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Topic: new primaries 9 years later

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

Posted on: Sep 13, 2020 09:42PM - edited Sep 13, 2020 09:46PM by luvmytwins

luvmytwins wrote:

Hi all,

I have been off this forum for such a long time that I had to look up my log in information. I was originally diagnosed with ER+ PR+ Stage 1, grade 2 IDC in 2011 at the age of 49 and had a lumpectomy and re-excision (close margins) with 37 whole breast radiation treatments. I went on tamoxifen, which hyperstimulated my premenopausal ovaries, and in 2012, I had a hysterectomy/bilateral salpingo-oophrectomy. I switched to Femara shortly thereafter, but it made me feel ill, so we switched to exemestane which I've been taking ever since.

In 2006, I had a bad mammogram and biopsy, but it was just fat necrosis.

I was scheduled for my routine mammo in April of this year, but I put it off, because COVID. Oncologist office called me in June asking me if I wanted to reschedule myself or did I want them to? I rescheduled, but they were booking out till August at that point.

August 14 had my mammo--got called back in for additional films--then called back for US--you know the drill. Recommendation for biopsy of two new suspicious areas in the same breast. It took 6 days to get the biopsy and another 6 to get the result (You know COVID). Both are IDC, grade 3, ER and PR positive though not so strongly so. Had to get FISH for HER-2 status, but thankfully negative. Saw my previous surgeon same day of dx and she told us she was booking 3-4 weeks out. On 9/4, saw the plastics guy who told me he is booking 4-6 weeks out. Oh, yeah, I have to have a mastectomy this time because we can't do radiation twice. Decided on a double so they will match and I will never have to worry about a mammogram again.

OK, now i am 2 1/2 weeks from diagnosis and still don't have a surgery date. So I am going to Dana Farber next week for a second opinion. If they can get me in before November (which seems likely here in Upstate NY), I may just get the surgery there.

Part of me still can't believe this is happening all over again:(



Dx 2/4/2011, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Sep 14, 2020 12:29PM MinusTwo wrote:

luvmytwins - I remember you from 2011 - my first diagnosis too. I think going to Dana Farber for a 2nd opinion is a great idea. Hope you can get in before November. It would be nice to be healed before Christmas.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Sep 14, 2020 02:36PM Ingerp wrote:

I am really really sorry to hear this. I think some bodies just tend in this direction. Before my 2016 DCIS and 2018 IDC, I had ALH. Just a tendency toward wonky breasts. Best of luck with your treatment.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/22/2016 Lumpectomy Surgery 4/19/2016 Lumpectomy: Left Radiation Therapy 5/17/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/12/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/17/2018 Taxol (paclitaxel) Targeted Therapy 5/17/2018 Herceptin (trastuzumab) Radiation Therapy 8/19/2018 Whole-breast: Breast
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Sep 15, 2020 02:29PM Camama2 wrote:

So sorry you have to go through this. I am in a very similar situation. I was diagnosed at age 49 with TNBC, had a lumpectomy, TAC chemo, & 30 rounds of radiation. All was fine for 15 years and then in April of this year I felt a lump in the scar tissue of my lumpectomy. I was diagnosed with TNBC again. I also had to have a mastectomy because of prior treatment and chose to have a double. Just couldn't face going through it a 3rd time. Because I had my lifetime limit of Adriamycin 15 years ago I couldn't have anymore. I had surgery in May and started chemo in June. This time I'm having Taxotere and Carboplatin. I found out right before chemo started that Taxotere can cause permanent hair loss. I experienced partial permanent hair loss 15 years ago so decided to go the Penguin cold cap route. Tomorrow is my 6th and final chemo and I still have hair (thin but still hair). Chemo still isn't any fun but I'm almost through it, thank God! I did research on new treatments for TNBC and discovered a study for women in my situation where Xeloda is given at half dose for one year. So I will be starting that about 4 weeks from now. My 24 year old daughter asked me if it was worse the first time or this time. Can't really come up with an answer because the not knowing and thinking the worst the 1st time was bad but the knowing what I'm facing and dealing with Covid this time is equally bad. I know how you're feeling, I get it. Feel free to PM me if you'd like. Hang in there, you did it before you can do it again!

Laurie Dx 6/24/2005, IDC, Right, 5cm, Stage IIIB, Grade 3, 2/17 nodes, ER-/PR-, HER2- Surgery 7/21/2005 Lumpectomy; Lymph node removal Dx 4/29/2020, IDC, Right, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (IHC) Surgery 5/13/2020 Mastectomy: Left, Right; Prophylactic mastectomy: Left Chemotherapy 6/3/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy TAC Radiation Therapy
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Sep 16, 2020 07:19PM etnasgrl wrote:

(((((Hugs))))) I so get it!
Was diagnosed in 2015 with Stage 1 IDC in the right breast. ER+/PR+/Her2-, node negative. Did a lumpectomy, followed by radiation and Tamoxifen.
In February of this year, was diagnosed with a new primary.....Stage 1 IDC in the left breast. ER-/PR-/Her2+, node negative. Did Taxol, am currently on Herceptin, and just had a bilateral mastectomy with immediate DIEP flap reconstruction.

To be honest, the second time around is so much harder than the first. Not because of the treatments, but because I can NOT believe I am going through this crap again. It's like a nightmare that I can not wake up from.

Diagnosed at 41. Diagnosed 2nd time at 45. Dx 11/5/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/9/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/12/2016 Whole-breast: Breast Hormonal Therapy 2/17/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/13/2020, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/24/2020 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 3/19/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Herceptin (trastuzumab) Surgery 8/20/2020 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Sep 16, 2020 07:43PM AmyCinny wrote:

You're not alone. My diagnoses were 18 years apart and I hadn't even thought about cancer for years.

My second, more recent diagnosis, in 2018 was a new primary. First time, I was ER/PR+, Her2Neu-. Did lumpectomy, AC chemo x4, radiation, and Tamoxifen - although I only made it 2 years 2 months on Tamoxifen because of horrendous side effects.

This time, I was even more strongly ER/PR+ and surprise, strongly Her2Neu+. I did a bliateral with DIEP reconstruction followed by 12 weeks of Taxol and Herceptin and then continued with Herceptin for the following 9 months. I started Arimidex a month after finishing chemo, but just stopped it because of unrelenting, increasing pain. I'll be trying Aromasin next.

Sorry you had to join the second timer's club, but just as with the first time, it's doable. Good luck with the second opinion.

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Sep 16, 2020 08:03PM - edited Sep 16, 2020 08:04PM by luvmytwins

Are you happy with the DIEP flap? I am thinking of trying to get my surgery at Dana Farber at this point, and they offer it there. My surgeon's office here majorly messed up---apparently the reason I don't have a surgery date 3 weeks after diagnosis is that the order was never sent to the scheduler. Long story short, I've been calling about a date since last Thursday, no one has been returning my calls, and today when I go the direct line to the scheduler this is what she told me. I called the surgeon's office back to leave a very frustrated message and still no one has called me back. And the plastic surgeon offered me only one option: silicone implants. Apparently no one in Upstate NY does flap procedures, or at least that's what I was told. Don't have a lot of confidence at this point. I DO have confidence in my oncologist, who referred me to DF. So I would feel comfortable with DF advising him on a treatment plan and him continuing to follow me.

Dx 2/4/2011, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Sep 17, 2020 12:47PM Camama2 wrote:

My plastic surgeon told me that because of my prior treatment with radiation she wanted to wait until I'm done with chemo to see how everything heals before we decide what type of reconstruction. She said the prior surgery and radiation as well as the new surgery could affect skin condition and blood flow so until chemo is out of my body I don't know what I'll have.

Laurie Dx 6/24/2005, IDC, Right, 5cm, Stage IIIB, Grade 3, 2/17 nodes, ER-/PR-, HER2- Surgery 7/21/2005 Lumpectomy; Lymph node removal Dx 4/29/2020, IDC, Right, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (IHC) Surgery 5/13/2020 Mastectomy: Left, Right; Prophylactic mastectomy: Left Chemotherapy 6/3/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy TAC Radiation Therapy
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Sep 17, 2020 01:59PM luvmytwins wrote:

Good to know! So did they wait to do your surgery till after chemo, or did they leave expanders in while you had the chemo?

Dx 2/4/2011, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-

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