Chemo or no chemo? - help

4slurpee

Hello, first time on the boards here but I am confused. Here are the basics after meeting with the oncologist today.

I have invasive ductal carcinoma (already had lumpectomy), did not spread to the lymph nodes, ER+, PR+, HER2-, Grade 1-2 (told 2 initially), Oncotype score of 21 (intermediate), 8 mm tumor, and I am 42.

I am concerned more from the Onco and the age than anything else. The decision has been left up to me. Fuzzy number here but I believe I have a 10% chance with just hormone therapy (tamoxifine - sp?) and a 5% change with chemo. for recurrence in the next ten years. I am afraid if it comes back I will blame myself for not having chemo. Then again, why put myself through chemo? The doctor seemed to excuse the Onco. test because everything else was decent. However, they were really pushing for the Onco test for me to even get into the appointment! I am confused. Any opinions, anyone been through this? I know I have to make my own decision, but discussion would be greatly appreciated. Oh . . . it would be 4 treatments three weeks apart - Taxitere and Cycotan. Thanks!

Eil4186

We have a lot in common.
Hi, I can understand your concerns. I was also 42 at diagnosis, and also er/pr+, her2-, grade 1 with a 1.5cm tumor. Our cancers have a lot in common. I had 4 rounds of Adriamycin/cytoxan and 4 rounds of taxol, rads and am taking tamoxifen. I think my chance of recurrence with all that is about 10%. Which I feel is pretty good. I understand what you mean when you say you would regret not having chemo if something happened down the road. My hubby was against chemo and I felt as you do----I didn't want to have any regrets later on. The way I see it, why not do everything possible to prevent having to ever go through this mess again?

Good luck, and go with your heart and what your gut tells you. Keep us posted. Eileen

taleena

Eil4186 said:

We have a lot in common.
Hi, I can understand your concerns. I was also 42 at diagnosis, and also er/pr+, her2-, grade 1 with a 1.5cm tumor. Our cancers have a lot in common. I had 4 rounds of Adriamycin/cytoxan and 4 rounds of taxol, rads and am taking tamoxifen. I think my chance of recurrence with all that is about 10%. Which I feel is pretty good. I understand what you mean when you say you would regret not having chemo if something happened down the road. My hubby was against chemo and I felt as you do----I didn't want to have any regrets later on. The way I see it, why not do everything possible to prevent having to ever go through this mess again?

Good luck, and go with your heart and what your gut tells you. Keep us posted. Eileen

Have the two of you been
Have the two of you been reading my path reports..??? We have a running script here... ER+ PR+ HER2- tumor 1.0 cm... total grey area... now waiting on the oncotype DX test results to either solidify the chemo decision, refute it... or decide for myself... If it comes down to the middle area...then I too will be having the chemo... I need to do everything I can to never hear those three words again, or my name in the same sentence as that beast!

Good luck with whatever decision you feel is right for you.. please keep us posted..

Hugs

~T

Akiss4me

OK, keeping the story line going!!
stats:
IDC
47 years old
ER/PR positive
Her2nue negative
nuclear grade 2-3 (slightly more 3)
1.9 cm tumor size
had lumpectomy
OncotypeDx score...less than a (1)

I find out tommorrow what my definite treatment will be from Oncologist. If she leaves it up to me.....no regrets, I want the chemo
If she feels strongely I don't need it, I will trust her expertise.
I'm curious because I have all the indications for the chemo, but no one has ever gotten the score I did on the OncotypeDX test. I was a first. In the back of my mind, I hope that they don't tell me no chemo to keep me in the clinical trial so I can be watched. I may just tell her in the beginning that I am opting out of the trial so they do not use that as a basis. Then after she tells me what I know will be the truth, I will tell her I changed my mind, that I will stay in it. Pammy

inquiring

Hello, I am also new to this
Hello, I am also new to this process. My diagnosis is quite similar to yours. I also have invasive ductal carcinoma but mine spread to one lymph node, or so they think. Anyways, I did not seem to have a choice with chemotherapy or radiation. Radiation was always recommended and a board reviewed my case and then Chemotherapy was recommended along with Tamoxofin.
I started my first Chemotherapy treatment about three weeks ago and have three more to go.

I would recommend having another oncologist review your case. I do not think any decision should be made with such uncertainty. You may feel more comfortable talking to others. I spoke to a surgeon who also was diagnosed with cancer and she ended up getting three doctor's recommendations in total.

Ultimately you know yourself and you need to live with your decision.

Good luck with this process and know that you are not alone.

susie09

I wish you good luck with
I wish you good luck with your decision. Your tumor is small. Chemo is usually for tumors that are 2 cm and larger. And, your nodes are clean. But, the decision is always yours.

mimivac

so hard to decide
Well, the good news is that your stats are good and your tumor is small. But I know that making a decision is difficult. We don't know what the future holds, but we can only make the best decision with the information we have today. I think that the advantage that chemo gives you (50% reduction in risk) is significant. On the other hand, chemo is not without side effects and you have a very small tumor that is not very aggressive. Another thing to consider is age, as you said. You have many more years ahead of you to avoid recurrence and your body can take difficult treatments. Please get another opinion (or two) before you decide for sure. Good luck.

Mimi

Piggies

Oncotype DX
Today, July 7, 2009 is my one year anniversary of my breast cancer diagnosis. I was fortunate, it was caught very early, Stage 1, lumpectomy only and six weeks radiation. My Oncotype DX Score was an 11, which is considered good (low chance of recurrence). My breast surgeon, medical oncologist, gynecologist and radiation oncologist all agreed that chemo was not needed as there would be no added benefit to having it. I chose to listen to the doctors and did not have chemo. Over the past year, I often wondered if perhaps maybe I should have had it anyway as I worry about recurrence. It all comes back to the fact that deep down inside I realize I made the right choice. I've had several mammograms since I finished radiation in October 2008 and everything is good. I'm due for another one next week. I have to believe that I made the right choice. I wish you well on your journey.

susie09

Piggies said:

Oncotype DX
Today, July 7, 2009 is my one year anniversary of my breast cancer diagnosis. I was fortunate, it was caught very early, Stage 1, lumpectomy only and six weeks radiation. My Oncotype DX Score was an 11, which is considered good (low chance of recurrence). My breast surgeon, medical oncologist, gynecologist and radiation oncologist all agreed that chemo was not needed as there would be no added benefit to having it. I chose to listen to the doctors and did not have chemo. Over the past year, I often wondered if perhaps maybe I should have had it anyway as I worry about recurrence. It all comes back to the fact that deep down inside I realize I made the right choice. I've had several mammograms since I finished radiation in October 2008 and everything is good. I'm due for another one next week. I have to believe that I made the right choice. I wish you well on your journey.

Why does everyone go by the
Why does everyone go by the Oncotype DX test to see if they need chemo or not? Why don't you take into consideration the size of your tumor and the grade it is? Just curious. It seems like so many don't get the treatments that they would otherwise, based on that one test.

Terri5

I wasn't given the option of
I wasn't given the option of whether to have chemo or not, just on which chemo to use. Whether you choose chemo or not, the recurrance will always be in the back of your mind. I bet every one out there who has had cancer and went through treatment, no matter what they chose, there is always that worry deep down inside. Talk with your oncologist, make sure he or she answers your concerns and then try to make the best decision for yourself.
G!ood Luck

fauxma

susie09 said:

Why does everyone go by the
Why does everyone go by the Oncotype DX test to see if they need chemo or not? Why don't you take into consideration the size of your tumor and the grade it is? Just curious. It seems like so many don't get the treatments that they would otherwise, based on that one test.

Everyone isn't going by the
Everyone isn't going by the Oncotype DX test to see if they need chemo. Most of us that are using this test to help decide have small tumors, no node involvement, and low grade. This test can help to determine recurrence. I don't think that anyone is using this test alone to determine chemo. It's just another tool in determining treatment. I had a 1 cm tumor, no node involvement, grade 1 & 2. My score was 22. This is in the midde. I chose to do the study and was randomized for no chemo. I am fine with this, but if I had been randomized for chemo I would have been fine with that. If my number had been low, then I would not have had chemo and if it had been high I would have. I just happened to be in that murky middle ground. Size of tumor, node involvement and grade is probably the most important indicators for chemo. I think everyone with a large tumor or that had cancer in their nodes or a higher grade did chemo. Stage 2 and above usually always do chemo. Most of us onco test people are stage 1. Am I correct ladies or talking through my hat?
Stef

debragood1

To Chemo or Not to Chemo
Hi. I was in a very similar situation. IDC, no node involvement, ER+, PR+, Her2-, 1.2 cm tumor. Oncotype score of 18. I'm 48. Had bilateral mastectomy in April. Decided with my oncologist to go with chemo: CMF. I've now had 3 out of 8 treatments (dose dense/every 2 weeks). Will start tamoxifen after chemo treatments. I certainly don't recommend chemo but mine is pretty tolerable. The bottom line for me was that if I did have a recurrence and had chosen not to do chemo, I'd feel like a dope not having done everything I could have to prevent it. It also seems that at this time, chemo is better at treating early cancers and preventing recurrences than it is with metastatic cancer.

Good luck with whatever you decide.

piseminger

No choice
I wasn't given a choice either.
I had 16 rounds of chemo and 33 days of radiation.
My cancer had spread to 4 of my lymph nodes, was 3cm in size and estrogen positive.

on the other hand my mother is a 27 year survivor of breast cancer.
she lost both breast - cancer may have been in one node.
No other info available
she had no chemo and no radiation (the chemo dr wanted her to have chemo but she opted not to)

Now I have to decide about whether or not to go on Femera.

I am with everyone else. The decision is ultimately yours and you have to live with that decision come what may. It is definitely not an easy decision after all we are talking about our lives. Even with different drs opinions you are still the one that has to live with the final decision.

The comment once made to me was "wouldn't you want to do whatever you can to increase your odds of keeping the cancer from coming back." Much to think about.

I wish you a peace of mind in whatever decision you make. God Bless

MAJW

Chemo or not.......
I have just had my second chemo infusion.......I have invasive ductual carcinoma, with NO LYMPH node involvement........Had lumpectomy on May 20.......For me the chemo hasn't been anything like I expected.....absolutely NO nausea......just a tired feeling and even that's not so bad, yet but expect with each of my last two for it to increase, as I have been told. I am not a candidate for Tamoxifen nor Herceptin......chemo for me was a no brainer.....when the oncologist told me the odds of a recurrence without it.....I would jump off a bridge if they told me that would lower the odds of it coming back in my breast or anywhere else in my body in the next 10 years....I guess jumping off a bridge would solve that though.... But seriously, the decision is ultimately yours.....They have come so far with anti-nausea drugs during chemo....I start them at home the day before, also.........then for the first 30 minutes I am pumped full of them along with benadryl and then they wait 15 minutes for them to take affect before the "big guns" get going......My infusions consist of Taxotere and Cytoxan.....it takes about 3 hours total from the time I am in the chair until finished....

I wish you well in making your decision

dmc_emmy

I was not given an option, but I always have choices...
Without chemo, but with hormonal drug therapy, I have a 27% chance of surviving without cancer. With chemo, I increased my chances to 40% (according to my prognosis), as long as I continued my hormonal therapy. With only chemo and no hormonal therapy, I have only a 17% chance of living without chemo.

These are my stats, they are personal and unique to my illness; just as your dx is unique to you. What works for me, physically and emotionally, is also unique to me and may not be the best choice for you. If we were all the same, maybe the researchers would have found a cure by now. But, unfortunately, they have not found a cure and, as unfair as it may seem, we are individually responsible for making perhaps the hardest and most fightening decision of our lives.

Though I was given no other option except to undergo chemo and radiation, I could have stopped it at any time. I chose not to stop, I have a daughter who needed me.

As for me, it is true for also for you: you cannot stop something that you never began. If you, or anyone, chooses to chemo, radiation, hormonal therapy, other drugs, homeopathy,...whatever-it's your choice and no one will fault you for your decision. However, should you not try something, you will never know if you have done all you could have done to beat the stats. You will never have the opportunity to stop (pull that "trump card" as Vickie Girard says in her book "There's no Place like Hope") if you don't start.

You have been dealt the cards, my friend, but it is only you who can decide which ones to play. It's up to you, but we will be with you every step of the way--that's why we have each other.
dmc

Christmas Girl

debragood1 said:

To Chemo or Not to Chemo
Hi. I was in a very similar situation. IDC, no node involvement, ER+, PR+, Her2-, 1.2 cm tumor. Oncotype score of 18. I'm 48. Had bilateral mastectomy in April. Decided with my oncologist to go with chemo: CMF. I've now had 3 out of 8 treatments (dose dense/every 2 weeks). Will start tamoxifen after chemo treatments. I certainly don't recommend chemo but mine is pretty tolerable. The bottom line for me was that if I did have a recurrence and had chosen not to do chemo, I'd feel like a dope not having done everything I could have to prevent it. It also seems that at this time, chemo is better at treating early cancers and preventing recurrences than it is with metastatic cancer.

Good luck with whatever you decide.

Welcome, debragood1
Glad you found us - we're all here to support and encourage each other.

Again, welcome!

Noel

dmc_emmy said:

I was not given an option, but I always have choices...
Without chemo, but with hormonal drug therapy, I have a 27% chance of surviving without cancer. With chemo, I increased my chances to 40% (according to my prognosis), as long as I continued my hormonal therapy. With only chemo and no hormonal therapy, I have only a 17% chance of living without chemo.

These are my stats, they are personal and unique to my illness; just as your dx is unique to you. What works for me, physically and emotionally, is also unique to me and may not be the best choice for you. If we were all the same, maybe the researchers would have found a cure by now. But, unfortunately, they have not found a cure and, as unfair as it may seem, we are individually responsible for making perhaps the hardest and most fightening decision of our lives.

Though I was given no other option except to undergo chemo and radiation, I could have stopped it at any time. I chose not to stop, I have a daughter who needed me.

As for me, it is true for also for you: you cannot stop something that you never began. If you, or anyone, chooses to chemo, radiation, hormonal therapy, other drugs, homeopathy,...whatever-it's your choice and no one will fault you for your decision. However, should you not try something, you will never know if you have done all you could have done to beat the stats. You will never have the opportunity to stop (pull that "trump card" as Vickie Girard says in her book "There's no Place like Hope") if you don't start.

You have been dealt the cards, my friend, but it is only you who can decide which ones to play. It's up to you, but we will be with you every step of the way--that's why we have each other.
dmc

I just want to wish you the
I just want to wish you the best of luck!

Piggies

fauxma said:

Everyone isn't going by the
Everyone isn't going by the Oncotype DX test to see if they need chemo. Most of us that are using this test to help decide have small tumors, no node involvement, and low grade. This test can help to determine recurrence. I don't think that anyone is using this test alone to determine chemo. It's just another tool in determining treatment. I had a 1 cm tumor, no node involvement, grade 1 & 2. My score was 22. This is in the midde. I chose to do the study and was randomized for no chemo. I am fine with this, but if I had been randomized for chemo I would have been fine with that. If my number had been low, then I would not have had chemo and if it had been high I would have. I just happened to be in that murky middle ground. Size of tumor, node involvement and grade is probably the most important indicators for chemo. I think everyone with a large tumor or that had cancer in their nodes or a higher grade did chemo. Stage 2 and above usually always do chemo. Most of us onco test people are stage 1. Am I correct ladies or talking through my hat?
Stef

Onctotype
Yes, you are correct. I was early stage one, small tumor, no lymph nodes involved and a low recurrence score. The results of the test and other factors helped me make the decision not to have chemo. Of course, if it was deemed beneficial I would not have thought twice about having it.

lolad

Noel said:

I just want to wish you the
I just want to wish you the best of luck!

I am wrestling with the
I am wrestling with the decision to do chemo or not as well. I am er/pr + and her+. They are awaiting results from the dx test on me, and then my onco will discuss what she thinks on me doing chemo. I am wondering if i choose not to do chemo, i know that i will always have it in my head and worry about it spreading or coming back. Like i just read from someone else. This is such a difficult choice to make. Its hard to believe they actually cantell from one single test on wether or not you should take chemo treatments. Especially since i am her+ which means it was aggressive. I wish you luck and to let you know that you are not alone, many are trying to make the same decision.

mgray

I had what you had
I had invasive carcinoma with a tumor 2 centimeters. My oncologist said your risk not taking chemo that your life spand for 5 years is less and coming back stronger. I won't mention the hospital but Delaware is the highest cancer rate and my oncolgist is on the board. Don't be scared with chemo I dealt with OK and I was not sick to my stomach ever.. I got the highest treatment I am a now 10 year breast cancer survivor

rodripa9

We're going through the same dilema
Hi 4slurpee. I sent a discussion board out exactly like this about a week ago for my sister. She has your exact same stats and had an Oncotype score of 22. Today was her first treatment and happy to say she is doing well. At first I told her don't do it, it's too invasive, the side effects, etc. But then I got on this site and started hearing everyone else's stories and did further research. The Oncotype test was validated at 11-25 for the middle range, which if you look at it like that my sister was at the higher end of the scale as is your score. Not the 31 that's recommended now. My sister's doctor recommended 4 treatments of Taxotere and Cytoxan which will be given every 3 weeks. The side effects will be controlled with an assorment of medications, but hair loss seems to be inevitable. So what I told my sister (which by the way is a single, working mother of 2 teenage children) is that I'd rather see my sister without hair then to not have a sister at all in 5 to ten years. I don't want the what ifs to haunt her or myself. She lives by herself in FL and I was able to come down for her 1st treatment today, but the next 3 she will do on her own. She also had a port inserted into her chest a week ago so that the chemo drugs and other medicines will be given through there. That pain was bad the first night, but she's fine now. A real trooper considering she has no tolerance for pain. This weekend we will assess side effects, fatigue, etc. I'll keep you posted. She wants me to tell you that our prayers are with you in this difficult decission. We completely understand.