New to Stage 4

Indenial, I am so sorry that you have been diagnosed with bone mets, but you have come to the right place. There are many people here who know exactly what you are going through, and they are very wise, caring and supportive. What you are feeling is normal, but I know it doesn't really help to hear that. There are many treatments available, and many people live for a long time with bone mets. Ignore the statistics. They are based on outdated data. You are not a statistic or a data point. You are an individual.

It is always a shock to get this diagnosis. Remember, don't ever think that you did something to cause this. You did not!!

There are some threads that you will find helpful. The Bone Mets Thread is a great place to begin. The people on that thread will provide you with answers to questions you have about treatment options for your diagnosis. When will you meet with your oncologist to discuss a treatment plan? Once you have a plan in place, you will begin to feel better. In the meantime, cry, scream, whine, hug your family members, do whatever you need to.

We are all here to help you.

Lynne

Indenial, take a deep breath. Then take another. While you may or may not want to remove the rib, if it is your only met, they can radiate the met out of existence.

You're in what we call the shock and awe period right after diagnosis. We've all been there, welcome to the club no one wants to join. Once you get used to this and start in with a treatment you will feel better, I promise. It may take some time, but six months from now you'll look back and smile at your today-self.

I had enough bone mets to break my back, yet three years later I'm still on my first treatment. Other ladies have been on their first treatment longer than that. There are dozens of treatments. When I had my first appointment after diagnosis my onc told me "don't give away your stuff". How right he was. Bear that in mind.

Take someone with you to your appointment on Monday. Their job is to take notes. Take a list of your questions. Don't be surprised if your onc won't give you a life expectancy. None of us know how we will respond to treatment, so we don't know how long we will last.

And may I reiterate what Lynne said for everyone here. THIS IS NOT YOUR FAULT!!! It's the result of BAD LUCK!! (and a cell that for some unknown reason decided to go haywire)

indenial,

I'm sorry that you find yourself here, but welcome. The early days of an MBC diagnosis are rough. I have/had a single met to my upper femur. I had rads to kill it off (I was not in pain). That was almost 5 years ago and I have remained NED. Here are two threads you might be interested in:

https://community.breastcancer.org/forum/8/topics/...

https://community.breastcancer.org/forum/8/topics/...

I'll be honest I still do have some very bad days here and there, when I feel the panic, dread and despair creep in. But for the most part I am feeling fairly happy most days, continue to work, ski, go to concerts ect. Just remember the mantra "Today I am OK" and go with it. It makes a big difference and it does get easier...

Indenial, I would be very pissed if I was in your shoes. Looking at your profile, dx, it appears you should of been home free. Sneaky rat bastered Cancer.

I never heard of getting a rib removed, but it certainly is worth asking. Ladies with single bone mets can & do live longer than organ mets. One of the gals that posts on another thread was in a clinical trial for excatly that. ( single bone met ) If I can find the name of the trial, I will let you know.

I was dx with liver mets 2 months ago. Not a shock, Drs. Had been honest about my poor prognois. I feel like I have been preparing mentally for 2 1/2 years. It still is a nightmare. Being able to rant here, with ladies that get it helps. I have a lot of friends & family that are very supportive. It is all exhausting, for me dealing with everyone good wishes, and " just stay positive & YA might be cured" drives me bonkers. Also the sad pathetic looks. Ok, sorry if I am Debbie Downer......it would be easier if I was not bald, again.

indenial,

Try not to spend too much time dwelling on past treatment, or what might have been different if only....

The reality is that 25-30% of those diagnosed at an earlier stage develop mets. The disease has no respect for age, or prior tx. It happens to us at all ages and stages of our lives, despite our best efforts to control it.

Although you're overwhelmed right now Istrongly recommend a second opinion at the best facility you can get to. It will really help with treatment decisions and give you more confidence in your tx plan. As for aggressive tx, more is not always better. Some of us with limited bone mets who are ER+ have done very well on anti-hormonals alone. I had rads to my femur and an AI, no aggressive chemo , or any chemo at all for that matter. I live an almost normal life. However, we are all different and a second opinion will be of great help and give you confidence in whatever tx is proposed.Take care.

Indenial, You have received lots of good advice here. I know it can be overwhelming to be where you are right now. It is important to do what others have said, don't let the "what ifs" and ""if onlys" and "I should haves" take over your thoughts. You did everything right. The past is the past. The future is still ahead for you. If you have any doubts about the treatment plan your onc recommends, please get a second opinion. You will feel better about the treatment if you do that. Is there a large cancer center near you? Even if you go there for a second opinion, you do not have to continue to go to that facility.

Lynne

To answer your question about ovarian suppression, the shots and the surgery are equivalent and will behave equivalently. From a prognosis point of view it doesn't matter which you do. You'll also have the same side-effects.

So if you're not ready for the OR, have the shots. It's an easy surgery, but you don't have to have it until you're ready. I took the shots for almost 5 years before I could face the OR.

And to answer your question about stats, they are (a) outdated and (b) include everyone. Triple negative patients don't do as well as women with ER+ or HER2+. And back when those stats were generated, HER2+ patients did really badly. That was before Herceptin and Perjeta came on line. New drugs are coming along all the time. Most of the statistics are from women diagnosed and treated 10+ years ago. In addition, the number you read is usually a median survival rate. That means half the women did better. A lot of them significantly better.

Hang in there!

Indenial, I'm sorry you are going through this. I was diagnosed with stage iv two months ago, and completely understand how you feel.

Took me 2 long months to start treatment (I changed oncologists twice and in between when up to Boston for a consultation, got infusion port back).

Anxiety, sadness, frustration took over my mind during that wait. It does get better once you figure out a plan and begin treatment! Make sure you are comfortable with that plan.

It does help to get a second opinion /consultation, if at all possible, at large cancer center with a Dr that focuses on breast cancer/women's cancers.

Hang in there, as you can see on this blog, there's hope. ...

indenial - you are under no obligation to tell anyone anything. Some people decide to keep it very private, and some people decide to tell everyone. Although I'm normally a very private person I've made the decision to be as open about this as I can be. At work, however, I try to just keep it to "I'm in treatment" and I de-emphasize the Stage IV part. I had such an outpouring of love and concern in the beginning that I never expected, and it really helped. Now that I'm doing well on the drugs I'm on, though, I think people don't know how to approach the subject. I'm trying to get back to being just me and it is sometimes frustrating to be out with friends and trying to forget it all for awhile and everyone keeps asking how you are. Still, I've never really regretted being open about it. I suggest that you tell only those who immediately need to know for now, at least one person close to you. Take time to decide how much you want to tell your wider circle.

Who to tell and when to tell is a very personal decision. Over the course of almost 5 years, I have let everyone in my life know about my situation. Like shutterbug, I received an outpouring of support . I knew my family would be supportive, so telling them was never an issue. My colleagues at work are educated and compassionate (we are educators), so though surprised, they have been great. By being open, I control the information. No rumors or gossip. Everyone knows they can openly ask me questions . As it's been almost 5 years, it's now pretty much a non-issue.
My one caution is to know your audience. If you know that someone won't be supportive and that telling them will cause more stress, leave them out of the loop!

indenial, when I was initially diagnosed with breast cancer, they did a PET scan. There was a sort of a spot on the iliac wing that didn't look like much. Everyone dismissed it. I had the whole treatment magilla, followed by four years of tamoxifen. Just as I was filling the prescription for the firth year, my lumbar spine cracked. Second PET shows cancer in the spine, plus now that little spot that wasn't a spot on the iliac wing lights up.

Maybe it was cancer all along. Maybe it's just a place of weakness where the cancer managed to get a foothold later. Who knows. Would we have treated it any differently? Probably not -- I was on tamoxifen. Would I have had three more years of worry? Yes. And I could do without that, for sure. I'm much happier that I lived without the knowledge, if indeed I had a met (or two).

In the three years I've been having PETs, there are always "things that light up and when we look at the previous scan oh yes maybe it was there before". You do need a PET now, to make sure you know exactly what you are dealing with.

Please try to live in the present and not worry about the past. We can't go back, we can only go forward. If you feel a crisis of confidence in your doctors that's another thing. If so you should find a new doc. I third the idea of a second opinion, if only to make you feel more at ease.

Dear indenial (great nick btw)

İt takes about a year to suck in the news, with or without the mood meds, preferably with them. Than it's your new normal life.. The weirdest is that your closest ones forget you have cancer as long as you look and act normal.. So use the cancer caed so that they never will take you for granted and save the last bit of life energy left in you for as long as possible. Trust the experience. I lost a very dear friend to it! Her close circle sucked up her energy and she passed away just on her secınd line of treatment! This is my two cents for you ..

Hugs

Ebru