Mom newly diagnosed with Uterine Cancer

Girlpower
Girlpower Member Posts: 5
in Uterine/Endometrial Cancer #1
Hi all. My Mother was recently diagnosed with Uterine cancer. I have been reading some posts by you brave ladies and have found your stories so encouraging so Thank You for sharing so much of your personal lives and information. There doesn't seem to be enough out there on this cancer!

I will accompany Mom to see an Gyn/Onc next week but for now I know that a biopsy showed P53 and P16 positive stains after she went to see the GYN about some strange discharge. There's some long terminology on the diagnosis line that reads with the words "(something)-endometrial papillary serous carcinoma". I am sure this isn't the exact term but that's enough info for me to be very concerned.

I do know that for now we are looking at a hysterectomy including some lymphnode removal and probably radiation following. I am *assuming* they will send her tissues to pathology and we'll get a stage for her cancer then and know how far it has spread? Am I correct in that assumption?

Her GYN said there is no chemotherapy for this cancer tho and that boggles my mind since others seem to be benefitting from chemo. I am hoping that since he isn't a Gyn/Onc that there are therapies he is not aware of at the moment.

Any light you can shed on this would be helpful. Also anything I can do as a caregiver that will make her happier or healthier, please advise me.

Any quetions I should have in mind for her GYN/ONC?

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #2
    Hi Girlpower:
    Sorry to hear
    Hi Girlpower:

    Sorry to hear about her Mom's diagnosis and her possible upcoming surgery. Some of your answers can be found within this site. The one of what kind of questions you should ask was just answered within the last several weeks. I am not sure though which title is is under.

    WIth regard to chemo, it was my basic understanding that most protocols for edometrial/uterine cancers are 6 rounds of taxol/carboplatin then followed up with either pelvic radiation, bracythereapy or both. But most depends upon what the final staging is.

    If your mom has a hysterectomy, they will probably do the staging at that time testing lymph nodes, etc., and doing what they call a washing which they will test for cells.

    Make sure your mom sees a Gyn/Onc and then discuss these issues with him/her. Your mom will probably go for other tests too: CT scan, barium something (to check the colon), blood tests, chest x-rays. If your mom does need chemo, they will probably insert a port (an outpatient procedure) which helps protect the veins from the chemo. (which is a lot better than looking for veins to stick).

    Also, try not to look on the internet for stuff, because some of the things they you may bring up are old and outdated.

    Try to have all of your questions written down. No question is ever too small to ask. Also, if it doesn't feel right, it is ok to get a second opinion.

    My best to you and your mom.

    Kathy
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #3
    Hi Girlpower,
    Sorry about your Mom, but glad to see you have said you would be your Mom's caretaker. My daughter was my caretaker when I went through my journey with MMMT uterine cancer in March-current time. It does help having a family member with you. I had my sister and best friend with me too!
    In regards to question, none are too stupid to ask the Gyn-Onc drs. It does help to take a family member with you so they can take notes and write down what the Dr is saying. If you do not understand it, ask till they explain it. We took a recorder (iPhone) and recorded the first meeting with the Drs so that we could go back and understand.
    The questions we asked at the first appointment could not be answered until surgery and pathology was done, so be prepared to not being told staging, where is it, did you get all of it because until the GynOnc Drs go in they cannot confirm stage, where and did they get it all. After the surgery and pathology they will have more answers. They best thing to do is get the surgery done fast.
    It depends on where you are but in Dallas, I did 6 rounds of chemo but had no radiation after the complete radical hysterectomy. After the surgery the Drs said there was no more cancer because they removed it all, so chemo only no radiation. It may be different in each area. Ask the Gen-Onc Drs why.
    Good Luck with the meeting and the follow up surgery. The best advice I would say is to be there for your Mom but if your Mom is a strong independent type person that likes to do things for herself, do not baby her. My daughter tried that with me and I got mad at her. There is a lot of information on this site from women that have gone through or going through uterine cancer, so do not be afraid to ask on this site.
    I did not find this site until I was almost through with my treatment and then did not join until right at the end. It is good to join before the journey starts.
    Good Luck. Trish
  • Girlpower
    Girlpower Member Posts: 5
    #4
    Thank You for the
    Thank You for the information. Lots to learn! It's so hard to know what to ask as I am still new to this situation and I know my Mom will ask my opinion. I know my siblings will be there to help also but I will attend her appointments with her so I need to understand and be able to help answer their questions.

    I hope I am posting this correctly, I appologize if I am not.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #5
    Girlpower said:

    Thank You for the
    Thank You for the information. Lots to learn! It's so hard to know what to ask as I am still new to this situation and I know my Mom will ask my opinion. I know my siblings will be there to help also but I will attend her appointments with her so I need to understand and be able to help answer their questions.

    I hope I am posting this correctly, I appologize if I am not.

    (((Girlpower))). So sorry your family is dealing with this.
    IF you find yourself sleepless or have time on your hands, I'd like to suggest that you go to the bottom of this page and scroll back to the earliest posts archived on this Board. The OLDEST thread archived here started in 2008, and details the early cancer journeys of several women newly diagnosed with UPSC (myself being one). Standard treatment hasn't really changed since then, and I think you'll be comforted to read the 'real time' posts of women who were, at that time, exactly in the same place as your mother is now. The thread loads very slow slow slow because it is so long, so be patient with that. I think these stories of chemo and losing their hair and radiation challenges will prepare you for what is likely coming for your mom. The positive message to you on this thread is that the cancer treatments are all do-able, and not near as bad as what you might fear they will be. And I'm pretty sure that all of these women posting back in 2008 and early 2009 are still alive. Several of them went into remission after their initial chemo and radiation, and their cancer has NEVER returned. They have returned to their jobs and pre-cancer lives. There is hope, justifiable hope.

    I echo what others have said; do NOT read all of the grim statistics on the internet about papillary serous cancers, as anything older than 2010 is completely outdated. (((hugs))). Post again and ask us anything and we'll try and help.
  • Girlpower
    Girlpower Member Posts: 5
    #6
    lindaprocopio said:

    (((Girlpower))). So sorry your family is dealing with this.
    IF you find yourself sleepless or have time on your hands, I'd like to suggest that you go to the bottom of this page and scroll back to the earliest posts archived on this Board. The OLDEST thread archived here started in 2008, and details the early cancer journeys of several women newly diagnosed with UPSC (myself being one). Standard treatment hasn't really changed since then, and I think you'll be comforted to read the 'real time' posts of women who were, at that time, exactly in the same place as your mother is now. The thread loads very slow slow slow because it is so long, so be patient with that. I think these stories of chemo and losing their hair and radiation challenges will prepare you for what is likely coming for your mom. The positive message to you on this thread is that the cancer treatments are all do-able, and not near as bad as what you might fear they will be. And I'm pretty sure that all of these women posting back in 2008 and early 2009 are still alive. Several of them went into remission after their initial chemo and radiation, and their cancer has NEVER returned. They have returned to their jobs and pre-cancer lives. There is hope, justifiable hope.

    I echo what others have said; do NOT read all of the grim statistics on the internet about papillary serous cancers, as anything older than 2010 is completely outdated. (((hugs))). Post again and ask us anything and we'll try and help.

    Yes, so much information in
    Yes, so much information in these posts. I have a lot to thank you ladies for as so much of the information I have is from this site and the experience of you brave ladies. So many messages of hope and it's wonderful to hear!

    We met her Gynecological Oncologist yesterday and he was everything I imagined. Very thorough and very intent on getting treatment started ASAP. He was so thorough I couldn't even think of any follow-up questions to ask him. Looks like the plan is get started on blood work for surgery, the cancer antigen test, a CT scan, and then the surgery. He said only after surgery can they decide if she'll need chemo or radiation or a chemo/radiation combo. Looks like we'll be busy bees for a little bit but that's perfectly fine. I appreciate his want to move along as quickly as possible. I really feel like Mom is in great hands. He said there's a good chance we caught this early and was very pleased she went into see her doc at the first sign of trouble. Of course, it's gonna be a little while to get more info on exactly what she's dealing with but we're moving along.
  • ValT
    ValT Member Posts: 6
    #7
    Girlpower said:

    Yes, so much information in
    Yes, so much information in these posts. I have a lot to thank you ladies for as so much of the information I have is from this site and the experience of you brave ladies. So many messages of hope and it's wonderful to hear!

    We met her Gynecological Oncologist yesterday and he was everything I imagined. Very thorough and very intent on getting treatment started ASAP. He was so thorough I couldn't even think of any follow-up questions to ask him. Looks like the plan is get started on blood work for surgery, the cancer antigen test, a CT scan, and then the surgery. He said only after surgery can they decide if she'll need chemo or radiation or a chemo/radiation combo. Looks like we'll be busy bees for a little bit but that's perfectly fine. I appreciate his want to move along as quickly as possible. I really feel like Mom is in great hands. He said there's a good chance we caught this early and was very pleased she went into see her doc at the first sign of trouble. Of course, it's gonna be a little while to get more info on exactly what she's dealing with but we're moving along.

    Don't give up
    Reading this board is so valuable. Sadly cancer is an INDIVIDUAL disease. Many people don't have access to the latest thinking. You have to keep digging, it is a journey. Good luck and stay tuned here.

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