Newly diagnosed and crushed

Sportymom,

We're so very sorry to hear of this development, but we are all right here for you. While it can be very overwhelming and upsetting to learn the news your breast cancer has spread, please know there are many, many members here who have received this diagnosis, got additional treatment, and are continuing to enjoy a long life. It's hard not to feel despair, but please know there's still hope for a fulfilling future. Others will surely be by to share this sentiment with you as well.

There're some helpful links on the main Breastcancer.org site that you may find helpful, too, when you're ready:

Living With Metastatic Breast Cancer
Your Feelings About Metastatic Breast Cancer
Metastatic Breast Cancer: Facing Fears
Getting Emotional Support After a Metastatic Breast Cancer Diagnosis
Mental Health Care Options for People With Metastatic Breast Cancer

We hope this helps and that you get some more support soon. We're all here for you!

--The Mods

Wendy, I was almost in your shoes about two years ago when I got the news that not only did I have breast cancer, but it had already spread to multiple places in my spine and hips, and I was stage IV out of the gate. I was 42, and my 6 year old wasn't even half-way through kindergarten. The sorrow that my little girl would grow up without a mother, that my husband will be left to raise her on his own and most of all that I won't be there to see her blossom into a woman... I remember that very well. I spent a lot of those beginning weeks feeling like my life had stopped, and everyone else's was still going on without me. Thinking that very soon, their lives WOULD be going on without me.

But then I started treatment, and at my first follow-up the doctor could feel the breast tumor getting just a little bit smaller, and a couple of months after that I got my first follow-up scan that showed improvement in all the bone mets. At that point I realized that there was a chance I could be among the lucky ones that get several years out of treatment - maybe 5, maybe 10, maybe even more. According to the newest stats, stage IV patients under 50 have a 21% chance of living 10 years or longer. Those patients were diagnosed before the CDK inhibitors were on the market - I'm hoping that with the CDK inhibitors it's closer to 25%. If nothing changes, one in four of us will make it ten years or more. One in four is not great odds, but it's not in the realm of impossible miracles. And a lot of things can happen in that time. Most of the time, I manage to cling tight to that hope, and for the most part I feel like I've rejoined the living, at least for now. I have dark days and moments of despair, but I try to remember that saying that "worrying doesn't empty tomorrow of its sorrow, it empties today of its strength" and push back on those worries as hard as I can. I'm not dying today. Today is still good. Today I'm still here to tuck my baby into bed and I can still cheer her soccer team. If tomorrow I can't, I'll cry tomorrow. Most of the time, it works. Maybe it's because I'm rubbish at feeling bad, so I'd rather be in denial and feel good for as long as I can...

I realize I got lucky with my treatment so far, and that not everyone does. But you are young, you have a hormone positive cancer, and seems like you don't have any other mets besides the pleural effusion. There is a great chance that you will respond to hormonal therapy, even though you didn't respond to FEC. Once you do, once that effusion starts drying up, you will get to a better place mentally. Hope is an amazingly powerful thing, and your mind will latch onto it as soon as it shows up. Until then, give yourself permission to do whatever it takes to get your mind off your diagnosis. Whatever it takes to allow the time to pass without cancer being on your mind every second. Eat yourself silly, binge watch TV, play Candy Crush, ask your friends to entertain you (yes, they should - time to be selfish), shop, run, meditate - whatever it is. Just keep your eyes out for that hope knocking on your door.

Hugs.

It's a lot of uncertainty for even the most centered of us to live with, however there is no other choice. Choose life today! We have your back when you need it.

hi Wendy

I’ve been Stage 4 for 6 1/2 years. I never thought I’d get to this point but here I am. Everyone handles this differently but for me having knowledge of the disease and a dr I trust does help. Take it day by day and breath it does get easier. Good luc

In July 2011, when I was diagnosed with lung mets, I thought I was doomed. I assumed I'd go downhill quickly and die within three years. After all, that's what the stats said. Well, the stats are ancient and the new treatments are effective, so here I am, NEAD, as are many others on this forum.

Take heart!

Tina

Hi Wendy,

Please don’t pay attention to the stats. I was diagnosed stage IV in late 2016 with MPE to the right lung. Like you I thought I had just a couple of years. I’m now coming up on three years and doing great. I work full time and show no sign of slowing down. The Road has been bumpy at times but I feel pretty positive that I will see five years. The stats are old, ignore them.

One other thing, did your oncologist say the cancer spread while you were in treatment? Given your timeline I would think that it had already spread and only grew enough to cause symptoms. In my case a few cells spread sometime before 2001 and sat there waiting until something turned the switch. That particular chemo wasn’t able to knock them back - Taxol didn’t work for me - but there are many treatments, particularly hormone treatments that are very effective.

Don’t give up. As others have said, one day at a time.

Pat

Hey Wendy,

Sorry to see you have joined this unfortunate club, but looking at your stats, and building on what sadie said about potential dormant/tiny mets that were there all along - you aren't in a bad spot to be switching therapies. You are already on goserelin (so don't have to wait for that to kick in before starting Ibrance) and you had your main tumor removed. I know supposedly it 'doesnt matter' for prognosis if its been removed or not, but I wish they would take mine out (its too big right now). I also panicked at the initial diagnosis that I wasn't going to get enough time to move home to be with my family, but I've calmed down with the help of getting informed and learning more about the treatments I will be getting. It sucks, no two ways about it.

Have a look at the NED Sisters thread and keep putting one foot in front of the other. I could swear there is someone else on here who did your chemo regimen and came out the other side a few months later with the IV diagnosis too. And better the mets show themselves now rather than laying dormant a bit longer and show themselves later.

Hi Wendy,

Just to clarify, my first treatment wasn’t successful. Despite throwing everything at it, the cancer spread anyway. In my case it just took a long time for those rogue cells to start to cause issues. And often we don’t have any symptoms from mets. I have a LOT of bone mets. Unclear how long they have been there. My point was, not all chemos work. Just because one didn’t doesn’t mean another won’t.

This is such a difficult time for you. We’ve all been there but once you have a plan and start moving forward things will get a bit easier. Until then, I’m here sending you virtual hugs from the wet coast.

Pa

Wendy, a couple of thoughts that may help you. Or not but might help a lurker.

First of all, I'm sorry you are joining us. This is an exclusive club that no one wants to join, but once you do you'll find that only the best ladies get to join! Second, you are in what I like to call the "shock and awe" period. We've all been there. I was lucky enough to do mine through the haze of narcotics so it wasn't as painful as it could have been. Let yourself cry, grieve, etc. And if you need help (sleeping meds, anti depressants, anti-anxiety) ask for them!! I took sleeping pills for two months after diagnosis.

I went to a lecture at one of the MBC conferences. He said getting a diagnosis like this is a life-changing event. (well, d'oh) He meant on the scale around having a spouse die or something like that. Yesterday you had a vision for what your life was going to be. It might have been misty, but you had a vision around being a Mom, a spouse, etc. Today that vision has been blown up. It takes time to grieve the loss and to build a new vision. His advice was the same as they give someone who has lost a spouse. Don't make any major decisions. Don't give away your stuff. Give it time.

The 'thing' that works for me is along the lines of what Piggy99 said. You are not going to die today. You aren't going to die tomorrow or next week or next month. Work with that. Tomorrow will come and you can tell yourself again that you aren't going to die today or tomorrow or next week.

Hang in there and please accept lots of hugs. It will get better. Promise. ER+ tumors respond better to hormonal therapy than they do to the red devil.