Brain METS and scared

[Olives]

Bump

[Sarahb51]

Hi Hilsy you're quite right feel much better now everything is ready. At least I've only got the one bit to fight! Thanks again and have a lovely weekend x

[Hilsy]

You're so welcome Sarah, I know what a lonely awful time it is and hearing from anyone in a similar situation helps somehow. It's great you have no other spread but there are other options as well if that does happen. I'm unfortunate as it all kicked off at once but stil trying to keep positive as in not ready to give into it all yet! You'll feel so much more confident after rads as things are being done....the waiting for treatment is the worst part coz you feel you're losing but you're not. And you will be here for xmas I promise you that! Though of course you'll have wobbles, I do and they're horrid, just as long as you emerge after!!! X

[Sarahb51]

Hi Hilsy thanks that's really helpful. It's 2cm x3cm but found out today surgery would be too risky. So I start rad on Monday for 2 weeks. The steroids have been fab and yes I couldn't care less what I look like! Must admit I had a bit of a wobble this eve wondering if I'd still be here for chrimbo but over that now and in fight mode! Rest of my bod is clear at the mo which is brill. Can't thank you enough for your post what a difference it makes when you realise you're not alone. Hope you continue to do well xx

[Hilsy]

Hi Sarah I'm so sorry about your news. Have they told you how big the tunour is? As you can see nine was 2.7 cm and caused the odd migraine and neck pain and other than that I had no clue! They removed it and did radiotherapy, targeted. They'd also found Id developed lung mets. It was doable and I got through it. My news isn't encouraging on me so I don't want to dishearten you but can't ignore you, but mine grew back where it was and is about 1cm 7 weeks after end of radiotherapy and spread to my liver. At the mo im on second cycle of capecitebine oral chemo and had 3 doses of herceptin as they hope itll shrink tumours for them to do gamma knife or similar on the brain met as they wont do it at the mo die to extent or disease so I have to wait to see if drugs work! Anyway, when first diagnosed with the 2.7 met I was out on 8mg steroids per day then 16mg and now I'm on 6mg per day (you just can't be vain on steroids on now big with a massive moon face and now neck)! Your steroids will defo be sorting out the swelling and fast which is great coz I think that's what causes most symptoms and problems. Also I see you're on herceptin....my oncologist hopes that due to the blood brain barrier the herceptin can then get up there because my surgery opened it up as well as capecitebine is thought to cross the blood brain barrier which is why we are so hopeful it'll shrink the brain met too. Let us know what your plan is. You'll get through you'll be amazed. When I was first told I wanted to give it and then got my friends guy back and you will too, big hugs and ask me anything xxx

[SDP]

okay brainy ladies this is what we need http://www.ox.ac.uk/media/news_stories/2013/131010.html.  How do we speed this up?

[Sarahb51]

Hi ladies

I had HER2 pos breast cancer diagnosed in 2011 and had chemo/mast/rad and Herceptin for about 27 months as half way through chemo was found to have numerous small spinal secondaries that had responded well to chemo. All good until about 3 weeks ago when started to get really bad vertigo and vomiting. Told by 2 different GPs it was an inner ear thing. Last Monday finally had a scan and I have a met in the cerebellum hence the symptoms. I have a lot so swelling due to the pressure so until I've had steroids they can't be sure there's just one or its size. Still very dizzy and unable to walk straight but nausea improving so hopefully steroids doing their thing. See my onc next Monday for full diagnosis and plan. Obviously am frightened and trying to take it all in. Any advice would be sooooo helpful. I've certainly read some positive posts here.

[Wensteed]

Hello Hilsy,

I feel for you, I went through all the same emotions when I was first diagnosed with a brain met.

I was diagnosed with primary Breast Cancer (triple negative) in Feb 2012. I had a lumpectomy and the

sentinel lymph node removed, which was clear.  So no other lymph nodes taken out.  I thought I'd beaten it and I eventually had my wedding in May 2013 (which was postponed from 2012). Then towards the end of 2013 I started to struggle at work, my concentration and coordination wasn't right, then I found my left arm became weaker. My GP said I was depressed, but I decided to go to my oncologist and he determind straight away I had a problem and arranged an MRI scan and CT body scan.  I had a 3cm tumour in the front/right side of my brain and a lymph node on the original BC side was swollen. It turned out the lymph node was triple negative as well but they are saying the brain met could be different. We are still waiting for full results.  I was shocked .... I was told with the sentinel lymph node removed it couldn't spread any further. And it had also gone to my brain.  I'm still not sure how this happened and even my oncologist cannot explain it.  Anyway, the good news is the brain tumour was operable and it was completely removed in March (3 hour surgery) and now I'm on a tablet form of chemo to address the lymph.  I also have a spot on my lung, but they have not been able to confirm if that is a met or not.

The chemo I'm on also crosses the brain/blood barrier, which apparantely not all chemo's can do. You find out so much when you start doing your own research, rather than taking everything for granted !

Its terrifying when you find out you have something in the brain, but once you have a treatment plan you feel you have some control and you will feel better.  Ask lots of questions about the drugs, surgery etc and then you will be more confident its right for you.  I have to pinch myself to believe I've got secondaries as I feel ok and the chemo I'm on has mild side effects.  The worst part of it is that I cannot drive and its frustrating feeling normal and not being able to get on with things independently.

Take care and good luck with your treatment plan !

[Wensteed]

Hello Mawfred,

As others have said before, please see your Oncologist and not be put off by your GP. You

know your body better than any GP and the Oncologist will be more experienced.

I had very mild symptoms which I initially put down to the menopause - confusion, lack of concentration, emotional and anxious. Then my left arm became weaker and I found it hard to park the car straight and

was drifting to the left.

I made three visits to my GP, was told I was depressed, and put on anti-depressants !

I decided to bring my appointment with the Oncologist forward. Thank goodness I did, as he was very quick to determine something wasn't quite right in the coordination side of my brain. I had an MRI scan within a week and they found a 3cm tumour on the front right side of my brain (hence the left sided symptoms).  It was in a good position to operate and I had a very successful operation in March.

The Neuro Surgeon said he got all the tumour out and it was only 3 hours, and I was out of the

hospital after 3 days (amazing what they can do these days).

It may seem very frightening at the moment, but you will feel better once you have checked it out and

I hope some of these postings help you cope with whatever the outcome is. The quicker you get a

diagnosis, the quicker you can get a treatment plan worked out.

Take care and good luck !

[Mawfred]

Thanks for the advice. I think my GP thinks I am neurotic and worrying needlessly. Have an appointment with onc soon. Fingers crossed. Just want to feel the way I did pre diagnosis.

[Hilsy]

Hi I agree you should push for a scan. I didn't really have symptoms, I just had precautionary scans due to my history but I contacted my oncologist and I'm still under their care, not my GP. My oncologist is into scanning for anything there is slight concern about, she is over precautions and through that found a tumour. Don't want to worry you but it's worth pushing and good luck x

[roxy12]

Hi Mawfreds,

As Olives said, if it is your g.p. you have seen, you definitely need to see your onc and ask for a scan. Hopefully it will be clear and your mind will be at ease. I always ask by onc team if I have any worries about my b.c. you get results much quicker and if you are worrying this is what you need!.

Hope everything is okay. Take care, love Sheila xx

[Olives]

Hi Mawfred. I didn't have any symptoms like yours. I experienced a seizure where I blacked out for around 45 mins so was taken to A&E where they did a CT Scan to find out problem and discovered tumour. Not sure if you are referring to your GP or Onc when you say Dr. My advice would be that if you have any concerns you push for a CT scan from your oncology team at the hospital and just keep pestering until you get one to put your mind at rest. Hope you get on ok. Olives

[Jo_BCC]

Hi Mawfred

Welcome to the BCC discussion forums, you've come to the right place for some good, honest support from the many informed users of this site.  While you are waiting for replies could I suggest you give our helpline team a call and have a chat with them about your concerns.  Calls are free 0808 800 6000 lines open at 9am today until 5pm.

Take care,

Jo, Moderator

[Mawfred]

Ladies, I'm looking for some advice. I was diagnosed in Aug 2012 with 2cm, grade 2 tumour. No spread to sentinel nodes but one breast node was affected. Had chemo, rads, herceptin and tamoxifen.

I have recently started to experience dizzyness and pressure in my head. No headache or nausea. I have had an odd niggly feeling in my head for about 6 months and I had one occular migraine a few months ago (Quite frightening as had never experienced anything like it before). Nobody is concerned. My doctor recently said she was not concerned about brain mets. Howeve, I feel awful. Have been dizzy for a fortnight, neck feels stiff and waves of pressure in my head. I know my statistical risk is not high but am confused by docotor's lack of concern especially when I read other people's stories.

I would be really grateful for any advice. I am petrified.

[Hilsy]

Thanks you've helped me alot. Bless you you sound lovely and even through a lot x

[Olives]

Hi. Glad you are feeling a bit better. The tumour was in my left temporal lobe so at the side just above the ear. After surgery they seemed to think it had all been removed. As such I didn't need targetted radiotherapy. I could have had whole brain radiotherapy but was advised that as nothing else visible in my brain a watch and wait attitude might be better with regular scans. I was lucky that the rest of my body didn't show any other recurrence. Re chemo again my Onc doesn't seem sure whether to start or not. Had recent scans. No evidence of anything in body and still waiting for results of MRI. Everyone is different and it's important to make sure you ask your team all the questions you have. I am forever pestering for information from them and find it easier to deal with issues when more informed. There is another lady who was diagnosed at same time as me and she is also doing well. If you check my previous post you will see more info. Hope your day is ok. Olives

[Lucy_BCC]

Hi Hilsy and welcome to the BCC forums where you will continue to find support during this difficult time for you. In addition our helpliners are on hand with practical and emotional support for you on 0808 800 6000 and lines are open weekdays 9-5 and Saturdays 10-2

The following link will take you to the BCC secondary support and information pages which I hope you will find helpful:

https://www.breastcancercare.org.uk/secondaries

Take care
Lucy BCC

[Hilsy]

Hi olives thanks so much for your reply. I sort of feel like this thing has beaten me and your post really helped. Out of interest do you know where your tumour was in your brain? You poor thing having seizures how utterly terrifying. So lovely you're getting your life back. Did you not have rads or chemo after surgery? X

[Olives]

Hi. My story is similar to yours. Diagnosed with breast cancer Sept 2012. Had mastectomy, chemo and herceptin. Treatment ended Jan this year and was told all ok. Had two seizures on 16 Feb, taken to A&E where they carried out CT Scan and found 1.8 cm brain tumour. I had a total meltdown. However now nearly four months on have had surgery to remove tumour which was not half as bad as I thought and have just started to return to work. So the answer is a big YES you can live through this and get your life back. When I first found out I cried solid for a week but you just seem to adapt your life after it sinks in and learn how to live and move on. Fingers crossed that you get a quick treatment plan and remember there are others on this forum who have been in same position and are now going strong. There are lots of treatment options and if there is just one solitary met you are in a better position. I am also HER2 positive as well and it seems from what I have read that it is quite common for breast mets to go to brain in these cases. Hope this is of some help. Keep strong if you can. Hugs. Olives

[Hilsy]

Hi I'm 35 and nearly 2 years after my original breast cancer, HER2 positive and no spread even to lymph nodes, I today found out I have a 2.7 cm lesion in the right side of my brain. More to be discovered but they believe it's 'treatable'. Is that good?! No symptoms as of yet, think it was picked up merely by chance in MRI. Any similar stories and can I live through this? I'm terrified x