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

Sereena, I know of others who have had no chemo with a positive node. They were like you, post menopausal.  And they used hormonal treatment and have done well. Dana Farber is an outstanding cancer center and they clearly have spent alot of time working out a treatment plan for you. 

Best.

Mandy

Sereena I am one of those post men people who doesnt have to have chemo. My oncotype test was 11 which is low percentage for recurrence. I also have a non-aggressive cancer. My onc said I did not need chemo..just radiation. So it is not a slam dunk that node involvement means chemo. The oncotype test has changed all that.

My insurance didn't want to pay for Oncotype as they said they don't pay for it being done when there is node involvement.

I had a 3 mm tumor in the SN. I had a PET/CT scan after surgery (before chemo) and it came back negative. I was very torn on the chemo, if to do it or not, as my ER+ was 98% in the IDC and 96% in the ILC, and by everything I had read, hormonal therapy was more efficient then chemo in my case.

My BS though pushed for chemo and no radiation. I was too trying to figure out if the risk of life-time side-effects was worth the 4% benefit from chemo. But I was premenopausal, tumors grade II, and with one of those very rare multiple-types-of-cancer tumors (basically multifocal IDC and cribriform of which the largest tumor was 4 mm, all embedded in a 4 cm ILC tumor, with DCIS and LCIS present too). I did the chemo (almost gave up in the middle of it). Had another PE/CT scan after chemo (negative) and lvl I ALND (14 nodes, all neg). My tumor markers were 4 after the chemo, and 0.5 a month ago.I tried the Arimidex and it was messing up my thyroid, blood pressure and heart rate (on top of the joint pain) so my onc switched me to Aromasin.

So here I am, hoping the chemo-no-rads + AI will work in the long run.

Day, your story is very similar to mine.  I seriously considered just the tamoxifen/AI route without chemo, but the combination gave me 20% increased disease-free survival risk, so went with the chemo, no rads.  The taxotere had a 5% risk of severe neuropathy (1/20!) and I got it, so when offered the rads with a 5% risk of axillary neuropathy (with subsequent loss of function of dominant hand) I declined.  MO and RO not too happy about it, but my gambling with this stuff just hasn't paid off except the chemo did get rid of positive nodes on PET scan, so overalll am at peace with my decisions.  Now having SEs to meds used to treat SEs, having trouble with the hormonal stuff, so am glad I at least got through the chemo with such good response despite SEs (most of which were temporary). No oncotype done.

I am curious as to why no rads? With 2 positive nodes, my MO and RO said that would decrease local recurrence but not mortality (or at least minimal effect), so I opted out as my own choice. Also, I had refused axillary dissection or node sampling, again because it does not improve life expectancy.

I guess I should add that after my SNB which found the positive node, I was told I had to have the full node dissection. The additional 20 nodes taken out were clean. If they had found more positive ones I would have done chemo.   I also already had a PET scan, a bone scan and then another CTscan of organs all which were ok so that factored into my decision not to do chemo at this point. 

Unfortunately, the 2nd full node removal operation left me with a 'winged scapula' from nerve damage that may never get better and so I've lost quite a bit of movement in that arm. It is also still quite painful.  I didn't want to risk Taxotere doing more damage to my already damaged nerves.

The other thing about chemo....doing it doesn't mean you automatically kill off every last cancer cell that might be out there.  Some chemos inflict their own damage and mutations which can cause secondary cancers, leukemias, heart disease etc...the risk of that happening is low but so was the absolute benefit for me.   I guess in the big picture, we all just have to do what we feel we can live with and support each other regardless of choices.   

((((Hugs))) to all going through this,

Lee

Omaz - I don't know yet. I only started taking it yesterday. Onc thought it would be prudent to not start taking it the day of the surgery or for 10 days after, just in case it might have the same SE's as Arimidex. I'm clear to take it now, so I guess I'll know in a couple of weeks.

 n3ypb - because in my case it would have brought me only 2% survival. I thought also that 2 negative PET scans and a clear lvl I ALND would not justify the risk of severe lymphedema. So did my BS think, so I skipped it.

Cookiegal--I wish they would too! 

ck_momma just posted this over on the Stage II w/lymph node involvement thread. I hope it's ok for me to paste it in here.  I found it interesting.

She posted,  "Here's a link to an article about some new research that suggests that lymph node status should not be linked to BC treatment and outcomes.  It was research done in Amsterdam but thought it would be interesting for this group.  Here's the link: http://www.cancernetwork.com/conference-reports/mbcc2011/content/article/10165/1819722.  "

Lee...great article!

Sereena - Please post how you are handling the Arimidex(sp?)...I wont be taking it until probably mid-May after radiation but am interested to know about side effects. I havent met with the Radiation Oncologist yet..that will come after my BS takes out a little more tissue and evens up the margins. More torture to my breast but at least my cancer is on the outside of the breast. I used to go to the gym an have gotten lazy. We have a treadmill at home which I get on occasionally. I am going to start today walking. May even get a bike...Exercise and water helps.

Hi Cookiegal, Yes I am really relieved to find this thread also.  I have been lurking around sites here for over 3 years, totally scared as I could not find one other person like me, who had had a micromet in sentinal node, and had not done chemo.  My treatment was 3.5 years ago and I have never come across any other ladies until just lately who did not do chemo. My specialists recommended oophorectomy instead of chemo as I had not started menopause, but was 52 years old, and was 80% er and 80% pr.

I still wonder whether I made the right decision.  I guess only time will tell.

ched

I'm standing with you too. Micromet in SN.

Hi Ladies, you can count me as another one who dodged chemo, despite two nodes involved. I had  mx, radiation and am now doing 5 years on generic arimidex.  My onc said she was comfortable with that, even though my Oncotype score was 21.  It seemed chemo would not have given me enough of a benefit to put myself through that.