Newly diagnosed and confused

SusanV · 10-22-2006, 11:25 AM

Dear Soccer Mom,

Great advice posted by everyone above..Stay connected here, and when questions come up in your mind. Post them here. The information from everyone is so valuable. When you meet with your oncologist, be sure to take a notebook with questions prepared in advance, which will aslo allow for a place for you to write down what he says. It is difficult in the beginnig to focus on the information overload, and I have found taking notes that I can look at later really helped.

I wish you well tomorrow at your visit, and I will be thinking of you

tousled1 · 10-22-2006, 03:37 PM

Soccer Mom,

Welcome to the board, but sorry you had to find yourself here. Sounds to me like all you are waiting to hear regarding the pathology report is whether they got clean margins or not and if the lymph nodes are positive.

And please do write your questions down as you think of them and take them to your doctor's appointment. That's what I did because everytime I left her office I would think of questions I should have asked. Now before she even leaves the room, she asks me if I have my list of questions! It is so hard in the beginning even knowing what to ask let alone remembering everything that the oncologist will tell you. I like to call it selective hearing - we only hear as much as we are willing to accept.

Any time you have any questions, or just need to vent or need some support this is the place to come. The women on this board are extremely knowledgeable and compassionate.

TriciaK · 10-22-2006, 04:58 PM

This is not a club anyone would wish to join, but it is one of the best in the world for the love, support and information you will need to join us as amazon warriors fighting the battle of our lives. You will find that you will gain strength you never knew you could. At first it all sounds so scary it seems overwhelming, but you take it one bite at a time and you will be surprised how manageable it all can be. I think I am probably the oldest survivor on the board---21 years fighting BC--and I am still going strong after 3 rounds with the beast, the last one 2 years ago being her2. I am NED now after 15 months of herceptin and femara (with navelbine the first 6 months, too). I only found the cancer mets to my lungs 2 years ago because I had a heart attack. My oncologist said I wouldn't have lived 3 months if they hadn't found them, but with herceptin I have had 2 good years + 4 months and still going strong. I had a triple bypass for my heart this May and am doing great at age 76. If I ever need to I can go back on herceptin again or perhaps tykerb. There is greater hope and resources now than there has ever been, and more coming out every year. Ignore the old statistics---this is a new ball game now and it is winnable. My one word of advice is to stay positive. Never say "I have cancer" but "I am fighting cancer". Learn all you can---this board is a goldmine of information. You can come here anytime, day or night, for love, prayers, support and knowledge. We will cry with you, rejoice with you and support you in every way! You can go back into the files and read everyone's past entries. There are some sad ones, but lots of joyful ones too. God bless you and your family, and remember we are all here for you! Hugs, Tricia

MJo · 10-23-2006, 06:21 AM

I was stage 1, node neg, er-pr-her2+. Got my diagnosis one year ago. Got lumpectomy, dose dense AC, Taxol & Herceptin, radiation and am taking Arimidex. Chemo was no walk in the park, but the memory has really faded. I was terrified first few months after diagnosis. I went to a support group at Wellness Community, got on this website and eventually lost some of the fear of this disease. On the positive side, I made some changes in my life that needed changing. I learned awe and respect for the human body -- everybody's tumor and treatment experience is unique. Please try to take it one day at a time -- one hour at a time if you must. I remember trying to look ahead and it was like looking into a fog. I had no idea what was in store and there was no way to predict or control. So I took it one day at a time. That helped. And I got through it. You will too....MJO

MJo · 10-23-2006, 07:23 AM

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

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.

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