Recurrence after bilat mastectomy?

Hello, I can't speak personally but my breast surgeon told me this has happened and he has removed the node and it was negative. I recall having the conversation with him. Your primary was small...I would guess unlikely, but get removed for sure. Please report the outcome ... Prayers coming your way! Good luck:)

Bi lateral Mastectomy With Lymph node involvement. Had seven removed and three were cancerous. Did chemo...only four out of eight recommended no rad no tamaxifen...back again under arm pit and chest same side...they say it's same cancer...going for Oncologist recommended treatment Thursday...couldn't due radiation because of Lupus...Thanks for sharing!

Hi Everyone,

I am new here and I have read every single post on this thread. You all amaze me and inspire me. Even though I don't know anyone on here, I am truly happy for those who have received good news, and I feel sad and scared for those going through uncertain and difficult times.

I was diagnosed the day after Thanksgiving in 2012, at 45, with DCIS in the left breast after biopsy. Because of the DCIS, I was advised to do another biopsy in a different area of the same breast and another one on the right breast, which was thought to probably be benign. I elected to have a bilateral mastectomy to reduce my risk of recurrence. The pathology came back with a wide area of DCIS and a 3mm invasive tumor on the left side, and pre-cancer on the right side. After consulting with five or six oncologists, due to contradictory recommendations on treatment, I am now on Tamoxifen. None of the oncologists recommended chemo, radiation, or herceptin even though I was Her2+. My oncologist told me that I was strongly ER+/PR+, and that was probably the driving force for the tumor growth.

I have been trying to find a recurrence rate number for cases like mine, but I have not been able to from my research on the internet. Some of the oncologists I spoke with gave me single digit numbers and said the Tamoxifen would reduce it by 1/3 to 1/2. But I have learned that, after reading this thread, nothing is certain. It's hard to count on numbers.

I have not been able to stop reading about recurrences and how this factor or that factor significantly increases the risks, and I have some of those factors. It's scaring me to death, but I can't stop reading. I am scared of the future. I am scared of the uncertainty, I am scared that I would be in the group of statistics with the bad outcome. I know I have to look at the positive and live in the positive, not vice versa. I am trying, but it's hard. Thank you for listening.

I see kindness, the sharing of happiness, sadness, information, and spirit, and I see strong women on this board, and I take comfort in that you all know and understand how I feel. I have learned a lot from reading here, and I have been inspired by how strong you all are. I will pray for everyone that test results will be good, that the side effects of treatment are not so bad, that no one will have to face the paralyzing fear of "what is that I feel", that no one loses someone to cancer, andthat you all will sleep with some comfort and peace each night.  

Goodnight and sweet dreams.

Thanks barbe. I do have IDC, though a small one (3mm). The Tamoxifen I think is mainly for the invasive tumor. I know I am doing everything I can to minimize the risks...reading about recurrences just freaks me out. Maybe I just need to stop reading, not bury me head in the sand, but just stop doing research for a while.

I hope you are doing well.

Scary to go through again!  I feel for you~I don't know what I would do either.  I have not had a recurrence.  Keep us posted!

hang in there

namaste-i have to say that after going through chemo twice, eight years apart, i would probably go the route you did. I didn't have a choice, had to do chemo again as mine had progressed too far not to do it. It is taking me much longer to recover this time. It is so hard to decide which way to go sometimes, and is best to look at all options and decide what is best for you. Did you get a second opinion? That might make you more comfortable with your decision.

Mum, SO sorry to hear of your angst!! Until you have a lump in a jar, please use your energy for gardening or golf instead of worry. You will have enough of that if it comes back positive! I know it's easy to say, and we ALL know the waiting is the worst...but why are they taking so long to biopsy? Are they not concerned? Why didn't they biopsy during the ultrasound? I don't get it.....

Wow Mum, your post is almost a blessing to me. I had DCIS 4 years ago and had a bilateral mx with diep reconstruction, unfortunately my left flaps didn't take so i have an implant, one of those wacky cases. No invasion or further treatment including no tamoxifen. Well on Thursday I had a routine breast MRI and got a call from my BS yesterday saying "everything looks good But there is something I want to discuss so call me". Don't you love those calls?! The report says "there are new left internal mammary chain lymphnadopathy present with multiple new enlarged internal mammary chain lymph nodes with the largest being located surperiorly measuring 6 mm short axis. Impressions: new left internal mammary chain lymphnadopathy. Differential diagnosis would include metastatic disease and an infectious or inflammatory process".

I have no breasts! What could this be? Oh and no I have not been sick or on antibiotics.

I'm meeting with my oncologist soon I hope and discuss his thoughts. My BS wants to repeat MRI in 4 months. My original site was located near the chest wall but not invasive. I'm not worried just want to be prepared you know?



Thanks and for what it's worth.... I do not regret my bilateral mx one second! Good luck!



Kim

Exactly my thoughts....but as I'm told over and over again..."you had DCIS and no invasion " so I'm not a priority in their world of Stage 1-4. My GP is pushing me to let my oncologist take the lead and get his thoughts and recommendations. I still produce estrogen and have cycles so since I'm not on tamoxifen I worry. Plus my dad's prostate cancer came back after 15 years and he has NO prostate...1 cell was all it took. So that's why I'm the CEO of my body! Thanks.

Hi Kam....glad you asked. I was the one pushing for it given my "just DCIS" was located close to the chest wall and my BS said she had no problem ordering it b/c "you can't get all the breast tissue" but mine was not invasive so no reason to be concerned. My father found his return of prostate cancer after 15 years from an MRI he had to find out why his leg/back was hurting him. They found a lesion on his spine so immediately tested his PSA and it was 4.5....he has no prostate but one cell hung out and was fueled by testosterone so here he is. My estrogen levels are still normal at 44 and since my DCIS was 95% estrogen positive I will be vigilant. Glad I am b/c now I might have something else to battle. Oh and my best friend died last November from BC...her 3rd time but she drank the kool-aid her doctors gave her with not wanting to know or be in charge. Doctors are great but not God so I'm going to push until I'm happy. :-)

Hope that helps....ask away. :-)

Wow! Now I see why I refuse any PA on my BC case...I want the dr who I'm working with and knows me. My new MO not only did an exam at my first consult/meeting he ordered blood tests to check everything, including the CA 27.29. That isn't reliable but at least he heard me and did something instead of the usual patting on the head. If you're not happy with your docs then find another one...its your body and health! Proactive never hurts right?

Hi Kim,

You sound very empowered & I hope that you get the best possible news. I just had a BMX for DCIS & am still evolving a strategy, but it is good to see others who have taken a very hands-on approach.

Take care,

Deb

Thanks Deb...I decided if I had to go through "just DCIS" then I'd be an advocate for ourselves in taking charge of our health. I know that there is a reason for all of our journeys so why not turn limes into margaritas?! Ha!



MinusTwo - thank you for being honest!! Finally someone who is real....I so appreciate it! I'm sorry you're having to go through this again....may I ask what it was you felt suspicious or where? Was your recurrence considered that or a new primary area since you originally had DCIS? Don't you get tired of hearing that just b/c you had DCIS there's nothing to worry about?! I can handle whatever comes my way I just prefer to be prepared for battle...and you wonderful ladies are part of that prep!

lsugirl, why do you think only MinusTwo was "being honest" and is "real"!! I was totally honest in my post and I can tell you that I am definitely "real".....  I think you might have meant to say that you finally heard from someone who thinks the same way you do, or had the story that you needed to hear. It's easy to offend people on threads that are sensitive topics. I see that you have been around for quite a while, but not posted much. I hope your story turns out to be "false" in a good way!!

And, I did NOT have DCIS, but I do HATE when I hear the term "just" DCIS. Sorry, but it's CANCER, too!!! I've been on this board long enough to have seen ladies with DCIS go on to pass away. Cancer is cancer. The cancer doesn't know the "rules". I feel bad when I see that someone with DCIS has been degraded by being told they "just" have DCIS. I see more double mastectomies with DCIS ladies than with any other type of breast cancer.

I am another one who had "just DCIS" (and I really do not like when Doctors use that term with that voice!). This time around I found mine when I felt a lump under my arm. After 12 years both my GYN and the surgeon did not think it would be cancer. Both thought it was either scar tissue or a cyst and were surprised when the pathology came back as a cancerous LN with extranodal extension. Even though I had a BMX and SNB unfortunately there was still some DCIS in some remaining breast tissue under my arm. Back then there was no recommendation for either chemo or rads. I fell into that 1-2% category that get a recurrence. It took 12 years for it to break out of the ducts and evolve into IDC. So now after chemo and ALND surgery I am once again NED and hope to stay that way for a long time But as Barbe said "cancer is cancer and doesn't know the rules"