Node Positive and NO chemo...any of you ladies have input?

I was diagnosed 2 years ago.  Stage 11B, Grade 3, 1 pos node.  I didn't have chemo, radiation or hormones.  I did have a lumpectomy with unclean margins resulting in small lump.  Decided on mastectomy and reconstruction but nothing else.  I'm very happy with my decision

Is this thread still active?  If so, I've got a decision to make!  I'm 51 years old, dx with Stage IIA Grade 2 IDC (x3 multifocal, largest 1.8 cm) and multiple DCIS (largest 1.0 cm).  I had lymph node dissection and they only got 5 nodes total of which 3 were positive (largest 3.2 cm with extra capsular extension, other two were macro - not micro).  I am ER+ (99%) PR+ (31%) HER2- (0%).  There is a study looking at gals with 1 to 3 positive nodes and Oncotype Score of less than 25 (my score is pending) to see if Oncotype is useful in determining if node positive women and low Oncotype do just as well without chemo as they do with chemo.

 I am leaning toward not participating in the study unless my Oncotype score is super low since the nodes are so involved.  My guess is that if he'd gotten more nodes out then I would probably have had more than 3 positive nodes but the oncologist has to take things at face value and says I qualify for the study with 3 positive nodes.

Any thoughts would be helpful! (if anyone is still out there reading this thread!)

Wow I didn't know there was an option once nodes were involved but I'm not an expert. I know about radiation being needed if one node is positive with mastectomy for premenopausal women to the node area. That's a hard question that you will need to research don't want to regret anything. Once node involvement better safe than sorry.

That's a hard decision but I'm sure you will make the one best for you

I read it on this site I think under new research studies. I will try to find it and let you know. Of course you know there would be other factors involved I just remember that one because it made me need nodal radiation after my mastectomy.

Beth, I had a similar diagnosis (multifocal IDC with largest being 1.7cm) and 1 positive node (2.5mm).  I had initially been hoping to not do chemo but my doc said given my young age (39 at diagnosis) she would absolutely recommend chemo.  When I asked her about the oncotype score she said "that looks at recurrence within 10 years, I am more worried about 20 and 30 years for you".  That made me feel SO much better.

I'm actually glad I didn't get the oncotype test done - if it had been low I would have had a harder time getting through chemo wondering if it was even helping and if it had been high I would be probably even more obsessive about recurrance than I already am.

 I think you need to decide whether or not you will be ok not having chemo.  As much as I didn't want to do it, I know that I would have always been looking over my shoulder waiting for it to come back, or really beating myself up if/when it does.

Best of luck on a tough decision.

Ali, I had 4 opinoins about radiation and really struggled with that decision.  One doc (at CHOP in Philly) spent over an hour going through all of the different studies on local recurrance rates for women with 1-3 positive nodes.  The studies show anywhere from 6% - 30% which is why there is no perfect answer on whether or not radiation makes sense.  If you believe 6% you would NOT do radiation (not worth the side effect risks and would only give you 1-2% benefit).  If you believe 30% you would definitely do it.  The consensus from 3 of the 4 docs I spoke to was that they believe the recurrance rate is likely 15-20% given my age and diagnosis.  But none of those studies take into account things like the skill of the mastectomy surgeon in removing all breast tissue.  So again it's a really unclear decision with some real implications.

At the end of the day I decided to do the radiation, mostly because I need to be able to sleep at night knowing I did everything possible to keep this from coming back.  I'm only 15 sessions through my 28 so don't know how my skin and implant will do but I'm feeling better about the decision than I was when I started.  In terms of the side effects, my doc says I have a 2% higher chance of developing lymphedema post radiation (she is not radiating my axilla since I already had 18 nodes removed) and up to 50% chance of my implant being impacted (which could mean anything from it being slightly higher than the other one to it needing to be removed and replaced). Keeping my fingers crossed.

These are really difficult decisions we have to make.  Wishing you all the best of luck!

Rose

I know each treatment is individualized and no one treatment fits everyone that's why I said there are other factors that plays in to the decision. I wasn't trying to say anyone was getting wrong treatment, I'm not a doctor.

For me the tumor board woth multiple MO, BS and RO all said I would need chemo and radiation with 1 node positive but other factors were part of it. The oncotype was cancelled after my lumpectomy.

The doctors gives us options but its up to us to do more research and make a decision we can live with. I'm sure in time you will make the right decision for you.

BethBV, just my 2 cents here... the 3 types of positive nodes you mentioned would make it a no brainer for me.  Macro is "real" while micro is now falling into the not a real positive situation.  I had no intention of letting anyone pump chemo crap into me, but that is what I decided in the end.  My Oncotype was 22 and although there is a long story to go with my positive nodes, I did the chemo.  I was 46 when dxed and have young children.  Those factors also played a role. 

If your gut tells you that more nodes would have been positive, then why the heck would you want the chance of one floating around only to come back and get you later?  Was this dx in August a recurrence?  That's what your stats look like.  I have to also say that in retrospect, I am glad I did the chemo because I really couldn't tolerate Tamoxifen.  Now I feel that I had some protection besides surgery and rads.

Beth.. I had a 1.9cm lump and one positive node (only a micromet) and was given 6 rounds of chemo. There was no question as to whether I needed it or not. No oncotype test... my MO said no point.

Beth... I think you are making the right choice. Everyone handles chemo differently, so I can only speak for myself... Follow the preventative course...look at Taxotere is a Nighmare and Taxotere Toolbox threads for suggestions. And don't be scared off by the name of the thread. Key things I suggest are rinsing your mouth with Biotene twice daily, paint your nails with Sally Hanson nail hardener, ice all your nails with frozen peas during your taxotere infusion, drink LOTS of water day before, of, and after infusion and take your steroids as prescribed. I also went to get my wig well before I lost my hair, which was almost exactly 2 weeks after starting. I vacationed in St John for 10 days between tx 3 and tx4... and worked full time... yes I did take some time off work, day of infusion, half a day for Neulasta shot and then one other day for feeling weak, tired and blah... always 3 days post chemo.  You'll be fine. Positive thinking helps a lot I believe.

I agree with bdavis. I had 4 rounds of Taxol and I had fatigue and some minor bone ain, none of the other SEs and I didn't do any of the preventatives that bdavis mentioned, although I know many who do.  You will do fine!

Hi, seconding Linda here....absolutely everyone needs to choose their own path with the facts of each unique diagnosis.

With 2 nodes and higher grade, even with the low oncoscore, I think Beth is doing the right thing.

But keeping in mind everyone is different--

I had one involved node...just a tad over the 2mm that would have kept it in the low risk category. I also had ILC, which is less agressive, albeit long-term risks are similar to IDC. After one oncotest score of 6 I had the 2nd tumor tested and that was a 16. These are both in the low category of nonbeneficial chemo. So I decided against it considering the serious side effects, including the chemobrain. (I'm a writer and my mother died of Alzheimers--not her breast cancer. Not chemobrain but how would I know for sure about myself?) Also, the chemo is less effective in tumors of my genetic composition, per their oncotype.

The MO treats the cancer--and IMHO is going to opt for chemo. Mine did, even after the 6 oncotype. We went to the tumor board for a second opinion--which was testing the 2nd tumor.

Now I'm doing the AI to reduce risk, and the many other options that might help such as daily aspirin, exercise, weight loss etc. Just my path....but every path is different and you need to listen to your own heart as well as the facts of your own situation.

Good luck with your choice.....there is no 100% confirmation in what we do, so we can only do what we believe is the best route for a long, healthy life.

Lee, we have all gone through the people "walking away" situation.  Heck, I did the whole nine yards after a lot of soul searching (surgery, chemo and rads) and still had those who "walked."  I think those friends were not real friends and surely not capable of being supportive.  While I miss some of them now, I have made some new friends who I wouldn't trade for the world.  I am emotionally back to my old self and these new friends are much more fun anyway!

Linda-n3-----Very well said.  To do or not to chemo is a very personal decision with many factors involved.  Information is power and having a medical team that you trust and can have open communication is a must.  My decision to have a double masectomy was very easy.  I do have one node positive and am waiting on my oncotype score to decide about chemo.  If it is low, then I will be on tamoxofen for  5yrs without chemo.  If it's in the gray area my MO and I are going to have to go over all the risk/benefit analysis/data and I will decide if I want to be part of a clinical trial.  If it's high, I will do chemo.  I'm more scared of chemo and it's side effects than my decision to have a BMX.  I'm a young 42 with a whole lot of life that I want to live and a lot of the world I want to see and love I want to give and receive.  I am also a nurse and the side effects of chemo are real and can be life lasting.  Yes, some people tolerate it will with little side effects.  But, I know someone who was very fit before cancer and has had horrible side effects from chemo and and radiation (ironically he was/is a pediatric ICU/oncology nurse).  His type of cancer he definitely had to go the chemo/radiation route.  I will definitely be picking his brain also once I have all of my information.  

Cancer just sucks!  But, it doesn't define me! 

Hi, how did this decision work out for you? I am really nervous about "the red devil" and the chemo they are offering. I am 39 years young and I don't like the side effects of the chemo, but I don't want to die.