Stage 1 IDC one side - bilateral mastectomy

JLF

I have dense breasts. In 2013 mammogram was negative for lumps, but then two months later a lump was palpated by my GYN, Ultrasound revealed a cyst. Then again in 2014 mammogram was negative, but same lump palpated by GYN and turned out to be IDC. I cant' rely on my self-exams because they are so bumpy. Even the breast team agreed they are very bumpy. So I decided just have them both removed to eliminate the guesswork and potentially harmful repeat mammograms. Is anyone else in this situation? Thank you.

hummingbirdlover

Hi there and yes, I was in the exact same position and made the same decision.  I had more than one tumor in my right breast, so that one had to go and I knew immediately that if one was going, both were going.  I didn't know I had dense breasts until this nightmare began but I didn't want to spend the rest of my life waiting for it to happen on the other side.  When I was talking with my surgeon, he told me if I only had one removed I would be scheduled for MRIs and ultasounds rather than mammorgrams from here on out on the healthy side and I thought that sounded like a huge pain.  I also thought (and we'll find out soon) that reconstruction might be easier with both sides being done at the same time.  It was absolutely the right decision for me.  Good luck in your journey, I wish you all the best!!

Anonymous

Just wanted to chime in that I was in a similar situation and went with a nipple sparing bilateral at age 43. That was over 4 years ago. Not one regret. I know (for me) the every 6 month MRI's/mammograms would have been way more stressful. And yes, you generally get a better result with (implant) reconstruction when you are doing both. Plus the natural side will fluctuate with your weight/age more so than the reconstructed side.

JLF

Oh my gosh thank you hummingbirdlover and SusanGarden. This is such an important and personal decision so I really appreciate your responses and am glad to hear not regrets and you are doing well!!

mdg

I had a clean mammo and then a few months later found the lump which was about 1 cm at the time.  I was told it looked like a fibroadenoma and to come back in 6 months.  When I went back 6 mo's later it was IDC 1.1 cm.  I was stage 1 but since the mammogram didn't even find the 1 cm lump, I did BMX. 

JLF

Yes! For me it was a cyst a year ago (not found on mammogram), then this year it was 1.8cm IDC, not found on mammogram. Agreed we can't mess around with this ambiguity. Thank you for sharing!

cgarci23

hi i just found out 2 days ago that i have IDC stage one lump is 1 centimeter what all that means not sure but guess as time goes on it will become more clear.. Now i have to do a MRI i had one done once before but couldn't handle it . Up now at 2 am wondering how the hell I'm going to get thru this 45 min procedure when i didn't even last 15 min. Dr gave me a sedative but I'm not sure thats going work my mind is already racing any suggestion?

ml143333

I had a BMX in August.  My breast cancer was on the right side, but since I was going ahead with immediate reconstruction and I didn't want to have to worry about it occurring in the left, I went with the BMX.  I don't regret it at all.  Cancer could still come back or occur with BMX, but chances are low.  I too, won't get mammograms, but MRI and ultrasounds.

 

JLF

Thank you Mandy and best of luck!

Positive_spirit

I was diagnosed with DCIS in one quadrant of my L breast and fibroadenoma on the other quadrant. Went in for a lumpectomy on Jan 7, 2015. Pathology report came back with 3 tumors of invasive ductal carcinoma; all < 2cm. Scary! I am worried and decided to go in for a bilateral mastectomy on Jan 30 at MGH in Boston, with direct reconstruction. I am ok with the surgery decision, but they will do a sentinel node biopsy to determine spread as I had signs of lympathic invasion on the tumor. Mixed emotions.

JLF

Thank you for sharing Positive spirit and I wish you all the best today!

fralaliso

Hi, I was in the same situation. Extremely dense breasts. GYN exam felt the lump in Dec 14. Went for mammo and nothing showed, but it did show on ultrasound. 2.91cm IDC in right breast. Decided to go w/ BMX as I had no confidence that a cancer in the other breast would show on mammo. Had BMX on 1/16/15. BS called on 1/27 and told me post BMX pathology showed IDC in my left breast too .5cm. So thankful I went with BMX. I understand having synchronous bilateral breast cancer is extremely rare, but this shows that it does happen!

All the best to you with your surgery!

PennyForYourThoughts

Hi, I am so relieved to find that I am not alone in this ordeal - not that I'm happy that anyone else has to go through this. I was diagnosed on 12/19/14 with IDC stage 1 grade 3 on the right side after dealing with a stereotatic biopsy, ultrasound biopsy and MRI biopsy which all failed to biopsy the tumor due to the density of the breast tissue. I have extremely dense breast tissue in both breasts and have been struggling with whether or not to have BMX. I don't want to have to deal with annual mammograms and MRI's and the worry of BC showing up again and having the same trouble diagnosing it. I also don't want to do radiation.... I am worried about going with implants for reconstruction though because of the things that I have heard about implants, but it is my best option at this point. I am going crazy trying to come to terms with all of this and appreciate any wisdom you can give me. Thanks and warmest wishes for the best!

Dancermom1999

Hi Pennyforyourthoughts.....I was diagnosed Nov. 2013 and with dcis and 2.6mm of IDC left breast. I opted for a bmx and had my surgery in January 2014. My mom had bc 2x and like you did not want to go through the mammos each year and then get the dreaded call back like I did for the past 7 years and I did not want radiation either. I opted for the implants and am very pleased with my decision. Went thru the reconstruction process of implant exchange, nipple recon, and then the areola tattoos. I must say my breasts look very, very good. My PS did an amazing job. I was fortunate that since my IDC was so small I did not need chemo. I was on tamoxifen for 1 year and now am on anastrozole as I am now post menopausal and had a bad time on the tamoxifen. Hope this helps. Wishing you the best.... I have just passed my one year mark!

PennyForYourThoughts

Hi Dancermom19...your response definitely helps - what you went through for 7 years is exactly what I want to avoid. I am happy to hear that your reconstruction process turned out so great! That is awesome. Did you go with silicone or saline? I'm glad that you did not need chemo. I go today to talk to the medical oncologist about my OncoDx score to see if I will be doing chemo or not....so much to think about. I know that all this is REAL, but it still seems pretty surreal. I guess that has to do with having the lumpectomy and sentinel node biopsy and then nothing and then suddenly I have to make some pretty tough decisions... I expect that I will be on an AI as I am post menopausal - glad that you are no longer on tamoxifen - I hope anastrozole is better for you. Congratulations on passing your one year mark!! Thanks again for your response - it is reassuring. Best wishes!

JLF

So I have some really good news. I got some results of the samples tested from the operation. There is no skin involvement (tumor was close to skin so they had to rule that out). They also verified that of the 11 nodes taken, only one had the microcancer (less than a millimeter). The breast tumor was small - 1.3 cm. Since this cancer affected a lymph node in addition to the breast it is (was) Stage IIa. She said I do not need radiation. However they are still waiting for the results of one more test (oncotyping) of the tumor. I'll go those results this week. Also she told me both sides had pre-cancers so I'm really glad I had them both removed. again - really glad I had them both removed!!! Also feeling good - some Breast discomfort (really tight and some soreness) but very manageable. Had drainage tubes out 4 days ago. Thanks to this discussion group for information, validation and support

GaGa60

Do you mind telling me how old you are. Why did they decide on chemotherapy was at your age?

GaGa60

could you please tell me why you had to have chemotherapy was it because of your age I am 61 and they have not suggested that I have chemotherapy just hormonal therapy, I have the same diagnosis as you. Thank yo

scvmom65

Hi JLF,

It is very hard when you have dense breasts because you can't rely on self exams and mammos are not 100 percent acccurate. I was in the same situation, very dense breast, had a cyst in my left breast removed when I was 35 and was then scheduled mamos every 6 months because of density. Had another cyst removed in my right breast in 2009. Had my 6 month mammo the beginning of 2010, told numerous calcium deposits on left breast but none on right, got a second opinion and was DX with cancer after needle biopsy. My mammo AND mri showed 2 tumors on left breast, I decided to get them both removed. My pathology came back that I actually had 8 tumors! That just cemented to me the fact that I made the right decision since mammos can't see everything. I think it comes down to an individual decision on what gives you peace of mind, and for me I chose being proactive and not wanting to live in fear.

JLF

Hi scvmom65,

Thank you for sharing and thank goodness you had them both removed!

Take care

JLF

Hi GaGa60,

I am 48 years old. I'm still waiting for the oncotesting score (risk of recurrence) of the tumorbefore they decide if I need Chemo. I expect to find out this week.

debiann

I had IDC, left side 1.9 cm. It was found by mammo, but they tell me it has been growing there for years so why wasn't it noticed sooner? I choose bmx too, after much deliberation. During the decision making process I named them. Lefty was "weak link" and righty was "collateral damage".