Freaked out...am I going to die sooner or do I have some time?

First, it must feel very weird and scary to have a sudden change of diagnosis and plans! I am sorry you are going through this!!

I had chemo prior to surgery-- it felt totally counterintuitive not to cut that tumor out-- but it ended up to be a very good thing. Once the cancer cells have migrated out of your breast, there is less haste to remove the main tumor, and actually leaving it in place allows the treatment effects to be tracked (by the shrinking of the tumor). So if you do not have an effective treatment, it can be switched. (This is a blessing in disguise because people whose tumors are removed have no way to know their chemo is the right one...)

I am sure you will hear from many stage 4 sisters.... but for now I will tell you that I have a number of friends in stage four who are living very well, and have been doing so for *years*. One of my BFs is stage four and she is a professional singer, who is performing. So my guess is that will be you doing well for a long time also, and you are nowhere near dying. One of my other close friends is NED (no evidence of disease) after being diagnosed in stage 4 w/ lung cancer-- from a new drug that has been extremely effective. New things come down the pike all the time. It might be good to have your tumor tested for other features (PD-L1, EFGR, etc... there are several) that might indicate other possible treatment options, too.

I hope your treatment wipes out the tumor and spots and leaves you NED!!

I would ask you doctor these same questions about the intent of the treatment and the horizon ahead of you, and hear what he/she says. And feel free to get a second opinion if you are not confident in your doctor or certain that it's the right course of action.

(((hugs)))

SB

kit, your fears are understandable. Getting a mets diagnosis is life changing. Please know that many of us frame this as “living with metastatic bc", not dying from it. Also please know that Ibrance and exemestane are powerful medicines. Ibrance is a chemotherapy pill, and is very promising in helping the exemestane become more effective in preventing metastatic progression.

There are different approaches to treating mbc. Many women are started on the hormonals like you. I was diagnosed stage iv mets to bones from the start. I had chemo, lumpectomy and radiation then had eight years of stability on Arimidex.

Just this month, a scan showed progression of mets in the spine. I'm switching to the Ibrance/exemestane combo. Ibrance wasn't even available when I was first diagnsosed.

Yes, I feel scared and nervous, so I know how you feel. Time will tell how the new drugs work. Give yourself time to adjust. For now, try to keep your life simple and take care of yourself. Things will get better as you start treatment. I wish you the best.

Hi, kitkit, your diagnosis sounds similar to mine - I was also all set to start chemo (even had the stupid port implanted), when a scan showed metastasis to my spine (T11). But I had already had the primary tumor removed during the surgical biopsy - the surgeon and I had agreed ahead of time that if it looked "simple" enough, he'd just cut the tumor out while he was there, and that's what he did. He also removed four nodes for testing - the first was positive, the next three clear.

It was absolutely a shock to hear from my former oncologist, "you're incurable, so we're not going to treat it, but I can give you Femara if you want" (he never even mentioned Ibrance, even though I was ER/PR+/HER2-). Well, that's why he's my former oncologist!

I've been on Ibrance with letrozole since August of 2017 - now in my 22nd cycle. I also had Xgeva for bones every month for the first six months. After my follow-up PET scan at 6 months showed no evidence of the tumor on my spine, and a completely healed lesion, my oncologist switched me to a Prolia shot (same medicine, lower dosage) every six months, which I still get.

I have virtually no side effects - just more tired than I used to be.

You asked if Stage IV was now considered like AIDS - my onc likened it to diabetes, saying we'll manage it until they can find a way to cure it. I have no intention of dying from this!

If you haven't already, head on over to the "Ibrance" post - you'll finds tons of information, meet so many amazing people, and get a lot of encouragement! Any question or symptom you can possibly have has been experienced by someone already, and they can help you deal with it.

Congrats Mazie for doing so well on this trial- which PI3K inhibitor do you take? And it sounds like this is firstline? Was it required that you had a PI3K mutation to be on the trial? thanks!!

Hi, kitkit. I'm another Stage IV lady who was beyond shocked when when I was told by my MDA MO, Here, just take these two pills. What?!?! You're telling me to take two pills for my MBC w mets to lung, chest and liver? You've got to be kidding, I thought but didn't say. Well, Here I am over two years down this road I'm on and still living well. Yep there have been bumps along the road. I found out within 3 months that my liver mets were not responding to IL but my lung and chest mets were. So, I had local TX called y90 to kill those nasty liver mets. That kept them quiet for 18 months.

Now I'm on a new road. After IL and AA failed, I decided to change to a more qualified MO at a big Cancer Center in Dallas. There will be times of scanxiety, unknowns and surprises on your road, too. I'm waiting for a PET to reveal how much more my mets have grown since December= scanxiety . It will be April 6. Then, on April 11, at my MO appointment I will hear results and options for TX. Unknowns at this point, although my MO mentioned Xeloda or clinical trial. Oh I forgot to mention the waiting game, we hate the waiting. But, the surprises are sometimes a complete unknown. Be prepared.

My preparations include reading up on the clinical trial thread. I also, by experience, know that I will ask about having another y90 if she decides to put me on Xeloda. Sometimes, local treatment can be done simultaneously.

You have decided on a clinical trial. I'll be very interested to hear which one you'll be on. Knowledge is power on this road. I hope your MO will get genomic testing for you after you have your T-6 BX.

Kitkit. Sounds like a perfect combo for you, with the addition of the other drug maybe you'll get even longer than the rest of us who were on IL only. I'm sure that's their goal. Keep on buying new clothes, you're going to need them. I know a lady who said she was afraid to buy green bananas, she thought she might die before they ripened enough to eat. LOL

Hi Kitkit

I have had a similar experience you are going through. Went in for my regular mammo and sono. Next day my Doctor called to say see a Breast surgeon immediately. He had me go for a MRI. He then sent me to an oncologist. They said to have a port put in and have PET-CT Scan and a Bone Scan. Had the tests done then surgery for the chemo port. The day I was suppose to start Chemo was the day the oncologist decided to finally read the PET-CT Scan and Bone Scan. Only to find out the port wasn't necessary being they found cancer in my leg and in my lymph node, and chest wall....

Oncologist said chemo, radiation, surgery was out of the question. He put me on Ibrance, Letrozole.

Few months down the road I had to repeat all the tests. It showed my tumors shrunk drastically. So much so, they couldn't find two turmors. That was a very good surprise to hear.

Breast surgeon and oncologist said lets wait a few more months and see what happens. Which were I am now, I had more Scans, MRI, Mammo, which showed a new tiny tumor in my left breast. They said this is the time to have surgery. Saying right mastectomy and the left with a lift... Double mastectomy with reconstruction, or wait again.

I said I want double mastectomy Without reconstruction being so many problems can occur with that. I don't want to go through 2-3 + more surgeries. Had my fair share in my lifetime. And at my age - turning 65 this coming May, do I really need fake boobs? - Nope!

I asked the Breast Surgeon will it prolong my life... He responded "No!" - well that wasn't what I wanted to hear.

I asked the Oncologist not once but twice at different visits, if having the double mastectomy will have any effect on my life. He told me I will live a long life, even with the cancer in my lymp node and chest wall. He said he would keep me on the IBrance and Letrozole and recommended radiation. I questioned him about Chemo, he said there are three new drugs he would try first on me before chemo. Doc said Chemo is my last resort.

I scheduled my DM surgery May 6th... In the back of my mind, I am hoping between the surgery, radiation, the drugs, it will give me longer life than what I have read MBS 5 yrs... yikes.