Hi Kate,

A very warm welcome to our forum. 

I am sorry to hear that you've been having trouble with your eyes following your treatment. Can I ask what symptoms you have? 

I have had 2 bouts of breast cancer - the first was diagnosed 13 years ago and the second 12 years ago. I had a lumpectomy and took Tamoxifen initially, then had a double mastectomy, followed by Letrozole for 6 and a half years. I developed catarracts in both eyes with the Letrozole. Two years after these were operated on, I developed complications as a result of these operations. I lost the sight almost completely in one eye and was gradually losing it in the other. I was at the stage of using a low vision magnifier to see anything and had to stop driving. I have now had 7 eye operations and feel so fortunate, that I am now restored to 20/20 vision and am back to driving again.

There is indeed a link to eye problems that are caused by Letrozole. I do hope that your problems settle with time.

Kind regards,

Jolamine xx

Hi Jolamine,

Thanks for replying.

You have been through so much! - I am very happy for you that your eyesight has now returned - how wonderful!

I just noticed a few weeks ago, while out walking that my sight was weird - kind of blurry/refracted in my left eye. Later I realised I could no longer focus, while reading, with this eye. Previously I had very good sight for reading, as I'm slightly short sighted (don't need reading glasses, evcen though I've just turned sixty six). Now I can't read with this eye and can't see distances with it either, even with my glasses.So, now my glasses are no longer of any use and I can't go out and order new ones until the eye 'settles down' (it seems to fluctuate). I had lazer eye surgery, probably about 25 years ago now, to correct short sight.

Now I've been to the the eye hospital and they have looked at my eyes with all the equipment available and I've been told they cannot 'see anything to worry about' at the back of my eye etc. and cannot really offer any explanation. They will see me again in six months.

The eye specialist who examined me said, in her opinion, it was more likey to be a late effect of chemo (in particular EPC chemo). She had not heard of Letrozole affecting eye sight. However, there are plenty of studies out there saying that AI's (including Letrozole) can cause damage to the eyes in a small minority of people. I'm wondering if I'm in that minority due to having the lazer eyes surgery so many years ago (it was a fairly new thing back then and I think it has improved in recent years). I think my eyes were damaged by the lazer eye surgery. Now, perhaps, chemo - and/or Letrozole - are more likely to cause more damage if there is a pre-existing weakness in the eye (?).

This all leaves me in the difficult situation of not knowing, for sure, what has caused it - and whether I should not be taking Letrozole or not to protect my eyes from further damage. The BC nurse has instructed me to come off the Letrozole for a month or so anyway.

In the meantime my sight is pretty badly impaired, which is both inconvenient and worrying.

It seems not all the various different specialist consultants are up-to-speed on latest studies (how could they be? - they have enough to keep them busy). Still, it can be very confusing getting different responses from different consultants. We're told not to use the internet to look up symptoms too much - as it can cause unnecessary worry etc. (and it can be very misleading and cause unnecessary worry) but what can you do when you are getting no answers about troubling symptoms from the oncologist consultants etc?

Kind regards,

Kate

Hi Kate,

This sounds very like my symptoms. I have always been very short sighted and had to wear glasses from the age of 2. I didn't have radiotherapy or chemo, only Tamoxifen for 1 year, then Letrozole after that. My sight deteriorated very quickly, half way through taking the Letrozole. I first became aware of the blurriness, everything looked dull and I had difficulty in focussing. I then noticed an increase in the number of floaters and found it impossible to read. 

I had cataracts removed from both eyes and for the first year, my eyesight was better than it had ever been in my left eye, but I couldn't focus properly in my right. This was because the lens that was inserted to check my astigmatism, was 25% out.  I had another operation to sort this and my sight was great. Then, the same symptoms began to appear again. This time they were much worse until eventually, I could hardly see anything with my right eye and the left was going the same way. This was attributed to a complication of the cataract surgery, where I had developed PCO (Posterior Capsular Opacification). This felt as if the cataracts were returning, as my vision became very blurry again. I had to stop driving, stop work, couldn't see TV, sew, knit, use the computer, etc. I had to wait for nearly 2 years to get corrective laser surgery for this. To restore this "secondary cataract." a laser is used to create a hole in the cloudy bag (posterior capsulotomy). I also have another complication from the surgery, where I have been left with high eye pressures (glaucoma). As a result, I need to have close follow up by the ophthalmic department and at my optician. I also need to apply eye drops daily.

I appreciate that this could all be part of the natural aging process, but my consultant and optician seem pretty sure that this developed as a result of my cancer treatment. It was bad enough dealing with 2 bouts of cancer, but not being able to see as well, really was a double whammy. I also had to have both knees replaced as a result of taking Letrozole. These were carried out between my eye operations. I am self-employed, so not being able to work hit me hard too. I really feel so fortunate to have had my sight restored, as it has given me my life back again.

Have you discussed this with your breast care nurse or consultant? My breast care nurse was very helpful when I mentioned this to her. 

There are so many different facets associated with cancer treatments that it would be impossible for all consultants to be up-to-speed on them all. However, I have found my team very willing to seek advice, when they have found their ow knowledge of a subject lacking. I agree that using the internet is never a good idea, as a lot of the information there is poorly researched, out of date and aimed at the more spectacular cases. This can be unnecessarily scary.

I'm sorry for the long diatribe, but I hope that this shows you that, if your sight continues to deteriorate, something can be done to rectify the matter.

Kind regards,

Jolamine xx

Hi Joalimine,

Not a long 'diatribe' at all, but  all very interesting and helpful to me going forward. It is also really helpful and re-assuring to hear that, eventually, your eyesight was restored.

One of the worst/most disturbing aspects of suffering all these side effects is that sometimes you may not feel that people are believing you, or listenng to you. This can add to the distress that is caused by  symptoms.

I've found good eyedrops helpful so far. Also, not using the computer too much! ...my eye seemed to be improving a little bit yesterday - but bad again this morning...

I will keep in mind the information you've provided. Thank you very mech! :-)

Best wishes,

Kate

Hi Kate,

I am glad to hear that you have found this of some use. The main thing is to know that it can be rectified, so don't panic.

Please keep in touch and let us know how you get on.

Kind regards,

Jolamine xx

Hi Kate,

When the chance of recurrence is so small, it hardly seems worth it. I was told that mine was only 3% and the only reason that I completed the course was that I didn't have radiotherapy (2% with both AI + RT) or chemo. Please let us know what you discover about naturally occurring AIs - your consultant should be able to refer you to see about these.

Kind regards,

Jolamine xx

Hi Jolamine,

I'm actually totally confused by all the stats! Going to have to do more rersearch...

I don't think any of the consultants I see (named one keeps changing) would know about, or condone, such things. I think they always prefer the drugs. I am trying to get to talk to an 'integrative doctor' via the Penny Brohn organisation...

Best,

Katie xx

Hi Katie,

Not many consultants condone any 'alternative or homoeopathic therapies', despite the fact that allopathic drugs can cause as many, if not more, side-effects.

I'm interseted to hear how you get on. Please keep in touch.

Kind regards,

Jolamine xx