Was hoping for some advice for my mother, who as I previously posted, is in the middle of her chemotherapy (3 rounds of paclitaxel/carboplatin) and who recently had an aborted debulking surgery after it was found there was a tumour sitting on her large intestine that would make surgery too dangerous at the moment (doctor wants to look and see after 6th treatment). She is currently recovering from the incision, but with the combination of chemo and now the wound from being opened up, she is really struggling with her care: she is more physically drained than ever before, often feels like giving up and is under immense emotional distress, and feels like if she takes any more chemo right now she might not survive.
We will be consulting with her oncologist and hoping for referrals for her care; but in the meantime, she has gone to a naturopath and has been recommended a whole host of treatments that she hopes will help her improve her overall health (including, for example, large injections of B12 and other supplements to help with cholesterol and boost immune system etc etc). She does not view these as alternatives to treatment but as means to help her body to recover so she can manage more chemo. In this context, I am a bit frustrated that she is not willing to do this in consultation with her oncologist/primary care team, as I am worried the recommended treatments may come into conflict with her chemo in different ways that are unpredictable. I have tried to encourage my mother to let the doctor know her plans with the naturopath, but she is very resistant to this as she feels the oncologist has already 'closed her mind' to other treatment plans (even though this is not being viewed as an alternative to the primary treatment). I find this really distressing, but I can't really push further as it is causing my mother distress when I do, as she really doesnt want to tell her oncologist.
I am not sure what to ask here, but I would be grateful for any advice.
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kcha237
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tl;dr: To keep it short, my mum wants to undergo various treatments/infusions with a naturopath to help her body get stronger as she struggles through chemo (NOT as an alternative to it), but doesn't want to tell our oncologist as she feels the oncologist is closed minded towards other forms of complementary health treatments. I am worried that doing this without cooperating with her primary care team is dangerous.
Bit of background I’m 2 yrs post dx 19 months post chemo. I told my consultant during a check up yesterday that I found evening primrose oil was taking the edge off of my hot sweats whilst I am waiting for a menopause specialist appointment. She immediately told me to stop taking them as they can emulate estrogen!
I never dreamt EPO could be potentially harmful to me, so 100% your mum must tell her oncologist what she intends to take. They might say it’s fine but she has to be sure.
Best wishes for your mum and I hope these symptoms ease soon xx Jen
thank you. Its frustrating, the naturapath recommends things like nicotine patches, amino glutamine, and agrimseng (which costs thousands of dollars) and I tried to explain to her that I was worried about how these things might affect her or interact with her primary care treatment; but trying to convince her to tell her oncologist is an uphill battle and we are both getting extremely distressed trying to convince each other that it is ok/not ok to do this without informing the oncologist. I dont want to create more hurt and upset, I know she is really struggling, but I don't understand her distrust at all, she seems convinced that if she tells the doctor that she's going to do this with or without her approval, the oncologist will 'stop trying to do her best' to help her. I just don't know how to be a support person in this situation, i can't get behind her desire to go behind her primary care team's back
It sounds like your mum hasn't given up, if she is seeking alt treatments she still wants to get better. Chemo and surgery are grueling. You can feel helpless and out of control.
Regular gentle physical activity and a diet with lots of whole foods can help. As well as activities like journalling which can help deal with the anxiety that comes with having cancer. It can also be something your mum will feel like she can control and can do to help her own healing.
Can you suggest she gets a consultation from a nutritionist and trainer who specializes in cancer? There are studies that show that physical activity can help people get through chemo.
Would your mum consider a second opinion from a different oncologist? If the reason she won't tell her current one is that she doesn't have trust in them, you mention that she feels that they have 'closed her mind to other treatments.'
It could help to find an oncologist who can explain their decisions so your mum can understand the bigger picture.
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