Making a difficult choice about treatment

Hello.

I'm sure there will be many other opinions chiming in but I can only speak for myself. I was diagnosed with a recurrence 10 out of 14 lymph nodes in the axillary sac area with at least two or three of them bursting and intruding into muscle. One of the doctors referred to me as stage 4. scared the hell out of me and almost drained the hope right out of me also. Although she said it in good context that given we're beating back all known active disease that I should be able to keep this @ bay for years and years.

The other doctors never said anything they just proceeded with surgery and radiation and chemo and switching hormone therapy after having an ooph and full hysterectomy. I also get zometta two times a year by IV. I think having a young child myself, I don't think I could deal with the stage four incurable at least not trying for a curative approach. To raise my son to the the best of my ability, with hope every 3 month ck up and beyond is a blessing.

You did not say what the other hospital suggested you do. Are they suggesting more or less aggressive approach? Can your health take this treatment? I say probably because you are only in your 30s. Also to keep in mind there are so many stage 4 sisters who have achieved NED and no active disease for years. Or as scary as it sounds they have mets but are slow growing and not really interfering with their day-to-day life. Realistically we all have to think that down the road this ( or any other life actually) probably isn't gonna end well...but the further we can kick it down the road, there's more and more breakthrough treatments in the pipeline. I think that having hope and having a chance is the way to go especially when you're young and there's kids involved. God bless you and congratulations on your excellent response to treatment.

PS I met a woman from my son's basketball team who is going on seven years and NED after being diagnosed stage 4 with lung and mets to spine. Also I am constantly on Ativan and Ambien to sleep so holding onto hope that we've beaten this thing back with a baseball bat really helps me sleep at night when I finally do get some rest.

what kind of surgery? Mastectomy? Liver resection?

if you had a complete response to therapy and are Ned, I would not have any type of treatment to the liver, either radiation or surgery.

I had ablation to my liver as I had one small tumor that remained after treatment, so I had it abated to get to Ned.

I was diagnosed er+ her2-

I had neoadjuvant chemotherapy (given prior to surgery). It shrunk the tumor from about 2 x 3" to the size of maybe a small marble which could still be felt.

After chemo, I had a lumpectomy with NO sentinel lymph nodes removed. The MRI I had during the diagnosis process showed no lymph node involvement, so I could not see invading my lymph system. And I felt I had less chance of getting lymphedema. I had read at the time that there was no need to take the sentinal nodes at stage iv, you can perhaps research it.

Following the lumpectomy, I had 33 rounds of radiation. Then began hormonal treatment, Arimidex, taken daily and have been stable for six+ years, getting scans twice yearly.

Certainly, since I am having an exceptional response to treatment, I am happy of my choices. But they may not work the same way for everyone. My onc never claimed I was being treated for curative effect. The mets to the bone are in hip, rib, scapula. I have joint ache from arimidex, but have learned to pace myself to deal with it.

Research your options and listen to your gut. When I was first dx (de novo), I incorrectly thought there was one specific standard of treatment to follow in a precise order. Now I know differently, and there are various ways to approach this with the unknown being a factor.

Best wishes to you as you figure this out.

Also, please visit the liver mets thread. I know I have learned so much from my friends in the bone mets one.

also I do agree with jensgotthis - joining the liver mets thread has helped me understand so much more as those contributors are so knowledgeable!

Emmy, I was also diagnosed while pregnant at 38. Talk about a cruel joke!! I am sorry you are here but glad you found us. The decision is really up to you but just wanted to note there are many regimes that will let you maintain your quality of life. AC is pretty harsh. Most of the other standard options for someone with your profile are much more tolerable. For whatever it is worth, I would just say to keep in mind that liver mets can be tricky little buggers. The environment in the liver (with all the blood and nutrients pumping through) can help the cancer flourish, regenerate easily and sometimes quickly. If you remain NED on a tolerable systemic therapy for a long time, you could always try to drop the meds at that point. However, it is much easier if you stay ahead of the liver mets then try to play catch up. I have maintained my quality of life for the last two and a half years (raising newborn/now toddler, working full time and running) on three different systemic treatments: Aromasin/Faslodex/Ibrance, Xeloda and Aromasin/Afinitor. Good luck figuring out what is best for you.