One of my relative was diagnosed with her2+ Metastatic breast cancer with cancer spread to liver and lungs. She was advised 6 cycles of taxol+carboplatin + herceptin + Perjeta, followed by herceptin and perjeta until progression. But, as she didn’t have insurance, she refused to take this treatment, primarily due to the cost involved, approx Rs.3,50,000 ($6000) per cycle. She chose alternative treatment from some place in south India, but unfortunately it was not effective and she succumbed to cancer within 6 months in December.
Now, am finding it difficult to handle people comparing and telling directly to me or my close ones that am lucky to have the financial resources to fight the disease. This is making me feel terrible and low. Don’t know how to handle this.😐
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mbcfrom2017
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Yes some of us are so lucky to have good insurance. I feel so bad for people in this position Having to make choices on there treatment due to insurance.
Try not to feel guilty, we don't know if that the treatment recommended would have made a difference in her case.
We are all just trying what we are told to try and every day is a guessing game. We all take pretty much the same cocktails and they work on some and others need to try something else. We don't even get the same side effects from the same meds.
It is sad that her treatment did not work but no treatment gives a guarantee,say a prayer that treatments work for more people than not.
Try to enjoy the time we have.
Hope you feel better. This was not something you should feel guilt about. We all do our best.
Thank you ladies for your support. Am not sure if I will get over this easily, but this group always reassured me there are bunch of wonderful souls who “understands “ my emotions fully. As someone said in an other post, am one of those passive readers searching for messages and situations similar to mine and elevate my thoughts. Thanks again 🙏
I am so sorry that people are dumping on you. Guilt is not a helpful emotion for you in this time of healing. She made her life decisions and you continue to make yours in good conscience.
Hi,
I'm so sad to read about your recent bereavement. That is hard enough with this disease without the unkind actions and words of others. When my mum died from cancer in 2004 some of our relatives blamed me and said I had not taken proper care of her. That wasn't true at all, but the hurt doesn't just go away. You mustn't blame yourself for what has happened as you did not do anything wrong. Please know that you can reach out to me if you want to chat.
Take care,
Sophie ❤
They may think they are being thoughtful by saying it’s good for you that you have insurance. But none of us feels “lucky” about this. As my husband said a long time before my diagnosis,when making another observation about human nature: People with bad manners don’t realize they are relying on others with good manners to not point out they are dolts. 😀 Don’t feel the least bit obligated to have to explain yourself to anyone. Hang in there.
When a death happens, it certainly makes us all take stock of things. However, which one of us on here is lucky? Not a soul! So mbcfrom2017, you have nothing to feel guilty about.
You just keep living your life and try your best to have more good days than bad.
Dear mbc from2017 Please don't feel guilty! There are ways to afford treatments! Believe me. It takes effort but there are ways to get the treatments that we need. It was her choice to follow the route that she did. Feeling guilty takes too much energy away from your own survival.
From personal experience, who ever "the people" are who are attempting to make you feel guilty for taking care of yourself insurance or no insurance...
They/people are the ones who are dumping their own toxic guilt onto you. This is not your guilt to bare it is theirs for not stepping up and supporting your relative with all their repressed should of, could have, would have's.
It's time to make a choice to remove these folks from your life.
It's hard work and it's a challenging job to take care of yourself "alone" with MBC. I say "alone" because MBC is in your body not others.
I'm living in poverty and I have the best insurance because of that fact.
I am successful with surviving MBC only in my bones from embracing my condition and new limitations because MBC is a part of me now.
Making the decision to envision my Ibrance and letrozole as healing light every time I take it after dinner has created positive results.
The tumor in my breast has shrunk from 1.3x1.2x1.6 cm to 0.8x0.6x1.1 cm. That's from a January 2019 mammogram. The last one was March 2018 when I was diagnosed.
My scans have gone from no spreading with continual diminishing to no spreading to barely discernible. That is from my Jan. 2019 scans, I have scans every 3 months.
What I eat, how I prepare it, never pushing myself and I know the biggest advantage is living alone and isolated from everyone.
I see folks at the bank, the grocery store, on errands and I have lovely conversations. I speak with a few friends over the phone weekly and that keeps stress out of my life.
It was determined that my Tumor Marker jump of 20 points in Dec. was caused from running into a family member who caused my PTSD.
The next CBC indicated the tumor marker dropped back down 18 points and all my scans and mammogram indicated positive results. My TM in Jan. was back down to 23 and I'm waiting for my Feb. results.
I live on $797 disability a month with a small occasional sale from my easy vintage shop.
My Medicaid and Medicare covers everything.
So your relative, did have options where ever she lived that she may or may not have chosen to pursue.
It does take a very aggressive and assertive strong will to continually advocate for yourself.
Do I care if anyone thinks I'm nuts... NO. My life is far more important then anyone's uninformed opinion of me.
I work on building self confidence every single day.
If you choose to hold on to the guilt projected towards you, that is your choice.
I'm advising to let it go and to go into therapy for extra support, I benefit from bi-weekly therapy for my PTSD.
Hope this has been insightful as I intended it to be.
You can heal yourself with a positive attitude by embracing your diagnosis rather then perceiving MBC as a terrible thing.
Dear Survivor Guilt, I understand from the post that you are from India. It is my understanding that health insurance is either not available in India or very rare. Health care systems like Medicare in the US, or national health in Europe do not exist. I am so very sorry to hear about your cousin. To deserve guilt, you have had to do something wrong. You didn't. And yes, those comments would make somebody feel very, very sad. Maybe the best way to handle the family comments would be to say how very sad you are that she succumbed to this horrible disease as you know first hand how terrible it is. And yes, you feel extremely fortunate (as luck in this case probably has nothing to do with it -- it is probably because of very hard work) to be able to receive the treatments that you do each and every day. And that you go to Temple and thank Ganesha(?) for your ability to pay. And then add that you are hopeful that they will be able to give you support as you navigate your way through this as their support is indeed, very much needed.
But you did nothing wrong. Please don't feel guilty about this. Sad, yes. Guilty, no.
Margaret- yep I’m from India and you said it right, Ganesha is my beloved ☺️. Thanks for your message and thanks to the ladies replying to this post, I never thought words had so much power and am feeling very positive after reading all this.
mbcfrom2017 -
I read your post first thing this morning and it took me a while to gather my thoughts because there's just too much unfairness in the situation. Most notably, the fact that your relative could not afford appropriate treatment. I really hate the world sometimes. And then your bad feelings about this...as the others have noted, the last thing you need right now is to be feeling low and guilty.
I do have one small idea for you...is it possible that you could reduce your guilt by taking some sort of action to help others in your relative's situation? Advocating for a political candidate or law? Promoting some fundraising effort? Volunteering a few hours someplace?
Easier said than done, I know, but If even some small positive change could come out of what happened, it would honor your relative...
LynnFish - thanks for you wonderful idea. my husband too suggested something similar and both of us are volunteering to be part of the awareness campaign organised by the Rotary India , which involves campaigning about various financial avenues for people who cannot afford the medical or education expenses. Eagerly waiting for Sunday for my first session.
Just tell them that yes you are lucky to have insurance and then change the subject. They are correct, you are lucky and they may not mean to imply that you should feel guilty that your family member did not have your luck. If they did mean to imply that, the rudeness is totally their problem and you shouldn’t have to feel bad because they are rude. If they continue to press the subject tell them you feel unlucky to have a person in your life that wants to make you feel bad and then walk away.
Sister/warrior I am so sorry for the loss of your relative, but I don't think you should feel guilty. I felt guilty years ago for not being there for my cousins wife who was diagnosed years before I was diagnosed. She helped me in ways no one else could have. She is now an almost 30 year over-comer . We all have a time to be born, and a time to leave this physical world. Concentrate on you , and nicely call, text, or e-mail your family,and communicate how it makes you feel to here those types of comments. Tell them you need them to be positive, and encouraging. Make a list of the things they can do to help you on this healing journey. I don't think they mean to make you feel guilty, or bad. If you think counseling can help do what you need to do to live your best life. God bless you Sister, and yessssss Warrior. We stomp on the serpents head. If God is for us who can be against us. Keep the faith. XoXoXoXo
Thanks sister. After seeing me low, my husband started counseling everyone around on how to talk and what not to talk to me.. it sounds funny but am elated to see his affection and care 🙏
The saddest part about your story is that your relative's oncologist did not reach out to the pharmaceutical manufacturers that produce the drugs that were recommended for her protocol. Most of these companies will provide financial relief to prevent those who can't afford the medical costs from being unable to receive treatment. No one without financial means should have no access to care. This is the real tragedy and has no bearing on the fact that you were fortunate to be insured. It's like comparing apples to oranges. Try not to let ignorant comments crush your spirit. You are blessed by "cancer sisters" sharing your journey and empathizing with everyone's challenges. Hang in there! Love, Linda in Seattle XXOO
Linda- “cancer sisters” , in the last couple of days this is the overwhelming feeling I’m getting.. suddenly I feel there are too many well wishers for me 🙏
Sadly, health insurance is a privilege and not a right in the US. I am quite surprised that she couldn’t get on her state’s medicaid program! Or have a fund-raiser or beg for money on the side of the highway! Don’t laugh, my friend used to get her nursing school tuition this way and it used to take her around 12 hours to gather the $3,000. Point being that where there’s a will...there’s a way. You are not responsible for her bad decisions. She did what she wanted to do which is an alternative treatment in India which she managed to fund!
I’m from India and health insurance almost do not exist. Agree to your point where there’s a will there’s a way. Both me and my cousin are from same financial background, but the difference is my husband 😍, I have no idea how is managing to continue the treatments for me and he doesn’t wants me to worry about money any day. He keeps saying with the amount of friends and good will gathered over the years, money should never be a problem 🙏
Hi, you have nothing to feel guilty for, did you create the health care system in your country? You personally didn't deny your relative the treatment and even if she had had access there are no guarantees. Ignore what is being said, people are insensitive and probably have no idea what you feel they are implying. Living with this is hard enough, don't let others make it harder for you.
Remember they are all also part of the health system that exists in your country so just as guilty or innocent. Do you think they are suffering from survivor guilt? Grieve for your loss but stop feeling responsible because you can't be.
I totally 'get that you feel guilty and that's on top of your sadness for your loss! I'm 68 years old and feel a little guilty every time l here of someone much younger than me having this disease, every time a mother of young children dies l feel awful and think I'm older it should be me not them! If l didn't have insurance from where l had worked l would be dead now because l wouldn't have been able to pay for the medicine I'm on.
How do l handle this guilt, it's a lot like the guilt of other social injustices and wrongs - maybe we ourselves aren't very guilty when it comes to unequal care, racism, poverty . . . but we are part of society and have to own these terrible wrongs, so l pray, vote my conscience, speak up for others - of course it doesn't feel like enough.
Take care, if the same people keep telling you how lucky you are maybe it's time to ask them to just stop - that you don't feel lucky at all that your cousin died that you are not lucky at all to have a disease that one day won't respond to meds and will kill you.
I am so sorry that you have to go through this with a guilt feeling.. My aunt always tells me each MBC is different for every person.. I believe.. no matter what.. God has a plan for us all.. May God give you peace & take away the unnecessary guilt you are having..
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