Newly diagnosed and confused

soccerm927 · 10-21-2006, 11:04 AM

Hello,

I am new to this forum and recently diagnosed on 9/25/06 with IDC, Grade 3 ER/90%+ PR 95%+ and HER 2-2+. I recently had a lumpectomy and the sentinel lymph node biopsy along with 3 additional lymph nodes removed that appeared suspicious. I also has a port inserted. I have been waiting for 10 days since my surgery on 10/12 for my pathology report. I get my results this Mon. 10/23.

I am confused with having the ER/PR and Her2 all positive versus having the ER/PR negative. It just seems everything I read on this sounds so discouraging. I would appreciate any information regarding this. I know my Dr said I would be on Herceptin for 1 yr but I have yet to see my oncologist until 10/26.

CherylS · 10-21-2006, 11:32 AM

Hi, and welcome to the board. You will, as have I, find this to be one of your most helpful resources. This board is very professionally administered and the women here are knowledgeable, experienced and caring.

It is a little confusing that you already know your ER, PR, HER2 status and grade yet don't feel you have the results of your pathology. These are the most common components, although there are others too. It is all so confusing at first, isn't it? Maybe it is the pathology on those lymph nodes you are waiting for and a final staging report (State I, II, III,IV).

First, let me say, and others will add much more to this, that the high positivity of your ER/PR status is a very good thing. This opens you up to treatment with very effective hormone treatment therapy. Which you have, Tamoxifen or an Aromatase Inhibitor will depend on whether you are pre or post menopausal. Her2/Neu, which does make for a generally more aggressive cancer is considered by some now to be a more favorable diagnosis because of the addition of Herceptin to the arsenal. You will have to undergo chemo, but that is not as scary as it sounds. Trust me, I was terrified. But now looking back it just wasn't so bad. I finished chemo last August and remained on Herceptin for one year. I am NED (no evidence of disease). Being able to combine Herceptin with a Taxane based chemo is a very potent defense against Her2 + breast cancer. Grade 3 is the highest grade, but almost all breast cancers are grade 3. Your oncologist will do a bone scan and a chest x-ray as baselines to be sure you are clear of other sites.

Statistics that you are probably reading are at best old. The most up to date resources for you will come from the clinical trials that have recently been completed on use of Herceptin. May someone could post linnks to some good articles for her?

God Bless You. Hang in there. We are here for you.

soccerm927 · 10-21-2006, 11:40 AM

Yes, you are right, I am waiting for the results of the lymph nodes and the final staging
report. I find the wait unbearable. I appreciate the information you have told me. Its just so much information on BC and not fully understanding it all can be frustrating.

CherylS · 10-21-2006, 11:51 AM

Yes, the waiting is unbearable, I know. We have all been there. Just hang on, OK? The post a few down from yours called "question about hope and faith" is a good one for you now. There are many excellent thoughts there from women here that can help strengthen you at this difficult time, OK?

soccerm927 · 10-21-2006, 12:17 PM

Cheryl, thank you for sharing your knowledge. It really helps people like me that were recently diagnosed and confused. God Bless!

panicked911 · 10-21-2006, 02:14 PM

Hi Soccer Mom and welcome ! Lousy club to join but the members are great.

I am a year ahead of you - I am also a strong triple positive and had three lymphnodes removed that turned out to be negative. I am finishing my last treatmet if herceptain on 11/1. If you are not post menapausal, your oncologist will brig up the subject - I have decided to take lupron shots once a month ( to shut down my ovaries and put me in a post menapausal state) this way i ca take arimidex or femara - which have been shown to be more effective than tamoxifen in preventing a reoccurance.
If you had a lumpectomy rather than a mastectomy, you will also need to have radiation treatment which also isn't so bad.
My advice to you is to see at least two oncologists preferably three in your area to make sue of all of your adjuvent options. I was rwtment at a major cancr ceter and I still saw three others at other cancer centers and the opinions wer wall slightly different.
Good luck to you and if you have any questions, please don't hesittate to ask.

Susanne

soccerm927 · 10-24-2006, 04:26 AM

Thank you everyone for words of encouragement. My appt did not go as I hoped. The pathology reports found that 2 Sentinel lymph nodes out of 4 are cancerous and out of the five lymph nodes removed 1 is also cancerous. I just had a lumpectomy and the sentinel lymph node biopsy on the 12th of Oct. along with the port inserted and now my Dr has informed me that a radical mastectomy would need to be done. All my auxillary nodes will be removed to see if there are any other lymph nodes with cancer. If they do find another lymph node with cancer then I will not be able to have reconstruction at the time of my mastectomy because I would need radiation right away. I am seeing my oncologist on Thurs. to see what he has to say. The surgery is ging to be scheduled next week. I don't know how to describe how I'm feeling but I do feel that fear is actually suffocating me.

Irma/soccerm927

tousled1 · 10-24-2006, 06:43 AM

Irma,

Sorry that you didn't get the results you were hoping for. There is light at the end of the tunnel. Did the surgeon get clean margins with the lumpectomy? If he did then I would see no reason why you would have to have a mastectomy. As for the lymph nodes -- if they removed 5 and only 1 was positive I don't see why they they would have remove any more. I would definitely think that you would require radiaiton but as for a mastectomy, I don't think so unless they didn't get a clear margin with the actual lumpectomy. If I were you I would ask for a copy of my pathology report and I would also get a second opinion. Hang in there!

MJo · 10-24-2006, 07:30 AM

Suffocating with fear...that's a good way of putting it. I remember that feeling. I remember telling someone that I understood a bit how a soldier feels before his/her first battle. You're scared witless, but you're going to do it anyway. In my Wellness Community support group, there are 5 women with Her2 BC and three had mastectomies and reconstruction. We are all chugging along, although some of us are more tired than others depending stage of treatment. One lady is at dog shows almost every weekend -- she raises champion Jack Russels. I know you will get through this, but I also know it's no picnic, especially in the first months when you're adjusting. Someone mentioned cleaning services, take-out food, etc. I know you're a busy mom, but if these services are possible for you, do it. Pamper yourself as much as possible. Keep writing all your feelings here. That helped me a lot. All the best to you MJO

Mary Jo · 10-24-2006, 08:02 AM

Hi Irma,

Awwww HUGE hugs to you honey!!!!! I'm sorry your pathology report wasn't what you had hoped for but trust me when I tell you that you will get through this. You will! It seems so incredibly scary at the time - and you just aren't sure how you will handle it all BUT amazingly you do. God gives us just what we need ...................... exactly when we need it.

Hang in their. Life will get better. I promise. You will smile and laugh again as you learn to travel down this road.

I pray the Lord's Peace be yours today.

Love from Wisconsin

Mary Jo

soccerm927 · 10-24-2006, 03:00 PM

Kate,

The lumpectory was unsuccessful as the surgeon was not able to get clean margins. I received a copy of the pathology report but it is not the final report because 3 of the 4 lymph nodes are positive and now 1 of the lymph nodes is also positive. I was told that when the auxillary nodes are remove, which will be next Thurs. 11/2/06, and if they find another positive lymph node then I cannot have reconstruction done at that time because I will need radiation to the breast, chest wall and lymph nodes immediately. I keep telling myself I will get through this but with each appt. the news just gets worse!

Irma

tousled1 · 10-24-2006, 04:49 PM

Irma,

I'm so sorry that they did not get clear margins with the lumpectomy. I can tell you from experience that if the axillary nodes are removed (mine were) and test positive and you have the mastectomy you will require radiation and will not be able to have immediate reconstruction. I can also tell you that I had very little pain associated with my surgery, much to my surprise. I was actually driving one week after surgery! With a mastectomy and radiation you will probably be advised to wait 5-6 months until you have reconstruction. At least that's what I was told. To be truthful, I'm not sure I'm going to have it done. I've become quite accoustomed to being flat chested. I do have my "fake boobs" and have only worn them twice. I just can't stand wearing a bra.

A friend of mine also had a lumpectomy and they did not get clear margins. She did not want a mastectomy so they operated again and still no clear margin. After yet another attempt she finally relented and got the mastectomy. She was fortunate as her lymph nodes were not involved so she had immediate reconstruction - with expander.

I opted for a bilateral as we already knew my axillary nodes were involved and I didn't want to be lopsided but most of all I was terrified of getting cancer in the other breast and having to go through everything all over again. This is a horrible disease and I'm feel so bad that you have to be going through this.

I wish you nothing but the best and I'll keep you in my prayers.