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Topic: Confusion about reoccurrence

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Apr 11, 2019 06:31PM

Rhiannon061 wrote:

Hey all, so I know I should’ve asked my doctor to elaborate more on this at my last appointment but I was kinda shocked/scared. I just completed treatment on March 19th and saw my onc for follow up and he mentioned that if my cancer was to ever come back that he could only control it and not cure it. Why is that? Is it because I’m considered high risk? I read so many stories where people beat cancer more than once and was just wondering how my situation differs. Any insight would be greatly appreciated.

Dx 5/4/2018, IDC, Left, 2cm, Stage IIA, Grade 2, 3/12 nodes, ER+/PR+, HER2- Hormonal Therapy 6/18/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Surgery 8/2/2018 Lymph node removal: Left; Mastectomy Chemotherapy 9/10/2018 TAC Surgery Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left
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Apr 11, 2019 07:54PM Jojobird wrote:

I asked my doctor this same question, and her response, gently, was along the lines of “We will work towards prolonging life as long as possible. While the possibility of a cure is still possible, with a recurrence, there’s a greater likelihood of metastases and/or chronic, lethal illness.”

BUT: Everyone is different. People can and do live long, active lives with stage iv disease. You are not a timetable or statistic.

I hope this helps.



My blog: pinkstinks.blog/ Dx 3/2016, IDC, Right, 6cm+, Stage IIIC, Grade 3, 21/21 nodes, ER-/PR-, HER2- Surgery 4/17/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Right Dx 4/2018, IDC, Right, 5cm, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 4/26/2018 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Apr 11, 2019 08:06PM - edited Apr 11, 2019 08:14PM by OCDAmy

Generally metastatic breast cancer is treatable but not curable. A local recurrence is curable

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 11/15/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Apr 11, 2019 09:06PM LaughingGull wrote:

If your cancer recurs, it may appear in the same area in which you had it the first time (in your case, left breast or axilla), or in a distant organ (bones, liver, lungs, brain); a distant recurrence would make you Stage IV. When you are Stage IV, the treatment would be palliative, not curative. For example, you would not get surgery to remove the tumour.

You are early stage, so your prognosis should still be good. Did she tell you are high risk? If you had chemo after surgery there is no way to tell how you reacted to chemo.

The end of treatment is a very fraught and depressing time. Take care of yourself.

AC, THP, AI (10y); H+P (1y); Nerlynx (1y); Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2+ (IHC)
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Apr 11, 2019 09:41PM illimae wrote:

The stats are that approximately 30% of lower stage BC patients do eventually become metastatic. Currently, there is no cure for cancer, however, many recover move on and enjoy many years cancer free until death from something else.

I don’t think it’s a matter of high risk, just the nature of the beast. A lot would depend on where it came back and the state of your health at that time. If ever diagnosed stage IV, the best case scenario is minimal spread and continued treatment for longer term survival. It’s a scary state having cancer at any stage but some stage IV patients do well, can have surgery, enjoy life (but differently) and may live for many more years. Medically, more is being learned everyday and I remain hopeful.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 11, 2019 11:57PM - edited Apr 12, 2019 12:01AM by buttonsmachine

Broadly speaking: A local recurrence (i.e. within the breast) can still be "cured," but it does mean you are at statistically higher risk for eventual distant recurrence. A distant or metastatic recurrence (i.e. to the bones, for example) cannot be "cured" at this time, but it can be managed.

It sounds like your doctor was referring to a distant recurrence type scenario. Also, it's not just your cancer - we are all in the same boat until better treatments come along. Take care, and congrats on finishing active treatment. :-)

Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/1/2017 Whole-breast Hormonal Therapy 5/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 12/27/2017 AC Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 5/1/2018 Lymph node removal: Right; Mastectomy Radiation Therapy 5/10/2018 External: Lymph nodes, Chest wall Hormonal Therapy 7/1/2018 Zoladex (goserelin) Chemotherapy 7/1/2018 Xeloda (capecitabine) Hormonal Therapy 1/15/2019 Aromasin (exemestane)
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Apr 24, 2019 12:50PM Elizabeth9 wrote:

I asked my doctor the same thing. Her answer was gentle, but disturbing. I think about it all the time. I was asking about regular scans going forward on various common metastatic locations...liver, lungs etc. She said, " If we discover mets, whether we discover it through a scan, or a year later once symptoms appear, the outcome and life expectancy is the same. Your quality of life is better if we wait for symptoms, because you won't have all that extra treatment / anxiety / intrusive care prior to symptoms." I am still WTF-ing in my head about this.

Elizabeth Dx 6/29/2018, IDC, Right, 3cm, Stage IIB, Grade 3, 2/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/30/2018 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left Chemotherapy 9/12/2018 AC + T (Taxol) Hormonal Therapy 1/6/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 1/16/2019 Whole-breast: Breast, Lymph nodes, Chest wall, Bone Surgery 1/10/2020 Prophylactic ovary removal
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Apr 24, 2019 02:57PM LaughingGull wrote:

Yes Elizabeth9, it’s very hard to wrap your head around that. But that is the science-based consensus and apparently the data is very clear -haven’t read it though but got this repeated by several oncologists. Once you are Stage IV, there is no such thing as a bit vs a lot and ultimately doesn’t make a difference.

Very hard pill to swallow Sad

AC, THP, AI (10y); H+P (1y); Nerlynx (1y); Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2+ (IHC)
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Apr 24, 2019 05:08PM KBeee wrote:

It's frustrating. The data on it is based on 2 studies in the 1990s. It irritates me because I feel like we'll never know if the same holds true with current advancements. I just accept it though, because I know that scans themselves can contribute to cancer, and my body does not need any help making cancer. It seems to do a good enough job of that on its own. It took time, but for now, I assume I am cancer free until proven otherwise.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Apr 24, 2019 05:34PM LaughingGull wrote:

To me, something that doesn't make sense is...if that is true, why do we do systemic treatment at all? I

f less or more distant disease is just as impossible to cure, why do we even bother with chemo for early stage breast cancers? But the consensus is also that early stage cancer with a few cells that spread to distant organs can be curable by chemo; however, it becomes incurable when big enough to be detected by scans or symptoms? That sounds like an arbitrary distinction to me.

AC, THP, AI (10y); H+P (1y); Nerlynx (1y); Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2+ (IHC)
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Apr 25, 2019 01:35PM KBeee wrote:

My guess is that if it is just a few cells, then they feel it is curable, but once it's set up shop into a detectable tumor it is not....just guessing though. Good question to ask MO at next visit. I'd be interested in the response.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)

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