Can't decide on whether to have chemo

marjac329

Hello,

I was diagnosed with a very small triple neg cancer this spring, had a successful surgery and completed radiation. The cancer was 4mm. I was told by my chemo oncologist that I didn't need chemo considering the early catch of a very small tumor. I got a second opinion and the doctor said that "it is a grey area" whether I should take chemo or not. He also said he would take it if it was him. I asked.

Has anyone faced this issue? I am so not sure what I am going to do.

Luah

marja: Hopefully someone will be along soon to reply. I know there are a few ladies here who have had very small tumours. Sometimes age and other medical conditions come into play.  

edwards750

marja - did you have the Oncotype test? It helps the ONC decide what course of treatment is best for you. I did. My ONC was ambivalent about my treatment because of a micromet in the SN. I have Stage 2, Grade 1 IDC. My score came back low@11 so I had RADS and taking Tamoxifen. When in doubt see if you can take the test to help decide. 

Diane 

lintrollerderby

Diane: The Oncotype DX test is not used for Triple Negative or HER2+ ladies. 

placid44

Marja,

Maybe this will help: Go to tnbcfoundation.org and search for the document, "State of the Art Treatment for TNBC." The bottom of p. 8 addresses whether to have chemo for tumors smaller than 1 cm. and suggests the answer may be yes.

placid44

or go to Johns Hopkins Cancer Center's "Ask an Expert" online service. 

WalleGator

I'm in that boat and my doctor recommends the chemo. Breast tumor in each breast, triple neg on both. I did a double mastectomy last week and will start chemo in three weeks. This cancer doesn't respond well to tamoxifen, etc. used after chemo so this is the only ammunition I have to make sure we kill all those cancer cells. We're being aggressive as I'm just 43 years old.

JaneB1

I was in a similar situation with a 3mm triple negative tumor and numerous micro-invasions (but the largest tumor controls for determining treatment). My oncologist at what many consider the best cancer center in the US felt I should not do chemo as my risk of recurrence was only 3 percent. However, the oncology staff was split on this, so they offered me 8 rounds of CMF which I understand is "light" chemo. My oncologist continued to feel I should not do it as I would only get about a 1 percent reduction in my chance for recurrence (from 3 percent to 2 percent). 

I didn't know what to do so I consulted with another oncologist whom I know to be very aggressive with chemo, radiation, etc. when he thinks it is necessary. He explained that a 3 percent chance of recurrence means that you take 100 women with my diagnosis and, of those 100, 3 will recur and 97 will not. He then told me that I should not do chemo. He said that the small reduction in recurrence risk  was not worth the risk of chemo brain (especially given my profession). He said he would not do it in my situation nor would he recommend it for his wife or daughter in my situation. 

I was still unsure what to do so my surgeon arranged for me to consult with a world renown breast oncologist in Europe (I was living in Europe then although I had returned home to the US for surgery). This oncologist told me that at 3mm I did not need chemo but that he would do it for me as "extra insurance" if I wanted it. The hard thing for you is he told me that for triple negative, doctors definitely recommend chemo for 6mm and larger, that many also recommend it for 5mm tumors and that he personally recommends it for 4mm and larger tumors that are triple negative. So, he told me if my tumor were 1mm larger, he would recommend it for me (in light of the fact that triple negative tends to be very responsive to chemo and chemo is the only treatment we have for triple negative).  He told me in that situation, he would recommend 6 rounds of CMF, and not the stronger chemos with taxanes, etc. 

Ultimately, I decided not to do chemo, which my original oncologist assured me was the right decision. It was a terribly difficult decision and I have no idea if it was the right one. I have tried to do other things to reduce my risk of recurrence (lost 50 lbs, exercise intensively several times a week, eat healthily, limit alcohol) but, again, who knows?  I was 53 when diagnosed and age does make a difference in treatment recommendations. 

I am sorry you are in this situation. There are no easy answers on the best course of action. When they offered me CMF, all I could think was, "Gees, I'm not a medical professional so how can I possibly make the decision?"  But, I have since learned that cancer patients are often given choices on treatment and some of it is more art than science and some of it is a crapshoot. 

But I hope that hearing what I was told by three highly respected oncologists will be at least informative for you.  You may want to get another opinion or two before making your final decision. 

Luah

Excellent post, JaneB1.

marjac329

Thank you for all your responses. I will check into the leads you mentioned. I went to my chemo oncologist today and gave me a summary of her original opinion plus the second opinion doc's opinion. Its a grey area and it is up to me about whether I will take it or not. . I have to ponder the statistics because that is all there is to go by. I need to give the first doc an answer by the 7th of July. 

BikerLee

According to the NCCN guidelines... no.

http://www.nccn.org/patients/guidelines/stage_i_ii...

page 39.

you have a tumor under 1/2 cm.

did you have any evidence of cancer in lymph nodes?  if no, then the recommendation is no.

this decision is a tough one - but if the chemo is unlikely to benefit you, then don't do it. the side effects are not trivial.  and there are long term side effects.  many many things should go into your decision.

will you have rads?

how old are you?

what was the grade of your tumor?

did you have genetic testing?

etc...

nothing wrong with a third opinion, that is for sure.

ask about your probability of recurrence-free survival - and how that compares with and without chemo.

i honestly don't know what i would have decided. my tumor was quite a lot larger than yours, which made the decision a total no-brainer.  in some ways, that makes things easier.  

triple negative is definitely worth thinking twice about, no matter what your tumor size. but your tumor size is TINY... which is good news from the perspective of prognosis.  

marjac329

Hello again to all that responded. I had clear lymph nodes and I am age 60, to answer a previous reply post.. I went back to my original oncologist and she agreed that it was a gray area. She also said she would do i if it was het. But she disagreed with using doctors personal responses about whether they would do it.  I decided to pursue the chemo and will start next Friday. I am going to be taking cytoxen and taxotere. I am now scared of the possible side effect of leukemia or myeodysplasia from cytoxen. I am going to talk to the nurse practitioner about this on Monday. 

MomMom

Marjac, I'm happy for you that you've made a decision.  With the small size of the tumor it certainly is a gray area.  However, because TN is so very aggressive and sneaky, and we have no targeted drugs as other types of bc do, hitting it hard at the outset is important.  As you can see from my sig, I'm 67 and have had chemo for over 6 months at this point.  I have two more weekly Taxols to go.  Yea!  Then I'll have 6 1/2 weeks of radiation, and done.  I was in good shape before the DX and have been able to exercise pretty strenuously nearly every day through treatment.  I've had some minor side effects, but overall feel very fortunate that I've tolerated the chemo as well as I have.  The exercise definitely helps. 

My MO told me that the cytoxen and taxotere you will be on are much kinder to the heart than the AC (Adriamycin & Cytoxen) I was on.  Since I had no heart issues, I did the Adriamycin.  Best of luck to you in your treatment.  You may want to also check out the other TN threads, especially Calling all TNS.

Paula

Fiercer

Tough decision to make.  My Dr. Said that with chemo and rads the odds are better in your favor to do both.  I'm NED after chemo.  No living cancer found.  She said at my young age of 48 at the time, this was the best course.  I feel safer having had the chemo first.  When they removed the small tumor it had nothing living in it.

lgoldie

Great thread.  I am 56, had TNBC tumor .8 mm.  lumpectomy with great margins  Neg brca, neg. sentinel node biopsy.  Mayo MO said 4 AC and 4 Taxols followed by rads.   Not easy, HARD actually but this is it...the chance we get to irradicate.   Stage 3, very aggressive but was told caught before it went crazy.  I am in the middle of rads.  I WILL COMPLETE WHAT HAS BEEN RECOMMENDED AND THAT WILL BE THAT.   My faith has been tested and I have made it through the treatment.    Had a friend that had an huge tnbc tumor (size of small orange) at 35 while nursing.  She's 53 now.  Tumor was so big they had to do lumpectomy so she could heal as fast as possible to start chemo faster.   Boom   She lives.

redheeledwomen

Hi There,

I asked the same questions "Do I need chemo after surgery since tumor was less than 1cm and had double mastectomy with expanders and nipple sparing, negative for lymph nodes".  Technically, isnt the cancer gone?  However, my Oncologist put it to me this way:  TNC have about a 30% re-occurrence rate in your body.  By doing chemo you can reduce the risk down to 15% research has shown so why wouldn't you do all you can to reduce your risk no matter how small or big.  That's 85% rate of never having a re-occurrence.  That's what I needed to hear to move forward with chemo.  I start chemo tomorrow at 9:00am. I'm 40 years old, brca1 & brca2 negative with no family history.

The decision is yours.  Do what your instincts tell you but stay positive and fight every step of the way for your life.  You can do this!!  Power through it and reach out to your support system.  We are all here for you.  Blessings!!

MsBliss

Hi Igoldie, 

Did you mean grade 3, not stage 3?  If you had neg sentinel node, it is unlikely you would be stage 3.

Best,

Bliss

Tobycc

just had cytoxen and taxotere recommended. How bad is it?   I am supposed to do 4 rounds then radiation 

Faith4Life

If I had to do it all over again, given the same circumstances, I would always choose chemo. I wanted to do whatever I could to cancel out cancer. Cytoxan and taxotere are manageable.

momof2doxies

Tobycc….Sorry that you are faced with TNBC. Here is my advise….do the chemo. and the radiation. Chemo is the only weapon against TNBC. I have been through 2 BC diagnosis. Cytoxan and taxotere is the standard treatment x 4. As with everything else, you do it to survive. I survived and got to see my daughter married in May. My hair is about 2' in length now and I laugh at people who think I am cured.

Best Wishes

redheeledwomen

Tobycc- I'm on 4 rounds of TC as well.  The first two chemo txs weren't too bad.  The third one was the toughest with more SEs.  My fourth and last chemo is 9/23 and I'm preparing myself for what's to come.  Once you've gone through chemo you'll know how your body will respond. 

Fiercer

tobycc- as bad as it is, it was worth it for me. I'm thankful 4 rounds of each erased cancer from my body.

Just had my MRI....I'm clean going on a year and a half!

Tobycc

thanks!!!!!!!   

warnoldj

I'm going threw the same thing I had 4mm tumor removed with a lumpectomy after the oncologist said just radiation but I told her that I was going to get a second opinion after saying that she said that I can have it if I want it but not her recommendation but she said it was a gray area and would do it but I have to sign some papers relieving her of any responsibility if something was to accure during treatment like heart trouble etc. Everything I have read and research says to so my son help me with the decision. . So just don't do this by yourself.