25/26 pos nodes - WTH??

Hello  and big hugs Michele,

I was reading some of your previous posts, too.  You have been on the bullet train for sure.  Yet, you are writing coherent paragraphs on your computer and seem to have been getting good care, both good signs.   I remember how tough it was at the beginning.  It's so overwhelming.  

I would say that a clean CT/PET is a very good indication that you do not have mets anywhere else.  When you meet with your oncologist I would bet that he/she will tell you that you are good-to-go for further treatment.  I don't think your surgeon would have proceeded with surgery if he didn't believe that, also.

Hang on to the thought that you are cancer free at this point according to all the tests they have given you.  Now you are moving on to treatments to give you some more insurance.  Hug those kids and hubby and know that you will be together for a long time! 

Hi Michele,

I can understand what you are going through.  I also had a PET/CT prior to my bilateral mastectomy which indicated some "hot" nodes in my left axilla but otherwise no signs of spread anywhere else in my body.  I never dreamed I would end up having 23 out of 23 positive nodes. I also had all three levels of nodes removed and my big question was if every node they took out was positive, what did that say about the nodes that still remained in my body??  I was scared that we had discovered this cancer too late.  My nodes were heavily involved with extranodal extension.  Officially I was a Stage IIIC but my oncologist and I both knew we were possibly dealing with early mets not yet detectable by PET.

It is a hard place to be in both physically and psychologically especially when the news is still so fresh.  I was determined to be as aggressive as necessary in my treatments.  Because I already had a breast cancer dx in 2000 and was treated with DD AC/Taxol at that time, we had to choose a different chemo regimen for this new primary BC.  3 weeks after my surgery I started 6 months of oral Xeloda and 6 rounds of IV DD Taxotere.  We continued the oral Xeloda at a reduced dosage during my radiation tx which included 3 fields - chest / axilla / supraclavicular areas. I also started taking Aromasin immediately after finishing chemo and during radiation.  My onc started me on IV Zometa one month after completing rads which I have continued to take over the last 4 years at varying intervals.  I just had my annual CT scan of chest / abd / pelvis this past Monday and still remain normal (NED) after almost 5 years post dx.  I had my 10th dose of Zometa yesterday and my onc says one more dose next year and then no more Zometa.

I mention my personal treatment path only to give you hope, just as the others who have posted, that this is a diagnosis you CAN successfully treat! Yes the first year of treatment is the most difficult when you are doing chemo, rads and adjusting to the hormonal drugs.  But it will go much more quickly than you can imagine and you CAN return to a new normal and quality life.  It took some time following active treatments but I feel better now than I have in years.

I know that most of us with locally advanced BC may never feel free of the worry of recurrence but I have found that it doesn't mean you can't regain a fully productive and rewarding quality of life that does not have to revolve around BC.

Michele my suggestion to you would be to develop an open and honest relationship with your oncologist and other medical team members.  Ask all the questions you need to satisfy your understanding of your treatment protocols.  Challenge your doctor with new research information when you come across it.  Ask specifically about the use of Zometa in your treatment plan.  It is now being given along with chemo in many cases since it is believed to be more effective during active treatment.

You are still early in your treatment phase but you have also already successfully removed both affected breasts and those 25 positive nodes which as dlb823 says were effectively "doing their job".  Consider yourself cancer free now and let the chemo, rads and hormonals do the final "clean up" to keep you that way! Know that there are very many ladies on these forums with lots of positive nodes who are many years out from dx and still NED.

Hang in there!

Linda

Michelle -

I'm glad we could help.   And we'll look forward to what you have to report back from your next onc visit. 

I'm not sure why they make a differentiation between stage III a,b and c.  Sometimes when I'm in a lousy mood I think it's because they want to scare us.  But I don't feel any different when I thought I was stage IIIa then I do now when I know I'm stage IIIc.  Life is still as important, everyday is still as beautiful and I still plan on many, many more years.

It does sound like a good, standard regimen. And then you also get radiation prior to starting hormone therapy.

There are 3 other things I can think of:

1) adding Xeloda during radiation (a few ladies on this board have done this)

2) remove your ovaries and start immediately on an AI

3) adding Zometa to the chemo regimen (or afterward).

Did your Onc discuss any of these additional options?