follow-up after surgery for high-grade serous carcinoma?

smargaret
smargaret Member Posts: 15
edited December 2019 in Uterine/Endometrial Cancer #1

Dear wonderful people on this discussion list,

I have good news, I think: after surgery a week and half ago the pathology report said that the cancer had not spread beyond the uterine wall; the tumor was less than 1 cm, so it was caught early.  The stage is listed as 1a.

I'm really happy (ecstatic is more like it) with this report.  But I have a question.  The surgeon said no follow-up was necessary--no radiation, no chemo, just check-ups every three months. While I'm pleased with that as well, my understanding of this aggressive strain of cancer was that they always followed up with radiation at the least.  I'm wondering what the experience is of others on this list.  I want to be prepared with the right questions for my post-op appointment.

Thanks as always!

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Comments

  • cmb
    cmb Member Posts: 1,001 Member
    Good news

    Great to hear that your cancer was caught early, although it is one of the more aggressive types of uterine cancer.

    I'm sure others will join in, but in the meantime I suggest you read the section on high-risk endometrial cancers: treatment after surgery in the NCCN Guideline for Patients at

    https://www.nccn.org/patients/guidelines/uterine/51/index.html

    You'll see the "watch and wait" is only recommended in a very small number of patients. Your doctor may feel you fit this category, but it’s a topic warranting further discussion with him.

  • Armywife
    Armywife Member Posts: 451 Member
    Second Opinion

    So glad to hear your good news!  My suggestion for you would be to get a second opinion. There was a great deal of confusion when my pathology came back and I asked for and received a second opinion from MD Anderson.  I believe most insurance situations allow second opinions.  This is an important decision, and it's important for your healing and your peace of mind to have clarity about your treatment plan.  (At first I was told medicine, then radiation, then chemo and radiation.  Upon completion of chemo, I went back again for a second opinion, and it was decided after much debate to reserve radiation for recurrence.  I did not have serous; rather endometrioid endometrial adenocarcinoma.  First pathology said Stage IIIA, Grade 1.  Second opinion said Stage IVB, Grade 2.  Can't get much worse than that, so I didn't get a third opinion.)  

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    Please go get a second

    Please go get a second opinion at a major cancer center as to whether or not you need chemo or radiation.  I believe that standard of care for your malignancy, at your stage, is 6 rounds of carbo/taxol, followed by vaginal brachytherapy.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    my story

     I, too, was a 1a USPC in 2017 and was going to do only observation. However, my oncologist and the ladies on this board convinced me to do more. I have had some recurrence even with followup treatment. This is a stubborn cancer.

    If I were you, I'd get another opinion. 

  • Quilter_1
    Quilter_1 Member Posts: 117 Member
    I had a good outcome

    I had a good outcome diagnosed as 1a, but, my oncology gynecologist/surgeon advised me to have 6 rounds of carbo/taxol chemo and referred me to a radiation oncologist, who recommended 32 imrt pelvic radiation and 6 brachytherapy treatments. I had all of these treatments and so far, 9 months after treatment, I am doing well.  Serous carcinoma, UPSC, is a very rare and aggressive form of uterine cancer.  Get a second opinion.

  • Forherself
    Forherself Member Posts: 1,013 Member
    Good news but

    It is good your cancer did not spread outside the uterius.  But when describing the tumor they usually say what percentage to malignancy penetrated the uterine wall.  When you say it was 1 cm does it mean it penetrated the wall 1cm?   Stage 1A has lots of levels.  I think determining treatment is better when using the percent of unterine wall invasion.  It quickly becomes the standard of treatment to have what Zsa Zsa describes.  All 1A 's are not the same.  I would get a second opinion.  And read your path report again.  What does the 1cm mean?  

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    1A

    Glad to hear your good news! That being said I too would get a second opinion. I have seen too many people who were just doing the watchful waiting only to find out their cancer came back within a year. Insurance companies must cover second opinions. Call your insurance company and ask about coverage for second opinions. Your doctor should be respectful of getting a second opinion- you are advocating for yourself by getting a second opinion. Your doctor can suggest comprehensive cancer center for second opinion or your insurance company can help you too. Yes, like CMB suggests read the NCCN guidelines on your type, stage and grade of cancer. 

    Lori

  • I would simply ask my doctor, are you sure?

    I had more/larger involvement in my uterous and microscopic findings in one lymph node.  I had 6 chemo cycles, no radiation.  Since I never had radiation, I can't speak with authority, but it seems like radiation can cause lasting serious effects.  Ask your doctor, but I would not hope for radiation for backup.  My doctor is casual, he's a watch for symptons, and so far, so good, 4 years in December was my surgery, and I'm grateful that my doctor isn't pushing scans, or tests.  Just watching. Also, it depends on the pathology report of cell findings, I have 25% serous cell mixed with endometrial cells.  Serous cells are the more agressive, so look at the report to see if you have any mixed cells or strictly endometrial.

     

  • Red Corvette
    Red Corvette Member Posts: 114 Member
    1A

    Very good news for you indeed with a staging of 1A but definitely try for a second opinion. As the warrior ladies have said, high grade USPC (uterine serous papillary carcinoma) is sneaky. When Mrs.Red was diagnosed 1A USPC with no lymph node involvement and we questioned the gyne/oncoligist about why not just watch instead of chemo and bracytherapy, he said "no way would I let me wife just watch with no treatment" Telling.

    Red

  • MAbound
    MAbound Member Posts: 1,168 Member
    No Nonsense Advice

    As you can see from the prior posts, there's been enough experience with "caught early" serous uterine cancer that none of us feel comfortable with "watch and wait" treatment following surgery. This type of uterine cancer is a real **** that you need to be equally aggressive going after as it is about coming back. Front line treatment is your best shot at a cure, so even though chemo and/or radiation is not fun, I wouldn't feel relieved about getting out of doing it for your diagnosis. Get a second opinion, even a third if you need a consensus, but your surgeon's recommendation for just check-ups is raising a lot of alarm bells here! 

  • jjtrim
    jjtrim Member Posts: 27
    Another vote for a 2nd Opinion

    After surgical staging, my mother was diagnosed a stage 1a UPSC, confined to an endometrial polyp.  Her oncologist told her no further treatment was necessary. We were not given an alternative. My mother's cancer recurred in 14 months with widespread metastasis, now stage 4B.  Please, please, please get a second opinion - and strongly consider the recommended adjuvant therapy for this agressive cancer - 6 carbo/taxol and brachy.  Of course, there are plenty of people who will recur even with the adjuvant therapy, but at least you will have some peace of mind that you did everything you could.  

  • kansasgal
    kansasgal Member Posts: 122 Member
    10 years later

    I remain NED. I believe my UPSC was staged at 1a, although I also had endometrial adenocarcinoma staged at 1b. Following two "face-to-face" second opinions and one conducted by e-mail with a gyn/onc at Mayo, I opted to add chemotherapy and brachytherapy to my open abdomen hysterectomy surgery. Please read my "About me" page.

    Sending big hugs as you contemplate the possibility of further treatment.

    Sally

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    1a is good news

    Glad to hear you caught it early.  As others have said, UPSC is nothing to play around with.  (No cancer is!) I had the ordinary endometroid adenocarcinoma, grade 1, stage 1a in 2012.  Had surgery and brachytherapy and went my merry way.  6 years later, recurrence was found in the pelvic wall, hip joint, and both lungs, leading to low dose carbo/taxol with radiation, followed by full dose carbo/taxol - and I'm still not NED, as the hip tumor is persistent.  You do NOT want a recurrence!  Please do get another opinion, and best of luck!

  • smargaret
    smargaret Member Posts: 15
    cmb said:

    Good news

    Great to hear that your cancer was caught early, although it is one of the more aggressive types of uterine cancer.

    I'm sure others will join in, but in the meantime I suggest you read the section on high-risk endometrial cancers: treatment after surgery in the NCCN Guideline for Patients at

    https://www.nccn.org/patients/guidelines/uterine/51/index.html

    You'll see the "watch and wait" is only recommended in a very small number of patients. Your doctor may feel you fit this category, but it’s a topic warranting further discussion with him.

    Thanks so much

    Thanks so much for this resource!

  • smargaret
    smargaret Member Posts: 15
    edited December 2019 #16

    Good news but

    It is good your cancer did not spread outside the uterius.  But when describing the tumor they usually say what percentage to malignancy penetrated the uterine wall.  When you say it was 1 cm does it mean it penetrated the wall 1cm?   Stage 1A has lots of levels.  I think determining treatment is better when using the percent of unterine wall invasion.  It quickly becomes the standard of treatment to have what Zsa Zsa describes.  All 1A 's are not the same.  I would get a second opinion.  And read your path report again.  What does the 1cm mean?  

    Path report

    Here's what it says with regard to the uterine wall.  My understanding is that this is why the surgeon said no radiation or chemo necessary, but I want to check with the oncologist at my post-op.

      Uterus, endometrium, hysterectomy and bilateral salpingo-oophorectomy
    -  HIGH GRADE SEROUS CARCINOMA, MICROSCOPIC FOCI, < 1 CM
    -  TUMOR LIMITED TO ENDOMETRIUM (NO MYOMETRIAL INVASION IDENTIFIED), pT1a
    -  NEGATIVE FOR LYMPHOVASCULAR INVASION
    -  PARAMETRIUM, CERVIX, OVARIES AND FALLOPIAN TUBES NEGATIVE
    -  AJCC PROGNOSTIC STAGE GROUP (8th Edition 2018):  pT1a N0 M0 = IA

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    jjtrim said:

    Another vote for a 2nd Opinion

    After surgical staging, my mother was diagnosed a stage 1a UPSC, confined to an endometrial polyp.  Her oncologist told her no further treatment was necessary. We were not given an alternative. My mother's cancer recurred in 14 months with widespread metastasis, now stage 4B.  Please, please, please get a second opinion - and strongly consider the recommended adjuvant therapy for this agressive cancer - 6 carbo/taxol and brachy.  Of course, there are plenty of people who will recur even with the adjuvant therapy, but at least you will have some peace of mind that you did everything you could.  

    jjtrim, I was thinking

    jjtrim, I was thinking exactly of what happened to your mother when I was writing urging a second opinion, but I didn't want to say it.  Thank you for chiming in.

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    kansasgal said:

    10 years later

    I remain NED. I believe my UPSC was staged at 1a, although I also had endometrial adenocarcinoma staged at 1b. Following two "face-to-face" second opinions and one conducted by e-mail with a gyn/onc at Mayo, I opted to add chemotherapy and brachytherapy to my open abdomen hysterectomy surgery. Please read my "About me" page.

    Sending big hugs as you contemplate the possibility of further treatment.

    Sally

    Thank you for coming back to

    Thank you for comiung back to post, Sally.  You and others like you offer great hope to those of us who are more recently diagnosed.

  • Armywife
    Armywife Member Posts: 451 Member
    kansasgal said:

    10 years later

    I remain NED. I believe my UPSC was staged at 1a, although I also had endometrial adenocarcinoma staged at 1b. Following two "face-to-face" second opinions and one conducted by e-mail with a gyn/onc at Mayo, I opted to add chemotherapy and brachytherapy to my open abdomen hysterectomy surgery. Please read my "About me" page.

    Sending big hugs as you contemplate the possibility of further treatment.

    Sally

    Thank you!

    Sally, thank you!  I am so grateful when I see long term survivors coming back to post.  It gives all of us great hope!!

  • jjtrim
    jjtrim Member Posts: 27
    zsazsa1 said:

    jjtrim, I was thinking

    jjtrim, I was thinking exactly of what happened to your mother when I was writing urging a second opinion, but I didn't want to say it.  Thank you for chiming in.

    Please share my mom's story

    Please share my mom's story whenever it can help someone else. By sharing and learning from others, I'm convinced this forum has saved and extended so many people's lives. Thank you for thinking of my mom.

  • Forherself
    Forherself Member Posts: 1,013 Member
    smargaret said:

    Path report

    Here's what it says with regard to the uterine wall.  My understanding is that this is why the surgeon said no radiation or chemo necessary, but I want to check with the oncologist at my post-op.

      Uterus, endometrium, hysterectomy and bilateral salpingo-oophorectomy
    -  HIGH GRADE SEROUS CARCINOMA, MICROSCOPIC FOCI, < 1 CM
    -  TUMOR LIMITED TO ENDOMETRIUM (NO MYOMETRIAL INVASION IDENTIFIED), pT1a
    -  NEGATIVE FOR LYMPHOVASCULAR INVASION
    -  PARAMETRIUM, CERVIX, OVARIES AND FALLOPIAN TUBES NEGATIVE
    -  AJCC PROGNOSTIC STAGE GROUP (8th Edition 2018):  pT1a N0 M0 = IA

    Very good news considering

    The < means less than 1cm, and it says microsopic so small.   And there is no myometrial invasion.   The levels of 1A can include up to 50% myometrial invasion and you have 0%.   According to all reading, Uterine serous carcinoma limited to the endometrium does include observation only as the treaatment after full surgical staging.  Your doctor knows that the prognosis does not change when recieving treatment.   The recurrence rate is the same for some reason.  This explains your doctors recommendation.  AND the extremely difficult decision ahead for you.  To have treatment or not.  The second opinion will be very helpful in making that decision.  Also, I would request that your tumor cells be tested for genetic mutations.   It can help determin the aggressiveness of your tumor.  I think there was an article recently on the board that said this testing is now considered useful and is covered by insurance.