My choice--refusing treatment
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QUOTE - ""If your MO has prescribed Tamoxifen, then I'm sure it was 20mg., not 10mg, and I'm also sure that he would not agree with stopping it." Lots of assumptions made in this statement. Speaking for my two MOs (my first retired), I know that neither would push Tamoxifen or an AI on a patient who gets little risk reduction benefit, and both would be very receptive if a low risk patient stated that she wanted off the meds because of QOL side effects."
I have refused Tamoxifen, and am now refusing the AI's. I did have chemo the first time around and regret it. My experience has been that when you tell a medical oncologist you're refusing their drugs you're treated quite badly. I was told 11 years ago, when I said that one of the reasons I was refusing Tamoxifen was the risk of deadly uterine or ovarian cancer, "we'll just take them out if that happens" - and he did'nt miss a beat saying it either. As though cancer coming up in my uterus and having my uterus removed was of no consquence to me whatsoever, not to mention telling me that what "they" would do to my body! They do not respect your right to refuse their poisonous drugs and I'd like a buck for each time I read a woman talking how tamoxifen had ruined her quality of life (I feel like I'm 90 years old, every bone in my body aches, being one stand out comment) also saying that "my oncologist won't let me stop". It's not just that I can't believe these women don't take control and do what is best for them, but also that regardless of how unhappy they are, the oncologist doesnt care.
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My SIL was one of the unfortunate ones who developed uterine cancer while taking tamoxifen for stage 1 breast cancer. She told her doctor she could feel something. He didn't react very quickly. Cancer had spread throughout her abdomen and lymph nodes. It was absolutely horrible she had the worst chemo experience trying to save her life. Her suffering during that last year would make any of the strongest of us sick.
We need much better treatment that works.
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Meow13. That is terrible, my deepest sympathy to you. Your story is what I'm talking about. I agree, I was told Chemotherapy would give me a 3-4% benefit. I realise now, especially after having a recurrence, that that isn't a good enough potential benefit compared to what I went through, and the long term health effects. I do not believe it is acceptable that women are being told to take a proven carcinogenic drug that is proven to usually ruin quality of life for 3% benefit (that's what I was told it would be for me). Not good enough.
Like I've already mentioned it's also unacceptable that medical oncologists think it's ok to be rude and bully women who refuse. It's not okay to tell women “they can't stop" taking the medications despite their suffering.
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I agree doctors with their never ending quest to always be right, go apoplectic when you refuse to take the meds or do the treatments they prescribe. I’m sure with some of their inflated egos they are at a loss how to react so they choose to be belittling and threatening. Smooth. Not.
It’s not their body or their lives. They can and should advise but it’s not their call to insist. They just don’t seem to get that. I have a friend who stopped all drugs after she had a reaction - severe- to each one of them. She’s a nurse at St. Jude so it’s not like she isn’t familiar with cancer, etc. BTW she’s 12 years out.
We know and assume the risks of NOT taking the drugs and the havoc that they create if we do. I was fortunate not to have unmanageable side effects from Tamoxifen.
Do what you think is best for you because after all it is all about you.
Diane
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I too agree that some doctors are rude bullies who respond negatively to patients who do not follow their advice.
That said, from reading this board, I've also seen many situations where patients are frustrated because their doctors are not advising them of what to do, but are putting the decisions onto them.
We all have different personal experiences with our doctors. Those experiences are all relevant - to each of us as individuals - but do not reflect the experiences of anyone else.
Some doctors work well with others; some do not. Some doctors are too involved and forceful about the treatment decisions; others are not involved enough. Some patients and doctors have great relationships; others do not.
I understand and am sorry that some of you had to deal with doctors who were bullies and who did not respect your opinions and your right to make your own decisions. My experience has been different. My doctors have answered every one of my questions, have provided any information I have requested, and while offering up recommendations for my treatment, have in all cases left the final decision to me and have respected my decisions, both in cases where I have agreed with their recommendations and in cases where I have chosen to do something different. I have friends on this site who have had the same experience that I've had.
Everyone's experience is valid. And that's why assumptions and generations are a problem. Assumptions and generalizations, such as those made in some of the posts in this thread, invalidate anyone's experience that is not the same as what is assumed or generalized. rubyredslippers, that is the point that I was making in my statement that you quoted above. I was not questioning or invalidating anyone else's experience, but I showed how my personal experience was different from a generalization that had been made earlier in this thread. Based on the restatement of some of these same generalizations, I guess I should conclude that my experience, because it's different that what is accepted here, isn't valid.
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I had a real concern that if I didn't go on tamoxifen that my MO would wash his hands of me and all follow up treatment. Here's what happened: when I mentioned to my RO that I wasn't sure I'd be taking tamoxifen, she said if you don't, please continue to see me so you have continued care. When I shared the same fear last week in my first counseling appointment arranged through the care team, the psychologist told me that my MO would NOT wash his hands of me, that he'd still be my MO (unless I decided otherwise).
In this case, I realized that if I hadn't spoken up about my fear I might have made decisions because of false assumptions I was making.
Also wrenn, is that your kitty in your side picture? Adorable!
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I want to pet his belly but I know that's probably off limits.
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Wrenn, I have an Oncologist because I have breast cancer. Not because I plan to go along with all their recommended treatments. Someone has to order the testing (mammogram, ultrasound, MRI, etc.) Someone has to be able to compare the current results with results from the past, giving an opinion if things are improving or getting worse. Their job isn't to try and force their ways upon us, but many of them do by guilting or causing fear. Who told your friend that if she didn't take Chemo, she wouldn't be around for her daughter? I'm just asking because you said that her treatment was hell, but she wanted to be around for her daughter.
My Family Dr. said it to me and so did my Oncologist. “I don't want you to die!" Did they think that I do want to die? Why is it that someone has to almost die from Chemo before their Oncologist agrees with them that they should stop their Chemo treatment? Has anyone here had an Oncologist say, “You don't want to take Radiation/Chemo/Anti-hormone drugs? Oh, ok, no problem! I'll support you either way!" No one has heard that. Oncology is from the Greek word meaning tumor or mass. That's why we have an Oncologist. Because we are dealing with a tumor/mass. Not because we will do whatever they tell us to do. No one should be pushed, scarred, or forced into treatment when they say that they want to try Alternative Medicine. I understand that they feel the need to strongly encourage, but that can be done in a nice, non threatening way. Any resistance shouldn't bring out a “My way or the highway" attitude, leaving the woman to feel stupid for even thinking of a natural option.
I'd love to hear of some exceptions, but only where you didn't do what your Oncologist recommended, and how he still supported you whole heartedly and didn't make you feel you were basically crazy for even thinking of going Alternative.
I'm glad there is a thread where the Alternative Medicine thinkers can share their stories and opinions.
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"Has anyone here had an Oncologist say, "You don't want to take anti-hormone drugs? Oh, ok, no problem. I'll support you either way!" No one has heard that."
I have heard that. That's the point of my posts. You cannot generalize your experience to everyone else. Read this board - the other forums, not this one. You will find lots of other people here who have had their Oncologists say this either about rads or chemo or endocrine therapy.
I'm sorry you've had to deal with an unsupportive Oncologist. Many of us have not had that same experience.
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Shoot, read this board too. I said exactly that upthread. My sense now after last week's appointment with my MO is that if I do say no thanks to tamoxifen, he will be fine with that.
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I think perhaps sometimes people who get a cancer dx don't realize they don't HAVE to choose the medical or radiation oncologist that they were referred to by their surgeon or whomever did the referral. Perhaps also some people live in a area where there aren't alot of choices for these types of doctors.
I did decide not to have radiation but in case I decided to do it or my cancer returned I did want to make sure I had a doctor I trusted and who wasn't a jerk. (Yep there are a few of those out there) There are some docs who aren't the kind of doctor I'd want to go see.
So I went to the referred radiation oncologist to see if I liked her and see what her plan for me would be. I did not like her at all! So then I think I asked for more names from my surgeons office. I chose to go to one of those doctors to see what his plan would be for me regarding radiation. I really liked him. He was kind and I could tell he really cared about his patients. What a difference that makes, at least to me it does! So if cancer were to ever come back I would have a plan of who to go see for radiation.
I also chose not to take Tamoxifen. My surgeon wanted me to be followed with a medical oncologist even if I wasn't going to take Tamoxifen. I went to the referred Medical Oncologist. He was a kind man who has been in practice over 30 yrs. I think our appointment lasted a hour...maybe longer. He wasn't rushed. Obviously cared about me. He listened to all my concerns and answered my questions. I told him something like: I didn't think there were many studies on women like myself with my grade and stage of IDC regarding tamoxifen really being a huge benefit. He couldn't really refute what I had stated. He said no not alot of studies have been done on stage 1 patients regarding some of the questions I had. I told him I did not want to go on Tamoxifen or have any radiation (my tumor was close to my heart) and he stated he would support my decision as long as I continued to be followed by him. I agreed. I did go see him the first 1.5 yrs. approx.
I have decided to be followed by fewer doctors at this point. But still being followed every 6 mo. I am following up each 6 mo with a ultrasound and blood work once a year with another doctor in my breast surgeons practice who is happy to follow me. My surgeon is too busy to follow me(she is very popular). This doctor will be ordering blood tests and diagnostics and doing my manual breast exams. She is also a DO so more leaning towards less traditional medicine which I really like. She is a great doctor as well. She did my genetic testing counseling prior to surgery.
That is my experience. I am sure not all MO's are kind as stated above with others experiences. But honestly if I had a doctor like that I would 'can' him and move on. I would just continue to go visit MO's until I found one I really liked. They are out there! You just have to search. I realize not everyone lives in a metro area where they have lots of doctors to choose from. Just a suggestion.
Never stop looking until you find the right doctor if you live in a area where you can choose....
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Ladies, like I said above:
“I'd love to hear of some exceptions, but only where you didn't do what your Oncologist recommended, and how he still supported you whole heartedly ...."
I appreciate you sharing with me that there are exceptions! I'm glad you have heard of that. I guess I just couldn't imagine it. Sorry if I offended you.
Lori
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Every doctor that I saw during active treatment for my stage 3 cancer diagnosis treated me as part of this large team dedicated to keeping me from progressing to stage 4. My first encounter with this team was a surgeon who confirmed that I had breast cancer (biopsy following a diagnostic mammogram). He presented multiple surgical options. He spent at least an hour with my husband and I, presenting different surgical options and the pros and cons of each. I asked him what he would recommend if his wife was in my situation. I went with that option - double mastectomy with immediate DIEP reconstruction. Since I chose surgery, my next visit was with a plastic surgeon. He also spent time explaining my options. He answered all questions thoroughly and let me make all of the decisions. After surgery I met with a medical oncologist who again presented all of my options based on my pathology. She shared her educated opinion and experience, but reassured me that it was ultimately up to me. I chose the most aggressive option and suffered very little during chemo. In fact, i worked full-time throughout chemo. A radiation oncologist was next. He spent over an hour explaining the science and research behind his suggestions. My husband grilled him and he easily answered all questions. He was very interested in our opinions and concerns. I sailed through radiation with no issue. I worked full-time during radiation. Both of my surgeons and my RO followed me for a year. My MO continues to see me on a yearly basis since I'm on an AI. The first AI was giving me some difficulty. She immediately took me off that AI and suggested a different one, which is being tolerated with no SEs. Once i complete the 10 years on the AI I will no longer see my MO unless something pops up. My GP and GYN are happy to continue my after-care. At no point during this time did I feel that any treatment was being forced on me or that I wasn't being heard. I don't regret any decision that I made and I truly believe that each of my 'team members' were on my side, just trying to keep me alive with a good quality of life. I'm sorry that some of you were not as fortunate. I can't imagine being treated by someone who wasn't working with my best interest in mind.
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Hi wrenn, I had an Oncologist in Peterborough and then she sent me to one in Toronto that deals only with breast cancer. The reason that I am remaining with the one in Toronto is so that she can follow all of my tests and let me know if my situation is improving or getting worse. If a new lump shows up, she may suggest a biopsy. If it consistently gets worse, then I will seriously consider a mastectomy, and she will guide me towards that process. My Family Dr. doesn’t specialize in breast cancer. Last month I called the one in Toronto and requested repeat tests. I had them done within 3 weeks. (mammogram, ultrasound, and MRI). All of the results were all very good, thank God!!
Janetanned, I’m glad your experience has gone so well! I know that if stories like yours were more common, I would not have been so afraid to go the Conventional way. I know there’s good and bad stories on both sides of the fence. That’s what makes it so hard to decide what to do. We all aim for “no regrets”!! That’s one thing we all have in common:))
Lori
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Lori you didn’t offend me. Not sure who you were referring to. But I wasn’t offended.
My oncologist recommended I think tamoxifen and radiation. But I chose not to do that. As I think I stated above he did support my decision as long as I followed up regularly with diagnostics etc.
There are good oncologists out there who care about their pts. But as in all professions also those who don’t seem to care. So as I stated above I think people just have to interview drs. It took years to get cancer. People normally have time to interview/go to appt...choosing the right person for them.
Just thoughts.
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Precious dog Janetanned.
Diane
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Wow, I’ve been off this board awhile and this is an interesting discussion. I’ve refused all conventional care and it’s been almost six years. I still have the tumor and it has increased in size but so far as I can tell my stage III has not progressed to stage IV. Sometimes I think that maybe I should go have the surgery but something within always stops me and I can’t say why that is. I’m not afraid I don’t think, at least no more than anybody here would be.
A friend who did holistic tx for breast cancer for ten years died last month and I was sad of course but I’m happy for her that she had the full power of choice and had ten good years and lived to almost 70 with this. I knew from talking to her extensively that she had no regrets. For anyone who might be wondering, her choice to do holistic had nothing to do with my choosing it since I had already decided what I wanted to do and a mutual friend put us in touch after I made my decision.
Some would say, and they have said, that holistic tx is no tx at all and maybe they’re right but that doesn’t explain why my grade 2 tumor hasn’t killed me yet. I often wonder about it myself but the dx has caused me to look within and face up to my emotional, physical, and spiritual issues, which has greatly improved the quality of my life and so I can only see my experience with gratitude for the lessons I’ve learned. My sister also has cancer, and she Is also choosing to not treat, at least nothing beyond surgery. And the funny thing is that we have rarely spoken to each other during our adult lives but now we at least text every day. She is still a hot mess but we both know that it’s very important for us to work on our issues together and I guess that’s part of the tx too. We look on this as a soul journey. That, and neither one of us is particularly intent on living to the ripe old age of 92.
And, I may as well put this out there....I had an odd dream the other night. I dreamed that God came to me and put these words in my head....”child, I’m going to start bringing you home. Are you ready for this?” And I said “yes I think so.” And He said, “Don’t worry about anything; I’ll take care of everything.” And that was it. I didn’t see him or anything at all except maybe a cloud. Maybe it was just a dream and that’s quite possible because I’d just been reading an article about near death experiences. I’m just going to keep doing what I’m doing because my life is so enjoyable right now and I’d rather go out in joy rather than fear and sadness. I’m in Chile right now helping my daughter with my new grand baby and when I get back to the states I plan to head back out in my van.
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Pipers dream, Nice to see you post! When I first joined here I would follow your posts. So glad you are happy.
Just want to say that I would never judge anyone who refuses conventional treatment. What I do mind though is obnoxious promotion, and I think we all know who that poster is. Too bad there's not an ignore poster feature here. Last time I will comment about that.
Interesting discussion going on earlier regarding family histories and possible contributing factors to be so lucky to catch this disease. My sister was diagnosed at age 50, and I at 56. We are both hormone positive. Only prior family history is a maternal Aunt diagnosed at age 70. She was a stage 1 I believe, had LX only and is currently fine and over 80yo. My sister is metastatic and is NED for 5 yrs. now! Me? I'm over 1.5 yrs. and at times markedly miserable. I am blaming the drug. I am choosing to work through it for a little longer--hence, why I'm reading this forum. They used to put hormones in animal feed. My family were mushroom farmers and we spent our childhood summers on the farm where there were natural springs, one of which housed a concrete pool that the family built. We used straight chlorine and skimmers to keep it clean. (No electric filter). I could try and go back and research their farming methods to find out what other chemicals we were exposed to-- even though we were outdoors and not in the growing houses for long periods of time. My grandfather, father, or uncles did not die of any type of cancer. As far as life styles, sister didn't smoke for very long, drinks lightly, while I was a 40 yr. smoker and drank way more the she. We pretty much cancel each other out on that one.
I believe both methods or a combination thereof are possible to bring us to lifelong remission. It seems the jury is still out (on both) and we still have a ways to go to find our individual tick marks, get the remedies proven, so conventional can come up with some easier treatments.
Peace all.
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pipers_dream - I'm really glad you posted here. I feel like you should be the poster child for refusing conventional treatment. You have an excellent attitude about it. I think there's nothing wrong with refusing conventional treatment but you have to understand that you are probably foregoing a cure, and there is so little data out there about women who do no treatment that nobody knows what the future holds for you. If you're okay with that, great. Treatment is a crap shoot anyway, you can do it all and your cancer will still metastasize anyway, or you can do nothing and live out a normal lifespan. I think if it was 100% definite that chemo, surgery, and radiation would cure you, people wouldn't be so reluctant to do conventional treatments, but the reality is that they just improve your odds of getting a cure, and you won't know if it worked or not until you're dead.
I also think surgery is conventional treatment. I wish people would stop presenting themselves as having refused conventional treatment when they got the most conventional one of all.
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thank you ctmbsikia and hapa!
No we don’t know for certain what the future holds and there are no guarantees in life and fortunately for me I’m comfortable with uncertainty but I know that most folks are not. Going through the conventional steps is a way that people use to gain more confidence in the future but unfortunately cancer is a wily devil and won’t always cooperate. And sometimes you start thru the steps and realize that you can’t live with that particular step and you jump off the train or at least skip that step. Who is to say what’s right or wrong. I’m willing to bet that there are many, because I know of at least two in my family, who waited to go to the doc in the first place and I’m assuming that it’s because either they were horrified by the idea of cancer tx or they were not all that invested in living. Also, I think there are people who choose tx only because they will worry that their family will think they didn’t try hard enough. This was also my greatest fear when I went into this and I’ve had the opportunity to have numerous conversations with my two daughters, who seem to mostly understand, and it helps that I’ve made it out to past five years. I have a friend whose brother died last year of cancer and there were eight sibs and I asked her what the family would’ve done if he’d chosen holistic and she said they would not have let him even think of it and probably would’ve staged an intervention.
As for labeling conventional and holistic, I always thought of surgery as conventional since it can’t be done at home, but come to think of it, some of my holistic tx couldn’t either. Medical care is medical care and there should be no shame or stigma attached to any of it but it’s nice to let people know that they have a wider variety of choices than they are generally aware of.
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Hi Monetswaterlillies,
I feel exactly like you. I am 52 yrs old and was diagnosed wigh BS having had my surgery on the 18th July this year.On the 6th August my consultant informed that I had to take 20mg of tamoxifen daily.I asked why but was basically told 'I must take it or have the cancer recur'.
I was given very little data of this reoccurrence and left feeling 'it was pointless speaking to the consultant'.
Personally I don't want to take tamoxifen or have radiotherapy until I can get more grounded evidence and even then to be honest all of the suggested cures are poisonous to our bodies and fill us with so much rubbish with horrendous side effects.
Plus even taking all the drugs prescribed cannot guarantee that cancer does not appear elsewhere in your body.So either give in to and play Russian roulette with your life by taking prescribed poisons or choose drug-free existence and see what happens!I feel the latter is me.
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I did try to find information on how beneficial tamoxifen would be for me, but the best I could ever find was that it would lower my chance of recurrence by about 50% - enough for me to try to make it work.
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annoyedwoman:
You didn’t share yr dx as far as stage or grade of yr Br ca. Maybe you didn’t want to share. And that’s ok. That’s the info that helped me make my decision. My cancer was not very aggressive at grade 1. Very slow growing. Tamoxifen didn’t reduce my recurrence chances much. My recurrence chances were very low to begin with. I was stage 1a. But everyone has to make the right choice for them. My choice may not be right for the next person. I am just sharing how I made my choice. I also chose no radiation. My medical oncologist supported my decision. I have diagnostics every 6 mo going forward. Just sharing. We are all here for you. Blessings on your journey going forward.
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You guys who refused radiation and Tamoxifen are so brave. I didn’t hesitate to follow my doctors advice to the letter. Frankly I was afraid not to. My whole BC process was on automatic pilot from start to finish.
I have been fortunate because I’m 8 years out this month. I had IDC, stage 1b, Grade 1. I had 33 radiation treatments and took Tamoxifen for 5 years. Also blessed no unmanageable side effects.
I did have a good medical team. My BS, MO and RO were all compassionate and caring. Actually their medical staff was more so.
There are zillions of doctors out there so had I not had a connection with my doctors I definitely would have found another.
Diane
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I had my surgery on July 19th and is now over 3 weeks, feeling good and doing better than my doctors expected. I had a left mastectomy and flap reconstruction. I took Bio-identical HRT for 5 years at diagnosis, was planning to go off the week of diagnosis strange how things happen. No plan for radiation or chemo but my doctor did talk about Aromatase Inhibitors. I have done a lot of research and have decided not to take any AI's partly because I think that stopping the HRT and making healthy changes to my environment will not feed any future cancer and span the gap that an AI would decrease for a recurrence. I meet with a Oncologist this week and know that I will be pressured to at least try the AI's but it would only be to appease the doctor I have all ready made up my mind. Of course I know that never say never life changes in a heart beat but I am hoping I can stay strong and just so no.
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DrMae: My breast surgeon wanted me to meet with a medical oncologist too even though I wasn't planning to take tamoxifen. She told me that he may not want to follow you if you don't take meds but you should go anyway. So I went. He was a kind person. He DID want to follow me even without taking meds. I thought that was nice. I told him my reasoning as to why I didn't want to take tamoxifen nor do radiation. He supported me in my decision. I have since decided to just continue having manual exams with a dr associate of my breast surgeon and having her follow me as I get ultrasounds every 6 mo for just being vigilent in case anything were to return. I may go back to see him too at some point. But I feel good about my follow up plan going forward.
Just tell your oncologist your wishes....they should support you. Also keep in mind if you don't like this oncologist you can always go to a different one.
Like you, I have tried to make positive changes in my life. My medical oncologist told me that IF my cancer returns it will probably be very slow growing like it is now. So I believe I could catch it early again IF it returns. I am happy with my decision. Everyone has to make their own decision regarding meds and radiation etc and any oncologist should support your choice whatever that is. Blessings as you journey forward!
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Jons_Girl Thanks for sharing. I am hopeful that they will follow me and I can get checks done with them even through I choose not to take the medication. Do you know if there is some type of registry that follows those of us that choose not to take the medication? From the research I did it seems like there is 30-50% of women who have Breast cancer either stop taking or never start the medication and don't appear to be represented in the studies.
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Hi DrMae:
I don't know of any registry like that at all. No they don't do any studies like that, that I am aware of...maybe because no company would sponsor the study?? But maybe studies don't have to have sponsors I am not sure. I would think someone though would have to pay for these studies?
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Hi my diagnosis was similar to yours in terms of the ILC tumour and was wondering what you did to naturally lower estrogen?
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livelovelaugh:
You may want to specify the persons user name that your responding to so they know to reply to you....just letting you know. Have a great w
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