DCIS, double mastectomy, now two cysts

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GreenMonkey
GreenMonkey Member Posts: 666
edited November 2014 in DCIS (Ductal Carcinoma In Situ)

Hello Everyone, I was very active here once upon a time and then I got side tracked with rectal cancer. I am so beaten down at this point.  I had a double mastectomy in March of 2012 so that I wouldn't have to THINK about cancer again. So that I wouldn't need to do chemo or radiation and then BAM, after a routine colonoscopy, with no family history of cancer of any kind, I am diagnosed with rectal cancer. Nothing says horror quite like internal, high dose, rectal radiation and then having your rectum and sigmoid colon removed and having to have an ileostomy and carry your shit in a bag. Oh and then at the start of the rectal cancer my husband checked out. Anyway...Tomorrow is my final round of oxaliplatin followed by two weeks of xeloda. My rectal cancer is advanced and they are watching two area's on my lungs to determine if it has metastasized.  And now I have not one but two cysts. As much as my story sucks I still have quality of life. I still smile. I still try to remain positive. I still keep looking for answers.  So, dear cancer friends... has anyone had DCIS, had a mastectomy and then had a cyst that turned out to be more cancer?

Thank you for being here.... xoMonkeyME  

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  • Ariom
    Ariom Member Posts: 6,197
    edited March 2014

    Hi GreenMonkey! I can't answer your question, but just wanted to say hi since you haven't had any replies yet. It can be a bit quiet on the weekends here. I am in Australia, so it's just about dinner time here.

    I am so sorry to hear all you've been through, it has been a really rough time for you, but you sure have a great attitude which will always stand you in good stead.

    I wish you all the very best and I am sure there will someone along who can answer your question. 

    I would be very interested to hear how you get on...Take care, and know that you'll never be alone, come here and get support and information!

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  • LAstar
    LAstar Member Posts: 1,574
    edited March 2014

    I'm so sorry to hear that you have gone through so much.  You have a great attitude, but you can feel totally justified in being fed up with all of this!  Hopefully the cysts are nothing at all.  I have two that have popped up since my BMX in 2012, and I noticed several other ladies on the board who'd had MX around the same time that also mentioned it.  I had an MRI and my breast surgeon determined that they are just oil cysts.  He thought they were caused by some necrosis that came up after my reconstruction, but I read online that they occur often after breast injury.  BMX certainly counts as breast injury.  None of the other ladies that mentioned it had anything of concern with theirs either.  So hopefully, we are just part of the cohort that gets cysts right now and there is no problem.  Of course, it's good to have them examined to be able to forget about them and focus on other things.  Sending you big hugs and hopes for clear lungs.   

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  • faerywings
    faerywings Member Posts: 173
    edited March 2014

    No advice, whatsoever, but sending you hugs ans strength

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  • jill47
    jill47 Member Posts: 351
    edited March 2014

    Oh GreenMonkey....I remember you and even dialogued with you here on bco when we were both going through bmx/recon in 2012. I'm am so, so sorry about you new cancer, treatment and outcome.  Not fair and too close / too soon from bc dx.  My heart and prayers are out to you.  I have no help to offer with the cysts, all of this is so scary.  Hugs, Jill

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  • GreenMonkey
    GreenMonkey Member Posts: 666
    edited March 2014

    Thank you for responding I have a core needle biopsy scheduled for monday with results due back in two days. Chemo makes me crazy.

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  • ballet12
    ballet12 Member Posts: 981
    edited March 2014

    Hi Green Monkey,  I remember you well from your previous postings and your escapades at MSK.  I am so sorry for what you are going through, both physically and emotionally.  It certainly puts our situation (dcis) in perspective.

    I hope you recover well.  Interestingly, my brother-in-law is a colorectal surgeon, and when I discussed getting breast radiation, he asked why I would do that since radiation is so harsh.  Of course, what he knows is the kind of radiation that you received in your treatment.

    I hope the cyst thing is nothing, but after what you've been through, you obviously don't trust your body anymore.

    As with the others, my heart goes out to you.  Let us know what comes of the biopsy.

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  • GreenMonkey
    GreenMonkey Member Posts: 666
    edited March 2014

    well.... the silence is comforting. Of course no one with DCIS and LCIS had a reoccurrence after a double mastectomy...right?  It's just crazy. They're planning on doing a core biopsy now. I wish the lumps were not right where my LCIS biopsy was. I WISH I could believe that I am cancer free. 

    And... as crazy as this sounds, I feel like sloan is out to get me. I had an MRI and a CT at Sloan, Yale, and Johns Hopkins. Yale and Johns Hopkins said no lymph node involvement and no mets to lungs or liver (where rectal cancer goes). Sloan said 2 to 3 positive nodes AND spots on lungs that can not be biopsied (too small and in a difficult spot) but must be treated as cancer with chemo, upfront, before addressing the known rectal cancer. Yale said that was "dangerous" and Johns Hopkins said that "it is highly unlikely that the spots on my lungs are cancer"...  Needless to say, I did not take sloan's advice but their test results and interpretation of tests haunt me CONSTANTLY. 

    Yes, I complained about my lost breasts until I had to start carrying my shit in a bag - sort of like the man who complained he had no shoes until.... but still, I don't ever want to degrade, devalue, diminish, etc, anything DCIS/breast cancer people are going through. It all sucks. Thank you for welcoming me back. 

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  • hopedreams
    hopedreams Member Posts: 85
    edited March 2014

    Hi Monkey.. I do remember U & also read about your HORROR at MSKCC with the PS..I also read parts of your blog..Sorry about the other cancer as well..I cant imagine how rough that has been on U..But I do have a question for U..I also had DCIS stage 0 in 2011..Had mastectomy only 1 breast.. I recently went back to PS for my 3 yr check up..He told me to come back in 2 yrs for the MRI.. He said my implant /foob was perfect !! I was kinda shocked that they wait so long to check out that breast/or shall I call it The area?  for cancer..He said It happens after 5 yrs..Is that what U were also told?  Well at this moment.. I have what I think are cysts again in my good boob??  I had same pain last yr..same spot & had needle aspiration..NOT cancer There were 2 big cysts near each other. deflated them....I go again in April  for my yrly mammo & check up with breast surgeon. I'm now a  nervous wreck. My question is..Did U feel these cysts with your implants in?? or how was it found? Also  I thought cysts were NOT cancer?  I'm confused.. p.s Also a patient at MSKCC..and have been very happy with my Dr.s there.  [ not the same PS that U had ] thank GOD. Hang in there and please keep smiling..

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  • GreenMonkey
    GreenMonkey Member Posts: 666
    edited March 2014

    Hi Hope.... My cysts turned out to be B9 but not all are, but most are. I was told the cyst looked "unusual" on ultrasound. Plus, because of my cancer history they did the aspiration. I also needed piece of mind. It seemed odd to have two cysts with a breast that the tissue had been removed. (one cyst was large - both could be felt, one was clearly seen)

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  • jill47
    jill47 Member Posts: 351
    edited March 2014

    Yippee GreenMonkey, that is some good news but none the less that was a scare with lousy timing.  Thinking of you with your new ca treatment.   Fondly, Jill

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  • GreenMonkey
    GreenMonkey Member Posts: 666
    edited September 2014

    Hello Everyone, I haven't been on here in a very long time. I finally had my surgery on Tuesday 9/23, to remove the  2 cysts. My local breast surgeon (not the MSK surgeon) was concerned there was tissue remaining, possibly in both breasts so I opted to have exploratory surgery while having the cysts removed and then get new implants (a tad bigger and different shape) and fat grafting - using belly fat.  

    I must have said this before but.... the breast cancer board is sooooooo much better than the colorectal board. In many ways.

     I've lost too many board friends there and I am only one of 3 people I know blogging about rectal cancer that is still alive :( 

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  • ballet12
    ballet12 Member Posts: 981
    edited September 2014

    Good to hear from you, Green Monkey, and hoping that your latest pathology report will show that everything is benign.  You have been through so much.

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  • hopedreams
    hopedreams Member Posts: 85
    edited September 2014

    Hey..U are one very brave lady..Hope all went great with this recent surgery..and I pray this is the end to your surgeries.. geesh..U had enough. woo hoo boobs a tad bigger..that's a plus..Please take good care of yourself..and take it easy !! I'm so happy to see U back in bc.org.. Smile  Hugs..xoxo Hope

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  • rosemamma88
    rosemamma88 Member Posts: 22
    edited October 2014

    Green Monkey,

    I just happened to see your post.  I know your original post was from March asking if anyone had DCIS with a bi-lateral mastectomy that had a recurrence.  THAT IS ME.  I know you recently had surgery to remove the cysts, and I don't know what the final report came back as, but I am currently going through chemo for the invasive cancer they found and diagnosed this past May.  I thought I was done with breast cancer since I had a bMX.  but it turns out some was left behind I believe.  so I just wanted to chime in and say it does really happen.  I wouldn't have believed it myself, but I had some pain which caused me to feel a lump in the same vicinity as the original DCIS area.  They say it only happens to 1-2%  so I guess that's me.

    hope you're doing well.

    Debbie

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  • hopedreams
    hopedreams Member Posts: 85
    edited October 2014

    hi again Monkey !!!  I was so happy to see U back in bc.org.  I was hopping that U would let us know how U are feeling now..& kinda keep in touch??  well I know U must be busy with LIVING YOUR LIFE.. & thats a good thing. Smile. hugs  & thinking about ya.. ~ Hope

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  • 2young4it
    2young4it Member Posts: 3
    edited November 2014

    hi - I have 2 lumps that I found on mastectomy side (single mx April 2013) above left breast near armpit. Found one 6 months ago and it can be seen poking out of skin. Other is smaller but near. 1st ultrasound 6 months ago showed mass with smooth edges so surgeon only recommended a follow up in 6 months. Yesterday was the 6mo follow up and the larger has slightly reduced in size although feels and looks the same to me and now has fluid inside. Small one is all fluid. Radiologist and Surgeon recommend another 6 month follow up. Makes me nervous to leave these in and why another 6 month follow up?? I would prefer to just removed them. Anyone else have something similar? Should I be concerned of a reoccurance?

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