Was just told DCIS isn't cancer

karen222

I was just told by my oncologist that my extensive, high grade, triple-negative DCIS wasn't cancer and that there's a 70% probability that it was overtreated. And this is 3 weeks after a modified radical mastectomy of my left breast and the day I'm going to have my drain removed! I feel floored, angry and discounted as a "real" cancer survivor. In addition, she says that I only need a clinical breast exam every six months and annual mammogram. This has stirred up all sorts of confusion for me. Any helpful thoughts??

Harmanygroves

Oh, wow....

2nd opinion.

Get an attorney.

You will also need a good counselor. 

 

I can hardly believe this.....Floored!

catlady2

Peace

 

I also was treated for DCIS.  The way it was explained to me is DCIS is non-invasive.  It will not spread throughout the body and you cannot die from DCIS.  But...if not treated it may turn into cancer in the future.  The treatments often seem extreme considering what DCIS is.  Truth is the percentage that develop into cancer in the future is pretty small, but so far modern medicine cannot totally determine exactly which DCIS will turn into cancer and which will not.  You are as much a survivor as anyone else!  The fear, anxiety, battle scars are real. But count your lucky stars that your diagnosis was DCIS.  I considered it a warning shot from my body to make sure and do everything I could to stay healthy.

I panicked when I was first diagnosed with DCIS grade 3 with necrosis and thought the worst.  I am now 2.5 years out from a lumpectomy with negative margins, and 16 treatments of radiation.  Just had my second clear yearly scan.  My doctor said she sees no reason why I should ever have a recurrence. I eat a plant based diet, walk 5 miles a day, do yoga and meditate every evening.  If standing on my head and whistling dixie would help better my chances of a long and healthy life I would do that too!

Please take care of yourself.   The medical profession is wonderful, but they get so caught up in the medical end they sometimes forget that there is a frightened person in front of them.  I hope that you have a good nurse navigator .  The navigator can help you find resources for information, etc.  

Or feel free to contact me.  

Here are some online places I used for information.  I read up as much as I could about DCIS and to be honest it took me a long time to come to terms with it all.

https://dcis411.com/

https://www.health.com/condition/breast-cancer/dcis-breast-cancer

https://drsusanloveresearch.org/breast-cancer-explained/newly-diagnosed/

https://breast-cancer.ca/comed-carc/

http://nomograms.mskcc.org/breast/DuctalCarcinomaInSituRecurrencePage.aspx