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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Hi Jeska,
I feel for you, that must be an incredibly difficult situation. Do you think your Mum would mind if you had a chat to the doctor (or nurse) without her being present, so that you can ask all your questions without fear of upsetting her?
Good luck with it, your Mum is incredibly lucky to have someone like you caring for her
cheers
Mira
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Hi Mira
Thanks for replying. That is sort of what I'd like to do but I feel like it will be weird for her knowing that I know things she doesn't if that makes sense? I don't want to make her deal with this my way instead of her own way, I sort of feel like msube it's not my place to be finding things out that she's not ready to know. I don't know. I feel like she still believes it's curable and from what I can gather, I don't think it is.
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Hi Jeska,
I feel for you and understand what you mean by not wanting to leave your mum out in any discussion. Maybe convince her that you like to know all the things the doctors had told her before in your absence for your peace of mind and catch up with the doctors or nurse before or after the appointment. Sometimes as a patient, we are not very focus and couldn't understand everything we are told. My daughter comes to my appointments most of the time because she said I got my treatment process or appointment dates wrong all the time. and had to correct me because at times i only listen to what I think I was told and not really listen.
Not much help but worth letting her know that it us good for you as her daughter to get first hand update and advice from the doctors in order to support her. She will understand and appreciate it. I didn't want my kids to know when I was first diagnosed because of fear too. I then told my daughter as she knew of my doctor appointment and then the other kids. I am glad I did.
All the best.
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Thanks for your advice Rosemary it's really helpful.
Just the main thing is I never want her to feel like I'm trying to take control away from her, I just want a better understanding of what's happening. I have so many questions and I'm not always sure if she's too scared to tell me the answers or just doesn't know.
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Hi There
I understand exactly what you are going through, I had the same with my mother who was diagnose with Parkinson's disease at the age of 50. She didn't want to face the truth in the beginning which unfortunately I allowed to happen - worst thing we could have done as the disease progressed quickly and when we should have been doing all the suggested therapies, we were all letting her "deal with it in her own way". Its really tough but if I had my time again, I would have been asking and getting answers on all the hard questions as early as possible.
Another thing to take into account is the constant fogginess that comes with chemo, I am only one treatment in and already things seem harder to concentrate on - she may also be suffering from that??
Not BC I realise but along the same lines.
Good luck, Kari
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Thanks Kari that's really helpful. I've gotta get a clearer picture of what's happening because this very slow dribble of incomplete information isn't helping I don't think.
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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
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Hi Jeska welcome to the site, my heart goes out to you. Talk to your mum and tell her how you feel, ask her if you can ask some of the hard questions wih her there or if she would rather you do it alone. Take care of yourself as well, the stress for all of you is high.
It is a hard road I think in some ways it is just as hard for family members because we are the patient and some how it is different.As the patient I felt some sort of calm and dispair all rolled up. I know that sounds strange but it is hard to explain. Good luck and give your mum a hug and ask for help
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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
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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
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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
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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
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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
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Thanks Jess, might give them a call and get some ideas on how to approach it
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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
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