After 20 Years As a Survivor

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.

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!

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.

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 relentless..you can never let your guard down

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.

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.

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.

Hugs,

Nan

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.