newbie -recently diagnosed

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mlb1202
mlb1202 Member Posts: 10
edited October 2014 in DCIS (Ductal Carcinoma In Situ)

Hello all, 

I am 42 and was just diagnosed with dcis on Friday when my surgeon called with the results of a lumpectomy I had on 8/29 to remove what we thought was ADH. Needless to say I was shocked to hear that they found cancer (although noninvasive -stage 0) and that I would need treatment. : ( 

I am still trying to wrap my head around all this ... I  had my annual mammogram 7/22 when they found two small clusters of microcals. After 3-D magnified mammo was told needed core biopsy (had that a week later) & after that.. Radiologist said they found the ADH and needed surgery but that it was very "unlikely" they would find any cancer cells... Yet a week later everything's changed and I'm to go in for genetic testing and to meet with a radiation and medical oncologist. Due to family history (invasive bc for maternal aunt & two great maternal aunts) they want to test for the gene. If (-) treatment plan is 6-8 weeks of rads and possible tamoxifen afterwards... If (+) they are recommending double mastectomy with reconstruction?!!!! I'm so overwhelmed by all of this. However, I know it could be worse! Any advice, suggestions, comments are welcome!! : ) so happy I found thus group! Thanks all!!! 

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  • Solen
    Solen Member Posts: 146
    edited September 2014

    HUGS!  I was in your shoes at the age of 41.  Happy to say, I am now 54 and going strong.  I DO have the BRCA 2 gene, just had a bilateral mastectomy as they found DCIS in other breast ( note, do NOT take this to mean that YOU SHOULD JUMP TO THAT CONCLUSION FOR YOURSELF). In fact, I was not directed to mastectomy back then even with the gene.  It is a big surgury, I think many jump to it to quickly out of fear.  So, look at your personal situation with your doctors ( and find ones that you like and trust)

    But I am here to tell you, that life can and does go on, you are in the very scary part of being told you have cancer, without the details of what exactly you are dealing with.  Our minds tend to run to worst case scenarios, so take a deep breath.

    And though I say that mastectomy is big surgury and should not be decided on in panic, mine went surprising well.  Back to pilates in 6 weeks, off pain meds in a day and a half.  Try to be as kind to yourself as you can, exercise before surgury and as soon after as allowed.  You are as young as I was the first go round, and I know it is shocking and just plain sucks......but you are not alone, and you will find many strong and helpful women here and elsewhere who will help you along the way.  

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  • ballet12
    ballet12 Member Posts: 981
    edited September 2014

    Hi mlb, I had the same scenario.  I had ADH on core biopsy.  I went to my surgeon who had done three previous surgical breast biopsies for me, and he "kind of" joked with me, asking me what I was doing there.  I had researched that there was up to a 30 percent chance of upstaging from ADH to DCIS (or more), and he didn't think it was likely.  I wasn't blind-sided by the diagnosis, per se, as I'd had ADH/ALH diagnoses before, and knew it could be possible.  I wasn't happy to hear the word "cancer".  I asked him: "Is it cancer or DCIS?" and he said:  "DCIS is cancer."  I prefer to think of it as pre-invasive rather than the big "C".  Did you have clear margins after the lumpectomy?  It sounds like it, as you are moving on to radiation.  I did radiation, but needed two more lumpectomies to get clean margins (done at an NCI affiliated cancer institution), prior to the radiation.  I declined Tamoxifen or Aromatase Inhibitors.  So far so good.

    It's good that you are having a genetics evaluation.  I did that and it was negative (my mom had IDC).

    My advice would be to do things to help reduce stress--such as exercise, if that's something you do, or just walks in the park.  Getting your hair or nails done.  Doing something special for yourself.  It's going to be a stressful year.  It takes awhile to get to the other side, but eventually you get there. Ask if they do the Canadian protocol for radiation.  It is shorter (but higher dose).  I had it done at Memorial Sloan Kettering.  They do it for DCIS and early stage bc, as their standard treatment protocol now.  Early stage patients don't do the 6 to 8 week regimen. And come back to these boards.  It's very supportive here.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2014

    Welcome
    to Breastcancer.org. We're sorry you have to be here, but glad you found us!

    Besides sharing your experiences and learning from other members here at the boards, you may also want to take a look at the Breast Cancer 101 section from the main site, which is designed to help you sort through all of the information on our site to find what is more relevant to you right now.

    Also reliable information on DCIS—Ductal Carcinoma In Situ where you'll learn about symptoms,
    diagnosis, treatment, etc.

    Possibly of interest too is the Oncotype
    DX Test

    We hope this helps and we hope the genetic tests are negative.

    The
    Mods

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  • mrenee68
    mrenee68 Member Posts: 383
    edited September 2014

    mlb I was diagnosed at 43 with the same core biopsy said ADH and after the lumpectomy it was DCIS. Mine was spread over several areas so I was not given any option except mastectomy. I totally understand feeling overwhelmed. First take a deep breath and keep breathing, take it one day at a time, and educate yourself. Ask lots of questions and take care of yourself.once you get a plan in place it will be easier to deal with what is coming your way. Feel free to come back here and ask these wonderful ladies for advice, they are invaluable. ((Hugs))

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  • mlb1202
    mlb1202 Member Posts: 10
    edited September 2014

    Thanks everyone for all the support! I really appreciate it!! I will definitely be checking in through this process!!! Anyone take the tamoxifen after radiation? If so, what were side effects if any? Thanks in advance!

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  • Annette47
    Annette47 Member Posts: 957
    edited September 2014

    I've been on Tamoxifen (and had radiation) for about 18 months now, with very few side effects.   What side effects I've had tend to vary from month to month, anyway.   Some vaginal discharge, mild hot flashes, mild hair loss, brittle nails.  None have lasted that long or been severe enough to be more than a minor annoyance.  On the plus side, my menstrual periods are much more regular (and farther apart), lighter, and I no longer have the cyclical breast pain that used to drive me insane.

    You tend to hear on these forums primarily from people who have had problems with Tamoxifen, but I know several people in real life who have taken it and most have tolerated it very well.

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited September 2014

     I was diaganosed with DCIS after my doctor discovered a lump, then off for a mamo and ultrasound where the radiologist stated that she was very concerned and it looked very suspicious. So I went for the Stereotactic Biopsy, I guess thats a core biopsy,which came back positive for cancer cells. I met with the surgeon who told me that I had DCIS, Stage 0. She told me that I was going to be fine, that I had a choice to make as to whether I get a lumpectomy or mastectomy... I go back this Wednesday for scheduling of surgery. She also sent me for an MRI. I see your DX has other things like cm..grade, nodes, etc.. Does that DX come from the surgical lumpectomy or did it come from your original biopsy? Just wanting to know what I should know at this point. I am guessing that there was nothing super wrong with my MRI, as I haven't heard anything... What comes after the surgical lumpectomy if I chose to go that route??

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  • april485
    april485 Member Posts: 3,257
    edited September 2014


    Hi ThinkingPositive..sorry you had this diagnosis but this is a great forum and answering questions is what so many seasoned veterans do around here. Generally, standard treatment after a lumpectomy is radiation and then an anti hormonal if your cancer is estrogen positive. But, sometimes if you have a small DCIS and clean large margins, you can even skip rads and an AH. Up to you and your doctors. Best to you!

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  • blondiex46
    blondiex46 Member Posts: 5,712
    edited September 2014

    So glad u found us too. No questions r too much, no stupid questions. ? Cry, vent, what ever u choose to do. We r here. Familiarize urself with the site, the mods r awesome they will answer all questions they can.

    Now, sorry u had to join our club. Make sure u r comfortable with the drs., if not change them, remember they work 4 u. It is ok to cry, feel sorry 4 yourself,  have pity parties.

    My biggest advisce would b to write down the questions u have, take a tape recorder if u can, take someone with u if at all possible n keep a journal of all drs appts, tests, and a little synopsis of what happened.

    Good luck, breathe, it will b ok.

    Sandy aka blondie

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  • Annette47
    Annette47 Member Posts: 957
    edited September 2014

    Thinking Positive - to answer your question, yes information about size and staging comes after surgical removal, not after biopsy because until it is completely removed, you can't be sure exactly what is going on (imaging can be misleading as to size, and might not show the presence of an invasive component, etc.).

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  • mlb1202
    mlb1202 Member Posts: 10
    edited September 2014

    Thinking Positive. Sorry for delayed response here. Yes, as others have stated you will find out your size/stage/grade etc. after your lumpectomy surgery. Just had mine four weeks ago and it wasn't too bad. (Think the core biopsy was worse!) :) After you'll most likely meet with a radiation & medical oncologist to determine treatment but usually 6-8 weeks of RADS followed by a hormone therapy. (They want me to do Tamoxifen for 5 years after 6 weeks of RADS). They also recommended for me to speak with a genetic counselor and do the blood test to see if I had any of the high risk genes for BC as I had a family hx and due to my age. (I was negative) so they may recommend that depending on your individual factors, family history, age, etc. 

    I'm sorry you find yourself here, and I'm sending positive thoughts to you for your upcoming surgery. It is overwhelming and at times a lot to process but this is a great support, and all I can say is ask questions, and listen to your gut... You will know what is best for YOU going forward.

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  • SK1
    SK1 Member Posts: 2
    edited September 2014

    Hi all,

    I'm 36 and I've just been diagnosed with DCIS, cribriform type, grade 2. I had my first mammogram end of August after which I was sent in for a biopsy. After biopsy I got my diagnosis, which was very confusing to me.

    After meeting with General Surgeon, I'm still confused. Radiologist called it cancer, GS called in pre-cancer. 

    It was shocking to hear that immediate action is surgery and that you have to choose between lumpectomy and mastectomy. 

    I haven't decided what to do yet. I have MRI and genetic screening scheduled. They already told me there will be at least one more biopsy. 

    It all seems so invasive and aggressive. 

    I'm adding another choice which is to do nothing and let my body fight its way through this the natural way. I'm only saying this for dramatic effect  Maybe, maybe not.

    Anyway, I feel that everyone who is going through this deserves a medal. Big hugs to all you ladies out there that dealing with this. 

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  • Lillyrose234
    Lillyrose234 Member Posts: 3
    edited September 2014

    DCIS is precancerous.  That's it. But you won't know the FINAL diagnosis until you get it out and the pathologist looks at it.  Then you can think about what you want to do concerning adjuvant therapy. I chose to do nothing. Decided to save the BIG guns for real cancer if it should come back. I have a 98% chance it won't come back. Pretty good odds I thought. But that's just me. You will have to give up estrogen in all products and all sugar. Good luck!  

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2014

    There are two schools of thought on DCIS--one is that it is cancer in its earliest stage and the other is that it is precancerous.  In any case, whatever the semantics, left alone it can progress.  Something to think about.

    As far as treating it without surgery, but with natural means, please check the statistics on each approach. 

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  • Alpineartist
    Alpineartist Member Posts: 53
    edited September 2014

    Welcome, mlb. I checked your profile and so far you know that you are estrogen and progesterone receptor positive. That is a good sign. You are grade 2. That is pretty good. If there's no necrosis (or non-necrotic) many pathologists would say that you are grade 1. That's even better. A second opinion would be wise, and you have time. One of the best is Dr Lagios. Many of us here have used his service. -Well worth it. 

    I recommend surgery no matter what. You don't know what you're dealing with if you don't do it. In my opinion, it completes your biopsy.
    Until you have these results, try and concentrate on relaxing and living your healthiest. This will help with the healing. Come here for conversation or comfort. I have. -Grateful for that.
    As mentioned earlier, after surgery your team can order Oncotype DCIS testing, if applicable, to gain important information on how much preventive treatment you may need. They cover costs sometimes. 

    Once you know what you are dealing with, you have time to do your homework. Time to get good advice. Time to take a breath and ready yourself for what's ahead. It'll be ok. 

    Hugs,

    Kay

    (my story)

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  • Lillyrose234
    Lillyrose234 Member Posts: 3
    edited October 2014

    Alexgram how did you switch from er/pr positive to negative? Lots of love!

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited October 2014

    Dear Lillyrose,

    My MO doesn't think that I did change from er/pr positive to er/pr negative.  She thinks they are two different primaries. 

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