Home

I was diagnosed with DCIS in the summer of 2007. After having a lumpectomy in December of that same year, I decided to forgo radiation and tamoxifen after consulting with Dr. Michael Lagios, a world renowned DCIS expert and pathologist.

Using the Van Nuys Prognostic Index developed by Dr. Mel Silverstein and himself, Dr. Lagios reviewed my pathology and concluded that my risk of recurrence was very low and that therefore radiation would be of very little benefit to me. This predictive tool calculates recurrence risk based on your age, the size and grade of your DCIS, and the size of your margins.

DCIS patients have many options and ultimately each person must decide what is best for them. Lumpectomy with radiation or mastectomy, followed by tamoxifen are the most common choices. However, some patients, especially those with low or intermediate grade DCIS may not need radiation or tamoxifen.

My journey in making these decisions was difficult. The choices I made are not necessarily appropriate for everyone. Hopefully this website will make it easier for other DCIS patients to make informed decisions about what treatments are right for them.

For more info re DCIS, please also check out our new website DCIS Redefined. It discusses choices unique to DCIS, plus provides other personal stories and integrative recurrence prevention strategies.

Advertisements

Responses

  1. Hi,
    I read your story with great interest. I am trying to decide on radiotherapy or mastectomy. I have dcis 11mm, stage 0 grade 3 and 2 -. Just wondering how you are doing as I am keen for information before deciding the route to take.
    Thank you,
    Lola

  2. Sandie I thank you for this website.So informative andd helpful.
    Barbi

  3. Hello sandie,
    I am very interested in your story. I have DCIS grade 2, solid and cribriform pattern , resection margin negative , ER and PR positive , HER2 negative. I don’t know if radiation and tamoxifen profit ? how to contact Dr. Lagios . Thank you !

    • Dear Jingchi,
      Dr. Lagios will use the Van Nuys Prognostic Index to calculate your risk of recurrence without radiation. This uses your age, the grade of your DCIS, the size of your DCIS and the size of your surgical margins to calculate your personal risk. Dr. Lagios does not think that tamoxifen is very effective in reducing risk.

      You can reach him by calling his office: 415-789-0965 or going to his website: http://www.breastcancerconsultdr.com/index.html

      His assistant Sheila will request your pathology slides and possibly your imaging from your hospital. Dr. Lagios then reviews it and sends YOU a report. You then have a 45 minute consult with him.

      You can also find more information re Dr. Lagios and DCIS on a new site that my friend and I just developed:
      http://dcisredefined.org/

      Please also feel free to email me at lovetennis60@aol.com if you have any questions.
      Wishing you all the best,
      Sandie

  4. Hi Sandie,
    Thank you for your blog and sharing your story. You inspired me to reach out to Dr. Lagios and am grateful to you for that.

    I had my consult with Dr. Lagios today and feel so much better and much less confused. I like how he lays everything out on the table, explaining all your options and then sharing his suggestion. The oncologist and radiologist I went to told me I had a 30% chance of recurrence. According to the Van Nuys Prognostic Index I have a 6.2% of recurrence without rads and a 2.5% with rads. He had a little concern over the lab not testing all of the specimen, so he is requesting they do that now. He also recommended me going for a mammo and MRI at Sloan-Kettering in 6 months. After I get the lab results I am going to sit down with my breast surgeon to get her input. She was the one that originally told me they probably would not recommend rads or Tamoxifen and that I would just have to be monitored closely for now. I know that there is no 100% guarantee and that I must live with the decision I make, but I am so grateful that I had the opportunity to have Dr. Lagios for a 2nd opinion.
    ww3354

    • Dear ww3354,
      I am so glad my blog was helpful to you. The 30% recurrence rate without radiation and tamoxifen that your oncologists mentioned sounds like an average of all DCIS patients. This includes those with high grade large lesions and small margins. The much lower 6.2% Dr. Lagios calculated for you is based on your own personal information and is therefore much more accurate for you.

      After 6 years, I still get a RODEO MRI every year, because it has only a 1% false negative rate and a 11% false positive rate.

      It is also important for peace of mind for each person to work on recurrence prevention by developing her own integrative approach of eating cancer fighting foods, exercising, taking cancer prevention supplements and/or bio-identical hormone balancing.

      Please check our new website:http://dcisredefined.org/ for more info and ideas.
      Hugs,
      Sandie

  5. Hi Sandie,

    Just wanted to check in and give you an update. I am definitely not doing the rads and Tamoxifen. I met with my GP yesterday and I thought he was going to be upset with my decision, but instead he said he was very impressed with me and felt very positive about Dr. Lagois. I made an appointment to see a nutritionist on Monday, that worked at the Block Cancer Center for Integrative Medicine. I feel I can at least be proactive in trying to avoid an recurrence or any other cancer by improving my diet, etc.

    I hope all is well with you and your journey.

    My best,
    ww3354

    • Dear WW3354,
      Congratulations! You are awesome in advocating so strongly for yourself. This website, which was recommended to me last night by a nutritionist from our local cancer center, would be another good source for cancer prevention ideas: http://www.aicr.org/.
      The book, Anti-Cancer is another good resource for suggestions.
      Wishing you all the best in your quest for good health.
      Sandie


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s