Officially diagnosed today....

Nicole, nobody is going to get mad at you for sharing your thoughts and feelings here. You are in a place where people get it. We have all experienced the shock and fear, the questions, the uncertainty. We are here with you. Take some deep breaths. You are headed to a nationally recognized cancer center, and in spite of the steep learning curve, that should help give you confidence. Smart doctor today to think about keeping you qualified for trials. You are not in immediate danger; if you were they would have you starting IV chemo right away. You are ok right now. Tell yourself that often. “I am ok right now.”

Did you know that exercise reduces the bad form of estrogen in your body? It also reduces stress and fights cancer. So that is something you could do while you wait for your appointment in New York. Also think about how you can get good sleep. I recommend guided imagery recordings for sleep, anxiety, etc. by Belleruth Naparstek. Sleep in a dark room for proper melatonin production; use an eye mask if necessary. De-stress when you can — nature, pets, yoga, meditation, laughter. You can do a lot to stay as healthy as possible right now. (Just don’t stress over that!)

A lot of us around here thumb our noses at statistics. We are not statistics. Statistics are about groups of people, not us as individuals, and they are always old. New treatments and discoveries are being made. Our futures are uncertain, but there is Hope. I think you will be able to move through this initial fear and grief and feel better. But right now, yeah, it’s really rough. Keep posting. You are welcome here.

Nicole,

Endocrine treatment is the customary "1st line" drug for hormone positive MBC. A CDK4/6 inhibitor such as Ibrance, along with Letrozole may be used and is pretty well tolerated. With only two liver lesions, you are probably a candidate for the Y90 procedure, which is an interventional radiology method of delivering radioactive (Itrium90) microspheres to the liver lobes through vessels. Your lesions will be knocked back by something and you will live relatively normally for a long time. The lesions are very unlikely to go crazy while you await treatment, but is sure is a scary feeling to think of them unchecked. You have a lot to process, but things will settle as you get more information and a definite treatment plan.

Sending love, Mary Jane

I am g;lad that you have found this forum although I'm sorry for the circumstances that brought you here.  

The first month or so after an MBC diagnosis can be extremely difficult.  There's so much to absorb at a time when one is least able to concentrate.

As others have said, endocrine therapy is generally given as initial therapy for hormone receptor positive, HER2 negative MBC unless there are severe symptoms and/or organ dysfunction, neither of which you have.  That said, with only one or two lesions, your cancer is oligometastatic, which means that localized therapy accompanied by systemic therapy can sometimes (surprisingly) be curative.  Below is a section from my book, "The Insider's Guide to Metastatic Breast Cancer," about oligometastases.  The book is available in paperback and eBook
formats (eBook is free when the paperback is ordered) as well as in a
complimentary .pdf.  All three versions
(paperback, eBook, and .pdf) are kept updated and can be procured by visiting
the ORDER tab at:  https://www.insidersguidembc.com/

With the recent introduction of checkpoint inhibitors and other therapies, patients' outlooks have improved considerably.  With a move to NY, where there are so many excellent cancer centers, there's every reason to feel that you'll do quite well!

Oligometastases
(OM) in breast
cancer is usually characterized by a solitary lesion (tumor) or a few
detectable lesions.  These lesions are
generally limited to a single organ, in which local therapy (possibly along
with systemic therapy) with curative intent could impact survival in a positive
manner. This population of “potentially curable” MBC patients is estimated to
represent 1% to-10% of newly diagnosed patients with MBC.

NicoleRod

Please let us know how your appt went tomorrow...Monday.

Hi Nicole,

Just wanted to jump in and offer your support too! I'm one of the "oligometastatic with curative intent" patients that was referenced above. I had a single brain met removed via craniotomy in February 2015. I've been NED since that time, both brain and body. My main treatment has been tamoxifen and now arimidex (AI). As I've achieved NED on only the AI, my MO had decided not to introduce Falsodex yet, but rather "keep it in the toolbox" until it's needed. Hang in there. The first few weeks are the worst. Best of luck at you consults.

Nicole

My BS and Oncologist both wanted me on ibrance and letrozole to see if the tumors would shrink. They said no surgery at that time... Had all the testing 3 months later.. They were extremely pleased, Said to wait again... More testing, now 18 months later they said this is the time to do surgery....

So it sounds like the DR at Columbia is following the same protocol.

Being I have advanced, metastatic (stage IV) breast cancer, Doctors wanted to see if the meds would hult the disease progression. Have the tumors shrink. Before any surgery. As to why 18 months... I wanted to be sure having surgery would be a good move or not. Being I have MBC.

NicoleRod, I agree, don't underestimate hormone therapy/Ibrance, especially because you have high estrogen levels. I also have high KI score. The good news is aggressive cancer typically responds to treatment - all treatment - well. I was diagnosed with super extensive liver and bone mets and also had 2 2cm, palpable supraclavian lymph nodes involved. I started hormone therapy alone and went to NEAD in the first 3 months. Ibrance wasn't approved until my treatment was 7 or so months underway and was added then. Lymph node mets disappeared never to return - still NED. My bones stayed NEAD for 4.5 years and my liver mets were NEAD for 15 months. You can start with hormone therapy and still have good results, maybe for years and years on that combo. Given that you have such limited liver involvement, it is pretty common that you would be given hormone/therapy/Ibrance.

Nicole,

Wonderful that things are moving quickly for you! I am one of those oligometastatic cases more than 11 years out from diagnosis. I also flew on a red-eye to get a second opinion in Boston all those years ago. They concurred with the mutimodal treatment proposed by my local doctors, so a big relief. This was before Ibrance, plus I was in a lot of pain and losing weight rapidly- Chemo got me into NED and relieved my pain. Wherever you decide to go, and whatever treatment you get, there is every chance you will have a great response!

hi Nicole,

I’m with the others about giving the antihormonals a chance. It takes time and that can be freaky...living with the knowledge that there is cancer possibly active in owns body is a freaky thought!

I was diagnosed stage 4 riddled with innumerable Mets to my bones. I went onto Ibrance, letrozole, Lupron and Xygeva and it took about 6 months but the giant tumor in my breast completely shrunk and the bone Mets are no longer active with cancer. This is my first line of treatment and I’ve been going strong on it for 2 whole years now (I’m amazed!).

Many other people have shared this experience. Sending you lots of good visions that you can have this too!

Hugs,

Philly