My choice--refusing treatment
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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!
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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
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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
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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.
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hi dean
We are here to support you in whatever decision you make. Sending a hug to you! Chat anytime.
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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.
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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.
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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.
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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.
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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.
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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.
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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 medications0 -
How could there be statistics of those who opt out of conventional cancer treatment? Those women just move along and live their lives. They're not about to report to anyone. I agree…there will never be studies on those who refuse treatment.
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libelfree,
The post you’re responding to was made in 2017 and the last post on this thread was two years ago.
That being said, it would be possible to do a retrospective study on those who voluntarily refused treatment. It would likely be be a combination of self reporting plus, perhaps, any medical records that did exist for the patient. It would, of course, be difficult to eliminate confounding factors. Like any retrospective study, volunteers would have to be solicited and this is not an uncommon thing.It’s not so much a matter of those who refuse tx not reporting to anyone but more the reality of a cancer dx… the vast majority of patients do not refuse tx.0 -
I think I found MY kinda thread. LOL. Totally agree that there will NEVER be studies on those who refuse treatment. I mean why would greedy big pharma do that? Then no one will buy their meds and their piggy bank SE meds for those meds. LOL.
Having said that my torturous LITERALLY living nightmare hell of chemotherapy journey was a success I myself can't believe it that my tumor shrunk. But I STILL prefer NATURAL remedy, ALWAYS.
But… my kidney and liver numbers were dropping, my glucose is up to the roof, my hemoglobin is dropping and my onco said I am only 2 pts. away from blood transfusion LOL. But hey, my tumor shrunk. Pffft.
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I had lumpectomy surgery in 2017. But I did not agree to rads or hormone blockers. I am even on BHRT. Yep lotsa people here that would disagree with my decisions. But my medical oncologist supports my decisions. And my life is great! If it returns….it returns. But I just celebrated 7 yrs post surgery. And let me tell you the doctors were scaring me into rads and taking hormone blockers. My med oncologist at the time met (first appt) with my husband and I for probably a hour. In that appointment I told him….there are few if any studies on women with low grade low stage breast cancer. He agreed. So my treatment moving forward is regular scans….and because my tissue can be dense….ultrasound is included in that. I have chosen not to have regular MRI due to the gadolinium contrast that has mixed reviews…and now isn't used in Europe (when will the USA change their MRI contrast protocols!!?). So I am sure there are MANY people who will read this post and think I am crazy. But it has been the right decision for me. But I had to stand up for myself and what I thought was the right decision for me. It is sad doctors are so pushy about treatments. Not all breast cancer survivors should be put in the same box….just my opinion. Blessings to you all. I hope you are all doing well!
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I was on Verzenio (abemaciclib 150mg 2x daily) and Arimidex (anastrozole, an aromatase inhibitor 1mg 1x daily) for a month. Longest month of my life. Experienced five side effects: hot flashes, nausea, diarrhea, fatigue, and intestinal pain with little relief from Zofran (ondansetron for nausea) and Imodium (for diarrhea). Also, creatinine, calcium, and chloride are all high whereas they were normal before this treatment duo. Therefore, my oncologist told me to suspend Verzenio but keep taking Arimidex while awaiting more tests and deciding what to do next. I'm nervous because I can't envision another five months of Verzenio + Arimidex in a bid to shrink the tumor, not to mention 5-10 years after surgery to thwart recurrence. It all sounds insane to me, so I'm here to learn about alternatives. If the side effects of Verzenio + Arimidex can't be managed to tolerable levels, I feel I'll have no choice but to opt out of conventional cancer therapies. The thing about Verzenio that I cling to is that 3.4% of women on Verzenio + AI (Arimidex) had a complete response, or no detectable sign of cancer, vs 0% with an aromatase inhibitor (AI) alone. 328 patients were treated with Verzenio + AI and 165 were treated with AI alone. This means 11 women didn't need even lumpectomy after 6-9 months on Verzenio + Arimidex. I don't know about you, but that number is encouraging to me.
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jons_girl What does BHRT stand for? It's not in the glossary. Thanks.
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exbrnxgrl What do you think happened to this thread? Why does it have so few recent comments?
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In a nutshell? Very, very few people who are diagnosed with breast cancer refuse treatment. We have had a few members over the years who have refused treatment but fewer than I can count on one hand. We even had a member who refused to see a doctor for a formal diagnosis (though she did indeed have bc).
I don’t know if this is representative of breast cancer patients as a whole, they don’t all belong to bco, but I would imagine most people do not refuse treatment.0 -
It means bioidentical hormone replacement therapy. And it’s not well accepted here as most people are blocking their hormones on this site.
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Threads also get ‘lost’. So when someone brings back a thread there is more comments added to the thread usually in my opinion.
however there are less of us here who choose not to do conventional BC treatments. But we are here. I’m one of them. I did have surgery tho.
I don’t know what your stage and grade of BC was/is as you don’t have that info in your signature line. But if I had been stage 2 or 3 my treatment choice I’m guessing would have been different.1 -
Hi. I've just found this thread. Maybe it can be revived. I am recently diagnosed with stage 1a triple positive. I refused neoadjuvant chemotherapy, as is the "standard of care" and went straight to surgery. I am not refusing all treatment obviously, as I have had surgery. Surgery showed a 1 cm mass, that was removed with wide clean margins and no lymph node involvement. My surgeon said at this point, i am NED. I met with one MO whom I did not like, and now have found one that I do. It has been suggested that I do 12 rounds of taxol, along with herceptin every 3 weeks for a year, radiation, and AIs. Lots of treatment for someone who is NED! I told my MO that I do not want chemotherapy, but I am amenable to the herceptin. He has agreed to do that if that is what I want. I have a 2nd opinon appt at MD Anderson in a few weeks. They are doing a trial there, called the Adept Trial, which is treating early stage triple postive with only herceptin and followed by hormone blockers. They believe this "de-escalation" of treatment will become the new standard. There is another trial, called Persephone, which shows that 6 months of herceptin is just as good as 12 months. So, the "science" can def be questioned. I haven't decided yet on what other treatments I will accept, such as radiation and AIs. Probably neither. Wondering if anyone else is in similar situation, maybe accepting partial treatment with triple positive. I am also doing supplements that may be controversial-ivermectin, quercetin, fenbendazanole, apricot kernels, and other vitamins. Figure it can't hurt.
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Thanks, All, for reviving this thread! @cupcat, so much really depends on the specifics of the cancer, as well as your age, pre-existing conditions, etc, how aggressive they want to be with your treatment. Of course, each person has to make the decisions that are best for them.
As for the ivermectin, quercetin, fenbendazanole, apricot kernels, and other vitamins, we'd only recommend that you let your treatment team know, or work with a doctor that specializes in complementary care. Important is to make sure it's compatible with any other treatments. A specialist could help you determine what could be most beneficial.Thanks for sharing here, and welcome to our community.
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Cupcat, the trial sounds very interesting and you are lucky to have a doctor who is willing to be flexible. I was initially diagnosed Her2+ by core needle biopsy and saw a surgeon and support team I really liked at the University of Texas Southwestern medical center in Dallas. When my instinct told me to refuse the usual Herceptiin - Perjeta (and, 8 years later, I can't recall the rest of the protocol? TC? ) neoadjuvant care, the nurse coldly told me that I couldn't have my surgery there. When I went forward with another surgeon, surprise! The solid tumor pathology showed Triple Negative cancer instead of Her2+ so I ignored my instinct and pursued ACT chemo.
Chemo saves many, many lives, but it ruined my quality of life for a relatively modest improvement in survivorship. I'm still here 8 years later, but was it because of or in spite of the chemo? I wish you the very best, but stick to your guns!
Lyn
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I became acquainted with a gentleman who held the record for the largest tumor known to the Kidney Cancer Association. Told there was nothing left to do for him, he embarked on a campaign of mind-body "medicine." He died 20 years later of old age. Has anyone here done mind-body or "guided imagery" complementary to your conventional treatment? I'm trying to find narratives on YouTube and elsewhere that are specifically meant for cancer imagery, the immune system, etc.
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