I was originally diagnosed Nov 05 Grade 3 2 nodes and had epicmf and mastectomy. have just gone through full recnon this year to now discover (as i was dizzy and my vision had a ‘blob’ in it) that I have mets to both eyes, I also have fluid on my lung which looks likely to be a spread there.
I saw my oncologist who confirmed the eye thing but seemed very positive that it can be successfully treated with radio. I have a CT scan on Thursday to find out where else.
I have been swearing copiously and also had a couple of drunken nights which helped. Feeling very scared but so far keeping it together. i have an 8 yr old who I intend see growing up.
Anyone with any tips on this, particularly the eyes as t seems very rare please let me know.
I’m so sorry to hear about your mets after all you’ve gone through this year. I too have mets to my left eye, liver, lung and bones and am just having hormone treatment (except had 1st bisphosphonate for bones last week).
I have flashing lights to the side of my eye and a shadow at the top. My eye oncologist says I have two 4mm tumours in my left eye and assures me they can be safely treated with radiotherapy, causing little or no damage to my sight. As they’re behaving at the moment, he is prepared to see if Arimidex will work. I go back to see him in January, unless there’s any change in my vision in the meantime. He did say that if my other oncologist decides to give me radio treatment elsewhere, then I should have the eye done at the same time. I’m petrified thinking about any future treatment as I have only had mastectomy and immediate reconstruction.
I wish you all the luck for Thursday and understand how you feel, please let me know how you get on. I do hope you manage to have a lovely Christmas with your family despite your concerns.
Have just read your posts about the eye mets. I have bone mets and am taking Arimidex and Bonefos but a couple of weeks ago I had a problem with flashing in my left eye and went to see the optician who told me that I had PVD (posterior vitreous detachment) He was very thorough with the examination and he knew that I had secondary cancer but made no comment other than to ask what medication I was taking. Because I am now 60 and this complaint is associated with middle age I was not really worried until I read your comments. Without getting myself into a panic which I think we often do, can I ask how your eye mets were dx? was it by an optician or hospital
Hi Barbara
I had the flashing lights around my left eye exactly one year ago, I went to my GP who told me to go to a good optician, where I was diagnosed, as you were, with PVD. I am the same age as you and the flashing lights disappeared and I am just left with the floaters, so I think the diagnosis was correct.
As I have diabetes and was having my 3 monthly check, I told the nurse about the recent flashing lights and floaters in my eye and she told me to visit my opticians. I had a very thorough check and was told my eyes were healthy (apart for the floaters, which is an age thing). I was not happy with this and went to my GP, who said she thought it was migraine (I didn’t have any headaches) and she referred me to the hospital. Funnily enough, my appointment was within two weeks and when I told the doctor about having had breast cancer and was undergoing other tests, he said he wanted me to have my eyes photographed and the consultant wanted to examine me. The consultant carried out an ultrasound on my left eye and said he could see a flat spot and wanted me to have a ct scan on my head. I managed to get this done the same day.
I went to see the oncologist a few days later to find out results of my head scan, bone scan, liver biopsy etc and he said he wanted a second opinion about my eye as 1 tumour had been picked up on the scan. The following week I saw an oncular oncologist and after more photos etc was told I had 2 tumours in my left eye. Apart from the flashing and floaters, I can also see a dark shadow at the top of my eye and this is a mirror image of the tumours.
I hope this has not scared you, but you can’t be too careful and thankfully I realised there was something amiss even though the optician said otherwise. Like I have already said, the onc assures me he can safely eradicate them by radiotherapy, but as they’re stable and I’m so well, it’s worth hanging on to see if the hormone treatment will work.
I would get your eyes checked if I were you just to be on the safe side, after all, it is supposed to be rare.
Good luck and let us know how you get on.
Finally, I would like to wish you all a very Merry Christmas, take care.
I don’t have eye mets but my aunt has just had treatment for a tumour in her left eye. She has had twelve days of radiotherapy and this has shrunk the tumour to almost nothing. So try not to worry too much. Radiotherapy is a good treament for this kind of thing.
i can broadly echo jens experience. I had visual migraines since May with no headache, last week i was left wih a blob, I went to the eye hospital and was told that with my history cancer was most likely. My oncologist confirmed this from a look and photos. Sue, you seem right about radio treatment - that echos what I have been told. I do not feel too worried about eyes but am more scared about where else it has spread.
A mixed day yesterday but managed to keep it together.
Thank you all for replying, I will update this link when I know more.
I hope you are ok and just wondered how you went on with the CT scan, I hope your results show no more spread. I’m thinking about you, please let us know how you are.
Sue, I hope your aunt is doing well also, it’s very encouraging to hear the radio worked.
Well back from hospital as my lung needed draining twice. Bad Xmas and New Year. The bottom line is that I have a spread to eyes, left lung pleura, two v small spots on liver and small spots on bones. Docetaxol and an experimental drug Sunitinib and bone phos thingy are to be used (the S one acts like Avastin and is tablet given) radio to eyes. All due to start within next ten days.
feeling v low but better now I know the full picture. Anyone any tips on Docetaxol (taxotare) would be gratefully received.
So bring on the treatment and lets nail this bu**er!
So sorry to hear your dx and what a crap time you are having off it lately. Wish there was something that I could say to you or do to help you through this.
Taxotere - well what can I say. I had 3 x FEC (which I sailed through with pretty much no probs whatsoever, nor any side effects that can complain about apart from hairloss), then I had 3 x taxotere. Sorry to tell you but it knocked me for six, but think I was under the impression that cos had coped so well on FEC, that would be same for tax. The first one, felt like had been hit by a bus, ached all over big time, and the mouth, well my tongue felt like an alien in there, had only few tiny ulcers but got oral thrust quite bad, so everything tasted bit yuk to begin with. Although some ladies couldn’t eat, it really didn’t stop me, first few mouthfuls were not too good, but after that was OK. My second dose ended up with me in hospital, but only because I got a bad cough/cold (prob from 4 year old), and didn’t really think about checking my temp etc, so caught it too late and my neutropenic levels had gone down to 0.08, so ended up in hospital for a week (missed my little boys 1st birthday). Mouth cleared up though with all the antibiotics! Third and last dose was reduced by 20%, as had asked for the injections but they decided just to reduce it. I also got another cold/cough and realised it was getting worse, so rang chemo ward, told to get emergency blood test and make appoint for docs. Got antibiotics from doc and when got blood results, were just getting to the borderline level, so had managed to just catch in time and avoid hospital. Think the aches did get slightly less each dose and the mouth more bearable, but that might have been cos of antibiotics in hosp.
Bet you are glad you asked. All I can say to you is, rest when you need to, and if you feel at all slightly ill, get a cold or anything, check your temp and keep checking and as soon as going up, ring chemo ward and see what they want you to do. Listen to your body as much as you can.
I hope that this helps a little. Wish there was more I could do but lets hope the treatment zaps the b******s well and truly.
Hi Jane
I can confirm that Tax is tough but it varies hugely between people. I had 8 sessions and the first 6 were pretty OK. I had a couple of days of feeling fluey after each session and my ability to taste things disappeared but apart from that life was OK. I was told not to work by my Dr because of infection risk but in fact my blood counts stayed reasonable. The last two were hard though - very tired, everything tasted disgusting, eyes watering constantly. However my breast, lung and liver tumours have shrunk by 50% so well worth it in my view!
Hi Jan,
Tax is a tough one but it worked really well for me.
I had sleeping tablets for the steriod days so I could get a good night sleep and that made a huge difference.
Something to help with the bowels and a bloody good supply of pain killers.
I had terrible boney pain part the way through but my GP got the real drugs and they worked a treat so don’t be frighted!!!
I had a lot of thrush in the mouth too and found that the lozengers worked the best for me.
I had a lot of contact with my gp which was a great help.
I was on my knees towards the end but the best part was I recovered really quickly once I finished treatment and it worked really well!!!
Thank you all for your comments. I was readmitted with a blood clot on othr lung a day after I came home - so a week on I have now had first Tax on Friday and start radio on Tueday. I feel really quite well but will be scooting to the chemist for mouth lozenges just in case tomorrow.
I was booted off the trial drug as i am now on blood thinning injections due to clot - GREAT - another skill I have learnt.
I have to say I am pleased to hear your positive comments about the effectiveness of tax, i am due 6 sessions so I hope I Iwill be OK.
Off to bed now as had no sleep in hospital for neal two weeks!!!
I hope you have caught up with your sleep and that you’re feeling much better now, you have had a rough time. Good luck also with the radio and other treatments. please let us know how you’re doing.
I did catch up on my sleep - really needed to as well!!! I did read the comments on taxotare and to say forewarned is forearmed is correct. i feel OK but had a really churny tummy last night and very achy. Took it easy today as also had radio.