The more I know the less I feel like I know.

ChristinaWH
ChristinaWH Member Posts: 8 Member
in Uterine/Endometrial Cancer #1

Hi all,

I had FIGO grade 1 adenocarcinoma with hysterectomy in 2019. I had bad medical care and my ovaries were left in place. After diagnosis I was referred to Siteman, had a PET scan that showed nothing and was monitored the next three years. In spite of multiple appointments due to cramping/bloating the only test ordered was an ultrasound. They assured me this cancer would not come back.

At my final three year follow up I showed my doctor a lymph node in my neck that was biopsied and turned out to be lymphoma. I was told at Siteman that I had stage III lymphoma which was in my neck and abdomen. I questioned them about the abdomen being endometrial cancer and they told me absolutely not. Thankfully after a second opinion at the Mayo Clinic it was confirmed that I had stage 1 lymphoma and recurrent endometrial cancer. I had surgery to remove 4 spots of recurrent endometrial cancer in my abdomen and am currently doing carboplatin and taxol (completed 2 out of 6 tx). I am taking treatment at Siteman because it is close to home. I will follow up at Mayo once treatment is complete.

The more I read here the less informed I feel that I am. I have never had a chest x-ray and it seems like there is no definitive answer on the possibility of cure or if this will be treated long term. My cancer is estrogen dependent so I believe I will be treated with medication after the chemo. My doc doesn't want to talk about next steps until we get a follow up scan after my third chemo.

I have had three rounds of chemo for the lymphoma, surgery to remove the node in my neck, surgery to remove cancer in my abdomen and my ovaries which were cancer free and now chemo for endometrial cancer.

I am 54 and some days I feel hopeful and some hopeless. Just hoping someone can share their experience with all of this. Is there more I need to know or do to navigate?

Comments

  • Icantbelieveit
    Icantbelieveit Member Posts: 27 Member
    #2

    Hey, I'm so sorry you are in this situation right now. I'm still fairly new to the endometrial cancer stuff, but I wanted to let you know I hear you. I don't have any answers here, but I'm hoping some of our more seasoned members will be able to be more informative than my pathetic attempt.

    You are an absolute WARRIOR with all of this and I think getting your treatment close by where it's convenient and then doing a follow-up at Mayo is definitely the way to go.

  • Forherself
    Forherself Member Posts: 1,013 Member
    #3

    Welcome ChristinaWH. So sorry to read your story. I wonder if you had a hysterectomy and they discovered cancer after a gynecologist did the surgery? It would be unusual for a gynecological oncologist to leave ovaries but I think it does happen. That means you were not completely staged. Unfortunately, there are no set treatments for early stage endometrial cancer. It is most common that no treatment is given for endometrioid endometrial cancer 1A. Other women on this board have recurred with stage 1A too. I hope you had a PET scan of your chest and abdomen. That would be why you didn't have an X ray. They can see more with a PET scan. They don't do more imaging than indicated because it uses a lot of radiation which can cause disease in itself. There is lots of hope for you. Endometriod tends to be slower growing. You have had an opinion from one of the top cancer centers in the US. Your case really demonstrates why a second opinion is so important. You have done what you need to do. I hope the chemo is tolerable. There is lots of advice on here to deal with the side effects of chemo. You have had so much to deal with! No wonder you feel confused. We are here to help and answer questions. It sounds to me like you have done everything you can. I am soooo glad you got a second opinion. Your lymphoma is early stage too. Hugs to you.

    Sue

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,485 Member
    #4

    ChristinaWH, I am truly sorry to hear all that you have been going through. I know we are asking you a lot of questions, but do you go to Siteman because it is local and Mayo is a trip?

    Personally I think you have every right to ask about what the 'plan'. You want to understand what you are dealing with and "if the a then b, or if the b then c" scenarios. What about after the end of the 3rd chemo? What would they be looking for and what are the indications? They are fare questions and a doctor should be willing to sit and explain it.

    Please check in and let us know what is going on. We are here for you.

  • ChristinaWH
    ChristinaWH Member Posts: 8 Member
    #5
    https://csn.cancer.org/discussion/comment/1708942#Comment_1708942

    Thank you so much for your support. This is a club none of us wanted to be in!

  • ChristinaWH
    ChristinaWH Member Posts: 8 Member
    #6
    https://csn.cancer.org/discussion/comment/1708944#Comment_1708944

    Sue,

    I did have a hysterectomy with an OB-gyn. If I had known what I know now I would have never let her perform the surgery but I have learned a lot. I was never properly staged. I am so very thankful for my second opinion! Chemo is a challenge but not nearly as bad as the chemo for the lymphoma so I can manage it. I have had many PET scans. Lots of the spots of endometrial cancer were too small to even show up on my scans. According to the scan I had one spot in my abdomen. This is such a sneaky cancer!!

  • ChristinaWH
    ChristinaWH Member Posts: 8 Member
    #7

    NoTimeforCancer,

    We are waiting for the scan after the third treatment to see if the chemo eliminates a small nodule that they didn't see or remove during surgery. If it is gone then I know the treatment is working and if it still there then we will have to pivot. Hope to heck it's gone!!!

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