dx with local recurrence have some questions

Options
evyl78
evyl78 Member Posts: 70
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I was dx with a local recurrence almost exactly 4yrs and 1 month from original dx.  I did a/c+th the 1st go around followed by 35 rad treatments. I celebrated my 4yr on Oct. 3rd and went for my 6 month with my rad onc.  well that started the lastet in my cancer journey.  I had a lump on mast scar line that me and my med. onc thought was scar tissue.  He wasnt so sure and asked her to look and feel again (good thing)!  She said to have it removed.  Saw my surgeon who <3 him got me in the next day to have it removed.  Turns out it is back  and was a 3cm mass with unclean margins. He reopend last Thurs. to clean up and also put in port.  Still not sure on treatment plan will hopefuly know on Thurs.  but was wondering if anyone was in my boat or had been!  I mean with mast, plus chemo & rads I figured the left side was all clear :( just overwhelmed and not knowing which chemo she is giving me is driving me nuts!! I hate the waiting and not knowing!!

· Share on FacebookShare on Twitter

Comments

  • lovetosail
    lovetosail Member Posts: 544
    edited November 2011

    Hi Evyl18, sorry to hear of your recurrence!  I am sure this is really a shock to you after such a comprehensive original tx and 4 years!  I also recently had a localized recurrence - mast + chemo (no rads originally) and I recurred almost exactly where the original tumor was ~1.5 years after the mast:  ~1cm mass with clean margins.  I'm in the middle of rads and will get Herceptin for a year.  So I'm not exactly in your boat but am floating nearby ;)

    I see you're HER2+ so unless your new tumor is HER2- I imagine you'll get Herceptin again.  Make sure they test the tumor for ER/PR/HER2 status!  Did they scan you to rule out distant recurrence - I received bone scan, PET/CT and breast MRI.

    Good luck, and let us know when you have a tx plan in place!

    Sue

    · Share on FacebookShare on Twitter
  • epgnyc
    epgnyc Member Posts: 101
    edited November 2011

    Hi, Evy. I feel badly you';re having to go through this again.  My situation was not exactly the same as yours since my doctors called mine a 2nd primary in the same breast rather than a recurrence.  I was triple negative the first time I had BC in 2002 and was again this 2nd time (diagnosed in 2/11) and with TNBC they statistically determine that if the recurrence in the same breast occurs more than 6 years later, it will be considered a 2nd primary.  This is because TNBC is so aggressive, they feel it's impossible to be the same cancer to occur that much later.  In any event, the new tumor was in exactly the same place as the first, in fact was intertwined with the scar tissue from the original lumpectomy.  The first time it was a 1.7 cm. tumor for which I had a lumpectomy, re-excision to get better margins, 8 CMF treatments every 3 weeks and radiation.  This time the tumor was 4 cm. and I had a BMX with chemo again (AC + T, every 2 weeks).

    With HER2+, I agree you'll no doubt be having Herceptin but who knows which other chemo drugs they'll choose.  I finished my chemo back in late August and am already feeling much better.  You've proved you can get through this once and no doubt you will again.  But I agree the waiting and not knowing is one of the hardest parts.  Hang in there and best of luck to you.

    · Share on FacebookShare on Twitter
  • evyl78
    evyl78 Member Posts: 70
    edited November 2011

    Thanks ladies, I know I will have herceptin and also chemo I just had port placement last Thurs. when they went back in to try to clean up I guess you could say.  Bone & Ct was clear  I do my Pet on Tues.  I'm hoping that tomorrow I get a treatment plan because this doing nothing is not working for me and not knowing well I am a NEED to know type person.

    Sue-glad you are almost done with rads. good luck

    EP-Thanks and see thats how mine was it was in the exact same location very weird.  Anyway good luck

    · Share on FacebookShare on Twitter
  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited November 2011

    Hi Evy178.

    I hope and pray that all goes well for you.  I saw my GP on Thursday and she cried.  I saw an Oncologist the day beforehand and she told me they have stopped herceptin because it obviously hasnt worked!  I left there feeling abesolute hopeless and feeling like I needed ot prepare my family for goodbye!

    But seeing this forum and the posts of many women who are in similar circumstances (and are still here to tell the story), I will get the recurrence remved this week 9with a smile), treatment (whatever it may be) and look forward to the future with my darling family.

    · Share on FacebookShare on Twitter
  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited November 2011

    HI,

    I'm in a daze after going to my Onc yesterday for my checkup.  It has been one year since I got on this local recurrence merry go round and so I thought I would ask some questions.  When the ILC came back in the same breast I had to have a blmx, chemo and now arimidex. My BS told me during my last visit that they don't like to stage local reccurences but that I was a Stage 3 if I needed to know.  When I asked my onc yesterday for the first time he said I'm stage 4 even though it is not in my nodes and all my scans were clean.  He said all recurrences are Stage 4 but mine was the best kind to have because I have a 50 percent chance that it won't come back and a 50 percent chance that it will kill me.  WTH!!!! Nice way to ruin an otherwise wonderful Thanksgiving with my family.  I have read about BC for 5 years now and never read where all recurrences whether, local, regional or distant are stage 4.  I'm going to look for  different oncologist.  He is really making me wonder if he is the right doc for me.  I think he is overworked and doesn't spend enough time on each individual patient.  If anyone has any advise or heard of this, please let me know.

    Thank you,

    Nancy

    · Share on FacebookShare on Twitter
  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited November 2011

    Hi LovetoSail,

    Just wondering if you had Herceptin before the recurrence?

    My Oncologist stopped Herceptin because she said it isnt working.  I asked more questions and she has deffered to another Oncologist.  I am moping that this is NOT the case.

    · Share on FacebookShare on Twitter
  • nancyh
    nancyh Member Posts: 2,644
    edited November 2011

    Dear evy178,

    I also had a local recurrence nearly 5 years out from my original dx, right in the same spot exactly like you are describing.  My advice to you is hit it over the head, with the biggest hammer you can find.  With my local recurrence I decided on bi-lateral mastectomies and 6 months of CMF.

    Sorry if I missed this, but are you already taking herceptin?  It can be a miracle drug in many cases and women can take it for a long time with few ill effects.  Also, I'm curious, you are ER- but PR+.  Are hormone therapies an option for you?  If so, might be good to follow up with that after whatever chemo is decided. 

    Best of luck to you!  Warm hugs,

    NancyH 

    · Share on FacebookShare on Twitter
  • evyl78
    evyl78 Member Posts: 70
    edited November 2011

    HI Nancy I would run to anohter onc.  I have never heard that my understanding is as long as it has not spread from original area then it is not stage.

    NancyH Yes I was on herceptin I did the weekly rounds.  My path on the  st one is ? because I was pregbant at the time.  The path on this one is 18% er+ not sure the pr but know it is + as well as her2++  waiting is hte worst I just want to have a treatment plan and an end goal in mind yk

    · Share on FacebookShare on Twitter
  • nancyh
    nancyh Member Posts: 2,644
    edited November 2011

    Dear Evy,

    Waiting is the worst, I agree.  Keep us posted when you get a treatment plan.  Big hugs to you,

    NancyH 

    · Share on FacebookShare on Twitter
  • evyl78
    evyl78 Member Posts: 70
    edited November 2011

    Hi just talked to onc petscan is clean so we will go with TCH not sure how many rounds I have to go in tomorrow at 430 to talk to her about that. 

    · Share on FacebookShare on Twitter
  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited November 2011

    Wishing you the best xox

    · Share on FacebookShare on Twitter
  • netty46
    netty46 Member Posts: 296
    edited June 2012

    Hi Everyone :

    My world is crashing down. I just found out local recurrence. I got the call 2 hours ago. My breast was full of necrosis, calififications, junk. He went Monday and now he calls that its a high grade 3cm that was found amongs all this.  Let me tell you all I had a Diep Flap in this breast in 2005.

    Anyone has this experience?  what will be done?  The did a Stat Cat Scan on me Before surgery and that did not even show cancer.  Chest was clear and no swollen nodes. 

    I am walking around like a zombie. Helpppppppppp 

    · Share on FacebookShare on Twitter
  • wallycat
    wallycat Member Posts: 3,227
    edited June 2012

    I am sorry to hear about anyone dealing with recurrence.

    I had found something on my scar line and had my onco 6 month (5 years out) visit on Wed..asked her to inspect it.

    Also asked her if it were a recurrence, what would we do (I have posted a thread here asking what people are doing).

    She indicated they would remove it and do rads...no chemo.  I was shocked.

    She looked at it and decided it was nothing to be concerned about (most likely a mole--I am very moley :-/  ) so I guess I wait and see next year.

    · Share on FacebookShare on Twitter
  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2012

    netty, I'm so sorry to hear about your recurrence.  What a shock after 5 years!  How have they dx'd what's going on?  Have you had a biopsy yet?  And I'm curious what sort of followup you've had in the past 5 years --  annual mammos?  MRIs?

    I have no idea what tx will be recommended for you, but as upsetting as it must be, I'm at least grateful for you that it's still a local recurrence and hasn't travelled anywhere else...  

    Wallycat, do you think maybe you should also show that area of concern to your BS?  I guess I would feel more comfortable if he/she also said it was nothing.  If it's very small, they might just take it off and biopsy it, just to be on the safe side, which would also help you not continue to worry about it.     Deanna 

    · Share on FacebookShare on Twitter
  • wallycat
    wallycat Member Posts: 3,227
    edited June 2012

    Deanna, my breast surgeon is in Wisconsin.  When we moved here, I never looked for a new surgeon (and hope I never need to!).

    I remember the little mark being there (it looks like aktinic keratosis to me) from the beginning.

    I'd like to think they know what they are doing and am trying not to think much about it.  I've been watching it 

    since my bilateral mx and nothing has changed.  I was surprised the surgeon left it there (lumpectomy, then mx) and he said he was trying not to create a second scar and work with the one there.  Since I was very large breasted, I suppose they did what they had to.  If it changes or anything, I will get it biopsied right away.  

    My onco has been doing this for 18 years, so I would like to think she as seen it all.  

    · Share on FacebookShare on Twitter
  • wrsmith2x
    wrsmith2x Member Posts: 410
    edited July 2012

    I had a local recurrence also and have been re-reading through my path report and found out that I had two discrete masses.  No one mentioned that to me before.  The larger one was the one they told me about that was under and included the nipple and the second, smaller discrete mass was deeper next to the skeletal muscle.  I am so surprised no one told me about this one.  And now I have started having the same kind of pain that I had before they found the latest tumor.  A deep pain, deep in my breast (reconstructed).  I guess if they left some cells near the skeletal muscle that it could grow there again?

    I am really angry that they didn't tell me about this.  Anyone else had an issue like this? 

    · Share on FacebookShare on Twitter
  • tibet
    tibet Member Posts: 545
    edited July 2012

    wrsmith2X,

    May I ask, if the two masses they told you of from the second dx or from the first dx path report they did not tell you of?

    · Share on FacebookShare on Twitter
  • tibet
    tibet Member Posts: 545
    edited July 2012

    hi Netty46

    Did you have a lumpectomy first dx? What kind of follow up did you do during the 12 yrs since the first dx? thanks.

    · Share on FacebookShare on Twitter
  • wrsmith2x
    wrsmith2x Member Posts: 410
    edited July 2012

    Tibet, 

    They were from the 2nd diagnosis.  And since then my mother, husband and friend have all told me that I knew about the two tumors....I really don't remember so I guess I was told when I was out of it or the pain meds made me forget.  Weird, huh? 

    · Share on FacebookShare on Twitter
  • netty46
    netty46 Member Posts: 296
    edited August 2012

    My oirginal cancer was in 2000 triple negative

    · Share on FacebookShare on Twitter
  • netty46
    netty46 Member Posts: 296
    edited August 2012

    what chemo did you get for your first cancer? I had a diep flap also in 2005. I was first diagnosed in 2000. I had CMF chemo.  Now on 6/18 they removed a tumor from my recosntructed breast.  Curious to what cehmo did they give with recurence and what did they say.

    · Share on FacebookShare on Twitter
  • netty46
    netty46 Member Posts: 296
    edited August 2012

    Hi  EGny  I have sent you several messages but maybe I am not sending them the correct way.  I also am TN and had recurrence this 6/18.  I am on C/T now.  In 2000 when I with my first cancer I was treated at Sloan Kettering and also got CMF.  So how is everyhting now?  They keep telling me recurrence . All people that hear are shocked they say impossible after 12 yrs has to be new.

    Did they offer Rads again?

    · Share on FacebookShare on Twitter
  • wrsmith2x
    wrsmith2x Member Posts: 410
    edited August 2012

    I couldn't tell if you were asking me about chemo for 1st cancer so if you weren't, I'm sorry.  I had Taxotere/Cytoxan the first time and refused chemo the second time.  

    Also they can't radiate a breast that has already been radiated or reconstructed (unless you lose the implant).

    All recurrences are shocking no matter how short or how long between diagnoses.  I wish you well.  Namaste'. 

    · Share on FacebookShare on Twitter
  • netty46
    netty46 Member Posts: 296
    edited August 2012

    You 4 rounds of taxotere and cytoxin or 6?

    · Share on FacebookShare on Twitter
  • netty46
    netty46 Member Posts: 296
    edited September 2012

    Yes I heard the same from one oncologist but the others said stage 2 b

    · Share on FacebookShare on Twitter
  • wrsmith2x
    wrsmith2x Member Posts: 410
    edited September 2012

    Four rounds of tc for me. Refused chemo with recurrence after BMX.

    · Share on FacebookShare on Twitter

Categories