Treatment options for newly dx of endometrial adenocarcinoma

kathybd
kathybd Member Posts: 126
edited March 2014 in Uterine/Endometrial Cancer #1
Hello I just received new info on my treatment options from a Dr friend of a friend re: chemothetapy vs external radiation vs brady therapy. The NCCN guidelines of '09 do not reccomend chemo for my particular case. (If anyone wants this for their personal use, I can forward it by email; or possibly download it to this site with help from my son! I see my GYN/ONC/surgeon on Mon for postop and am wondering if anyone has encountered my dilemma. Wanting to do all I can tp prevent reoccurrence, but not so much that I experience side effects that will prevent me from working if not needed.
All of you wonderful women are so knowledgeable, that I thought I would see if anyone has any thoughts on my dilemma. Just to remind you; I am Stage 1, Grade 2-3 endometrial adenocarcinoma with superficial myometrial invasion and lymphatic space involvement.
Thanks for all you ladies do! Kathy
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Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #2
    Personally, I'd do some chemo with any Grade 3 cancer.
    If your Gyn-Onc's recommendatation concurs with your friend-of-a-friend-doctor, then you do have a togh decision ahead. But if your Gyn-Onc suggests chemo, with some Grade 3 cells showing up in your pathology report, I would personally want to do some chemo, just to be sure ALL of those aggressive sneaky Grade 3 cells were killed. But that's me.
  • bonniesue
    bonniesue Member Posts: 124 Member
    #3
    dilemma and understanding
    My mother was Grade 1, stage 1C or 2B, over one half of the myometrium --differing reports or very borderline. She had a davinci hyst. she had differing opinions which ranged from just brachy to brachy plus external beam to just external beam. She got three opinions and it was HER decision which is hard (frustrating)to put on someone that is not in the medical field. She also had another opinion with the pathology report to make sure there was some agreement. that also came out a little different. When it is all said and done she took both but it was a tough decision. No chemo was suggested.
  • deanna14
    deanna14 Member Posts: 732
    #4
    Grade 2-3 cells
    I would be as aggressive as the doctors would prescribe. You have caught this thing early, but have some aggressive cells. I would do the chemo as an insurance policy... just me.
  • kathybd
    kathybd Member Posts: 126
    #5
    deanna14 said:

    Grade 2-3 cells
    I would be as aggressive as the doctors would prescribe. You have caught this thing early, but have some aggressive cells. I would do the chemo as an insurance policy... just me.

    2nd opinion
    Thanks for the input Deanna and BonnieSue. Just got back from my 2nd opinion and it looks like my diagnosis is actually Stage 3A due to the positive pelvic washings. There is a chance it was contaminated during the D&C prior to my surgery, but either way this Doc is also reccomending chemo. I am having the Stanford pathologists reread my slides and we will go from there. Lots of twists and turns with this disease! Hope all is well with everyone.
  • kkstef
    kkstef Member Posts: 688 Member
    #6
    kathybd said:

    2nd opinion
    Thanks for the input Deanna and BonnieSue. Just got back from my 2nd opinion and it looks like my diagnosis is actually Stage 3A due to the positive pelvic washings. There is a chance it was contaminated during the D&C prior to my surgery, but either way this Doc is also reccomending chemo. I am having the Stanford pathologists reread my slides and we will go from there. Lots of twists and turns with this disease! Hope all is well with everyone.

    Kathy, Am glad you have sought a second opinion. I was diagnosed in June 2008 with Adenocarcinoma, Stage 111A, Stage 2/3 of the uterus. I had 30 external beam radiation treatments, with 4 of those targeted at the vaginal apex. I then had chemo (carbo and taxol)...I was to have 7 but was only able to tolerate 5. So far I am happy to say I have NED. It sounds like you are getting more details every day and that will help you make decisions about your treatment plan.

    Keep us posted!!

    Wishing you the very best!! Karen
  • kathybd
    kathybd Member Posts: 126
    #7
    kkstef said:

    Kathy, Am glad you have sought a second opinion. I was diagnosed in June 2008 with Adenocarcinoma, Stage 111A, Stage 2/3 of the uterus. I had 30 external beam radiation treatments, with 4 of those targeted at the vaginal apex. I then had chemo (carbo and taxol)...I was to have 7 but was only able to tolerate 5. So far I am happy to say I have NED. It sounds like you are getting more details every day and that will help you make decisions about your treatment plan.

    Keep us posted!!

    Wishing you the very best!! Karen

    update
    Thanks so much, Karen. You are so right about new info all the time. I also have followup with my surgeon, who is an oncologist also on Mon. Not sure which one I will stick with. Wishing you continued NED with a long and happy life ahead of you.
    Best,Kathy
  • bonniesue
    bonniesue Member Posts: 124 Member
    #8
    kathybd said:

    2nd opinion
    Thanks for the input Deanna and BonnieSue. Just got back from my 2nd opinion and it looks like my diagnosis is actually Stage 3A due to the positive pelvic washings. There is a chance it was contaminated during the D&C prior to my surgery, but either way this Doc is also reccomending chemo. I am having the Stanford pathologists reread my slides and we will go from there. Lots of twists and turns with this disease! Hope all is well with everyone.

    kathybd
    Good, I am glad you are getting a second look and personally I think it helps you to have more info and make an informed decision. Blessings.
  • deanna14
    deanna14 Member Posts: 732
    #9
    bonniesue said:

    kathybd
    Good, I am glad you are getting a second look and personally I think it helps you to have more info and make an informed decision. Blessings.

    Glad you got that 2nd opinion!
    It could make all the difference in the long run. Chemo is not so terribly bad and it is worth it if it increases your odds of remaining NED. Take care. I know everything is going to turn out well for you.
  • maryln3
    maryln3 Member Posts: 62
    #10
    lymphnodes
    i have exactly what u have except...my doc never did biosy on lymph nodes abd they are still in me

    i have decision..i want them out...are yours out?
  • kathybd
    kathybd Member Posts: 126
    #11
    lindaprocopio said:

    Personally, I'd do some chemo with any Grade 3 cancer.
    If your Gyn-Onc's recommendatation concurs with your friend-of-a-friend-doctor, then you do have a togh decision ahead. But if your Gyn-Onc suggests chemo, with some Grade 3 cells showing up in your pathology report, I would personally want to do some chemo, just to be sure ALL of those aggressive sneaky Grade 3 cells were killed. But that's me.

    Thanks, Linda. You are one
    Thanks, Linda. You are one of the most knowledgeable people on this board. How do you do it?
  • kathybd
    kathybd Member Posts: 126
    #12
    maryln3 said:

    lymphnodes
    i have exactly what u have except...my doc never did biosy on lymph nodes abd they are still in me

    i have decision..i want them out...are yours out?

    lymph nodes
    Hello I had 25 lymph nodes removed from the groin, pelvic area, abdomen and other areas. All were negative. The last Doc I spoke with said I am Stage 3B with Grade 2-3 cells. I am having a second opinion with Stanford pathology and my case is going to be presented at a Tumor Board in Utah where a relative works. My postop appointment is Wed. Will hopefully know more after as I have tons of questions. Right now they are recommending taxol/carboplatin and 1 Doc also says the hormone Megace 4times a day for a year. Am anxious to get these opinions and make some decisions. Have to go back to work on the 10th and my boss who is a Doc is getting worse evrey day. He doesn't think I am going to be able to work with chemo. So frustrating not getting any support from him; but not surprising. Don't know what to tell you about nodes in abdomen...did he biopsy any of them? Good luck with your decision.
  • kathybd
    kathybd Member Posts: 126
    #13
    deanna14 said:

    Glad you got that 2nd opinion!
    It could make all the difference in the long run. Chemo is not so terribly bad and it is worth it if it increases your odds of remaining NED. Take care. I know everything is going to turn out well for you.

    Thank you, Deanna!
    I am also getting a 3rd opinion. Hope that one will be the best!! Take care...hope you are enjoying Florida!
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #14
    kathybd said:

    lymph nodes
    Hello I had 25 lymph nodes removed from the groin, pelvic area, abdomen and other areas. All were negative. The last Doc I spoke with said I am Stage 3B with Grade 2-3 cells. I am having a second opinion with Stanford pathology and my case is going to be presented at a Tumor Board in Utah where a relative works. My postop appointment is Wed. Will hopefully know more after as I have tons of questions. Right now they are recommending taxol/carboplatin and 1 Doc also says the hormone Megace 4times a day for a year. Am anxious to get these opinions and make some decisions. Have to go back to work on the 10th and my boss who is a Doc is getting worse evrey day. He doesn't think I am going to be able to work with chemo. So frustrating not getting any support from him; but not surprising. Don't know what to tell you about nodes in abdomen...did he biopsy any of them? Good luck with your decision.

    question Kathy
    I'm curious why you say you don't think you can work during chemo. What makes you think this?

    I had some chemo and worked through it. Took 2 days off the weeks I had chemo - chemo Thursday and took Friday. Next week I was able to work. Check and see if you can take one day off each week - FMLA.

    Good luck. Mary Ann
  • kathybd
    kathybd Member Posts: 126
    #15
    daisy366 said:

    question Kathy
    I'm curious why you say you don't think you can work during chemo. What makes you think this?

    I had some chemo and worked through it. Took 2 days off the weeks I had chemo - chemo Thursday and took Friday. Next week I was able to work. Check and see if you can take one day off each week - FMLA.

    Good luck. Mary Ann

    2 words-my boss, a doctor
    I think I can work and my Dr says I can work, but my boss was pushing me to take disability! He is worried I am going to make "mistakes." I had my postop visit and am most likely going to do the chemo. once every 3rd week. Figure Fridays may be the best day to get it, but you got it on Thurs? This guy was unbelievable on the phone with me today. He actually told me he had emails lined up for people to interview "while I was off." Been with him for a year and wish I had never taken the job. Love the patients, though.
    Thank you for your wishes...even if I am Irish, I am going to need all the luck I can get when I go back on the 10th. Kathy
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #16
    kathybd said:

    2 words-my boss, a doctor
    I think I can work and my Dr says I can work, but my boss was pushing me to take disability! He is worried I am going to make "mistakes." I had my postop visit and am most likely going to do the chemo. once every 3rd week. Figure Fridays may be the best day to get it, but you got it on Thurs? This guy was unbelievable on the phone with me today. He actually told me he had emails lined up for people to interview "while I was off." Been with him for a year and wish I had never taken the job. Love the patients, though.
    Thank you for your wishes...even if I am Irish, I am going to need all the luck I can get when I go back on the 10th. Kathy

    Sorry that you don't have more support...
    at work, Kathy. Working actually helped me alot - so I wasn't home and feeling sorry for myself. I sure could go down that road easy enough.

    I chose Thursdays because I thought I would be more alert and feeling better on the following Monday. I did have one chemo on a Friday and I was fine on Monday. The day after chemo most people including me have commented that they feel good - even energetic. It's the next 2-3 days that were most fatiguing for me.

    I hope things work out for you. Best wishes. Mary Ann
  • tbsjewels
    tbsjewels Member Posts: 7
    #17
    kathybd said:

    2 words-my boss, a doctor
    I think I can work and my Dr says I can work, but my boss was pushing me to take disability! He is worried I am going to make "mistakes." I had my postop visit and am most likely going to do the chemo. once every 3rd week. Figure Fridays may be the best day to get it, but you got it on Thurs? This guy was unbelievable on the phone with me today. He actually told me he had emails lined up for people to interview "while I was off." Been with him for a year and wish I had never taken the job. Love the patients, though.
    Thank you for your wishes...even if I am Irish, I am going to need all the luck I can get when I go back on the 10th. Kathy

    Working during Chemo
    Hi Kathy, Sorry to hear about your work situation. It just makes the whole scene so much harder. From my experience with chemo I wouldn't recommend getting it on Friday. I had my treatments on Thursday. Friday I was on a steroid high and could go like crazy. Sat. was fine but by evening I would start to feel fluish. Sunday and Monday were the worst and Tues. would be a little better. I never started to feel really better until Wed. Everyone's different, you just don't know how you'll react until it happens. On Sat. I would prepare meals for myself, husband and 18 yr.old son for the next 3 days, take a shower and put on my jammies. The next 3 days were spent in bed or the recliner. I didn't drive a car or even take a shower until Tues. morning and then with my husband in the room in case I got too dizzy. I think I had a pretty severe reaction to the chemo drugs having heard from others on this sight. Sorry, it doesn't sound like much fun I know but I'm not sorry I did it and would go through it again if I have to. I work but I'm self employed and just worked when I felt I could do it. Hope you're able to work it out. Hang in there!

    Terry
  • kathybd
    kathybd Member Posts: 126
    #18
    daisy366 said:

    Sorry that you don't have more support...
    at work, Kathy. Working actually helped me alot - so I wasn't home and feeling sorry for myself. I sure could go down that road easy enough.

    I chose Thursdays because I thought I would be more alert and feeling better on the following Monday. I did have one chemo on a Friday and I was fine on Monday. The day after chemo most people including me have commented that they feel good - even energetic. It's the next 2-3 days that were most fatiguing for me.

    I hope things work out for you. Best wishes. Mary Ann

    Mary Ann I always appreciate
    Mary Ann I always appreciate your input. It comes across so calming and straightforward. I will be getting the chemo every 3 weeks, so maybe I should try for Thurs. and hope for the best. And the women I work with are the best, so I will have tons of support there. Again, I hope I look as cute as you once my hair starts growing back! Kathy
  • kathybd
    kathybd Member Posts: 126
    #19
    tbsjewels said:

    Working during Chemo
    Hi Kathy, Sorry to hear about your work situation. It just makes the whole scene so much harder. From my experience with chemo I wouldn't recommend getting it on Friday. I had my treatments on Thursday. Friday I was on a steroid high and could go like crazy. Sat. was fine but by evening I would start to feel fluish. Sunday and Monday were the worst and Tues. would be a little better. I never started to feel really better until Wed. Everyone's different, you just don't know how you'll react until it happens. On Sat. I would prepare meals for myself, husband and 18 yr.old son for the next 3 days, take a shower and put on my jammies. The next 3 days were spent in bed or the recliner. I didn't drive a car or even take a shower until Tues. morning and then with my husband in the room in case I got too dizzy. I think I had a pretty severe reaction to the chemo drugs having heard from others on this sight. Sorry, it doesn't sound like much fun I know but I'm not sorry I did it and would go through it again if I have to. I work but I'm self employed and just worked when I felt I could do it. Hope you're able to work it out. Hang in there!

    Terry

    Terry Am happy to hear
    Terry Am happy to hear everyone's story about chemo. I may just shoot for Thurs to have it and then just hope for the best. Getting it every 3 weeks, so get a break. Thanks for your reply. The support you get on this site is phenomenal. So glad I found all of you wonderful ladies! Kathy
  • npl8261
    npl8261 Member Posts: 33
    #20
    kathybd said:

    Terry Am happy to hear
    Terry Am happy to hear everyone's story about chemo. I may just shoot for Thurs to have it and then just hope for the best. Getting it every 3 weeks, so get a break. Thanks for your reply. The support you get on this site is phenomenal. So glad I found all of you wonderful ladies! Kathy

    working during chemo
    For me, chemo was pretty rough, and I couldn't imagine working during chemo in my condition. During my first chemo treatment I made the comment to the nurse and social worker (she visited everyone during chemo) that I expected to feel like I did when I was pregnant, which was pretty lousy. Then during the first week of treatment I felt LOUSY and called the nurse, who changed my medicine to EMEND. She said that they sort of expected me to get extra sick because of how I described my pregnancy sickness and I have since learned that women have worse reactions to chemo then men. Since starting chemo I have become very forgetfull and find it difficult to focus. There are many times I am in one room and need to get something in another and once in the room I completely forget what I went into the room for. I clearly had "Chemo Brain" and it made become somewhat of a Scatterbrain at times, which is why I say for me working would be difficult.

    I think it would be unfair for me to have someone pay me and get far less than 100%. I realize that everyone is different and everyone reacts different to chemo but for me it was 8 days of feeling very lousy and having to have family members take my kids during the day.

    In the beginning, I would start to feel sick within 24 hours of the chemo treatment but by the third treatment I felt sick by the end of the day. Even just getting the Benedryl made me feel lousy. I would go in on Monday's and didn't feel better until the following Monday. The worst days for me were Wednesday, Thursday, and Friday. I chose Monday because I knew the rest of the week my kids were in pre-school and I figured I would just feel lousy at home when they were gone. Perhaps my system just couldn't tolerate it as well. During my first pregnancy I was sick until about week 18 but chemo was a lot worse than that feeling.

    I don't want to discourage anyone with my comments but to just share my experience.
  • bonniesue
    bonniesue Member Posts: 124 Member
    #21
    kathybd said:

    2 words-my boss, a doctor
    I think I can work and my Dr says I can work, but my boss was pushing me to take disability! He is worried I am going to make "mistakes." I had my postop visit and am most likely going to do the chemo. once every 3rd week. Figure Fridays may be the best day to get it, but you got it on Thurs? This guy was unbelievable on the phone with me today. He actually told me he had emails lined up for people to interview "while I was off." Been with him for a year and wish I had never taken the job. Love the patients, though.
    Thank you for your wishes...even if I am Irish, I am going to need all the luck I can get when I go back on the 10th. Kathy

    kathy-bd
    Sorry your boss( a physician is a louse). He could work with you on this one. You need support and some kindness. Does he have a wife and how would he appreciate someone treating her like this?? Ask him how he would treat you if you were pregnant?? If you get short term disability maybe that is an option but if you need health benefits this is why some people need to work. Take Care and be selfish(THIS IS ABOUT YOU) get well and blessings.

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