Opting out of Chemo

Moonpie39

Hello. This is my first time creating a topic. I'd like to connect with women who are currently considering or have already recently decided about chemo. My Oncotype score is 21 and, after a ton of research and talking to everyone I can find, I am fairly certain I won't do chemo. I have to make my final decision in a few days. My oncologist told me I receive the award for the most informed patient he's ever had on a first visit. That could be a good thing or a bad thing...sometimes I think I have done too much research and scared myself out of chemo due to the potential risks and side effects.

However, i have an incredible resource to help with me nutrition and supplements. My breast surgeon put me in touch with guy who has a phD in molecular biology from John's Hopkin who is a cancer researcher at UVa. His wife had breast cancer 13 years ago and since then they have dedicated their lives to helping other people with cancer.

I was never in alternative medicine before all this, but I cannnot help but trust what he says given his education and background. Also, his wife who was stage III is now 13 years out and has not had a recurrence.

If anyone would like to connect with me just to chat about chemo, what it's like to have a mastectomy with immediate reconstruction, etc. I would love to hear from you.

Best to all.

Kristie

msphil

I am a 18 this yr 19 yr Survivor, with no recurrence(Praise GOD), and I had L mast, with reconstruction(but my body rejected it and it hardend and was removed) I now wear a prothesis that goes into a poket in my bras, and I had(idc, stage2 3 nodes involved, L mast, chemo and rads and 5 yr on Tamoxifen for no recurrence, I too help by stayin here to help others like you and I crochet hats, for when hair comes out, and I write pamphlets every year to leave in oncology suites,I wrote a book, The Healings Of Breast Cancer:A Physical And Spiritual Healing Of My Body And Soul. its on Amazon.com and Barnes and Noble.com, at publisher:Xlibris.com, and donations from sales of book go to American Cancer Society.All while making wedding plans to my wonderful husband, we talked it over and he said to do what would give me the longest possible time, I chose chemo and radiation and ALL that would give me longevity. God Bless. msphil   

pupmom

It's hard to reply because you have not posted your stats. But, my Oncotype score was 14, and even with 2+ nodes the docs said no chemo. I said, YES! However, if I had had an intermediate or high score I would not have hesitated for a minute to get chemo. Just saying.

maryah930

My Oncotype was 21, no node involvement and I had a BMX with all margins Negative (>10mm) on both the DCIS, which was adjacent to and within the IDC and the IDC.  I chose chemo.  To me, I looked at the 4 rounds of chemo as a safety net and the SEs as an inconvenience. I have one more round to go and, knowing what I know and going through it, I would not have changed any of my decisions. 

There is no right or wrong decision.  Only you can decide for yourself. What will make you feel comfortable?

ruthbru

What is your stage and grade? There are valid reasons for NOT doing chemo, and valid reasons FOR doing it. And remember, chemo is not the enemy....cancer is. Nutrition and supplements are be great for improving overall health, and may lessen the chance of recurrence, but they will not kill cancer cells if have already escaped into one's system. 

1Athena1

Moonpie39, in addition to more information about you cancer, it would also be helpful to know what treatments you ARE considering.

We can't give you a medical opinion or advice - nor would we have the temerity to tell you what to do with your own body.

However, if you have any lingering doubts (and I wonder if that is why you post?) it my be helpful if we know what those, and you cancer characteristics, are so that we can give you more targeted feedback. If the cancer is inoperable, for example, that would be a valuable source of info.

Do you have additional disorders you are concerned about? I refused chemo partly because I didn't believe in the science of it for operable, early stage large organ cancers. But there are other reasons to refuse -- or accept -- it.

Anonymous

There is no such thing as too much research.  Generally the more you learn about something, the more comfortable you become about it. 

For me, the opposite was true about chemo.  The more I learned about chemo, the more concerned I became about subjecting my body to it.  Because I had pre-existing conditions that already made me vulnerable to cardiac damage and peripheral neuropathy, my chances of developing permanent damage due to chemo were at least as great as the possibility of gaining any benefit from it. 

Not doing chemo was definitely the right choice for me, and you need to make the choice that is right for you, no matter if that is different from what is right for anyone else.

jabal

Hi, I read an old post you made.  You were node positive and low onco score so did not do chemo.  I had an 18 score and sentinal node positive and dr says no chemo.  Did you do radiation and HT?  I would love to hear about your story and your treatment?

Thanks

Jill

Moonpie39

Thanks for all the posts. I found them to be very helpful. I was set up for my first chemo infusion today, but after meeting with my oncologist yesterday it was cancelled. It's a strange feeling to be 'done' for now after expecting both radiation and chemo from the beginning. Just have to keep telling myself that they removed the cancer, my nodes were clear, and there's an 80% chance it won't come back!!!!

Moonpie39

Msphil,

Sorry to hear about the failed reconstruction, but glad to hear you are well and paying it forward. After all this is over I would very much like to change careers and have a position in which I could help others through this process.

Plimsolls

Hello,

I was told I would probably need chemo after mastectomy and it wasn't really offered as a choice, though of course I could decline at any time.  I had IDC grade 3 multi-focal tumours (largest 2.8cm) 0/10 nodes.  I had 5 out of 6 chemo cycles and with lots of drugs went through it pretty well although  I had many complications (allergies to anti-emetics, DVT from picc line mismanagement and disappearing toenails, not to mention neutropenia), now still not sure it was right.  One weird thing, my hair grew back thick shiny and curly.  My sister in law refused chemo and had to have more surgeries instead and it broke up her marriage.  I think there are as many stories as there are women, but in a way I respect my sister in law for standing up for herself, even though I would not have made the same decisions.

Dwihtd

Moo npie

Where do u live. I would be interested in connecting with the man you were told to see. I have been very lucky so far with feeling good after chemo until I had to get a shot of leukine to boost my WBC . So sick , I feel like packing it in and trying to live life as it was. Probably impossible . Now I am on cipro because a side effect could be a low grade fever. Well guess who got that plus the shakes, tingly fingers , nausea and sweating. I had to get hydrated this morning. On tues I will find out what they will do next. Too many drugs!

Moonpie39

Dwhitd,

I sent you a  private message.

Moonpie39

Dear Plim,

Thanks for posting.  What color was your hair before chemo? How are you feeling now?

Momine

Moonpie, I too would be grateful for the nameof the UVA doc you have been referred to.

edwards750

Tough decision Moonpie but one only you can make and when you do, dont second guess yourself or look back or you will drive yourself crazy. All of us have been inundated with information to the point we can make arguments for and against a specific treatment. For me I was dx with IDC. I relied on the advice of friends who had been through BC and treatments. They were godsends as was this forum. Still the ultimate decision is yours. I had the oncotype test done too. My score was 11. I had a micromet in the SN. My ONC said 31 rads treatments; no chemo. I am glad I didnt have to make the decision to have chemo or not because lets get real who wants to have chemo. My son said he was going to shave his head if I did have chemo. Bless his sweet heart he took the news of my BC very hard. I put on my game face and didnt cave until I talked to my BS's office when the Oncotype test results came in. You could probably ask several Onc and get different opinions about treatment. I will tell you my ONC said they were relieved there is an oncotype test because women have been overtreated for years and subjected to costly and uncomfortable treatments like chemo. Go with your gut feeling and again there is no wrong decision for you because it is your life and your decision. Diane

Moonpie39

Thanks for the post, Diane!

mreginab

moonpie39.  what did your MO recommend with oncotype score of 21?  are you stage 1 and what size was your tumor.   i am 59 years old, tage 1, idc, tumor 1.5cm.  i am waiting for oncotype result, MO perdictsit will be 19 or 20.   looking for guidence on how to make decision on chemo.    please help.  and anyone please share experience with oncotype score and chemo decision.  thanks

Loral

I'm 51 years old, stage 1, tumor was 1.7cm,  my oncotype score is 34. MO said 23% chance of mets to liver or bone, chemo would make it 11% chance. I did not choose chemo or radiation. I'm taking tamoxifen after having a clean margin lumpectomy, nodes cancer free... I hope all goes well, if not and it reoccurs I will have rads and chemo as a choice then. Brca1/Brca2 negative. ER+.

judiblue

I had stage 1, going next month for my 6 month mammo. I had an onco of 22 and chose no chemo. I was told by my ro it is only a 3-9 % difference so I said no thank you. I was told make my decision based on waking up at 3:00 in the morning and worrying about the wrong decision.

maltomlin

Hi

You're lucky in the US, we don't have the onco choice here in the UK, we have to go off the dx. I'm not sure it helps or not.

All I know is that after my dx my treatment changed to chemo (that was a shock) and I was devastated. But the mind imagines things worse than they actually are. It wasn't pleasant but was 'ok'. Shortly after, a close friend was dx but declined any chemo and just had surgery. She died.

Chemo is not the only answer, I'm sure, but its the best that's offered. Alternative treatment has its place but only in conjunction with the tried and tested treatments.

heybella

Mreginab- you sound like me! I'm 52 with a 1.5 cm tumour and no nodes. I've been waiting for my oncotype score since mid- December  (the first request was never processed and then the holidays etc.) I'm very anxious to see what my score will be and what will be the course of treatment. (I'm BRCA 1 )- not sure if that will affect the score. 

 My oncologist asked what my feelings were toward chemo but in the absence of any evidence it was hard for me to say. I'm really dreading ending up in that intermediate 18-22 gray area.

 Pls. keep us posted as to what happens

Angi1111

I had surgery jan 16 th and have been going to get expander filled.  I have been trying to research all i can because I am considering not doing chemo.  I meet with oncologist this week to find out his reccommendations.  I have found out about mammoprinting and am going to seek that out as well as trying to change diet, going macrobiotic or vegan as best i can...and seeing what a Naturopathic dr. would do..i have heard about getting Vit C shots..etc...I would be interesting in Dr. name too.  It is hard to make a decision because i know people that did and did not do chemo.  Some did well with it, some did not, and some are doing well that didn't do it, and then some are that did.  the mammoprint is supposed to be able to help more with "will the chemo help my kind of cancer". I hope this helps.  

bhlri

I don't know if you have the blood test that detects CTCs available for you? I was part of the trial and it is one more way to know if you need chemo or not. It still isn't standardized but will tell you if there are any CTCs in blood. Even if there is one CTC you can get chemo.

LeslieJor

Hello, My Sister has been diagnosed with Stage III Breast Cancer and is set to begin chemotherapy after having a lumpectomy to remove two fairly large size lumps and they removed seven lymph nodes .. one of which was cancerous. She is being prescribed four treatments of TC (taxotere Cylclophosamide) and then a mastectomy and then radiation. Because they discovered cancer in one of the lymph nodes they want to begin chemo right away... (because of a long span of time that has passed because they were testing to see whether the cancer had spread to her bone) In any case, based on what we're reading about the serious, serious effects of taxotere, we're very concerned about whether it's the right course of treatment for her. We would love to hear more about your experience... whether it's helpful for her to hear and know before making this decision.

ruthbru

Leslie, some people have serious SEs from chemo, but most do not.....at Stage III, your sister's biggest threat is not chemo; it is the cancer, which is big and has already spread to her lymph node, I am afraid that she really, truly does need the big guns which chemo brings to have the best chance to beat this thing.

mary88

hello, i am just new here, i just would like to know what happened when you opt out for chemo and tried the alternative medicine.

thanks and God bless!

aluklan

Hi,

I was diagnosed with IDC had a tumor in left breast ER PR negative. Had surgery the tram flap reconstruction they took three lymph nodes and did the dye at time of surgery two months ago. They were clear nothing showed up in the surgery or the scans I have had prior to surgery. I’m not a big fan of chemo or radiation and told my surgeon this even before surgery as well as after. Now they are pressuring me telling me it’s a very aggressive cancer that one cell could slip through and take over. I did a lot of holistic remedies before surgery and now have started my regimen again. I asked why the treatment her answer was just in case. That seems like a lot to go through just in case. I see most people on here have gone through both. I’m more nervous about the treatments than I was about the cancer. I’m 64 in relatively good shape...high blood pressure and some back problems other than that fine. Can you tell me your story....I applaud you for your decision.i think the more informed we are the better...they wanted me to start chemo before surgery I said why on earth would I go into a big surgery like this with a compromised immune system? Surgeon said it may shrink the tumor and make my job easier....I said well that’s too bad because I want The surgery first then once you are in there you will know what you are up against. You need to be informed that’s for sure