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sophiebaxter
sophiebaxter Member Posts: 4
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hello ladies- What a club to join, huh ?  I just got my results yesterday. Apparently we all have the 'good' cancer. (I told my daughter that I hope she never has to hear the words "You have cancer.") I am feeling somewhat hopeful after talking to the surgeon today. He already had to do an incisional biopsy last week just to do the diagnosis (no one thought it looked like anything).  He was able to get the entire 1/2 cm mass out with 3mm clear margins all around. I'm waiting to talk to radiation and oncology and I may not need another surgery but will most likely need radiation and tamoxifin. But of course will wait to hear what the consensus is.

What I want to know is- How do you deal with the worry ?  I would rather keep the diagnosis to myself, my family, my patient navigaotr (a godsend) and a couple of close friends- and you all of course for right now. I don't really like a lot of others knowing my business. Do any of you feel the same way ?

Thanks for listening.

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited August 2011

    We were just talking about this on another thread. 

    I personally don't like it when people get very emotional, so the first people I told (other than DH and kids -- adult males) were ones I knew wouldn't get too carried away. My treatment was brief, since I only had surgery and IORT, and I didn't tell most people until I was finished with the treatment.

    I knew some people would disappoint me with their reactions, and they were the ones who were told last. It's your life: tell whom you want, when you want. 

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  • Jelson
    Jelson Member Posts: 1,535
    edited August 2011

    One of the "benefits" of DCIS is that chemo - which often necessitates time off from work and normal activities due to unpleasant side effects  as well as the visible hair loss - is not necessary. If we require radiation, depending on where we live in relation to where it is available - can  schedule it before/after work and if your are a candidate - for a short regimen. So, we with lumpectomies for DCIS often have the luxury of keeping our diagnosis to ourselves.

    I only told relatives and friends who I thought would be hurt if they found out later from someone else and whose reactions wouldn't be over the top. As time went on, however, I was fortunate to get involved with my local breast cancer community - gathered a small group of women who were diagnosed around the same time with whom I go out to dinner once a month, joined a breast cancer dragon boat team etc. We are literally all in the same boat and this has helped with the worry. You are very early in this journey - and are still raw both mentally and physically. You are in control of your own information. You don't have to share now, you may feel differently as time passes - or not. everyway is ok.

    Julie E 

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  • echosg
    echosg Member Posts: 12
    edited August 2011

    I told everyone pretty much.  I had to have rads in the middle of my work day.  I was tired and had some problems with radiation.  It was good to know that my coworkers had my back.

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited August 2011

    I am sorry you had to join this club too.

     You are very early and have alot to digest and come to terms with, and at each step, your feelings may change. You have the right to talk about it when you want, and to whom you wish to. I had to have a mastectomy, so it was time off from work, and I easily talked about it. you will find many people, including men, truly are interested in learning and understanding what you are coping with.

    As far as coping with worry, I keep myself distracted and busy, and talk about it when i need to. In the beginning support groups upset me terribly, but now i drop in now and then, because it feels good to be with women who  understand. I also did use an antidepressent for about a year to get through it all...meds are always an option.

    I wish you the best!

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  • nguyeny
    nguyeny Member Posts: 14
    edited August 2011

    I was very open with the people I worked with since I had to take time off for my mastectomy and then exchange surgery. They were very supportive.  I also told families and friends. I just didn't want to tell everyone and was uncomfortable with bringing up the subject and still get very emotional. 

    I started a journal to write down my worries and fears and that seems to help me a lot. I also find that getting the support from the support groups and reading these forums help to elevate any concerns I might have. And of course, talking with my DH has helped me tremendously. 

    I wish you much luck!

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  • Emaline
    Emaline Member Posts: 492
    edited August 2011

    Since I had a uni-mx, it was obvious.  Plus, we are all very close at work and had just lost a co-worker to cancer...so I shared.  I have no issues talking about it.  For awhile that is all I wanted to do!!  Plus I felt the more I talked about it, if I could get one girl to go get her mammogram, and hopefully catch hers just as early as we caught mine? Then it is worth the discomfort of talking about personal things like this.

    It does get easier with time. For me, it got easier when I didn't have a doctors appointment every week, or two a week or three.  My anxiety is up again this week, but I know that is because of the upcoming surgery.

    After that, I plan on taking a year off from further reconstruction surgery.  So getting my nipples back, fat grafting, etc...can wait.

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  • ej01
    ej01 Member Posts: 155
    edited September 2011

    How do I deal with the worry?   By getting information. My biggest fear is not the disease itself, but not getting all of the information I need to make a good decisions.  I am trying to learn everything there is to learn about DCIS, the research, the studies, the theories that have not been studies, etc.  Initially I only told those who I thought could help me with that...not those who would just add on emotion.  I completely understand not wanting to tell people right away.  

    I am approaching DCIS as a major inconvenience in my life right now, not as a 'goom and doom' type of thing.  I started experimenting with how to tell people so I dont get the 'gloom and doom' type of reaction.    If I come right out and say "I have Stage 0 Breast Cancer" to someone that doesn't know what stage 0 is, all they hear is Breast Cancer and I get a huge emotional reaction...not what I want.   But if i start out by not calling it cancer (although i know that it is), but instead by calling something almost like a pre-cancer that could turn into invasive cancer if left untreated, the other person doesnt freak out and I feel better too.  

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  • sophiebaxter
    sophiebaxter Member Posts: 4
    edited September 2011

    Thanks for your reply but what is IORT ?  Radiation treatment of some sort ?

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  • sophiebaxter
    sophiebaxter Member Posts: 4
    edited September 2011

    ej01- I am trying also to think about this as something to be dealt with and then get my life back in the not too distant future.  Like you, I am also interested in looking into any kind of study about anything that might increase my chances of not getting this back again. So far I've seen info on plastics, organics, nighttime light, etc. I figure "What can it hurt ?" If you see some info, would you let me know ?  Thanks ! 

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited September 2011

    Sophie -- IORT is intraoperative radiation therapy. It's a single dose of radiation that's delivered during surgery. Not everyone qualifies based on age, tumor size, etc.; and it's not available everywhere. But it's VERY worthwhile to see if you qualify and whether it's available anywhere near you. Get the whole D@#^ thing taken care of in one shot!

    www.breastcanceriort.org 

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