Lymph Nodes and Chemo?
Hello good friends,
I'm having surgery in 6 days and had my pre-op today. As usual, my oncologist failed to develop different scenarios ("we won't know until we get in there"), so I don't know what to expect. I'm having a total hyster (ovaries et al), pelvic & para-aortic lymphadenopathy and possible omentecomy. I have Grade III undifferentiated carcinoma, with some level of myometrial invasion. It does not appear the cervix is affected. On my CT scan, one pelvic lymph node was at the upper limit of normal (10mm), which the doc said had a 50/50 chance of being cancerous. She confirmed that *any* lymph node involvement automatically constitutes stage III, which I still don't quite understand. She refused to confirm that radiation and chemo was forthcoming, although it's obvious it will be. I apologize for this long post, but wonder if anyone can help me understand the "1 node touched = stage III" part, along with the "we're taking most of your lymph notes but won't confirm chemo" part? I'm not afraid of chemo - I just want this crap out of me - but can't quite figure out the onc's decision making process. Thank you all so much for your feedback!!
Comments
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Lymph Node Involvement
It is true that any spread to the regional lymph nodes means it is Stage IIIC1. Spread to the para-aortic lymph nodes is Stage IIIC2. Sometimes lymph nodes are enlarged for reasons other than cancer, and sometimes lymph nodes aren't enlarged at all but still contain cancerous cells. My gyn/onc was actually surprised when 4 of my lymph nodes came back positive after my hysterectomy, because they were not enlarged at all. Standard of care for this stage and grade calls for chemo, often either followed by radiation or the "sandwich" treatment, where the chemo sessions are split in two and the radiation is done in between the chemo. I'm sorry your doctor hasn't been more forthcoming with possible scenarios. Perhaps she doesn't want to worry you until she knows exactly what's in there, but you are certainly entitled to know what the possibilities are.
I would like to say that it was easier for me to take things just one step at a time. I know that's hard, but your first "job" is to take care of yourself after surgery and heal from that. Once the pathology comes back, then you and your doc will come up with a plan. And as others will tell you, once that it is in place, you will feel a lot better mentally.
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GenerousEditgrl said:Lymph Node Involvement
It is true that any spread to the regional lymph nodes means it is Stage IIIC1. Spread to the para-aortic lymph nodes is Stage IIIC2. Sometimes lymph nodes are enlarged for reasons other than cancer, and sometimes lymph nodes aren't enlarged at all but still contain cancerous cells. My gyn/onc was actually surprised when 4 of my lymph nodes came back positive after my hysterectomy, because they were not enlarged at all. Standard of care for this stage and grade calls for chemo, often either followed by radiation or the "sandwich" treatment, where the chemo sessions are split in two and the radiation is done in between the chemo. I'm sorry your doctor hasn't been more forthcoming with possible scenarios. Perhaps she doesn't want to worry you until she knows exactly what's in there, but you are certainly entitled to know what the possibilities are.
I would like to say that it was easier for me to take things just one step at a time. I know that's hard, but your first "job" is to take care of yourself after surgery and heal from that. Once the pathology comes back, then you and your doc will come up with a plan. And as others will tell you, once that it is in place, you will feel a lot better mentally.
Thank you so much for responding. That's what I love about this board - the generosity of members in sharing their time and experience. I'm a planner by nature, so future information is critical for me to manage my stress. I'd understood the standard of care to be such as you described, so was concerned when my onc wasn't giving me some parameters to work within. Somehow, within my mind the term "standard" is very comforting, as in "you're having the standard protocol indicated for this type of situation....standard of care is chemo and radiation....etc". For me standard means others have been there before me and I'm not alone with information being doled out on a need to know basis. Hope that makes sense! Thank you again.
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I agree with Chris. It wasEditgrl said:Lymph Node Involvement
It is true that any spread to the regional lymph nodes means it is Stage IIIC1. Spread to the para-aortic lymph nodes is Stage IIIC2. Sometimes lymph nodes are enlarged for reasons other than cancer, and sometimes lymph nodes aren't enlarged at all but still contain cancerous cells. My gyn/onc was actually surprised when 4 of my lymph nodes came back positive after my hysterectomy, because they were not enlarged at all. Standard of care for this stage and grade calls for chemo, often either followed by radiation or the "sandwich" treatment, where the chemo sessions are split in two and the radiation is done in between the chemo. I'm sorry your doctor hasn't been more forthcoming with possible scenarios. Perhaps she doesn't want to worry you until she knows exactly what's in there, but you are certainly entitled to know what the possibilities are.
I would like to say that it was easier for me to take things just one step at a time. I know that's hard, but your first "job" is to take care of yourself after surgery and heal from that. Once the pathology comes back, then you and your doc will come up with a plan. And as others will tell you, once that it is in place, you will feel a lot better mentally.
I agree with Chris. It was hard at first but taking it one step at a time was how I dealt with it and explained it to my sister. I couldn't have explained it better.
I also understand what your doctor says about 'not knowing until he/she gets in there'. I had a pre-surgery CT, told they didn't see anything, but the gyn onc said I need to LOOK. I went in thinking I was going to have the da Vinci robot and told if he found anything it would turn in to a traditional surgery hysterectomy. I told my family and friends, when I wake up, all I wanted to hear was if I had the da Vinci because that would tell me a little bit about what I would be dealing with.
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Professional Worrier
My family has me labeled as a professional worrier. I prefer to think of myself as pro-active, but I like how you consider yourself a planner!
When fighting this cancer and getting yourself through surgery and any treatments that follow, knowledge and understanding about what you need to put yourself through, why, and what to expect during it is empowering and comforting. The thing is, there are a lot of variables to this cancer such as your age and health, what type, stage, and grade you have, medical resources available to you, your doctor's opinions, and so on and so forth that will impact what direction your care takes. There's a lot of information out there (and here) that can scare you witless unnecessarily when it doesn't apply to you in your particular circumstances. That's why it's important to take this one step at a time for the sake of your own sanity.
It takes a while for your pathology to be done, mine took over a month because it got sent to 3 different labs before it could be finalized, so use that time to heal in peace from your surgery. It can only help you to be in a good place for whatever you might face after that. When you know what comes next is the time to research and prepare yourself for that specifically. There's a saying "Don't borrow trouble" that really applies to fighting this cancer. It's a long haul getting through the surgery and any treatment that follows, so try to save your energy for that rather than spending it on worrying about scenarios that may not apply to your particular situation when you don't know what that is yet.
Good luck on the 28th, I'll be praying for an easy and speedy recovery for you!
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Wishes for a successful 28th
agree with the other ladies- one day at a time is how I get through it- I have called it walking through the next OPEN door because sometimes they are quite obviously closed and I choose not to stand there pounding on it but instead try the next door. I pray a lot and when I have taken too much on myself and am overwhelmed I am reminded again and again that I need to give up that burden because my life and times are all in God's hands. I don't know what your beliefs are but that is what helps me.
Please know that we'll all be gathered around you as you go in for surgery- we'll be waiting to hear how you are doing and praying for the you, your team and the best outcome. (((HUGS)))
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Lymph Nodes
I did not have a CT scan before my radical hysterectomy and pelvic and paraaortic lymphadenectomy for endometrial cancer in 1999. During my surgery, my gynecologic oncologist found (according to my Operative Report) "palpably enlarged lymph nodes in the obturator fossa on the left side, and large, but not overly large nodes on the right side." A week after surgery, the pathologist issued his report which found that all 30 lymph nodes were negative for cancer.
I don't think one lymph node that a CT reports is at the "upper limit of normal" is indicative of much of anything. If your doctor says there's a 50/50 chance of the node being cancerous, that means it's just as likely that it's not cancerous. I know it's hard, and I was never good at taking this advice myself, but try not to worry too much at this point.
Best of luck to you at your upcoming surgery.
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Thoughtful
Bless you all for the fast and thoughtful responses, they do help ease my mind. My problem is this: my hospital - a big city, name brand teaching facility - is undergoing reorganizaiton in the genecological cancer unit and the non-surgical services are for crap. I mean, non-existant. It's really increased my stress, making me doubly thankful you are here to fill some of that void. I have no nurse navigator, no new patient information package, no "we're here for you, call us any time, we'll support you every step of the way" type stuff, *nothing*. The sum total of information I've been given was the ACS uterine cancer booklet (because *that's* uplifting) and a list of support groups. It's become clear I am not in a cancer center, I'm in a oncological surgical center. (I've worked in social services in the past and have some frame of reference). I have friends w/various cancers whose experiences have all been radically different to mine. One of them - and attorney and breast cancer survivor - went with me yesterday, listened to me again ask again about support services, and heard the 'under reorganization' and 'we don't have that' comments. As we walked out, she said: your surgeon is obviously competent. Focus on that now, then you are OUT of here. This is NOTHING like my experience, you are going to my hospital (another branch of mine, in a different town). So that's the sordid tale of why I'm pestering y'all for what is basic information I'm not getting at home....Making you, my new friends, the bedrock of my sanity (such as that is).
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That was a great idea for support!derMaus said:Thoughtful
Bless you all for the fast and thoughtful responses, they do help ease my mind. My problem is this: my hospital - a big city, name brand teaching facility - is undergoing reorganizaiton in the genecological cancer unit and the non-surgical services are for crap. I mean, non-existant. It's really increased my stress, making me doubly thankful you are here to fill some of that void. I have no nurse navigator, no new patient information package, no "we're here for you, call us any time, we'll support you every step of the way" type stuff, *nothing*. The sum total of information I've been given was the ACS uterine cancer booklet (because *that's* uplifting) and a list of support groups. It's become clear I am not in a cancer center, I'm in a oncological surgical center. (I've worked in social services in the past and have some frame of reference). I have friends w/various cancers whose experiences have all been radically different to mine. One of them - and attorney and breast cancer survivor - went with me yesterday, listened to me again ask again about support services, and heard the 'under reorganization' and 'we don't have that' comments. As we walked out, she said: your surgeon is obviously competent. Focus on that now, then you are OUT of here. This is NOTHING like my experience, you are going to my hospital (another branch of mine, in a different town). So that's the sordid tale of why I'm pestering y'all for what is basic information I'm not getting at home....Making you, my new friends, the bedrock of my sanity (such as that is).
Good for you taking your friend with you and repeating the questions and getting the answers- you are being a super good advocate for yourself and you sound like you hit the nail on the head- you are not in a cancer center- glad your friend confirmed you have a competent surgeon and that after that is done you will find better and probably way more applicable care.
Do try and stay in the day you are in and enjoy these last few days ahead of you. I hope with friends/family and a sense of THANKFULNESS for everything you do have
Some of the worst things for me about the surgery were the GAS that caused horrible horrible aching in shoulders etc. and of course elimination was not a treat, so do take whatever they offer you for pain, elemination, gas etc. etc. Everything will be ok and you will be on your way to the next steps of your journey in no time. (((HUGS)))0 -
Thank you so much Nellasing.Nellasing said:That was a great idea for support!
Good for you taking your friend with you and repeating the questions and getting the answers- you are being a super good advocate for yourself and you sound like you hit the nail on the head- you are not in a cancer center- glad your friend confirmed you have a competent surgeon and that after that is done you will find better and probably way more applicable care.
Do try and stay in the day you are in and enjoy these last few days ahead of you. I hope with friends/family and a sense of THANKFULNESS for everything you do have
Some of the worst things for me about the surgery were the GAS that caused horrible horrible aching in shoulders etc. and of course elimination was not a treat, so do take whatever they offer you for pain, elemination, gas etc. etc. Everything will be ok and you will be on your way to the next steps of your journey in no time. (((HUGS)))Thank you so much Nellasing. I appreciate the validation and support very, very much. Happy thanksgiving to all of us!
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BTW
Never think that airing your questions or concerns here are ever a form of pestering! We are all here for each other and you never know if what you ask or comment on is in turn helpful to someone else.
Also, IMHO, your caregivers are of more import than what institution they work out of. Most oncologists, especially in larger cities, have the ability to work at more than one institution, so by all means ask yours if there are any other options for you within a reasonable distance. An institution's upheaval is no excuse for them to suspend the availability of services you need.
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Thank God that you had yourderMaus said:Thoughtful
Bless you all for the fast and thoughtful responses, they do help ease my mind. My problem is this: my hospital - a big city, name brand teaching facility - is undergoing reorganizaiton in the genecological cancer unit and the non-surgical services are for crap. I mean, non-existant. It's really increased my stress, making me doubly thankful you are here to fill some of that void. I have no nurse navigator, no new patient information package, no "we're here for you, call us any time, we'll support you every step of the way" type stuff, *nothing*. The sum total of information I've been given was the ACS uterine cancer booklet (because *that's* uplifting) and a list of support groups. It's become clear I am not in a cancer center, I'm in a oncological surgical center. (I've worked in social services in the past and have some frame of reference). I have friends w/various cancers whose experiences have all been radically different to mine. One of them - and attorney and breast cancer survivor - went with me yesterday, listened to me again ask again about support services, and heard the 'under reorganization' and 'we don't have that' comments. As we walked out, she said: your surgeon is obviously competent. Focus on that now, then you are OUT of here. This is NOTHING like my experience, you are going to my hospital (another branch of mine, in a different town). So that's the sordid tale of why I'm pestering y'all for what is basic information I'm not getting at home....Making you, my new friends, the bedrock of my sanity (such as that is).
Thank God that you had your friend with you and her support! Please don't hesitate to ask us questions. Even those of us who are at cancer centers still have questions, too. There are so many here who have much experience and knowledge to share.
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I got cut off, oops! PrayersSoup52 said:Thank God that you had your
Thank God that you had your friend with you and her support! Please don't hesitate to ask us questions. Even those of us who are at cancer centers still have questions, too. There are so many here who have much experience and knowledge to share.
I got cut off, oops! Prayers for a successful surgery!
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Yes to what Chris and others
Yes to what Chris and others have said. Some of the reticence on your medical team's part may be related to what is different about this kind of cancer compared with some other types. They really do not know what they're dealing with until they get in there, so it would be irresponsible to speculate. It can't be diagnosed with a biopsy, and if it isn't caught early it is an aggressive kind of cancer. But there will be time to think about what comes next when you have some solid information. For now, I recommend trying to focus on setting up a cozy environment for your recovery and let that distract you from worrying about the things you can't control. Good luck. I found surgery much easier to deal with than I expected. Each step makes you stronger.
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Confirming stuff
I got the opposite..."no one is sayiing it's cancer"...Oh WOW "it's cancer...but it is early stage" let's do a hysterctomy and take out all that other stuff too..oh WHOOPS it is stage lllc Grade 3 cancer...main thing is they can't really tell you anything until they have done a biopsy/test etc. They sounded more surprised when they told me about the cancer than I was...best to just take it all as it comes and try not to focus on being afraid...
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I can only imagine what yourMoped7946 said:Confirming stuff
I got the opposite..."no one is sayiing it's cancer"...Oh WOW "it's cancer...but it is early stage" let's do a hysterctomy and take out all that other stuff too..oh WHOOPS it is stage lllc Grade 3 cancer...main thing is they can't really tell you anything until they have done a biopsy/test etc. They sounded more surprised when they told me about the cancer than I was...best to just take it all as it comes and try not to focus on being afraid...
I can only imagine what your pain has been like to be whiplashed through that cycle, you have my heartfelt sympathies. On my end, I can categorically say that NO ONE has offered me any false hope, quite the opposite. This board and the ACS hotline have saved my sanity and given me some hope that I can get through this alive. I've certainly gotten a crash course in smelling the roses lately and must admit that they do smell better than I remembered (but would have preferred that revelation not be delivered by the 2x4 of cancer slamming into my head, thank you very much!). B
p.s. I like the pink hat, it's a nice contrast with the black top. You are giving me future style ideas.
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Ask Until You Get Answers
It might be difficult to try to pick apart your biopsy pathology at this stage, as it's true, the surgeon will get a more complete picture after surgery, but it is worthwhile to ask as much as you can about your surgery beforehand. Most people know this, but I was way too trusting. I am so sorry I did not push for more information about the lymphadenectomy. My surgeon, by her own admission after the surgery, was trying to get as many lymph nodes as she possibly could. She got 84 and I now have no lymphatic uptake on the backside of my body and all kinds of progressing disfigurement and pain. It's a new disease, in addition to the cancer, and in my case a nightmare.
American Cancer Society suggests that it's okay to postpone surgery for the time it might take to get more than one opinion. (And as MAbound said above, her biopsy pathology report took over a month.)
Best to you, derMaus, I love your fighting spirit!
-jane
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Lymph nodesEditgrl said:Lymph Node Involvement
It is true that any spread to the regional lymph nodes means it is Stage IIIC1. Spread to the para-aortic lymph nodes is Stage IIIC2. Sometimes lymph nodes are enlarged for reasons other than cancer, and sometimes lymph nodes aren't enlarged at all but still contain cancerous cells. My gyn/onc was actually surprised when 4 of my lymph nodes came back positive after my hysterectomy, because they were not enlarged at all. Standard of care for this stage and grade calls for chemo, often either followed by radiation or the "sandwich" treatment, where the chemo sessions are split in two and the radiation is done in between the chemo. I'm sorry your doctor hasn't been more forthcoming with possible scenarios. Perhaps she doesn't want to worry you until she knows exactly what's in there, but you are certainly entitled to know what the possibilities are.
I would like to say that it was easier for me to take things just one step at a time. I know that's hard, but your first "job" is to take care of yourself after surgery and heal from that. Once the pathology comes back, then you and your doc will come up with a plan. And as others will tell you, once that it is in place, you will feel a lot better mentally.
Agree completely - the surgeon will take out as much disease as they can. My tumors were both large and small - the small ones were as small as grains of sand. Also have aortic nodes and pelvic and axillary nodes involved. Surgery is the first step to getting you as disease free as possible and even if they believe they got it all, they will put you on a chemo course for likely 6 weeks to start and then scan to see how it worked. I've never had radiation. Everyone's different of course - but get all the info you can. 2nd opinions can help you gain new perspective - best thing I ever did was to have my records sent to another doctor. Good Luck and hang in there - one day at a time and practice imagining the BEST POSSIBLE OUTCOME! XOX,
Billie
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Oh my!DrienneB said:Ask Until You Get Answers
It might be difficult to try to pick apart your biopsy pathology at this stage, as it's true, the surgeon will get a more complete picture after surgery, but it is worthwhile to ask as much as you can about your surgery beforehand. Most people know this, but I was way too trusting. I am so sorry I did not push for more information about the lymphadenectomy. My surgeon, by her own admission after the surgery, was trying to get as many lymph nodes as she possibly could. She got 84 and I now have no lymphatic uptake on the backside of my body and all kinds of progressing disfigurement and pain. It's a new disease, in addition to the cancer, and in my case a nightmare.
American Cancer Society suggests that it's okay to postpone surgery for the time it might take to get more than one opinion. (And as MAbound said above, her biopsy pathology report took over a month.)
Best to you, derMaus, I love your fighting spirit!
-jane
Thank you for the candid feedback but, oh my! they took *84* of your lymph nodes? I signed a release for removal of 10-30 pelvic and para-aortic nodes, and was assured that only 5-8% of patients have any after effects w/that number and said effects are "easily manageable". Hmmm....
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Thank you my friend. TheDrienneB said:Yea, I got a bum deal
Wishing a successful surgery, a good report, quick recovery and wise care in coming weeks. -j
Thank you my friend. The hardest thing about being in the hospital will be not having access to my peeps on this board!
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