DCIS and confused

CTMOM1234

jadeblue - Wishing you wonderful results from the genetic test and mri! I went down a similar path last year, and once the mri & genetic testing came back OK, my bs said I could either go lump/rads or mast. Just be prepared for the possibility of an mri false positive -- I did get a false positive with the mri on the other side, which led to a biopsy but then thankfully nothing.

My decision: I chose less surgery/reconstruction and had a lump. and then rads.

I have never ever for 1 single day wished that I'd had a mast. And I wound up having a teeny invasion listed in the final lump.path. report, so underwent a SNB 2 weeks later (thankfully fine). Even with all of that, I'm only in my 40s, would have undergone DIEP reconstruction had I gone with the mast. (met with a plastic surgeon before making final decision).

Instead, 1 year later, I look the same and still have full sensation in both breasts. In fact, rads were much physically easier than I'd thought (mental was the worst part, very stressful of the unknown) and I like that added protection from zapping the #$%^ out of any possible stray cells, something not everyone does if they have a mast.

Everyone must make their own best decision with the information they're given. You can't undo removing a body part, so you are wise to proceed cautiously.

Beesie

Jadeblue, talk to your doctors and do what you are comfortable with. Everyone approaches this differently and everyone reacts differently. One person's regrets over having a lumpectomy is another person's regret over rushing too quickly to have a mastectomy or a bilateral.

If you have comfortable with the approach recommended by the 2nd opinion surgeon and you are ready to proceed with the lumpectomy, don't let someone else's experience talk you out of it.

For the record, I had a single mastectomy - too much DCIS in too small a breast, so I didn't have any choice.  I'm glad that I had a single and not a bilateral because I still have one natural breast with natural feelings.  And if I was in the same situation again and I had a choice between lumpectomy or mastectomy, I'd go with a lumpectomy.  For me, physically and psychologically, there is no comparison between the two; the way I see it, having a mastectomy makes me a breast cancer patient for the rest of my life.  I don't say any of this to sway you or influence you, but just to put one more experience on the table, supporting the point that we each see this differently.  So you have to do what's right for you and only you and not what was right for someone else.  

XmasDx

Just a warning regarding what Herky was talking about on page 1.  I'm not sure if it is what happened to me or not, but I made a major decision because of it.

Mammo & dig. mammo showed calc clusters, did core biopsy - came back intermediate grade DCIS.  Surg Onc ordered MRI just to be sure there were no other areas.  A lumpectomy + rads was planned.  

MRI turned up very large area of DCIS 63mm x 27mm (I'm a small B-cup), in addition to an entirely different area in a different quadrant that was suspicious.

No further biopsies were done on the "rather extensive" area of DCIS since the area had already been biopsied.  It was assumed that the area was as large as indicated.  The new area underwent MRI-guided biopsy and was benign.

I was told that my lamenting between lumpectomy and mastectomy was in vain, because since the DCIS area was above 4cm (at 6.3cm) I was not a candidate for a lumpectomy.  We scheduled a uni-mx with DIEP.  Because of the one chance at reconstruction of both breasts with DIEP, BMX was even mentioned, althought the right breast was fine, though fibrous and dense.  I made it clear that I had considered BMX (and consulted PM with Beesie on that topic as well ), but I was sure I wanted to keep my right breast if it was not diseased.  (My genetic tests came back normal also, no bc in my family, not a lot of risk factors for me, 2 children before age 30, breastfed each for 2 years, etc...).

Well, the 2nd (B9) biopsy left a large hematoma that lasted for 2 months until my mx.

My final path report from the mx shows 0.8cm of DCIS!  When the nurse called me just as I was being discharged from the hospital, I couldn't believe my ears!

Now I know it's not cool on these boards to complain about having LESS cancer than you were told you had.  I get that.  I totally do, please please please don't think I am complaining.  I am just saying that the MRI in my case seems to have put off a HUGE false positive, and I was REQUIRED to have an MX because of it.  Was it blood/inflammation as Herky suggests on page 1, post biopsy?  

Based on the large hematoma I got after the 2nd biopsy, it is certainly possible.  The biopsy tract area was still indicated as inflamed in the final path report.  

My surg onc is having the breast tissue re-examined as I write this, just to be sure about the discrepancy.  I mean, they found less than a tenth of what they told me was there!  

The final path report seems to focus on my 2 nodes and also the exact size and placement of that old bloody hematoma and its nature.  There is nothing in the detail of the notes describing the area where the DCIS was found.   I find it strange, and I'm glad they are looking at it again.

Would I have had a mx for 0.8cm of DCIS?  Boy, I don't know.  I didn't want radiation, that is true.  I'm happy with the DIEP, also true.  But losing a breast?  Whew, that's a toughie over .8cm of grade 2 DCIS.  I don't know.  

I hope I'm not offending anyone by sounding ungrateful about a better dx than expected, just wanting to warn people, BELIEVE it is your right to ask questions, ask for more tests, ask why they are sure, and believe it is your right to do what I did not do - get your slides sent out for another review (I considered Dr. Lagios, but did not do it).  I felt like so many eyes had been on all my tests, I was never ever told that the MRI area of "enhancement" could be a false positive.  I had no idea.  Of course I'm glad the nodes were negative, and the DCIS area was small, and no IDC was found.  Of course I am.  I read the posts on here and mourn with all of those who have the opposite happen post-mx.  I just wish I would have had more complete information while I weighed my decision.

There's no going back once it's over, my mx was 2/28/11, and my breast is gone forever, whether it needed to be or not.  I'm reconciled with my decision, I really am, but just had to chime in.  I'll update/edit this if the 2nd review of my pathology turns up something new.

I guess my lesson learned in this, or the advice I would second from Herky, is to get your MRI's before your core biopsies if possible.  

Deirdre1

Xmasdx:  No you are not offending anyone because this is real and it happened to you so it COULD happen to someone else.. I thank you for putting an new info out there - it's important for all of us to know every possibility even if it is remote!!!

This is also a good story about why we should have a second and possibly third opinion on all of our tests!!!  Who knows if it could have changed your position to have another radiologist read the MRI - I think it is possible.. With a second set of eyes and at a different facility you could actually be looking at 2 different readings so, in this case, you might not have made the decision about the mx...  It's certainly not clear, but then that is the problem all of these tests can be over or under read...  Thanks for the input, I for one am glad you posted!!!

Best, Deirdre

Lovegolf

No that post did not offend me but I do take issue with one statement from Beesie(which is rare, I have found her to me most knowledge about DCIS.) The statement that a "Mx makes me a breast cancer patient for the rest of my life." WE are all cancer patients and survivors for the rest of our lives not matter the treatment. Whether you have a lumpectomy with radiation or chemo or unilat MX w/ reconstruction or a bital MX w or w/o reconstruction at the end of day you will still be a cancer survivor and you and your family will not forget that you went through this.

Jade there is alot of information and opinions here but this is your decision to makee after reading things here, talking to doctors and talking to your friends. I wish ensight and calm at you do so.

cycle-path

Lovegolf, I think what Beesie is saying is that a MX has left a physical scar that will always be there and that may keep her from ever really feeling "normal" again. While it's true that we are all survivors and our lives are changed forever, perhaps being a "patient" is somewhat different from being a "survivor." I should think that a large physical change such as a MX could make one feel like a patient. A lumpectomy scar could give more of a feeling of "survivor." 

Either way, though (and as you know), we have each had a different experience and each of us deals with our experiences in different ways. No one can say what's right for anyone else nor how we will or should respond.  

Beesie

Lovegolf, I'm sorry if my statement upset or offended you. cycle-path, thank you for explaining.

I understand that whatever the treatment, breast cancer will be a presence in our lives for the rest of our lives. It's not something that we will forget or that will ever be far from our thoughts. That's the mental and emotional connection that we all have to breast cancer. That's not what I was referring to.  

I was speaking only for myself and I was very careful to phrase it that way, saying that "having a mastectomy makes me a breast cancer patient for the rest of my life." I'll be honest and say that I'm always a bit envious when I read posts from women who've had lumpectomies and say that the scar is hardly noticeable anymore. I'm happy for them and I wish that I was in that position. My reconstruction is good but when I look in the mirror every morning and every night, when I'm in the shower, when I'm making love, there's no escaping the fact the I've had breast cancer; that's what makes me a "breast cancer patient" for the rest of my life. I can never put breast cancer in the past, from a physical standpoint. That's just how I feel. 

Lovegolf

Beesie knows more about DCIS than some doctors I know. I know we all make the decisions that we feel are right for us. The decision is so personal. We can all say this was my situation, this is the decision I made and this is why I did so. No one of us is more or less a cancer patient than the other. We carry our physical and emotional scars everyday and survive.

XmasDx

Just had to update my earlier post with some new news and also more lessons learned.

I asked my ps today (after getting my drains all out -yeah!) if she had received a new final path report on me yet because it was my understanding that my surg onc had ordered another review of my mx tissue due to the MRI/path discrepancy.  She said no, but we talked about the large DCIS area on the MRI and how really once that shows up (even it if it is just inflammation from a biopsy) they really have to treat it as if it is all DCIS and do the mx.  They can't just keep biopsying little sections of the area, which I guess makes sense.

Once I got home, she called me right away and said that she DID just get a revised final path report for me.  I have been moved from Stage 0 to Stage 1.  There was a 3mm tumor if IDC hiding in the DCIS.  They also found more DCIS, although the report does not say how much.

Apparently, my surg onc asked pathology to review my tissue samples, specifically comparing them to the MRI.  I had no idea that was not standard protocol!  However, once they used the MRI as a guide, they were able to focus on in the area of true concern (not my old benign hematoma!) and find not only more DCIS but also the IDC.

I don't know yet if this is going to change my treatment (margins were very wide, the report says, and it is a grade 1, slow growing IDC), but it well may change what I need to do.  

But we would never have gotten this second review of my final path report if DH & I had not brought up the discrepancy to our surg onc's nurse and then again to the surg onc in person.  

We must be our own advocates, it is so so easy to fall through the cracks in this system.  

Deirdre1

YES we certainly MUST be our own advocates!  I'm so sorry that there was invasion found!  This is another example of the complexity of DCIS and the tools used to discover and treat it... DCIS is sneeky and can seem harmless but become quite dangerous almost (it seems) overnight!!    Please keep us informed about your journey!  Best, Deirdre

cycle-path

Xmas, good for you for asking questions. Now I have a question for you. I'm a little confused about your story -- have you gotten a second opinion on your pathology or are you planning to get one?

XmasDx

Cycle-path - I had NOT gotten a 2nd opinion on my pathology, but now I'm thinking that I will. 

What happened was that I received my final pathology back after my uni-mx, and it showed .8cm DCIS.  This did not jive with the 6.3x2.7cm area shown on the MRI.  We questioned that to the surg onc, and she had the labs rerun the pathology taking more care (much more care!) to use the MRI as a guide.  So it wasn't really a 2nd opinion, it was a review of the work done by the same lab.  

As far as 2nd opinions go, I think it's hard to know where to go with 2nd opinions; do I get a 2nd opinion on the pathology AND a 2nd opinion from another med/surg oncologist about what to do about it also?  I'm overwhelmed today about where to go from here.

Everything in the REVISED path report indicates that it is 3mm IDC, no angiolymphatic invasion, low mitotic count (0/10), grade 1, and the margins were "widely negative"... makes me think that just Tamoxifen (if that) will be the new recommendation.  It is my understanding that Grade 1 is rarely given chemo unless the oncotype score is high, and I have no reason to think my oncotype score would be high?  I still don't want to do Tamoxifen, and would really need a compelling reason to think it will help my chances of developing bc in the remaining breast.

I don't even know where to start trying to obtain a 2nd opinion for anything.  I guess I need to call my insurance company tomorrow to see what I'm allowed to do.  It's a very "in-network-only" type of HMO.  

Any advice welcome!!

Deirdre1

I agree it's a bit confussing but there are lots of cancer center that do second opinions - I called my breast surgeon and told him I wanted a second opinion on the tissue slides themselves...  he asked me if I had somewhere in mind or should he choose... I told him that I wanted them to go to Vanderbilt.  Again there are plenty of places that have expertise in breast cancer and by the way I did get a slightly different read from Vanderbilt.. after that came back I switched bs and so that was my second on actual physical approach to treatment..    Your insurance may not provide for a second opinion (outside the organization that holds the HMO) but I didn't care I needed the information and so I paid out of pocket (it was $300.00) After everything had settled down I approached my insurance company and they ended up picking up the costs...  It was important to me to not let the insurance company guide or control the doc's and facility that I used..  Good luck and I hope you have more comfort from a second opinion...  Best,, Deirdre

cycle-path

Xmas, in general insurance companies like second opinions. I'd be a little surprised if they wouldn't support your having second opinions.

As far as pathology, a source was suggested to me by someone else on these boards -- Dr. Michael Lagios. http://www.breastcancerconsultdr.com/about_dr_lagios.html. I didn't use his service because my situation was pretty clean-cut (no pun intended!) but I did consider it.

You know, since your situation is now one of IDC, you might consider posting on the IDC boards. Since you are facing the possibility of oncotype and chemo, the ladies there would probably have more wisdom of relevance than we DCIS folks have. 

jklmtl

Jade, I am in the same position as you, sort of. I had a sterotactic biopsy that intially came back DCIS and ADH. I had the needle loc where they placed the wire for a lumpectomy on March 7th. That tissue came back High Grade DCIS with comedo necrosis and cancerized lobules (not sure what that means). Difference is that now I am going for an MRI and unlike you, I was told that the MRI would be better at detecting the DCIS to see how invasive it is. 

I am 38, premenopausal (just had a baby,he is now 5 months and was nursing him and had to wean wuickly for the surgery) , mom of 5, nursed ona nd off for 10 years, otherwise healthy, fit and  vegetarian. I am seriously considering the MX if not DMX but don't think my surgeon will go for it. It will depend on the results but he is trying to be conservative and I just want these things gone. I am in Kaiser so can't really see other surgeons. Someone did send me a link to a oncologist surgeon (I have not even seen an oncologist yet) that might see me at no charge. I will wait until after the MRI tomorrow and seeing the surgeon on Tuesday before I decide to go see her. I don't have any of my pathology reports on hand. Just being told things, not given the paper work. I have requested through medical records to get copies of things

Hope things go well for you

Jodie.

PS - I did have the BRCA testing done and came back negative for both. I have no breast cancer in my family HX 

XmasDx

Thanks Deirdre and cycle-path - Dr. Lagios is one I had researched before surgery and wish I had perhaps gone ahead and done it, though it was $600 out of network for me.  I may still go ahead and do it.  Or find somewhere in network. 

Oh, and Happy St. Patrick's Day Deirdre!

cycle-path

jkl: aha, Kaiser, that's another matter. I don't know a lot about them but I suspect they could be an exception to the "insurance companies like 2nd opinions" rule.

My understanding of the MRI is that it can find potential cancers that mammos cannot find. It's not possible to do MRIs on everyone (as with mammos) because it's too expensive (and the dye used can be hard on the liver in the long run), but MRIs are generally believed to be considerably better at finding breast cancers. So once they know you have one breast cancer, they do an MRI to see if there might be others.

Do let us know what they say after the MRI. We will be keeping our fingers and toes crossed! 

Deirdre1

Thanks XMasDx!  Happy St. Pat's to you too!  (I guess my name gave it away..  I hope you can still do the second opinion because it can take some of the edge off of making decisons!!1  Best, Deirdre

angelfromabove

Hello Jade~

I was in similar situation with DCIS in January...grade 3, comedo necrosis.  I had to have mastectomy because the DCIS was extensive.  But it was not as bad as I ever imagined from an appearance stand point!  I am 40 and was afraid of the cancer and the surgery.  Luckily, it was skin sparring and an expander was immediately put in. Nipple was conserved as well.  So, I will have reconstruction soon and am very pleased.  I didn't really have a choice...dr said because it was so extensive, a lumpectomy really would have left breast looking more disfigured.  Good luck and the best to you. It has been a month post surgery and I am doing very well!  take care

mikita5

jadeblue: I, too, had DCIS, high grade, comedoneucrosis. Had genetic testing. Came back negative. Oncologist said mx not necessary, but went ahead with  bilat mx with immediate DIEP. This was 2 yrs ago. I haven't regretted it yet. I am a worrier and couldn't deal with lots of tests and waiting.   After mx, pathology came back with 2 more places with DCIS that didn't show on tests.  Other breast was healthy.

 Sure, I DO miss my breasts, but it was a trade off for more peace of mind. My family is loaded with BC and my Mom died of ovarian cancer.

I would do it all over again...  I wish you peace in deciding what to do... Make your decision based on what makes you feel peaceful.  You'll know when you decide.  Mega hugs and a quick recovery with whatever you choose to do.

Kathy

Ma_rta

hai everybody, my name is marta, i living in Canada, montreal,

i just get result from my lumpectomy (February 15, 2011) the result :

histological type: Papillary carcinoma with infiltrating mucinous differentiation, multifocal.

tumor size: 1.1 cm maximum diameter

SBR grade II / III

distance between the infiltrative tumor margin and the closest (in the mastectomy specimen): 1 mm

lymphatic invasion / vascular: Unidentified

type of DCIS: papillary and papillary solid, no necrosis with foci of microinvasive carcinoma, nuclear grade 2 / 3 (quota intraductal solid difussion) nearest margin: 0mm

TNM: PT1C NX MX

 can anybody share with me 'cos my doctor suggest me to do masectomy (by next week), i'm 37y/o he told me better i've BMX

thank you

marta

jadeblue

@ Ma_rta: I'd say to get a second opinion ASAP. It sounds like your margins are too close for comfort, but that leaves re-excision or mastectomy as possible next options for THAT BREAST. If the other breast is clear, the choice of having it removed or not is really up to you based on your comfort level and willingness to follow up regularly and possibly face the stress of going through this again on the other side. Just because you had this in one breast does NOT mean you'll automatically get it on the other side or have it again in the same breast once it's been properly treated.

I know your doctor wants you to have the greatest odds of remaining breast cancer free, but BMX is a big step and not necessarily warranted in your case as you have a relatively small affected area on one side only. Don't rush into it if you're at all uncomfortable with it. As you may have learned from this thread, the women who have the best outcomes are those who are most comfortable with their treatments (because they helped CHOOSE them, instead of feeling pressured into them). Keep us posted, and GOOD LUCK!

-Jade (1 week post-lumpectomy and still AWOL on the pathology report, but probably about .8 cm of high-grade DCIS with some sort of micro-invasive something-or-other)

Juliechicago

Hi,

I have a DCIS question...

I have a history of bc- twice now. 2000 IDC left breast. 3.5cm.  Stage 2, no nodes. ER/PR-. Lump, rads, chemo AC x4.  2008 very rare new primary in same breast. 1 cm, Stage 1, no nodes.  Mast w/ implant recon, CMF x 4.  

Mamm on right breast has just revealed calcifications:" New focus of microcalcifications, pleomorphic, with some linear forms of calcifications noted.  No associated mass density seen DCIS must be strongly considered."  I am to have a stereotactic biospy tomorrow.

MRI 7 months ago did not note those, nor any other issues beyond a 3mm area that has remained stable for over a year.

Question is this-- as I research DCIS, many speak of a size of it-- 1 cm, 2.5cm etc.  This report is telling me there is no associated mass. Just the calcifications.  How is the "area" for lack of better term determined then?

Ironically- I had made up my mind to go forward with a prophy mast on this side as I underestimated my ability to deal with the constant worry/screenings.  I obviously do not have results yet, but know that I will go forward with the mast either way.  This will push things up.  I'm hoping--- that this would be the extent of the treatment needed.  I know there would be a sent biopsy done and that micromets could be found- but there is less likelihood with DCIS-- and if there is no discernable mass?    I'm very well versed in IDC, but this confuses me a bit.  Did most of you avoid chemo? (I'm TN- so no tamox as option).

thanks....

-julie

XmasDx

Julie, LOVE your avatar.

MRI's see "areas of enhancement" which may be DCIS.  My MRI report stated that "enhancements" were seen - now these enhancements can be DCIS, they can be inflamed areas post-biopsy, a trained radiologist can hopefully tell the difference, but my understanding is that can be difficult.

My report states" There is segmental enhancement involving the outer-lower quadrant of the middle and anterior one thirds of the left breast.  This site of enhancement corresponds to the recently diagnosed DCIS.  This enhancement seems to indicate that the patient has rather extensive malignant ductal pathology involving the anterior, the middle and portions of the posterior one third of the outer-lower quadrant of the left breast.  The AP dimension of this enhancement is approximately 63mm.  There is a linear component located along the posterior margin of this segmental enhancement that extends cephalad in the left breast.  It measures 27mm in length.  This is best appreciated on the reformatted sagittal images..."

I quote all of this only to show how the reports are worded and to point out that my bs's decision for a uni-mx was based SOLELY on the paragraph above.  Prior to this report, we were planning lumpectomy.

As long as you have pure DCIS and no IDC you will not need chemo.  It is not used as a treatment for DCIS, as DCIS is by definition noninvasive.  

If IDC/micromets/microinvasion are found, then depending on the pathology of the IDC you would probably do the Oncotype test to determine if chemo is recommended.  But hopefully all they will find is DCIS!

A lot of times (80% I think??) microcalcifications are not DCIS, but are B9.  So your stereotactic core biopsy could still come back benign.

Good luck with your biopsy tomorrow, I will pray for benign results!  

jadeblue

JulieChicago: Ah, sorry you're having to deal with this after all you've already been through. I hope this new development does nothing more than reaffirm (and perhaps slightly accelerate) your decision to proceed with MX. As XmasDx pointed out, many microcalcifications are B9 and yours could be too. (Do you know what Birads classification they gave it?) The "linear" (branching) calcifications are suggestive of DCIS, but they don't know until they know. If it's low- or medium-grade, or even high-grade DCIS, odds of microinvasion are probably 20% at most. And -- you're correct -- most DCIS lacks an actual lump, so they measure the area in which they find microcalcifications. In many women, this can be widespead throughout the breast (hence the necessity for MX). Mine was pretty well concentrated so I tried a lumpectomy and am waiting to hear if the margins are good (the surgeon seemed confident they were). I can totally understand revisiting MX for the peace of mind it brings. Good luck with yours! I hope that nothing more is needed for you to be forever cancer-free!

-Jade (1 week post-lumpectomy and still AWOL on the pathology report, but probably about .8 cm of high-grade DCIS with some sort of micro-invasive something-or-other)

Ma_rta

hai everybody, ^-^ greetings from montreal

today, i meet breast specialis to have other opinion, u right jadeblue to do MX is up to me, need time to think about it never do it in one day or week

tomorrow, i'll do MRI to check more details, friday will meet breast specialis again which today he told me that he'll have meeting regarding my case and will inform me friday afternoon to make decision whether MX or else

thanks ladies

dragonflymary

Dear JadeBlue,

I did have bilateral mx for DCIS.  On the final path report there was much more DCIS than showed up prior to the surgery.  In the "good" breast there was LCIS and ADH, which is a marker for a recurrence.  I couldn't take Tamoxifen so that's why I opted for the BMX.  It is a very difficult choice and not for everyone, but I am very happy with the direction things have gone and with the reconstruction.  Mostly, I never have to have another biopsy, ultrasound, mammo, MRI or needle poke again.  I truly hate all that testing and am so glad not to have to keep going back for more.  Good luck with your decision--it's a tough one. Dragonflymary