2011 Sisters

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  • lifelover
    lifelover Member Posts: 553
    edited March 2011

    Ducky and Rennasus, thank you for such positive advice.  I am up for it and am really feeling ready to tackle my cancer and get to the other side healthy and living life adventurously again!

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  • thecolorpink
    thecolorpink Member Posts: 2
    edited March 2011

    Hello Everyone - My Name is Beth and I'm 41 yrs old - Sorry for the reasons we are all here seeking support in one way or another, this is my first post!  I was diagnosed with IDC on 2/18/11, Grade 3 (size 2.3 cm), Stage II,  ER+ HER2- and have not had any surgery yet - waiting has become the worst part.  So far, I have had a lump ultrasound guided biopsy which produced the initial diagnosis, have had a pelvic-abdomen-chest CT Scan (neg), full body bone scan (neg) and a Breast MRI (1 suspicious spot in addition to lump i found initially).  Now yesterday I had an MRI guided biopsy on suspicious spot and an ultrasound guided axilla node biopsy both of which I am waiting results on.  I hope to have these by tomorrow morning so I can set up a plan with the Surgeon & get surgery scheduled and a treatment plan in place.  This is the part i am having difficulties with now as to what "type" of surgery. 

    If the latest biopsy comes back cancer positive I am 90% leaning towards removing my left breast.  However, if not then just the lumpectomy.  Another couple factors playing through my head and my husband's, I have 3 maternal aunts (2 have passed from BC & 1 is still alive & well) and maternal Grandmother who died at 91 but not of BC - all but 1 (in 1968) diagnosed over the age of 60.  In addition, my oncologist sent out blood work for BRC1 & 2 gene testing and gave his rendition of "if my wife or daughter and based on family history and if my gene test comes back positive" he suggests full bilateral masectomy and remove my ovaries in the near future.  WOW!  My surgeon however feels differently and says that it is major major surgery (could cause set backs in itself) and there are still no guarantees in either direction.  I have young children (4 & 7) & I want to grow old with them - who plays God at this point and I want to have as few regrets as possible, right?  I have a cousin (same maternal side) who had the gene testing, came back negative and got early stage DCIS 2 yrs later. 

     Although I am not pretensious or vain (typically), removing both my breasts will remove who I am on the outside but 'could' give me a better chance to live to a ripe old age.  Surgery is what scares me most at this point as that poses risks too.  I am worried about the recovery of having more than a lumpectomy too.  Heck I am just plain scared of it all!  I wish my head would quit spinning and grab hold.  OMG for sure and literally right! :)

     Thanks for listening & hang in there - we are all going to make it.  My radio-oncologist gave me a 4-letter word to engrain in my head CURE

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  • supersally
    supersally Member Posts: 351
    edited March 2011

    colorpink,

    We are in very similar situations.  I'm 40,  found a lump, was diagnosed with IDC, 1.7 cm lump, ER/PR+, HER2- on 12/15/10.  My maternal grandmother, aunt on maternal side, and first cousin on maternal side (not the daughter of the aunt) all had BC.  Not sure what Grandma had, but my cousin's and aunt's and mine were all different types of cancer.  They were all dx'd after menopause.  I opted for bilateral mastectomy, nipple sparing with immediate recon, and they found 1/7 lymph nodes positive with 3 mm met.  I am negative for BRCA and Oncotype score is 17, so border line if I should do chemo. 

    By doing mastectomy, I don't have to do radiation.  I opted to do both for peace of mind and for a better cosmetic result.  A mitigating factor for me was that I had cervical cancer 2 years ago and know what it's like to live with that daily anxiety that it might recur.  Only you can make the decision and you will find people on both sides of that fence, both here and outside.  However, a lot of people I know that have only done one side wish they'd done both at the same time and gotten it over with.  Although difficult, it is do-able.  YOu are young and if in otherwise good health, you will bounce back quickly from any surgery most likely.  I'm now headed for chemo next week as an additional weapon against it.  Good luck with your decision, you will know what's right in your heart if not your head.

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  • TinaT
    TinaT Member Posts: 2,300
    edited March 2011

    thecolorpink / Beth:  Welcome to the roller coaster. Laughing  Every person has a different story, but there's definitely a common thread between us all.  It's very surrealistic. 

    I spent last December having ultrasound and MRI-guided biopsies after 5 suspicious areas showed up on my MRI.  Because of the way it all timed out I spent several weeks thinking that I only had one cancer (lobular).  I did my research and learned that lobular is often multi-focal, but I was OK with that and had my head all wrapped around a lumpectomy and vigilant screening for the rest of my life.  A second cancer was subsequently found in the same breast and the lumpectomy option was yanked out from under me.  For me, there was no question then that I wanted a bilateral even though I could have opted for a single.  For some reason having one "normal" and one reconstructed breast seemed harder than having two reconstructed breasts that would more likely look the same.  Ultimately, I had more foci of DCIS and lobular neoplasia in that breast that hadn't shown on the MRI.  So....I knew I made the right decision for me.

    The great thing about cancer treatment today is that there are so many options.  The downside to that is coming to a decision.  I found that the more reading I did the easier my decisions were...the stuff that wasn't right for me just fell to the wayside.

    One thing that made a HUGE difference for me was my local surgeon's insistence on sending me to San Francisco to check out nipple-sparing mastectomy because she thought I would be a perfect candidate.  IF you decide on mastectomy please at least go online and check it out.  Not everyone is a candidate (size and location of tumor, etc make a difference).  My bilateral mastectomies (done by breast surgeon) and the start of reconstruction (done by plastic surgeon) were done back to back.  I woke up from surgery with my skin and my nipples, and looking like a slightly beaten up version of myself.  My breast surgeon did the incisions under the breast and my plastic surgeon partially filled the tissue expanders and it really wasn't shocking at all to see myself in the mirror right after surgery.

    Good luck....give yourself a bit of time to absorb what you can.  If your health system has a breast cancer navigator I highly recommend contacting them.  He/she will be a wealth of information and help to act as your advocate when things feel overwhelming.

    Surgery:  NSBMX with TE 2/16/11

    Diagnosis:  Left ILC, 8mm, Grade 1, Stage 1b, SBR Score 5/9, 0/1 nodes, ER+/PR+, HER2 -

    Second area of lobular neoplasia and multiple foci ADH in left breast

    Previous history ADH in right breast

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  • TinaT
    TinaT Member Posts: 2,300
    edited March 2011

    Beth:  I should add that there are many options within the realm of nipple-sparing mastectomy.  I chose implant reconstruction, but there are "flap" reconstructions available as well where they use your tissue to build the breast.  That was one of the things that I discarded right off, just wasn't an appealing option to me.

    Hang in there!

    Surgery:  NSBMX with TE 2/16/11

    Diagnosis:  Left ILC, 8mm, Grade 1, Stage 1b, SBR Score 5/9, 0/1 nodes, ER+/PR+, HER2 -

    Second area of lobular neoplasia and multiple foci ADH in left breast

    Previous history ADH in right breast

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited March 2011

    Beth, sorry to see you join our club but happy you found us! As everyone above me has said, the waiting and the unknown are THE hardest parts of this ordeal. Once you have the facts and can make educated decisions and form a treatment plan, THEN you can move forward and reach the other side of the hill. We are all in various stages of the hill climb. 

    Deciding on a lumpectomy or mastectomy issue is a very personal, multi-layered decision. 

    1) First you need to know exactly what you are dealing with from a cancer perspective. That means waiting for all those snarky tests to come back.

    2) You need to know yourself and what you are willing to endure. Sometimes you know this immediately; sometimes it takes time and introspection after all the facts are in. From your post, it sounds like you already know yourself well: you have said that your breasts are an important part of you and that your outward identity is tied to them. This is an important thing to realize about yourself.

    3) The third piece here is getting the opinions of your medical team, including 2nd opinions if you need them. This includes your surgeon, your plastic surgeon and your oncologist.

    Stir all this %$@# into a pot and then wait for the water (and your blood pressure!) to boil. You *will* know what to do after it has all simmered for a while. Remember, you do *not* need to make any decisions immediately. Both of my surgeons told me, "Your cancer has been growing inside you for years. Waiting another month is not going to make any difference in treatment." 

    I chose a bilateral for the same reasons as TinaT above. Even tho my breast tissue was removed and my nipples were gone too (my cancer was right under my nipple so I chose to get rid of both), the way I wrapped my head around losing my breasts was realizing that my skin was still there...! *My* skin was still on the outside; who cares what's on the inside if it buys me peace of mind? Somehow, realizing that is what got me over the hump of being completely OK with my BMX decision. And like TinaT, I awoke from surgery with two breast mounds, which was pretty cool. 

    Anyway, hope some of that helps. Keep breathing! 

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  • Kymn
    Kymn Member Posts: 999
    edited March 2011

    Welcom Colour Pink I too am sorry you have to be here but this is the place to be to find some comfort during this difficult time in our lives. We really do get what it is you are going through and our loved ones try but unless youve been there......well you know. I so understand the waiting part is absoutly the worst I was diagnosed Jan 10 and am now just starting chemo one week from today. I had two lumpectomies, I wasnt even offered the choice of a masectomy and of course I didnt know better at the time and was totally uneducated in BC. I dont know sometimes I think I should have had a double mas knowing now that I am triple neg,  But it was caught fairly early and know it responds well to chemo so fingers crossed I only have to fight this beast once.

    Try and just stay calm during this horrible waiting time, I know its easier said than done but before you know it its time for treatment now it seems like the days are cruising by to me ironic really.

    good luck and sending you a hug

    Kymn

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  • carol6026
    carol6026 Member Posts: 45
    edited March 2011

    Good Evening ladies, I had been posting on other threads, but thought I would stop by hear. I was scheduled for a double mastectomy on march 25th, but has been cancelled and moved to april 9th. I was finally starting to except it and know I feel like I am having a set back. Waiting again.

     colorpink, your family history sounds alot like mine, good luck to you and hoping your tests come back great.

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  • TinaT
    TinaT Member Posts: 2,300
    edited March 2011

    carol6026:  During my biopsies and diagnosis things seemed to be happening so fast.  Once I had my head wrapped around my surgery plan everything seemed to be going terribly slowly.  The waiting is difficult.  But, by the time my surgery date arrived I decided that it had been good to have some time to mentally come to grips with things a bit better.  Hang in there!!!

    Surgery:  NSBMX with TE 2/16/11; Diagnosis:  Left ILC, 8mm, Grade 1, Stage 1b, SBR Score 5/9, 0/1 nodes, ER+/PR+, HER2 -; Second area of lobular neoplasia and multiple foci ADH in left breast; Previous history ADH in right breast

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  • carol6026
    carol6026 Member Posts: 45
    edited March 2011

    Tina, ty for your response. That is exactly how I am feeling right now. It seemed at first everything was going so fast, but now I feel like I am in slow motion. The one thing I do like, is that if everything goes okay, I can come home the same day. I thought that the time to except having bc was good mentally, but the longer I wait the more my mind starts to wander and I find myself wanting to back out. I know that I cannot, but this is how I am feeling.

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  • TinaT
    TinaT Member Posts: 2,300
    edited March 2011

    carol6026:  I had a rather long wait because I opted to go for nipple-sparing surgery 3 hours away and had to coordinate appointments with the BS and PS.  It took weeks to find a day that they both had openings for consult appointments.  Then, the BS was to be on vacation.  It was difficult.  I had plenty of things to keep me occupied while I waited, but I couldn't seem to get much accomplished.  My husband and I had a daily ritual.  I would say, "I don't want to do this" and he would give me a big hug and say, "But you have to" and we would both laugh.  Weird.

    Before you know it you'll be home from surgery.  You can do this!!!

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited March 2011

    Yes, the wait is the worst! For me it was 2 months from diagnosis to surgery. (The holidays set me back with the doc appts. I was biting at the bit!)

    Exercise as much as you can right now... it will give you good mental images to draw from when you are stuck in bed after surgery. ;-)

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  • Cat123
    Cat123 Member Posts: 296
    edited March 2011

    The waiting is the awful!  I had a mastectomy on Nov 4th...left breast with immediate reconstruction.  Everything went well.  Once you are going through the treatment it is not as bad as you imagine....the decisions are worse.  It's all very doable.

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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited March 2011

    Hi Ladies...............Duckyb1 here...............Yesterday I got rid of the beast...........after 1 month or waiting, worrying, crying, swearing, and coming to this site everyday for suport, it is over...........I had my lumpectomy, sentinel node biopsy, and I am home today feeling better then ever..........yes sore (a little), but I expected that...........My wonderful surgeon said things are looking good........2cm tumor that when he palpated it after removal appeared to have good areas of margin............sentinel node looked good, but he said I took a small piece of the pad to be certain.  Results will be in tomorrow, and a visit to him on Thursday for the final news after pathology, but right now it is looking good..............Now on to the next step..........1 month ago I thought I was the unluckiest person in the world....................but  now I know how fortunate I am to have met a wonderful group of women who have gotten me to this point with theier stories and encouragement.........to you all I say "thank you".............for a team of Drs. who at all times made me feel confident, and assured that it would be fine.............but more then anything else to my wonderful 6 children, 18 grandchildren and my new twin baby great-grandhildren (1 week old) who have given me  26 more reasons to live................On April 24th I will celebrate my 76th birthday and I can honestly say "life is good"......................God is good............and most of all........."I HAD CANCER...........IT DID NOT HAVE ME..............hugs to you all,.

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  • TinaT
    TinaT Member Posts: 2,300
    edited March 2011

    duckyb1:  Congratulations on getting through the surgery.  I hope all the reports are the best they can be. 

    Happy Healing!

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  • djls
    djls Member Posts: 65
    edited March 2011

    Hello everyone.  Adding myself to the list.  I was diagnosed with IDC last Wednesday and will be starting chemo on Monday.  The oncologist strongly believes it is limited to the breast with no lymph node involvement and no chest wall infiltration (it's right up against the chest wall.)  The PET scan will tell us for sure (at least I think it will). 

    I'm having my echocardiogram, PET scan and my port put in the next three days. 

    After chemo, I will have a mastectomy and then radiation.

    I'm ready to get this started and begin moving forward.

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  • TinaT
    TinaT Member Posts: 2,300
    edited March 2011

    djls:  Nice to "meet" you.  Sounds like you've got a plan and are forging right ahead.  Keep us posted.  Good wishes and best of luck!!!!!!!!!!!

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  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited March 2011

    Greetings DJ - You sound ready! 

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  • Kymn
    Kymn Member Posts: 999
    edited March 2011

    Hi ladies, welcome DJ glad to meet you but sorry your here.

    Fuzzy you look beautiful I have not seen that pic of you yet. How have you been doing? I am starting on thursday.....yikes.... hope all is well.

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  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited March 2011

    Hey Kymn!!  I've been thinking about you!  Thank you!!  You are so kind. I just "razor shaved" the whole thing this morning ... it feels so much better.  There were little tiny prickly ones that were really bothering me so ... I have the shiniest head in the neighborhood!! 

    I'm having a pretty good week - I screwed up my medicines last treatment and ended up at the hospital!!  That was aweful!  I hope and pray that everything goes well for you!!  Please keep me in the loop ok?  My third one is on Friday ... one step at a time, right?

    HUGS!!

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  • christine47
    christine47 Member Posts: 1,454
    edited March 2011

    Hey 2011 Girls,

    I have been posting primarily on the Jan site, but noticed this one too.  When I am not working (just working part-time), I so enjoy getting on these boards.  When I am having a bad day, always get encouragement and hope here. 

    I am 47 and was diagnosed in Nov, my stats are below.  I am recieving TAC x6, I have had 3 treatments and getting ready for #4 on Friday.  I have a great husband and two boys, 12 and 14.  I was quite discourged after my last treatment, but feeling better in last two weeks.  My onc is great and said 3rd seems to be worse, and usually rest are better.  I was ready to throw in the towel after last treatment.  I had BMX with expanders in Dec and this process has gone well for the most part.  I had the TEs but not as much as I had being bald. Good news is neither will be forever.

    Fuzzy- you look great without hair.

    Kymn-good luck on friday, maybe they will serve some green beer.

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  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited March 2011

    Howdy Christine!!  Thank you so much ... you all really know how to make my days!

    Wow!  You're on number four Friday?  Congrat's on the progress (I'm totally dredding number three ... ).  Have you seen the asparagus thread?  If not, I'll bet you'd get a kick out of it ...

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  • christine47
    christine47 Member Posts: 1,454
    edited March 2011

    Fuzzy Lemon, Yes, 4 of 6 on friday, feels like forever.  I will be done on April 29th, I dream of the day!  Whats your posion?  Realized that it was heartless to post #3 is the worst, if you are eating your asparagus that may not be the case!  I personally do not like asparagus.  I have checked out parts of this tread, need to go back for a laugh this week.

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  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited March 2011

    Oh wait til you see Garlic Butt!!  Whoa ... that's some kind of serious!

    Uh ... I know I'm on the Red Devil something something ... it's aweful.  But I totally didn't think that was heartless!  I like to know what's coming ... and I have heard that three is a doozie. Blech blech blech!  I'm happy to hear you got through it!! 

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  • christine47
    christine47 Member Posts: 1,454
    edited March 2011

    Ok girls,

    Gotta tell you all something funny that just happened, then get off the computer and get some sleep before my PET scan early tomorrow am.  My husband has noticed me on my laptop alot lately (I usually do not get on the computer unless I am working), he come in a few minutes ago and asks what I am looking at.  I respond "nothing, just checking emails" (not wanting to explain I am at a BC site).  He asks me if I am meeting men online or something.  HA, HA, married 20 years, bald, coconut boobs,steriod induced psycosis and surfing for a new man!

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited March 2011

    Christine47... OMG that IS really funny! Thank you for the laugh! I think my DH had wondered that too, because he was always wandering in while I was on the computer. I told him about this site and the great ladies and info, and now he thinks it's great when he hears me typing away!

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  • lilylady
    lilylady Member Posts: 1,079
    edited March 2011

    I never really had much use for a computer at home-but I got 1 for Christmas last year. I was mad because all i really wanted was a little TV for my bedroom. What a twist of fate!! Since I was diagnosed Feb 18 I can't get off the stupid thing. I know I should be doing all the things in the house I will be too tired to do later but way rather spend time hanging out here.

    First I went to all the sites to get educated, checked out You tube to see how they install a port and do chemo, then found this place. Way more practical info here all in 1 place than trying to pick stuff off the web. My first onc visit today he asked me to explain to him what  my understanding of my disease was and how it is treated. When I got done talking he rolled his chair back and said "Where the heck have you been studying?" Told him I had some real smart sisters.

     Thank God for this site and you people!

    .

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  • Silia
    Silia Member Posts: 330
    edited March 2011

    duckyb1 - SO happy to hear your surgery is behind you - yea!!!

     djls - I don't think you're on the March Chemo Lounge.  We would love to have you.  Sounds like you and I have some similarities re: IDC and treatment being chemo then surgery.  Check out the thread -  it's an excellent assortment of women.

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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited March 2011

    Hi Silia, yea its over..  I got the pathology report, and of course forgot 1/2 of what the BS told me on the phone..........Had my daughter call today.  I asked the secretary to have the BS Asst. call me back with it again, and to give it to my daughter.....This is what I got.......No node involvement. However he did take out 10 nodes cause he said that the sentinel node did not come up very bright color, so he took more......When the pathology on the nodes came back, and they did identify the sentinel node, none of them showed any cancer.............The tumor which on the ultrasound appeared to be 2cm to 2.5. cm. was actually a 1.1cm tumor..........The BS was very pleased with that result............He was able to get 2mm clear margins most of the way around the tumor.   There was a small area where he got 1.25, and 1.5 which he was happy with........After he consulted with the Rad.Onc, she told him she was happy with the margins....I also called my GYN, after he read the path., and he said "you just got great news".....I am happy, and my children were beside themselves with joy.......I will have radiation as soon as the healing is over, and then just think positive.  I feel fortunate.....God is good.

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited March 2011

    Yeah Duckyb1!!!

    That is the news we wish for all our sisters on these boards. Sounds like the luck of the Irish is with you! Now go celebrate! 

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