Question about brain mets

Hello all,

I hope you don’t mind me posting on here but I have a question regarding brain mets. Basically I am wondering what signs and symptoms there are (if any) prior to a diagnosis of brain mets. I have obviously scoured the net but there is no substitute for real life experiences.

A little bit about me in case you’re wondering why I’m asking this…I was diagnosed with bc last March, age 34. Had a right mastectomy and total node clearance. 25/28 nodes involved (a lot I know), Er+ and HER2+. Had chemo and rads. Started on Herceptin but have only had 3. This has now had to be stopped as I was recently diagnosed with heart failure, which was believed to be caused by the chemo (a rare side effect). I have been led to believe my chances of developing secondaries are v.high, due to the aggressive nature of the tumour, coupled with the fact there were 25/28 nodes involved and I’m unable to take Herceptin.

The reason I ask about brain mets signs and symptoms is that I have been experiencing quite a lot of dizzy episodes lately, and my left hand keeps going numb. I have had numerous scans in the past but have never had a brain scan of any description. I don’t want to be paranoid, and I know there could be a simple explanation (such as my heart medication has recently been increased). Not sure when’s the time to worry and when not too really.

Any comments or advice would be greatly appreciated,

Many thanks in advance,

Take care,

Kelly-x-

Hi Kelly

I too worry about brain mets as I’ve had some dizzy episodes over the last 2-3 weeks and it scares me. I’m also in a similar position to you (in fact I think we’ve spoken about this before). I’d had 6 lots of herceptin until December but from January onwards they wouldn’t give it to me due to a low white blood count. Finally they agreed to me having it again 3 weeks ago and then last week I got an infection and spent 5 days in hospital. I was due to have my next lot of herceptin tomorrow but got a call from the hospital to say the oncologist and haematologist have decided I’m not having it anymore!

I’m all worked up about it so I can imagine how you are feeling. I’ve got a whole argument which I’ve put together about why they should give it to me and for exactly the reasons you’ve mentioned above - the aggressiveness etc. I’m now really scared and concerned about not having it. Surely for me the good that herceptin will do outweighs the bad (low white blood count?) I’m being really careful about infections etc and staying away from people. It just seems so unfair as I understand the risks involved and sometimes I think they really just don’t know the answer as to why I have been affected like this.

From what I recall you did manage to have some doses of herceptin before it was stopped? I really think this will have made a difference to you and therefore to me too but I guess we both feel short changed. Why can’t things just go smoothly?

Thinking of you
Ruby xx

Hi Kelly

I don’t have brain mets but just wanted to repond to your post. So sorry you’re worried again. I think there are several symptoms of brain mets including dizzy spells and loss of of feeling. A lot of people seem to get bad headaches (starting bad in the morning quite often) too. As with everything there’s quite a lot of variation person to person.

I think if your symptoms if don’t go away in the next week or so you shoudl report them to your onc and ask about a brain scan. Asyou say your symptoms could be connected with your heart medication but best to know?

Can imagine you’re feeling pretty scared. Really hope this is nothing serious.

very best wishes

Jane

Hi Kelly and Ruby
I can only tell you about Lisa … she started getting dull headaches half way through rads for a secondary back lump but they kept telling her it was the rads and she wasn’t drinking enough. This was beginning of Feb. Some days the headaches were slightly worse than dull but naturally she believed what they said and tried to drink more. Then about 10 days later on her last session of rads she had the most awful splitting headache and told the Onc at the hospital but he again said it was possibly the radiotherapy and told her to take strong painkillers. She wasn’t really fit to drive the car that day but she drove 15 miles round trip … I knew nothing of this until later otherwise i would have had a fit. She took the painkillers which helped a bit but she still had a permanent headache for days but just bearable. She had never suffered with headaches so it all seemed strange to her …also we had been told in the beginning that with rads to this small area of her back she shouldn’t have any symptoms at all. I had started to get suspicious but didn’t want to frighten her. A few days after that and still on painkillers … paracetamol and co codeine … she was suddenly sick. She put up with that for two days and then i took her, in tears as she was now very frightened, to the hospital. They immediately did CT scan and found two tumours … one very large in the front and one not so large in cerabellum. I am not aware of her having any numbness but she did have dizziness. She had put up with the pain and dizziness for about 3 weeks in total but it was only when she started being sick that they did the scan. You may have read everything else I have written about her brain op and now the WBR which started yesterday.
I would advise that you go and ask to have it checked out, you don’t want to wait until you start getting sick … it may just be an infection of course or drugs but it would be nice to know to put your mind at rest … I don’t know why they don’t do scans to brain as a matter of course … I would imagine its down to cost … I did ask at the time and didn’t really get an answer… just waffle. If Lisa hadn’t been having rads to her back when her headaches started then she would have asked to have it checked before they got so bad. Lisa is just 34 by the way.
Let us know how you get on
Love Sue x

Hi Kelly and Ruby

You might be interested in Breast Cancer Care’s publication on the subject of brain mets - I have given the link here:

breastcancercare.org.uk/docs/secondary_breast_cancer_in_the_brain_0.pdf

However, if you are having concerns about possible symptoms, I strongly suggest that you contact your medical team or breast care nurse for advice.

You are also very welcome to contact our Helpline who will be able to offer further support and advice on the subject.

The Helpline number is 0808 800 6000 and is open Monday - Friday, 9am - 5pm and Saturday, 9am - 2pm

Our helpline is a free and confidential service. Run by specially trained nurses, we are able to offer advice about services inside and outside Breast Cancer Care and can help you make informed choices about what you should do.

I do hope this information is useful

Kind regards

Louise
Facilitator

Hi ladies,

thank you, as ever, for your support and advice. I really appreciate you all sharing your experiences and feelings with me. Last night I scoured the net looking at the various side effects of the heart meds I’m now on. One drug in particular, although quite rare, is known to cause dizziness, numbness in hands and headaches. I have recently had the dose of this particular drug doubled so I guess its quite possible that that is the cause of my symptoms.

I am gonna give it another week or so and if I see no improvement or symptoms get worse I think I’ll mention it to my bc nurse.

Thanks once again,

Take care all,

Kelly
-x-

Hi Kelly and Sue

Kelly I’m pleased that you’ve managed to work out what could be causing the dizziness. It’s such a relief when you can do this. I saw my oncologist this afternoon and mentioned my unsteady feeling to him and he was quite happy to send me for a scan but I said I’d like to wait and see how things go. His assistant did mention that if you have tension in your neck, this can cause these types of feelings. I feel a little better about it all now.

Sue thank you so much for responding to us both especially during this very difficult time for you. I am thinking of you, Lisa and your family and hoping that Lisa’s treatment is going well.

Very best wishes

Ruby xxx