Does TN always require chemo?

Sher

In June, my excisional biopsy removed a 9mm IDC, Stage 1, Grade 3, TN tumor, no repeat on nodes tested previously.  This is a recurrence from 8mm IDC, Stage 1 (not sure about grade?), ER/PR+, HER2-, 0/14 nodes, tumor in 2000 which was treated by lumpectomy and rads and 5 years of Tamoxifen. 

My question now is, if there is currently NED, is chemo always given?   I'm having trouble accepting that I might have to do chemo, probably since I managed to escape it previously.  But also, I'm having trouble wrapping my head around doing chemo for what might be there, not what is there.  My oncologist has already recommended 4 cycles TC which of course will be subject to change depending on my final pathology.  She completed the Adjuvant Online thing and found my 10 year risk of recurrence to be at 22%.  If chemo is done, then it lists Benefit = 6.1 and I didn't think to ask if that meant a reduction of just 6% or a reduction to 6% from 22%.  Also, from what I've read, the first 3 years are the big ones.  Should a 3 year risk computation have been done? 

Any light you can shed on this will be appreciated! 

FloridaLady

Sher, You have a unusual story.  (I one of the strange bird's too.)  I don't know the answer to your question. A lot of us are NED after surgery, it's what happen after surgery that counts.  But my thought is...they want to do chemo because you had a recurrence and a different kind of bc, and also Grade 3.  Maybe if you do chemo this time it will be gone for good?

Flalady

Shirlann

This is very interesting.  Back in 1998, when I was diagnosed, I had a 7mm cancer, no nodes, and a Triple Neg.  They just did a lumpectomy and rads.  I went to UCLA, to the Susan G. Komen center, and they agreed, this was the correct treatment.

Jump ahead 9 years, almost 10 years.  Now, they seem to do chemo regardless of the size of the tumor for triple negs..  I guess studies have been done that make this the treatment recommended.

They didn't seem to know much about Tri Neg's back then, and no one mentioned much at all.  It was just being investigated.

So what to do?  I tend to go with the current research, but man, since I have been fine, (pure luck) I am glad I was diagnosed and missed the chemo part.  I sure wouldn't feel that way if I had recurred.  That's for sure.

Hugs, Shirlann 

Sher

I just got back from my follow up appointment with the surgeon and my final pathology is clean.  So now I'll see the oncologist as planned in a couple weeks and it will be decision time.  I did some checking and found the Adjuvant Online decision making tool thing is - no chemo 69.6 alive and without cancer in 10 years.  With chemo - 75.7 would be alive and without cancer in 10 years, just an increase of 6.1 which isn't much to my way of thinking, especially with all that can happen during chemotherapy.  Adjuvant Online - Therapy Effectiveness portion of the prognosis, doesn't seem to be current with the chemo that the oncologist has recommended.  Does anyone know if there are other "tools" that compute or estimate percentages and risks, etc?

ninel

Sher,

What is this Adjuvant Online decision making tool you are using? And is there one for NeoAdjuvant?

Ninel

Roya

 Sher,

I had my first oncology visit this past Monday.  My left lumpectomy was 6/20/08 and I was stage 2, nodes neg. clean margins, triple negative.

My doc highly recommended both chemo and radiation.  I was advised that 'triple neg' is very agressive and thus, should be treated aggressively.  She said that if the circulatory system carries even one tiny cancer cell, it can cause a recurrance at a later date.  Chemo is like 'insurance' against this happening.  Taking chemo, in my case, will practically insure nonrecurrance.    That is what my onc told me.                 

I have elected to do chemo which I will take beginning in 2 weeks.  After my final round of chemo I will do radiation.  I dread the side effects but have decided that this is a small price to pay in the long run.

Last night I explained as much as I could to my kids, ages 4, 14, & 17 about how I will probably lose my hair, weight,  and other changes to expect.  I plan to be around for them for a long time to come.  My kids are one of the main reasons that I will take this path.

Roya

Sher

ninel, Adjuvant Online is a decision making tool for health care professionals to use, entering pertinent information and it gives percentages with and without treatment.  Adjuvant! for Breast Cancer (Version 8.0) is what my oncologist used when I asked her about my percentages.  You can google it and go to the web site, but are supposed to be a health care professional to use it.  I didn't push the issue, so not sure exactly if it is possible to access without some type of verification of this.  I read somewhere that Version 9 will be available soon.  Not sure about NeoAdjuvant in Version 9, but Version 8 doesn't show anything about it in the print out I received from my oncologist. 

Thanks Roya for the "insurance" explanation which helps to put it in a little better perspective.  And I do understand that being NED doesn't mean there are not smaller cells that just can't be seen with tests.  I wish you the very best with your treatment. Your children will be shining lights to give you strength and see you through!  Blessings!

IsabellasMom

Sher,

I was diagnosed with tn bc in October 2006.  I elected to have a bilateral mastectomy because I wanted to avoid the chemo.  About 7 or 8 months later I was experiencing pain at the sight of the original tumor.  I'm not sure if the pain was cancer related or not (because I still have the pain), but it did lead me (eventually, after several doctors), to find that there was cancer in an internal mammory node (which they do not routinely check during surgery).  If I they would have tested an internal node, I probably would have done things differently the first time arround.  After this "recurrence" as they call it, I did have radiation and chemo.  (AC x4, taxol x4).  It's been only 5 months since chemo ended, so I don't know how it's going to turn out.  For me, I'll be happy if I reach the 1 year mark! 

There wasn't a huge difference in the survival rate that they did on the computer in the doctor's office.  Mine was based on 10 years.  I would have liked to have seen one based on 3 years as well.  Everything is so confusing sometimes.  But, one thing I do know from reading and talking to others is that everyone is different.  And I know that I still have to keep fighting because I have a 2 year old to raise.  I wish you the best.

Sher

Hi Carla,

I had to "google" to find out what/where mammary nodes are.  How did your doctors eventually find the cancer there?   Did you have axillary node involvement as well?

Yes, this all is definitely very confusing sometimes.  I cannot imagine what women did years ago before computers.  The information and support out there is a very large part of what is helping me get through this!

Good health and many blessings to you! 

IsabellasMom

Hi Sheri,

After complaining over and over again about pain to my oncologist, I went back to my surgeon.  He ordered a PET Scan.  It showed a hot spot.  Then had a biopsy. 

I had no node involvement when I had the bilateral mastectomy.  But, since they didn't test any internal nodes, I really didn't know if the cancer was there.  I suspect it was, but who ever knows.  Needless to say, I found a new oncologist, one who will listen. 

But, I want you to know that what hapenned to me is very unusual.  I have heard of many, many women who have declined chemo and are still cancer free.  Personally, I'm glad I finally listened to the doctors and had chemo.  It's done and over with.  (It isn't nearly as bad as you might hear.)  Although, I certainly hope I never have to do it again.  But, if I do, I will. 

Listen and learn all you can.  Then the answer will come to you.  You will be in my thoughts. 

Malady

I really don't have an answer to your question but I had 1.4 cm tumour removed about ten months ago.    All tests came out fine (node negative) and everything looked clean.   I am 67 years old.   After a lot of researching and my own gut feeling, I decided not to go with the chemo.     I am just trying to stay healthy.   I take 1000 IU of Vit D and also take flax seed and after that just hope for the best.   All we can do is make a decision, hope for the best and then get on with life.

jeriss

Hi Sher,

Chemotherapy and radiation is highly recommended for any triple negative grading regardless of the stage. TN is a breast cancer subtype that does not respond to hormone therapy because the tumor is not fed by estrogen. However, TN's have responded to chemotherapy and radiation. As far as adjuvant online, it can only be accessed by a healthcare professional. I work for physicians so my oncologist logged on and plugged in my stats while I was in his office. My tumor was stage 1, 1.1 cm 1/14 nodes. I am in very good health (minus the BC), my adjuvant online profile says that 53 out of 100 women are alive and without cancer in 10 years with no additional therapy, with therapy 75 out of 100 are alive without a recurrence in 10 years. After three years those stats greatly increase.

There has been a lot more research focused on the triple negative grade in the last couple of years, I suspect there will be more that will benefit us in the future...hang in there.

I had my first round of chemo this past Thursday, today is Sunday and I have not had one side effect...thank God! I worked out the next morning before going to get my neulasta shot (I was dreading it!), I worked out on Saturday, then went to dinner that evening, and church today. No problems as of today, but that could change with subsequent therapy.

Hugs to Everyone,

Jeris

jeriss

By the way,

Johns Hopkins has an online breast cancer forum called "Ask the Expert". There are tons of post regarding a TN BC diagnosis. More importantly, you can ask a breast cancer specialist a specific question and get an informed response. The website is www.hopkinsbreastcenter.org/services/ask_expert.

More Hugs,

Jeris

janinvan

re chemo for triple neg....'we' don't have pills developed -like positive estrogens or shots-like herceptin!!  chemo is good for triple negs--But in a way---we are "behind the times" !!

Shirlann

Hi gals, I was diagnosed almost 10 years ago, Triple Negative, and they were just starting to work on that.  They did not do chemo with me, but I think they didn't know any better.

The GOOD news is, if you get through 2 to 3 years post treatment, you are very unlikely to recur or met.  While the other types have a slow downward curve, Tri-Negs just drop.  So that is nice.

Gentle hugs, Shiralnn