spine mets after 7 years

HLB

Hi friends, I've been lurking for a few days. Just found out Tues I have 3 maybe 4 mets, 2 thoracic, 2 lumbar. I'm still in the shocked stage and now entering depressed and PISSED OFF! I have been getting the ca 27-29, which is not usually given but my doc finds it useful and thank God for him because as soon as they went to 77 we did scans and found the mets. He says they are tiny and that its a good thing that it took 7 yrs to show up. I got a shot of XGEVA and I'm taking Femara. I am trying to be positive and tell myself I have a lot of years. But the bad thoughts sneak in and I remember people who did not last long after mets. Maybe it depends what kind of mets. I have a lot of concerns like why are they not radiating the spots to get rid of them? And should I have them biopsied incase the status changed and the hormonal treatment won't work? Also a friend is getting femara as well but also a hormone shot every 3 months. I forget if its zometa or zeloda but its the one that started as a prostate cancer medicine. That makes me wonder if I should be getting something like that as well, as an additional hormone blocker. I've read a lot of encouraging things on this site and thank you all and pray for you all. I know I will make it to acceptance and fighting but right now I'm just so bummed. I hate thinking I might not have a normal lifespan. It makes me so sad for my parents. I'm 49. Bless you all. Heidi

bevin

Dear Heidi, I am sorry of your new diagnosis.  I am sure several stage 4 folks will be along soon to chime in.  Have you thought about getting a second opinion to make sure of your tx protocol?  I think you've asked great questions and want to get this back to the top of the post chain so those with experience will respond.

Good luck to you.

stellaratovsky

I was diagnosed with bone mets in may after being Ned for 3 years. I am a 40 year old mother of kids. It's scary but none of us have expiration dates on us. My onc said this is a chronic disease and we could live long lives with this. I am know beginning to deal with all of this just take one day at a time. So you know I told my parents that I have a bone diseases I did not tell them the extent o this. I think if I would they would have both died. I don't think they are ready to deal with this. It took them several years to get over my original diagnoses.

HLB

Thank you so much for your replies. I am dealing a little better each day. My onc said the same thing about being treated like a chronic dz. I will just have to do everything I can to make sure that is what happens. My parents want to take me to CTCA. I am ok right now with having a treatment and being started on it. Now I have some time to get my head straight and do the research and get at least one more opinion. I am big on research and complimentary treatment. One thing I took with my first dx was Maitake D Fraction, and I'm mad at myself for stopping it but it just got too expensive. Stella I wish you could tell your parents. I know how you feel not wanting to upset them. I hate that my parents have to go through this with their child because that is what we are to them no matter how old we get. But I know they would be very upset if I didn't tell them. And I don't know what I would do without their support! We were sooo worried going to the appointment and after he explained everything to us we all were a bit relieved by the way he explained things, like chronic disease, the mets were very tiny, and that there were a lot of factors in my favor that made him optomistic that I could be one of those chronic patients. Thank you again ladies for your responses. I've been reading here a lot the past few days and it so wonderful to find caring people here and pretty much every question I can think of is addressed somewhere here. Peace and healing to you.