Trying to work up the courage for surgery

What surgery are you fearing?  Mastectomy?  How large was your tumor? 

I felt like that when I was diagnosed last year but after a while I stopped thinking about it so much. I too am getting six-month alternating mammos & MRIs. Just had my 1 year anniversary mammogram in November & it was fine. MRI coming up April 1st. I don't think I fear cancer as much as an endless cycle of repeat biopsies and anxiety. If that starts happening I may reconsider. i do wish I could take an AI to reduce my risk but I have been told unequivalently NO twice now because of clotting risk since I have had a pulmonary embolism.

Hi Cdehls, I am in a similar situation as you.  My mom took Tamoxifen and although she has had great results (cancer free for 13 years - she had DCIS) it slammed her hard into menopause a bit prematurely (emotionally it was very hard on her and her husband.  A small price to pay for a healthy mom, though!!) My step mom also took it after a unilateral mastectomy and blames Tamoxifen on her need to have a quintuple bipass.....I didn't have the heart to tell her that the bipass was more likely the result of 30 years of smoking 2 packs a day - but I digress!  Again...she's healthy now and I'm grateful for that! 

My husband and I made a decision after my first excision last summer... One more excision and then I'll have a PBMX. Since I just had my 6 month mammo/US this past Tuesday and my other "non problematic" breast came back with a large cluster of microcalcifications - in just 6 months..(very busy boobs!) I am having a sterotactic biopsy on Feb 21st and if it comes back that I need to do anything else I guess I have to make a decision. I am in my 3rd year of nursing school so I won't do the PBMX during this semester - but do i really want to spend my summer off recovering from that?? I'd rather have fun with my kids and hubby!!

My BS recommended Tamoxifen (the first time around) but also let me know that my insurance would cover a PBMX as well. (of course! It's pretty twisted that my body parts become expendible to save $$ for the insurance company. Again...I digress). He also advised me that it was a bit pre-mature, "let's see what happens in 6 months". So here I am...

I have to say that this site and the women who are on it are awesome!  They've helped me put into perspective all of my options for sure. 

Not sure if I was helpful but just wanted to let you know that there are others right there with you.  

It has taken me a year to make the decission to have surgery. I will be going in on Feb. 8th 2013. Don't rush it can wait. Good luck. I am also on Tax.

Hi Cdehls

I was DX with LCIS after a stereotactic biopsy, choice given to me was wait and see in 6 months if anything changes or do a surgical biopsy. I chose the surgical biopsy just to get it out, I didnt want something in me that didnt belong. Found ILC 2mm in size in addition to lcis and dcis. We asked immediately if a MX would be the route and we were told there was no medical reason to do something so drastic. Just had SNB, nodes clean So here I wait next step Rads. I am not sure either and know how you are feeling. I plan on insisting on a MRI of BOTH breasts, I have not had one and I need to know if there is anything else lurking in there and I also want my left side looked at closely as I need some peace of mind. I just cant help but think if its in one its in the other. These results will help me to know if I go forward with the rads+tamox or if I say just take them and go from there. I do not want to do that I actually at 44 still like them but I like living more.

LCIS may always be LCIS it may never do anything but it may as I quickly found out. Scary, so scary. I wish you the best of luck with your decision, only you can make it. I know how you feel and it is not easy. I have learned we have to be at peace with our decision so be sure in your heart all your questions are answered.

take care.

Hi Ladies,

In response to the post "Trying to work up the courage",  I felt I needed to weigh in on this.  I was diagnosed with ALH 5 1/2 years ago.  At the time, we (DH and I) were told there was no cancer, we just need to be "vigilant".  So, every year since, we have gone through mammograms and MRI's and visits to the breast surgeon every six months. 

The ALH dx gave me an increased risk of invasive bc which WILL increase every year.  In the past year, I have been upgraded to LCIS, after 3 left lumpectomies and one MRI guided biopsy in the right.  I must say, I am done being cut up.  I am 55 and still relatively healthy and married to a wonderful man (who went through 7 years of BC with first wife, now deceased) and have 3 beautiful daughters, 2 step adults and one grandchild;  Our youngest is 16 years old. 

Last summer I asked my bs how long I would have to continue to be vigilant,  the answer, "for the rest of your life".  My response, not happy.  It was then and there that I made the decision to go forward and search for the best solution.  In my need to lessen my overall anxiety, I felt more secure having a PBMX than reliving a cancer dx every 6 months.  DH agrees.  Having gone through BC once, he is not sure he could do it again. 

I am totally at peace with this path we have chosen as are all our 5 children ( ages 43, 38, 33, 30, 16 )   Besides the fear of chemo, rads, and other results, I feel surgery with recon is my safest bet.  Even if I was NEVER diagnosed with cancer,  I feel the many years I have ahead are filled with biopsy after biopsy......  I am already down one cup size on the left due to 3 lumpectomies.  Why not just have them even and 95% cancer free?!!!!

This is totally a personal choice and everyone finds their peace of mind in different avenues, but I have found mine and I am excited for my future and the benefits of an early dx.  PM me if you have any questions or concerns.

Best Regards, Marie

Hello!



My pathology revealed lcis after my pbmx last summer. Prior to this dx I had no other breast issues. I had the pbmx because of significant family hx. 6 relatives with bc. I wanted to get off the survalience roller coaster. It was the best decision I ever made. The peace of mind is priceless. Follow your heart! The ladies on this board are amazing, beautiful and funny! We are all here to help each other. Elise

Hi, ladies, I wanted to jump in here and share my story.  My mother died from BC when I was 14.  She was diagnosed at 38 and just had her 43rd birthday.  Her aunt (mother's sister) died premenopausely from BC, and my father's mother had it, as well.  I have been getting mamograms since age 20 and have had several suspicious lumps removed.

More recently, I started having "innumreable," as the report read, suspicious calcifications, and the radiologist called me back and said she was at a loss as to which lesion to biopsy since there were so many.  She told me, "We can't biospy a whole breast!"  I was sent for an MRI, and the radiologist herself called me the next morning and asked me if I was on my period or having hormonal issues (I was not), because the entire breasts were "lit up."  They scheduled ANOTHER biospy for me (it would have been my 4th one) and were going to just biospy the lesion closest to the surface, but the stereotactic machine acted up after I had been squashed every which way with the mammography machine they use.  The doctor told me to go home, that we would just wait three months and then see if there were any changes.  In the mean time, two of my older sisters who do not have "numerous," but only one, suspicious finding on mammography had lumpectomies which both came back precancerous. 

After three months, there was no change, but the radiologist still did not know what to do with my "complicated case" and asked me to go see my breast surgeon to see what she wanted to do.  Before I went to see my BS, yet again, I started realizing that I was done with this whole thing.  I was now 47 and just felt that I kept pushing my luck each six months (and now every 3 months) I was being checked.  My surgeon and I decided that BMX was my best course of action, especially because I had such anxiety during each test and waiting period.  I know the anxiety was born through watching my mother from the time I was 10 years old go through disfiguring surgery, radiation, and chemotherapy, only to lose her battle. 

I had the BMX with TE's November 9th and am awaiting my exhange surgery on March 20.  Since I did not have cancer, I was a good cancidate for nipple sparing BMX.  I believe being proactive, BEFORE I had full blown cancer, and being able to keep my nipples has made this a lot easier emotionally.  I really feel that it was just a matter of time for me.  The BS's nurse, after reading my pathology report and history, told me I was a ticking time bomb.  I have absolutely no regrets and actually like the way I look in my TE's.  I explain to my friends that the outsides are the same, actually a lot fuller and more youthful-looking, just the insides are different.

I felt I needed to make the decision of having BMX myself, which gave me far more options, rather than waiting until the choice was made for me with a DX of BC and perhaps chemo and rads.  I also took into consideration that I could hande this surgery a lot better at the age I am now rather than 10 or so years down the road.  Sorry this is so long, but I hope it might help just one person who is contemplating the surgery make up your mind. 

Best Wishes to All!

My situation is a bit different than yours however, when I found out I had to have a lumpectomy, I was consumed with fear.  I had always enjoyed good health and had never had surgery of any kind.  I was so anxiety ridden, I had to take something to calm me as I waited for my surgery date.  When the day came, I managed to coax my rigid body to the hospital with the help of my husband and my sister.  I was afraid beyond words.  I am here to tell you the entire process was more than bearable.  The staff at the hospital did a wonderful job keeping me busy and informed every step of the way.  I was given warm blankets to soothe my shaking body beforehand.  The actual surgery was fine.  I went gently to sleep and woke up feeling refreshed.  I was able to go home the same day, and I felt good right afterward.  I found going through radiation much more taxing energy-wise than the surgery was.  I know now that surgery does not have to be feared, which is a very good thing.

I should mention someone very close to me and quite a lot younger did have a situation similar to yours.  She watched it for a few years and about the time I was diagnosed, she was diagnosed with breast cancer as well as many areas of concern.  She decided to have a bilateral mastectomy and reconstruction.  She is finished with the entire process now, and has a beautiful reconstruction.  She is very glad to be done with it, and not living in fear any longer.  God bless.

Carol, the genetics stuff is really odd isn't it? Both my Dad's sister & mom had colon cancer, all my Dad's aunts on one side had breast cancer. I've had a rarer form of ovarian cancer & now have LCIS. I was tested for CHEK2, Lynch Syndrome & BRCA & am negative on all. Sure seems like something is going on in the family though, doesn't it?