Newly diagnosed Stage III 1A

AnnieBailey
AnnieBailey CSN Member Posts: 4
in Uterine/Endometrial Cancer #1

My daughter-in-law (M) was diagnosed with endometrioid adenocarcinoma after finding it in her ovary and fallopian tube while undergoing infertility treatments. My son, her husband, is a testicular cancer survivor (he also had stage 3 cancer). We are beginning this awful journey once again and these boards and advice from others was crucial in saving my sons life 13 years ago, not to mention, the support and guidance I received. “M” had her ovary and tube removed three weeks ago, then had a radical hysterectomy one week ago. The pathology report came back negative in the lymph nodes but “lymphatic invasion present”. I suspect contamination and seeding from either the ovary removal or her previous hysteroscopy. We meet with the surgeon/oncologist today. I am looking for any guidance in next steps, recommendations for the best cancer treatment centers, any questions we should ask today etc. any input is greatly appreciated.

Comments

  • Forherself
    Forherself CSN Member Posts: 1,039
    #2

    Welcome AnnieBailey. Sorry to read about your DIL diagnosis. She must be youngish as she was having infertility treatments. Youngish is good for prognosis. She also has endometrioid which is less aggressive. You don't mention grade as sometimes endometrioid can be a higher grade. I have read that this cancer often starts in a fallopian tube. Hopefully they will do testing to see grade and mutations present. That can affect treatment. Lymphatic invasion means the cancer cells have infiltrated lymph and or blood vessels. They are so small pathologists cannot tell the difference. You have travelled this road before with your son, so you know there are lots of decisions to be made. Treatment has really improved in the last 5 years for tubal and ovarian cancer so that is good. Second opinions are often sought if there is different treatment options. Testing of the cell mutations can guide your decisions so ask about what mutations she has. I hope you have found a gynecological oncologist. I am an RN and was surprised to find that they exist. They are surgeons and oncologists. I was at a University hospital and was very happy with my care. Feel free to ask any questions.

    .

  • AnnieBailey
    AnnieBailey CSN Member Posts: 4
    #3
    https://csn.cancer.org/discussion/comment/1722462#Comment_1722462

    thank you so much. M is 35 years old, negative for Lynch syndrome and no family history. She is grade 2. We just got home from meeting with her surgeon who is a gynecology oncology surgeon. She presented her case to the tumor board who advised external radiation for five weeks, everyday Monday through Friday. I had thought that HDR brachytherapy is the norm but I am thinking maybe we should get a second opinion as well. They want her to start in two weeks to allow her time to heal from the hysterectomy.

  • Forherself
    Forherself CSN Member Posts: 1,039
    #4

    There are women here who have had that treatment. There is good advice about probiotics if external radiation is used. You can search here for posts about both treatments. Tumor boards are good, almost like a second opinion. But doctors don't mind at all your getting another opinion. Hard to take it all in, but hopefully someone who has had this treatment will post.

  • AnnieBailey
    AnnieBailey CSN Member Posts: 4
    #5

    Thank you so much for your advice! I will search here for treatments etc. I love my daughter-in-law so much.

  • NoTimeForCancer
    NoTimeForCancer CSN Member Posts: 3,565
    #6

    Hey AnnieBailey, I'm sorry to hear about your DIL. She is very young and I hate to see that.

    You can always ask for a second opinion, but I would suggest looking up the NCCN most recent guidelines which I attached. There is a patient friendly version on their site you can sign in to, but you may be familiar with the 'language'.

    My cancer was UPSC, so aggressive but an early stage. The treatment at that time was the 'sandwich' of chemo/radiation (external and brachy)/chemo. I know that they would treat it differently today.

    Ask anything.

    NCCN uterine.pdf
  • Forherself
    Forherself CSN Member Posts: 1,039
    #7
    https://csn.cancer.org/discussion/comment/1722476#Comment_1722476

    Wow. What a great source of information. It will take awhile to puruse it all. But from what I read M has tubal and ovarian cancer which might be different treatment. Am I correct AnnieBailey? No cancer in the endometrium?

  • NoTimeForCancer
    NoTimeForCancer CSN Member Posts: 3,565
    edited April 30 #8
    https://csn.cancer.org/discussion/comment/1722479#Comment_1722479
    ovarian.pdf

    Oops - I was reading fast. There is one for every cancer there so ovarian would definitely being spelled out like this. These get updated as the standard of care changes. It is why immunotherapy is now considered a primary treatment and not just experimental in areas. A lot of work to do in research.

  • ilovedaisies
    ilovedaisies Member Posts: 12
    #9
    https://csn.cancer.org/discussion/comment/1722476#Comment_1722476

    Woowowow, NoTimeForCancer!!! The NCCN link is an absolutely INCREDIBLE resource. And there’s a Patient Guide and Webinar for each, it seems, too.

    How I wish I had this, when I was going thru the chondrosarcoma with Mayo or even Lung Cancer if my nodes turn out to be that. It helps me in three areas. Bless you. Thank you SO, so very, very much.

    I wish these needed resources were shown when signing up for this blog, somehow, as we don’t even know what questions to ask. Everyone needs to know about these!

    Blessings!

    Linda

  • AnnieBailey
    AnnieBailey CSN Member Posts: 4
    #10

    thank you all so much!

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