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localgirl
localgirl Member Posts: 39
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi all-

New here unfortunately.  Just heard from my Dr on Friday that I have stage 0 DCIS, low-med nuclear grade in right breast.  Monday morning I had a blood test to see about the BRCA mutation and that will take 2 weeks to come back.  I'm 37, married with 2 young kids. Also just to add insult to injury, my mom was diagnosed the monday after I was with IBC and we are awaiting more tests on her end (she lives in another state so we aren't too near each other unforutnately). 

Right now I'm mostly just frustrated.  Since I live 15min away, I have chosen to go to MD Anderson.  I called for an appointment about 2 hours after I got my Dx and they finally called back on Tuesday.  Said I needed to fax in paperwork/history before they would schedule me.  Sent the info to my doctor that day...nothing...reminded them again this morning.  It's going to take 3-4 weeks to get in there once they actually schedule me, and they won't do that until they have everything from my doctor!  I know I have read that there is no rush, but it's hard for that to sink in when I read about women getting seen within a few days.

Lastly I have a question - I found my lump by myself doing a self-exam a week or 2 ago.  It felt like a hard BB gun pellet - really tiny but solid.  They did a core biopsy last week (which led to the Dx) but not I don't feel it anymore.  Is it possible he removed a good chunk of it with the biopsy?  Is there any way he may have disturbed it while doing biopsy so that it becomes invasive?  Silly question maybe, not sure.

Anyway, so glad I found this site.  Can you tell I'm anxious to get moving?  Of course I think that depending on the blood test results I'm going to have a fairly decent road ahead, or a really difficult one.  Wish me luck!

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited October 2010

    Bless you!.. I am a DCIS gal too. It has been a yr for me. I was 38 and have two small kids too. My son was one and the other four at the time. I am in Houston also. I did not go to MD Anderson but thought about it. I used Methodist for my surgeon and plastic surgeon. I loved them both and feel I got excellant care and results. PM me if I can help in any way. So sorry about your mom. My mom had IDC but many yrs ago. Hugs

    xxoo

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  • Fingersntoes
    Fingersntoes Member Posts: 18
    edited October 2010

    Hi Localgirl

    I cant believe you have to wait that long.  When I got my diagnosis, my primary dr made the appt for me, which Ive heard can speed up the process.  They also faxed surgeon all the neccessary paperwork.  Did the dr who diagnosed you offer to do any of that for you?  I've had my diagnosis for 3 weeks now and have been able to see the surgeon twice, a radiation onc, and plastic surgeon, all since my diagnosis.  So sorry you have to wait that long, bummer.  In the meantime, get more referrals because you will want a 2nd opinion anyway.  Maybe someone else can see you sooner and still keep the appt in 3 weeks.

    Not sure if I can answer your question about feeling the lump (I couldnt feel mine) It's possible they took some of it out with biopsy. I saw the amount they took out of me and it seems like my boob should be alot smaller now.  As for the other question, my husband happened to ask that same question to my dr yesterday and he assured us that no, it doesnt disturb anything.  I hope hes right.

    Good luck to you and to your mom, at least you can talk on the phone to support each other and share stories and advice

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  • Fingersntoes
    Fingersntoes Member Posts: 18
    edited October 2010

    Sunnyhou

    You mentioned a plastic surgeon in your post, does that mean you had a mast? Would you mind telling me some specifics? I'm still in the mast vs lump/rad stage.

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited October 2010

    It is because it is MD Anderson. I called to go there too and they wanted me to repeat all my tests an wait six weeks to see a Dr. I went ahead and stayed where I was. My Dr would not help me get in sooner since it was DCIS and could wait. They said that DCIS is not an emergency and there are ladies with more serious diagnosis needing to get in. Also, I think most of us with DCIS did not feel a lump but rather it was found incidentally on a mammogram. I do however know that DCIS can present as a lump too. Also, I think you asked about the biopsy making it become invasive. This cannot happen with DCIS. DCIS does not yet have the biology to do that so while it is still pure DCIS it cannot survive outside of the Duct. I would read Post by BEESIE she is the resident expert on DCIS. I will try to bump some of her great posts up for you!

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  • localgirl
    localgirl Member Posts: 39
    edited October 2010

    Wow you guys are awesome for replying so quickly - THANK YOU!

    Yes I've considered another place, but I have a good friend from college who is a Dr at MDA and she really suggested I go there.  Think I may call my doctor and see if she can recommend someone else.  I figured that they might feel that DCIS is not as urgent, but try telling that to someone who was just Dx with it! 

    Sonnyhou I may PM you if I can't get any movement anywhere!

    Thanks for the reassurance on the biopsy too.  Was thinking of all the bad things that could progress while I am waiting an eternity to be seen :)

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited October 2010

    localgirl

    sometimes this forum can be slow so it might take awhile to get some responses. I had some very well respected Dr's do mysurgery if you want their names. MDA is a great, great place just have patience.. wich I did not have. I wanted it out pronto. But the good news is life goes on and lucky you. They use the word cure with DCIS! I went to an oncologist at Baylor and he said less than one percent chance of recurrance. I did dbl mastectomy so this is the numbers given to my with my choice of surgery!. PM anytime.. if I can help in any way.. BTW.. how old are the kiddos?

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited October 2010

    oh BTW.. sorry for typos.. I am on an IPAD.. so difficult to type on!

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  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited October 2010

    Forget your doctor -- to speed things up I got ALL my films, hardcopy reports, etc myself and either hand carried them or faxed myself.   You can't do better than MD And. I would stick with them.  Once you send them everything, then just keep calling.  Ask to be put on a cancellation list, etc.   The squeaky wheel gets the oil :)    In the meantime, study up and learn all you can.  If you have a family history, see local genetic counselor (usually available in large hospitals) and get the BRCA tests done.  You'll have those in 2 weeks before you see surgeon and may have impact on decisions. 

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited October 2010

    fingerstnes.

    I chose dbl mastectomy because even though I was BRCA negative. I am young, 38, and have a strong family history. My mom had BC, my paternal grandma at age 40 and my paternal aunt in her sixties. Also, I was not up for the every six months of screening. I am thankful that I chose the dbl mastectomy because once the side that was suppossed to be healthy was removed there was atypical ductal hyperplasia in it. So there was a possibility that in time I would have had to deal with DCIS on the other side in the future. I did aerola sparing mastectomy. Took the nipples, kept the rest. I have implants. My reconstruction looks good but there are def drawbacks. No feeling. I am numb completely from them cutting the nerves. But do I regret it. No way!! very happy with my decision. No visits to an oncologist, no screening. Just have my fake boobs checked every six months with a manual breast exam by my gyno.

    Ask away, I will be happy to answer any questions. It is a very personal decision so you really have to take time to decide what is right for you.

    blessings!

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  • localgirl
    localgirl Member Posts: 39
    edited October 2010

    No apologies for typing! Wink

    My kids are 2 and 4 - younger girl, older boy. 

    I think if my BRCA test comes back positive I will be seriously considering the dbl mastectomy too.  those numbers in that case are definitely appealing.  Right now just ready to get movement.  Patience I guess isn't my strong suit! Embarassed

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  • speech529
    speech529 Member Posts: 337
    edited October 2010

    I am sorry you are dealing with this.  I was dx with DCIS in March this year and had an unilateral mx on June 28. Waiting is not dangerous for DCIS but it is not easy to wait.  I would stick with MD Anderson.  Do what you can to expedite getting an appointment.  Get lots of information so you are ready with questions. 

    I believe in MD Anderson.  My sister had a very rare and fatal cancer at the age of 38 (plasmacytoma--which is the precursor to multiple myeloma).  Her prognosis was very bleak.   She was treated at MD Anderson in 1996 with radiation only.  She is now 53 years old and in fine health.  They CURED her.  No relapse.  No other treatment.

    I hope your BRCA test is negative.

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  • localgirl
    localgirl Member Posts: 39
    edited October 2010

    Hi all -

    A wee update - my doctor's office just called and fortunately my BRCA tests came back negative!  A glimmer of good news!  Apparently MDA has all of my paperwork, and they are supposed to call me today to set up my first appointment - either that or I will just call every day until they get sick of me and put me on the schedule Smile

    My mom had her first appointment this week with her MRI scheduled for tomorrow.  She has 4 lumps, 3 invasive and 1 in situ.  No stage Dx yet.  

    Thanks for all of the support and I'll post updates when I have any new info!  

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  • Scrabblelady
    Scrabblelady Member Posts: 261
    edited October 2010

    I went to MD Anderson, too.  During the first call they old me it would take 4-6 weeks to get in  But fter all medical records were received, I had my appointment in about 3 weeks.  I actually went to all my doctors and got copies of my reports and I sent them to MD Anderson myself.  I wasn't going to wait for drs offices to get them out.  Once you get into MD Anderson, everything moves fast.  And you have the cassurance that you are getting the best of care.

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited October 2010

    Localgirl - Congratulations on the BRCA results, and I am both sorry to welcome you to this group and also sending you hugs for your mom, too.

    Been where you are and youll get through it. The waiting can be soooo stressful. Don't jump into mastectomy too quickly, you have time to settle your thoughts. As I said, been there, too. I eventually chose lumpectomy and rads. and now that I'm about a year from initial DCIS diagnosis, continue to be happy that I was given the option for that and chose it.

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  • localgirl
    localgirl Member Posts: 39
    edited November 2010

    Hi all-

    Thought I would give an update since I just spent the last 2 days at MDA...

    Re-did my mammogram and ultrasounds.  The mammogram ruled out the need to do an ultrasound on my left side, so that was encouraging.  The ultrasound of the right showed a suspicious lymph node that they thought was aggravated (that made 2 of us!) that they biopsied and thankfully it was benign.  Met with the doctor yesterday and given the size of my tumor (~8mm) they think breast conservation surgery is a good fit for me.  They will wait until the pathology comes back after 10days to see if there is any invasion and then if not, onwards to radiation, and if so, we will re-plan.

    I would love some advice though - so this may seem shallow given the magnitude of the whole problem, but my right side is already smaller than my left.  I am a little concerned that cosmetically after surgery and radiation that the difference would be more dramatic and I think that my bother me.  Rather than doing anything invasive with reconstruction right away, we're going to wait and see how I look after and go from there.  THink I could live with it if it saved an invasive back surgery for cosmetic reasons, but asked if there was anything like fat transfer they could do and there may be.  I don't need ot go bigger (I'm small and fine with that) but would like them to match if I can.

    Any thoughts or experiences would be appreciated - feel like it's silly but I think if I saw 2 totally uneven breasts everyday, it would be difficult.

    P.S. Surgery is on MONDAY!!

    THanks all-

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  • changes
    changes Member Posts: 622
    edited November 2010

    Localgirl,

    Depending on where the tumor is, you may not actually see any noticeable difference in the size of the breast. My tumor was larger than yours (1.1 cm) and the surgeon had to remove a golfball size area to get clean margins all the way around - and if it wasn't for the scar, you wouldn't be able to tell anything had happened. I was pleasantly surprised by the outcome.

    Good luck to you with your surgery!

    Karen

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited November 2010

    localgirl - Your concerns aren't silly at all! I agree with Karen that other than the scar, you might not notice anything at all, the size of your DCIS is really small. And as far as rads, join a group based on when you start, you'll make friends with people going through exactly what you are and it will definitely remove so many preconceptions and myths (I was part of the March '10 group)! At least for me, rads didn't change anything about the look or feel of my breast, just temporarily darkened, which is now almost entirely returned to the same as the other.

     Wishing you much good health and success with Monday's surgery!!

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  • localgirl
    localgirl Member Posts: 39
    edited November 2010

    Thank you ladies!  I appreciate all the understanding here.  I've struggled with being concerned about the cosmetic result when that really should be the least of my worries, but at 37, I feel like I'll be looking at these things for a long time still!  I'm optimistic, and at this point, I'm really just hoping they don't find any invasion - that would be the best luck ever.

    I'll let everyone know how it goes on Monday Smile

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