Bad news

So sorry to read you're having to join us here  Patty. You are early in the " game " so to speak, so everything is scary. Once you've settled into a tx plan you'll feel better.

I HAD a stage IIIC Her 2 positive BC .. Lots and lots of bad prognosticators... That was almost 9 years ago. I am fine now. Happily reconstructed and living life large.. you will too

Come here often for support. The ladies here are knowledgable, an they will help you down the road that nobody wanted to go down.

Patti, take a breath & try to think "calm." Don't go to that "worst case" scenario in your mind - it won't help you. Know that we are here for you. But so sorry you have to be facing all this.

I doubt if the cancer would spread throughout your body with clear lymph nodes. Usually, that's a worry when there is lymph node involvement - that's why they check those lymph nodes, anyway. I assume the abnormal cells "everywhere" are still contained within the breast? Is this perhaps some DCIS in addition to the small (tiny) tumor that was found? I believe that with more widespread DCIS, mx is often recommended.

Remember that there are many of us with worse staging from the beginning - and we've still here! For me, it's been almost 10 years since my diagnosis of stage III, grade 3, 5 lymph nodes. And look at lkc - she was stage IIIc!

And I suspect there is a good chance your Dr. will recommend chemo and/or Herceptin (I think you expressed a concern about this in another post). Especially Herceptin if you are Her2+. Herceptin is a wonder drug!!!!

pattij - Try to remain calm.  I know it's hard.  I remember - we all do. Anxiety is a very
real thing and it can be debilitating. You might want to call your PCP and see
if you can get some anxiety meds. (He must have an off hours number...)  Having something going wrong with our bodies
is incredibly hard - the waiting for
appointments, tests, test results, and the tension that it produces is
something we are all familiar with.  You own mind becomes your worst enemy.

I'm not going to lie; the BMX is tough but you can get through it. 
Give yourself a chance to get used to the idea and try to find some peace in
the fact that this will eliminate the enemy.  Give yourself plenty of time
to heal and don't push yourself as so many of us are prone to do.   That will pay off in the long run.  If you start reading the
forum, there are lists of what to take to the hospital, how to get your house
ready, etc., etc.  Just remember If you need help, advice, or just a laugh
and a stupid game to take your mind off everything, come here.  There is
always someone here, so never be afraid to reach out.  No one knows how
this works better than the women who have already gone through it. 

Also, I learned early on that it is a great idea to take someone with you
to these kinds of appointments because (at least for me) my brain went into
overload and there were things they said that I missed, but my friend was able
catch (heck she even took notes).  So please arrange to take someone with you on Monday morning to your appointment with the oncologist.  Good luck and try not to worry too much.  Just take It one step at a time and try not to get overwhelmed.  Also, it 's a good idea to get a copy of the pathology report for yourself.  You can do this! 

..and I would be interested to hear if anyone else knows whether her2+ tumors are more likely to spread without lymph node involvement than other cancers.

also, does anyone know -- does a SNB include just the armpit lymph nodes or also the ones in your chest area?

bluepearl, thanks for your response.  That makes a lot of sense.  I wonder what the stats are on it spreading not through your lymph nodes if there isn't evidence of LVI. 

My tumor was I would say around 10 o clock, towards the outer/upper.  It is hard not to worry sometimes because it is such a sneaky disease!

Good morning, Pattij, I hope you are feeling bettter today.  You've gotten lots of advice, but I see nobody answered your qeustion about a second opinion.  I opted not to get a second surgical opinion, like you, I knew I was having a double mastectomy, no matter what.  Another opinion wouldn't have changed that. If I hadn't of liked the doctor, I would have gotten ten opinions until I found someone I liked.  Make sure you LOVE your plastic surgeon and your oncologist.  You will see you PS more than your BS after surgery and there will be subsequent surgeries.  And, I believe our relationships with our MO will be long lasting as well.  SO important to be comfortable at the treatment center.

My sister is in PA - also with docs that are part of the Fox Chase organization, lmk if you want me to hook you up with her, she starts chemo next week.  Seems like you have similar dxs.

Good luck!

jen

Cypher - re the SNB - Mum's sentinel node biopsy indicated 3 nodes - one in the armpit and 2 in the chest area. They only removed the one in the armpit, but the surgeon did poke around to have a look at the ones in the chest. I think they are very hard to remove, but he seemed to believe that they were all clear, and this was confirmed by pathology for the armpit one. It's hard to understand how the cells can spread when there's no indication of positive lymph nodes or vascular invasion, but the possibility is apparently still reasonably large. BUT thats why they have wonder drugs like herceptin, and the rest of the chemo to nuke any horrid little cells that might have snuck past the surgeons. 

Negative nodes is a wonderful thing to concentrate on pattij!

Beacon800 - thanks for posting about the new drug. It is so exciting just how quickly advances are being made in this area!

I googled Puma Biotech and was excited to see that the drug they are talking about is Neratinib. I participated in a clinical trial for this drug in January 2010 - Jan 2011 (I found out about the trial here and was lucky that my onc was an administrator.) I never did find out if I got the real drug or a placebo - since I did not get the extreme side effects that many of the others in the trial experienced, I feel like it was probably the placebo, though. 

I did TCH in 2008, and I am doing well today. It amazes me to see the number of drugs in development and/or actually being used for Her2+ breast cancer today. The Puma website says their stage 3 clinical trial of Neratinib includes many other types of cancer that overexpress Her2. 

Thanks for the information! Best wishes to those of you newly diagnosed and in treatment.