DCIS newly diagnosed with High Grade

LAstar, 2 of them had invasive. And again, I made my choice based on my careful thought and consideration. For one, I didn't want radiation if I could avoid it, secondly, I had high grade and cysts and fibrocystic changes so I knew in the future I would be getting abnormal mammograms, the wait, I just didn't want to have to go through all that stress. I realize it still could come back, but even my surgeon said before the surgery that without radiation and tamoxifen, I had a 20 percent chance it would come back in the right breast so I essentially eliminated that chance. Like I said, I have less than 1 percent it will come back, but that was in part too because I had clear margins and nothing more was found. Also, I can't have MRI's because I am highly allergic to the contrast so now he says it's not necessary unless I am having a problem.

Dear rovnick13, thank you so much for your kind words. Yes, I have never regretted my decision. So do the expanders hurt you at all? Mine are just so uncomfortable, but I realize it's only temporary. Yeah, no picnic for sure! That first day was beyond painful but I sure did learn all the things you can't do after surgery. I had no idea. I'm so much better now. Today is 2 weeks out and I am walking 1 1/2 miles for the race for the cure tomorrow. I'm also driving now. I wish you the best and let us know how you do with the final process. My prayers are with you as well, pink sister. Did want to ask, how old were you when diagnosed? I'm 52 with no family history. I had the genetic testing. All negative.

Mayk: I'm glad you are at peace with the decision. One thing I didn't know until I started looking for second opinions is that I could get a nipple sparing MX if I went to a surgeon who was trained in the surgery. It's more and more common depending on where you live. it's made a huge difference for me. Gook luck to you. It's a long road, but you will be fine!

Mine made it!

I think everything will go just fine...

Hello Everyone,

Seems like I am in a similar boat to Mayk:

Newly Diagnosed 9/25/2015.  Age 46, never had kids.  High Grade (3) DCIS with Necrosis on Core Biopsy, palpable lump LEFT side. ER-, approx. 4mm.

Not seen on Ultrasound or Mammography, even after lump was biopsied.  MRI with contrast now shows highly suspicious areas for malignancy in BOTH breasts (Jeez...what next?).  Waiting to have the RIGHT side biopsied under MRI now BUT, thought I would share this...

If you can wait until the optimal time for an MRI of your breasts (with contrast to make the tissue "light up"), you should do so on Day 7-12 (Day 1 is the first day of your period) of your menstrual cycle if you are pre-menopausal!!  Hormone activity can play havoc with images, and I was in so much of a rush to get it done I did not go at an optimal time.  Even my doctor marked it as Urgent.  Now due to a conflict in the Radiologist's report location of the DCIS (opposite on the report from where it was biopsied), and the highly suspicious area in the right breast (that the ultrasound cannot find), they are repeating the MRI.

I have researched the difficulties with diagnoses of DCIS, esp with dense breasts..and I am planning to wait until the right time (couple of weeks I think at max) to have it repeated.  I have also sent out blood samples for BRCA testing, which also takes about two weeks. Then I have the whole picture how to plan my surgery and treatment.  I would be horrified if I based my decision on the first tests, then found out after it was a less than optimal time and all I had to do was wait a mere 14 days or so.  I wanted to have a lumpectomy and radiation initially, but the high grade of the lesion with necrosis, along with ER- (so Tamoxifen is not recommended), the larger size of the tumor (don't know if it is 4mm or larger, or multifocal) and my age under 50 - my doctor recommended mastectomy.

The plastic surgeon said that he could start reconstruction immediately after a mastectomy, but they cannot do the same if you have had a lumpectomy with radiation first.  The radiation damages the tissue and the results are not good.  So dilemma there.

Also dilemma if I do or don't find it in the other breast.  If I don't do I leave it and worry for the rest of my life that I will have to go through the same mastectomy and reconstruction a second time?  If I am BRCA positive and at a higher risk do I take them both off and reconstruct, or if I'm Negative try to leave one intact if I can.

I am in a vortex of medical information (with unfortunately I have familiarity with...makes it worse sometimes..), decisions, worrying, sadness, anger, sympathy for my poor husband who is going through all this with me but it's tearing him up....I think I just need a good break with the final test results.

Does anyone have a immunity strengthening diet to prepare your body for surgery?  I am amping up my exercise to try to get in the best shape I can for this, especially if scheduled in the next 3-4 weeks.  May not be a cure, but at least will give me something to focus on besides the damn diagnoses and decisions.  Thanks!

Monarch17- and Mayk I'm sorry you ladies are having to go through this. I was diagnosed with high grade DCIS with comedonecrosis in my right breast but opted for a BMX. My family history helped steer me in that decision. I watched my sister go through treatments for her Stage IIIIb breast cancer at the age of 27. She's BRCA 1 positive and I'm not. It has been 11 1/2 years since then and she's doing great. I definitely kept up my exercise but also ate real clean. That meant lentils, organic chicken breast, lots of organic veggies and fruits too. The other thing I included in my diet was organic mushrooms specifically Maitake mushrooms. In fact I ate them so much that I have a hard time eating them now! I used a mushroom spray by Host Defense called Immune Support and never got sick even though I was around lots of people that had nasty viruses. I started back on the mushroom spray in September to prepare for my upcoming revision surgery this month. Remember to try to get a full night of sleep too! My heart is with you two. Hang in there.

I have small breasts and with dx of grade 2 multifoical DCIS of left breast, including two small tumors,(chest wall and middle of breast) too much needed to be removed to make a lumpectomy a viable option. So pleased to have had a DIEP reconstruction, an option that gave me what I wanted - not having to go through any more reconstruction once completed, nor having anything foreign in my body. Good that you are comfortable Mayk with your decision and wish you a smooth, swift recovery.

Hello Everyone,

Thank you for your response and offer for additional information!

I felt odd posting my story on an anonymous board..and I think you all can relate..I actually felt worse and more depressed writing down all the steps, and procedures and diagnoses that I have gotten to this point. 

But seeing the many of you that responded, I fell so much better I did now!  You women are a wealth of valuable information that no doctor can bottle, or ever give you the same kind of advice.

My position right now is the waiting game - Biopsy the right side small "lump" they think they see just to rule something out, then repeat the MRI on both again. Also wait for the BRCA results.  Decide.

I am so sorry that all of you have been going through this and the pain and discomfort and the life disruption it has caused.  I am nowhere near that right now and have only had a tiny core BX one time and a few blood tests and imaging - nothing compared the the surgeries that most have you have been through.  You are all a picture of strength, encouragement, and positivity to me in a time I really need it.

My doctors have been great, my husband so strong and supportive.  I admit I am having trouble telling my Dad (what parent wants to hear THAT about their kid..?), and the few true friends I have until I have all the pieces of the puzzle.  Plus I just cry in front of everyone when I talk about it so I feel like a wuss anyway..

This does help, thank you so much for that and keeping a site like this going! 

Hi, Monarch -- nothing at all showed up in the pathology of my right breast. I have a vague recollection that I may have had my MRI too soon after my period, so perhaps that was the problem. I think it's great that you have a team that is talking to each other and willing to get all of the info necessary to make the best decision! I definitely asked lots of questions too. I'm a statistician and took the time while I was waiting on my BRCA test results to do a thorough lit review on DCIS. My poor breast surgeon was amused but listened (you might be surprised at how out-of-date they can be on the latest research).

My oncologist told me something recently that I have not heard before. She said that it's thought that all DCIS starts out as ER+/PR+ but the hormone receptors turn off as the DCIS is ready to become invasive. Has anyone else heard this? I'll have to ask her for the reference. My impression is that having a second primary in the other breast is rare, but it certainly happens. I completely understand wanting to be cautious when the DCIS was so hard to detect with standard imaging. It will be interesting to see how the two MRIs compare.

Hi Mayk - Yes October will ever be etched in my mind too, it is Breast Cancer Awareness Month after all (and right after diagnosis I feel as if I am being bombarded with it!) Ugh.

LAStar - I just did a little research on the ER/PR + DCIS changing to -  prior to Invasion...there are a few articles that question this phenomenon, but nothing recent that I could find with a big enough study to show significance.  I understand the medical lingo and it made my head spin so I stopped looking at that one

I am wondering (unless the most recent MRI shows findings that recommend mastectomy (i.e. multifocal high grade lesions with necrosis)),

that if I chose a lumpectomy without having sentinel lymph node biopsy at the same time,

waited until the pathology came back as either a clear margin, or close or suspicious for microinvasion -

then if clear statistically no LNB would be required,

or if suspicious for invasion then I do the sentinal lymph node biopsy to see if it has spread.  If they could do frozen sections while I was in the operating room and diagnose any positive nodes then, then at that time they could do the node dissection if needed.

Find out those results before figuring out my next step as to radiation therapy or mastectomy with reconstruction.

Then I don't jump the gun and make a decision where I mess up the potential for a good reconstruction if needed.  I realize this will add another surgery into the mix, but I would consider two medium-low surgeries that might spare me of radiation, instead of one major surgery where reconstruction added to it may take as long as 6-9 months to fully recover and get a normal life back. I'm 46, very athletic and am terrified of radiation and the idea of over 6 months of recovery with tissue expanders and the reconstruction. Just grasping at what I can right now. 

I appreciate any input anyone has about this, based on your experience.  Actually putting all this down is helping me get a grasp on all the decisions I need to make, depending on my upcoming test results.

Some doctors will inject the blue dye, mark the sentinel nodes with titanium markers, then leave the nodes to be taken later only if the pathology indicates a problem. If it's true DCIS, then there is no node involvement. I had 2 nodes taken at MX and an additional node taken at a recent reconstructive surgery. I was told there is only a 2-3% chance of getting lymphedema, but I think those statistics don't consider Stage 0 LE which is still a hassle and painful. I've had a lot of LE aching in my left arm just in the past week, the worst that it's been. It's something has to be managed for a lifetime.

The learning curve of BC once having a diagnosis to what next to choose for treatment, in a relatively short period of time, is steep. I've experienced for myself and read of others having fear run the process only later to realize, particularly when we present with low stage, a over treatment, throw everything at it including the kitchen sink decision, that was perhaps not a sensible approach. It's ok and normal to be scared. Lymphedema is a one-way condition, yet, the "ideal" set-up to be on that path is to have: 1.) high BMI; 2.) node clearance; 3.) radiation treatment. There are many women on these discussion threads who suffer from lymphedema (a number are able to manage it and many find management elusive for a host of reasons and the impact on their lives is devastating) and mainly, they have had one, two or all three.

If a person is athletic or have a sport they regularly peruse that particularly requires upper body strength, when the time comes to deciding surgery options, this should be taken into account. There is some insightful, up-to-date discussion on this somewhat active thread titled: Topic: Fitness after BMX and implant reconstruction question: https://community.breastcancer.org/forum/58/topic/833931?page=1#idx_10

Forward action will come in the fullness of time, when all test results are complete with full disclosure of their meaning. I found long, peaceful dog walks walks in the woods helpful, during that time in my life. Monarch17, find something that let's the stress release and helps you to balance during this anxiety-ridden and stressful time in your life.

Hi everyone! My update is that my MRI came back clear on my right breast (whew) and nothing else showed up in the left one, where the DCIS is located. I also found out that there is more of a family history of cancer than I thought.

My mom said, "Oh, my aunt died of breast cancer in her 40s." Um... Mom, that might have been helpful to know earlier! Plus a few more people on her side of the family had cancer, so I had the BRCA test and now I'm waiting for the results.

If the genetic test is negative, I'm on the fence. I understand the wish to have a bilateral mastectomy, since this feeling of uncertainty and fear is so pervasive and horrible, but I'm being told that the chance of recurrence is very low in my situation.

My thoughts are with all of you and I'm grateful not to go through this scary time alone!

Nina

So I was dx with DCIS in April, put on Letrozole, just informed I have IDC. Also have Axillary tumor dx in April. Surgery in two weeks. In six months on Letrozole my armpit tumor and DCIS "mass" have shrunk to half the size. I cannot understand why my oncologist did not call it was it is IDC in the first place. It says on my original report - no invasive component identified on specimen. But I also have a turmor in my armpit, so it is metastatic. Six months ago she called it DCIS and Metastatic Breast Cancer. Stage IIIA because it's matted. I do not know what matted means? I wasted my time researching treatment for DCIS as now it is IDC. For those of you that are in question about DCIS, also look at IDC.