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Bottle o Tamoxifen

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Comments

  • tangandchris
    tangandchris Member Posts: 934
    edited January 2015

    Thanks lala!

    They called from dr's office and said my out of pocket for the u/s is $108 *sigh*

    I'm gonna hold off for now, can't afford that after this last year of medical bills. I go in for genetic counseling Thursday and that will be a deciding factor on all of this.

  • ndgrrl
    ndgrrl Member Posts: 645
    edited January 2015


    I went to the GP today for ear infection and he pressed on my tummy and OUCH!!  near my belly button on left side- I told him I thought I was ovulating and thought it odd because Tamoxifen I thought would stop that. Since I had a partial hysterectomy I do not get periods so I don't really know what is going on with hormones.    He told me he didn't like that pain and it seemed to high for ovary but you never know so he sent me right away for a CT scan. I had never had one before.  I keep asking the MO's if I should have my ovaries out and they keep saying because I am not BRACA positive they don't recommend it.  I am happy I have a very concerned GP and he will order tests because he says pain is not something to ignore. So now I wait for the results-- I am really scared over it all!! 

  • ChristyJ
    ChristyJ Member Posts: 26
    edited January 2015


    Gemini-my tubal will be different from most.  They'll take a good portion of each tube.  From what I've read, many ovarian cancers originate in the fallopian tubes.  It also looks like there really are no studies at this point that give concrete evidence.  However, since I need to have a way to prevent having any more babies, this made sense.

    lala1-I had a baseline vag ultrasound last year and am having another one a couple of weeks before the surgery.

    ndgrrl-thinking of you-hope all is well

  • ChristyJ
    ChristyJ Member Posts: 26
    edited January 2015

    I just found this, although it's from 2010: 

    Gynecologists have known for some time that taking hormonal contraception will lower the risk of ovarian cancer. You only need to take the pill for 5 years to reduce your risk by 20%. After 15 years of use,  the risk is cut in half. It’s always been a mystery to me why the pill companies go on and on about the pill getting rid of acne and PMS, but never bother to mention that taking birth control  pills  can prevent a life threatening  cancer. Seems to me they would not only be doing a service to women, but  would sell a lot more pills.

    Another little known fact is that tubal ligation significantly reduces rates of ovarian cancer. A report published this past July (2010) analyzed studies tracking women after a tubal sterilization was performed and found that that ovarian cancer risk was cut by as much as 34%!

    But instead of just blocking the tube, what will happen if the tube is completely removed? Last year a paper was published in the International Journal of Gynecologic Cancer suggesting that the majority of ovarian cancers originate from the tube and that  removal of the tube has a major impact on cancer frequency. As a result of that study, the Canadian government recently issued an official recommendation that tubal removal should be performed instead of tubal ligation.


  • gemini4
    gemini4 Member Posts: 320
    edited January 2015

    thanks for the Info, Christy. Very interesting ... I'll admit I know very little about tubal ligation. Good luck with your upcoming surgery!

  • ChristyJ
    ChristyJ Member Posts: 26
    edited January 2015

    Thank you!

  • lala1
    lala1 Member Posts: 974
    edited January 2015

    tangandchris---I would think that your insurance would cover this. I understand that you might not have hit your deductible this early in the year but since your having genetic testing this week, surely that would put you over your deductible. God I hate this....I think if you have "cancer" in your diagnosis, everything should immediately be free!!

  • Lorijo
    Lorijo Member Posts: 2
    edited January 2015


    Thank you :-)

  • ndgrrl
    ndgrrl Member Posts: 645
    edited January 2015


    I got my CT scan results back of my abdomen and I have very big cysts on my ovaries.. 7 cm by 5 cm by 5 cm- No wonder its been hurting.  I have been complaining since I started on Tamoxifen in Sept 2013 that my ovaries would hurt each month and it finally got where they really HURT and my GP decided to do something about it. The MO keep telling me Tamoxifen does not cause this and one even told me because I am thinking of my ovaries that is why they hurt. GRRR

    Has anyone else had this problem since they were put on Tamoxifen?  I have an ultra sound scheduled Monday and then most likely will have to have my ovaries out is what the nurse said..

    TJ

  • chipmunk57
    chipmunk57 Member Posts: 28
    edited January 2015

    Anybody have any insight on taking tamoxifen and warfarin together? I am currently on my second round of blood clots in my lungs and my PCP wants to get me on warfarin long term. Some references say the two together are contraindicated while others just say the dose may need to be adjusted. Thanks tamox ladies !

  • tangandchris
    tangandchris Member Posts: 934
    edited January 2015

    lala-I hadn't considered that...thank you for reminding me :)

  • lala1
    lala1 Member Posts: 974
    edited January 2015

    ndgrrl---I'm 10 days out from hysterectomy due to Tamoxifen causing ovarian cysts, thickened endometrial lining, polyps, fibroids and an enlarged uterus. Don't know why someone would tell you your cysts aren't due to Tamoxifen. The Tamoxifen and resulting cysts were what worried my GYN the most. Tell them to do a very thorough TVUS. Even without surgery, you will want it for future reference. Doctors must understand that while Tamoxifen may be saving our lives, it MUST be monitored carefully. And we MUST be proactive with our health.

  • ndgrrl
    ndgrrl Member Posts: 645
    edited January 2015


    HI Lala-- it just drives me crazy when these doctors keep telling me Tamoxifen could not cause cysts- grrr-- Can I ask you how large were yours- I am in quite a bit of pain and wondering if I will end op with surgery as well.   Are you having horrible menopausal symptoms after surgery? 

    When I told my MO about my pain months ago he told me Tamoxifen prevented ovulation so I couldn't possibly be ovulating. Then went on to tell me what ovulation felt like.. I think I know my body and what ovulation feels like better than a man.  GRRRRR

     

  • L2girl
    L2girl Member Posts: 58
    edited January 2015

    hi, ndgrrl,

    I too have had a lot of cysts while om tamoxifen. I had some MRIs done this fall for other reasons, and they incidentally found several uterine fibroids and bilateral ovarian cysts. My MO was concerned, so sent me for tvus, and ran some blood tests, including ca125. Ultrasound confirmed the fibroids and showed the cysts were both hemorrhagic cysts. My estradiol levels were extremely high, 556. And my other bloodwork showed that I am clearly pre-menopausal. Luckily ca125 was normal.

    My gyno wasn't concerned, but said I should follow up end of December, which i did. So, one of th cysts went away, but two larger simple cysts appeared in its place. The ones on the other ovary shrunk. Anyway, my gyno wasn't very concerned again, she says this happens on tamoxifen, and it will probably just keep happening, each time making bigger cysts. but says I should follow up in 3 mos because it was strongly suggested by radiologist.

    I asked my MO about the high estradiol and he says it is probably due to tamoxifen. The way he explained it is the brain thinks there is not enough estrogen, because tamoxifen is blocking it from getting into the cells or whatever, so it sends a signal to make more.

    Also, there is another thread on here called "Changes during Tamoxifen"' https://community.breastcancer.org/forum/78/topic/...

    where we were discussing this exact thing. One of the girls on there gave a link, which I will add later. It basically talked about the link between high estradiol levels and ovarian cysts in women on tamoxifen, particularly in younger pre-menopausal women who had not undergone chemo.

    Here is the link she gave. I noticed the article is very old though, btw.

    http://www.ncbi.nlm.nih.gov/pubmed/10206289

  • lala1
    lala1 Member Posts: 974
    edited January 2015

    ndgrrl---Wow! How can Tamoxifen prevent ovulation? I was still having periods and I've been on it for 2 years. They were just getting a little more sporadic lately but I think that was actual menopause. I've been having regular TVUS since April monitoring my cysts. Mine were fairly small at 1 and 2 cm and didn't cause me any pain. I actually wasn't having any issues such as pain or heavy bleeding but my lining just kept getting thicker and thicker which was a real concern. And my cysts would come and go. By the time I had my surgery 11 days ago, he only found one cyst whereas at my last US I had one on each ovary. As you go into menopause cysts will sometimes resolve themselves but I wasn't willing to risk the lining part in the meantime.

    As to menopause symptoms, I can honestly say that so far I feel no different after my laparoscopic hysterectomy than before. However, before I was having some issues that really bothered me like bloating, burping, dizziness, nausea etc. It wasn't all the time and I never had hot flashes, just warm flushes a few times at night. Most of my bloating is gone, burping is better, nausea gone and dizziness almost gone (may still have some residual anesthesia effects). I've had more warm flushes mostly around 5am or so which wake me up but not for long. I'm crossing my fingers that this is the most I will have but check with me in about 3 or 4 months and I may be singing a different tune!! I've been off pain meds since day 4 and feel really great. I do have some lower back back if I walk too much at once or stand for too long but I'm confident that will improve once I can get back to the gym. Surgical menopause was my biggest fear and much to my doctor's delight and my dismay, I've had to tell him that he was right when he said he didn't think it would be as bad as I was anticipating. So far...... ;)

  • ndgrrl
    ndgrrl Member Posts: 645
    edited February 2015


    Ty L2 girl and Lala for the information. 

    I swear my MO is an idiot.   Not just him but I called the cancer center talked to a nurse and she asked the MO NP there if Tamoxifen would cause cysts and she said no. grrrrr...   I think I need a new cancer center. This is just making me so angry! 

    Thanks again

  • ndgrrl
    ndgrrl Member Posts: 645
    edited February 2015


    PS.. When estradiol levels are up which mine most likely are.  What can be done to stop this? Change of meds or surgery or etc... ? 

  • lala1
    lala1 Member Posts: 974
    edited February 2015

    ndgrrl---Again, I will just speak to what my gyn told me. He measured my estrogen levels last summer when I was in the "watchful waiting" mode after a negative biopsy but all the other issues I mentioned before. My estrodial levels were 744!! Heck, even pregnant women run in the 200s! I flipped out but he told me that Tamoxifen can cause those levels to be really high and he wasn't that worried about it. He said it's another side effect to Tamoxifen that just bears watching. The only thing that will bring down those levels is a hysterectomy as far as I know. I forgot to ask my MO about it when I saw him a few months later. To be totally honest, out of all the docs I have---breast surgeon, plastic surgeon, MO, gyn, holistic, cardiologist, ENT and searching for new primary---my breast surgeon and gyn are my go to guys for the best info. They have the most experience and are the most respected. My MO, who should (and may very well be) be up to date on BC stuff isn't real forthcoming with info when I have questions. And he's very old fashioned in treatment like not believing in herbal supplements and such. When Tamoxifen was causing me horrendous joint/muscle pain at night, he put me on OsteoBiFlex which didn't touch the pain. When I told him, he just shrugged and said bear with it. I then found a holistic doc who told me to try turmeric and ginger and now I sleep like a baby! My MO poo poos the idea that those things worked. He also told me that Tamoxifen doesn't cause weight gain which we ALL know isn't true. On the other hand, my BS said he went to a BC convention and the question was posed to 2000 doctors "How many here have a patient who did NOT gain weight on Tamoxifen?" and 3 hands went up!! It's a matter of book knowledge and real world knowledge. Don't get me wrong.....I respect him but I think my other docs listen better and respect that I know my body too...and pay attention to their patients better thus resulting in better awareness of BC, Tamoxifen and all that goes with it. Talk to your other docs as well about your concerns. Gather all their opinions and go from there. Then educate the heck out of yourself just as you're doing here!!

  • L2girl
    L2girl Member Posts: 58
    edited February 2015

    Ndgrrl, regarding the high estradiol levels: I asked my MO because it was of concern to me, wouldn't having high levels put me at risk for breast cancer recurrence? He said no, because the tamoxifen would block it from getting into the cells. He also said it could be seen as a good sign, because the high levels meant tamoxifen was working. Go figure?

    Lala, I have a question for you or for anyway who may know, regarding the ovarian cysts. My gyno, who is wonderful and I trust completely, says they are very common, and nothing to worry about unless they are complex cysts or are causing pain. She said they will come and go, and new ones will come and go. That is why they don't do anything about them. So far mine have not caused pain, even though the two on the left ovary are approx. 5x5 cm each. I also have several small fibroids. But my endometrial lining is not thick, luckily.

    Anyway, I have noticed quite a few women on these boards have had to get hysterectomies or ovaries out, etc. I'm just wondering why some with seemingly similar issues as mine need that done, and some don't? I know every individual situation and body is different. And of course thick endometrium would necessitate it. I guess I'm just wondering, should I be worried? I really hope I don't have to get surgery.

  • Downey30
    Downey30 Member Posts: 199
    edited February 2015

    lala 1, would you share your tumeric and ginger amounts that you take? I am having sleep issues and have recently gone off the Tamoxifen. My MO thought I would do "fine" after taking it for almost six years. Although, I read her report that she sent to my Internist and it read differently. I guess just covering their butts. Thanks for any info.

  • ndgrrl
    ndgrrl Member Posts: 645
    edited February 2015

    Thanks for the info.L2 Girl and Lala

    I have an ultrasound in the am for my ovarian cysts which are hurting. I wonder how often they  rupture and how big they are when they do?  Mine are not small.  I don't have an OBGYN but hope to be referred to one. 


     

  • katcar0001
    katcar0001 Member Posts: 321
    edited February 2015

    Here's another article regarding ovarian cysts and Tamoxifen--not quite as old.

    http://jjco.oxfordjournals.org/content/35/10/607.full.pdf

  • LiLi-RI
    LiLi-RI Member Posts: 160
    edited February 2015

    ndggrl: I have experienced a ruptured cyst. It happened at work in 2008. It was a very painful experience. At that point, my OB removed my ovaries. I was only 44 yr. I do not recommend the "watch and wait" approach IF you qualify for removal. I suffered for 1 year with that type of approach. It is an easy recovery! Best, Lis

  • KBeee
    KBeee Member Posts: 695
    edited February 2015

    :(


    I had a corn kernal sized lump removed last Thursday which they were "sure" was scar tissue. They were wrong. I got the call this afternoon that it tested positive for BC. I am devastated. I am grateful that I never went off the Tamoxifen or I would have been asking "what if". Uuugh. So for now, I just wait. Sorry to be a Debbie Downer. I had to vent.

  • BayouBabe
    BayouBabe Member Posts: 1,467
    edited February 2015

    SadOh, Kbeee. I am so sorry you are experiencing BC again. (((((hugs))))) as there are no right words

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited February 2015

    I've been on Tamoxifen for 5 weeks and I am having weird hot flashes. Middle of the night I wake up feeling like I have a raging fever and incredibly thirsty. No sweating to speak of so maybe that's why I feel so hot. I noticed that this happened about 4-5 hours after taking tamox so I switched dose to 6 am. Still having some bad nights thougH and if I eat salty food for dinner it's worse.

    MO want to start me on lupron shots this week as well. I'm concerned symptoms will be worse. On the other hand I have a history of ovarian cysts, so it may be best. I'm going to discuss ooph with MO. Really up in the air about this for the first time in my treatment plan.

    Scottie

  • MagicalBean
    MagicalBean Member Posts: 192
    edited February 2015

    Scottie-it's been 3 weeks for me and so far so good. I do get chilled now and again-don't know if it's Tamoxifen or winter. I take mine in the morning with my first coffee of the day.

  • Lolis
    Lolis Member Posts: 294
    edited February 2015

    Scottie the night sweats seem to get better after awhile. I noticed that they are worse when I have a glass of wine, spicy food or sugar. 

    I have been on Tamoxifen for about 5 months now and I have mild cramps here and there. I haven't had a period in 6 months and I am wondering if it is because of tamoxifen or if my ovaries are trying to revive themselves.  I should probably go see a Gyn, waiting to see an oncology gyn but it won't be till the fall. 

  • L2girl
    L2girl Member Posts: 58
    edited February 2015

    kbee,

    so sorry to hear your bad news. Your dx info looks similar to mine, so this is really hitting home. But like you said, at least you won't have to wonder "what if", since you stayed on the tamoxifen. Sounds like you did everything right. So rest assured, and let us know how you are doing. (((Hugs))).

  • runningcello
    runningcello Member Posts: 101
    edited February 2015

    @kbee i'm so sorry :( we're here for you, always. the great thing is it was caught early, from the size you indicated. may everything go smoothly

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