Stage IV mets primary tumor surgery option

hi Nancy!

Are you able to share the article? I’d be curious to read it. There’s so much conflicting info out there, and I always find it helpful to see the details of the articles people often get a little “thrown off” by.

I also did not have primary tumor removed. My MO has clearly stated that there is only anecdotal evidence that it is good to do. He says that using the primary tumor as a “marker” so to speak for if there is progression is a wise choice I feel comfortable with this choice and trust our decision to leave it.

At this point, my primary tumor has completely shrunk and there is no evidence of cancerous activity in my breast. I am going on 2.5 years with I/L.

I know there are many stage 4 people on this site that have had primary tumor removed and they feel very happy about this

I think the decision may depend on if one is oligometastatic or has more extensive mets. Since I had extensive mets in multiple locations my doctors were also against surgery. They said it would do me more harm than good, especially since I have a tumor tangled in my brachial nerves that complicates things.

Our treatment decisions always come down to two questions - is it going to improve my quality of life, and/or is it going to let me live longer? They felt that in my case the answer to both questions was a firm no.

Diagnosed with bone mets de novo in early 2011, I had a lumpectomy after neoadjuvant chemo. My onc never said anything like “we will treat you aggressively." It was what I wanted, to shrink the tumor so I could get a lumpectomy rather than a mastectomy. My onc never advised me any different like saying, well with stage iv, you really don't have to remove the tumor, we just do hormonals

I also did not have the sentinal lymph node removed, even tho the surgeon wanted to do it. My research showed it was not necessary, they were not swollen and I thought, why invade the lymph node system if it isn't necessary. Am very glad I went that route.

I also presented de novo with mets to the lung. After neoadjuvant chemo, I will be having a lumpectomy next week to get rid of whatever is left of the breast tumor. I will follow that with SBRT to the now non existent lung tumor. We are doing this after I convinced my MO that it was a good idea. I will go back on chemo as the cancer was triple negative and I failed at the immunotherapy test. My hope is to get to either a pill or a shot as the maintenance plan at some point. So much of this is guess work and what you feel is the right plan for you. Even though there is no preparation for a plan until you have to make quick decision!

nowaldron, I can definitely relate to your comment about people thinking “is she faking her illness?” Because I, too, do not look sick. Even when my hair was 1/8th of an inch after chemo, a co-worker at the time asked me if I lost my hair from chemo or if I’d just gotten it cut short! I’ve never, ever been one to go dramatic for the sake of getting attention, and I was insulted by her comment because that’s what she was insinuating.

That’s why I don’t mind the commercials so much for the Ibrance and Verzenio meds for mbc. They show women going about a normal-ish day even tho they have mbc. Some women bristle at this glossing over of the more serious realities of mbc, and I can definitely see their point; yet in other ways I look at it as educating the public that we are not all bald women wearing hospital gowns with our cracks bared in the back shuffling to the bathroom while pushing an iv pole administering chemo into our arm, the way movies and tv show often portray.

And I’ve mentioned numerous times on the forum that a disability doctor I was sent to told me no way I had mbc because I had not had progression for over six years; he said women with mbc live 3 to 5 years and that’s it. He said I probably had arthritis. So how’s that for someone thinking I was faking it?!!

I’ve come to accept there will be the doubters. There isn’t anything I can do about it.