Posted on behalf of new user Catherine
Hi everyone,
I’m new to this site and am looking for people’s experiences with secondary breast cancer in the bones and brain. It is triple negative.
My mum who is 52 now, was diagnosed with breast cancer in July 2009. She had a lumpectomy and received both chemo and radiotherapy due to the cancer being grade 3.
Everything was going great and my MUm seemed to be doing wonderful upto just before Christmas when she started having a pain in her leg. A lot has happened since then and in feb 2012, she noticed a few small nodules on her skin on the breast. A biopsy was done and it confirmed the cancer was back. Since then she had scans on her bones and we were told the cancer had spread to her bones and the scan also shown two small nodules on the base of her brain.
We are all in shock but trying to stay as positive as we can. My mum had radiotherapy to the tumours on her spine and upper FEMA head and then had radiotherapy on her brain. She is now recieving chemotherapy through a tablet form as the consultant wants to keep her quality of life good whilst it still is.
The consultant has told us that the cancer isn’t curable and that it will eventually spread. Due to it being triple negative, other than the radiotherapy she has already had on her brain, there isn’t anything else they can do for the cancer on her brain as the chemotherapy just won’t travel to that part of the body.
I’ve read through so many of the posts on here and I haven’t come across anybody who talks about a diagnosis similar to my mums. I can see how much of an inspiration these posts can be and think it would be really helpful to show my mum people’s stories who are going through similar things.
I have been a little vague because there is just so much to remember so if anybody would like some more information I’m more than happy to give it.
Catherine xx
Hello Catherine
Welcome to the forums, I’m sorry to hear of your mum’s secondary diagnosis. I’m sure the users of this site will be along to support you soon.
Maybe you and your mum may like to talk things through with one of the helpline staff, they are there to offer emotional support as well as provide information. The free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 9-2 Saturday.
Best wishes
June, moderator
Dear Catherine
I am sorry to hear of your mums diagnosis. There is a thread triple negative recurrences/secondaries that you’ll see under latest posts often. There are a handful of us who are all triple negative and we’ve all got recurrence or spread in most cases. I was diag June 2010 with secondary spread from the beginning after the birth of my son. It has spread to bones, liver and lung but I have radiotherapy for bone flare ups and chemotherapy.
I’ve been on chemo since then but some are far easier to tolerate than others and am still able to take my young children out when I can. I think your mum would find the thread helpful as we all support one another.
Best wishes
Jo x
Hi Catherine, your poor mum. What a shock. I am also triple negative and have secondaries in lungs and brain. Very luckily, there was just one legion in the brain, very near the surface of the skull so they were able to operate and remove it. I think there are one or two chemos that will pass through the blood/brain barrier, I know someone who is on cisplatin which seems to be working well. I also know someone else who had WBR and has not had a problem since. It’s terrifying, the thought of it being in the brain and I was really under the impression that you were toast once it got to that stage but it’s really not the case. I was referred to the national hospital for neurology and neurosurgery where everyone has been wonderful. I’d recommend it in a heartbeat if your mum felt able to look into that. I now have a new oncologist who specialises in the management of brain secondaries (in addition to my regular oncologist) and there IS a lot they can do, so don’t give up. Sending all my best to you and your family xx
Hi Catherine
I am sure that somebody on here in recent months has talked about her experience with ciber knife surgery to the brain. This is supposed to be a very effective treatment for brain mets. Unfortunately I cannot remember her name, but i remeber signing a petition in support for this type of treatment.
hugs xx
I’m pretty certain that Lemongrove is the person who has a lot of knowledge and information about the cyberknife - apologies if it isn’t! Lou x
Hi yes it’s lemongrove pm her I’m sure she will help you
Hi
Just a reminder to everyone not to mention the name of health professionals on the site but to exchange this information by pm.
Best wishes
Janet
BCC Moderator
Hi Catherine,
I don’t know if you still use this site so long after this was posted but I have found out today my mum has exactly the same as you discribed above and was wondering what was next for you and if her treatment worked,
Many Thanks
Loui