How to get a clearer picture?

Jeska

Hey everyone

My name is Jess, I am 24 and I joined this group because my mother has recently been diagnosed with breast cancer and I am looking for some advice.

When she was first diagnosed, she was given the option of having a mastectomy straight up or trying chemo every three weeks to see if they could shrink it and just do a partial mastectomy instead. She chose to try chemo first. They did a bone scan, heart and PET scan to help choose the right drugs for her and in the process discovered that there are a few patches of the cancer on her lungs as well. The plan has now been changed to chemo every week starting next week, and after that they will see what to do from there. Her chemo drug will be Abraxane and she is also going to have Herceptin.

What I am a little confused about is her chemo nurse doesn’t seem to think she will have surgery after the chemo anymore and I’m wondering if anyone has any idea why? I asked mum and she said ‘Oh they will just check once the chemo is done and see what surgery they need to do’ but I thought that was the plan the whole time. I’m thinking either Mum has misunderstood or perhaps they can’t operate now it has spread and she just doesn’t want to tell us. Would they not remove the main tumour anyway even though it has spread? Or would that cause more problems? Also, she keeps saying ‘its just specks on my lungs, not an actual tumour, the chemo will clear it up’, does the size of the one on her lungs really make a difference?

My understanding was that once it has spread, you can’t really get rid of it and treatment would be more about managing it like a chronic condition. I did get my medical degree from Google University though, so I don’t really understand. Between Mum misunderstanding what she is told and also being too scared to tell my sister and I the more negative stuff (neither of which I begrudge her at all), it is really hard to get a clear picture of what is going on and I’m feeling a bit bewildered and scared and in the dark. Would it be out of line of me to speak to her doctor myself? The thing is my sister and I are both 7-8 hours away from her (in opposite directions!) so I am a bit limited in what I can do from here. We will be with her the week of her second chemo session so maybe I should try to get some more info then.

I just don’t know. What would you suggest? Thanks in advance

Jeska

Thanks for replying

As my sister and I both live so far away we can't be at appointments with her however we will be there for her second chemo session so maybe I could try talking to someone then. She's not entirely sure how the process works with regards to having us there with her and what not. Is she allowed to have company while the chemo is being given or does that depend on the hospital?

Jeska

Thanks for replying

As my sister and I both live so far away we can't be at appointments with her however we will be there for her second chemo session so maybe I could try talking to someone then. She's not entirely sure how the process works with regards to having us there with her and what not. Is she allowed to have company while the chemo is being given or does that depend on the hospital?

Jeska

We haven't been able to be there for those appointment do far but we have done alternating visits a bit and will continue to after this trip. It's hard being so far away as I feel like she's freaking out now that the reality has hit her. We do as many trips as we can and she has great support from friends down there but I feel a lot of guilt that that we can't be there all the time .

Deanne

It can be done differently but I always saw my oncologist on the day I had my chemo. If this is the case for your Mum, then you would be able to accompany her to this appointment, if she would like this. That would be the best way of finding out more about your Mum's situation.

It can be very hard facing any diagnosis of cancer, and there is so much new and foreign information to try and understand. It can be very overwhelming and you just have to take it one step at a time. That maybe how your Mum is feeling at this stage. Emotional support is the most important part of this process and that can be done even at a distance. Physical distance makes it hard but you can still be a great support for your Mum. Just understand that she will need to feel her way with this.
No one knows how to deal with this at first. Wishing you and your Mum all the best. Deanne xxx

Jeska

Thanks you so much everyone I really appreciate it. I'm doing my best to support how ever she wants to find bet way through this which is why I've felt iffy about speaking to her doctors. I'm afraid of asking them questions in front of her that she's not ready for the answer to yet. I am someone who functions best with lots of information and facts and I'm trying to remember that not everyone is like me, I don't want to tread on her toes. She had an appointment with a nurse who was very cold and matter of fact with her and she came out of the appointment feeling like she had no hope so I want to avoid making her feel worse.

Jeska

Thanks you so much everyone I really appreciate it. I'm doing my best to support how ever she wants to find bet way through this which is why I've felt iffy about speaking to her doctors. I'm afraid of asking them questions in front of her that she's not ready for the answer to yet. I am someone who functions best with lots of information and facts and I'm trying to remember that not everyone is like me, I don't want to tread on her toes. She had an appointment with a nurse who was very cold and matter of fact with her and she came out of the appointment feeling like she had no hope so I want to avoid making her feel worse.

Jeska

Thanks
She has had contact with some support groups already and has some wonderful friends taking her to appointment and will be staying with her sometimes and helping her with shopping and things so that's a relief to know they are there. I think waiting for it to start is driving her nuts, just not knowing exactly how it will affect her.