Diagnosed with DCIS stage O, ? treatment recommendations?

Sideout360  --

I just completed my last Rad treatment.  Diagnosed with DCIS stage 0 in 2 places Right breast.  Lumpectomy June 13th --  20 Radiation treatments.  Will be taking Tomoxfin for 5 years.

I'm  doing good.   Great prognosis.  No lymph nodes,  clean biopsy -- Radiation is just to catch any stray cancer cells that may be starting DCIS 

I could have opted for Mastectomy  - with no radiation, but since the DCIS was contained in one area a lumpectomy worked for me.

I also participated in a Nationwide study to test Letrozole - anti estorgen drug used to shrink breast cancer tumors, but not widely used for DCIS.   I took Letrozole for 6 months and my DCIS almost vanished. In the surgeons words 'It vaporized"   another woman here at the same Breast  center underoging this study with DCIS had hers shrunk by a thrid.  

Good luck. 

Hi Sideout360,

Have you had an appointment with a breast surgeon or surgical oncologist? The first surgeon I saw was a general surgeon and he told me he would do a lumpectomy or mastectomy. I then went to a cancer center and met with a surgical oncologist. The information I received there was more informed and specific to my situation. I was encouraged to get a second opinion, and I'm glad I did.

It's a very personal decision. If you are stage 0, you have some time to do research, seek second opinions. Mastectomy is a major operation, and an good choice for some. I opted for a lumpectomy with oncoplastic reconstruction so both breasts would match. My cancer presented as calcifications on the mammogram.

I hope this information helps!

Hi, so sorry you have to be here! but glad you've found us!

Great advice from everyone and as everyone has said, it is a big decision, but it has to be your decision! Don't be influenced by what others tell you to do, other than to draw from their experience.

It can make a difference, which surgical option is right for you, depending on the size of the DCIS or area it covers in your breast. I see yours is also high grade. 

I decided to have a Umx when I was Dx with DCIS, stage 0, but I was encouraged to make my decision fairly quickly, because mine was grade 3 too.

Although it was unlikely, my surgeon couldn't be sure there would not be an invasive component, so he explained  that it would be remiss of him, not to do a SNB(sentinel node biopsy) at the same time. If there was any bad news in the final pathology, the breast tissue would be gone and that procedure could not be carried out afterwards. I was fortunate that there wasn't anything sinister in my final pathology. 

Due to other personal reasons, I took the gamble that I could avoid rads, by having the Mx. My Husband is a quadriplegic, we live in a small coastal town, which is hours away from the closest Radiotherapy facility, so I would have had to stay in another town 5 days a week during treatment. Not an ideal situation.

As well as avoiding the Rads, I didn't want to take the risk of not getting clean margins, and having more surgeries, if I'd had a Lx, I could have avoided the SNB, but I still figured the Mx, was right for me.

So for me, the Mx was definitely the right choice. I never considered reconstruction and have not regretted that decision either. 

I know it can all be a bit confusing, but I wish you all the very best in making the decision that's right for you.  

Hi sideout360. I'm very sorry that you have had to join our club - the learning curve for us poor innocent breast cancer newbies is wicked! I'm glad that you have found the BC Boards - you will find that this is a wonderful resource for facts/science/data, personal experiences of women that have walked the path before you, and just plain wonderful emotional support. 

I recently got the same diagnosis as you - DCIS high-grade. I do consider this a tumor, however. I was offered lumpectomy/radiation or mastectomy, and on balance I would say that lumpectomy was presented as the primary, most reasonable option. However, after doing my own research I have elected unilateral mastectomy with reconstruction. Surgery has not yet been performed - scheduled for early September. My choice was the result of several factors: (1) the fact that my DCIS is fairly large (estimated around 4cm) and was not visible on my previous mammogram 2 years ago - so it has grown quickly; (2) high-grade comedonecrosis = aggressive and more likely to recur; (3) more likely to be associated with a concurrent or recurrent invasive cancer; (4) I hate the idea of radiation and its downstream effects so am hoping the mastectomy will let me avoid it; (5) I tend not to consider myself a "lucky" person so will feel certain of the tumor's inevitable recurrence after lumpectomy; and (6) a 4cm tumor will probably end up requiring removal of at least 6cm of tissue, if not more - lumpectomy will take a big enough bite out of my breast that the cosmetic price will be high. Given these factors it seemed safest and best to simply bite the bullet with mastectomy/reconstruction. If my tumor had been 1cm and Grade 1, I absolutely would have chosen lumpectomy/radiation.

The aspect that I worry about most with the mastectomy is the sentinel node biopsy and possibility of lymphedema as a complication. This would be a professional and personal disaster for me, and things like never again shaving your armpit seem crazy and utterly out of proportion to the "precancer" diagnosis. Not to mention that lifelong avoidance of skin breaks in that arm would be completely impossible for me given my job, lifestyle, and that fact that it is my dominant hand/arm. I don't think sentinel node biopsy is routinely done with lumpectomy, so that was the single factor luring me toward that treatment path. I'm not sure how far you've gotten in your research and don't want to be the source of more distress, but with high-grade DCIS there is also a significant chance that they will find concurrent invasive cancer when they take out the DCIS tissue. If that is the case for me, I will likely have to undergo radiation and/or chemo despite my careful decision-making process. This part is very scary for me - though I want to think positively I also want to prepare myself emotionally for that possibility. I have been tested for BRCA mutations as a result of this diagnosis, and if those tests come back positive the plan will almost certainly change to a bilateral mastectomy.

This decision-making process was more complex than I ever imagined, and I wish you the very best as you work everything through for yourself. Try to take the time you need to research your options carefully, and you will find buckets of great info on this site. I also found the Mayo Clinic Breast Cancer book to be a pretty fast/efficient way of getting a basic BC education quickly. I am a newbie that hasn't even had her surgery yet, but if there's anything I can help with feel free to PM me! 

sideout360:

Not sure how it works with whole-body radiation, but with breast cancer specifically they will only do one round of rads. So my guess is that lumpectomy wasn't presented as an option for you because of that particular piece of your medical history. You will see mention of lumpectomy being performed alone without radiation, but this carries double the risk of recurrence so it seems to be done only for people with small low-grade DCIS and who are willing to accept the extra risk. This book is a great way to get a quick understanding of all your reconstruction (or not) options: http://www.amazon.com/Breast-Reconstruction-Guide...

Even the latest 2012 edition is already a bit outdated (e.g. it states that all silicone implants used in the U.S. are round, when in fact anatomical/teardrop implants are now available), but other than that it is a great summary and a quick read.

Annette47:

Thank you for that comment regarding invasive cancer hitch-hikers. I found it reassuring, and that is very welcome right now! :~)