sschmidt

I am so sorry you are going through this PJ.  It is one of the worst parts...waiting.  I tell myself every time I have a test that the amount I worry has nothing to do with the results.  It is hard not to get completely wrapped up in worrying about results. 

I hope you don't have bad news.  There should be a no worry pill that is not habit forming.

XX Shirley

I have just read this entire thread with my hand over my mouth.  This has got to be one of the worst doctor stories I have heard in a long time....well ever actually.  What a complete idiot...and at your expense.  I thought I had many issues with doctors but your issues are much more maddening/repetitive than mine.

I will read every single  post you write.  You have a most beautiful sense of humor...I smiled while I was cursing like a mad dog. 

My thoughts will be with you all day tomorrow.

Shirley 

Hello audrynyc.  I was diagnosed with the same as you for a while.  I did get chemo and herceptin until another onc said that I wasn't HER2+ according to FISH testing.  I had three FISH that were negative and one IHC that was 3+.  I had 4 Herceptins with AC +T.  I read on the Herceptin site that there are some false positives.

Were you tested with IHC or FISH?  FISH is supposed to be more accurate and....I am thinking that I read somewhere that ER+ and PR+ isn't often Her2+.  I could be wrong.  Most likely I am wrong.   I do remember reading that slow growing grade 1 BC is often not Her2 +.

Good luck on the Oncotype test.  I had positive nodes so had to have chemo.

We are very lucky to ahve herceptin.  Did you see the Lifetime movie last night?  It was great but was a tear jerker.

Shirley 

I love steam, saunas, jacussi's and I do all three.  I had a full auxilla disection...2+/16.  2 and 1/2 years ago.  Have been doing steams etc whenever they are available.  Not right away....but after chemo and radiation.  I couldn't give them up but I don't think about LE often.  I don't carry heavy things on that arm.  I don't lift heavy weights at the gym but I do lift light ones.  I do water aerobics about 5 times a week with smart weights and work my arms hard.  I get messages every two weeks and no LE yet.  I am keeping my fingers crossed.

Crying...I was an expert.  I never cried in public until...BC and both parents dying in 4 months.  My best friend told me I was a crybaby.  I still wimper at times but am taking Paxil...10mg.  Makes all the difference.  I still miss my mom and dad and hate BC but can talk about it without falling apart. 

I ahd a therapist right after diagnosis...she was a survivor of 12 years after two boughts and stem cell transplant.  She told me "one day I am  going to get a call that someone found you in a puddle under a tree."  We both laughed.   I would go to support groups and be told to take an anti depressant, but I didn't.  Finally i got really tired of crying and started on the lowest dose.  It worked within a week. 

 I am a teacher and was so thrilled that I could mention my parents to my small class and not cry.  My kids commented one day about my wig and I took it off for them and we all laughed...pre paxil i would have cried.

Life is great now.  I still hate BC and worry about it everyday.  I miss my mom and dad so much and get a little wet eyed at home.  I don't cry buckets at the drop of a hat.  Time elapsing and 10 mg paxil made the difference. 

BethNY I love your post. 

Is ginseng bad for e+p+ BC?  I have read some confusing stuff.  I want to drink a great green tea that has gensing in it.  Probably not much.

I have not had my port removed.  It has been two years since I needed it.  It works really well and just have it flushed every 6 weeks.  I tell myself I will ahve it removed but...I don't.  I hope I don't need it again but if I do it is there.

Anyone else jsut leave it in? 

I also have a few lies that I was told that eat away at me.  I had surgery at Stanford....when i got the path results I was in such shock that I thought they said 4 nodes positive so that is what i told the onc I saw in newport.  He told me he called Stanford and it was 4.  later Stanford confirmed that it was actually 2.  The Onc in Newport also told me I was Her2 + when I had 3 negative FISH tests....and one that he did IHC 3+.  FISH negates IHC.  I did 4 doses of Herceptin before another onc took me off. 

I had a colonoscopy several months ago and asked to stay allert so I could be sure what they told me was the truth.  I do not trust doctors very much any more.

The doc in Newport also told me there was something in my cancer cells that made them not metastecise easily.  He said it was like sending a man into the desert without water.  I still don't know what that was about.  Perhaps he did an Oncotype on my tumor.  I got the chemo anyway.  

A hospice nurse asked if my dad believed in jesus/god when he was just minutes from dying,  I told her that he was a wonderful person and that should count for something with the all knowing God ....and she said...nope it does not count.