My mum won't accept treatment

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smutst
smutst Member Posts: 4

I feel so angry, and guilty for being selfish, but I don't know what to do.

My mum is 47 and she was diagnosed with breast cancer last month (we don't know the stage, but it's grade 2). She had a mastecomy a few weeks ago and during the operation they removed some lymph nodes but they were clear. Her doctor wants her to have radiotherapy and the oncologist suggested chemotherapy too, because she's still young and it'll give her a better prognosis for long-term survival, but now she's saying she doesn't want either treatment. I feel so angry, and I feel guilty for feeling like this when really I know she needs my support, but I think she's being selfish and right now I don't even want to be around her. I know that sounds horrible. She said from the start that she wouldn't take chemotherapy, but she only decided yesterday that she doesn't want radiotherapy either, because her oncologist mentioned the possible side effects (tightening of the chest and a slight loss of bone density in the ribs around the area being treated - more superficial than a mastecomy, which she agreed to, so I really don't understand). Whenever I confront her about it I end up making her cry, and it makes it difficult for me because she's asking me to respect a decision I don't understand and that she won't explain to me.

She also has anorexia, and I think part of the reason she's refusing treatment is because she knows she'll need to gain weight to be able to handle something as physically draining as chemo. I know it's a manifestation of depression, but no one talks about it (her doctors have mentioned that she's 'slim' and might need to gain some weight, but they always say it jokingly, like they're tiptoeing around an awkward conversation) and I feel like she's prioritising vanity, or whatever it is, over her life. I've been confronting her about it for years, and I accept that it's something I might not understand, but I still think she's being selfish. I don't know if that just makes me cruel, or if it's valid, but when I try to talk to her about it I just make her cry, so I stopped trying.

I'm 20 and I just left university, and we both live in rented accommodation. I know I'm old enough to look after myself, but I feel lost. I understand that ultimately it's her decision, and her body, and her life, but I don't know if she even understands the risk she's taking. Most of the time when I ask her why she doesn't want treatment she shrugs and says she can do what she wants, or she'll say 'they've taken out the tumour, so I might not even have any cancer left'. I know there's always a risk of recurrence, but can that be true? I feel like if I don't push her to accept treatment and just respect her decision, that I'll be advocating her killing herself. She's still young, and there's no sign that it's spread (so even if there are some cells left they can be treated?), and she's giving up her chance for superficial reasons, or if I'm wrong about that, then for reasons I completely don't understand. I don't want to be angry at her, and I'm angry at myself for handling this the way I have. I know this is probably harder on her than she's letting on.

We don't have other family in the UK, and she does have a lot of friends who have been incredibly helpful and supportive, but she's moving away in a few weeks because she wants some space. She's a very private person so it wouldn't surprise me if she hasn't been totally honest with me.

Thanks for anyone taking the time to read this. Any advice or suggestions would be greatly appreciated, be as honest as you like.

Comments

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited March 2013

    Step back and realize that it is indeed her life and you can't live it for her, nor feel what she is feeling inside. Your anger may be because you feel she "owes" you more? I would try to get help with that before you can be clearheaded enough to support her. Is it also possible that she feels your pressure and is clamming up as a result?  

    The worst thing that a person with cancer --especially one with coexisting psychiatric conditions (like an eating disorder) can go through other than the illness is facing criticism, implicit or otherwise, from loved ones. That makes the situation infinitely worse. Sometimes the hardest part of love is knowing when to give others space and not project one's own fears onto them. More easily said that done but worth considering. Just let your mother be your mother for now.

    ETA: It's also important to keep things in perspective. Your post title says that your mother won't accept treatment, but that isn't accurate - she has accepted it. She has undergone surgery, which is not only first-line treatment for early stage cancer but usually has the best outcomes. Anorexics crave control over their body. It must have taken some courage for her to endure what she did.

    I wish I could say more to dispel your unease. Unfortunately, cancer has casualties that go beyond the patient. Good luck to you.

  • Leah_S
    Leah_S Member Posts: 8,458
    edited March 2013

    Smutst, your mother has to know herself what she's willing to tolerate and what she's not. Chemo and radiation are both very difficult treatments with possible long term (even life-long) side effects.

    Since she's had a mastectomy and her lymph nodes are clear, she falls into the "grey area" for those treatments, and refusing them is not a medically terrible decision.

    I think you should explore the reasons you feel anger, so you can get past it and support your mother even if you disagree with the reason for her choices.

    Best of luck to you and your mother.

    Leah

  • cheryl1946
    cheryl1946 Member Posts: 1,308
    edited March 2013

    Metformin is supposed to help prevent recurrance. It is a drug for diabetes, and was found recently to have cancer fighting properties. Do you think she might try that?

    In the end, it is her life and her decision. I wish you both the best.

  • smutst
    smutst Member Posts: 4
    edited March 2013

    Thanks for your replies, and for being honest. I think I needed to hear it from someone else, I'm going to apologise to my mum and support her decisions.

  • Chris13
    Chris13 Member Posts: 254
    edited March 2013

    Can she get testing for the tumor, which here is called an oncotype? That tells how likely the tumor is to have spread. I had a mastectomy and low oncotype scores for two of my tumors. That showed chemo would not be very helpful. I'm not sure why radiation would be considered when your mom had the mast and clear nodes. It was not recommended to me, even after they found one positive node.

    I think you can continue to read other posts here and get a better sense of treatment and refusing chemo/radiation. There are medications many of us take to reduce the chance of recurring cancer: tamoxifen for the pre-menopausal and anastrozole for the post. These are usually recommended....so you may want to look into this and find out why the drs. haven't mentioned these meds. They do have side effects, but most women tolerate them well (as I have.) You will see those posting on these boards that do have problems, but remember that those without issues don't bother posting.

    We are here for you and your mom, so hang in there. 

  • smutst
    smutst Member Posts: 4
    edited March 2013

    Hi Chris13,

    Just looked up oncotype, no one has mentioned it yet so maybe it's not an option on the NHS, but I'll definitely look into it. I think the radiation was recommended because the tumour was quite far back and close to the tissue behind it, so they just wanted to be safe, and they've prescribed tamoxifen as well which I think she'll start taking soon (sorry, forgot to mention it in my original post). Thanks for the advice and support- it's really been helpful.

  • dreaming
    dreaming Member Posts: 473
    edited March 2013

    I had a friend that did not want any treatment and had only palliative care, I understand how angry you are, I have with the medical team many times  tried to convince a patient to have treatment, some they do some do not. It is frustrating but one can not make a person change when they do not want.

    Being anorexic your mom has an image problem, and she needs counseling, for you , I might sound cold, but there is only so much you can do,you can not feel guilty or that you are not doing enough. I learned this with mt friend, she chose her path.

    Go back to College and let her live her choice,believe me I had moms of small kids that preferred not have chemo than loose their hair.

    You do not need to apologize to your mom,she is lucky to have a caring daughter, just support her what ever her choice is , live your life and show her you love her.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2013

    I agree with much of what everyone has advised. BTW, anorexia is not about vanity. The issues are far deeper than that. Best of luck to you all.

    Caryn

  • smutst
    smutst Member Posts: 4
    edited March 2013

    Thanks again for your responses!

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