Has anyone refused chemotherapy?

Chinneymae

Chef127: That was encouraging for me. I will be going to my onco on the 8th to give her my decision. I have decided to not take the chemo or arimidex. I talked with a lady here in my hometown. She had IDC which was stage 2 with no nodes involved. She had the partial mx. Her onc recommended radiation, chemo and tamoxifen (arimidex hadn't come out yet). She refused them all. That was 10 years ago and she is still going strong. She had triple by pass surgery 5 years ago. Had she taken the chemo I feel sure her body would not have been able to handle that surgery or the chemo could have destroyed her heart.

chef127

Hey Chinneymae.

Everyones BC has different features. A lot of features are not even checked or dx'd. We are lumped together and thrown on the chemo train. $$$$$$$. Sometimes it helps and sometimes it recurs or moves on to stage IV. Its a crap shoot. I'm taking my chances w/o the drugs. My heart breaks when I see women who's ca came back after enduring a year of tx. IF mine comes back I don't know how I'll treat it, can't see into the future, but I think I'll stay on my current path and try to stay healthy. Im a little afraid that I went against the standard of care,or I would'nt be here, lurking, reading the good and the bad.

I recently started to take organic REISHI mushrooms that is an immune booster and so much more. Research it. It is powerful and completly natural.

Good luck w/your onco visit, I'm sure she will show concern about HER2. There are some girls who have done the Herceptin without chemo, but it has se of its own...........................xoxo

Chinneymae

Cher127: you are absolutely right. Chemo is no guarantee. I see these women on here talking about having chemo as if it's gonna kill any cells that "might" have gotten through their lymph system. It's like they are led to believe that it will definitely take care of it when in fact there is no guarantee it will. It's like a tornado going through your system taking out alot of the good cells and maybe getting a couple of the bad cells, but some of both are left in tack. It's like you said you are taking a big gamble with your immune system in hopes that the cancer cells will be destroyed. Then if it's not and it does come back your are too weak or have permanent side effects from the first Chemo that you aren't physically or mentally able to fight it with chemo again. I just don't want to use up all my resources now when I have no evidence of disease.

I will definitely look up the Organic Reishi Mushrooms.

Michele2013

Chemo does not kill all cancer. I had a petscan in November and cancer lit up in my nodes. When bs placed my port she took out the nodes that lit up. Two had ece. Did AC/T then had BMX in April. One lymph node had ece. Wtf!!! Cancer growing outside the lymph node while on chemo. Maybe that's why I am grade 3. Chemo has caused a PE, esophagitis, osteopenia. I walk sometimes like I am 95 and I am only 45.



But hey, I am alive:)

Chinneymae

Well I went to my oncologist today and she wasn't really happy about my not doing chemo, but she did respect my decision. She did say that she felt I was making a huge mistake not to take the arimidex due to the fact my onco score was high which puts my chances of recurrence way up. I finally agreed to at least give it a try. If the SEs are more than I can bear, I will just stop it.

maltomlin

I can only relate my experience and of those around me.

I was dx over 5 years ago and at first chemo wasn't on the cards. After surgery I was told that I would need it.  I googled (a big mistake) and came to the same conclusion. The Christie ( a major hospital) offered me a trial, which I took. Chemo every 2 weeks instead of 3. I found it hard but it was soon over and I was off on holidays and enjoying life again.

During this time I lost 2 chemo buddies, both hadn't had chemo.

A year later. a close friend was dx with her+ bc. She was so scared of chemo and refused it. Despite my trying to persuade her, she was too scared. She died 12 months later.

Those colleagues/friends who have had chemo are all still here, many years after.

I know we're all worried/sceptical about chemo, but to me it still offers the best outcome.

I can only speak from my experience.

maltomlin

I can only relate my experience and of those around me.

I was dx over 5 years ago and at first chemo wasn't on the cards. After surgery I was told that I would need it.  I googled (a big mistake) and came to the same conclusion. The Christie ( a major hospital) offered me a trial, which I took. Chemo every 2 weeks instead of 3. I found it hard but it was soon over and I was off on holidays and enjoying life again.

During this time I lost 2 chemo buddies, both hadn't had chemo.

A year later. a close friend was dx with her+ bc. She was so scared of chemo and refused it. Despite my trying to persuade her, she was too scared. She died 12 months later.

Those colleagues/friends who have had chemo are all still here, many years after.

I know we're all worried/sceptical about chemo, but to me it still offers the best outcome.

I can only speak from my experience.

cookiegal

This is an old thread...but it brings up a really interesting point. Since 2008 there has been a huge change in options for borderline women.

Chinneymae

Had I had node involvement and a higher stage of cancer, I would have definitely had chemo. My oncologist says I am technically cancer free. I just don't feel I need to risk the side effects of Chemo for 7%. I knew two bc survivors that had early stage bc and had the mx did not do chemo, radiation, or hormone therapy and lived more than 30 years before dying of something totally different. I spoke to one that had a partial mx did no chemo, radiation or hormone therapy and it has been 10 years and she is doing great!! It all depends on the stage, nodes, where it is located, er/pr and her, oncotype dx, aggressiveness of the cancer, etc. You have to take all of these things into consideration and do your research and become knowledgeable of all your options and most of all PRAY. It is also very important to have a positive attitude, which is very hard to do when facing a beast like this. You do what you think is best for you because you know your body better than anyone else. If you make your decisions based on fear, you are making a big mistake.

GlobalGirlyGirl

I just made the decision to turn down everything - chemo, rads, and Tamoxifen. I'm going alternative. I get to tell my oncologist/hematologist on Thursday. I know this is the right path for me.

Chinneymae

Globalgirly: I turned down the Chemo. I'm just really scared about the Arimidex. I've learned how to make Encapsulated Vitamin C and have been taking it in high doses. I've also gotten some other things and am buying organic where I can.



I picked up my prescription for the Arimidex today but I am so torn. I'm afraid if I do and afraid if I don't.



I see you only did the lumpectomy. I was told I could do the same, but after being on here and reading all the bios, there were so many that did lumpectomy and ended up right back a few years later having the mx/bmx and then some had mets, I decided to just go ahead and get rid of them now and be done with it. I also had ADH in my left breast in 2006. I know we all have to do what is best for us. I met a lady that did the partial mx in 1996 and refused everything too. She just celebrated her 12th year NED this past August and is doing great. She had stage II bc. Did you have an oncotype dx done?

chef127

Hi GlobalGirlyGirl,

Feels good to make a final decision, congratulations on yours. It is much easier to hand your body and life over to the med community and hope they make the right choices for your care. The alternate route comes w a lot of negativity, my first onco told me I was going to die without the chemo. MY choice, MY life,  MY death.

Move forward w a healthy and thoughtful lifestyle.............xox

GlobalGirlyGirl

Chinneymae - no. My oncologist didn't order one. Even if he did, I was already leaning no to all.  I'd be afraid of Arimidex. I'm afraid of Tamoxifen. Maybe afraid isn't the word? More annoyed that women are getting recurrences after stopping. This is why they now recommend staying on it for 10 years. Thing is, you can't be on that stuff forever. And they know it.  It's good that you're buying organic when you can. The pesticides are crazy. 

chef127 - OMG it feels wonderful to have made a decision. No more back and forth, back and forth. Chemo, rads, and Tamoxifen just didn't sit right with me, and I followed my gut. Even my psychiatrist looked a tad skeptical when I mentioned the oncologist was pushing chemo so hard. He said that if I do chemo and rads that I'd have to live with some serious side effects. He said, though, that he hopes I make decisions based on logic as well - not just emotional.

I've already made a deal with the devil when I went on my psychiatric meds. I have night sweats, and I traded my short term memory and concentration all for stability. I willingly made that choice. The cocktail I'm on has worked for 10 years. I'm high functioning. If I go on Tamoxifen, I have to lower the dosage of Wellbutrin because it lessens the effect of Tamoxifen. I'm not willing to do it.

My oncologist said that bipolar can't kill me. Well, duh. I just don't want to deal with even more side effects - which I think are 10x worse - like neuropathy.

I'm sure he'll sell chemo as hard as possible on Thursday. He's been selling it hard since my treatment recommendation appointment. He already scheduled my echocardiogram - that takes balls. Haha. I canceled. The fact that he wants to make sure my heart is healthy enough for chemo says a lot about chemo.

Anyway, it's great, though, to have people get where I'm coming from. It's my choice, my life, and my death because it's my body. Thanks for the love and support. I'll need it when he sells it like a timeshare presentation.

Chinneymae

You are absolutely right, Globalgirly. My oncologist did not like my refusing Chemo but was adamant about the Arimidex. She as much as told me I would definitely have a recurrence if I didn't take it and it would be in my liver, kidneys, brain or bone and then there would be nothing anyone could do. I think she was trying to use the fear tactic on me.



Some oncologists' salaries are paid based on the amount of treatments they can sell. Not all but some and I don't believe all that do get paid that way would deliberately put you on chemo if they didn't believe themselves you needed it. I just think that's the way they are taught and the medical industry can't make any money on alternative medicine so they push the standard of care.



I have really seen some horror stories.

fredntan

idk girls.



i was higher stage than youll. I had no choice.. chemo was doable. i have no SE from it. yeah it was hardest thing i ever did.



have youll gotten second opinion? maybe seek out integrated oncologist

vballmom

Chinneymae - refusing chemo is certainly an option. My mom did and nearly 20 years later is still here. She did have a lumpectomy, radiation and Tamoxifen.  She also was not Her2 positive.  Every diagnosis is different and being triple positive there are many options for us.  Were you offered Herceptin?

Chinneymae

I wasn't offered Herceptin. My Her2nu was confusing. There was one area that was positive and the phish test was negative. (Whatever that means). I did take my first Arimidex pill last night, but I am really scared of the side effects. I just don't know I feel like I'm gambling with my life. I am 57 years old and I want to be here to see my grandchildren grow up.

chef127

Chinneymae,

The fish test is the definitive test for her2. Mine was also inconclusive and the fish test was negative for the her2. Why do they even bother with the first test?

My onco told me the arimidex was more important than the chemo. IT will prevent the estrogen from feeding the cancer cells, but at the same time depletes it in your body causing menopause symtoms times 10. Many women do not get severe symptoms and breerze through the tx. I hope it agrees with you.

xox..Maureen

Chinneymae

I don't know why they do the first test either. The first crazy side effect I have with this Arimidex and I am stopping it. I wonder if anyone has ever split the pill in half and tried it that way?

chef127

Splitting the teeny tiny powerful pill is something I would do, IF I was taking it. I did read it is not effective in a half dose???????????Better than nothing. No? Research that.

I take DIM, calcium citrate, and a chinese herb formula. Limit hormone fed animal products and cut the sugar. etc

abigail48

halving doses:  I think depends on your genetic makeup:  body type, weight:  I don't take anything my teeny celtic bones can't take one size fits all.  side effects are effects

pam_pete

This is my first post.  Had my lumpectomy and sentinal node on 7/10/13 and pathology report came back Stage 1, Grade 1.  Two maternal aunts and two maternal cousins also have had breast cancer.  My aunt was 62 when she had her mastectomy and no chemo and then it went into her bones.  She endured a lot of treatments (chemo and hormone) but lived to be 82 and died from a subdermal hematoma from a fall - not the cancer.  She said she wouldn't have done it any other way.  My other aunt was already in ill health and no treatment was done due to her advanced age and health at diagnosis.  She died at age 86.  Both of my cousins had mastectomy's and chemo.  My one cousin was  stage 2 grade 3 and tested negative for BRCA1/2  but for some unknown reason we have breast cancer in our family.  I just took the oconotype dx test and haven't received results.  If the score is low, then I will probably opt for radiation/hormone therapy and no chemo which my oncologist supports, but if range is intermediate or higher will do the chemo.  My one cousin is 14 years cancer free and my other cousin is four years cancer free.  This definitely is a very personal choice for all people and one that only they can make.  I was fortunate/unfortunate (depending on how you look at it) that I have had a lot of sources to go to with questions regarding cancer treatment and have seen how my family has lived through chemo and are having great lives (my son-in-law was diagnosed with stage 3b colon cancer at age 35 two years ago and did chemo) after chemo.  Personally, I have a lot to live for (husband, kids and grandkids), am otherwise healthy and I will do whatever I can to give me a better long-term prognosis.  But again, that is my personal decision.  Just make sure the decision you make is made on concrete information and not on heresay.  My cancer care staff has been awesome and support all decisions that I am making.  That is why we need to get second (or even third) opinions and take whatever tests are available to us to help in our decision making.  But ultimately it is your choice and no one can tell you that you are wrong.  I don't believe doctor's are taking kickbacks for their treatment, but as with all of us, many doctor's have their beliefs as to the best treatment and some just don't understand the choice we make and feel they should tell us.

chef127

pam pete,

sorry you have to make such a tough decision. Or maybe it's not so hard for you. I had to concider my current health and the conscience decison to compromise my health further by allowing the chemo to do its thing by killing stray cancer cells and my healthy cells at the same time. CRAP SHOOT.

I wish I felt I could survive the poison and hopefully avoid a recur or mets. I want a gaurentee. There is none. Too much damage for an insurance policy.

kICKBACK or commision call it what you will. I don't deny any business from profiting. 75%of an onco's salary is based on dispensing chemo drugs.

I wish you peace and good health......xox

Chinneymae

The decision you make has to be the one you feel in your gut is the best for you. My aunt had breast cancer in her 30s and she had a mx but no chemo or rads or meds. Died 32 years later of heart attack. My first cousin had double mx in her 40s took no chemo, rads or meds and died in her 70s from dementia. You can find these stories from both sides (with chemo/meds and w/o chemo/meds). Everyone is different and their circumstances are different (stage, grade, onco score, er/per, her2, BRACA 1/2, etc.). We have to trust our own instincts, listen to our doctors and take into consideration all the facts and do our own research and then make your own decision.



I sought out and spoke to as many people that have been there and done that, I also took into consideration my percentages if I take chemo and percentages if I don't. For me the percentage benefit did not outweigh the SEs of the Chemo, so I chose not to take it. Most importantly I prayed and I have peace of mind about my decision.

Chinneymae

Chef127: you are so right about the $$$$$. The medical industry DOES NOT WANT a cure for cancer. Just think about it. Where would all these pharma companies, hospitals, doctors, laboratories, research facilities, ACS, NCI, investors and politicians involved be if there were a cure. It would be a disaster for them.



They lead these women to believe that if they take Chemo that it will take care of any and all cells that MAY have escaped through their lymph system, when in fact there is no guarantee. Your whole immune system is destroyed on the chance that it might or might not kill all the cancer cells. And Chemo even causes other types of cancer.

TarheelMichelle

Chimmeymae, you are so right about chemo not being a guarantee. Of course, no treatment is, but chemo is still trotted out as the gold standard of treatment, and it's often not disclosed that chemo fails MOST of the time. It hurts me to see newly diagnosed women, Stage I, choosing double MX and chemo because they "just want to be done with it" so they "will never have to worry about cancer again." It's not that I want to criticize anyone's decision but that thinking IMO is flawed. I am glad I refused chemo, glad to have doctors who agree that chemo is the LAST option. I am happy to read posts from women who have not had recurrences in 10-20 years after chemo. But I see a lot of posts from women who endured chemo only a year or two ago, and the cancer returned ... and they are getting MORE chemo. !!!! Until chemo has a better success rate, it's not the right treatment for me. I pray for chemo's obsolescence.

maltomlin

There are no guarantees that chemo will eradicate all cancer cells, but we have to look at individual cases, and also what feels 'right' for us. For me, it felt right. Grade 3 with positive nodes. It wasn't pleasant but, hey, I'm still here & feeling fine. I must say though, that being ER/PR+ I have had more faith in that little Femara pill that I've been taking for the past 5 years and will continue taking for another 5 years.

We've all heard and know of people who have beaten the odds, and otherwise. My MIL died of heart failure at 86 after being dx with BC more than 50 years previous. No chemo for her. Just a mx (a butcher's job) and 3 weeks in the Radium Institute. But a friend of mine was dx with Her2+ and was terrified of chemo. She refused it (despite my protestations) and died 18 months later.

It depends on the dx...grade, etc etc. I'm sure that many with low grade cancers are being over treated and chemo is overkill for them.

TarheelMichelle

That is so true maltomlin. And I meant no disrespect to those whose cancers are so advanced that they may have no other treatment choice but chemo.

Chinneymae

You are right maltomlin. Had I had nodes involved I things would have been way different for me.

Alicethecat

Hello ladies (and any gentlemen)

I wish you all the best of luck with your decision.

In case it is helpful, why not have a look at Predict, which was developed by the University of Cambridge.

http://www.predict.nhs.uk/predict.shtml

Best wishes

Alice