Trying to work up the courage for surgery

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  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited February 2013

    Carol,

    HI, I had the brca, brca comprehensive and the BART all negative. My mom at 80 is still taking evista and my aunt in her 80's ended up having a hysterectomy before she got breast cancer. In regard to all the others I don't know, but since I am a tami failure I  do get worried.  I am still premeopausal and close to 52 it seems like I may be this way for awhile so atleast ask another > expert. The MO opinion that told me to have my ovaries out thought that there could be genetic involvement and this would further reduce my risk (ofcourse he is a male- not sure if they get it) so I am seeing another male expert. Oh well. My breast cancer surgeon indicated that the data does'nt support ovary removal ...

    regards,

    CR

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

    LCIS tends to be diffusely through both breasts.

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

    Chocolate, my onc is female, for what it's worth, and she's convinced that ovary removal is not needed for me.  My mother was diagnosed at age 38 and had mx/rads, and that was 46 years ago, and she is still with us.  She developed a lump under her armpit a year after her BC diagnosis, which led to a hysterectomy, and she was given 2 years at that point. But again, she's still here, after no additional treatments.  Go figure.  So many unknown variables on who gets what variant of BC, and whose treatments take care of it for good, or conversely leave the door open for a recurrence.  Uncertainty is BC's middle name, if you ask me.  I'm sorry you have to work through so many dimensions of decision making.  This can be so, so hard.

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

    Melissa, sometimes I wonder if my family history is the result of some environmental issue--my mother and her sibs and their mother lived in the same house for decades. How do we know their house was not built on some former toxic dump?  Genetic analysis does not explain our history, so why not an environmental explanation?  We'll never know.  Of course, that would not explain my LCIS.

    Lemon, my LCIS was discovered incidental to 3 simultaneous biopsies for 3 lesions that turned out to be benign (2 in one breast, 1 in the other). LCIS was found at all three sites.  I'm told that is not unusual.

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  • lemon68
    lemon68 Member Posts: 684
    edited February 2013

    Hi Carol,

    Thank you for sharing such good info regarding LE. I did end up having my seronoma drained. The breast specialist was very informative and gave me alot of tips and advice. My BS gave me NO advice and seemed disinterested in acknowledging that it even existed. I have been reading alot about it and it is truly from what I see ignored.

    Regarding my ILC, I am scared by making them give me the MRI we will find something in the left. If so isnt it better to know now? BS thought waiting until Oct after rads and healing was no big deal, guess to him its no big deal. My tumor was 2 mm so he feels it was a isolated situation, but with dcis and lcis right along side with it seems like its not so isolated. I know I am lucky compared to most that find it much later but cancer is cancer. Fear is fear. And the decisions we are forced to make are sure hell.

    Again your knowledge and your kindness to share it all is very helpful, bless you.

    Kim xo

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  • cdehls
    cdehls Member Posts: 19
    edited February 2013

    Thanks for sharing your experience Crescent 5, it really helps.  So glad you're a year out and on the other side!

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  • auntiems3
    auntiems3 Member Posts: 67
    edited February 2013

    Thanks longislandmom!

    cdehls-I don't have a surgery date yet.  Our appointment with the PS is in 2 weeks.  I am hoping to do this on my summer break from school so we are looking at a date in early May.  I will be sure to keep posting as dh and I go through this journey.

    Marie

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  • auntiems3
    auntiems3 Member Posts: 67
    edited February 2013

    cheryl e-  Thanks for sharing.  Your story echoes mine and your words ease my mind.  I am excited, yet nervous about the surgery ahead, but through the encouraging words of yourself and others who have been down this road, I feel confident I will make it.

    Marie

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  • cheryl_e
    cheryl_e Member Posts: 127
    edited February 2013

    Auntiem, you are welcome. My thoughts and prayers are with you. There is such a relief you will eventually feel, and you will do great with the attitude I see you have!

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  • cdehls
    cdehls Member Posts: 19
    edited February 2013

    Kokop, thinking of you as you recover from your surgery....Hope you're doing o.k.  Please post when you're ready.  cdehls

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  • SimplyAudrey
    SimplyAudrey Member Posts: 242
    edited February 2013

    I'll take it from Nike.  If you can close your eyes and see the outcome and like what you see......JUST DO IT!

    :)

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  • cdehls
    cdehls Member Posts: 19
    edited February 2013

    Yup, thanks, makes sense.  Just gotta bite the bullet.  Did you experience this angst prior? 

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  • grammietofour
    grammietofour Member Posts: 40
    edited February 2013

    Lemon68- I have LCIS on left. The right side was clear on mammogram but sure enough on the MRI which my BS wanted to do, there was a lesion. After biopsy, it was found to be LCIS on biopsy. This was the confirmation to me that BMX was the choice for me. They will check the nodes on that side obviously now which without the MRI would have been left as well as the LCIS in that breast! It is your right to insist on this. Good luck in your journey!

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  • Lynne5292
    Lynne5292 Member Posts: 2
    edited February 2013

    I, too, have been diagnosed with LCIS.  With the support of a wonderful family, including a sister who is a nurse at Loma Linda University Medical Center here in southern California, and a lot of friends, I have decided to go with the BMX.  Not willing to chance BC at my young age (48).  I am a very active person and eat well, so I want to continue living a healthy life and BC has absolute NO room in this picture.  I am scared, yes, but will survive.  WOOHOO

    Keep your attitude positive it helps.  A LOT!!!  Remember, you are NOT your breasts. 

    I hope this helped you a little.  Im praying you find your answer.  We are in this together.

    BTW Ive noticed my faith has a renewed energy, its a very peaceful feeling. Prayer works.

    Lynne

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  • auntiems3
    auntiems3 Member Posts: 67
    edited February 2013

    So...today we had our consult with the PS.  He said we were the fastest one he's ever been through.  Because of this board and all the input from the ladies here, dear husband and I were able to put together a plan by listening and doing our research. This forum has been a godsend to us.  Without the support and all the help from everyone here, I would not have been able to summon the courage to do this on my own.  I have learned so much from your advice and the experiences you are all willing to share.

    We started this journey last Summer when I decided I had had enough of "close surveillence" and biopsy scars.  We are now in the final countdown to PBMX.  The PS office is going to coordinate with the BS and we will have a date by week's end.  It is looking like mid May which means I will be able to recupe this summer and get back into the school schedule at the end of August.

    Surgery will be skin/nipple sparing with TE's.  An overnight stay (or 2) and fills every week (or 2) for 3 months with the final exchange sometime in August.  The worst part of this (which might be scarier than surgery itself) will be the (3 to 6 to sometimes 8 hour) round trips to Philadelphia on the Schuylkill (Surekill) Expressway.  I am horrible in traffic, but it will be worth it.  I believe I have the best team for the job.  And tomorrow I begin toning the chest muscles to gratefully accept those new puppies!Wink

    Thanks everyone!

    Marie

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  • Janetanned
    Janetanned Member Posts: 532
    edited February 2013

    Marie - I hear you about the 'Surekill' Expressway!!!!  I commuted into the Philly for a few years and was sure that I would eventually meet my Maker on this drive.  Now I use the calmer back roads and sometimes I-95.  Talk about risk-taking!  Anyway, it sounds like you will be going to HUP or Jeff?  If HUP is your destination and you are coming in from the west, you might want to look into the new HUP facility in the Valley Forge/Wayne area.  Obviously surgery would not be there, but you might be able to see your surgeon for follow-up visits there.  It just opened, so I don't know how many services will be offered out there.  I see some of my drs in Radnor (cyn, gp, gi) instead of downtown. I have used both HUP anf Jeff over the years and have found both to be excellent. 

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  • cheryl_e
    cheryl_e Member Posts: 127
    edited February 2013

    Auntiem, you are making a brave and right decision.  I had the same surgery you did, so if you need anything, let me know.  You can PM me also.  Just wanted to let you know that most doctors don't want you to work out your chest muscles before surgery.  Women with the loosest chest muscles do better with the surgery and fills as far as pain and how much fill they can take at a time.  I have always worked out and had such tight chest muscles that they could only put in the TEs, no saline, at the time of surgery.  I still had little boobies from the TEs, though.  I took a couple of big fills and then could only take 30 at a time the last two or three.  The nurse who filled me said I had the tightest chest muscles she had ever worked with, ha. 

    Cheryl :)

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  • cheri1859
    cheri1859 Member Posts: 32
    edited March 2013

    Hi wonderful ladies!

    You all have been so helpful to me over the last year (just by reading and not posting!)  After much research and many brutal biopsies and an excision I've decided to forgo the next excision and get a bilateral mastectomy.  I had a great meeting with my BS and she was on board and fully supportive with my decision.  She said that coupled with very dense breast tissue, LCIS/ADH/ALH/radial scars/adenomas/papillomas and all of the scarring that I have (I keliod in addition to the regular scarring so my breasts are looking pretty beat up) mammos are not picking everything up.  Ultra sounds haven't showed anything as of yet.  Of course my insurance company will be doing backflips at the cost savings this will bring them (I now need MRIs twice a year).  Anyway....I am very comfortable with my decision (and so is my hubby).  I will be meeting with a PS sometime in the near future.  I know I should be asking my BS this, but I'd like to ask you all first....I am scheduled to have another MRI this sunday but do you think I can forgo this knowing that all is going to be removed anyway? I'm just wondering why I should should waste my time and the facility's time since everything will be sent off to pathology anyway?

    Thanks for your help Kiss

    Cheri

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  • auntiems3
    auntiems3 Member Posts: 67
    edited March 2013

    Hi Janetanned and Cheryl e,

    Thank you both so much for the support...how do you do an online high five?   Janet, we will be going to Penn Medicine.  Both our docs (Sataloff and Bucky) are near or at Washington Square, so it will be downtown.  We are looking into places for dh to stay for my overnights.  Cheryl,  I promise not to workout to extreme, but I am fairly sedentary and the heaviest thing I lift is my granddaughter, who is almost 3. 

    This decision has lifted a great burden from my mind and I look forward to living fear-free.  I plan to keep in touch and may take you up on the PM offer.  I am sure I will have lots of questions that pop up from now to surgery date.

    This is for Cheri;  I am scheduled for my PBMX in May.  I am also due for my next MRI in April.  I asked my BS if I should skip it and she said no....keep the appointment to get the all clear right before surgery.     So, you may want to put it off until you get a surgery date and follow through at that point.  I understand the expense....I have an individual policy and I paid over $900 for my last MRI.  I don't understand the concept of paying premiums AND paying for the exams I should be covered for......sigh.

    Keep in touch and let us know how things are going with your decision.  ((Smile))

    Marie

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  • Janetanned
    Janetanned Member Posts: 532
    edited March 2013

    Marie - Another member of the boards, jsrose14  is using your team at Pennsylvania Hospital. Her surgery is scheduled for next week. 

    There are plenty of hotel choices near Pennsylvania Hospital for your husband if he is planning on staying in Philly. Its a great neighborhood, he should be comfortable.  Many years ago I was referred to Dr Sataloff when my sister was found to have BC.  I found her to be very warm and extremely competent.  I saw her for two years.  However, I dropped the ball, and failed to make the next follow-up appointment; a decision I've recently regretted. I think you are in very good hands!

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  • cheri1859
    cheri1859 Member Posts: 32
    edited March 2013

    Thank you for the sound advice Marie.  I didn't actually think about having the MRI closer to the surgery date.  The nurse in the breast center was amazingly helpful and made the appointment for me - she wanted me to get it done as soon as possible. I hadn't yet come to the decision to have them removed entirely. Hopefully my "very active" breasts will take a break between now and then.

    Cheri

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  • longislandmom
    longislandmom Member Posts: 248
    edited March 2013

    Just want to add that my "cancerversary" is next week.  my bad mamo was March 8 2012.  my biopsy and results was 3/12 and 3/13.  my BMX was last april 23rd.  It's incredible how fast this year has gone by.  but it DOES go by. and with it, comes health and energy and peace of mind.   I feel great.  no regrets.  and life goes on.  you begin to worry again about kids, work, and all the regular things of life.  cancer starts to move into the background. and hopefully, one day, out of my friggin life!  peace and health to you all. xxo

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  • loriio
    loriio Member Posts: 247
    edited March 2013

    Hi all. My cancerversary was March1st. I had my PBMX (which actually wound up being a BMX since Invasive was found) on June 26th. I had my nipple surgery yesterday. It's all doable and even though its the hardest thing I've ever been through, I have come out the other side stronger than I ever thought I could be. Best wishes to those just beginning this process.

    Cheryl e- I'm in Fort Worth too!

    Lori

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  • cheryl_e
    cheryl_e Member Posts: 127
    edited March 2013

    Lori, congrats on your new nips! Who was/is your doctor? Mine is Heistein at Southlake Harris. Dr. Mary Brian dis my BMX. My exchange is in 2 weeks. I see you had yours in Dec. How are you doing? Are you happy with the results? Looks like you sure made the right decision to go BMX. Did they find the ILC in the same breast as the DCIS or in the other?

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  • cheri1859
    cheri1859 Member Posts: 32
    edited March 2013

    Ladies....A week after meeting with my BS and after much thought, discussion and worry, I just made an appointment with a PS -  The elephant will be off my back the end of May (and I get to skip 2 excisions in the meantime - Laughing).  I will gladly say "good bye" to LCIS, ADH, dense tissue, radial scars, papilomas - to just mention a few of the abnormalities found in my pair...My ta-tas have served me well and I even enjoyed having them around but just like any unhealthy relationship, its just time to break up. 

    I am worried about the recovery but in reading all of your posts, I know I can get through this, too.  You're all an amazing bunch and very helpful! I wish you all the best and will keep you posted on how things go.

    hugs,

    Cheri

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  • loriio
    loriio Member Posts: 247
    edited March 2013

    Cheryl e- The ILC was found on the same side as the LCIS. Luckily it was small and had not spread. My PS is Etheridge and my BS is Anita Chow. I was very happy with the exchange. I felt so much more "normal". I am ready to finish with reconstruction and move on with my life. Good luck on your upcoming exchange.

    Lori

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  • cheryl_e
    cheryl_e Member Posts: 127
    edited March 2013

    Lori, thanks! I have heard some good things about Chow. So glad you are cancer-free! When I had pbmx, they found ALH in the side that never showed much concern and the side I had never had a biopsy in before.



    Cheri, I believe you are making the right decision. God bless and hugs. :)

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  • auntiems3
    auntiems3 Member Posts: 67
    edited March 2013

    Hi Cheri,

    I wanted to send you good thoughts and support hugs.  I will be joining you in May for my PBMX.  We met with the PS in Feb and our date is May 15th.  I figured instead of growing roses this summer, I will be busy growing new boobies! 

    I totally understand your feelings with regards to elephants, tatas and unhealthy relationships.  Once I made the decision to have this done, I never looked back.  It took me 5 years of what ifs to get me to this point, but without those, I wouldn't be able to say I am now 100% sure this is right for me.

    I need to have one more MRI for clearance and I am all set.

    Let me know when you have a firm date and if you haven't already read it, I will say read Arlene Flick's Blog on her journey through PBMX.  It has so much information and I found it extremely helpful and uplifting.  www.arleneflick.blogspot.com/   see Bye Bye Boobies. 

    Sincerely, Marie

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  • auntiems3
    auntiems3 Member Posts: 67
    edited March 2013

    Thanks Janet, I will look for her to see if she is up to answering some general questions. 

    Marie

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  • cheri1859
    cheri1859 Member Posts: 32
    edited March 2013

    Marie and Cheryl e....thanks for the hugs - right back attcha Wink

    I just had a conversation with my BS - she called me to report that she is going to do a sentinal node biopsy at the time of the BMX.  She's not happy with what she sees from the MRI "there's just way too much going on in both breasts".....WTF?! My confidence just bottomed out and I am no longer thinking that the BMX makes it a done deal for me

    My question to all of you that are planning on PMBX or have already had a PMBX, will you/did you have a sentinal node biopsy as well?? I'm fairly certain that this is not standard and that is what makes the whole thing a bit more terrifying!

    Thanks,

    Cheri

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