Newly diagnosed and confused - Page 2

MJo · 10-23-2006, 07:23 AM

Correct my typos to "I was stage 1, node neg, er+pr+her2+." mJO

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.

Soccermom · 10-24-2006, 08:05 PM

Dear Soccermom927,
Ironically I am Soccermom too...and originally from S Jersey. I was diagnosed Dec 13th 2004 (age 49) stage IIB. IDC,multifocal, 1 node +,lymphatic invasion etc..unclear margins,bilateral mast Jan 07,ER/PR+, Her2+++. Completed A/C X4 ,Taxol X4 ,1 year Herceptin (completed July 06) now on Arimidex.
Sorry that you have joined Club! BUT this is a great place to help you get "grounded". (Ahhh, Boy do I remember "brain overload")!
No advice from me just wanted you to know that theres someone else out her in cyberspace wishing you well! Take deep breaths and remember you are not alone.
Big Hugs,
Marcia

Bev · 10-24-2006, 08:49 PM

Sorry Irma. Now you have a place to start from. None of us got what we were hoping for. I say this in the sincerest way. I'm saying now you can research, take charge and decide what course you will take. Not knowing and false hopes are a little harder to take. There's no reason at this point for there not to be a happy ending. Stay the course. Keep us posted. Bev

SusanV · 10-25-2006, 11:51 AM

Just wanted to say, stay strong and gather up your support team...friends, family, neighbors whoever they may be and let them take care of you and your needs for now. I wish you well in the next couple of difficult and sometimes seemingly impossible weeks.

Vanessa · 10-25-2006, 12:03 PM

I just wanted to say I am sorry that your news keeps getting worse. My news also kept getting worse, before it started getting better and I hope your news gets better also. After my surgery I was diagnosed as Stage 2 and 3 cancer, but after a petscan that showed liver metastasis, I was diagnosed as Stage 4 cancer. After 3 months of chemo and Herceptin, my petscans were clear and if my follow-up petscan on November 16th is clear, I can discontinue chemo. I will have to still remain on Herceptin. My oncologist originally told me I would be on chemo indefinately. I realize that my risk of recurrence is high, but I am hangin on the good news. I am telling you all of that to give you some encouragement. I know others having encouraging words as well. I wish you all the best.

John21 · 10-26-2006, 08:22 AM

Stay strong, get educated and hang in there. Like the others have said, being all positive can be a good thing too! There are alot more available treatment options. This type is more aggresive but your options are not limited. Take it from my wife, stage IV Her/er/pr positive for almost 5 years now. The more the options the better. Work on one therapy and move to the next when than starts to not work. Don't drop the ball as i say! Keep informed and check out any abnormality right away that you think is happening. From headaches to coughs to aches and pains. It is better to check it out now than 3 months down the line. Prayers are with you from all!

John

BonnieT · 10-26-2006, 09:35 AM

Dear Soccer mom
First of all, sorry to hear about your news. We have all been there and understand how scary it is , it seems to get worse before it gets better. You will be amazed at how strong you can be !!
Have you seen the Oncologist yet ?? I would talk to the oncologist to find out your options.
I am 42 and at age 38 I was diag.with stage 1 I had a bilateral mastectomy( my mom died from breast CA), I chose not to have reconstruction,which ended up being a good decision for me, since my cancer came back in the same spot right under the skin. I wasn't on any preventive medication because they thought the cancer was so small , and that they got it all. So more surgery and then chemo. and radiation. and herceptin. If you can't have reconstruction right away, you can always wear prosthetics. THat is what I have , they fit right inside a pocket in a special made bra.
You can't wear them for about 6 weeks after surgery but they can get you a camosel with really light ( almost like little pillows) to make you feel more comfortable. I didn't even know any of this was available until I went thru it.
God Bless, and whatever you decide to do , will be the right chose for you. The people here are wonderful and strong and have helped me get thru the tough times. I don't know what I would do without this support !!!!
Take Care
BonnieT