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.
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.
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
","body@stringLength":"435","rawBody":"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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