New Appointment

debrajo
debrajo Member Posts: 1,095 Member
in Uterine/Endometrial Cancer #1
I have a first appointment with an intergrative(sp) doctor at MD Anderson May 21. Any questions I should ask, if so what, or should I just listen to what he has to say for the first visit? This kind of doctor is new to me and I am VERY out of my element. I had to ask for this type of appointment since no one has ever said anything to me abbout foods, diets, ect. My doctor's attitude when I asked was "Sure, why not, it won't hurt you". Any thoughts ladies? Debrajo

Comments

  • carolenk
    carolenk Member Posts: 907 Member
    #2
    I hope your integrative
    I hope your integrative doctor appointment meets your expectations. I think you are still in treatment, right? Maybe the doctor could advise you on what you can do to reduce the side effects of treatment without interfering with treatment. Also maybe find out if he/she knows anything about chemo brain--not much research is being done on that phenomenon although it is finally being acknowledged as being real.
  • debrajo
    debrajo Member Posts: 1,095 Member
    #3
    carolenk said:

    I hope your integrative
    I hope your integrative doctor appointment meets your expectations. I think you are still in treatment, right? Maybe the doctor could advise you on what you can do to reduce the side effects of treatment without interfering with treatment. Also maybe find out if he/she knows anything about chemo brain--not much research is being done on that phenomenon although it is finally being acknowledged as being real.

    Good question Carolenk! Had
    Good question Carolenk! Had not thought of that one and it is one I am having a lot of trouble with! I am not in treatment now and if by May am clear it will be my second anniversary with NED. I have had no recurrence's either so I am so thankful for that. My UPSC was 1a no grade for some reason, but my medical reports are on line to me and over the last 6 months or so I have figured out that they didn't grade due to the open heart surgery I had 8 weeks earlier. Also in the reports I had found that I have poorly differential lesions which was explained as the more aggressive kind of UPSC. Let me know if you think of anything else. Thanks a bunch, debrajo
  • jazzy1
    jazzy1 Member Posts: 1,379
    #4
    debrajo said:

    Good question Carolenk! Had
    Good question Carolenk! Had not thought of that one and it is one I am having a lot of trouble with! I am not in treatment now and if by May am clear it will be my second anniversary with NED. I have had no recurrence's either so I am so thankful for that. My UPSC was 1a no grade for some reason, but my medical reports are on line to me and over the last 6 months or so I have figured out that they didn't grade due to the open heart surgery I had 8 weeks earlier. Also in the reports I had found that I have poorly differential lesions which was explained as the more aggressive kind of UPSC. Let me know if you think of anything else. Thanks a bunch, debrajo

    Dr appt
    I don't have this type of doc, unfortunately my insurance doesn't cover these specialists...boohoo!

    If it were me, I'd have my list of things that you have concerns about, for instance--- organic foods, supplements, exercise, yoga, etc. These docs really treat the WHOLE BODY...wonderful concept.

    Then I'd go into it with an open mind as he'll ask you lots of questions to better understand you personally and your current health situation and where you want to go from here. From here you both can built a great plan to treat YOU PERSONALLY and keep you healthy.

    Keep us posted on your appt as it sounds like a great venture!!!
    Jan
  • carolenk
    carolenk Member Posts: 907 Member
    #5
    jazzy1 said:

    Dr appt
    I don't have this type of doc, unfortunately my insurance doesn't cover these specialists...boohoo!

    If it were me, I'd have my list of things that you have concerns about, for instance--- organic foods, supplements, exercise, yoga, etc. These docs really treat the WHOLE BODY...wonderful concept.

    Then I'd go into it with an open mind as he'll ask you lots of questions to better understand you personally and your current health situation and where you want to go from here. From here you both can built a great plan to treat YOU PERSONALLY and keep you healthy.

    Keep us posted on your appt as it sounds like a great venture!!!
    Jan

    Another thought
    Debrajo

    I think you might be mixing up the terms "stage" & "grade" in your post. That is to say that because of your previous heart surgery, you didn't have the more exploratory surgery to "stage" your cancer--but if you were told you were 1a, then you WERE staged so maybe I'm the one who is mixed up. It doesn't make sense that your cancer wasn't graded because of your previous surgery.

    The pathology report on the tissue tells you the "grade" of the cancer. Yours is grade 3 (poorly differentiated cells).

    I used to think that grade 3 cancer was more aggressive & I asked an oncologist if that was true. He said "No. The grade does not determine how aggressive the cancer is. The grade only shows how differentiated the cells are--how close they look to normal cells or not."

    Maybe the TYPE of cancer that you had (being papillary serous) is more aggressive. That kind behaves more like ovarian cancer. Papillary serous ovarian cancer tends to mutate & resist chemo eventually.

    Sounds like yours was caught early & you could be on your way to being cured. Congratulations on completing chemo & staying NED!
  • debrajo
    debrajo Member Posts: 1,095 Member
    #6
    carolenk said:

    Another thought
    Debrajo

    I think you might be mixing up the terms "stage" & "grade" in your post. That is to say that because of your previous heart surgery, you didn't have the more exploratory surgery to "stage" your cancer--but if you were told you were 1a, then you WERE staged so maybe I'm the one who is mixed up. It doesn't make sense that your cancer wasn't graded because of your previous surgery.

    The pathology report on the tissue tells you the "grade" of the cancer. Yours is grade 3 (poorly differentiated cells).

    I used to think that grade 3 cancer was more aggressive & I asked an oncologist if that was true. He said "No. The grade does not determine how aggressive the cancer is. The grade only shows how differentiated the cells are--how close they look to normal cells or not."

    Maybe the TYPE of cancer that you had (being papillary serous) is more aggressive. That kind behaves more like ovarian cancer. Papillary serous ovarian cancer tends to mutate & resist chemo eventually.

    Sounds like yours was caught early & you could be on your way to being cured. Congratulations on completing chemo & staying NED!

    Hi Carolenk, I'll write just
    Hi Carolenk, I'll write just a little of what is on the report. "Patient is 57 years old presenting with Uterine Papillary Serous Cancer. Due to the sizing of of polyp it is concitered 1a. Due to multable co-morbidities no grading was done and will be treated as stage IV ovarian cancer. This cancer is poorly differential and is very agressive.

    My dau is an RN is confused by the report also. She said that since I was CLEARED for surgery, nothing else should have prevented the cancer from being staged and graded. I did ask my dr, and she was VERY non-commental about it. Just said they were treating it as COMPLETE stage IV ovarian cancer so it didn't matter! My translation: They didn't think I wouldn't clear the table due to my heart and didn;t do any grading/staging do to the type of cancer. I would like your opinion! Thanks, Debrajo
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #7
    debrajo said:

    Hi Carolenk, I'll write just
    Hi Carolenk, I'll write just a little of what is on the report. "Patient is 57 years old presenting with Uterine Papillary Serous Cancer. Due to the sizing of of polyp it is concitered 1a. Due to multable co-morbidities no grading was done and will be treated as stage IV ovarian cancer. This cancer is poorly differential and is very agressive.

    My dau is an RN is confused by the report also. She said that since I was CLEARED for surgery, nothing else should have prevented the cancer from being staged and graded. I did ask my dr, and she was VERY non-commental about it. Just said they were treating it as COMPLETE stage IV ovarian cancer so it didn't matter! My translation: They didn't think I wouldn't clear the table due to my heart and didn;t do any grading/staging do to the type of cancer. I would like your opinion! Thanks, Debrajo

    second opinion
    Debrajo, with such a confusing pathology report, I would be inclined to get a second pathologist to render an opinion with a more definitive stage and grade.

    The grade should have nothing to do with surgery unless you did not have a biopsy prior to surgery...my grade was given on the report for my endometrial biopsy.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #8
    JoAnnDK said:

    second opinion
    Debrajo, with such a confusing pathology report, I would be inclined to get a second pathologist to render an opinion with a more definitive stage and grade.

    The grade should have nothing to do with surgery unless you did not have a biopsy prior to surgery...my grade was given on the report for my endometrial biopsy.

    Have you asked for an explanation of your path report?
    I think UPSC is always considered Grade 3, but the path report sounds rather vague about that. Rather than trying to interpret this report yourself, have you asked your gyn oncologist to explain it? How about asking the integrative medicine doc? And then, of course, there's a second opinion option. It sounds like even tho they say the stage was 1a, they're only describing the degree of uterine involvement - they didn't sample lymph nodes, or do further staging because of your other co-morbidities (I hate that word). I think you're right on - they didn't want you "under" for any longer than they needed to given you'd just had open heart surgery. Given that you had UPSC, they decided to treat it aggressively which is probably what they would have done regardless of results of further staging. It was a judgment call which is why we place our lives in the hands of someone who we hope is well equipped to make those judgments. Did you have chemotherapy and/or radiation?

    When confused, ask for an explanation. If you're not satisfied with your oncologist's information, ask for a second opinion.

    Good luck with the integrative medicine consult. This could turn out to be very educational and so good for all your overall health issues.

    Suzanne
  • Susanna23
    Susanna23 Member Posts: 66 Member
    #9
    Double Whammy said:

    Have you asked for an explanation of your path report?
    I think UPSC is always considered Grade 3, but the path report sounds rather vague about that. Rather than trying to interpret this report yourself, have you asked your gyn oncologist to explain it? How about asking the integrative medicine doc? And then, of course, there's a second opinion option. It sounds like even tho they say the stage was 1a, they're only describing the degree of uterine involvement - they didn't sample lymph nodes, or do further staging because of your other co-morbidities (I hate that word). I think you're right on - they didn't want you "under" for any longer than they needed to given you'd just had open heart surgery. Given that you had UPSC, they decided to treat it aggressively which is probably what they would have done regardless of results of further staging. It was a judgment call which is why we place our lives in the hands of someone who we hope is well equipped to make those judgments. Did you have chemotherapy and/or radiation?

    When confused, ask for an explanation. If you're not satisfied with your oncologist's information, ask for a second opinion.

    Good luck with the integrative medicine consult. This could turn out to be very educational and so good for all your overall health issues.

    Suzanne

    Integrative doctor questions
    Dear Debrajo
    I am seeing an integrated medicine doctor here in London. It took a while to get the referral from my gyn/onc team at UCLH but it is on the NHS so free to me. I didn't go to her with specific questions - but she asked me plenty! - I wanted to have prescription of Iscador (mistletoe) therapy which I've been taking for five months now and also further Reiki healing, which I still haven't got. But I have been having training in mindfulness meditation which is really good. Actually, we have never spoken about diet but I am doing my own thing there - largely inspired by posts from here!
    I have my fourth check up coming up in a couple of weeks - I will soon be one year post adjuvant chemo for stage Ia MMMT (which is always a grade 3). I still get quite anxious about my health although to be honest I have had no real problems - and my integrative doctor has given me some homeopathic remedies for that which seem to work well for me (not that I believe in homeopathy!!(
    I hope you will find your integrative doctor as helpful as I have mine. Please let us know.
    Susan
  • debrajo
    debrajo Member Posts: 1,095 Member
    #10
    Double Whammy said:

    Have you asked for an explanation of your path report?
    I think UPSC is always considered Grade 3, but the path report sounds rather vague about that. Rather than trying to interpret this report yourself, have you asked your gyn oncologist to explain it? How about asking the integrative medicine doc? And then, of course, there's a second opinion option. It sounds like even tho they say the stage was 1a, they're only describing the degree of uterine involvement - they didn't sample lymph nodes, or do further staging because of your other co-morbidities (I hate that word). I think you're right on - they didn't want you "under" for any longer than they needed to given you'd just had open heart surgery. Given that you had UPSC, they decided to treat it aggressively which is probably what they would have done regardless of results of further staging. It was a judgment call which is why we place our lives in the hands of someone who we hope is well equipped to make those judgments. Did you have chemotherapy and/or radiation?

    When confused, ask for an explanation. If you're not satisfied with your oncologist's information, ask for a second opinion.

    Good luck with the integrative medicine consult. This could turn out to be very educational and so good for all your overall health issues.

    Suzanne

    I did ask for a better
    I did ask for a better explanation of the report...several times and was told "not to worry, staging and grading are just"tools" dr. use to co-ordinate chemo and radiation. I am printing out all my records for my dau who is a rn to take to her professor(he happens to be a cancer specialist) to go over. But unless I'm missing something, they simply didn't try to find out too much and hurried to get me off the table. I know the dr, told my husband that they decided not to take any lymph nodes(which she and I agreed to take out)because the looked "really good". But they did do a pelvic wash which was negative, and some abdomen and surrounding tissue for testing that did not test positive. She told him the polyp was confined to the uterus and had only invaded 0.4cm into the wall. So, I know as much now as then and I had to find that out by reading and searching my own records. Wonder if they are not telling me something. I know my husband will not talk to me about anything that was said or done while I was out. debrajo
  • debrajo
    debrajo Member Posts: 1,095 Member
    #11
    Susanna23 said:

    Integrative doctor questions
    Dear Debrajo
    I am seeing an integrated medicine doctor here in London. It took a while to get the referral from my gyn/onc team at UCLH but it is on the NHS so free to me. I didn't go to her with specific questions - but she asked me plenty! - I wanted to have prescription of Iscador (mistletoe) therapy which I've been taking for five months now and also further Reiki healing, which I still haven't got. But I have been having training in mindfulness meditation which is really good. Actually, we have never spoken about diet but I am doing my own thing there - largely inspired by posts from here!
    I have my fourth check up coming up in a couple of weeks - I will soon be one year post adjuvant chemo for stage Ia MMMT (which is always a grade 3). I still get quite anxious about my health although to be honest I have had no real problems - and my integrative doctor has given me some homeopathic remedies for that which seem to work well for me (not that I believe in homeopathy!!(
    I hope you will find your integrative doctor as helpful as I have mine. Please let us know.
    Susan

    Hi Susanna, All this is new
    Hi Susanna, All this is new to me! I have heard of the mistletoe therapy, but don't know much about it. Is it a pill or tea type of thing? Has your dr. mentioned anything about Nonnie juice? It ,along with cur cumin, seems to be all the rage right now. None of my dr. have said much about diet either, except to stay away from processed meats. I am trying to do the diet myself with the help of these ladies on the board and have made quite a few changes. I don't think I could ever learn to get my mind and thoughts focused! My mind is mostly like a squirrel on crack most of the time. I have a lot of trouble with anxiety and depression(which is genetic with my family) and LOTS of stress. I am 23 months NED, but had the five radiations and six taxol and carboplatin. Would love to hear more about the mistletoe and what your dr, is saying. Will let you know what mine has to say when i go bAck in May, Thanks! Debrajo
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #12
    debrajo said:

    I did ask for a better
    I did ask for a better explanation of the report...several times and was told "not to worry, staging and grading are just"tools" dr. use to co-ordinate chemo and radiation. I am printing out all my records for my dau who is a rn to take to her professor(he happens to be a cancer specialist) to go over. But unless I'm missing something, they simply didn't try to find out too much and hurried to get me off the table. I know the dr, told my husband that they decided not to take any lymph nodes(which she and I agreed to take out)because the looked "really good". But they did do a pelvic wash which was negative, and some abdomen and surrounding tissue for testing that did not test positive. She told him the polyp was confined to the uterus and had only invaded 0.4cm into the wall. So, I know as much now as then and I had to find that out by reading and searching my own records. Wonder if they are not telling me something. I know my husband will not talk to me about anything that was said or done while I was out. debrajo

    debrajo
    I my book "23 months NED" is the BEST news any UPSC patient can get. I think your and stage really is insignificant now that your treatment is complete you are 2 years NED. You had the best treatment and you are responding VERY well.

    I encourage you to reduce your anxiety and stress about this. Meditation and Exercise can help.

    All the best to you. Mary Ann
  • debrajo
    debrajo Member Posts: 1,095 Member
    #13
    daisy366 said:

    debrajo
    I my book "23 months NED" is the BEST news any UPSC patient can get. I think your and stage really is insignificant now that your treatment is complete you are 2 years NED. You had the best treatment and you are responding VERY well.

    I encourage you to reduce your anxiety and stress about this. Meditation and Exercise can help.

    All the best to you. Mary Ann

    I am believing and trusting
    I am believing and trusting that what is done has been for the best and whatever it WAS is over and of no importance now! I tend to fixate on the details so I don't obsesse about "how much time I have left"! I am going to stop reading my medical records at 2:00am and scaring myself half to death! Thanks Daisy366 and everyone. Will let y'all know if NED is still in the picture on May 21! debrajo
  • carolenk
    carolenk Member Posts: 907 Member
    #14
    debrajo said:

    I am believing and trusting
    I am believing and trusting that what is done has been for the best and whatever it WAS is over and of no importance now! I tend to fixate on the details so I don't obsesse about "how much time I have left"! I am going to stop reading my medical records at 2:00am and scaring myself half to death! Thanks Daisy366 and everyone. Will let y'all know if NED is still in the picture on May 21! debrajo

    Sorry not to respond sooner
    Debrajo

    I agree that it would be helpful to have your records looked at by another cancer specialist.

    In this sentence: "Due to multiple co-morbidities no grading was done and will be treated as stage IV ovarian cancer," the sentence only makes sense if you replace the word "grading" with "staging." I think the doctor didn't review the dictated report for errors. I think the doctor feels you should be treated as a worst case scenario rather than as the stage I case that you very possibly are.

    This sentence: "This cancer is poorly differentiated and is very aggressive," is another way of saying the tumor was grade 3; the papillary serous carcinoma is what makes it "aggressive."

    You could be one of the lucky ones whose cancer was found & treated early. I don't think there is any evidence that you are stage IV.

    BTW: feel free to hop over to the ovarian discussion board any time.
  • debrajo
    debrajo Member Posts: 1,095 Member
    #15
    carolenk said:

    Sorry not to respond sooner
    Debrajo

    I agree that it would be helpful to have your records looked at by another cancer specialist.

    In this sentence: "Due to multiple co-morbidities no grading was done and will be treated as stage IV ovarian cancer," the sentence only makes sense if you replace the word "grading" with "staging." I think the doctor didn't review the dictated report for errors. I think the doctor feels you should be treated as a worst case scenario rather than as the stage I case that you very possibly are.

    This sentence: "This cancer is poorly differentiated and is very aggressive," is another way of saying the tumor was grade 3; the papillary serous carcinoma is what makes it "aggressive."

    You could be one of the lucky ones whose cancer was found & treated early. I don't think there is any evidence that you are stage IV.

    BTW: feel free to hop over to the ovarian discussion board any time.

    The cancer specialist my
    The cancer specialist my dau. took the records agreed that someone either misspoke or mis-translated the surgery report. He also said he thinks that I am 1a grade 3 due to the type cancer. So it was caught early, but is very aggressive and MD Anderson drs. have decided in their group meeting to treat it like IV ovarian cancer. I tolerated chemo so well that I actually ask them if they were giving me enough chemo! Now I just have to set my mind to the fact that every twinge and ache is not necessarily the cancer coming back! Thanks Carolenk and have a blessed Easter! Best Debrajo

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