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Topic: Kicked out of BC Clinic because I hit 10 years

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Apr 11, 2019 02:33AM - edited Apr 11, 2019 02:35AM by Meggy

Meggy wrote:

I'm frantic...my BC clinic is literally telling me that because I am 10 years post treatment, I can't come back. I have been feeling overwhelming fatigue for months and I had an appointment that I waited months for but my oncologist retired without warning and so they simply cancelled my appointment. Its a huge clinic. Now I'm told I can't come back. I am scared about what might be going on with my health.

Is anyone on here still allowed to go to your oncologist even though you are 10 or more years out? I'm truly outraged. They are even referring to me as a "new patient" even though I did all my treatment there and have been a patient there ever since.

I cried all night after I heard their message. I keep telling them that I feel all consuming fatigue and they don't even respond to my statements.

Meggy


See my 10 years out post regarding my extensive treatment. Triple Negative IDC Neoadjuvant chemo 2/08 of 4 dose dense A/C then 4 Taxol, Then Bilat in 6/08, then 2 more AC, then 4 Carboplatin/Taxotere. Then Radiation. Node Positive (5+). Dx 1/9/2008, IDC, Right, 2cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 2/2/2008 AC + T (Taxol) Surgery 5/10/2008 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 6/4/2008 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/10/2008 Breast, Lymph nodes Dx
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Apr 11, 2019 03:28AM AliceBastable wrote:

Can you go to your primary care doctor first, then get a new referral to the breast center? Or it may be something else going on that would require different screenings and specialists.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Apr 11, 2019 10:36AM santabarbarian wrote:

Can you contact your old MO and ask him/her to refer you to a new MO?

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Apr 11, 2019 10:50AM Flynn wrote:

I’m sorry that you’re so stressed out. Are you under the care of a primary care dr? It might be reasonable to start there with basic labs, etc. Asking for a new MO may also work but could prove more challenging after this length of time. Good luck and KUP.

Dx 2/2017, IDC, 6cm+, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 2/28/2017 AC Chemotherapy 8/31/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 1/31/2018 Whole-breast: Breast, Chest wall Chemotherapy 8/1/2018 Xeloda (capecitabine)
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Apr 11, 2019 11:08AM WC3 wrote:

Meggy:

That sounds very strange and that they just cancelled your apoointment like that might constitute patient abandonment and violate patient abandonment laws. I would take this up with the center's office manager or director.

Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin)
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Apr 11, 2019 11:56AM bcincolorado wrote:

Wow! Asking your primary doc for a new referral I would think would not be out of line at this point. I had my original MO retire and before he did I was told he was going to and that he was referring to another MO in the same practice. They should transfer the records to another doc at no charge I would imagine if they ask for them. If you have ability print out information from their web site for your new MO you might want to get that done as well so you have them. It probably will not include all the doc notes but at least the basics for your new practice. Best of luck to you.

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/6/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/14/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/29/2016 Femara (letrozole)
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Apr 11, 2019 12:00PM Trishyla wrote:

It actually doesn't seem strange at all. I'm surprised they kept her as long as they did. According to her stats, she's triple negative. You are considered "cured" after five years disease free. Your recurrence rate basically drops to exactly the same as any other woman your age who has not had breast cancer. So any cancer would be considered a new primary.

I agree with Alice. You should go to your primary care doctor for tests. It's much more likely to be a thyroid issue than your triple negative cancer coming back. You really should consider yourself cured of the original cancer.

Best wishes.

Trish


Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Apr 11, 2019 08:07PM - edited Apr 12, 2019 01:51AM by Meggy

Trishyla, this was posted in a triple negative thread, so yes, I'm triple negative. You are absolutely wrong about the "cure" of triple negatives. I'm guessing your not an expert in Triple Negatives. After 5 years we go down to a lower risk (possibly around the same risk rate as ER/PR positive patients, but this is not actually known. We are a relatively newly identified form of breast cancer and there aren't good studies to tell us our risks after 5 years.)

Here's a portion of an article:

Long-term survival outcomes of triple-receptor negative breast cancer ...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5765226/

by SM Reddy - ‎2018 - ‎Cited by 3 - ‎Related articlesBackground: We counsel our triple-negative breast cancer (TNBC) patients that the risk of recurrence is highest in the first 5 years after diagnosis. However, there are limited data with extended follow-up on the frequency, characteristics, and predictors of late events.

Thisyla, please change your post. I don't want any of my triple negative sisters to read it and then wrongly think they are "cured" at the five year point. That is not the case. That claim could put someone at risk.

See my 10 years out post regarding my extensive treatment. Triple Negative IDC Neoadjuvant chemo 2/08 of 4 dose dense A/C then 4 Taxol, Then Bilat in 6/08, then 2 more AC, then 4 Carboplatin/Taxotere. Then Radiation. Node Positive (5+). Dx 1/9/2008, IDC, Right, 2cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 2/2/2008 AC + T (Taxol) Surgery 5/10/2008 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 6/4/2008 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/10/2008 Breast, Lymph nodes Dx
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Apr 11, 2019 08:08PM Meggy wrote:

Unfortunately, my insurance only covers the clinics at this very important institution if I am an existing patient. If I do get "referred in" as a new patient, I have no insurance coverage.

See my 10 years out post regarding my extensive treatment. Triple Negative IDC Neoadjuvant chemo 2/08 of 4 dose dense A/C then 4 Taxol, Then Bilat in 6/08, then 2 more AC, then 4 Carboplatin/Taxotere. Then Radiation. Node Positive (5+). Dx 1/9/2008, IDC, Right, 2cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 2/2/2008 AC + T (Taxol) Surgery 5/10/2008 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 6/4/2008 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/10/2008 Breast, Lymph nodes Dx
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Apr 11, 2019 08:45PM - edited Apr 16, 2019 03:14AM by HappyAnyway

This Post was deleted by HappyAnyway.
Like... existence could be beautiful, or it could be ugly. But that's on you. Mr. Robot Dx 4/10/2019, IDC, Right, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (IHC) Chemotherapy 4/25/2019 AC Chemotherapy 6/20/2019 Taxol (paclitaxel) Chemotherapy 7/18/2019 Carboplatin (Paraplatin) Surgery 10/29/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/1/2019 Xeloda (capecitabine) Immunotherapy 1/16/2020 Radiation Therapy 6/7/2020 Whole-breast Dx 10/2/2020, Left, Stage IIIC, Grade 3, ER-/PR-, HER2- Surgery 11/3/2020 Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap Chemotherapy 12/2/2020 Halaven (eribulin)
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Apr 11, 2019 10:41PM - edited Apr 12, 2019 01:51AM by Meggy

Trishyla, your post makes untrue statements about Triple Negative BC. We are not "cured" at the 5 year point. Your statement that any new cancer would be considered a "new primary" is also not true. When our cancer returns, it's stage 4 TNBC. Your statements are not based on science or any sort of studies. They could mislead someone with TNBC and put one of our TN sisters at risk. Please delete your post.

See my 10 years out post regarding my extensive treatment. Triple Negative IDC Neoadjuvant chemo 2/08 of 4 dose dense A/C then 4 Taxol, Then Bilat in 6/08, then 2 more AC, then 4 Carboplatin/Taxotere. Then Radiation. Node Positive (5+). Dx 1/9/2008, IDC, Right, 2cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 2/2/2008 AC + T (Taxol) Surgery 5/10/2008 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 6/4/2008 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/10/2008 Breast, Lymph nodes Dx
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Apr 12, 2019 12:07AM - edited Apr 12, 2019 12:16AM by Cowgirl13

This Post was deleted by Cowgirl13.
Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/16/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Apr 12, 2019 12:42PM santabarbarian wrote:

Meggy there may be a differentiation between people who get a strong response to chemo, and those who don't. Also what stage you are when treated. Among people w pCR, very few (almost zero) have recurrences after 5 years. Pretty much the same risk as general population. My MO told me he'd never seen a recurrence of TNBC beyond 3 years out.

I sympathize w not wanting to leave your med facility and hope you can work up the chain of command till you find someone sympathetic to keeping you there...

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Apr 12, 2019 12:57PM wrenn wrote:

My oncologist discharges patients 2 years after the end of treatment. I was told to go to my primary care person with any concerns. That person can refer you back to the same oncologist or a different one if there is a concern that the cancer has returned but the primary care person refers for any procedures to try to find out what the problem is. Any CT Scans or blood work I have done when I worry is done by the primary. It is only referred after investigations point to it being cancer.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Apr 13, 2019 04:40PM Moderators wrote:

Dear Members,

We have been following this discussion and we have asked some of our professional advisors to offer guidance around some of the facts mentioned. Namely we want to fact check the following:

  1. Whether or not a TNBC recurrence is automatically stage IV
  2. Whether any new TNBC tumor (recurrence or not) would be considered a new primary
  3. How is breast cancer recurrence risk for TNBC after 5 years and after 10 years compared to average woman's risk
We are not concerned about who is right or wrong here but thought it would be helpful to consult some of our professional experts so as to have accurate information on this important topic. We will keep you posted as we learn more.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 13, 2019 05:41PM Trishyla wrote:

Thank you. Moderators. I think this a great topic for further research. We all want to have the best, most up to date information to help guide us in this journey.

And to the OP, Meggy. I did not mean to offend, only to help. Hope all is well with you.

Trish

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Apr 13, 2019 08:37PM TB90 wrote:

I am confused. I am not triple negative, but never heard about any recurrences ever automatically becoming Stage IV. Unless I am missing something, and I often do as of late, I am equally shocked that the mods are even looking into this. I have mixed feelings about being kicked out of cancer care. When I was, twice, only show my BC stats, I have never been so relieved! I hate going there. Canada is diligent about getting patients out asap. But I also understand the feeling of vulnerability, especially if you are not feeling well and strong. My RO assured me that any time I wanted to contact him, I could. He stated that very few patients want to come back unless they absolutely have to. But I did like that connection. Unless he leaves or retires. But I could get referred back by my primary care physician anytime. Perhaps in the States it is not so easy or perhaps insurance is affected. But after 10 years, although we are never cured, you have done so well! They may be suggesting that your odds now of recurring as so low, that this level of monitoring is no longer necessary. But I hope you can find a level of care that is caring and reassuring. And has the expertise that is needed. Wish we could just go to the zoo instead and release that monkey that we all have on our back. Take care

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/18/2013 Mastectomy: Left Radiation Therapy 2/20/2014 Breast
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Apr 14, 2019 07:07AM NancyHB wrote:

Meggy - I’m sorry you’ve been so discourteously kicked to the curb by your MO. I know after my first dx I was switched to a “survivorship” program after the first two years which was intended to follow me for an additional 5, then they’d turn me loose with no further follow-up. It was a scary prospect but all along they kept saying if I got to that point with no recurrence my stats would be that of an average woman and there’d be no need to follow me closely. My recurrence sorta blew that out of the water, but anyway...

I can’t speak to Meggy’s intention but I can say that my MO said frequently that local recurrence was rare, and when he talked about “recurrence” he meant mets, so I can see Meggy’s point about recurrence being stage IV. I had either a local recurrence or a new primary (there is debate between 2 docs and it’s a long story I won’t repeat here) that was TN. I now have mets.

TN is a particularly nasty and scary beast because we don’t have the safety net of Tamoxifen and AIs, so I feel for you, Meggy. All I know is what I’ve read and been told, and getting to 10 years recurrence-free is something to be celebrated!! You may never feel like you’re past this disease, and you’ll be ever-vigilant about watching for signs of recurrence, but I hope you find some peace, too, in the length of time you’ve been disease-free. You fought really hard through treatment so you can live your life; I hope you can enjoy some peaceful moments after all these years.
"Be happy for this moment. This moment is your life." - Omar Khayyam Dx 11/22/2011, IDC, Left, 1cm, Grade 2, ER+/PR-, HER2- (FISH) Surgery 12/4/2011 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/18/2012 AC + T (Taxol) Radiation Therapy 6/11/2012 Whole-breast: Breast, Lymph nodes Dx 1/27/2016, IDC, Left, 1cm, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 2/14/2016 Lumpectomy; Lymph node removal: Left Chemotherapy 2/29/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/20/2016 Mastectomy: Left; Reconstruction (left): DIEP flap Dx 1/31/2017, IDC, Stage IV, metastasized to bone
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Apr 14, 2019 10:37AM santabarbarian wrote:

TB90-- the difference with TNBC is it is one of the cancers that CAN be cured... and it looks like OP may be one of the cured ones. Yet that can be really frightening to count on, so I can see why it's scary not to be on the followup plan.


pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Apr 14, 2019 11:39AM TB90 wrote:

I think the only way anyone will ever convince anyone with any type of breast cancer that they are cured, is to have a definitive test that states you are cured. Otherwise cured remains in the minds of very few who rely on something else to convince them. That is why everyone feels so damn vulnerable with this disease and the word cured means so little.

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/18/2013 Mastectomy: Left Radiation Therapy 2/20/2014 Breast
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Apr 14, 2019 12:32PM santabarbarian wrote:

Well the stats on TNBC say it can be cured. With TNBC patents who get a pCR, 90% will not recur. Ever. 90% of pCR achievers will be cured of their cancer. That isn't perfect, because 10% will have a recurrence, but those will happen early in time. Unlike HR+ cancers, which can hibernate lengthy periods and then reemerge 20 years later.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Apr 14, 2019 12:59PM Whirlaway wrote:

My MO considers cured at 7 years out and at 5 years out, you are "pretty much home clear". 

I am not 3 years out yet, still getting MO appt. every 3 months with blood tests and so far had bone scans yearly. Surgeon sees me twice a year and orders mamo, ultrasound and often MRI. 

Initially, I was in a TN trial and they wanted to follow me for 10 years. I don't think I will ever feel cured, given how healthy and fit I was when I was diagnosed, but NED works for me. Another TN woman was unfortunately diagnosed with Stage IV two months past her 5 year mark. Not sure if she had pCR.

Meggy, wishing you the best!!

Dx 7/2016, IDC, Left, 6cm+, Stage IIB, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 8/30/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 10/18/2016 AC + T (Taxol) Radiation Therapy 4/2/2017 Whole-breast: Breast
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Apr 15, 2019 03:59PM Moderators wrote:

Dear Members,

This is a follow up to our previous post on April 13.

We have checked in with some of our experts and are offering information that we hope might help with this important and complex discussion. It is important to state at the outset that there are no real absolutes. Every situation is different and the best source of information about one's cancer and cancer treatment is always with one's medical care team.

Whether or not someone is released from a medical oncology practice after ten consecutive years of being disease-free, regardless of initial diagnosis, is likely dependent on one's health insurance, the particular cancer treatment center, and one's individual disease characteristics. In general we do hear that many people end up returning to the care of their general practitioner or internist after a number of years of being cancer free.

In looking at the study provided in the topic: (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5765226/), some TNBC recurrences were distant, some were local, and some patients developed a "second primary cancer" but we don't have the characteristics of those tumors in the manuscript - so again the answer would be highly individualized, but "automatically stage IV" appears incorrect.

Regarding the TNBC late recurrence risk, the study authors concluded:

"In clinical practice, we generally reassure our [TNBC] patients and their families that the risk of breast cancer recurrence is minimal once they have survived for 5 years without disease. Although this is generally true, we found that 5% of these survivors will have a breast cancer recurrence within the subsequent 10 years. … Overall, this study highlights that although TNBC patients have a lower late event rate than other breast cancer patients, there is still a small subset of patients who experience late recurrence."

However, comparing this to an average woman's risk wouldn't really work, since we'd be talking about the average woman's risk for a primary breast cancer (12% lifetime if you live beyond age 80) rather than a recurrence – it's not apples to apples, so it would probably be confusing.

The Mods



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Apr 15, 2019 04:55PM - edited Apr 15, 2019 07:22PM by Meggy

I never said all recurrences are "automatically" stage 4. It also needed to be read in context. I was countering the statement that said literally "any cancer [of TN BC after 5 years] would be a new primary." That is clearly not true. I posted that I am deeply tired. I am TN and posted in the TN thread. To someone with TNBC, it is a given that I am worried about mets.

My Stanford oncologist, who just retired, said that there is no cure date for TNs.

I've always come on here for support. I've always walked away feeling supported and hopefully giving support. But being told in third person that I was long since cured and that it was surprising that I was allowed an oncologist even before this point made me cry.

There are TN ladies on this site who have recurred beyond 5 years.....as far away as 10 years and I don't want them to read posts that trivialize our risk of recurrent TN BC. It is a tough diagnosis and the fears and risks of recurrence continue beyond 5 years.

The reason why I am so adamant about making this point, is that I've spent 10 years posting on this site to help spread the word to my TN sisters about how TNs can lower their risk of recurrence. I don't want my sisters to throw out that information once they hit 5 years and then negatively change their outcome.

After chemo ends, we get no more treatment (unless we are part of a study). We don't have targeted therapy. But we do have other weapons such as the low fat diet and exercise. These are large study-based conclusions. The low fat diet only lowered the recurrence rate for triple negatives and it lowered it significantly.

NancyHB sending you a big hug and will be thinking about you. Thank you for your words.




See my 10 years out post regarding my extensive treatment. Triple Negative IDC Neoadjuvant chemo 2/08 of 4 dose dense A/C then 4 Taxol, Then Bilat in 6/08, then 2 more AC, then 4 Carboplatin/Taxotere. Then Radiation. Node Positive (5+). Dx 1/9/2008, IDC, Right, 2cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 2/2/2008 AC + T (Taxol) Surgery 5/10/2008 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 6/4/2008 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/10/2008 Breast, Lymph nodes Dx
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Apr 15, 2019 11:20PM TB90 wrote:

Dear Meggy: I am so sorry you experienced this. I once had a thread get away on me and I had to ask the mods to stop it. I was devastated. So many posters lose sight of the original post. It becomes their issues and their agenda. I do not want to diminish your concerns, but women new to this experience just struggle to cope and are not in the best place to put your needs first. We are all in a different place and I have expressed this on other threads, but we are not all able to be supportive yet. Or able to think outside of our own experiences. Self help forums are far from perfect, but like you, I have experienced amazing support and sharing of knowledge. Please do not give up on us. Our intentions are much greater than our personal limitations due to this aweful disease. Would love to be here for you or to stop this thread. Your choice but know we care, even when it dies not always seem that way. Any sorry if I am speaking on herald of others. I really have no right

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/18/2013 Mastectomy: Left Radiation Therapy 2/20/2014 Breast
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Apr 15, 2019 11:21PM TB90 wrote:

behalf. Damn autocorrect.

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/18/2013 Mastectomy: Left Radiation Therapy 2/20/2014 Breast
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May 30, 2019 12:28PM - edited May 30, 2019 04:42PM by Kayrem

Hi Meggy - was hard to decide if I should let this thread remain inactive and pm you or if I should reawaken it. I decided that I would post.

If you can go to a regular doctor and get blood work done that would be a first step. I have also been tired for months. I told my husband that I had not felt so tired since I was on chemo. It is fatigue. Don't know what causing it but I am pretty sure it is not cancer as I just recently (6 months ago) had a CT scan which was all clear.

My RO discharged me at 5 years (which was 2 years ago) but said if I needed him I could call. Well I needed him last October because my asthma flared and I thought I had lung Mets. I called him on a Wednesday, he had me in on a Friday, bloodwork by Tuesday and CT scan within two weeks. For Canada (specifically Winnipeg) that is incredible timing. He reacted pretty quick and did not ever tell me that I was “cured" after 5 years. He did say my risk was reduced. I guess what I am saying is your diagnosis line and symptoms play a big part in how worried you/I get and how serious they take you. I know why you are worried! We have a similar diagnosis.

You have been through so much over the years. I do not come back to the boards often but when I do I always look to see how you are doing. When I was first diagnosed You gave me so much hope. You made me feel like I could take some control over a totally uncontrollable situation. I talked about you so much to my husband, my friends, it was like I knew you personally. I even private messaged you once over the years. Your posts got me through a very tough time.

The whole cured or not cured thing is hogwash. One woman said earlier (years ago) in a different thread that the stats are 100% you will recur or 0%. I thought that was funny/odd at the time but I get it now. You do or you don't.


Dx 6/13/2011, IDC, 2cm, Stage IIIA, Grade 3, 4/11 nodes, ER-/PR-, HER2- Surgery 6/29/2011 Lumpectomy: Right Chemotherapy 9/14/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Radiation Therapy 2/20/2012 Breast, Lymph nodes Surgery 3/13/2013 Prophylactic mastectomy: Left, Right Surgery 5/20/2013 Prophylactic ovary removal
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May 31, 2019 06:47AM Mavericksmom wrote:

I had a 1 cm IDC in 2003. Almost 16 years later, I was diagnosed with ILC. Ironically I too had stopped seeing anyone for follow ups years ago and sought help from my PCP for fatigue. He found nothing. This was in the fall of 2018. I saw 4 specialists after I saw my PCP, for various reasons, but told each about my fatigue! I was told by each to exercise more! The last test I had, a diagnostic mammogram, was done in November. (My doctor wrote the script in September!) That lead to a biopsy and diagnosis of ILC. I still don't believe my fatigue was from the cancer, but I feel worse due to treatments, and I struggle with it every day.

Breast Cancer can't be cured! If you believe that you are living a lie! My doctors in 2003 told me they thought I was cured but were not allowed t say that! I wasn't cured. That said there is a fine balance between being vigilant with follow ups and not living in fear of recurrence. Worry, like anger, robs your life of joy!

Definitely see a primary care doctor for your fatigue. I think part of the problem with MO's is that most work with patients who have all types of cancer and cancer is so prevalent that they become overwhelmed with patients. The clinic most likely feels that after 10 years their patients with breast cancer can be adequately monitored by PCP's. Most breast cancer patients won't get a recurrence.


Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)

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