Choose to have chemo?

Boy Lisa
That sure is a hard call and i can't even tell you exactly what i would do. I guess if the percentages were very low (say 2%) I may not. But if much higher i probably would do chemo just for prevention, i know it really sucks to go through it if it is not needed, but only you and your onc. can make this decision. I wish we had a crystal ball when we are making our decisions. I don't know what the onxotype score really means..sorry i have been no help.
But i will pray for you that you will know and make the right decision. Let us know what you decide. My best to you
Jackie

chemo?
I'm sorry that you don't have very clear answers and that leaves you with another decision to make. If you're at all like me, I was very tired of making life so many changing decisions! My thinking was similar to where you are except it was in regards to radiation so that made it much easier to consider. But I had decided right from the start that I would do everything reasonable to prevent a return. I don't ever want to say to myself, "I wish I would have". In the event of a recurrence, I would much rather be able to say "I did everything possible so there is nothing else I could have done".

Good luck with your decision. Maybe when you talk to the oncologist you will feel more certain about one or the other. I'm sure he/she will have a recommendation and that will help.

You're in my prayers!
Rita

Christmas Girl said:

A complicated & difficult decision...
Hi, Lisa. I'm truly hoping your oncologist may perhaps be able to provide you with some additional information that'll help to make your decision even a bit easier. My heart goes out to you. In comparison, my own decision was easy: after surgery = 60% chance of recurrence, within 3 years, without the chemo & radiation. Those treatments brought the risk down to 20%. Honestly, I would do just about anything (except murder or sell my soul, I think) to get that 20% even lower if I could. There's simply nothing else for me, at this point in time.

Chemo IS do-able. But, nobody every really wants it. Weigh your decision carefully. Whatever you decide, don't look back - no regrets. And, please remember that even chemo does not provide an outright guarantee against recurrence. Not for us, at least.

Honestly, it seems you're already leaning for it. I notice that you repeat twice in your post: "How can I choose NOT to have chemo?" Breathe deeply. Think with your mind, first - then with your heart. Good luck with your appointment tomorrow, and best wishes to you, whatever you decide.

Kind regards, Susan

I would do it
If it were me, I would do it. The doctors aren't going to be the ones to live with the regrets if it comes back: you are.

Ohilly

Tough call
Lisa, I can certainly understand where your husband is coming from: he doesn't want to see you suffer more than you already have, for what looks like a small benefit. And I know from reading about your experiences that he will continue to be a rock of support for you whatever may happen. But for what my advice is worth, I would go with Ohilly's advice. It sounds like you and your husband enjoy a very happy life; were I in your place I would do everything in my power to make sure this happy life went on and on.

You two will be in our thoughts and prayers regardless of what you decide.

Best,
Joe

my two cents
I hope you don't take this as criticism, but:

1.) it's not your husband's body. My husband also felt I should have a lumpectomy, not a mastectomy, but later we were both glad I did.
2.) statistics are only probabilities. For example, according to the Femara package, less than 5% of women on it experience hair thinning as a side effect, but I did.

My two cents: better safe than sorry.

Ohilly

tgf said:

my 2 cents
Lisa,

You didn't say what type of chemo your oncologist meant. I can only speak for what I am having ... and that is taxol and herceptin... and I can honestly say it has been a "breeze." I have had very few side effects and absolutely NO nausea. I did have a port put in ... and I am so glad I did. It makes it all so much easier ... since I am terrified of needles. I have had weekly infusions and this week will be #7... and I have continued to work full time throughout. I am lucky that the infusion center is not far from where I work and they have been able to schedule my appointments for late in the afternoon (Fridays)... so I only end up missing less than 2 hours of work.

I know some of the others have been on much stronger chemo and have experienced more side effects ... but I can only speak for my case.

Good luck.

hugs.
teena

Just chiming in. It is good
Just chiming in. It is good that the onco number for the one breast is low. Unfortunately you are right that the number on the other is in that grey area. I am in the study for those numbers so that in the future woman can have more information to make a better choice regarding chemo. My number was 21 so I was put in the study group. I am in the non chemo group. I had some misgivings when I got the number and my placement in that group. I thought what if I have a recurrence, spread, whatever. Then I decided that I would have, like you, had to make that decision regarding chemo based on my gut and not on any definitive info. I could drop out of the study and do chemo if I wanted but I decided that by staying in the study and being a lab rat I would be doing something important to help others. If it comes back then I have chemo in my arsenal. They will be keeping a close eye on me and I feel strongly about doing this. I honestly don't know what I would have chosen if I was not in the study and I had to pick which way to go. Mine was only slightly higher than yours but I think that I would probably have gone with the chemo. And keep in mind that although the other breast had a lower number you have had cancer in both breasts. That might weigh into your decision. I had lumpectomies on both breasts because the other one was suspicious for DCIS but on pathology it was determined to be atypical hyperplasia. I wouldn't have been in the study if I had cancer in both breasts. I know that was the reason that you couldn't participate. With the number of 16 you would have been in the study group and put into chemo or no chemo randomly like me.
GO with your heart and gut. If you choose chemo you will get through it and the folks here will be with you every step of the way. And if you choose not to do chemo, know that the percentages are on your side and that should this awful beast returns that others have had recurrences and they will be with you. I also appreciated your advice and your support of everyone and know that I will be here to support you with whatever decision you make. And that decision will be the right one for you.
Stef

Lisa, I know you are in a
Lisa, I know you are in a tough situation right now without any clear indication of which way to go, but at the same time ask your oncologist what your chances of recurrence are and if they were to give you only 4 doses of chemo, would that lower your chance of recurrence. I went through 8 rounds of CAF, but many here on this sight only had to do 4 rounds which were much more doable. Personally, I would do everything within my power to prevent recurrence, so see if your oncologist can be a little more specific in helping you make your choice. Prayers and hugs, Lili

Different opinion
Lisa, I have somewhat of a different take on this. For persons with a very low risk of recurrence, chemo does not do all that much to lower it. If your chances are 2% without chemo, how much will chemo lower them? For me, 2% would be an acceptable risk given the side effects of chemo. Yes, it is doable, but it is by no means without its own risks. You may be one of those who has no side effects, or only superficial ones. But there are others who have serious repercussions. All things to consider. I am just giving you my take. You may not be able to live with not doing chemo if it can lower your risk to say 1%, but I would want to know the approximate numbers first. What if it lowers your risk by a small fraction only? I don't know, I'm just posing the question. I didn't feel that I had a choice in doing chemo, and I'm certainly glad I did it. But doing all you can to fight breast cancer does not necessarily mean doing chemo if the improvement to your odds does not outweigh the risk of serious side effects. Good luck with your decision.

Mimi

Ltalcott said:

no chemo
Thanks Mimi, the reasoning you presented is what my husband was going with also, and that is what ending up making the decision. What a tough decision, but I have such a low chance of recurrence, and the chemo gives me little (or no!) benefit.

There is one study (349 patients) that showed the hormone-only group with similar scores and cancer characterstics to mine had 5 patients with recurrence, while the hormone + chemo group had 6 patients with recurrence--MORE recurrence with the chemo. It wasn't a statistically significant finding (that's important, I know, even though I don't know stats), so they don't throw out the chemo. (I maight have the actual numbers wrong, but that's the gist of it.)

And the long-term side effects of chemo--while small--are real. I'll kick myself if I have a recurrence down the road, but I'd also kick myself if I developed leukemia or had heart damage down the road--from the chemo that 'probably' didn't even help me.

Thanks to you all, the side of effects of chemo as you go through it was not a concern for me--I've heard from so many of you that it doesn't have to be that bad.

Now we're moving on to the hormone therapy--which will really make a difference.

Lisa

Good luck with your
Good luck with your decision!

Ltalcott said:

no chemo
Thanks Mimi, the reasoning you presented is what my husband was going with also, and that is what ending up making the decision. What a tough decision, but I have such a low chance of recurrence, and the chemo gives me little (or no!) benefit.

There is one study (349 patients) that showed the hormone-only group with similar scores and cancer characterstics to mine had 5 patients with recurrence, while the hormone + chemo group had 6 patients with recurrence--MORE recurrence with the chemo. It wasn't a statistically significant finding (that's important, I know, even though I don't know stats), so they don't throw out the chemo. (I maight have the actual numbers wrong, but that's the gist of it.)

And the long-term side effects of chemo--while small--are real. I'll kick myself if I have a recurrence down the road, but I'd also kick myself if I developed leukemia or had heart damage down the road--from the chemo that 'probably' didn't even help me.

Thanks to you all, the side of effects of chemo as you go through it was not a concern for me--I've heard from so many of you that it doesn't have to be that bad.

Now we're moving on to the hormone therapy--which will really make a difference.

Lisa

I agree with Mimi. If your
I agree with Mimi. If your chance of recurrence is 2% without chemo and we know that nothing brings it to zero, I am thinking that it is only going to change by a fraction. And there are some serious long term side effects you might have with chemo. It's such a coin toss. The hormone therapy is going to do a lot to kick this breast.
Stef