Just diagnosed with DCIS: How do I know what questions to ask?

@foreverfaithful0925 and @sam44 |

Welcome to Connect, it is caring helpful support group. Most members in this group have been where you are, I call it the "What Now?" stage. I joined Mayo Connect in 2019 when I was in your position. Just diagnoses and trying to make sense of everything that was happening.

The beginning part of treatment is the scariest because there is so much unknown. Sounds like they have caught it early so there will be choices in treatment plan. It can become overwhelming. With GOOGLE we all going looking for info, I would wait till see provider and have more info. There is a balance between being informed and so much information your anxiety gets out of control.

I would let provider discuss what is next and then ask any questions you have.
Bring someone with you helps, there is so much information, another set of ears help.
Once you leave office, you will have more questions, ask who you should contact with follow up questions.

Initial questions I would ask before making any treatment decisions::
- Do I need an MRI (if you have not had one) or other additional testing. MRI will show more than mammogram, especially if have dense breast.
- Ask about genetic testing. Genetic testing for breast cancer looks for DNA changes that increase the risk of breast cancer. The results of genetic testing could influence your decision on type of treatment.

On cancer.org there is long list of questions you can pick from. If let provider explain everything first, they should cover many of these items.
https://www.cancer.org/cancer/types/breast-cancer/understanding-a-breast-cancer-diagnosis/questions-to-ask-your-doctor-about-breast-cancer.html

If not comfortable with what your provider is telling you, you can always seek a 2nd opinion before making any decisions.

When are your next appointments to discuss treatment? There is not much you can do between now and your next appointment, so enjoy the weekend if you can.

Hi! I know the feeling. I just got diagnosed this past December. Had my lumpectomy in February and now Almost done with my radiation treatments. After treatment, I will start taking tamoxifen. All my doctors have answered all my questions and concerns. Everything was explained extremely well to me. Best advice, ask any questions you may have. If you are not comfortable with a certain doctor, get a second opinion or just simply find a new doctor. Do NOT take your medical advice off the internet. Listen to your Brest surgeon and team of doctors they assign. Good luck :). You Will be ok! Trust me

That was what the RN that called me said - if I am to research online, only go to reputable sites.

I was able to get some sleep last night. Just need to take a deep breath and take it one at a time.

Thank you so much for your input!

Thank you Laurie. I will read the article you recommended. The next phone appointment I have is on the 31st with the Dr, then June 3rd with the surgeon.

I have 2 young kids, 12 and 7. I told my husband it would probably been easier for me if we don’t have kids. I have not told them yet, I am going to wait until I learn more within the next few appointments so that I can explain it better to them.

@foreverfaithful0925
I agree to not telling children yet. I kept my diagnosis private (only close friends and sister) till I had chemo and hair fell out. Very obvious then. I had Stage 2 estrogen positive cancer, it had spread to few lymph nodes.

My sister had stage 0 and her treatment was remove lump and then estrogen suppression drugs. She was in her 60s.

Every treatment plan is tailored to individual based on many factors; type cancer, age, medical / family history, pre or post menopausal, etc...

If possible, you may want to record your phone call so can re-listen to later.

@foreverfaithful0925 and @sam44 |

Welcome to Connect, it is caring helpful support group. Most members in this group have been where you are, I call it the "What Now?" stage. I joined Mayo Connect in 2019 when I was in your position. Just diagnoses and trying to make sense of everything that was happening.

The beginning part of treatment is the scariest because there is so much unknown. Sounds like they have caught it early so there will be choices in treatment plan. It can become overwhelming. With GOOGLE we all going looking for info, I would wait till see provider and have more info. There is a balance between being informed and so much information your anxiety gets out of control.

I would let provider discuss what is next and then ask any questions you have.
Bring someone with you helps, there is so much information, another set of ears help.
Once you leave office, you will have more questions, ask who you should contact with follow up questions.

Initial questions I would ask before making any treatment decisions::
- Do I need an MRI (if you have not had one) or other additional testing. MRI will show more than mammogram, especially if have dense breast.
- Ask about genetic testing. Genetic testing for breast cancer looks for DNA changes that increase the risk of breast cancer. The results of genetic testing could influence your decision on type of treatment.

On cancer.org there is long list of questions you can pick from. If let provider explain everything first, they should cover many of these items.
https://www.cancer.org/cancer/types/breast-cancer/understanding-a-breast-cancer-diagnosis/questions-to-ask-your-doctor-about-breast-cancer.html

If not comfortable with what your provider is telling you, you can always seek a 2nd opinion before making any decisions.

When are your next appointments to discuss treatment? There is not much you can do between now and your next appointment, so enjoy the weekend if you can.