Topic: Any local recurrence (within few yrs) early stage despite AI?

Forum: Just Diagnosed With a Recurrence or Metastasis — Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Jul 12, 2022 03:37PM

Posted on: Jul 12, 2022 03:37PM

happyhiker1 wrote:

I am curious whether there are many local recurrences of early stage BC even though a person has followed all treatment recommendations (lumpectomy or mastectomy, and endocrine therapy (aromatase inhibitor, etc).

I opted not to do the AI as was told that rad therapy was most important and AI would only add 3% protection, in addition to my low oncotype score (10). So I wonder whether others have been hit with a local recurrence despite having taken the AI. I worried about the side effects and already was (am) marginal osteoporosis and thought I could escape a recurrence. Now will have to have mastectomy and will attempt the AI.

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Aug 21, 2022 03:12PM mavericksmom wrote:

jeanwash, I hope you do well too! As for no way it is cancer in a fake breast, actually, it can be. There is no way to take all breast tissue out during a mastectomy. Some cells can't be removed. That said, I thought I had a recurrence in my "fake boob" in 2020 and it turned out to be fat necrosis. Hopefully that is all yours is.

Stay strong and wait for answers! You are right to get it checked out!

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-
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Aug 21, 2022 03:44PM exbrnxgrl wrote:

jeanwash,

Unfortunately, even with a mastectomy (with or without recon), not every single cell can be removed. Although not common, you can have a local recurrence in the breast area even after a mastectomy. Again, not usual but possible.

Whether one takes an AI or not will always boil down to a personal decision weighted heavily by your risk tolerance. Taking an AI is a tool in the arsenal but nothing will offer an iron clad guarantee against recurrence. Understanding what might or might not happen in the future and being able to accept a recurrence without regret should it occur may be helpful in your decision making process. Take care.

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Aug 21, 2022 06:17PM jeanwash wrote:

thank you for encouragement, exbrnxgrl and mavericksmom. I will come back here and let you know how I make out.


Happyhiker, I did complete 5.5 years of tamoxifen without too much difficulty. I actually wanted to stay on longer as it a was psychological crutch, I suppose. Everyone weighs things differently. I just wanted to throw everything at cancer from getgo with mx, tamoxifen and delayed reconstruction. I will let you know if this lump is reoccurrence. Good luck to you in your decision

Dx 5/6/2010, IDC, <1cm, Stage I, Grade 2, 0/9 nodes, ER+/PR+, HER2- Surgery 5/28/2010 Mastectomy; Mastectomy (Left) Hormonal Therapy 7/15/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/27/2017 Reconstruction (Left): DIEP flap
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Aug 21, 2022 06:57PM - edited Aug 21, 2022 06:59PM by jeanwash

This Post was deleted by jeanwash.
Dx 5/6/2010, IDC, <1cm, Stage I, Grade 2, 0/9 nodes, ER+/PR+, HER2- Surgery 5/28/2010 Mastectomy; Mastectomy (Left) Hormonal Therapy 7/15/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/27/2017 Reconstruction (Left): DIEP flap
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Aug 23, 2022 01:41PM happyhiker1 wrote:

Many thanks for all your replies, sorry to hear those of you with recurrences too. I guess there is no way of predicting which of us end up in that unlucky recurrence category, but just have to deal with it. I hope the medical community accelerates research into early detection through blood tests, I recently read about this in the UK, I believe.

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Sep 4, 2022 10:29PM - edited Sep 4, 2022 10:33PM by teacher30plus

I have just had DMX a week ago. I am still in shock that it came back almost identical to last tumor's makeup in almost the same spot. I did everything to keep it from returning, surgery, chemo, radiation, and AI for five years. I guess as soon as I stopped the Letrozole in Sept. of 21, it started growing again. Who knows?

Dx 11/13/2015, IDC, Right, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 12/4/2015 Lumpectomy; Lumpectomy (Right); Lymph node removal Chemotherapy 1/11/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/1/2016 Whole breast: Breast Hormonal Therapy 7/15/2016 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Dx IDC, Right, 1cm, Stage IB, Grade 2, ER+/PR+, HER2- Hormonal Therapy Aromasin (exemestane)
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Sep 5, 2022 12:15AM vale10 wrote:

Hi!

I was diagnosed with a local recurrence in Feb 2022. Original DX in 2017 was IDC Stage 1b ER + (10%) PR- and Her2+ . Had lumpectomy, TCH, Radiation and was prescribed AI. I chose not to take the AI. When I first got the recurrence DX, I felt terrible about not taking it but my Onc made me feel better about my choice. Everyone is different and responds to treatment differently. Despite Radiation, Chemo + Herceptin my cancer my came back. My guess is it probably would have come back even if I had taken the AI, so I'm thankful that for 5 years, I didn't have to deal with potentially icky SEs from the AI.

Having said that, cancer recurrence is scary and I have spent quite a bit of the last 7 months questioning why this happened.

My new DX is Multifocal Invasive Ductal Carcinoma, Grade 3, Stage 1 ER+, PR+ Her2+ and Extensive DCIS, Grade 3. Luckily no node involvement. Fingers crossed my mastectomy and current treatments will do the trick. As soon as Her2 targeted therapy is done, I'll be starting AI, not looking forward to it but I'm going to do it this time.

Take care everyone! May we all have excellent outcomes, because cancer really does suck....

Dx Left, <1, Stage IB, Grade 2, 1/1 nodes, ER+/PR-, HER2+, ISH Dx DCIS, Left, 6cm+, Stage 0, Grade 3, ER- Dx IDC, Left, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, ISH
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Sep 5, 2022 10:54AM threetree wrote:

Vale10 - I'm no expert by any means, but it seems that if you were only 10% ER positive, it made sense to not bother with the AI. I'm real sorry to hear about your recurrence. We all just live in constant fear of it. I hope things go well for you as time moves on.

It seems that no matter when someone stops taking the AI (or if they declined it initially), and they have a recurrence, it can always be blamed on taking the AI, either not at all or not long enough, but who would really ever know? It seems that no matter when a person stops the AI, any recurrence can be blamed on having stopped, or not started altogether, and yet that could well be a faulty assumption in many cases.

We cancer patients just can't seem to win no matter what we do.

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Sep 19, 2022 06:12PM jeanwash wrote:

Update.

I haven’t gone in to get checked yet. But I knew if I did I would be for biopsy. So instead I decided to massage and see if it could disperse the lump (if it was fat). Initially I felt a little give which motivated me. After persistent & a lot of massaging all day, for weeks… only a tiny bit of lump remains. I suspected it may have been from fat graft with the diep. I had lumps after surgery which I managed to masssge away. I just was so surprised that this large lump showed up 5 years after diep reconstruction. I will go in for annual check next month but I am pretty sure the lump will be completely resolved with my massaging by then.


I have to say that had I not had some experience earlier on, I would not have decided to massage first. I encourage everyone to get every lump checked.

Dx 5/6/2010, IDC, <1cm, Stage I, Grade 2, 0/9 nodes, ER+/PR+, HER2- Surgery 5/28/2010 Mastectomy; Mastectomy (Left) Hormonal Therapy 7/15/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/27/2017 Reconstruction (Left): DIEP flap
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Sep 26, 2022 09:43PM - edited Sep 26, 2022 09:44PM by edwards750

My sister had a MX and the cancer came back to the MX scar. It's scary that you can do everything you are supposed to and it doesn't seem to matter. Neither wonder we all cringe when someone tells us we are cured or since you are X number of years out no worries. If only…I am 11 years out and while I am more confident I know there are no guarantees because we are never totally out of the woods unfortunately.

Good luck!

Diane

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