Recurrence after bilat mastectomy?

Hi Bren58 - My surgeon thinks they are oily cysts from all the surgeries and they have benign characteristics according to last ultrasound. However they still want me back again in another 6 months for another ultrasound which concerns me? I would prefer to just have them removed or asperated especially the one that can be seen through my skin. If they appear the same in May then I plan to request removal. Anyone have oily cysts become benign or a wrong identification of an oily cyst that actually is bc?

Also those that have had reoccurrence after a mastectomy where was the lump located. How can you tell if there is a reoccurrence on the chest wall when you have implants?

Hi everyone- I've also had a recurrence after a BMX and am currently in treatment fighting it. I keep hearing how lucky I am my presentation is rare, since it's recurrent but still local, which isn't common after a BMX. In 2007 I was DX with ILC Stage II, ER+, PR+, HER2-. I had a BMX with reconstruction and 5 yrs Tamoxifen. I had an awful time with Tamoxifen, so only took it 3 ½ years. This past June I noticed the skin on my underarm was tender (on the original cancer side). A week later I felt a lump deep in that underarm. Within days I had a fine needle biopsy with extensive ultrasounds. DX was the same cancer as above, with one tiny tumor next to my left implant in a small amount of remaining breast tissue (7mm) plus 3 nodes in my underarm ranging from 8mm to 1.7cm and 3 sub clavicle nodes which were all about 7-8mm. My DX is formally Stage IV, but since it's locally recurrent, my prognosis is Stage III. I'm obviously not happy about it returning, but I am incredibly grateful it was considerate enough to find "local" areas to reappear. Treatment this time is obviously much more aggressive: 12 weekly doses of Taxol, 4 doses of FAC over 12 weeks, Level III Axillary Dissection and 33 rounds of radiation. They'll also "kill" my ovaries one way or another, whether by surgery or injections. In addition, the tiny tumor next to my implant means the surgeon will need to remove much of the pocket around my left implant, so they're going to have to remove my implants and replace them with expanders while I go through radiation (ugh expanders again! not as terrible this time, since they'll be able to expand them quite a bit in surgery, but STILL). After radiation, I'll have a reconstruction surgery to rebuild the left pocket and replace my 410 implants, hopefully returning everything to the look I have now, which I'm very happy with. I didn't want to have to go through even a "sort of" reconstruction again, BUT this also means the radiation will hit every single spot they want it to, so it's worth it knowing I'll come out of treatment knowing my doctors got to every single part of my body they could to kill this cancer once and for all. I have zero plans to ever have cancer again, so even knowing the radiologist couldn't reach 1% would haunt me!

2young- I totally agree about getting a needle biopsy, but I also think you have good reason to feel positive about things. It's my experience these doctors know exactly what they're looking at, and it would be crazy for them to insist something is benign if there was any doubt.

Hi all,

Just reading through some of the posts here as currently looking like I have a recurrence. I am almost 5 years since diagnosis (about 2 weeks off if you could believe it!) diagnosed Dec 2009 aged 29 with 2 separate lumps in left breast IDC grade 2 and multi focal DCIS in same breast (about 8 areas showed up in MRI). So opted for a BMX to rule out any cancer in the other breast. Had sentinel node biopsy, skin sparing mx with expanders. Had 11mm and 20mm lumps removed I micro in a sentinel and also sadly lymphovascular invasion. Cancer was 8/8 cancer positive. Had FEC 6 rounds chemo, rads and tamoxifen for 2.5 years. Couldn't hack the zoladex so didn't last too long in that!

Anyway all been going well, had expanders replaced couple of years ago. Over the last few months have noticed I have been exhausted (yes do have 5 children including twins last year!) but it was not a normal tiredness. Plus more recently slow heart rate, chest tightness and pains, pains in neck, left arm and really severe headaches at the very top if my head.

My breast has a big red rash on it and it was bigger and really hot to the touch. I had noticed a couple if red bruise type patches over the last few months but didn't think anything of it. You can also now see the breast is not as smooth as it was and looks a bit dimpled and pulling at the recon scar. The redness has calmed slightly as have finished. Course of antibiotics but other problems still remain. My breast feels really odd like something is pushing the implant forward or like something is tucked behind the implant. Under arm and collar bone area also throbs and hurts.

Been seen now at the marsden and had more bloods done ( ones last week showed very abnormal liver functions, raised clotting and inflammation levels raised?) just had call to say I now have to have a liver scan and bone scan so assume the bloods were not good again. Seeing consultant Thursday this week.

So looks like it may be happening again. For those that have had chemo and nodes out, do you struggle with finding veins in your 'good' arm?

thanks Bren. Nice cough now developed and taste metallic everytime I cough! It sounds strange but have already started to come to terms with what may be. Husband thinks I am mad but I think you just know as you know your own body. X

I had a new primary cancer appear locally on the other side four years after a double mastectomy and tram flap reconstruction. I got lucky, two times in a row it wasn't invasive. The drs can't believe it. I'm going through chemo again.

Mommyathome, I know you were asking about DCIS, but I had LCIS at first and have had four recurrences. This last one is 4.5 years after a bilateral mastectomy. The 4th and 5th recurrences were invasive. I found it sheerly by accident while in the shower. My then-MO had done an exam three weeks prior and had not found it. When they took it out the surgeon found two more tumors in there.

Mommy, I had DCIS in 2000, had a bmx with sentinel node taken out. I found a lump on the scar line under my arm 12 years later, which turned out to be either a local recurrence or a new primary ( docs still aren't sure) Not all breast tissue can ever be removed when they do a bmx, there is always a small portion that is left somewhere. In my case it was under the arm. My risk of recurrence in 2000 was 1-2%, so I along with others on this thread happen to be in that rare minority that had DCIS and a bmx that have to come back and deal with bc all over again.

I had a breast MRI at 18 months, then MO, BS & PS doing feel tests. Was told I'd never need another mammo since the breasts were gone. Even after recurrence & treatment, most docs don't want to do lots of scans. Mommy - you really do need to attempt to put it aside and move on. Note - I didn't say forget about it, but move it to the back burner. Breast cancer is one of those sneaky things that can come back anytime the rest of your life. I was mostly successful at putting it away by a year after the first round. This time will be harder, particularly since I now have truncal lymphadema to contend with every day, but my goal for January 1st is to start acting like "I can do anything" again. I sincerely hope all of us can move forward and minimize our fear.

MommyAtHome - I know. It's really hard to ignore things that worry us. This is a case of "do what I say not what I do". Or I'll let you know what I'm doing after the CAT scan I'm having Wednesday to find out more about a "prominence" in the apex of my right lung. Hope it's radiation fibrosis.

Hello All---diagnosed with breast cancer recurrence 9/4/2014. Backstory: normal mammo 1/2012; 1/30/2012---wake up to find a marble size mass at the 1 o'clock position left breast. IDC 1.7cm in size, 1 left axillary sentinel node with ITC (isolated tumor cells). Low grade/ER+/PR+/Her2-/oncotype=9/Ki 67 10-20%/ "possible lymphovascular invasion" (but a lot of path docs, MO's and surgeon felt it was due to core biopsy).

Feb 2012: bilat mastectomy with 1 sentinel node; tamoxifen advised but I declined

Sept 2014: 7mm left chest wall recurrence at 1o'clock position

9/25/2014: left chest wall excision with left axillary node dissection--all 8 nodes negative for cancer, small nest of tumor cells in chest wall

10/23/2014: left chest wall excision, path negative for cancer

Have been in a tailspin every since. After consulting many RO's and MO's (at minimum I need XRT to left chest wall + hormonal blockade, several MO's and RO's advised including supraclav fossa), 2 MO's offered me chemo on top of the XRT/hormonal blockade. FINALLY decided that this is my last chance for cure, I am going for the "NO REGRETS" option. AC + Taxol, XRT to left chest wall and SCF, followed by hormonal blockade. Age 42 when primary BC occurred, 2 yrs 7 mos later I am 45 and the cancer which is NOT behaving according to oncotype or Ki 67 (7mm excisional biopsy showed Ki 67<5%) and for something so "low grade" it is behaving hi grade. Science is not 100%. Treatment is individualized and at the end of the day, it's what each can live with. I know I'll be thinking mets/recurrence every moment every day if I don't do all of the above. Am scared out of my mind. Have not really slept since Sept 2014.

I don't think most people realize how barbaric and tough surgeries are for breast cancer! Texas, I totally agree with this and have thought this since my first surgery in 2000! We have some so far in medicine, but the treatments we have to endure do seem very barbaric. I hope one day that future bc sisters will not have to go through what we have.

Bren58- Amen! Chemotherapy and hormonal treatments are very, very tough, but those we have in common with a lot of cancers. Mastectomies and Axillary Dissections are unique to breast cancer and are brutal and disfiguring surgeries. We don't get near the props we deserve for going through them, which is why I get SO incensed every October (getting on soap box now). Don't get me wrong, I LOVE and APPRECIATE COMPLETELY when anyone wears pink or does things to try and support, but companies/corporations have completely taken OUR awful disease to use for their benefit and made it seem cute and less dangerous than other cancers. It's not cute. At all.

Mommyathome- DiveCat is completely correct. It seems bizarre, but that's what mets are: a recurrence of the same cancer in a different place. Having a recurrence in the local nodes or any remaining breast tissue is GREAT compared to true mets, because a local recurrence means your prognosis is similar to a first time occurrence (I hope that makes sense... let's just say while I'm not happy about having breast cancer again, I'm grateful BEYOND WORDS the cancer cells were considerate enough to find a tiny amount of remaining breast tissue and local nodes in which to grow instead of moving in anywhere else!).

adgirl5- My doctor told me the same thing about genetic mutations. I've now tested negative for every single one that's known as of 8/2014, but he says there's no question with our extensive family history there's "something." He showed me a pie chart one time and pointed to the sliver of unknowns and said, "That's where you fall. We'll figure it out someday." *SIGH*

MinusTwo- I'm so sorry about your recurrence and hope you're doing well with treatment. I should have been more clear when I said with a local recurrence "prognosis is similar to a first time occurrence." I meant it's almost as if your case is being diagnosed in someone without a history of breast cancer, not that it means your prognosis will be the same as the first time you had it. My doctor told me when breast cancer returns in a "non-local" area, diagnosis and prognosis are always Stage IV, regardless of size or number of tumors. Either way, it's mets, but there's a big difference clinically, so while I'm not happy about having to go through breast cancer again, I'm VERY grateful it's local.

My first dx ended up being stage 1b after surgery, and I'm 3c this time around, so I understand where you're coming from. I also just found out I'm basically going to have to do reconstruction again on top of everything else, 410s are coming out and expanders going in, so I'm SUPER happy about that.

Thanks MinusTwo. It's a bummer about the implants (I love my 410s!), but I have one little tumor stuck to the side of my left one, so my surgeon has to remove a huge part of the sac that holds the implant in place. Since I'm having radiation, and the right implant was actually going to be harder to work around than the left, they'll remove both and replace with those awesome expanders I'm sure you remember as well as I do. Thankfully, they do believe they'll be able to go ahead and expand them quite a bit. Fingers crossed I won't really need much expansion past that to return to my current look (I hope my skin behaves through radiation, or I may end up with 2 different looks too). The silver lining is now there's no question my radiation onc will be able to hit every single spot he wants.

Hubby keeps teasing this must be my chance to up the implant size! ha. Stinker.

I was at Baylor/Methodist in 2007 and am at MD Anderson now. I adore the doctors I had before, but I admit it's nice having everyone under one roof. This cancer business is inconvenient enough!