The Tamoxifen Show: Today’s episode: A dramatic uterus

Recently, I shared my experience of jumping through hoops to get my pharmacy to order me the Teva brand of Tamoxifen – the brand I’ve been tolerating well so far (click here to read the story). As I’ve discussed, fortunately, I haven’t yet experienced what I consider to be the worst side effect of this medication – one that I’ve been thinking of as a “dramatic uterus.”

A “dramatic uterus” is what I call a uterus that is not behaving normal – for instance, heavy bleeding or not bleeding at all while being pre-menopausal, polyps, thickening of the endometrial lining, or in worst cases, endometrial cancer. I am definitely not ready to begin facing such drama, because I am still deeply attached to the hope of one day having a child.

However, lately I’ve been experiencing some changes with my menstrual cycle. My doctors seem to think it’s all related to stress. But we also know that Tamoxifen can contribute to these changes. And as I get older, I know that other age-related issues can come up.

Over the past few months, my periods seemed to be fading away — until a few weeks ago, when I experienced very heavy bleeding (but still within the “normal” 21 day-cycle range). Still, I panicked, as usual, and contacted my GYN who suggested I come in for a sonogram the following day. We decided to check my hormone levels so my doctor could look at the entire picture and make a recommendation.

Now, if you’ve read enough of my posts, you would probably guess what I did next. I reached out to Dr. Google and to other patients who have experienced similar situations. And basically, it is what it is. These cancer treatments cause a lot of collateral damage and we either deal with them or make a decision to stop them. Both are very hard decisions to make and hard courses to follow.

After all my examinations and tests, my doctor concluded that I’d just had an unusually heavy but otherwise normal period (for the first time in a while). She said that my uterus doesn’t need any procedure done at this time – such as a D&C or a biopsy – because there was nothing really suspicious (thank goodness!). She reminded me that I am still young and my ovaries are still functioning. “If you have sex right NOW, you can get pregnant!” she stated bluntly. Apparently all that bleeding could have been related to the fact that my body is still trying very hard to adjust to the Tamoxifen AND to act normal, even after all these years of treatment.

My GYN suggested I do another sonogram in three months. She also talked about my level of stress during the last year, as she has noted some changes in me, including loss of weight. She is aware I am under too much stress at work and recommends that her patients be open with their employers about their health risks, and the potential that excess stress symptoms can interfere with patients’ treatment and progress. Work is always a complicated situation when it comes to managing health issues, and I agree that patients need to speak up for their own well being. And hopefully their employer will be supportive.

I am meeting with my Oncologist next month to have a discussion about my overall health plan. She has also expressed some concerns about my level of stress.

As many of you already know, I have no children. I still would like to have a child, if my circumstances allow. The thought of cancer taking that option away from me makes me feel emotionally devastated (yes, I am aware of options such as surrogacy). Having a healthy uterus represents hope for me, even if I am not trying to achieve pregnancy at this time.

It is true I have taken a long time to make the decision to get pregnant. It is a hard decision after all, especially with my health situation, but my Oncologist seems supportive and is open to this idea. However, some people judge, and feel I’ve taken “time” for granted. Apparently it is my fault that I have not taken the risk to have kids, as someone insinuated recently – such kindness. (Not that stopping Tamoxifen and getting pregnant will automatically cause a recurrence, but it’s still a risk.) I wish people would just stop blaming patients for their circumstances, shut their mouths, and mind their own business — especially when patients are trying to stay alive as long as possible while dealing with survivorship challenges. Unless these people want to offer to carry my child or offer some other rational solution — then we can talk business.

So, going back to this latest episode with my dramatic uterus, maybe my uterus really isn’t acting too dramatic at the moment, after all. I hope it stays that way for a while though. Dealing with one cancer is bad enough.


About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
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15 Responses to The Tamoxifen Show: Today’s episode: A dramatic uterus

  1. illlive says:

    Enough drama from that uterus! Wishing you well always.

  2. Jennifer says:

    People kill me with their unsolicited opinions and advice on other people’s choices when it comes to havng kids. It’s nobody’s business, especially given all you’ve been through. So rude and insensitive.

    • thesmallc says:

      Jenn, I’ve heard so many different things from people, but I admit when it comes to this topic (kids), it really gets to me. You’re right, it is very insensitive. How about saying something like, “this must be difficult for you, but I believe when the time comes you will make the right choice for yourself; I support you”. Too much to ask for, maybe? And sometimes I don’t want any answers given to me. I just want someone who listens. I am still grateful there are others like you who understand. xo

  3. Iridacea says:

    First off a hopeful tidbit. While I was in treatments, my nurse navigator told me her story of having her baby after completing treatments for breast cancer. There is hope for a healthy baby post treatments.
    Secondly it is truly stunning what opinions people feel free expressing to women about their fertility.
    Thirdly, May a beautiful path open up before you, most especially with a nice boring fully functioning uterus. ( is that an opinion?)

    • thesmallc says:

      Thank you for your kind wishes, my friend. It is encouraging when I hear stories of other patients who have had children, including someone I know who was diagnosed much younger than I was (and her type was also estrogen +). But it is still so difficult for me to make that decision and at times I wish it wasn’t (but nothing is “simple” after cancer). A boring fully functioning uterus sounds great to me! I’ll take it. Wishing you well. xo

  4. i hope your situation improves and your stress levels decrease. i am dealing with a similar thing now (weird ultrasound due to tmaoxifen, possible biopsy, more cancer possible though not expected) – and it is really unpleasant with about 7687688879807 more things that cancer caused. hopefully, you stay healthy, strong and have a bit more joy!

    • thesmallc says:

      I am sorry you’re dealing with this. I hope everything turns out OK and that you get your answers quickly. I know the wait and not knowing what’s going on bring some level of anxiety (I hand that over to Ativan). But hopefully this would just be an unfortunate side effect with no complications. Thank you for your good wishes. I wish you well. xo

  5. Debbie Kerr says:

    I have a dramatic uterus. I’ve had a d&c and a polyp removed, which was not cancerous. I will turn 56 in a few days, but my blood work does not indicate that I’m in menopause even though I haven’t had a period since my chemo over 5 years ago. Since they (oncologist and GYN) don’t want me to switch to aromatase inhibitors until they are confident I’m in menopause, I continue to take Tamoxifen and have a test done regularly to see if everything still looks good…at least as good as it gets with Tamoxifen.

    • thesmallc says:

      Debbie, I am sorry you’re dealing with a dramatic uterus too. Glad your biopsy didn’t turn out to be cancer. I hope the procedure wasn’t too bad and that you had a smooth recovery. My hormone levels seem to be normal at the moment. Hoping they stay that way for a few more years. You stay well and I hope you have a wonderful Birthday! Wishing you many more healthy years. xo

  6. Kimberly says:

    So glad there was no drama. I had a similar scare when I was on Tamoxifen in 2011…except I hadn’t had a period in about 2 years, ever since chemo started. Then just WHAM! Massive heavy, heavy, heavy….& of course it was over a long Christmas weekend, so I had to wait to see my ob/gyn… They had me doing the sonograms every three months while on Tamoxifen….So of course by the time I got to see my doctor, I was convinced it was uterine cancer. But it wasn’t. It was just a crazy heavy period. And the last one I ever had….

    • thesmallc says:

      You were probably so worried, Kim. And the wait must have been difficult. Ugh! Glad it turned out to be nothing. My period stopped for a year after chemo, but then it came back (some months lighter than others). Wondering if my recent period will be my last. I do the sono every 6 months (fun!). If I had a child, I would remove everything. I am mentally tired from all of this. I know eventually I would want to have the surgery. I just never thought I would be thinking about it in my 30’s. Sorry you had to go through this too. xo

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  8. bethgainer says:

    People can be so very judgmental, and these asses need to shut their mouths. How dare anyone tell you when you should have had a baby or why you are “taking so long.” You’ve been dealing with cancer for goodness sakes! I am glad your uterus is “healthy,” and I hope that one day your dream of having a child is fulfilled. ❤

    • thesmallc says:

      Hi Beth! I think in a way people need to see a sign that I’ve moved on. I think building a family is a representation (to these people) that cancer is over and I’ve taken the opportunity to start over. But the reality is cancer makes you feel stuck in so many ways. Yes, we keep going with our lives, but we also have to involve cancer in all the big decisions. And no, this isn’t about “cancer winning” as the fairytale suggests. Thank you for your kind wishes. I hope your MRI went well. We should catch up soon.xo

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