Tamoxifen or Arimidex better for side effects and mood swings?

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Dizzybee
Dizzybee Member Posts: 142
edited December 2016 in DCIS (Ductal Carcinoma In Situ)

I have high grade DCIS with comedo necrosis, good margins after re excision. I'm waiting for radiotherapy, seeing the oncologist in a few days to get that moving. In the UK DCIS is not regarded as something that needs to be treated in a hurry, so everything has moved very slowly. I started taking Tamoxifen three weeks ago, it's the only hormone therapy licenced to treat DCIS here regardless of menopause status. I had no problems when I went through the menopause six years ago, so wasn't expecting to have any problem a with side effects.

But on the third day, I had some uterine bleeding, got an urgent referral for a hysteroscopy. Which showed abnormal thickening of the womb lining, which could be due to endometrial cancer or precancerous changes, or could be nothing to worry about. So I wait for biopsy results for a second cancer. The problem is that Tamoxifen raises the risk of endometrial cancer and even if this is nothing I'm starting out with abnormal results already. And even if the result shows nothing to worry about, they usually treat hyperplasia with high doses of progesterone to reverse the thickening, but not when you have BC, no hormone treatment allowed. The gynecologist is certain the Tamoxifen didn't cause the thickening or the bleeding, that is probably coincidence.

I'm finding all of this really hard to deal with, keep obsessing about having two cancers, keep crying. And I'm thinking some of that is hormonal, Tamoxifen mood swings. I had an episode of depression about twelve years ago, took Prozac for a while and was fine with it. So maybe now I would look to take antidepressants again to help get through this, except that you can't take SSRIs with Tamoxifen.

I don't know whether I'm going to need a hysterectomy in which case the Tamoxifen won't matter. But if I don't I'm wondering if it would be better to push for Arimidex, I don't know whether they give it off licence if there's a reason why Tamoxifen is not advisable. But I don't know whether the depression and mood swings will be just as bad on another hormone treatment.

It is just getting so hard to deal with all this and I don't know what I should be asking for when I see the oncologist. I guess if the biopsy comes back positive the next set of wheels will start turning. I know endometrial cancer is very treatable so I shouldn't worry really. Like DCIS I guess.

Sorry this has gone on for so long, but if anyone has any advice it would be great to hear.

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  • dtad
    dtad Member Posts: 2,323
    edited November 2016

    Hi there. IMO depression and mood swings can be a SE of any anti hormone. However some women do better on one vs another. Good luck and keep us posted...

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  • Annette47
    Annette47 Member Posts: 957
    edited November 2016

    Depression and mood swings might just be from the whole ordeal of being diagnosed with cancer catching up with you. I’ve been on Tamoxifen for 3.5 years and haven’t noticed any changes (I still have occasional depression and mood swings that are mostly related to my hormonal cycle, but I had those before, too).

    In your case the uterine issue is more concerning, otherwise I would say give it a few months for your body to adjust and see where you are at then.

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited November 2016

    There are anti depressant meds that can be taken with Tamoxifen such as lexapro and Effexor. I agree with Annette though, it's okay to be sad and crying at the possibility of having a second Cancer on top of the ordeal of dealing with the first one, and you're not even finished with treatment yet. Sometimes you just have to feel the emotions younare feeling. My doc told me that Arimidex provides slightly better protection against BC than Tamoxifen, but it is not recommended for pre menopausal women, so I'm having some blood tests done to see if I'm post menopausal, and will switch if that is the case. I have not had any side effects from Tamoxifen other than feeling warm all the time, so I can't speak to that.

    Wishing B9 results for you Dizzy.

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  • Nopoli
    Nopoli Member Posts: 21
    edited November 2016

    Hi Dizzybee,

    I'm sorry about your ordeal. I agree with others that it's important to honor your feelings. And I hope that you've been able to comfort yourself as you wait--a very scary place to be.

    I understand where you are, finding myself in a similar boat. After my surgeries for bilateral BC was put on Tamoxifen because pre-menopausal but guessing would have gotten there within the next 2-3 years. I had only one period after I started it. Right before starting, my onc had me have a pelvic and trans vag US, because I had a couple of two week long extra heavy periods, but those were around the times of my surgeries. My endometrial stripe was 7 mm. Just to be safe, random biopsies were done. All clear. So started Tamoxifen and after 6 months, another US was taken because of right pelvic pain. Turns out I have a 3 cm cyst on right ovary, but also endometrial stripe thickened to 10 mm in 6 months, with diffuse cystic changes. Radiologist recommended biopsy, although he was guessing findings were secondary to Tamixifen. Well Onc took me off until we know what's going on. Waiting for mid Nov endometrial biopsy. Neither she nor OBG seem concerned but want to be cautious. So fingers crossed. Don't know what she'll recommend if findings benign, since I'm still not considered in menopause (have to have 1 year with no periods). Guessing will either have to have uterus out or have ovaries shut down so I can go on AIs. Because chances are endometrium will continue to thicken on Tamoxifen. Sorry this is so long. I include details to help others looking for specifics. I think they're not concerned due to kno bleeding.

    It must be very scary for you due to thickening and bleeding. I'm praying that your findings will be benign and if not, things are caught super early. It's hard not to worry (urgh) but I hope you can also do some soul soothing and nerve calming activities. Hang in there and let us know please. Hugs

    M

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  • Dizzybee
    Dizzybee Member Posts: 142
    edited November 2016

    Thanks to all for your replies. I know some of the emotion is understandable, a lot of things are catching up with me now that I didn't really deal with since being diagnosed. But some of it feels a bit weird, like sometimes I'm so down, and then suddenly it feels like the sun comes out and I'm back on balance and a bit mystified about why everything seemed so bad. So I'm wondering if that is just hormonal, it's reminding me a bit of being pregnant! So far as I remember it, long time ago now. Anyway, I need this to stop.

    Nopoli, thanks for sharing your situation, I hope your biopsy turns out okay. It's not like it's a fun process is it? The thing that worries me about staying on Tamoxifen is that it will make the thickening worse and the bleeding will happen again, so I could be doing this a lot of times. But the gynecologist seemed to be saying it was possible it will have to be a hysterectomy even if it's not cancer, depending on the pathology, if it's atypical hyperplasia it's high risk to become cancerous.

    I guess in some ways I'd feel happier if they take the lot out, at least it would be one complication out of the way. But it would be another operation and recovery, I still need to do rads for the BC. Sometimes it's hard to remember life before cancer.

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  • Nopoli
    Nopoli Member Posts: 21
    edited November 2016

    Oh my Dizzybee, I can feel your torment across cyberspace. So much going on. It could be the Tamoxifen causing the emotional turmoil but my two cents think it may also be a so so natural reaction to your diagnosis as well as your body's response after surgery, anesthesia, painkillers?

    I'll share that I've been through a roller coaster of emotions and now see a therapist and am on anti-depressants, but I had clinical depression before, so I can understand how unnerving it may feel when this emotional upheaval is all new to you. As my sister and I like to tell each other, "please don't panic." It may very well be a temporary adjustment to your new reality. No one knows how long it will last but I hope you will believe that it will either pass on it's own if you give it its due and if not, there are many resources out there to help.

    I'm fortunate to have a non-profit cancer center nearby, associated with the hospital, that offers so much support to all cancer patients in the region (not just patients of that hospital). They offer free exercise classes, yoga, music therapy, meditation, counseling, art therapy, journaling, support groups, spirituality quests, dancing and so on. I feel so very fortunate for this. If I didn't have the camaraderie of the ladies there (many BC ladies in the exercise classes), I don't know how I would have adapted. Still am one day at a time--11 months later. Journaling also helps personally, as well as guided imagery audios.

    The fear of recurrence is so very real though. Someone told me and I read that a cancer diagnosis can bring on post traumatic stress, and I KNOW that physical symptoms are my triggers, waking up the FOHR monster. FOR is for Fear of Recurrence and H is for hell. LOL.

    I'm sorry you're going through this, even worse-when you haven't even started your radiation yet. I pray that it's not cancer, that whatever the result, you will have good options, and that you will be able to make a decision that's right for you. It's hard not to anticipate. All I wanted to say was I totally relate to where you are, will be thinking of you and sending you a big hug.

    And thank you so much for your good wishes. I I'm grateful to you for sharing your experience, which helped me learn that there's someone else that's sadly in a similar but scarier/more stressful boat. It's helped my perspective personally. Thank you, Dizzybee.

    M

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  • malvernmama
    malvernmama Member Posts: 3
    edited December 2016

    Hi Dizzybee

    I hope your findings in your uterus/ovaries are benign. I was on Tamoxifen for 2.5 years after a lumpectomy+33 days of radiation. I had DCIS in 2014. I was nervous about taking Tamoxifen because of the scary side effects. But in my case, it seemed ineffective. My menstruation slowed down to about every 3 months. But my uterine wall was normal. I did have mood swings but I just managed it by getting out of the house and seeking spiritual advise.

    However 2.5 years after, I had the dreaded recurrence. They found microcalcifications again on the same breast. My first one in 2014 was only 0.5mm. This new one was about 1.5cm. I had been very vigilant about my annual follow ups. Anyway I ended up getting a mastectomy with immediate reconstruction.

    I am still ER/PR positive. And now that doctors have considered Tamoxifen a failure to me, they are prescribing Arimidex. But we would have to shut down my ovaries. I am 46 and still menstruating.

    Feeling very nervous about the complicated hormone therapy that they are prescribing... considering that I already had a mastectomy on one breast. Perhaps this is to protect my other breast. But all this for Stage 0, non invasive, clear margins.

    Now I just read in your post that only Tamoxifen is licensed as DCIS hormone treatment in the UK. Im not in the UK, I'm in Asia. Now I'm going to seek a third opinion in another country. So confused.

    Hope all is well with you.

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