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Topic: Help I have been diagnosed with IDC after a mastectomy

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Apr 19, 2017 03:36PM

Okimaw wrote:

I was diagnosed with DCIS 6 years ago and had a left breast mastectomy with reconstruction ( I opted not to get implants) . I was diagnosed last month with IDC on the same breast. I have had surgery to remove the small growth that was visible on my skin. It is ER/PR positive and HER2 negative. Im still waiting to hear about treatment. I am over 40 and premenopausal. Has anyone else had that happen who could give me some insight on what to expect?

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Apr 19, 2017 07:19PM bevin wrote:

No experience here with a recurrence, but I wanted to stop by and give my support. I know someone will be by soon who has had a similar experience. Good luck and keep us posted.

Age 45, Oncotype 11, Primary Tumor 2.1 cm, smaller satellite tumor nearby Dx 8/8/2010, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 8/10/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 10/10/2010 Breast
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Apr 20, 2017 08:18AM wallan wrote:

Hi Okimaw:

So sorry you are dealing with this again. For me, the second time around was easier on me physically, but very difficult emotionally. I am waiting to see if I need chemo again. My second breast cancer is ER+/PR+ her2- and I have negative lymph nodes. They sent tissue for the Oncotype Dx test which predicts recurrance risk based on the tumors specific characteristics. If the test comes back with a low score, there is a low risk of recurrance and I will not need chemo. First time around, I had a right mastectomy. This time around I had a left mastectomy and now I have also decided to do reconstruction.

Did you have the cancer return to your skin on the mastectomy side? I am curious to where specifically they found the IDC.

Hang in there. It does get easier as a treatment plan is put in place.

wallan

Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 6/1/2004 AC + T (Taxol) Radiation Therapy 12/1/2004 Whole-breast: Breast, Lymph nodes, Chest wall Dx 1/25/2017, LCIS/DCIS/ILC/IDC/IDC: Mucinous/IDC: Cribriform, Left, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 3/8/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 21, 2017 07:49AM Emily2008 wrote:

Hi Okimaw,

Yes, this happened to me. I had IDC on the left side, opted to have a double mastectomy because I found out I was BRCA 2 pos, then had chemo, and was on Tamoxifen for 6.5 years. 8.5 years after the first cancer dx, I was dxed again with IDC on the SAME side. I had surgery to remove it, and recently completed 30 rad treatments. I'm 44 and have been post-menopausal since my prophylactic hysterectomy and oophorectomy in 2010. I am currently on an AI.

I would guess that you will have to get radiation therapy and go on anti-hormonal treatment as well.

It's unusual to have a recurrence after a mastectomy, so they usually want to treat it aggressively. Your first dx was DCIS and mine was IDC (along with a little DCIS), so they may proceed differently with you, but I doubt it. The other thing you should ask about is whether you need staging scans (i.e. bone scan, CT, etc.). I never had those until my recurrence.

Of interest is the fact that there is some debate as to whether a re-diagnosis of breast cancer is a true recurrence or a new primary. The data says the average recurrence time is 4.7 years, so since you are 6 years out, this may be considered a new primary. The reason this matters is because you could have the sample sent out for Oncotype testing to see if chemo would be useful in your case.

Good luck, and keep us posted!

Dx 5/08, IDC, Left, Stage 1, Grade 1, BRCA 2 pos. Mast. w/TRAM and implant, A/C x 4, Tamox. for 6.5 yrs, ooph and hyst in 2010. Dx. 10/16, local recurrence, Left, Grade 2, breast segmentation, 30 rads from Jan-March 2017, then AIs. Dx 5/14/2008, IDC, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 10/31/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2-
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Apr 21, 2017 07:35PM wallan wrote:

Hey Emily:

So sorry this happened to you too.

Can you tell me where the IDC showed up after a mastectomy? Where is the breast tissue that is not removed? I am curious, but I am not having radiation on recommendation from the cancer centre after i was dx with my second breast cancer. I had a mastectomy. Since my cancer was multifocal and they admitted that a mastectomy was the proper way to proceed to prevent recurrance, it concerns me that I am not getting radiation now.

thanks

Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 6/1/2004 AC + T (Taxol) Radiation Therapy 12/1/2004 Whole-breast: Breast, Lymph nodes, Chest wall Dx 1/25/2017, LCIS/DCIS/ILC/IDC/IDC: Mucinous/IDC: Cribriform, Left, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 3/8/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 22, 2017 10:21AM Emily2008 wrote:

Hi Wallan,

The second IDC tumor showed up at around 5:00 on the outer left quadrant of my left breast. The first IDC tumor was in the same region, but at 2:00. The first time I had multifocal bc as well, which is why I had a mastectomy. The lumpectomy I had at first originally bisected a tumor that hadn't shown up on imaging. So rather than going back for another lumpectomy, I chose a mastectomy. Then 8.5 years later I had this second cancer.

I had always read that recurrences tend to show up in mastectomy scars, but this second one didn't. It was just hanging out in between the skin and chest wall, according to my MO. It was a palpable mass, which is why I found it.

Your signature says you had rads already, so is that why they're not recommending it this time?

Dx 5/08, IDC, Left, Stage 1, Grade 1, BRCA 2 pos. Mast. w/TRAM and implant, A/C x 4, Tamox. for 6.5 yrs, ooph and hyst in 2010. Dx. 10/16, local recurrence, Left, Grade 2, breast segmentation, 30 rads from Jan-March 2017, then AIs. Dx 5/14/2008, IDC, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 10/31/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2-
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Apr 22, 2017 05:50PM wallan wrote:

Hi Emily:

Thanks for the info.

I had radiation the first time on my right side. I had a mastectomy then too. I had positive nodes and lymphovascular invasion and poor margins with multifocal disease. So radiation was recommended.

This time I had 5 tiny tumors show up in the left boob. I was node negative. They had good margins. No lymphovascular invasion. So, they opted for no radiation because the breast surgeon, oncologist and radiologist said the mastectomy removed the cancer and there is likely no spread. I am still waiting for the oncotype dx test to come back to determine if chemo is necessary. The oncologist feels it is very unlikely. You just never know if you are getting the right treatment, you know? Last time, I obviously did get the right treatment because I have not had a recurrance of that actual cancer and it was 13 years ago. This time, I am leery of the treatment I am getting.





Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 6/1/2004 AC + T (Taxol) Radiation Therapy 12/1/2004 Whole-breast: Breast, Lymph nodes, Chest wall Dx 1/25/2017, LCIS/DCIS/ILC/IDC/IDC: Mucinous/IDC: Cribriform, Left, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 3/8/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 23, 2017 06:02AM Emily2008 wrote:

I can understand your concern, given what you've been through!

From what I know, you need to think of the cancer in your left breast as its own thing. In other words, your doctors aren't necessarily linking it to your prior cancer, so they're treating it like a new primary and using a treatment protocol that they would use if you've never had cancer before. So if a woman presents with 5 tiny tumors, no nodes, no LVI, and good margins, the standard of care is mastectomy without radiation, and chemo if the Oncotype score indicates it would be helpful.

I've gone through the same uncertainty. It's hard to view your new cancer as an independent event, but I believe that's how the docs are viewing mine (and yours). The only difference is that I've had a bunch of scans and will continue to have them over the next several years. This wasn't the case the first time I was diagnosed. I didn't have bone scans and CTs, just chest X-rays and blood work. So in that sense, my monitoring is different this time around, which I don't think I would have needed if I hadn't recurred. Also, I had rads this time even though there was no node involvement because A) the cancer came back in the same breast, and B) I had LVI. Also, I am BRCA pos, and apparently BRCA mutated cells are very easy to kill with rads.

Who knows? Sometimes I feel like we're all being played like a game of Russian Roulette.

Dx 5/08, IDC, Left, Stage 1, Grade 1, BRCA 2 pos. Mast. w/TRAM and implant, A/C x 4, Tamox. for 6.5 yrs, ooph and hyst in 2010. Dx. 10/16, local recurrence, Left, Grade 2, breast segmentation, 30 rads from Jan-March 2017, then AIs. Dx 5/14/2008, IDC, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 10/31/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2-
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Apr 23, 2017 08:56AM - edited Apr 23, 2017 08:57AM by misslil

Okimaw and other ladies here, sorry to hear you had a second instance.

I have as well, I was diagnosed with multifocal DCIS on the L side in 2008, treated with mastectomy and radiation followed by 5 years on tamoxifen.

Then last summer I had an area of IDC found on mammogram and confirmed with ultrasound & MRI. It turned out to be ER+/PR-/HER2+ on biopsy, I'm now in the process of finishing radiation treatment after surgery and neoadjuvant chemotherapy. The chemo substantially shrank the area (to ~1mm from 2cm) but didn't eliminate it. Nothing found on lymph nodes or otherwise to suggest so far that it's spread anywhere.

The latest area was on the same side I had the mastectomy and radiation, under the scar line from the mastectomy. It was in roughly one of the areas where I had DCIS in the past, but no idea if there's a relationship or just a random thing.

Doctors looking at the area found last summer have sometimes used the term recurrence, but basically they have been treating it as if it was a new standalone issue. The trickiest decision was whether to do radiation again. It was eventually recommended and I decided to do it so I was doing as much as I could to avoid a future recurrence / new issue.

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Oct 14, 2017 07:09PM - edited Oct 14, 2017 07:11PM by hopeful_36

misslil, I am very sorry about your situation. Mine is very similar - IDC 4 years post-mastectomy for DCIS. It appeared on the chest wall, above the scar line. For DCIS, I only had the dmx - no hormonal or radiation therapy. I've had lumpectomy 10 days ago, and they found one spot of DCIS on margins. Recommend to re-excize for clear margins. I am still thinking.

I've refused rads, and haven't yet seen an MO - who may want to put me on chemo. Which I'll also refuse. I decided to go alternative route. Surgery is the only thing I am open to. My firm belief is that our bodies need all our love, care and support to strengthen the immune system so it heals on cellular level from within, and not turning against it annihilating our physiology further damaging it with the poison and radiation promoting secondary cancers.This is my strategy, and I am willing to take associated risks, if I happen to be wrong in my belief system that loving and nurturing my body would have a greater benefit for healing.

Good luck in your journey. Wishing you a speedy healing, and absolute cure.

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