help -- freaking out -- just got diagnosed with MBC

Pirate_Girl

New to the boards -- had early stage T1c IDC no lymph nodes in right breast 18 months ago - had partial mastectomy and went on Tamox. -- opted out of radiation with MO's agreement. Due to recent fever of unknown origin (FUO), had a PET/ CT scan today. Dr. called to say it showed lots of lesions. WTF???? Can't see MO for a couple of days -- am having a hard time.

Moderators

Hi there, Pirate_Girl. We want to welcome to our community here at BCO. We're so, so sorry you find yourself here, we know this isn't easy news to process. We have an active and knowledgeable community of members here who are with you every step of the way! When do you see your doctor to go over the scan results? Please keep us posted on when your appointment is, and how it goes. We're thinking of you!

The Mods

illimae

I’m sorry. The beginning is really hard but know that this does not mean it’s the end. It’s not great obviously but many people can live reasonably well for years on treatment. Do you know where the lesions are, bone, liver, lungs?

Cure-ious

Very sorry, Pirate Girl- it is just awful to be in shock and horrified, holding your breath as you go through the various tests and scans and biopsies they need to do just to figure out your status, and second-guessing how you will live the rest of your life, how your loved ones will cope, etc. It will feel much better when you have a plan and can see that the drugs actually do work, and that you do have time. Meditate on the idea that major life-extending treatments may well be heading your way, and try to steer clear of despair for now- I finally got so sick and tired of it all, I made a decision to not consider myself terminal and stress out over this until I am told definitively that I have less than a year to live. And every time I went there, I just short-circuited the whole exercise by telling myself to deal with it later; or let the doctors worry about it for now. Easier said than done, but do-able if you persist. Also only share the news with the few people who you feel "need to know", because most people have a very different idea of what it means to live with MBC, unaware that you may live a good life for many many years- its not a chronic disease yet, but treat it as if it were, in terms of deciding who to discuss it with. That'll give you more time to process everything and to be able to interact with friends and co-workers as normal. Having a normal life is essential; I'm still working four years later.

Goodie16

The first few days after diagnosis are the worst. Try to remain calm (easier said than done!) and get your questions together for your onc. Location of lesions, treatment plans, what to expect from treatment, etc are all great questions. You will feel so much better once you have a treatment plan in place and have had a chance to wrap your head around a diagnosis.

Moomala

Hi Pirate Girl. Sorry you find yourself here. I was just diagnosed Stage 4 in March/April and that first few weeks was really really tough. It took awhile to get the biopsy done, the treatment decision made, etc. Big hug. I can tell you that what Goodie16 says is exactly what I experienced. Once I knew my full diagnosis and treatment plan I felt a lot better. I had a ton of anxiety about starting treatment but I've been on the medications now for four months and I'm feeling more like myself again, keeping my mind mind on living, not hopelessness. You will find a LOT of support here so just ask away!

jensgotthis

If you’re not already, please seek out a National Cancer Institute (NCI) designated hospital. https://www.cancer.gov/research/nci-role/cancer-centers/find

MJHJAN1014

Pirate- it really will get a lot better. So hard at first, but amazingly we adjust to a new way of living. Being freaked out and in shock at first is normal. Best , Mary Jane

Pirate_Girl

Thank you to all who have responded - very much appreciated. As I suspect all of you know, this feels very lonely and very overwhelming. Here's my update. I had a CAT scan, w/ contrast, yesterday - ordered by my MO to confirm what the PET CT scan was showing. I met with my MO this afternoon. Unfortunately, the CAT scan confirmed the PET scan - I admit I was holding out hope that the PET scan was some sort of false positive. I have lesions on my liver as well as in my bones, plus something in my opposite (left) breast but it's unclear what that is at the moment. Next steps are liver and breast biopsies -- getting those scheduled is a challenge all its own -- I am hoping to get them done in the next couple of weeks, but who knew so many people need these kinds of biopsies (and I have good insurance and good hospital options in my area, thankfully). My MO gave me a shot of Evenity (I think that's what it's called - stronger than Fosamax) to start protecting my bones and told me to stop Tamox. because we don't know yet what's going on until we get the biopsy results. I couldn't ask my MO anything else because I just had too much to process, so the above is as much as I know right now. Thanks again for your support. If anyone has any suggestions about things to ask my MO when I see him again, please let me know.

Anotherone

I was diagnosed out of the blue 2 months ago . There was not much to ask until biopsies are done - just reading about it a lot so as to have an idea what's what. Finding support groups. Making changes in lifestyle if you so inclined. Collecting info on treatment facilities and doctors available

JCSLibrarian

I was diagnosed de novo with mets to the lungs in October 2018. I agree with Anotherone that there is not much to ask the MO until the biopsies are complete. This is the time to learn about your disease. Do not simply Google to get information. As a former research librarian, it is best to use PubMed https://www.ncbi.nlm.nih.gov/pubmed/ It will lead you to information that is based on science not unfounded craziness. The Internet can be frightening. Good luck! This site is a wealth of information and support. Keep us posted on how things play out for you

Bestbird

Pirate_Girl, I am very sorry to hear of your diagnosis, and as so many others have said, it will become easier over time although understandably that may be hard to believe right now. Please consider seeking a second opinion about your treatment, as a second professional opinion can be helpful and enlightening.

It also may be useful to become a bit more knowledgeable about the disease and its treatments. When I was diagnosed in 2011, I spent countless hours on the Internet trying to become educated so that I could converse intelligently with my doctor and become my own advocate. In an effort to spare others from this laborious effort, I've written a book (which is also available in a complementary .pdf) called "The Insider's Guide to Metastatic Breast Cancer" which covers the gamut from conventional treatment options, symptom and side effect mitigation, cutting edge research, and more. For additional information, you are welcome to visit: https://www.insidersguidembc.com Sending you very best wishes!