Hello from a newbie

Heart Sutra · 11-25-2006, 08:59 PM

Thank you for being here.
I saw this site a couple of weeks ago when my beloved was diagnosed with Her2 3+ positive IDC, rated III/III. Tumor is about 2cm.
She is scheduled for a modified mastectomy on Dec. 5th ( first surgery was rescheduled due to surgical office staff incompetence), and as you all know, we'll know more then. We will post what we learn.
We're scared...
What I've learned thus far is that it is easy to find conflicting information about any of the myriad aspects of this disease. Even this topic of being Her2 positive is not one sided simple.
This is why my partner, Sue, stays away from the internet. For me, I've been searching for information as if I could discover a cure...desperation does that. And although I don't feel desperate, I know that I am, for she is all the world to me and I want her to be healthy and happy.
For the most part we're positive, but those other moments do come. I'm sure you know...
I am truly grateful to all of you who've shared your stories, you serve others more than you might know. Thank you a million times.
---Kevin---

michele u · 11-25-2006, 10:37 PM

Kevin,

This is the right place to be. We've all been through this. I was dx 2003 with stage 3b Her2 pos er/pr neg. breast cancer. I had 35 pos nodes. I did the Herceptin adjuvant trial and am here with no recurrence. It sounds like they don't know what stage yet right? Hang in there. It DOES get easier. The first 6 months were the hardest. there is alot of hope, don't let anyone take that from you both. Ask any questions, we will be here for you!

Lolly · 11-25-2006, 11:12 PM

Kevin, I'm sure you know that it's one day at a time right now, but the internet can be a great resource. Also scary though. Try not to let the more negative aspects of this type of cancer throw you. As Michele says, there's much hope.

<3 Lolly

Mary Anne in TX · 11-26-2006, 05:36 AM

Hope does abound, especially in the hearts and souls of the incredible women on this site! Sometimes my research scares me spitless, but I just take a deep breath and keep on, soon finding that little spark or even a flame of encouragement in the courage and power of those who have paved the way for us. Keep learning, and most of all, keep believing in the victory you seek. Every time I ask questions, I get not just answers, but a big hope boost! Keep making memorable moments together ... they will get you through the tough times. Best wishes for a peaceful day,

SusanV · 11-26-2006, 12:05 PM

Kevin,

Please keep us posted on Sue's progress....share with her the good news that you find on the internet, and on this site. Sounds like one thing is for sure, she has a great support system in you !!!! These unbearable/difficult times are easier when shared with the one you love. I wish you all the best.

chrisy · 11-26-2006, 05:30 PM

Kevin,

I'm so sorry you and Sue are having to face this, but glad that you are facing it together. It is really hard for the loved ones - but you are helping by being there for her and by searching for information. Knowledge is power.

As you may have read by now, the Her2+ cancer WAS associated with poor prognosis. I say WAS because those statistics were before the use of adjuvant Herceptin. Now it is considered by some to be one of the more favorable diagnoses. So please do not be disheartened by all the doom and gloom - the game has changed significantly just in the past year.

Take it one step at a time.

Take care
chris

saleboat · 11-26-2006, 05:55 PM

Dear Kevin,

I'm so sorry to hear your news-- we don't want anyone else to join our club!!! Please keep holding onto each other, and to the extent that you can, take it one day at a time. For me, the newly diagnosed stage was the most frought with anxiety, and once you have a game plan in place, and learn more about your foe, you'll start to feel more power over the situation.

Please know that there is a lot of hope for us Her2 patients. It is a bad news/good news diagnosis. It is an aggressive type of bc to have, but it is now one of the most treatable becauase of Herceptin. Plus there are other drugs in the pipeline that hopefully will one day lead to a cure.

I'm finished chemo just over a year ago, and life is largely back to normal. I think it will always haunt me, but I'm back to living my life, traveling, spending time with my loved ones...all the good stuff that life offers.

I wish you all the best.

Namaste.

Jen

Jean · 11-26-2006, 07:59 PM

Dear Kevin,

I am so sorry that Sue has been dx with bc, but you have found a great
site for up to date information from a wonderful group who are birght
strong and most important KIND and SUPPORTIVE.

We can all relate to your fear and sadness - but believe me it does get
better. It is a difficult and often you will feel like you are on a emotional
roller coaster, but you will find the inner strength to fight back and beat
this dreadful disease. In the beginning I was so frightened but that fear
made me serch and search again and again. Never give up seeking additional
information - this action saved me. You have found many friends here
who will always help.

Best wishes on the 5th and please let us know how Sue is.

Jean

Bev · 11-26-2006, 09:03 PM

Hi Kevin.

Welcome. You're doing the right thing. It takes a long time to absorb all this knowledge. If you randomly look at the internet, you see scary things that may not apply. Pre-surgery was the worst for me, thinking I was doomed. It gets better.

I had my own surgery delay. I was in the hospital, prepped and ready to go and they realized they didn't have the nuclear medicine to do the sentinel node biopsy. Changed hospitals after that.

Will you be doing sentinel node? Not to scare you, but the tumor size can be different from what the docs expect.

Best of luck. It's a tough road, but you will do it. No reason to think you'll not live happily ever after at this point. BB

Heart Sutra · 11-27-2006, 04:11 PM

Thank you all for the welcome and your compassion.

Yes, sentinel node biopsy is also part of the plan, that is the news we await.

I'm glad Sue doesn't spend too much time on the internet looking this up, because she doesn't have the time to sift through all the garbage, the doom and gloom, and the ultra-negative that so readily presents itself. The realism takes longer to find for some reason. I find it for her.
Some of you on this site have pointed out the more realistic path, and I am especially grateful to you. Your words are so valuable.

It was our great fortune to have found you in the midst.

If any of you think of something that escaped the first moment, or that you'd like to add, please do... it is of such great service.
Thank you. You make it easier.

---Kevin and Sue---

lindyjo · 11-27-2006, 06:32 PM

Kevin & Sue,

I am fairly new to this website, but have found it to be a great support system. I was diagnosed in March with Stage IIIb Her-2 + cancer with 7 of 13 positive nodes, and was scared to death by alot of the information I read. You just have to sift through it and use reliable sources for information. Ask alot of questions of your medical team and take it day by day. There will be some tough days, but together you can get through it. I have met some wonderful people going through all this. It's not the way I would choose to make new friends, but you have to find the good in each day and move forward. So many strangers from my church and through my work and just from things like going to the store have opened their arms to me. It's a scary time, but have faith and you will get through it. We're all here for you. Keep us posted on how things are going.
Lindyjo

Sheila · 11-27-2006, 09:39 PM

Kevin and Sue
You have come to the right place in this board...we are a team, and care about each member, new and old...., we are rewriting the gloom and doom of bc survivors ...things change daily...there is a cure in our life, I just know it! Always think positive...and if that doesn't work, eat chocolate...seems to help me. Never be afraid to ask any question, there are many here with th answer you are looking for...never be afraid to get a second opinion...if something doesn't seem right...see another Dr for a different point of view....some are not specialists in breast cancer oncology, and may need to be tuned up...I am always bringing in articles to my oncologist, or asking about a new drug....if they get offended, find another Dr. Knowledge is power in this disease, learn all you can....dont believe all the horror stories...there are many of us on this board who are rewriting history in the breast cancer statistics....Sue will be one too!
Good luck on the 5th....I will keep you both in my prayers.

lightsteve · 11-28-2006, 11:43 AM

Kevin and Sue:

we are wishing you the best of luck. Stressful times, for sure. My wife and I have been on this road for 3 years and while it has been difficult it has also brought us closer together. Like you, I am the one doing the prowling through the internet and other resources. This gives me a role as advocate and simplifies things for Sarah, if only slightly. It works for us. I recommend the book Breast Cancer Husband by Marc Silver, it is very amusing and completely distinct in its perspective from the spouse/partner point of view.

Steve

Vanessa · 11-28-2006, 09:29 PM

Welcome to the board. I am so sorry that you and Sue are going through this difficult time. I first found out I had bc in April of this year. It has been a hard road and this site has given me some hope. I hope it does the same for you and Sue. Best wishes.

VirginiaGirl · 11-29-2006, 04:27 AM

Dear Kevin & Sue,
Everyone's replies have said it all. My family & I found after my dx that researching info on the net was a lifesaver - though definitely scarely, it gave me a greater sense of control to be able to get info. It made me realize how little I had known about my dad's stomach cancer 11 years ago, and made me very grateful for the ease of the net, even though you have to sift through a lot. When I start feeling overwhelmed by it, I turn it off and come back another day! I guess that's true for all the feelings, as well. Each day will be different, and there's no telling why you feel despair one day and hopeful and positive the next! Sue is a lucky lady to have you on her team. Keep in touch.
Peace

tousled1 · 11-29-2006, 06:49 AM

Kevin,

Sue is very lucky that she has such a concerned, loving partner. When you first hear the words "You have cancer" your heart just drops. You have come to the right place. Here on this board you will find support, compassion, and most importantly a wealth of first hand experience. I'm truly sorry that you have to be here and wish you and Sue the best. I will keep you both in my prayers.

Heart Sutra · 11-30-2006, 05:40 PM

Thank you all so much. I wish I could thank each of you one at a time, but the list grew so fast! How fortunate are we to have that complaint? Please know that every word has been a help, every thought has been so appreciated. Thank you for your time and compassion. It is truly impressive and humbling.

As the surgery date gets closer, anxiety is getting higher.

Suddenly all the "what ifs" come to the surface. We're both pretty grounded, and we take our realism seriously (ha!) but those moments of doubt do come. Pretty normal response I guess. Sue talks about not becoming a schedule. What she means is having the anxiety of tests becoming a dominant part of life. I imagine that for a time it can't be avoided, I can also see the day when it won't rule us.
We are starting to feel like we know some of you, and both of us are always happy when we hear from you. Keep talking us through this, you help so much.

We've heard such good advice from all of you here, and we know we're not alone. It is a blessing to have found this site.
P.S. for those of you who think we're married... only in the way that counts, heart and soul, complete.

---Kevin and Sue---