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Do I need tamoxifen if both breasts removed?

Dayla
Dayla Member Posts: 4

I am about to have a bilateral mastectomy and I just cannot understand why I need to take tamoxifen or an aromarase inhibitor. Can someone please explain why I would put myself and my husband through all the nasty side effects if I really don't have to?

Comments

  • elainetherese
    elainetherese Member Posts: 1,625

    Hi!

    Surgery is a local treatment. It removes the tumor and nearby breast tissue. However, it cannot address those microscopic cancer cells that might have broken off from the tumor and may be circulating in your lymph system and bloodstream. Those cells could be the source of a recurrence. Tamoxifen and the AIs starve these cells of estrogen (each in their own way), thus depriving them of a substance necessary for their development.

    No one dies from having cancer in their breast; they die when that cancer sets up shop in a major organ like the liver, lungs, brain, and the like. Hormonal therapy and chemo are systemic treatments designed to prevent breast cancer from invading those organs.

    Finally, not everyone has nasty side effects from Tamoxifen or the AIs. People who struggle with these treatments are more likely to post here than those who do not. I've been on Zoladex + Aromasin for seven years, and I rarely post on the hormonal therapy threads because my problems have been minimal.

    Good luck with your surgery!


  • ruthbru
    ruthbru Member Posts: 46,722

    As Elaine says, what surgery option you choose plays no role (as in zero) in the need to take an anti-hormonal. Estrogen is made in another part of your body. If any microscopic cancer cells have already escaped the breast (alas there is no way to tell that with present technology), the estrogen still being produced will fed those cells. The anti-hormonals should keep this from happening. I took Arimidex for 5 years without any problem. The ladies I know personally who have taken anti-hormonals have had very few problems as well. As Elaine says, when you read about people's experiences online, it's mostly those who are having problems who are posting. The rest are just out living their lives. Best of luck to you!

  • moderators
    moderators Posts: 7,689

    Dayla, welcome to Breastcancer.org! We're so sorry for the circumstances that have brought you here, but we're glad you've joined us. As you can already tell, this is a wonderfully supportive community. As a suggestion, there is a forum all about Surgery - Before, During, and After that also may be particularly helpful.

    Wishing you good luck with mastectomy. Please keep us posted on how you're doing!

    The Mods

  • gb2115
    gb2115 Member Posts: 551

    Hi Dayla! It's because there's no way to know if any cells escaped from your tumor prior to your surgery. They certainly can and do travel undetected, until one day they show up as distant metastasis. The reason for the hormone therapy is to starve those cells so they can't grow. No one really wants to take a medication, but at least there's something out there that can help us hopefully ward off metastasis.

  • sunshine99
    sunshine99 Member Posts: 2,479

    Dayla, you may not have any of the nasty side effects. I didn't. I took the recommended meds and I'm not sorry that I did. If your cancer should ever recur, you probably don't want to think that it's your fault because you didn't take them. I suggest doing whatever you can to keep this beast at bay.

    Carol

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648

    Dayla,

    I join the previous posters in saying that surgery serves a different purpose than anti-hormonal drugs as has been explained. Yes, some people do have side effects that can range from mildly annoying to quite harsh. Most folks don’t experience the extremes so why not go into it with a wait and see attitude? If you think that most people do experience “nasty” side effects by reading through this forum you would be getting a very biased POV as people do not seek support when things are going well.

    Everyone has a choice in these matters. As long as you can live with the outcome of your choices then do what you think is best but please let go of the belief that “nasty” side effects are an inevitable outcome for everyone. Take care.

  • Dayla
    Dayla Member Posts: 4

    Thank you all for your replies. I understand now why it is so important. I am just so worried that not only am I losing my breasts,I will be completely losing my entire sex life as well. Hopefully I am not one who has negative side effects!

  • Dayla,

    Others have explained why these meds are recommended. It is also important to understand that the need for these meds, and the benefit you get from taking them, depends entirely on your diagnosis and the amount of recurrence risk you face because of the diagnosis. The greater your risk, the greater the benefit. For example, for those with a diagnosis of Stage 0 DCIS or Stage I DCIS-Mi, normally Tamoxifen or an AI is not recommended after a BMX, because the risk of recurrence after these diagnoses, with a BMX surgery, is so low.

    What is your diagnosis?

  • Dayla
    Dayla Member Posts: 4

    My diagnosis is stage 1 invasive ductal carcinoma on the left and stage 1 invasive lobular carcinoma on the right

  • moth
    moth Member Posts: 3,293

    A bilateral presentation would tip the scales in the favour of hormone suppression IMO

    other factors include how strongly ER+/PR+ your tumors are, their grade, and your age

    Your final pathology from the surgery (plus likely the Oncotype test) will drive a lot of the treatment options after & make it clear how much benefit you will receive from each intervention to reduce risk of death.

  • Just want to share my experience with tamoxifen with you.

    The first few weeks I experienced weight gain and water retention.

    Also really bad leg cramps.

    Now, three years later, I’m back to my pre surgery weight, no leg cramps anymore and my sex drive is the same as before.

    Don’t de afraid (I believe fear can make you feel SE that aren’t really there) to take the medicine.

    It can be really manageable. Right now all I can complain about is cellulite hehehe, small price to pay for being cancer free, in my opinion.

    I’m sure you’ll do great on the meds and you’ll have a great outcome

  • Dayla
    Dayla Member Posts: 4

    Thank you all again. I really appreciate all the support! My surgeries are on the 15th so coming up soon

  • ZephyrCA
    ZephyrCA Member Posts: 7

    Hi there. I just had a bilateral mastectomy and have been put on tamoxifen. The way it was explained to me is it is part of my treatment plan since my cancer is ER+ and I am Stage 3. I will likely be on it for the 10 years so done at 46. The worst side effects I have had so far are period delays, blurry vision, increased anxiety and night sweats.

  • ruthbru
    ruthbru Member Posts: 46,722

    Best of luck, Dayla. Heart