Newly Diagnosed DCIS

speech529

• I was diagnosed with DCIS after a stereotactic biopsy on March 24, 2010.  There is only one duct involved.  I have not read the path report--my doctor called me on Saturday to give me the news.  I had never heard of this and did not know enough to ask many questions.  I have an appointment at the breast cancer center affiliated with this health care system in 10 days.  I have a few questions--
• Should I get a copy of my path report prior to this appointment? 
• What should I ask the doctor at this appointment?

I have not had genetic testing, although this was suggested a few years back.  My mom died of ovarian cancer; my aunt had breast at an older age.  There's lots of other epithelial cancers in the males on my mom's side.  Should I insist on this testing?

I have very small breasts (A/AA).  What are the chances I will have a mastectomy vs. lumpectomy?  

This is all new to me and I am worried that I have to wait this long to see the doctor.

Thanks for your advice. 

laurakay

Of course you're worried.  Can you get more info from someone before you see your doctor, because from my experience I don't think there's much you can know until you get a lot more info.  As far as mastectomy vs. lumpectomy, it's my understanding that sometimes just the biopsy you had can get all the DCIS, so it's not really so much the breast size as the DCIS size.  I also have relative with the gene, but decided to wait until I'd dealt with the DCIS--next I'll get the gene test.

I am so thinking of you, and praying for your peace of mind!   

StacyJoy

I was diagnosed with DCIS on Dec 8, 2010.  This is a non-invasive stage 0 breast cancer.  This is a slow growing BC and is not life threatenting at this stage so do not be worried about waiting 10 days.  I went 7 weeks from my diagnosis to my "elected" mastectomy.  I was given the opportunity to have a lumpectomy but with that I would have needed radiaiton and reconstruction would not look normal and there was a chance it could come back.  I elected the mastectomy with reconstruction, I had the mastectomy on Jan 26, 2010.  The anticipation was sooooo much worse and scarier then the actual mastectomy.  I am a small C.  I don't recall the size of my lump but the DCIS was in a large area of my breast so a lumpectomy would have been a loss of 25% of my breast (a whole quad).  I would have worried every day about it coming back,  Yes, take all your reports to the appointment, mammo, pathololgy, what ever you have.  Demand a Braca gene test, I tested negative.  My grandmother was a BC survivor but I am told it is mother/sister/daughter as far as hereitary. 

 You should first test for the braca gene, then you can decide if you want a double mastectomy,  I wuold have done a double if I had tested positive.

 Ask your doctor about the chances of it coming back if you opt for a lumpectomy, and what kind of treatment you will need,  With a mastectomy I did not need chemo or radiation, i was cancer free after the surgery,  If it is only one duct then maybe a lumpectomy would be the better choice for you, your doctor will be able to tell you that.

 Best of luck to you.

aces

speech529,

 I think it is a good idea to have a copy of your path reports.  I kept a copy of my mammograms, biopsys, mris-everything.  It made it much easier when I was getting second opinions.  I will also tell you I had very small breasts and had DCIS close to the chest wall and because of that my surgeon recommended mastectomy.  He said it is hard to have a good cosmetic result with a lumpectomy on a small breasted women.  I am sure that you will hear different things from different docs.  I would suggest getting several opinions and go with whatever you think is right.  I am learning that it is a very personal decision.   I would suggest genetic testing.  I had a strong family history, mother with bca, grandmother with bca and ovarian but was BRCA negative.  I am thinking of you, to me the most stressful part of the journey was all of the decision in the beginning.  Once I decided what I was going to do and scheduled surgery, I felt better.  Praying for you.......

sweatyspice

I would suggest getting copies of both your mammo report and your path report, and learning what they mean.  We can help you with that.  That's the only way I can think of to get more information before seeing your Dr.

Things you might want to know:  size, grade, hormone receptor status, is there only one area of concern, specific type of cell (some are more aggressive than others), whether or not there is evidence of "comedonecrosis,"  are there calcifications?

Some Drs recommend a presurgical MRI to make sure there's nothing else going on, some think it's overkill and do not believe in MRIs. 

It might be worthwhile getting the genetic test before you make any surgical decisions, but only if you think the results of the test might influence your choice.  It's definitely something worth discussing with your doctor.

Unfortunately, and with respect to Laurakay, to the best of my knowledge women do not generally have a stereotactic biopsy and no further surgery.  You will most likely have a lumpectomy or mastectomy.  That choice will be determined by the size of the DCIS in relation to the size of your breast, the rest of the factors in your pathology, and your personal preference.  If you have really small breasts, it's hard to say.  (I had D's when all this started, so it's hard for me to know what's possible in your case.)

If you have a lumpectomy you will probably have to consider radiation, if you have a mastectomy you will most likely not have radiation - but either way, it will depend on the specifics of your pathology.

If your DCIS is hormone receptor positive, you might choose to take anti-hormonal drugs as the last stage of treatment.  If your DCIS is hormone receptor negative, that won't be available.

Ask about the chances of recurrence if you have a lumpectomy v. mastectomy - that will also depend on your particular pathology.

Don't worry about waiting to see the Dr.   You're probably reeling from this news, it's an ugly shock and hard to deal with - BUT a few days (or weeks) won't make a difference.  With DCIS you have time to ask questions.  You do have to deal with this, but it's not an emergency.  Try to keep breathing.

And it's often a good idea to get a second opinion.

Many of us had difficulty sleeping (etc.) when we got the news, if that's happening to you consider asking for some antianxiety pills.  They can help.

That's all I can think of right now.

Best of luck to you! 

dsj

I just want to say that you are at (in my experience) the worst and scariest time.  I think once you have seen your doctor and talked through the results, you will feel better.  I also want to add that I have small breasts and had a lumpectomy and, except for the scar, I can't see any difference in my breast from before the surgery.  So, as Sweatyspice says, it depends on the size of the DCIS.  One other piece of advice; you should certainly read your pathology report if you want to before the doctor, but I would say don't try to anticipate too much what it means.  I did a lot of reading online but, in the end, I didn't really understand my case until I had talked to the doctor.  It's good to be informed and for many of us it helps you feel in control.  But I think it's important to remember that you are not (or at least I not ) an oncologist.  You won't really know what your results mean until you've talked it through with your docor.  I also second the suggestion to get a second opinion.  I ended up talking about my DCIS with 6 doctors (2 breast surgeons, one oncologist, 2 radiation oncologists and my PCP).  Happily, they all told me the same thing, and that gave me a lot of confidence.    You should also check out the posts from Beesie on this board; they really explain DCIS well.  Good luck and hoping for the best.  d

speech529

I am so thankful to have found this website/forum.  Thank you, thank you for taking the time to discuss your situations.

I go to a major clinic and they have a coordinated care situation, so all my records are there going back several years.  I don't think I could find a better place to go for care, but I would like to get a 2nd opinion for my own piece of mind.  

I know that I am stage 0, but I don't know the grade.  I also know that I am ER+ and PR+.  

 Thank you so much for your help.

KAR

Hi I just wanted to add that I had very small breasts too and had a lumpectomy which took out roughly 3cm of dcis.  This did not leave me deformed but definitely smaller than the other.  This might be something you ask your surgeon and oncologist about, how much they think they will take out and whether or not you will get a good cosmetic result.  I ended up needing re-excision or mastectomy and choose mast.  Good luck to you and hopefully you can get away with lumpectomy only, but if not the reconstruction techniques now are excellent.