tamoxifin and endometrial cancer

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Dianeinil
Dianeinil Member Posts: 39

I was diagnosed in Nov 2004 with stage 2 estrogen positive BC. I did the chemo radiation and 5 years of tamoxifin ending August 2010. Dec of 2010 I had my pap. My Gyno suggested biopsy due to tamoxifin use. No symptoms but thought it was a good idea. Biopsy came back cancer ! Not one sign of it ! Three weeks ago I had total hysterectomy laproscopic ! Am doing great. My cancer was stage one grade one ! No further treatment. I wanted to tell this story so all you tamoxifin users realize the potential of getting this cancer is way higher then we are told ! Its an easy fix and caught early a 99% chance of no reoccurance . Be proactive don't wait for symptoms ~ It could save your life it did mine !!!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Diane, Next week, I'm having my second D&C, hysteroscopy since I started tamoxifen 2.5 years ago, and your post made me less reluctant to go through with it--I've been dragging my heels, because I don't want any more surgery, and I think the odds are slim that it's malignant. But my gyn is very thorough and did the biopsy--which was benign but showed polyps, which turned out to be quite large.

    Thanks for the heads up.

    Kira

  • SHAZBERNJESS
    SHAZBERNJESS Member Posts: 13
    edited February 2011

    I finished tamoxifen in sep 2010 i am haveing a hysteroscopy on march 8,the consultant said she feels the thickened endometrium of 17 has been caused by the tamoxifen,but to be certain i am haveing this done,i am worrid it could be cancer,not sure how i will take,i thought getting to 5 years i could put this behind me,but as my mother and her sister both had breast cancer and it came back i am thinking this is going to happen to me,i am trying not to think that way but sometimes it just gets to me,i will just have to wait and see what the 8 march offers me.

  • Aggiecat52
    Aggiecat52 Member Posts: 55
    edited April 2011

    I have been visiting these boards for a long time but only registered recently. I'm just approaching end of 2.5 years of Tamoxifen and did not have pelvic u/s until Mar 16. Results show thickening of uterus wall and now I need to have a biopsy. Had a major meltdown receiving this news but did feel better after reading this and related postings. GP did not tell me much so I assumed if they didn't think it was cancer why the biopsy? I don't have any symptoms either but have my fingers crossed that biopsy will be negative. If not then hopefully it's caught early as in your case and will be treatable. No appointment yet but will let you know when I find out more.

  • mymountain
    mymountain Member Posts: 184
    edited April 2011

    I've had three endo bx and numerous US due to tamoxifen induced changes, after being on T for 

    2 1/2 years.  I finally had a total hyster a few weeks ago, and the path was neg, although it was an unknown going in.  According to my gyn/onc the risk of tamox induced endometrial cancer si slim, but if you have increasing endometrial stripe (thickness), and/or growing ovarian cystsyou pretty much have no choice but to keep getting ultrasounded and biopsied every few months.

    Like Dianeinil said, it would most likely be folund early stage and cured with a hyst, but who wants to hear those words again? 

  • MissTW
    MissTW Member Posts: 98
    edited April 2011

    Thank you for posting this. You may have saved many lives!

  • vivre
    vivre Member Posts: 2,167
    edited April 2011

    Just think how many lives we would save if they would stop pushing tamoxifen. This drug causes cancer. How it the world was it ever approved? Indole 3 carbonol/DIM does the exact same thing as tamoxifen. It inhibits cancer cells from occupying hormone receptor sites. But of course, there is no money to be made from a compound that comes from cuciferous vegetables so the truth will not be told. But there is a lot of information about this out there. Google it.

  • FionaF
    FionaF Member Posts: 10
    edited April 2011

    Hi All,

    Thank you for posting your experiences, Im about to go through my second D&C and polyp removal this year!  Ive been on tamox for 11/2 years after Stage 3 breast cancer.

    Im really struggling with this, Im petrified to have more surgery (I always seem to be prone to complications/infections) and Im just MAD, and sick of dealing with issues and always having something found!

    My first D&C was done in the office as the polyp had protruded out of my cervix....can someone tell me what it's like to have this in the operating room?  Were you sore afterwards?

    Thanks so much, I really appreciate everyone's candidness and I wish everyone the absolute best - no more side effects, just happy less sore, less aggravating lives :)

  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited April 2011

    I am scheduled tomorrow morning for a D&C for endometrial thickening found on a routine trans-vaginal U/S. 

    Would love to hear from others as to what the recovery was like and also, from others that had the thickening, what did it turn out to be?  What was your follow-up like.  I too am TIRED of this and, if this is what I have to look forward to every year, it can all go!  

      

  • xtine
    xtine Member Posts: 131
    edited April 2011

    I'm 4 months in, and just had my first regular OB check-up. I asked if he would recommend regular ultrasounds due to Tamoxifen, and he said that he would not as he would expect to see some thickening in any case, and the thickening by itself doesn't mean anything. He did stress that I should raise any issues/changes with him ASAP so that he could do a biopsy or ultrasound - i.e. prolonged or heavy bleeding, extra pain, etc.

    I find the original post in this thread helpful and valuable... that you could have uterine cancer without symptoms. I think I might ask for a biopsy after some time on Tamoxifen, to be safe. I feel I am probably at somewhat higher risk due to a history of polyps and a fibroid in the past. But 4 months, I'm not worried. In any case, I'm glad you found it early, and don't require further treatment.

    As to how they could approve Tamoxifen, it's a risk/benefit analysis (as with most drugs). The benefit to breast cancer should be greater than the risk of uterine cancer, and I think statistically that is the case when it is recommended. I certainly feel comfortable with my decision to take it for 5 years.

  • Dianeinil
    Dianeinil Member Posts: 39
    edited April 2011

    I still believe hysterectomy is the way to go. It will take away so much fear ! No more uterine cancer no more ovarian cancer. If done robot assisted it is very fast recovery. I have always had a rough time with surgery but I did great. As far as a slight risk from tamoxifin I totally disagree ! Since my experiance I have spoke to many ladies in my area this happened to ! If theres thickening have a biopsy. If you are thrown into menopause the lining should thin as it would during menopause ! I to had a fibroid that was benign. My advice still is be proactive ! I'm here today because of it enjoying my very first grandbaby ! Life is good !

  • jan508
    jan508 Member Posts: 1,330
    edited April 2011

    jennifer:

    I wish you only the best tomorrow!!!! I will be thinking and praying for you!!!

    All the best!

    Jan

  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited April 2011

    Thanks Jan!!!

    Boy, I swear this is the gift that just keeps on giving!! It is all so stressful!  How's your healing after your exchange going?  I hope GREAT!

    xtine,

    My Medical Onc had told me that many GYN's will monitor with U/S and he was not a fan of that!  Said it resulted in too many unnecessary procedures and, unless there was bleeding (I am post-meno) he wouldn't recommend it.

    Then I go to my new (to me) GYN who wants to take a peek since I have been on Tam for 1 1/2 years... Lo and behold thickened lining.  Post-meno that lining should be paper thin but have seen MANY stories of just thickening due to TAM  without it being an issue, just needs to be checked out!  I'm bummed but, I do understand the better safe than sorry so tomorrow is my "taking care of what I must" day!

    I did see one post that referred to Tamoxifen should be renamed to "The GYN full-employment act"

    Dianeinil,

    I cannot thank you enough for posting your story!!! If this D&C shows even a HINT of something wrong OR they tell me that I have to do this crap every year.... I'm done!  If you don't mind answering.... Was there a downside to the hysterectomy?  What was the recovery like?

  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited April 2011

    Aggiecat52 and FionaF,

    Hope both or your D&C's go well!  This really is no fun but, we will all get through it together!!

    OK.... Here's something a bit different!  Just got off the phone with my GYN who wanted to let me know that, because of the very slight increase in blood clots due to TAM (along the same risk as uterine cancer... how ironic), he wanted me to know that they will be giving me a very low dose shot of Heparin tomorrow before the D&C... Anyone else had this?

  • leaf
    leaf Member Posts: 8,188
    edited April 2011

    I didn't before my D+Cs (I'm on tamoxifen.)  Different preferences for different docs I guess.  I did have a leg compression machine though, which is another option.  I think at my place they routinely do leg compressions for all patients ?after age 50? for gyne surgery (with or without tamoxifen.)

  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited April 2011

    leaf,

    Thanks!  Good to know... I think my Mom had one of those when she was recovering from knee replacement. 

    I have a meeting with the doctor before my D&C tomorrow and will ask about that... I'm a new patient of his and i'm positive after tomorrow, there will be a note in my chart as to what a pain in the arse I am... heheheheh!  Hey, it keeps them honest!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    endometrial thickening while on tamoxifen is very common; endometrial cancer is not--the risk of it with tamox is very low, less than 1%. The thing to watch out for is abnormal heavy bleeding, A yearly transvaginal US is a good idea while on tamox to monitor both the uterine lining and the ovaries. The benefits of tamox (specifically reducing the risk of invasive bc) generally are much greater than the risks, but each person should discuss the risks and benefits for their own situation with their own physician.

    anne

  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited April 2011

    Thanks for the info, awb,

    The thickening being common and cancer being rare is also what I have found while checking this out (that is the good news)... If it turns out that all I will need is a yearly transvaginal ultrasound, that will be fine...

     If, however, it turns out that I will have to go through biopsies and D&C every year then I'm thinking that, for me, it is more stress than i can take!  

    Hoping that tomorrow's procedure turns out to be much ado about nothing!

    Edited to add: Ironically, I take great comfort in the fact that i am being treated with Tamoxifen as my cancer was shown to be highly responsive to it... I am now a little scared that they may take me off of it and move me to an AI so, rather than 10 years (5 TAM + 5 AI) I would only be receiving 7 years (2 TAM + 5 AI) but I think I am getting ahead of myself!

  • Aggiecat52
    Aggiecat52 Member Posts: 55
    edited April 2011

    Thanks for the good wishes, Seaside! I finally heard from the Gyn office. Will call tomorrow to find out appointment time. I can't thank all you ladies enough! Reading the postings has helped me stay calm and believe I can get through this. I was a basket case last Tuesday after seeing my GP.

  • Aggiecat52
    Aggiecat52 Member Posts: 55
    edited April 2011

    Good luck tomorrow, Seaside! I will be thinking of you and sending good vibes.

  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited April 2011

    Aggiecat52,

    I was right there with you "in the basket".  I am going through my big old flurry of 2 year out appointments and, while I was worried about the breast testing, never thought that my GYN appointment would be anything other than routine! 

    Wow, was I wrong!  Still thinking this will be nothing!  Will post how things go tomorrow and what the results were when i know them!

  • Dianeinil
    Dianeinil Member Posts: 39
    edited April 2011

    You are welcome ! So far no bad affects:) Actually relief ! I had arthritis from chemo so the achy feelings is no more since the surgery. I say it was great !

    As far as the comment on bleeding is a sign I beg to differ I had NO sign Nothing at all I thought I was perfectly healthy ! And 1% is a joke thats what they say but the risk is far higher.I would take it again to prevent BC but I want everyone to know things need to be monitored ! Many woman that hear my story don't even know the risk is there !!! I'm here to help not to bash tamoxifin

  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited April 2011

    Diane

    thank you for telling your story-I know that the experts say uterine cancer is 1%, but it seems much > er than 1%. I am scared and I know my chance of reoccurance today is less than 5% but my onco still wants tam. Onc said that they have not had a patient die of uterine cancer. Anway, from pre testing it appears that my endometrium is already slightly thick (6mm). So I am asking for a plan on where I am and what the plan will be. Like everyone, I thought I was done with this all. Stage 1- a bilateral- how much more aggressive do  I need to get? With tam am I trading one set of circumstances for another?

    On a positive side- the gym is my new frequent friend, so are several vitamins, and a weight loss plan.....

    thanks for sharing

    chocolate

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    i would like to echo vivre's post- but it seems no one is interested about I3C/DIM as alternative to Tamoxifen specially for post-menopausal women..

    in that case, will keep my "mouth shut".. this is not the alternative forum anyway. but anyone who wants to ask about I3C/DIM, please ask in the alternative forum

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    Hi gurls - I too had a recent biopsy on thickened endometrium (8 months into TAM) - gyn told me he would use this as "a baseline"- will not be proceeding with any more U/S, as he says there's no point.....!  Should I ask for a yearly biopsy even though it almost knocked me out unconscious ?

    At my wits' end with all these doctors !!!!

  • Ellie1959
    Ellie1959 Member Posts: 316
    edited April 2011
    I took tamoxifen for 2.5 years and got a 15 cm cyst on my ovary - that the Onc. surgeon attributed to tamoxifen - and had a total,radical Hysterectomy - now I am back on T - and hating it - the Onc wants me to do one more year - sigh.........,Frown
  • dreaming
    dreaming Member Posts: 473
    edited April 2011

    I took Evista and Tamoxifen, one for 6 months the other not even a year, I had all the side effects under the sun.

    Because of fluid in the pelvic area and negative for ovarian cancer, I had an D&C, it was found that a polyp  had burst. My doctor advise was that I did not need an hysterectomy, that can be tricky in my case , if is done with an open incision because I have mesh holding my abdomen.

    I was fully aware that I was at higher risk for ovarian and uterine cancer. Unfortunately 2 days later I was diagnosed with basal cell carcinoma , that is not related to B.C.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    I just started my 5 years of Tamoxifen.  My Onc has me doing transvaginal ultrasounds of my uterus and ovaries every 6 months as a precaution.  He said it was probably a little "overkill" .. but I'd much rather play it safe.  

  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited April 2011

    Luan,

    hope you don't mind me asking but I know I am going to hear how important it is that I have a biopsy-  was your endometrial biopsy very painful?

    thanks

    chocolate

  • Aggiecat52
    Aggiecat52 Member Posts: 55
    edited April 2011

    Now I have my appointment with the GYN next Tuesday morning. I think I will be getting a biopsy on my uterus, not sure when this is happening. Maybe next week is just the initial consult. Anyway, not looking forward to any of this. It sounds very painful.



    Seaside: How did things go for you today? Hope you are doing OK.

  • Dianeinil
    Dianeinil Member Posts: 39
    edited April 2011

    My doctor suggested advil before the procedure. It was a short lived pain nothing major and went away quickly. Worth it to get answers :)

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