Lymph vascular space invasion (LVSI) on pathology report

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Comments

  • Lyn70
    Lyn70 Member Posts: 214 Member
    cmb said:

    Radiation

    Lyn,

    Glad to hear you finished chemo, despite the issue with the last infusion. That's always a relief. The number of external radiation sessions does vary, but I had 25 sessions, which seems pretty common here. Because of the Labor Day holiday, I went into the sixth week. It is tedious to go there every day, but once the initial pre-radiation setup is done, the sessions themselves don't take very long. I chose to go early each day so I could get it out of the way for the day.

    Thank you for your reply, cmb

    Thank you for your reply, cmb.

    5 weeks is likely for me considrring we both had LSVI on our path reports. 

    I am not as fearful now talking with those that have had radiation. I am going to get prebiotics and follow a low fiber diet to control diarrhea. My CT indicates 'checking for bony masses on my pelvis. I dont understand the meaning of this. 

  • Harmanygroves
    Harmanygroves Member Posts: 476 Member
    edited June 2021 #23
    LVSI Present

    Hey, everyoneCool I'm new here, so haven't really told my story yet, but in a nutshell, I started getting a diagnosis in mid January with a late night e mail from my doctor that sounded a bit frantic. By mid February, I was in surgery --d and c, hysteroscopy, biopsies, polypectomy, etc., and following a diagnosis of endometrial adenocarcinoma (grade 1, thank God for that, right?), was scheduled for the big surgery.

    That's all a different story, but to get to the point, I had 83% myometrial invasion and LVSI present, so am now wrapping up my final brachytherapy session this coming Thursday. In the 1988 charts, I would have been Stage 1 C, but am 1 B owing to them changing how they stage those with high myometrial invasion together with 1 B. Grade 1, Stage 1 B with myometrial invasion 83% and LVSI present, with lower uterine tumor, if I'm remembering correctly. 

    I completely changed cancer teams owing to a lot of weirdness with oncological surgeon, and a complete reluctance on his part to answer my questions. Fortunately, I researched and read and read and researched, and was aware before my post op with him that my myometrial invasion and LVSI would be pointing to brachytherapy. I was able to warn my husband, who has not done well with all this. Well, he's been great, but he has watched me spend hours trying to get to the bottom of all the acronyms and bs answers from my doctor, and he's seen me suffer greatly.

    I am now very curious about my LVSI. Recently, my radiological oncologist shared nomograms with me that help me with specific data and percentages about my changes for local and distant recurrence. That helps me. 

    Here's the trouble for me: I keep feeling like I've missed something. I keep remembering questions or worries that haven't been addressed yet.

    --why is it that cancer and etc. in the lower part of the uterus is supposed to be problematic?

    --why didn't I find out where my LVSI was? I left that doctor, and now wonder if I can figure it out (of course, right?)

    I'm exhausted from this last six months. Surgery was March 28th, and I'm no longer feeling like my heart is jumping out of my chest. 

     

     

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Welcome Harmanygroves. Really

    Welcome Harmanygroves. Really glad you found us and so sorry you needed to. I don't have answers to your questions but I have a suggestion. If your doctor provides a web site with the ability to send emails to them, you may want to consider doing so with your questions.

    I am 5 years out from a high grade cancer. Your doubts will subside as time goes on. Some day this will all be in your rear view mirror. Never totally gone, but it won't be in the front of all of your thoughts. If you aren't exercising, please consider walking some every day. You will be amazed at how much better you will feel.

    I'm sure some of our wonderful ladies will be along to give you more information soon.

    Love and Hugs,

    Cindi

  • Harmanygroves
    Harmanygroves Member Posts: 476 Member
    edited June 2021 #25

    Welcome Harmanygroves. Really

    Welcome Harmanygroves. Really glad you found us and so sorry you needed to. I don't have answers to your questions but I have a suggestion. If your doctor provides a web site with the ability to send emails to them, you may want to consider doing so with your questions.

    I am 5 years out from a high grade cancer. Your doubts will subside as time goes on. Some day this will all be in your rear view mirror. Never totally gone, but it won't be in the front of all of your thoughts. If you aren't exercising, please consider walking some every day. You will be amazed at how much better you will feel.

    I'm sure some of our wonderful ladies will be along to give you more information soon.

    Love and Hugs,

    Cindi

    Thank you so much, Cindi!

    I'm grateful for the welcome. I was kind of wondering if in my brief time here, I was posting too much. I've used a Caring Bridge page since January, and am by nature and trade a writer and questioner. I ponder on things until I understand, which is a blessing and a curse. 

    I typically "clock" between 7k and 14K on my fitbit daily, and yes, it does help. I've walked 258 miles since April, when I started walking a virtual Camino de Santiago (the Norte route!). I've never walked the real Norte route, although I walked the 500-mile Frances route in 2015, and have walked twice more in Spain. 

    Today I will begin working out in an amazing gym near my cancer clinic in Portland, Oregon, and am scheduled for lap swims too, but need to call my radiology office to see if my "radiating" vag cuff is okay to be in a salt water pool! I have had "ouchy" feelings considering that, but during the covid year, I gained weight and stress.

    * * *

    When we are at our very most vulnerable and incapacitated, we must think with the most clarity. That's how I've found this cancer journey to be.

    * * *

    My questions don't need to be answered immediately. I've had to learn so much already, and the reality is that I am currently under constant care and scrutiny. My final radiation treatment is this coming Thursday, and I am grateful for that! It's been much easier than I anticipated!

    LOVE and HUGE APPRECIATION to all here, both those present and engaged, and those lovely women who came before.

    Deb - grateful and relaxed this morning. PNW no longer will have 117 degree heat!

     

  • cmb
    cmb Member Posts: 938 Member

    Thank you so much, Cindi!

    I'm grateful for the welcome. I was kind of wondering if in my brief time here, I was posting too much. I've used a Caring Bridge page since January, and am by nature and trade a writer and questioner. I ponder on things until I understand, which is a blessing and a curse. 

    I typically "clock" between 7k and 14K on my fitbit daily, and yes, it does help. I've walked 258 miles since April, when I started walking a virtual Camino de Santiago (the Norte route!). I've never walked the real Norte route, although I walked the 500-mile Frances route in 2015, and have walked twice more in Spain. 

    Today I will begin working out in an amazing gym near my cancer clinic in Portland, Oregon, and am scheduled for lap swims too, but need to call my radiology office to see if my "radiating" vag cuff is okay to be in a salt water pool! I have had "ouchy" feelings considering that, but during the covid year, I gained weight and stress.

    * * *

    When we are at our very most vulnerable and incapacitated, we must think with the most clarity. That's how I've found this cancer journey to be.

    * * *

    My questions don't need to be answered immediately. I've had to learn so much already, and the reality is that I am currently under constant care and scrutiny. My final radiation treatment is this coming Thursday, and I am grateful for that! It's been much easier than I anticipated!

    LOVE and HUGE APPRECIATION to all here, both those present and engaged, and those lovely women who came before.

    Deb - grateful and relaxed this morning. PNW no longer will have 117 degree heat!

     

    Welcome

    Deb,

    It's very natural that when women first join this board that they have lots of questions and we welcome that. Not all of us had the same cancer journey so we can't answer every question, but there is usually someone here who has had a similar experience. So ask away.

    The only information I received about my LVSI is what I posted above from my pathology report. I'm not sure what other information would be available now. My gynecological oncologist did tell me right after surgery that he took out a lot of nodes because some were enlarged (they all turned out to be negative for cancer). This explanation was not on my pathology report. While I still see him for regular exams I doubt he'd remember any more details so long after my surgery.

    My tumor was located in the lower part of the uterus but I don't remember any discussion making that more problematic, except that I was staged higher because of the cancer cells found in the left parametrium. I was already at a higher risk because of my stage and type of cancer. But I only had external pelvic radiation, not internal radiation.

    If you haven't found it already, you can click on a username under the member's profile picture to learn more about that member's cancer experience. Not everyone fills in this information but I encourage you to consider adding some information now while it's still fresh in your memory. It really helps others to have this information handy when we're replying to a post.

    It's good to hear that you've felt well enough to keep your activity level up these past few months. You'll feel even better once you're done with radiation.

  • MoeKay
    MoeKay Member Posts: 407 Member

    Thank you so much, Cindi!

    I'm grateful for the welcome. I was kind of wondering if in my brief time here, I was posting too much. I've used a Caring Bridge page since January, and am by nature and trade a writer and questioner. I ponder on things until I understand, which is a blessing and a curse. 

    I typically "clock" between 7k and 14K on my fitbit daily, and yes, it does help. I've walked 258 miles since April, when I started walking a virtual Camino de Santiago (the Norte route!). I've never walked the real Norte route, although I walked the 500-mile Frances route in 2015, and have walked twice more in Spain. 

    Today I will begin working out in an amazing gym near my cancer clinic in Portland, Oregon, and am scheduled for lap swims too, but need to call my radiology office to see if my "radiating" vag cuff is okay to be in a salt water pool! I have had "ouchy" feelings considering that, but during the covid year, I gained weight and stress.

    * * *

    When we are at our very most vulnerable and incapacitated, we must think with the most clarity. That's how I've found this cancer journey to be.

    * * *

    My questions don't need to be answered immediately. I've had to learn so much already, and the reality is that I am currently under constant care and scrutiny. My final radiation treatment is this coming Thursday, and I am grateful for that! It's been much easier than I anticipated!

    LOVE and HUGE APPRECIATION to all here, both those present and engaged, and those lovely women who came before.

    Deb - grateful and relaxed this morning. PNW no longer will have 117 degree heat!

     

    Glad you're checking with your radiation oncologist on the pool

    Hi Deb,

    First, let me say welcome to the group!!  Second, I'm very glad that you're checking with your radiation oncologist before venturing into the pool!  It was a hot summer in 1999.  I had just finished my brachytherapy.  My husband and I were celebrating the end of my treatment at a hotel, and I decided to take a swim in the indoor pool.  Unfortunately, I ended up with a nasty vaginal infection a very short time later.  I guess I should have checked with my rad-onc to find out whether she thought that was a good idea beforehand like you're doing!! 

    Good luck with finishing up with your final brachytherapy!  When I was treated, brachytherapy required a two-day inpatient stay in isolation in the hospital.  Things have certainly changed for the better on that front since then!

     

  • Harmanygroves
    Harmanygroves Member Posts: 476 Member
    cmb said:

    Welcome

    Deb,

    It's very natural that when women first join this board that they have lots of questions and we welcome that. Not all of us had the same cancer journey so we can't answer every question, but there is usually someone here who has had a similar experience. So ask away.

    The only information I received about my LVSI is what I posted above from my pathology report. I'm not sure what other information would be available now. My gynecological oncologist did tell me right after surgery that he took out a lot of nodes because some were enlarged (they all turned out to be negative for cancer). This explanation was not on my pathology report. While I still see him for regular exams I doubt he'd remember any more details so long after my surgery.

    My tumor was located in the lower part of the uterus but I don't remember any discussion making that more problematic, except that I was staged higher because of the cancer cells found in the left parametrium. I was already at a higher risk because of my stage and type of cancer. But I only had external pelvic radiation, not internal radiation.

    If you haven't found it already, you can click on a username under the member's profile picture to learn more about that member's cancer experience. Not everyone fills in this information but I encourage you to consider adding some information now while it's still fresh in your memory. It really helps others to have this information handy when we're replying to a post.

    It's good to hear that you've felt well enough to keep your activity level up these past few months. You'll feel even better once you're done with radiation.

    Grateful <3</b>
    CMB, I've read about nearly everyone in here by clicking on their name. I have written about myself already, so click me, baby!
    I have not shared all the details quite yet, but will later as time allows. 
    I have had to dig deep to learn, as my initial gyn oncologist was not forthcoming about the LVSI / 83% myometrial invasion / lower uterus involvement. He was not happy when I asked about these things, and instead, got angry.
    He said, "If I had my death date inside an envelope, do you think I'd want to know?" 
    In brief, it became all about him. 
    In short order, I found a new place to land, and have very happily done well with my new gyn oncologist, as well as my radiology oncologist. I can't wait to finish radiation! I'm also looking forward to being out of this emotional pain and physical discomfort.
    I've had a hard row to hoe (in farmer talk) with my uterus, which has never failed to disappoint. Endometriosis, ectopic pregnancies, and more. It's my Achilles Heel! ha! My uterus has always been unruly, but I quite miss it.
    I'm so grateful to be here, around women who truly understand. 
  • Harmanygroves
    Harmanygroves Member Posts: 476 Member
    MoeKay said:

    Glad you're checking with your radiation oncologist on the pool

    Hi Deb,

    First, let me say welcome to the group!!  Second, I'm very glad that you're checking with your radiation oncologist before venturing into the pool!  It was a hot summer in 1999.  I had just finished my brachytherapy.  My husband and I were celebrating the end of my treatment at a hotel, and I decided to take a swim in the indoor pool.  Unfortunately, I ended up with a nasty vaginal infection a very short time later.  I guess I should have checked with my rad-onc to find out whether she thought that was a good idea beforehand like you're doing!! 

    Good luck with finishing up with your final brachytherapy!  When I was treated, brachytherapy required a two-day inpatient stay in isolation in the hospital.  Things have certainly changed for the better on that front since then!

     

    MoeKay <3</b>
    Thanks so much for weighing in. I've had a rough morning, and cancelled everything at the pool and gym. I will check in later. Thank you!
  • MoeKay
    MoeKay Member Posts: 407 Member

    LVSI Present

    Hey, everyoneCool I'm new here, so haven't really told my story yet, but in a nutshell, I started getting a diagnosis in mid January with a late night e mail from my doctor that sounded a bit frantic. By mid February, I was in surgery --d and c, hysteroscopy, biopsies, polypectomy, etc., and following a diagnosis of endometrial adenocarcinoma (grade 1, thank God for that, right?), was scheduled for the big surgery.

    That's all a different story, but to get to the point, I had 83% myometrial invasion and LVSI present, so am now wrapping up my final brachytherapy session this coming Thursday. In the 1988 charts, I would have been Stage 1 C, but am 1 B owing to them changing how they stage those with high myometrial invasion together with 1 B. Grade 1, Stage 1 B with myometrial invasion 83% and LVSI present, with lower uterine tumor, if I'm remembering correctly. 

    I completely changed cancer teams owing to a lot of weirdness with oncological surgeon, and a complete reluctance on his part to answer my questions. Fortunately, I researched and read and read and researched, and was aware before my post op with him that my myometrial invasion and LVSI would be pointing to brachytherapy. I was able to warn my husband, who has not done well with all this. Well, he's been great, but he has watched me spend hours trying to get to the bottom of all the acronyms and bs answers from my doctor, and he's seen me suffer greatly.

    I am now very curious about my LVSI. Recently, my radiological oncologist shared nomograms with me that help me with specific data and percentages about my changes for local and distant recurrence. That helps me. 

    Here's the trouble for me: I keep feeling like I've missed something. I keep remembering questions or worries that haven't been addressed yet.

    --why is it that cancer and etc. in the lower part of the uterus is supposed to be problematic?

    --why didn't I find out where my LVSI was? I left that doctor, and now wonder if I can figure it out (of course, right?)

    I'm exhausted from this last six months. Surgery was March 28th, and I'm no longer feeling like my heart is jumping out of my chest. 

     

     

     

    Your LVSI & LUS Questions

    Hi Deb,

    My tumor also arose in the lower uterine segment (LUS), and I had extensive LVSI.  I also had a tumor that invaded approxmately 80% of my myometrium, but my tumor was a grade 2.  I was under the impression that LUS and LVSI were both poor prognostic factors, but in doing a quick search, it seems some more current studies have concluded that LUS is not a separate prognostic factor.  For example, a 2017 study concluded as follows:

    Conclusion: We found that LUS involvement was not an independent prognostic factor for poor survival, but it is associated with other poor prognostic factors such as deep myometrial invasion, uterine serosal involvement, lymphovascular space invasion, lymph node metastasis and higher FIGO grade.

    Here's the link:  https://pubmed.ncbi.nlm.nih.gov/28263506/

    Do you have a copy of your pathology report (PR)?  That might give you some additional information on your LVSI.  If not, I know I called the pathologist who handled my case and he spent a lot of time going over my pathology report and any questions I had.  My PR states specifically that my LVSI was "extensive."  Here's a recent study that discusses a proposed 3-tiered grading system for LVSI (no, focal, and substantial).   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6852322/.  I don't recall seeing any grading system when I was researching my cancer, back in the 1999 timeframe, but I suspect my "extensive" LVSI would correlate with "substantial" under the current grading system. 

     

     

  • Harmanygroves
    Harmanygroves Member Posts: 476 Member
    edited June 2021 #31
    MoeKay said:

    Your LVSI & LUS Questions

    Hi Deb,

    My tumor also arose in the lower uterine segment (LUS), and I had extensive LVSI.  I also had a tumor that invaded approxmately 80% of my myometrium, but my tumor was a grade 2.  I was under the impression that LUS and LVSI were both poor prognostic factors, but in doing a quick search, it seems some more current studies have concluded that LUS is not a separate prognostic factor.  For example, a 2017 study concluded as follows:

    Conclusion: We found that LUS involvement was not an independent prognostic factor for poor survival, but it is associated with other poor prognostic factors such as deep myometrial invasion, uterine serosal involvement, lymphovascular space invasion, lymph node metastasis and higher FIGO grade.

    Here's the link:  https://pubmed.ncbi.nlm.nih.gov/28263506/

    Do you have a copy of your pathology report (PR)?  That might give you some additional information on your LVSI.  If not, I know I called the pathologist who handled my case and he spent a lot of time going over my pathology report and any questions I had.  My PR states specifically that my LVSI was "extensive."  Here's a recent study that discusses a proposed 3-tiered grading system for LVSI (no, focal, and substantial).   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6852322/.  I don't recall seeing any grading system when I was researching my cancer, back in the 1999 timeframe, but I suspect my "extensive" LVSI would correlate with "substantial" under the current grading system. 

     

     

    Thank you!

    I have finished my alotted "cancer time" today. It's the only way I can stay sane! Tomorrow, I will let myself dig out the path report and review it again. Very grateful.

     

  • Tamlen
    Tamlen Member Posts: 343 Member
    edited July 2021 #32

    MoeKay <3</b>
    Thanks so much for weighing in. I've had a rough morning, and cancelled everything at the pool and gym. I will check in later. Thank you!

    LVSI

    Harmanygroves, do you feel your questions about LVSI have been answered now?

    I was initially staged at II and "suspicious for LVSI" that was poo-pooed by my original oncologist, who didn't agree with the pathologist about it. Turns out she was wrong. I was actually Stage IVB with mets in my lungs (and nowhere else) due to LVSI. Because of that experience I'm kind of a broken record on this forum about encouraging follow-up for anyone with possible LVSI. Most don't have happen what happened to me. But if a different oncologist hadn't immediately ordered a scan (something I'd been asking the original onc for months), I dread to think how advanced the lung mets would have gotten by the time the original onc decided to listen to me.

  • Harmanygroves
    Harmanygroves Member Posts: 476 Member
    Tamlen said:

    LVSI

    Harmanygroves, do you feel your questions about LVSI have been answered now?

    I was initially staged at II and "suspicious for LVSI" that was poo-pooed by my original oncologist, who didn't agree with the pathologist about it. Turns out she was wrong. I was actually Stage IVB with mets in my lungs (and nowhere else) due to LVSI. Because of that experience I'm kind of a broken record on this forum about encouraging follow-up for anyone with possible LVSI. Most don't have happen what happened to me. But if a different oncologist hadn't immediately ordered a scan (something I'd been asking the original onc for months), I dread to think how advanced the lung mets would have gotten by the time the original onc decided to listen to me.

    Tamlen <3 </b>
    Here's where I'm at, and thanks for checking in. I feel like I've gotten a "child's cartoon" of what LVSI is from my first Gyn Oncologist, and he was very nonchalant about a. 83% myometrial invasion and b. the LVSI.
    I, on the other hand, am all over this kind of stuff, and in part owing to his refusal to even talk with me about my concerns, completely changed oncology clinics, teams, doctors. No small endeavor, as you can guess---and others here probably know.
    I'm quite alright with changing a horse midstream if mine seems to be disappointing me, so I changed clinics.
    The LVSI sets me up--with the lymph system and vascular system involvement--to be at a greater risk for mets. I have figured that out. Because of the LVSI and 83%, I am not resting easy on my Stage 1 B. In fact, with AGUS leaking out of my cervix last December, I can't help but wonder how my cervix wasn't involved! 
    I have little faith in my first gyn oncologist, and a question I had for him was, "Do you feel that given the LVSI etc. I may have been a better candidate for open surgery, rather than DaVinci?" He of course was irritated at that question.
    I'm not yet done trying to figure things out, and fluctuate between wanting to chase it all down and feeling exhausted. As soon as I get through this stupid radiation illness, I will have a better brain for pulling up all my previous reports, including pathology, etc. 
     
    EVER so grateful for your support. Really, truly, deeply. 
  • Tamlen
    Tamlen Member Posts: 343 Member
    edited July 2021 #34

    Tamlen <3 </b>
    Here's where I'm at, and thanks for checking in. I feel like I've gotten a "child's cartoon" of what LVSI is from my first Gyn Oncologist, and he was very nonchalant about a. 83% myometrial invasion and b. the LVSI.

    I, on the other hand, am all over this kind of stuff, and in part owing to his refusal to even talk with me about my concerns, completely changed oncology clinics, teams, doctors. No small endeavor, as you can guess---and others here probably know.

    I'm quite alright with changing a horse midstream if mine seems to be disappointing me, so I changed clinics.

    The LVSI sets me up--with the lymph system and vascular system involvement--to be at a greater risk for mets. I have figured that out. Because of the LVSI and 83%, I am not resting easy on my Stage 1 B. In fact, with AGUS leaking out of my cervix last December, I can't help but wonder how my cervix wasn't involved! 

    I have little faith in my first gyn oncologist, and a question I had for him was, "Do you feel that given the LVSI etc. I may have been a better candidate for open surgery, rather than DaVinci?" He of course was irritated at that question.

    I'm not yet done trying to figure things out, and fluctuate between wanting to chase it all down and feeling exhausted. As soon as I get through this stupid radiation illness, I will have a better brain for pulling up all my previous reports, including pathology, etc. 

     

    EVER so grateful for your support. Really, truly, deeply. 

    Scan?

    Have you had a scan of any kind -- PET, CT?

    I switched clinics and oncs too. It was one of the very best decisions I made in all of this and hope it is the same for you.

  • Lyn70
    Lyn70 Member Posts: 214 Member
    edited July 2021 #35
    Welcome Harmanygroves!

    Look up my history and you will see I had deep myometrial invasion and extensive bilateral LVSI. My first post surgical consult indicated IIIA. I was told I would have 6 rounds of chemo to prevent met and likely 4 weeks radiation to prevent reoccurence. I was told the likely reoccurence would be in the vaginal cuff. I completed 6 rounds of chemo on 5/5/21 and will now start 5 1/2 weeks of radiation followed by 3 brachy placements over a 2 week period.

    I dissected my pathology report and researched the definition of each medical term on Google University. It was exhausting! I researched case studies and statistics on prognostic indicators like LVSI and myometrial invasion depth. I looked at 2&3 year reoccurence percentages based on stage and tumor size and 5 year survival percentage rates. My mind was reeling and my fears were mounting. I had to achieve sime sense of calm.

    I concluded that my treatment plan agreed with the protocol for IIIA and that I was confident in the plan. This site gave creedence to that confidence thru the stories and responses of fellow survivors. You will be seen and heard here by wise women. 

     

     

     

  • Harmanygroves
    Harmanygroves Member Posts: 476 Member
    Lyn70 said:

    Welcome Harmanygroves!

    Look up my history and you will see I had deep myometrial invasion and extensive bilateral LVSI. My first post surgical consult indicated IIIA. I was told I would have 6 rounds of chemo to prevent met and likely 4 weeks radiation to prevent reoccurence. I was told the likely reoccurence would be in the vaginal cuff. I completed 6 rounds of chemo on 5/5/21 and will now start 5 1/2 weeks of radiation followed by 3 brachy placements over a 2 week period.

    I dissected my pathology report and researched the definition of each medical term on Google University. It was exhausting! I researched case studies and statistics on prognostic indicators like LVSI and myometrial invasion depth. I looked at 2&3 year reoccurence percentages based on stage and tumor size and 5 year survival percentage rates. My mind was reeling and my fears were mounting. I had to achieve sime sense of calm.

    I concluded that my treatment plan agreed with the protocol for IIIA and that I was confident in the plan. This site gave creedence to that confidence thru the stories and responses of fellow survivors. You will be seen and heard here by wise women. 

     

     

     

    Hey Lyn70

    I am so grateful for your articulate and wise response. I just read through your history (again, to be honest). It gives me hope and relief that other women have the same issues as me. 

    I did not have the bilateral fallopian tube involvement, as you do. Your myometrial invasion is a bit higher than mine (we're both 'octogenerians' in the numbers with myometrial), but here you are, encouraging me.

    Something I absolutely relate with in what gives you hope is "absolute honesty" from doctors. I was not happy to change oncology clinics midstream. Who would be? It's exhausting, but it's similarly exhausting to try to EEK OUT "just the facts, ma'am" (that's all I wanted, was all the facts) when dealing with an "old school" oncologist who metes out information in little baby bites that "he" thinks you can "handle." BS to that. Moved on faster than a greased pig at the County Fair!

    Ha, ha! I'm in rare form this morning.

    Lyn70 - I've spent days, nights, sleepless nights, learning about this cancer. I have burned my eyes out on it, and I feel like since my THBSO and changing doctors and going to a new place and getting radiation has at this point gotten me to a point at which I have to slow the boat down. I've gotten a lot done. I've gotten a lot done to me. 

    I am now sufficiently educated so that I realize--I've learned-- I must monitor closely. I am no longer at the point at which I feel like "secrets and information" are being withheld so I don't panic. That withholding of information makes me crazy. I would much rather know everything, even if it's hard, so I can figure out how crucial it is for me to, say, walk six miles per day. Stop dairy. Go vegetarian. Eat salmon! Label jewelery! A little dark humor there. Hope you get that.

    * * * 

    I am currently catching up on stacks of bills, unanswered correspondence, the most disgusting spider and cobwebs in our farmhouse. I am also no longer pooping my brains out, so am in high celebratory mode today! I am so happy. Thank you for everything. 

    And yes, I do definitely feel HEARD and RESPECTED in this space.

    THANK YOU all!

    And I did have a CT scan prior my first exploratory D and C / Hysteroscopy / polypectomy, and nothing appeared amiss with my lymph nodes. When my sentinels were dissected after the big surgery, NED in them.

    I also had a mammogram recently, and they "filmed" further down my armpits and looked at those nodes, NED.

    Colonoscopy showed NED.

    Recent biopsy of a mole showed NED>

     

  • Lyn70
    Lyn70 Member Posts: 214 Member

    Hey, Harmany & All Ladies

    Happy New Year. Going into my Gyn Oncologist for my three month check up, Friday 1/7/22. Feels odd to see that 22 behind the forward slash.

    I am feeling well but I am hoping a CT or PET is scheduled after this visit. I want to be proactive. I asked about a scan in Oct and Doc said 6 months so here we are. I must admit to scan anxiety and it isn't even scheduled yet! Typical me.

    I am in the Cancer Survivorship program at the Oncologist office. I had my first visit and will have my second of three in March. I finished pelvic floor therapy and then Revital, balance and strength therapy for after cancer treatment.

    Just wanted to check in and check to see how everyone was in this New Year. I know we lost one dear lady recently. I remember her lovely face on her posts.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,060 Member

    Lyn, so good to hear from you! I would love to hear more about the Cancer Survivorship program you are in, I don't know how many responses it would get if you started a new thread with that, but I do think there are wonderful programs out there that others might be interested in if they knew what they are about.

  • Ribbons
    Ribbons Member Posts: 141 Member

    I thought I had commented on your question but apparently I did not. I had very slight LVSI on my report, 22 lymph glands removed and all clear. My Dr said yes it was on the report but was not really at the invasive stage so since everything else was clear, not to worry. I’m so sad that your first Dr was so bad. I go to the same clinic that you started with but a different Dr and I love her! And I like that clinic, since cancer is all they do there, I feel like I get more focused attention. I’m happy that you were able to transfer to a better place for you.