My choice--refusing treatment
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I have been ridiculed by others but I won't be intimidated I made a choice and people have the right to know my results.
I know YOUR story. Well good for you I have the right to tell it.
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Cat5 - totally agree that the treatment for early stage breast cancer is so dramatic, I think it's why they keep trying to come up with new ways of treating (tamoxifen vs chemo etc., but even tamoxifen is a 5 year plan at a minimum!).
You need to go with your gut, do what feels right for your body, and go with it. I did the lumpectomy followed by radiation, did not do or need chemo thanks to a low oncotype score (thank goodness!) and just started the tamoxifen hormone therapy. That said, mostly I'm doing that because I had positive nodes. If I was stage 0 like you, I might consider changing up my nutrition and exercise letting myself heal naturally.
It's your call based on your unique case. I can say that radiation is not so bad, I went through a very full 30 sessions with barely any side effects, it was fine. I can also say that lots of people forego the 'traditional' treatments but do change up their nutrition/exercise based on their learnings on what is known to help heal breast cancer (cool site foodforbreastcancer.com). Suzanne Somers did lumpectomy and radiation but nothing else. Look up Theresa Dinallo on Google who is 6+ years cancer free and did nothing, not even the surgery, and healed herself naturally and really believes in it.
Ultimately it's up to you, just do lots of research and feel good about the path you decide! Different paths have merits and risks and it's all up to your personal risk/benefit scenario. That's how I weighed it for me. Chemo was not worth the major risk of side effects, neither was an additional axillary node surgery in my case, but I felt the lumpectomy and radiation was worth it, and I feel tamoxifen is worth it as well even though I'm concerned about the side effects, but my personal risk/benefit calculation landed on me giving it a go.
Best of luck and keep us posted on what you decide!
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pv thx for your reply- reconsidered & going w/mastectomy (both ,even tho its only one side) and immediate reconstruction. best to you & be fierce!
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Meow13,
When you wrote "I know YOUR story" were you referring to a previous post I wrote to you? I noticed you deleted your post after I wrote that very phrase and I think you misunderstood my tone and meaning. I know your story because your story resonates with my own. I know your story because you are active on this site. And, I appreciate your story because I chose the same as you and reading your story helped me feel confident in that choice.
I'm sorry I came across the way I apparently did. Please accept my apology. And yes, keep telling your story.
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Hi Deb - thanks for sharing your path. Do you mind sharing more? It's just informative for us going through this. What stage cancer are/were you? Did it spread to the lymph nodes? What were the tamoxifen side effects your mother experienced? Did she do chemo or was it tamoxifen only? Please accept my condolences as well on what happened to your mother.
As something who just started taking tamoxifen, I am really curious about what happened to your mother, as it may impact whether I decide to stick with it or not.
Meow and Marymc - thank you both for sharing your stories, it's inspirational for those of us just entering into all of this! It's honestly so encouraging to know that breast cancer can also be beat with minimal treatment. I balance somewhere in-between but I think we all have our own risk/benefit profile and we have to make the right choices for us. I was fine with the lumpectomy and radiation, and I got through both really well (no SEs), I declined a further axillary node dissection due to the 40% risk of lymphedema, and I was fortunate that I did not need chemo due to a low oncotype score. I just started tamoxifen at half dose and will work my way up to full dose (which is something that a few people who were able to take it without many SEs did), and so far I've been fine, knock on wood that I can continue a smooth path. I'm still really, really nervous about SEs on tamoxifen, but for me since I had a couple positive nodes and did not to chemo, I can of feel like I have to give it a go.
Cat5 - wishing much fierceness to you as well!
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debm - sorry about your mother. I took Tamoxifen for 4 years. First year I was on Arimidex. Just curious what SEs from Tamoxifen did she die from? You know it really was the drug because that’s what caused the side effects so Tamoxifen doesn’t get a pass.
Diane
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Hi Deb:
No judgments from me at all!! I am so very sorry to hear about your mother! I completely support your decision! I chose no radiation and no tamoxifen. My choice. And I am so good with my decision. My oncologist is a precious man who supports my decision as well. As long as I am vigilant at having diagnostics (ultrasounds) every 6 mo. And seeing him once a year and my onco surgeon is following me once a year. So I see one of them every 6 mo. I do my monthly self checks as well (caught my cancer by chance by touch) (mammogram didn't see the cancer even after they put sticker noting where my tumor was! It did not see it. Was invisible).
I think it is so important to do what you think is best! I support you Deb. Regardless your stage or grade of tumor....ultimately hands down it is YOUR choice and that is the way it should always be! Some on this site may not agree with what I said. But this specific thread is supposed to be a place where we can talk about our choice and not be judged. So with that said hopefully nobody will judge.
Have a wonderful week!
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Hi Deb and Jons Girl,
I stopped Arimidex after almost 2 years, I could not take it any more. I did everything, worked out all the time, acpuncture, claritan…..the joint and bone pain was too much. My doctors were alright with my decision, I feel like my old self again and have a good QOL back. I had a 7mm pure mucious tumor, ER & PR strong positive, Her-2 neg, grade 1, stage 1. MY Ki-67 was 30, my Magee Equations were all in the low teens but a higher oncotype dx RS, which is not recommended for Mucinous tumor testing. I am good with my decision, eating right and working out all the time. My friend was on Tamoxifin and came down with Lupus, and had liver problems, she thinks it was from the 5 years of that medication, but we don't know. My surgery was 9/16
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I certainly am not judging I’m just curious about Tamoxifen possibly causing liver damage and Lupus. Btw I’m 7 years out last August.
Diane
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thecargirl: Wow that sounds awful! I am glad you aren't having to go through all that pain anymore! Eating right and exercising goes a long way to helping our health I believe. Maybe I am not right but that is what I believe. I too have made more changes in my diet and I do get exercise as we live on a farm. But I need to be doing more aerobic exercise and that is my goal to start doing that more regularly going forward.
Diane: I am curious about the tamoxifen causing lupus and liver issues too. Congrats for 7+ yrs cancer free! That is fantastic! I am hoping mine never returns, my odds are good that it won't. If it does I will tackle it again.
Have a great weekend everyone!
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I’m refusing
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I have comprehensive lab work every 6 months as well as ultrasounds, between my RO, MO, BS and GYN my breasts are checked every 4 months as well as my own breast checks. I finally feel like my old self, after being off of Arimidex 3 months. I do feel it did damage my joints, even though I am older I think it hastened joint deterioration. If I was a lot younger I may have chosen to stick with it or find other treatments but my QOL was really suffering. My diagnosis was better than most but it still had a few red flags, no one knows what will take us you could be run over by a car tomorrow. I struggled to figure out what was right for me but I am at peace, I get strength from my faith as well. Eating right, no alcohol, exercise, keeping my weight down, reducing stress and staying positive are my daily goals. I had my surgery on 9/16 and was on Arimidex almost 2 years.
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I refused recomended chemo as well, did only radio and tamoxifen, my MO told me chemo has 5% benefit in the best case .. I said no thanks. Suffering from tamoxifen side effects like joints pain but it’s doable.. I strongly believe chemo doesn’t cure as many women after doing everything get it back again, we need better medication, not poisoning ourselves with the hope of few percentage for it to work
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Nas, that is why I am so grateful for the Oncotype test that tells us who is more likely to benefit from chemo. It really has revolutionized treatment from even 10 years ago.0
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I feel like people are almost hostile sometimes perhaps it is because I repeat my story. Oncodx score 34 I refused chemo, no cancer for 7 years. Don't rely on oncodx it is a statistical model. If all other informations supports a benefit with chemo then consider it.
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Meow13 - I love your story and can't understand why people would be hostile. I did not do chemo, believe a lot in nutrition and exercise helping, did rads and am OK so far with tamoxifen. Knowing you are 7 years out cancer free and no chemo with an oncotype of 34 gives me inspiration that this can be beat without chemo.
Great to hear the other stories as well. Especially a lot of you who have really adopted the nutrition and exercise and thrived. Thx for sharing
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I did rely on the Oncotype score. I talked to my radiologist who is also a friend and she said I could feel comfortable basing my decision on my score which was low@11. All things being considered I’m confident it was the right choice. It allowed me to dodge chemo but do radiation instead. I had early stage IDC, Stage 1b, Grade 1.
It doesn’t matter what anyone thinks about our decisions to do or not do chemo because it’s our call and our lives after all. None of us can predict whether we will have a recurrence or not. No guarantees either way.
Btw I’m 7 years out too last August. So far, so good.
Diane
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Diane - hurrah another 7 years out! My path is more similar to yours, Oncotype provided me with the no chemo rationale and I did radiation. I’m just thankful for the oncotype because without it I would have had a lot of pressure from my family to do chemo.
Agree with you that it’s a personal choice and weighing our own risk/benefit scenario. For me it’s just great to hear from people like you and Meow who did not do chemo, are 7 years out, and cancer free because it gives me hope. I’m still in my first year of this and trying not to worry. I like to think towards cases like yours and Meows etc.
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There is a lady in this community “Lily55 “ she had stage IIIA with 7 positive nodes, refused chemo and is 7 years out now, I totally agree with Meow13, once o is good for giving us peace if mind with our decisions but is not the last call either, people stage I or II doing all the treatments get it back, people not diing chemo stage III grade 3 never get it back, this shows that doctors don't know if the chemo is working or not, lf people (good number of us), don't get it back after chemo they say chemo did its job, but they know better than all of us it's not proven, if chemo worked we all should be called cancer free after doing that, but my MO told me we can never call you free, WE DO NEED BETTER MEDICATION 🙌🏻
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Hi everyone...sorry if this is repetitive. I was diagnosed at 62. I had a BMX with no other treatment. I refused mostly due to a pre existing health issue. I already had poor QOL and wasn't willing to jeopardize it any further. I did lose 30 pounds and try to exercise daily. This had been shown to lower estrogen levels by 40 percent. Almost the same as anti hormone treatment. I have encountered a lot of hostility on this forum. I will never understand why someone would care about my personal decisions. I would never advocate it for anyone else! It reminds of how in a social setting alcohol drinkers try to get me to drink against my will. Why would they care? Anyway I'm 4 years NED. So far so good!
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dtad - ooh, I hate those people who try to force alcohol down your throat!
I took all the treatments offered and have asked for more. Chemo, BMX, rads, herceptin, AI, OS, and I'll probably do nerlynx. I'm struggling with insomnia a bit since starting the AI/OS but compared to most folks my side effects have been minor from day 1. All this treatment will only give me a chance at beating BC. I could do it all and get a recurrence anyway. Nothing is guaranteed.
I applaud everyone who has the courage to forgo conventional treatments and say so right out of the gate. I get really annoyed when folks come back here claiming their spiritual cleanse or purple koolaid diet or whatever cured their BC and they're fourteen years without a recurrence, and you check their profile and this was their first post. I'm always like "well of course you're still alive and well, if you had relapsed and died you wouldn't be making this post now would you?" It's like they didn't want to say anything until they knew it worked.
I think as long as you're realistic about the possibility of recurrence, there is nothing wrong with refusing treatments. I mean, that should be obvious, it's your life, your body, your choice. And sometimes the cure is worse than the disease. I have a coworker who had multiple myeloma and is now on immunosuppressants for maintenance therapy, presumeably for the rest of his life. He is always wondering if he should be taking it or not - the side effect is that he gets sick all the time. He's in the hospital with pneumonia right now. That is too close a call IMO. If I were him I'd either cut the dosage or quit taking it and enjoy whatever time I get.
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cargirl: I am doing alot of the same stuff as you. I started having bloodwork as well. Will be doing that every year. I didn't mention it, but my faith definately got me through this cancer journey and continues to do so. I too try to keep a positive outlook on life, that helps a lot as well.
You all are so encouraging to me! To hear your stories!!
Meow and tdad: It makes me frustrated that you both have had hostility here on this forum. That is NOT ok! In my opinion if people can't read someone's story or opinion and be ok and respect them for that opinion.....they shouldn't be on this forum. Hopefully the moderators are kicking people off the forum who aren't here to support others. If people are having hostility thrown at them then this isn't a safe place for those of us with cancer or having had cancer. Stress isn't something any of us need more of in today's world! So I am sending support and hug your way.....and letting you know how valued you both are on this forum! We value you both here!
Oncotype test: My breast surgeon has been practicing for over 30 yrs, and when she initially told me about the oncotype test she said it is very expensive and she said because of the parameters she already knew about my tumor, she said that the oncotype results would be very low. She didn't think it was needed as she could predict it would be a low number. She had done so many of those tests she knew what the outcome would be. So I never had it done. My tumor was slow growing 9% prolif rate. I thought that was interesting she didn't push that test with me.
treatment choices: I think each of us have made decisions that are right for us. Nothing is 100% as someone already stated above. If I had done treatments.....maybe it would have returned anyway, maybe not. But as stated above it surely doesn't seem that anything we do is a rubber stamp that we have done the right thing and it will never return. We just have to make the right choice for us and be completely happy with that decision.
All your stories are inspiring......thank you so much for sharing! Make sure to keep sharing your stories! Each of us have unique and important information to share with others!
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It is also a red flag that oncodx, atleast my report, only shows a resulting score, er, pr percentages and a sample size. Nothing about particulars of how my score was reached. For 4,000 dollars that is not good enough, people want to know more about their cancer. What was alarming about it why exactly would chemo be advised. I don't put faith in this company I know they are protecting their intellectual property but the results should be periodically verified by actual data. The tailorx study was the only one I have heard of and that was for intermediate scores.
I feel badly for my coworker that received an oncodx of 4, her cancer showed up in bones later on. She was completely devastated she was convinced the probability was so low she couldn't possibly have a recurrence. Don't put too much faith in the score if everything else points to doing chemo I would do it and vice versa.
I would like to see more scientific proof of treatments not just math models. There are so many variables and each one of us is different why are we all being treated the same? Standard of care, maybe we should open the door for oncologist to try other treatments first. Right now stage 4 patients are given more options.
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I completely agree Meow! Well said!
On a side note....wow I just read a bashing on this forum on another thread.This shouldn't be allowed on this forum. Not what we are here for! We are here to support one another and yes give opinion in a tactful manner but respect each other! Whatever happened to respect!?
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I think you're referring to a post of mine. It was NOT in the "alternative medicine" topics, so I mistakenly thought I was allowed to state my opinion there. 😒
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we should be able to state our opinions anywhere on this forum without bashing. Regardless of where the post is. I respect yr opinion. We don't all have to agree. But we should respect each other's opinion. And support each other on this journey. We all have had different journeys. But all have had cancer. And we are all either striving to get through dx, treatment, or heal after treatment. And we should all be here for each other supporting not bashing each other.
You may not agree. And that’s ok
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I feel badly for my coworker that received an oncodx of 4, her cancer showed up in bones later on. She was completely devastated she was convinced the probability was so low she couldn't possibly have a recurrence. Don't put too much faith in the score if everything else points to doing chemo I would do it and vice versa.
This seems like a poor understanding of statistics, and the doctors should have made sure she she knew the difference between very low risk and no risk.
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Jons girl, hi! I saw you said your doc does blood work on you...my mo won’t run tumor markers on me because he says they are unreliable and not used for stage 1... do you think I should look into this more? I don’t understand how some docs feel they should run those blood tests for some but not for others..so confusing!!
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Hi April1964: Wow that is interesting. I am lower grade than you are. All I know is my doctor has been practicing for many many years, guessing 40 yrs or more. And if he says we can run the test I would think all mo's would be able to run the tests on stage 1 pts. One thing I have learned going through breast cancer....I have had to advocate for myself. So it surely wouldn't hurt to ask your mo, and also ask him/her for the data regarding why he/she won't run the tests. I would think yr mo would be happy to share that info with you. You could also tell them that you know another stage 1 br ca pt who's mo is running blood tests yearly. I don't know what kind of treatment you had (don't mean to be nosy) but I also have ultrasounds every 6 mo which is supported by my mo. they didn't see my tumor on mammogram so I am requesting not to have those done going forward. I am assuming you are probably also doing diagnostics often but if not you could request that as well. Have a wonderful day!
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thank you Jons girl for responding... I will ask him when I see him next... I only see him once a year now. They don’t do ultrasound on me because I don’t have dense breasts. As for treatment (no worries you aren’t being nosy st all)!! I had lumpectomy and radiation and am on Arimidex. Enjoy the rest of your evening.
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