Where do I start

Michelle,

I'm glad you found this website.  There are wonderful people here who can help you through this time.  Your family and friends will be a great support, but when it comes to the nitty gritty, these gals (and guys) are the best. 

One thing I've learned through this whole process is that we are not crazy!  This diagnosis brings many questions and many treatment options and it is very, very normal to feel a wide range of emotions.  You'll find that some women choose to have double mastectomies and other choose lumpectomy alone or with radiation.  Your surgeon will help you understand your choices, and others will be along on this thread soon to tell you their stories.

From all I've read and heard, breast cancer in general, is a very slow growing disease.  I completely understand your concern about waiting 3 months.  Can you get a second opinion on that?  Through this whole ordeal, waiting is never fun, and always very anxiety provoking.

One last thing - I have found that those who have been through cancer treatment "get it".  As one friend of mine who had prostate cancer said: "my wife can take me to the station, but she cannot get on the bus."  This is so very true, as much as my family and friends are loving and supportive, there are issues surrounding cancer that only someone who is living it, or survived it can understand - this is where this website will be very helpful.

I'm sorry you have joined us on this journey, but I'm very happy you found us.

Barbie

Now I am confused. I believe you can have a DCIS "tumor." I had a 1cm tumor that was 70% DCIS and 30% IDC. But it was all together in one lump. Isn't it true that DCIS can grow a lump? I've heard of quite large DCIS lumps.

Does anyone know?

Accidental double post. 

Mary D.

Thanks, Mary, I thought so. I think we have to remember that "tumors" can be malignant or benign. They are not necessarily invasive. Not trying to be a know-it-all or anything; just wanted to clarify so that ottawagirl isn't unnecessarily alarmed.

On January 25, the spot magnification of my mammogram showed cluster microcalcifications at the two and four o'clock position. I had a needle loc and surgical excisional biopsy last Friday. Today I was diagnosed with intraducual carcinoma in situ and was told that they also found agressive comedo cellular growth which increases my changes of developing invasive cancer. Although they went all the way to my chest muscle and took out all of the calcifications with my biopsy, they want to do another surgery take more tissue - then follow up with a round of radiation and Tamoxifen. I don't have my post-op follow up until Thursday so everything I know I found out in the call from my doctor today. I found this site while I was waiting to have my biopsy but everything I read said not to worry about breast calcifications that they were usually nothing - so I guess I am just a little sad and taken aback today. I am just wondering if anyone here has had the same thing as I am not even sure if what I have is DCIS and if so what treatment options that you went with as I hear that many women opt for a mastectomy because of the side effects of Tamoxifen.

Rhonda

Rhonda

 DCIS is ductual carcinome in situ so yes if the doctor told you insitu that is what you have. What he likely wants to do is a reexcision. Because the cancer is so small- they can't really see it to remove it. It is only after the biopsy when they check for margins that they know if they got it all. The standard treatment is lumpectomy ( with reexcision if necessary,) followed by radiation and if the cancer is er + then tamoxifen may be suggested. If the DCIS is widespread or multi focal sometimes a mastecomy is the best/only option. Ask for a copy of your pathology report when you see the doctor.  Since your cancer is high grade they will almost certainly suggest radiation after you have finished with surgery. Good luck  I also only had a small number of microcalicifications. I had a 2 week wait from surgery to follow up visit and was told if it was anything the doctor would call me sooner. No phone call so  Imagine my suprise when  at the appointment she said I had dcis. I wish I had had a call- i would have been so much better prepared at that forst post=op

Trish

Hi, Sharona

One place to start is the DCIS topic on the home page. So much of this diagnosis is confusing, which makes it frustrating when trying to sift through treatment options.

Your radiation onc will probably recommend rads. If the reg onc is like the one I saw, he'll be saying the same thing (the one I saw didn't think not having rads was even an option). Fact is they don't know which DCIS will break through as invasive or have an invasive recurrence. Rads can cut your risk of recurrence by up to 50%, and with necrosis + high grade, you will definitely benefit. The benefits are less with tiny, low-grade DCIS, and that's where the debate is over rads or not. Originally, my rad onc thought that rads would be overkill for me, and that tamoxifen might be all I'd need. Long story short, the decision was made to go ahead. I did 33 treatments, finished up in December, and other than worse-than-typical fatigue and a brain like a sieve, did just fine.

As it turns out, I have some uterine conditions that might mean that tamoxifen is a no-no, so if I'd gone without rads, I'd be playing the woulda-coulda-shoulda game round about now. The doc I saw for the 2nd opinion on rads said it best: fight it with what you can now, this is not the time to be saving it for the game (what might happen).

Talk to the doctors, look at the resources here, and ask whatever questions you need.  If you search through the topics here, Beesie has made some very useful and informative postings on studies and the ins and outs of DCIS. Take care.

Pam 

Dear Pam,

Thanks for your response,

It sounds like you really know your stuff, maybe I am just in denial.  I am so tired of this already.  Did you have a lumpectomy? Do you work, have kids,...?  Did you work through the treatments? I am in need of tools for handling this.  I hate to drag my husband through it all.  He has been wonderful, however, I have never felt so self-absorbed.  Whatever advice you can share is so appreciated.

Sharona

Ottawagirl,

I took 3 surgeries to clear margins on the right breast.  2 surgeries to get a close margin on the left breast.  Both are DCIS.

My MRI showed two other likely seperate tumor areas (they had 160% uptake, with extremely rapid plateau and drop off during the contrast MRI), but biopsies of the these areas were negative, so MRI's do show false positives.

I am 48 and diagnosed in 9/07.  Haven't started radiation yet.

Take care.

I am new to all of this, the term "cancerhead?" Please define, thanks

Sharona

Gulfwater....LOL...haven't heard that one before! Have you found any other good cancer boards?? I've tried a couple but not as good as here. I think I'll have cancerhead for a while!

Sharona....it's good to try to keep a sense of humor.....that has saved my butt so far. Just remember to only take one step at a time, try not to overwhelm yourself, get comfortable with one decision then move to the next..........with this DCIS you do have time......that's a good thing.....even tho we may want to rush, it gives us time to learn, choose and accept.

This is the breast cancern section of the message boards where I discovered the term "cancerhead":

http://www.hystersisters.com/vb2/forumdisplay.php?f=224

The breast cancer section isn't too large as the whole site is more related to gyn problems -- then again it's all kinda related.  Anyway, therefore the name Hyster Sisters.  I had those parts out 18 years ago almost to the day (TAH/BSO on 3/01/90).  I breezed through it.

How it's related for me . . . I started Premarin 0.625 mg. the day after the hyst surgery, 3/02/90.  App. 12.5 years later on 11/18/02, I swallowed the last one of those little pills.  That was the day I got my DCIS diagnosis.

Mary D.

Michelle, hello from Toronto!  It sounds like you are handling this really well.  I know that the wait is a pain, but with DCIS you really do have time.  Use this time to your advantage if you can.  Although you don't know your surgical choice yet, see if you can get a referral to a plastic surgeon so that you can discuss reconstruction options, should you decide on a mastectomy or a bilateral mastectomy.  I had multifocal and multicentric DCIS.  I didn't want to have a mastectomy but my MRI convinced me that there was no way to get clean margins with a lumpectomy.  So a mastectomy it had to be.  But the good news from the MRI was that my other breast was completely clear.  So I went ahead with a single mastectomy with immediate reconstruction (an expander at the time of my mastectomy & then later, an implant).  And to optimize symmetry, I had an implant added into my 'good' breast.  I took 2 1/2 months from diagnosis to surgery, but it was time well spent. 

Rhonda, as Trish said, yes, what you have is DCIS.  DCIS often presents as calcifications rather than a palpable lump.  Calcifications are very common - about 60% of women get them - and most of the time, they are harmless.  But, in about 10% of cases, the calcifications represent DCIS.  Unfortunately you were in that 10%, as was I and most of the others here.  I actually had calcifications in both breasts at the same time.  The biopsy on my right breast came back as DCIS; the biopsy on my left breast came back benign. 

For high grade / comedo necrosis DCIS (Rhonda and Sharona, this is what you both have; Michelle, do you know the grade of your DCIS?), then if you have a lumpectomy, radiation is the norm and is definitely not over-treatment.  The purpose of radiation is to reduce recurrence risk.   Recurrence risk after a lumpectomy for DCIS can vary hugely, depending on the amount and grade of the DCIS, and the size of the margins.  If you have a small (<1cm) low grade DCIS with good surgical margins, your long term recurrence risk might only be around 5%.  In this case, radiation may not be necessary.  But if you have high grade DCIS or DCIS with comedo necrosis, if it's multi-focal or there's a large amount of DCIS, and if the margins aren't large, your recurrence risk could be as high as 40%.  Even with good margins, high grade DCIS can have a recurrence risk in the range of 25%.  While DCIS is non-invasive and has a 100% survival rate, if there is a recurrence, 1/2 the time the recurrence will come as invasive cancer.  So then you don't just have DCIS anymore.  For this reason, it's really important for anyone who has high grade DCIS to do what they can to cut their recurrence risk.  As Pam said, radiation can cut recurrence risk by 50%.  That takes a 25% recurrence rate down to 12.5%.  Tamoxifen can reduce recurrence risk by another 40%.  Now the 12.5% is down to a very reasonable 7.5%.  This is why radiation and Tamoxifen are the standard of treatment for high grade DCIS, for anyone who has a lumpectomy.

With a mastectomy, the options are a bit different.  A mastectomy for DCIS reduces recurrence risk to 1% - 2%.  Since the risk is already that low, it's generally considered that radiation and Tamoxifen are not required.  For someone who has a single mastectomy, Tamoxifen might be suggested not because it's needed to reduce recurrence risk but rather as a protection for your remaining breast.  Still, in that situation, it's usually considered optional.  My oncologist discussed it with me but actually suggested against it. 

Hope that helps you all!