when your loved one refuses chemotherapy
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this is what I'm talking about, the chart shows that the risk is not to high to have brca1 gene at the age 60-75, cause in the family no one have a bc, but i do understand that she is the first and maybe i'm in a risk, but i think while she got her cancer at the elderly age, the disease just appeared and is not necessarily have a mutation gene..,
Thank you gals for your support and understanding! We all have a really hard time.
I am so worried about my mother that I had a pain in my chest/breast, although I did mammography for the first time last year and everything was clear.., anyway after reading a lot at the internet i'm so scared and have an appointment with Dr. tomorrow:)
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Yeh, i agree with you and Beesie
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godisone, I just have to say you are so lucky that your husband loves you that much! So sweet! Hope all works out for you with your chemo, but regardless, it sounds like you have a gem of a husband who will be right there by your side!
Bessie and Wrenn always have the most excellent advice!
Anijet, all I can say is be supportive of your mom. She needs time to process. Take notes at her appointments, listen to the doctors and give guidance but not pressure. Wishing your mom the very best!
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I have always supported and will continue to support my mother, I love her to madness, probably just now,I realized that I had to spend more time with her, and of course I blame myself for this..,she has not an easy fate and since my father is also sick, he suffered 3 strokes, she take care of him, even now..,
Anyway, she is very well held, ( of course panics every min brcause of every little thing) but very positive, says she will live for a long time, but at the same time she does not want to be treated, That's my Mom!
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Some updates about my Mom's decision:
My mother refused chemotherapy from the very beginning, but she wasn't sure, now after she practically re-read the entire forum, she is 100% sure that chemotherapy is not worth doing.
I wanted to show her that women treated and continue to live, but in all the stories she saw only the torment of patients
Anyway,she does not feel bad after surgery, she is given manual lymphatic massage
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I am sorry this wasn't the outcome you wanted, but I have to agree with your mother, it is her choice! I am sorry she isn't hormone + or that there isn't a test for triple negative that can predict who might benefit from chemo and who most likely wouldn't.
I am refusing mammograms. I am also seeking out mental health support. Perhaps your mom would benefit from that? I am not saying her refusal is due to a mental cause, but many if not most breast cancer patients suffer from mental issues due to the cancer treatments. I had breast cancer twice, 15 1/2 years apart. I held in a lot of anger the first time and find myself doing the same this time. I am seeing a social worker at the cancer hospital I am being treated at. She helped me so much during and after the surgery, and I thought I didn't need her anymore, but I find myself unable to let go of the fact that I agreed to what I had done and didn't go for a second opinion. (I wanted a BMX and was refused because of hospital policy)
I had chemo the first time and had a horrible time of it. Others have had it and were able to continue their normal lives with little effect. Thankfully my cancer was hormone positive so I had the oncotype test and that showed chemo would offer little to no advantage. That test wasn't available in 2003.
I was going to refuse the Aromatase Inhibitor, talk about reading horrible stories, go on any of the AI threads! I decided to "try it" and I haven't had any side effects! I don't notice anything different taking the drug.
I know how hard it is to admit you need to talk with someone about mental health issues due to having cancer, but it is well worth it. Best if the counselor has training specifically in helping cancer patients. If she would do that, she should go alone, so she won't hold back on her true feelings. I am not even telling anyone of my upcoming appointment with the social worker! Some things should be kept personal and she should share only what she wants to share. With a social worker, I know I will never have things I said thrown back in my face, especially things I said while feeling mentally stressed over the cancer! Please have your mom read this, she can privately email me if she wants to.
Being treated for cancer is the one time in my life I wished I had someone tell me what to do and I had no inclination to do otherwise. Unfortunately most doctors don't see the suffering their patients go through because of treatments. We must advocate for ourselves and sometimes that means going against what is recommended. It puts a lot of pressure on us at a time when we least need more pressure. While commercials can boast a "personalized plan" and a team approach, in reality we are lumped into standard protocols depending not on us, but on our cancer type. "Individual plans" are very misleading! We are ultimately the ones who have to individualize our treatment to fit us!
This is not about trying to change her mind, it is to support her as she makes serious choices. Ultimately the decision on any treatment is up to the patient. I think we know our bodies and what is right for us more than anyone else!
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Thank you Mavericksmom!
I agree with you, and I'm not going to put pressure on her, she's almost 72 years old, and she feels that she will not tolerate chemo, (and I basically agree with her) because of her allergic reactions to all medicines and some health problems , but as I mentioned, she is very positive, does everything around the house herself, walks,and does shopping, she is not angry at all (at least for now) and is sure that she will leave for a "long" time.
I hope that for some time it will be so, and when the time comes to "go to heaven" it will happen quickly and without pain
Also, her weight is 110 lbs, she said that if she will start chemo now,how much will she weigh? and she doesn't want to turn into a skeleton
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My dear Wrenn you are such an inspiration, thank you for all your kind words!
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You have such a supportive and sweet husband, and I am sure that you will undergo all the treatment with success and dignity. I can't help my mother, because she refused chemo, we didn't even meet with a CO, but I'm ready to support you. please let me know how it goes,you can pm me anytime. my prayers are with you!
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Hello Ladies, I haven't written since summer,but I read almost all topics all the time, in the continuation of the story of my mother, as you know, she refused treatment and underwent surgery, she felt very well, on December 23 pet CT results came - metastases in her ribs , in the hip joint, in the spine and in the liver 3.5 cm, and there are suspicions that there is mets in the stomach, she still refuses treatment and feels great oddly enough. I have a question- can aperson feel so good with mets?
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Hi!
Yes, a person can feel good with mets, but I would expect that as her mets progress that she will be in more pain (correct me if I'm wrong, Stage IV sisters). Since she refuses chemo, she may want to meet with someone who could help her with pain management when that becomes an issue later. Also, has she considered radiation? Sometimes, zapping mets can help reduce pain and help her to remain mobile. I understand about wanting quality of life, not quantity. There may be some things your mom can do to help her maintain quality of life at this point. ((Hugs))
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Thank you ElaineTherese,
We were at two Dr and they advised chemo and xgeva for bones mets, they did not offer radiation. I have another stupid question, approx how long she will feel good? is it 1 month? 2/3? before the pain starts.., Dr said that most likely the liver will fail first
I am mentally prepared ,and since she refuses treatment from the begining,I know that there is no hope, I just want everything to go smoothly, quickly, and without pain..
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Hi!
I have no idea how long she will feel good. It probably varies by individual and her particular pain threshhold. From what I gather, the symptoms of liver mets don't begin to occur until after the cancer has taken up a lot of room in the liver, and that can take some time to happen. Has your Mom considered surgery? If she only has one or a few spots on her liver, it might be possible to surgically remove them.
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she has only one met on the liver, Dr said it's pretty big 3.5 cm. The issue is,that she does not believe that she is sick seriously, cause she feels so good and energetic, and she refuses all treatments cause she is very allergenic almost on every drugs, she is very emotional and when i told her that she had a spot on a liver, she felt sick immediately and lost consciousness at Dr's office. I had to lie her after, and told her that it's just a small dot near the liver, she doesn't know about bone mets. I think if she finds out that her condition is so bad, and disease is not treatable , she will lie down and will never get back. For the first time in my life I don't know what to do, tell her the whole truth? treat by force? torment the last year so that she prolongs several months. sorry for my confused thoughts, but i'm devastated
I appreciate your help
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I know you are trying to be a good daughter. However, it's your Mom's cancer. Tell her the truth about the bone mets and the spot on her liver. She has to decide what she wants to do. Maybe, she will choose to do nothing. But, it should be her choice, not yours. Bone mets are very treatable, as is one met on her liver. ((Hugs))
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Anijet - My 79-year old mother was originally diagnosed with bone mets on her spine and hip at 78. She originally decided no treatment, but ended up deciding to do radiation (very tolerable to her) and is taking two oral medicines. This has significantly reduced/eliminated her cancer. She knows that this is not cure, but she's doing very well a year and a half after being diagnosed. Her 80th birthday is in April and we plan to celebrate big! Maybe if your mom understood that she could stop treatment at any time if the side effects don't agree with her, she might want to try. Maybe not, but just relaying my experience with my own mom.
Hugs,
Kathy
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I’m sorry to hear about your mom. I agree with ElaineTherese’s post. Be honest with her as that is the right thing to do. Remember, as long as all options have been presented to her, she is the one who gets to choose what to do or not. I do feel for you as I know my two adult daughters would be unhappy if I chose to do no treatment. Take good care
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Sure people can feel fine with bone mets, they really don't cause problems until they cause pain, usually from a fracture. You want to get ahead of that point, though, and seeing she has mets to the hip... That's not great. If she fractures or breaks the hip from mets at her age it'll be a tough recovery.
I'd concur about being honest and talk through her options and fears about treatment options. Maybe she is afraid of harsh side effects like before but there is potentially a different approach available now that can help and it won't be as bad. Or perhaps she is willing to do some treatments (xgeva is a monthly shot only that helps the bones and does do something against the mets) but not others (heavy chemo). Let her make the decision and be accepting of that decision too.
It's going to be a tough, tough conversation for sure, but she needs to know. You may also need to break the information into chunks for her to digest too.. Perhaps talk about treatment options after the first talk about locations, about how they can help her keep feeling so good.
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She's 71, not 110. Tons of people have joint surgery and broken bones in their 70s and recover just fine, so once the OP's mother gets past her initial fear, she may be amenable to some forms of treatment. And unless she has some form of dementia or other impairment, she should be quite capable of making up her own mind. I'd be more concerned that the doctors are writing her off as elderly and not offering her all the best choices for her care. That sort of ageism is definitely out there.
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I agree with all of you and appreciate your help, but you should know the character of my mother, she can't even handle a runny nose or some simple disease. Dr's offered her treatment from the very beginning, but she refused,she said that she couldn't bear it, I didn't insist, she is allergic to almost all medicines, you can't even imagine how difficult is to prove and explain her anything, so I hide a truth. knowing the nature of my mother, I am sure that she will die much earlier if she knows that she has stage 4. But I think about to try Xgeva or zometa at least at once.
I admire people who have the courage to go through all the stages of treatment, I know that she doesn't have to live long and just want her not to have a pain,and I hope that she will spend the rest of the days with dignity, while talking to her every day I myself don't believe that she's sick, at the age of 72 she looks like 55 years old, thin, mobile, energetic, she eats healthy food all her life,doesn't drink or smoke.One Dr said that only God knows how long she will live without treatment, the second said that she will live 2 years with chemo, and 1 year without chemo. I tried to explain her and advise her a treatment but her answer was that if she was young she would agree to treatment.Is it worth torturing a person for a year or more. to live a couple of months of life? it's a fuck#ng triple negative bc that needs an aggressive treatment
I can't believe this is happening to us, and despite the fact that I'm not a religious person, I want to hope for a miracle.
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Any doctor who gives an expiration date like that (and invokes religion!) should be replaced. If she's making her decisions based on that timeline, I don't blame her.
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Two years with chemo? Huh? That doctor was overly pessimistic. There are women who have lived for 10 years+ with bone/liver mets on this very message board!!! I understand what you're saying about chemo as "torture," especially for someone like your Mom who tends to have bad reactions to medications and treatments. However, as someone who did five months of chemo, it was well worth it. I'm five years out from treatment and feel great.
I still think lying to your mother is problematic. Yes, she may be crushed after hearing the truth, but you'll never know until you tell her. She may surprise you. She may be stronger than you think, but you'll never know because you're so busy protecting her.
Again, treatment is her decision. But, she can't make that decision if you don't tell her the truth and what her options are.
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hi ElaineTherese,
she knows that she has a cancer, she underwent a mastectomy, she knows that she has mets on her liver or "near to liver"she was told a hundred times that metastases can form everywhere and spread throughout the body, her answer was that mets will not spread and she feels fine and she's too old for treatment, (but looks young), what else needs to be said? you have stage 4 and let's do chemo and we don't know whether it will help you or not? her friend was treated for a year, but she died in torment, with no hair, no nails etc.
But I understand what you are telling me, that's why I feel so bad, because I lie to her, but on the other hand, I can't !!! tell her the whole truth.
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Unless you have legally been given control of your mother's health decisions, it is unconscionable that you are not telling her the complete truth.
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Agree with Alice, and why is it on you to tell your mom the whole truth and not her doctor? Is your mom in the United States? Doctors don't just not tell people truthfully the entire situation regarding their medical situation just because they tend to have hysterics over a runny nose. If you believe your mom will literally die because someone tells her the truth she is manipulating you with her dramatics.
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1. she cannot make an informed decision without knowing the truth of her situation
2. There are less or more hard core treatments. Some treatments are painless and fast, some are painful or long.
I would say, "Mom, the doctor can see that the cancer left your breast -- you have tumors in your body, though nothing life threatening yet. These spots can be treated in a variety of ways: A, B, C, D (surgery drugs, radiation, ablation, etc). Then give the possible benefits and side effects of each treatment, and see what she thinks is reasonable.
If she is dead set against conventional treatment, there are also some kinds of naturopathic treatments, such as high dose vitamin C IVs, which can have good anti-cancer activity with no negative effects. Some of these might have use to delay the progress of the disease.
If I was in your place, I would first try to help her know what her situation is, in clear/ simple terms, and second that it isn't an "all or nothing" choice when it comes to treatment.
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I completely agree with AliceB that it is unconscionable to not let her know what her health condition is.
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She knows that cancer is in her body,and it will spread sooner or later, and she knows that mets is in her liver, she does not know only about mets in her bones, but she still refuses treatment, we will give her Xgeva shoot, i hope she will pass it without side effects, and if not she will kick my as
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