Thinking of refusing chemo with 26 oncotype

AIs are aromatese inhibitors.

If your instincts are telling you no chemo , then Don't Do it. It's just a numbers game anyway. All doctors are going to say treatments because of the monies made . Do your own research . I don't regret not taking chemo and radiation . Both have really bad side effects for years. Pray about it . Get a good feeling deep inside before you let anything unnatural go into your body .

I am waiting for my oncotype to come back to make this same decision should they recommend chemo. Thank you for posting about this great question. I hope whatever you decide works out for the very best for you. This journey is such a struggle, we need to have faith in what we are doing with our bodies to keep ourselves strong in moving forward.

Meow - my BS told me I would have chemo too because they found a micromet in my SN. The fact is It wasn’t his call to make - it was my oncologist’s call. She ordered the Oncotype test. My score was 11. No chemo. My BS was so sure he was right that he had planned on a port being put in for surgery. I corrected that plan ASAP.

Sometimes I think there is a power struggle going on between the BS and Oncologist - at least it was for me.

Diane

It definitely does make a difference in your frame of mind, when you are doing what your convictions lead you to do!  I don't think that if we chose to REPLACE chemo/radiation with what we truly believe is good for our situation, we should be treated as if we chose to do NOTHING!  I find that not telling everyone about some of my choices makes it easier on me to move forward.  We are fighting CANCER, so why should we have to waist any of our energy fighting for what we truly believe is right for us??

etnasgrl - just curious why didn’t your oncologist order the Oncotype test for you to see if chemo would be beneficial? It’s the standard used now just for that reason to say there is no way to tell if it would be beneficial or not is puzzling to me.

Of course no test is perfect but this one provides you/your doctor with information about your tumor only and calculates what your recurrence risk is. Not an exact science but because of my score from this test - it was 11 -I dodged chemo. My oncologist said doctors have been overtreating women for years which is why this test is so crucial.

Diane

I agree, pupmon, that Drs. couldn't possibly recommend Chemotherapy because of the money they make on it.  If I believed that, I would be calling all Drs. sadistic!  Just like us, they believe they are doing the right thing, in our best interest.  It's how they were educated.  My first appointment, after being diagnosed, didn't go so well!  When I refused standard treatment, my Family Dr. ask me to put it in writing so she could keep it in my file.  She said that she didn't want to appear responsible for my outcome.  She said that she is certain that I will die if I don't do the recommended Chemo, Radiation, and Hormone Therapy.  Because I am so convinced that what I am doing will kill the cancer, I wasn't effected much by it, but my husband was horrified and we ended up having a huge fight when we got home.  He had been fine, up until then, with me making the decisions that I did.  Now when I have appointments with my Family Dr. or Oncologist, I leave him at home!  The fight was the most stressful situation that I have had since being diagnosed!  Stress has an effect on Estrogen levels and my cancer is Estrogen +.  I need to feel positive about what I am doing.  I am not saying that I will never change my mind about the decisions that I have made.  I am saying that it has to feel right with me.  Not my Drs. or my husband.  We have to make our own choices about our treatments.

etnasgrl, The most important words that you used above, besides "it's all a crap shoot" were "No regrets!"  Congratulations on that!!   Even if our way isn't perfect, it is still our way and if we are willing to own it, then the outcome is always easier to take.  I would rather make a choice and be wrong than have someone else make it for me and it be wrong!!

At age 35, women have a poorer prognosis with breast cancer...statistically. If you had a lower score than 26 and older than 60 years of age I wouldn't be concerned. There are a lot of years ahead of you too to develop cancer. BUT, that said, it is always your decision as to what you are comfortable with. Chemo is no walk in the park; but getting diagnosed as stage 4 is worse.

wondering how you are currently doing after declining post treatments. I need to make a decision this week and am leaning toward NO further treatment (lumpectomy pathology" no evidence of tumor"; cleared margins after re-excision) do not want any further treatment. want to rely on nutrition, cbd oils, spiritual , lesses stress in my life.

My Oncotype score was 27. I had no lymph node involvement and clean margins after double mastectomies. I made the decisions before I got my results that if it was over 25 I would have chemo. There had been so many torturous decisions to make after diagnosis that I just didn't want to be confused again. So close yet so far away. I wasn't expecting to need chemo and cried when I got the results. I'm done with chemo now and feel like I've thrown everything at this. I'm ready to start living and not waking up every morning with the words 'I have cancer' as the first thought that comes into my head. My grandmother lived to be 100 so at 55 it felt like a good idea. I wanted to give myself the best odds.

Just wanted to add my two cents.even though this is an old thread.

Getting a bmx is what pushed me off the fence and onto the no matter what no chemo side. It would be different if I wasn't completely alone or had kids but I am completely alone and childless (not by choice) which is one of the many reasons I decided no chemo no matter what the oncologist or the oncotype says. recovering from surgery has shown me that I don't have the mental strength to deal with not only  the side effects of chemo but the devestation it puts on your existence as you endure it.

I told the counsler that chemo is for people who have a future to look forward to, I have nothing to look forward to in the future this cancer murdered what little hopes and dreams I had left so if it kills me in a few years or a decade it doesn't really matter.why would I put myself through that torture to buy a few more years of nothing but misery. 

I think there are a lot of things a person diagnosed and choosing treatments have to take into consideration.

 I got nobody and nothing to fight for so I feel putting myself through that hell is just not worth it iam feeling the same way about tamoxifen too although I'm a little more open minded to it then chemo.i have a super sensitive system that reacts to EVERYTHING. I get side effects that are low on the list because they are so rare and this is for regular medications so imagine what I'm going to have to endure if I chose chemo and even tamoxifen. 

Someone who has a significant other,a loved one  or a child who relies on them to be there, different story. There is a reason to fight, a reason to go through that misery.

Yes my life will be much shorter and my death will likely be painful but I'm ok with that because it hasn't been a life worth living for close to 15 years now  thanks to my body betraying me with other life debilitating (not life threatening but my ability to function out In the world and even being a part of it  was greatly reduced)chronic illnesses. Now I got cancer on top of it.

i think in the end it depends on a persons life and health circumstances and what that person can live in the in long term.

Best wishes to all no matter what their choice is, cause like DNA it's individual to each one.

It’s your call, your life and your body. Don’t let a medical professional or anyone else talk you into doing something you don’t think is in your best interests. I’m not saying your doctors are not committed to your best interests but they have a protocol to follow despite the fact BC is not a one size, fits all disease.

My Oncotype score was 11 so I dodged chemo. I’m not sure I would have done it if my score had been a lot higher and/or my oncologist advised it.

Just don’t second guess yourself or look back and say what if.

Diane

That's great, Neow13!  Had you done Chemo, you may have gotten the 7 years but how comfortable would they have been!  Quality is important too!  I am grateful that we all have the freedom of choice, even though Doctors make you feel that you don't.  Exercising your power of choice is the best form of exercise.  Physical exercise comes a close 2nd )

Rachelcarter35

I just have a little issue about what you said. I will use myself as example.

For many there are little to no side effects but for people like me who have super sensitive systems, side effects are guaranteed. Bad enough that I would need medical help for them which means more pills. For me knowing how I react to all medications I take (even the ones pharmacists say oh there's rarely side effects. Yep.I get them) I'm not willing to even take the chance of aggravating or creating new health issues that will ruin what little quality of life I have. Also it's not just the side effects it's also the risks that get increased and guess who's already on the multiple risk list due to genetics. Yep me.

I looked at it and decided which was likely to kill me first: the cancer or the pill that I'm supposed to take that only has less then a 50% chance of keeping it coming back again. And I decided the pill was more likely to do if the risks didn't kill me the side effects ruining what little quality of life I have left would push me over the edge of taking my life. And that increased risk list for tamoxifen well I'm on the possibility it might happen list right now due to genetics and illnesses, I take this pill I go  on the it's gonna happen list it's just a matter of when list.

Many of us who choose no treatment or no further treatment do not go into it lightly and with no thought.

 Especially if you already deal with a chronic illness you know how your body is going to react to medications and synthetic chemicals mine has always gone nutso and made me sick as a dog when it's related to my hormones.i also have the unfortunate issue most often of not reacting like one should to medications as I unfortunately found out with domperidone when it had the opposite effect it was supposed to  I won't risk it causing a flare up of my other chronic illnesses that either takes years to pull out of or I never really do and yes the years thing has happened to me. Over 8 years before i got a resemblance of sorta normal again. I feel like you think people like me base our decisions on fear and it does contribute but it's also strong knowledge of our bodies and how it works and reacts to things that help cement our decisions. We also take our quality of life before treatments into consideration. Due to multiple chronic non lethal  but life ruining illnesses, the unseen types that don't show but keep me from living any type of regular life my quality of life is already in the crapper.  Taking a pill that's barely even 50% effective of keeping reoccurrence away is not worth it, if it was 75% I would give it a try but half a chance and no guarantee your the good half  is not worth the price I would pay. If cancer wants to kill me it's going to kill me. For now I'm just going to keep living each day. 

It's a balance of figuring out if it's worth the price paid to take it. I decided it wasn't. Maybe it means a shorter life but the one I got ain't all that great with my body constantly betraying me anyways. 

Just saying my reasoning for no tamoxifen, every person who makes the decision, has a valid reason. Not just "fear of side effects".  It plays a role but it's not the main reason.

Sorry if I am giving off a pissy vibe but I'm tired of people assuming me and people like me are going "oh noes look at that side effect list,look at all these people with horrible side effects , nope not taking it" like  it was a five second decision. Trust me it's a been gone over and gone over and gone over again decision.

Rachelcarter35 

It's not that I'm massively offended so no need to apologize, it's that I feel some people come in here with misconception thinking we are dumb and unable to make our own fully informed decisions about our own bodies and admonishing us like we are unruly students and they a strict school teacher.

 This isn't a should I take tamoxifen or not? Thread it's I'm refusing treatment even though conventional medicine says I shouldn't thread and if you read through the thread you can see that many of the people in it haven't made the decision lightly. We know the cost if we are the unlucky ones or are already the unlucky ones. So,unfortunately as is my way,I get my back up when someone comes in with what seems a lecturing tone that seems to be saying "don't be a scaredy cat,your making your decisions on fear"as if that was the only reason for the decision that has been made. I don't think that was what you were going for but reading it  was what my brain translated it into as I read what you wrote.

You will find the newbies on the fence tend to gravitate towards the should I do this treatment or shouldn't I threads which are the first ones I looked at,then When I decided no more treatments I gravitated towards ones like this one to see if there are others like me.

 I have been on many threads (I'm on so many at this point) but I found a few people who like me have had a lifetime of chronic illnesses that put them at so much more higher risk on tamoxifen or worse would knowingly aggravate conditions they already have brought down their quality of life, that the idea of even trying to risk it happening isn't worth it. Whatever the reason a person has for not choosing to further treatments or to have any is valid for them.

Just saying, your post could be misconstrued in a way you weren't planning on. I guess I'm lecturing in my way too as I try to point out that many who make this choice to it with knowledge and  acceptance of what might happen in doing so.

Best wishes.for your future and your health.