Has anyone had Reoccurance of DCIS after a Mastectomy

Options
123457»

Comments

  • blah333
    blah333 Member Posts: 270
    edited February 2019

    ps0705 Oh man...... glad to hear your results were benign. I am also waiting for biopsy results for an enlarged node or two nodes. But they have been swollen since 3 months after my surgery. They just never went down.... it is still stressful and makes me feel doomed/paranoid. But I'm glad to see that you had a enlarged node and are "fine".......


    Pamnash5 my heart goes out to you, my nightmare is something similar. Luckily there are many women on this site with similar experiences. Once you know your treatment plan I would post in some other sections and you should get good feedback and advice. There are some cancer orgs that help women and give donations/grants but they only gave me $140 so I'm not sure if any one of them would help you with paying bills. They did pay ONE bill for me, ha. Hang in there.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019

    should I request an MRI or Pet Scan to figure out whats going on with this lump? Its on the bony part of cleavage area between the top of the implant and my collarbone. I have appt for regular primary doctor on Monday I was going to call today and swe if she can put orders in to do an MRI or Pet Scan. Ive never had an MRI or Pet Scan for my breast. My BS usually uses ultrasound. Is that as effective in determining if this is cancer, fluid pocket, scar tissue, fat necrosis etc?



  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019

    so... i called my primary dr today and said im coming in monday feb 25 for an appt. I found a lump that i would like to have looked at either by MRI or pet scan. The woman (receptionist) said ok come in a few minutes early to soeak to dr i will put that in your chart.


    When i go on monday will she send me off to get the imaging done then or is this something that will happen days from then?

    The receptionist asked if im seeing a breast surgeon. I said yes ( i fibbed a bit) and said but i dont have an appt til June. Im worried that my primary will direct me to bs and bs will do the routine ultrasound and say its nothing.


    Thoughts?!

  • blah333
    blah333 Member Posts: 270
    edited February 2019

    The best way for answers is usually a biopsy. Then if results are positive they do MRI imaging of the area. I'm not sure why they would opt to do a scan first. But an ultrasound - yes. They'll be able to see if a biopsy is necessary.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019

    blah333,

    So you think an ultrasound is sufficient? I have an appt with bs on thursday feb 28. Im sure during that appt they will ultrasound the area but theyve told me that since i had dcis and my treatment was double mastectomy my chances of having another bc diagnosis is pretty close to impossible. Whenever i bring up a lump they always tell me i should stop worrying. The cancer is gone and wont come back because it was ductal and removed.

    I just want the most thirough check to see if its something or not. Ive had lumps that turned iut to be areas filled with fluid adter fat grafting. I usually have them aspirated every 6 months. But this is a hard lump basically on the bone below my collarbone and above tge implant on left side in towards the cleavage are

  • blah333
    blah333 Member Posts: 270
    edited February 2019

    It is not "near impossible"...but is quite rare for recurrence (2%ish). Because their are no ducts that means if it comes back it would be invasive. But there are all kinds of little bumps that can emerge. I imagine they'd feel the bump and do ultrasound and then do a biopsy of the lump if necessary. They would probably do an ultrasound of your lymph nodes/axilla too. I doubt they would jump to MRI right away. I was told if it comes back it usually happens along the scar line...

    Have you felt other bones on your body? A lot of them have little bumps. I freaked myself out touching some ribs of mine (no recon) thinking that I had a new lump, but then if I felt bones on other areas of my body or on lower ribs, bones have a weird bumpy texture... however, they do seem to move and not be so "hard.' Hopefully you get answers soon.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2019

    The chance of mine coming back as it did was less that 1% and they told me they were 99% sure it was benign. They were 100% wrong. Get answers.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019

    Well just left my primary dr office. Shes sending me dor an uktrasound today at 300. Please say a prayer for me.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2019

    Let us know how it goes. Glad you got in so soon.


  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019

    kbeee,

    Well, they saw what i felt on ultrasound. Now keep in mind this is an imaging center my primary sent me to not my bs doing the imaging... but they saw one spot that looked fluid filled. And another that the radiology tech called a complex cyst. There recommendation was wither:

    1) Wait 3 months and see if it gets larger or

    2) biopsy the complex cyst and make sure theres no concerns.

    He followed that up with we cant guarentee we dont damage your implants!! He asked what i wanted to do. Well, first off if i biopsy it would be my bs doing it not this guy! He wasn't nice at all.

    I told him i would make an appt with my bs. I have an appt this thursday. We will see what she says.


  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019

    do any of you know anything about a complex cyst? Anything to be concerned about?

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2019

    I think the decision to biopsy them is subjextive. Get a copy of the report. You can then post the text of it on the thread for interpreting your report and DJ mammo can weigh in.

    https://community.breastcancer.org/forum/83/topics/858196?page=38#idx_1112

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019
  • pinkvictory
    pinkvictory Member Posts: 58
    edited March 2019

    @Mommyathome how did your appointment go on Thursday? Hoping it went well for you


  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited March 2019

    Well started off with the pa saying “listen we already looked at those areas its just fluid pockets. Why are we doing this again?” I said when i went to my primary doctor she sent me for images and they saw a concerning spot. She said well they dont know ur history. We aspirated it before thats why it looks complex. Its fine its just fluid. She trasounded it and confirmed and then sent me on my way. So, its fine. She said again that the change of a recurrence is less than 1 percent i need to stop wirrying.

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2019

    Sounds like that PA was condescending. How frustrating. I got angry just reading that. Go for the rescan in 3 months and see if anything has changed. And hopefully you do not see that PA again.

    I am sensitive to this because I dumped my exMO after he blew me off when I had a concerning lump and said , “ you are NOT at risk of recurrence. If it goes from a grape to a golf ball, call me. Otherwise, ignore it".

    As you can see.... he was wrong. I recurred 6 months later

    Someone that tells you not to worry just does not “get it". It is fine to say you are low risk, but then stress the need to always remain vigilant

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited March 2019

    she was condescending. It was lije I was wasting her time. She said the radiologist has no clue. I said well thats wxactly why im here! i want YOU to check it. I felt like saying now just check it and stop making me feel bad about being here!

  • pinkvictory
    pinkvictory Member Posts: 58
    edited March 2019

    wow! Seems like oncologists with compassion are hard to come by. Seems people frequently get dismissed or belittled for being concerned about their own health. Bet they’d feel differently if it were their own body.


  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited March 2019

    this was actually the pa at the breast surgeons office. Ive only been to the oncologist once and that was 5 years ago to determine I didnt need tamoxifen

  • TheLadyGrey
    TheLadyGrey Member Posts: 231
    edited March 2019

    if I understand correctly, the DCIS (needle biopsy) diagnosed on my remaining right breast would be considered a new cancer.

    Only if it is found to be IDC after mastectomy (which is what happened seven years ago) would it be considered a recurrence.

    If it is a recurrence rather than DCISis a different chemo recommended? In other words, can you have the same chemo regime twice?

  • Barbjc
    Barbjc Member Posts: 28
    edited April 2019

    Hi all, my thoughts are with all of you and thanks for posting. I'm still in disbelief. I had a bilateral Mastectomy February 2018 with reconstruction finalized in June 2018. I had DCIS, but it was grade 3, also had micro-invasion. About a month ago, I found a small pea size cyst just under my skin in the same area as I had DCIS. They did an ultrasound and then recommended a biopsy… but they thought it was just going to be fat necrosis. I opted to have my breast surgeon do an excisional biopsy surgery so that she could take the entire "pea" out instead of just a needle biopsy of it. My surgeon called me yesterday to say she was shocked because she found DCIS in this nodule she took out. They are now recommending radiation and for me to go on Arimidex. I spent last night not sleeping, first being shocked than angry then crying and holding my husband for about two hours and now I'm just pissed again. I'm curious, if I had grade 3 DCIS, and if there is tissue left after a Mastectomy, why wasn't radiation recommended last year? They did recommend tamoxifen but I didn't go on it because uterine cancer runs in my family and that gives you an increase in uterine cancer. I'm trying real hard not to look back and be regretful about a treatment I didn't do and just try to move forward I'll get there but it's pretty hard right now

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2019

    Barbjc, did you have any close margins following your mastectomy?

    I too had DCIS-Mi (which because of the presence of the small amount of invasive cancer is Stage I, not Stage 0) and I too a MX. The final pathology showed one close surgical margin (1mm) at the skin. Radiation was not recommended, but at the time of my exchange surgery, I asked my PS to remove the edge of the skin at the scar line, since that is where the close margin was located and that's the most common location for a recurrence after a MX.

    Normally rads are not recommended after a MX for DCIS, except in rare occasions where there is a close surgical margin, and usually more so if the close margin is by the chest wall, since there is no way surgically to remove that. When there is a close margin at the skin, it's not uncommon to remove a bit more skin, as I had done. The alternative when there is a close margin is hormone therapy, which normally would not be recommended after a BMX for DCIS or DCIS-Mi. I wonder if you did have a close margin and that was the reason for the original recommendation that you take Tamoxifen.

  • Barbjc
    Barbjc Member Posts: 28
    edited April 2019

    Hi Beesie and thanks for your reply. I recall that my margins were clear after BMX, but I did have a nipple sparing so perhaps that's why the tamoxifen was recommended. I will recheck my path reports on that. It is my understanding that tamoxifen or arimidex is always a recommended standard after a lumpectomy or Mx even with DCIS...at least it is in the area where I live.

  • Barbjc
    Barbjc Member Posts: 28
    edited April 2019

    Hi Beesie,

    Just dragged out my breast cancer file that I thought I would never have to take out again! Ugh! Ilooked up my path for BMX and it stated that the final margins were clear.

    Of the 11 blocks examined in my left breast, only one block had DCIS, solid comedo nuclear grade of 3. My most recent small cyst was in the same area as my original breast cancer...although in my original breast cancer I never had a lump, just calcifications.

    I haven't read your information yet, did you have any recurrence or a new breast cancer develop, or are you still good? are you taking any hormone therapy?

    thanks again for taking the time to respond, you sound very knowledgeable and helpful in this area!

  • TB90
    TB90 Member Posts: 992
    edited April 2019

    Barbjc: Sorry you are back here again. If there is anything positive about this it's that you developed a cyst or otherwise you may never have detected the DCIS until it could possibly have progressed. I am so glad that Beesie is here for you as she was for me five years ago. Also, do not regret the choices you made. Your care and treatment sounds very standard. Hormone treatment is not standard care and you never would have been given radiation following a mx with clear margins. I had one positive margin and not near my chest wall. My breast surgeon would not even consider a re-excision. Nor did she recommend radiation. And whenever I suggested getting a second opinion, everyone referred me to her. So she was considered the best in Winnipeg. Not satisfied, I did my own research and Beesie assisted me. There was no clear option. Basically 50/50 in all the research and I opted for radiation. But if I ever have a recurrence radiation may not be an option for me again. You still have this very effective option available to you. Again, I am so sorry you are back here, but so optimistic for your treatment. And you did everything you should have first time. ((((Hugs))))

  • Barbjc
    Barbjc Member Posts: 28
    edited April 2019

    TB90,

    Thanks so much for your support and encouraging words… It's incredible how helpful it is to be on the site and talk to other women who have been through this, nobody quite understands it as we do.

    And you're right, I should be thankful that I have radiation as an option... and grateful that I found the small cyst when I did and it didn't progress to anything invasive. Thankful and grateful seem like crazy words to feel right now, I could think of a few choice other words, ha!! but I am going to try to focus on thankful and grateful … Since I just found out yesterday I'm still angry and sad and shocked, you know the drill

    Of course my concern is how it's going to affect the implant because I've heard that it can cause problems ...however I will cross that bridge if and when I come to it. My radiation oncologist is one of the best and he said we will take it slow with radiation so it will not affect my implant.

    Hugs back atcha

Categories