Stories of DCIS with no recurrence

I don't plan on any recurrences!  I do think Aloha is right... you only hear/see from women who have had a recurrence.  Those who don't have no reason to post..  This Jan will be my 2 yr mark!

Wow NWMom........your diagnosis is the same as mine.  I was officially diag in May!  Caught by routine Mammo when my OB/GYN refused to see me for my yearly PAP unless I went and had a mammo.  No lump, no nothing.  They called me back for another lookie.........then a vacuum assisted biopsy.  They still didn't know for sure so I had the first surgery....finally they said DCIS, Grade 3, comedo, necrosis....all those nasty sounding words, etc.  Then another surgery for clear margins.  Now I am in week 4 of Rads.  All the stuff they have done to me is minor compared to wondering if the Grade 3 means it will rear up again elsewhere.  I have taken everything so calmly that my family thinks it is no big deal........but I am pretty nervous.  I don't think about it all the time but it is always there in the back of my mind.  And the Rads have made me feel like a zombie.  I am sooooooooo tired.  I can't wait for this all to be over.  I do consider my self very very lucky......STAGE 0.  And I thank the Good Lord for an Ob/Gyn that cared enough to force me to get the Mammo.  Prayers for everyone here..............

I agree with everyone.  I believe the people that have recurrences will post and the people that don't may not.  It's been a year for me, no problem.  My cousin had breast cancer 23 years ago and no recurrence.  When I was diagnosed, my cousin called and told me exactly what was going to happen (I had a lumpectomy, radiation, tamoxifen).  She called me once a week to see how I was doing.  Because she is 23 years out, from the beginning, it took the fear away (since it was Stage 0).  Plus, as others have said, if they find something hopefully it will be early and the can fix it. 

I think it's also true with Tamoxifen.   People read about all the side effects and are afraid to take it.  The people that don't have side effects are not going to post that.

I take tamoxifen with no side effects.  I figured I would try it and see what happens and it is fine.  I read the side effects of birth control pills and they are very similar, but many people don't think twice about taking birth control pills.  My Onc said if you took the pill with no problem, you shouldn't have a problem with tamoxifen (at least with the big side effects).  some people will have hot flashes, depending on how young they are.

Good luck.  Don't worry - it's all going to be fine.

I hope this is an encouraging story.  I was diagnosed in 2002 with Stage 1 IDC 1.5 cm but predominently  DCIS.  I  did lumpectomy/radiation followed by tamoxifen for 3 years and aromasin for 2 more years.  I have just been diagnosed with a recurrence at 9 years, but much earlier than the first time...still DCIS.   I just had a mastectomy Aug 8 and I've been told my prognosis is still excellent.  A recurrence is a very low probability, but it's a real possibility, so don't give up your vigilance.  Many women become complacent after hitting the 5 year mark and don't follow up as much as they need to.   Think of it as a chronic disease...one that needs to be monitored forever.  Then try not to obsess about it (although easier said than done).

I'm coming up on year 4 NED after DCIS.

Taking a look at the original post, it is highly unlikely that DCIS will come back as stage 4, even high grade.  There are many steps to go through before one hits stage 4.   One of the challenges of DCIS is the potential to miss microinvasion, which is why they often recommend radiation for those with higher grade DCIS.

No recurrence here nearly 2 years out: http://community.breastcancer.org/forum/68/topic/773669?page=1#idx_1 (tried to post as a hyperlink in my post on this board but the hyperlink got screwy so I deleted post).

Seems once people are "cured" they don't necessarily keep posting.

Note: I had a lumpectomy, rads, and no tamofixen in my early 40s. 

ShannonW,  I agree with you and look forward to the day when I can stop dwelling on this. As a matter of fact, it's come to my attention that I have a love/hate relationship with this site. I love that it's here and it provides great info and support to all of us; I hate that I can't stay away. I was dx'd in August 2009, DCIS grade 3 - no recurrence. Fingers crossed.

4.5 years here.  No recurrence - and as time goes by you dwell on the experience less and less.  It gets better, I promise!  Also the recurrence risk for pure DCIS is *local* recurrence - so that's why good margins are important - and that risk is highest the first 2 years out, per my surgeon.  Think positive here - my onc reassures me we'll be swapping pictures of our grandchildren one day (we are the same age...)

Hi NWMom,

I was diagnosed at age with DCIS in Feb, 2007. Had lumpectomy which showed that it was extensive with microinvasion so I had a uni mastectomy. I did not take Tamoxifen. No sign of any recurrence. I have a yearly mammogram and U/S. 

I don't know how to update my profile info. 

But I was diagnosed 7/7/11 with DCIS (comedo?).  I just had surgery - lumpectomy, Stage 0, intermediate grade; 1 node (clear).  Mass 2.1cm, clear margins.  Am about to start partcial breast radiation (emotionally/psychologically couldn't handle implantation of SAVI brachtherapy device).  The radiation starts next week, 2x a day for 5 days (just like bracheytherapy).

I'm very concerned about all of the mammos I've gotten this year - CT to map, etc.  They just did 6  or more mammos just 2 weeks out of surgery - really painful, caused swelling, redness at node site.  I'm very anxiety and depressive - have been for many months before diagonsis.  Don't see a future.

I am scared of the intense radiation coming up - don't want to take tamoxophin or arimedex.

Mine was so small and early and node clear.  Realistically, after radiation (which can cause so much damage to our bodies) -- do I really have to do the drugs?  No cancer in right breast.  It was just a very small amount in left breast.  I feel like my body is being beat up, esp. the breast. And my mind is so fragile.

Even after radiation, the risk of recurrence is 10%.  Seems like it should be zero for left breast. I stopped HRT 7/13/11 --- very unhappily by the way.  I felt so much better and looked so much better on them.

I've always had little cycsts and calicifications.

The day before I got all those mammos (after 2 weeks out of surgery) ---- I really felt beat up. Too muhc radiation. And the MRI I got the day before was redundent (took 8 weeks to get O.K. from Medi-Cal), that's was made this oncologist order those mammos.  So unnessary.  I was never told they would do mammos so soon.  Now all the CT's to place the stupid radiation.

I'm so sick of the cancer industry.

So after radiation, why do I need those other drugs? The surgery path said that dead cancer cells were removed.  So, they were already dying.  I've been taking alot of tumeric, etc. that's why, I believe.

I don't have the luxury of anymore MRI's because of Medi-Cal like all these other women seem to have because they have real insurance and their own doctors (I am stuck in a clinic setting - so personal attention at all)  And I am completely alone and isolated now.  No friends left because of my depression and anxiety and they all kept pushing psych meds/therapy which is all so hit and miss.  No luxury of a real shrink either.  Just counselors.

Haven't many women done just fine after having Stage 0 tumor, grade - intermediate, non-invasive, 0/1 nodes, ER+3 PR+2?  without all these drugs?  I'm 63 for heaven's sake.  Have lost tons of weight from anxiety and hopelessness.  Used to be a dancer/athlete.  Am terrified of everything - don't love anything anymore - don't know what to do to make a living.  It's like I feel what's the point?

I don't want to keep looking over my shoulder the rest of my life which all the cancer docs make me feel.  It's their business to push radiation, drugs, etc.  they never study or embrace other therapies that can be used in conjunction or in some cases in place of "standard of care" irradiation and loading our bodies with drugs.

I'm so depressed about it all.  Surely, there is a happy medium.