Topic: Recurrence after bilat mastectomy?

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Jan 17, 2009 02:17PM

Posted on: Jan 17, 2009 02:17PM

slmdavidson wrote:

I've just had a recurrence after a bilat mastectomy 15 months ago.  Just wondering if anyone else has had this??  I thought I was done with breast cancer after removing both breasts!  I did not have rads, chemo or tamoxifen last time.  Just had my "lumpectomy" and 5 LN taken out this week, and still waiting on the pathology report.  Looks like probably radiation this time and tamoxifen but not sure yet about chemo.  Will know more at my follow up appt this week.  I guess it was good I found it early - it was right there under the skin.  Seems like I read 1% recurrence rate after mastectomy but that seems high to me since I haven't read much about it.  Anyone else have this?  Thanks, Laura

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Feb 4, 2009 05:49PM Kathy59 wrote:

I just found out today that my cancer is back after almost 12 years. In 1997, I had a bilateral mastectamy and reconstruction and was told everything would be fine - no drugs, radiation or chemo, and no more mammograms. So I was shocked when right before christmas, I found a large lump in the same breast as the first occurrance. I went to my dr. and thank goodness I saw the PA who insisted I have a mammogram immediately and sent me back to my surgeon. The mammogram and follow-up ultrasound showed a highly susp. growth which I had removed last week (opted for total removal instead of biopsy). Got tests result yesterday and will see onc. on Monday and multi-specialist team after that. Right now I am feeling that I and my drs. before kind of dropped the ball. I was happy to believe that I had nothing to worry about anymore, I didn't keep current on new findings or developments - the nurse at my mammogram told me that they are now telling women to keep having their yearly mammograms after surgery. Bottom line, you are the best advocate you can have, keep up on current info, ask questions and always get a second opinion. Having said that, what tests should I have done? I had most of my lymph nodes removed during my first surgery so there were none to take this time. I've been told that I should have either a CT scan or petscan. Are their other tests I should ask for? From reading this forum, I think the recurrence rate is much higher than 1%. Thanks for reading this, listening and caring. 

Dx 2/2/2009, IDC, 3cm, Stage II, ER+
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Feb 5, 2009 06:07AM mykidsmom wrote:

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

Prophylactic Bilateral Mastectomy w/ Tissue Expanders - 12/08 Exchange 04/09 Dx 8/25/2008, LCIS, Stage 0
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Feb 5, 2009 06:17AM slmdavidson wrote:

Hi Kathy

Thank you so much for sharing.  I am SO sorry to hear about this.  It is so unbelieveable?  I also had the same treatment first time around....bilateral mx, no hormone therapy, no rads, no chemo, no mammograms or MRI's.  Mine came back quick, only 15 months later....my breast surgeon has only seen this one other time in all of his years so who knows how prevalent it really is???  I'm still in the midst of figuring out my treament plan this time around.  Just finished my surgery a week ago and see a rads doc tomorrow, Oncologist on Feb 20.  Please keep me posted on what you are going through. You can send me a private message if you want and maybe we can keep track of each other!!!  Sounds like we are on the same timeline.  Was your first diagnosis DCIS?

Hugs to you....praying for you Kathy!

Laura

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Feb 5, 2009 07:34AM Kathy59 wrote:

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

Dx 2/2/2009, IDC, 3cm, Stage II, ER+
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Feb 7, 2009 07:40AM slmdavidson wrote:

Hi Kathy

Had my first appointment with the Rads doc yesterday.  I'm set up to start rads in a few weeks.  Have my simulation and CT set up next Friday.  The plan is to start 5 1/2 week schedule starting no later than 2/23.  I have a 10 day trip planned early April that cancer is NOT going to take away from me so that gives me a one day buffer to get all those treatments in!  Whew!  That is cutting it close!  I've also been told hormone therapy for sure this time, so I'm guessing you'll be doing the same. I should have that answer by 2/20 when I see the med Onc.  Kathy - keep me posted on how you are doing and your treatment plan.  I'm thinking about you.

Laura

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Feb 8, 2009 05:48AM Lisa1964 wrote:

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

I attacked and I won! www.JohnnyRebelAcres.com Dx 8/28/2008, IDC, <1cm, Stage IIA, Grade 1, 2/17 nodes, ER+/PR+, HER2+
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Feb 8, 2009 08:32AM hollyann wrote:

I had bilat mast with tram recons ...no rad no chemo.....tamoxifen for 9 months, had ooph and hyster , took Femara for 3 months switched to Arimidex which I am currently on........Just had biopsy for what turned out to be a B9 lump.....Still waiting ofr bone scan results.....Oncotype score 11 ER/PR+  ...According to onc my recurrence risk is 9%......Did any of you do Oncotype DX testing?.....This will determine if chemo is right for you or will do no good at all or is on the border.......Hugs and love...Lucy

Hugs and Love....Lucy Dx 1-15-07 IDC stage 1b grade 1, 1.6 cm.....Also DCIS grade 3, both in left breast Dx 1/15/2007, IDC, 1cm, Stage IB, Grade 1, 0/6 nodes, ER+/PR+, HER2-
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Feb 8, 2009 11:18AM - edited Feb 8, 2009 11:22AM by 1Cathi

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 After Mastectomy

Posted 01/29/2008

Lisa A. Newman, MD, MPH
Author Information

Question
A postmenopausal woman has local recurrence to the skin/right chest muscle 10 years after mastectomy. Positron emission tomography (PET) scan now shows bone and other distant soft tissue metastases. The patient is currently asymptomatic from the ipsilateral local recurrence. Are there any data on overall survival improvement with surgical resection of these skin/chest wall metastases?

Response from Lisa A. Newman, MD, MPH
Associate Professor of Surgery; Director, Breast Center, University of Michigan, Ann Arbor

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.

Cancer may cause my death. But it WILL NOT take my life. **** Bilat Mastectomy 10/17/08 No Recon Dx 6/25/2006, ILC
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Feb 11, 2009 06:10PM slmdavidson wrote:

Hi Cathi

Thanks so much for including that info!  Very interesting how high the recurrence rates are! 

Laura

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Feb 18, 2009 07:16PM Dressagerider66 wrote:

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 

Dressagerider 66-Ingrid Dx 1/9/2009, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR-, HER2-

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