My choice--refusing treatment
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Salamadera, as an engineer I think she understood there was such a small risk but emotionally she wasn't prepared as many aren't. In her case the cancer was most likely already stage 4 when she had the test. How many on this site have thought low oncodx score equated to little to no recurrence risk? I am imagine alot of people thought statistics were on their side. Just as many collapse when a high risk number is assigned to them and run to get chemo to reduce their risk.
I ask you if you were told your chance of recurrence was 2.5%, 97.5% non recurrence would you be suprised? Seems like stating not understanding the statistic doesn't hold water.
Also note that copying a post and responding has been frowned on in BCO community in the past.
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I don't really think anyone is emotionally prepared for a recurrence, even if you've been told a high risk. Some things in life can't really be prepared for. I wasn't really 'surprised' when I got my cancer diagnosis since I've bene kind of waiting for it ever since my mother died, but that's not to say I was emotionally prepared.
Sorry about copying and pasting - on other boards I've been on that's considered helpful and respectful. I'll try to better under the BCO expectations.
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my MO said my blood doesn't show to markers and that is not unusual.
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april1964...My doc at a major NYC teaching hospital told me tumor markers for stage 1 are completely unreliable.
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april1964: you're welcome 🌺 can you please share with us what yr dr says and data shared? I'm glad you asked this question!
To give a bit more info regarding my doctor: My medical oncologist works at a west coast highly respected teaching hospital. He is clinical medical director of the cancer institute connected to that teaching hospital. He is also asst professor of the school of medicine at the teaching hospital. Specializing in Breast Cancer and Hematology oncology in his medical practice
I say all this about my doctor because I believe he wouldn't say we could do the testing if it was pointless?? Hes been practicing since the 1970s. I will try to remember to ask him about this when I see him next time too. Maybe he told me it’s not reliable and I didn’t hear that? Not sure, but I will ask.
In any case I'd really appreciate you sharing any results with us here.
Meow: I've seen copying and pasting on other forums. I wonder why they think it shouldn't be done here? It is helpful a lot of times. And sometimes clarified what the person is trying to say. So that's interesting.
Salamandra: I agree. Emotionally I sure wasn't prepared for a cancer dx. I was pretty shocked. I'm a pretty healthy person or so I thought. 🤷
Hope you all have a wonderful day!🌹
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Meow, a few posts back, you said stage 4 have more options. Would you explain that? I am asking just for more information, with respect and friendliness.
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I agree with jons_girl about advocating for yourself. I think I wouldn't have gotten the oncotype test if I didn't advocate for it. Basically because there were a couple positive lymph nodes my surgeon who had mentioned the oncotype before said well now the positive nodes meant they would just do chemo. I ended up finding a thread on this site of other women who had positive nodes and similar stage to me who did or didn't do chemo based on their oncotype score. And I also found some published studies indicating the use of oncotype for early stage, 1-3 positive nodes. So then the surgeon said she'd ask the oncologist and then the oncologist agreed that in my case the oncotype made sense, then they ordered it, then I came back with a score that said I'd have the exact same risk of recurrence with or without chemo. So finally I was able to have a plan of action that did not include chemo.
I wonder if sometimes they just bias towards the most aggressive treatment and we have to understand the side effects and make our own risk/benefit decision. For me the cloud lifted when I got my oncotype score and everyone aligned on a path without chemo.
April - I think if you want certain tests done to help decide your course of action you should insist on it. I had to insist on the oncotype and once we had it, it changed everything (for the better!).
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Meow, I understand you didn't get chemo and I'm truly glad for you that your decision worked for you. I fully support yours and other people's right to make that choice. But it's a little insulting to say that many women "collapse" when they get a high oncotype score and "run to get chemo." I did NOT collapse (whatever that means) nor did I run to get chemo out of blind fear. I got a second opinion with an oncologist who walked me through how the molecular analysis is done for the oncotype and what the variables meant in my situation. I consulted also with my breast surgeon, whose opinion I value, and I did a hell of a lot of research on the stats on outcomes with and without chemo in my particular case. Armed with all that information and in a decidedly non-collapsed state, I chose to move forward with chemo. It's important to be as respectful of the choice to do chemo (or radiation) as you want others to be of your choice not to.
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I did collapse and I did run to chemo
. Either state is completely acceptable. And in reviewing this thread (it's interesting to me and I do admire the strength you all have in evaluating and determining your treatment plan), I see very few - if any - people with stage 3 cancer. At stage 3, it's almost guaranteed that th cancer will progress without treatment. So, in a sense, there is a bit more “luxury" to debate and eschew chemo. At stage 1, the added benefit of chemo is marginal. So it's slightly easier to “walk away". Please know that I put the word luxury in quotes because there is no luxury when it comes to any breast cancer diagnosis. However, sometimes I get a bit anguished when I hear people refer to chemo as poison or almost ineffective. For some of us, there's little option. No doubt chemo is toxic, but so is cancer in my lymph nodes . Best wishes to you all and bravo for charting your own course and for doing it in whatever manner worked for you or whatever manner reflected your personality and way of coping.
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My cousin is a stage IIIc TNBC survivor with 14 positive nodes, she is 6 years out and NED, she did all the treatments although doctors gave her %25 chance to make it to five years, but she is still around and healthy , I asked her secret and she told me after finishing radio and chemo, my MO told me that I had 7 years high risk for my cancer to come back , I felt so sad and helpless, I decided to change my MO, she is a very positive MO and she told me you have the same chance to get your cancer back as all the people walking in the street, at that moment I didn’t feel sick at all, its 6 years now and I still feel healthy but ready to get my bc back or any type of primary cancer as anyone else out there. I believe we all need to think in that way, we HAD cancer, we removed it and did all the necessary treatments, NOW we are as healthy as people around us, BUT have the same risk as anyone else to face it again.
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Gosh I wish I was confident enough of my choices to dare to recommend them to others. I hope every day my decisions continue to work for me. I would hate to have to accept any responsibility for others making decisions because of my experience. I do share my experience because it is unique and may help someone in a similar position. But I am an experiment unto myself and the outcome has not yet been determined.
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That's how I'm choosing to look at it.
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Yeah, the phrasing of 'collapse and run to get chemo' was off-putting for me too.
I think it's really important to show respect for each other all the different ways we respond.
And, to get pedantic - you can't collapse and run at the same time! Having some time of collapse in response to shocking news like a breast cancer diagnosis is completely fine and appropriate! There's nothing wrong with collapsing. But by definition, once a person has made it to chemo, they're not collapsed any more, they're up and moving and and pursuing a course of treatment in consultation with a team of doctors and being proactive about taking care of themselves. (Not to say that chemo is the only way to be proactive, I mean that it is also a way to be proactive, no less so than lifestyle changes or diet or even a reflective decision to keep things exactly the same).
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Posey - You're right that in many (possibly the overwhelming majority) of stage 1 breast cancers, chemo offers only a minimal improvement. But not all. In my case, just as an example, the oncotype showed a 26% risk of recurrence without chemo. However, the oncotype also showed that on a molecular level, my cancer was triple negative, making the 26% invalid. The oncologist said I had a very aggressive cancer, even though it was early stage, and was looking at a recurrence risk in the 35-45% range. Making the decision to do chemo a little less than luxurious for me. I did what I felt was the only sane option in my particular case. For others, of course, that wouldn't be true.
Salamandra - I agree about the broad definition of being proactive. I've seen such an amazing array of ways women approach this in an honest effort to deal with a terrible disease and take their health into their own hands as much as possible. I think the key is to do your research, make your decisions, and then be at peace with that. None of us can really know what the "right" treatment path is, whether we die tomorrow or live to be 100. Let's face it - luck plays a role here.
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Wanderweg - I have to agree with you. Our situations are almost similar with the exception I had a MammaPrint which came back high risk, Luminal B. My average 10 year risk was 29% and I knew I couldn't avoid chemo. I also didn't want to take the risk of looking over my shoulder or wondering if I made the right decision.
Trying to make these decisions is difficult and we do the best with the information out there. Its hard. My husband is a cancer survivor and he took his approach differently then mine. He was okay what do I need to do and lets do it. No research, no second guessing, nothing. Each to their own with the decisions made.
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TB90 - well said. We are all an experiment with a cohort of 1.
Salamandra - no need to apologize for being pedantic! Not to me at least!
Also note that a lot of Her2+ cancers are considered stage 1 cancers now days with or without lymph node involvement. But skipping chemo is almost unheard of for Her2+. It's a very aggressive cancer that has a good prognosis with modern treatment, and modern treatment includes chemo most of the time.
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PoseyGirl, you said it right: for stage III girls the choice is not between having treatment vs not having treatment but rather between dying within 2-3 years from mets or having treatment with decent odds of long term survival.
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Happy to find this thread as I am planning on refusing Tamoxifen when I meet with my MO in March and could use a safe space to discuss.
I found my stage 1 IDC @ age 36 and had a lumpectomy and 4 weeks of radiation. I had clear surgical margins and lymph nodes and no family cancer history or BRCA 1/2. None of the doctors even thought the oncotype test would be useful (although I was curious), so that was not done. They asked if I would have been open to chemo, which I wasn't, which seemed to reinforce their decision to not run the test.
For my specific scenario, it seems like the chance of recurrence is lower than the likelihood of the tamoxifen side effects. This is a big driver of my decision.
My tumor was highly ER/PR+ (in the 80s for both), so it seems like reducing estrogen/progesterone is key, which I know Tamoxifen does. I stopped taking birth control pills when I had the lumpectomy, so that should help reduce both of those levels in my system...I think. I was on the pill for nearly 20 years, so now my hormones are naturally fluctuating all over the place and I don't know how that's all going to even out. Is menopause (either chemically or surgically-induced) the only method of treating ER/PR+ breast cancer at this point? I met with the MO after surgery and she made it seem like Tamoxifen would be a slam dunk for me, but knew I was apprehensive and told me I didn't need to worry about taking it until we met again in March. As such, options were not discussed. I'm going through the links in this thread and reading up on your stories and wanted to introduce myself to the group.
You all are pretty brave taking on cancer the way you do. We all do it in our own way for our own reasons, but everyone's decision came with a lot of turmoil and tears and ultimately changed their life. Kudos to you for making yours-whatever that may be!
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Excellent point, Wanderweg. There are many subtypes of bc, and some are aggressive no matter the stage. I think that low grade, hormone positive cancers that are stage 1 are the ones that generally speaking receive the least benefit from chemo. It is these cancers that I refer to when I can appreciate accepting chemo as more of a tough or agonizing decision.
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Welcome JB1165: You didn't mention what grade your cancer was....not sure if you wanted to share that. I had similar situation to yours it appears. My tumor was less than cm. Stage 1A , 0/2 nodes. I was grade 1. I am in my early 50's. And I did not want to be thrown into menopause (I am almost through it I think). I wanted to get through it and then see what my levels do regarding hormones. I too had high Estrogen/Prog positive tumor...something like 97-98%.
My MO was supportive of my decision to not take Tamoxifen. (chose not to do radiation either) But he told me I must follow up with him. So at my request... I am seeing him and one of my surgeon's associates every 6 mo. Switching off seeing one and the other. I also have every 6 mo a ultrasound as a diagnostic (I have extremely dense tissue).
I am not saying what I did you should do. I am just sharing what I did. I am almost 2 yrs post surgery. So far so good. I don't have 10 yrs or 15 yrs under my belt yet cancer free. But thought I would share my experience.
Something else I have done, I have changed my diet even more than before cancer and regular exercise will be part of my regime soon too. We have a farm and so I do get weight bearing exercise on a daily basis usually. However, I need to be doing regular aerobic exercise I think. So need to kick myself in the pants and start doing this daily. So will see how everything goes but wanted to share!
Welcome to the forum and I hope all continues to go well for you in your recovery! Have a great week!
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PoseyGirl: Yes you reminded me of something I just read today......someone got mets who had grade 1! I had to read that more than once! I thought, WHAT!?? I didn't even know that was possible! I thought low grade means very slow growing so I equate that with no mets or very very low mets probability.
Have you heard of this happening?
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hi Jons_girl, unfortunately, in a small number of cases, stage 1 can turn to stage 4. I've seen some DCIS do the same (hugely rare). The thing is, that once cancer breaks out of the duct, it is invasive. So if a few cancer cells escaped, resisted treatment, and were able to find a spot to metastasize to, then after time, yes, they too can grow into a new tumour. In most cases, the cancer remains in the breast area and is completely eradicated for most stage 1’ers. But not always. They can’t know if tumour have shed cells into the blood, and can’t know how well your body has responded to chemo (if you had it). I believe long term recurrence for stage 1’s hovers around 10 percent, longterm for stage 2 (beyond 10 years) is likely 25 percent, and stage 3 likely 40-50 percent. Don’t quote me on these figures; l am just extrapolating from the studies that usually stop at 10 years.
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Jons girl,
My bc was, and still is grade 1 and I have bone mets. They were discovered by accident. Not usual but it does happen.
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poseygirl:thanks for the info on stage 1 recurring cancer! It’s interesting to me cause mo and surgeon are both telling me it probably won’t ever return That’s my hope. Cancer is so unpredictable.
Exbrnxgrl: thank you for sharing a bit of yr story. grade 1 and bone Mets. Grade 1 is supposed to be so slow growing!? Im glad you shared about this! Can you share how hey found it by accident? (If you want to share) i have been having hip/abdominal pain. Have had ultrasound and mri all seems ok. Pain still there. Thank you again for sharing. 🌺
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Jons girl, it’s a long story but in a nutshell, it was found on an unrelated PET scan. I have never had any symptoms.
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JB1165, Just to throw a little something into the Tamoxifen discussion: I was 10 years out from a thorough hysterectomy due to hormone-driven endometrial cancer. No ovaries, no hormone replacement therapy. Yet here I am with an ER of 99% last year when I had breast cancer. Some people keep cranking out estrogen no matter what. I had taken birth control pills for ONE YEAR ONLY, in 1970. Also, just got my genetics information back, and no BRCA. It's really, really unpredictable how much estrogen your body can produce. I hope someday there is an accurate way to assess these risks.
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Jonsgirl - I had and still have hip pain but mine is from osteoporosis. It’s natural to think it’s a sign of bone Mets because whether we can help it or not once you are DX every ache and pain is troublesome. I bruised my breast one time and it was all red and I was scared it was BC all over again. I panicked but waited a few days and it cleared up only because my husband said it looked like it was just bruised.
Stats are just that stats but for me with early stage BC, low Oncotype score and 7 years out it’s the only positive thing I can hold onto. No guarantees of course but still encouraging.
I always thought there was pain with bone Mets but obviously that isn’t always true. I had severe pain in my hip with osteoporosis but as since leveled off. My MO told me at the outset that if I had pain for more than 2 weeks to call her ASAP and not go to my GP. Fortunately I didn’t have to call her.
I wish there were hard and fast rules about BC but sadly there are not. It’s not a one size, fits all disease. My sister had ILC and her’s came back locally after 4 years. Initially she did not have rads or chemo but when this happened she had 33 radiation treatments. She had to have 2 shots every month because they recommended chemo but she’s allergic to the drugs.
BC has come a long way in research and treatment since I was DX in 2011 but still have a long way to go.
Diane
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JB - Just so you know for decision purposes, estrogen isn't only created in the ovaries. Estrogen is also produced by the adrenal glands, fat cells and even the hypothalamus in the brain. So stopping birth control pills isn't enough to prevent the estrogen in your body from feeding ER+ cancer, and even removing ovaries isn't enough. I'm not saying you should do endocrine therapy - that's your choice, of course - just wanted you to have that additional information.
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Hi PoseyGirl: Thanks for that info. Yes I think my recurrence rate was around 10% even without rad and tamoxifen. Rate wasn't high. If it returns I will hit it again. But trying my best to stay healthy and will see how it all goes.
Hi Exbrnxgrl: Thanks for sharing. Sorry for asking questions.
I had always thought bone mets would be painful. So it is good to know that isn't always the case. It is good they caught it on PET scan. Speaking of PET scans.....have all of you had a PET scan? Are they only ordered when someone has pain or what is the reason they order a PET scan and is a PET scan better in seeing things vs MRI? I realize they are different types of scans...just wondered if someone could explain this for someone who knows very little about them. Thank you in advance for explaining a little about PET scans.
AliceB: I totally agree! I hope they can figure out someday how to assess the risks of highly est positive tumors.... I was super high too...like 97-98% in both Est and Prog in my tumor. My breast surgeon told me that is the best kind of tumor to have cause it is treatable. But being estrogen dominant isn't fun, I am hoping that menopause will at least calm down my levels, who knows tho. I guess I had always thought take out the ovaries and no estrogen dominance. Thanks for sharing. My surgeon told me that there is SO much about breast cancer they are still learning, so much they are having to unlearn and so much they have yet to learn. I know they are trying to learn how to cure cancer.....just isn't happening fast enough for me. My gma died of it in 99. =(
Edwards 750(Diane): Thank you for sharing! Wow that is so cool you are 7 yrs cancer free. Huge blessing. Yes you are right, stats are stats. I look at it that way too....just because I know stats aren't always right. Not to say the professionals doing those tests aren't right....just saying sometimes the stats aren't right for some people. I am so sorry to hear about your sisters experience. Wow. I wish there were hard and fast rules about BC too....I know there aren't. I have had this hip/abdomen pain for a while now. My MO knows about it and I am going to see my gyn too. It may be nothing. But my MO told me to tell him anytime I had pain I think....so I have. But nothing has showed up on diagnostics. Which is good. So I am assuming it is just cause I am early 50's now.
Yes you are right BC research has a ways to go yet. But I am thankful for what research they have done thus far...Happy Valentines Day everyone! Thankful for this forum!
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I’d had ct and bobe scan just once before my surgery, after radio one tumor marker and now only blood work to check my estrogen level, no more scan
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