MBC-spreading in a lot of places.


This is my first time signing up for one this because I feel like everything I read on the internet doesn’t help and makes me scared. 
My mom is 52. She was initially diagnosed at 39, did two rounds of chemo, radiation, surgery, and seemingly “got rid of it” and has had clear scans for 5 years! Then within that fifth year it had come back in small tiny places on a couple rib bones ( it had initially spread to the bone in the beginning) She has tried many drugs that work for a little and stop working. She started this new drug 6 months ago and it shot her tumor markers way down right when she started taking it and then within 3 months, her tumor marker had gone back up. We just found out today that her cancer has spread to her liver, a very small spot on her lung, very small spot on her spine, a node in her neck, and a small spot on her collarbone. 

I am devastated. She has been living with MBC for 12 years now and believe that she can fight this. Her oncologist has ordered new biopsies and is figured out the next plan of attack. I am hoping the new treatment /starting full chemo will work.

It seems impossible that this is happening with how carefully she is being watched. 
but does anyone on here have an experience similar to this? Or have had a similar spread and was able to manage it through chemo? Just looking for some positivity right now. 

Hi Rochelle

I was very moved by your post and sense a load of anger bubbling under the surface. Yes, you’re mum is putting up with a lot but she has her treatment and her symptoms to focus on. You, as carer, daughter, friend, are left standing by feeling pretty helpless because these are things beyond your control. The biggest worry I have as someone with MBC which is triple negative is the burden on my husband and how he is failing to manage all his emotions this time except with a kind of shutting down, as if, if my life is crap, so should his be. It breaks my heart that I can’t shift his perspective to match mine.

You are right about the internet. The more we read, the worse we feel. That’s why we always advise people to avoid Google. It’s not specific to your mum’s unique diagnosis and experience and it certainly doesn’t give a toss about your emotions because it has none itself. Secondary BC is unpredictable so you may read that life expectation is, say, up to 5 years BUT that’s only a statistic. Your mum has already beaten the odds so you know how misleading the data can be.

You say she has a small this and a small that. My CT scans frequently throw up small whatevers and then they aren’t mentioned the next time, as though they never existed. Obviously my treatment (capecitabine) has worked or they were small areas of interest, not lesions or tumours.  Your mum’s next treatment may well be the one that works for her in keeping it all contained, even removing some of the metastases.

You say you’re looking for some positivity. I’m a great believer that that word can do a lot of harm because it means that, when we feel bad, we’ve failed - we’re not being positive enough. I’m also against all those battle analogies we hear thrown around. A battle has a strategy and one outcome. It also starts more or less with a level playing field, something you don’t get with cancer. Cancer is much more than that. It’s a physical disease which the oncology team can deal with but there’s a massive underside that gets overlooked : cancer throws up a storm of emotions, most of them negative, and we bat them aside or feel ashamed or angry that we feel that way when in fact it’s perfectly normal. Bad feelings need to be processed, otherwise we aren’t in a position to find and enjoy the good feelings. I myself am beginning to battle with the anger side of the grief. Generally I’m being quite stoical - I can’t change any of it so let’s accept it and go with the flow. But I suspect my treatment is beginning to work less effectively and I can feel that anger deep down. My thoughts are creeping towards It’s NOT fair, why me? Finding ways to express this safely isn’t easy but it has to be done or it festers under the surface indefinitely.

Don’t forget yourself when you’re immersed in your mum’s suffering. Find people who understand to listen to you. Maggie’s Centres provide an excellent service, as do the nurses at the number above. You might ask your hospital if there are any carer groups they know of, because just being with people dealing with the same helplessness, the same distress is empowering. See if there’s a well-moderated Facebook group for people caring for cancer patients. But also, please don’t pressure your mum into thinking the way you think would help. If she feels sh*t and scared witless, go with that. Don’t urge her to be positive because sometimes we can’t and we’ve got to find our way through our own maze of emotions (and physical symptoms) without someone else’s being added to the mix.

She is very lucky to have you at her back. But don’t forget to look after yourself at the same time. You don’t feel positive right now. Of course you don’t: your mum’s been shattered by dreadful news and neither of you knows what lies ahead. Drawing on the experiences of the support groups I have, there is every reason to assume her treatment will deal with these outbreaks and she’ll be back to living with MBC pretty soon.

I wish her all the best with her new treatment.

Jan xx

Hi Rochelle

Thinking of you and your mum it’s a struggle I understand. I have mets in spine small dot on liver and in lung, tried fulvestrant and a tablet named palbocicib didn’t work next posin was capecitabine (chemo tablet) that hasn’t worked so now I have to have iv chemo. So there are many treatments in the cupboard and one will work, that’s what I have heard. 
what treatment has your mum had and I hope they have a plan for the next one. My tumour markers rose with each treatment I had what were you mums tumour markers, how much did they rise. TM are an indicated and she has small spots so the next treatment fingers crossed will get rid or reduce, maybe keep stable. I am also 52 and er positive.

Best wishes louise x