Stage 2 endometrioid, "suspicious" for LVSI

Tamlen
Tamlen Member Posts: 343 Member

Hello, everyone -

My total hysterectomy was 5 weeks ago via DaVinci and I'm feeling great.

Path report came back as Stage 2 with 99% (!) myometrial invasion, 2cm tumor in cervix, lymph nodes negative, but "foci suspicious for LVSI." My doctor puts me in the high-intermediate risk range for recurrance. I know from reading that LVSI changes the game considerably with even early-stage endometrial cancer.

The tumor board is recommending external pelvic radiotherapy + brachytherapy and my gyn/onc is arranging a consult with a radiation onc so that my million questions can get answered before we form a plan. Time is, of course, of the essence.

I am interested in hearing from others here who've been diagnosed early stage cancer endometrioid type (the "run of the mill" endo cancer) with LVSI:

  • What was/is your treatment plan?
  • How long ago were you treated and how are you doing now?
  • Any recurrence?
  • Anything you recommend I know about or do before deciding on a treatment plan?

Thank you so much!

TJ

Comments

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    I have regular endometrial

    I have regular endometrial adenocarcinoma. I also was suspicious for lymph vascular invasion though further testing (staining) didn't support that. The surgeon said I would be treated as if I did have LVI to be on the safe side. I was 3a as I had a few cells on my left ovary, pelvic wash and lymph nodes were clear. I don't have my pathology report handy but I think myometrial invasion was about 75%. 

    It was decided that I would receive 6 doses of carbo/taxol chemo and then 5 weeks (25 times) of targeted beam radiation. No bracytheraphy. As I  turned out to be allergic to Taxol I'm receiving 8 doses of adriamyacin and carbo. I finish in April with chemo then onto the radiation. I am anemic from the adriamyacin but otherwise ok. 

    I had my operation in early October and the two subsequent CT scans have been clear. 

     

     

     

  • Tamlen
    Tamlen Member Posts: 343 Member
    edited March 2018 #3

    I have regular endometrial

    I have regular endometrial adenocarcinoma. I also was suspicious for lymph vascular invasion though further testing (staining) didn't support that. The surgeon said I would be treated as if I did have LVI to be on the safe side. I was 3a as I had a few cells on my left ovary, pelvic wash and lymph nodes were clear. I don't have my pathology report handy but I think myometrial invasion was about 75%. 

    It was decided that I would receive 6 doses of carbo/taxol chemo and then 5 weeks (25 times) of targeted beam radiation. No bracytheraphy. As I  turned out to be allergic to Taxol I'm receiving 8 doses of adriamyacin and carbo. I finish in April with chemo then onto the radiation. I am anemic from the adriamyacin but otherwise ok. 

    I had my operation in early October and the two subsequent CT scans have been clear. 

     

     

     

    What good news that your

    What good news that your scans have been clear after everything you've been through.

    I haven't yet had the chance to ask my gyn/onc why radiation instead of chemo/radiation, so I am puzzling over why some on this forum have had that protocol (chemo + radiation). Are you able to say why they recommended chemo in addition to radiation?

    And which kind of targeted beam radiation did you have -- IMRT?

    Thanks so much for replying to my questions.

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    edited March 2018 #4
    Chemo targets the risk of

    Chemo targets the risk of systemic/distant metastases, which pelvic radiation can't target. I guess it comes down to determining when that risk is high enough to risk the side effects of chemotherapy.

    I think part if the problem is that studies have not yet provided black and white guidance. For example, my rad onc did go ahead and recommend radiation, but he also made clear that studies have not proven that adjunctive radiation (given up front to prevent recurrence) prolongs life. With that kind of ambiguity, different doctor's are going to judge the risks and benefits differently.

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    edited March 2018 #5
    TJ, chemo is effective for moderate to aggressive cancer

    and not effective for a grade one cancer. If the cells don’t divide quickly, like they do with uterine papillary serous carcinoma, then chemo won’t work. The garden variety uterine cancer, called endometriod, is usually a grade one cancer, although it can be a grade 2 or even an aggressive grade 3 cancer. I assume that your cancer is a grade one. Radiation treatment would therefore be an appropriate treatment.

    Warm Wishes,

    Cathy

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    Tamlen said:

    What good news that your

    What good news that your scans have been clear after everything you've been through.

    I haven't yet had the chance to ask my gyn/onc why radiation instead of chemo/radiation, so I am puzzling over why some on this forum have had that protocol (chemo + radiation). Are you able to say why they recommended chemo in addition to radiation?

    And which kind of targeted beam radiation did you have -- IMRT?

    Thanks so much for replying to my questions.

    My oncologists are following

    My oncologists are following the NCCN guidelines for endometrial cancer. For stage 3a adjuvant treatment is systemic therapy and or external beam radiation, and possibly brachytherapy. My surgeon explained that at surgery she thought I was Ib as she didn't see the couple of cells on my ovary.  But with that and inconclusive findings on LVI, the doctors felt systemic therapy (chemo) and targeted radiation where the way to go. As my tumor was in the upper uterine segment they thought brachytherapy  was not needed. So you might ask your doctor what the NCCN guidelines say for your particular stage.

    I haven't had radiation yet, but it will be IMRT.

  • MoeKay
    MoeKay Member Posts: 493 Member
    edited March 2018 #7

    I think I answered your first three questions in my response to your March 4, 2018 post.  However, as far as your last question, I would recommend that you obtain an independent pathology review at another institution.  Also, I would suggest that you seek a second opinion from another gyn-onc on your proposed treatment plan.  I got second opinions on both pathology and treatment and, to this day, I feel it was one of my best decisions. 

    Good luck to you!

  • Tamlen
    Tamlen Member Posts: 343 Member
    Abbycat2 said:

    TJ, chemo is effective for moderate to aggressive cancer

    and not effective for a grade one cancer. If the cells don’t divide quickly, like they do with uterine papillary serous carcinoma, then chemo won’t work. The garden variety uterine cancer, called endometriod, is usually a grade one cancer, although it can be a grade 2 or even an aggressive grade 3 cancer. I assume that your cancer is a grade one. Radiation treatment would therefore be an appropriate treatment.

    Warm Wishes,

    Cathy

    Yes, Grade 1

    Ah! I didn't know that about cell division -- really helpful piece of information. My cancer is, indeed, Grade 1. Thank you!

    I've understood chemo as "systemic" and radiation as "targeted," but have been fumbling over how LVSI wouldn't be seen as systemic.

  • Tamlen
    Tamlen Member Posts: 343 Member

    My oncologists are following

    My oncologists are following the NCCN guidelines for endometrial cancer. For stage 3a adjuvant treatment is systemic therapy and or external beam radiation, and possibly brachytherapy. My surgeon explained that at surgery she thought I was Ib as she didn't see the couple of cells on my ovary.  But with that and inconclusive findings on LVI, the doctors felt systemic therapy (chemo) and targeted radiation where the way to go. As my tumor was in the upper uterine segment they thought brachytherapy  was not needed. So you might ask your doctor what the NCCN guidelines say for your particular stage.

    I haven't had radiation yet, but it will be IMRT.

    NCCN guidelines

    The recommended treatment is consistent with NCCN guidelines, yes. Still wish to understand why one treatment over another, though (Abbycat's post below offered a helpful piece of the puzzle).

    Thanks for the additional detail on your own case.

    This is an aside: The NCCN guidelines have been called into question again due to alleged conflicts of interest. Might not change much, but worth knowing about: https://www.cnn.com/2018/03/07/health/cancer-treatment-guidelines-study/index.html

  • Tamlen
    Tamlen Member Posts: 343 Member
    LisaPizza said:

    Chemo targets the risk of

    Chemo targets the risk of systemic/distant metastases, which pelvic radiation can't target. I guess it comes down to determining when that risk is high enough to risk the side effects of chemotherapy.

    I think part if the problem is that studies have not yet provided black and white guidance. For example, my rad onc did go ahead and recommend radiation, but he also made clear that studies have not proven that adjunctive radiation (given up front to prevent recurrence) prolongs life. With that kind of ambiguity, different doctor's are going to judge the risks and benefits differently.

    It's a quagmire, isn't it? My

    It's a quagmire, isn't it? My gyn/onc was clear that the adjuvant treatment proposed has not been shown to prolong life, though it does reduce recurrance. It sure has been a master's degree of learning crunched into two months!

  • christine8822
    christine8822 Member Posts: 40 Member
    second opinion

    Hi, in summer 2015 i was diagnosed with stage IIIC, grade 2 endometrioid cancer, because it was found in 3 of 17  pelvic lymph nodes. when it's found in your lymph nodes that jumps you to stage IIIC . At that time, the normal treatment is 6 rounds of carbo/taxol and 5 weeks of pelvic radiation. i had a "sandwich" protocol. 

    no recurrence since i finished treatment december 2015, but i am watched for 5 years.

    that's a weird line" foci suspicious..." what does that actually mean?? 

    get a second opinion from the best gynocological oncologist you can find. then make your decision and move forward. all blessings and best of luck.

  • pattiann45
    pattiann45 Member Posts: 22 Member
    edited April 2018 #12
    same as you

    Hello,

     

    I am somewhat similar to you.  I was diagosed 1/2017 with stage 2 grade 2 EC.  I had 60 percent wall invasion, and also had a foci suspicious for LVSI.  I ended up getting 4 path reports over that foci suspicious for LVSI, and the only one that thought this was the original patholologist. When you have robotic surgery sometimes the balloon that they use can cause fragments of tumor to move.  There is quite a bit of research on this and the jury is still out.  I have done so much research on this because I was completely concerned over it.  So I could go on and on about it, but generally what is more concerning is extensive or even unequivocal focal LVSI, rather than a single focus, which was what mine was said to be. I was treated with the plan that they are suggesting for you.  However, I ventured out on my own and found some research and convinced them to give me 4 cycles of carbo/taxol after completing radiation. Since this time the PORTEC 3 trial really did not find evidence of value in adding chemotherapy to stage 2 ECs, however, they do not have any sub group analysis yet so you never know.  I don't regret it, and I am almost 15 months NED.  I am in and out of this forum, should come on more, so feel free to email me if you would like to:  patrkuenzi@gmail.com. I am a medical professional and have spent the past 15 months making EC my primary focus, so I may be able to help you with more questions.  Along with my own personal experience of course.

     

  • Soup52
    Soup52 Member Posts: 908 Member
    Hmm Pattiann, now you are the

    Hmm Pattiann, now you are the second person that I have read about who had radiation such an oddball. So far this treatment has worked for me who was high grade 3C with clear cell .

  • pattiann45
    pattiann45 Member Posts: 22 Member
    radiation

    Hi, not sure what you mean about the radiation?   For stage 2 it is the first recommended treatment.  What stage were you?  Hope all is well:)

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    I had Stage II UPSC and no

    I had Stage II UPSC and no radiation was recommended; just chemo. I don't think there is a standard treatment based on what I've seen on this board. 

    Love,

    Eldri 

  • pattiann45
    pattiann45 Member Posts: 22 Member
    standard treatment

    You are correct.  It is recommended treatment for stage 2 EC grade 1-2.  Chemo is not usually given to Stage 2 EC low grade, only with high risk (LVSI, outer third myometrial invasion, over 60 yo). 

  • Soup52
    Soup52 Member Posts: 908 Member

    radiation

    Hi, not sure what you mean about the radiation?   For stage 2 it is the first recommended treatment.  What stage were you?  Hope all is well:)

    Oops I need to remember to

    Oops I need to remember to proofread my posts. Part of my post wasn’t there so didn’t make sense . I had radiation after surgery and then followed with 6 rounds of chemo. Most of the people on here either have radiation after chemo or have the sandwich treatment with radiation between chemo.