Endometrial Cancer from Tamoxifen, anyone else?

Options

just diagnosed via d&c , waiting to see gyno-oncologist - hopefully will have an appt early next week, finally told to stop tamoxifen.  anyone else further along in this bc detour?

«1

Comments

  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited January 2014

    Hi Jelson, sorry you're having this problem.  Tamoxifen's woes seem to keep piling up.  Glad they finally took you off of it.

    I don't have endometrial cancer but I'm nervous about it.  Could I ask you what your symptoms were?  About 3 weeks ago, I woke up one morning and when I stood up I had a flood of clear, odorless fluid running down my legs - like when my water broke (no, not pregnant).  I've also been having difficulty urinating but I was blaming that on Tamoxifen - I don't know why.  So I went to my regular gyn who did a transvaginal ultrasound and said everything looked alright and to go see a urologist about my hesitant bladder.  1/2 cup of clear fluid doesn't just come pouring out of your vagina for no reason so I can't just let it go.

  • Jelson
    Jelson Member Posts: 1,535
    edited January 2014

    first off, I am post-menopause and was on tamoxifen because of my DCIS diagnosis. One of the possible side-effects of tamoxifen is more moisture, which I frankly welcomed!! - but it never cascaded down my legs!!! looking back, I realize that something might have been going on in June when I started to see small brown stains in my panties. No smell, not itchy - always came out in the wash - I assumed another tamoxifen discharge - then in August- September - I noticed pink or red and based on all common warnings to go to doctor if there is "spotting/bleeding" post- menopause - that is what I did. Had a pelvic exam which verified the origin of the blood, I proceeded to have a transvaginal ultrasound which showed thickening and a polyp and then an d&c, which from my reading of the pathology report (have spoken with the gyno by phone, but actually face to face appt is Friday) indicates the cancer was in the polyp. 

    I am not ready to give a history of my pathetic attempts to avoid just the situation I find myself in today - but if it is any comfort to you, over the course of my 4 years and 5 months on tamoxifen - I experienced thickening enough to trigger 2 d&cs which showed no cancer.  I (ever optimistic) interpreted that to mean - it caused thickening and not cancer in me and therefore didn't question that my gyno didn't schedule me for a regular ultrasound for like 18 months - and perhaps this gap was the difference between pre-cancer cells and cancer cells.  

    At this point, I know I will have a hysterectomy - which I would have
    had if pre-cancerous cells had been found earlier or if my gyno had
    said something to the effect of your lining keeps thickening from the
    tamoxifen - if it is reacting so strongly - it very well might develop
    into cancer - lets do a preventive hysterectomy, but he did not advise
    that (of course it is going to be interesting to hear his version of
    events)!!! so now I am hoping that the hysterectomy will do the trick -
    best outcome will be that I will not need lymph nodes removed or follow
    up radiation/chemo.

    from my experience, ultrasounds show expected or unusual thickening and things like polyps, so the fact that yours looked ok is great.  Ask for a copy of the pathology report and see for yourself. I would say go to the urologist and if you are still uncomfortable see if your gynocologist would do an endometrial biopsy or d&c or explain why not?  but here is something else - I searched in history for other women on bco who have been diagnosed with endometrial cancer and didn't have much luck - most mention has been concern, rather than diagnosis. 

  • badger
    badger Member Posts: 34,614
    edited January 2014

    ((Jelson)) no advice just a hug.  ♥

  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2014

    Jelson - I am on Tamoxifen too but just barely 2 years. Haven't experienced the symptoms you are describing but have to admit it scares me. You are almost 5 years into it and the cancer shows up now. I do agree with you there is some medical negligence involved too. I think this disease has forced us to be more not proactive because we already are, but insistent that our doctors take the next step be it ultrasound or scan or whatever. I recently had this burning on the back of one of my calves; had been going on for about a week. I have been working out on the treadmill and I do walk hard and fast. Anyway the burning continued to the point I called my Oncologist. As you know Tamoxifen can cause clots too and I had one when I was 16. I am much older than that now and have had 2 children so my Oncologist thought I would be okay taking it. Anyway when I called I asked the nurse if I should go to the ER...she said if I would feel better going than do so...seriously? The other nurse said the ultrasound would be the next day and there was no reason to panic by going to the ER. The ultrasound came out fine. The nurse thought it could be a clot or DVT...talk about your lesser of the two evils. Point of this is we have to be pushy when it comes to investigating symptoms we are having. We are not doctors - they are so we yield to their expertise. I don't want my doctor to overreact but there are a lot of side effects to Tamoxifen so how are we supposed to know when it is a big deal and when it isn't. Good luck with your doctor. What is the treatment for that kind of cancer? Diane

    \

  • Jelson
    Jelson Member Posts: 1,535
    edited January 2014

    Thanks Badger! Diane, I am trying to learn about endometrial cancer -but  can't find a resource/peer discussion set up like we have here at BCO - it is a testament not only to Marisa's good work but also to the vast numbers of breast cancer patients vs much smaller number of endometrial cancer patients. As far as I have learned so far, the first order of business is hysterectomy - which can be more or less extensive - however - sometimes if the patient is still hoping to add to her family - there are hormonal treatments and maybe even some watchful waiting?? otherwise there is hysterectomy and staging based on lymph nodes and maybe radiation (internal or external) and maybe chemo. There are laproscopic hysterectomies and some done with da vinci??? robots??? but from what I have read, if they know there is cancer, it is usually abdominal with the incision going up and down - making it easier to look around??

    anyway, I am handing my gyno a copy of this image at my appointment on Friday. It sums up my feelings perfectly.

    image

  • Hipline
    Hipline Member Posts: 195
    edited January 2014

    I was on Tamoxifen almost 3 years (about to move onto Femara now) and during that time I had ovarian cysts and thickening of the uterine lining.  My gyno was nervous and we did numerous biopsies and ultra sounds every few months.  The biopsies were all negative but I was worried that one day they wouldn't be.  Then, I heard an oncologist speak about a small trial she did at her clinic with women with ovarian cancer who were taking fermented wheat germ extract.  All the patients had their tumors shrink.  I did a little research and decided to try it to see if it would help me.  It is also suppose to increase the efficacy of tamoxifen.  After about 6 months, the cysts were gone and my lining was back to normal.  I don't know if it was me wanting it to work so bad that it worked or if it's really a legitimate alternative treatment.  But I do think it's worth trying to keep your body parts and this is a simple (but foul tasting) treatment. Just wanted to share my story.  Thanks!

  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited January 2014

    Jelson - "You had one job!"  Exactly!  We're not doctors - after two D&Cs I would not have expected this one to be any different, either.  

    I've found resources on uterine cancer to be scarce, too.  It really does make me appreciate what we have here.  

    I did find this interesting link, which has other informative links too: http://www.wisegeek.com/what-are-symptoms-of-uter...

    Diane - I agree, we have to be pushy even though we're certainly not the experts.  I see my MO in January and I'll feel more comfortable with her recommendations.  My son thought it was great news when he heard what my gyn said, but I said no, something happened that never happens. There must be a reason.

    Hipline - interesting story about the fermented wheat germ extract.  One to add to my collection.

  • lekker
    lekker Member Posts: 594
    edited January 2014

    Jelson - the hystersisters website has a section for women with gyn cancers. Not all surgeons can do laparoscopic staging surgeries but some can. My friend had it done at Stanford for ovarian cancer. My gyn onc was able to do my prophy hyst/ooph with a lap and was able to take out each organ whole and have a good look around. I knew there was a chance it could convert to an open surgery, but I at least wanted to try for the lap.  I'm sorry you're having to deal with this and I hope your treatments are bearable and very effective. 

  • Marple
    Marple Member Posts: 19,143
    edited January 2014

    Kira who used to frequent the lymphedema boards had some issues with tamox.  You can use the 'search' option to find her posts.

  • Jelson
    Jelson Member Posts: 1,535
    edited January 2014

    Lekker - after a laproscopy for infertility 30 years ago! the surgeon sat on my bed and drew a picture of a uterus/fallopian tube set up and said, this is normal, she then took the side of her pencil point and from top to bottom, went back and forth covering the drawing and then said, and this is you. Apparently I am filled with scar tissue, from what,  I don't know, I never had any pain - my current gyno says it might have been caused by endometriosis. Subsequently, had surgery to open/free up the ends of my fallopian tubes - to no avail - but there was concern at the time that my urethra? ureter? was nicked - though it turned out not to be.  Consequently, I don't think I am a candidate for less invasive/easier to recover from hysterectomies, I think they are going to have a hard time freeing up my uterus/ovaries for removal simply because I think they are stuck to everything else. so - that is a battle not worth fighting - I am, however, going to request that no lymph nodes be removed unless there is clear evidence or reason to believe  that the cancer has spread beyond the uterus. I would rather have radiation - if they give me that as an alternative. And I thank Marple for directing me to Kira's posts because they contain references to studies which question the value of lymph node removal in early stage endometrial cancer. 

  • lekker
    lekker Member Posts: 594
    edited January 2014

    I'm sorry that I suggested things that obviously won't work for you.  Do they think they can at least clean up some of the scar tissue when they open you up or does it not bother you anymore?  Either way, I hope you have a good recovery!

  • Jelson
    Jelson Member Posts: 1,535
    edited January 2014

    Lekker -   Most of the info I am finding on hysterectomy is about the new procedures so no apology necessary. I am not going to fight for that - or for my cervix! I didn't even know that was often removed.  I am going to fight for my lymph nodes!!! Since I was in my twenties, one foot (obviously) and that leg (a little) - are swollen - and the swelling in the foot changes with the shoes I wear. Thought it was because I dropped a crate of milk bottles on my foot - but who knows. Many years later - my mom casually mentioned that her cousin Sylvia had one leg bigger than the other! WTF??? anyway - that makes me afraid I might be prone to lymphedema in the legs. To answer your question,  my abdominal  scar tissue has never given me pain! I never had menstrual cramps! I have not had any painful side effects from the tamoxifen - am not in any pain now!

  • lekker
    lekker Member Posts: 594
    edited January 2014

    Glad to hear that you have no pain now and I hope that continues after your surgery!  Please come back and let us know how it goes for you and what the pathology report says.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited January 2014

    Jelson,

    I am so, so sorry to hear your biopsy came back positive for endometrial cancer.  

    I have not been diagnosed with it but just had a d&c 9 days ago that found a "huge" endometrial polyp which was benign.  I have been on Tamoxifen for 1.5 years now and have had bleeding on and off for the last 6 months.  Had a negative endometrial biopsy last summer, but since my bleeding recurred my gyn felt I should have a d&c.  I am so glad she did.

    I have decided to stop Tamoxifen because I believe it fueled the growth of this polyp.  I don't want more to grow and then find out one has turned cancerous.  There is a study that was done that showed if you have endometrial polyps to begin with before going on Tamoxifen that your risk of developing endo cancer is higher (18x) than those on Tamoxifen who had a clear uterus to start with.  If you have read kira's posts you will see that she had endometrial polyps at baseline that grew to huge polyps on Tamoxifen.  And eventually after enough d&c's they found endometrial hyperplasia with atypia, and she had a hysterectomy.  She's the one who put me on to the study that showed there are high risk and low risk groups of postmenopausal patients who are on Tamoxifen.  Here's the link to a report by the ACOG:

    http://www.acog.org/Resources%20And%20Publications/Committee%20Opinions/Committee%20on%20Gynecologic%20Practice/Tamoxifen%20and%20Uterine%20Cancer.aspx

    Specifically, it says:

    Emerging evidence suggests the presence of high- and low-risk groups for development of atypical hyperplasias with tamoxifen treatment in postmenopausal women based on the presence or absence of benign endometrial polyps before therapy. Thus there may be a role for pretreatment screening of postmenopausal women with transvaginal ultrasonography, and sonohysterography when needed, or office hysteroscopy before initiation of tamoxifen therapy.

    All of this is not helpful to you now, but maybe it will be to others who are reading this and are concerned about symptoms.  I'm stopping Tamoxifen, will have my hormone panels repeated, and hopefully will be able to start an AI.  

    My thread is here if you are interested:  http://community.breastcancer.org/topic_post?forum_id=78&id=805443&page=1

    Wishing you a smooth surgery and quick recovery - when are you scheduled?  I too so hope you do not need lymph nodes removed.  That would be my #1 concern as well. 

  • Jelson
    Jelson Member Posts: 1,535
    edited January 2014

    Dancetrancer- thank you for the links and article. The article very much conforms to the conversation I had with my gynocologist on Friday -  at the outset of my time on tamoxifen,  he did several ultrasounds - resulting in two d&cs due to thickening with a polyp found in the second d&c - but  I had no polyps at the outset and the results of the two d&cs were benign - so what followed was simply normal gyno care - interrupted by my reporting spotting - which triggered an ultrasound followed by a d&c. He said that I actually didn't have thickening this time - it was all polyps, one of which had cancer cells, the rest hyperplasia? he said there was a good chance that he removed it all and that the cancer cells had not even reached the endometrial wall.  I asked all the questions I possibly could think of. He reassured me that the gyno-oncology group I have been referred to is very up to date regarding lymph nodes - and while I may have been reading that normal protocol is to remove and test many - this group is not doing that any longer unless it looks like the cancer is close to breaching the wall.  I will still bring copies of the articles Kira shared to my Wednesday appt with the surgeon. 
    So, I am feeling much better about all of this.  Just hope that the surgery will be scheduled ASAP!!!!!

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited January 2014

    Glad to hear he thinks there is a good chance the cancer was contained in the polyp.  Thinking of you for your upcoming appt - keep us posted! 

  • Jelson
    Jelson Member Posts: 1,535
    edited January 2014

    Had my appt with the surgeon, am scheduled for hysterectomy Jan 21. wish it was sooner but oh well. Told him I didn't want lymph nodes removed, we will see. Won't find out results until follow-up appt, but I will know that problems were encountered if instead of a few little incisions here and there, I have, in addition, a big long one from my belly button down! The recuperation didn't sound too bad really limited first two weeks but then - I will be limited to lifting 20 lbs for a month!

     Most disturbing part of the visit??? I measure 3 inches shorter than I have at other doctor's offices, I made them measure me twice. This is a very big deal, the difference between 5ft and barely????4ft 9inches!!!!! I told the nurse that this was worse than endometrial cancer, she looked shocked but as I told my husband, I can have a hysterectomy for endometrial cancer, but I am never going to get back those 3 inches. 

    By coincidence, my regular medical oncologist visit was scheduled right after the surgeon's visit. He was very distressed about the tamoxifen induced endometrial cancer - but said I had had a good run (4 years 4 months) and he will not recommend going back on it after the hysterectomy. I asked him about the endometrial cancer really only being a problem for post menopausal women and he agreed, I asked if the risk figures commonly discussed- like the 1% risk are for all women taking tamoxifen(the majority of whom are premenopausal?)  or whether they are broken down by pre-post menopause. He said the figures are for all women - well duh!!!!

  • Jelson
    Jelson Member Posts: 1,535
    edited January 2014

    3 good things in advance of my surgery - :

    1. I measured 5 ft at my primary doctor's office. I subsequently told the hospital nurse in my pre-op telephone interview about the discrepancy. She said that getting the BMI wrong would not be life-threatening but the loss of 3 inches did put me into a different category - obese? morbidly obese? fat shaming?? She made a note that I should be measured again.

    2. I checked my lumpectomy biopsy pathology report - 100% ER+ confirming that my decision to take the tamoxifen was a logical one which I would probably make again. 

    3. Went to the grocery store mainly to take advantage of bargains/coupons and realized that I had forgotten my wallet with the cash/credit cards. Thank heavens it was a slack period!!!  I had my stuff on the belt but the cashier hadn't started my order when I realized the problem. I explained to the woman behind me that I might have to bail out - putting my stuff back in my cart. She said don't worry. I then realized that I did have my check book but not my driver's license or grocery store card (which I use for exciting exclusive bargains!?) The cashier was very nice and processed my order then asked for my phone number but it didn't show up in the system - we tried this a few times. The woman behind me said she would help, she offered to pay for my groceries, when I told her no way, she then offered to take my check and pay for my order with hers- she thought I looked trustworthy. In the meantime, the cashier called over the supervisor who took me to another register where we tried again, she then did some research and discovered that I was in their system but not for check cashing.  She took my check with no proof of identity only saying that I had to promise to go to customer service and show them my driver's license when I come in next. Anyway I gave the supervisor a big hug, ran back to the original register and gave the cashier a hug and of course an big hug to the lovely customer who was willing to help out. When I got home I called the store and spoke with the manager about how I appreciated the kindness shown by the supervisor and cashier - I even remembered their names.  On the bad side, I am probably losing my mind and should not be out and about, on the good side, aren't people nice?  In this case Women helping Women. made me feel good.

  • Sydneyluv
    Sydneyluv Member Posts: 26
    edited January 2014

    I'm not on Tamoxifen (I'm on arimidex) but I just had a transvaginal ultrasound instigated by very slight vaginal bleeding. Apparently I do have a thickened uterine lining and some kind of polyp and will need a D and C type of follow up.  So now it's another test and wait.  I'm not terribly worried but I'm not happy either having just gone through my breast cancer treatment last summer.  I logged in mostly to express sorrow about your diagnosis, Jelson. And I wanted to express appreciation for this website, like others have stated.  I too did quite a bit of google searching about endometrial cancer and not much came up. This made me really appreciate BC.org.  Great website.  Thank you so much.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2014

    The lymphnode issue......Jelson, has your surgeon agreed to leave them alone?

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited January 2014

    Jelson that's a great story about the goodness of people, and in particular of women helping women.  Love it! 

  • Jelson
    Jelson Member Posts: 1,535
    edited January 2014

    Coraleliz - Seriously I was so blind-sided by being told I was 4'9" that I wasn't as focused as I had meant to be at the visit with the surgeon. The impression I got was that he still intends to take lymph nodes. This past Thursday I requested a phone call prior to surgery on Tuesday - but haven't heard from him - yet.  The way I want it to proceed would be hysterectomy - during the procedure, uterus etc sent to pathology, if there the cancer is not in the uterine wall - or has not breached the uterine wall then no lymph removal,if it has, then ok on the least amount of lymph removal necessary - if post surgery pathology shows cancer more advanced than pathology during surgery showed - then I am prepared for more surgery.  Also, I freaked when he said he would not touch the ligaments (for the purpose of  preventing future prolapse) because I might need radiation. Well that floored me because I don't want radiation. I was a totally compliant breast cancer patient. Accepted all recommendations for lumpectomy, radiation, tamoxifen. This is different- I feel because of the location - so much else going on in the pelvic area - makes for more quality of life destroying side -effects - bowel/bladder issues. I understood where he was coming from, but from where I was at, I hadn't wrapped my head around the possibility that radiation would need to be discussed because I (wanted to ) believe that this has been caught so early!!! His even mentioning the possibility that I might need radiation was actually shattering to me.  Which is why I am so delighted that my three good things actually restored me at least part way to my usual jolly-self.

  • Jelson
    Jelson Member Posts: 1,535
    edited January 2014

    had surgery Tuesday the 21st. When I signed in they asked my height and weight and I said 5ft.  they were able to do the robotic/laproscopic so I only stayed over at the hospital one night - with a fantastic roommate with whom I chatted all night. only problems were I almost fainted when they were putting in the iv, so they put the head of the stretcher down and a wet cloth on my head, and simultaneously my daughter who was holding my hand and singing "you are my sunshine" apparently we share the same go to song in moments of distress,  almost passed out so they put her in a chair and then on a stretcher. the bonus was that then they allowed my husband, son in law and son into the cubicle. I ended up getting some lymph nodes removed - because the surgeon explained that I was not necessarily classifiable as  "early stage" which I had been counting on and which I had been reading that lymph node removal provided no survival benefits. because I had grade 2 cancer cells. I wasn't going to argue how that doesn't matter (at least with bc). He said after that based on the initial pathology - there was a lot of cancer cells....... Oh and then eventhough I did not have lymphnodes removed for the bc, I still don't allow anything done on my left arm. so in the middle of the night I had bloods drawn and afterwards someone came flying down from the labs asking if I was a diabetic, when I said no, he asked where the bloods were drawn from - of course the right arm which had the iv apparently pumping sugar water. my blood glucose had registered over a 1000 and had thrown everything else off. so I allowed them to do a pinprick on my left - which registered 136 and they then flushed my lines and redrew the blood on the right side. I really appreciated their respecting my request eventhough they probably thought I was mad. So I am home, injecting myself with Lovenex  to prevent blood clots and hoping to fart to relieve pain in my shoulder from the air they pumped into my belly during surgery.  I think I can avoid radiation if the cancer has not gone more than 50% through the endometrial wall. I will know more next week.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited January 2014

    Hugs to you, wishing you a fast recovery and good news on the pathology.  

  • Jelson
    Jelson Member Posts: 1,535
    edited January 2014

    the surgeon said he would call today or tomorrow. I have been feeling very low - I have been insanely optimistic all along, assuming thickening was just thickening, then what was found was just hyperdisplasia (precancer) or that it was early stage and I had seemingly been disappointed. I wanted to be prepared for the worst so the surgeon wouldn't be no sorry, you really need radiation/chemo and you know you think you might have asthma - well sorry to be the one to break it to you ...... So I decided to mail some letters at the PO which is across from the hospital - I strolled on over and just as I had remembered, the medical records office was right there. I sweetly asked for my records (and as a cover, going back to Nov for my mammo through the day after surgery) handed in my drivers license and. waited a bit and was provided with a small stack. I asked if recent pathology was in there and the clerk checked and said sure. Poured through everything, most of the paperwork had to do with the contaminated blood test but then I found the surgical report and pathology report. As the surgeon had indicated my tumor was FIGO grade 2 - which he interpreted as giving him carte blanche to yank lymph nodes - which he appeared to have done - 2 of this kind, one of that kind, I haven't actually counted them all up yet. But the GOOD news is that for AJCC pathological staging? I was pegged at pT1a pNO  which, ignoring the "p"s as far as I could equate, according to the ACS is

    Stage IA (T1a, N0, M0): In this earliest form of stage I,
    the cancer is in the endometrium (inner lining of the uterus) and may
    have grown from the endometrium less than halfway through the underlying
    muscle layer of the uterus (the myometrium). It has not spread to lymph
    nodes or distant sites.

    the path report seems to indicate that the tumor had not spread to the myometrium at all. 

    I haven't had this, which I am interpreting as good news, confirmed by the surgeon yet. But it certainly is putting me in a happy place for the time being.

  • Jelson
    Jelson Member Posts: 1,535
    edited February 2014

    Today, my first follow-up appt at which I would have presumably learned for the first time the results of my surgery on 1/21 was canceled due to a snow storm. I told the person who called that I insist that the doctor call me TODAY. He did!! Without my revealing that I already knew the path/surgical results, he confirmed that it was early stage and no invasion - the great news is that no further treatment is recommended - I had assumed that at least a touch of radiation would be suggested and that I would have had to fight that. ALSO, the follow-up will be just visual, no cat scans. Yippee! He took 7 lymph nodes BECAUSE the tumor was grade 2 - I have made peace with that. 

    I am thinking about posting on the DCIS board something about questions to ask your MO when you are post-menopause and  tamoxifen is recommended. My research into tamoxifen had previously been from the breast cancer patient point of view. Reading the endometrial cancer literature gives a fuller picture of the risks and early warning signs. But  I am in no way warning women off of tamoxifen - my DCIS was 100% ER+ and I do not regret taking it - I just wish I had been more fully informed.

  • lekker
    lekker Member Posts: 594
    edited February 2014

    I'm so glad the surgeon didn't make you wait to come in to confirm the good news and that he doesn't feel further treatment is needed.  Was he able to tell you anything about what the lymph node removal could mean for your future?  I know many breast surgeons don't know much about arm/trunk/breast lymphedema and many patients are never told about risks and symptoms to watch for, but I'm hoping your surgeon was more proactive. 

  • Jelson
    Jelson Member Posts: 1,535
    edited February 2014

    I looked around at the Memorial Sloan Kettering, Dana Farber and MD Anderson websites to see what they were doing in terms of surgery/lymph removal. It seems that even at these cancer centers use of the Da Vinci robot for endometrial cancer is rather "cutting edge" - so whoopee for me. I  think it was on the MSK website that sentinal node biopsies were being explored. The literature seems to suggest that removal of lymph nodes is not necessary for early stage and sometimes grade 1 was specifically mentioned and that is what the surgeon kept going back to, both before the surgery and on the phone call mine was grade 2. What is interesting is that tumor size doesn't seem to come into play much. Mine was 2.2 cm - which seems big to me eventhough it hadn't penetrated anything.  I also read that some believe that the endometrial cancers  progress through hyperplasia and then cancer grades 1 then 2 then 3.  I haven't heard that with breast cancer, have you? Anyway, the surgeon said he wasn't going to take the lymph nodes that could cause my legs to swell up. He seems to dismiss the possibility of groin lymphedema from what he planned to take. He is relatively young - I am left with the impression that the gyno oncologists are way further behind the breast surgeons in acknowledging lymphedema. A few years ago I attended a conference at which a lymphedema therapist spoke and heard for the first time that lymphedema could occur in places other than the arm and trunk and be caused by surgery/accidents not necessarily BC related. I am going to track her down to learn about my risks, what the symptoms are that I should look for and what preventive measures I can take. I read Bathsheba's Breast last year based on recommendations on BCO. paart was a fascinating history of the advances in breast and lymph node conserving surgery that came at the insistence of high profile women patients and how far behind their European counterparts the US breast surgeons were in the 20th century. 

  • Jelson
    Jelson Member Posts: 1,535
    edited June 2014

    update on endometrial cancer - my excellent but apparently lymph node crazed surgeon moved to Florida and  my first 3 month check up was with the head of the practice. I  mentioned to him about my only concern was the loss of 7 lymph nodes and that soon there would be sentinal node biopsies for endometrial cancer, he looked at my chart and said, grade 1 or 2? he wouldn't have taken any lymph nodes at all!!!  And somehow for some reason, this made me feel better.  He also said I should consider myself cured!  and my next appt will be in 6 months. I asked if he prescribes anti-hormonals for endometrial cancers which are fueled by estrogen. I pointed to my belly and said it is an estrogen factory. He suggested Evista but it was like he had never been asked the question before. I will of course talk this over with the medical oncologist who I see at the end of the month.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2014

    Thanks for the update Jelson, glad you like the new surgeon and that his comments about the lymph nodes made you feel better.  But most of all, so happy for you to be doing well and that your doc gave you such a great prognosis.  Yay!!!!!!!

Categories