Newly diagnosed-Endometrial Serous Carcinoma-1A

larsonk5
larsonk5 Member Posts: 2

Just had surgery on 09-16-2021 at Mayo. Total Hysterectomy, Serous Carcinoma of the Endometrium Stage1A. No cancer found in ovaries, tubes, lymph nodes or omentum. Treatment plan was chemo and radiation. I had a anaphylactic reaction after 4 minutes of Taxol. Choosing to continue with just the brachytherapy radiation. Hoping that the cancer will not appear anywhere else. Follow up with chemo Dr. and Gynecologist every three months for pelvic exams and CT scan every 6 months. Anyone else have this type of Serous carcinoma that could give me any advice.

Comments

  • Forherself
    Forherself Member Posts: 959 Member
    edited November 2021 #2
    Welcome to the board

    And so sorry to hear about your diagnosis and problems.  There is lots of help here.  I hope other women respond to your experience with Taxol.   You are receiving care at an excellent facility.   One of the hardest things I learned about cancer is the unknown.  I suspect you are feeling that right now too.  And none of us know what the future holds.  You didn't mention your myometrial invasion %.   That is important.  And tumors in the lower portion of your uterus are more likely to recur.  AND genetic testing can help determine your prognosis.  Did you have any genetic testing?  And are you p53 positive?  Some women with Serous 1A here have recurred, and some have not.  I just wonder if there isn't another chemotherapy agent available.  Did they discuss that with you?

  • Maxster
    Maxster Member Posts: 102 Member
    edited November 2021 #3
    I was diagnosed with serous

    Serous uterine cancer is very aggressive.  I would go with the most treatment I could tolerate. The research recommends 6 rounds of carbo/taxol, each three weeks apart with brachytherapy on the off weeks times 3 or 4.  If you cannot tolerate taxol, find another chemo drug.  This cancer can spread easily.  Do the radiation.  I am two years since diagnosis and 1.5 years since my last radiation.  No recurrence.  I was stage 3C so more advanced than you.  But the tratment does not differntiate by stage.

  • FourBee
    FourBee Member Posts: 52 Member
    edited November 2021 #4
    Serous Carcinoma

    Dear larsonk5,

    I am so glad that you found this board to reach out to. I strongly suggest that you start reading prior posts over the last ten years about your cancer type which is really aggressive (there are posts on the Ovarian board about it, too). You are so fortunate to have found your cancer early. Debulking (removal) and staying current on research is key.

    Even at your early stage, I would suggest that you look into clinical trials. Some trials won't take you depending on the type of treatments that you have had. And, seek 2nd and 3rd opinions even if that means sending your tumor slides half way across the country. Do not accept just one opinion on how to move forward. Gather information.

    I wish you good health and a long life.

    FourBee

  • Molly110
    Molly110 Member Posts: 191 Member
    edited November 2021 #5
    I was diagnosed with Stage 1

    I was diagnosed with Stage 1 serous two years ago.  I second the notion that this is a sneaky, aggressive cancer. It is also relatively rare, which means that not all gynecologists/oncologoists have experience treating it. The gold standard for treatment includes the chemo/radiation mix others have described. Like you, I had an anaphylactic response to the taxol. It happened and was over before I had time to really be scared, as the nurses knew exactly what to do and turned it off, etc. After pumping me full of even more steroids and benedry and waiting 30 minutes, they tried introducing the taxoll very slowly, and I was fine. It made my infusions last a couple of hours longer so that I could get it really slowly, and I also had to take 10 times the dose of dexamethasone the day before chemo and also lots of benedryl, but I had no further problems with the taxol. You and your doctor and care team may have decided that taxol is not right for you, but you may want to get a second opinion on not completing chemo with other drugs.

    Best wishes,

    Molly

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,351 Member
    Hello larson, we have one

    Hello larson, we have one woman here, who similarly had terrible experience with chemo and had to stop. She is still going strong years later, so never give up hope.  I know that is easier said than done, I still experience anxiety going to the gyn onc office! and they continue to look for new ways to help patients.  

    Please come back and let us know how you are doing and if you have questions.  Plenty of supportive women and family members are found here.

  • PontoonHappy
    PontoonHappy Member Posts: 12 Member

    I was diagnosed post hysterectomy 1/14/2022 with serous Stage 1A no myometrium invasion (limited to endometrium) , neg lymph nodes, neg peritoneal washings, no LVSI, etc. I am p53abn. Med oncologist said "no indication for postoperative chemotherapy" I am doing 3 VBT. I am having a hard time not stressing over recurrence because it seems so many received 6 chemotx and 3 VBT. I would really like to hear more from survivors who did VBT only. I am at a major cancer center. Medical Oncologist showed us 2022 NCCN guidelines specific to serous which say Stage 1A with negative peritoneal washings "Observe or 3 VBT (preferred)."

  • PontoonHappy
    PontoonHappy Member Posts: 12 Member

    The most recent NCCN recommendations differentiate by stage. I am stage 1A with negative peritoneal washings, recommendation is 3 brachytherapy no chemotherapy. Not that it can't recur but that chemotherapy does not improve chances of non-recurrence. Went to Sloan with second opinion at Fox Chase.

  • cmb
    cmb Member Posts: 1,001 Member

    PontoonHappy,

    Looks you got your second opinion after your initial posts in March. Good for you! We all have to be comfortable with the treatment that we pursue after surgery.

    I know that some of the ladies with serous responded last month - hopefully others can share their experiences with Stage 1A VBT only. (I can't weigh in on this since I had a different type and later stage of cancer).

    I hope the VBT treatments go smoothly for you.

  • Forherself
    Forherself Member Posts: 959 Member

    Hi Pontoon, nice to hear back from you. I have recently read this change in treatment for serous 1A. I am serous 1A no malignancy in the hysterectomy specimen. I had no treatment. My gynecologist said chemo did not change my chance of recurrence either so I didn't do it. That was almost 4 years ago, and I have had no recurrence. It is unsettling to not do treatment, but the fact is it doesn't change anything for 1A serous. All the best to you. You have done everything you can.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,351 Member

    Hello PontoonHappy, while I am a UPSC 1A, I was one who had the full monty of treatment almost 10 years ago of "sandwich", chemo-radiation (external/brachy)-chemo. Did I need all of it? I don't know. I hope there is more research done at the genome level to tailor treatment for each of us, but that has a long way to go on that. Be vigilant and continue to ask questions. As cmb said, I am glad you went and got a second opinion and that both are leading cancer centers.

    Hugs dear. We can all understand your anxiety of this disease.