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Topic: Tamoxifen and eye changes

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Apr 26, 2009 11:35PM

kayakgirl wrote:

http://www.wsoctv.com/health/13338432/detail.html

Tamoxifen for Breast Cancer

Posted: 11:08 am EDT May 17, 2007

The American Cancer Society estimates 178,480 cases of female breast cancer will be diagnosed in the U.S. this year. One treatment for breast cancer is a drug, called tamoxifen. The drug interferes with the activity of the hormone, estrogen, which fuels the growth of some breast cancer cells.

Tamoxifen has been used for roughly 25 years as a treatment for advanced breast cancer, to slow or stop the growth of cancer cells in the body. It's used as an adjuvant treatment in women who've received surgery, chemotherapy and/or radiation therapy for early stage breast cancer. For these patients, the drug is given to reduce the likelihood of recurrence or the development of cancer in the second breast. Research suggests tamoxifen may even lower the incidence of breast cancer in women who are at high risk for the disease.

Side Effects and Risks

Women who take tamoxifen are warned to watch out for potential side effects from the drug. Some patients experience hot flashes, vaginal discharge, irregular periods, headaches, dizziness, fatigue, weight loss, stomach cramps, constipation, hair thinning or depression. More serious potential side effects include: development of blood clots, worsening of endometriosis, muscle weakness, swelling in various areas of the body and an increased risk for uterine cancer and stroke.

Another concern associated with tamoxifen is the development of eye problems. The American Academy of Ophthalmology estimates 6 percent of women taking tamoxifen experience eye symptoms. Examples include cataract (cloudiness of the lens of the eye), retinopathy (damage to the blood vessels in the retina), macular edema (swelling of the central area of the retina), optic neuritis (inflammation of the optic nerve) and keratopathy (disease of the cornea). The American Optometric Association lists retinopathy, color vision problems, loss of visual acuity and visual field loss as important side effects of tamoxifen. Many patients may be unaware of problems. One study found 72 percent of patients taking low doses of tamoxifen had evidence of drug-induced deposits on their corneas. Researchers say most of the ocular side effects associated with tamoxifen appear to be reversible when the drug is discontinued. However, in rare cases, patients may experience permanent vision loss.

Tamoxifen may also have an effect on the eye's optic cup, the small, cup-like area at the back of the eye, where the retina connects to the optic nerve. In a small study, researchers from Oregon Health & Science University's Casey Eye Institute found 85 percent of women taking tamoxifen for a short period of time had a smaller optic cup size compared to a control group. The relationship between tamoxifen and optic cup size is uncertain. On the other hand, no optic cup size differences were seen among women taking tamoxifen for more than two years. Researchers would like to follow women for longer periods of time to monitor the possible relationship between tamoxifen, optic cup size and potential vision problems.

Researcher, Al Eisner, Ph.D., says women who are taking tamoxifen shouldn't discontinue the medication. However, women should be aware of the potential side effects of the drug. Patients who have concerns should speak to their health care provider and see a vision care specialist.

If you have any questions about the use of tamoxifen or any other treatment you are receiving, discuss your concerns with your health care provider.

Dx 06/2008, ILC 3.8 cm, Stage 2A, ER pos/PR pos, Her2 -,SNB with isolated tumor cell, 07/08 bilateral mastectomy with reconstruction and port inserted, 4 cycles of chemo TC x2 then AC x2 from 08/27-10/29/08, started on Tamoxifen
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Apr 27, 2009 08:45AM Member_of_the_Club wrote:

I don't think anyone should get terribly alarmed about this.  I've followed these issues closely because I have had various eye disorders throughout my adult life.  My ophthalmologist says that the retinal side effects are so rare that she has never actually seen it in her practice.  From what I understand the thing with cataracts is that if you have them to begin with, tamoxifen may accelerate them, not that tamoxifen creates them.  I had a very slight cataract going into treatment and it has definitely grown faster than it otherwise would, but so what?  It was going to get there eventually.  The ocular problems associated with tamoxifen are both rare and reversible and I think minor in the course of things.

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Apr 27, 2009 10:56PM rferraris wrote:

My opthamologist does a couple of different annual screenings because of the Tamoxifan.  My vision has been poor since I was a little girl so I'm use to going once a year for screenings.

Dx 7/13/2006, IDC, 5cm, Stage IIIB, 13/25 nodes, mets, ER+, HER2-
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Apr 30, 2009 12:37PM Susers wrote:

My vision changed on the Tamoxifen. I was always straining and needed my readers constantly. I have been off it for 3 weeks now and it is back to normal again.

Bilateral Mastectomy - Immediate Reconstruction - Cohesive Gel Implants by Mentor Dx 6/7/2007, ILC, 3cm, Stage IIB, Grade 2, 1/12 nodes, ER+/PR+
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Apr 30, 2009 01:13PM Harley44 wrote:

MOTC,

I do hope you are right... that any of these vision changes will be minor, or they will reverse after I stop taking Tamoxifen.

My current eye dr. told me that she likes her patients on Tamoxifen to get visual fields tests EVERY YEAR... I didn't know and haven't been for two years, since my insurance doesn't pay for exams, just ONE every TWO years.   My eye dr. said that Tamoxifen can cause "changes to the Macula."  The only macular changes I know anything about is  MACULAR DEGENERATION, and this causes BLINDNESS!  So, I will be going back to my eye dr. on Monday, 5/4, for visual fields tests, and a whole boat load of tests. 

I know you aren't too concerned about eye problems that could be caused by Tamoxifen, but I sure am.  I have always been very near-sighted, and I am terrified that now I may go blind, due to a (what some call SMALL LITTLE )  side effect of treatment to prevent bc recurrence...   What a trade off!! 


Harley

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Apr 30, 2009 01:59PM lisa-e wrote:

Harley, my sister is my optometrist - I absolutely trust her to tell me the truth, in part because she does not make any money when I see her professionally.  She said the risk of eye problems as a side effect of tamoxifen are very, very minor.  The benefit of tamoxifen is much greater than any risk.   Like your eye doctor, she said I should get an eye exam every year, but that I shouldn't consider not taking tamoxifen because the possible visual side effects.  

I am also very near sighted and I have been taking tamoxifen since October.   The correction I need has decreased, which my sister says is perfectly normal and a factor of aging, not tamoxifen.

Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction Dx 5/2008, DCIS, 2cm, Stage 0, Grade 3 Dx 6/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 8/2008, IDC, 1cm, Stage I, Grade 1, 0/19 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Left, Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Apr 30, 2009 04:53PM Member_of_the_Club wrote:

The macular changes linked to tamoxifen are macular edema, which is completely reversible if you stop the tamoxifen and does not lead to blindness.  Also, it is extraordinarily rare.  As I said, my ophthalmologist has never seen it in her years of practice.

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Apr 30, 2009 08:59PM Harley44 wrote:

lisa,

My Rx has changed, my eyesight has worsened while I've been on Tamoxifen.

sure, everyone says these problems are very rare... if ONE in a MILLION women who took Tamoxifen got this condition, I WOULD be that ONE!!

Harley

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Apr 30, 2009 09:30PM lisa-e wrote:

Harley, my rx increased throughout my 40s and early 50s and I started wearing graduated lenses in my early 40s.   All pre tamoxifen.  This time, I felt like my rx had changed when I saw my sister  and was really surprised to have her tell me I was over corrected.

It is good you are going to see your eye doc.  It really is awful to be so worried about something; I hope your changes are normal, not the result of tamoxifen.  I hope you let us know what your eye doc says.

Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction Dx 5/2008, DCIS, 2cm, Stage 0, Grade 3 Dx 6/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 8/2008, IDC, 1cm, Stage I, Grade 1, 0/19 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Left, Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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May 1, 2009 02:52PM Harley44 wrote:

Lisa,

Thanks!

Harley

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May 2, 2009 10:11AM peeps1111 wrote:

Hi:

My oncologist is not one to volunteer info about side effects because she knows I went into taking the tamoxifen kicking and screaming.  The only side effect she mentioned to me was that it can cause cataracts so I suspect it is a lot more than 6% or she wouldn't have mentioned it.

Peeps

Dx 6/20/2008, IDC, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR-, HER2-
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May 2, 2009 10:27AM awb wrote:

Peeps---all the literature says that the risk of cataracts from tamoxifen is less than 1%. I asked my optometrist about it and she confirmed that statistic and said it was a very rare occurence. She said just to continue eye exams every 2 years. My vision worsens slightly on every exam and therefore my eyeglass presciption changes, but that was happening even before the tamoxifen. She said that was  what happens normally with aging. I finished my 5 years of tamox last fall. I do notice that my eyes are very dry, said that was a consequence of menopause. (lost ovaries 4 years ago)

Anne

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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May 2, 2009 11:17AM Member_of_the_Club wrote:

There are varying studies on all this, some say tamoxifen does NOT cause cataracts and some say it does.  The ones that make the most sense to me say that if you already have cataracts, tamoxifen can speed them up.  As with all side effects of tamoxifen, it is difficult to tease out what is the drug and what is the normal aging process.

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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May 3, 2009 09:30PM audreynyc wrote:

Does anyone know if having had Lasik surgery helps or makes the side effects worse? I had Lasik 6 years ago. Just started Tamoxifen this week, so no changes yet.

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May 4, 2009 05:43AM Kimber wrote:

Didn't realize this was a side effect!  My vision has been terrible since on tamox!  I cannot even see the number on the phone - I have to wear readers for everything!

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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May 4, 2009 08:50AM Member_of_the_Club wrote:

I had lasik as well.  I don't think it is associated with any problems.

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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May 5, 2009 12:49AM phoenixrising wrote:

Thank you for the article.  I had severe eye problems with tamoxifen and attributed it to the tamox since they improved when I went off it.  No one knew anything about it.  2 optometrists and 1 ophthalmologist (who works out of the cancer agency) were baffled and didn't think tamox would effect my eyes.  Hopefully they've learned a thing or two since then.  I had to go off it. 

Dx 5/1/2006, IDC, 2cm, Stage IIB, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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May 5, 2009 05:11PM koshka1 wrote:

Hi ladies...

I started Tamox in May of last year,,it has been almost a year for me.....

I got severely dry eyes in December...at some times they get really uncomfortable,,,and this is not the norm for me......as I have never had this problem b4.

I am seeing an Opthamologist and will let you know what he/she says....

Hugs....

Kosh

Dx 12/2007, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jul 18, 2017 12:08PM klrsar wrote:

My Opthamologist was very concerned because Oncologists in general don't list this as a possibility. I had no idea until I handed her my revised meds list. It is important to let your eye doctor know you are taking this. I just had a field of vision test this morning. I have only been on tamoxifen for three months so they wanted to get an early read, since I will be on this for ten years.

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Jul 20, 2017 01:28AM pearlcap wrote:

After taking Tamoxifen for 2 years, I developed blurry vision and went to a ophthalmologist, who specialized in the retina. He said that he could not figure out the cause of the problem and did not think it was tamoxifen. Another two years later, my vision worsened and I went to another eye clinic, and the head ophthalmologist said that everyone on tamoxifen should see a retinal specialist since it's know to cause problems. I ended up going to a very specialized retinal ophthalmologist who told me he sees many patients on Tamoxifen with eye problems. He sent me to a eye clinic for more tests and was able to confirm it was caused by Tamoxifen. Even though I have since discontinued Tamoxifen, I still have vision problems--my guess is that this is permanent. Had I been told earlier that my vision problem was caused by Tamoxifen, I would have discontinued it right away instead of staying on a few more years.

My advice for anyone with vision problem is to make sure you are seeing the right doctor. It's not just any ophthalmologist but someone who specializes in retinal problems and has seen patients with tamoxifen problems.

Dx 8/1/2010, DCIS, Stage 0, 0/0 nodes

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