be referred to a genetecist  at some point by your oncologist or be interested in pursuing genetic testing on your own and gathering such information can take some time if your relatives are elderly, already deceased, or you haven't been in touch with them for a long time. It would be easier on you if you start gathering it sooner rather than later when you may have a time deadline to get it done by.

    Good luck. Remember you are not alone on this journey whether you need information or just some support when the road gets rough. 

  • brissance
    brissance Member Posts: 192
    edited September 2016 #4
    Excellent Advice

    Editgirl and MAbound nailed it!  Can't tell they have been there before and both have done a tremendous amount of research.  

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited September 2016 #5
    Twooffour

    Glad you found us. And so sorry you needed to! The ladies have given you great advice for your appointment. If you are curious about how chemo may effect you, we have a thread titled 'Ladies Going Through Chemo' that has a ton of information from many of us on how we were impacted as we went along our chemo journey.  If you have time to read it, you will see that it impacts each of us a bit differently. Some things are the same, and the tips on preventative measures will help you. The one thing I will tell you is that going through chemo side effects is hard but doable. The first treatment is scary and you will find that it is much easier than you fear it will be.

    Please come back and let us know how you are doing. We are here to help.

    Love and Hugs,

    Cindi

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    edited September 2016 #6
    Questions to Ask

    Hi Twooffour, I echo everone's sentiments that we are sorry that you have been given this diagnosis and that we hope we can be for help to you in this journey.

    It sounds like you may have already accessed your pathology report from your hospital's online portal. I did too and had already done a lot of research on my diagnosis (uterine MMMT, stage 1b, grade 3) before going into that first follow-up appointment. I knew for sure that I was going to get a second opinion. I asked my gyn-onc's opinion about it and he was perfectly fine with it although he warned me that it could come back with a different diagnosis (he was right). I also asked him about the recent studies indicating progression-free survival and overall survival for my diagnosis. He warned me away from retrospective studies since so much has changed in the last few years.   

    I was particularly interested in finding out about my treatment plan, specifically, what chemo meds would be used and why, how many chemo treatments over what period of time, whether a port was advisable for the chemo treatments, what type of radiation and why, how many radiation treatments and over what period of time, and the expected benefits and side effects of both types of treatments.

    I recommend taking a tape recorder or some sort of recording device with you. I did and found it incredibly helpful to listen to it afterwards since both my husband and I missed a lot of what the gyn-onc had said during that first meeting.

    I hope this information helps. Good luck to you on Friday and please let us know how it goes.  Wishing you strength and hope, Kim

  • janaes
    janaes Member Posts: 799 Member
    #7
    Kvdyson said:

    Questions to Ask

    Hi Twooffour, I echo everone's sentiments that we are sorry that you have been given this diagnosis and that we hope we can be for help to you in this journey.

    It sounds like you may have already accessed your pathology report from your hospital's online portal. I did too and had already done a lot of research on my diagnosis (uterine MMMT, stage 1b, grade 3) before going into that first follow-up appointment. I knew for sure that I was going to get a second opinion. I asked my gyn-onc's opinion about it and he was perfectly fine with it although he warned me that it could come back with a different diagnosis (he was right). I also asked him about the recent studies indicating progression-free survival and overall survival for my diagnosis. He warned me away from retrospective studies since so much has changed in the last few years.   

    I was particularly interested in finding out about my treatment plan, specifically, what chemo meds would be used and why, how many chemo treatments over what period of time, whether a port was advisable for the chemo treatments, what type of radiation and why, how many radiation treatments and over what period of time, and the expected benefits and side effects of both types of treatments.

    I recommend taking a tape recorder or some sort of recording device with you. I did and found it incredibly helpful to listen to it afterwards since both my husband and I missed a lot of what the gyn-onc had said during that first meeting.

    I hope this information helps. Good luck to you on Friday and please let us know how it goes.  Wishing you strength and hope, Kim

    So far these wonderful ladies

    So far these wonderful ladies have given great advice.  One thing i would enphasize is the need to get a copy of the pathology report.  My pathology report helped me make my final decision on what path to take.  For me i got only part of the report at at first, but when i did get it all i new what i needed to do.  So make sure you get all the pages.

    Best of luck with all that lays ahead.

    I hope you find this place as helpful as i have.

    Janae

  • Twooffour
    Twooffour Member Posts: 4
    edited September 2016 #8
    Awsome News and Thanks

    I can not begin to tell each of you how touched I was and what it has meant to me to have strangers respond to my questions.  The welcome, support and advise is beyond amazing! I posted my questions so late I truly did not expect responses. I was so happy you took the time to respond, I feel blessed to have found you!i

    My cancer is stage 1A grade three!  No chemo!  It was contained and all the specimens were negative for cancer with the exception of the uterus.  There was a tumor about 3 mm into the myometrium. No place else!  Due to the staging I do not need chemo and will only need brachytherapy.  I fell into the five percent of people with stage 3 cells that does not need chemo!  We were completely stunned! This was so not what everyone had told me!

    I can not believe how blessed and fortunate I am!  I am still trying to wrap my head around this.  I was mentally preparing myself for days before the appointment

    Thank you for the questions, web sites and threads to follow. I wrote them down and took them with me.  I couldn't sleep the night before so I was up reading threads on this site.  MAbound you are right knowledge is empowering.  Each of you gave me something to take onto the battlefield and it helped!  I am grateful I am here and have you to rely on for support and information.  Thank you!

     

     

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  • Diya
    Diya Member Posts: 93
    #9
    Its great news twooffour that

    Its great news twooffour that it is only stage 1. I wish you all the best with treatment and recovery. One advice i will give you is please get a full body pet scan done even though it is stage 1 only. Even if you have to pay for it. My mum was diagnosed with stage 1 grade 3 endometrial cancer. She went through surgery and local radiotherapy. The oncologist never did a pet scan thinking it was stage 1. But he was wrong. It was stage 4 and had spread to lungs. There were no symptoms at the time. It was picked up one year later when it had grown significantly. We looked at old scans that showed small tumours that were overlooked. A pet scan is a surer way to knowing where the cancer is. I do hope in your case it is nowhete else. But please do get a pet scan and be sure of it!

  • MAbound
    MAbound Member Posts: 1,168 Member
    #10
    Twooffour said:

    Awsome News and Thanks

    I can not begin to tell each of you how touched I was and what it has meant to me to have strangers respond to my questions.  The welcome, support and advise is beyond amazing! I posted my questions so late I truly did not expect responses. I was so happy you took the time to respond, I feel blessed to have found you!i

    My cancer is stage 1A grade three!  No chemo!  It was contained and all the specimens were negative for cancer with the exception of the uterus.  There was a tumor about 3 mm into the myometrium. No place else!  Due to the staging I do not need chemo and will only need brachytherapy.  I fell into the five percent of people with stage 3 cells that does not need chemo!  We were completely stunned! This was so not what everyone had told me!

    I can not believe how blessed and fortunate I am!  I am still trying to wrap my head around this.  I was mentally preparing myself for days before the appointment

    Thank you for the questions, web sites and threads to follow. I wrote them down and took them with me.  I couldn't sleep the night before so I was up reading threads on this site.  MAbound you are right knowledge is empowering.  Each of you gave me something to take onto the battlefield and it helped!  I am grateful I am here and have you to rely on for support and information.  Thank you!

     

     

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    ,

    Thank You!

    Just as knowledge is empowering, hearing good news is uplifting. Thanking you for sharing this wonderful news! It certainly felt good to read this this morning! 

  • Editgrl
    Editgrl Member Posts: 903 Member
    #11
    The best news possible

    That is great to hear!  Now go out and celebrate your cancer-free life!

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #12
    Twooffour said:

    Awsome News and Thanks

    I can not begin to tell each of you how touched I was and what it has meant to me to have strangers respond to my questions.  The welcome, support and advise is beyond amazing! I posted my questions so late I truly did not expect responses. I was so happy you took the time to respond, I feel blessed to have found you!i

    My cancer is stage 1A grade three!  No chemo!  It was contained and all the specimens were negative for cancer with the exception of the uterus.  There was a tumor about 3 mm into the myometrium. No place else!  Due to the staging I do not need chemo and will only need brachytherapy.  I fell into the five percent of people with stage 3 cells that does not need chemo!  We were completely stunned! This was so not what everyone had told me!

    I can not believe how blessed and fortunate I am!  I am still trying to wrap my head around this.  I was mentally preparing myself for days before the appointment

    Thank you for the questions, web sites and threads to follow. I wrote them down and took them with me.  I couldn't sleep the night before so I was up reading threads on this site.  MAbound you are right knowledge is empowering.  Each of you gave me something to take onto the battlefield and it helped!  I am grateful I am here and have you to rely on for support and information.  Thank you!

     

     

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    ,

    Wonderful news!

    TwoofFour, that is wonderful news! Congrats and please know that we will always be here for you. Kim

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