Another moment of forced exploration

imagine_titleAs I was getting ready to fall asleep, a thought entered my mind. I turned to my guy and asked, “what if I decide to stop Tamoxifen? Leave everything aside and just live my life?”

His response? A very long deep breath.

Don’t get me wrong. I am living A LIFE, but there are times when I imagine having my old life — the one before cancer. Is it possible to ever get that back? Personally, I’ve never heard of it happening. Have you? Maybe to some extent some people go back to their old selves. Maybe people with “early stages” of awareness — the ones who do not want to know too much and only deal with the problem at hand.

I am too aware now.

I am a cancer patient. It took me a while to accept that. For me, it is unavoidable to think about it though. There’re a lot of reminders— the scar on my breast, my fear of letting my hair grow past my chin, the daily Tamoxifen pill I need to take, my regular doctors appts., to mention a few. I had been imagining that maybe, if I eliminated some of those things that remind me of being a cancer patient, I could regain some level of denial. Maybe I would be able to finally create an identity — I don’t know WHO I am these days — and feel a sense of belonging. It felt good to imagine being closer to my old self again.

Except, when I was actually confronted with an opportunity to make such a change, I reconsidered.

Last week, I was given a chance to eliminate one of those things that remind me of being a patient. I’ve been complaining about Tamoxifen side effects a lot lately. The most recent symptoms I’ve been experiencing are hip pains. My mind always goes to the dark place, so I decided to contact my oncologist. It took me over three weeks to call because I wanted to hold on to denial as long as possible. But I knew it was important to let her know about my symptoms.

I spoke to the nurse. After a couple of hours, the nurse called back to let me know my onco isn’t worried about the hip pains. However, she would like me to try to stop taking the Tamoxifen for one week to see if my hip pains are related.

Image that. An opportunity for me to pretend I have a simple life for one week.

Just the night before I was fantasizing about the possibility of stopping it. And yet, even though the test would only be for one week, the idea made me panic. “I am not ready to stop Tamoxifen.” I said to the nurse. It did not matter that my oncologist doesn’t think it’s risky, as she has done this with other patients who experience severe side effects from this medication. I told the nurse I would have to think about her recommendation.

So, I am still taking my Tamoxifen. How does one differentiate between fear and instincts? I tend to follow my instincts but I don’t want to become a victim of fear.

The reaction I had about my oncologist’s recommendation gave me a lot to think about. I’ve been having conversations with doctors about stopping treatment to give myself one chance to build a family. I am contemplating the idea of carrying my child next year. If I do, I will need to stop Tamoxifen for at least a year. Yes, I know some of you must think it’s a crazy idea considering the risks, but it is still possible to have a safe pregnancy. There’s also no proof that pregnancy is linked to cancer reoccurrences. It’s reasonable for you to think I am crazy, but it’s also reasonable to want to have more quality of life.

But it turns out that I’m still scared to try one week without my pill. Perhaps it has to do with the fact that I am still under 5 years. The recommended time on the pill is 5 to 10 years.

Do I really want to leave everything aside to seek the life I had before my diagnosis? Cancer happened. The damage has been done. This has created a fear in me that doesn’t allow me to walk away from treatments so easily. I am afraid I can’t turn off the fear switch. But many women do stop treatments to build families. Why can’t I be one of those women?

I also think to myself, am I so naïve to think I can pull this off? Could it be possible I am still in complete denial about my health situation to even consider stopping treatments? Haven’t I been exposed to enough? I guess I am still holding on to hope in some way, although my relationship with hope is still complicated.

There’s a lot of effort involved with survivorship and more often than not I feel trapped between two worlds. Decision making becomes more challenging. Sacrifices are made. We give up quality of life in order to hold on to existence.

I am not sure how I will do it, but my desire to have a simpler life still lives.

If you are on Tamoxifen, have you experienced hip pains?

Have you taken a break from tamoxifen (or fully stopped taking it) due to side effects?

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
This entry was posted in Coping after cancer, Family, Mental games, Self Awareness, Tamoxifen. Bookmark the permalink.

19 Responses to Another moment of forced exploration

  1. Kimberly says:

    I stopped Tamoxifen due to side effects. But my bc was ER neg PR weakly pos. Doc felt the side effects outweighed the benefit with the ER being negative. And no, I also don’t know any bc person whibjs able to just go back to their “old life” or live the way they did BC…before cancer. Thanks for another great post!

    • thesmallc says:

      Kim, I’ve heard of a few people who have stopped the pill due to the harsh side effects. I complain a lot but I am glad I am not getting the more serious ones. If you are ER-, then it wouldn’t be so bad to stop it. I’ve always wondered if tamox protects against both ER and PR tumors.

      Thank you for your support. xx

  2. Carrie says:

    You are asking a lot of important questions here. Should I continue treatment? Should I pause, even for a short time? The problem is, we don’t know what will happen if we stop. We don’t know what will happen if we continue. And we will never REALLY know why we got breast cancer, even if it is in the genes, why us? But, if you are interested in stopping to have a child, you should look into the POSITIVE trial. I think they are recruiting women now to participate. Have you asked your oncologist about it or has she (he?) brought it up to you?

    • thesmallc says:

      Carrie, it seems that most of the questions we ask are important. And you’re right, we don’t know what would happen no matter what path we decide to take. For now I am taking Aleve to alleviate my hip pains. If that doesn’t work, I may stop tamox for a week.

      I like to blame my gene for my bc although I am aware that’s only one part of the puzzle.

      I am seeing my Onco in Spring and we will have a conversation about the possibility of me having a child (we talked about it before and she said it is up to me to decide). I remember a link you shared on your facebook page about the trial. I will look into it; thank you for the reminder.

  3. Renn says:

    Oh, I suffered greatly on Tamoxifen! I was on it for 2 1/2 years. I hated how it made me feel. Besides the achiness and the unrelenting hot flashes, I felt feverish (like I had the flu). I did not have the flu. My doctors were not concerned and said it was a side effect.

    After two years of taking my daily Tamoxifen religiously, I got the all-clear that I was post-menopausal and should switch to an Aromatase Inhibitor. But I was afraid to stop the Tamoxifen. I was afraid of having even *worse* side effects with Femara. I had heard about the bone pain. I was afraid. So I took Tamoxifen for another 6 months. Then I stopped it completely and gave myself 2 months off before starting Femara. My flu-like symptoms went away. I started feeling better, like my old self. It was wonderful.

    I gingerly began Femara, and the hot flashes *are* less severe than with Tamoxifen. I handled the first year on Femara well. But this past year is when the bone aches and pains hit me. I feel like I have entire body arthritis. I get up out of a chair like my 83-year-old mother. I also developed carpal tunnel in my left wrist. Painful. I have a high pain tolerace, but this is no way to live. Or is it? At least I’m alive.

    Then a few months ago I developed pain on the bottoms of my feet. It was hard to walk when I got up in the morning. So one week ago I STOPPED taking Femara. Guess what? My foot pain resolved within 3 days. Seriously! My bones no longer ache and I’ve only been off the drug one week. I still have the carpal tunnel. But I was afraid I would have permanent effects from the drug if I didn’t take a break and see what was what.

    In total, I was on Tamoxifen 2 1/2 years and Femara for 2 years. Ultimately I’d like to be on the medication for 10 years. But my body needs a break. I plan to go back on it in January.

    I do believe these drugs have a long-lasting affect, and I believe being off them for a short while will not impact my health. But only you can make the decision whether to take a break from these harsh (but life-saving) drugs. Just wanted to share that I understand what you are going through! xo

    • thesmallc says:

      All these side effects are crazy! I am sorry you’ve experienced quite a few. Estrogen is important for our bodies, and when we block it, so many different things can develop from that. I am not sure why I am so scared of stopping tamox when it’s only for a week. I just picture myself in the future, if I get a re-occurrence, blaming that week I was off. I know it’s not realistic but that’s how my brain works. It’s good to know others, like yourself, have taken a break. Maybe my body would appreciate a break. Good luck in January!

  4. nancyspoint says:

    Hi Rebecca,
    As Carrie said, you are asking a lot of important questions and I certainly don’t have the answers. I do know that you’re certainly not crazy for wanting to have a family or for wanting to have at least portions of your old life back. Carrie has excellent advice about that trial. Definitely might be worth looking into that. I’m sorry your life has become extra complicated since cancer barged into it. And yes, there is a lot of effort that goes into survivorship. Take your time with thinking things through and make the best decisions that you can. And btw, I am familiar with that response you got from your guy – that very long deep breath thing. I get the same one frequently from dear hubby. And I’m on Aromasin. Hate it. But… Thank you for sharing.

    • thesmallc says:

      Nancy, thank you for understanding my dilemma and my need to feel more normal (or to have a simpler life). I will look into the trial Carrie mentioned. I will also have another serious talk with my Onco about taking a break next year. There’s a lot to consider. Everything seems important post-cancer. I’ve heard about Aromasin side effects and those aren’t fun either. I am sorry we don’t have something better with less impact on our bodies.

      Our partners worry and they care so much. They also suffer with us. But I am glad you receive the support.

  5. Allie Moon says:

    Hi Rebecca, great post here – you’re certainly not crazy to want to stop Tamoxifen to start a family. It’s such a conundrum and one that constantly goes around my brain too and deciding what is the best thing to do is such a hard decision. I asked my oncologist this last week and he confirmed that pregnancy does not cause recurrence breast cancer. I also heard at a recent event that the effects of Tamoxifen can still continue for a period of time even whilst you’ve stopped taking it so this could provide some added protection. Take care xx

    • thesmallc says:

      Allie, thank you for the encouraging words. I’ve also heard about the effects of tamoxifen lasting for a while after we stop taking it. That’s also encouraging as long as it doesn’t affect the baby (we need 3-6 weeks to clear our body before we can carry a child, I’ve been told). I know you have the same dilemma as me. I’ll keep you informed with any additional information I receive from my doctors. You deserve to have quality of life as well.

  6. Rebecca says:

    My side effect from hell turned out to be headaches. Headaches so bad that I thought I had brain mets. It wasn’t until the MRI came back clear that my oncologist suggested a tamoxifen holiday. I took me a week to give myself permission to stop taking it. My headaches cleared but so did a fog over my brain that I didn’t realize that I had. I tried going back on, attempted the 10mg twice per day route rather than one pill, but the headaches came back immediately. So now I’m on Lupron, which fortunately I’m tolerating rather well. In the new year I start AIs … You are not crazy to want to have a family and live life … and many young women with breast cancer do … but I totally get how scary it is to stop … especially knowing how hard it is to get back on once you’ve stopped …

    • thesmallc says:

      I am sorry about those headaches. I started getting them too, over this past summer, but not as bad as yours. Never stopped to think Tamoxifen was the cause. They come and go which is why I am not too worried. The hip pain seems to always be there though. Started taking ibuprofen last night. I recall taking Lupron when I harvested my eggs. I am glad this drug works for you. It’s def. scary not to be on any type of medication especially when estrogen was the cancer’s diet.

      By the way, thank you so much for your suggestions from months ago. I finally listened to you and started using the gel over a month ago. I am starting to notice a difference. Haven’t tried the second thing yet but I have a plan. Will keep you posted.

      Stay well. xx

  7. I absolutely don’t advocate others follow my example, but I did stop Tamoxifen after two years. I was desperate to start a family and discussed it with my oncologist who said it was my choice in the end. While I didn’t succeed in having a baby, I don’t regret stopping Tamoxifen, but it was a very personal choice.

    • thesmallc says:

      Marie, thank you for sharing your experience. I have a few months to decide what I need to do, and you’re right, it is a very personal decision. My onco also thinks it’s my decision to make but she will support me (although she is a little worried). The other person I need to convince is my guy who is worried about me stopping treatment (he goes back and forth with the idea).

      I am glad you’re doing well. xx

  8. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  9. bethgainer says:

    Boy, could I relate to this, Rebecca! I know what it’s like to be between two worlds and to wonder about my identity. It’s completely normal to feel the way you do; after all, that insidious fear does remain, and it is so difficult to stop treatment, even if it is for a short time. For me, my nemesis was Aromasin. I took it for about two years (recommended time for that was 5 years, I believe). The pain in my bones and joints was so intense, my onc took me off this medication. I was relieved, but terribly scared. I still am wondering if that was the right move. So I do understand the reluctance to temporarily stop with the Tamoxifen.

    And I totally get the wanting a baby thing. And you’re right about pregnancy not necessarily increasing breast cancer recurrence (at least that’s what I heard). In my case, chemo caused premature menopause, so after a grieving period, I decided to adopt. I don’t think being a cancer patient should interfere with your dream of having a biological child. Before I found out I was infertile, my onc recommended I go for the pregnancy.

    Great post, Rebecca, and you ask some thought-provoking questions. I wish I had the answers.

    • thesmallc says:

      Beth, the collateral damage from these medications is brutal. Have you tried taking Tamoxifen? My oncologist said this medication can be used for everyone. In fact, a friend’s mom took it after being pronounced terminal. She has been on remission for 7 years! My onco also mentioned she hears of more complains about Aromasin than the Tamoxifen — can’t imagine. I am sorry you experienced the harsh side effects and that you had to stop taking it. I have faith you will be OK.

      I harvested my eggs which would at least give me a few chances but I am scared. Not to mention everything GYN-related freaks me out. Wishing a stork would bring me a child instead?

      You have a beautiful daughter. I might consider adopting (a girl) if a pregnancy is not for me but I want to give myself a chance first. In my imagination, I picture myself trying.

      We do what’s best for us but even those decisions come with sacrifices.

      Stay well dear friend. xx

  10. Thanks for your post, I think it will resonate with a lot of people regardless of what drug they are needing or recommended to take. Always very helpful to get the opportunity to read your wise thoughts. The life after a Cancer diagnosis can turn you upside down, I am still in my early days but have seen my life fluctuate so much, and can say it appears normal to long for thwg life withiut scars and pills. Best of luck with your decisions 😄

    • thesmallc says:

      Thank you for your kind words. You’re right, this can apply to anyone who struggles with making similar decisions. And yes, cancer can turn your life upside down. The treatments contribute to that. I hope you and your mom are doing well (I don’t recall reading another update on her health).

      You continue to do the best that you can, one day at a time. Good luck to you as well.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s