Feeling overwhelmed...

Options
Js5
Js5 Member Posts: 17
edited July 2015 in Just Diagnosed

After a biopsy to check a cluster of microcalcifications, I was diagnosed about two weeks ago with DCIS, grade 3, estrogen and progesterone positive in my left breast. Two days ago, I had an MRI to check tumor size and also check right breast. Now they want me to have an MRI guided biopsy to check a cloudy area on my right breast. I have genetic testing appointment tomorrow. I feel like my surgeon is pushing for lumpectomy (possibly in both breasts) but I am so anxious about all the testing and waiting, I almost feel like a bilateral mastectomy would be better. There are so many decisions to make and I feel like they need to be made quickly. How do I slow down and process it all?

· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Dear Js5,

    Welcome to the BCO Community. We're so sorry to hear about your recent diagnosis but we're really glad that you've found the BCO community.

    The ladies and men here will understand what you're going through and can help you through it.

    While you wait for more responses you might like to take a look at the link below. It was created by one of our long standing members - Beesie, and gives an in depth understanding of DCIS.

    A layperson's guide to DCIS

    Best of luck with your genetic testing tomorrow, we hope you come back and let us know how you got on with it. The link below includes information on what to do if it's positive, negative, or uncertain.

    Genetic Testing

    Sending warm wishes your way,

    From the Moderators.

    · Share on FacebookShare on Twitter
  • ml143333
    ml143333 Member Posts: 658
    edited June 2015

    Js5 - you do have time for second opinions and to have the surgery that works best for you.  Don't let the physicians rush you into a decision.  Take the time to make the one that is right for you.  Many women choose lumpectomies and many women choose mastectomies.  Just make sure that the decision is yours!

    · Share on FacebookShare on Twitter
  • msphil
    msphil Member Posts: 1,536
    edited June 2015

    you have come to the right place for we here know how u are feeling, some been there as i, and some going thru as are u, so take a breath and  get the info here to help u thru. msphil

    · Share on FacebookShare on Twitter
  • art15
    art15 Member Posts: 66
    edited June 2015

    DCIS is not invasive, you caught it early. I think you should not be pushed. My wife had IDC w/ some lobular stage 2B, grade 3, and her lumpectomy was fine after 8 years. She had only one lymph node cancerous, a .3mm in a 3 mm node, she had (4) chemo cycles and radiation, you haven't said if lymph nodes involved, if not, thank God you caught this early and we wish you the best.

    · Share on FacebookShare on Twitter
  • maxdog
    maxdog Member Posts: 147
    edited June 2015

    For me, I had all the testing and then there was a lot of waiting. I am still waiting for surgery-2 months from diagnosis. It will slow down, but also tell your doctor that you need time to process everything. I was totally overwhelmed at first with all the appointments, working 2 part time jobs and raising a young family. I knew something had to give. I started my leave from work and everything seemed to slow down. I was able to take one pan off the burner and view things differently. Take all the time you need, this cancer didn't grow overnight and it doesn't need to be removed tomorrow. Good luck!


    · Share on FacebookShare on Twitter
  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2015

    Take time, its a massive decision and irreversible.......you do have time.........its always hard but never make a decision based on fear, make one based on sound reasoning and what feels right......double mastectomy for DCIS is extreme - my cousin had DCIS and lumpectomy years ago, (about 15 years I think now) no further treatment and no cancer of any kind since................

    · Share on FacebookShare on Twitter
  • jc254
    jc254 Member Posts: 439
    edited June 2015

    Yes, with DCIS you certainly have time to process your diagnosis and get a second opinion. I always think a second opinion is a good idea. For the majority of women, a lumpectomy is very manageable surgery. Not a lot of pain or downtime when compared to mastectomy. You can always get the lumpectomy and have a mastectomy at a later date if genetic testing leads you there. You can't undo a mastectomy so that's a decision that deserves a lot of research and a lot of thought. Good luck with your decisions, things seem to fall into place once the initial shock wears off.

    · Share on FacebookShare on Twitter
  • art15
    art15 Member Posts: 66
    edited June 2015

    There are articles written that DCIS is NOT cancer, but, "pre-cancer" and if the statistics for chemotherapy were to exclude those patients that were DCIS, the survival rate would plummet, I read this, it's out there that the inclusion of DCIS patients who opted for radical surgery/chemotherapy makes the statistics look better for chemo drugs, and this is what the drug companies want, I'm not saying chemo doesn't work, but there is a debate out there about DCIS included in some chemo/survival results, when there is a voice out there that says radical surgery/chemo is not necessary if dx is DCIS, and not yet IDC. If I'm wrong, please respond ,respectfully tia. I read this at Poolsters Breast Clinic, La Jolla, CA library, while I was waiting for my wife, fyi. I have no idea if this is what the drug companies want, that's a conspiracy which I don't believe, but DCIS patient imput who chose chemo makes the results look better is all I'm saying.

    · Share on FacebookShare on Twitter
  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited June 2015

    When it comes to a feeling of being rushed, it's good to remember that stress usually creates a feeling of "action needed" in order to reduce the stress. It's just a feeling and can be ignored. You have time to take your time.

    · Share on FacebookShare on Twitter
  • Js5
    Js5 Member Posts: 17
    edited June 2015

    Thank you all for the advice and helpful links. I will continue reading and learning more about my options and trying to slow down. I had my genetic counseling appointment today and chose to do all the testing that I can. Should have results in a few weeks. Thanks for all of your support.

    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Thanks for the update Js5! Please let us know how your results turn out...

    --The Mods

    · Share on FacebookShare on Twitter
  • I_Spy
    I_Spy Member Posts: 507
    edited July 2015

    I'm just jumping in because I had to make a similar decision and it was difficult; I chose lumpectomy at first but with a recurrence it is time for BMX. Kayb, just a point: you correctly point out that per the statistics, in general lump with rads has the same survival rates as mastectomy. However, you added: that lump/rads is "equally effective in preventing a recurrence." That is not actually the case. Mastectomy does not, in most cases with all things being equal, improve the chance of survival. A person with DCIS will have a recurrence based on the statistics of recurrences; the idea being that someone who has DCIS will get close follow-up and future recurrences or new cancers will be caught early and removed, therefore not lessening a chance of survival. The point here is if you fall in the center category of the statistic (so, no additional risk due to family history or dense breasts), your survival is not increased by mastectomy. But you may very well get another cancer in the breast tissue remaining after lump.

    I point this out because it is a common misconception that lump/rads vs. mastectomy is the same as it relates to cancer recurrence -- and that is not the case at all. The study only had to do with survival. :)

    · Share on FacebookShare on Twitter
  • CAMommy
    CAMommy Member Posts: 437
    edited July 2015

    I am similar as you. I have DCIS, grade 3. I am choosing a lumpectomy with internal radiation (2x a day for 5 days). I am also going to get genetic testing, I do have a family history, but have tested brca 1/2 negative.

    We are in the process of moving so I need this taken care of as quickly and painlessly as possible for me. Once we get to our new location and given either my genetic testing results or is I have a recurrence, I will opt for a bilateral mastectomy. But right now is not the time for me and I feel 100% confident that my decision is the best for me given everything.

    At first I wanted a bilateral mastectomy just because I felt to betrayed by my breasts and just wanted them gone. But after talking to my surgeon I feel better about lumpectomy.

    · Share on FacebookShare on Twitter
  • Js5
    Js5 Member Posts: 17
    edited July 2015

    CAMommy,

    I also considered lumpectomy but decided that I would rather just do mastectomy and get it all done at once. I didn't want multiple surgeries. But if I were in your situation, I would prob do the same. We all have to do what is right for us.

    Also, wanted to let everyone know that genetic testing all came back negative. :)

    Keep in touch, J

    · Share on FacebookShare on Twitter

Categories