Feeling lost and scared

Hi Lisa, sorry you're feeling this way. Where are your new growths? Bone or visceral? Is this a de novo diagnosis or recurrence? Is this your first line treatment? What is your breast cancer profile? ER+? PR+? Her2? It sucks either way. I found out May 25 it was cancer, July 24 that it's Stage IV. I'm 44 and I have three beautiful kids that keep me motivated. Please know we are here for you. I see an oncologist at Dartmouth Hitchcock Medical Center. I love him, that makes all the difference for me.

LisaL, two thoughts:

One is that I almost felt worse with my first progression than I did with the diagnosis. Somehow you feel like everything will be OK than the rug is pulled out and you realize that yes, this is cancer and it will progress. That's part of what you are feeling. When you find a new treatment and it works you'll feel a little better. Your cancer hasa become resistant to letrozole and Ibrance, so it's time for something else. Most likely Faslodex but there are other options.

The other thing is that your MO isn't abandoning you. At least I hope she isn't. You should talk with her again. Hopefully what she's doing is sending you for a second opinion and/or a treatment plan. Then you carry out that treatment plan at home. She's trying to find as many options for you as she can. That's a good thing. It's doesn't mean you need to travel to the Farber every month unless you enter a clinical trial.

I'm a patient at the Farber and the docs there are great. If you call they'll give you an appointment within 48 hours (I believe unless that's only for newly diagnosed patients). Bring a CD with your old and new scans for them to upload to their systems. In advance of your visit take a look at the clinical trials that are open: http://www.dana-farber.org/research/clinical-trial... so you have some idea whether any interest you.

Feel free to PM me. I work about a block from the DFCI so if you want someone to come hold your hand I'd be happy to do that.

Lisa L- I was diagnosed with de novo BC to bones when I was 47. I’m now 53. I think I’m on my 4th or 5th line of treatment? Some work longer than others. Some are more tolerable than others. The nature of the cancer is to eventually outsmart the drug, thus progression. So you move to another and start the process over. The thing is, there are SO many lines of treatment..and each year I’ve had BC, new ones have come out. I’m 6.5 years out and still have multiple options in front of me. My point is...you have many many more years to live. You are currently not dying from cancer..you are living with it.

I’m a big research hospital fan. I worry about the smaller town private oncs. Some, not all, of them aren’t necessarily up on the latest and greatest treatments. Worth the drive for a few more years of life, no?

Chin up, and take anti depressants. If one doesn’t work, try another. I finally found my magic happy pill in Prozac.

I hope we can help you feel less lost and less sad.

Stefanie

Lisa, you do not have to see how it is going to work out. It is the age old wisdom of taking things one day at a time. I traveled an hour one way for chemo and surgery and it was doable. Especially because that is where the best treatment was, and thats the same for you.

It sounds like you are worried that your dignosis is disrupting the lives of your loved ones. If roles were reversed, you know you would do what it takes to help a child, husband, sister, ect. and not feel inconvenienced. If you need to accept rides from others, or meals from them or other kinds of help, please realize that in the midst of your dealing with bc, they feel helpless in some ways, and geting you back and forth to appointments or helping you with your kids or wherever you need a hand is making them feel they are helping in ways that they can.

As for kids, it is rough but they grow thru this. My son was a high school senior when I was diagnosed, and tho I wish he did not have to deal with my diagnosis at that time, we took it a day at a time and learned to ride the roller coaster and figure things out as we went along. Other than your kids and dh, dont worry how others are dealing with your diagnosis. Dont try to make them feel better about it. That is not your responsibility, Your energy needs directed to you. Let them figure things out for themselves.

Please realize you are worth what you may consider "the extra trouble" of getting you treatment. You would want the best for your loved ones; they want the best for you. As women, we are so used to putting everyone else first, but guess what? WE WOMEN are worth it, too.

You do not have to be strong. Just show up every day and let the day unfold. Your family wants you around for a long time, and you can be an example to your teenagers on how someone deals with a crisis. It gets rough at times, that is okay to let them see that. But, there are other times when it is all worth it. We are living with bc, not dying from it. Best wishes to you.

Lisa , u have gotten great advice above. I just want to encourage you too. I was 47 when initially Dx, my youngest in middle school, 2 were in HS & 2 in college , oldest came home from her teaching job to give emotional support. I made it my goal to live to see youngest graduate HS. Well that was a yr & a half ago. I have gotten to witness oldest son’s wedding, his graduation from medical school, my oldest is now working on her PhD, 2 more got their bachelors degree & 2 youngest in college. 2 MO’s have retired , I think I am now on my 4th MO. I have switched to Uni of Fl, drive an hr & a half to get there. I make the most of these trips as son #5 goes to college there & we visit when i am there for treatments.

Some one coined the phrase “progression depression” . I loved it, cause it is so true. You feel down & start thinking the worst, then you try new treatment, watch it work for awhile , get optimisim back. I thought 2 Christmas’s ago would be my last , but I am still here, and look at each day as a gift. My family doesn’t like to talk about cancer, laugh at me when I pull out the cancer card. But I have spoken w/all my kids & husband separately. These are usually tearful discussions, which my son over Christmas said he was glad we talked & that he had not been able to cry but it felt good to let it out. Hang in there, you will be surprised what good will come out of this ordeal.Sue