We are 155,765 members in 80 forums discussing 123,377 topics.

Help with Abbreviations

All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Just diagnosed with DCIS Grade 3 - Age 28

Topic: Just diagnosed with DCIS Grade 3 - Age 28

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Mar 8, 2013 06:40PM

swearp wrote:

Hi All,

First of all thanks to all members for sharing your experiences here. It is certainly very helpful specially when I am also in the same boat. 

I am just diagnosed with DCIS grade 3 with 4.3 cm in left breast without any kind of family history of any kind of cancer at any level of family members on 4th March 2013. 

Just done with MRI and doctor suggested biopsy for 2 more areas. Those 2 areas does not have any corresponding calcification in mammogram. One area in the left breast and another in right breast. They are classified as bi-rads 4. My previous biopsy was bi-rads 5 for which pathology already concluded DCIS. 

While I wait for my biopsy to be done and results come out I want to ask and take some advise from you (Biopsy scheduled on 12th March).

I already seen one surgeon after first biopsy and she said wait for another 2 biopsys to come out before she can make any decision (although she said she is not worried about it as they will be -VE). Both receptors shows -VE in biopsy result and my doc has performed test for my genes (results awaited). Because receptors are -VE my surgeon said tamoxifen would be of no help. Yet no decision on treatment has been made yet.

Meanwhile I have taken an appointment at following locations  for second opinion. 

1 - UCSF (University of California San Francisco) breast center

2. Stanford Medical center - Palo Alto - CA

3. Dana Farber woman Cancer center - Boston 

4. MD Anderson cancer center Houston - TX - 

All these locations I found on usnews.com to be very good for cancer care. So wanted to definitely take an opinion from them.

My question here is am I on a right track? I live in San Francisco and will it be feasible to go to Boston or Texas for treatment? I am not concerned about expenses but I just want to know from you that is it s right decision to make considering follow ups and all. 

Also I was feeling lump for last 2 months before I opted for mammogram and now already diagnosed with DCIS. So my diagnosis has been done just a week ago but I know lump has been there for at least 2 months. How much of a safe time do I have before I opt for surgery? Not that I am planning to wait for it but still I want to know that couple of weeks are ok considering this extra biopsy and my travel time for second opinion and all. 

I am too young (just 28) for all these and worried about my future. I have also an appointment to fertility specialist because we were planning a kid later this year and here is the bump. 

All the wonderful women out here please give me advice - I know every case is different but still hearing from who has already went through is always a good piece of information. 

Log in to post a reply

Posts 1 - 24 (24 total)

Log in to post a reply

Mar 8, 2013 09:33PM windycityDCIS wrote:

Hi Swearp- I feel for you- its not fair to be dealing with this at age 28.  I'm 52 and I was diagnosed with DCIS grade 1 in December - it was diffuse (2 places 4 cm apart) so the standard of care is mastectomy with sentinel node biopsy. I have been followed as a high risk patient at Northwestern for many years because my mother died of cancer at 45 AND because there have been various benign lumps and microcalcifications on my mammos. I had already gone through the process of thinking through what i would do if i were diagnosed with DCIS when i had a stereotactic biopsy 8 years ago.  This is just to say that it was "easy" for me to process this and make the decision to have BMX and reconstruction b/c I have been bracing myself.    I wanted to get it over with and behind me, but I could have waited 6months if I had wanted.  I'm doing fine and adjusted to the "new me."  

I was still freaked out though, and I was a little comforted by the "patient guide" from my breast surgeons office that started out "Breast cancer is not a medical emergency; it is an emotional emergency."  Keep that in mind.  You have 2 great cancer centers near you and unless for some reason you end up with very different recommendations, I don't think you need to be traveling for a second opinion at this point. UCLA would be a closer option.  My pathology report was simpler than yours, so I didn't bother to get a second opinion, but if I did, it would have been at University of Chicago, which is 12 miles from me.

You might want to check out this cite for young women dealing with cancer too for emotional etc. support.  At 52, with a great partner and past child bearing years, the emotional issues are easier to confront and move beyond.  

http://www.youngsurvival.org/breast-cancer-in-young-women/overview/

I'll be hoping for you to get good news from your biopsies, but whatever happens, you will be able to deal with it and be supported.

Dx 11/15/2012, DCIS, Stage 0, Grade 1, 0/5 nodes, ER+/PR+ Surgery 01/07/2013 Mastectomy of one or both breasts: Mastectomy of my left breast; Lymph node removal (also called dissection): Lymph node removal (also called dissection) on my left side ; Prophylactic (also called preventive) mastectomy of one or both breasts : Prophylactic (also called preventive) mastectomy of my right breast ; Reconstruction of my left breast: Tissue expander placement; Reconstruction of my right breast: Tissue expander placement
Log in to post a reply

Mar 9, 2013 10:35AM Beesie wrote:

swearp, you got great advice from windycityDCIS.  I appreciate your desire to get to get a second opinion once your remaining biopsy results are in, but with the excellent facilities nearby, I don't see why you would need to travel. From my standpoint, and from studies I've seen, it is certainly preferable to be treated at a comprehensive cancer facility and to have a surgeon who does a lot of breast cancer surgery. However breast cancer is unfortunately a very common disease so any of us who live in a major cities usually have a choice of excellent facilities nearby that have the level of expertise that we'd want. As windcityDCIS said, you have a couple of good cancer centers near you, so there's no need to travel any further for your second opinion or for your treatment. 

I agree with windycityDCIS as well that DCIS - and breast cancer generally speaking - is not a medical emergency.  So you have time to get your second opinion.  Having said that, if you are comfortable with your surgeon and you know the surgical approach that you want to take, you could proceed with the surgery and then seek a second opinion afterwards, to review the pathology to ensure that the final diagnosis is correct.  A second review of the final pathology and a discussion of your options from there might be more meaningful than a second look and discussion based only on the biopsy sample.  

If you have the choice between a lumpectomy and a mastectomy and you are uncertain about what to do, you can start with the lumpectomy to see what it shows and get the second opinion afterwards.  Is the final pathology pure DCIS?  Are the margins wide and clear?  A mastectomy can always be done after a lumpectomy. Alternately, you may already know that you want to have a mastectomy, or the surgeon might recommend a mastectomy given the size of your area of DCIS; in that case, prior to surgery there will be other decisions about whether or not you want reconstruction and if so, what type of reconstruction. And if a MX is recommended but you don't want one (that was my situation), you may want to get the second opinion prior to any surgery to see if there is another option (for me there wasn't).  As you are waiting for your remaining biopsy results, this is probably something that you should be researching and making your decisions on.  Although getting a second opinion on the pathology and treatment plan can be very helpful and sometimes can lead to different options, if you choose to have or require a mastectomy, there will be a lot more that you need to be looking into vs. spending the time travelling across the country for a second opinion or getting 3rd and 4th opinions. 

Good luck with the remaining biopsies.  Hopefully they are all clear and you can get your second opinion and finalize your decisions. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Mar 9, 2013 08:37PM Cowgirl13 wrote:

Swearp, I also live in San Francisco and had all my treatment in San Francisco. Right now, I would suggest staying away from the computer and I wouldn't do anything right now until you have your pathology report...which could take up to a week.  Where will you be having your biopsy?

Dx 5/28/2009, IDC, 2cm, Stage IIa, Grade 3, 0/4 nodes, ER+/PR+, HER2+
Log in to post a reply

Mar 9, 2013 11:08PM mbordo wrote:

I think a second opinion is good - I don't think 4 are necessary (unless there is some disagreement between the original and second opinion).  I vote UCSF- they are NCI cancer center. I went there, and they agreed with everything my local medical team told me.  They are doing cutting-edge research and have some of the top researchers on staff.  I'm sure they could give you good fertility advice, as well.  You might want to get a pathology 2nd opinion w/Dr. Michael Lagios (also in SF) - he has decades of DCIS pathology research behind him, and he will give your slides a second look.

Surgical/treatment options need to wait until after your surgery and you know margin status etc. A few weeks' wait should not be a problem.  DCIS does not require that much urgency - gather your info, make an informed decision and move forward.  Best of luck to you!

Log in to post a reply

Mar 10, 2013 12:27AM swearp wrote:

Thanks windycityDCIS, Beesie , Cowgirl13 and mbordo for your time and advice, greatly appreciate it. 

I really appreciate your thoughts on second opinion and specially traveling across the country. We will definitely reconsider this. 

@Beesie & windycityDCIS, I can't thank you enough for your descriptive answers. I just got to know about DCIS last week and haven't done any surgery yet so not sure clear margin applies to me or not. Is it something reported in pathology lab?I live in Berkeley, east bay. During first consultation with surgeon, doctor did not talk about any specific plan of treatment until pathology report of remaining biopsies are out. 

@Cowgirl13 , I think you are absolutely right. I have done so much of browsing after this diagnosis that I am almost done now. btw would you mind sharing your hospital/Dr of treatment? Currently we are with Alta Bates of Oakland for initial diagnosis. Would you also recommend any breast surgeon in area?

@mbordo , It was a good suggestion to get a pathology second opinion with Dr. Michael Lagios - we were not aware about this doctor. I will try to consult him.

Couple of more questions to you ladies  

1) My pathology report says : ERA (IPOX) -VE(1+ in <1%) and  PRA (IPOX) -VE(1+ in <1%) 

    what does that mean?

2) My MRI report for confirmed DCIS says non-mass-like area measuring 4.3 cm AP by 3 X 3 cm in diameter - does it mean DCIS area is 4.3 CM or is it 3 CM ? I forgot to ask my doctor and google does not get me the meaning of "AP" here. I think this is too much to ask but still though of mentioning if someone knows about it.

I will soon update thread after I have my reports. 

Log in to post a reply

Mar 10, 2013 12:37AM Cowgirl13 wrote:

Swearp, I'd be happy to recommend a surgeon.  I just loved mine--Dr. Nima Grissom.  She's terrific and she has great people skills.  I'm thinking good thoughts for you on Monday.  If you can, even if you have to push yourself a little, get out and do some things that you enjoy.  Weather is going to be sunny tomorrow so I hope you get outside.

Dx 5/28/2009, IDC, 2cm, Stage IIa, Grade 3, 0/4 nodes, ER+/PR+, HER2+
Log in to post a reply

Mar 11, 2013 10:51PM swearp wrote:

Saw a doctor at Stanford and here is what she has to say:

"It is very unlikely that woman of your age (28) just has DCIS with 4 CM of mass. She thinks there is very likely invasive component associated with it". She did not jump on to any treatment plan as we are due for couple of more biopsies.

This sounds to me very aggressive and wanted to know your opinion. Is 4 CM area is considered too large ?

2 opinions we had so far are way out. Later one does not even think it is Stage 0. 

Log in to post a reply

Mar 11, 2013 11:08PM Cowgirl13 wrote:

Swearp, I don't think its agressive at all (if it were me).  4 CM is a large size and I would want it checked.  I think she is being very careful...if she didn't suggest this and perhaps several years out, or 5 or 10 years out, you found out it was cancer, how would you feel?

Dx 5/28/2009, IDC, 2cm, Stage IIa, Grade 3, 0/4 nodes, ER+/PR+, HER2+
Log in to post a reply

Mar 12, 2013 12:01AM beacon800 wrote:

I was treated at Stanford and they were very good.  Who did you see there?  It makes a difference.

The way they characterized your path report is different than what I usually see, but I think the ERA and PRA mean estrogen and progesterone receptors, respectively.  Trying to understand how they put it, it looks to me like these are "negative".  If so, that is a more aggressive type of dcis.  With those receptors negative, it is true that SERMs like tamoxifen are not useful. 

So you have a fairly large amount of receptor negative DCIS.  At either Stanford or UCSF they will likely test that sample for HER2 status.  This is new as they used to not test DCIS for Her2neu status, but I think they do now and in your case it is certainly a good idea. 

Hopefully it just stays as DCIS.  Even though the stanford doctor was suspicious, you just have to take the diagnosis you have at present and keep doing the testing to establish if there is anything else.  At places like Stanford and UCSF they really see a lot of weird and remarkable cases so they are cautious.  This is a good thing, though also unsettling.  BTW, while at Stanford I met a 25 year old gal who had so much DCIS that she needed mastectomy but that was ALL she had, just DCIS.  So it happens like that sometimes -young gal, large dcis, no invasive.  Let's hope that's how it goes!

LCIS, PLCIS. Dx 7/24/2009, LCIS, Stage 0, 0/0 nodes, ER+/PR+, HER2-
Log in to post a reply

Mar 12, 2013 07:27PM swearp wrote:

Thanks Cowgirl13 and beacon800 for your reply. Appreciate it.

@beacon800: They did test for HER2/neu status and looks fine in biopsy results. it says 

                      Fixation Time: 10% NBF -- 6 - 48 hours (HER2/Neu). 

Because all these factors are nagative she said there is no opther option but to give Chemo therapy which we believed is not an option for DCIS. 

@beacon800: I will write you a private message with other details. 

Thanks once again for your replies. 

Log in to post a reply

Mar 12, 2013 10:25PM Beesie wrote:

Chemo is not given for pure DCIS. 

With a larger area of DCIS, certainly the risk is greater that some invasive cancer might be found.  On average, about 20% of women diagnosed with DCIS via a needle biopsy are ultimately found to have invasive cancer once all the affected breast tissue is removed and analysed.  That's the average; the risk would be lower for women with biopsies and imaging that shows a small single focus of low grade DCIS and the risk would be higher for women with biopsies and imaging that shows a large area or multi-focal high grade DCIS.

If it is found that you have some invasive cancer, whether or not you need chemo depends on the size of the area of invasive tumor, whether or not there is nodal involvement, the hormone status (triple negative or HER2+ are more likely to get chemo for even small invasive tumors) and the Oncotype score (for those who are ER+) and your age.  At this point, with only a needle biopsy result showing DCIS, it's good to be discussing the options and possibilities, but it's premature to be assuming that invasive cancer will be found and that chemo will be necessary.  It's possible, of course, but it's also very possible that the diagnosis will be pure DCIS or that only a tiny amount of IDC will be found, not necessitating any change in the treatment plan vs. pure DCIS. I had a microinvasion of IDC and with a microinvasion, the treatment is the same.

By the way, to clarify the point about HER2, while HER2 testing may be done for DCIS, the results don't change anything. There have been lots of studies done on HER2 status and DCIS, and so far the jury is out on what it means.  Whereas with invasive cancer it is well understood that HER2+ IDC is more aggressive, there are no conclusive results to suggest this is true for DCIS.  It might be, but it might not be.  Some studies have shown it both ways (more aggressive and less aggressive).  The other thing to consider is that anywhere from 40% to 60% of DCIS is HER2+ whereas only ~ 20% of IDC is HER2+.  No one yet knows why more DCIS is HER2+.

swearp, what's your next step now?

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Mar 13, 2013 02:22PM swearp wrote:

Thanks Beesie for your response. Appreciate you repeating your answer again. ( I know you mentioned all these stats in one of your other posts to help people like us, thanks once again)

Update on Biopsies:

         - Let me start with a scenario: There was one doctor (very nice) who performed my Ultrasound, Mammogram and biopsy but when I went for my MRI she was not available to read my report (as she was on vacation) so she gave report to some other doctor to read who was working remotely at that time. That other doctor suggested that "Mildly suspicious non-mass-like clumped area in left breast other that what I already have which is biopsy proven) and Moderately suspicious non-mass-like clumpped area in right breast." This was at the extreme end of both breasts (meaning right most for right breast and left most for left breast)

         - When surgeon read this she ordered these 2 biopsis. 

         - When we actually went for biopsis the doctor who performed Ultrasound, Mammo and Biopsy was available and fortunately she was assigned to perform this biopsis (She looked like she was not in agreement with the doc who read my MRI). She clearly mentioned that in younger woman while performing MRI, MRI machine itself has some clips to hold breast in certain position and because those clips are tight sometime that area does not get blood and appear as suspicious area in final MRI ans she said this is very much possible in younger woman and with dense breast. She said if I see those are myself and only if I am satisfied I will perform biopsis otherwise it is not at all required. She also mentioned that there is no corresponding calcification in mammogram. 

        - Finally she updated me that in the left breast that area does not even appear so she did not perform left biopsy (it was anyways mildly suspicious) and because the other doctor was moderately suspicious about right breast I took biopsy for that breast but it is very well possible it comes as benign. She added if it was me and patient was not going for surgery (in my case I am for that 4 CM DCIS area) I would ask patient a 6 month follow up for something like this. 

       - So over all we got a relief with doctors favoring words. And she works closely with breast surgon. 

About stanford status:

       - Doc definitely said that there is no Chemo for pure DCIS but doc added "very likely they will find some invasive part because of my grade 3, age and tumor size." She also talked about Chemo because my receptors are -VE and tamoxifen is not going to work on me. 

       - In a way doc was very open and wanted to let us know that because I am young and looking at DCIS properties she wanted some aggressive treatment. Again doc did not jump on any treatment plan before biopsy results are out. 

Plan next:

              - We already saw a fertility specialist yest as we were planning a baby later this year ( and unfortunately this came along). He did some basic test with ultrasound and said I am healthy for baby and there should not be any problem unless you are getting Chemo. 

              - After my biopsy results are out we will consult Surgeon (my initial doc) and see what doc has to say about treatment and if required we will have second opinion if there is too much of difference. Because nothing is certain until I have surgery and have pathology report. 

              - Considering my breast are too dense and larger size even with 4 CM of tumor she said lumpectomy will be possible. That was even mentioned by Stanford DOC but very cautiously. 

Conclusion:

- Only one other biopsy is performed in right breast (result awaited). Left breast has already 4 CM DCIS. After results are out we will consult surgeon and will perform sergery. as of now with just one biopsy my ER, PR and HER2/neu are -VE

Question:

- While browsing, I could not find lot of DCIS cases with >= 4 CM of area (althouhg you ladies suggected me not to suft I could not stop myseft). Is is not so common? I know beacon800 mentioned she had seen someone at Stanford with big area and just DCIS and also Beesie you had large DCIS. 

- Doc did not perform another biopsy for left breast (she looked very confident) and said not required. Doc did check the area in MRI and did not feel so. Is it OK ? I really trust this doctor. Its the same who first found about my DCIS and the same who did my first biopsy without even authorization because things looked suspicious. 

Log in to post a reply

Mar 15, 2013 12:28AM , edited Mar 15, 2013 10:34PM by Fritoz

Hi Swearp,
I was diagnosed at 29 with grade 3 DCIS measuring 2.1cm in my left breast. I had a lumpectomy and have now just started radiation (4 out of 28 so far). Based on my age, family history, size and grade of the mass and margins my drs recommended either mastectomy or breast conserving surgery, radiation and tamoxifen. To me the options sounded pretty aggressive, so I got a 2nd and 3rd opinion, who all said the same thing. My cells were ER/PR + so I was told to wait at least 3 years before having any children (this was almost more devastating to me than hearing that I had DCIS).
For me, the part you are going through now, where there are so many unknowns and you don't yet have a plan, was the hardest and most stressful. Since you are dealing with DCIS, like everyone above has said, you have the time to research, ask questions and make an informed decision. Also, make sure you choose to go with a dr who you trust and have a good relationship with, because you will be seeing a lot of them in the upcoming months.
I know it really stinks to be going through this so young, I feel like a ticking time bomb with so many explosive years ahead, but with the right plan your risk can be brought so low and you can go back to living your usual life, at least that is my plan. I hope that helped a little... I found these discussion boards have been a wealth of knowledge and support, you are in the right place. PM me if there is anything else I can help you with

Dx 12/7/2012, DCIS, 2cm, Stage 0, Grade 3, ER+/PR+ Dx 12/28/2012, IDC, <1cm, Stage I, Grade 3, ER+/PR+ Hormonal Therapy Surgery 12/18/2012 Lumpectomy in one or both breasts: Lumpectomy in my left breast Radiation Therapy 03/11/2013
Log in to post a reply

Mar 16, 2013 02:38PM swearp wrote:

Thanks Fritoz for the post and wishing you a complete recovery. You are absolutely right this is wealth of knowledge. 

Update from my side:


1) My right breast biopsy came benigh - so nothing in right breast now

1) My gene testing came -VE meaning no mutation detected. Also ER/PR -VE and HER2 not tested yet.

2) I saw 3 surgeons so far and unfortunately opinions are not close enough.

    - Based in my age and size/grade of tumor 2 doctors think it is not just DCIS - they highly suspect there is invasive part in 

      it. 

    - Third doctor did not scare me at all - she said I can to Lumpectomy + Radiation and no lymph node removal and wait for  

      pathology report after  surgery.

    - 2 doctors who think this is not just DCIS has a different reasoning for this. One of them says she does not see non-mass-like

       area in MRI rather she sees a mass (in MRI report it clearly says non-mass-like area). Another doctor says she suspects

       more than DCIS because of my age grade and tumor size. She did not at all comment on MRI. 

    - I also noticed one of the doctors who suspects this as more than DCIS requested some tests like ultrasound, mammogram

      and Biopsy for both the breasts even if it is clear that right breast has nothing and left breast has biopsy proven DCIS.

      My question is do people do more that one biopsies for the same area (from may be different angle to get more diversed tissues) in case if the DCIS area is larger?  

Question:


1) Even if there is small invasive part in tumor does it change my decision of treatment? As of now I was thinking of Lumpectomy + Radiation.

  Please comment on this.


2) When I submitted my MRI report to other doctors they said the images were so small in number. For example regular MRI captures 14000 images and CD had only 1400 images. So whoever actually read MRI had access to all 14000 images but these 2 doctors who suspects more than DCIS had access to only 1400 of them.

Can surgeons comment that strongly just by looking at fraction of images?

Thanks once again for all your help and support in advance.

Log in to post a reply

Mar 16, 2013 02:56PM fredntan wrote:

If you need to travel due to BC treatment. go check out www.corporateangelnetwork.org.

Fran Dx 8/3/2011, IDC, 2cm, Stage IIIa, Grade 2, 13/17 nodes, ER+/PR+, HER2- Dx 10/2013, Stage IV, mets Hormonal Therapy Surgery 10/08/2012 Reconstruction of my left breast: DIEP flap; Reconstruction of my right breast: DIEP flap Surgery 09/09/2011 Mastectomy of one or both breasts: Mastectomy of my right breast; Lymph node removal (also called dissection): Underarm (axillary) lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my right side Surgery 04/03/2013 Reconstruction of my left breast: Nipple reconstruction; Reconstruction of my right breast: Nipple reconstruction Radiation Therapy 03/29/2012
Log in to post a reply

Mar 16, 2013 03:11PM , edited Mar 16, 2013 03:12PM by Annette47

One thing to consider is that you can always have a lumpectomy and then if pathology comes back more sinister than originally expected go back for a mastectomy.   You can't have the mastectomy and then go back if it turns out it was "just" a small area of DCIS.

Oh, and the presence of invasive cancer does not always mandate a mastectomy over a lumpectomy, especially if it is a small amount ... invasive cancer can often be treated with a lumpectomy plus radiation with chemo if necessary, and it's my understanding that the mastectomy *might* (but not always) prevent the need for radiation, but if chemo is recommended that would be independent of whatever surgery is chosen as it is designed to treat cancer cells that may have already escaped the breast.

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage Ia, Grade 2, 0/3 nodes, ER+/PR+ Hormonal Therapy Surgery 12/18/2012 Lumpectomy in one or both breasts: Lumpectomy in my left breast; Lymph node removal (also called dissection): Sentinel lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side Radiation Therapy 01/21/2013
Log in to post a reply

Mar 17, 2013 11:13AM windycityDCIS wrote:

My understanding is that (with DCIS)  until they actually remove the breast tissue surgically (lumpectomy/mastectomy) you can't rule out invasive cancer- meaning areas where the cancer has "breached" the walls of the ducts.  They have to get clean margins.  That's one reason lumpectomy is not the recommended treatment in cases like mine where there were two areas biopsied 4 cm apart.  They can't "see" the DCIS (not a solid tumor- just microscope cells) and they assume that there is probably more there in between the two areas.  So if they just do a lumpectomy, they often don't get clean margins and have to keep going back in and taking out more tissue until they get clean margins. So in that case, you end up having multiple surgeries and a bad cosmetic outcome.  Also, if they find invasive cancer after the surgical treatment, your diagnosis changes from DCIS to invasive cancer and the treatment plan probably changes.  So you probably aren't going to get the clarity you want until you want until after the surgery.   I know its scary- even though I knew i was at low risk for invasive cancer, I was scared about waking up from surgery and finding out that it had spread to my lymph nodes.  I was less concerned about there being a little invasive cancer b/c they were removing all the breast tissue, but I wouldn't have been thrileld about that either.

Dx 11/15/2012, DCIS, Stage 0, Grade 1, 0/5 nodes, ER+/PR+ Surgery 01/07/2013 Mastectomy of one or both breasts: Mastectomy of my left breast; Lymph node removal (also called dissection): Lymph node removal (also called dissection) on my left side ; Prophylactic (also called preventive) mastectomy of one or both breasts : Prophylactic (also called preventive) mastectomy of my right breast ; Reconstruction of my left breast: Tissue expander placement; Reconstruction of my right breast: Tissue expander placement
Log in to post a reply

Mar 17, 2013 12:29PM indenial wrote:

If you are eligible for a lumpectomy, then whether or not there is an invasive component wouldn't generally affect your surgery decision. Invasive or not, you can have a lumpectomy + radiation. You just want clear margins, and with larger tumors or multiple tumors, this may not be possible. I had a 2cm IDC tumor and was originally considering lumpectomy but once we discovered other areas of cancer in the same breast, I needed a mastectomy. I ended up with 3 areas of IDC (the others were much smaller) plus a 3cm area of DCIS. They couldn't have gotten all that & gotten clear margins with a lumpectomy.

Where non-invasive/invasive really affects your treatment is in considering chemo. If it is in fact pure DCIS, there would be no reason to have chemo because the cancer would be considered contained to the milk ducts & almost impossible for it to have spread elsewhere in your body. If you have an invasive component, then we know that the cancer has escaped the ducts and may or may not have also spread elsewhere in the body. Often with clear lymph nodes they won't do chemo but in patients our age (I'm 30), many doctors take a more aggressive approach. You won't really know whether this is the case for you, & the doctors can't make a solid recommendation, 'til after your surgery when they have your final pathology report. 

And I'm so sorry to hear your pregnancy plans have to be put on hold, it really is devastating. I do have one child but we had been trying for 4 years for baby #2... because we already had fertility issues, I may not be able to conceive after chemo. We can't even try for several years now, and it's heartbreaking.

Hugs to you. I hope it turns out to all be non-invasive.

The human spirit is stronger than anything that can happen to it. ~C.C. Scott Dx 2/11/2013, IDC, 2cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 07/04/2013 Surgery 02/27/2013 Mastectomy of one or both breasts: Mastectomy of my left breast, Mastectomy of my right breast Chemotherapy 04/10/2013 Cytoxan (chemical name: cyclophosphamide), Taxotere (chemical name: docetaxel)
Log in to post a reply

Apr 3, 2013 10:56PM swearp wrote:

Thanks everyone for your valuable time and input it certainly helps.

Just wanted to update the thread that finally I am scheduled for Lumpectomy on 8th April. I hope everything goes fine.

Thanks.

Log in to post a reply

Apr 6, 2013 01:37AM , edited Apr 6, 2013 12:59PM by deb1973

Hope your lumpectomy goes well and that you get good results and have a speedy recovery.  

These predictive comments from the docs at Stanford and elsewhere are confusing to me. I have an aggressive grade 3 tumor type with a large amount of DCIS (a 6x7 cm area was taken out on excisional biopsy), moderately young age, & the pathology report on the excisional tissue suggested only DCIS.  Did Dr. Lagios weigh in? - I am awaiting a second look opinion from him.

I am trying to prepare for some potential surprises following the final mastectomy (which has yet to take place), but now I don't know what to think except that I am even more convinced that it is important to get second and third look opinions on the path to make sure nobody misses anything. 

MD Anderson also has a Moon Shot project where they are working on finding additional treatments for triple neg BC so wherever you get treatment, you might ask them to look into this for you. 

You may also want to encourage your surgeon to aggressively go after clear margins since some surgeons may be trying to preserve breastfeeding options for a younger patient. My surgeon took out a spot that was double the size of the suspicious area on the MRI (a valid approach) and the impacted area still turned out to be larger than that - or at least it turned out that there were no margins on it.

Hope everything goes well!  Please keep us all updated on how you are doing.

Log in to post a reply

Apr 13, 2013 01:17PM , edited Apr 15, 2013 08:36PM by swearp

Lumpectomy went good and no real pain after 5 days. However I still feel lump like area where my original DCIS had palpable mass. I assume it is because of surgery and will go away eventually.

After surgery doctor said "no real surprises". Doc said he could see some more calcification but he did not remove more tissues because he did not feel like. My husband was not sure of the exact words but somewhat on those lines, doc was in very hurry after surgery. 

Anyways we will know the pathology result in couple of days.

Also my HER2/neu status is not known yet (my mistake in previous post). 

Thanks everyone for your support and help here. 

Log in to post a reply

Apr 13, 2013 02:07PM , edited Apr 13, 2013 03:51PM by deb1973

I am glad you are doing well post-lumpectomy and hope you get good results (squeaky clean margins) on the pathology.

Thanks for answering my other questions in private message.

Please take care of yourself and try to enjoy the sunshine this weekend. 

Log in to post a reply

Apr 13, 2013 05:10PM proudtospin wrote:

I had DCIS grade 3, did the lumpies (it actually took more than one surgery to get clear margins, sneaky stuff that DCIS) but did my full span of rads, and now coming up on the end of my 5 years of aromasin!  Healthy and doc calling me cured!  It is scary for sure.

I upped my time at the gym as soon as rads were over.  Instead of 2 X a week, been doing 4 X and working with a trainer

the gym, is my form of mental theapy? I so recommend taking care of your body and your mind.

Best of luck and hope all turns out for you

iris Dx 6/2008, DCIS, Stage 0, ER+
Log in to post a reply

Apr 16, 2013 03:39PM swearp wrote:

Got final pathology today, here is what it says:

1) All other margins are good (0.5CM) except close margins on skin (0.1CM) so my doctor is going to take some tissues out from under my skin

2) They found multi foci micro-invasion within 4.5 CM of DCIS which is less than 1 mm (at least at 5 places) (they could not find exact size though) in fact the micro-invasion is so small that they said it will be hard to perform ER/PR/HER2 testing on those samples. They will attempt it anyways. 

3) Because they found micro-invasion, they will perform Sentinel Node Biopsy during re-excision.

Not best news but still ok news. Doctors said prognosis will be same as a pure DCIS