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Topic: After 20 Years As a Survivor

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

Posted on: Aug 2, 2018 03:38PM

CorgiMomIA wrote:

I was just diagnosed with bc after hitting the 20 year survivor mark in February. I was originally diagnosed at age 40. Back to th awful waiting, the sleepless nights, the tears, the fear to plan anything in the future. I haven’t seen the surgeon yet, but know that radiation will not be an option since I have already had it. Things have changed a lot in 20 years and I am hoping for the better. I am grateful for 20 years without cancer and I hope for another 40 (may as well think big)!

Take Care All

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Aug 2, 2018 04:52PM bevin wrote:

goodness, I am sorry to hear this news. I am hoping you have a lot of family and friends around you to help. Let us know how you get on.

Age 45, Oncotype 11, Primary Tumor 2.1 cm, smaller satellite tumor nearby Dx 5/1/2010, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 8/9/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 10/9/2010 Breast
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Aug 2, 2018 06:11PM Rondeezee wrote:

So sorry to hear of your recent diagnosis. You are not alone. I am being treated with my second bought of breast cancer after 22 years! This diagnosis has blown the wind out of my sails! I am grateful that my recurrence was found at an early stage and I am having surgery on August 16. It’s been a long haul to get this far but I am ever so grateful. I have a ER/PR+, HER2-, non-aggBreast cancer that I am hopeful surgery and hormonal therapy will do the trick. Hang in does get easier.

Dx 3/28/2018, DCIS/IDC, Left, 2cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 8/16/2018 Mastectomy; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Aug 2, 2018 06:20PM ColleenS80 wrote:

Hi there,

I’m so sorry to hear you are dealing with this awful disease again. I wanted to let you know that there is another lady here (screen name Amica) that is dealing with a recurrence after 20 years as well. I thought you all may be able to support each other. We’ve been talking in the thread “Anyone want to sit and wait with me?” under the “waiting for test results” topic. You’re welcome to join us! <3

Dx 1/12/2018, IDC, Right, 1cm, Stage IIA, Grade 1, 2/13 nodes, ER+/PR+, HER2+ (IHC) Chemotherapy 2/7/2018 AC + T (Taxol) Targeted Therapy 4/4/2018 Herceptin (trastuzumab) Surgery 7/11/2018 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Hormonal Therapy 8/8/2018 Arimidex (anastrozole), Zoladex (goserelin) Radiation Therapy 8/12/2018 Whole-breast: Breast, Lymph nodes
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Aug 19, 2018 11:04PM - edited Aug 19, 2018 11:05PM by Jor

Add me to that list. Twenty one years ago at age 35 (baseline). I had lumpectomy with chemo and radiation. Just had a double mastectomy in June. Right side rejected the expander. Seeing PS on Tuesday.

The right side is so slow healing after the radiation years ago. Right now it feels hard again. I’m happy I won’t need chemo again but had no idea the healing would take so long.

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Aug 20, 2018 12:41PM JoE777 wrote:

my goodness, ladies.

Hate that news. I can't know how you feel that far out of treatment. Made it to five I think it was present in 2017 but was diagnosed February this year. DX metastatic to back and tiny suspicious points in both lungs. The good news is the new stuff out there. I have high hopes for you girls dispite the DX. Curious if y'all had recurrence or metastatic to far off places. Docs still scratching their heads. May have been triggered by not taking AIs the last 3 years but can't know. Hugs and peAce.

Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/4/2012 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 1/8/2018 Femara (letrozole) Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy Other Radiation Therapy External: Bone Targeted Therapy Kisqali
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Aug 20, 2018 02:09PM ksusan wrote:

Best of luck to you!

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 20, 2018 02:23PM Rondeezee wrote:

I was diagnosed with a new primary tumor in the left breast after 22 years. Original treatment was lumpectomy and radiation. I had a bilateral mastectomy with immediate diep reconstruction 4 days ago and my recovery has been unremarkable thus far. All indications, thus far, indicate that the new primary tumor is early stage..ER/PR+, HER2-, no node involvement, negative margins and a negative PET/CT SCAN. I am hopeful that I will only have to do hormonal therapy. This disease is can never let your guard down

Dx 3/28/2018, DCIS/IDC, Left, 2cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 8/16/2018 Mastectomy; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Aug 21, 2018 07:13PM - edited Sep 14, 2018 08:47PM by obsolete

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Aug 22, 2018 06:06PM itsthelittlethings wrote:

Wow, for a minute I thought I was reading my profile. I too was just diagnosed with a new primary after 22 years -- in the previously irradiated left breast. On July 4, 2018, I had a BMX (no reconstruction) and I'm currently undergoing chemotherapy (CMF -- six cycles) because I live in Ecuador (as an expat) and the MammaPrint was $5,000. My Ki67 was 32% (yikes!) and my 1.3 cm on breast MRI turned out to be 2 cm on pathology (yikes again!), so I just did the radical thing and went for the BMX and chemo (no lymph or vascular invasion, ER+/PR+, HER2-). I'm reading more and more of us who chose lumpectomy and radiation are now developing new primaries. I think it's a cruel joke that after 22 years, it has come back to haunt me (same size as the first time). I chose bilateral oophorectomy and five years of tamoxifen the first time (no chemo). I guess ER+/PR+ breast cancer can find its way back after 20-plus years (it's now considered the smoldering type). Oh well, I raised my boys, saw them graduate from high school and college, get married, dance at their wedding, see them start their careers, and hold grandchildren in my arms. I'm 62 and my first dx was at the age of 40, so I'm extremely grateful for that.

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Aug 22, 2018 08:09PM Georgia1 wrote:

Just wanted to wish all of you the best. I was diagnosed with a melanoma 33 years ago, thought I had paid my dues to the cancer gods, but was then diagnosed with breast cancer at age 59. I will be praying for all of you but it sounds like you are relentless and brave!!

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 25, 2019 10:37AM - edited Jun 25, 2019 10:41AM by AnitaLouise

My first BC was in 2003 (right breast). Lumpectomy and the margin was positive. Went in to get the second margin which was negative and so was the sentinel node at the time. A week later was informed that it was in my lymph nodes. Received double bagged chemo and followed by radiation. Was on Tamoxifen and then Arimidex for six years. Fast forward to 14 years. Just around Christmas/New Years 2016 I noticed that my right breast was getting smaller and my hair was falling out. I joked with my husband about how it reminded me of going through chemo. I found the lump near the first one, same breast. January 2017 had Bilateral Mastectomy and my nipples removed because it was ductal carcinoma, stage two both times. Believing that reconstruction on both would give a more symmetrical look, as told by my PS, I wasn't given the proper advice. You see, after radiation, your tissue is damaged for the rest of your life. That's why my breast was getting smaller. As far as my hair, I think my body knew something that I didn't. Alopecia Areata was my diagnosis (stress). I'm on Aromasin now. For the last two years I have had 3 fat graftings (the last one a little over a month ago) an infection, where they opened up, cleaned out and replaced my implants. All under a different PS because the first one thought they looked great. One was high the other low. One was larger than the other and the right one was closer to my armpit. I couldn't look at myself. After all of this, I'm still not happy. Ripples and a flat top where it should be rounded out. Radiation is and will always be the problem. So I give up. Going to finally schedule my tattoos for sometime in the Fall. Thinking about a small flower with a butterfly. Nipples are over rated at my age, lol. After reading about the woman who developed BC after mastectomy, I'll make sure that I get my MRI's when told to. I think every 3 years. I also experience pain off and on where the lymph nodes were removed. Over two years? Might be adhesions. I know that they can be very painful. Nothing like walking around in public holding onto the side of your breast to relieve the pain, SMH. I never fooled myself into thinking that it could never come back because even before the first I always knew that I would have two cancers. Just didn't know what kind. Crazy huh! Spoke with many women at the Susan Komen walks who's BC came back 20 years or longer after the first. You do learn a lot from other peoples stories. That is what this site provides for all of us. Listen and learn. Get second and third opinions. You are not obligated to your first choice of doctors. Good luck and God Bless everyone for a better future.

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Jun 25, 2019 07:34PM - edited Jun 28, 2019 01:32PM by Tmh0921

My first diagnosis was in 1999 (I was 27), stage 1 ER+/PR+, node negative. I had a lumpectomy, sentinel and Axillary node dissection, radiation, and Tamoxifen which I stopped after about 2 years to get pregnant. In 2016 I was Dx with ADH, last year I was Dx with ALH and DCIS, and last month I was Dx with IDC. I had a mammogram, ultrasound, and breast MRI prior to this latest biopsy and diagnosis. Mammogram and ultrasound say mass is 1.1cm at its largest diameter, MRI says it's 1.9cm. I hope it's closer to 1cm. The imaging also showed 2 suspicious nodes. I had an US guided biopsy of the mass and nodes. The pathology came back as benign in the lymph nodes, but as IDC for the mass. ER+ (95%), PR+ (69%), and HER2Neu negative. My KI-67 was 14%, and there was foci of lymphovascular invasion. Overall, current pathology is good, but I'm waiting on the pathology after my upcoming mastectomy and Oncotype test before I can relax.

Even though this is in the same breast as my original Dx, my oncologist is considering this a new cancer and not a recurrence (though it may be related to last year's DCIS). I've always known I was high risk for another BC due to my age at original diagnosis. When my radiologist ordered the breast MRI I had a strong gut feeling that this was going to be another cancer.

This time I'm having a BMX with left LAT Flap and implants. After surgery I will switch from the Tamoxifen I started taking again in 2016 to Ovarian Suppression + an AI. Clearly, with a new highly ER+/PR+ tumor, theTamoxifen isn't working for me.

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/15 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/30/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/4/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/2/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 3/24/2020 Femara (letrozole), Zoladex (goserelin) Surgery 7/15/2020 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 3/7/2021 Femara (letrozole) Hormonal Therapy 9/27/2021 Arimidex (anastrozole)
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May 4, 2020 08:13PM CCGirl wrote:

My first round of BC was in 1998. I was 45. The tumor was 1.1 cm and because the DX came out of nowhere, I just went along with whatever they recommended. I had a lumpectomy, a axillary node dissection (they weren't doing sentinel node testing then) and then had radiation. It was miserable. I have very fair skin, and I had blisters and a reaction to the sulfa drugs they gave me. After it was over, the skin and tissue inside my breast was so hard on the bottom, it felt like a bagel. I found out later that if I'd had a mastectomy, I could have skipped the radiation. Darn!

A few years ago, I went to a surgeon to see if I could have a double mastectomy as I was having this gut feeling it was going to come back. The insurance company turned me down flat. :( Darn again.

In January I found a lump in all of that hard tissue left over from radiation and got a mammogram in early March. How I found it is beyond me. I thought the tissue might be breaking up or something. They didn't find it on the mammo (too far down on the breast to get a good pinch), but found it with an ultrasound. The biopsy came back positive.

I had the double mastectomy I'd wanted before - in March - and now am having chemo. Thankfully they caught it early-ish. Because I didn't have any lymph nodes left under my arm, the diagnosis was sketchy. Fortunately, I had a PET Scan before the surgery just for that reason, and it was clear. The first test for HER2+ came back iffy. The FISH test on the biopsy was positive. But when they tested the mastectomy tissues, it came back negative- 1.3. The OncoType was 27, just over the line for chemo. I had my first treatment today.

I guess I learned a few things from this. First, I should have fought harder with the insurance company to have the mastectomy because if you have a gut feeling something isn't right with your body, you should act. Second, get the tests on the mastectomy tissue and not just on the biopsy sample because the MX sample is a lot larger. And third, even though it's almost impossible to do a good breast check on radiated tissue, if anything changes at all, get it checked out right away. Sometimes that's your only warning.

Sorry for this long message, but I'm really glad to have found this thread. I have been feeling like a freak for the past couple of months with what I thought was my weird situation. Although I am sorry you are all dealing with something like this after being blissfully free of BC for over 20 years, it helps to know you're not the only one.



Dx 11/22/1998, IDC, Left, 1cm, Stage IA, Grade 1, ER+ Surgery 11/22/1998 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 2/1/1999 Whole-breast: Breast Hormonal Therapy 3/1/1999 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/11/2020, IDC, Left, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/25/2020 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 5/4/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 4, 2020 11:12PM Zanie789 wrote:

In 1993 at 39 years old, I was diagnosed with BC in my left breast. I had a lumpectomy and very high-dose chemo (was in a BC trial). My lymph nodes were affected also. After 26 years cancer-free, at age 65 I had a secondary primary in my right breast. This time I had a mastectomy, since clear margins could not be obtained with 3 lumpectomies (the tumor was 2.1 cm, and the rest of the breast was filled with DCIS). Right after the mastectomy I developed a hematoma (bleed) at the surgery site and had to be whisked back to surgery. I need 4 units of blood after that. Had an expander implant inserted, but soon realized I was allergic to it (developed a severe red rash on chest). I also developed an infection and a seroma. Eventually I had the expander removed. So there will be no reconstruction for me! Now I am awaiting surgery to remove the excess hanging skin (from the skin-sparring MX), and at the same time have my one very large breast reduced in size. It's been quite a year! And all this during a pandemic!

Dx 1/2/2020, IDC, Right, 1cm, Grade 1, ER+/PR+, HER2- (FISH) Surgery 2/20/2020 Lumpectomy: Right; Lymph node removal: Sentinel Dx 3/5/2020, DCIS, Right, Stage 0, Grade 2, 0/3 nodes Surgery 3/6/2020 Surgery 4/28/2020 Mastectomy: Right; Reconstruction (right): Tissue expander placement Hormonal Therapy 5/10/2020
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Dec 15, 2020 04:19PM Mememee wrote:

zanie, I thought it was hard to be diagnosed with a new primary, in the same location 2 years after my bilateral mastectomy and reconstruction (DIEP flap), but 20 years! Wow that’s difficult.

You are the only person I have found on the board that has had issues with allergic reactions from breast surgery. My surgeons struggled to keep my rash and systemic reactions under control. I still have issues today. Next month I go for surgery for my new primary tumor that is behind my flap on the chest wall.

Dx 10/17/2017, IDC, Right, 6cm+, Stage IA, Grade 3, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 2/7/2018 Mastectomy: Left, Right Surgery 5/24/2018 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 12/7/2020, IDC: Papillary, Right, 2cm, Stage IIIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 2/9/2021 Lumpectomy Radiation Therapy 4/21/2021 Whole-breast: Breast, Lymph nodes, Chest wall

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