BLM, made my decision, but need support

alexandria58

Hi.  I'm new here. My story.  I'm 58 - always healthy, healthy diet, reasonable amount of exercise. I'd had three biospies in the left breast, nothing in the right, until my mammogram in January noted abnormal calcifications in the right.  I was diagnosed with DCIS, grade 2 and 3 in February.  Still in shock, I immediately went for a lumpectomy.  My first BS looked at my pathology after the lumpectomy and said, congrats, margin looks fine, but you have to have radiation.  I talked to the radiologist and felt uncomfortable with rads and taking Tamoxifen.  Still I thought I'd go along with it, but I wanted a second opinion first.  Went for second opinion to Charles Simone, author of a book on BC, former nih researcher, who pointed out that along with the DCIS I had atypical lobular hyperplasia in the margin, and atypical ductal hypeplasia in the mass removed, that increased my risk of a recurrence since the rads wouldn't kill off those cells, and recommended a mastectomy.  Went for another consult with a BS and medical oncologist  who recommended rads and tamoxifen, and discounted the atypical hyperplasia in the margin.  Said it didn't increase my risk.  Except that I found an article from August 2010, stating that atypical lobular hyperplasia in the margin significantly increased risk.  Still uncomfortable, went to Anne Rosenberg in Philly, who pointed out that  the DCIS had been spread over 7 of 8 sections taken from my breast, and that the area removed had been 7 cm by 4 cms.  Given the size of the DCIS, she recommended mastectomy.  She also pointed out an area on the left breast  mammogram that she thought looked suspicious.  Finally made my decision. From everything I'e been reading, I did not want to gamble with the DCIS coming back on the right as invasive or  that I would be in the 80 percent that didn't get cancer in the second breast. I'm also a little concerned, from reading various threads here, about a microinvasion. I'm having a BLM, no recon, on April 25 with a SNB.  I'm comfortable with the decision but I'm nervous about the surgery. Decided against recon both because I hate and fear surgery, and do not want the the prospect of multiple additional surgeries, and for political reasons, that I think our society puts too much emphasis on breasts and judges women too much by the appearance of breasts. I respect and honor any woman who decides differently and gets recon, it's such a personal decision, but I believe that I will still be beautiful, even if flat. 

Still have people - a very close aunt - questioning my decision on the BLM, thinking it's unnecessary.  I could just use support.   

Snobird

It is your decision to make. Trust your instincts they are usually not wrong. Many people mean well but they are not walking in your shoes. It sounds to me like you've done the research and are making the right choice for you. I had a very close aunt who is a BC survivor not understand why I had BMX/DIEP when only one breast was affected. My choice and I'm extremely happy with the outcome. Go for it and don't look back. Good Luck!

rowan

Hi Alexandria,

I agree with Snobird--your gut will tell you what's right for you.  I had a BLMX with TEs on 3/21.  I had a previous daignosis in '98 in same breast--lumpectomy, radiation, and chemo.  I couldn't tolerate tamoxifan, so I had a total hysterectomy.  This second diagnosis really gave me and my husband  a terrible shock and I don't want to go through that again.  I was extremely fearful of the MX so I finally got a prescription of valium from my primary doctor.  The medication really helped.  I also write on this board with questions and concerns and have found the responses to be informative and soothing.

I decided on recon because I just couldn't picture myself without breasts--or a facsimile thereof. I agree with your assessment of society, but I did what felt right for me. 

kathy1925

Hi, I had a BLM without reconstruction last May, and am very happy with my decision. I told the BS prior to surgery that I didn't want skin sparing surgery, and I am flat, with no puckering, and the scars have faded to nearly invisible. I was an a/b cup prior to surgery. Like you, I am also 58 years old, and had had 3 core needle biopsies over a period of 5 years(right breast). The 3rd biopsy showed DCIS, grade 3. The BS ordered a bilateral MRI prior to my lumpectomy. The right breast lumpectomy was performed in April, with an excisional biopsy of the left breast at the same time. The path report came back with IDC low grade in the left breast, and ADH, ALH also. The amount of IDC was very small, and a lumpectomy was recommended. I was concerned about having radiation on both breasts, and also the additional "stuff" that was percolating in both breasts.Making the decision on how to proceed was agonizing.  I had the BMX with sentinel nodes from both sides in May.The BS said I had made the right decision. I haven't looked back since. As others have said, it is a very personal decision, but once made, I felt a great weight had lifted.

kathy1925

Hi, I had a BLM without reconstruction last May, and am very happy with my decision. I told the BS prior to surgery that I didn't want skin sparing surgery, and I am flat, with no puckering, and the scars have faded to nearly invisible. I was an a/b cup prior to surgery. Like you, I am also 58 years old, and had had 3 core needle biopsies over a period of 5 years(right breast). The 3rd biopsy showed DCIS, grade 3. The BS ordered a bilateral MRI prior to my lumpectomy. The right breast lumpectomy was performed in April, with an excisional biopsy of the left breast at the same time. The path report came back with IDC low grade in the left breast, and ADH, ALH also. The amount of IDC was very small, and a lumpectomy was recommended. I was concerned about having radiation on both breasts, and also the additional "stuff" that was percolating in both breasts.Making the decision on how to proceed was agonizing.  I had the BMX with sentinel nodes from both sides in May.The BS said I had made the right decision. I haven't looked back since. As others have said, it is a very personal decision, but once made, I felt a great weight had lifted.

JanetinVirginia

Like the others have said, after researching, follow your instincts.  I had "clean" mammo but 2 mos later gyn said he felt a general 'thickening' and ordered US.  Had excisional biopsy with a general surgeon, margins not clear.  Did a lot of research on recurrence rates for each procedure, radiation risks, follow-up, etc.  Consulted two breast surgeons and decided on L mastectomy at a NCI center in Sept, 10, no recon.  Good thing as it was multi focal (both DCIS & IDC).  I did not want radiation and I don't trust the screenings anymore for me.  Surgeon said had been growing at least several years and I had had mammos faithfully all that time.  I would have done a BLM in the beginning, but had just had an emergency appendectomy a few weeks before.  I didn't like the idea of having alternate MRI/mammo every six months indefinitely on remaining breast esp. not trusting results.  So, I waited 6 mos and just had a R prophy mastectomy on 3/23, no recon.  Honestly, both times I only had to take regular tylenol.  Pathology was non-cancerous but it showed a lot of activity going on. At my follow up last week, surgeon said she used my case at a surgeons' conference on topic of preventive mastectomy.   I am very glad I chose this path for me and don't mind being flat at all.  (I joked with my daughter that with prostheses, now I can be flat, a DD or a B depending on my mood.)  And yes - we live in a breast society.   Was appalled at news this week of padded bikini tops for seven year old girls!  It's a whole different story when they threaten your life.  One day healthcare will advance to a point where women will never have to make either decision!  Best of luck.

vmudrow

Hi Alexandria - I kind of know how you feel.  I was diagnoised with just ALH and the oncologist wanted me to take Tamoxifen, MRIs yearly (which might mean more biopsies, I had already had five), I was tired of the worry so I had masectomies.  My mom and dad and some others thought that was the wrong decision, but it felt right to me.  I did have reconstruction though and because it wasn't cancer I was able to have nipple/skin sparing surgery - I have been very happy with the results - and the surgeries weren't bad for me at all.  I didn't fine the masectomy surgery to be very painful.  So now no Tamoxifen, no MRIs, no mammograms, lot less worry.  Good luck and keep us posted.  Hugs, Valerie

kymberlimc

The right decision is the one that gives you peace.

I was also diagnosed with Stage 2 DCIS 6 months ago.  I'm 31.  My BS recommended a mastectomy due to the size of the area highlighted in my breast MRI (4.5 cm).  She also gave me the other option of a lumpectomy + tamox + radiation but strongly recommended against it. She said she doubted the margins would be clear.  I did my research on both and trusted her opinion.  Ultimately, however, I did not have peace about getting a mastectomy.   

I got a second and a third opinion.  I ended up switching surgeons, opted for a lumpectomy and we got clear margins.  I have completed radiation and just started tamoxifen.  I've also changed my diet completely.  I have complete and total peace about my decision.

It all comes down to my original point.  The best decision is the one that gives YOU peace.  You and I have similar diagnoses but made different decisions.  I think we both did the right thing.  

These choices aren't easy for anyone.  I admire your strength and the courage to go without reconstruction.   Trust the decision that brings you a sense of peace.  It won't lead you wrong. 

Wishing you continued strength and love,

Kim 

MamaMia41

Hi Alexandria,

I am in a similar situation; after a lumpectomy and re-excision were not able to produce acceptable clear margins I am also considering having a BMX.  I have high grade DCIS with necrosis, which I know is more aggressive and I do not want to be a repeat customer with my surgeon.  I feel I am at peace with this decision and it was very helpful to read up on the subject on this site.  No one can make this decision for you, and no one knows what it is like to go through all the testing and the waiting.  I personally don't want to be in this same situation in a year (or a worse one) and wish I would have just done the BMX to begin with.  Good luck!

alexandria58

Thanks, everyone.  I just got off the phone with yet another aunt and uncle, who want me to postpone the surgery and get yet another opinion.  They mean well, but they make me crazy. This was a difficult enough decision.  Anytime I start to doubt myself, I read some of the other boards.  I am so lucky not to be in a position where the cancer is in my liver or my bones. 

mrsnjband

Just wanted to tell my story.  I had bi-lateral mastectomy in July of 2008.  I had no reconstruction & I am very happy being flat!

Sending love & support. NJ

Lovegolf

It is your choice. I had DCIS and after lumpectomy 4/5 margins still DCIS. So I had BitalMX 5/1/09 with no reconstruction. Path report after BMX showed DCIS in other portion of the breast. So it was right choice for me.  Other here have made other choice that have been right for them. After getting all the information, talking to family friends you know what is your "fight plan".

debbie_58

I had high grade DCIS and in 2004 had a tramflap reconstruction and no RAD or chemo - I was cured.  I now have Invasive ductual carsinoma and liver mets. Cancer came back in scar tissue on my reconstructed breast (which I might add was a fantastic reconstruction job) and seem to grow in my liver at the same time. I should according to Docs not have had a recurrence. My surgery in 2004 was skin sparing but they took my nipple and about 2 years later got a pretend one that looks fine. I had no nodes involved then 0/2. Hard decision to make - I was 45 and wanted my boob back. I had mamograms every year but it just sneaked up on me in between. Just saying what happened to me.

alexandria58

debbie58

     I am so sorry. I've heard the odds are either less than one percent or 1 to 2 percent of this happening, but it still means it happens to one woman out of a hundred. 

     It is a hard decision, and it's terrible when that hard decision doesn't do what it's supposed to do. It sucks.

NotAfraid

I had DCIS on the right in 2004 with a lumpectomy and rads.  In January of this year, I had a biopsy on the other breast with 2 areas of DCIS and decided on a bi-lateral MX at that point (with DIEP recon).  I'm really glad I mae the decision for a 2MX as there was more than just 2 spots of DIEP in the left and one area (not one that was biopsied) was invasive. 

CTMOM1234

You will know what the right decision is for you; it is personal and one that only you can make. No regrets, whatever you decide, that's how I live my life and am happy with my decisions (rads weren't so bad, but I did choose to opt out of tamoxifen).

Wishing you good inner peace.