Recurrence after bilat mastectomy?

Laura - That is totally unfair! After all you went through and now this. I am so very sorry. I know they talk about a 1-3% risk due to a few breast cancer cells remaining, but boy oh boy - it doesn't seem real. As you said, at least they caught it early. Best wishes and hugs!!! - Jean

Laura, I am so sorry you are going thru this again.  However, I must thank you for posting this.  you have validated my decisions and course of treatment.  My idiot BS initially told me DCIS, lump, rads - with no discussion or other options offered.  I was not comfortable with so little info so I had several conversations with the PA - God Bless her!  I then decided on the bi-lateral mx.  During the surgery IDC was discovered hidden under the DCIS and I had 2 positive nodes.  Tomorrow I have my 5th out of 6 chemo tx's.  I have considered chemo my "insurance policy" and your experience validates that.  I will have 1 year of Herceptin and 5 years of tamoxifene in addition to the chemo.

Good luck to you.  This is a great place for info and support.

Lisa

Wow Laura...that s a mind bender for sure!  Had you done reconstruction too???  I m so thnkful you found it too...Yes, these boards have been a true God-send and I have avoided many mistakes becuz of the angels on here...ex: I found out about the test for metabolization of tamoxifen and had it done~~it s very rare (only 6%of women do not metabolize) and I just happend to be one!  My onc. had never suggested it ...she also "forgot" that prozac doesnt work with tamox...I learned that one too from the gals on the boards.  BTW I also got my NEW onc. referral from someone on here~~I love him and he makes me feel confident~~so important becuz he and I are partners for life!!

I say a prayer for good results on your tests~~be sure to let us know what happens becuz we really do care....

Love Jules

Laura, thank God you found it early!

I was not aware of a metabolism issue with tamoxifen.  What is the test????

Esteep, just looked your dx.  Grade 3  and tumor size may be why your rad doc is suggesting the rads.  Who knows.  Another examply of why we have to be proactive in our care.

Lisa

Lots of 1% 'rs here.  I had a bilat skin sparing mast in April 05 for stage 2, big tumor, no nodes, so no radiation.I had 8 rounds of chemo. In June of 08 after many surgeries on the left breast due to healing problems I had all the remaining tissue removed during a tram flap on that side.  They found some dcis and a small amount of idc.  Evidently the remaining cells were dcis at the time so they did not respond to chemo.  But I had some high grade cells too and those evolved into idc.  My Onc says I owe my guardian angel a big Thank You.  Fortunately the margins we wide and the nodes that were scooped out with the rest of the tissue were negative so no further tx was recommend.  Quite a surprise though.   

Ok ladies - You have me convinced that there is still a real risk out there. What kind of monitoring did your MD's suggest for post-bilateral mastectomy? And how frequently? Thanks. - Jean

I had a lump( a few months) on my scar line after my mx, had it removed and it was only fat necrosis.  I had my mx a little over a year ago. I have another small lump, but it looks like a stitch mark from what I can make out.  I've had it a few months, I'm seeing doc next week, and will show her.  I hope I don't have to do another biopsy. She told me they always have to be done surgically because of the implants. By the way, I had lat flap and implant on cancer side, just implant on non cancer side. lat flap side looks better.  My only follow ups are with b. surgeon. I found an outside onc to follow me once a year. The onc. I had at msk sent me off, I had no chemo, or rads with this cancer, and no tam., as it doesn't work on me. This was my second cancer, I got my first one after being on tam. for a year, so they feel it's not right for me.

Hi.  I too had a double mastectomy, reconstruction followed by chemotherapy and tamaxofen.  Two years later mine came back in a lymph node. I was feeling a lump in my armpit an no one thought it was anything but it was a cancerous lymph node (mine was in 1 out of 20 the first time)> It was frustrating becasue I too thought I did the most aggressive things but sometimes cancer is more aggressive than anything we do.  This time around I removed the node and whatever nodes that were left (about 5) and had radiation of the whole area, had my ovaries removed and now am on femera.  Frustrating being 39, working with three little ones but doing the best I can. I feel good...exercise and do what my doctors tell me to do! It does seem like there are a lot of us in the less than 1% group!  Be well-healthteach

right back at ya on the prayers...Let me know your next course of action, may be I can help. 

Kathy - Wow. I was also told no need for MRI or mammo's after the bilateral as well. I am SO SORRY about what you are going through now. I don't have the answers for you, but I will be checking in w/ my oncologist next fall to discuss follow-up. I am sending you cyber hugs. Please keep us posted on how things go! Take care. - Jean

Laura and Jean

Thanks for your replies, hugs and prayers. My first diagnosis was stage 1, but after surgery the drs. were so positive, and not having to go thru any treatment, I was convinced it was over. I will go see the onc. and a multi-specialist team next week. Surgeon seems to think I will need some type of drug therapy and radiation but we'll wait and see. I do know this time, I won't "close the book" and act like the cancer chapter of my life is over and done with. My thoughts and prayers are with you both - Laura, let me know what the rad dr. had to say. Kathy

I have my 6th and final tx in the morning.  Thanks so much for this thread, because I have some serious questions for my onc on what my post bilateral mast/post chemo followup should be.

Good luck to you all.

Lisa

Hi Ladies,

I have been reading this thread a few days, and first I want to say my heart and prayers are with those of you who have had a recurrance - SUCKS!!!!!  I have bee reading and trying to find something up to date on this very same subject, I try to live without thinking of BC everyday (how hard is that) I just came across this article that is not to awful old.

Sorry Ladies - the link won't work that I had posted so I copied the post.

Locoregional recurrence of breast cancer occurs in 5% to 40% of patients whose primary disease was initially managed by mastectomy, and up to one third of these patients will have concomitant distant organ metastases.^[1-3] Features such as prolonged disease-free interval, limited size of chest wall relapse, and local disease only (without regional nodal involvement) have all been correlated with relatively better outcomes in these cases. Patients with chest wall failure face ulceration, bleeding, unsightliness, and frequently malodorous disease. This patient fortunately appears to be asymptomatic at present, but her surgeon raises valid questions regarding the benefits of surgery to obtain durable local control and to potentially contribute to survival.

An important first step will be to document and confirm the presence of distant organ metastatic disease as suggested by this patient's PET study. PET scans have been associated with false-positive results in excess of 10%.^[4] An aggressive approach with multimodality management of the chest wall recurrence would be strongly encouraged if the patient is found to have isolated locoregional failure. Chagpar and colleagues from the University of Texas MD Anderson Cancer Center documented significantly improved outcome for patients with isolated locoregional recurrence if they were managed with surgical resection vs no surgery (median survival 65 months vs 17 months; P = .002). Survival was also better with multimodality vs single modality therapy (median survival 48 months vs 12 months; P < .001).

If distant organ metastasis is documented in this patient, then the question of how to manage an asymptomatic chest wall lesion becomes less compelling, but remains a valid question. Systemic therapy for breast cancer has advanced dramatically over the last several decades, and this is evident in the improved (by twofold to threefold) survival rates that have been reported for patients with stage IV disease over the past 2 decades by Giordano and colleagues^[5] and by Andre and colleagues.^[6] These improved results have motivated several groups to study the effects of primary breast surgery with curative intent for patients with known metastatic disease.^[7-9] Results from these analyses suggest that surgery (if it can be performed with negative margins) is indeed beneficial in physically fit patients, especially if they have limited and/or osseous-only metastatic disease. However, these studies are not necessarily generalizable because of their retrospective and highly selective, biased nature. For the most part, only patients who are good candidates would even be referred to a surgeon for resection of their breast disease in the face of known metastasis. Nonetheless, it is reasonable to ask whether we can extrapolate any information from these results and consider surgical resection of a chest wall recurrence in a patient with distant organ metastatic disease.

A reasonable approach for this patient would be to proceed with systemic therapy as a means of rapidly assessing the likelihood that her disease is controllable. The chest wall recurrence will serve as a very useful in vivo site for monitoring responsiveness to treatment, which could be endocrine, chemotherapy, or targeted therapy, depending on the primary tumor features. If her disease responds to systemic therapy, then this would favor proceeding with an aggressive approach and resection of the chest wall lesion, followed by chest wall irradiation to consolidate her local therapy. If, on the other hand, she does not respond to the initial systemic therapy selected (or if her disease progresses), then crossover to an alternative regimen could be attempted. If the chest wall and distant organ disease continue to progress, then surgery would only be useful if the chest wall lesion becomes symptomatic.

Hi Everyone,

I just joined this board today and have found your posts most informative.  I had a double mast. 15 1/2 years ago.  Very small IDC with DCIS in other areas of one breast.  Opted for double because there was hyperplasia in other breast already and I wanted to make sure nothing developed there.  14 nodes were removed and all were negative.  I had immediate expanders at the time of original surgery and then saline implants later.  Treatment was tamoxifen for 3 1/2 years, until I developed uterine cancer and had a total hysterectomy (due to tamox?).  No other treatment since then.  In January, my gyn found a lump above the breast that had the ca.  It was 1.6 cm and was IBC.  I had blood work, bone scan, chest x-ray and Pet/ct scan---all negative for mets.  I had surgery to remove the tumor and associated tissue.  No lymph nodes were found (they were all taken out the first time) but there was additional breast tissue found with DCIS.  There was no breast tissue found with the tumor itself.  I had oncotype testing done--overall score was 17.5 rounded up to 18, ER+,PR- and Her2-.  Treatment will be 6 weeks of rad and then Arimidex for at least 5 years.  I think I am still in a state of disbelief, as I had stopped worrying about more breast cancer after the 10 year mark!  By the way, Lisa, I am a dressage rider and rode one week after surgery.  Let's chat more about horses maybe just between the two of us so we don't bore everyone else!

Dressagerider66---Ingrid