Recurrence after bilat mastectomy?

Options
13567…38

Comments

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2009

    Sea_nymph - How did you detect the IDC? Did you get mammograms or MRI's after your mastectomy?

    · Share on FacebookShare on Twitter
  • rose847
    rose847 Member Posts: 27
    edited October 2009

    I just had a bilateral mastectomy a month ago and have gone in circles about treatment and how to manage followup. After talking to 4 oncologists all refused to use any kind of scanning. I could not even get them to agree to an MRI every 2 years.

    I just rec'd some information that I have not had a chance to read up on but would like to share. It's called a PEM Scan. I don't even know if this is available at all hospitals. None of the oncolgists told me about this. A friend saw it on a TV health report. The report stated it was being used to check for tumor recurrence in breast cancer patients.

    Full medical name is positron emission mammography(PEM). It is not a whole body scan but mainly for specific body parts. It can see cancers as small as 2mm. Most tumors have to be at least 1cm before they are seen on other scans. Now I do not know if this scan has a high false positive like a Pet Scan.

    I came to this site because I am worried that the doctors I talked to don't seem to have any means of checking for recurrence except by exam and often it is then very big.

    Good Luck to everyone here and thanks for sharing your experiences.

    · Share on FacebookShare on Twitter
  • Sea_nymph
    Sea_nymph Member Posts: 32
    edited October 2009

    Mykidsmon- I felt it. It felt like a beebee.

    -Sea-nymph

    · Share on FacebookShare on Twitter
  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2009

    Interesting. I assume that means it was close to the surface. Thanks. - Jean

    · Share on FacebookShare on Twitter
  • Abbey11
    Abbey11 Member Posts: 335
    edited October 2009

    Melody,

    The PEM scan is only available as part of a clinical trial.  I was fortunate enough to have enrolled in this trial at Johns Hopkins after my initial diagnosis.  I was planning to have a lumpectomy and radiation and then was asked to participate in the trial to test whether the PEM helped with pre-surgical planning.  It sure did!  Cancer was found in the other breast (nothing showed on the mammo) so I opted for a double mastectomy.  If I hadn't had this test, the cancer would still be in there...growing...

    · Share on FacebookShare on Twitter
  • cookiegal
    cookiegal Member Posts: 3,296
    edited October 2009

    PEM is available here in NYC. I had one right after positive biopsy. It's funny, because few have heard of it, even the nurse who took my history at Sloan.

    Manhattan Diagnostic Radiology. 212 838 4243

    I really don't think it's part of a trial since I had to pay plenty for it!

    · Share on FacebookShare on Twitter
  • JDScents
    JDScents Member Posts: 6
    edited November 2009

    I feel like I'm going to be sick...

    Nov 2008 I had a bi lat mast because of very painful fibroadenomas (sp) that kept needed to be removed. I was 23 at the time and after the fact I tested positive for DCIS in my right breast. They had no idea the cancer was there I have ZERO family history. It was ER+ but that is all I can remember, I had no lymphs removed because they weren't doing the surgery for cancer. They saved my nipples and some tissue under them to keep them natural looking. the past couple of days I have noticed a very hard lump under my right nipple. The same side the cancer was on. I've called my dr. but the specialist can't get me in till Dec 18th!!! So my PA is going to see me and possibly do an ultra sound. Should I be worried?? I didn't have any rads or take tamox because I was only 23. Cry I'm sooooo scared.

    · Share on FacebookShare on Twitter
  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited November 2009

    JD - I am so so sorry for all you are going through. I have no idea whether you need to be worried. But I know I would be. How soon do you see the PA?

    · Share on FacebookShare on Twitter
  • JDScents
    JDScents Member Posts: 6
    edited November 2009

    I called my surgeon and he's getting me in tomorrow morning at 9 for a mammo and ultrasound.

    · Share on FacebookShare on Twitter
  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited November 2009

    JD - What did you learn??

    · Share on FacebookShare on Twitter
  • JDScents
    JDScents Member Posts: 6
    edited November 2009
    Undecided The radiologist did the ultrasound on Friday and he said that the borders of it was ill defined. It would say that it wasn't a typical cyst or a fibroad like I was prone too...he just kept saying ill defined. You could def. see a milk duct and the weird spot was next to the duct. My surgeon is going to do a biopsy on Monday hopefully, he wants to do it in his office but doesn't want to do any false sampling. We'll see. I go in at 3:30pm...I'll keep you posted. I'm freaking out!!! He is hoping it's scar tissue but not dismissing the fact that it would be cancer again.  
    · Share on FacebookShare on Twitter
  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited November 2009

    (((JD))) I am sending healthy, b9 thoughts your way. Take care!!!!!!

    · Share on FacebookShare on Twitter
  • rose847
    rose847 Member Posts: 27
    edited November 2009

    The PEM Scan is available at 2 Chicago area hospitals. I am going to meeting with doctors who use it. Will post info after my appts.

    · Share on FacebookShare on Twitter
  • 450jcpl
    450jcpl Member Posts: 3
    edited March 2010

    Local recurrence after mastectomy is not so rare afterall.  I have also just discovered that I have a local recurrence.  I had a mx and reconstruction on 18 May 2007.  The U Sound done on 8th Dec 2009 showed a lump 1.8 cm.  Since I had already had done a mx, I thought it was just a cyst. On 10 Mar 2010, I went to see my Plastic Surgeon.  On exam the lump he told me I have a recorrence.  US biopsy confirmed it.  I am not sure now what is the next step.

    · Share on FacebookShare on Twitter
  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2010

    450 - Oh I am so sorry. Was your US in December just a routine follow-up or were you there for a reason? Did you have a palpable lump? When do you see someone to find out the next step? I am so sorry. Please let us know what you find out. We will be thinking of you!!! - Jean

    · Share on FacebookShare on Twitter
  • Merilee
    Merilee Member Posts: 3,047
    edited March 2010

    Hi Ladies

    I had a dbl Mx in 2/09 and had a recurrence in 11/09. Currently in chemo. Sucks as I thought the dbl mx was a pretty aggressive treatment. Not aggressive enough apparently. I did Tamoxifen for 3 months but had terrible side effects including loosing the hearing in my left ear. Did DIM and 13 C which apparently does not work either.

    · Share on FacebookShare on Twitter
  • 450jcpl
    450jcpl Member Posts: 3
    edited March 2010

    Mykidsmom, 

    Thank you for your kind reply.  My US in Dec 2009 was a routine followup.  I will be seeing the breast surgeon on Tuesday , March 16.  I am shock that even after mx and reconstruction, breast cancer can recur.  I thought after mx I will not suffer breast cancer again.  I will see what the doctor  suggest ...Surgery will affect my reconstructed breast.   Will post again.

    · Share on FacebookShare on Twitter
  • hollyann
    hollyann Member Posts: 2,992
    edited March 2010

    This is scary stuff..I too had a bilat mast to keep from having a recurrence and now I am reading that ER+ BC has a higher recurrence rate AFTER 5 years!>......WTH???......I am sorry all you ladies have had recurrence so soon.....I have had 2 scares which luckily turned out to be B9 but doens't mean it won't happen in the future for me.......I will keep you in my thoughts.....

    · Share on FacebookShare on Twitter
  • hollyann
    hollyann Member Posts: 2,992
    edited March 2010

    Bump

    · Share on FacebookShare on Twitter
  • nmi
    nmi Member Posts: 180
    edited March 2010

    bump

    · Share on FacebookShare on Twitter
  • malleme
    malleme Member Posts: 210
    edited March 2010

    Help I too had a bil mast 1/09 and Dr just called to tell me a marker is off.  I had a hysteroctomy D&C becasue in jan they found polpys in the endometrial lining from the tamoxofin.  I had only been on Tamox since sept 09.  I was all scheduled to get my port removed and the test came back not good.  So I am sceduled for a Pet scan and CT scan.on monday.  After chemo, herceptin for a year which I just finised one month ago I thought I was home free and ready to start living again.  I really did expect to have some time years before a reoccurance.

    · Share on FacebookShare on Twitter
  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2010

    Oh Malleme I am so so sorry. Please know that we are thinking of you and sending all kinds of wonderful thoughts your way!

    · Share on FacebookShare on Twitter
  • 450jcpl
    450jcpl Member Posts: 3
    edited March 2010

    here I am again.  I have to go for another surgery to remove the lump - has gown to 2.5 cm.  It is the mucinous carcinoma type.  Breast surgeon also suggested to remove all the lymph nodes.  I do not want to go through all the testing again - CT scan for thorax and abdomen and another one for bone scan.    I am not going through all this again.  I will see another surgeon tomorrow.

    · Share on FacebookShare on Twitter
  • lydrocks
    lydrocks Member Posts: 1
    edited March 2010

    I've been diagnosed with a local recurrence post mastectomy, and have started zoladex, and am starting rads tomorrow. I'm concerned about the state of my implant, which is cohesive gel, and has taken 4 years to get right.

    On another note, I had the lump for 4 years which progressively grew, and all my docs kept reassuring me was nothing...

     Anyone here doing rads and can give me some idea of what the results will be. I'm so tired of surgeries, and I know that the rads may damage the implant... 

    · Share on FacebookShare on Twitter
  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2010

    hydrocks - Estepp (Laura) has implants and is very happy to help anyone w/ rads. She is on bc.org a lot, feel free to PM her. I am sending my best to you! Hugs!!- Jean

    · Share on FacebookShare on Twitter
  • Estepp
    Estepp Member Posts: 6,416
    edited March 2010

    ldyrocks...

    SS you are facing this..

    If you want to talk about this in detail. Send me a Private Message with your questions....

    ( just click my name and then click.. send member a private message)

    · Share on FacebookShare on Twitter
  • Trishia
    Trishia Member Posts: 572
    edited March 2010

    Well hell.  Yesterday I found a lump...feels like pea or a bb..right above my scar line from DIEP.  I  am  17 years out from original dx. UGH.  My stomach dropped when I felt it.  Just like it did when I found my first one, my second one and my son's cancer.  Hoping it is nothing, but my gut is telling me otherwise and it has never been wrong when it comes to cancer. 

    I had high grade DCIS with micro-invasion that was attached to the chest wall in 1992.  Mx and radation.  DCIS in right breast 7 months later. Mx then..no other treatement.  I was 21 and pregant first dx.  Refused tamoxifen based on being 21 and the risks associated with early menopause.  I have Li Fraumeni Syndrome, which is a genetic disorder that makes you prone to cancer.  Apparently ppl who have Li Fraumeni are supposed to limit their radiation exposure.  So the lump is on the radiated side.  

    I will call my doc tomorrow.  And put a call into the BS.  What's doubly effed up is that my sister just had a nodule show up on her MRI.  Had her US and mammo on Friday, showing a complex cyst that she has to have biopsied as well.  She doesn't have my genetic disorder.  However, my mom and grandmother both had BC as well, so now they are wanting to test for BRCA.  What are the chances of having 2 cancer causing gene mutations?  UGH.  

    · Share on FacebookShare on Twitter
  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2010

    (((Trishia))) We will be thinking of you. Hugs my dear!!!! I am sending all kinds of good vibes your way!

    · Share on FacebookShare on Twitter
  • hollyann
    hollyann Member Posts: 2,992
    edited April 2010

    hugs, Trisha.......Hope all goes well with the biopsy,,,Will pray for B9 results.......This just sucks that even after we are treated we have to always worry about recurrence.......i am the 5th in my family that I know of to have bc, yet we don't carry the BRCA genes......I lost my mother, my grandmother, and my sister, Charity to this disease and I and my sister Fran are surviovors...We were diagnosed 5 months apart from each other.......Does it never end????..........

    · Share on FacebookShare on Twitter
  • nmi
    nmi Member Posts: 180
    edited April 2010

    I have a question, I had diep flap at the end of Oct. Is it possible to have recurrence in the breast reconstructed with ab. tissue?  I did have skin saving, nipple sparing mx. I have noticed a small protrusion (pea size), close to nipple (not touching), it is not on incision.  Probably scar tissue. right! It is noticable just by looking at my breast.  I did make an appt w/dr. but I feel like I am over reacting. Any thoughts?

    · Share on FacebookShare on Twitter

Categories