Just finished DCIS Stage 0 surgery, any advice on Radiation and tamoxifen for prevention

rssh447

 I just had a DCIS (stage zero) surgery. I am ER+.

I needed some guidance related to next step of treatment/prevention. Any advice on how long after after DCIS surgery should I receive Radiation, after 2 or 3 months? Is it better to delay the radiation to allow the incision to heal completely? What side affects to expect during and after radiation?

Most likely, I will be put on Tamoxifen for 5 years, really scared about side affects.

I am 43, and had hysterectomy done at 40. 

Any advice or tip. Thank you so much.

catlady2

They usually recommend that you start radiation 6-12 weeks after a lumpectomy. The studies have shown that waiting longer may affect the risk or recurrence. The radiation treatment itself was not hard to get through. Going everyday was challenging . My biggest side effect was a bad skin rash and redness. Follow their advice for using creams, etc during treatment. It turns out I had an allergic reaction to the calendula cream they had suggested! I should have spoken up about the rash earlier! It took close to a month after the end of treatments for my skin to be "normal" again. The doctor had me use a course of oral steroids to finally clear up my skin. You will be more tired than normal, so do't push it. If you feel tired rest! Consider yourself lucky that you were diagnosed with DCIS!

There are some wonderful posts on this site concerning DCIS. Use the magnifying glass at the top of the page to search for DCIS. I think you will find it helpful. Look for the most recent posts, lost has changed in the last 5 years.

Take care and hang in there. It does get better.

rssh447

https://csn.cancer.org/discussion/comment/1700946#Comment_1700946

Thank you so much for your reply. I saw Radiation oncologist yesterday and was told that I have a 10% chance of recurrence If I do radiation plus take tamoxifen. Alternatively if I only take tamoxifen then my chance of occurrence is 20%.

I am not clear if this a recurrence risk for all DCIS cases or is this specific to me. Were you informed about the chance of recurrence? Please advise. Thank you.

catlady2

What is your risk percentage if you only do radiation?

My DCIS was ER and PR negative so meds were not an option for me. I did do radiation. My risk of lifetime recurrence is 15%. A woman's chance of developing breast cancer is 12% so my risk is only slightly higher. Not all DCIS will turn into an invasive breast cancer. I always considered a Stage 0 diagnosis to be a warning shot from my body to do better to protect my health.

There are lots of resources out there to learn more:

The American Cancer Society just updated their guidelines for Diet and Exercise for Cancer prevention that may also decrease chance of recurrence. I know that in some cases nothing can prevent recurrence, but I figure every little bit that I can do may be helpful in the journey.

Changes to the guideline include recommendations for getting more physical activity, eating less (or no) processed and red meat, and avoiding alcohol or drinking less. It says:

• Get to and stay at a healthy body weight throughout life. If you’re overweight or obese, losing even a few pounds can lower your risk for some types of cancer.
• Adults should get 150-300 minutes of moderate-intensity physical activity per week, or 75-150 minutes of vigorous-intensity physical activity, or a combination. Getting 300 minutes or even more will give you the most health benefits.
• Children and teens should get at least 1 hour of moderate or vigorous intensity activity each day.
• Spend less time sitting or lying down. This includes time looking at your phone, tablet, computer, or TV.
• Eat a colorful variety of vegetables and fruits, and plenty of whole grains and brown rice.
• Avoid or limit eating red meats such as beef, pork, and lamb and processed meats such as bacon, sausage, deli meats, and hot dogs.
• Avoid or limit sugar-sweetened beverages, highly processed foods, and refined grain products.
• It is best not to drink alcohol. But if you do, women should have no more than 1 drink per day and men should have no more than 2. A drink is 12 ounces of regular beer, 5 ounces of wine, or 1.5 ounces of 80-proof distilled spirits.

Have you used these tools? https://nomograms.mskcc.org/breast/DuctalCarcinomaInSituRecurrencePage.aspx

https://dcisredefined.org/dilemmas/assessing-risk/van-nuys-prognostic-index/

Listen to your doctor but ask lots of questions. This is your life ! I am three years out and NED. In my case my oncologist feels I will never have to go through this again. I am hoping she is correct!

rssh447

https://csn.cancer.org/discussion/comment/1700969#Comment_1700969

Thank you so much for your detailed reply. They didnt give me a recurrence chance on only radiation. i certainly need to ask that question and more questions from the doctors. Thank you again!

Be_happy

Hello Dear, My DCIS was ER and PR positive. Surgery done in August. I am taking Tamoxifen, just felt dry mouth in first week then doing well. I took decision on no radiation because of non invasive DCIS(Still I don't know correct decision or not). I am following physical activity and diet. Thank you!

rssh447

https://csn.cancer.org/discussion/comment/1701089#Comment_1701089

Thank you for your reply.

exodus

Hello, My DCIS was ER+ and PR+. Invasive ductal carcinoma. I had a lumpectomy. My radiologist was a wonderful doctor, he told me if I was his mom he definitely would recommend radiation. I experienced fatigue after the radiation for only 2 weeks. I insisted on the Oncotype DX test to see if Tamoxifen would benefit me. My score (1-100) was 16. Relatively low. I have been taking tamoxifen for 7 years to cover any more cancer recurrence. I was told by my new oncologist to stop taking it, with no weaning off necessary. I have had hot flashes and brain fog. I will now try weaning off of the Tamoxifen and see what happens. I was very frightened to start Tamoxifen, but at least there are positive stats proving it helps with recurrence. It was worth it! Keep asking your Dr's questions and do your own research. God bless you!

manja

I was IDC, stage 1, ER+, PR+, HER2 negative. I had a lumpectomy and 16 RTs and did not experience any fatigue during treatment. I used Calendula cream and EMU oil. Both helped me with the fast recovery of my skin. I am on Tamoxifen and have hot flashes, but nothing else. Be brave... I think most people don't have terrible side effects.