We are 224,336 members in 82 forums discussing 157,700 topics.

Help with Abbreviations

Topic: Stage 4 NED - continue treatment

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jul 11, 2019 06:28PM

Jude2 wrote:


Has any one stopped treatment with stage 4 that is NED? I was initially diagnosed in 2006 Stage 2B lump node involvement ER positive. Four years later in 2011 spread to single bone met treatment zometa and faslodex. No disease progression since 2011. My doctor believes I can stop treatment now.I'm her first patient to go this long without progression. Appreciate any input. Thank you.

Log in to post a reply

Page 1 of 1 (6 results)

Posts 1 - 6 (6 total)

Log in to post a reply

Jul 11, 2019 06:49PM BevJen wrote:

I would get a second opinion on this. Also, it could depend upon what type of BC you have. I have ILC. I was initially diagnosed in 2003. Had a single site recurrence in 2006. Took letrozole and was NED after that until 2018, when my tumor markers started rising. I now have mets to my liver, diagnosed in May (so 13 years).

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy TAC Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap
Log in to post a reply

Jul 11, 2019 06:54PM DivineMrsM wrote:

Jude, how great you’ve had a good long run on one treatment. Are you prepared to deal with progression if it happens after stopping treatment? I was diagnosed with bone mets in early 2011 and this year had progression for the first time. It does not feel good, even tho I had a great response to Arimidex. Last year, I even convinced my oncologist to cut scans back from twice a year to once a year, and cutting back zometa from four times a year to twice a year because I was feeling confident. Then a scan in March showed a few new bone mets.

Of course, it’s your personal decision, but my thoughts are why fix what’s working? Why fix what ain’t broke?

found lump 12/22/10~er+/pr+/her2- stage iv bone mets------------- Chemo~lumpectomy~radiation~arimidex------------- March2019/Ibrance-Aromasin---------- Sept2019/Verzenio-Aromasin
Log in to post a reply

Jul 11, 2019 07:26PM 7of9 wrote:

Devine Mrs M - you bring up a good point. I met a lady who is going on 8 yrs...8 YRS of Herceptin. She had a lung and spine met. NED since surgery and starting treatment. Her heart handles it well for some reason and her husband who does numbers for a big hospital encourages her to keep going - every 3 weeks I believe.

If you're going through hell, keep on going. You might get out before the devil even knows you're there. Dx 1/18/2012, IDC, Left, 2cm, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/31/2012 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/31/2012 Reconstruction (left); Reconstruction (right) Dx 12/23/2015, IDC, Left, 2cm, Grade 2, 10/14 nodes, ER+/PR+, HER2- Surgery 1/18/2016 Lymph node removal: Left, Underarm/Axillary Surgery 1/18/2016 Prophylactic ovary removal Radiation Therapy 2/10/2016 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy 3/31/2016 Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Jul 11, 2019 07:41PM exbrnxgrl wrote:


Congrats on NED! I just hit 8 years of NED. I will never know with certainty why I have done so well, but unless there is some very strong, research based evidence to the contrary, I will continue to swallow that little pill each night. I would feel too insecure not to, and I know I would feel horrible if I progressed after I stopped taking it. That is me, however, and you may feel differently.

I agree with the other ladies that this seems like a very good time for a second opinion. Take care

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
Log in to post a reply

Jul 11, 2019 10:03PM Jude2 wrote:

Thank you all for your reply. I've never heard of stopping treatment with stage 4 even with NED and don't believe I will.My doctor said she will do what I'm comfortable doing but I agree a second opinion is a good idea. My cancer grade is 1 so slow growing and estrogen positive. In 2006 at initial diagnosis I had lumpectomy, 7 rounds of chemo and 33 radiation treatments. Then 4 years later progressed to single bone met. It is hard to know sometime the best course of action.

Log in to post a reply

Jul 12, 2019 03:29AM Moderators wrote:

Congrats on 8 years, Jude2! We completely understand that the worry never goes away, and we second what some others have suggested as far as getting a second opinion. Please keep us posted on what you decide!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...

Page 1 of 1 (6 results)