Cancer in scar after double mastectomy; what now?

Hi Aetna, welcome and sorry you find yourself here. This is a great place for information, support or to vent.

I just had a recurrence but was found under my lumpectomy scar. I went in complaining of a new internal lump/ thickening which seemed new. I had 8 mammograms, ultrasound and unscheduled biopsy. Appointments were scheduled over the next 3 weeks including pelvis/hip x Rays (I had severe pain in hip as well) CT of pelvis, abdomen, chest. Bone scan whole body and MRI of both breasts and brain MRI. Apparently this is a metastatic work up at my hospital. I'm in a Canada as well. Another week and I got the news that it was back. No choice but mastectomy and I was a good candidate for immediate diep. 43 days later and I've started chemo. I realize my circumstance is different but it may give you a timeline of what I went through.

I would tell your Dr. How anxious your feeling and that you would like to see things moving quickly, but you know that things in our country sometimes takes a bit of time to co ordinate. I hope this helps a bit, just wanted to reach outside to you, I know how nerve wrecking this is. {{{hugs}}}

Shar

Hi Etna, We too are sorry you have landed here. Indeed, as Shar mentions, it can depend on country, and even city/town/village how swiftly things will proceed. We hope for you to have quick answers, and treatments to get you quickly past this.

We are glad you found our community.

The Mods

Hi Etna! I too had high grade DCIS in 2011. Had a mastectomy on the right side with a skin and nipple sparing mastectomy w/implants following in 2012. In Feb 2015 I felt a large marble sized growth, thought it was a piece of the implant so called my PS. I was pretty naïve and just didn't think it could happen. The PS scheduled to take it out and biopsy but in the meantime I got worried since he wasn't sure what it was. Called my BS who got me in right away. She is normally very optimistic but this time said she didn't like the looks of it and took some cells right in her office. Got the call a few days later that it was cancer. Had it removed on 2/23 and started chemo on 3/17. Prior to chemo she had me get a bilateral mri. The other side hasn't changed so nothing to do there. The pathology report showed all 3's which I guess isn't good, triple positive but mostly HER 2. I'm getting Taxatere, Carboplatin, Perjeta and Herceptin every three wks for six rounds. Half way mark is this Tues. I can empathize with you though. It was so hard to believe I was one of the less than 1% with a recurrence after mastectomy. I just feel fortunate I found it when I did. I wouldn't have started treatment for at least another six months had I waited for my yearly exam. Hopefully yours was caught very early. Sounds like it since you had DCIS in 2013. Keep me posted and feel free to PM me if you need some extra support.

HI Etna, it seems likely that they'll do some form of imaging to rule out mets.  Not sure what that would be in Canada.  In Boston it would be a PET/CT, but could simply be a CT and a bone scan. 

They'll take it out and likely offer chemo or at least hormonal therapy.

So sorry this happened, but welcome to the site.

Jean, I am so sorry. I know how rough radiation was on you and I am truly sorry. 

what is YMMV? I also was in the very low % expected to have recurrence...oh well I guess some of us need to add to the statistics

Etna, I also had a recurrence after BMX. I had a small, node negative low oncotype tumor and also had chemo due to my age. Recurred 18 months later. I had surgical excision, am doign chemo and will do rads. Do you have a plan yet?

Jamie so sorry and certainly I know how you feel. You get through it like you did the first time. Put one foot in front of the other and just do it because you have to. it sucks to be in this situation when you thought you were done. I was mad I was scared I was depressed That was two years ago and you will get through

Thanks TwoHobbies for responding so quickly. You summed it up well -- Scared and angry and depressed. Maybe things will seem better after the shock wears off. But I feel pretty awful right now.

I am also scared of chemo. I didn't have chemo the first time around due to my low oncotype score and tumor size. But, I am pretty sure that I will have to do chemo this time. I am seeing my MO tomorrow morning and hoping to have a treatment plan soon.

Thanks again for your help.

I'm so sorry you are going through this. It's also making me wonder or more question my own situation. I had IDC but my when my tumour was removed they found DCIS on one side. My BS and MO said the margin wasn't oriented and they presumed that it was the side touching my tumour and they couldn't go any deeper as it was on my chest wall. My RO disagreed and my case was discussed and they decided no further surgery was needed. Now in hindsight I'm questioning it all as I was built up to believe that oh glorious...I had the good kind of BC, early stage, low grade and low oncotype but I now know there is no "good" kind. I bloody hate what this BC does to ours bodies but also what it does to our minds is just as bad

Thanks for your support. I am sorry that we all have to do this again. I started to look at the recent boards -- a great resource for advice, support and impressive women. It made me feel that I can do this.

I am scheduled for surgery on Tuesday in an attempt to get clean margins. My MO told me that I will do 4 rounds of TC, potentially followed by radiation. Right now it looks like I will be starting chemo in early August. But, I am also going to Johns Hopkins in two weeks for a second opinion. I really like my MO, but I think at this point I want to see what treatments others would recommend.

KBeee -- After reading your post I started to look up journal articles on loss of PR (instead of paying attention to work). My MO told me that it shouldn't affect outcomes, but it does look like there are some articles that suggest otherwise. Let's hope that chemo does the trick. I am also glad to hear that you have been feeling well and able to keep up with your kids. My daughter is about to enter middle school, and I plan to be there for her.

TwoHobbies -- I, too, was hoping that I could avoid chemo, and just switch from Tamoxifen to an AI (with ovarian suppression). But, this time around the cancer is more aggressive. I will definitely look for the August chemo group.

JJOntario -- This experience has made me realize that there are no clear answers, just best guesses. My oncotype was 16 and I had clear margins. It just doesn't make sense. Don't drive yourself crazy, just be vigilant. On second thought, can you seek a second opinion?

Thanks again, Ladies!

Etna, I'm sorry to hear of your difficulties. I had a mastectomy for DCIS in 2000. My BF found a lump under my scar in 2009. On biopsy, it turned out to be some of my original tumor cells, now turned invasive and growing into my chest wall.

They did scans on me to detect distant mets, which they did not find. That made me stage III and not stage IV. My surgeon removed my lump and some surrounding muscle tissue, going down to the bone in one spot. He also took out 10 of my axillary nodes, of which two were positive. After surgery, I had two kinds of chemo, then radiation.

My treatment took about a year. It pushed me into menopause at age 42. The node removal and radiation made my lymphedema worse. But I'm still here, NED, five years after my second dx. I wish you clean scans, a skilled surgeon, and not too bad side effects.

I'm glad to have found this board. I just now felt a lump in my breast that had a mastectomy. I know in my gut, it is not good. It is exactly in the same place where the original cancer was found. My surgery was 1 1/2 years ago, with reconstruction surgery 10 months ago, so the likelihood of fat necrosis is pretty nil. I too, had a low grade tumor, with a low oncotype of 7. I will be calling the Dr. tomorrow. I think you just know when it's bad, I had this same feeling on my original diagnosis.

I have a question, how do they remove the cancer this time around. How much do they remove? Is it similar to the original mastectomy? Will my breast implant be removed? I avoided chemo the first time around, I don't think I will be as lucky this time.

Me too Debiann. Call into the BS now for an appointment. The waiting is the worse.