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

Tom · 10-21-2006, 03:40 PM

Dear Soccer Mom,

Welcome to our humble home. When I found this site while enduring the panic of my Mom having HER2+ breast cancer, I felt as if I had crawled in out of the cold and fearful night. What a roaring fire and great cup of tea this joint turned out to be. I have made a bunch of wonderful, caring new friends, and been privy to some of the best information on breast cancer anywhere on the Web at the same time.

I can assure you that by the time you have become an "oldtimer" on this message board, you will be the most knowledgeable woman in your neighborhood, and offering advice and emotional counseling to others undergoing the same stresses you are feeling right now. You are in good hands. These women can tell you what to ask when you go to your doctors, and tell you when to give your doctor the heave ho if he or she isn't doing their best for you.

Try to relax and gather your thoughts and strengths. The next thing your doctor might ask you is if you have been going to night school for oncology. Read everything you can about your cancer, check and double check the reliability of your sources, and keep your head screwed on straight at all times. When you are down, come here for renewal. When you have a question, just post it here, and you will have an answer in hours or minutes, rather than days or months.

The members here will be with you every step of the way. The developers of this site are angels from God. They have created what amounts to your own personal "tumor board", available 24 hours a day. You can find anything from chemo strategies to recipes for flaxseed pudding...lol. And making a tasty flaxseed pudding is a whole lot harder than creating a successful treatment plan for your breast cancer. Take care, and hold on for the ride of your life. Most of all, keep your faith in the Almighty, as he lives here too.

Sincerely,
Tom

soccerm927 · 10-21-2006, 04:58 PM

Thank you Tom! I am in for a ride of my life but I know I'm not alone. I am among other newly diagnosed and survivors that offer the encouragement I need.

soccerm927 · 10-21-2006, 05:00 PM

Susanne, did you have chemo? If so, how did you do with your treatments? I don't know but I do have a fear of chemo!

sassy · 10-21-2006, 05:51 PM

Hey Soccer Mom,

I am also a triple positive, diagnosed 02/05. I received (like many others here) what is felt to be the optimal course of treatment for early stage Her2+--4 dose dense A/C, (chemo) followed by 10 weekly Taxol (chemo)/Herceptin (monoclonal antibody--wonder drug for Her2+) followed by radiation since I also had positive nodes. Please know that chemo today is much different than chemo in years past. Premeds, anti-nausea drugs and post meds have made chemo very doable. Although you will most certainly be tired and loose your hair, nausea and other side effects may never affect you at all. Throughout treatment, I was able to continue working, teaching Sunday School, children's choir and activities with my family. I never suffered from nausea and treated my hair loss as an adventure in headwear. Each person is different, but please do not fear chemo. Keep a positive attitude, take care of yourself, surround yourself with people who love and support you.

Come here anytime with questions and when you are in need of support.
________
Ecigs123

Mary Jo · 10-21-2006, 07:56 PM

Hi,

I hope this post doesn't show up twice because I just typed a reply but it didn't show up so not sure if I submitted it or not. So, I'll try again.

First off I want to offer you my support and encouragement to you. It is a scary road in the beginning but it does get easier and you will smile again. People told me that in the beginning and I didn't believe them BUT it does get easier and you will smile again. I not only smile again but I laugh too. :-)

Chemo isn't that bad. It really isn't. There are so many things they can do to help make it tolerable. And it is tolerable. I was petrified of chemo too. I'm the girl who never took ANY meds, only went to the doctor once a year for my mammogram (which did not find my cancer by the way) and my yearly gynecological exam. I thought chemo would kill me. Really I did. BUT it didn't and to be honest with you, I handled it quite well.

Cancer is doable (is that a word?) - it really is. That's not to say it's always easy and it's not to say it's a life any of us would have picked for ourselves BUT it's the life we've been given SO we make the best of the life we have. We learn, grow and are better able to reach out and help others.

Try to avoid reading too much. Sometimes we overload our brains with too much negative information and that is not a good thing. That's not to say we shouldn't learn things about our disease and try to stay abreast (no pun intended) of treatment options but there is something to say about knowing too much - overload of the brain - that can be damaging to our emotional state as well.

You'll get through it. I promise you will. We all did and you will too.

God is good - He cares about what we are going through and all we can do is trust and make the best of the situations we are in.

God Bless you dear "sister"

Mary Jo

soccerm927 · 10-21-2006, 08:11 PM

Thank you Mary Jo for replying. I believe your right when you say "brain overload". I am so overwhelmed with the what ifs but when I read what you wrote it had a calming effect that I am in need of. I just want to find out my stage and if any lymph nodes are involved, then I can get passed that and meet with my oncologist. I know its going to be a rough journey but I am so grateful to you and to others for helping me get through this.

God Bless!

CherylS · 10-22-2006, 05:37 AM

Dear Soccer Mom,

By the way, do you have another name you would like to go by? Just wanted to let you know that I will be praying for you tomorrow as you wait for those results. Please let us know what you find out, OK? Then we can go from there.

JerseyGirl · 10-22-2006, 07:27 AM

Soccer Mom

As Cheryl and MaryJo said, we're not alone here. I'm new myself, now recovering from a double masectomy after chemo. I live in NJ too and there's a bunch of us that are getting together for lunch; feel free to PM me and we'd love to have you join us next time. It's gets easier the farther you get from the diagnosis, believe me!

Julie

KathyH · 10-22-2006, 07:39 AM

Hi Friend,

I am one year and 2 months into this process. I was stage 3c at diagnosis, but after chemotherapy and Herceptin, I had surgery and they found no cancer cells! There is much to be excited about in terms of current treatment, much of it so new that statistical information doesn't reflect what is true for today. The only thought I can offer is try to turn the WHAT IFs into WHAT NOWs. If you can concentrate on the fact that you have great methods of treatment on your side and that this IS a curable disease, the what nows are doable. God has never given me the grace for the what ifs, but he had given me abundant grace for the what nows.

Blessings to you, Kathy

suzan w · 10-22-2006, 10:10 AM

Hi SoccerMom! Welcome! You will find great strength, courage and information here. I, too, was dx'd triple positive, node neg.invasive lobular carcinoma..had bilateral mastectomy 6/05, followed by A/C (adriamycin/cytoxan) and I have just finished (10/4/06) a year of herceptin-3 week intervals. I am taking Arimidex (an AI) for 5 years (4 to go!). Looking back: scariest times-waiting for test results.Chemo sucked-I had lots of side effects-but I did it and am so glad I did! Scans I had: bone scan (at start and end of treatment), CT scan, liver ultrasound, MUGA heart scans every 3 months. I also had the Oncotype DX test done to help me decide on a course of chemo. Herceptin has some lingering side effects but all in all they are very tolerable and have lessened with time. Again, side effects are nothing compared to the benefits of these treatments. I feel very fortunate to have received top-notch care, in an age of cutting edge technology and treatments for breast cancer. Believe it or not, sometimes 5 or 6 hours pass in a day that I don't think about breast cancer!!! It used to be a constant thought/worry. Will be thinking about you tomorrow as you wait for your test results.

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