I suppose i am looking for some sort of hope out there. Diagnosed aug 08 with ibc. Had chemo double mastectomy mor chemo and radio the whole lot. Secondary found in lungs oct 09. Had chemo and in sep10 i was ned and doin well. Started with a cough nov 10 and by christmas i was convinced i had larangitus as i had a very croaky voice. Cut a long story short i had a mri of the head and several brain mets were found. There are tumours that are pressing on my vocal cords and weakens the muscles of swallowing.Starting next week with whole head radio therapy to help relieve my symptoms. My breast care nurse just said that my life expectancy is significantly less. What do they mean by that. They wont put a time on it so i have been on web sites i no i probably shouldnt have gone on and it says 3-5 month. I am 39 with a fantastic husband and 3 small chldren. Is there anyone else out there in the same situation or similar.i am quite new to this and not very good on computors ha hence the spellings. thanx pink 1
Hi Pink
My heart sank when I saw this post because its a thread no one wants to join. I was diagnosed with primary bc in 2001 aged 34 and then following a month of mild but constant headaches with a single brain met June 2009. Subsequent scans showed mets in lungs, liver and bones. My brain met was sucessfully removed and I had a course of chemo for my other mets. I was then put on letrazole which has continued to manage my systemic mets very well. Unfortunately last September I had a recurrence of my brain met and a second small area found too. Surgurey followed by localised radiotheraphy has hopefully zapped teh problem areas.
Both of my oncs (one for brain, one for rest of body) are very positive about the range of options available to me in the future. The problem with brain mets is that many of the chemos don’t cross the blood brain barrier and so does not get to them. However I have been assured that the radiotherapy is very effective at halting progression.
Pink I don’t know how to reassure you as I know how fearful you must be. Good luck with the radiotheraphy. I didn’t like the actual process although it is painless. however I did suffer bad headaches, nausia and tiredness lasting for a good month after the treatment.
Please feel free to contact me by pm if you want any more info/support.
My thoughts are with you
Louise
PS I’ve just bumped up some old discussions on this subject so you can read some expereinces of others
Thankyou for your speedy reply. I feel a bit more at ease to know there is others out there in the same situation. I will keep in touch if ok with you.I go for the mask making for radio monday and just hoping and praying it works. We all live in hope that there is a cure before we go takecare pink 1.
Hi Pink,
Take an ipod with some fav music to take your mind off the mask - its fairly hideous if you think about it too much - the staff should have a dock for an ipod. You will lose your hair although not for about 3 weeks. I only lost a band from an inch above my ears right round the back but left a mop on top that is long enough to cover the worst. Feel free to contact me any time
Louise
Hi Pink
I was diagnosed with brain mets in March 2008. Ihad surgery and gamma knife then chemotherapy. 10 months later I had more tumours so I had gamma knife again and more chemotherapy. My third recurrence at the end of 2009 I was no longer suitable for gamma knife so reluctantly agreed to WBR and more chemotherapy. WBR left me feeling very tired and I slept a lot. I have been on chemotherapy constantly for the last 19 months but generally feel well. Just waiting for latest scan results to see if chemotherapy working. I have liver mets also which seem to be under control. It’s very scarey but hopefully you’ll feel easier once treatment starts.
Take care, Gemini.
hi gemini. You have lifted my spirits.I know i shouldnt go on other sites looking how long i have but no one will tell me. I really thought i should be planning my funral but i can see a glimmer of hope. I dont care how much treatment i need they just have to keep me here for my children.I was only diagnosed a week ago so every thought you can imagine is wizzing round at the moment. I have lost my hair 3 times already so it wont be a shock this time. Go for planning of mask etc on monday. They are doin 5 rounds of wbrt but read that alot of people have had 10 so i need to ask. I do no i have quite a few all over and at the brain stem which is effecting my speech and swallowing. i just cant imagine ever eating properly again. just cant believe how quick its all come on it was only sep 10 when i got fab results and was classed as ned. I didnt realise that chemo didnt get through the blood brain vessels but have read that letrazole does thats if i spelt it right. takecare pink 1
Hi pink can’t quite believe it but I got good news from scanc today. Liver is slightly improved and no new disease in brain so plan to continue with vinorelbine and herceptin As it seems to be working. Please don’t give up at this point.
Take care Gemini xx
Hi Pink
So glad you started this thread but v sorry to hear of brain mets. I too was diagnosed with brain mets on New Years Eve following problems I’d had with vision. Initial dx in May 06 and secondaries in lungs liver bones and skin May 2010.
I am currently having 10 treatments of wole brain radxitherapy whichis horrid but if it works -and people tell me it is effective - then fine. Main thing is very weary - steroids have helped wit the headaches. I’ll then start more chemo - capecitabine and lapatinib.
Have been very encouraged coming on these boards and hearing from other ladies with brain mets and am hopefull will last a long while yet as I two have children under 10.
Keep in touch. I did ask onc about life expectancy because I am retiring early on health grounds - he said up to poss one year.
Thanks to eveyrone who posts on here.
xx
I am soooo glad of your good news gemini it is really uplifting and given me hope. It is so hard wondering what the hell is round the corner. I think the hardest thing is when we have such young children, mine are 10, 7 and 4. We have explained to my eldest daughter whats goin on roughly but the youngest 2 cant really remember me without cancer. i plan to live everyday to the fullest and put nothing off that can be done 2day. my mum lost her mum when she was onlt 8 to cancer and i know my eldest as been talking to grandma about it and i think she does get some sort of comfort from it. when i read the papers and a young mum of 3 died of swine flu i suppose any of us can go at anytime but we just have to put up a huge fight. i will keep in touch and let you know how i go on with radio takecare all and thankyou for your kind words pink 1.
Hi can I join girls,
I’m a 39 old mum if three young children. 11, 4 and 2. I found out just Friday that I have one solitary brain met 23mm in length in lower cerebral area. Consulting neuro surgeons next week re surgery if poss but warned it’s poss too risky due to position fairly deep.
I’m in bit of shock. Only dx Aug 09 and had mastectomy followed by year chemo that ended mid Sep 09. Spent my circa 12 week remission doing a personal training programme losing 2 stone steroid weight gain in three weeks. Good news I’m fighting fit and no sign if secondaries anywhere else despite being dx with liver mets last march19th.
So if u don’t mind I’ll tag along and keep you in touch. Feeling very scared for my kids particular the youngest who is my little shadow dnd may never remember her mummy.
Likewise been Reading horror stats but that’s only natural. Kinda fed up now as opposed to stressed. Need to ask bout this leroza whatever drug you talk of that reaches brain
xxxxx
keep well all
Lynn
Hi Pink and Lynn
I am sorry to read about your recent diagnoses, in addition to the valuable support you have here please feel free to call our helpline for further support and a listening ear on 0808 800 6000, the line is open 9-5 weekdays and 9-2 Sat.
BCC have published information about secondaries to the brain which you may find helpful and you can read or order a copy of this here along with a link to the specialist support we can offer you:
Take care
Lucy
Hi all,
Hope everyone is feeling more positive after a good weekend. Signet, I hope you find that the met is operable - I have had a solotary brain met removed twice now although a third has now been treated with RT. Both gamma and cyber knife are also options for brain mets although I haven’t had either. My onc is very positive about my prognosis and even when I was first diagnosed 18 months ago he gave me more than 2 years. I have been assured that the brain RT is very effective and they don’t expect to see anything in the region they treated for at least a year.
I am off to see my onc this week but am not worried about my brain more about a pain in my leg that I think is bone mets. I believe my liver is fine but we will see.
Someone mentioned letrazole - it has worked wonders on my liver mets but unfortunately did let a second brain met develop so don’t know hoe effective it is.
Hope everyone has a good week
Louise
hi signet i am so sorry you have joined us. i was at st. james leeds yesterday for my mask making for whole brain radiotherapy that starts on friday. I was diagnosd with ibc in aug 08. Had double masectomy, chem, radio had 7 months grace then it was back on my lungs. Had taxol and carboplatin and sep 10 i was classed as no evidence of disease. Started with a hoarse throat 17th dec went to see oncologist inbetwen xmas and new year. Difficulties in swallowing and loosing control down my left side. Had mri of head and results were i have several brain mets that are pushing on nerves that control swallowing and voice. This hit me like a ton of bricks i can tell you because i hadnt had any of the signs like headaches, dizziness etc but i have now. Cudnt believe i cud go from good results then 3 months later to this. I too have children similar ages to your. Girl at 11 who we have told briefly because we thought if we didnt tll her she would read into it anyway. I hav a boy who is 7 and a girl at 4. It scares me to think that the younger 2 just wont remember me. I have started memory boxes just to help build something up that will help them.please kep in touch pink 1
Hi Pink, poor you having that nasty mask fitted. I get MRI tomorrow to confirm I have onesolitary met then hear Friday if they’ll operate. They know I’m claustrophobic and onc said I may not have to wear mask due to location of the met anyway. I’m just feeling bit empty and pointless not sure what to do with myself really.
I too am so sad to think that my youngest two will have no memories of me except in pictures and film. I am such a doting mumand sadly thier dad is not an affectionate type so I fear greatly for them afterward. They turn to me for everything in life. Terrified of never seeing them again. It’s just too sad. My eldest is a sound little lad and fully knows what we are facing!
Anyway I’ll keep u in touch with my progress and good luck pink x my heart goes out to you
Hi Pink1,
I have not been on the site for about a month, however my wife has a secondary brain met for a year now being controlled by Herceptin. There have been issues with it as can be read under “Advice please” in the Secondaries: treatments & medical issues section but it is at least being controlled for the foreseeable future. Yes - the stats are terrifying, but everyone is an individual and has a unique experience as this site shows
thanx sossages. i hav only just started on the road of wbrt which starts tomorrow. the stats are terrifing and probably the worst thing i could have done but when your diagnosed you just want answers. Is your wife her2+. i am triple negative and dont think herceptin will work. its nice to hear that people are responding to radio and chemo and managing to get on with their lives.i am goin to fight this i’m not ready to go yet the husband needs some more training with the kids ha. thanx pink 1
Hi Pink 1,
My wife’s primaries were / are triple neg. but secondaries Her 2+. Click on my profile for full info.
regards
Hi girls I had MRI today and find out Friday whether they can uperate. From ladies who have had an op is it all done fairly immediately and how long are you in ITU afterwards xxx do they start radio quite fast after surgery too!? I get feeling I’m getting whisked to Edinburgh next week once decisions have been made fri x
Just an update. Not a great week. Got call to say I’ve finally cme to top of waiting list to have final breast op, mini uplift, nipple done and son tags removed from recon year ago, at golden jubilee hospital. Glasgow which is five star! Wouldve been a nice treat but thanks to nhs waiting times it’s come just as my brain mets arrive.
Also got abnrmal smEar result and to attend clposcopy clinic in next 8 weeks.
Sorry bout typos in car at mo xxx
hope all doing well and take care xxxxx
Hi signet,
Can’t really help with breast op decision but with regards to brain op, i came through both times very easily. My met was at the back of my head. The op took about 3 hours and I was woken up in recovery and kept there for 4 hours instead of going to ITU. I then went back to the ward and was sitting up having tea and biscuits the same evening. I had little pain and was out after 2 nights. Certainly my reconstructions have been much more painful than brain ops. I have an s shaped scar behind my ear and that small area was shaved.
My RT started 3 weeks later and mine was only at the back not WBRT but I found it tough - headaches, sickness and tiredness. Please ask away if yo have anymore questions
Take care
louise