CommunitiesLiving with Metastatic Breast CancerSingle Metastasis in Stage 4 Cancer: Your Experiences

Single Metastasis in Stage 4 Cancer: Your Experiences

GD

Community Member

2 years ago

A question came to mind today and became several questions. How many of you were diagnosed stage 4 with only one met site? (Doesn't matter if you were de-novo, local recurrence or distant recurrence.) Where was it? How long did it take to be NEAD or NED? How long ago were you diagnosed?

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32 comments
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accepted answer

Accepted Answer

These are really thoughtful questions about oligometastatic disease - when cancer spreads to just one or a few sites. Many people in this community have different experiences with single metastasis locations, from bones to liver to brain, and the timeline to achieving no evidence of active disease can vary greatly depending on treatment response and individual factors. Sharing these experiences can help others understand the range of possibilities and feel less alone in their journey.

3+ patients found this helpful

LZ

Community Member

6 months ago

I have mets to my bones & was dx de-novo 26 mths ago.

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DO

Community Member

6 months ago

I was diagnosed 3 years ago with stage 4,Mets to my bones.

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CH

Community Member

6 months ago

I had er and pr+ her2- idc in 2009. Mastectomy and chemo and ten years on tamoxifen. Came back about a year and a half after coming off tamoxifen. Currently stage 4 in 2021 with one spot on my sternum. They have said it was dormant until I stopped tamoxifen and then migrated across to the edge of the sternum.

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BT

Community Member

6 months ago

I was dx stage 4 breast ductal tumor; primary with live lesion met -on 6/2/22

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BT

Community Member

6 months ago

Sorry, I meant liver ( intra hepatic duct) met.

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KM

Community Member

6 months ago

I was diagnosed denovo in June 2022. ER+\HER2- IDC, primary tumor in R breast, mets in my lungs. That was the only confirmed location. A nuclear bone scan showed “suspicious” spots on my ribs, but further tests were inconclusive, so as far as I know I had only lung mets. I’m still on my first line taking Letrozole and Ibrance. As of September 2023, I have no visible metastasis on CT scan. My primary tumor has shrunk but it’s still hanging around in there so I haven’t reached NEAD yet. My oncologist said it might still continue to shrink.

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BT

Community Member

6 months ago

What is denovo?

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MA

Community Member

6 months ago

I'm confused by your question... my dr told me that since i had primary idc w mets to my bones and liver (de novo, ER +/her2-), i could *never* be considered NED bc there will always be some level of cancer present.. he sd it can't be eliminated completely...all we can do is try to keep it under control for at long as possible.. I would love to hear that there are people out there that have found this to not be true..?

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LZ

Community Member

6 months ago

My tumors shrunk & I was doing well for almost 2 years. My scans were showing no activity with the Mets. Then I was having pain in my left shoulder & it was going up my neck. I had a PET scan & an MRI of my head & another of my left shoulder. Active mets was found in my Clavicle. So now I'm on Kisqali & Faslodex. So when I was being scanned over those almost 2 years & they found not activity, we're also considered Ned. No evidence of active mets should make you feel pretty damn good so you go ahead & say you're Ned. I get a bone scan on the 11th & a CT on the 15th & I'm hoping my new treatment is working & there's no active mets. 🤞

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MD

Community Member

6 months ago

April 2022 diagnosed stage 4 metastasized breast cancer. Chemo, radiation, maintenance, 3 new sites, Enhertu 3months, new sites gone, maintenance on tamoxifen.

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DB

Community Member

6 months ago

I was originally dx TNBC stage 2 in May 2018, neoadjuvant AC/taxol, bilateral mastectomy and then capecitabine. In November 2021 I had a local recurrence, gemcitabine/carbo plus Keytruda then surgery then radiation. In June 2023 I had a pulmonary nodule removed that was determined to be metastatic TNBC. But since it was resected and I have no other evidence of Mets, I am considered NED at the moment. Because it’s TNBC and I’ve had so much chemo already, I’m currently off therapy, scans q3months.

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MA

Community Member

6 months ago

De novo means that your metastatic (stage 4) diagnosis was the first time u found out u had breast cancer vs recurrence of a previous bc diagnosis. 94% of mBCs or as a result of a recurrence. Only 6% are de novo.. at least that's what I read somewhere

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MB

Community Member

6 months ago

I have been dx w/ stage 4 w/ Mets to my sternum

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MB

Community Member

6 months ago

Dx 2/12 years ago. What if NED

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MA

Community Member

6 months ago

To Mary: N.E.D. stands for no evidence of disease 🫶

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KH

Community Member

6 months ago

Marcy, I was diagnosed in May of 2023 with stage 4 de novo breast cancer. Invasive lobular with Mets to bone. FDG uptake was 2.2 on right and left iliac and 4.4 on L2. I started kisqali (600 mg) and letrozole 2.5mg in July of 2023. On January 23, I had my second PET/CT scan, and I was no evidence of active disease. My oncologist used the word “remission.” He did say I had a “fair chance of it coming back.” But there was no visible cancer detected and that may be the best we can hope for! I don't know. Do I still have cancer? I would imagine at the microscopic level. Is it asleep or dormant? I don't know. Did it not show up because lovilar can be hard to detect? Well, it sure showed up on my first PT/CT scan in May. I had an 8.5 cm in my left breast and at least two lymph nodes were swollen. That's pretty big. My oncologist even double-checked the images himself bc he was surprised that with only 6 months of treatment, the primary tumor was gone, at least for now. Hopefully, forever as nothing is impossible with God. I also did an enormous amount of integrative treatment. Completely cut out processed sugar, alcohol, and limited carbohydrates. I lift weights, power walk and play pickle ball 4 to 5 times a week. I do mistletoe therapy though my integrative oncologist. Prayers for everyone!

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ZP

Community Member

6 months ago

I'm very similar to you. Could we talk?

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LP

Community Member

6 months ago

I was diagnosed originally in 2009. Stage one left breast and stage 2 right breast no family history. Double mastectomy 5 years of tamoxifen and just when I was feeling secure I had a recurrence in my sternum. That was almost 5 years ago. Scans stable since then on ibrance and letrozole and zometa infusions

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MB

Community Member

6 months ago

Dx 3 years ago with Mets to my bones

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JG

Community Member

6 months ago

I was diagnosed last year with mets to bones. Currently on Verzenio, Letrozole and Xgeva.

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SG

Community Member

6 months ago

I was diagnosed in 2017 and it had spread to my lungs. So far that’s the only place it spread to. The cancer in my breast is resolved but not the lung nodules. Was on carbo, gemzar and keytruda for almost 2 years. Doc is switching me to enhertu as I am HER2 low. Nervous about this, I hope the side effects aren’t as bad as I’ve read about. First infusion will be this Friday.

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CH

Community Member

6 months ago

Recurrence in July 2021. One spot on my sternum near to my original site in 2009. Has been stable and not growing.

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JP

Community Member

6 months ago

I have Mets to bones on Ibrance and faslodex it’s quite a journey, now I have DVTs in my leg . Burning sensation in stomach area!

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GD

Community Member

6 months ago

Zipporrah P sorry I have not been on here much since January. I had knee replacement surgery, and it has had me exhausted. I finally getting back to checking out the site and doing things. How would you like me to reach out to you.

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GE

Community Member

6 months ago

I was diagnosed Inflammatory triple neg bc with metastasis to mediastinum and clavicle but Stage 3C...?

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