Diagnosed with DCIS: How do I decide on treatment?

Posted by tctredwell1 @tctredwell1, Aug 23, 2022

I was diagnosed with DCIS. I have to go in for a breast MRI with contrast tomorrow to see how active the cancer is. If it’s contained and not very active, do I have to have a lumpectomy?

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@pgsuer

Hello Heydon!
I have been looking for this comment. I had an aesthetic breast reduction surgery last June 2023. DCIS Grade 3 In the pathology was found in a 1.2cm area in one of the left side tissues. I had a gene test, mammogram, and an ultrasound screen came back all clean. There is no sign of it. My Radia-oncology suggested me to have either 16 rounds of Radiation or the pill. I am so confused. And I am thinking to choose the quality of life too. But still! What if?

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What if indeed❣️ I can only tell you my story and my families stories. Two brothers a cousin and myself all had radiation. Mine was 20 years ago and does not even resemble what they do now. My cousin had 5 weeks and my husband had 6 weeks (prostrate) my brother had 3 weeks (lung) overwhelmingly the side effect was fatigue. Then recovery from fatigue. In my case it was a small part of treatment and frankly the easiest, of the multiple surgeries, chemo, radiation and endocrine therapy program.
When it did recur, I did not have to ask myself if I had done everything I could to prevent it. I was 35 and quite a few family have died young from cancer, I didn’t want to join them.
If I was given your choice I would take the radiation because it is short duration and done, unlike the endocrine therapy which can go on for years. Also I could save that tool in the box for later if I needed it.
I could feel like I covered that “what if” without a significant disruption to my quality of life.
Are you an active person? Do you have family you can discuss this with?

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@shaya

I was Diagnosed DCIS Stage 0 in early Feb this year. I found out I was 5th woman in my family to have Breast Cancer so I did Bilateral Mastectomy with back-to-back reconstructive surgery as preventative measure. I tested negative for breast cancer gene. I did do strict Vegeterian diet for almost 60 days prior to my end of March surgery. Strongly recommend Chris Wark's book: Chris Beat Cancer. They also have cookbook: Beat Cancer Kitchen. He had Stage 3C Colon Cancer, did surgery but opted out of chemo and radically changed his eating and is still alive today. He has tons of info about studies that he cites for herbs/foods that are cancer preventive. I still eat this way about 90% of the time. For me, they only found 1 speck of invasive cancer so not doing radiation or hormone blocker, sentinel lymph node was negative so surgeon said there is no way it went anywhere else in my body. Research I read said that they are overtreating DCIS Cancer. Other research I have seen said that we need Estrogen to protect our bodies from disease. My Mom did Estrogen blocker but she had Stage 4 Breast Cancer and died last year, she lasted 4 years though so I think it helped keep her alive and with quality of life. I also had best friend with 2 forms of breast cancer, one that was very aggressive, she did surgery but did do Estrogen blocker for 5 years. I would encourage you to do lots of research for your situation. Hope your results come back negative!

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My Cancer is very similar... I had 1.9mm invasive cancer(too small to do onco test), also DCIS, I had lumpectomy on left breast and double reconstruction. I did radiation for 15 days. I started Anastrozole right after radiation and started having side effects in about 4-6 weeks. I stopped taking it. I am starting to feel better after about 10 days. BUT... while on anastrozole, I had Brain MRI due to headaches, got a breast infection in both breasts and now just found a cyst in left breast. I am having a MRI on breast in a couple weeks.

I am looking for good information on how to proceed. Doctor has suggested a different Hormone blocker-that was prior to cyst being found. I am currently reading Anti Cancer Living. I agree about healthy eating and exercising 100%

Can you share a link to your research on DCIS Cancer?

Thanks for sharing!

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@ckins105

Well said —— I was on a spiral for my DCIS stage 0 -thank god my husband was able to reroute my crazy thoughts - I decided to take the wait and see method -despite being offered AI Radiation and mastectomy. I am going in my first 6month mammo -anxiety is tough but I will take each review and process new information. I urge people to take the time and do the research-get second opinions.

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I was diagnosed with DCIS No invasive cancer low to medium grade DCIS In January couldn’t clear margins and went for another surgery to clear.
The surgeon didn’t clear margins. I had a second opinion after my first surgery and the surgeon said she would have never suggested surgery. My calcifications hadn’t changed in 5 years. She didn’t recommend any estrogen blockers. Mammograms will always pick up calcification which I have. She suggested ultrasound which will pick up invasive cancer. I changed my diet, vegetables, less meat, juicing , soy milk, exercise, green tea, and fasting.

The original surgeon won’t give me an ultrasound without a mammogram.
I prefer not to get a mammogram because I know the results calcification.

Going to get a Sonocine ultrasound which scans the whole breast not just one area. It will pick up 3 mm invasive cancer

Why treat DCIS like cancer it may never turn into cancer?

I have done a lot of research since my diagnosis and decided to wait before I have another surgery and take estrogen blockers

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@onahass

I was diagnosed with DCIS No invasive cancer low to medium grade DCIS In January couldn’t clear margins and went for another surgery to clear.
The surgeon didn’t clear margins. I had a second opinion after my first surgery and the surgeon said she would have never suggested surgery. My calcifications hadn’t changed in 5 years. She didn’t recommend any estrogen blockers. Mammograms will always pick up calcification which I have. She suggested ultrasound which will pick up invasive cancer. I changed my diet, vegetables, less meat, juicing , soy milk, exercise, green tea, and fasting.

The original surgeon won’t give me an ultrasound without a mammogram.
I prefer not to get a mammogram because I know the results calcification.

Going to get a Sonocine ultrasound which scans the whole breast not just one area. It will pick up 3 mm invasive cancer

Why treat DCIS like cancer it may never turn into cancer?

I have done a lot of research since my diagnosis and decided to wait before I have another surgery and take estrogen blockers

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Yes I am also waiting- got a nutrition referral-genetic testing-pending and that’s that - time to get on with it instead of mentally anguishing for the what if

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@onahass

I was diagnosed with DCIS No invasive cancer low to medium grade DCIS In January couldn’t clear margins and went for another surgery to clear.
The surgeon didn’t clear margins. I had a second opinion after my first surgery and the surgeon said she would have never suggested surgery. My calcifications hadn’t changed in 5 years. She didn’t recommend any estrogen blockers. Mammograms will always pick up calcification which I have. She suggested ultrasound which will pick up invasive cancer. I changed my diet, vegetables, less meat, juicing , soy milk, exercise, green tea, and fasting.

The original surgeon won’t give me an ultrasound without a mammogram.
I prefer not to get a mammogram because I know the results calcification.

Going to get a Sonocine ultrasound which scans the whole breast not just one area. It will pick up 3 mm invasive cancer

Why treat DCIS like cancer it may never turn into cancer?

I have done a lot of research since my diagnosis and decided to wait before I have another surgery and take estrogen blockers

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I understand your anguish. I have had my third surgery for DCIS. Intermediate grade. First two surgeries could not get a clear margin. Waiting 3 weeks for the path report on this last surgery. I am also very confused on the treatment of this. The first surgeon told me it will definitely turn into an invasive cancer. How does he know that? The surgeries were not bad and I did prefer removing it rather than working about it being there, but three surgeries!

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@cfetoday

I understand your anguish. I have had my third surgery for DCIS. Intermediate grade. First two surgeries could not get a clear margin. Waiting 3 weeks for the path report on this last surgery. I am also very confused on the treatment of this. The first surgeon told me it will definitely turn into an invasive cancer. How does he know that? The surgeries were not bad and I did prefer removing it rather than working about it being there, but three surgeries!

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I’m sorry you are going through this and ugh, I hear ya!
I will also be having my 3rd surgery coming up. My surgeon said I had clear margins and would not need to take anymore out and then I met with my Radiation and Medical Oncologist’s and they both agree my margins are way too close and do need more taken out before I can start Radiation.
I have had a couple complications from the other 2 surgeries and I am actually not too impressed with a few things my surgeon has done, so I have an appointment with a different one on Monday for a consultation. Hopefully it goes well and this is the last surgery!
I really hope you get your Path results soon. The waiting is the worst!
And praying you now have clear margins!

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@mchler73

I’m sorry you are going through this and ugh, I hear ya!
I will also be having my 3rd surgery coming up. My surgeon said I had clear margins and would not need to take anymore out and then I met with my Radiation and Medical Oncologist’s and they both agree my margins are way too close and do need more taken out before I can start Radiation.
I have had a couple complications from the other 2 surgeries and I am actually not too impressed with a few things my surgeon has done, so I have an appointment with a different one on Monday for a consultation. Hopefully it goes well and this is the last surgery!
I really hope you get your Path results soon. The waiting is the worst!
And praying you now have clear margins!

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I feel for you too. That seems kind of ridiculous that the surgeon would give you clear margin and then the others would not concur. Very frustrating. The only thing is knowing that your not alone with these conflicting diagnoses.

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@cfetoday

I feel for you too. That seems kind of ridiculous that the surgeon would give you clear margin and then the others would not concur. Very frustrating. The only thing is knowing that your not alone with these conflicting diagnoses.

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Yes I am also concerned about the conflicting opinions!
Possibly the surgeon I have been using just doesn’t have enough experience and that is why? She had a surgery opening last week, but I declined and decided on getting a second opinion.

The surgeon that I am meeting with tomorrow is the one I had initially wanted (he was on sabbatical when this all started so I couldn’t see him) and he has lots of experience and is supposed to be the best.
Fingers crossed I made the right decision!

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@mchler73

Yes I am also concerned about the conflicting opinions!
Possibly the surgeon I have been using just doesn’t have enough experience and that is why? She had a surgery opening last week, but I declined and decided on getting a second opinion.

The surgeon that I am meeting with tomorrow is the one I had initially wanted (he was on sabbatical when this all started so I couldn’t see him) and he has lots of experience and is supposed to be the best.
Fingers crossed I made the right decision!

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I think you did. After the first surgeon could not get it the 1st 2 times for me. I went with a more experienced surgeon. I pray this is it for me. Will research the radiation after I get a clear margin.

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@onahass

I was diagnosed with DCIS No invasive cancer low to medium grade DCIS In January couldn’t clear margins and went for another surgery to clear.
The surgeon didn’t clear margins. I had a second opinion after my first surgery and the surgeon said she would have never suggested surgery. My calcifications hadn’t changed in 5 years. She didn’t recommend any estrogen blockers. Mammograms will always pick up calcification which I have. She suggested ultrasound which will pick up invasive cancer. I changed my diet, vegetables, less meat, juicing , soy milk, exercise, green tea, and fasting.

The original surgeon won’t give me an ultrasound without a mammogram.
I prefer not to get a mammogram because I know the results calcification.

Going to get a Sonocine ultrasound which scans the whole breast not just one area. It will pick up 3 mm invasive cancer

Why treat DCIS like cancer it may never turn into cancer?

I have done a lot of research since my diagnosis and decided to wait before I have another surgery and take estrogen blockers

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According to the Mayo Clinic DCIS IS cancer. "Ductal carcinoma in situ (DCIS) is the presence of abnormal cells inside a milk duct in the breast.
DCIS is considered the earliest form of breast cancer. DCIS is noninvasive, meaning it hasn't spread out of the milk duct and has a low risk of becoming invasive." Source: https://www.mayoclinic.org/diseases-conditions/dcis/symptoms-causes/syc-20371889

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