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what would you do?

peachtea
peachtea Member Posts: 11
edited September 1 in Uterine Cancer #1

hi everyone! i'm posting for my mother who doesn't speak english very well. this is an amazing space, i've been reading/translating a lot of posts to her and she's told me that it's helped her feel much less alone. thanks to everyone who has posted here and shared their stories.

my mom was recently diagnosed with stage 1a endometrial adenocarcinoma, grade 3, but she has several concerning features such as isolated tumor cells in one of her sentinel lymph nodes, lower uterine segment involvement, and positive pelvic washing. (no LVSI though.) we've already seen 4 separate doctors, none of which can agree on which adjuvant treatment to give her. some of her doctors believe 5 weeks of radiotherapy should do the trick, others are advocating for a shortened course of carbo/taxol (3 cycles) + either 5 weeks of external beam radiation or 3 doses of brachytherapy. i hope this isn't the wrong place to ask, but if you were in this situation, knowing what you know now about all of the treatments that you've had to take, what would you do? we're having a lot of difficulty deciding.

thank you so much.

Comments

  • cmb
    cmb Member Posts: 751 **
    edited August 31 #2
    Welcome peachtea

    I'm sorry to hear that your mother has gotten such contradictory information from the various doctors. That always makes it so hard to know what to do next. But given what you've described, I'm going to ask if your mother is being treated outside of the United States.

    The reason I ask is that in the United States (and other countries that use the FIGO staging system) your mother would be Stage III, not Stage 1a, since there were tumor cells found outside the uterus. The most common treatment here would be six cycles of Paclitaxel/Carboplatin, often followed by internal and/or external radiation. This is especially true since your mother has an aggressive, Grade 3 form of endometrial cancer.

    It concerns me that only some doctors have recommended chemotherapy, and only for three cycles. But we've learned on this board that different countries have different treatment protocols.

    If you haven't found the link already in the FAQ at the top of the discussion topics, see the link for the NCCN Guidelines for Uterine Cancer here:

    https://www.nccn.org/patients/guidelines/content/PDF/uterine-patient.pdf

    It was just updated in 2021, so it contains some newer information than the previous version published in 2019. This publication describes the staging and treatment used here in the United States.

    Please come back and ask any more questions that you or your mother has. I'm sure that your mother appreciates all your help during this difficult time. 

  • MAbound
    MAbound Member Posts: 1,156 **
    Agree with CMB

    As a five year survivor of a stage 3, grade 3 endometrial adenocarcinoma I want to add my vote for CMB's advice.

    Radiation oncologists tend to emphasize their area of expertise for treatment and in your mother's case I'm concerned about the emphasis on radiation treatment. Radiation only treats what it is aimed at and her cancer as you've described it is not so easy as that. Once cancer cells leave the uterus, they can possibly be anywhere in the body. Chemo is a systemic treatment and more likely to get stray microscopic cancer cells that aren't seeable by the eye or on tests such as CT scans or MRIs. She needs both at the very least to have a chance for a cure. 

    We each react to treatment differently, so there are always variations in how different doctors ultimately treat us. Three rounds of chemo might be enough for some, but most of us get six. Sometimes radiation can be saved for if there is a recurrence, but there are parameters regarding degree of uterine penetration, location of origin, and presense of lymphovascular invasion that weigh in favor of having it as part of frontline treatment. Usually getting multiple opinions helps to firm up what treatment plan to adopt, but that doesn't seem to be the case for your mother. That's when turning to the NCCN Guidelines that CMB provided a link to should really help to act as sort of a tie-breaker for you.

    Good luck!

     

  • peachtea
    peachtea Member Posts: 11
    MAbound said:

    Agree with CMB

    As a five year survivor of a stage 3, grade 3 endometrial adenocarcinoma I want to add my vote for CMB's advice.

    Radiation oncologists tend to emphasize their area of expertise for treatment and in your mother's case I'm concerned about the emphasis on radiation treatment. Radiation only treats what it is aimed at and her cancer as you've described it is not so easy as that. Once cancer cells leave the uterus, they can possibly be anywhere in the body. Chemo is a systemic treatment and more likely to get stray microscopic cancer cells that aren't seeable by the eye or on tests such as CT scans or MRIs. She needs both at the very least to have a chance for a cure. 

    We each react to treatment differently, so there are always variations in how different doctors ultimately treat us. Three rounds of chemo might be enough for some, but most of us get six. Sometimes radiation can be saved for if there is a recurrence, but there are parameters regarding degree of uterine penetration, location of origin, and presense of lymphovascular invasion that weigh in favor of having it as part of frontline treatment. Usually getting multiple opinions helps to firm up what treatment plan to adopt, but that doesn't seem to be the case for your mother. That's when turning to the NCCN Guidelines that CMB provided a link to should really help to act as sort of a tie-breaker for you.

    Good luck!

     

    thank you!

    the radiation oncologist was actually the one who suggested that he would personally do chemo + vaginal brachytherapy if he were in this situation, so it certainly struck us as odd that he felt chemo + some form of radiation would be a better solution to the problem than just radiotherapy.

    thank you for sharing your thoughts on this situation! i very much appreciate it and am glad to hear you're a five year survivor! i hope you continue to do well and have a wonderful day :)

  • cmb
    cmb Member Posts: 751 **
    edited August 31 #5
    Difficult Decision

    Thanks for the additional information. You're right, a positive pelvic washing does not change the stage. But I still wonder why the tumor cells in the lymph node didn't bump your mother up to Stage III. We've had other members here with single lymph node involvement staged as IIIC.

    The doctors could certainly radiate the pelvic area, with a special focus on the area where the one positive lymph node was found. And if your mother had the most common, Grade 1, form of endometrial cancer, that might be reasonable.

    But the positive pelvic washing does mean that cancer cells are circulating in the body and your mother has a Grade 3 form of cancer. I'd personally feel more comfortable having a systemic treatment like chemotherapy along with radiation.

    However, as MABound noted, doctors make recommendations based on the patient's overall health situation. If your mother has other significant pre-existing conditions, the surgeon may feel that chemotherapy would be too hard on her.

    I know that you've already gotten a lot of different opinions, but perhaps one more from a different cancer center might help break the impasse. And ultimately, of course, the decision on what treatment to do will rest with your mother. 

  • Forherself
    Forherself Member Posts: 609 **
    edited August 31 #6
    Risk factors

    How many lymph nodes were taken?  Lower uterine involvement increases risk of recurrence.  Age also increases risk of recurrence.  The older the patient, the more likely a recurrence too.  Cancer centers usually have a cancer board that can give multiple treatment plans, and then come up with the preferred one.   That is what I would want.  Someone to take all into consideration and make the recommendation.  

  • MoeKay
    MoeKay Member Posts: 354 **
    edited August 31 #7
    I would find 4 different opinions very unhelpful

    Hi peachtea, you're a real peach for providing your Mom with much needed help.  If I understand correctly, your Mom has gotten four different adjuvant treatment opinions from various oncologists.  I would find this not only unhelpful, but confusing and stressful.  I know after I had my surgery, my gyn-onc said I needed both internal and external radiation due to a variety of factors raising the risk of recurrence.  When I went for a consult with the radiation oncologist, in another city closer to home, she only discussed external radiation with me.  When the two professionals were not on the same wavelength, my gyn-onc called the rad-onc to discuss the differing positions.  In the end, my gyn-onc and rad-onc came to an agreement that I needed both types of radiation. 

    If I were in your Mom's position, I would see if I could get some or all of these doctors to have a conference call.  I would explain to these professionals that having four different potential treatment paths does not give your Mom the confidence or comfort level she needs to make a well-informed, medically sound decision.

    Also, if I were your Mom, I would get another second opinion on both pathology and treatment from one of the major cancer centers like M.D. Anderson, Memorial Sloan Kettering, or the Mayo Clinic.  If there is that much divergence on treatment, her case cannot be considered run-of-the-mill and I would want some help in decision-making from one of the "big guns."  It seems to me that although you have four opinions at this point, because all the opinions appear to differ, you really only have four first opinions.

    Good luck to your Mom and you as she moves forward with her treatment!

  • peachtea
    peachtea Member Posts: 11
    cmb said:

    Welcome peachtea

    I'm sorry to hear that your mother has gotten such contradictory information from the various doctors. That always makes it so hard to know what to do next. But given what you've described, I'm going to ask if your mother is being treated outside of the United States.

    The reason I ask is that in the United States (and other countries that use the FIGO staging system) your mother would be Stage III, not Stage 1a, since there were tumor cells found outside the uterus. The most common treatment here would be six cycles of Paclitaxel/Carboplatin, often followed by internal and/or external radiation. This is especially true since your mother has an aggressive, Grade 3 form of endometrial cancer.

    It concerns me that only some doctors have recommended chemotherapy, and only for three cycles. But we've learned on this board that different countries have different treatment protocols.

    If you haven't found the link already in the FAQ at the top of the discussion topics, see the link for the NCCN Guidelines for Uterine Cancer here:

    https://www.nccn.org/patients/guidelines/content/PDF/uterine-patient.pdf

    It was just updated in 2021, so it contains some newer information than the previous version published in 2019. This publication describes the staging and treatment used here in the United States.

    Please come back and ask any more questions that you or your mother has. I'm sure that your mother appreciates all your help during this difficult time. 

    thank you

    thank you so much for the in-depth and thoughtful explanation, and your kindness! it's been very confusing as we've been reassured by the doctors (we even got a second opinion on the pathology samples from Stanford) that my mother's surgical staging is FIGO stage 1a, and that both positive pelvic washings and isolated tumor cells aren't considered during staging anymore (apparently they removed pelvic washings from FIGO staging criteria in 2009?) that being said because there are malignant cells outside the uterus i am very concerned. i'll try to seek another second opinion elsewhere but most doctors seem to advise light(er) adjuvant therapy with her main surgeon being very opposed to chemotherapy as she said the toxicity of the treatment was something that my mother could avoid at her stage. 

    *oops, forgot to add but yes we are located in the US!

  • peachtea
    peachtea Member Posts: 11

    Risk factors

    How many lymph nodes were taken?  Lower uterine involvement increases risk of recurrence.  Age also increases risk of recurrence.  The older the patient, the more likely a recurrence too.  Cancer centers usually have a cancer board that can give multiple treatment plans, and then come up with the preferred one.   That is what I would want.  Someone to take all into consideration and make the recommendation.  

    she had 18 nodes taken! (i posted the pathology report above). she is fairly young, in her early 50s.

  • MAbound
    MAbound Member Posts: 1,156 **
    Two things that concern me

    It sounds like her surgery was very thorough, but two things that concern me are that positive pelvic wash and that she has a grade three cancer.

    The positive wash is concerning as a red light that perhaps some contamination occured during the course of her surgery that allowed for the spread of cancer cells into the pelvis, especially in light of all of the other negative-for-cancer findings. Contamination during the handling of specimens is another possibility, but I don't know if there is anyway to conclusively prove if that is the case vs. it ocuriring during the surgery. The scenario is one factor that weighs towards having chemo to go after microscopic cells although perhaps there is the belief that pelvic radiation will be enough to sterilize anything there. Radiation before chemo carries the risk of damaging blood vessels where it occurs and if there were a need for chemo later for a recurrence, it could impede its effectiveness there.

    Grade three cancers are more likely to recur than grade one or two, so there is an argument for treatment to be equally as agressive as this pathology finding is. My personal experience with cancer colors my viewpoint towards throwing the kitchen sink at it during frontline treatment, and if any think that is too aggressive for this particular pathology, then I'd go with chemo first and save radiation for "just in case" a recurrence happens. I think that is possible in your mothers case because of her less than 50% myometrial penetration and negative LVSI, although the LUS was involved making it a tougher call. The bottom line is that I'm not an oncologist, but that's where my mind is headed as I read all of this. It's always so agonizing to have to make such a huge decision when the best thing to do is not exactly certain! 

  • peachtea
    peachtea Member Posts: 11
    MAbound said:

    Two things that concern me

    It sounds like her surgery was very thorough, but two things that concern me are that positive pelvic wash and that she has a grade three cancer.

    The positive wash is concerning as a red light that perhaps some contamination occured during the course of her surgery that allowed for the spread of cancer cells into the pelvis, especially in light of all of the other negative-for-cancer findings. Contamination during the handling of specimens is another possibility, but I don't know if there is anyway to conclusively prove if that is the case vs. it ocuriring during the surgery. The scenario is one factor that weighs towards having chemo to go after microscopic cells although perhaps there is the belief that pelvic radiation will be enough to sterilize anything there. Radiation before chemo carries the risk of damaging blood vessels where it occurs and if there were a need for chemo later for a recurrence, it could impede its effectiveness there.

    Grade three cancers are more likely to recur than grade one or two, so there is an argument for treatment to be equally as agressive as this pathology finding is. My personal experience with cancer colors my viewpoint towards throwing the kitchen sink at it during frontline treatment, and if any think that is too aggressive for this particular pathology, then I'd go with chemo first and save radiation for "just in case" a recurrence happens. I think that is possible in your mothers case because of her less than 50% myometrial penetration and negative LVSI, although the LUS was involved making it a tougher call. The bottom line is that I'm not an oncologist, but that's where my mind is headed as I read all of this. It's always so agonizing to have to make such a huge decision when the best thing to do is not exactly certain! 

    we are leaning towards more aggressive therapy

    thanks for the comment MAbound! it is very helpful to hear your perspective and thoughts about this. we were also concerned about the contamination happening during surgery but another surgeon who reviewed the surgeon's report said the way she handled the surgery made this extremely unlikely (apparently most surgeons use something called a "uterine manipulator" that can sometimes cause cancer cells to leak into the pelvic fluid, but my mom's surgeon didn't). so the positive pelvic wash is a mystery.

    thanks for pointing out that radiation before chemo carries the risk of damaging blood vessels as well! we had no idea about this and we'll ask her chemo doctor about it. we are leaning for more aggressive treatment vs. less - currently thinking about doing 3 or 4 cycles of chemo + EBRT (IMRT) radiation. my hope is that chemo will cover the positive pelvic wash and the radiation will cover any possibility of recurrence in regional lymph nodes (which positive pelvic wash, isolated tumor cells, and lower uterine segment involvement all seem associated with). but i'm not 100% sure still. i am also worried that chemo + radiotherapy is significantly worse toxicity than chemo + brachytherapy or chemo alone, and because my mom had so many lymph nodes removed she may be at greater risk for lymphedema after chemoradiotherapy. it is definitely strange to me that all of her doctors felt EBRT + chemo was the maximal treatment and too aggressive for my mom's situation. i have since read a study online from 2017 that recommended positive washings be included in staging again:

    "In conclusion, our study shows that positive peritoneal cytology is an independent prognostic factor in patients with early stage endometrioid adenocarcinoma. Although peritoneal cytology has not been used since FIGO staging criteria 2009, it is still requested by the FIGO to be reported separately. We propound that peritoneal cytology adds back into the surgical staging for endometrial cancer in future FIGO staging criteria revision. Until then, peritoneal washings should stay still as an important part for accurate risk-stratification of patients with early stage endometrial cancer."

  • peachtea
    peachtea Member Posts: 11
    MoeKay said:

    I would find 4 different opinions very unhelpful

    Hi peachtea, you're a real peach for providing your Mom with much needed help.  If I understand correctly, your Mom has gotten four different adjuvant treatment opinions from various oncologists.  I would find this not only unhelpful, but confusing and stressful.  I know after I had my surgery, my gyn-onc said I needed both internal and external radiation due to a variety of factors raising the risk of recurrence.  When I went for a consult with the radiation oncologist, in another city closer to home, she only discussed external radiation with me.  When the two professionals were not on the same wavelength, my gyn-onc called the rad-onc to discuss the differing positions.  In the end, my gyn-onc and rad-onc came to an agreement that I needed both types of radiation. 

    If I were in your Mom's position, I would see if I could get some or all of these doctors to have a conference call.  I would explain to these professionals that having four different potential treatment paths does not give your Mom the confidence or comfort level she needs to make a well-informed, medically sound decision.

    Also, if I were your Mom, I would get another second opinion on both pathology and treatment from one of the major cancer centers like M.D. Anderson, Memorial Sloan Kettering, or the Mayo Clinic.  If there is that much divergence on treatment, her case cannot be considered run-of-the-mill and I would want some help in decision-making from one of the "big guns."  It seems to me that although you have four opinions at this point, because all the opinions appear to differ, you really only have four first opinions.

    Good luck to your Mom and you as she moves forward with her treatment!

    thank you moekay

    thanks for sharing your story moekay! it's very helpful to hear your journey and i hope you've been doing well. and thanks for your recommendation and the stories of other people on this forum, i've decided to get another second opinion at memorial sloan kettering since they seem to offer online/zoom calls. for our 4 opinions, two of the doctors agreed on radiotherapy only, one said they would to chemo + VBT, and the other said it was a very difficult decision and they'd also opt for chemo and some form of radiation but couldn't decide between the two types of radiation and said both were probably fine. 

  • peachtea
    peachtea Member Posts: 11
    edited September 1 #13
    cmb said:

    Difficult Decision

    Thanks for the additional information. You're right, a positive pelvic washing does not change the stage. But I still wonder why the tumor cells in the lymph node didn't bump your mother up to Stage III. We've had other members here with single lymph node involvement staged as IIIC.

    The doctors could certainly radiate the pelvic area, with a special focus on the area where the one positive lymph node was found. And if your mother had the most common, Grade 1, form of endometrial cancer, that might be reasonable.

    But the positive pelvic washing does mean that cancer cells are circulating in the body and your mother has a Grade 3 form of cancer. I'd personally feel more comfortable having a systemic treatment like chemotherapy along with radiation.

    However, as MABound noted, doctors make recommendations based on the patient's overall health situation. If your mother has other significant pre-existing conditions, the surgeon may feel that chemotherapy would be too hard on her.

    I know that you've already gotten a lot of different opinions, but perhaps one more from a different cancer center might help break the impasse. And ultimately, of course, the decision on what treatment to do will rest with your mother. 

    Isolated Tumor Cells Has Unclear Effect on Prognosis?

    i'm not sure about the isolated tumor cells in the lymph node either. :-/ according to the doctor there aren't really any studies that show isolated tumor cells have a clear effect on prognosis of the patient although most of the studies seem to be on lower grade cancer, so "technically" my mom's lymph nodes were not grossly positive for cancer. my mom had 18 lymph nodes removed, all of which tested negative for cancer (only her sentinel nodes were ultrastaged). here's her pathology report if it helps: [redacted]

    my mom's case is also bizarre because she presented with so much inflammation that the surgeon thought it was all cancer and removed a ton of stuff during surgery (her lymph nodes apparently fractured easily which is why so many were removed). she was admitted to the hospital 5 days after surgery with severe sepsis, but thankfully has recovered since then and is doing well. the radiologist we saw actually thinks the inflammation might be her body fighting against the cancer (parts of her vaginal and cervical mucosa were completely denuded) and maybe she had stage 2 cancer but actually fought back against it? i don't know how probable that is though. if it also helps, some additional information: my mom is in her early 50's, has hypothyroidism (well managed) and hypertension, but no other major underlying issues, and is overweight. so i don't think she would necessarily have any major problems going through a course of chemo. she has also been bleeding abnormally for more than 2 years so we were shocked that her staging was so low despite having abnormal bleeding for so long. i wish i could go back in time 2 years ago and convince her to get checked by a gynecologist then, but we didn't know then that heavy bleeding during menopause was cause for concern ):

  • peachtea
    peachtea Member Posts: 11
    edited September 1 #14
    an update

    thanks to everyone who chimed in here. for now we've decided to go with maximal therapy, 3 rounds of carbo/taxol + pelvic radiation (VMAT).

  • MAbound
    MAbound Member Posts: 1,156 **
    peachtea said:

    an update

    thanks to everyone who chimed in here. for now we've decided to go with maximal therapy, 3 rounds of carbo/taxol + pelvic radiation (VMAT).

    Lots of advice here about how to do that, but just wanted to make sure that it is on your radar before your mom starts any chemo. We'll be here if you need anything as her treatment progresses. Best wishes.

  • peachtea
    peachtea Member Posts: 11
    MAbound said:

    Lots of advice here about how to do that, but just wanted to make sure that it is on your radar before your mom starts any chemo. We'll be here if you need anything as her treatment progresses. Best wishes.

    <3</b>
    thank you so much! best wishes to you as well :)
  • MoeKay
    MoeKay Member Posts: 354 **
    edited September 3 #17
    Best of luck to your Mom

    I want to wish your Mom all the best as she begins her chemo and radiation.  I know when I was treated back in 1999, I asked about chemo, because I was very concerned that my particular risk factors put me at an elevated risk for recurrence, especially hematogenous spread.  At that time, however, chemo was not standard of care for my stage and grade (surgical stage 1C, grade 2, now stage 1B due to subsequent changes to the staging system).  But the deep myometrial invasion, extensive LVSI, lower uterine segment involvement, and a fairly large tumor caused me many sleepless nights without the extra reassurance that chemo might have provided. 

    Please keep us posted on how things are going for your Mom. 

     

  • peachtea
    peachtea Member Posts: 11
    MoeKay said:

    Best of luck to your Mom

    I want to wish your Mom all the best as she begins her chemo and radiation.  I know when I was treated back in 1999, I asked about chemo, because I was very concerned that my particular risk factors put me at an elevated risk for recurrence, especially hematogenous spread.  At that time, however, chemo was not standard of care for my stage and grade (surgical stage 1C, grade 2, now stage 1B due to subsequent changes to the staging system).  But the deep myometrial invasion, extensive LVSI, lower uterine segment involvement, and a fairly large tumor caused me many sleepless nights without the extra reassurance that chemo might have provided. 

    Please keep us posted on how things are going for your Mom. 

     

    <3</b>
    i'm sorry you had to go through so many sleepless nights back then, although i'm very glad things turned out okay for you. thank you for all of your thoughtful explanations and messages these past couple of days. they've really helped us not feel so alone in this. i'll definitely post updates once my mom is through with her treatment! take care moekay <3
  • Maxster
    Maxster Member Posts: 93 **
    peachtea said:

    thank you moekay

    thanks for sharing your story moekay! it's very helpful to hear your journey and i hope you've been doing well. and thanks for your recommendation and the stories of other people on this forum, i've decided to get another second opinion at memorial sloan kettering since they seem to offer online/zoom calls. for our 4 opinions, two of the doctors agreed on radiotherapy only, one said they would to chemo + VBT, and the other said it was a very difficult decision and they'd also opt for chemo and some form of radiation but couldn't decide between the two types of radiation and said both were probably fine. 

    Positive experience with MSK

    I had a second opinion at MSK and found the experience to be absolutely beneficial.  They recommended a different course of treatment than my gyn/onc.  However, I was able to get that locally as there was no push back from my local provider.  I also was able to be a part of the IMPACT study which is the oldest genomic testing site in the nation.  They also tissue type which is important should treatment with a clinical trial be needed for a recurrence.  I would share all the different opinions you have received.  They have so much collective experience with so many different cancer situations that they may actually have experience treating women with the same/similar variances that your mother has.  I had uterine serous cancer, stage 3.  This is a rare cancer but they were very familiar with it simply because they see so many cancer patients.  I wish you the best of luck and comfort for all of you to find a treatment plan you trust.