Diagnosed with primary breast cancer 18 months ago. Had surgery, chemo, herceptin. Just getting back to normal then had seizure at weekend. CT scan has shown 1.8cm lesion in temporal lobe. Have MRI tomorrow and all over CT scan Monday and apt with Onc. Just in shock and scared going to die. I am 45 and have two kids 14 and 10. Partner is being supportive as poss. Just wondered if anyone out there can give advice or any positive info?
Hello Olives
Welcome to the forums, this must be a very difficult time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open again in the morning and normal hours are Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Best wishes
June, moderator
What a shock for you Olives. There is a lady called Lemongrove who has experience but I haven’t seen her here for a while. Have you looked at the option of having cyber knife? I am not an expert but if you have one met it might be an option. I will try and find some of Lemongrove’s posts for you, will bump them up for you. Do give BCC a ring too. My very best wishes. X
Hi Belinda. Thanks for your response. Have read some of Lemongroves posts. Really hoping things are going well for her at the moment. I am waiting for more test results, MRI and body ct. only finished herceptin five weeks ago and was feeling fine. It is all such a shock. Friends and family are rallying round but just want to fine out what treatment I can get. All the waiting is so difficult. Thanks anyway for post and bumping.
Olives I have no personal experience of brain mets…but over the last few weeks I have come into contact with 2 ladies discussing their brain mets. One had brain mets diagnosed following a fit about 15months ago…had whole brain radiotherapy and was on chemotherapy…she spoke about getting her driving licence back and her guilt about commuting weekly (by train and through London)to the other side of the country to provide childcare for her daughters children(she wanted to reduce her commitment! ). The other lady was at a secondary BCC day. Again she was more than a year on from her brain met diagnosis. She had had cyberknife treatment and was on chemotherapy…again one of her concerns was getting her driving licence back…More and more people are surviving longer with brain mets…it appears that it is not the death sentence it once was…good luck.xx
Hi. Thanks for all info. I have another full body CT scan today and see Onc again. It is good to hear about people who are still around a year plus after diagnosis, gives me some hope. It’s just such a shock when you have only just finished treatment and feeling fine and then have a seizure. I just wanted to be around for my kids for a few more years. So glad you are doing ok and finally got your choice of treatment. Will update when have more info.
Hi all. Had ct scan and mri yesterday and follow up with Onc. Good news in that ct scan of body shows no spread of cancer to lungs, liver, bones, etc. Also good news in that mri showed no further spread in brain. However all a bit confusing now as Onc says no longer sure mets spread from breast cancer but could be new primary. My own thought is that it is a met from breast cancer rather than a new primary. Apparently they will have to discuss my case on Friday at an Onc Nuerosurgeon meeting to decide how to proceed. Now talk of possible brain biopsy or surgery or gamma knife in Sheffield so back in the waiting room for rest of week. The thought of brain surgery is scaring me a lot and doesn’t help just having to wait around at home. All help on here is appreciated. Just also wanted to say I am a bit of a FB negative so don’t have an account (although may look at setting one up now) so do appreciate people still posting on here. Thanks, Sarah
Hi. Just wanted to say they have decided to refer me to a Neuro surgeon who I am to see tomorrow. I am now starting to get concerned about time scales as it will be three weeks since my seizure soon. Does anyone have any info about how long it should take to get treatment plans under NHS. I am unfortunately not covered by private but surely in serious cases this should not affect how well I am treated. Just starting to have a bit of a panic about it all and wondering how quickly things could be growing up there. Any info would be appreciated. Olives
Just wanted to update on my progress. Had a craniotomy two weeks ago which went well. They were able to remove all tumour and some surrounding brain tissue. Recovering at home now. I have been told I will need radiotherapy next but there seems to be a big debate over whether this should be whole brain radiotherapy or targeted such as cyber knife. I know there are lots of comments on posts about targeted radiotherapy and wonder if anyone has any advice on what might be best. After this I will have chemo and Lap/Cap has been mentioned which I know others have referred to and something called TDMI. Does anyone know what this is like and whether it passes through blood brain barrier to brain? Everyone on the forum has been so kind and helpful and it made a real difference when I was first diagnosed to have the support so thanks to all.
Hi Daysie. So sorry you have received this diagnosis and totally understand how you are feeling. As you will have seen from my thread, I was diagnosed with secondary brain tumour after suffering seizures in February and was devastated as I had only finished 18 sessions of herceptin in January and thinking all was fine. The waiting for advice and treatment plan is the worst time. Gamma Knife is a type of targeted radiotherapy. If the tumour cannot be removed by actual surgery then targeted radiotherapy can be used to effectively blast the tumour so that it is destroyed. There is loads of information on line. Sometimes you can also have Cyber a Knife which is similar. The worst time for me was when I first found out I had a tumour and my thoughts are with you. I hope that you will soon have a treatment plan in place. I have had wonderful advice from a Macmillan nurse so might be worth contacting them if no has already put you in touch. Olives