My choice--refusing treatment
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Hello, everyone; I am just dropping in to let you know that my Bone Scan was clear, so my oncologist is not likely to order another one. She felt that the hospital where I had it done has been exaggerating the "possible" metastases bit. I also got the results of my Vit. D test this a.m., and they are good, so was told not to increase my intake. It has been hard to deal with not consuming anything with calcium in it, and that is a long list, but I will do anything to get the blood calcium levels down. One thing I realized yesterday is that I finally am back to the strength level I was at in the spring of 2017. I can go up and down stairs without having to stop and rest, and no longer ask my husband to carry stuff for me, unless it is really heavy. Yesterday he commented on me taking five water bottles (3 cups each) up at one time.
In case I don't make it back on before Xmas, just want to wish everyone Happy Holidays and a Great New Year. We have a lot of coming and going here for most of this month.
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53nancy - CONGRATULATIONS on the clear bone scan and solid vitamin D test results!
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Helenlouise
Thank you.
Pebblesv
Thank you, when I made a list of pros and cons all I got were mostly cons. More so after the oncologist said only a 30% chance of reducing the risk of reoccurrence. I probably stand a better chance making lifestyle changes. I definetly need a fix on the right and I still feel he put too big implants so I hope they fix it up. I'm not hoping for miracles just reduce the freak show on my chest that exists now.
Rosebella
Your lucky your oncologist is seeing you every so often. Mine was one and done. I no longer see her ever again. Apparantly that's the thing they do here, one your treatments are over (or in my case choose no more) your file is closed.
It breaks my heart how ostracized I feel by the medical community because I am not following conventional treatment. Pretty much abandoned really but It is what it is.
Blessed be all.
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Ladies - just a quick note from a long-time BCO member. i'm not on this site as much these days, but i was researching something for a friend and came across this thread.
It will be 10 years in Feb 2019 that i was diagnosed. I had done a big fitness push, lost about 35 lbs, was in the best shape of recent memory - running, weight lifting etc. In fact, my smaller-sized boobs allowed me to notice the lump!
I went through a lumpectomy, chemo, radiation, herceptin, 3 years Tamoxifen and 2 years Arimidex. That's a lot of treatment, and it was not easy.
But now here I am. And the whole experience is further and further back in the rear view mirror, in fact most of it has dropped behind the horizon line now and I rarely think about it. My life is happy and full. I'm not the same as I was before, you cannot go through all that and not be changed. But some of the changes are good ones - I live in the moment much more, do what I want (not what I'm 'supposed to' do), and have no patience for people who freak out over minor irritations, lol.
I eat mostly clean, don't drink (or very very rarely), work out regularly, take a lot of supplements. But I did all that before and got cancer anyway. So while lifestyle changes are wonderful, I don't have total faith in them.
Believe me, I KNOW how horrifying the new diagnosis period is. There is NOTHING like it. I would never minimize it in any way. But I also know there is life beyond treatment. At least for me there has been and I feel very fortunate.
I just wanted to chime in as someone who has passed through all the treatment and am so glad it was available to me.
Anyone with any questions or want to discuss further, feel free to send me a private message.
In love and sisterhood, Amy
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Amyisstrong
Some of us are not as strong as you, after damn over a decade of life ruining chronic illness, just to find a solution and develop another chronic illness bandbox then cancer sometimes we just have enough. I don't want to go through 5 years of side effects and there will be side effects cause even if the pill doesn't cause anything too severe it's going to aggravate oneof my chronic illnesses that is GI related (all medications I take cause issues which is why i try to avoid taking any) to the point where I will kill myself just to stop the constant suffering.
I don't think diet and exercise is a miracle cure but neither is a pill that only gives me a 30% chance of not having a reoccurance that will make me so sick I will wish I was dead anyways. Every person on here is different, their experiences and lifestyles are different,how they deal with things is different. You got through it, your life is better. You are very lucky.
I'm glad that these treatments are available for you and others and that they can be successful but it's not for everybody. Not all of us will get over it if it's going to cause so many issues we can't even get through it. I'm one of the people who's just had too much and can't take anymore and that includes the misery that taking tamoxifen for five years will give me. If I get sick again.i get sick again there are no guarantees pill or not.
Thank you
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Jadedjo...just want to say no one can understand chronic illness unless they go through it. Ive been dealing with chronic pain associated with multiple autoimmune disease for over 15 years. It erodes you and steals your joy. I get it!
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AmyIsStrong - thank you for posting a survivor story, and that you went through everything and came out fine on the other side. It's very encouraging to hear from others who have gotten through this with no recurrence!
Jadedjo - I think you're doing the right thing and making the right choice for you and I'm here supporting you and cheering you on with the diet and lifestyle changes!
I heard someone say that we're all snowflakes and different and have to figure out what works for us. I believe that.
For me, I go back and forth, seem to change my mind every day re: tamoxifen. I haven't started yet as I was going through the radiation treatment and radiologist didn't want me to take tamoxifen at the same time even though onc said it was OK. So I got a temporary reprieve. But I just got done with radiation treatment and now tamoxifen is supposed to be the next step! So... 😮
I know you are not feeling any silver linings in this but I thought of one for you - being on your own, you have full independence to make the decision that you believe is right for you and no one is holding you back from that. I might actually decide to take my chances with diet and exercise and not take tamoxifen if it was just me and I didn't have any pressure from my family!
I've read enough now to really believe that diet and exercise go an incredibly long way towards healing, and I'm so scared of the potential side effects of tamoxifen. Plus we did the surgery and all the studies and reading say that's the most curative thing. Everything else is just odds after that. But since my oncotype score means tamoxifen was my ticket out of chemo, I KNOW there would be hell to pay if I told my parents, my sister, my husband that I was going to forego tamoxifen and try a natural route. So I actually feel my hands are tied a little bit in that, and the best I can do is figure out what I can do to avoid or minimize the potential SEs as much as possible. You - your hands are free, and that's a huge thing.
Sending hugs and healing and hope that we all get through this with our chosen paths
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Dtad
...Oh man....you just described it perfectly "it erodes you and stills your joy" mine has gotten me to this point I am broken and too damaged. Thank you for explaining it so eloquently. I'm discovering the hard way if someone hasn't gone through it,they will never understand it and I can't explain it to someone who hasn't had to endure something that destroys your life so much you don't really "live" anymore.
Pebblesv
Thanks but Honestly if I had people to live for like children and husband my decision would have been different. Maybe not the chemo but the tamoxifen. One of the reasons I'm not taking it is I have no one in my life that makes it worth it. Didn't even bother to find out my oncotype because they won't do it here unless you say you might do chemo and I straight up said no although she said it wouldn't change much like 4% maybe not worth the risk. Neither is 30% for the tamoxifen (the number she gave me in reducing my chance of reoocurance)if you ask me.
wish I did have someone, maybe I would have hope.Amazing how two people on opposite sides see things so differently,huh? Weird how the world works.
Thanks and best of luck to you on your tamoxifen journey if you are going to walk that path, hopefully you will be one of the lucky ones with no side effects.fingers crossed here.
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Jadedjo - It's so interesting that you say your decision might be different if you had someone... my family factors hugely into my decision-making process, which I know is a positive and a negative all in one. Funny how we see this differently, totally true! A little bit of grass is greener on both sides.
I still have that fear of - what if I took the tamoxifen to placate / please my family, and then ended up with the much worse endometrial cancer that could have been avoided entirely if I just didn't take tamoxifen? Trying not to go there but I have thoughts like that sometimes. Which is why I say that if it were entirely up to me, I wouldn't risk it, and take my chance on diet and lifestyle to keep the breast cancer from coming back or metastasizing.
Then when I try to steel myself up to take tamoxifen, I have to think well the risk of the endometrial cancer is ridiculously low and probably the risk of the current cancer coming back greater, so I'll take the tamoxifen to reduce that risk...
Honestly, starting this process, it's kind of amazed me (not in a good way) that the treatment for a very beatable breast cancer with extremely high survival odds (90%+!) is so debilitating. For what's supposed to be a slow growing, very beatable cancer, women have to go through surgery, radiation, around 6 MONTHS of chemotherapy and 5-10 YEARS of hormone therapy. All of it comes with life-altering side effects. Much of it changes a woman's identity. In the meantime, a work colleague of mine had prostate cancer and he did surgery, then monitors his blood levels every few months. That's it. No chemo. No radiation. No pill for 5-10 years. My other friend got a recurrence of a much more aggressive melanoma in his ear, and while he had to go through multiple surgeries to remove it (because they kept not getting clear margins) and reconstruction on his ear, there's also no follow up for him. No chemo. No radiation. No pill for multiple years. Just see the dermatologist every few months to make sure it's not back. Sadly, my mother-in-law had stage 4 lung cancer - but the treatment for that was 4 sessions of chemo. It's just weird to me that treatment for Stage 4 lung cancer is about 2 months of chemo, while treatment for Stage 1-2 breast cancer is 6 months of chemo! Plus surgery. Plus radiation. Plus hormone therapy. It's not like the side effects of chemo are any less - there's still neuropathy and losing hair and damage to heart and lungs etc. I guess that's why they've come up with hormone therapy as an alternative to chemo for many? It seems like the medical community is starting to realize they've over-treated women for breast cancer for years, and they are pulling back some now, but who knows, maybe 10 years from now they will actually prescribe diet and exercise and not all this crazy stuff we are told to go through!
OK, that's my rant. On another side of things where we feel opposite, I know you mentioned you feel left behind a bit with the doctor's not wanting to follow up since you said no to chemo. I'm so sorry they did that to you and for your sake, wish they'd follow up just a little bit with you. For me however, I prefer less follow up. I want to be done and set free on my own after this surgery and radiation treatment is finished, come back in a year for simple tests just to show I'm in the clear, and that's it! I don't want to have to meet with the doctors every 3 months. I'm so afraid that when I meet with the oncologist this Friday he's going to want to do all these scans again (and if so, I'm going to ask why when I just had CT and bone scans a couple months ago), I think because there was cancer in my sentinel nodes they are going to want to do more scans more frequently and not give me a CHANCE to heal. So I don't know what I'm going to do if they want that, but in my opinion they are being TOO vigilant. I did the surgery, I did the radiation, I will take the tamoxifen, so I want to be left alone to manage this MY way and do the diet and exercise I know can make such a difference, and give me a year to do it and let my body heal!
Anyways, I do know I'm fortunate to have my husband (who juices for me!) and the little pup pups who help put this in perspective so much, and even my family even though it's pressure. And I can't even begin to understand what you're going through... so I just want you to know that in a way, you have me and all the other women in this community that you've been chatting with and we're there for you. I want you to survive, I want you to succeed with your chosen path of diet and exercise, I want you to get to the point where you can look back on this one day at one of the most challenging times of your life and say, "Wow, I persevered and beat that and came out OK."
We will keep one another posted on our respective paths! Your cheering section is here (plus Domino of course). Hugs and healing. And thank you for the well wishes for my path that will prob include tamoxifen. Fingers crossed for us both!
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Something was stated above about chemo with stage 1 and stage 2. I might be understanding this wrong.....but I was stage 1A and grade 1 0/2 nodes. Chemo wasn't ever something I was even asked to do. My onco never did the oncotype test due in part or maybe all because of my grade of tumor. I believe they look at the grade and stage and whether you have node positive br cancer before talking about chemo. Maybe size too plays a role in the chemo option? Not sure.
If grade is above 1.....and any nodes are positive I think they probably consider chemo. Maybe they just look at the nodes mostly regarding chemo or no chemo.
I agree I think things will change in the future. I have chose not to take any tamoxifen. My husband and family supported my decision. I chose no radiation either. Just surgery. Just doing diagnostics every 6 mo. Doing well so far. Trying to eat the best I can and am meat free. Exercise I need to be better about but living on a farm I get quite a bit of that. I do think all that plays a role in good health. But nothing is for sure. The air we breathe is filled with who knows what. They don't talk much about environmental things. I live in the country but near christmas tree farms which they spray via helicopters.
It doesn't really matter where we live our world isn't what it used to be years and years ago.I agree with you all.....we are all different....amen to that. Nobody should give advice or tell someone what choice they should make. Love you all! Your decision is the right one!
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It’s our bodies, our lives and our decision how to or if we go through the entire prescribedprocess.
I am on the other side about treatment and meds. I had radiation and took Tamoxifen for 5 years. I had little problem with either one. There are women who suffered debilitating side effects from both but there are also many others who didn’t.
I was frankly afraid not to go the conventional route. To me it was like playing Russian roulette with my life. I never once considered doing otherwise. I am a poster person for worrying and I didn’t want to second guess myself or look back and wonder what if..
I am 7 years out last August. My BC was Stage 1b, Grade 1 IDC. I did have the Oncotype test because I had a micromet in my SN. My score was 11. No chemo as a result.
Good luck ladies!
Diane
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Hi jon_girl - your case with no nodes and very early stage 1 at less than 1 cm is a case where chemo is unlikely. Although it varies by hospital, some say they want to do an oncotype test if cancer is not in the nodes and if the oncotype is high, they would still recommend chemo. Back in the day 10+ years ago they did chemo in almost all cases. Medicine has gotten better - when the oncotype test came out, they admitted they were overdiagnosing women for years on breast cancer!
Also back in the day they did radical masectomies, you wouldn't have even had the lumpectomy option. But lumpectomy arose as a less invasive option to masectomy, sentinel node biopsies arose as a less invasive option to full axillary node biopsies, tamoxifen arose as a less invasive option to chemo for ER+ cancers for some women. Also if you're cancer was ER1 or HER2+ they might recommend chemo even at stage 1.
You are very, very, very, very, very lucky that your type of cancer came out with the exact stats you came out with. That has allowed you to escape chemo, and also have a whole lot more confidence just walking away without even taking tamoxifen. My differences from yours are that the lump was bigger (1.7cm) and there was cancer in 2 sentinel nodes. They were actually talking chemo for me at stage 2 until we did the oncotype test and I came out with a low oncotype score.
Anyways you might find these articles interesting!
Oncotype DX: https://www.forbes.com/sites/elaineschattner/2014/... - story in Forbes in 2014, very recent stuff!, with the awesome headline, "
Oncotype Test Could Reduce Overtreatment Of Early Stage Breast Cancer
And more about the Oncotype DX on this site: https://www.breastcancer.org/research-news/oncotyp...
Interesting story about Shirley Temple, who had to insist on a "simple" vs. "radical" masectomy for her breast cancer. Today she probably could have done a lumpectomy. http://breastcancerconsortium.net/the-lives-they-l...
BreastCancer.org has a useful article on when chemo is usually recommended, which is across all stages: https://www.breastcancer.org/treatment/chemotherap... - because your tumor was hormone positive, HER2 negative and no lymph nodes, chemo was luckily not on the table for you.
My brother-in-law said it best - sucks to get cancer, but if you're going to get a type of cancer, you got the best type! So there's that. Good for you!
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Diane - thank you for sharing your story. As someone who is probably going to take tamoxifen, it's really encouraging to know that you got through it with little trouble. Do you have any advice on how to best avoid SE's? Did you do a hysterectomy or not? I know a lot of women do but that's not on the table for me unless there was a dire need, I really do not want to remove more of myself to get through this.
I had little trouble with radiation. I am worried about tamoxifen though. Any natural ways to avoid side effects? Diet? Exercise?
Thx much for your insight too!
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You are welcome Pebbles. Actually I didn’t change my lifestyle much. I’m a very active person anyway - hyper in fact - so I am always on the move. As for diet I am taking meds to manage my cholesterol because it was elevated and my internist prescribed meds to lower it. Definitely worked because my numbers plummeted.
No I didn’t have a hysterectomy and like you I’m not having one unless I have to. Keeping what parts I have intact too as long as I can.
I’m sure diet and exercise will help if you experience side effects. My philosophy is everything in moderation. Right, wrong or indifferent I am not going the total abstinence route.
The joint pain was worse at night so I propped my leg on a pillow and it helped. It wasn’t an every night thing but when it did hurt the pillow did work.
I strongly encourage you if you do have problems dealing with the drug switch to something you can tolerate. No suffering in silence. We have all been through enough without more aggravation to be continued.
My sister started out with Arimidex and had all kinds of problems with it so her MO switched her to another drug. Sorry I don’t recall which one.
Remember it’s your body and your life. Do what’s best for you.
Best of luck!
Diane
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I had 2 appts today back to back. One was a diagnostic mammogram taken on the affected side. Last one was taken prior to radiation 6 mos ago. The results today were good. I was so excited. Then, I went to see the MO. My original MO resigned right after I finished radiation. Right at the critical decision making time for anti hormonals. Since then, I've seen 2 different substitute MOs. All of them hit the drug issue trying to convince me to take them. Today was no different. I have a Masters degree in Public Health, but they still think they have to give me the same statistics everytime and explain what they mean. I'm sick of it. Everytime I see a doctor now, it ends up being a fight. I may not go back. It blew my day. I've been depressed ever since. Now I have to go do battle with the RO tomorrow. I had a whole list of things to check. That took about 5 minutes. Those questions were brushed off quickly. But, the next 15 minutes or more was spent rehashing the same info about drugs.
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marymc86:
I hope yr appt with RO went better today. I’m here to support you. Whatever decision you make regarding meds
I only did surgery. And there are onco nurses who questioned my decision about meds etc. I was in tears more than once. My MO has supported my decision. He has been great!!
Im not sure if you have more options in yr regional area to search for a supportive MO. But they are out there!! And I would think yr insurance co should allow you to look for a MO that you like. My insurance co said I could look til I found one I liked I believe. And luckily I found a great one first one!! I interviewed two ROs before I found one I liked. But then I decided not to do radiation. If I ever needed to do radiation down the road I would have him be my RO tho he was a great doctor
But I say all this because I want you to know you have the right to choose docs you like! And you can choose whatever you want regarding care post cancer. You have that right.
I’m here for you!❤️💐
I hope today went better with the RO. Never give up! There are great onco docs out there! Keep looking
Sending a hug yr way!🌺
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hi pebbles:
Sorry I haven’t responded til now. Thank you for the links! Yes I was very lucky. My Surgeon (30yrs in practice) told me that I didn’t need the oncotype test. She said with the testing I had done grade stage that she knew it would be very low. She said it’s a very expensive test and said my numbers would more than likely be very low. So she didn’t see the purpose of doing it. Yes I was very lucky. So far so good!
I’m trying to be very careful with my diet and trying to back off any controllable added stressors. Not always possible but I try. lol
On a side note....I did genetic testing because my maternal aunt had breast cancer dx two wks before I did my maternal gma had breast cancer twice and died from it I was all negative so it’s interesting how one can have so much cancer in their family and be negative on the gene testing I’m not complaining tho!😉🎄merry Christmas!
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jons_girl - thank you for being an inspiration! It’s honestly so helpful to know there are people who just did the surgery and beat this. I really believe in the power of nutrition too and exercise and I’ve also cut red meat and dairy. Wishing you continued success and merry Christmas as well!
Diane / edwards750 - thank you for letting my know what you did too. I do like your everything in moderation philosophy. Interestingly enough I just got my blood test results and everything is normal except slightly high cholesterol. So I’m trying to reduce that with less oils before I start tamoxifen.
Marymc86 - that is maddening on the treatment you are getting from the MOs! You should be on a high right now with your good mammogram results. I know the frustration of having to fight to follow the path you know is right (for me it’s debates with my parents and sister, and I’m going now to take tamoxifen! Just giving it a month first to let my body heal a bit and prep for it - something a lot of people with fewer side effects did). Anyways we are here to support you!
What’s most important is that your scans are clear so what you’re doing is clearly working! Celebrate
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Thanks, Jon Girl.
Yes, the appt with my RO yesterday was very surprising, in a pleasant way. She listened and talked with me for a long time. I felt like I was chatting with a good friend. Funny too, because she and I got off to a rocky start. I stuck with her because everyone told me she was great. I also stayed because she knew things weren't right and she made an attempt to correct it. She has turned out to be my favorite. I'll stay with the group until they find a replacement for my original MO. But, I told my RO about what happened and I said I didn't want to go back. She talked me into going back and she helped me with what to say to get them to understand I've made up my mind not to do the drugs this time around.
I know you didn't do radiation. I was scared, but it turned out fine. I had the hypofractionated shortened course. I'm glad now that I did.
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happy 2019 bblue, am in a similar boat & can't decide about masectomy w/reconstruction; diagnosed last march by 1st dr and had sentinal & lumpectomy- told all clear margins, blew off suggested radiation & drugs til 2nd opinion this past sept; new dr wants masc w/reconstruc and i started tamoxifin in sept.
unable to wrap my head around such severe action when i'm stage1/grade 3/ onco 26/ 56 yo basically healthy.
am i being naiive thinking that clear margins, arimidex & healthy lifstyle enough to carry me 20ish years?
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You have early stage BC but Grade 3 and the intermediate Oncotype score are concerning.
Idk if you are being naive but FYI I also had Stage 1(b) but I was Grade 1. I had a lumpectomy and 33 radiation treatments. My Oncotype score was 11. I took Tamoxifen for 5 years. I was 7 years out last August.
Healthy living is ideal and we should do that anyway but it’s not the only recipe to prevent a recurrence. There are countless women who lived the healthy lifestyle and still got BC to begin with.,
It’s your call but IMO you are playing Russian roulette relying on Tamoxifen and healthy living to keep a recurrence at bay. There are no guarantees of course but I never considered not doing radiation and my grade and Oncoscore were lower than yours.
Diane
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Cat5,
It's really only about odds and statistics.
Mastectomy would improve your odds of not getting a local recurrence by a lot, and of not getting a metastatic recurrence by a little. But you could well be perfectly fine without it, and you could well end up on the wrong side of the odds even with it.
I think you have to do what feels right to you and what you can live with.
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Cat 5, I had clear borders, stage 1 no node involvement. Had oncotype of 27, which took everyone by surprise. Had lumpectomy and hypofractionated radiation after a breast reduction to reduce the risk of complications due to radiation. I skipped chemo and so far am not taking anti hormonals, and probably won't. But, I was told and have read that lumpectomy plus radiation is as effective as mastectomy at preventing recurrence (local). If you had a second opinion, sounds like you had some concerns. But not doing radiation is probably why the second doctor suggested mastectomy.
I never considered not doing radiation. But, I know most would probably say I'm nuts for not doing chemo and antihormonals with an Oncotype score of 27. Maybe I am nuts, but, this is my situation. There is still a chance they'll talk me into antihormonals. But, I'm at peace with not having the chemo. Not this time anyway.
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Marymc, I didn't go with chemo and my oncodx score was 34.
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Yes, I know your story Meow13.
Did you do radiation?
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Nevermind, I see that you did.
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I asked if you did radiation. Then, I looked and saw that you did, Meow13.
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thx mary- 1st dr said lumpectomy then radiation/chemo; had lumpectomy & was scared shitless over the thought of radiation; went to 2nd dr said chemo- 3rd said 1 side masectomy so i began interviewing reconstruction surgeons; this one put into perspective that it's 50-50 ,same as BRACA folks- am still unable to wrap my head around such traumatic/drastic actions for stage 0; good luck to you & plz keep me posted -
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thx sala! good luck to you sister.
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thx for weighing in diane- best to you
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