Choosing No Chemo

6407floridana

My diagnosis was IDC with a mass of 2.6cm and 3 positive nodes.  I have had a mastectomy and was told my cancer is a stage llB grade 3.  My oncologist recommended chemo as I had expected and most of the posts here at breastcancer.org talk about women doing chemo as the medical profession dictates.  I would like to hear from anyone who has a similar situation as mine in the past and chosen not to do chemo.  I am doing a massive amount of alternative and healthy protocols of my own and have a very positive attitude, but I would like to hear that others have done this and beat the cancer for a long time.   Please post responses....I need advise from someone other than those who follow the medical field's standard protocol.

anondenet

I had IDC twice in 15 years but refused chemo and rads. I refused to have the nodes checked since node dissection had crippled my friend the year before. And taking nodes has NO therapeutic value.

 Check the Amazon Email Discussion Group for those who have passed up chemo. What little value chemo has is for a small subset of younger women. One of the Amazons had your exact dx but she had ten nodes positive. She just celebrated 10 years survival after having a double mastectomy.

rubytuesday

In 1998, I had a 2.6cm invasive bc, node negative, ER+, PR+.  I chose surgery (segmental  mast) declined chemo and radiation (after a TON of research and soul-searching) and chose to do Tamoxifen.  I also do a wide variety of supplements.  Actually at 3 years out, my oncologist told me that I should be proud because I had beaten this cancer.......Fast forward to 2006, I had a new primary, same breast (actually 2 tumors) 1.6cm and 1.2cm tubular bc with micromets to the sentinel node.  At first my oncologist was throwing everything at it but I had already checked out tubular bc and told him it was a wimpy cancer.  His comeback was but it is invasive none the less. HIs PA suggested having the Oncotype DX run on it (this was before they knew the SN was positive) and the recurrence score came back VERY low.  I chose to have a mast w/reconstruction and I also chose to take Femara since it was ER+/PR+ again.  My oncologist agreed with my decisions this time.  I do not regret declining chemo or radiation the first time around.  I probably could have saved myself some anxiety if I had done the mast. the first time but I REALLY wasn't ready for it then. Do your homework and follow your heart.   Best wishes

gscott

I wish you all the best. You do indeed need to follow your heart!

jason222

Hi anom,

Can you point me to the amazon discussion group? Would like to get more information from the group too.

anondenet

Jason,

You can find the directions for the Amazon Discussion Group on this web page:

http://breastcancerchoices.org/amazon.html

Anom 

Little-G

I was dx with stage 1 ILC, no nodes.  I chose not to do the chemo or tamoxifen.  I know when you're dx all this comes at you so fast, and sometimes your choices are blurred.  No one here can tell you what you should do.  And we all have so many varying opinions.  The medical world is even changing their thoughts on the "one size fits all" theory.  I wish you the best with whichever way you choose and I wish you lots of strength.  You're not alone which ever route you go.

g

Piera

My dear,

we have the same problem. I had 2 operations in 6 months, the last 20 days ago. The first time I choose the hormontherapy and radiotherapy because my sentinel's nodes were clear and my bodyscan too. I always insisted I had another tumour because I suffered (and am suffering) so my onc discovered a lymph node involved (1/34).

I have no other choices this time: I am approaching Chemo but, unfortunately, I am intolerant versus many medicines, and only the last w.end I felt very unwell for side effects.

I am thinking about Chemo: my collaborator, in Italy, chose no Chemo after surgery, and she died in 3 years. My daughter too, in London, 15 years ago, had told from Doctors that Chemo for her could be very dangerous, so they decided for Radiotherapy only.

I live alone in Scotland, and my daughter said this morning she is thinking to leave her work in Florence for supporting my Chemo's period: I think my body will not tolerate Chemo but I have to demonstrate my daughter I want to live, like she did for her cancer.

The Chemo is the only hope for me, and for you too. I arranged a Consultation near the Homeopath Hospital, for remedies (side effects).

I can tell you what is better for your life: I know this one is a very hard time for us but up! Over the Chemo there will be light and stars for us!

Love, Piera (p.adamo@tin.it)

carmadi

My dear floridana:  I can truely understand your hesitance in beginning chemo.  I am a BC survivor since 2001, had mast and 6 months chemo followed by 30 days rad.  If I get a recurrance, I seriously doubt I'll go the chemo route again. I've read alot of good things about apricot seeds and cancer - I just ordered them and started taking them yesterday as a "maintenance".  An acquaintance of mine refused chemo after her dx and she ate 17 seeds daily along with a very strict diet change...her cancer is now in remission without the horrible chemo side effects.  Her oncol was very insistent on the chemo and Im sure he meant well, but when she told him she was going to order and try the seeds, he refused to take care of her.  She now has another oncol who encouraged her and is keeping close tracks on her progress.  I am not pushing this treatment, believe me, but it is worth looking into if your so set on foregoing chemo.  Good luck, and God bless you!!!!!

Bren-2007

Bumping

hotsyta

I have a friend who is pushing me to refuse chemo and try Essiac tea.  I just don't feel comfortable doing this.  I wish I could find information that would support this treatment, especially since I am 33 and I have "heard" that there is not a lot of data that demonstrates the effectiveness of chemo for younger patients.  I looked on the Amazon group and it was a huge site.  Not sure where to look.  So much information is out there and I feel so overwhelmed with it all.  Onco says "if it tastes bad don't do it, no compelling evidence shows effectiveness of alternative therapies"  Seems like a big gamble to me.  Does anyone have a comment?  Ta

SpunkyGirl

Ta,

Trudging through all this data and trying to come up with a solution that's right for you is HARD.  Unfortunately, the alternative therapies just don't have solid data to back their effectiveness.  With that being said, many women do choose alternative therapies and end up fine with it.  I can tell you that I have a bag of Essiac tea sitting on my desk that has been there for two years.  I just can't bring myself to try something that sounds good but doesn't have data to back it up.  I went the traditional route-six months of chemo, rads and am now on Tamoxifen.  I was almost 40 when I started this journey, and I am doing fine now.  Not everyone gets terrible side effects from chemo that never go away.  Chemo has a good track record because it kills fast growing (i.e. tumor cells).   But, do your homework and find out what you can live with.  Because ultimately, it is your decision (tell your friend, gently, to quit pushing).  I know what you're going through.  I am pre-menopausal, and I was strongly advised to get an oopherectomy.  I researched that issue and found that there was no evidence of additional benefit above everything else I've done.  I still often question my decision, but I think it was a good one.  Best of luck to you.

Hugs

Bobbie

LynnInCalif

Hotsyta    With your young age, the two positive nodes and grade II, it would seem chemo is right for you in my opinion. 

 This is entirely up to you, of course but, I wanted to say that it is important that you do everything you can to ensure there isn't a cancer cell left in your body.  And since it has hit the lymphatic system, there is reason to believe that the cancer has left the breast and is on the move.   

nixieschaos

Ta, You have got to know your body and act on what you feel is in it's best interests. I seriously considered not going the chemo route. I studied the alternative treatment sites like crazey. My family was scared for me NOT doing the chemo. So I compromised...What I ended up doing was a combination of alternative and chemo. I had about 1 month before chemo began to get my body strong and to begin fighting the cancer. (I am stage IV mets to the bone) I changed my diet. no dairy, no meat of any kind, no refined sugar, no white flour or rice,...basically a vegan diet. Organics only. Tons of dark green leafy vegetables. I began taking about 50 supplements per day (The AMAZON PROTOCOL by Nutranomics) then added coral calcium, cats claw, etc... AND ESSAIC TEA.

My body was so strong that the effects of the chemo were minimal. My doctors shake their heads. They call me a miracle. I have infiltrating Ductal Carcenoma. My breast was hard as a rock. Even after the lumpectomy. My docs said that a masectomy was inevetable. I was cocky and said, we'll see.  I didn't bother to tell them what I was doing. Their opinons were irrelevant to me. All docs say now that I do not need a masectomy. My radiologist is freaking out at how unorthodox this is, but he agrees. 

Check out the cancertutor.com. It will baffle you at first with all of the info, but go to your stage's info and go from there.

Go with your gut and don't let anyone mess with that instinct.

I wish you years of health...

Nixie

carol1949

Ruby,  Would you be willing to share which supplements you take?  Also, did you base them on your own research, or have you used professionals such as iradologist, or naturalpaths or anyone in the alternative realm, in helping to decide what your body needs?

 I have a friend who is 10 years cancer free who went totally holistic, however, she went to Cancer Treatment Center of America and initially they provided her with direction.  After that... she has used medical intuitives, iradology, etc.  She has used Reiki, counseling, sweat camps, talking stick circles, etc. But at the present she takes a Blue Green algae supplement, Bone up and just attends health retreats occasionally.  She is doing very well.

 I appreciate any information you are willing to provide. I am finishing chemo, which I did decide to do because I had + lymphs... however, in retrospect and going forward, I will go holistic post surgery.  I think the statistics seem to indicate that chemo is simply not doing "That"  much to help us. While they have eased the s/e's tremendously, there is the fear of what the heck am I doing to my body.  I am in a chat room and am so alarmed on all of the medications so many women are on post chemo. 

Thanks for whatever information you are willing to share.

Malady

I feel so wonderful having found other people who have decided against taking chemo.    It is so hard to find someone to support those of us who make this decision.

I  am 67 and had a 1.4 cm tumour removed one year ago.   Had clean margins and tested negative for lymph nodes.   Grade 2 (moderately differentiated)  Stage 1.  

SusanG

My diagnosis is at the bottom. My onc really pushed me to do chemo, because my oncotype score came back slap in the middle. 16% chance of recurrence, it said - if I did Tamoxifen. Well, I'm having a hysterectomy (and ovaries out)  because of endometriosis, so that has to be a little better than Tamoxifen alone. I'm also going to take aromatase inhibitors once that surgery is over. I'm a little leery of the no hormones thing, but I'm still researching that aspect.

 However, chemo was never an option for me, at least not at this stage. I did tons of research, and found no evidence that it helped women with tumors as small as mine, so I opted out. I just couldn't see putting myself through that along with five surgeries in six months, possibly six. I'm also looking into other dietary changes and supplements.

I am, however, doing a new study on bisphosphonates. These are the medications used to treat osteoperosis, and they seem to have some ability to prevent bone mets, and possibly liver mets. I do an IV infusion of Zometa (the drug I was randomized in the study to take) once every 28 days. So far, so good. If I remain on the study, I'll do this for three years, and hopefully prevent any mets! If your diagnosis is relatively recent, you could ask your onc about this study if you're interested.

Su

Katie2u

HI Susan:

   Thanks for the info on Zometa. Where is this trial going on?   I got diagnosed in late June of this year with DCIS, Grade 3 with comedo necrosis on my stereotactic biopsy.  I had surgery in late July and they found 1.1 cm of IDC, Grade 3, Stage 1, ER+ 100%, PR+ 5%, HER-2 negative, no lymph node or definite vascular invasion.  I was sitting on the fence as far as chemo so I had the OncoDx test done.  My score is 30  ugh, so I am proceeding with chemo starting next week.  I know the OncoDx test bases your chances of reoccurrence on genetic profiling..... so if genetic mutations are present will chemo or anything really make a difference and for how long? 

Sher

Hi Su,

 I just went yesterday for a second opinion and the oncologist referred me to the bisphosphonates study/trial.  Since my diagnosis (local recurrence) and subsequent bilateral masts I've been resisting recommendations for chemo.  NED right now, so have a real problem doing chemo for something that might be there.  That and the fact that they still can't give me any guarantees that the chemo will definitely prevent mets.  Have you had any trouble/SE's with Zometa?

healedn08

Hey guys,

I am new to this site, but want to join in. I am 38 years old, AA, and was diagnosed with IDC, 3cm, Stage 2, Grade 3, 0 nodes, ER+/PR+, HER2-. Had a lumpectomy a month a go. My oncotype recurrence score was 23 with a 15% chance of recurrance without chemo. My onc says I'm on the border as far as chemo is concerns and the decision is mine, however, he recommends 6 rounds of TC. I feel this is such a strong method to prevent recurrence. Not sure if I want to put my body through all of the SE's of chemo to increase my recurrence % by 5-10% and even that's not guaranteed. He also told me there was nothing I could do as far as my diet, exercising, or losing weight that would be helpful. My cancer doesn't have anything to do with these factors.  Any suggestions or opinions.

Christianne

Just throwing my take on things into the pot.

My oncotype score was 20, even being highly HER2positive, which translates to a 12% recurrence score.  My onc basically said that in my case the risks outweighed the benefits.  He still left the decision up to me--so I declined chemo.  Regarding the last post, I can't believe that healedn08's doctor said there's no benefit from diet, exercise, or losing weight.  Everything I have read totally disagrees with that.

As for me, I have been a lot more careful with my diet, have lost 13 pounds from walking the past 5 months, and have added Vitamin C and E supplements to my diet.  I've also been recommended a book called "Questioning Chemotherapy" by Ralph Moss.  I haven't bought it yet, but plan to.

carol1949

Dear healedn08,

It just ruffles my feathers when I hear people (even doctors) say there is nothing you can do regarding diet, etc.

Please check out Patrick Quillin (Dr. of nutrition) and former VP of Cancer Treatment Centers of America.  You can even Google his site and find out if his information is something you can relate to.

In my research, I have learned that there is an abundance of information and protocols that can be followed both with diet and supplements.

good luck

WooHoo

Looking for testimonies of women who have refused traditional treatment (chemo, radiation, drugs). I am in process of making decisions. I have no idea what my life will be like if I go that route. I've only heard stories from the 'other side'. I will appreciate input from those who have 'been there'. Thank you!

Katie2u

To Healedn08:

     I cannot believe that your doctor says that dieting and exercise don't make a difference.  I met with a dietician before treatment started and she emphasized the importance of diet and exercise.  She told me to avoid all red meat due to the "amines" they produce.  She told me never to cook meat at high temperatures.  You never want to see smoke coming from the pan or broiler and avoid meat or fish that is blackened. She advised cooking in Canola oil because it doesn't burn but tends to throw off a steam from the frying pan if temperatures are low to medium.  She stressed the importance of taking a fiber (psysillium powder) twice a day because estrogen binds to the fiber and is taken out of your body.  Also she recommended 2,000 to 4,000 IU's of Vitamin D3, Omega-3, Vitamin C, a good multivitamin/mineral supplement called Alive.   I have also started taking Wobenzyme (enzymatic therapy) which is given alongside conventional treatment in Germany, Milk Thistle to protect the liver and CoQ10.   She also recommended eating as many "raw" vegetables as possible, eating fresh fruit and staying away from all sugar (even those in bottled fruit juice), NO white flour, NO white rice.  It is important to exercise and sweat which releases estrogen (in those with ER+ cancer) and to keep up strength, little if any dairy and it must be hormone free, same with meats - hormone free organic.  She advised a half hour or so in the sun every day with half of body exposed if you live in a sunny climate.  If not, the Vitamin D3 should cover you with that requirement.  She said that 2/3 of all cancer patients are lacking in Vitamin D3.  Have your vitamin D level drawn by your doctor. You may also want to have your iodine level checked as I am hearing more about iodine deficiencies in cancer. There is a site online where you can order a kit, become part of a trial and they reimburse you for the iodine kit.  It is at www.breastcancerchoices.org.  It might be a good idea to have a holistic practitioner follow you in addition to your oncologist.  I haven't done that yet but will do so shortly.  I'm doing chemo... due for second round but not with joy...keep wanting to walk away from it but will probably continue for the next dose of poison.

Good luck!  

carol1949

Kaite,  Would you please tell me where you buy your Wobenzyme and about how much it costs?  That is one of the supplements that Patrick Quillin suggests in his book Beating Cancer With Nutrition.

Thanks in advance for the information.

althea

healedn08, my suggestion is to keep educating yourself!  First, I want to emphasize that most mainstream doctors appear to have little if any education in nutrition.  And even if they do, you would be wise to question where their information comes from.  The state of our food supply is appalling and scary, and it all has the stamp of approval from the FDA.  We may have some decent enough standards in the US regarding cleanliness and sanitation, but the nutritional value of our food is so depleted by processing that we are literally overweight and undernourished as a society. 

I'm not surprised at what the doctor told you. Perhaps it would be more pertinent for him to say there's nothing that he's learned from his training that would make him think diet, exercise or losing weight is beneficial.  If you're willing to change how you eat, you can do a lot to improve your health.  Also, chemo has a lot of devastating side effects.  Instant menopause, foggy brain, hair loss depending on which chemical is used.  Heart damage can result from chemo and radiation both. 

Everyone's decision is very personal and individual.  Listen to your instincts.  Ask questions.  For one, ask what are the hard number behind that 15%.  Who was in that group where they got those statitistics?  How many people were in the group?  What was the name of the study?  Not all doctors like to answer questions.  If he gets huffy with you, find another doctor.  You have choices.  Lots of them.  If you want them.  The downside of a lot of choices is getting through a mountain of information that isn't always going to make sense.  

cp418

Katie2u - Thank you very much for the details in your post.

Katie2u

HI Carol1949:

     I bought my Wobenzyme at the Vitamin Shoppe.  I believe you can order online as well.  It is made in Berlin, Germany and distributed here by muCos in Pittsburgh.  There is a web address on the bottle of enzymes.  It is www.wobenzyme-usa.com.   I am going to list below the holistic approach that a contact of mine is doing on a daily basis.  She did start out by taking a month of Cecium Therapy since she refused chemo and had a positive lymph node which was removed during surgery.  I don't know much about Cecium and not sure where you would get that but you could probably google it for more information.  A relative of hers who had liver cancer and was given 3 months to live according to conventional medicine is alive and doing well 3 years later after the Cecium and by following a strict diet and the supplements below.   The natural holistic approach she maintaines after breast cancer is the following:

Coral Calcium (Barefoot Brand), 1 cap 3 x daily to balance the bodies ph.

Symbiotics New Life bovine colostrum, 2 caps 2 times daily to boost the immune system.

Ip6 Cell Forte, 2 caps 2x daily to boost the immune system (Enzymatic brand)

Alive, a multivitamin made by Natures Way, 1 tablet 3x day (with food)

MSM 1000 mg, 3 caps, 3x day (for inflammation and pain)

Wobenzyme, 3 tablet, 3x day (enzyme which helps absorb nutrients and cleans the blood)

 Milk Thistle (solar ray brand), 1 capsule 2x daily to help flush out the liver.

Coenzyme Q10 50 mg capsules, 1 cap 2 x day.

Selenium Caps, 1 cap 3x day (solar ray brand)   Helps fight cancer

Vitamin D, 2,000 IU's, 1 cap 3x day

Solaray Calcium, Magnesium, Zinc, 1 cap 2x day

Vitamin C 1,000 mg caps (preferably Ester C caps), 1 capsule 3 x day.

Multidophilus (Solaray) 1 cap 2 x day.  Keep in refrigerator. 

These things can be put into a shake.  Use Distilled or Purified water only and absolutely no soda.   This is just information on what one person is doing and thought I would share it in case anyone might benefit.  We have to fight the fight together and we have all been through so much.

Love to all,

Katie2u

carol1949

Katie2u, 

Thank You very much for your generosity is sharing this information.  This is what this is all about is sharing and caring about one another.

healedn08

Thank you ladies so much for all of your advice. I have done a lot of research and that's why I posed the question to my doctor about diet, exercise, and losing weight. I have began changing my diet by not eating red meat, BBQ'd or smoked meat, started working out, and eating my fruits and vegetables more, which I never did. My vitamin D3 was actually low and I was put on 8,000 i.u per day. That has now jumped 10 points in 3 weeks. I am also taking CoQ10, a daily vitamin, green tea extract, EPA max for Omega 3, my Vit D3 (4,000 iu), and melatonin. This was all recommended by the treatment center this same doctor is at. Go figure!! I am going to look into some of the other alternatives recommended. Anyway, I have prayed on this and the Lord revealed to me that he has control over this and to do what makes sense. After all the research I have done, nothing made sense to me about putting more deadly chemicals in my body. I pray and wish the best for all of my BC sisters.

Much love to you all,

Lisa

Katie2u

Healedin08: 

 I wrote you a private message.... check your mail.  Did you have the OncoDX test done?

Katie