Her2neu and I have many questions

Just my opinions here: I do not think they will do recon while on chemo. Most chemos and radiation wreck your immune system, so I would advise against it UNTIL your white blood cell count comes back to an acceptable level.

(((((((I am currently 4 months post TCH, just did Herceptin #11 this morning and about 40 days out from finishing rads and my white counts are still LOW! ))))))

Although you didn't have any positive nodes just ask your onc for a PET scan. Explain your fears they may give in.

Breast cancer stages are based on the # of positive nodes- I can't find the staging link, but I am sure someone will chime in here

GOOD LUCK!

Hi Sue 

Has anyone shared your path report with you yet, do you know if you had nodes affected? Your path report will also let you know if you had any vascular involvement (LVI) however even if nodes and LVI are negative you show in your subline that you were 2cm which would make you stage 2 and even stage 1 like me with a grade 3 tumor and Her2 positive needed the chemo and Herceptin for a year as it is a very aggressive tumor and there may have been a rogue cell that escaped microscopically. That being said Herceptin is very doable and has shown outstanding results on this type of bc.

Good luck and ask as many questions as you need. 

I have a HER+ score (FISH), and an 8% Ki-67 score. My question is how much does the Ki-67 score factor in to the "aggressiveness" and how much does the HER2 score?. 

Would an Oncotype DX test be worthwhile for me?

Ki67 is a score to illustrate how on the move the cancer is under 10 percent is a better score I believe. Also Her 2 gals are almost always advised to have chemo so an oncotype really isnt necessary, that being said I had one and any others that did all got a high score if HER2, Also it is really irrelevant as Oncotype does not factor in Herceptin.

Is HER-2 neu positive something to be concerned about?.  I read about all you gals knowing so much about your diagnosis and my Oncologists have never discussed mine after all these years!  On 7/2003 after my mammogram came back negative, an ultrasound and my gyn's manual test found a 3.2 cm mass which showed a poorly differentiated carcinoma with negative surgical margins of resection. 1 out of 27 lymph nodes were positive.  The tumor showed a positive ER Receptor, positive PR Receptor and was HER-2 neu positive.  I have no idea what grade or stage I am and they never did anything about my being HER-2 neu positive.  Were they supposed to?  I know some of you talk about getting Herceptin but I was only given Chemo, Radiation, Lumpectomy, and Arimidex a year after other stuff.  I am irritated that when I ask questions, my Onc acts like I am wasting his time and it isn't necessary for me to be informed as long as he is doing his job. 

From what I have shared above, is there some reason any of you think they never did anything about my being HER-2 neu positive?  I have heard that unless you are in Stage 4 they were not allowing patients to even get the Herceptin.  I am just concerned if I have been left open for future problems by their ignoring the HER-2 thing.  However, I am ignorant when it comes to knowing a lot of this stuff so I would appreciate any opinions here or knowing if you had a similar diagnosis did your Onc not give you Herceptin.  Thanks for your help and any information.

Medigal, I think you should get a second opinion, and maybe a new Onc he should be glad to answer all of your questions and not be irritated.

Shadow, does the fact that I have been bc free so far mean I didn't need to ever get the Herceptin? I was never informed that they started giving it to to all HER2+ people and wonder why my Onc did not think I needed it then or even now.  My next appt. is for November and I think I will ask him about it.  Maybe he never kept up with the news that ALL people with HER2+ were allowed to get it or if he felt I didn't need it, I would like to know why for my own peace of mine.  Thanks for the info.

Hi Sue, I just wanted to chime in on the PET scan part.  I had a lumpectomy and lymph node removal (several positive nodes) and at my first oncology visit post-surgery my onc recommended a PET scan and his office scheduled it for me.  It sounds like from your post you have not seen your onc yet so I would bet that when you do he/she will recommend a PET scan.  If not, just ask about it yourself.  My experience was that the surgeons were only focused on the actual surgery and it is the onc who follows up with any additional testing and then of course the actual administration of chemo and herceptin. 

Also a word of advice - make sure your onc office does a pregnancy test before your PET scan.  I am 32 years old and when I showed up for my PET scan they ended up refusing to do it becuase my onc had not done a pregnancy test (blood, not urine) and the radioactive tracer they give you for the PET can seriously harm a fetus.  I ended up having to reschedule the PET and go back over to my onc office for a blood draw for a pregnancy test.  Negative of course as I knew it would be but a major hassle!

I had a single mast, chemo FEC-T radiation and herceptin for a year. I started recon in Dec. My PS, Onc and Radiologist advised that they reccommended waiting for a year post rad to begin recon. Your skin is so fragile that it needs time to recover. Plus, if you have rads it affects your choices for recon. Many women are not successful with Tissue Expanders on the radiated side as the skin has lost the necessary elasticity. Some try the TE's and then need to have a different operation because they fail. I decided with my PS to have TE's placed but had a Latisimus Dorsi flap done on the radiated side. I was not comfortable with the chances for TE's alone to be successful on my cancer side. I believe that one of the considerations is the size that you want to be. I wanted to return to my natural size, a D so there was going to have to be significant stretching of the skin. Hope this helps...

I have a question, I am 35 yrs old and have stage IV, grade 3 bc with mets in my liver and bone. I had 5 treatments of taxotere and 6 herceptin. I went for my echo and my ej rate dropped from 67% to 50% so my onc has delayed treatment for a month. I know this is a side effect but I was wondering how common. Has anyone else had this and had to stop herceptin??

Iago, I was answering a question from someone who wondered about why chemo and rads were being recommended after mastectomy for her with Stage I. I meant that a small tumor doesn't necessarily mean that radiation is unneeded. If the tumor is large, especially if the breast is small, it is likely to be close to the chest wall so rads is likely to be needed.  If the tumor is small, it still may have been close to the chest wall and need radiaiton. Also, stage is determined by the size of the IDC. One might be Stage I but have a large area of DCIS getting near the chest wall. Not being able to get clear magins with a mastectomy means that it was near the chest wall too.