Anyone with lungs, liver & brain secondaries?

Hi Everyone,
Last week I was diagnosed with secondaries to my lungs & liver. Today a brain scan has shown that I also have lesions in my brain. I started chemo & herceptin on Monday & am due to start radiotherapy on Friday. As you can probably imagine, my prognosis is not good. I was wondering if anybody else is in a similar situation? I would also be interested to hear if any treatments have been successful. In fact any advice would be very useful to me. I guess I am just hoping to hear some positive stories as I can’t get my head round it, I am only 34.
Thankyou for listening, Lisa x

Hi Lisa,

So sorry to hear of your diagnosis. I have put for you below links to some of our publications which may help.

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Take care. Kind regards,
Jo, Facilitator

I’m so sorry to hear about your diagnosis and can not offer any personal experience but I would like to tell you about a lovely friend of mine that passed away last week. She was 89 and was first dx with breast cancer at the end of the 70’s with the first of many secondaries at the end of the 80s. 2 Weeks ago, when I had some scan results that need following up, she said to keep faith (be it in god or in myself(yourself!)), be positive and try and have a laugh but remember to cry… A lot of time and operations passed and she lived every day to the full in case it was her last. I really hope that things can be managed successfully for you and have everything crossed.
Please take care of yourself, I hope you have the emotional and practical support behind you that you need.
Katie x x x

Lisa I’m so sorry to hear your news. Have you been offered gamma knife as an alternative to whole brain radiotherapy? Gamma is a non invasive treatment and is sometimes suitable if you have a small number of mets.
Good Luck with your treatment…I will bring up Kitkat’s brain diary posts for you…after this post. Although Kitkat is no longer here she had a fantastic, really great response to her brain rads but she sadly died from other complications well after her treatment. You may find reading her posts a help…but if you would prefer not to read right now skip my next 2 posts.
Take Care Lisa…xxxx

For Lisa, Kitkat’s Brain Diaries Part 1.

Brain Diary Hi All
I’ve decided to impose on you all my lovely journey through brain mets as there didn’t seem anyone out there who’s done it recently/firsthand. Don’t want to scare, rather to reassure, so if you don’t want to read, stop now!

As you may know, saw the doc last week who confirmed brain mets. Hospital called Tues ( week later) for me to go in Thurs for mask and simulator for whole brain radiotherapy. Have to say, VERY impressed at speed of NHS here, also slightly scared that they felt it necessary to do it so quickly!

Mask was fine! I was worried I’d feel claustrophobic, but it was a bit like having a a warm string vest put over my face! It was only on for about 5 mins and then cooled down. Then they clip you down on the table, but the radio is only about 6 mins total, so I can do that! Easy! No tattoos as they draw on the mask!

She also showed me the MRI films and the mets were very small white spots. About 6 or 7 dotted around, but lower in the brain than I had thought. Not many in the top bit, and one a bit alarmingly near my optic nerve, but she reckons this radio will stop it inflicting any damage.

The radio will hopefully reduce them but, as usual, won’t get rid of them. Whether they recur is apparently dependent on what happens elsewhere in me, but as liver and bones seems stable for now, fingers crossed.
I start next Tues, 10 sessions over 2 weeks. Hair will go patchy and thin again, but it may not come back this time. Still, rather be here and bald, than hairy and not!

Feel so much better now its all going ahead and I can deal with it! Been working out driving rota and babysitting rota today.
Driving by the way, is off for the ‘forseeable’. basically if I ever want to drive again, the doc would need to fill in a form for the DVLA. Just going to have to get used to it, and use taxis and buses etc.

Was a bit concerned that this would in some way change me, my personality, but just going to have to try it and see. Surgery is not an option cos there are just too many.
Steroids seem to be stopping headaches and clumsiness, still a bit woozy but think thats the steroids themselves! Plus, they give me thrush so mouth back to cardboard and weight dropping off again. Mind you, I’ve got plenty to lose so no worries there!
Anyway, think thats all for now, let you know how its going next week.
Love Kitkat

Brain Diary Part 2 Hi Everyone,
I’m back! 4 whole brain radiotherapy treatments done, 6 to go and not feeling too bad!
It’s a very strange experience when you actually have the radiotherapy. When I’ve had it before on my boob and back, there is no smell, no lights just buzzes. This time there is a definite smell, kind of burning but not really, they call it ionising apparently, but my friend whose been driving me noticed it in the car! It also flashes a kind of blue light at the back of my eyes which has baffled them as its not supposed to! I think it must just be zapping a particular nerve in there somewhere! Its so quick though that I don’t have time to worry. I have to say that by the end of it, I’ll be glad to finish!
I’m feeling more weary today, and had a bit of a funny ear last night which is all down to swelling in my poor head. I do feel a bit like a bit of bacon! Hair still there, but scalp definitely feeling tingly kind of pre hair fall out feeling for those who’ve had chemo.
Anyway, will have a good sleepy weekend. My poor Mum has been away on holiday since all this kicked off and knows nothing about it, because I so wanted her to have a good holiday, so thats all about to hit the fan this evening. I hope she’ll forgive me.
Hope everyones doing ok
speak to you when I can
lots of love Kitkat

2nd part of Kitkat’s brain diaries

A new bike for Christmas Hi all

wanted to tell you all about my early xmas pressie as I’m so excited and proud of myself!

I got a big shiny purple bike! With lots of comfortable padding and good suspension for my poor ole bones.
Been out with hubby and son and did 2 miles and felt really brilliant and alive! Fantastic, and its exercise and a bit of independence as I can’t drive.

Would definitely recommend it despite my mothers worries about my bone mets!

Loe Kitkat (exhausted but happy)

More Good News from me too! I wanted to share my good news too with everyone as sometimes we forget there is hope!
I’ve recently had CT scans on brain, abdomen, neck, pelvis and there is NO EVIDENCE OF METS !!! For those who don’t know I had liver mets and multiple brain mets (see profile) and am so overjoyed I can’t quite take it in. My onc said he was pleasantly surpised as he had expected there to be some activity!!!
I do still need to have bone scan as he thinks any cancer activity here might be the cause of my recent anaemia but I can deal with bone mets! Its not the bone mets that see you off is it.
Feel like the huge cloud I’ve carried around has been lifted, for a little while anyway.
So don’t give up, hope my news cheers you as much as it has me!
With love

Hi Lisa, sorry to hear your latest results. I have brain and liver mets and have had Gamma Knife twice. The first treatment was successful and I’m currently waiting to see how the second treatment went. The spread to my brain first happened in early 2008 and although I’m having chemotherapy at the moment I am relatively well and still able to do the things I want to do. Maybe ask if Gamma Knife would be an option for you and also that the chemotherapy you’re having will get into the brain too.

Take care, Gemini.

Thankyou so much for your kind responses. They have been very helpful. I am really interested in the gamma knife treatment that has been mentioned. I wonder if this would be suitable for me? I would love to hear more about this. What is the criteria? Would it be suitable for me as I have been told I have a quite a few lesions. Sorry for all the questions. I am off to research this with urgency as I am due to start radiotherapy tomorrow.
Thankyou again,
Lisa x

Hi Lisa, I’m not sure where in the country you are but there are 2 hospitals in London that do Gamma Knife, one in Sheffield ( where I went ) and now one in Leeds too. Not too sure about the criteria but the first time I had 2 lesions treated and the second time just one. I wonder if radiotherapy could be delayed until you’ve at least had chance to explore whether Gamma Knife would be an option. The treatment is all done in one day and I didn’t suffer any after effects. In fact I was well enough to go to a party the following day. The Sheffield Hallamshire hospital has a website showing exactly what happens. Hope this helps, best wishes, Gemini.

Hi Gemini,
I live in Preston, Lancashire but I would be willing to travel to any hospital in the country if this treatment would be an option for me. I will check out the Sheffield hospital website for more details. Thankyou very much for your advice,
Lisa x

Hi all
I haven’t been on the forums since 2001 when I was first diagnosed at 34. After chemo, radiotherapy and tamoxifen for 5 years, I basically got on with my life, even moving abroad with my husband to work. Then in June after a continuous mild headache I was diagnosed with secondaries in my brain, liver, lungs and bones. The past 5 months have been like rollercoaster that I want to get off. Treatrment started with incredible speed. The metastatic cyst thankfully was successfully removed from my brain and teh rest treated with chemo. I’m now on letrazole and waiting to find out if this has stabalised things. my oncologist seems very positive that he can control this for several years - but of course can’t get rid of it! Fortunately I was very fit before treatment and not suffering from any symptoms from the stuff in my liver, lungs or bones, just a constant headache which thankfully has gone now… But it has brought me up short, like hitting a brick wall at 100mph. I’m so angry at the cancer for what it has taken from me, and also struggling with how I ‘get on with life’ yet face an uncertain future.

Hi Lisa,
so sorry to hear of your diagnosis. You must be very worried and scared. My Mum was diagnosed exactly this time last year with secondaries in her bone, lung and brain. She started with 10 sessions of WBR and taxol & avastin which resulted in 90% reduction in her brain, 70% in her lung and no sign of anything in her bones. Unfortunately in September she lost the movement in her right eye and it was discovered her brain mets were back with avengence. 2 weeks ago she received gamma knife surgery to 40, yes FOURTY tumors!!! She had this done at The Cromwell hospital in London (Sheffield refused to treat her due to the number of tumors she has). We were told she is a unique case as they have never treated anyone with that many tumors before (and the professors at the Cromwell are the leading experts in gamma knife) but if they hadn’t offered her this treatment there would have been no hope for her at this progressed stage. It is too soon to tell yet whether the treatment has worked. It is quite a fascinating procedure and in a patient with a small number of tumors is said to be 90% effective.

I hope you are able to find out if this is an option for you, however Mums WBR was very effective at the time and she had very few side effects. The gamma knife has knocked her for 6, although she did have a lot of it!

If I can offer any more advice or answer your questions on brain or gamma, just ask.

Good luck with everything and keep smiling!

Sunnybear x

hi lisa

i’m just diagnosed with brain and lung mets and started tbr on friday - absolutely petrified as these have progressed while i’ve been on chemo and the new ‘wonder drug’ lapatinib

would like to know how you’re doing and what is going on for you and to keep in touch while we’re on same path?

hope you don’t mind


Hi Hannah,
I’m so sorry to hear of your recent diagnosis.
I am doing ok. I have had 10 sessions of WBR in Dec & didn’t suffer too bad with side effects. I started with dizzy spells a few weeks ago so I am having a scan 20th March on my brain to see what was going on although all my symptoms seem to have disappeared(???)
I am having oral Navelbine weekly & Herceptin every 3 weeks. My last scan showed that my liver was stable & 2 tumors in my lungs were only slightly bigger. My onc seemed to think this was quite good news.
Do you know what other treatment you will be having? Will your onc change your chemo?
Keep in touch
Lisa x

thanks lisa - i’m really struggling with all this lately, just can’t see any hope and hate going through it all, it’s not like me at all to be like this

I will be started on a new chemo but don’t know what yet or when - navelbine and herceptin and lapatinib and capecitabine haven’t worked for me so god knows what she’ll do

let me know how your brain scan goes - how many tumours did you have and how big? i’ve got 6 and they are ‘cm’s’

thanks lisa


Hi Hannah,
I know how you feel & it is nice to talk to someone in a similar situation.
I have 10 tumors in my liver, 6 in my lungs & 5 in my brain. I don’t know how big they were but the only symptoms I was getting was flashing lights. I’ll find out more hopefully after my next scan.
How are you coping with the WBR?
Lisa x

hi lisa

5 down, 5 to go - absolutely hating it at the moment, it’s all psychological with me I just hate the whole idea of it, the mask and going there everyday and everything. not like me at all, i normally get my head around most things. got a strange metalic taste in my mouth today - is that related?

want it to work so much - so have they left 3 months before your brain scan since the rads, i was wondering how long it would be till you know how well it’s worked - sounds really promising that your symptoms have gone

i hope all our treatment works well for us, will be thinking of you on 20th


Hi Hannah,
You must only have a couple of WBR sessions left hope you are coping ok.
I originally had a brain scan in Nov because I was seeing flashing lights. I had no other symptoms but the scan showed 5 tumors in my brain. My onc said that I would not have anymore scans on my brain after WBR unless I developed more symptoms. I thought this was a bit strange. I don’t know whether this is common practice. How can they monitor what is going on if they don’t scan my brain? The only reason I am having another scan is because I got ill & had lots of headaches & dizzy spells & the flashing lights came back. My symptoms seem to have gone now though so maybe it wasn’t related to my brain afterall??? I guess I’ll have to wait & see what the scan shows on Saturday.
Lisa x