DCIS again? Don't know what to do.

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited October 2011

    Ugly what is with my posts above. Let's see it 3rd times the charm. 

    WISHING YOU MUCH GOOD NEWS AND INNER PEACE WITH WHATEVER YOU DECIDE!

    I was in a similar situation to yours and can appreciate the trade-off of waiting vs. the deductible. 

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited October 2011

    Just a note of caution.. if you are going to do "watch & wait" insist on a breast MRI as you settle into your 6 month waiting period - an breast MRI could tell them that there is reason to move now... 

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  • DebiMetz
    DebiMetz Member Posts: 8
    edited October 2011

    Hi Crazy Daisy - I was recently dx'd with DCIS in my left breast but my BS said a lumpectomy and radiation should take care of things.  However I just learned that the DCIS is more wide spread throughout my breast and she cannot remove it all without doing a mastectomy.  I am worried about that process but also considering what I should do with the right side, no DCIS was spotted but then again, no one knew how wide spread it was on my left til I had surgery.  Mammo's, u.s. and the biospy did not pick it up.  I do not want to go through the whole mastectomy, reconstruction process on the left do have to repeat it on the right down the road.  Have you had to have surgery or are  you still contemplating surgery, I am trying to find someone in the same situation.  Worried in Michigan...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Jmb5



    Please don't second guess yourself. While I am not in the same boat the DCIS was my first and I elected a BMX I did wait after calcifications showed up on Mamo after a consult with my BS. She indicated to me that even if this was cancer 6 months is not that long in cell growth time. So if it makes more sense financially for you to wait 3 months now than I am sure even if this is DCIS than no difference in outcome will be had. You will be in a better place for the journey that may lie ahead. Husbands just don't get it sometimes. They think very logically when all we really want them to say is " I understand anything you want I will support you I know it is tough on you we will get through this together". He already thinks you made up your mind and that chapter and decision are closed so let's move on. That's why we come to these boards to get the support we need from those that have walked in our shoes.



    When I was recovering from BMX in April my husband was getting very concerned for I was spending so much time in bed. He called my son at college and told him something was really wrong with me. My son yelled at him. "dad she just had major surgery a few weeks ago she needs to heal, she needs to be taken care of, she needs you to just understand and don't push her, she needs you to be the rock". My son called me to make sure I was alright and to retell me what he told his dad. He told me to stay in bed as long as I needed and to demand whatever I needed to feel better and that it was ok to relax and recover. How proud I was and what a boost to my healing it made. My husband got it too and I have been nurtured very nicely. Just had my exchange suugery a week ago and the nurturing continues



    As women we tend to always do for others to our own determent. We just got to tell them what we need for they somehow just don't get it.



    Wishing you all the best and heres hoping the new calc are b9



    Liz

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  • jmb5
    jmb5 Member Posts: 532
    edited October 2011

    Iluv2knit-

    Did you have DCIS? and what did your mammogram look like when they told you it was okay to wait? Mine has scattered calcs. Last time, the calcs were clustered.

    Thanks everyone for the well wishes. My dh apologized to me the next day and said he wasn't proud of his reaction. I guess for now I'm still planning to wait until January. I am checking with insurance to see if the 4th quarter can carry over, and I am going to call the hospital about biopsy costs. This all sucks!

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  • jmb5
    jmb5 Member Posts: 532
    edited October 2011

    Thanks, Liz. My surgeon said the same thing, that waiting a couple months won't change the outcome. I just want to know NOW! I'm not feeling very patient right now. The choir director at church asked me to be the accompanist from Jan. thru May. I thought to myself, "I might have cancer then. " :(

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Jmb5



    I can relate patience is not one of my strong suits either especially when it comes to BC. You are doing everything you can to gather as much information both medical and insurance that you can once all of the info comes together you will know what is right to do for you. Just think you may also be the accompanist without cancer either come January and if by chance that is not the case you will knock this dreaded disease on it's ass like you did the first time. All positive thoughts and prayers coming at you.



    Liz

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  • rgiuff
    rgiuff Member Posts: 1,094
    edited October 2011

    Since most cancers are so slow growing, maybe the 6 month recommendation was because if it was something spreading, it might not even show up distinctly for awhile.  If it were me, I'd feel OK with waiting until January.  My Onc recently ordered an MRI because he thought he felt something under my arm.  Well insurance turned it down and his office was fighting it.  I kept calling insurance and Onc's office.  My gut feeling was that it was nothing.  It never got done.  I went for my next appt. with the Onc 4 months later and this time, he no longer felt anything there at all.  So that MRI would have been totally unecessary.

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  • jmb5
    jmb5 Member Posts: 532
    edited October 2011

    Yes, rgiuff, I think that was the general concensus with my doctors, that DCIS is slow growing, so waiting until January would not change the outcome for me. My radiologist said I could wait for a 6 month follow-up, but my very conservative surgeon said "No way!" I'm glad, because April seems like a long ways off. Like I said, I'm not really worried, I just want to know. I hate that gnawing feeling that it might be back. It has been such a hard few months. My dear friend's 9 year old daughter died from cancer just 2 months ago. I was there, watching them lose her, and now, watching my friend's agony. Another friend was diagnosed with IDC a couple weeks ago. She is not quite 40. Lots of emotions. I do not like this new reality.

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  • jenny12000
    jenny12000 Member Posts: 39
    edited October 2011

    jmb5, sorry for your friend's daughter and you other friend. it's sad.

    I am 5 weeks out after finished my radiation. I visited my MO last week and asked about my next mammogram. He told me it would be 12 months. I questioned that becaue from my understanding it should be 6 months. He said that it only needs to be 12 months because DCIS is very slow-growing. I just need 12 months mammogram and have a physician to do the check every 6 months, in addition to monthly self-exam. He then did the physcial check and felt there might be a small cyst there (I don't feel it)...so, it's better to do the mammogram in 6 months then. he is counting that from my original mammogram so it should be the end of November. I postponed it to be Jan 2nd with the same consideration of deductible (I just added my husband to my coverage this month...so, the deductible is a new one). Of course, everyone is different...but if it's me, I probably would wait for a couple months.

    I am not taking tamoxifen which my MO told me last week again that he fully supports it. jmb5, do you wish you would have? I know we all made the decision with the best of our knowledge, the circumstance and our comfort level. Just wondering.

    I am sure everything will go well with you. Best wishes.          

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  • jmb5
    jmb5 Member Posts: 532
    edited October 2011

    Jenny,

    Someone else asked me the same question... do I wish I would have taken the tamoxifen. I have never second guessed that, and even if it would come back that I have DCIS in the other breast, I still don't regret it. I didn't feel the benefits outweighed the risks.

    I did call my insurance company yesterday, and found out that my deductible is actually $3000, not $2500. So if I would have cancer again, and begin treatment now, I would be looking at 2 deductibles for a total of $6000!! I am planning to wait until January for the biopsy. I guess that's the luxury of slow growing DCIS.

    And by the way, I have always done 12 months mammograms and 6 month check-ups since my dx 2 years ago.

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  • jenny12000
    jenny12000 Member Posts: 39
    edited October 2011

    Good, jmb5. I am glad that you seem to sound a lot better now. I hope you can relax for two more months. The new year 2012 is just around the cornor. 

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  • jmb5
    jmb5 Member Posts: 532
    edited October 2011
    Thanks, Jenny. I'm not sure "relax" is a good word, but I'm trying. Smile I looked up my old biopsy bill from 2 years ago, and it was pretty close to $3,000 (which is the deductible amount), so waiting til January is the best option. I will be 3 grand in the hole, but the good news is I'll have free health care for the rest of the year, including 20 massages. Can't beat that! I don't like my new reality that I could go through this year after year though.
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  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    Faulkh, great story about your son! I love it when the adult children "come through" like that. 

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  • Janathan
    Janathan Member Posts: 121
    edited October 2011

    Hi  jmb5.  Yeah, no need to second guess the Tamoxifen.  I took it for a year after my first diagnosis in 2002, but then was diagnosed a second time in 2009.  Both diagnoses were after routine mammograms that showed clusters of microcalcifications which the radiologist was fairly sure was BC.  Unfortunately for some of us, time and/or money plays a role in our decision-making.  After my first diagnosis I couldn't afford the time off work for a mastectomy with two kids in college so had a lumpectomy, radiation, and took the Tamoxifen.  After the second diagnosis I had bilateral mastectomies.  2009-2010 was pretty tough, but I am so fortunate I was diagnosed early.  Try to stay positive and educate yourself about DCIS as much as you can.  I wish I knew about breastcancer.org after my first diagnosis.  There is so much support and helpful information here.  I hope your biopsy turns out negative.  Wishing you the best!

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  • jmb5
    jmb5 Member Posts: 532
    edited October 2011

    Janathan,

    Thanks! Can I ask what your calcifications looked like? The first time, mine were grouped, but this time, they are calling them a "loose grouping", which I guess is a good thing. Also, why you decided on the BMX? Now that there is a possibility I have DCIS in the other breast, I have wondered if a lumpectomy would still be the way to go. I just don't want to keep going through this. I thought I was doing well, but I am filled with worry again. I would like to know how common a loose grouping of microcalcifications are in a 42 year old woman.

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