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Topic: Does you oncologist every release you?

Forum: Stage III Breast Cancer — You are not alone. Meet others who have Stage III breast cancer.

Posted on: Feb 15, 2021 02:23PM

Outfield wrote:

I guess I thought he'd be letting me go at the 10 years on AI mark. Wrong on 2 counts, he is not letting me go and he is not stopping the AI. He knows we're on swampy ground with the AI decision, but I think he sees me as too high risk to stop until there's some sort of blood biomarker we can follow.

Any others of you still stuck with your oncologists this far out?

I don't dislike him and the visits aren't a big deal. It's mostly because I wish I could just forget about cancer, but really it's not that I wish I could just forget about it - I wish I could forget about it and know it would never come back. Forgetting about it and then being blindsided by a recurrence seems no better than having had it lurking in my mind. What I really want is the magic assurance I won't have to die from it.


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Feb 15, 2021 03:26PM trinigirl50 wrote:

Unfortunately there is no magic assurance.

I still see my MO every 3 months but I plan on telling him every six months is enough for me. After I get to 10 years, then once a year will have to do.

I too would like to see the future but ONLY if it says no more cancer.

trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/14/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Feb 24, 2021 04:55PM hopefour wrote:

I still see my oncologists every 6 pos but now see his PA on one of those visits. I too continue on hormone blocker at my request. As you said it would be so very lovely for someone to tell me it will never come back...can't imagine the joy of that freedom...but very grateful for the 10 years so far!

Dx 5/2011, IDC, 1cm, Stage IIIA, Grade 1, 4/22 nodes, ER+/PR+, HER2-
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Feb 24, 2021 10:47PM Outfield wrote:

Me too. When I think about it, I'm so glad for my 10 years. When I was diagnosed my kids were 2 and 3 and I was scared I'd be gone before they were old enough to remember me. I am very, very grateful.

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Mar 28, 2021 06:31PM kathleen1966 wrote:

this isn’t probably good advice, but I stopped going to my oncologist after 4 years. I went to every six months and the tumor marker test just caused me stress. I had no other scans or tests and I didn’t see the point of a tumor marker test only. I could get that at a pcp’s office. I have my yearly mammogram but also stopped getting a yearly MRI. I stopped this because it caused me soo much stress to begin with and the last time I went, my IV popped out, I told them I felt warm liquid running down my arm and they told me it was fine. Then the machine broke and after being stuck in there, they took me out and I was in a pool of blood. So that was the end of that for me. I figured, if I have symptoms-I will go to an oncologist. I am now in my 11th year of remission. I know this may not be great advice, but it has worked for me. It’s been 7 years since I’ve seen an oncologist.

Dx 7/26/2010, IDC, 1cm, Stage IIIA, Grade 2, 4/15 nodes, ER-/PR-, HER2+ Dx 7/26/2010, DCIS, 6cm+, Stage IIIA, Grade 2, 4/15 nodes, ER-/PR-, HER2+ Dx 7/26/2010, Paget's, 1cm, Stage IIIA, Grade 2, 4/15 nodes, ER-/PR-, HER2+ Surgery 8/22/2010 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 9/6/2010 Herceptin (trastuzumab) Chemotherapy 9/6/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 2/28/2011 Breast, Lymph nodes
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Mar 29, 2021 05:35AM Newnorm wrote:

Outfield I feel exactly the same. Oh how I wish I didn't have to think about cancer ever again. I also would love to know for sure that I won't die from it. Sadly neither will ever happen. So I do my best to think about it as little as possible. Of course every ache or pain that lingers for more than a week makes me anxious, but so far anything that I've thought required a scan has ended up being nothing serious. I see my Onc once per year and have a Mammogram and ultrasound every year. I think I'll continue this for at least ten years and hope to be on AI forever. Fingers crossed we can all continue to dodge another bullet until they find a cure

Dx 12/23/2016, IDC, Left, 6cm+, Stage IIIB, Grade 2, 6/17 nodes, ER+/PR+, HER2- Chemotherapy 1/6/2017 AC + T (Taxol) Hormonal Therapy 7/27/2017 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/28/2017 Lymph node removal: Left; Mastectomy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 30, 2021 01:30PM karen1956 wrote:

At 5 years I went from every 3 months to every 6 months - ten years later I'm still every 6 months (15 years out from Dx)- my next appointment is in 10 days and I get my Prolia shot (#4).

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Mar 31, 2021 03:51AM - edited Mar 31, 2021 04:00AM by Jinx27

My appointments got more spaced out after chemo. I started hormonal therapy and my visits continue to be about that.

Im concerned about you taking AI past 10 years.There is data showing there is no residual benefit from that. Maybe its age, higher risk for a recurrence?

I read on MD Andersons website that anyone with a high risk like hereditary mutations etc should press for an MRI every year. However this was info for those not diagnosed yet. So maybe keeping your Dr is worth it ❤

Diagnosed at 27 y/o, synchronous bilateral breast cancer. L. Breast : IDC, R. Breast: DCIS. ER 98%, PR 100% Possible mutation. 5-10 yrs hormonal therapy 08/31/2016 Tamoxifen, 02/01/2017- 06/10/2021 AI + OS,Tamoxifen 08/10/2021 -current Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 3, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 1/1/2016 AC + T (Taxol) Hormonal Therapy 8/28/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
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Apr 2, 2021 01:46PM Kathleen26 wrote:

After 10 years, I released myself. My MO would not allow me to continue on the Tamoxifen, and had no other treatments to offer to prevent recurrence. They never did perform any tests. So I did not see the point in continuing to go so they could pat around on my chest once a year. I have a PCP that I see for general health, so unless something comes up, that is enough.

I would probably feel differently if I had not already had both breasts removed.

BRCA2+ Surgery 4/10/1990 Lumpectomy: Left; Prophylactic ovary removal Radiation Therapy 5/10/1990 Whole-breast: Breast Surgery 1/5/1996 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Dx 4/6/2010, IDC, Right, <1cm, Stage IIIC, Grade 2, 8/16 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 5/20/2010 AC + T (Taxol) Surgery 9/2/2010 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Radiation Therapy 11/8/2010 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/15/2010 Arimidex (anastrozole) Hormonal Therapy 5/15/2012 Aromasin (exemestane) Hormonal Therapy 9/14/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 2, 2021 02:30PM Outfield wrote:

Jinx27 he knows he's out of the world of recommendations. The problem is that the studies that have been done include mostly women 1) much older than I was at diagnosis (44) and 2) with less-advanced disease. There's also very little of anything going past 10 years. I think, honestly, that I scare him.


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Apr 3, 2021 10:04AM sugarplum wrote:

Hi Outfield - just chiming in here. I've been through a number of oncologists over the past 15 years, and they seem to be less and less involved with me as time goes on. This year I had a virtual appointment due to the pandemic and so he didn't even take blood or check my lymph nodes! He has now reached the point where he's threatening to take me off Arimidex - apparently there's not enough data to prove it's doing me more good than harm at age 65. He'll make his final decision when we have a face-to-face meeting in June, after I get updated results on my cholesterol and bone density. I am terrified to stop taking it - what if it's the one thing that's kept me from recurring all these years? You can't prove a negative, after all.

Sigh. Life has no guarantees, especially in the BC world...

Julie

Keep calm and carry on.... Dx 4/28/2006, IDC, Right, Stage IIIC, Grade 3, 10/20 nodes, ER+/PR+, HER2- (FISH) Surgery 6/6/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/5/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/30/2006 Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/17/2006 Arimidex (anastrozole) Radiation Therapy 1/10/2007 Whole-breast: Breast

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