DCIS, what to do

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  • Felloco1
    Felloco1 Member Posts: 22
    edited February 2017

    hi there I had triple negative/ multifocal tumours on the right so mastectomy was a clear decision, but they found dcis on the left after biopsy & a wide local the margins were not clear so that information helped the decision to have a further mastectomy on the left particularly as triple negative has a high reoccurring rate.. I would list your Qs & concerns and talk with your consultant for the information on options and then decide. There are so many factors and everyone is individual in their case so keep your details key to the decision.i wouldn't google too much either as it often leaves more Qs than answers! .... support from family & friends and folks on here will help too .... I hope everything goes well for you best wishes x

  • annoyingboob
    annoyingboob Member Posts: 558
    edited March 2017

    hi bebe - you must be recovering comfortably by now - i hope your surgery went well, and path came back favorable!

    xxoo

  • suzydthatisme
    suzydthatisme Member Posts: 28
    edited March 2017

    Hi Bebe,

    I was diagnosed with DCIS after a diagnostic lumpectomy in July 2016. I had no lump....just architectural distortion that showed up on a screening mammogram. The biopsy showed atypical ductal hyperplasia so they proceeded with the lumpectomy to rule out cancer. Low grade, solid DCIS showed up in the pathology. I was referred to the local cancer centre....to a radiation oncologist, who stated that it was up to me: 90% chance it won't return without radiation and 96% chance it won't return with radiation. I opted not to do the radiation as there are side effects, particularly if the DCIS is in the left breast (closer to the heart). The treatment they suggest depends completely on the grade, size and whether they are confident they got good margins when they did the lumpectomy. As far as lumpectomy goes I would definitely not skip that.....but a mastectomy would depend on your family history, the grade and size of the lesion. My lumpectomy was no biggie....I was in and out and I had zero pain.

  • BebeZF
    BebeZF Member Posts: 67
    edited March 2017

    Hi suzydthatisme,

    Thank you for your comment. I have opted for the lumpectomy and awaiting path results. Have you been taking any meds? Tamoxifen?

    I am hoping I get the clear margins and will be done, should know in a day or two.

    Hugs

    Bebe

  • BebeZF
    BebeZF Member Posts: 67
    edited March 2017

    Hi annoyingboob :)

    I had the lumpectomy last week, but still awaiting the path results. And OMG, waiting is the worst. Hoping for the best. In a meantime trying to think about other things.

    How are you doing? How was the radiation? Have you started the T pill?

    Big hug

    Bebe


  • BebeZF
    BebeZF Member Posts: 67
    edited March 2017

    Hi Felloco1 and thank you for posting. How are you doing with the post op? Have you gone through reconstruction yet?

    I am awaiting path results so it will all go from there.

    Xoxo

    Bebe

  • annoyingboob
    annoyingboob Member Posts: 558
    edited March 2017

    i did 5 days of targeted radiation which i recommend if you have to do xrt once path comes in - check out the article i posted under the feb rads group. now im on tamoxifen - just started friday and so far so good!! best of luck for good path results - the waiting IS the hardest part!!! happy healing! xxoo

  • BebeZF
    BebeZF Member Posts: 67
    edited March 2017

    annoyingboob,

    I got my paths back today and all clear margins with no IDC. So relieved! Only those who went through this truly understand this journey. I may not need CRT, because DCIS was tiny, 5mm and it's medium grade. Meeting with radiology oncologist next week. My doc said that local xrt is not recommended for DCIS. Is local different than targeted? I will still inquire about it, but because my annoying boob is on the left side I really don't want xrt (too close to the heart), but one step at a time. Definitely will start Tamoxifen if no rads.

    Omg tonight I can take a breath and relax and it feels amazing. Thank you for all the positive vibes.

    Xoxo

    Bebe

  • BebeZF
    BebeZF Member Posts: 67
    edited March 2017

    hello Sitti,

    How have you been? My lumpectomy last week went fine, thank you for the prayers. It was as easy as you stated and going under was not a big deal. I was so tired that I was actually looking forward to some rest. We are stronger than we think we are. And once the time came, I was ready to get it over with. My paths came back today and all good with clear margins. Biggest relief. A few days break, healing time and decisions about rads (XRT). May opt against it as the DCIS was tiny at 5mm so hopefully I don't need it. But if docs insist, I may still not do it. Left side, close to the heart, will weigh my risks and see. Tamoxifen for sure and hope for the best.

    I know your surgery is approaching so I will now pray for you and keep my fingers crossed so all goes well and you get ready for it.

    Let me know how you are doing

    Big hug

    Bebe

  • annoyingboob
    annoyingboob Member Posts: 558
    edited March 2017

    awesome news, congrats Bebe!!

    I did a super short easy course of rads, but mine was 7mm and grade 3 on the right, but grandma died of BC. Fingers crossed you won't need anything further, but if they do recommend rads, ask for the short blitz that I got - I posted an article in the feb rads thread. But fingers crossed you are done, yay!! Congrats on your small speck and clear margins!! X

  • BebeZF
    BebeZF Member Posts: 67
    edited March 2017

    thank you annoyingboob,

    I will look for that article for sure. My doc said that local XRT are not recommended for my age... How old are you? I thought we are around the same age group.

    Thank you for your positive vibes, it really helped me to find strength and positivity. Now journey to recovery and health starts :)

    Will keep you posted and you do the same

    Xo

    Bebe

  • annoyingboob
    annoyingboob Member Posts: 558
    edited March 2017
  • MTwoman
    MTwoman Member Posts: 2,704
    edited March 2017

    bebe, so glad you got good path news and are well on your way to recovery. Pamper yourself!! ((hugs))

  • BebeZF
    BebeZF Member Posts: 67
    edited March 2017

    annoyingboob

    Yeah, very close. I will definitely inquire about it. Thank you for the tip.

    Have a good Wednesday :)

    Bebe

  • BebeZF
    BebeZF Member Posts: 67
    edited March 2017

    MTwoman

    Thank you ! And I am planning on it for sure. Need to reevaluate priorities :)

    Happy Wednesday

    Hugs back

    Bebe

  • Sitti
    Sitti Member Posts: 230
    edited March 2017

    BebeZF- How did I miss your post!? I thought I would receive a notification when you posted but I didn't. HOW WONDERFUL that you got good news on your pathology and clear margins. I hope you are resting up and sleeping easier. I'll be praying for wisdom for you regarding xrt. I'm so happy for you! . ((Hugs))

  • tlj1973
    tlj1973 Member Posts: 3
    edited March 2017

    Hi everyone,

    I'm not sure where to start....I had Lumpectomy with Bilateral Reconstruction and Reduction on 2/27 for IDC and have been home recovering. Received  phone call from my Breast surgeon on Wednesday- knew something was wrong when she called me personally and early in the morning. She called me to come in and discuss my pathology. The tissue removed during my reconstruction showed areas of DCIS scattered over 15 cm. None of this showed on any of my mammograms and no one had any idea. So, now I am going to have mastectomy on the right side. I am in total shock.

  • Sitti
    Sitti Member Posts: 230
    edited March 2017

    tlj1973, I'm so sorry you have to be here and find yourself facing yet another surgery. I'm sure you are in shock thinking you were done with surgery, and then finding out you need a mastectomy is a lot more to process. From what I've been reading on these forums, unfortunately, finding DCIS/more DCIS during surgery it is not as uncommon as we would like to think. My mammo showed 2.5 cm and came back 4.4cm. My navigator said sometimes it's hard to see the extent of DCIS on mammo. I'm sure some other ladies that have perhaps been where you are will comment. I see that your nodes came back negative and that is good. I'm glad you found this forum, you will realize you are not alone and find much encouragement from others. It doesn't sound like you have any dates but there is also a March surgery forum, I'll put the link below.

    https://community.breastcancer.org/forum/91/topics/852338?page=1

    Sending you hugs.

  • Marlenex2
    Marlenex2 Member Posts: 14
    edited March 2017

    I'm so very sorry you're enduring more. I have not been diagnosed but BC is suspected. I am waiting for my MRI. Hang in there, I know easier said than done. ((HUGS))

  • BebeZF
    BebeZF Member Posts: 67
    edited March 2017

    Sitti,

    Yes, I am so glad about that first step ending on such a positive note. I am so uneasy about Rads and Tamoxifen that I am conducting an extensive research and meeting with both docs again just so I can make a good choice. Both are recommended but radiation just doesn't seem great knowing that it can cause secondary cancer, heart issues, etc. And going through it still doesn't guaranty anything just decreases the risk. Oh well, should figure it all out in the next few weeks. I will be praying for you now, so your surgery goes well. Are you still having it on 3/22? Time is flying by. I hope you are in good spirits and getting ready to be over with it and start your recovery process. Waiting is the worst.

    Great to hear from you, xoxo

    Bebe

  • BebeZF
    BebeZF Member Posts: 67
    edited March 2017

    tlj1973

    This is hard to diagest news. I know, because I was waiting after my lumpectomy too, thinking all sort of thoughts. But thinking positive, it's DCIS and grade 1 and clear nodes. That's very important as Sitti mentioned. My prayers and positive vibes go your way that you will stay strong as it all will work out. Women here are amazing and supportive. We all need to build each other up as this BC is a process and from what I hear it lingers throughout life. We are here for you. Prayers and hugs

    Bebe

  • BebeZF
    BebeZF Member Posts: 67
    edited March 2017

    Hi Marlenex2

    Welcome and keep us posted. Hopefully MRI will not show anything and you don't have to worry

    Big hug

    Bebe

  • Gkim
    Gkim Member Posts: 18
    edited March 2017

    did u have lumpectomy already? I'm still waiting for my gene testing results, 3-4 weeks. Then they said if positive mastectomy, if not implant removal with lumpectomy then radiation. With tamoxifen for either. I have a 3.3 cm high grade (-) on left and 1cm on Rt, (+). Dcis . I wonder if I will be making the right decision too.

  • BebeZF
    BebeZF Member Posts: 67
    edited March 2017

    Hi Gkim,

    Yes, I had my lumpectomy almost 2 weeks ago. What made this initial decision easier was to review the genetic testing and talk with all the docs. Once I had all the info I went with my gut feeling. No matter what each option has cons and pros. I wish there was a crystal ball to show us the future.

    So far I am glad I went with the lumpectomy, got a clear path confirming what biopsy showed and clear margins. I am meeting again with the radiology oncologist today to discuss treatment options. I really don't want any rads.

    One step at a time and you will make the right decision.

    Hugs,

    Bebe

  • BebeZF
    BebeZF Member Posts: 67
    edited April 2017

    Hello ladies,

    I have opted to forgo radiation treatment as my Onco Type DCIS test came back as 0 which means about 9% reccurrence in the same spot in the next 10 years. Anyone decided against radiation with the DCIS diagnosis?


    Bebe

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