Damaged/history or detached retinas: Should I start Tamoxifen?

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KellyinJapan
KellyinJapan Member Posts: 3
edited August 2018 in Hormonal Therapy - Before, During, and After

I am a 36 year old American woman living and working in Tokyo. I don't speak Japanese and had only been living in Japan for 9 months when I found out I had breast cancer in June 2017. I had a skin saving mastectomy in July with an expander put in. The cancer is ER+ and had spread to 1 lymph node. I did 8 rounds of chemotherapy (4 AC and 4 Docetaxel). Luckily all of that is over now, but the doctors have prescribed Tamoxifen for me. I am having breast reduction surgery on my healthy breast in March before I do my reconstructive surgery this summer. I am supposed to start taking the Tamoxifen in late March.

I'm really scared about taking Tamoxifen! I had heard and read all about going into an early menopause- hot flashes, weight gain, emotional issues etc. and felt prepared to handle those. Only when they actually gave me the prescription for the Tamoxifen did I hear about the side effects dealing with retina and cataract problems. At 30 years old, I had a detached retina and found out that I have genes that cause thin retinas. I had 6 surgeries to try to save my eye sight in my right eye, but they failed. I am now blind in my right eye and my left retina is thin and had many holes in it that had to be closed with a laser surgery.

Cancer is scary and horrible, but going blind is much more scary to me. At my doctors appointment, they said to just take the Tamoxifen for 3 weeks then have an appointment to discuss any side effects I experience. And they said they would set up an appointment for me to meet with a retina specialist at that time. (It might be a language barrier, or they might just not understand how delicate and damaged my one functioning retina already is.) I'm about 90% sure I'm not going to start the Tamoxifen, but I just wanted to hear from any other survivors who have retina/severe eye issues and have been advised to take Tamoxifen.

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  • exercise_guru
    exercise_guru Member Posts: 716
    edited February 2018

    Wow that sounds like a very hard time. Sending you positive thoughts. Could you explore the option of ovarian suppression and taking an Aromatase inhibitor? I am not sure what they do to retinas. you could search for the SOFT studies and the TEXTA studies but ovarian suppression was important for your age group.

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2018

    Hi Kelly-

    We're so sorry for what you're going through, we certainly understand your fear and hesitance! We understand that the language barrier makes it more difficult to get correct information, that sounds incredibly frustrating. Do you have a friend or someone who can come with you to one of your appointments who is fluent in Japanese? Perhaps they can help explain things for you and to you. And we would suggest, if possible, making an appointment with an ophthalmologist or even a retinal specialist, if there's one in your area. Perhaps they can help explain what sort of effect the Tamoxifen would have on your remaining retina.

    We wish you the best of luck getting this sorted out, please keep us posted on how you proceed!

    The Mods

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited February 2018

    My sister went through what you are going through with your retinas. She does not have breast cancer, though. I would see an eye surgeon, preferably one experienced in vision loss, and get their opinion. If the risks outweigh the benefits, then you might ask about evista. I understand more women are using these days, even those diagnosed with breast cancer. Have there been any advances in retina transplants in Japan?

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited February 2018

    Having had Retina surgery myself, I would do my best to see a retinal specialist asap. Maybe the other medications might work. Good luck. I’m sorry that you have so much trouble in a foreign land.

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  • KellyinJapan
    KellyinJapan Member Posts: 3
    edited February 2018

    Thanks for all the encouragement and advice! I've been really lucky with the health care in Tokyo. 90% of the doctors I've seen are fluent or nearly fluent in English and the hospital provides me with a free translator who has been coming to most of my appointments (she's been a huge support and more like a knowledgable friend to hang out with me all the time at the hospital, in addition to helping with language issues). Unfortunately, the translator didn't come with me when I was prescribed with the Tamoxifen during my last visit. (None of the doctors had mentioned the side effects dealing with retinas before they actually gave me the medicine and the paperwork to go along with it, so I was a bit blindsided and didn't have enough information to ask in depth questions about it.)

    I do have an English speaking doctor who has been helping me with my retinas, but I'm not very happy with him. 90% of his work is just the standard prescribing glasses and stuff. I would love to find someone who truly specializes in retinas and works with them all the time, but I haven't been able to find anyone like that who also speaks English in Tokyo. I will try to set up an appointment with a eye doctor at the Cancer Institute Hospital where I've been getting all of my treatments. The only issue with this is that it takes about 90 minutes to get there on the trains and subways and I work full time, so its a bit complicated to try to schedule all of the various doctors in all of the departments on the same day.

    I'm sure I can figure it all out. I just don't want to rush into taking Tamoxifen before I have all of the information and options laid out for me. It's always been part of my treatment plan to take it, but I'm not sure if the risks are worth the rewards for me.

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  • shoppygirl
    shoppygirl Member Posts: 694
    edited February 2018

    I’m so sorry that you’re dealing with this on top of everything else. I had serious retinal detachment about a year after I started taking tamoxifen. The surgery I had was not successful in saving my eye either so I have very poor vision in my right eye. I have since switched to letrozole all as I had my ovaries removed. I have asked my retinal specialist if taking tamoxifen causedmy retina to detach but he says it didn’t. In my case it was due to my extremely poor vision. It is good that you are getting a professional opinion on the situation as I would also be very concerned as well. Good luck.

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  • nowheregirl
    nowheregirl Member Posts: 894
    edited February 2018

    I am very sorry you have to deal with this in the country where people don't speak your language. I am a 12+ year survivor living in Japan. I am Japanese so of course I speak Japanese very fluently. I really wish I could go with you to your appointments like I did when I met a Canadian woman here on BCO but Tokyo is 8 hours drive away from where I live.

    That said, I still believe I could be of some help. I could translate what you really want to ask or what you are concerned into Japanese before your appointment with your eye doctor so you could show it to him/her. Then if you could have him/her write down their answers, I could translate it for you. Or I could ask my oncologist if you still should take Tamoxifen and what you could do without taking it if you let me know the details of your diagnosis. He is a very passionate and sweet man. Let me know if there is anything I could do. You can PM me anytime!


    *edit to add some information

    I just found a case study article about branch retinal vein occlusion associated with Tamoxifen use. The eye doctors who wrote it were all from the same university which is too far from Tokyo but I found out that one of them, the lead doctor actually, now works for the hospital not too far from you. The hospital is here http://english.chibanishi-hp.or.jp/ and his name is Satoshi Iwaasa. If you are interested, make sure you ask your doctor to write a referral letter specifically to him or you could be seen by another doctor.

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  • gemPunkins
    gemPunkins Member Posts: 1
    edited August 2018

    I was diagnosed with ALH and no genetic disposition to breast cancer but to reduce my future risk, I agreed to take Tamoxifen. I started Tamoxifen in April 2018 and after seven weeks found myself in the ER being evaluated for stroke. My symptoms started after 5 weeks with light headedness, dizziness and the ER trip was promulgated by an acute on-set of extreme blurred vision that lasted 26 hours. My breast surgeon sent me to the ER because, according to her, blurred vision wasn't a side effect and she wanted me to evaluated for a stroke. Fortunately after a long night in the ER and two brain MRIs, I did not have a stroke. My follow up appointments with Ophthalmology and a Retina Specialist displayed no damage to my eyes however, my breast surgeon took me off of Tamoxifen and I now manage my risk by making healthy choices in life, diet, exercise, etc. Though the ophthalmologist(s) agreed it was likely caused by by a low toxicity level of the drug. The up side is most eye side effects (from my own personal research on this same topic) appear to be reversible if you stop taking the drug.

    I had not had previous eye issues but the acute on-set and subsequent recovery of my eye sight was scary enough to make me not want to continue the drug. Everyone reacts differently to medication, I'll assume the breast cancer risk over permanent loss of my vision...

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2018

    Dear gemPunkins,

    Welcome to the BCO community and thanks for sharing your story. We are glad that you were able to figure out the cause of your vision problems. We hope that you will stick around and let u know if there is anything that we can do to help you to make good use of the discussion boards here. The Mods

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