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Brain Met - Options

15 REPLIES 15
T3D
Member

Re: Brain Met - Options

Hi  Deedeepuss. I had craniotomy at the end of March followed by radiotherapy following a secondary breast cancer brain tumour.  

I did have some side effects mostly tiredness and I'm completely bald as I had full brain treatment. For me the tiredness was by far the worst -much more than with last years chemo and rads to breast. I found going upstairs exhausting (even cried coz I don't live in a bungalow - haha) so plan your day carefully and rest as much as you possibly can. I was on steroids for quite a while and when I came off them the tiredness kicked back in. I feel much better now and I'm about 3.5 mionths post surgery. I am also having herceptin one injection every three weeks and apparently this can penetrate brain tissue after radiotherapy  so I'll stay on that indefinitely

Unfortunately I just had my CT and MRI results back and I still have a bit of tumour left , which is a pain, but I should hear next week about some further radiotherapy. 

Hope your treatment goes well. 

Deedeepuss
Member

Re: Brain Met - Options

Hi, I've recently had a craniotomy to remove a 2.5cm tumor at the tea of brain, right between the two halves of brain. Small nodule left so told radiotherapy. See onc in 2 wks to discuss treatment plan. Brain specialist nurse said there are a couple of chemos that can get through bloid/brain barrier with secondaries in brain, has anyone been down that path? She also mentioned some unpleasant side effects from radiotherapy, has anyone been down that route?

Xxx
Olives
Member

Re: Brain Met - Options

Hi.  Sorry for late reply.  I had my tumour removed and then no other treatment apart from tamoxifen and epilim.  I had MRI every three months and they took a watch and wait attitude rather than go down radiotherapy route.  I would advise you to check out what is right for you.  X

fiddleranne
Member

Re: Brain Met - Options

Hi, I'm fiddleranne. Just seen your message of 27-02-2016. Only just signed up myself. I'm BC with a brain metastases too. 3.5 cm removed completely in April, just going into 1 or 2 sessions of radiotherapy. I too am looking for information!
omrimeltzer
Member

Re: Brain Met - Options

Dear Olives,

I saw your posts and wanted to say that i'm trying to find information for someone with breast cancer with brain metastases only. would it be ok to ask what was your treatments, including if you did any kind of special treatment of any kind. i hope it is ok to ask these questions because my friend is really looking for any good information.

Mindy63
Member

Re: Brain Met - Options

I came across a case where a lady had one brain met which was removed. She was treated with hormone therapy and has had no other mets some 18 years later. I read it online but can't remember exact sight though I believe it was a medical site.

Olives
Member

Re: Brain Met - Options

Great news.  So pleased it went well. x

belinda
Member

Re: Brain Met - Options

Best wishes to you both, so glad to read the op went well.
Freakzilla
Member

Re: Brain Met - Options

Tumour was completely removed on Friday.  Girlfriend is home already and feels OK, just tired.

 

So Happy.

 

Meeting with the Onc in two weeks for next plan.  Hopefully a SRS boost and Herceptin for a while.

 

Thanks everyone.

Freakzilla
Member

Re: Brain Met - Options

Thank You,  It helps massive to hear from people who have been through this and are doing well now.

 

We have an appointment with the NeuroSurgeon tomorrow morning. 

 

Did you have any other treatment after Surgery?  I am hoping for Surgery, then Radio Surgery and poissibly WBRT?

 

Thanks

Olives
Member

Re: Brain Met - Options

Hi.  I had primary bc in 2012 and then secondary brain met discovered in Feb 2014.  I had a craniotomy in March 2014 to remove solitary met and have been incredibly lucky since to have no recurrence.  It is possible to live a normal life even after brain mets.  Please feel free to pm me if you want any more info. Sarah

Freakzilla
Member

Re: Brain Met - Options

Thanks everyone.

 

Find out on Friday if Surgery will be performed.  Keep everything crossed!

belinda
Member

Re: Brain Met - Options

Hi Freakzilla, I'm sorry you find yourself posting here. Like Nicky I also have secondaries, not as far as I know to the brain, but I have heard of others who have had secondaries to brain only and not elsewhere. You may want to look into cyber knife availability for your girlfriend as unlike whole brain radio it can be repeated. Single or very few mets are normally favoured for cyber knife but there's also the actual position of the met to be taken into account. 

If you and your girlfriend feel the need for a second opinion and don't already attend there you could get an urgent referral, via your current Onc or GP to either the Royal Marsden or Christies. Good luck and best wishes to you both. X

Sam_BCC
Member

Re: Brain Met - Options

Hi Freakzilla

 

I'm sorry to read of your girlfriends diagnosis.  I have included below the links to the two threads Nicky has mentioned in her post:-

 

http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Brain-Mets-ladies/m-p/962364#M6...

 

http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Brain-mets/m-p/962365#M62689

 

Also BCC have a helpline where you can talk thorugh your thoughts and questions with a member of staff who will offer you a listening ear as well as support and practical infromation.  Do give them a call on 0808 800 6000 as you might find it helps to talk things through.  Lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.

 

Best wishes Sam, BCC Facilitator

nicky08
Community Champion

Re: Brain Met - Options

Hi

so sorry that you have to find yourself in this position having to ask questions about such a scary diagnosis for your girlfriend.

There are a couple of threads in the. Living with SBC section of this forum that I will 'bump' up so that you can see them more easily, it's not the easiest of layouts so it won't be obvious to you that others have asked similar questions before. Although I have SBC I don't have brain mets to my knowledge so can't add any experience but others have had treatment for brain mets. Just one question, is it definitely a brain met and not a primary brain tumour? I have not heard of SBC only showing up in the brain and no other organ or bones so I was just wondering how the diagnosis was made, sorry if I'm prying or not helping by asking this.

Nicky x

Freakzilla
Member

Brain Met - Options

Hi Guys,

 

This is my first post.  Last week my Girlfriend was diagnosed with a 4cm Brain Met at the back of the frontal lobe.  It seems to be near the Motor Cortex.  She is only 32 HER+ and E+.  This is the only Met, and the rest of the body is clear on a CT scan last week.  We are waiting to hear if Surgery or Radio Surgery is possible.  Has anyone else had an experience similar to this?  Also I was wondering if you can have WBRT to shrink the tumor and then either Surgery or RadioSurgery.

 

Thanks