Another newly dx'd DCIS here :)

Options
faerywings
faerywings Member Posts: 173
edited June 2014 in Just Diagnosed

Hi ladies!

I was diagnosed a little over a week ago with the "good" kind of breast cancer. It is Stage 0, DCIS, and apparently caught very early. This was my second biopsy done in the same area, but the first time the result was benign calcifications. Not so lucky this time around, but still lucky in the Grand Scheme of Things.

I have been trying to stay off of websites until I have more info, but this one was linked from the surgeon I will be seeing next week. (Little aside: I was supposed to go to see the surgeon last week, but the day of my appt, a pipe burst in the office and I had to be re-scheduled. How fun is that? LOL!!). This site seems to be very low key/low drama which is what I need.

A little more background about me is that I am 45, have 2 awesome teenagers, and a fabulous hubby-- and a super-insane but totally amazing extended family. I am very blessed. Thank goodness, b/c the health issues we have been dealing with  are Late Stage Lyme Disease since all 4 of us were diagnosed in 2008. Hubby is disabled from it. My kids have a lot of issues too, as do I. So the DCIS in some ways seems to be just one more freaking bump in the road.YKWIM?

Everyone is asking me how I am holding up but I really  don't know. Not sure if that is a good things or not, but I really don't feel *anything.* In some ways I feel like my diagnosis is not even "real cancer." The dr who did my biopsy told me that I would need surgery, of course, but not much other than that. 

So, I am gonna post this and poke around a little bit more.

Thanks  for reading my goofy little intro.

Chris aka faerywings

· Share on FacebookShare on Twitter
«1

Comments

  • Janet456
    Janet456 Member Posts: 507
    edited January 2014

    Hi Chris

    Sorry you find yourself here but know that you will be just fine.  My doctor said it was the best end of the worst news - which about sums it for me.

    I was lucky and just got away with a lumpectomy.

    Wishing you well.

    Janet x

    · Share on FacebookShare on Twitter
  • lovestorun
    lovestorun Member Posts: 167
    edited January 2014

    Hi Chris aka FaeryWings.  I'm sorry that you found your way here, but I hope you'll find these boards useful.  I am coming up on the one-year anniversary of my DCIS diagnosis.  Looking back, a year later, yes it was good bad news .  But it was still a scary and confusing time, particularly in the beginning.  Don't be afraid to ask questions!  My unsolicited advice is to bring a notebook with you to all appointments and write things down, and to get a calendar to keep track of all of your appointments.  It can be very hard to process what you are hearing when you are the patient.  I was fortunate to have a good friend go with me to my appointments in the beginning.

    Lumpectomy + radiation + tamoxifen was an option for me and that's the route I chose.  It meant I had appointments with four different kinds of docs - radiologists for imaging, biopsies and a pre-surgical procedure, a surgeon, a radiation oncologist, and a medical oncologist.  I was fortunate - my surgeon did a wonderful job and my scar has healed very nicely.  Radiation was not a terrible-awful-no-good-very-bad experience.   Tamoxifen has not been bad thus far. 

    One year out I feel like "me" again.  Good luck. 

     

    · Share on FacebookShare on Twitter
  • AZ85048
    AZ85048 Member Posts: 2,613
    edited January 2014

    faerywings - Welcome to the sisterhood!  So sorry you have to join us, but I think you'll be glad you did.  The boards and the women (and men) on them are a wealth of information.  Wishing you a safe and easy journey through the land of BC.  Please let us know how you're doing along the way... 

    · Share on FacebookShare on Twitter
  • marie5890
    marie5890 Member Posts: 3,594
    edited January 2014

    Faery wings, it's all "good"…not what you wanted, but certainly not the worst of news…

    Take the "good", learn and educate yourself, and make informed decisions…and make sure you LIVE LIFE!!

    Many, truly many, would give their eye teeth for the diagnosis  you have. Never ever loose site of that factual reality.

    · Share on FacebookShare on Twitter
  • faerywings
    faerywings Member Posts: 173
    edited January 2014

    thank you for the warm and supportive welcome!

    I will take any advice I can get. I already do the notebook thing, since everyone in my family has intense Lyme dr appt's. I literally have calendars posted on my fridge for my kids medications schedules. Add in my cognitive/neuro issues from Lyme and if it is not written down, it is *whoooosh*-- Out of my head LOL

    Unfortunately the Lyme has also messed up my endocrine system and my biopsy showed E+/P+ (100% for both) which is great news except that I don't know how that will affect my treatment of both medical issues. Plus I am prerimenopausal and was thinking about going on an IUD to help control the horrible, painful periods I am having, but now that is out of the question too. argh!

    I guess my head is swimming with questions and I am not feeling very patient in waiting for answers

    · Share on FacebookShare on Twitter
  • Annette47
    Annette47 Member Posts: 957
    edited January 2014

    Another welcome to the club no one wants to join!  

    I hear you about the perimenopausal  yucky periods issue, but for me, Tamoxifen has really helped with that (they are lighter and less frequent than they had been - pretty much back to how they were before I started with the perimenopausal symptoms), so if they approve you to take it, maybe you will be lucky as well ...

    · Share on FacebookShare on Twitter
  • JanOnancock
    JanOnancock Member Posts: 2
    edited January 2014

    My diagnosis is exact in R breast.  I have seen the surgeon and have chosen a BMX because I don't want to deal with a recurrence .  I am 60 and in great health an want to stay that way for a while.  I am waiting for the appointment with the plastic surgeon.

    · Share on FacebookShare on Twitter
  • Ariom
    Ariom Member Posts: 6,197
    edited January 2014

    Hi Jan, so sorry you have to be here.

    I had the same Dx, just over a year out from surgery, I had a Umx, and doing well.

    I wish you all the very best, and look forward to seeing how you're doing.

    · Share on FacebookShare on Twitter
  • AZ85048
    AZ85048 Member Posts: 2,613
    edited January 2014

    JanOnancock - Welcome!  I see that you've already met the lovely Ariom.  She's a peach!  It sounds like you're very comfortable with your choice and that's great!  I had a BMX back in August of 2013 (Lord, that seems like such a long time ago...) and just went through exchange surgery the day after Christmas.  And I'm doing just fine so far.  Please let us know if you need any help or have any questions.  There's always someone around here....

    · Share on FacebookShare on Twitter
  • Ariom
    Ariom Member Posts: 6,197
    edited January 2014

    Hi AZ, Lovely to see you!

    I can't believe it has been that long since your surgery! I remember when it was happening. Mine was 13 months ago, I just went for my 2nd Follow up, with my Surgeon and I've had my first mammo. All clear!!! Phew!!! But I can't believe how time flies.

    Remember back to the waiting for tests and biopsies, we thought the waiting would never end!

    I am, however, having a revision done to remove my "Dog Ear"/"Angel Wings" on the 18th of Feb. I was hoping it wouldn't continue to be a nuisance, but having to constantly check, and tuck that little sucker in, is not how I want to spend my Summers.LOL

    I am glad to see you're doing so well, take care! 

    · Share on FacebookShare on Twitter
  • faerywings
    faerywings Member Posts: 173
    edited January 2014

    Hi Jan, sorry to hear of your dx.  Many good thoughts to you for your surgery.

    Ariom, what is a a umx? Lumpectomy? I have spent so many years and years on Lyme disease forums that I know all of their "code"  but am still learning the ropes on the BC bd. ;)

    I know it is  a week away, but the weather forecasters are talking about a snowstorm for the 5th which is my rescheduled appt. And if that gets cancelled-- well-- *insert huge temper tantrum/meltdown smilie*

    Annette, where in NJ are you? I am wayyyy up north, in Bear Country :)

    · Share on FacebookShare on Twitter
  • Ariom
    Ariom Member Posts: 6,197
    edited January 2014

    Hi faerywings, Umx is a unilateral, or single mastectomy.  I am what some call, a right side Uniboober!

    I have been watching your terrible weather patterns on our News services. We are having a heat wave and terrible fires.

    I hope you don't have to reschedule your appointment...fingers crossed for you!

    · Share on FacebookShare on Twitter
  • Annette47
    Annette47 Member Posts: 957
    edited January 2014

    Hi faerywings - I'm down in Mercer County .... by bear country do you mean Warren County?  I have a friend up in Sparta - it's beautiful up there!

    · Share on FacebookShare on Twitter
  • faerywings
    faerywings Member Posts: 173
    edited January 2014

    Uniboober! I like that!!!

    Annette- Passaic Cty for me, right on the NJ/NY state line. And yes, Sparta is beautiful:)

    · Share on FacebookShare on Twitter
  • mitzihalvy
    mitzihalvy Member Posts: 1
    edited February 2014

    Hi, My diagnosis happened very quickly. I was going to schedule my regular yearly mammogram when the scheduler asked if I had any "symptoms", which I had been having for several months. Lets preface that with the fact that I had been diagnosed with a cyst in dec. of 2010, normal mamos the next 2 years but this year there was a larger area. Being a nurse I was able to get into my medical records and read the ultrasound and mammogram results. The words neoplasm and metastatic jumped out at me. I didn't get too alarmed because it hd always been a cyst. The surgeon said one has nothing to do with the other. So after several test and surgeon visits I was diagnoses with stage 3 invasive adenocarcinoma of the left breast with mets to the lymph nodes. The tumor itself measured over 4cm so I needed to begin with chemo. My first dose was Jan, 8 2014,, less than one month from the mammogram. 

    My husband has been great, my kids are all grown with one living at home yet. I have 6 total rounds of chemo then surgery then radiation and tamoxafen. I have a great outlook, I'm not going anywhere. my biggest desire now is to get back to work. I haven't been able to work since chemo but I had bad side effects which I didn't realize was not normal until I went back to day and had a liter of fluids. Now I feel a lot better and hope to get back to work tomorrow for short periods. I hope to find laughs and support on here from those going through similar situations.

    All the best to everyone, we are all in this together.

    thanks Mitzi

    · Share on FacebookShare on Twitter
  • AZ85048
    AZ85048 Member Posts: 2,613
    edited February 2014

    mitzihalvy - Welcome, Mitzi!  So sorry you've had to join us here in the 'hood - the sisterhood - but you couldn't have found a better place for support, questions, and yes, even a good laugh!  We all hope you'll find comfort and knowledge in these pages and from the women (and men) who wrote them.  Please let us know how it's going for you!

    · Share on FacebookShare on Twitter
  • Strongerthanithought
    Strongerthanithought Member Posts: 4
    edited February 2014

    hi Chris,

    I too am sorry you are finding yourself in this new "club". Not one any of us would choose to join but such an elite group of phenomenal women once your here you know you are in great company.  First of all I'm 40, have 3 children and a single mom.  I was dx with dcis in October 2013.  Everyone said "oh dcis, that is the good kind if you have to have bc."  That made me feel like I did not deserve to be scared or seek support from breast cancers groups because I did not "really" have bc.  I share that only to let you know that dcis is real and you are allowed to feel everything you may feel as you walk this journey and also to encourage you to seek support from your local breast cancer support groups long before I did..... 4 weeks after surgery...ugh!  If only I had known all the benefit.  Anyway, my dx was dcis of my r breast, there were diffuse lesions through out 10cms of breast tissue.  I had to have a mastectomy and was given the option for a bmx, prophylactic on the left.  I choose a bmx with immediate trams flap reconstruction and could not be happier.  I'm six weeks out from surgery and resuming my regularly scheduled life....3 kids, work, costume design for my daughters high school musical.  On final path there was a 1.4 cm idc grade 3 along with the dcis.  A surprise to all of us....that changed everything.  I went from having the good kind of bc to well you might need chemo etc..... Thankfully I had a bmx, so no need for radiation even with the surprise and I learned Friday that I will be treated with tamoxifen only.  My oncotype testing showed an 8% chance of recurrence and it only dropped to 7.5% chance if I underwent chemo.  I am so very thankful that I went ahead with a bmx and the reconstruction looks great.  If there are questions I can answer or if I can be of any support to you, I would be happy to do so.  Attitude is everything.  Be positive, you will get through this and there is much to be learned on this journey.  Wishing you peace, blessings and all the best.

    Strongerthanithought :-) aka Jen 

    · Share on FacebookShare on Twitter
  • vbishop
    vbishop Member Posts: 616
    edited February 2014

    Hi Stronger -

    This is the first that I've read about others minimizing your diagnosis.  The same has happened to me because I am fortunate to be a stage 1 with hormone therapy after BMX.  At times I feel down right guilty for not having to do radiation or chemo.  I have even had women at support groups totally ignore what I had to say or poo-poo my thoughts and feelings because my cancer is less than theirs.  So I quit going.  It was almost like "my cancer is worse than your cancer" type attitude.  That's just messed up.  Why should we feel guilty? 

    · Share on FacebookShare on Twitter
  • Steelers
    Steelers Member Posts: 3
    edited February 2014

    Hello:  I was dx with DCIS II in  October 2013 and was shocked to be whizzed through a discussion on surgery , surgeons etc.  my mind couldn't comprehend what they were saying.  Thank goodness my husband was in the waiting room and he did all the listening for me ! 

    I chose to get a second opinion with the James Cancer Center in Columbus Ohio and I can't tell you what a difference that made to me. I felt so at ease and loved my PS and BS. I decided to have a uni done And tram flap reconstruction on January 21,2014. And I couldn't be happier everything went wonderfully 

    BS said it was up to me if I wanted to take tamoxifen for five years. I did all the research on it and I'm not going to lie to you it freaked me out.  I have decided not to take it.  With all the side effects it scares me. 

    So I'm at home and can't wait until the weather breaks so I can get out and walk in the sunshine 

    I plan on enjoying each day to its fullest !  

    Thank you all for being here to "talk" 

    · Share on FacebookShare on Twitter
  • Ariom
    Ariom Member Posts: 6,197
    edited February 2014

    Hello Steelers!

    I was Dx a year before you and went with the Uni, no recon, and I am very happy with my outcome too!

    I decided to pass on the Tamox too.

    I can understand your excitement to get out and walk in the sunshine. I felt exactly the same way. It felt like there had been a shift, in a positive way. I take nothing for granted any more, and I am still living every day to the fullest.

    Best of luck to you!

    · Share on FacebookShare on Twitter
  • AZ85048
    AZ85048 Member Posts: 2,613
    edited February 2014

    Steelers - Hi and welcome!  We're all in the same stinking boat here, so no one judges.  I hope that walk in the sunshine happens soon...

    Hi, Ariom!!! 


    · Share on FacebookShare on Twitter
  • Ariom
    Ariom Member Posts: 6,197
    edited February 2014

    Hi Az, nice to see you!

    · Share on FacebookShare on Twitter
  • carla53
    carla53 Member Posts: 264
    edited February 2014

    Steeler so glad to see you had a good outcome with your tram flap.  Just got my surgery date of March 19th to have one.  Very nervous about it. Just starting to feel good and am not sure if i want to feel bad again. Have read about slow painful recoveries etc.  Could you elaborate on how it went and your recovery so far? If anyone else has done a tram, could you please tell me your experience?   I kind of want to so a DIEP but don't think I can get a good surgeon in our area who takes medical.

       Had taken arimedix for a few weeks and decided I didn't want to live with the s.e.'s.  My onc, of course, then put me on tamoxifen.   I have chosen not to take it. Changed my lifestyle in a few areas since b.c. and am keeping my fingers crossed.

    Have a great weekend all.

    Carla

    · Share on FacebookShare on Twitter
  • LHM65
    LHM65 Member Posts: 1
    edited February 2014

    anyone not do surgery? 

    DCIS and people seem to be crawling out of the woodwork to tell me to lop off both breast. I just want to research my options and not regret a irreversible surgery. 

    · Share on FacebookShare on Twitter
  • faerywings
    faerywings Member Posts: 173
    edited February 2014

    Hi again everyone,

    Steelers, so glad that you were happy with your decisions and that your DH and BS were so supportive! I am with you on waiting to walk in the sunshine-- I am in North Jersey and we have been getting hit over and over again with the snow. Between being tired from the winter (I have season affective disorder), my Lyme flaring and now this dx, its been a rough winter.

    Jen-  Thanks for the advice, When my BS started to explain to DH and I about the Stages and how some people consider DCIS to be "pre-cancerous" he really picked out that one line and focused on that. Maybe it was his way of coping? 

    Hi Carla!

    Right now, I am waiting for BRCA results and am most likely having a lumpectomy early March, followed by rads and then meds since I am E+/P+.

    All good news--- but it makes me wonder why it still makes me feel crappy :(

    · Share on FacebookShare on Twitter
  • vbishop
    vbishop Member Posts: 616
    edited February 2014

    LHM65 -

    Ultimately you are the one who needs to make that decision.  Although DCIS is a better diagnosis than most, it is still cancer.  Go with your intuition. 

    For me, a bilateral mastectomy was MY preferred surgery.  It just so happened to be the course recommended by my surgeon.  My cancer has a tendency to show up in the other breast and, quite frankly, I didn't want to spend my life waiting for the other shoe to drop.  I don't regret my decision.

    Don't let others pressure you to do something you don't want to do.  Change doctors if you have to...you have time.  Best of luck!

    · Share on FacebookShare on Twitter
  • carla53
    carla53 Member Posts: 264
    edited February 2014

    Hello back at cha faerywings. :) .. Just looked up symptoms for late stage Lyme disease.   Looks like it can pretty nasty.  So sorry you and your family are dealing with it.  Your plate is certainly full. Glad you have such a loving group people in your life. 

    Carla

    · Share on FacebookShare on Twitter
  • ClaireFraser
    ClaireFraser Member Posts: 94
    edited February 2014

    Chris, let me first say my heart goes out to you and your family.  My daughter was diagnosed with Lyme just a few weeks before I received my diagnosis with DCIS.  Lyme sucks!  How can such a tiny thing create such havoc?  And don't even get me started on why it's not receiving the full support of the medical community, insurance included, grrrrrr.  Okay, on to DCIS.

    DCIS is the good cancer, ugh. It is, but we still have to make decisions, which in itself, can be overwhelming.  I had a lumpectomy back in early December, the margins weren't clear, so I opted for a unilateral mastectomy with immediate reconstruction. I am now cancer free and will only need Tamoxifen, thank God.

    In all honesty, I think the DCIS will be easy compared to the Lyme. You are going to be just fine.

    btw, are you and your family seeing a Lyme disease specialist?  Feel free to PM me if you want to discuss further.

    (((((hugs)))))

    Claire

    · Share on FacebookShare on Twitter
  • faerywings
    faerywings Member Posts: 173
    edited February 2014

    Carla and Claire-- yes, Lyme is absolutely brutal. And its "invisible" so a lot of people don't understand, especially how you can feel normal-ish one day, and the next, be a total mess. Add in all of the controversy and the battles with insurance co's and Lyme feels like a full time, horrible job. I just had two of my dd's Rx's denied, even after appeals. *smh*

    DH and I see a fab llmd, one of the best in the field.  My kids' llmd is also amazing and perfect for them.He is 2 hours away from us which makes for a long day, and then I get to fight with their school over absences. I had to attend a hearing last week for DD b/c she had too many absences, even though they were all medical related. If they hit 11 absences, the school has to take me to court. Is that insane? And I have to do all of this now with trying to figure out this cancer deal. ahhhh!!!!

    BTW-- hubby is Type 1 diabetic, so I think we have hit the gamut of medical crap!Loopy

    We see out llmd today so hopefully I will have some more answers on how I am going to treat both issues and not kill my body in the meantime. Or my sanity. Oops! That is already gone! bwuhahah!

    · Share on FacebookShare on Twitter
  • ClaireFraser
    ClaireFraser Member Posts: 94
    edited February 2014

    Thank God for the llmd's!  My daughter is in her last year of college and if it weren't for her doctor, I'm not sure she would be graduating (the fatigue was bad, but it was the neurological problems that I was most worried about).  Lyme has reached epidemic proportions; we can only hope one day the medical community will treat it as a "real" disease, so that insurance co's are forced to cover it.

    Good luck with your appt. today!

    Claire

    · Share on FacebookShare on Twitter

Categories