ER/PR- HER2/neu+ stage 1

you are so young, if i were your mom,i would enc chemo,my oncologist made that recomendation strongly and i concurred. i am stage 1 , grade 3 her 2 positive and adriamycin ,cytoxin ,taxol and herceptin is my best chance, the a/c makes you feel crappy,but if i can do it anyone can,please let me know how you are doing,thanks,nancy.

Hang in there Kathy,

                               I am Stage 2 with Her2 positive and estrogen negative. I do know ladies like us we need to be strong and be very thankful for herceptin. Presently I am doing chemo before surgery and then I will be on Herceptin for a year. You are not alone.

Deb

Hello KathyL,

I am new to this board.  I just wanted to give you my mom's story.  She was diagnosed with Stage 0 DCIS 3 years ago, she had left mastectomy, clear margins and clear nodes.  They told her she didn't need Chemo, then a month later they decided she should do a round of Adriamycin/Cytoxin as the pathology revealed Her2neu + Overexpression.  She went ahead and did the chemo however because of negative nodes she was not given herceptin as you had to have one positive node to receive it. They told her she had a 2% chance of reoccurance. This past week she was diagnosed with Stage IV Metastatic Breast Cancer to bones and Liver, she is 52.  She just had her first round of Taxol and hoping she has a good MUGA result will begin Herceptin next Tuesday along with Zometa for bones.  I guess I am trying to say do everything you can to reduce your chances of reoccurance, even though my mom did and it still reoccurred.  But dont let them tell you that you really dont need to do this because you have little chance of reoccurance.  You can never be sure, now my mother a single parent...there are 3 of us.  Me being 35, my sister 26 and my little sister 11 are faced with this awful disease yet again.  We are from England so we have no family here other than the 4 of us.  It is devastating news, but I have faith and hope that we can put her in remission for many years.  She has no symptoms it was by accident on a PET scan that revealed it, she was having a PET scan because of issues with her TRAM Flap reconstruction and then it reveal the spread.  I will keep you all in my prayers. 

Hi Nancy,

Your diagnosis is exactly the same as mine.  I had a mastectomy on October 1 and am starting A/C chemo on Monday (Nov. 5) followed by Taxol and Herceptin.  I will also be taking Lapatinib as part of a clinical trial.  What were your side effects of AC?  I'm not sure what to expect.  I am 41 years old with three young sons and a husband....I have a very active, busy life.   Suz41

Kathy,

I would get a second opinion for sure.  I know things have changed somewhat in the past few years, but when I was dx'd in 2001, if you tumor was < 1 cm and you were node negative, chemo was not recommended for most idc cases. 

My own tumor was 2.4 cm and I was highly HER+, grade 3 and ER-/PR -.  I only did the 4 rounds of AC chemo.  Herceptin wasn't even offered unless you were Stage 4.  It's been 6 years and I am still NED. 

If I had it to do over I would still do the AC chemo!  However, there are risks to chemo and I am now dealing with them.  I have done GREAT until May of this year when I found out my heart is damaged from the Adriamycin.  I had congestive heart failure and am now dealing with severe cardiomyopathy.  And it took right at 6 years for this damage to even show up!  I'm only 51 years old and have not had high blood pressure, high cholesterol, and am not overweight, don't smoke or drink so this was quite a shock for me.  I'm currently on 6 meds and will find out in December whether or not I will be able to control this with meds.  If not, my other option is heart transplant! 

I would just really discuss your options with your doctors and then make an informed decision whether increasing your odds by 2-5% is worth the risk of chemo.

Good Luck!  I know this is tough.

Debbie

I agree, get a second opinion and then make your decision.  I too would have them factor in your age.  My Onc. put it to me this way...."because you are so young, we expect you to be around for a very long time".  I was 33 at dx and my children were 5 and 8 at the time, so I wanted to do everything I could.  I had a mastectomy and did 4AC, no herceptin because it was not offered to node negative patients 5 years ago!

In November 2005, I was diagnosed with an extensive 4cm DCIS and IDC measuring 4mm. Stage1a, Intermediate grade and 6/9 on the Bloom Richardson scale. Had an SNB and 14 nodes were negative. Receptors are ER 95+ and PR slightly positive. Her2 is +++  over-expressed (OUCH!)

Anyway, after consultations with two oncologists, both were in agreement that Chemo for me was not worth the risk versus the reward. I was told by both Oncs that I could not have Herceptin without having Chemotherapy first.( I am from Canada but have talked to several girl in the US and they told me the same rule holds true there. It was suggested that I take Femara but was told it was my decision. They did not seem to be pushing it and I declined.

I really wanted Herceptin  because of the her2 +++. I woud be interested to know if this policy has changed.

It has been over be 2 years since my mastectomy so maybe too late to consider it, I dont know.

 I have done really well  since my surgeries ---SNB and disecction, lumpectomy with unclear margins, and the the total mastectomy. 

For the past few weeks I am experiencing pain in my lower right side with some nausea, and am booked for a pelvic ultrasound. Must admit I am a little scared. The discomfort is (what I believe) to be a little too high to involve the ovary. Would love some information about that.

Hope everyone ends up with the best treatment possible. Of course. the greatest thing would be that we could then put our final treatment decision out of our minds, and never look back to second guess ourselves. Maybe that is easier said than done!

All the best to everyone here.

I would love to hear your thoughts and especially about any news regarding prescribing Herceptin without Chemo.

Hindsight tells me I should have had the ovaries out at the time of my previous surgeries and especially with 7 first  cousins having either BC or Ovarian Cancer. 4 of my cousins passed away in their forties.

Am glad to be pursuing Genetic Testing with my first appoinment booked on December 4th. If anyone can tell me how it all works, I would appreciate it so much. I do understand it begins with a counseling session but then what?

Sorry for the lenghty post .

 The best of the very best to all of you ~~

  Stephanie

Thanks Kathy ...good information. ( I am also a nurse but an "old" one at best! lol)

My GP did an internal pelvic exam yesterday and says he does not feel  a mass of any kind on my ovary. I asked if he was usually able to diagnose a tumor by manual exam and he said "yes".This gives me some hope that I am dealing with something less than what I most fear. I am booked for a pelvic ultrasound ---probably a few weeks to wait. The discomfort is so intermittent, it moves up and sometimes down into the groin. I spend half my time trying to diaganose myself!

Thanks for the info on the gene testing. I have been told it may take up to 3 months here in Canada to get the final result. I have 4 grown up daughters very anxious to hear the outcome.

Take care,

Steph