New here - Struggling with fear and uncertainty

[jekandsuch]

Hi guys I'm new here and I'm sure sure exactly what I'm after except maybe some reassurance? I don't know. A bit of background. In May of last year, my mother was diagnosed with breast cancer. By the time they found it, it had already spread to her lymph nodes and there was a tiny speck on her lung as well. They offered her the choice of a mastectomy straight up or she could try chemo and possibly shrink it enough to just have a lumpectomy. She went with the chemo and had that as well as Herceptin for a few months. It shrank the tumour significantly but not enough to avoid the mastectomy so she had her left breast removed as well as all the lymph nodes under that arm. She then had radiation on that side of her chest just to clear up anything that was leftover. This process was all over the course of just over a year After the radiation ended a month or two ago, she had a PET scan to determine how much was left on her lungs etc to see what the next course of action should be. On this scan they found a small lesion at the base of her brain. They compared this to the PET scan they had done before the first lot of chemo and found that it was there then as well and hadn't been noticed at the time (which I just don't get and am so mad about. The whole point of the scan was to see if it had spread already and the brain seems like a pretty big thing to miss??? Anyway). They weren't sure if it even was breast cancer that had spread or something else andsaid it hadn't grown or anything in that time but that she would need surgery to remove it. She was too frightened to go ahead with the surgery because she was worried that it would damage her brain and cause some kind of symptoms to start when she has so far had none from the lesion itself. So she had one intense dose of radiation on her head last week and the MRI she had for that apparently showed that it is in fact cancer. So as it stands right now, she has small amounts of breast cancer in her lungs and brain and I am trying not to freak out. They will see what the latest lot of radiation has done and if it hasn't been effective they'll try more chemo then ultimately brain surgery if needed. I don't know if the goal is still to get rid of it all or if we are just at the point of trying to prolong her life rather than curing it. I feel like each new scan and procedure changes the game totally and its so hard to get clear information out of her because I live 7 hours away and my sister and I can never tell if she genuinely doesn't understand things or if she's keeping stuff from us because its too scary. I don't know how to be or where to put myself and I can't stop thinking about what the future holds and how long that future may be. I'm so frightened and helpless and really struggling with the lack of certainty and information. I don't know what I even want anyone to sya, just tell me that I'm not going to lose my mind lol. Sorry for the novel guys, and thanks.

[Jules2]

Hi jeknstuff Sending you a hug! It is tough with a cancer diagnosis. One thing I found to help me was to focus on small bits at a time and not try and deal with all my emotions at once. I hope uour mum's treatment goes well for her. Julie xx

[jekandsuch]

Thanks for replying Julie :) I'm trying my best to do that, just absorb each new bit of info and not get overwhelmed. It's just hard to think about the future and have no idea what's going to happen. The situation seems to change almost weekly so I feel a bit on edge all the time

[Jule1971]

Hi I posted on here a while ago as my mum has soft cell lung cancer. The weight of the world was on me as I live here and she is in UK, hence my post. You feel so alone and I appreciated those small exchanges from others which just say, we understand, we really do, we each have our own stories. Agree with other Julie. Take each day as it will and does change daily. I found that just by writing on this discussion it helped me a lot, even when no one read them. To honestly say how I am feeling, how destroying it is, how angry I am, sad, lonely. If it is possible to be with your mum when she has a meeting with her consultant try and arrange it so you can go and talk direct to try and get answers, although be prepared that sometimes there is none and it really is a waiting game. Keep us updated on things and wish you and your family all the best x