Just Diagnosed HER2+ Stage 4

Brina · 12-05-2010, 04:59 PM

Hi, I have never been on a site such as this.

I was just recently diagnosed with HER2+ stage 4 breast cancer. It has spread to my hips, back of my ribs on right side and my right colar bone. I am terrified!

I am set to start herceptin and to have 6 rounds of chemo, Port going in on Dec 13th.

I don't know what to expect!

Midwest Alice · 12-05-2010, 05:22 PM

Brina, Welcome, I am so sorry you have to deal with BC.

You will find this is a place that will make your walk better. You will be very thankful to have a port. It makes treatment soooooooooooooo much easier so they don't have to stick your vains with treatment. Ask for a topical cream that numbs the skin over your port. You put it on an hour before treatment and cover it with a bandaid. Then you don't feel the port when they axcess it. I don't use the cream any more I just put up with the pain, .... its not too bad.
Herceptin is a blessing. The chemo may make you tired. What are you taking?

Hang in there. There is life after stage IV. We have many members who are living productive happy lives.

Brina · 12-05-2010, 05:32 PM

Hi Alice,
This is still all so new to me that I am not even sure of the "coctail" they are making for me as of yet. I have a CT scan in the morning, from colar bone to pelivs they did an MRI last week but only of the breast which is because at that time they did not know I failed the bone scan.
I have a great Oncologist. I cant say much for my regular GP who ignored my concerns about my lump for 5 yrs.
I am only 40 Alice, I was hoping to have a baby this year and now all of that is gone. I am truly lost right now.

Barbara H. · 12-05-2010, 07:19 PM

Hi Alice,
There is much more hope for HER2 stage 4 patients now. I progressed to stage 4 in May, 2004. I am still here and doing well. I still work full time and have a life. I can imagine that you are also upset because you were planning to have a child. Nevertheless, we still do not know what new research will bring. My thoughts are with you. Just know that there are many treatments that will help you, and that you do have the possibility of living a long life. Make sure that you are being treated by a doctor who specializes in breast oncology.
Kind regards,
Barbara H.

ElaineM · 12-05-2010, 08:37 PM

Welcome aboard the her2 train Brina.
It is not a train that anyone wants to ride, but it is a doable trip even though it gets a little bumpy sometimes. The ride is a little bumpy for you now, but maybe the ride will calm down once all the details are known and the route has been decided.
I was diagnosed in January, 1999, but I am still here making trouble for my doctors. Many others who were diagnosed before me are still alive and kicking too.
The port is an excellent idea, so is the numbing cream.
I love my port. It is one of my most cherished possessions. I am very protective of my port. Nobody gets near it, except for medical reasons. I use mine for regular blood tests too. No more arm stuff for me !!!!!!!
I guess you could say I am also very protective of my veins too.
Take good care of yourself. Keep putting one foot in front of the other. I have my fingers crossed for you.

Catherine · 12-05-2010, 10:07 PM

Briana,

You have come to the right spot. This site has wonderful people who are willing to share their knowledge and personal experiences with BC...especially the HER2+ kind. I am sorry that you have to join our "club." Do all you can to learn about your DX. Take the same sprial notebook with you to all appointments and make notes. When you are at home log your questions in the notebook and then you can fill in the Oncologists answers on your next appointment. Some offices have counsleors, chemo classes, etc. Take advantage of all they offer you. Have someone go with you to your appointments. Maybe consider an antidepressant and maybe something like ativan to keep you calm during treatment. Get as much rest as you can, but walk and also get some exercise.

All my best to you. It is not fun, but you can do it. Believe in yourself and breath alot.

Catherine

Soccermom · 12-05-2010, 11:00 PM

Brina,
one thing you may want to ask about would be to do an egg retrieval prior to chemo. I realize that you are just starting this journey and not thinking about having a child at the moment, but just to keep your options open for later on you may want to inquire about this,

Warmly,
Marcia

BonnieR · 12-05-2010, 11:26 PM

Of course you are terrified. We all know what that feels like. You have come to the right place for understanding and support. As you get specifics, it would help if you made a profile that will show at your signature. The "user CP" link will help with that. Meanwhile, you have had good suggestions already. Esp about keeping good notes of questions and replies from the docs. Avail yourself of any support groups or counselors.
Ask us anything.
And keep the faith.

KDR · 12-06-2010, 07:15 AM

Hi, Brina
I was diagnosed Stage IV in June. It's devastating, I know. You are not alone, though, ok...we all understand what you are feeling and will help you and share what we know. You CAN ask about egg retrieval. I had my first and only daughter at 42 (pregnant naturally at 41). I feel like this disease came on like a thief in the night. One day in April I found a lump and I just knew. Never expected this, but this is what I have. On and up from here. Where are you located?

Mary L · 12-06-2010, 09:16 AM

Hi Brina. So sorry you had to join this club but you will feel so much better having the support this group can give you. I too am a her2 patient. I have IBC stage IIIB. Herceptin saved my life and I am here 7 years after diag. I really think talking about your fears and getting good advice from people who have been there helps so much. Keep us posted. Best wishes and you have my prayers. Mary L

Debbie L. · 12-06-2010, 10:03 AM

Brina, so sorry for why you're here. As you can see, we do welcome you and we hope that as you become acquainted with cancer, you'll find support here. The other part of that is that as you become acquainted with cancer, you'll be able to OFFER support here and that will be satisfying.

It sounds like you're still in the discovery stage of diagnosis, with CT results still pending?

I know this is such a scary thing to have come at you, out of the blue. But from what you've said so far, it does not sound like there is anything urgent or immediately life-threatening. If the cancer is in your bones, it is likely that it's a hormone positive cancer (that's good news). If it's not anywhere else and causing no severe symptoms, some providers might consider beginning your treatment with Herceptin or a drug similar to it, and an endocrine treatment, rather than chemo, at this time. Do you have your pathology report, which should give that information about ERPR and other details?

It's wonderful that you have an oncologist who you like and trust. Did he (she?) encourage you to get a 2nd opinion at a Comprehensive Cancer Center?
http://cancercenters.cancer.gov/canc...ters-list.html
That's always a good idea, and does not reflect on your respect and trust of your local provider in any way. It's just good medicine, to make sure there are not other options that are being missed, and also to provide that all-important peace of mind. It's likely that the 2nd opinion treatment recommendation will be the same or very similar, but that doesn't mean it's not of benefit. If you get that expert second opinion right now, before you set upon your treatment path, you will never second-guess yourself later and will know you're doing all you can to live with this in the best way possible.

Debbie Laxague

tricia keegan · 12-06-2010, 01:41 PM

Hi from me too Brina and welcome, I'm sure you'll gain courage as you go forward in your diagnosis reading from some of the very brave ladies here who prove daily, there is still life after stage iv!
My best wishes to you

Lori R · 12-07-2010, 06:04 AM

Brina,
We all know that horrible sinking feeling when you receive the news. But...I am so glad you found us. Our merry band of cancer warriors is a wonderful community of incredibly knowledgeable people.

So please, come here frequently for support and encouragement. I was stage IV upon diagnosis and have lived an amazingly active, full, fun life. It is a HUGE mental game, but I know you are up to it.

Please make decisions assuming you are going to be around to enjoy all of the things you had planned for your life. Don't count out being a mom, get those eggs harvested so you can realize that dream.

Never let anyone tell you no. If in doubt come here for reinforcement.

Best of luck and let us know what your cocktail is. Demand an umbrella in it!!!

Hugs....Lori

ginnyg898 · 12-07-2010, 04:36 PM

Hi Brina:

You are definitly in the right place. I was diagnosed with her2+ bc last August and I am currently in neo-adjuvant chemotherapy. When I was first diagnosed I cried a river and felt so much fear. This disease changes your life and you must allow yourself to grieve.

The ladies on this board have provided so much support and answers to my endless questions

I agree with a previous poster's suggestion of keeping a notebook. I have a journal that goes everywhere with me. I keep track of treatments, side effects, things my oncologist and I discuss and general notes on how I am feeling. This is a journey and it helps to get it out.

Best to you...

Sherryg683 · 12-07-2010, 10:49 PM

Hi Brina, I was diagnosed stage IV also. This month I celebrated 5 years of being alive and cancer free since my intial chemo rounds. The chemo is doable and will be over before you know it. Your life will however change and it will take sometime to get use to your new normal, the emotional and physical side of it. You will cry have breakdowns, fight and be fearful...all of which is normal. You have to let yourself go through all this without feeling that you are being weak. There will come a point when you won't be thinking about the cancer every minute of the day and that's when your new "normal" will begin. I had buried myself a thousand times when I finally decided that I was ruining what life I had left. So about 3 years ago, I decided that I was going to try and put all the bad fearful feelings in a "box" and not open it unless I had to. That box opens itself up every now and then, especially around scan time but then I shut the lid back down. It doesn't help to worry all the time. For you, this point may take some time to get to. Like I said, take everything at your own pace and be kind to yourself. ..sherryg

Pam P · 12-08-2010, 05:45 AM

Brina - You've gotten a lot of good advice from the wise women here. Not much more I can add except to add my best wishes for you as you navigate this new terrain. I was diagnosed at stage 3 but in a little over a year bone mets were discovered and they think they were already there but undetectable at initial diagnosis. That was 9 years ago and I'm still living strong. I've had lots of bumps in the road, but have had many mountain top experiences too in these 9 years. One step at a time for me, for you and all of us. There is good treatment, reason for hope, and great knowledge and support on this site. Come here often. Pam

Mary L · 12-08-2010, 07:57 AM

Good Morning Pam. I never realized you had the exact same diag. as I had 7 years ago. You are a 9 year survivor! That is wonderful. The only mets I have had so far were skin mets on the surface of my mastectomy site. I always enjoy reading your posts. Have a wonderful holiday. Mary L