Can BC come back after mastectomy?

AMO4

I just found a new lump in my right breast which I've had cancer in twice. I've had a mastectomy and reconstruction two years ago. Could this be cancer again? Has anyone out there had this happen?

MelissaDallas

Hi AMO4,

Here's a thread link

https://community.breastcancer.org/forum/88/topics...

dancingdiva

hey AM04,

It's happening to me right now. Had it on the left side, had a BMX, and now it's on the right.

D

AMO4

Just had a biopsy on the lump yesterday, will know Tuesday what it is...

AMO4

KBeee

I have had a local recurrence after BMX. Hoping yours is benign. Keep us posted.

kbram

I also had a local recurrence after a BMX!  It does happen.  Hope yours is benign.

Kathy

AMO4

I just found out its a recurrence... I will see my doctor Tuesday about what is next for me. What did they do for treatment for you all?

Kechla

I'm so sorry AMO4! I am in the middle of this as well with a very similar situation. I had DCIS (1.5cm) (ER+) 8 years ago and had a BMX with reconstruction (saline). 2 months ago, I also found a lump (1cm). Originally it was diagnosed as DCIS again, but after my RO and MO couldn't agree on treatment (whether I should have radiation), I had a second opinion from Mayo. Turns out they changed my diagnosis to IDC Stage 1 (Grade 1, ER+). I had a lumpectomy after the DCIS that did not get good margins and then a re-excision that got mostly good margins (but found 3 more focal points (all DCIS)) and 1 margin less than 1mm but still clear. Lymph node evaluation has been the tough part for me. Since my lymph pathways were pretty much destroyed by the BMX, they did not do sentinel nodes during my lumpectomy or re-excision. Given the small size and low grade of my new tumor, they do not want to do a axillary dissection. We did do an ultrasound and found no suspicious nodes. MO said that given the size and grade of my tumor lymph node involvement is likely less than 1% chance at this point.

So... Radiation is now a given and they are extending it to cover the lymph nodes just in case. Also, 5+ years of tamoxifen (if I can tolerate it - I have uterine issues already...) The radiation will likely cause capsular contracture. If it is excessive they will need to remove the implant and start over. PS thinks he would still be able to fix the damage and put in another. Depending on my skin condition, I may need a skin replacement though. Not sure what I will do if that occurs. Maybe just take it out and be done. I will leave that decision for a later time...

The good thing in all this is that I caught it early largely in part to the implants. The lump was very easy to feel while it was still small.

I knew that there was always a chance for recurrence, but after 8 years, I thought I was in the clear. It just sucks!

I hope you got some more answers this week. Let me know how things go. I will be thinking of you.

akshelley

Yes, unfortunately recurrences happen after one or bilateral mastectomy. I am living proof. I had Stage 1 in 2009 and treated it with BMX. I had no need for chemo, radiation or tamoxifen as it was not in my lymph nodes. Unfortunately, a surgeon can't see if they have left breast tissue cells behind on the chest wall. Cancer happens on the micro cellular level. I think the problem is the doctors want to make you "alright again" and quickly, when you have an early stage cancer. They sell you a bill of goods that the recurrence rate is much lower (& it is) after BMX, but no one stops to think they may be in the unfavorable odds of recurrence.

So off come the girls, with as much tissue as possible. And on goes the expanders, and later the implant is tucked under the pectoral muscle. And you are "restored". But you can't be certain they ever got all the breast cells. For me, they did not. I was diagnosed with Stage 4 four years later. I was in the percent of unfavorable odds.

In my case, there was nothing anyone could've done to change how my journey has developed. So, I accept it as "bad odds" and move on to focus on the treatment available and the quality of life I want to have. There are so many resources and treatment options, that we have reason to remain hopeful.

JudyKRN

I had a bilateral mastectomy with reconstruction, 11 years ago. It was only Stage1 but I had 3 tumors in the right breast and one tumor was found in the left breast after chemo. I was just diagnosed, in April, with Stage 4 with metastases to the bone. it's the same breast cancer as the original with the addition of HER 2+. It recurred in the left axilla. I honestly thought I would not have a recurrence with Stage1 and chemo plus the mastectomy…..

JudyKRN

AMO4, I am taking Letrozole and Ibrance. These oral meds have been found to shrink the tumor for about 20+ months. Around that time, as my oncologist explained, the cancer becomes "aware" and the oral meds are no longer effective. He said then I will have to go on chemo for the rest of my life…..

AMO4

so, I went back Thursday to see my "team" of doctors and they said they retested the lump and it came back clear! So they rechecked it again and again no cancer!?! They are sending it to Mayo to make sure, but it appears I had a false diagnosis! I'm thrilled it came back negative but I wish I could get the past week of my life back. What an awful experience! I'm so sorry to hear your stories. I will keep you in my thoughts and prayers. Please keep me posted on how you're doing.

jmb5

AMO4, so happy for you that there is no cancer, but what a horrible ordeal. How on earth did that mistake happen? I am trying not to panic right now. I found a pea sized lump on the edge of my breast, near my armpit. My breast surgeon scheduled an ultrasound for Wednesday. I had DCIS in the same breast in 2009, then again in 2013. BMX with DIEP reconstruction was Jaunary/2014. Sentinel nodes were clear, but they did find Paget's in the nipple of my right breast. I thought it might be fat necrosis but reading of all these women who have gotten cancer again after a BMX is scary. Does anyone know if it makes a difference where the lump is found? Mine is right on the edge of the reconstructed breast (flap) near my armpit.

KBeee

AM04, Great news! Hoping Mayo confirms it! What did they say it is?

jmb5, it is most common at the site of the original cancer, but it can be anywhere. Hoping yours is benign.

Kechla

AMO4 - fingers crossed for you!

AMO4

KBeee, they said they think it is just scar tissue. At first they said it was triple negative, then they sent it to another patholigist who could not find the cancer, now it's at Mayo and I'm waiting for the results. Weird huh?

AMO4

thanks Kechla!

ChiSandy

Makes sense that if benign tissue is misdiagnosed as malignant, it’d be triple-negative: of course scar tissue lacks hormone receptors and can’t possibly overexpress HER2. Scary, though--can you imagine if you’d started chemo, experienced the SEs, and found out it wasn’t even indicated? After reading your story, if I ever get a TN dx, I would have the tissue re-examined more than once--and by more than one lab.

Mommyathome

ladies this whole discussion of a recurrence after a bmx for DCIS caught my attention. I was diagnosed in 2013 with DCIS and opted for bmx. My doctor constantly says I'm paranoid about a recurrence. She says I'm 100 percent cured, can't get recurrence since my cancer was DCIS and we took radical measures by having bmx. I've had fat grafting which left me with fat necrosis... Feels like lumps. When I ask her to check them she tells me I need to relax.

Have any of you had DCIS and bmx and then had recurrence?!

Kechla

Hi Mommyathome,

Yes, I did have a recurrence after BMX (for DCIS). It can happen. It is nearly impossible to get every breast cancer cell out. My doctor told me before my surgery that my risk was under 2% which was way better than even the general population. Most people who make this choice will NOT get a recurrence. Yes, you see it on here, but this is probably not representative of the whole... How many people come back on here 8 years later because they didn't have any issues... People come here to get support/answers/ideas when they are having issues. So, it likely just seems like a lot more than 2% are having issues/recurrence.

To give you some background, I was diagnosed with ER+ 1.5cm DCIS high grade with comedo necrosis at 37 years old. I chose a skin (not nipple) sparing BMX b/c I was 37, had small kids, my mom had BC at 46, and "for ME" radiation and tamoxifen seemed more extreme of a treatment (with more side effects/complications) and more chance of recurrence. One thing that was unique was that during my biopsy, I bled a LOT. Then I got a massive hematoma that burst out my biopsy incision. It is directly under that incision that I had my recurrence. During my BMX, my doctor had to take more tissue to get a good margin (they were testing margins during the surgery). He said that traces of the DCIS were found along the biopsy path. In my unprofessional opinion, all the bleeding/hematoma likely seeded the area. Why my surgeon did not cut out the biopsy scar is a question I still have... So, that is to say, my biopsy/surgery was not uneventful. And perhaps why I am the 2%. I did also have saline implants (expanders put in during BMX). I did not have fat grafting. I found my lump 8 years later. I think having the implants helped me to find the lump I had very early. It pushed the lump right up against my skin. Most of my recurrence was DCIS (same pathology as the original) (and actually multi-focal this time), but the main tumor also had some low grade IDC in it.

All that said, your doctor is most likely right. But, I don't think it would be unreasonable to ask for an ultrasound for your peace of mind. Or you could choose to monitor your lumps yourself. Be aware of them and if they change take action.

I hesitate to post, because my situation is not common and I don't want to scare others. I have never regretted my decision. I made the best decision I could with the information that was available to me. Even with more information, I would still make the same decision (but I'd ask the surgeon to get rid of the darned biopsy scar...)

Not sure if any of this eases your mind. DCIS is tricky. There are so many variables to it and medicine tries to lump us all together. Just be diligent to pay attention to your body. BTW, it bothers me more than just a little bit that a doctor would call someone who has had DCIS previously "paranoid". Is this your surgeon, plastic surgeon, gynecologist, or an oncologist?

Best of luck to you. Take care!

Mommyathome

kechla,

My DCIS was found by mammogram. It appeared as microcalcifications. We did biopsy that showed adh and a lumpectomy that showed DCIS. My lumpectomy margins weren't clean do my choices were another lumpectomy and radiation or mastectomy or bmx. I chose bmx. My mom and aunt had bc and my grandmother and great aunt had ovarian. I wasn't taking any chances!!!

When I got the pathology back it showed not only DCIS and adh in left breast but also adh DCIS and Lcis in right breast. I had my nipples removed as well. Then 6 month later had a total hystertomy.

The breast surgeon and plastic surgeon thought I was being paranoid. That really affected my recovery. I needed doctors I could ask questions and opinions and not think that because I'm asking questions I'm paranoid!!

I also did tissue expanded. The day grafting was done later because I had a concaved area on my chest that really bothered me both cosmetically and physically. I was pretty much down to the bone. So we tried dat grafting to fill it in. The appearance is better but now I have fat necrosis, lumps!! Just what I need being all paranoid and all lol!!!

Every three months I have the areas aspirated because they fill up with fluid and cause me pain. Last time I went in the Doctor aspirated 4 areas and gave me a lidocaine shot to ease some of the pain. People just don't know what we go through! I've had 11 surgeries/procedures on the past 21/2 years!!

My bs suggested I take all the fat grafting fat out and change implants. Not sure I'm ready to sign up for that!!

Kechla

mommyathome,

You've had quite a couple years. It seems very odd to me that your doctors are downplaying your concerns when you have such a strong family history.

Do you have the ability to see another team of doctors? Have you gone for any second opinions?

MinusTwo

MommyatHome - I too had DCIS, BMX and recurrence at IDC. Please do read through the thread that Melissa posted in the very first response to this question.