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Uncertainty about the future - Mum's brain metastasis
Hi there everyone
I had posted on here late last year but I can’t find my old post and the situation has changed so much I thought I would just start again. I just want some advice, or really, just people to hear me regarding the fear and uncertainty I’m feeling about my mums cancer. Just for a bit of background, she is 56 and was diagnosed with breast cancer in May of last year, and underwent chemo and Herceptin, and then a mastectomy when the chemo didn’t shrink the tumour enough for just a lumpectomy. She also had all the lymph nodes under her arm taken, and then had some radiation on her chest to clear up the bits that couldn’t be removed in surgery. She also had a few little specks on her lungs, and the idea was that after the radiation on her chest, they were going to try a different kind of chemo to target the spots on her lungs. They did an MRI a while after the radiation just to double check it had done its job and it was then that they discovered a tumour in the base of her brain. The doctor compared it to the scan done a year earlier and found that it was there then as well and had just been missed (!!!??? I don’t even know what to say about that!?). They said it hadn’t grown at all during that period and they recommended surgery but she declined because she was too scared. She has had no symptoms from the brain tumour whatsoever and was terrified that the surgery may actually cause some damage that would start symptoms if that makes sense. So they sent her to Sydney for an intense one dose radiation treatment. That was a week or two ago, and now we are just waiting for her to have another scan in a few weeks to see if that radiation has done anything. If not, it’ll be back to chemo and possibly surgery.
I’m finding that the ‘wait and see’ aspect of this is really wearing me down. Its been 15-16 months and it seems like each new scan or whatever is going to be the definitive one that tells us everything we are dealing with, but instead each time there just some new nasty surprise. From what I’ve read the outlook is pretty bleak once it has moved to your brain and I’m not sure if mum gets it. She says that they are always telling her different things and she doesn’t understand what is going on but I don’t know if she truly doesn’t understand or is massively afraid and in denial. I live 7 hours away so I haven’t been able to be there for a lot of this but I’m going to her next appointment and I want to ask some questions but I’m afraid of asking something that she’s not ready to hear the answer to. She’s trying to be so strong and positive and I’m afraid that some of the answers to my questions will not be what she’s expecting and just shatter her optimism and good attitude and I don’t want her to be scared. I’m just so uncertain about the future, like do I need to start preparing for the possibility of nursing her in my home should symptoms start? Will she die next year? Or are we looking at 20 years of her having chemo and surgeries and radiation? Its such a hard thing because on paper it seems so serious but in person she doesn’t even seem sick at all.
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28 Replies
Hi Scotty,
I don't have any problem with Jeska's post. I think its an important topic and I hope that we were able to give her some comfort and help.
It's okay to be scared of your cancer coming back but if its consuming your life then maybe you need to find some ways to deal with it? I know relaxation podcasts have helped me a lot, as has exercise. I'm not sure what your status is with your cancer at the moment, but don't let the fear of it eat you up faster than the disease does (if that makes sense?)
We all need to be here for each other.
cheers
Mira
Hi Jeska,I'm really sorry for your Mum's prognosis and I hope she can have a good outcome. I'm not meaning to down or offend you but we try to comfort and build each other up on this site I don't think this site is where you should be asking these questions on here we all have had our journey with breast cancer and are mostly frightened ourselves.I know your post has put the fear of God into me I don't know how other members feel about that. It would have been better to discuss this with your Mum's oncologist or GP please don't think I lack compassion for you it's just that I'm scared too and we all live this fear daily about cancer coming back and spreading I know it all has consumed my life I am a nervous wreck most days and when I come on this site I feel comforted but as I said your post has frightened me. I'm quite surprised you were allowed to post it.
Hi Jeska. I'm going to jump in with a medical perspective here. I'm a nurse. I understand your need for information, but your mother's doctors would need her permission to give you any information, due to cofidentiality legislation. The permission would preferably be in writing, so she couldn't later say she hadn't given permission.
I hope one way or another, you can get you questions answered. I feel it's important for family to be aware & involved.
take care, Lyn
Thanks Jess, might give them a call and get some ideas on how to approach it :)
Thanks for replying Robyn, sorry to hear about your mum but glad you are well. I am so eager to go ask the doctor some things myself. I was speaking to mum last night and she was saying 'I just want to be cancer free by the end of the year', and I felt really weird because I've had it in my head that she'll never be cancer free again based on what I've read so it will be good to hear for myself what the situation actually is
Hi Pam thanks for directing me to that site, I found it really useful because it's so specific to her situation. It's hard not to instantly go worst case scenario in your mind when all you've heard is 'it's in the brain' but having the extra info really helps
Hi Rowdy thanks for replying. I'm going to try to gauge how she's feeling about how much she wants to know when I see her in person. It'll be better than speaking to her on the phone and we can work out together what to ask :)
Hello Jeska,
Firstly I just wanted to say welcome - It sounds like a really tough time for both you and your mum, and I hope the online network can help you to connect and find some of the support you are looking for.
It is certainly not uncommon to have some questions, and there are some good support services which can help to give you some ideas on how to talk to your mum about her diagnosis.
Can I suggest maybe giving Cancer Council a call on 13 11 20 (it's free). They have a confidential telephone information and support line and anyone can call including family and friends. They have specially trained staff who can offer emotional or practical support for you both.
Canteen also offer some information and support services for young people who have a parent diagnosed with cancer. If you did want to find out a little bit more about it, you can find all the information on their website: www.canteen.org.au.
There are many ways for you and your mum to find some support,so please just feel free to get in touch with us should you need any help. I hope that some other women will be continue to jump in and offer some ideas as well.
~Jess
Hi Jeska,
I really feel for you and know what you are going through. My Mum died in 1981 from metases. She had a Mastectomy, chemo, radio and it still spread to her neck and brain. But that was a long way back and I'm sure they will be able to treat and keep her comfortable. At least that is good she doesn't appear too sick. My Mum died at age 57, ironically when I turned 57 I was diagnosed with breast cancer. I underwent Mastectomy, axillary node clearance and chemo, now nearly five years on am on hormone treatment. I can only suggest you talk with your Mum and assure her you want to be with her and ask questions at the appointment. Yes after chemo you become forgetful, and she may not take it all in, but with you there you will also know and don't be afraid to ask all the questions you want.
My prayers go out for you and your Mum and family.
love xxx
Dear Jeska,
I think your original impulse is right - your mother should know at least as much as you do, though you can be helpful in remembering stuff she may have trouble assimilating. Just remember that a diagnosis like this isn't a death sentence. Statistics don't tell us what will happen to any one individual. I gather your mother is Her2+. There is a good U.S site Her2support.org, which is a good source of info and support for women with brain mets. (and other mets) Best wishes... Pam
