Breast cancer stage 4

Hi Kathy,

I'm Stage 4 Lobular BC, ER+,PR-, Her2-. We both have the sneaky BC! I'd like to know if you were diagnosed from the beginning with Stage 4 or were you an earlier stage before? I was Stage 2 after my lumpectomy, then 1  1/2 yrs later had mets to my bones making me Stage 4. This was in 2014. My scans from Sept 2016 don't show progression, but it's in my spine, ribs, and pelvis.

I'm scheduled for new scans next week by an Oncologist that I'm consulting with who only deals with BC to make sure that I'm getting the right drugs and treatments. This 2nd opinion Oncologist is going to present my case to a panel of doctors who'll give their input. Then this consulting Oncologist will contact my present Oncologist and share her recommendations with him. Hopefully I'll benefit from more than one doctor's opinion. It's worth the trouble and you'll be more infor as to where you stand. Also your insurance company encourages 2nd and even 3rd opinions.

In answer to your question about getting a second opinion I definitely say YES!

Seems you have a lot of questions about your present CT/PET scans. Did your doctor tell you in plain English what it means? I think that if he/she did, you'd feel better. My doctor usually shows me my scans on his computer and tells me what he sees and what's going on Cancer- wise. Reading these reports on your own and trying to figure out what it all means is extremely scary. Don't do it! Ask your doctor to explain what the scans show. Also remember that the Radiologists who write these reports go over and beyond in writing all kinds of minute details in their reports. A lot of it is not essential for your doctor in figuring out the basic facts of the scans, but the Radiologists are required to write down every itty bitty thing they see!

The fact that you have  no major organs involved is wonderful! Try to dwell on this positive aspect instead of obsessing over the other stuff. The medicines you're taking will work on the rest. That's why you're on them. I don't think you have bone involvement but if you do, you'll be given either Zometa infusions or Xgeva shots to strengthen your bones. I'm on Zometa.

My markers are much higher than yours. I've never had low numbers like you! That's only one small part of the picture though. 

Kathy, try to think positive! Say your prayers every night and trust that you'll do well with your treatments. If you need anti-anxiety medicine, ask your doctor for it. I take it when needed. Many Stage 4 women are also on antidepressants. My doctor is ready to prescribe them if I need them. Many are also seeing therapists in dealing with this. I'm considering it myself.

If you can, find someone to talk to about your feelings. I go to a couple of support groups even though they don't have Stage 4 women in them. Check out the internet for Metastisized Breast Cancer support groups. There are some out there. There are even websites that list teleconferencing for Stage 4 BC women or speaking to someone on the phone who's living with the same exact condition as you.

Just don't stop living! No one knows how long anyone's lifespan is. I know some Stage 4 women who are into their 20th year or more living with BC mets. Our conditions are chronic but treatable. Plus there are new treatments coming along all the time. So, try to hang in there. After this nightmare shock wears off, you'll find your new "normal" and go on from there. That's what I'm doing. That's what all Stage 4 women are doing.  You'll make it! 

Wishing you strength as you go along this journey. Again, think positive!

                                                  Kats2