DCIS/Radiation Treatment

DCIS
I was diagnosed with DCIS grade 1. I had radiation, but no chemotherapy because tumor was small and caught very early. Medical oncologist originally said that he would "watch me"and do blood tests every 3 mos. Now he's thinking I may need Herceptin for the cext year beacause tumor was HR and PR- and HER+

Good luck --I know it's hard, but try not to 2nd guess your decisions
HUGS!!!

DCIS/Radiation Treatment
Magna,
For most DCIS patients, standard of care is mastectomy or lumpectomy with radiation. However, for low or intermediate grade DCIS, sometimes radiation and tamoxifen can be omitted. The Van Nuys Prognostic Index is a good tool to determine if you might be a good candidate.

When I was diagnosed with DCIS in 2007,I had a lumpectomy but chose to omit both radiation and tamoxifen, after consulting with Dr. Michael Lagios, a world renowned DCIS expert and pathologist with a consulting service that anyone can use. He used the VNPI and calculated my risk of recurrence at only 4 percent. With such a low risk, the 50 percent risk reduction that radiation typically provides was not worth it to me.

Another factor in my decision was the fact that radiation can only be done once. Since DCIS is non-invasive, I wanted to save it if I ever had a recurrence of invasive cancer.

Current studies on tamoxifen, for DCIS patients with negative margins, also showed at best a two percent risk reduction, so I opted out of taking that also.

Please carefully consider all your options. Once you know your own personal risk of recurrence with and without radiation, it will help you choose what is right for you.

Please feel free to send me a private message if you would like more info or check out my website at: https://sites.google.com/site/dciswithoutrads/home

Best,
Sandie

swalters said:

DCIS/Radiation Treatment
Magna,
For most DCIS patients, standard of care is mastectomy or lumpectomy with radiation. However, for low or intermediate grade DCIS, sometimes radiation and tamoxifen can be omitted. The Van Nuys Prognostic Index is a good tool to determine if you might be a good candidate.

When I was diagnosed with DCIS in 2007,I had a lumpectomy but chose to omit both radiation and tamoxifen, after consulting with Dr. Michael Lagios, a world renowned DCIS expert and pathologist with a consulting service that anyone can use. He used the VNPI and calculated my risk of recurrence at only 4 percent. With such a low risk, the 50 percent risk reduction that radiation typically provides was not worth it to me.

Another factor in my decision was the fact that radiation can only be done once. Since DCIS is non-invasive, I wanted to save it if I ever had a recurrence of invasive cancer.

Current studies on tamoxifen, for DCIS patients with negative margins, also showed at best a two percent risk reduction, so I opted out of taking that also.

Please carefully consider all your options. Once you know your own personal risk of recurrence with and without radiation, it will help you choose what is right for you.

Please feel free to send me a private message if you would like more info or check out my website at: https://sites.google.com/site/dciswithoutrads/home

Best,
Sandie

DCIS/Radiation Treatment
Sandie,

Thanks so much for the information you posted, especially about Dr. Michael Lagios. I will be contacting him in a few days to begin the process for a second opinion. I was diagnosed with DCIS in March 2011. The pathology report from my biopsy was low grade DCIS, cribiform with some necrosis, ER+ and PR+. I had a lumpectomy on 4/1/2011...the path report from the surgery came back with 2mm (yes MM) of high grade DCIS with comedo necrosis, ER+ and PR+. I asked my soon to be daughter-in-law, a pathology resident, how it would be possible that I could get two (seemingly) radically different results. She explained to me in easy to understand terms how it was possible but also said that pathology is sometimes very subjective and the difference could have been because there were different pathologists reading the results. This made me very uneasy, especially after I visited my surgeon for my follow up appointment. Her initial reaction to me was that, based upon the pathology report showing only a 2mm area of high grade DCIS, I might not need radiation but maybe just take Tamoxifen and do aggressively close follow up with mammography and clinical exams for the next 3-5 years. I pretty well made it clear to her that I did not want to receive radiation treatments or Tamoxifen, given the potential and very real side effects of both and to keep the radiation option open in case cancer did recur in the same breast. She then began to hem and haw and stated that she would present the case to the breast tumor board to get their opinion/recommendation, even though the area was only 2mm. I received the call from her regarding the tumor board recommendation, and of course they are recommending "Standard of Care", i.e. radiation with Tamoxifen. Now I feel like they want to overtreat me just to be on the safe side. I am set up to see a medical oncologist tomorrow and will soon see a radiation oncologist, but I am still of the mind that I will not begin any other treatment until I receive a second opinion on my pathology slides.

I think I am exactly what is stated above
but I DID DO 8 wks radiation and was on Tamoxifen until last month. (started it Aug 2008)

side effects so another month no med/ more blood work and another internal ultrasound (maybe another D & C) then the dr will decided what to give me!

Denise

no family history..

robang13 said:

the same
I also have DCIS, low grade, stage 0, clear margins but I was told my the radiological oncologist that this form of cancer can come back as an aggressive cancer and that rads cuts that chance by a certain percent. He also stated that it also cuts the chances of it showing up in the other breast. That's what made me decide to go with the radiation. I too will be going on tamoxifen when done .

I wondered
I wondered about WHY NOT at LEAST Radiation but my doctor said it was so small(1/2 cm) and non invasive.This DCIS will not spread to the other breast BUT I can get other cancers.Meaning a different type of breast cancer or any other type of cancer in other organs. I don't get the margin test every year like my friends who were dx with invasive cancer.I thought about getting it anyway (oncologist said if I wanted it) but reading here there is alot of controversy with the margin test.Lots of false alarms. Then I asked my breast surgeon about the margin test.He thought it wasn't a good idea to get it.Alot of worry.So I guess he meant false alarms like I read here.

It is to late for radiation but I will keep taking my tamoxifin(try to remember at times) and go for another pill after tamox for the next 5 years.Like I've read here sometimes the doctors don't give radiation the first time(for non invasive) so it can be given later if a invasive cancer develops.I am OK with that.

Lynn Smith

swalters said:

DCIS/Radiation Treatment
Magna,
For most DCIS patients, standard of care is mastectomy or lumpectomy with radiation. However, for low or intermediate grade DCIS, sometimes radiation and tamoxifen can be omitted. The Van Nuys Prognostic Index is a good tool to determine if you might be a good candidate.

When I was diagnosed with DCIS in 2007,I had a lumpectomy but chose to omit both radiation and tamoxifen, after consulting with Dr. Michael Lagios, a world renowned DCIS expert and pathologist with a consulting service that anyone can use. He used the VNPI and calculated my risk of recurrence at only 4 percent. With such a low risk, the 50 percent risk reduction that radiation typically provides was not worth it to me.

Another factor in my decision was the fact that radiation can only be done once. Since DCIS is non-invasive, I wanted to save it if I ever had a recurrence of invasive cancer.

Current studies on tamoxifen, for DCIS patients with negative margins, also showed at best a two percent risk reduction, so I opted out of taking that also.

Please carefully consider all your options. Once you know your own personal risk of recurrence with and without radiation, it will help you choose what is right for you.

Please feel free to send me a private message if you would like more info or check out my website at: https://sites.google.com/site/dciswithoutrads/home

Best,
Sandie

DCIS/Radiation Treatment
Jmmmom,
The cool thing about consulting with Dr. Lagios is that he sends YOU the official pathology review report and then you get to talk to him directly and ask any question you want for 45 minutes. He is very kind and easy to talk to.

If you are willing, I wouldn't mind hearing what he says and how this all works out for you. I have learned so much from other DCIS sisters.

Please also feel free to email me anytime at lovetennis60@aol.com

You are very wise in asking him for a 2nd opinion before you do anything else.

Hugs,
Sandie