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Micro-invasive DCIS that is her2+++

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  • lmnop35
    lmnop35 Member Posts: 27
    edited March 2010
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    Ok, just had my first onc visit and it went very well. He said he would not recommend any further treatment as I only had about a 2% risk of recurrence and the harm of chemo is about that also. He said he wouldn't treat until about 3 mm. Of course, that was what I wanted to hear but I'm scared to believe in it. I feel lighter than I have in a LONG time! And he even said he would only advise a 6 mo wait before trying to get pregnant. I will probably wait longer than that for my own sanity, but that is also good news to me! I have another appt on Thurs.

    And I got my first TE pump yesterday. Not so bad and I'm almost back to my previous size - but not shape :)

  • laura347
    laura347 Member Posts: 58
    edited March 2010
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    Hi Imnop, I am Happy for you.Smile It is such a weird sort of relief to know what your plan is. I am only a couple of months ahead of you! My exchange is on friday and I hope it goes as well as Amy's! You will do well, keep positive and enjoy your life and keep in touch

    Laura:) xoxo

  • Liz08
    Liz08 Member Posts: 100
    edited March 2010
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    Imnop-

    GREAT NEWSLaughing!!!!!!  Remember lots of positive thoughts and reach out if you need to.   

    {{{{{{HUGS}}}}}}}}}

  • Liz08
    Liz08 Member Posts: 100
    edited March 2010
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    Since we're on a GOOD NEWS ROLL.............

    I have some good news to share too...

    Just had a follow up bone scan due to pain in my sternum, ribs and hip and all is fineCool.

    Sternum and rib pain is probably related to radiation and my hip pain is probably related to injury from exercise such as yoga.

  • lmnop35
    lmnop35 Member Posts: 27
    edited March 2010
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    Liz, good news on the bone scan! Isn't it horrible that every little pain will have us running to the dr now. I have been having some pain in my hip and it's all I can think about, even after the good news. Still, I'm very glad to hear you got a clean bill of health!

  • Liz08
    Liz08 Member Posts: 100
    edited April 2010
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    Imnop-

    it's been a long day but I couldn't leave you hanging.  I just want to say that you will trust your body again but it will take some time.  Since my cancer diagnosis, I have been paying more attention to aches and pains that I never would b/4 my diagnosis but I am starting to trust my body again and don't automatically think that every ache and pain is cancer relatedInnocent.  I have had hip pain since last fall and my sternum and rib pain has been an ongoing issue for some time now.  It started a few months after I finished radiation.

    What's tough about hip pain is it can be caused by so many things such as ovarian cysts, muscle sprains & strains, and even due to spine issues.  The cause of hip pain can be very tricky to diagnose according to my doctors.  I'ved had numerous injections into the socket and muscles but the injections haven't helped in the long run.  My sports medicine doctor said that the next step will be to focus on the spine, so we'll see Undecided.

    I think I'm better off sticking to walking, running and my free hand weights.  I was fine when I stuck of those exercises Wink.   

    Ok, I'm babbling cause I'm tired.  Good luck at your doctor's appt tomorrow Smile

  • Liz08
    Liz08 Member Posts: 100
    edited April 2010
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    Laura-

    just want to wish you a VERY HAPPY BIRTHDAY Laughing!!!!!  Hope you have an AWESOME DAYE Kiss!

  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    Thankyou!!! I didn't know you were having a bone scan....OMG I am so relieved for you Yeah!!! I hope you have wonderful holiday

    Laura xoxo

  • amyob
    amyob Member Posts: 56
    edited April 2010
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    Happy Birthday Laura :)  and you are going to do great tomorrow!  It will be such a nice present to get your new boobiesSmile.  Imnop and Liz - Glad to hear all the good news!  I also went to the dermatologist and she didn't find any skin cancer.  Hee Haw!  Keep the good news coming :)

  • lmnop35
    lmnop35 Member Posts: 27
    edited April 2010
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    I saw my 2nd oncologist today and he agrees that no further treatment is necessary. He was even a little less conservative than the other. The first onc said I should have blood work and chest x-rays occasionally, but this one says no. He said it's not worth doing and the difference b/t when something is detectable through tests and when it's symptomatic is very small. He said I didn't even need to wait 6 months to start trying to get pregnant. Overall, awesome news!

    Does anyone else have regular screening other than mammograms?

    It's exactly what I wanted to hear. Now I just have to get my new boobs and try to put this trauma behind me. Good thing I was already in therapy. She's going to earn her money now :)

  • Liz08
    Liz08 Member Posts: 100
    edited April 2010
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    Laura- hope you had a nice b-day, good luck today and let us know how it went.

    Imnop-more good news.!!!! yeah!!!!!,  I will answer your question later when I have more time.

    Have a good day everyone Kiss

  • amyob
    amyob Member Posts: 56
    edited April 2010
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    Great news, Imnop!  I will be doing 6-month symptom checks only and I think for just two years, then it's once a year.  Initially, I had a chest x-ray, a bone scan, and a bone density test.  I was shocked at first, that I wouldn't be having more routine tests, but it does seem to be the consensus.  My first check-up is in June.  Hope this beautiful weather is reaching all of you today! 

  • Liz08
    Liz08 Member Posts: 100
    edited April 2010
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    Imnop-

    Presently, I am being seen at least every 3 months by one of the doctors from my team which consists of 2 medical oncologists, radiation oncologist, surgeon, primary.  Usually you have only one medical oncolgist but I choose to be follwed by 2 rotating the visits between them.

    I had a lumpectomy and radiation so therefore I am being followed by my surgeon and radiation oncologist as well.  My surgeon just does a comprehensive exam of both my breasts and the radiation oncologist does the same.  I believe if I had a double mast, I would only be be followed by my onocologist.  One of my oncologists does a CBC with no tumor markers every 6 months, she only does tumor markers for high risk patients and fortunately I don't fall in that category. The other oncologist I see will not do any blood work since she feels that I am low risk too therefore it's not necessay.   I hope I answered all your concerns if not, ask away.

    Amy-

    yes the beautiful weather is reaching me here in the northeast Cool.  I can take this weather all year round. 

  • Liz08
    Liz08 Member Posts: 100
    edited April 2010
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    For those of you who celebrate Easter, HAPPY EASTER!   Now back to working on my taxes....

  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    Hi guys, yes...HAPPY EASTER to you Smileand yours!! I am coming out of the dark, my exchange went well, just sore. I am little disappointed because I still have to waer the iron bra for a couple of weeks...but I can handle it. I have no t seen them yet...Amy have you seen yours, are you happy? Amy good luck on your church gig, my husband is musical director at a church so  he will be gone tomorrow and actually has gig tomorrow night. I will miss him, because he really takes care of me,I am luckySmile I am digging the weather...Spring is coming!!

    Laura xoxo

  • amyob
    amyob Member Posts: 56
    edited April 2010
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    LAURA!!!!!  So glad to hear you made it through ok!  So, you have to wear a bra for 2 weeks, huh?  Mine were 325 cc and I was able to remove the gauze after 3 days.  Now I just have the steri-strips on and they'll come off on Tues (2 weeks).  So, to answer your question, yes, I got a good look at them after taking off the gauze.  Keeping in mind that I had trouble with one of my incisions after the bi-lateral, mine are not exactly twins, but they're not bad.  One of them had been expanded for longer and 25 cc's more, so the pocket is larger.  In other words, one is softer and has more room to move around and the other is the opposite.  We're going to wait and see what my body and skin do - I'm not hoping for any miracles, but he says we can do a little adjusting when we do the nipples.  They look pretty good, though - especially in a bra.  Definitely better than before ;)  My gigs went well, thanks.  The words and the music seem even more special now....  There is a silver lining after all. 

  • kawee
    kawee Member Posts: 21
    edited April 2010
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    Hello all.  I just found this thread and am so glad I did.  I also had 1mm microinvasion.  Was told chemotherapy was not even considered, herceptin in anything less than .5 cm, the risks would outweigh the benefits.  Was give tamoxifen even tho ER+ was 10%.  Some of you say you were not offered it, is that correct.  I also see several mastectomies on here, is there a reason for that.  I had made the decision to have one, but EVERYONE told me it was absolutely not necessary, i.e. onocologist, rad ocologist, breast surgeon.  I am treated at a excellent breast center here. 

    I would appreciate you sharing your knowledge.  By the way, I am 64.  Also, something I never knew before, HER2+++ is different from Her2+?  I guess I have alot of things to ask my onco next week.

     Karen

  • amyob
    amyob Member Posts: 56
    edited April 2010
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    Hi Karen,

    Your Dr's are right!  For some of us, mastectomies are in no way necessary, but it is a solution we can live with.  I was also slightly ER+.  My DCIS was ER+ 10% and my IDC was 20%.  My onc said that since I had a bilateral mastectomy, the risks of Tamox outweighed the benefits.  If I had opted for a unilateral mastectomy or breast-conserving surgery, my risk of contralateral malignancy would have been higher since I'm ER+, and I would have taken Tamox for sure.  Having the bilateral saved me from dealing with radiation and Tamox, so that is what I chose to do.  It was the right thing for me, but not for everyone :)       

  • COLPeg
    COLPeg Member Posts: 1
    edited April 2010
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    Evening Ladies,  I am 5 months post-mastectomy.  Surgery recovery was quick - I never skipped a beat.  But....now -  months later I'm hitting a wall.  I'm wondering if anyone else has experienced this......Initially, my onc put me on Arimidex (I'm post-menopausal) but it gave me wicked headaches.  She then switched me to Tamox but within just a few weeks I was out of my mind!  Menopause all over again and I just didn't feel like myself.  I stopped taking it 2 months ago.  But it seems that ever since, I've been in a weird funk.  No meds at all but now I'm moody, a bit sad and less energy (I'm generally very active, busy and content!) Is it the weather?  Am I having some sort of delayed reaction to the cancer diagnosis??  I really didn't dwell on the cancer much - diagnosis, surgery - done - on with my life.  But now I feel like a sad and angry zombie!  Any advice out there?  Seeing my onc tomorrow.  She's not going to be happy that I quit taking the tamox....

  • kawee
    kawee Member Posts: 21
    edited April 2010
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    COLPeg - You're exactly where I'm at.  Dr. gave me tamox because of the "less" side effects.  Made me feel so bad, I quit.  Gotta go to the onco next week and tell him.  He, too, is not going to be happy.  It gave me severe body aches, headache, fatigue.  I also am postmenopausal and was on estrogen when diagonosed and was immediately taken off which really thru my body into a major funk.  That's what I attribute it too.  But also, my Dr. says it is not unusual for women who have just gotten over breast cancer to feel this way.  We can get post traumatic stress.  I'm trying to work thru it.  Hope it doesn't take too long.  She gave me effexor, can't take that either, makes me feel terrible.  She wants to try others.  I think I'll just wait, try to walk more (hard to do when you feel awful), keep my mind and hands busy, pray, and hope for the best. 

  • laura347
    laura347 Member Posts: 58
    edited April 2010
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    How is everyone out thereSmile?!!

    Laura xoxo

  • lmnop35
    lmnop35 Member Posts: 27
    edited April 2010
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    I was thinking about something today and I was wondering how all of you felt about this. In the month or so between my dx and my surgery I was of course very sad and scared of the surgery and mad, all the normal stuff. But, I always had this feeling in the back of my mind that I didn't have "real" cancer b/c I had DCIS. I really mentally separated myself from cancer patients because of everything your read about DCIS, "non-invasive", "non-life threatening", some will never become invasive, takes years to become invasive, and so on. But then after finding out about the invasion, suddenly I have REAL cancer. I can't pretend it's not there anymore. I no longer have the so-comforting "Stage 0" to rely on. And then not doing chemo, I feel like I escaped out the back door. I feel SO lucky to have such a great prognosis, but it almost feels too easy. Not that any of this was easy. I'm hoping you understand what I mean.

    I am also really starting to mourn the loss of my breasts. The TEs are getting a little easier, but I can't even bear to look at them. My husband went to the onco with me and I made him leave while the dr. examined me. I'm rationalizing that this is temporary so I don't have to deal with it if I don't want to, but I'm thinking that I'm going to have to find a way to get used to this. The skin on my breasts feel so foreign. I'm just really sad about it. Part of me thinks I've made a mistake, but I know that's not true. Especially after I found out about the invasion, a lumpectomy would have driven me insane!

    It hasn't even been a month since my surgery so I know I'm still really new at this and working my way through. Just feeling a bit low today I guess.

    On an unrelated topic, do you guys have your vitamin D tested? Mine was low at the time of my diagnosis. It was 19. I've been researching on this site lots of women say their oncologists recommend a level closer to 80. I've been taking supplements and I'm getting retested next month. I've been reading about how a defienciency has a big impact on your overall outcome. So now I'm freaking out about that! One more thing. I'm going to have to start sunbathing.

  • amyob
    amyob Member Posts: 56
    edited April 2010
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    Dear Imnop,

    I went through the same exact feelings -- first about dcis, then idc, and finally no chemo/herceptin...   I'm 6 months out and I don't think about those things much anymore.  I do, however, still share your sadness over the loss of my breasts - and I didn't even like mine very much to begin with.  I feel sure, too, that the bilateral was absolutely the right thing to do for me, but it's still hard.  I have my implants now and they're much, much better than the TE's, but the feeling is gone and they don't even seem like part of my body.  I really hate having to wear a bra during sex to cover up my ugly scars and lack of nipples!!  Maybe just like the shock of diagnosis and treatment, these feelings will fade for us.  I know it can be depressing, but we really do have to remind ourselves that our TE's and implants are 100% cancer-free Smile  Did you end up doing nipple-sparing?  I did not.  Maybe once we have the nipple surgery and tattooing, it will be easier to feel normal and more positive...  LAURA - How are you???!!!   

  • AnnaM
    AnnaM Member Posts: 136
    edited April 2010
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    No sunbathing, lmnop, take vitamin D instead. I got my levels up to normal by taking 2 x 1,000 IUs a day.

    Chemo put me into accelerated menopause and that did all sorts of bad things to my body and my state of mind. I was very nervous about how I would deal with my hubs seeing my body post bilateral mx and I think one of the nurses in the hospital must have suspected as much, because she showed him how to empty the drains and so he saw everything before I did.

  • Liz08
    Liz08 Member Posts: 100
    edited April 2010
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    Just waned to say "HI" and don't have much to add since I had a lumpectomy and rads.  I can add that my radiated breast doesn't feel like my "real" breast and I am one of the very few who developed several side effects from radiation such as constant chest, breast, and rib pain and some shortness of breast, so I know that the rads did a number on my body. I've had scans to be sure it's not cancer related.

    I believe regardless of which threatment we've had, once you've  had cancer you will never the same as b/4.  You develop a new norm and just have to thankful that our cancer was caught so early.  I believe that time "heals" and acceptance of what has happended is a big part of healing but acceptance comes with time.  

    Please don't start sunbathing.  I developed 2 skin cancer after having breast cancer.  I take 2,000 IU's of Vit D3 twice a day in addition to my arsenol of supplements under the advice of my naturalpath.   

  • lmnop35
    lmnop35 Member Posts: 27
    edited April 2010
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    Thanks for your input. Don't worry, I'm not likely to start sunbathing. I am super fair skinned and I hate being out in the sun. But I will make more of an effort to go out for 10-15 minutes without sunscreeen. I think that will be the best of both worlds. Luckily, I live in NC and it's fair weather most of the year.

    I know I just need to give myself some time on this. I feel really sad about how all of this has changed my life and I would love to just say "it is what it is, now move on with life", but I'm not quite able to yet. I hope it will come to me soon.

  • shelleydodt
    shelleydodt Member Posts: 6
    edited April 2010
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    Would everyone PLEASE go on You Tube and watch Dr. Czerniecki's  or google DCIS and Her2/neu

    http://www.youtube.com/watch?v=2-z3RVwReEg

    He has a vaccine for DCIS Her2/neu and you are still eligible with microinvasion. It is a clinical trial. They use your own cells and make a vaccine, you get six injections then have surgery. I WAS IN the trial and my cancer was ALL GONE at the end. You can still have a mastectomy if you want after the vaccine but it is a great comfort for me to know my immune system has cells cirulating 24/7 that will eat up any new cancer cells. Please visit our website Penniesinaction.org and you can get a link and read all Dr, C's publications. It is a clinical trial listed in the govt list of trials. It is in Stage 2 testing and he has had wonderful results. My D-3 was 42 on 2,000 units and they upped my dose to 6,000. I have hard nails for the first time in my life. Also I got tested for iodine deficiency, fibrocystic breast disease can be cured if the deficiency is made up. Also, tumeric as a suppliment helps reduce tumor growth. My heart goes out to all of you, I was equally terrified, but now nine months out, I feel great again. Check out the vaccine-it was like being rescued out of a burning building. You do have to travel to University of Pennsylvania in Philadelphia to have the vaccine made, but your surgery can be done at home. The usual course is vaccine THEN surgery.

  • lmnop35
    lmnop35 Member Posts: 27
    edited April 2010
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    Liz, I saw that you work with a naturopath and you take lots of supplements. I am interested in contacting a naturopath. Do you have any tips on how to find a good one and the right questions to ask.

    Thanks!

  • Liz08
    Liz08 Member Posts: 100
    edited April 2010
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    Imnop-

    I actually have a few naturalpathic pysicians within my family (sister-in-law and brother-in-law) but they do not specialize in women's health as the naturalpath I see does.   Keeping this in mind, along with my family being from Europe, I strongly believe in natural medicine as complementary medicine but not to take place of modern medicine.  Natural medicine can get very complex as far as specialties. 

    My surgeon is a strong advocate of natural medicine and strongly recommended the naturalpathic physician I presently see.  My surgeon has been referring her breast cancer patients to my naturalpath for over 20 years with excellent results. When I met with my naturalpath, she sent me for extensive blood work and reviewed all my pathology reports with a thorough understanding of my tumor characteristics.  My naturalpath put together the arsenol of supplements based on my tumor characteristics and blood work results.      

    As with any physician, word of mouth(especially from another physician) is the best referral.  Talk to people and keep asking around, you are likely to get a name or two. Many naturalpaths  will do a 5 minute phone consult for free, this may be a way to weed out naturalpaths.   May be your cancer center/hospital can suggest someone.  You may also start a thread in the natural section asking if anyone can recommend a naturalpath in your area who has experience with breast cancer survivors.  This forum is an excellent resource to get connected, support and ofcourse information.  There are some naturalpaths that will do out of state phone consults too.

    Any other questions please...just ask away. 

  • flyingdutchess
    flyingdutchess Member Posts: 107
    edited April 2010
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    This may be the wrong place to post this.  I had 3 lumpectomies for DCIS last summer until they could get the margins clear and then had radiation.  I was told I had no estrogen receptors and so tamoxaphen would do me no good.  Other than that nothing was explained.  My heart is beating really fast as I write this as I am finally ready to have someone explain the gobbly-de-gook of my path report.

    The last one dated lastSeptember says  left medial margin negative for malignany benign breast parenchyma with focal usual ductal hyperplasia and stromal fibrosis.  left lateral margin negative for malignancy, benign breast parenchyma with focal stromal fibrosis, ,microsysts, usual ductal hyperplasic and apocrine metaplasia.

    Left breast excision  residual microscopic foci of ductal carcinoma in situ, high nuclear grade, solid typ-e, with focal necrosis in association with previous biopsy site.

    Pathologis tumor stage stage pTis, pNX, pMX

     Oh, the 3 areas  in the excision and rexcisions  removed are as follows  #1  2.0x1.0x0.5   #2   4.5x2.5x1.0     #3  8.5x7.5x3.0  Obviously my left breast is alot smaller now than my right.

     Would someone interpret this for me in English.  I am finally  ready to listen.  Oh it was also stated that it was multifocal.

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