No chemo for IDC?

idaho

Just talked with my onc. today.  I have about decided that the extra 2% survivor rate for 10 years is not worth the 6 months of sickness, no hair, and still a chance it will come  back.  Am I crazy?  And I dont' have $30,000 to take chemo either.  Any thoughts? I had a lumpectomy and I will do radiation, but I guess I think that  if it comes back then I still have the option of doing chemo then.. right?  I am 46 and premenopausal.   Tami

PT63

Hi Tami

It looks like your markers are about the same as mine.  I didn't have chemo either because my risk of an adverse reaction from chemo was higher than the projected benefit from chemo.  I did have an oncotype dx and it came back on the low side so that helped me make my decision.  do you have that option?  And yes, if it comes back you will have the option of chemo.

Good luck with your decisions - they are hard ones to make.

Tracey6

Hi,

I was dx Jan.8/09 had lumpectomy and currently going through 21 rad treatments. I decided not to do chemo after doing much research. I will be having ovarian ablation as well as I've decided against Tamoxifen.

idaho

Hi Tracey!  Thanx for responding.  Its nice to know I am not the only one that made that decision.  Please let me know how you do with the Ablation, I have thought I might do that also.  Tell me about your research if you have time sometime.  Thanx,  Tami  (How's the radiation going?)

Tracey6

Hi Idaho,

Radiation is very tiring, I have it done first thing in the morning so I come home and rest for a couple of hours, only 9 to go. The main reason I decided against chemo and for ovarian ablation is that for early stage breast cancer they cannot say that the side effect of chemo of shutting down the ovaries is the only real benifit that comes from it. I'm 41, so I decided to go with the ablation and go through menopause a little bit early. I did not like the sound of the side effects of Tamoxien, which sounded alot like menopause side effects with the increased risk of secondary cancers. The stats for reocurrence and mortality of just doing radiation and ablation are about the same as chemo and hormone, so I'm good with that. I've read stories of people who had similar dx as me with some taking chemo and some not, and it seems some have had reoccurence and some have not, so it's really a personal choice. My oncologist only recommended chemo as it was the standard of care in Canada, she was fine with me going with the radiation and ablation. There is alot of good info on this site as well as others, do the research and talk with your oncologist.

Good Luck and stay in touch. I'll keep you updated as my journey continues.

Tracey 

Anonymous

I chose not to do chemo for a variety of reasons.  I feel strongly that my best chance of living without a repeat of cancer is the hormonal treatment, and that would have been delayed for months had I chosen to do chemo.  I also know that doing adjuvant chemo is no guarantee, and I would not have done well emotionally if I'd done chemo, and had a return of cancer in spite of it.  For other people, the sense that they are throwing everything possible at the cancer in the first round is an important consideration. You need to know where you fall in that spectrum, and honor your sensibilities. No one else's choices matter when it comes to your decision, only yours.

I'm currently doing Tamoxifen, and at some point over the next 4 years, after I am fully in menopause, I expect to switch to an AI.  The Tamoxifen isn't bad.  Most of the SE's are things that I could expect as I transition into menopause anyway, and the less frequent, lighter periods have been a bonus, although that may be related to age as much as to the Tamoxifen. 

idaho

bump

idaho

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Jenniferz

As you can read on my signature, I didn't have chemo, or rads.  I DID have a mastectomy, however, and the onc. said that that was aggressive enough for the size tumors that I had. If I had been diagnosed today, especially since I'm her2+, I wonder if I would have received chemo.

As far as I know, nearly three years out, I am still in remission. I had my mammo on my remaining breast today, and will know the outcome in about a week.

Here's hoping for your continued good health.

Jennifer

vivre

Idaho, I am really surprised that your onc even recommended chemo. My tumor was a little larger than you and I also had clean nodes and margins and my onc told me it did not would be worth jeopardizing my immune system with chemo. I am wondering why your onc say otherwise? I did do rads, but wish I had skipped that too. After treatments, my onc said that my chance of recurrance was only 10% and arimidex would cut it to 5%. I opted out of arimidex too and decided to go on a weight loss, exercise, nutrition program that has made me feel healthier that I have in years. There are lots of choices. Research everything and go with your gut instincts. You will figure out what is best for you.

samiam40

Tami, please ask your dr about getting the Oncotype DX test.  It analyzes your tumor on a molecular leval and predicts your rate of recurrence and benefit from chemotherapy.  Many people have gotten low scores and have received reassurance that chemo was not necessary in their cases.  Others have been surprised by high scores, and have done the chemo because their oncotype score predicted that their benefit would be significantly higher than 2-3%.

Anonymous

Tami - I agree with Samiam40 - the oncotype DX test will give you the information you need to really assess your chemotherapy choice, and necessity if any.  Your age does factor into this as you are premenopausal. 

 As you can see on my signature, my stats aren't that different than yours and I am 44.  My oncotype score was 23.  Having clear nodes is wonderful, however it does not guarantee that one cancer cell did not escape thru your blood stream.

I had two opinions and both felt that with my age and oncotype I should do CMF (like samiam40) which has been very easy to tolerate.  If I were 55 and post menopause they may have recommended to skip it and take arimidex. But you and I are not.

Oncotyping is easy, my insurance paid for it and I will tell you that I am SO HAPPY that I have that extra information.  My benefit (with tamoxifen) is much more than 2-3%.

Get a second opinion if necessary and have the oncotyping.  It will give you the scientific information you need to assure you that you can skip the chemo, or look at chemo again.

What ever your decision, be strong and keep moving forward!  We are all so lucky that now we have more choices and tests like the oncotype DX are available to us to give us more information on our specific cases.  Your doctor knows YOUR case -our cases here are all breast cancer, but really only specific to us.

sandcrab64

Tami--Definitely request the Oncotype DX test, which will tell you the likelihood of recurrence.  If your chance of recurrence is low, then chemo is not worth it.  I was diagnosed in 2004 just before the Oncotype DX test was made available.  My doc said that the benefits of chemo did not outweigh the risks (ie. treatment related leukemia).  My bc profile is almost exactly like yours, and I did not do chemo.  I had a mastectomy which was more aggressive surgically speaking.  I also take Tamoxifen as my "insurance policy" against a recurrence.  I am 44 and 4 years out from dx.  Good luck to you!

amE2

Hi,

My name is PamW.  I was just dx'd with IDC.  Later stages as I have had it for a while but no health insurance.  I have insurance now.  I am not having Chemo either.  My cancer cells are Estrogen + and highly receptive to Estrogen Blocking medicine.  They may try Herceptin later but want to see the reaction to this first.  No surgery, maybe later.  We'll see.  I took my first Arimidex today and am feeling fine.  Maybe down the road a bit I will feel worse?  I don't know, I've never been here before.  I am 64  postmenopausal and it is a slow growing grade.  I think/feel that they have made good decisions for me. I am not unhappy.  Sometimes people look at me strangely because I am not unhappy.

I think because I am 64 I am not terrified and don't like it when other people get "frantic" about my life.  My relatives are fine, they understand thinking positive.  It's some of my so called freinds that are getting to me.  I am trying to stay away from those that are negative. I am also finding that people have a morbid interest in the stage.  I am saying to them, ask yourself "why" you need to have that information.  How do I keep positive thinking people around me?

Sigh,

PamW 

Anonymous

Hi Pam, quality of life is important, and it sounds like the path you have chosen should give you that, hopefully for a long time.  You might want to check out the alternative and complimentary forums, because no matter what stage you are, or what conventional treatments you do, eating a healthy balanced diet can help boost your immune system, and make you feel better in general.  That will help you acheive your goal of a good, long quality life. It sounds as though you've looked at a number of treatment options going forward, and have plans in place for a variety of contingencies. 

You can't totally eliminate negative people from your life...you can learn to laugh at some of the things they come up with, and some of the humorous threads on this site can help with that.

No matter how positive you try to be, and how much you surround yourself with positive thinking people, that darkness has a way of occasionally popping up with this disease.  It may help to have an ace in the hole like a prescription for xanax available to help you through those times.  It can help you hop over a dark hole that could otherwise trip you up.  We all have bad days...the trick is to keep them being occasional bad days and not let them grow into something bigger. 

Pat 

amE2

PatMom wrote: "That will help you acheive your goal of a good, long quality life."

 That is exactly what I am aiming for.  I have been told they probably won't cure me this way but

they can give me more time and a better quality.  It will all depend on how my cells react to the therapy.  He said he has several things in his bag of tricks to help me.  He made me feel good.  If they can reduce the tumors then maybe surgery.  That is fine with me.  These poor floppy things have fed two kids and they have done a good job, but, if they are going ot make me sick they can go.  :-)  Well, today was just the first day.  I have gotten one or two hot flashes and a gag reflex in my throat when I ate lunch but nothing I couldn't overcome.  I hope it doesn't get worse down the line.  Thanks for your comments.  Yes, I can see there is a lot of reasurance here.  I asked a question on active topics but never got an answer.  I want to be connected with people with the same problem.  This was helpful. I will use it in the dark times.  Yes, I do know they come and I usually cry and feel sorry for myself for 15 mins but that is enough.  It's just not my nature anymore to wallow, I am doing as my Doc says and looking forward.

Thanks again,

Pam

HY66

I too, am still deciding whether I should do chemo - when I entered my stats into adjuvantonline, it returns survival benefit about 2% but when I select stats for relapse, the benefit is about 6 to 7%. Am I right in the way I'm using the program? Can anyone share your experience with the program please? Unfortunately the Oncatype DX test is not available in Australia. Thanks.

Jamie6

HY66,

I just tried plugging in my numbers to adjuvant online, and I too got similar figures you got.

with chemo, survival benefit increases only by 0.9% (not even 1% difference) compared to no additional treatments.

However, as for recurrent risk, chemo reduced my reurrence risk is reduced by 6.1%. 

Ironically, using Tamoxifen alone, reduced my risk even more than chemo, ( 6.7% ).

Combined Tamox and chemo (CMF type), it reduced it by 10.6%.

Hope we're both using the tool properly - LOL

briles911

I was DX 11/04/08 IDC Stage 1  dont know Grade. ER+/PR+ size 1.8 I had a lumpectomy....margin and nodes were clean... I had an oncotype DX and mine came back with a score of 21. I am doing RAD 7 an 1/2 weeks of it. They said that it is a coin toss to see if I should have chemo. I am so unsure about it. I dont like the side affects just to gain a few points. But what scares me the most is.... What if a c cell broke loose. To me it shouldn't matter what area your in when it comes to the oncotype DX when it comes to the c cells that might have dropped. so that is where I am confussed. I hate the idea of destroying my immune sytem with chemo. So that is why I dont know what to do as far as chemo or not .... the tamx scares me too. I have changed my diet where all I eat is fish and fruits n veggeis and granis no aniaml by products at all. all organic.

Anonymous

One of the many things you need to take into consideration as you make decisions about adjuvant treatment is that Radiation is very effective as a local treatment, that is why it is virtually guaranteed to be recommended in conjunction with lumpectomy, but it is only effective in the local area in which it is given.

Tamoxifen, Aromatase Inhibitors and Chemotherapy are all systemic treatments, meaning that they are also effective against cancer cells that have traveled elsewhere in your body.  Tamoxifen and AI's are only effective if a tumor is hormone receptive because they work by blocking the tumor's access to hormones (Tamoxifen by taking the place of hormones on the receptors, and AI's by blocking hormone production).  Chemo works by attacking every fast growing cell in your body, including the ones that you want to keep in good shape.

Most of the Tamoxifen side effects are things that someone entering menopause can expect to experience to some degree or another.  It doesn't matter if you get there through natural menopause, chemopause, or tamoxifen.  Unlike the other ways of getting there, if you use Tamoxifen and find the side effects unbearable, they usually stop when you stop taking the pills.  It is definitely worth giving Tamoxifen a try.

Everything that we do to help ourselves, whether it involves cleaning up our diets, exercising more, losing weight, reducing stress, supporting our immune system, etc, all works together with whatever combination of conventional treatments we choose to give ourselves the best possible balance of protection from future cancer with minimal side effects on our quality of life.