new here, and really, really scared

[PatientSpirit]

I was dx with invasive ductal carcinoma of the left breast in April 2002;
Her 2 + and ER-. I went in for a lumpectomy and woke up without a breast
on 4/24/02, as in the OR the tumor was found to be 8 cm, and 5 out of 14
lymph nodes positive. Two years ago I was considered NED. My sister even
wrote a book with a chapter devoted to breast cancer, as my second sister
was dx 10 months after me. www.invisiblenomore.com

Last week, after a six-month healthy blood draw and check-up, I was told my
protein, liver values, etc., etc., were cause for concern. Since last
Thursday I have had multiple further tests. Yesterday I got the verdict. I
am not a breast cancer survivor. I now an stage 4. It is throughout my
body; particularly my liver, bones and elsewhere (elsewhere yet to be
determined). I was told 18 months, or if I am lucky 5 years with chemo.
But, five years of WHAT?

I am really, really scared. Have never felt so frozen and afraid of
anything in my life. I am scared to death. I don't want to die.

Thank you for listening.

Lynn in Michigan

[Becky]

Dear Lynn


I am sure your oncologist and you will come up with a good chemo plan of attack that will include Herceptin (and maybe Avastin too). Herceptin really gives an extra punch to Her2+ cancer in conjunction with chemo (like a taxane or navelbine+xeloda). Since it is also in the bones, I am sure you will also get Zometa.

If a biopsy on the new tumors is possible, you should have the tumor re-evaluated because sometimes an ER- tumor can turn positive. If this is the case, an antihormonal will help too.

Many women on this board are living high quality of life and living with bc mets for many, many years. You are not alone here. We can be here for you.

Kindest regards

Becky

PS - remember to get a brain MRI every six months as mets to the brain can be dealt with easiest when detected early

Hi Lynn,
I am not at my regular computer so I can't log in with my user name, but I felt I had respond to your post as many others will. First of all no one can say how long you have and many with stage 4 breast cancer live years. Unless you only have weeks I would find an oncologist who does not tell you how long you have. I have been stage 4 since May 04 and still teach 3rd grade full time. In 2004 I had it everywhere including a 3cm tumor in my brain. It no longer shows up on pet scans except in the bones. For me, Herceptin alone got me that far. I am currently dealing with the bone issue and had to add Navelbine.

You are a survivor as long as you are alive. I also thought I wasn't when I progessed to stage 4, but my beliefs were corrected at by a social worker at the cancer center where I am treated.

Again, it is important that you find someone treating you that gives you hope. I noticed that you live in Michigan. I would go to the University of Michigan for a second opinion. If it is not too far I would go for treatment. My sister, who is at high risk because of me, has consulted there and is very pleased with the services she has received there.

You have come to the right place to receive hope, information, and support. Good luck. You will learn to live with this new fork in the road and yes, you will also have a life.

Best wishes,
Barbara H.

[RhondaH]

I'm in Grand Rapids. The FOUNDER of this board had brain 8 years after being Stage 1 (Stage 1 1990- Stage 4 1998...I believe these dates are right) and is STILL a survivor and you are and will be to. The Thurs Herceptin group I get Herceptin w/ consists of 2 Stage 4 (and have been for several years). Not only do you have Herceptin available to you, but NOW you can get Tykerb on a compassionate basis if Herceptin doesn't work...in a stupid way...your LUCKY to be HER2+. If I can be of any help, please don't hesitate to ask and READ all the Stage 4 survival stories on the board (as well as know that there are a lot that are NOT on the board) AND understand that treatment is CONSTANTLY changing so a lot can change in those 5 years. Take care and God bless.

Rhonda

PS...My onc is Mark Campbell of Cancer and Hematology and he is the head of all of Spectrum Health cancer facilities...he is AWESOME.

[chrisy]

Oh Lynn, I'm so sorry that you are having to go through this - I know how scary it is, especially after hoping/expecting the beast to be gone forever! It's not over. Don't give up hope.
You are not alone. And so far you ARE a survivor - you just have some more battles to fight. And you will fight them.
Don't let anybody put a time limit on you - especially before you have even begun treatment! Nobody knows how many days, months, or years you have! There is so much hope - including many on this board who have beaten the beast again and again and are SURVIVING stage IV disease long past their "expiration" dates. I hate it when they try to take away our hope!
There are many treatments available, and new research emerging daily on targeting Her2 as well as other pathways. Things are changing, and as some on this board like to say, "we are writing the new story"

Some advice - get yourself to the BEST oncologist you can find for a second opinion; someone who is current, specializes in your situation, and most importantly, who you trust and who will join in the fight with you.
Second, get as much information as you can - this site is full of experts and you can get a lot of information here alone!
Finally, anything that you read that is dated before the past 5 years is ancient history - especially statistics!

Don't give up.
Hugs and prayers
Chris

[chrisy]

Lynn,
I just reread your post (now that I'm off my soapbox about not letting people steal your hope!). I too asked myself "XX years of what?". I assumed that you get chemo and it makes you sick, and then you just get sicker and sicker then you die. I thought "why would anyone even bother"

The treatment is not worse than the disease, and treatment goals for Stage IV include maintaining a reasonable quality of life. You need to keep up your strength to continue the fight. There are very effective chemos which can be tolerated very well. That's not even talking about Herceptin and other "targeted" therapies that hit the cancer cells without killing the good guys. There are side effects, and risks, but manageable.

You can feel good again, and live your life. There will be struggles, but hey, there are always struggles - this will definitely help keep things in perspective!

Chris

[Kim in CA]

Dear Lynn,

I just realized as I was reading your post that it was five years ago this month that I became a stage IV. I too had gone for a routine 6 month blood draw and my tumor markers were elevated. It really didn't register with me that I could be in trouble because just 4 yrs earlier I had had what was thought to be the Mother of all treatments (mastectomy, 4 cycles of AC, followed by high dose chemo with stem cell rescue, then 6 weeks radiation) I really thought I was cured. Anyway, my cancer was back big time, spread throughout my liver.

I too was told that the average survival for metastatic cancer was about 18 months. I have had my ups and downs, but overall my quality of life has been excellent. I have been on Herceptin only for 3 yrs. now. I did have Gamma Knife for a single brain lesion last summer, but I only missed about 3 days of riding, and did an endurance ride just a couple of weeks later.

In fact, when I think about it, in many ways my life is better. I am doing things that I just used to think about doing "some day". Each day certainly means more to me than ever before. So just remember, nobody knows how much time any of us have. Just take one day at a time and set little goals for yourself, and reward yourself bigtime whenever you feel like it!

You just hang in there and remember, we Her2 gals are making history and changing the face of metastatic disease.

Kim in CA

[Sheila]

Lynn
Like the others have said, don't give up hope...I have been stage IV for 3 years now, a 4 1/2 year survivor.....we all have our scared moments and our ups and downs, but my good days far outnumber the bad....I look at life differently now, I don't take anything for granted, I take the time to do the things I have always put off....and I am determined to be around for plenty of time.....statistics are just that....we on this board are beating statistics every day...and we wil keep on beating them. Feel free to vent here, you will get more love and support than you know what to do with...I have!!!!!!!!!!!

[PatientSpirit]

Thank you, each and every one. I am feeling a little less discouraged today. Have an appt with my oncologist this morning, then to the hospital for cardiac exam to see if it went there, too. Tomorrow I have my first PET scan.

As to your questions, I work for a consulting company out of Chicago, but live in Berrien Springs, MI. In August I am to be heading up a new project in Grand Haven. I hope I get to meet some of you Michigan folks. I am worried I will be too sick to take this wonderful assignment, though.

Lynn (aka PatientSpirit)

[RhondaH]

PLEASE, PLEASE, PLEASE...tell me that you are NOT getting treatment in St. Joseph, but are getting it out of Chicago? I grew up in Coloma and incidentally have been coming down every weekend to clean out my dads house as he passed away last year (the day before my 3rd chemo) maybe we can get together one of these weekends and while I sold the cottage on Paw Paw Lake (EVERYONE on the lake is from Chicago as my brother and sister also are...Naperville and Palos Heights) and I'm planning a weekend to Chicago w/ my son Tony next month AFTER my last Herceptin. If you are up to it TAKE the assignment...you NEED to live your life, BUT also do what it takes to take care of you. This is the BEST group you will ever find. If you need anything, we're here for you. Take care and God bless.

Rhonda

[Sheila]

Lynn

I agree with Rhonda, you would be better off to get treatment in Chicago or elsewhere other that Coloma, St Joe area....I lived in St Joe for a year and have family in Perry and Grand Blanc.....the medical there is scary to say the least.
Keep positive and live your life...we all have to!

[lu ann]

Dear Lynn,

Two years ago I was feeling alot like you. I was severerly depressed and thought I would have a lousy quality of life if I took chemo. It has been almost 2 1/2 years since dx. of recurrance and I am feeling good, physically, mentally, and emotionally. I do get some help with meds, but If that is what it takes, why not?

None of us know how many days we have left on this earth. We just have to take a day at a time, stopping to smell the roses.

I have met so many on this board who are living with stable stage 4 disease. It can be done. Surround yourself with things and people that are optomistic. Don't let others negativity drag you down. I know it is sometimes easier said then done, but all we can do is try our best.

I don't know what you believe about the after life, but that is what has kept me going, knowing that this is not all there is. When I leave this world I will miss nothing, as Heaven is more spectacular then I can ever imagine.

I do feel sad at times, but this is all normal.

Our families and friends might not be able to give us the support we need, so feel free to come on board and get the help you need from us. We are here for each other.

Take care and God Bless You.
Lu Ann

[IRENE FROM TAMPA]

PATIENT SPIRIT - I like that Lynn

Just wanted to let you know that I was diagonosed in 1996 and I am still here and enjoying every day to it's fullest. I am a person that ask's tons of questions and want to know everything about what's going on in me, but I draw the line at hearing someone say to me that I only have so many years to live. "five years to live with chemo" - how do they possibly know that since everyday something new is being developed.

I have to say that I have had many recurrences/surgeries/stem cell transplant, etc. but am still here to tell you about them and luckily have tolerated them all very well.

I agree with the ladies, get another opinion and prepare to LIVE, NOT DIE.

The best of luck to you Lynn.

[lisahammo]

Hi Lynn

I was first dx in Aug, 2003, with a recurrence to the liver in July, 2004. I am currently having my third lot of chemo in 2 1/2 years. In all that time, I have never vomitted. Yes, I get tired, but I was dreading heaving into the toilet bowl. It has never happened. My onc is fantastic, and makes sure that I am never sick.

When I was told I had a recurrence, I was devastated, of course. I truly thought I had about 3 months to live. It is now 2 years later, and you would not know I was sick (apart from no hair!). People are constantly amazed when I tell them how much chemo I have had. I really believe that it helps NOT to know what the prognosis is. Otherwise, I feel, you will just sit and wait for that moment to come, and not fight the damn thing.

I agree with the others that you must find a good onc, who will listen to you and do what is best for you as an individual, not just follow the "usual" treatment plan, and look at the basic stats.

You are lucky to have found this website. These women are amazing, and give so much support and love. Apart from this inspirational website, I know 2 women at my chemo unit who have been battling this disease for 25 and 15 years. Both with extensive mets at various times. They really do inspire me to keep on fighting. Yes, it is scary, but the alternative is just not acceptable.

Good luck, and take care.

Love Lisa

[Chelee]

Lynn, I know its really hard to believe much after your doctor tells you that you have 18 months. But when I was first DX I thought if I was lucky I had a week. I was scared out of my mind. You will have good days and bad like all of us. Having this dreaded disease is a nightmare...thats for sure. But get those fists up and get ready to fight.

In the six months that I have been going through this and reading everything I can find...talking to people at my cancer center...visiting these boards...I have learned so much.

There are so many women with Stage IV and they have been handling it and doing great for years. There is one place at my cancer center that has a little shop inside of it for us women. Its to buy wigs, hats, camisoles, and such. They talk to women with bc all day long...and every day! We got to talking one day because I was a bit down...and the women that owns the store told me she knows this one women that has been stage IV for NINE years and is doing great considering all she has been through. Then she went on to tell me about so many other women that come in there.

She gave me more encouragment then my own doctors. But these women really do exist...they really are out there and living life.

We all understand how scared you are. That is very normal. I would be lying if I told you I never get scared...because I do. I have bad days and good days. And so far...believe it or not...I have had MORE good then bad. So will you.

Find yourself a GOOD oncologist....one that is IN YOUR CORNER and wants to see you do good. They ARE out there. And please check in here often and ask all the questions you can think of, we are all here to help you.

Hang in there. Sending you warm & healing thoughts.

Chelee

[Kimberly Lewis]

Hi Lynn, I hope you are encouraged by all these posts - I sure am! It doesn't take much to knock me off my little hope, my Onc. said to me "your prognosis isn't very good" ... and I go into a tailspin. We need to build a sactuary in ourselves. This place is an oasis of hope and courage, one of the few. Take as much as you can carry! kim

[rinaina]

Try to get into one of the best in chicago which is Dr. Jacob Bitran out of Lutheran General Hospital. He is a maverick when it comes to Her2+ mets and has such a passion for her2+ mets. He has saved so many that I know. Please go to Chicago for treatment or at least a consultation with some of the best there.

[fcrcm]

You are a perfect candidate for Herceptin, which I have been on for 8 months. It is very very easy to tolerate. Like you, I have mets throughout my lymph system and in my liver and bones. Herceptin has been like a walk in the park and except for one new bone met, my other tumors have remained stable. Good luck.