Scared and confused-- please read

My mother was recently diagnosed with DCIS, grade one, size 2mm.  Her surgeon was absolutely wonderful, kind, and compassionate.  She explained that the surgery was successful and they removed everything.  She also explained that it is such a tiny dot and everything has been removed, she also said she wants to take this to the tumor board and mentioned that it may require reexision, it may require tamoxifen, or radiation, or none.  She said she would let her know what the recommendation is in two weeks.   After meeting with the surgeon, my mom then met with the oncologist who ordered the Oncotype DX test (we are still waiting for the results).  Until this diagnosis, none of us have ever heard of DCIS, and now it’s taking over our lives.  The pathology report is so confusing.  I thank you all so much for your posts, it has been so comforting to read and learn so much here.  My mom is a strong independent woman, and I respect her and support any decision she makes and want her to have the most information so she can feel empowered by her decision, and not pushed one way or the other by fear or lack of knowledge to make a decision thats right for her.  Forgive the long story below, but I wanted to tell of our recent experience and would really appreciate any advice or feedback.

After my mom’s surgery and meeting with the surgeon to explain her pathology report (still struggling to understand), she was then scheduled to meet with the Oncologist; her next appointment was with the radiation oncologist for a consultation, which turned out to be a really scary and uncomfortable experience.  As soon as we went into his office he addressed my mom by her case, saying “I remember you, we talked about this in the tumor board”.   He began talking a mile a minute, at one point during his speaking (10 minutes into it) my mother interrupted to ask a question, which he responded with “let me finish my "shbeel", we’ll get to that".  While he continued to talk, my mom started coughing uncontrollably, all during her cough attack he kept speaking. I got up and I asked her if she was ok and immediately asked him where I can get some water.  I ran back to the waiting area and got her some water, which helped her temporarily before she was coughing again.  The RO then said it must be something in the room making her cough, and said that he was also feeling something in his throat too, so he moved us into a tiny examination room down the hall and closed the door.  Once we were in that room he began with “I’m going to start you on 33 treatments of radiation followed by three boosts, I’ve already told the nurse we would take a blood test, this is just to determine you aren’t pregnant, so be sure you go to the 2^nd floor, also I see all my patients on Monday, so you will need to come in early on Monday”.   My jaw dropped, I was really shocked that before she could ask a single question, before we even received my mom’s MRI results (which by the way he didn’t even know she did an MRI!), before she even received her oncotype score, he had already determined on his own, that this is what was going to take place starting next week. What happened next really scared me, suddenly my mom began asking him to please open the door, she said she couldn’t breathe, and I immediately took her arm, grabbed her things and escorted her out of the room, she looked pale and said she was feeling nauseous and needed fresh air, I told him I was taking her outside and we would be back.  All he cared about was getting her to do the blood test done, that he actually said “Let me ask a nurse to get you a wheel chair so we can get that blood test first”.  I said no, she needs to get some fresh air NOW.  As soon as we were outside, in the sunshine, sitting on a bench outside of the center, the color returned to her face and she was feeling much better.   This has never happened to her before, and it really frightened me.  I just want to say that my mom is healthy, no other health issues other than this recent DCIS diagnosis.  My mom said she didn’t want to go back to finish the appointment, so we left.

A week later a nurse calls to schedule her “simulation”, my mom told her that she did not agree to any tests or radiation therapy, and she was simply there for a consultation and to get more information and recommendations as was suggested by her surgeon.  The nurse was really annoyed and then asked her why she did the blood test then!  My mom informed her that she never did the blood test!  Shortly after that call, she received a call from the RO (this was almost a week after the office visit with him) asking her if she was ok and what happened, he was suddenly concerned.  My mom explained that she felt faint and dizzy in the stuffy room; she also informed him that she was there for a consultation and wants to wait for more results before jumping into any treatment decision.  He asked if she had talked to her surgeon after the appointment, she informed that she did not and has an appointment with her next week.

From what I have read on these boards and from what her surgeon and oncologist have said, there is no reason to rush into any kind of treatment, whether it’s additional surgery, radiation or medication.  I want my mom to feel empowered by having all the information she needs to make the best decision, and not crippled by fear and rushing into treatment before getting all the facts.  We are also going to seek a second opinion once we have more of the results back (MRI and Oncotype test and hearing more from her surgeon regarding margins).  I have read a lot of positive things here about Dr. Lagios and we might consider him.  Please let me know what advice you have. 

Connie07, what a nice compliment, thank you.  I agree, I also think it was a panick attack, she recovered from it soon after we left.  That is a fantastic way to look at it, "divine intervention"   she certainly felt that her body was telling her to get out and thankfully we did. 

Beesie, thank you so much for taking the time to respond.  My mom is afraid that she is getting pushed for what she understood is very low grade and tiny.  The path report was really confusing but what I could make out from it was exactly what the surgeon said, grade 1, 2mm (the size of the tip of a crazyon!).  I will post the particulars of the report tonight and would love any feedback.  Thank you for provididing the link to your last post, really helpful and we will most certainly begin the process for a second and maybe even third opinion if necessary.  DCIS is so confusing in that there seems to be such diverse ranges of diagnosis with so many people getting the same level of treatment.  My mom is very worried about radiation because it is her left breast, also she is 51 and postmenopausal, with no history of BC in her family.  I hope that we have more clarity on Tuesday.  Also, any idea why they give an MRI after the surgery ?  We are waiting for those results as well as Oncotype results. 

proudtospin, thank you for sharing your experience, that is good you got out of there.  I've read stories of people in all sorts of medical situations where they felt uncomfortable and stuck through and only regretting it later.  my mom is so stressed from experience she doesn't want to go back.  I really hope that we get good news from the surgeon and oncologist next week because my mom has pretty much decided she is not doing radiation or tamoxifen. 

Sandie, thank you so much for your kind words and sharing your story.  I am really hoping that she is a candidate who can skip radiation.  She is telling me that her gut is telling her not to do it.  We are going to ask for the second opinion.  I think it would be beneficial to see what another hospital says.  I have heard great things about Dr. Lagios and we want to contact him as soon as we have the MRI results and the oncotype results, it would be interesting to hear what he says. 

I just want to thank you all of you ladies in this community for reading, posting, and providing feedback.  It is invaluable to people like us who have felt like the rug was pulled out from under us.  I have to say that the more we learn, the less fearful it is. 

The waiting is most stressful, my mom has an appointment on Tuesday with the surgeon and to get MRI results, however wants to call ahead to see if they have recieved her oncotype results, if not, she wants to reschedule for a few more days until those have come in.  In the meantime we've been trying to understand the pathology report.  I will post it and would sincerely appreciate any advice people can give in helping us understand it more clearly.  There are a few different reports, that talk about different things so I think that is why its been most confusing. 

Here is another report. (The first one is the report after meeting with the surgeon).

Surgical Pathology Report

Clinical History: Left breast excisional biopsy

Speciments Recieved: Breast Lumpectomy

Pathologic Dianosis:

Breast, Designated Left, Left Breast Excisional Biopsy with wire localization.

Ductal Carcinoma in situ with Grade 1 nuclei.

1 mm from the medial margin of resection.

Status post biopsy with intraductal papilloma, 2mm.

Fibroadenomatoid change.

Coumnar cell change with luminal calcification.

Comment:  The diagnosis of ductal carcinoma in situ is supported by the accompanying immunohistochemistry.  The case was reviewed with Dr. *****

Pathologist: ******

Gross Description:

Recieved fresh and designated "Left Breast Density" in an x-ray gid container is a yellow white fibroadipose tissue measuring 6cm from the medial to lateral, 2.7 cm in superior to inferior and 2cm anterior to posterior.  A needle localization wire is present.  A specimen mammogram is received.specimen is oriented by a short suture designating superio and long suture designating lateral margin. 

Specimen is inked in 6 colors sndard code .  The medial and lateral margins are submitted separately. 

Specimen is serially sectioned in sequential fashion from medial to lateral.  Core biopsy site is identified.  A clip is identified.  On section a cystic space measuring 0.7 x 0.3 x 0.5 cm is identified adjacent to the biopsy clip.  Adjacent to the cystic structure are 2 well circumscribed nodules measuring 0.2x0.1cm and 0.2x0.2cm.  On nodule measures 0.1cm the posterior margin Cslosest margin), the second nodule measures 0.2 cm from the superior margin (closest margin) The adjacent breast tissue has a dense gray-white fibrous appearance with focal areas of congestion. 

Procedures/Addenda:

Immunohistochemistry

Interpretation:  The Immunohistochemical staining pattern supports the diagnosis of ductal carcinoma in situ.

Results-Comments

CK 5--Negative

ER--Positive

The appropriate positve and negative external and internal controls perform as expected. 

Analysis: Paraffin sections are analyzed by immunohistochemistry.  Known positve tissues are tested with each antibody and examined to ensure reactivity.

Addendum Diagnosis:  Issued to add synoptic report to the case.

Addendum Comment: Synoptic Report

Speciment: Partial Breast

Laterality: Left

Procedure: Excisional Biopsy with wire localization

Lymph node sampling: None

Specimen Integrity: Single intact

Specimen Size: 6 x 2.7 x 2cm

Tumor site: No specified

Histologic type: Ductal Carcinoma in situ

Architectural pattern: Solid

Nuclear Grade: 1

Necrosis: Absent

Estimated Size: 2mm

Numer of blocks with DCIS/ number examined: 1/22

Calcification Present?  in non-neoplastic breast tissue

Margins:

1mm from the medial margin of resection

Beesie, thanks so much for your response. I think the surgeon felt the same way (that it was a very small margin) because she stressed re-excision after we met with her following the surgery, but hearing "DCIS" for the first time, we were not really able to absorb much of what the surgeon was saying other than "cancer", we were terrified.  Thankfully she stressed to my mom "you're going to be fine, we are going to need to do this and this to get you there, but you are going to be fine".  Those few words of reassurement really made a differance in what her mental state could have been if the information was delivered in another way, we are fortunate to have such a caring surgeon.

My mom definitely is willing to go for another surgery to remove more tissue if that means she can avoid rads.  We meet with the breast surgeon on Tuesday and will ask for re-excision to remove more tissue.  Glad to hear that your mom was in a similar situation and has done so well, fingers crossed that a re-excision for my mom will result in no recurrence as well, while everyone is different, it is always great to hear that others in a similar situation are going forward for years and are just fine.  Did your mother take tamoxifen or any other similar meds after her re-excision with no rads?