Trying to work up the courage for surgery

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cdehls
cdehls Member Posts: 19

Is anyone else trying to work up the courage to go for surgery?  I was diagnosed with lcis June, 2012, and have started tamoxifen, but my overwhelming feeling is that the most succesful route is surgery.  I just can't seem to get there.  I had a consult with the plastic surgeon and tested negative for BRAC.  My mother died from bc at 62, and a first cousin died in her early 50's (I recently turned 52) so I've always felt like a walking time bomb.  I'd like to connect with other women sharing similar feelings.

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  • 6timesurvivor
    6timesurvivor Member Posts: 3
    edited January 2013

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

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    I was diagnosed over 9.5 years ago and also have family history (mom had ILC).   I do high risk surveillance of alternating mammos and MRIs every 6 months, breast exams on the opposite 6 months, took tamoxifen for 5 years, and now have been taking evista for about 4 years. Fortunately, I haven't needed any further biopsies or lumpectomies in all these years, but I certainly would reconsider PBMs if anything more serious were found. The first year after diagnosis, I was kinda consumed by it all, but  now I don't dwell on it, I don't really even think about it much except for the day of my MRI or mammo. There's definitely pros and cons to both surgery/reconstruction and with surviellance/preventative meds. I think both choices take courage.

    anne

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited January 2013

    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.

  • cdehls
    cdehls Member Posts: 19
    edited January 2013

    No tumor, lcis dx after microcalcifications found after biopsy...just seems that surgery is the best route, however, appreciate hearing from others who have chosen other routes...still in decision making process

  • cdehls
    cdehls Member Posts: 19
    edited January 2013

    Thanks for sharing...Wish I could stop thinking so much. Glad to hear things have gone well for you so far.

  • cdehls
    cdehls Member Posts: 19
    edited January 2013

    Good point...And glad things have worked well for you too...

  • cheri1859
    cheri1859 Member Posts: 32
    edited January 2013

    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.  Laughing

  • Crescent5
    Crescent5 Member Posts: 442
    edited January 2013

    I wouldn't avocate anything for anyone but myself, but when you typed this:

    my overwhelming feeling is that the most succesful route is surgery

    ... you had your answer as far as what is probably right for you. It took me a year to make the call to schedule my surgery. I had to be sure. Deep down I knew what I had to do, but talk about terrified!

    What helped me was to keep a list of reasons why I was doing the surgery. I also had a list of encouraging thoughts for myself. I knew as the surgery date grew closer, I would look for any excuse to back out. My lists helped keep me focused. I will honestly tell you that the lead up to the surgery sucked. It was so much worse than the surgery itself. My PBM was a year ago, and I still cant believe I had the guts to do it. So glad I did though! It probably saved my life as I had hidden invasive that mammos & MRIs did not pick up (it's rare).

    The new girls are prettier than the old, but I really would have preferred the originals. But I never have to worry about the other shoe dropping. I don't have to listen to my heart pounding while waiting for test results twice a year. I remind myself that my cancer probably wouldn't have been found for a few more years, and by that point, I'd be in some real trouble. This is as close as I can get to those lovely carefree days before I got the call to come back to the mammographer.

    Trust your instincts.

  • kokoo
    kokoo Member Posts: 17
    edited January 2013

    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.Smile

  • longislandmom
    longislandmom Member Posts: 248
    edited February 2013

    i was dx with DCIS and LCIS in left breast last march.  Docs recommended LX plus Rads, but said that "peace of mind" was a valid reason to go for MX instead.  I stressed like crazy over the decision, but in the end decided that i needed to close the cancer chapter and move on with my life...and a BMX felt like the best way of doing that.  Agree with someone else on this thread who said that the lead-up to the surgery was almost worse than the surgery.  The surgery isn't fun-- but it's totally manageable.  Pain is controlled and recovery is relatively quick.   The worst post-surgical piece for me was the limited arm mobility-- which came back with time and PT.  I will admit that i miss having sensation in my breasts-- but that's the worst of it.  I can live with that in exchange for a 99% chance of no recurrance.  It's a new normal you adapt to.   BTW.. they found atypia in my "normal" breast, so i feel like a dodged a future bullet.  again-- there is no "right answer"  just "your answer."  but don't let fear of surgery hold you back if that's the issue...it's really not that bad all things being equal.  good luck!!!!

  • cdehls
    cdehls Member Posts: 19
    edited February 2013

    Thank you for sharing that, your post was very powerful.   I am so close to being there, just need to get there.  All your thoughts resounded with me...  Congrats on making your decision, and being a year out. 

  • cdehls
    cdehls Member Posts: 19
    edited February 2013

    Terrific, you've crossed that hurdle...Best of luck to you and a great decision.  Please keep us posted as you cross the finish line!!

  • lemon68
    lemon68 Member Posts: 684
    edited February 2013

    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.

  • Lynne5292
    Lynne5292 Member Posts: 2
    edited February 2013

    I, too, have just recd a diagnosis of LCIS.  I am so completely confused on what to do.  My family and my friends are wonderful and keep saying they support whatever I decide.  My husband, has been a quiet bee since this "journey" began back in October.  He is wonderful, but will not admit that, he too, is scared.  My gut tells me to go with the double mastectomy.  Currently, I am playing phone tag with the genetics counselor, so I have not been tested for the BC gene yet.  My plans will be to go forward with this, as I have 2 daughters in college who need to know if they, also, will need to be tested.  Also, my grandmother had breast cancer when she was about my age (46) her sister also had breast cancer, but I am not clear on the age or what "type" either of them had (both deceased).  Please give me some direction.  Its so completely surreal for me right now. My thinking is "boy what a gift I have been given to know before something happens". Still unnerving. What have the rest of you decided?

  • auntiems3
    auntiems3 Member Posts: 67
    edited February 2013

    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

  • longislandmom
    longislandmom Member Posts: 248
    edited February 2013

    Cdehls -- if ever you have questions or want to chat about it, please feel free to PM me.

    Good luck to you.

    Marie, sounds like you made the right decision for you.  Good luck with your surgery.

  • cdehls
    cdehls Member Posts: 19
    edited February 2013

    Sounds like a very well thought out, rationale decision...Wish you/we didn't have to make it, but it is what it is, and we have to do whatever we can to avoid the other shoe dropping..Good luck with your surgery.  When is it scheduled for?

  • cdehls
    cdehls Member Posts: 19
    edited February 2013

    Yes, that's what is so unsettling, it's all such a gamble.  And my bs said that in her experience, the women who have had the surgery have lived through the deaths of their moms/grandmothers/sisters, which is the case with me, but I want to do it for the right reasons, not just the emotional ones.  Very difficult at best...

  • Pointvalue
    Pointvalue Member Posts: 146
    edited February 2013

    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

  • carol57
    carol57 Member Posts: 3,567
    edited February 2013

    cdehls, just a thought, but emotional reasons can be the 'right' reasons. I think we can all make a strong intellectual case for surgery, and an equally strong intellectual case for no surgery, but I suspect it really is the emotional response that nudges us in one direction or the other.  That's why I think Elise's advice to follow your heart is so important. 

  • cheryl_e
    cheryl_e Member Posts: 127
    edited February 2013

    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!

  • cheryl_e
    cheryl_e Member Posts: 127
    edited February 2013

    Kokoo, I am praying for your surgery on the 8th.  You will do great, and although it won't be easy, it is very manageable.  They will take good care of you.  I am a pretty anxious person, and I can tell you now that I have been through it, there is nothing to fear. :)

  • cdehls
    cdehls Member Posts: 19
    edited February 2013

    Yes, good luck with your surgery...Please post after and let us know how you're doing!! 

  • cdehls
    cdehls Member Posts: 19
    edited February 2013

    That was inspirational, so good to hear!!

  • cdehls
    cdehls Member Posts: 19
    edited February 2013

    By the way, that's exactly the way I felt, what a gift (early detection), however, there is no easy answer, and personal decision at the end of the day...I would have loved for the Dr. to say that is what she recommended, but she said it was a personal decision.  A very difficult one at best.  But I do believe that not worrying about this constatantly would be a huge relief.

  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited February 2013

    cdehis

    I was first dx with LCIS and this went on for months. I was planning on having a bilateral based on my mom having serious breast cancer and my aunt and others. So I sent my records to the out of state surgeon who does one step ns immediate reconstruction and he reviewed my records and said I needed another biopsy.  He was not sure I was in the clear. OK, so I have this excisional biopsy and a week later get the diagnosis of LCIS and that is it.  The local bc surgeon recommends do nothing, have surgery or take tami and I figure I am all done.. Well two days later I call to get the report to send out of state and boom! Its now ILC 3.8mm and definitely a 1mm margin. (Remember 3.8 mm is like a 20 point diamond nice but not big. Anyway,  my husband does agree with me (finally) and I have the bilateral  surgery out of state. However, this is now part of my regular life- its two years now and I am still in the process of deciding - do I need my ovaries out ( appointment in big city hospital 2/28)? If this LCIS is going to torment you then move forward if you can do the 6 month routine and you are ok with it then go that direction.  My biggest factor was that my Mom had a really bad bc and had chemo and still takes evista today (almost 18 years now) so yes she is here. But I saw here have shingles, bells palsy and now severe arthritis everywhere from all the stuff she has had to endure. I love her and she has been through so much and I am hoping not to follow her pattern. Fortunately, I did not need chemo... Again this is just one person's opinion.  Good luck in your decision.

    CR

  • GiGiL
    GiGiL Member Posts: 928
    edited February 2013

    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.

  • carol57
    carol57 Member Posts: 3,567
    edited February 2013

    Chocolaterocks, my LCIS was just that, with zero findings of anything worse on pathology of the breast tissue after my prophy bmx. Just the other day, I had a conversation with my onc about the ovary question. Did you have BRCA testing?  I did, and I'm negative, but with a very long and wide family history of BC (mom, her sibs, their mother, their grandmother).  The onc said that as BRCA negative, I am not at elevated risk of ovarian cancer, despite the family BC history.  

    We talked about what could be 'undiscovered' genetic explanations for my family story, with me wondering out loud if whatever caused the family BC might yet be brewing ovarian risk, but the onc felt certain that my risks approximate those of the general population. Not a soul in the family has had ovarian cancer, so I took the onc's words with a great deal of reassurance.  If anyone else has been told otherwise, I'd love to hear about it here.  So far, I am much encouraged on the ovarian cancer risk question.

    As for the bmx, it was not so bad, even with immediate diep reconstruction, and I am very, very happy that I took that step to reduce my BC risk enormously and let me look forward in life, instead of always looking over my shoulder waiting for my turn with the family disease.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2013

    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?

  • lemon68
    lemon68 Member Posts: 684
    edited February 2013

    Hi

    I am just wondering how many of you had LCIS or ILC in both breasts? I asked today for a MRI as I am so filled with anxiety that it might be in the left also. My BS was against it but is letting me do it. Did anyone do this? If you had a BMX did you find out later that the other breast also had anything? I just feel like it would ease some anxiety to hear the left was clean. Also curious to what else may be lurking in the right. Doc is afraid of unnecessary biopsys and anxiety over what may or may not be there. Also some concern of delaying my rads if there is something. Do you think I am making a mistake? Is it better to not know? This ILC is sneaky and to wait he said till Oct. to check if there is something there puts me in the same spot I am in now but with the other one. Dont care to go through it this time next year or put my hub and kids though it again next year, I would rather know now. Any advice or experiences you all had is greatly appreciated.

    Will have the BRCA test done next Friday also, if positive this will change everything. No history, adopted.

    Thanks to all of you.

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