Hi everyone. I’ve not been around for a few months, been recovering from brain surgery/WHRT. I’m looking
for anyone who has brain mets, I’d like to know your thoughts and experience. I’m in my forties and have two girls aged 13 and 14.
PaulaD
Hi Paula
I was diagnosed with brain mets in February after 2 previous goes at breast cancer - ran out of breasts so it had to appear somewhere else! Had radiotherapy and steroids but no surgery. I’m 56 with a 16yr old boy doing GCSEs.
Ask away what you want to know!
Love Lynn
I had just spotted your new thread on the way to bed, so sorry about the short note, but it’s Friday morning now, so I’ve more time.
I had my 1st breast cancer in November 2003: A stage 3 cluster of tumors treated with lumpectomy (but not enough clearance), mastectomy, FEC and radiotherapy. All clear and back to work after 10 months (this was delayed by a nasty infection in the mastectomy wound).
Then in May 2006 I found a strange swelling under my rib cage which turned out to be the 1st manifestation of Inflammatory Breast Cancer. By the time all the tests were in this was spreading across my chest and back like wildfire but was stopped in its tracks by taxotere and herceptin. I was admitted to hospital with septicemia 10 days after the 1st taxotere, as the treatment gave me neutropenia every time, but I could see it was working. I had a 2nd mastestomy, followed by a seroma (fluid in the wound) and then another infection. But the pathology tests after the mastectomy showed that the IBC had completely gone, which was brilliant! Back to work again in February 2007.
I continued to have herceptin every 3 weeks but towards the end of 2007 began to feel generally under par, and went back to the doctors. Nothing showed up, but when I got my November blood test results on 21st December (done every time I had herceptin) the tumor marker had risen. The December results showed a further rise, so I went back to the oncologist & had a body scan, but nothing showed up. I was convinced that the cancer was back, but just not showing itself yet.
Then I started to feel dizzy and sick, went to my GP who immediately said that brain mets would explain everything. He referred me to the oncologist who I saw the next day and was immediately admitted the hospital and given steroids. Transferred to the Norfolk & Norwich the next day, as they can do all the treatments I needed. Had a brain scan which confirmed 3 brain mets, and put on fluids and 16 steroids a day. The steroids reduced the brain swelling enough to stop the sickness and 3 days later I started 5 doses of WBR. I had lost a stone in weight, mostly leg muscle, and was so weak I could hardly walk, but after 10 days in hospital I was much better and they let me go. The steroids have now been reduced to just 2mg of dexamethasone every day, my muscles are building up again, although most of the stone I’ve put back on seems to be on my stomach and face - but that’s one of the joys of steroids!
I wasn’t having Herceptin while all this was going on, so a couple of weeks after coming out of hospital I developed breast lumps, and am now back on herceptin to keep them under control, although the onc doesn’t seem to think that they are a big problem - at least compared to the brain mets.
I’ve been through the ‘I’m going to die!!!’ stage - but I’ve already been through that twice previously. I’ve done the practical stuff - made a will, claimed on my terminal illness insurance, claimed Disability Living Allowance & Carers Allowance for my husband, sent back my driving licence, etc. Now I’m coming to terms with the fact that it looks like I will always have problems walking (it’s as if my legs are drunk and won’t reliably obey instructions), and my energy levels are very low - I seem to spend more that half my life in bed, and most of that time asleep. I have lots of minor irritations from the steroids - bleeding nose, upset stomach, etc & still no hair! But all in all things are going very well and I have the most wonderful support system from family, friends & work…
I’m going swimming now - wonderful exercise for anyone with balance problems, but will write more later.
What’s your story?
Lots of love,
Lynn
Hi Paula and Lynne
I was dx with bc oct 07 at 38 then found out the following week it had spread with mets in lymphnodes neck and arms, bone met in rib and small liver mets, put on taxotere and herceptin tax stopped in feb but still on herceptin. About 3 weeks ago started to have problem with eye and was dx with small tumour above pituarity gland (spelling?). Have 3 kids 14,11,and 9 I have been really emotional. (not told kids)
Have got a holiday booked in 6 weeks time to spain and don’t now wether to fly, any thoughts? Had to cancel last year when dx with bc, don’t want to let kids down again, Onc says it should be fine but really unsure if I should.
take care
liz x
Hi Liz
I am sorry to read of your recent diagnosis. If you’d like to talk this through with someone please give the BCC helpline a call, here you are able to share your fears and concerns with a trained member of staff who can offer you a ‘listening ear’ as well as support and advice. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.
I hope this is helpful.
Best wishes
Sam
Hi Liz,
Do you mind me asking what happened with your eye?
Alli x
Hi Every body, out of brain tumour mets … i have to go to onlg next week to find out rest of radio … i have mets to or had dont no what to do …sophie
Hi Alli
I had routine eye test in January of this year and eyes had not changed since 2002, but about 5 weeks ago I noticed my left eye felt cloudy in corner, as i did not finish taxotere until end of feb and my eyes had both been a bit weird afterwards I thought it was still a side effect of Taxotere, but over next couple of weeks and with covering my right eye I realised it was getting worse. It wasn’t until i went to opticians and had a recheck that I realised just how bad my vision had become. Got sent back to docs, to eye hospital to rule out any eye probs then had MRI. In middle of 2 weeks of Rads.
Hi Sophie
Hope your doing O.K
Take care Liz x
Hi All
I was dx ibc 31may 07 had chemo, radical masect, radiotherapy and on 17th march 08 was dx with brain mets. had 10 whole brain rads loads of steroids am also getting zoladex herceptin and aromasin. i am in hospital at the minute as herceptin not agreeing with me.I am 34 with a boy of nine. sorry about the typing but these hospital keypads are soooo tiny.
take care
Angelaxxxx
Hi Angela
Sorry to hear your in hospital I hope you get herceptin sorted out, I think I had trouble after my last herceptin cos it was the first time it had been allowed to go through in 30 mins, but nothing confirmed as at same time all this eye/brain stuff started.
Is anyone near Liverpool?
If you dont mind me asking Angie how much have you told your son? My two older kids are in the middle of exams, dont know if I’m doing the right thing in not telling them whats happening cos its obvious something is but also really unsure as to tell my 9 year old as much as I tell the other 2.
All Take Care
Liz x
Hi
I was dx Apr05 with bc which had spread to liver. Did FEC, then herceptin and arimidex. Well until Jan 08 when brain mets diagnosed. Had WBR, then one set of xeloda, but ended up in hospital 7 weeks ago - lost use of left leg and now diabetic due to steroids.
Currently in hospice being cared for very well. Main issue is not being to stand but still have a good quality of life. Now aged 44 with a 10 year old.
Hard to give advice re telling children. We’ve always told her everything at a level she understands. At the end of the day, you know your child best.All that I cfan add is that they’re a lot more resilient than we appreciate.
Wishing strength to all fellow sufferes.
Busty xxx
Hi Busty
I have decided to be honest with kids will speak to them next week I am dreading it but it needs doing.
The thing that really bugs me is that they say brain met is not new i think it would have been better to know at the start. Still cant get over the fact that they dont scan brain initially. My best friend was dx in May 99 had mastectomy, chemo, rads finished treatment in January 2000 and died in July 2000 it was awful to see her go through everything only to be told brain met must have been there at start, pointless.
I asked for brain scan cos of this but was assured it was very rare for this to happen to me but it did.
thanks for wishing strength, you to.
Liz x
Hi
I have just been told that i have Choroidal Metastasis I was sent to eye specialist 4 weeks ago after noticing that my vision was getting worse in my left eye.He done ultra scans and took photos and told me at the time it could be either a melanoma in the eye or a spread from Breast Cancer This was not something i had even thought about The change in photos in the 3 weeks indicated that it was a spread . I have been sent for CT Scan of the chest abdomen and pelvis and Brain and am waiting for the results of these I am to start chemotherapy next week Capecitabine (Xeloda)
I still cant take it in and want to believe that maybe they have got it wrong
Best wishes to everyone
Ella xxx
Hi Ella
Sorry to hear about you dx I know what you mean about not being able to take it in. When I found out I had secondaries I imagined all kinds of possible situations but not about losing my sight. My right eye is fine but if it was as bad as my left I would really struggle.
Take care
Liz x
Liz and Ella - Hi - I had extensive mets to both eyes in January which is unfortunately rarely a spread on its own. However, the eyes were treated very succesfully using rads…I have since seen an oncology opthalmist who confirmed as they usually get that only scar tissue left…no effect on sight at all.
Eyes sounds awful but actually was OK… thought I would let you know as it is very scary.
Jan xx
Hi Paula and everyone else, Hope you are having a good day today, from what I hear, the weather over there is pretty good. (I live in Queensland Australia, its a cold winter this year even have to wear a jumper in between hot flushes! I have had 2 tumors removed from my head, one golfball sized by surgery the other tiny 5mm by gamma knife. go to nuro tomorrow to get results of latest MRI. Have been living with cancer for 3 and a half years now. Saw my breast surgeon a month ago (even though I dont have any?) he is now screening women from head to toe! (all because of little ol me) and obviously there are alot more of us. I too felt ripped off that I didnt know about it right from the start, as it had spread to my brain probably before I was dx. Just blessed that I didnt kill my kids in the car minutes before a huge siezure.
Anyway, Im off to sleep now, still get so tired even though I had the gamma knife treatment before christmas last year!
Love to you all, Suzy (aged 42)
Hi Suzy
I’m glad to hear your surgeon is now screening women head to toe. I think it should always be the case. Can I ask if you have flew with brain mets?
Take care
Liz x
Hi I was dx with brain mets on 3rd June, had 10 session WBR, and yep I manged to fly out to Majorca for a very restful 10days on the 28th June , My Onc thought the Holiday would be good for me, well beats being depressed at home. I just had to take 4mg of Dex for the flights and all was fine. It was so good to get away form the constant bad news, now in lungs bones and liver. all this has happened in 6 weeks, a bit mind blowing but trying to stay as up beat as possible… Losing the car is such a blow, never realised how much I used it!!! start on Tax next week a little edgy after reading posts, any advice much appreciated,
Hi
Thanks for letting me know about flying I’m very releived.
Really sorry to hear about your dx. I was on taxotere can’t compare it to any others as it was the only chemo I’ve had. Not nice(sorry) but do-able, found first few Ok just low white blood count for which I had injection and aches, found sleepless nites the worse but prob due to steroids was offered sleeping pills looking back dont know why I did’nt take them. Last two were worse but as nearly over that helped. I would use loads of nail cream managed to save all nails bit brown but ok now. I used almond oil on my nails (loads of it very greasy but good. Hope your treatment works well for you. (just reading over that sorry it doesnt say anything better but i also know people have carried on working with it) Thinking of you.
Take care andd lets know how you get on
Liz x
Gosh! I’ve only just realised I got so many replies and they are all very helpful to me. Thank you everyone.
PaulaD