Recent DCIS Diagnosis

Was diagnosed with stage 0 high grade on my left side. Had a lumpectomy 6 weeks ago with clean margins. Radiation has been recommended to prevent a recurrence. I am very concerned about radiation to my heart as I am in my 60s and have a family history of heart disease. I heard about a newer form of radiation, Proton therapy, that controls depth and stray beams to better protect the heart and adjacent areas. Has anybody had or investigated Proton radiation?

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  • Right now this type of radiation treatment is still too new to confirm all the data that has come in about it, but it looks very promising from what the clinical trials at UCLA have deduces. The following excerpt is from Penn University Medical:

    Unlike conventional radiation that can affect surrounding healthy tissue as it enters the body and targets the tumor, proton therapy's precise, high dose of radiation is extremely targeted. This targeted precision causes less damage to healthy, surrounding tissue.

    When aimed at cancer tumors, protons pack impressive power. Protons release their energy completely once they enter a tumor, limiting the radiation dose beyond the tumor, causing less damage to the healthy surrounding tissues and resulting in fewer side effects.

    Even if you've already had a course of conventional radiation and are unable to receive more, you may still be able to receive proton therapy.

    More facts about proton therapy:

    Proton therapy offers fewer reported side effects and complications

    Normal, healthy, surrounding tissues receive 50% to 70% less radiation

    Proton therapy offers an increased safe dose delivered to tumors

    Cure rates may be increased with proton therapy

    Proton therapy can re–treat tumors after recurrences

    Thanks to its marvelous precision, proton therapy is perhaps the most advanced treatment for cancer tumors located close to critical organs and highly sensitive areas, such as the spinal cord, heart and brain.

    Best of luck

  • Good info

  • Hi haagr! I'm tagging a few people on here who have mentioned they were diagnosed with DCIS, in case they want to chime in: stayblessed LeslieVa ValerieVictorious WBaca1 Be-well

  • Thank you

  • I cannot offer any insight on this; did not undergo any type of radiation whatsoever,

  • Were you low grade? Radiation is not recommended for low grade and sometimes not for intermediate grade. I have high grade which is supposed to be more likely to recur.

  • This is a follow up from my previous post. I went to Sloan Kettering today for an RT consult with the doc who is in charge of their proton therapy referrals. I liked him. Very different opinion from NYU. Said do not do prone. Thinks he can almost fully protect my heart without proton therapy. Because of the location of the lesion he can get better access if I'm supine (on my back) and still can protect my heart with breath holding. Said new studies show that prone is not as effective in heart protection as supine with breath holding. I guess I'll be doing some more research this weekend.

    But for now I'm much more at ease and for the first time since being diagnosed I truly believe that I will be alright!

  • This is another follow up on my previous posts. I went for my third radiation therapy consult. Three consults, 3 opinions. Two recommend the prone position. One will complete therapy in 3 weeks by adding the boost daily. One will complete therapy in 4 weeks with the boost being done during the fourth week. The third recommendation is to use breath holding in the supine position (on my back) over 4 weeks. Again the boost would be in week 4.

    Breath holding seems to be an up and coming technique to minimize radiation to the heart. There is little information on this. Has anyone had it or can refer me to a source on its efficacy?

    To confuse me more, my DCIS Oncotype came back today as 40, a low intermediate with a 17% risk of a recurrent (DCIS or invasive) at 10 years and an 8% risk of a local invasive recurrence.

    Still have a problem understanding how/why stage 0 DCIS is treated as if it were invasive. My surgeon and oncologist but tell me I'm cancer free. It just doesn't seem right to take healthy breast tissue and make it unhealthy Can't wrap my head around this. Has anyone with high grade DCIS refused radiation?

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