Long term survivors

Skip · 02-15-2010, 06:37 AM

Hello everyone I'm in need of some help and information and was directed to this group from the caregivers corner.

My wife Florence was Dx last November with stage 4 grade 3 her2+ IDC BC. A CT scan showed it had spread to her liver and a biopsy confirmed it was her BC.Her MRI and bone scan were clean.

She thinks because its spread to her liver, it spread all over her body and the treatments (T&H ) are not going to work for her. I've showed her the current info on Herceptin and how many life's it has saved, but she still thinks it to late for it to do any good for her.

I'm asking anyone who has a similar Dx to please let her know its not over for her. I'm trying to get her to think positive and fight this. I told her to "get mad" and fight. I can see it in her eyes she thinks shes not going to be around long, maybe a year or two. I know this is not true any more.

jml · 02-15-2010, 07:05 AM

Hello~
Sorry to have to welcome you here, but you've definitely come to the right place. Our community here is among the most well educated, informed, respected groups out there, and you'll soon find out why.
I am an 8yr (in May) Stage IV Survivor, surviving and thriving, still fighting, but managing to have a pretty happy life.It gets bumpy and complicated at times, but you just hang on and ride out the rough spots.
I've had liver mets since my primary dx, with the disease progressing to "innumerable,immeasureable" lesions at one time. We were able to knock the disease back with Taxol/Herceptin, and I enjoyed a full year of NED. Since then, it's a matter of treating this disease like a chronic one, keeping tabs on it with PET scans, treating when necessary and enjoying treatment breaks when they come.
This initial period is among the hardest - adjusting to life living with BC. But the treatments now are pretty manageable and you will gain confidence as you move through this.Take small bites, one day at a time, one treatment at a time.
This is a horrible, insidious disease and we have all endured so much, but Florence can do it, as we have, and she's blessed to have you by her side to cheer & encourage her.
You're already on the right track - getting educated about treatment options, trusting the guidance of your docs, but don't be afraid to question or offer suggestions.
Please don't hesitate to post questions here as often as you need, even if it's just for a little encouragement or a kick in the pants to get going!

Keep the Faith~

Jessica

Lori R · 02-15-2010, 07:54 AM

Dear Skip,
I believe I posted earlier so I might be a "repeat" success story

I fully know what Florence is dealing with. When I found out that I had a liver met, I called the nurses at my Dr.s in a state of panic. I asked them if the cancer was running rampant through my entire body.

So....that is why we take chemo, kill the circulating cancer cells. If it would provide Florence with reassurance, she can take a circulating tumor cell test that while it isn't widely used supposedly can measure the number of circulating cancer cells.

As you can see from my detailed history, I had one met and have been managing the situation for almost 2 1/2 years. Please remind Florence that during that brief period, the options have increased dramatically. I have many more options in my hip pocket that I am confident will carry me through until the next big break through.

Would florence be willing to come to the site and share her deepest darkest angst? This really is a place where people understand.

Wishing all the best for you and Florence....Hugs....Lori

SoCalGal · 02-15-2010, 11:00 AM

Cancer is a mind-game. Fear is the worst aspect of this dis-ease. And fear is one of our natural emotions, so it is a natural reaction to any threatening situation (our emotions: mad, glad, sad & afraid).

It sounds like Florence has had about 3 months to "come to terms" with her health. In many ways, it is coming to terms with life. And right around the holidays, this kind of news can trigger tons of grief. 3 months is not that long, especially if one is not getting professional support with the journey. Maybe just speaking with another survivor would help. You can PM me your number and I will be happy to call her.

Survival really boils down to living life each day. Cliche yet true. The present moment. That's really all any of us can do. Forcing yourself to be present. In my opinion, it's our PROCESS which holds great value, to ourselves, our loved-ones and friends. The PRODUCT - the end result is not as important as the PROCESS - HOW we handle each day. What we do with the good moments we have. Want to make time disappear? Engage in any creative activity such as art, gardening, cooking, etc. Suddenly hours have gone by. Being fully engaged in creativity provides the body with opportunity to heal. Start each day with writing (3-5) gratitude's in a journal. Before you get out of bed, "I am grateful for...". Observe how this simple practice can change your whole perspective after only a week.

Ways to find Grace. Some days it's a hit, others a miss. Hopefully finding ways to stay out of fear. Some of that is just not indulging the mind. I follow a "no worrying after dark" rule. It's an old rule for me, yet I still have to enforce it almost every night.

Facing fear head-on, coming to terms with whatever that means to you, dealing with your estate and other less pleasant activities, sometimes allows for peace of mind for really living your life.

If you're question is, "is it possible to survive Stage 4 cancer" then the answer is yes. If you are looking for proof, there are many here (including me) who can testify.

ElaineM · 02-15-2010, 11:49 AM

Please tell Florence to keep fighting. Keep putting one foot in front of the other and try to stay positive !!!!!!! There are many members on this board who have survived many years with a stage 4 diagnosis-------------even more than 10 years !!!!!!!! Our founder was diagnosed in 1990 !!!!!!! Stage 4 breast cancer patients have an even better chance of long term survival than ever before, because of all the new medicines being developed and approved by the FDA.
Try to think of cancer as a chronic disease rather than a life threatening disease. That helps.
Take care. All the best to you and your wife.

chrisy · 02-15-2010, 11:55 AM

Hi Skip and Florence,

Ha ha, I'm a blabbermouth without borders - I'll read and respond regardless of where you post!

I think I know how Florence feels. I felt exactly the same way when I was diagnosed with "extensive" liver mets. I remember reading (outdated) stats and quoting my husband the average of 18 months. I thought if I fought really hard, I might double that.

Lucky for me I had great oncologists who still haven't given me an expiration date, 5 1/2 years later. They told me then that they were starting to look at it as a chronic condition that for some people could be managed for a long time much like diabetes.

This is becoming increasingly the case with Her2+ BC, and since then I even hear CREDIBLE rumors of cure more frequently.

I've lived most of that time (after the initial 6 cycles of chemo) like a pretty much normal person - with maybe a greater appreciation for the miracle. Although I've had a couple of recurrences, I'm currently well into my second round of "no evidence of disease". While I hope it will last forever, if I have to suit up again with a different weapon, so be it.

I look at Florence's current "stats" and see clean, clean, clean, oh, some liver mets -well let's whack them with chemo and see how they like that.

Everyone who has posted so far is right. The chemo can work. It's possible for the disease to be managed. You can live life and fight cancer at the same time. And it is definitely a mind game.

You guys can do it, and like Flori, I'd be happy to talk anytime.

It takes time to adjust, so be gentle with yourselves. At our first visit to my best oncologist, my husband asked "how do people live (cope emotionally) with this????" Her answer was: "You just do". Simple, but not so easy, huh?

But she was right too.

Carolyns · 02-15-2010, 04:07 PM

I felt the same way 4 years ago when I found out that I had liver mets. Things have changed just like you mentioned. I am a single mom with an 11 year old boy. I still work full time and raise my son. It is tough and scary but I get up every day and put one foot in front of the other.

In the early days I went to a shrink and got myself to the best doctor I could find with plenty of experience with Stage IV girls.

It is not an easy road and everyone has a different path but it can be done.

Carolyn

MJo · 02-16-2010, 08:41 AM

It sound like Florence is blessed with a loving and supportive partner. That's a good thing to have, along with the Herceptin, of course!

Darlene Denise · 02-16-2010, 10:16 AM

Skip: Been there felt those same feelings. Some of her thoughts are controlled by her recent dx and some by the chemo. When I was on Taxol/Carbo/Herceptin I was a total victim and felt nothing but dispair. My husband was beside himself seeing and experiencing my emotional decline. Remember that chemo can be a big reason she is going through this, it chemically alters the brain. The fear of imminent death is very diabilitating. Once she begins hearing that her treatment is working to reduce the liver lesions she will start to feel empowered against the disease. When that happens, lead her here to see others in her same place to give her more empowerment. It is a one step at a time process. Hearing people tell me to be positive etc upset me more than it helped me. This is something she must come to terms with on her own terms. Her feelings are normal. These feelings will change only when she begins to feel safe again. Don't try to rush it or force it. Remind her often you are there for her and will always be there to love and care for her.

MBC steels everything from us and replaces it with fear and anxiety. These new feelings never go away, we just learn to manage them, just like the disease.

Be patient, be kind; she will be back!

Darlene

Lien · 02-16-2010, 12:52 PM

I personally know two women who had liver mets disappear with treatment. So far they haven't returned and one of them is about 8 or 9 years out from diagnosis, the other over 12 years. It is possible to survive, so she might as well acknowledge that. It's tough, but we are all here to support her.

Besides, what's worse than dying from metastatic breast cancer after 2 years or so? It's not having lived during those two years. They can be wonderful. And it's very likely that it will be a lot more than 2 years. I am surprised when I read that someone died that quickly, these days. Things are changing fast.

Give Florence a great big hug and tell her that we will help her through this. All she has to do is read our posts. And if she wants us to talk to her, let us know, and we will inundate her with posts. She (and you, Skip) just acquired a new family who will love and support her unconditionally.

Warm hugs

Jacqueline

Westcoastgirl · 02-16-2010, 01:24 PM

Hi Skip, glad to see you over here and as usual these wonderful women have come to share their stories. You have found your way to an absolutely great site. These are just a few of all the women on here that have had mets but fought and are here years and years later to tell their stories. Some are simply better and have moved on from this site. Keep up the support and your wife will come to grips with her bc. She will carry on and you will find balance and joy once again. The beginning is always hard but after a while she will become an old hand at it, knowing the nurses, feeling comfortable with her onc, and once again feeling like she has much to live for. Attitude carries you a long ways. She is lucky to have you with her and the fact that you are persistent and caring will carry the day. All the best, Carolyn

Jackie07 · 02-16-2010, 04:33 PM

Rich had posted several articles about liver mets. Thought I'd list the link here:

http://her2support.org/vbulletin/sho...ght=liver+mets

There's another thread entitled 'long-time survivor' where many members' treatment history can be located.

Please let Florence know that Her2 + breast cancer is now one of the most treatable breast cancers because of Herceptin. It has been the focal attention of breast cancer research for the past 10 years. Several new members also have reported successful stories of vaccine trials.

Having cancer is not fun. I remember the fear and the depression I had experienced vividly. We are fortunate to be living in this day and age when many cancers are now treated as chronic illnesses. We've also got many wonderful care-givers frequent the site. I'm always thankful that we have a strong Her2 family here to support one another.

ps. About the cancer cells spreading all over - liver is the 'detox' site of our body. Cancer cells are often found there first when they broke away from the original tumor site. The lymph nodes and the liver are actually part of the defense system to make sure 'foreign objects' such as cancer cells can be trapped and kept away from 'spreading all over'. There could be some 'circulating cells' around and that's why chemo is used to destroy those cells 'systematically'.