Positive lymph node--chemo?

Hopeful99

I have just barely Stage II breast cancer-- had 2.2 cm tumor removed one lymph node out of 8 had less than 2mm micrometastisis. My oncologist ordered oncotype -- got score of 10! He said no chemo as I am strongly ER/PR positive. Other oncologist say need to do 4x TC because the oncotype is for node negative and I am pre- menopausal-- I am 47. If I was older she would say no chemo. She will say no chemo if I sign up for trial going on right now where women with oncotype less than 25 and pr/ER positive get randomly selected to do chemo or not!! I am so confused. Have 6 year old son and not want to risk anything!!

Elizabeth1889

Hopeful99, The decision to do or not do chemo is one that only you can make.  I can only share my experience.  I had only one positive node, a macromet at 5mm.  Although I was Grade 1, I decided to do chemo so I did not have the Oncotype DX.  The tipping point for me was that my MO said if BC reached a lymph node, it could be lurking anywhere.  I had 4 rounds of TC and it was not nearly as bad as I feared.  Afterward, I had rads and I am now on Arimidex.  I wanted to know that I did everything possible to prevent a recurrence.  Good luck with whatever you decide.

Hopeful99

Thanks so much for sharing-- have you had negative effects from chemo?

Elizabeth1889

I have had no noticeable long term effects from chemo. My middle-aged brain still functions as well as can be expected and my post chemo blood counts are "none the worse for wear" according to my MO. Of course, losing my hair was no fun, but it is growing back.  My MO did an excellent job of controlling the side effects during and after my chemo infusions.  Never be afraid to complain about SE's.  There is always an MO on call and they expect their patients to have SE's, but they cannot help you unless they know you need help.  If you decide to do chemo, the chemo threads have lots of great suggestions on how to prepare for treatments.  Their shopping list was very helpful.  I wish you well with whatever you decide.  It is a very difficult decision to make.

coraleliz

Hopeful-The chemo decision was really hard for me. I ultimately decided against it. I was grade 1 & had 2 positive nodes. My onco score was 4. I wanted to participate in the study you mentioned but it took a long time for my MO to agree to run the Oncotype test & I was led to believe I wouldn't be accepted.......

You have to keep in mind that you are grade 2 & that responds better to chemo than grade 1. You have a micromet(<2mm). This is often treated like node negative by some. There isn't a clear path. Hopefully you'll reach a decision soon, I took way too long.

jdwench

Hopeful99,  I am sort of in the same boat, only my tumor turned out to be 3.8 cm (originally thought to be 2 cm) and I have two micrometastases, one is 1 mm, the other is 0.2 mm (of 4 nodes). One oncologist is saying chemo, the other is recommending the oncotype dx test. I thought the test was ordered at the time of surgery but it was not. I wonder if doing the test now has any value since I will most likely be doing chemo? both MO's are still telling me it's up to me so the test may help my decision. they also say my tumor size doesn't influence chemo, since I got clean margins. Are micrometastases considered positive? I wouldn't mind getting out of chemo but I have to feel ok about the risk. the surgery decision alone was difficult, I feel like I can't make any more.

 I didn't think this was even going to be optional.

 Judy 

Hopeful99

jdwench:  Thank you so much for the info.  I went to see another OM yesterday and she said that she would not have ordered the oncotype test because she does not know what to do with it for node positive women who are premenopausal like me.  She would recommend chemo.  But my doctor at Johns Hopkins and John Hopkins generally orders oncotype for any patient who has 1-3 positive nodes.  It is what they do and he said that he discussed my case with 7 oncologists there and only one of them said that Tamoxifin alone is not enough and that I should also have something done to my ovaries to reduce the hormone level together with 2 others who also ovary work. None of them "recommended" chemo, although one saw it as an "option". So I have decided not to do chemo and go with Johns Hopkins, but I know that other institutions would do things differently. Also I think ordering the oncotype may help decide what type of chemo they give you--at least perhaps you can have a TC instead of AC-T at least one OM thinks that way.

I want to tell you that I agree with you--it seems that they leave too much to the patient.  It is a bit ridiculous. It has been extremely hard time for me.

Hopeful99

Coraleliz,Thanks so much. Your oncotype type was really low --4--that is great and Grade 1.  I wish I had that. But I nevertheless have decided to go with no chemo. I have taken too long too--it is already 6 weeks since my surgery!!! I feel I needed to be taking Tamoxifin yesterday!

cookiegal

If you look at the charts women with the low oncotype do not get a benefit from chemo...even with a whole lot more nodes...the morality rate for very low oncotype women is an itsy bitsy bit higher with the chemo...within the margin of error.

If you look at the charts for node positive...it really helps make sense.

There are now a number of node pos women who opt out of chemo... google oncotype for node positive, and read the companies literature. Back when I decided I was almost the only one!

I am not anti chemo, but there is just nothing in those charts that would inspire me to do it with an oncotype of 10. 

jdwench

Hopeful99, I guess it would be different for me because technically at this time I am post menopausal, at 46. but while the cancer was in there I was pre-menopausal and then on extrogen replacement for two years after a hysterectomy. so I wonder if my situation is truly considered post-menopausal since I only stopped the estrogen at the time of dx.

 cookiegal, are the charts on the oncotype website? I think I'm going to go ahead and have them order the test, need to check with the insurance company first. or do I need to check with the oncotype provider?

 confused as always.

 Judy 

SpecialK

jdwench - you became surgically menopausal when you had a hysterectomy regardless of of your use of HRT.  When was your BC surgery?  Doing the oncotype dx test requires sending samples of your tumor to Genomic for testing, I am not sure if that can be done long after surgery if the test was not ordered at that time, and they are the only lab that does this testing.  You would also need to ask whether your insurance would cover the test, not all will cover it.

Rose_d

Hopeful99,

 I think my situation is relatively similar.  I am 40 (diagnosed 2 weeks before my 40th birthday in Jan).  I had a 1.7 cm grade 2 tumor.  Found it in 1 of 18 lymph nodes (2.5 mm) and I did a double mastectomy. ER/PR + HER -.

My doctor wouldn't do the oncotype test because she said it is not relevant for someone my age and pre-menopausal.  She explained it as "oncotype testing tells me the likelihood of the cancer returning in 10 years.  I'm not interested in 10 years for you, I'm interested in 20, 30, 40 years".

 So I was told absolutely must do chemo.  4 rounds of A/C and 4 rounds of Taxol.  Then 5 years of tamoxifen and arimidex after that.

 She also gave me the following odds for me -

likelihood of reoccurance after mastectomy - 35%

likelihood after the chemo goes to - 17%

likelihood after tamoxifen - 12%

lifelihood after arimidex - 8%

She said her goal is to get my odds of this coming back below 10% and I need to do all of those things to get there.

So here we go - I start on April 17th.  By the way, you mentioned you've waited too long.  She told me you have 10 weeks from surgery to start chemo.  My surgery was February 8th.

Good luck with your decision,

 Rose

cookiegal

for the charts:you get a report with the oncotype...ask your doctor for it...there is an extra page for node positive

coraleliz

Hopeful- It would be hard for me not to go along with 7 breast oncs at John Hopkins. Times are changing. I really hope that the RXsponder trial provides useful information for early stage, node positive women. Far too many of us are being overtreated.  I also felt an urgency to start Tamoxifen. Now that I'm on it, I'm in count down mode. Coming up on 6 months. that's 10% of the way there. It sounds encouraging to me. Good luck with Tamox & RADs if it's in your treatment plan.

Mariebee

Wow great discussion- thanks to all this helped me.

I got my oncotype resuts on Friday (my score is 25).  There is some discussion on if I'm negative or positive node.  Sentinel node result was negative.  However, during surgery (partial mastectomy) they found a positive intramammary node.  There is some debate as to consider this positive node or not; but current information is to treat it as positive.  So I have "one" positive node.

MO says to do chemo or go into the trial where it's random on if I'll have chemo or not.  He also changed the chemo treatment plan to TC based on oncotype result. This is a very mixed message- telling me its ok to go into trial and "flip the coin" for chemo.  I have 2nd opinion MO appointment in a few days.

On my oncotype DX result paperwork, which I'm still trying to intrepret. (I'm guess looking back I think the MO should have gone over this with me more in depth). But it notes the ER score (mine is 10 (looks like their scale goes to 12.5 with 6.5 being ER+)) and it notes for ER+ bc the magnitude of tamoxifen benefit increases as the ER score increases.

It also appears that the reoccurence rate (for 1-3 positive nodes and 25 as oncotype score) - my interpretation is avg rate of reoccurence with tamoxifen only is around 12-14% and with tam plus chemo it goes down a little around 10-12%. ( I keep staring at this tiny distance between these 2 lines on this sheet of paper- as if the answer is suddenly going to appear on this paper.)

Depending on the exact second I flip flop back and forth on if side effects (short/long term) are worth maybe 2%....especially with being 43 premenopausal and having PCOS (polycystic ovarian syndrome).  The only health issues I've ever had have been due to hormones.  So my intuitive says tam only is a good choice for me, my hormones and my score of 10 on the ER+..AND THEN I FLIP...and think 2% might be worth a chance to have chemo treatment.

Ok and I guess writing my mini novel here is soothing and helps me get my thoughts in order as I make this decision.  Again, thanks to all for their personal sharing.  Helps me!  Peace and unity to all!

Galsal

It sounds as though you're comfortable with the decision you've made and that is one of the biggest things at helping your mind feel better isn't it.  Good for you!  That was the goal I set for myself about deciding between lx or mx.  Once I made the choice, I was able to say I was comfortable with it and the stress lifted greatly.

No results yet for me of oncotype but will no Wed.  At least I had no nodes or skin involved.

It's a good place here for novels and talking things out isn't it. All the best to you!

WaveWhisperer

Hopeful, thanks for starting this thread. As an earlier poster noted, doctors still aren't quite sure how to treat us women with micromets in just one node. Some prefer to treat us as node-positive and some as node-negative.  

I also was given the opportunity to participate in the RXponder clinical trial after my Oncotype score came back as an 8.

However, after agonizing over my decision, I decided to go ahead with four chemo treatments of T/C, to be followed by radiation, to be followed by Arimidex. I'm older than you and post-menopausal. My choice was based mostly on personal and family history: both parents died of cancer and I had early-stage colon cancer 14 years ago. I just felt that, no matter what the stats said, my chances of recurrence were substantial and I wanted to do everything currently available to fight this. Once I decided to go with chemo, I wasn't willing to be in a trial where I might not receive it.

I've finished my T/C, and it was no picnic. Naively, I had thought the side effects mainly were nausea and hair loss, and the oncologist assured me that they now pump you with enough meds that nausea is not a problem. And I knew hair would eventually grow back. What I wasn't prepared for were all the other side effects: the diarrhea, loss of appetite, horrible taste in my mouth, nosebleeds, headaches, dry skin, night sweats, neuropathy in my hands and feet, low-grade fever, body aches, deteriorating eyesight, fuzzy brain and a debilitating fatigue.

I start radiation tomorrow, and this time I am participating in a clinical trial.

That's my story. But one thing I have learned through this process is that each of us has to make the right decision for ourselves. Doctors can show us charts and stats and odds and give us options. But, in the end, we have to decide what we can live with, physically and mentally, short-term and long-term. Everyone is different. The best you can do is get the best medical advice out there -- which you have done -- and then decide for yourself. Once you've done that, don't second-guess yourself. Just move forward.

Best of luck to you, and all of you who are going through this. 

cookiegal

Maribee!! Hi....

I was a 22 and had one node....and passed....

and yes I kept staring at that tiny gap!!! The gap only shows up at 20.5

(My personal opinion was at 25 I might have done it...but if you decide differently that's ok too! )

Intramammary nodes are one thing I know nothing about. Is it more serious or less serious?

So there is now a trial for intermediate oncotype with positive nodes? Different from TailorX?

bdavis

I had a 1.9cm tumor, grade 2, one micromet (.38mm) at age 47... My MO didn't do the oncotype as he said I needed chemo regardless... I was pre-menapausal as well.. and 98% ER/PR positive. My MO who used to work at Sloan Kettering, did not waver at all on my need for chemo... and not just 4tx but 6... So I had 6tx of TC... It was not bad at all... the drugs they gave were great at keeping the SE at bay. I worked full time and went on vacation between tx 3 and 4... That ended in May, and no lasting effects that I can tell... I have a lot of years to live and wanted my best chance at no recurrance... He and other doctors told me that if it travelled to the one node (even microscopically) it could have travelled anywhere... and the chemo would kill any rogue cells.

I then decided in lieu of radiation (after lumpectomy) to have a bilateral MX and recon... I was not in favor of radiation, but by having the MX I reduce my risk of recurrance even more... I couldn't be happier with my decision.

Mariebee

@cookiegal

Intramammary node, well most people don't know anything about it.  And many times it is confused with internal mammary node.  It has been difficult to find information on intramammary node (with cancer).  Even my MO said he had to look up information on it before our meeting.  It's unclear if this is more serious of less serious; I find opinions that say more, and find some that say less.  Most recenty accepted info appears to be "more" serious and to then treat it as positive node.  (If anyone can find some info -please share)  Again I'm sentinel node negative, but positive intramammary node which was found during surgery as it was adjacent to tumor.

Yes clinica trial S1007. Different than TailorX, (TailorX =node negative I think- and this is node positive)  (Again, for me intramammary is being counted as 1 positve node.)  (looks like started recruiting participants in 2012)  A Phase III, Randomized Clinical Trial of Standard Adjuvant Endocrine Therapy +/- Chemotherapy in Patients With 1-3 Positive Nodes, Hormone Receptor-Positive and Her2-Negative Breast Cancer With Recurrence Score (RS) of 25 or Less

http://www.clinicaltrials.gov/ct2/show/NCT01272037?term=s1007&rank=1

This phase III clinical trial is studying how well giving tamoxifen citrate, anastrozole, letrozole, or exemestane with or without chemotherapy works in treating patients with invasive breast cancer.

I've been accepted into trial and randomized to no chemo.  So I'm deciding if I go with trial or opt out and go with chemo. I'm a flip flopper!  I plan to make my decision this week (2nd opinion w/ MO in a few days).

cookiegal

Mairebee...it is totally logical to be a flip flopper.... I mean honestly for some of us flipping a coin would be a legitimate way to make a decision.

(OK I did...tails was chemo)

One thing that helps is to look at where you fall on both the node positive and negative charts. It's not a world of difference, if I remember correctly.

(Since it was 1-3, I decided the ones could be the bottom margin of error line.) 

My onc said don't be overly swayed by one node....cancer cells just like to move around. However at 22 he did suggest CMF which I declined.

If you were node negative and 25 what would you do?

I am actually kind of excited that they are willing to randomize node positive intermediates to no chemo! Two years ago I was walking on the wild side. 

WaveWhisperer

Mariebee, why didn't I think of that?? SIgning up for the trial, finding out if I was in or out of chemo and then changing my mind??? Really, that would have been the best of both worlds for me, getting the chemo once I decided to do it and then being able to help research by participating in the trial.

coraleliz

I considered the the trial. It actually started recuiting 2/2011 around the time I was diagnosed. For various reasons it didn't happen for me. I opted not to do chemo. If I were to do it, I would want to be part of the trial.

cookiegal

so excited to hear this trial is going on....I am so hoping it supports my decision...it would mean living with a little less fear

Lee7

Me too!  Oncoscore 20, a positive 3mm node, and I just couldn't do the chemo.    cookiegal, I'm hoping for the same...and for living with a little less fear. 

Mariebee

@ Coraleliz- Yes Feb 2011 is when recruiting for the trial started (my typo)

@ WaveWhisperer- (the following is written with humor...) Ha - why didn't you think of that...sign up for trial and continue with it if your randomized to the "path" you've chosen.  Well we all know you had many other thoughts consuming you as you made your decision.  I didn't really think of this, it was really the doctor's lead that had me take this path (so don't think I figured this out on my own- I was consumed with all sorts of other thoughts)

And just to update this thread with MY DECISION: had meeting with 2nd MO, and I've decided to skip chemo...so I'll be entering the trial and accepting my randomization of no chemo treatment.  I've seen others post this, and its worth repeating....this decision was based on many personal factors..each person has to select what it's best for them- everyone is different.  Some of the things I took into account

• opinions I got from 2 MO as well as my primary care
• my personal health history as well as family history
• my gut/intuition
• my oncotype DX score, and studying risk factors and predictions
• hormonal therapy options (against my personal history)
• mentally planning/preparing what I'd do with reoccurence
• I made the decision- I used my brain power to make the decision- But I came to respect the coin flip decision making process  (cookiegal got me thinking- yeah I think sometimes the coin flip is beneficial for life decisions (all sort of life decisions, and I came to peace with a coin flipping decision method))
• any many other thoughts

Next up for me: what hormone therapy to pick (the MO's differ slightly here with my treatment). but this thread, decision made for me- no chemo.

cookiegal

Mariebee....doesn't it feel good to have made a decision. It's not easy....but you did the work!

Now on with your life!

WaveWhisperer

Agree with Cooklegal. Maribee, you used a good, thoughtful process to make the decision that is right for you. Be comfortable with your decision and don't second-guess yourself. Just move forward with a positive attitude. Good for you!!!

cookiegal

I just wanted to add, being in a trial is the most profoundly helpful thing any of us can do. I'm all for walks and fundraisers, but being in the trial means that a woman in the future will get better, more targeted treatment.

As I am sitting here, it really strikes me how much things have changed since 2009 when I was DX'ed. At that point being node positive and declining chemo really put me in a very very small group.

I am excited to see things progress. Godspeed to all of us.

(I just got some kale juice...I toast you all)

Hopeful99

I am so glad to see that there are others with positive lymph nodes who have passed on chemo. I get a concerned look from friends and families whenever I tell them that I have passed on chemo....they look at me like I did something wrong.  It was well thought out--it just seems that there are institutional bias as well as personal choice involved.  Some oncologists will not order oncotype for node positive others do---and then some institutions like Johns Hopkins do as a matter of course...send for oncotype for 1-3 node positive.....I am going to start radiation next week...fingers crossed.

Thank you to all you for sharing....I toast you all and wish you all well....from bottom of my heart.

jdwench

I am glad to see others opting out also, as I have just decided to not do chemo. Multiple docs at one institution said yes to chemo 6X TC, multiple docs at another said no. I think they have a lot of faith in the direction the trials are going. Plus the fact that I am post menopausal (surgically) and the two positive nodes are micromets. my onc didn't even recommend a trial that involved chemo. so instead i'm trying to enroll in a phase III trial for Arimidex with or without metformin. All this trial talk has inspired me. Now if only this boob would stop hurting (8 weeks out) so I can get on with RADS

kudos to all the ladies considering trials, and nice discussion on the decision making process. I feel like I've been flip flopping every 5 minutes for the last 4 months! 

glad to have this decision made! and sooo relieved there are other of me out there.