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??

catlady2

I am with you sister!

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

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

Judemo

Karen and catlady:  first of

Karen and catlady:  first of all, I am sorry to hear you had to go through all of your treatment karen.  I know that was tough and you are definitely a survior and have gone through a hell of a lot.  I hope you are healing well and feel better.  I had a double mastectomy a few weeks ago, so I feel for you!  

catlady:  Thank you for posting all the link to help educate us!  Very helpful!  

thora

Was just told DCIS isn't cancer

karen222

Nov 6, 2021

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??

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I was diagnosed with DCIS in 2013 and had a lumpectomy with no additional treatment . It was ER and PR+ and HER2-. In 2021, I was recommended to get an US in addition to annual mammogram. The US found a 7mm IDC that was removed in January 2022. This was in the opposite breast. Now, I am scared of a recurrence. I opt not to do radiation, but thinking of anti hormone therapy. I am 66 years young - still weighing options.