glad I found you, new and scared

sunny Lisa · 11-27-2006, 07:14 PM

HI, This is my first time posting and my story. I am 43 yrs old with a 2.5 yr old daughter. I am not brave...I am afraid. I have what they think is DCIS insitu (?) per a core biopsey. I found out later it should have been an open biopsey (changed Dr). I am ER neg and PR neg, HR2+++. The lymphnode under my arm is enlarged to 1.5 cm amd my tumor is palpable at 3cm. The MRI showed extensive cancer moving towards my chest wall and under arm area. I am scheduled for genetic testing on 11/30 and a bi lateral mastectomy 12/1. My choice to have both sides done with reconstruction,silicone implants at the same time. I do not know why I made this choice since I have very little knowledge about what is best. I sopke with an oncologist about Herception and having a port put in during this surgery and he almost tore my head off asking why I thought I would need Herceptin if my nodes turn out to be Neg. He said I do not need treatment if the nodes are neg??? He also said I should ask my husband if I should have both breasts removed!(have consult with new Dr). Pls give me feedback, Thanks, Lisa.

Mary Jo · 11-27-2006, 07:39 PM

Lisa,

Most definitely you need a new doctor. Such arrogance and such an attitude. I get very angry when I hear how some Doctors treat their patients. Shame on him.

I wish you the best. It is scary, but as time goes on and you begin treatment things do settle down a bit.

God Bless you Lisa - His Peace I pray for you.

Mary Jo

Sheila · 11-27-2006, 09:15 PM

Lisa
GET A SECOND OPINION.....If you are Her2 +, even with neg nodes, you will still reap a benefit from Herceptin...I had neg nodes, and 5 years ago Herceptin was not available for node neg early stage breast cancer....well 1 1/2 years later I was eligible because I had a recurrence, and now am Stage IV.....
Not only is your oncologist arrogant, he isn't up on the latest breast cancer treatments.....get 2 or 3 or however many opinions...its your life.....and you need to get the best treatment early!

Bev · 11-27-2006, 09:18 PM

Hi, I'm not brave either. A regular chicken shxt. You've got to do some surgery though. I had a lumpy. You'll never know what choice is right until you're 15 years down the road. I hope you had a consult with a breast surgeon and a plastic surgeon. If you're small breasted, taking out 3cm will leave a divit or pleat. But I guess it could be spread out more, where it might be uglier to do a lumpy.

I don't know why a core biopsy would be containdicated. I had one doc say do an excisional biopsy, the rest said core.

Node neg, but had a 3cm at chest wall. ER and PR+. Finishing Herceptin tomorrow. There's a search link on the purple bar at top of page. Query on Herceptin, Stage II, Stage III.

Nothing wrong with 2nd and 3rd opinion. I would be very surprised if you didn't do Herceptin. I would guess you would do A/C, then taxol and Herceptin. Rads maybe for the nodes?

Hang in there. It gets better eventually. BB

chrisy · 11-27-2006, 09:34 PM

Hi Lisa,

Sorry you had to come here, but you came to the right place. You are braver than you think - to NOT be afraid at this point would just be unnatural!

I agree, you need to at the very least get a good second opinion, and in the end find a doctor who you feel will support you and work with you.

I'm not clear, and maybe you don't have enough information yet - but it sounds like SO FAR all that is indicated is DCIS, although it is extensive.

Your onc is correct, it is not "standard protocol" to have chemo or even herceptin if the DCIS is removed, it is only DCIS, and the nodes are negative. If this is the case, however, it is critical that they look very closely for microinvasion - the standard procedure is to just look at a sampling of the tissue. Push for a thorough evaluation.

Here are a couple of recent threads related to this.

http://www.her2support.org/vbulletin...highlight=DCIS

http://www.her2support.org/vbulletin...highlight=DCIS

These threads deal specifically with the question you asked, about when/if to get further treatment of DCIS. Not to scare you, but Her2+++ is a sneaky one, and we must stay vigilant. That said, remember that 99% of DCIS does not recur after it is surgically removed, so the odds are in your favor if there is no indication of invasion in the breast or spread to the nodes.

This is the hardest time of all - the waiting for surgery and to find out what you are dealing with. Then you will be able to move forward with the next decision. Try to take it one step at a time.

Take care
Chris

RhondaH · 11-27-2006, 11:41 PM

I am sorry you are going through this. I TOO would recommend a second opinion. I was HER2+ and no nodes and just finished my last Herceptin on 8/10/06. You WANT to be aggressive when it comes to this stuff. Take care and God bless.

Rhonda

KellyA · 11-28-2006, 04:25 AM

GET A NEW DOCTOR!! I agree. I was dx.'d in May of this year- 2.2cm, er/pr -, her2+, and 3 positive nodes. I chose to have a double mast. with implants. Glad I made the decision- and by the way- my hubby didn't mind - when your fighting for your life, its amazing what doesn't matter anymore. All I know is that I have 3 beautiful little boys that I want to be here for.

This is the hardest time. It gets easier. If you need someone to talk to, I 'm here.

Love, Kelly

momdeeco · 11-28-2006, 05:37 AM

My heart goes out to you as you make decision on fighting this disease. Don't be afraid to seek a 2nd or 3rd opinion. I went for a 3rd opinion and am so glad I did. (Wished I would have done it sooner!)
Praying for you and your family,