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My choice--refusing treatment

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  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
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    Jon's girl,

    Nothing was missed in my original dx. All my imaging clearly showed my breast tumor. There was no reason to suspect metastasis which is uncommon, about 6%, at original dx. So, nothing was missed, overlooked, etc. My situation was simply a weird fluke as is my 10+ years of progression free survival. Sometimes, odd things just happen!

  • jons_girl
    jons_girl Member Posts: 444
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    hi Exbrn:

    yes sorry, I probably should have said what I meant differently. There are quite a few on this site like myself, who stuff wasmissed with diagnostics. And fluke things happen like your situation, yes. But a lot of that happens. All you have to do is take a hour to read peoples stories here. It's just sad stuff happens like that. I know it's life. But we as a society with all our knowledge should be able to do better to catch stuff. 💐

    Have a wonderful day. I'm so glad your 10+ yrs out from dx

  • Dean75
    Dean75 Member Posts: 4
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    I have been looking for a place to land, and it may be here. I was diagnosed last April with a grade 2 infiltrating ductal carcinoma of 13 mm, Er,PR positive. I was first on anastrozole to try to shrink the tumor. I refused chemo, having watched my 28 year old daughter suffer through treatments for cancer of an unknown primary. She did not make it. I never wanted anything to do with endless treatments, but had a mastectomy on the right and lumpectomy on the left. I was talked into radiation by my breast surgeon. I am still on anastrozole which doesn't seem to be working. The cea test was elevated on my last blood test. The oncologist said to do a ct scan. That was on 6/20/22. It showed lymph node enlargement on the chest wall and something in the lumbar region which may be bone metastasis. So the next test would be a PET scan, but my oncologist already believes that the cancer has spread, and I am in stage 4. After the PET scan, he is recommending a broncoscopy and then Ibrance. I don't want to do either. The side effects of Ibrance are just something that I could not tolerate, but I am also afraid of making the decision to do nothing. It affects the whole family, and I just wish they my son and daughter would not have to go through this again. They watched their sister die from cancer. One more thing. I am 76. This is my first post, so I may have screwed something up. Apologies in advance.


    Dean75

  • elainetherese
    elainetherese Member Posts: 1,632
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    Hi Dean75!

    I'm sorry to hear that your oncologist believes that you may be Stage IV. You may want to check out some of the Stage IV threads like the one about Ibrance:

    https://community.breastcancer.org/forum/8/topics/828848?page=2696#post_5757942

    Or, maybe bone mets:

    https://community.breastcancer.org/forum/8/topics/789492?page=2708#post_5757489

    You certainly have the right to refuse any treatment you don't want. However, it may help to discuss such decision making with someone else who has had to decide about Ibrance or how to treat their bone mets.

    I myself was Stage III with triple positive cancer. I did the works -- chemo, targeted therapy, surgery, radiation, ovulation suppression, and an aromatase inhibitor. But, that was my choice.

    ((Hugs)) Good luck, figuring out what is right for you.

  • jons_girl
    jons_girl Member Posts: 444
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    hi dean

    We are here to support you in whatever decision you make. Sending a hug to you! Chat anytime.

  • smc123
    smc123 Member Posts: 38
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    Dean, I don't know if what I have to write will be helpful to you but my own mother decided not to seek treatment when she was diagnosed with pancreatic cancer at 75. She knew my own treatment for breast cancer was manageable but she was not up for a “whipple" surgery and the follow up treatment. She immediately entered hospice and our family really did not know what to expect. We were blessed to have another 8 months with her and surprisingly her pain was managed with Advil up until the last few days of life. I don't want people to take this wrong but I thought her decision was very brave and left me grateful and inspired how peaceful her last months of life were.Good luck.

  • sondraf
    sondraf Member Posts: 1,631
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    Hi Dean - you did well on your first post!

    Do come round the bone mets and Ibrance threads and hash out your fears with some of us who have been on the treatment (or still are) and have similar mets locations. We've got ladies in the 5+ year club on Ibrance and doing well, leading active lives. Once the dosage is dialed in, it can be an extremely easy drug to take, once a day.

    However, everyone has their personal reasons for treatment, limits as to how far they may want to take conventional treatment, or if they want to forego completely. We had one Ibrance taker in particular who was absolutely adamant that she would let go once Ibrance failed her, that she was not willing to try treatments beyond that drug given her past experience with IV chemos. That is another possible approach/consideration.

  • elderberry
    elderberry Member Posts: 1,067
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    Dean: Hi! I am puzzled why your MO doesn't want to do a PET. It would help confirm where the mets might be and that could change treatments as well. As for not doing treatment, that is up to you and your wishes need to be respected. I am about to turn 72. I plan to continue my treatment as long as it is working and I am feeling okay. Quality of Life at Stage IV.

    Wrenn is so right. Talk with loved ones. Maybe talk to a therapist. Consider trying treatment first.

    Do check out the various threads on the BCO site.

    I wish you the best in whatever you choose to do.

  • Dean75
    Dean75 Member Posts: 4
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    To everyone who responded, thank you so very much. I will check out the stage 4 threads and see what people have experienced. Thank you elainetherese and sondraf. My onc has a tendency to downplay side effects. The fact that it affects the immune system is the scariest part. I happened to my daughter, and she ended up having to take shots of neupogen. She was on many chemo drugs. I do need to talk more to my kids, but, I know, that there are a lot of things that they don't want to hear.Thank you, wrenn. My daughter does not want her kids to know that I have cancer. SM123 I appreciate your story about your mother. Thank you for your support and hugs jons girl.

    This morning I made the appointment for the PET scan. It will be on 7/14. Then the next step, whatever that may be. I just want to be comfortable with whatever decision I make.

    How do you handle the fear and anxiety? I was doing okay until that last conversation with my doctor, and the seeing the ct results. It has taken over everything. The only thing that helps is xanax, but I am also on Zoloft.

    Again thank you to everyone. Happy 4th.

  • Dean75
    Dean75 Member Posts: 4
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    elderberry my oncologist does want me to do a PET scan. He has also mentioned a bronchoscopy after the pet scan and then Ibrance. The ct scan indicates that the enlarged lymph nodes are by the chest wall. I read that their size indicates malignancy. I know nothing about bronchoscopies. I have also read that the price of Ibrance is ridiculous. I didn't expect that there would be anything going on with a possible bone metastasis, but that is another possibility. Going to work in the garden and try to forget about all of this.

  • elderberry
    elderberry Member Posts: 1,067
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    Dean: apologies. I misread the info about the PET. I am glad you are getting it done. Please keep us posted. As for the fear and anxiety. I wish there was a quick fix. You just have to do whatever it takes to keep the lid on. I used Ativan twice a day for almost a month. Having come to terms (as best as anyone can) with the DX and the treatments I only use it occasionally. Well, sometimes once a day for a few days straight and then not at all for weeks. I hope being out in your garden helped.

    We are here for you.

  • fathea
    fathea Member Posts: 33
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    your not alone


    when I was with mom in the doctor clinic I saw one patient refusing treatment and she only comes for mamo and follow up only.


    I was told she was diagnosed 10 years back and did nothing no surgery no medications