IDC and DCIS diagnosis on Tuesday

dlm217

I was diagnosised on Tuesday and I feel so lost and confused by the whole thing.  It was a surgeon who gave me the diagnosis.  She said she doesn't see any way around a mastectomy of the left breast and reconstruction.  I met with a plastic surgeon recommended by her on Wednesday and feel even more overwhelmed now.  I asked her if I would see any other dr. and she said no.  I have since scheduled an appointment with an oncologist for 10/10 to get a 2nd opinion.  Anyone else in a similar situation?

lewing

DLM, so sorry about your diagnosis; I so remember that feeling of bewilderment and confusion and just being lost.  Your post caught my eye because I also had a mix of IDC and DCIS in my breast; I was originally planning on a lumpectomy, but when additional imaging (MRI and MRI-guided biopsy) showed the extent of the DCIS, I wound up with a mastectomy.  The change in plans was more traumatic for me than the original dx, and I felt very rushed and pressured and overwhelmed.  Suddenly, the surgeon I thought I had such a great rapport with started to seem to me to be a jerk.

All of which is a long-winded way of saying: please don't let yourself be pressured or rushed into decisions about reconstruction (whether, when, what type).  You've just been diagnosed; everything's a blur; you need and deserve time to research your options, think them through, and figure out what's best for YOU.  That includes making sure you're totally comfortable with your surgeon.  In the emotional turmoil that follows a cancer diagnosis, the natural inclination is to want to take it out NOW , , , but the fact is, the cancer has been there for some time already, and a few more weeks before surgery aren't going to make a difference in your prognosis.

Have you thought about seeking out a second opinion from a different surgeon(s) -- possibly both a breast surgeon and a plastic surgeon?  I ask because the oncologist will likely give you a lot of good information about adjuvant medical treatments (and by all means, you should meet with an oncologist before surgery to get your questions answered and treatment options mapped out), but may not be the best source of a second opinion on *surgery,* which is your main concern right now.

(For the record, I did get a left mastectomy -- also a full axillary dissection because of one stupid positive node -- and did not choose reconstruction, either at the time of my initial surgery or later.  I miss my breast, but am comfortable with my decision.  Finished chemo just a little over three years ago, and am doing great.)

Hugs and good wishes to you,

Linda

Halah

Last year I was in the same boat you are in now. with IDC and DCIS tumors. A breast specialist (internal medicine) dx me and recommended a surgeon. Then the surgical oncologist ran a number of tests and recommended a mastectomy. I did NOT want surgery and went to talk to an oncologist and he said I needed the surgery, no way around it. I opted for no reconstruction at the time and knew it wasn't for me because of the number of hospital and doctor visits that it entails. If I were a young woman, however, I might have opted for reconstruction. But I am good with my decision now.

There is a lot of information here on BCO about reconstruction and also going breast free. Check it out, ask questions, best of all give it some "soak time". Let yourself absorb all that has been going on with you with all of this.

You will do fine! It's all doable. Here I am and I am okay. You will, too.

Mindy 

jazz3000

If your surgeon has all the tests and info regarding what's happening with your breast and has determined the need for surgery I would bet it's the correct judgement call. I think your surgeon was telling you she and the plastic surgeon will take care of what is needed for removal and reconstruction. The oncologist is more of the cocktail maker for the final diagnois which will be after the surgery and pathologist has determined exactly what is going on. One step at a time is all they can do and right now the removal of the breast is the first step. Prepping for the reconstruction the second step. Generally within 7 to 10 days after surgery you will receive the full scope of what's going on as the surgeon will pass the tissue over to the pathologist who will determine type size kind and stage. That will be relayed after surgery because there is no other way to determine the full extent of what's going on without the procedure.

The oncologist will probably share that he or she will base their determination on the pathologists findings. If you don't need chemo or radiation that would be great. If you do it will be determined after surgery. 

Sad to hear yet another sister has fallen prey to this insidiuous diease. Keep in touch with us and don't be afraid. You can do this though it can be confusing and disconcerting to say the least. It's kinda like slipping down a waterfall without a barrell when we first hear the news but a day at a time, and baby steps, will get you there. You just keep asking the questions you have to everyone and anyone and it will be all right, Hugs and Hopes...

squeak

Yes, I've been recently diagnosed, too.  September 16 of this year, so just a little while ago.  I found out last week that I have both IDC and DCIS.  I thought I had just IDC and for some reason, finding out that I have both really threw me for a loop.  The surgeon that I saw seemed to be pushing for mastectomy and reconstruction, although he said that lumpectomy and radiation had the same survival rates in my case. 

I am seeing another surgeon this Thursday.  I don't think I will hear anything new regarding my treatment, but I may feel more comfortable in her care.  I've heard very good things about her. I am beginning to absorb the diagnosis and information now.  It's hard, but I'm feeling like I can make more of an informed decision now than I could last week, even.  

Hang in there!   Please don't feel pressured into treatment that you don't feel comfortable with or with a doctor that you don't trust. 

VictoriaB

Hi,

I was recently diagnosed too (July) and the whole process is overwhelming. A good nurse gave me some advice--take things one day, one appointment, one test at a time. I was diagnosed in July with IDC and DCIS, and had a lumpectomy and re-excision. I decided to get a second opinion with another surgeon, as they did not get clean margins in the first two surgeries. I think Lewing is right, you need a second opinion from a surgeon. Local control, then systemic control. 

Hope this helps!

deniseday

I was diagnosed with IDC and DCIS on April 23, 2011. It's funny how we remember these dates.  The births of our children, the day we got married, and the day we got our diagnosis.  I finished 8 rounds of Chemotherapy on Sept 16.  Four AC followed by four taxol.  I'm scheduled for a double MX with immediate reconstruction on October 28, 2011.  I was/am happy with the decision to do the MX because I didn't want to take any chances on the cancer coming back in the other breast.  My follow up MRI on Friday only showed only 10% shrinkage however and now I'm worried that they may change my surgery plans.  I'm ready to get this bad stuff off of my body. 

Denise

TifJ

I too had IDC and DCIS. I had 1 area of IDC and 1 of DCIS that were connected by a small band of DCIS. My surgeon gave me the option of lumpectomy or mastectomy, but since both areas were at the top of my breast- she couldn't guarantee that I wouldn't look sunken in on top as there is not as much fat on the top of the breast as there is around the sides and bottom. Also, it all must be removed in one chunk- you can't take out little pieces here and there. I was told I would need chemo either way (I am triple negative). I chose a mastectomy and at least eliminated the need for radiation. I hope it all goes well for you.

dlm217

Thank you.  I'm sorry that you all have or have had to go through this.  I just can't believe my only option is a mastectomy when they don't even see a mass/lump.  I know I am in deniel and need to come to terms with it.  I have an appointment with an oncologist on Monday to see what she says and will probably then get a 2nd opinion from another surgeon and plastic surgeon.  I am just really tired though.  This is exhausting mentally and physically and I haven't even had the surgery yet.

VictoriaB

Hi DLM,

One day at a time. Call your surgeon's office and request a copy of your pathology report (try to get it and review it before Monday). You need to understand exactly what type of cancer you have (stage, tumor size, grade, etc.) so that you can make sense of this. From what I have read, some types of cancer do not present as a mass, like LCIS--lobular is more like a "sheet" than a tumor so it doesn't show up as much on imaging. I just met with a second opinion doc who gave me new info regarding my diagnosis (which is IDC/DCIS/LCIS).

For what it's worth, I wish I had gone to an onc BEFORE I had surgery. Also, definitely get a second opinion for surgery. I have and I am so glad that I did. Different doctors have different ways of communicating, some have better bedside manners than others, and some have different philosophies that determine what treatment they want to give you. Your are right, it is exhausting! Hang in there!