high grade DCIS

kime,

9 mm isn't tiny but it is small.  It's less than 1 cm.  So that's good!  To put it in perspective, I had a large amount of DCIS - somewhere between 7 cm and 9 cm.  Mine was larger than most, but it's not uncommon for women to 2 cm or 3 cm of DCIS.  So 9 mm is not a lot.

I'm not sure why your doctor is suggesting the sentinel node biopsy.  Whenever DCIS is diagnosed with a needle biopsy, there is always the possibility that some invasive cancer might be found once all the affected breast tissue is removed and examined under a microscope.  This happens in about 10% - 15% of cases. If invasive cancer is found, then an SNB needs to be done.  But for pure DCIS, an SNB is not necessary. 

For those who have a mastectomy for DCIS, because an SNB can't be done after a mastectomy, often an SNB will be done at the same time as the mastectomy, just in case some invasive cancer is found in the final pathology.  But for women who are having lumpectomies, this isn't necessary.  If invasive cancer is found, the SNB can be done later.  Since any removal of lymph nodes creates a lifetime risk of lymphedema (which is a condition that remains for life) and requires caution in the use of that arm for the rest of your life, you might want to question whether the SNB is really necessary.  Certainly the risk of invasion is higher for those who have high grade DCIS, but with such a small amount of DCIS, I'd guess that your risk is probably no higher than average. Perhaps your doctor is just overly cautious, or perhaps he feels that your risk of invasion is higher.  Whatever the reason, you should know.

Since the SNB is not mandatory, this should be your decision.  Without knowing more, let's say that the risk that you might have some invasive cancer, thereby requiring an SNB, is around 10% - 15%. The risk of nodal involvement if a microinvasion is found is around 10%.  So this means that as you sit here today with a preliminary diagnosis of DCIS, your risk of nodal involvement is probably 1% - 1.5%.  The risk of lympedema from an SNB is about 3%. 

A couple of things to be aware of if you have the SNB.  While the node can be checked during surgery, usually this is a quick check that will only catch larger amounts of cancer. If there is only a very tiny invasion into the node, this may not be discovered until a more thorough pathology review is done in the days after the surgery. Many women who have come out of surgery with a clear node are surprised to find out later that the final pathology report does mention nodal involvement.  This is very unlikely in your case, because your diagnosis at this point is pure DCIS, but it's something to be aware of.

The other thing to know is that from a recovery standpoint, most women find the SNB surgery and recovery to be more difficult than the lumpectomy (or even a mastectomy).  With the SNB, your underarm area and possibly the top half of your arm may be numb for some time (days to months), and you may experience sharp shooting pains, tingling and sensitivity as the nerves regenerate.  The lumpectomy itself is usually not very painful and the recovery is usually quite easy, although you may feel mild pains in your breast over a period of time as the nerves regenerate and as the breast tissue moves and fills in the empty area. 

Kime,

I'm glad that Beesie was able to help (I always look for your posts Beesie because you do a great job with explanations).

I think there are multiple ways to describe your upcoming surgery.  Proceedurally, I had the same as you - They removed the area with the known DCIS, along with tisse around the area.  My surgeon called my surgery a partial mastectomy, because I had no "lump" to "ectomy"   (Sorry, I'm laughing at my own lame jokes).   I've not heard of a Excisional Biopsy after a previous biopsy has confirmed (non-invasive) cancer.  You can call your surgery anything you'd like. 

Beesie is also right on about the recovery from the surgery.  I too had SNB with my surgery to remove the cancer.  I was high-grade, w/ necrosis, 2cm.  Doc thought we might have to go back in anyway so he was "saving me a surgery".  I understood all my options, and decided to go ahead with the SNB.  I had more pain with the SNB site than with the area on my breast.  I had 6+ weeks of radiation, now on tamoxifen, and I'm 21 months out from surgery.  I still have some pains, but they aren't terrible, they dont' last longer than an hour - a day at most, and I can usually calm them with Tylenol.  I had some issues with radiation burns, so I think my nerves under there are just very angry, and every once in a while they let me know about it.

Finally, you have found a wonderful resource here.  Use it often.  Ask questions, or just read what others have talked about.  This has been my life line a few times.  My best to you.

Barbie

I had DCIS high-grade same as yours only in the right side.  There were some other scattered suspicious spots in the same side.I will tell you what I was told when trying to decide what to do.  You dont have to have radiation or go through medical induced menopause if you have bil mastectomy.  Dont have to have mammograms, but infrequent MRI is a good idea.  No radiation - that would have been 5 days a week for 7 weeks.  And you get perky boobs the size you want......within reason.  After meeting with oncologist, general surgeon, and plastic surgeon I decided to have bil mx with immediate reconstruction.  Nodes were done at the time of mx, then tissue expanders put in place all in one surgery.  I do not regret the decision.  Still working on some of the reconstruction stuff, but I feel it is the lesser of the evils so to speak.

As far as pain and recovery from bil mx...it was basically pretty easy,  The hardest part was remembering to keep my hands down to my sides and not reach above my head.

I did my BRCA after my BMX.  The test results would not have changed my mind.  I had decided to do the mx but wanted to know BRCA for my daughter.

I had my left mastectomy with the SNB 9 days ago. A lumpectomy + radiation was not an option for me due to the size and grade of my DCIS. If I had the choice I would do the mast. and reconstruction anyway. The effects of radiation on the skin, the immediate menopause, and the worry of it coming back in that breast would outweigh dealing with reconstruction. BTW, I have had implants for 4 years for cosmetic purposes so that may make the reconstruction thing easier in my mind since I've been through that part of it. Take care and check in often. This is only my second day on this site but it already feels like a part of my life.