tamoxifin and endometrial cancer

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  • Juli50
    Juli50 Member Posts: 859
    edited May 2011

    Thanks Britchick and Luan - I will let you know how it goes on Monday.

    Crselby - I have never heard of a rectocele, but I am glad it can be repaired. :)

    Juli

  • corian68
    corian68 Member Posts: 168
    edited May 2011

    Thank you for posting this! I just said no to Tamoxifen because I've had endometriosis for 20 years. Oncologist treated me like an idiot until I brought him government documents proving that it is a known carcinogen that causes cancer! I told him I was NOT going risk one cancer for another.

    We have to get the word out....this is a dangerous medicine.

  • Aggiecat52
    Aggiecat52 Member Posts: 55
    edited May 2011

    Corian68: I have been taking Tamoxifen for 2 1/2 years because my cancer was highly estrogen positive. I certainly know there are some bad side effects with this drug and I have just had a biopsy done on my uterus. I'm hoping everything will be OK. There are other medications out there that you can take instead of Tamoxifen. Are you opting for one of those or skipping hormone treatment altogether?



    Aggiecat

  • corian68
    corian68 Member Posts: 168
    edited May 2011

    Anggiecat52-



    Since I have my ovaries & uterus with an insane history of Endo. 6 laporoscapies with laser surgeries. I am not going to take a synthetic estrogen blocker. First I am going to check my hormone levels to see exactly where my hormones are? My little beast was estrogen drunk so most likely I am estrogen dominate. Which probably means my progesterone is too low. After I do the 24 hour hormone test I will know exactly what is out of whack. There are natural supplements that lower estrogen. ( DIM) Indole 3 Carbinol. That is documented to be effective for lowering estrogen.

    I will give it my best shot and be monitoring estrogens every month, if it doesn't work....then I will re evaluate and go from there.

    I wish you good health!

    I live in Ca. There is a proposition " Prop 65" it lists all known toxins and carcinogens that are legally used in everything. I have gone organic so I was looking on the site to see if I recognized anything? Tamoxifen is there twice. known to cause cancer.....what the heck right?

  • corian68
    corian68 Member Posts: 168
    edited May 2011

    Wow, I was on a different thread responding to a question someone asked about just learning something that her oncologist never told her about.

    I am shocked that there are some really rude women on here. Why? We all have different paths to walk but basically we are going in the same direction, better health, right?

    Just because you don't believe something, doesn't make it untrue.....and just because you believe something doesn't make it true.

    We are here for support & to learn ......not blast one another for differences.

    Disappointed :(

  • Dianeinil
    Dianeinil Member Posts: 39
    edited May 2011

    When I started this discusion I never meant to give anyone the impression I would never take tamoxifen. I wanted you to realize that it is FAR more common for women to get uterine cancer from it then we are told and now I'm finding some aren't even told this could happen ! Well it did happen to me with NO symptoms. Just be proactive. Have biopsies watch for signs . That was my message

  • corian68
    corian68 Member Posts: 168
    edited May 2011

    Nothing about BC or Tamox is easy to figure out. But it is very important to look at everything and every risk/ benefit. I have & for me ( not everyone else) is not an option. Obviously for many it is and hooray for the confidence. I have 4 friends that were on Tamox and all 4 had endometrial problems. This thread is Tamoxifen and Endometrial cancer. There is a ( proven) risk for Endo cancer/problems, just as there are proven studies for effectively blocking estrogen. We need to know everything about the medicine especially if you have uterus & might want to keep it. These boards are for discussing opinions, emotions and asking what experiences women have had?

    I take back " Tamoxifen is a dangerous medicine"

    tamoxifen is a known carcinogen

  • corian68
    corian68 Member Posts: 168
    edited May 2011

    Not one of my BC mates were aware of the Endo risk. They say they would never have taken it if they did. There are other estrogen blockers they would have opted for. But now it's too late. Their feelings, their words not mine.

    BLMX Feb 14th ( happy V Day to me!) 2011
  • Aggiecat52
    Aggiecat52 Member Posts: 55
    edited May 2011

    Today I got my first three months of Aromisin! I will continue with my Tamoxifen until the beginning of June and then do the switch. Before the switch, I will be getting a bone density test - standard stuff. While at my GP's office found out that my uterine biopsy was benign, however, not enough tissue sample was taken to give a definitive diagnosis. I will seen the GYN next Wednesday and see what's next. I get the feeling I'll probably be getting an OR procedure like a D & C in the not too distance future!



    Anyway, when I switch medications, hopefully I won't need anymore uterine biopsies in the future! On the down side, I need to give up grapefruit, which I love. I guess that's the tradeoff.



    Aggiecat

  • traveler56
    traveler56 Member Posts: 164
    edited May 2011

    Hi everyone -- I posted a different thread but see that you are all talking about what I am wondering about.    I have been on tamox 2 and half years, usual side effects - hot flashes, weight gain, tummy issues, but nothing unbearable.    Had a uterine thickening last year so doc tried to do a endo biopsy in the office but so painful i could not get through it well.   i have had two children by c section because i did not dilate, no women in my family can interestingly enough.    so i said no more office biopsies, bring on the needle in the arm and Versad and put me in happyville, i don't care, i would rather have a d and c.   Flash forward this year -- thickening again and they want to do a hysterosonogram - a ultra sound with saline injected into the cervix - and I am freaking that it will be like the biopsy?   hate to be  a baby, but asking for D and C instead - am i crazy????

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

    Hi Traveler, u,re no baby, not dilating is NOT fun. would the d&c achieve same results as the sonogram ? If not, could u ask for something strong enough to put a smile on ure face ?

  • traveler56
    traveler56 Member Posts: 164
    edited May 2011

    THanks Luan -- after my bc lumpectomies, I had two, i was out of the facility and eating lunch within an hour so I know I am fine with the light anethesia (although one time the nurse actually looked like a deer with glasses on).   I also went to work every day after rads so I am preety good but these things just make me anxious as my crazy sheltie.    MY NP said she would give me a valium, as a pill.   Last time I tried the biopsy, i actually took a couple zanax and the ibuprofen and still went off the table.    So I don't know if valium is going to do it or I am just making too much of it.........

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

    traveler56,

    I posted a response over on your thread....

  • crselby
    crselby Member Posts: 4
    edited May 2011

    My story for those of you about to undergo a procedure to your uterus that involves dialating the cervix:  My gyn gave me a prescription for a pill that is used prior to abortions.  It softens the cervix.  For my hysteroscopy (and saline injection) I was awake and not in pain, just uncomfortable, but immediately OK when all tools were withdrawn.  I took the pills again the night before my polypectomy, for which I had an anesthesiologist knock me out for about 20 minutes (not my choice) with Versaid & something else. You might want to ask your gyns about this pill.  It is NOT the 'morning after' pill.

  • rgiuff
    rgiuff Member Posts: 1,094
    edited May 2011

    The pill is called misopristol or cytotec.  We use it in Labor & Delivery to induce labor by softening up the cervix.

    I've also been on tamoxifen for 2.5 years.  Have been getting my uterine lining looked at every 6 months with the TVUS, as well as external pelvic ultrasound.  After my 1st year on tamoxifen, I had the 1st ultrasound and my ovaries had lots of follicles and uterus was thickened to about 10mm, but the GYN said that wasn't enough to do a biopsy.  I also would sometimes have pelvic pressure and feelings like my period was coming.  Period stopped for almost a year and then came back for 2 months.  The next sonogram, the lining was about 8-9mm and last time, it was even thinner.  I've also stopped menstruating for about 16 months now, so maybe I'm in menopause.  Since my last period, I've had no further pelvic discomfort.

    I too, was ambivalent about taking tamoxifen.  But since I've had no major problems so far, I've continued to take it.  If an ultrasound were to show any signs of thickening now or anything suspicious, I've decided that I would immediately stop the tamoxifen.  For me, with a Stage 1 cancer, the 5 year benefit is not worth losing my uterus or ovaries for.  I'm scheduled for my next GYN visit in a week.  

    Just had my 3 year post lumpectomy mammo and everything is looking good!

  • traveler56
    traveler56 Member Posts: 164
    edited May 2011

    I have to call my doc tomorrow.  I decided I did not want any invasion into my cervix without anesthesia due to my history, besides, the TVUS already showed thickening to 6 mm (last year it was 8 before the D and C)so the hysterosonogram is only to verify the measurement.       So if it is thought to warrant a D and C to rule out any thought of cancer, I am better with that.  I am 54 and have not had a period since starting the tamox but i probably was going into menopause anyway.

      I had my annual mammo today.   I looked at the images on the computer when she was done, and saw no microcalcifications, which is how I got here in the first place, so keep fingers crossed for it to pass all other looks!   I also found out I may be able to retire from NYS in December when i turn 55! I didn't think i would have quite enough time but I bought some old time back!! Whee -- Pet Smart here I come!

  • Juli50
    Juli50 Member Posts: 859
    edited May 2011

    I was told yesterday by my onc's nurse that my ultrasound showed uterine thickening, but she didn't say how much, just that my onc wants me to stop Tamoxifen asap. If I can't go on an AI because I have osteoporosis (from chemo), do I have any other options?

    Juli

  • traveler56
    traveler56 Member Posts: 164
    edited May 2011

    I don't know, Juli, maybe some of the others can respond to other options.  I know the thickening that I have had  -- my onc kept me on the tamox but we did the D and C to rule out cancer cells - last year it was benign,normal tissue.    This year thickening again (6mm)  and I just got word yesterday i am going for a D and C on June 17 (which i prefer as cannot tolerate biopsy in the office)  if this keeps up, rather than stop tamox, we are talking hysterectomy.  I am 54 - on t for 2 and a half years.    Onc says because my cancer was DCIS, Tamox is the only option (plus i am a high metabolizer and extremely hormone positive cancer)

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

    Traveler, I don't blame you....invasion indeed.  Don't know how I'll react the next time they tell me I have to do the bx.  Watch out for those funny looking nurses, though. ha ha and let us know how it went.  P.S. happy for you on all the good news !

    Juli, I really am not an expert, but I read that Raloxifen as SERM has passed testing with flying colours for menopausal women.  Don't know if you are... You may want to google and see.

  • Juli50
    Juli50 Member Posts: 859
    edited May 2011

    Luan - I was on Raloxifene before I was on Tamox. Maybe I can go back on that.

    Traveler - Thanks. I really need to talk to my gyno or onc. I will call again.

  • Juli50
    Juli50 Member Posts: 859
    edited May 2011

    My gyno said my uterine lining is 1 cm. He is doing a biopsy on 6/8. :(

  • comingtoterms
    comingtoterms Member Posts: 421
    edited May 2011

    Hi Girls, Just wanted to let you know I got the nod of approval for my "Tamoxifen Holiday." I was weeping at the Onc.'s today and told him I didn't know how many more gynecological cancer scares I could handle, or how many more outrageous periods I could take. He gave me a reprieve from Tamox until my next appt. on August 15th. Hurray!! It feels better having his blessing! And I got a clean mammogram, to boot! Tammy

  • Juli50
    Juli50 Member Posts: 859
    edited May 2011

    Congrats on the clean mammo, Tammy! and we are on holiday together!

    Juli

  • Beeb75
    Beeb75 Member Posts: 325
    edited May 2011

    Dianeinil, 

    You say: "I wanted you to realize that it is FAR more common for women to get uterine cancer from it then we are told..." 

    Why do you think it is far more common than we are told....because you got it? Just curious. I'm sorry that happened to you, but the large studies of women on tamoxifen show that uterine cancer happens to about 2 out of 1000. It seems that you were just one of those unlucky women, no? Again, I'm sorry you had to go through that....but I don't think your experience means that it's far more common than we are told. 

    Edited to correct frequency of uterine/endometrial cancer for women on tamoxifen 

  • moonchild64
    moonchild64 Member Posts: 49
    edited May 2011

    The risk of uterine cancer might be 'low' (whatever that means, my risk of bc was 'low' too), but the side effects of Tamoxifen are very very real.  While I (hopefully) would never be diagnosed with another cancer, I cannot ignore the pelvic pain, endometrial thickening, backache (from an enlarged tipped uterus), cysts and fibroids.  I hate feeling like this and I hate knowing that, according to my oncologist I have at least another two years of this drug - a known carcinogen to our reproductive organs. 

    I don't like the hostile environment Tamoxifen seems to be creating inside me and want to make sure my risk of any type of reproductive cancer is ZERO.  I have met with a gyn onc and am moving forward with a hysterectomy So, I say thank you to Dianeinil for sharing her story and her concern.

  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Hey Moonchild,

    About that backpain?

    Could you be more specific?  Yesterday I bent over in the driveway and the worst pain I have EVER felt in my life (bar none) occured in my lower back.  It dropped me to my knees and I actually screamed...I couldn't get up for 10 minutes, and couldn't put any weight on my heels for about 30 minutes....I had to walk on my toes...

    Never had anything happen like that before in my life.....I did have some muscle spasms during chemo...but damn it really hurt....and today I am still sore from it.

  • corian68
    corian68 Member Posts: 168
    edited May 2011

     Aside from having endometrial problems my whole adult life, I am totally uncomfortable being treated for a potential recurrence with a carcinogen, doesn't make sense? There are other inhibitors out there....

  • Dianeinil
    Dianeinil Member Posts: 39
    edited May 2011

    Well beeb75 since being diagnosed I have been told of many more woman in my area alone that have had this happen . I can name many within a 25 mile radius of my home. If its so rare why am I hearing it so often ? I also wanted people to know because many I speak to actually say they never heard that it could happen ! Now thats scary. As I said if I didn't know this was a possibility and my doctor weren't proactive and biopsed I would still be thinkng I was FINE! I had NO symptoms. It was caught early like it should be ! My odds of it returning because it was early is 1% but then again so was the odds of getting it. As Moonchild said they tell us the risks in small percentages but I don't buy it. Be vigilent. Why even doubt what I say I'm not here to scare people I'm warning people ! Tryin to save lves ! Isn't that what these forums are about ?

  • Dianeinil
    Dianeinil Member Posts: 39
    edited May 2011

    Thank you Moonchild I appreciate your comment I am hurt that someone would question my post ! I am only helping warn women not to scare anyone ! I feel blessed I had mine caught early :)

  • corian68
    corian68 Member Posts: 168
    edited May 2011

    Dianeinil,

    Exactly! we have a right to know what it is we are taking & what the risks may be. I had no idea it was a known carcinogen? I had to figure it out my self. My oncologist knew...with 6 laser surgeries in my history for endo problems, why would they still prescribe it? when a " high risk endo person" is guaranteed problems. 

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