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Topic: Who else had Bilateral BC at time of diagnosis?

Forum: Mixed Type Breast Cancer — Meet others who have mixed type breast cancer.

Posted on: Oct 29, 2011 04:21PM

Boo307 wrote:

I was diagnosed with DCIS in the right breast and IDC in the left, had bilateral lumpectomies and bilateral radiation.  During radiation I found out that bilateral BC occurs in about 1% of the cases.  The last I checked BC.org didn't have a mechanism for me to fully profile my cancer.   Who is out there with the same experience?

Thanks.  Boo

Dx 3/18/2008, IDC, 1cm, Stage IB, Grade 3, 0/1 nodes, ER-/PR-, HER2+
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Apr 3, 2013 04:24PM grover wrote:

My diagnoses were literally a couple weeks apart, both IDC, but one triple neg, the other triple pos. Sentinel nodes tested before BMX, and involvement was seen on rt.(triple neg.) side. One of 14 removed had cancer. I have cording ( scar tissue in lymphatic system) under BOTH arms though, as well as additional cording down rt. arm. Going to PT to increase range of motion, break up cording, & and reduce chances of developing lymphedema. I have expanders in, too, and they're actually more irritating than the cording right now! This is definitely an uphill battle, with chemo, radiation, expander injections,and reconstruction still to come. I'm grateful for this site & all of you wonderful strong women sharing on it! I don't feel like I have much to contribute other than my experience, & it has helped me to read a wide variety of your stories. One thing I did learn, for those concerned about lymphedema, my PT told me to stop using heat ( which felt soooo good!) as it brings fluid to surface/ causes swelling/lymphedema. Well crap, did I NEED more bad news, really??

Surgery 1/17/2012 Lumpectomy: Right Dx 1/2013, IDC, Stage II, Grade 3, 1/14 nodes, ER-/PR-, HER2- Dx 2/2013, IDC, Stage I, Grade 3, 0/0 nodes, ER+/PR+, HER2+ Surgery 2/28/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 2/28/2013 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/2/2013 AC + T (Taxol) Hormonal Therapy 6/7/2013 Aromasin (exemestane) Radiation Therapy 10/7/2013 Breast, Lymph nodes Surgery 12/19/2013 Prophylactic ovary removal Surgery 4/17/2014 Reconstruction (right): Tissue expander placement Surgery Reconstruction (left): DIEP flap, Nipple reconstruction; Reconstruction (right): DIEP flap, Nipple reconstruction
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Apr 27, 2013 11:26PM ironmagnolia wrote:

Just an update --I posted earlier, before my surgery, that I too had bilateral BC, the 2nd breast diagnosed one week after the first by pre-op MRI that my BS always orders for her pts.

I saw my BS last week for a follow-up and she said she had recently caused a stir when she presented my case to a group of physicians. Apparently, pre-op MRIs are NOT the standard of care. Many surgeons think they are not cost effective and do not order them to check out the healthy breast. My 2nd breast tumor was not seen on either diagnostic mammo or US that had just been done. 

I had no idea that this is not done routinely, and am so thankful for my thorough BS!! I feel certain that she saved my life by doing this MRI, because I feel that the 2nd tumor would most likely have not been found until at least a year later, with a potential worse outcome.

I too am BRCA negative, Oncotypes were both low so no chemo. Had BMX with DIEP, and doing Arimidex for 5 years. 

It is still such a puzzle to me that I grew these tumors in both breasts simultaneously. 

Dx 1/30/2013, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 2/11/2013, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/3/2013 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 4/22/2013 Arimidex (anastrozole) Surgery 9/22/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Apr 28, 2013 12:24AM Beckers wrote:

Iron magnolia, it puzzles me too. I'm glad you rocked their boat and I hope your case plants a seed in their minds even if one life is saved down the road. I used to get very aggravated by my first cancer center and all their statistics! Common sense tells me it's not usual for us to get two BC's.

Glad your oncotype was low and you don't need chemo. How's Arimidex? I am considering switching from Tamoxifen.

Diagnosed with bilateral or synchronous breast cancer Dx 3/2012, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+ Dx 3/2012, IDC, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 10/13/2012
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Apr 29, 2013 06:46PM ironmagnolia wrote:

Beckers--Just started Arimidex one week ago, so far, so good. (I almost hate to type that. I'm waiting for the other shoe to drop Undecided)

I have a friend who is on her 4th hormone therapy drug due to side effects. Hoping I do OK on it because my Onc thinks it is more effective than Tamoxifen. 

Just went back to work today on partial hours after my bil DIEP. PS says his nurses always stay off work for 8 weeks. I have t admit, I was beat after 5 hours. Cry

Dx 1/30/2013, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 2/11/2013, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/3/2013 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 4/22/2013 Arimidex (anastrozole) Surgery 9/22/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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May 3, 2013 04:27PM Skagitphoenix wrote:

Hello beautiful ladies!

I'm not sure, but I think this is where I belong. About a month ago I was diagnosed with IDC (biopsy results) in my left breast. Also triple positive. I had an MRI a couple weeks ago that showed a vague mass on the right breast. I opted for a bilateral mastectomy. After surgery I was told that the mass on my right breast was a misread or over-read from the MRI. There was no cancer on that side - yippee! Then on Tuesday I met with my surgeon to have my drains removed. I asked about the pathology & he was flabbergasted by the results. The results confirmed the three known massses of IDC on my left breast, but also showed three areas of LCIS on my right breast.

My oncologist was also very surprised by the results. I don't know if having the two types of breast cancer is rare or that the tissue looked normal to my surgeon is what is rare or both, but my case is going to be presented at some board. I think it will be to promote the use of MRIs, since apparently the MRI was correct. So, hopefully my case will help others.

From what I've read here & other places it appears that not many of us have DC & LC, let alone have them in separate breasts, not comingled or blended or anything. I think its especially strange that I have the same number of tumors on each breast.

Cancer certainly is a strange beast.

Dx 3/15/2013, IDC, 1cm, ER+/PR+, HER2+
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May 3, 2013 05:14PM happyraccoon wrote:

Yo Softball...me too!  Same exact.  One biopsy (IDC) was enough for me.  When they took both breasts to the lab, they found the "lesions" on the other side were invasive ILC.  I've read it's called sychronous bilateral bc.  I'm guessing it's a lot more common than they think.  I was surprised that I could be growing two different types.  I'm very lucky that my intuition pointed to the bilateral approach!  Nice to hear from you.  And best.

Dx 7/16/2012, IDC, 2cm, Stage II, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 8/29/2012, ILC, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/29/2012 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 9/23/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 2/15/2018, IDC, Left, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- Surgery 3/19/2018 Lumpectomy: Left Radiation Therapy 4/30/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 7/16/2018 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
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May 3, 2013 07:07PM AmyJax wrote:

I'm so glad to see your posts. I don't think there are many of us that have synchronous bilateral BC. I had an MRI earlier this year that showed three suspicious areas, two on the left and one on the right. After one ultrasound guided and two MRI guided biopsies my biopsy results showed IDC on the right and DCIS on the left. After a lot of soul searching I decided on a bilateral mastectomy with reconstruction. When they got the pathology back my surgeon started the conversation with: "This is not the news that I expected to be delivering......" I also had ILC, LCIS, and a positive lymph node on the left side. That was kind of a crappy day. Two primary cancers.... One stage 1 and the other stage 2a.

So, as it turns out the intuition on the bilateral mastectomy was good for all of us. I know the data shows no difference in long-term prognosis between lumpectomy and bilateral mastectomy, but I'm not sure that would have been true for me.

My theory is it probably is more common than the data shows but most people don't get breast MRIs that show it so clearly.

Peace to you both.

Dx 2/25/2013, IDC, 1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 3/27/2013 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 3/27/2013 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement Dx 4/2/2013, ILC, 1cm, Stage IIA, Grade 1, 1/17 nodes, ER+/PR+, HER2- Surgery 4/8/2013 Lymph node removal: Left, Underarm/Axillary Chemotherapy 5/14/2013 AC + T (Taxol)
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May 3, 2013 07:55PM Moonflwr912 wrote:

Hello ladies. I think you are all right, it has to be more common then thought. After all, I know I always got a sit in almost the same spot on both sides if my face, more often than not. Not exactly the same spot, but nearby mirror image. So I was even more convinced to do s BMX, and of course lucky as that's where they found IDC.
Just a thought for you ladies, this thread isn't one that moves very fast. So if you want to connect with more people. Check out some others. Try triple + if you are or one of the other threads that fit your Dx. A fun one is what's for dinner. But that one just flies. Also, try the thread that has your tx on it, such as the TCH board. Also a good one is if you are doing RADS, or chemo,.look for one that starts the month you are starting. Everyone will be going through the same things as you are at the same time. The treatment (tx) ones, will have people at various stages of tx, so there will be guides as to what they faced. Hope that helps you connect with support. Much love.

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/8/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/17/2012 Reconstruction (left) Targeted Therapy 2/16/2012 Herceptin (trastuzumab) Chemotherapy 2/16/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/13/2012 Reconstruction (left): Tissue expander placement Hormonal Therapy 8/20/2012 Arimidex (anastrozole) Surgery 9/10/2012 Reconstruction (left) Surgery 8/14/2013 Reconstruction (left): Tissue expander placement Surgery 9/4/2013 Reconstruction (left) Surgery 12/13/2013 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Jun 9, 2013 09:20PM SheriBell wrote:

Hi there - also was diagnosed with bi-lateral bc.  Had IDC and DCIS in right breast and IDC in the left.  MRI was needed to see all masses - I detected the original mass in my right breast was over 2 cm.  Had yearly mammos and nothing was ever detected!

Start TC x 4 May 24th 2011 Done July 29, 11 Full reconstructions with silicon implants. Dx 2/17/2011, IDC, 2cm, Stage II, Grade 1, 1/5 nodes, ER+/PR+, HER2-
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Jun 9, 2013 11:40PM Moonflwr912 wrote:

Hi Sheribell! Had mammo the year before and looked ok. But they never did see my left breast tumor till surgical pathology. so, you play the hand you get dealt. much love.

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/8/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/17/2012 Reconstruction (left) Targeted Therapy 2/16/2012 Herceptin (trastuzumab) Chemotherapy 2/16/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/13/2012 Reconstruction (left): Tissue expander placement Hormonal Therapy 8/20/2012 Arimidex (anastrozole) Surgery 9/10/2012 Reconstruction (left) Surgery 8/14/2013 Reconstruction (left): Tissue expander placement Surgery 9/4/2013 Reconstruction (left) Surgery 12/13/2013 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Jun 9, 2013 11:59PM Doragirl34 wrote:

I had a routine mammogram that showed nothing. It said "see you next year"
The MRI detected something suspicious. Not till pathology did they see the other cancers. I had 3 tumors. 2 were to small to see.

Surgery 8/23/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/24/2012 AC + T (Taxol) Hormonal Therapy 2/19/2013 Dx 7/26/2013, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2-
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Jun 10, 2013 12:15AM Beckers wrote:

Have any of you gotten a clear understanding of how they know it's not metastatic BC in other side.

Diagnosed with bilateral or synchronous breast cancer Dx 3/2012, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+ Dx 3/2012, IDC, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 10/13/2012
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Jun 10, 2013 12:22AM Moonflwr912 wrote:

Beckers, not sure of your question? My first dcxwas Dcis on the right. After it was biopsied, and found to be grade 3, I made the decision to do Bmx due to family history. The PBmx was where they found a 1.6 IDC. Not exactly small, but it was missed on mammo and Ultrasound. Couldn't have MRI due to my pacemaker.

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/8/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/17/2012 Reconstruction (left) Targeted Therapy 2/16/2012 Herceptin (trastuzumab) Chemotherapy 2/16/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/13/2012 Reconstruction (left): Tissue expander placement Hormonal Therapy 8/20/2012 Arimidex (anastrozole) Surgery 9/10/2012 Reconstruction (left) Surgery 8/14/2013 Reconstruction (left): Tissue expander placement Surgery 9/4/2013 Reconstruction (left) Surgery 12/13/2013 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Jun 10, 2013 06:47PM Beckers wrote:

So... I'm assuming my right IDC was there first. How do I know the DCIS on left isn't mets. It has the same characteristics. I've tried to research and there are times when it qualifies as mets. Just wondered if any of you asked this and what response you got. My MO seems nonchalant about it. If that's the right word. It's uncommon and just wondering why and all.

Diagnosed with bilateral or synchronous breast cancer Dx 3/2012, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+ Dx 3/2012, IDC, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 10/13/2012
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Jun 14, 2013 06:44PM Moonflwr912 wrote:

The definition of Dcis is Ductal Carcinoma IN SITU. Meaning it has NOT LEFT THE DUCT. THEREFOR IT CAN'T BE METASTISIZED. Take a deep breath. Sucks to have cancer, but you get thru it by facing it, and not letting your fears get the best of you. Also, don't Dr. Google. Dr Google is hard to understand, use it only to get the questions you want to ask, rather than the answers, until you are able go process the info you have and can filter the tons of info that comes with regular Dr google visits! LOL much love.

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/8/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/17/2012 Reconstruction (left) Targeted Therapy 2/16/2012 Herceptin (trastuzumab) Chemotherapy 2/16/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/13/2012 Reconstruction (left): Tissue expander placement Hormonal Therapy 8/20/2012 Arimidex (anastrozole) Surgery 9/10/2012 Reconstruction (left) Surgery 8/14/2013 Reconstruction (left): Tissue expander placement Surgery 9/4/2013 Reconstruction (left) Surgery 12/13/2013 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Jul 3, 2013 07:24PM Kim2013 wrote:

Hi All,

I hope I am at the right place - please forgive me if I am not.  Also, please forgive my rather long, first post.

I have been lurking for a while, reading what I can, but now that I have a more definitive diagnosis, I thought I would post.

Since the beginning of the year, I felt what I thought was a rather large lump on the right side of my right breast, near my armpit.  I was an amazing mammogram-phobe, and put off seeing the doctor hoping that the lump would go away.  It did not, so in March, I reconciled myself to the fact that I most likely had BC and scheduled my first mammogram.  While the lump was very palpable, it did not show up well at all on either mammography or ultrasound (US) - only a small dark, confusing area showed up.  A core needle biopsy was scheduled in April and came back as ADH.  I was told it was probably nothing and the excisional biopsy with wire localization was scheduled for June 18th.

As a side note, the delay between the ADH diagnosis and the excisional biopsy was somewhat purposeful, as my MIL was diagnosed w/DCIS and had a mastectomy, and my father suddenly passed away - all this was going on at the same time, and there is only so much one can handle :)

The path report came back on the excisional biopsy (June 19th) and was positive for extensive ADH, extensive DCIS, and IDC throughout the entire tissue (5 x 3 x 2 cm).  Margins were not clear.  None of this showed up on either mammogram or US.  My BS scheduled and MRI (June 19th) and presented me to the tumor board (June 21st).

At the tumor board, I was told that the MRI picked up a small (0.4 x 0.3 x 0.4 cm), suspicious spot on the left breast, just under the nipple (never showed up on either to mammogram or US), and I was scheduled for another core needle biopsy of the left breast on June 28th, as well as genetic testing.

The path report on the left breast came back yesterday (July 2nd) as positive for IDC.  Both tumors are ER/PR+.  The right side tumor is HER2- and I'm still waiting the results for the left side tumor.

I am also still waiting on the genetic testing results.

My BS recommends BMX w/out nipple sparring.  I am so unhappy with this recommendation, as I've always approached this with the purpose of saving as much of my natural breasts as possible.  I was so hoping he would recommend further lumpectomies with rads, as that has been our discussion all along until the left side tumor reared it's ugly head and came back IDC right under the nipple.

I'm struggling w/the decision to agree to a BMX.  I do know that if the BRCA1/BRCA2 comes back +, then my choice is made for me and a BMX it is.  But if the BRCA1/BRCA2 comes back neg. and I just do further lumpectomies, am I just postponing the inevitable?  If the BC does come back, I would however, have my breasts for that much longer, which is a plus.  While they're not perfect, I like my breasts, and want to keep them if I can.  I'm also scared of what this is going to do to my husband's and my sex life, and/or how tamoxifen (which is also being recommended) will complicate matters.

I do have 3 young children, all under the age of 11, so I wonder if I'm making the right decisions (by trying to avoid BMX) by them as well.

Thank you for listening and offering any guidance if you choose to.  I appreciate these boards and all the help that is here.

Much love and thoughts of peace to you all.

Surgery 6/18/2013 Lumpectomy: Right Dx 6/19/2013, IDC, Stage II, ER+/PR+, HER2- Dx 7/2/2013, IDC, Stage I, ER+/PR+, HER2- Surgery 9/3/2013 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jul 4, 2013 01:55AM Moonflwr912 wrote:

Kim, hugs to you. That is a tough decision. I went with bmx. Due to my family history, although they gave me the option of lx. (lumpectomy) since they didn't even find the IDC until the bmx, some people said I was doing to much surgery. Nut its what I felt I had to do. My BS does not do nipple sparing because he considers nipples breast tissue, and says that you have to realize that there will be that much breast tissue. Since my IDC was behind the nipple, if I had the nipple sparring, it might have been missed. But, that is just me. I also didn't want to have to go through all this again. The fact that lx and rads leave the breast tissue more dense, and lumpy, I didn't want to mess with that either. But again, because of my history, mom and two aunts died of BC. , I did the bmx. Don't get me wrong, I loved my breasts, would rather have them, but it is what it is. I thought about it, made my decision, am comfortable with my decision. You need to be comfortable with yours. So you have to make it. And that sucks. But you'll do fine. Much love. This board is kind of slow, you should probably post on another one too. Not sure which would be most helpful. You could also post a question on a new thread and ask for opionions. much love.

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/8/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/17/2012 Reconstruction (left) Targeted Therapy 2/16/2012 Herceptin (trastuzumab) Chemotherapy 2/16/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/13/2012 Reconstruction (left): Tissue expander placement Hormonal Therapy 8/20/2012 Arimidex (anastrozole) Surgery 9/10/2012 Reconstruction (left) Surgery 8/14/2013 Reconstruction (left): Tissue expander placement Surgery 9/4/2013 Reconstruction (left) Surgery 12/13/2013 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Jul 4, 2013 02:07AM Moonflwr912 wrote:

Kim, also, on the main BCO site is an info page on mastectomy vs lumpectomy. There is also a fairly recent thread about that question, just search for lx vs MX. Good luck.

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/8/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/17/2012 Reconstruction (left) Targeted Therapy 2/16/2012 Herceptin (trastuzumab) Chemotherapy 2/16/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/13/2012 Reconstruction (left): Tissue expander placement Hormonal Therapy 8/20/2012 Arimidex (anastrozole) Surgery 9/10/2012 Reconstruction (left) Surgery 8/14/2013 Reconstruction (left): Tissue expander placement Surgery 9/4/2013 Reconstruction (left) Surgery 12/13/2013 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Jul 4, 2013 03:17AM - edited Jul 4, 2013 03:17AM by Kim2013

Moonflwr912...thank you so very much for your help. Much love

Surgery 6/18/2013 Lumpectomy: Right Dx 6/19/2013, IDC, Stage II, ER+/PR+, HER2- Dx 7/2/2013, IDC, Stage I, ER+/PR+, HER2- Surgery 9/3/2013 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jul 11, 2013 12:11AM Beckers wrote:

Kim,

Sorry you are going through this. I tested negative for all genetic tests avail, however, in my early 40's grew bilateral BC's, highly ER+ even after having ovaries removed in hysterectomy/ooph in 08. To me, I felt it logical to remove my breasts. I also did so to avoid radiation to my entire chest. Those were my feelings and I have no regrets. I was fortunate to be able to keep my nipples and skin and I also had DIEP reconstruction. So everything is mine.

Good luck to you in whatever direction you go.

Diagnosed with bilateral or synchronous breast cancer Dx 3/2012, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+ Dx 3/2012, IDC, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 10/13/2012
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Sep 30, 2013 09:15AM sept45 wrote:

Thank you so much for this thread!!! I was diagnosed 2 weeks ago with DCIS + IDC in both breasts. Total tumor size is .75 cm on left and 2.5 on right. IDC is .4 on left and 1.1 on right according to the biopsy. Lymph nodes on left looked good on ultrasound. I don't think they even checked the right as they couldn't even see that tumor except on mammogram. I met with my surgeon last week and she is recommending bilateral lumpectomy with rads. She said she will do a double mastectomy if I request it.  My grandmother had bc twice - once in her 50's (@1965) with a radical mastectomy and I think radiation and again in her 70's (@1985) with simple mastectomy.  None of her daughters or granddaughters have had it except me and I am the youngest. I am getting genetic testing for BRCA 1 & 2 as well as another panel that includes PTEN. If either come back positive the decision is easy. If not I have to make it. I can totally see the logic in lumpectomy but my gut is saying do bilateral mastectomy. I am meeting with a radiology oncologist this week to discuss radiation and have lots of questions. I met with my ob/gyn and a plastic surgeon last week.  They are not planning to do an MRI as my breasts are pretty clear and easy to see. She said they are also not planning to do Onctyping but I have a call in to see if I can insist on that. My gut is telling me there is more to this. It is such a hard decision. I don't want to do this again!  My stats for both are ER+/PR+ (95-100%) HER2- and low grade. It looks like we caught it early but it worries me that I have already managed to grow two tumors at 45. I have been looking everywhere for others like me and and only found a few until this thread.  Thanks so much for posting!!!

One more thing - the PTEN gene has a high risk of breast cancer and tends to occur in both breasts. I was surprised when they suggested I get tested for it but after doing some reading I see why. I had an Aunt die of a rare form of cancer that is usually not genetic but can be and is listed under PTEN. Melanoma is also listed (grandfather and I am high risk), uterine fibroids (check for me) and non cancerous tumors of a bunch of different types - I have had several various biopsies that were negative (colon "bump", bony growth in hand, various skin things) so I won't be floored if it comes back positive. You can google it under PTEN or Cowden's syndrome if you are interested.  It really freaked me out not only because it fits my family but because 15-20% don't test positive for PTEN so even negative test results won't make me feel much better - ugh!

Dx 9/17/2013, IDC, 1cm, Grade 1, ER+/PR+, HER2- Dx 9/17/2013, IDC, <1cm, Grade 1, ER+/PR+, HER2- Surgery 10/28/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/26/2013 AC + T (Taxol)
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Sep 30, 2013 12:49PM Moonflwr912 wrote:

Sept45, hugs. Hard decision but you will do whatever is right for you. Both my BS and PS AND my MO WERE SURPRISED by finding the IDC in my left breast after mx. My feeling that something was hiding and my family history sent me down that route. Much love.

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/8/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/17/2012 Reconstruction (left) Targeted Therapy 2/16/2012 Herceptin (trastuzumab) Chemotherapy 2/16/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/13/2012 Reconstruction (left): Tissue expander placement Hormonal Therapy 8/20/2012 Arimidex (anastrozole) Surgery 9/10/2012 Reconstruction (left) Surgery 8/14/2013 Reconstruction (left): Tissue expander placement Surgery 9/4/2013 Reconstruction (left) Surgery 12/13/2013 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Sep 30, 2013 03:04PM aviva5675 wrote:

I had lumpectomy and oncoplasty in July. In the the tissue removed they found a smal invasive tubular tumor on the left side- which had the reduction as no concerns ever for cancer. On the right they removed the original dcis and also found a larger invasive combo ilc/idc on the right side that had been just missed by the biopsy.  Even if the left tumor hadnt been found I wouldve gone bilateral mastectomy to avoid living life waiting for the other shoe to drop.

Run Towards Not From --we can all do it...on FB and www.runtowardsnotfrom.com Dx 7/2013, DCIS, Stage 0, Grade 3, ER+/PR+, HER2+ Surgery 8/12/2013 Lumpectomy: Right; Reconstruction (left) Dx 8/16/2013, 1cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- Dx 8/16/2013, ILC, 2cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- Surgery 8/22/2013 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 9/17/2013 Arimidex (anastrozole) Surgery 1/9/2014 Reconstruction (left); Reconstruction (right) Surgery 5/22/2014 Reconstruction (left); Reconstruction (right) Surgery 11/20/2014 Reconstruction (right) Surgery 10/29/2015 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Dx 6/2020, ILC, Left, 1cm, Stage IV, Grade 3, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Oct 1, 2013 01:28AM Beckers wrote:

Wow on th PTEN results issue. I tested negative but head measures very large. :-/

Diagnosed with bilateral or synchronous breast cancer Dx 3/2012, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+ Dx 3/2012, IDC, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 10/13/2012
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Oct 1, 2013 08:38AM sept45 wrote:

One of the lighter moments in all of this was when they had to tell me that they thought I should be tested for PTEN because I have a large head.  There really isn't a diplomatic way to do that! Mine is 57 3/4 cm and they recommend testing at 58. I also looked at some pictures online and a couple on medical sites that are supposed to show some of the skin issues in the mouth and they look pretty normal to me. I can't figure out what they are trying to illustrate.  Dh was laughing because I keep looking in the mirror and then looking in his mouth trying to figure it out.  I just wish the testing were faster!

I'm not going to make a decision until I talk to the rads doc.  This is so hard!

Dx 9/17/2013, IDC, 1cm, Grade 1, ER+/PR+, HER2- Dx 9/17/2013, IDC, <1cm, Grade 1, ER+/PR+, HER2- Surgery 10/28/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/26/2013 AC + T (Taxol)
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Oct 5, 2013 03:37PM RhodyMMM wrote:

Guess I will jump in too. I was diagnosed in May, the radiologist who did the biopsies told me I had DCIS on the left (one area) and two areas of IDC on the right. I opted to go for the BMX because lumpectomy was not an option for the right side, and it did not make sense to me to leave one side with the potential for further disease. So I had the BMX in June. The pathology report came back to confirm the DCIS on the left, and the IDC on the right. Report said ER+/PR+/HerS equivocal. Because the Her2 was equivocal, (meaning not clear whether it was low risk or high risk for recurrence) they sent a tissue sample for oncotype screening. This process took a number of weeks, we did not get any preliminary results until early August. Thank goodness they opted to send the sample out for oncotype testing because it came back triple negative (ER-/PR-/Her2-). Turns out that only one of the tumors from the mastectomy had been sent for pathology. They thought they looked the same, turned out that the radiologist had only caught a piece of the corner of the second tumor which was positive. The deeper part was admixed and triple negative. So I spent my summer pretty much thinking that I would be taking Arimidex for 5 or 10 years and that would be it. I got the call a week and a half before my daughter's wedding that they wanted to start chemo ASAP because we were at the end of what they call a 12-week window from the time of surgery until the time of first chemo. So we got my daughter married and I had my first chemo immediately thereafter. I have had a number of complications along the way (too long to tell the story), but inevitably when I meet a new doctor, CRNP, or PA I hear "my do you have an interesting case!" I'm certainly happy to be interesting to people, but would certainly much rather that it was because of something else! As I said, I am so thankful that the sample got sent, at the same time I can't help but be a bit upset with the radiologist who did not get a good biopsy sample in the beginning. Now I worry about the delay.......but have to remind myself that the alternative could have been that they never sent the oncotype out and we would have been thinking circumstances were very different!

I wish you all the best in your journeys.

Martha

Dx 5/10/2013, IDC, 1cm, Stage II, Grade 2, 2/20 nodes, mets, ER+/PR+, HER2- Surgery 6/11/2013 Lymph node removal: Left, Sentinel Surgery 6/11/2013 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Dx 8/19/2013, IDC, <1cm, ER-/PR-, HER2- Chemotherapy 9/5/2013 AC Chemotherapy 11/25/2013 Taxol (paclitaxel) Hormonal Therapy 4/3/2014 Arimidex (anastrozole) Hormonal Therapy 11/5/2014 Aromasin (exemestane)
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Oct 15, 2013 01:02PM Momine wrote:

I had stage 3B ILC in the right breast. Nothing was found in the left during scans etc, but I opted for a prophy MX and the path report showed LCIS.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Oct 15, 2013 01:56PM aviva5675 wrote:

Had dcis in the right, got lx and reduction for left. Path rept came back with invasive tubular found in tissue removed from left side reduction, and the dcis on the right, as well as a larger invasive mixed ductal/lobular tumor on the right- that my original biopsy just missed. Went back in10 days for bmx.

Run Towards Not From --we can all do it...on FB and www.runtowardsnotfrom.com Dx 7/2013, DCIS, Stage 0, Grade 3, ER+/PR+, HER2+ Surgery 8/12/2013 Lumpectomy: Right; Reconstruction (left) Dx 8/16/2013, 1cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- Dx 8/16/2013, ILC, 2cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- Surgery 8/22/2013 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 9/17/2013 Arimidex (anastrozole) Surgery 1/9/2014 Reconstruction (left); Reconstruction (right) Surgery 5/22/2014 Reconstruction (left); Reconstruction (right) Surgery 11/20/2014 Reconstruction (right) Surgery 10/29/2015 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Dx 6/2020, ILC, Left, 1cm, Stage IV, Grade 3, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Oct 16, 2013 07:37AM Delvzy wrote:

just had to jump in girls I think we are more common than you think in our aust forum nearly 1/2 of us had multiple diagnosis. I had a 10mm lump on my left side IDC and wide spread DCIS on right after right mx and left lumpectomy I didn't get a clear margin on my left side so I went back and they found a 5mm ILC both grade 3 with 1/14 nodes involved. That is 3 different types of BC no family history of cancer ever.

Dx 9/8/2008, DCIS, Stage 0, 0/4 nodes, ER+/PR+, HER2- Surgery 10/11/2008 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/23/2008 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Methotrexate (Amethopterin, Mexate, Folex), Taxotere (docetaxel) Hormonal Therapy 3/1/2009 Dx 11/1/2016, Stage IV, metastasized to bone, ER+
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Jan 18, 2014 02:20PM L2girl wrote:

hi, 

Even though this thread is sort of dead, or maybe sitting in limbo, just thought I'd post to revive it a bit. I remember when I was first diagnosed, I was desparate to find more info on bilateral breast cancer, so figure there are still others out there looking.

I was diagnosed with synchronous bilateral breast cancer this past summer of 2013. I was 47 years old. I had a pretty big family history, though I am BRCA negative. 

I was first diagnosed with IDC in the left breast in June, followed by more tests (pet scan, breast MRI, etc.) and another biopsy in July which also revealed cancer in the right breast. (it was first thought to be DCIS, but after surgery was found to be IDC also.) 

In August I had my surgery: bilateral lumpectomies and bilateral SNBs. The cancer in the left breast was larger and somewhat more advanced than the right, and there were micro metastasis in the left sentinel node.

My oncotype dx tests showed low risk for both tumors, so no chemo was needed. 

September through end of November I underwent 10 weeks of radiation, 6 weeks on each breast, (but overlapped a couple weeks where I had radiation treatments to both breasts at same visit, so 60 tx took 10 weeks instead of 12).

I did really well throughout radiation. I worked through it all. (The only time I missed work was for 3 weeks after my surgery.) My skin held up very well, and fatigue was pretty minimal. I did develop some later fatigue, starting a few weeks after finishing rads, and still continuing now, but nothing too terrible.

This month I started tamoxifen, for 5 to 10 years. (Maybe 5 of tamoxifen, followed by 5 of an AI once I reach menopause). So far so good, haven't noticed any side effects yet. Hope not to.

One thing I wanted to mention is when I first found out I had cancer in both breasts, I felt very devastated, and thought my prognosis must be very poor. But my MO said that they just go by the worse of the two sides, and that is your prognosis. So in my case, I am stage 1b. Still very good prognosis. 

I also used to feel very fearful that since I had gotten cancer in both breasts, that I must be more prone to it, or somehow more "diseased". I mentioned to my MO I felt like I was waiting for the other shoe to drop. He said, well, maybe it already has. After that, I began instead to think maybe I already had a recurrence, it just happened at the same time. So, if that were the case, what would be the odds of yet another recurrence? So now I feel much less scared than I did in those early months after diagnosis.

So, that is my story, and hopefully it is of some help to someone.

Synchronous bilateral breast cancer. Age 47 @ dx. Dx 6/20/2013, IDC, Left, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Dx 7/24/2013, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 8/8/2013 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel Radiation Therapy 9/15/2013 Breast Hormonal Therapy 1/7/2014

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