a needle biopsy of one slightly enlarged node asap or waiting and watching a couple of months????

maggie_wilson
maggie_wilson Member Posts: 596
edited March 2014 in Uterine/Endometrial Cancer #1
sisters,

i had worked out with my chemo and gyn-onc doctors that we would take a wait and see approach on my one slightly enlarged periaortic node that showed up on my first post treatment ct scan. in the meantime, i would continue eating very well, following the anti cancer diet, exercising, acupuncture, meditation, tumeric/pepper, ginger, etc.

then i see my acupuncturist this morning and she has a completely different take on the node. being a two time survivor of breast cancer, and seeing her mother live 11 years longer than expected with ovarian cancer, she thinks i should have the node immediately needle biopsied, and if it's cancer, have focussed radiation. period. she is concerned that if it is cancer (which she actually does not think it is), then she doesn't want it to spread. makes sense to me, especially since i actually do believe that it is cancer, though of course have a few hopeful doubts.

i emailed my chemo doctor and told her what my acupuncturist is recommending, and asked if she still thought waiting a couple more months, then having another ca 125 and possible ct/pet scan was the way to go vs needle biopsy and radiation soon. if she still thought taking a wait and see approach was best, what is her reasoning.

i've gotten the impression from both my doctors that they expect my cancer to return and that they're more concerned with my quality of life for as long as i can have it. they certainly are also interested in prolonging my life as long as possible, but my acupuncturist expects me to live, and wants me to do everything i can to save my life. so, to whom do i listen? i respect them all, but they do have different perspectives from what i can tell.

i'm waiting to hear back from my chemo doctor, who's great at responding quickly. then, if this is a longer discussion than through email, which i think it is, we'll go in soon and talk in person. in the meantime, i still need more information about a biopsy and about radiation before we make a final decision, but if any of you have some thoughts, ideas, comments, i'd love to hear from you.

thanx as always,
sisterhood,
maggie

Comments

  • upsofloating
    upsofloating Member Posts: 466 Member
    When I first had enlarged
    When I first had enlarged nodes (pelvic) on CT scan 7 months post chemo, my gyn-onc was ready to rush me into chemo with no suggestion of a biopsy, just an immediate assumption it was cancer recurrence. Well, subsequent scan showed them resolving. Enlargement may have had nothing to do with cancer, or maybe it was cancer that resolved - will never know. No chemo done. When a later scan showed an enlarged para-aorta node, new gyn-onc recommended biopsy as he would not treat without confirmation of what we were treating. Biopsy was positive. However, his opinion on treatment options was that node was cancer we could see and identify, but most likely I also had other cancer cells not yet visible. Therefore, only reasonable option was chemo - a systemic approach. Radiation and/or surgery to remove node would be localized and do nothing for other cells that could grow, spread, etc.

    I did not immediately agree to chemo but opted to wait and see in case this could resolve like pelvic nodes had. However when three month CT showed same issue, I did opt to start chemo. I've not had another scan yet to evaluate results. It's been 6 months since the last CT. Hope this helps with your decision-making, Annie
  • maggie_wilson
    maggie_wilson Member Posts: 596

    When I first had enlarged
    When I first had enlarged nodes (pelvic) on CT scan 7 months post chemo, my gyn-onc was ready to rush me into chemo with no suggestion of a biopsy, just an immediate assumption it was cancer recurrence. Well, subsequent scan showed them resolving. Enlargement may have had nothing to do with cancer, or maybe it was cancer that resolved - will never know. No chemo done. When a later scan showed an enlarged para-aorta node, new gyn-onc recommended biopsy as he would not treat without confirmation of what we were treating. Biopsy was positive. However, his opinion on treatment options was that node was cancer we could see and identify, but most likely I also had other cancer cells not yet visible. Therefore, only reasonable option was chemo - a systemic approach. Radiation and/or surgery to remove node would be localized and do nothing for other cells that could grow, spread, etc.

    I did not immediately agree to chemo but opted to wait and see in case this could resolve like pelvic nodes had. However when three month CT showed same issue, I did opt to start chemo. I've not had another scan yet to evaluate results. It's been 6 months since the last CT. Hope this helps with your decision-making, Annie

    annie, your comments were extremely helpful

    annie,
    i appreciate your comments so much. it sounds like you took a very prudent course. that was great that your first nodes resolved, whatever they were, but i'm sorry that the periaortic was positive. that's the node that's slightly enlarged in my case. i agree, that if it is cancer that we can see, then there are other cancer cells lurking about. in which case, if i don't succeed in diminishing it alternatively, may well eventually opt for chemo. have you completed chemo? and what kind of chemo were you given? was the course this time different than the first for you?? i'm certainly hoping that the results from your chemo are good, and only good. have you decided when you would have another ct scan?

    thanx so much annie. i have decided to go back to my original wait and see approach after talking to knowledgeable friends, though i will be interested in hearing what my chemo doctor has to say, in any case. i think my acupuncturist was identifying too much with me, and was wanting me to do what apparently worked for her. it just doesn't make sense to radiate one local area when there are no doubt other cancer cells there. i agree, it would take a systemic approach, if it comes to that.

    take care of yourself,

    sisterhood,
    maggie
  • kkstef
    kkstef Member Posts: 688 Member

    annie, your comments were extremely helpful

    annie,
    i appreciate your comments so much. it sounds like you took a very prudent course. that was great that your first nodes resolved, whatever they were, but i'm sorry that the periaortic was positive. that's the node that's slightly enlarged in my case. i agree, that if it is cancer that we can see, then there are other cancer cells lurking about. in which case, if i don't succeed in diminishing it alternatively, may well eventually opt for chemo. have you completed chemo? and what kind of chemo were you given? was the course this time different than the first for you?? i'm certainly hoping that the results from your chemo are good, and only good. have you decided when you would have another ct scan?

    thanx so much annie. i have decided to go back to my original wait and see approach after talking to knowledgeable friends, though i will be interested in hearing what my chemo doctor has to say, in any case. i think my acupuncturist was identifying too much with me, and was wanting me to do what apparently worked for her. it just doesn't make sense to radiate one local area when there are no doubt other cancer cells there. i agree, it would take a systemic approach, if it comes to that.

    take care of yourself,

    sisterhood,
    maggie

    Thinking about you, Maggie!
    Maggie, I have been following your thoughtful, deliberate search for reaching a decision on your journey. You have researched, explored alternatives, sought out advice from your medical team and other health care professionals, implemented complementary health practices, etc. You have done it all!! And only you can make the final decision on the path that you will take. I just want you to know that it is never an easy decision and I know that you will make the one BEST for you at the time you make it.

    You remain in my thoughts....Blessings always! Karen
  • maggie_wilson
    maggie_wilson Member Posts: 596
    kkstef said:

    Thinking about you, Maggie!
    Maggie, I have been following your thoughtful, deliberate search for reaching a decision on your journey. You have researched, explored alternatives, sought out advice from your medical team and other health care professionals, implemented complementary health practices, etc. You have done it all!! And only you can make the final decision on the path that you will take. I just want you to know that it is never an easy decision and I know that you will make the one BEST for you at the time you make it.

    You remain in my thoughts....Blessings always! Karen

    thank you, karen


    i really appreciate your comments, karen, and always have. i think so many of us are trying to figure out what the best route is, with really not so much information on the one hand, and too much information on the other. right now i feel good just waiting until end of august to take the ca 125 again, and go from there. i wrote my dear acupuncturist and told her i had seriously considered whqt she had said about needle biopsy and radiation asap, and decided against it and why. i know she'll support whatever i decide to do, and will treat me more aggressively now, as i've requested.

    i have to say i'm feeling quite good from my new diet and exercise; right now, my partner and i are in a beautiful suite at the rio in vegas, playing in the poker tournaments. nothing is more fun for us. who can think about cancer when you have a pair of pocket aces in your hand? you get the idea. it is somewhat of a challenge to eat right here, but it's doable, and so is the walking. just going from place to place within the hotel involves a lot of walking, so i'm still getting my exercise, and after lots of playing and walking, a nice jacuzzi tub bath....

    thanx again, karen.

    sisterhood,
    maggie
  • daisy366
    daisy366 Member Posts: 1,458 Member

    thank you, karen


    i really appreciate your comments, karen, and always have. i think so many of us are trying to figure out what the best route is, with really not so much information on the one hand, and too much information on the other. right now i feel good just waiting until end of august to take the ca 125 again, and go from there. i wrote my dear acupuncturist and told her i had seriously considered whqt she had said about needle biopsy and radiation asap, and decided against it and why. i know she'll support whatever i decide to do, and will treat me more aggressively now, as i've requested.

    i have to say i'm feeling quite good from my new diet and exercise; right now, my partner and i are in a beautiful suite at the rio in vegas, playing in the poker tournaments. nothing is more fun for us. who can think about cancer when you have a pair of pocket aces in your hand? you get the idea. it is somewhat of a challenge to eat right here, but it's doable, and so is the walking. just going from place to place within the hotel involves a lot of walking, so i'm still getting my exercise, and after lots of playing and walking, a nice jacuzzi tub bath....

    thanx again, karen.

    sisterhood,
    maggie

    Maggie
    I like your spirit. Sounds like you are intelligently weighing all options. I remember Mia's (loicee's) comment that "there is nothing that needs to be handled urgently".

    Wishing you lots of fun in Vegas - it sure has lots of distractions to offer us doesn't it!!!

    Many blessings, Mary Ann
  • kkstef
    kkstef Member Posts: 688 Member

    thank you, karen


    i really appreciate your comments, karen, and always have. i think so many of us are trying to figure out what the best route is, with really not so much information on the one hand, and too much information on the other. right now i feel good just waiting until end of august to take the ca 125 again, and go from there. i wrote my dear acupuncturist and told her i had seriously considered whqt she had said about needle biopsy and radiation asap, and decided against it and why. i know she'll support whatever i decide to do, and will treat me more aggressively now, as i've requested.

    i have to say i'm feeling quite good from my new diet and exercise; right now, my partner and i are in a beautiful suite at the rio in vegas, playing in the poker tournaments. nothing is more fun for us. who can think about cancer when you have a pair of pocket aces in your hand? you get the idea. it is somewhat of a challenge to eat right here, but it's doable, and so is the walking. just going from place to place within the hotel involves a lot of walking, so i'm still getting my exercise, and after lots of playing and walking, a nice jacuzzi tub bath....

    thanx again, karen.

    sisterhood,
    maggie

    Enjoy Vegas!
    Maggie....sounds like you are having a fun time in Vegas.....May you hit the BIG JACKPOT!!

    Have a wonderful time and Good luck!!

    Karen
  • maggie_wilson
    maggie_wilson Member Posts: 596
    daisy366 said:

    Maggie
    I like your spirit. Sounds like you are intelligently weighing all options. I remember Mia's (loicee's) comment that "there is nothing that needs to be handled urgently".

    Wishing you lots of fun in Vegas - it sure has lots of distractions to offer us doesn't it!!!

    Many blessings, Mary Ann

    thanx to you, mary ann

    i may have mixed up your name with karen's, i think because the feelings towards both of you are so similar: much appreciation and gratitude for your on-going comments and support.

    yes, vegas is a blast! for those who are poker fans, many of the big names are here and playing, which is a treat in and of itself. karen, i am definitely working on winning the big jackpot; i think we all are. in the meantime, i'm happy enough now playing the little tourneys and slot machines, and winning here and there.

    i did hear from my acupuncturist who said she supports my decision 100%, and apologized if she asked too many question! i assured her that she can't ask too many questions, that i depend upon her for my critical 3rd eye, and need her to continue to let me know of any concerns she has re: my choices. i so value her input, as i do my dear allies/comrades- in- arms, here.

    best to you,

    sisterhood,
    maggie
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    kkstef said:

    Enjoy Vegas!
    Maggie....sounds like you are having a fun time in Vegas.....May you hit the BIG JACKPOT!!

    Have a wonderful time and Good luck!!

    Karen

    Sorry I'm so late chiming in.
    You're one of my favorite posters here, and I've thought a lot about you and this decision. If your decision is firmly made, then just ignore this post, and know that I have had you on my mind.

    But you seen to believe in your heart or are at least worried that this node may be malignant. A needle biopsy may bring you surprising GOOD news that could set that nagging worry aside. Regardless the results would provide valuable information, and whatever it showed, even a malignancy, certainly wouldn't make chemo your only hard-and-fast option. I am thinking you may want to take this half-step. (((hugs))
  • maggie_wilson
    maggie_wilson Member Posts: 596

    Sorry I'm so late chiming in.
    You're one of my favorite posters here, and I've thought a lot about you and this decision. If your decision is firmly made, then just ignore this post, and know that I have had you on my mind.

    But you seen to believe in your heart or are at least worried that this node may be malignant. A needle biopsy may bring you surprising GOOD news that could set that nagging worry aside. Regardless the results would provide valuable information, and whatever it showed, even a malignancy, certainly wouldn't make chemo your only hard-and-fast option. I am thinking you may want to take this half-step. (((hugs))

    thanx so much for your comments, linda

    linda,

    first things first: that's a great new photo of you; we can really see your shining face against the backdrop of the ocean! it's a lovely picture. also, your new photo has inspired me to have my girlfriend put the photo taken of me at the world series of poker, women's event, last weekend in vegas up on this site. (she does all the techie stuff)

    linda, i would never "ignore" a post of yours; you probably already know you're one of my favorite posters as well, and i always take what you have to say seriously. my decision at this point, however, after much back and forth, is now firmly made, and once i went back to my original plan, i felt much better. which is not to say that if i were to have the needle biopsy, and it was good news, i wouldn't be ecstatic. i do actually believe that sometimes we're surprised by good news!

    i actually don't have a feeling in my heart, or gut feeling that the node is cancer, it's more that i'm inferring that cancer is most likely, and so am living with this nagging worry. i do know there are benign reasons why a node would be enlarged; it's just more likely to be cancer than anything else. i think you're right that the results would provide valuable information, whatever they showed, but i also had concerns about spreading cancer cells by disturbing the node. so, i made the decision that made me feel better, right or wrong. and, i assume i can always have a needle biopsy if i were to change my mind. interesting to me that neither my gyn-onc, or chemo doctor even mentioned the possibility of a needle biopsy. they both preferred to take a wait and see approach. in fact, my chemo doctor thought i could wait 6 months if i wanted before taking another ca 125, but i decided 3 months was fine. although, if i feel as good in 3 months as i do now, i may extend the time before taking any more tests.

    my chemo doctor, i think, believes it's cancer; my acupuncturist is quite sure it isn't. i wish i had an intuitive sense about it, or have a dream or something that would at least let me know what my unconscious thinks. i wonder how many of us have had dreams that have given us information about what's going on in our bodies?? i know i haven't; kinda surprises me not to have had dreams about cancer except for one dream in which i say about something, in an entirely different context, that "it's too soon." this wasn't too hard to interpret.....

    in any case, i so appreciate your comments and concern, linda; it does make me feel good to know you, and others have been thinking of me.

    i'm also thinking of you, and hoping you're doing ok. please let us know what decisions you make re: treatment.

    ((((hugs back to you)))

    sisterhood,
    maggie
  • Songflower
    Songflower Member Posts: 608

    thanx so much for your comments, linda

    linda,

    first things first: that's a great new photo of you; we can really see your shining face against the backdrop of the ocean! it's a lovely picture. also, your new photo has inspired me to have my girlfriend put the photo taken of me at the world series of poker, women's event, last weekend in vegas up on this site. (she does all the techie stuff)

    linda, i would never "ignore" a post of yours; you probably already know you're one of my favorite posters as well, and i always take what you have to say seriously. my decision at this point, however, after much back and forth, is now firmly made, and once i went back to my original plan, i felt much better. which is not to say that if i were to have the needle biopsy, and it was good news, i wouldn't be ecstatic. i do actually believe that sometimes we're surprised by good news!

    i actually don't have a feeling in my heart, or gut feeling that the node is cancer, it's more that i'm inferring that cancer is most likely, and so am living with this nagging worry. i do know there are benign reasons why a node would be enlarged; it's just more likely to be cancer than anything else. i think you're right that the results would provide valuable information, whatever they showed, but i also had concerns about spreading cancer cells by disturbing the node. so, i made the decision that made me feel better, right or wrong. and, i assume i can always have a needle biopsy if i were to change my mind. interesting to me that neither my gyn-onc, or chemo doctor even mentioned the possibility of a needle biopsy. they both preferred to take a wait and see approach. in fact, my chemo doctor thought i could wait 6 months if i wanted before taking another ca 125, but i decided 3 months was fine. although, if i feel as good in 3 months as i do now, i may extend the time before taking any more tests.

    my chemo doctor, i think, believes it's cancer; my acupuncturist is quite sure it isn't. i wish i had an intuitive sense about it, or have a dream or something that would at least let me know what my unconscious thinks. i wonder how many of us have had dreams that have given us information about what's going on in our bodies?? i know i haven't; kinda surprises me not to have had dreams about cancer except for one dream in which i say about something, in an entirely different context, that "it's too soon." this wasn't too hard to interpret.....

    in any case, i so appreciate your comments and concern, linda; it does make me feel good to know you, and others have been thinking of me.

    i'm also thinking of you, and hoping you're doing ok. please let us know what decisions you make re: treatment.

    ((((hugs back to you)))

    sisterhood,
    maggie

    Your worry
    I would get it biopsied and go with systemic chemo and possibly radiation. I think there have to be a million cells for a cancer to show on PT scan and I don't know what the ratio is on CT scan. My old oncologist from my breast cancer days believed systemic chemo is what gives you time. It gets the seeds we cannot see.

    You are a brave and wonderful woman. You're on the prayer list!


    Diane
  • maggie_wilson
    maggie_wilson Member Posts: 596

    Your worry
    I would get it biopsied and go with systemic chemo and possibly radiation. I think there have to be a million cells for a cancer to show on PT scan and I don't know what the ratio is on CT scan. My old oncologist from my breast cancer days believed systemic chemo is what gives you time. It gets the seeds we cannot see.

    You are a brave and wonderful woman. You're on the prayer list!


    Diane

    diane, thank you so much for your response and kind words

    hi diane,

    just don't know for sure whether it's cancer or not, and i do know if it is, that a needle biopsy would no doubt spread it. the charge nurse at the oncology center looked at my ct scan and thought it wasn't cancer, but instead was scar tissue, and that if it were cancer, there would be a lot of debris around the node, and there wasn't any. so, who really knows?? she thought i should not have a biopsy at this time, so i'm just going with my two doctors and charge nurse for now. i agree, if it is cancer, i would go for the systemic chemo as the only way to get at all the cancer cells that don't show up. meanwhile, i'm feeling good, except for a sore back (which by the way is not cancer because it wouldn't be so responsive to motrin if it were! i'm going to post re: this, although maybe most of you know this already. i hadn't been sure.)

    i'm scheduled for a ca 125 towards the end of august, and depending on the result will or will not have a ct/pet scan. truthfully, if i'm feeling as well then as i am now, i'll probably postpone the blood test for another 3 months as my chemo doctor suggested, if i wanted. and i may want.

    thank you again for your kind words to me; i appreciate being on the prayer list. hope you're holding up ok. i think of you as well.

    sisterhood
    maggie