Anyone choosing no radiation after lumpectomy?

hopedreams

HI AGAIN.. DO U GO FOR YOUR YEARLY MAMMOS & ULTRASOUND..ITS VERY IMPORTANT THAT U DO..!! ALSO I HOPE U CAN FIND A CANCER CENTER TO GO TO.. THEY WOULD KNOW MORE ON HOW TO HELP U.. I HAD LUMPECTOMY 2 YRS AGO..ABOUT..& NO ONE MENTIONED RADIATION TO ME.. IT WAS FOR SOME KIND OF PRE CANCER CELLS.. I FORGOT WHAT THEY CALLED IT..? DUH.. GETTING OLD IS NO FUN.. TAKE CARE OF U ~HOPE

cowgirl13

Hope, its very difficult to read your post because it is in all caps and bolded. I would like to read your post but its too difficult. Same with another post you posted on another thread. Please don't be offended.

yogamom2

I also chose no radiation or HT. for similar reasons concerning risk factors from tx and very low recurrence risk. 1 year out....Mammo & U/S both clean! Follow up w/ breast surgeon went well, will see yearly from now on. She did say protocol now suggests genetic testing for all BC including DCIS as they have identified multiple genes that increase risk. Not genomic testing like Oncotype. Anyone else have this recommendation? Did you have the testing done? Results? tx options? Thanks!

marinochka

Hello, very interested in this topic. I have DCIS grade 2. Will have though re incision to have margins 2mm on all sides. because i had a lumpectomy on 1/19 and result was that on 1 side 0.5 mm from main DCIS area there was also DCIS which was removed during lumpectomy but it made this margin on one side 1.5mm

I insistent on re incision basically. Doctor was ok with leave it like that.

But he said if tissue which we now remove will be all clean i might not need radiation. It is right breast, not close to heart. I want to know if i really can skip it, or it would be not a good idea....

thank you

beesie.is.out-of-office

marinochka, usually a 10mm (1cm) margin on all sides is the guideline for when it's possible to consider passing on radiation, which is not to say that some people haven't passed on rads with smaller margins.

You should ask about the Oncotype DCIS test: https://www.oncotypeiq.com/en-US/breast-cancer/pat...

There is another similar test that is less frequently used, but I can't remember the name... I will add it into this post if it comes to mind.

You can also look at the guidelines from the Van Nuys Prognostic Index:

https://academic.oup.com/jncimono/article/2010/41/...

https://breast-cancer.ca/vauys-npi/

marinochka

thank you Beesie, definitely will ask about Oncotype DCIS test.

God, why he even said that if 10 mm margin is guideline.

marinochka

i am also confused with this table...how to understand that?

thank you

marinochka

well, here some article :

https://www.ajmc.com/newsroom/small-benefit-seen-in-adding-radiation-to-dcis-plan-for-breast-cancer

beesie.is.out-of-office

marinochka, the key sentence in the study you provided is this one:

"An accompanying commentary said the results support omitting radiotherapy after lumpectomy in low-risk patients".

The question is, what is a low risk patient? The Oncotype DX and the VNPI are two ways to help determine who can be considered low risk.

The Oncotype test assesses the genetic make-up of the DCIS. The VNPI looks at basic pathology factors, plus age. It's simple. Give yourself a score of 1,2, or 3 for each of the four factors (size, margin, class and age) using Table 1 at the top. Add up the scores to get a total and see the treatment recommendation in Table 2 at the bottom.

marinochka

Beesie, yes, when you explained, it is easy, thank you!

And yes, I will ask doctor about oncotype test.

thank you so much for all your help, you are a treasure!

marinochka

I am reading here a lot about oncotype tests for DCIS.

This is what I got as an answer from my doctor office(one of the best cancer institution in the country, not that i am bragging, but just trying to explain how valid their protocol is) :

"Here we do not use oncotype for DCIS, instead we use the nomogram which a more accurate for your diagnosis and your overall care. "

Also i had a re incision today, and doctor came in to greet me before that , just for a minute, and he said: I will talk to you on our post op appointment, but oncotype test would not show anything, you don't need it. I hope he explains why later on.

beesie.is.out-of-office

Well, yuk to that. I've never been particularly impressed with the MSK DCIS Nomogram.

http://nomograms.mskcc.org/Breast/DuctalCarcinomaInSituRecurrencePage.aspx

I find that it is too generalized and doesn't consider some factors that are critical to recurrence risk.

1. It doesn't account for the size or focality of the DCIS. Recurrence risk is higher for those who have larger areas of DCIS or if the DCIS is found in more than one location of the breast.
2. It groups grade 2 and grade 3 together. That's unusual, to say the least.
3. It has only two options for margins, either negative (2mm or greater) or close/positive. But negative at 2mm versus negative at 10mm is very different, presenting very different risk profiles. And close at 1.9mm is completely different than positive, and again presents very different risks.
4. It increases recurrence risk based on the number of excisions. Why is an extra excision necessarily bad if the final excision results in very large margins all around? Or what if the final excision comes back completely clear of DCIS?

.

marinochka, the problem for you is that your DCIS was so small that I believe it is too small for the Oncotype DCIS test, even if your facility used this test, which it appears that they don't.

In the past many people from this site have contacted Dr. Lagios in San Francisco (one of the doctors who developed the VNPI) for a second opinion, but according to his website, he no longer accepts new patients.

I suppose you can have the nomogram done and you can speak to the Radiologist. And you can choose to get a second opinion at a different facility.

As an FYI, here are the NCCN Guidelines that talk to this issue. These are the gold standard treatment guidelines. Based on the NCCN definition, assuming nothing surprising shows up from your re-excision surgery (fingers crossed) and that you now have 3mm+ margins, I think you would clearly fall into the "low risk" category.

marinochka

thank you Beesie

it was also written that it would be also decided on "follow-up with a radiation oncologist and to proceed with that doctor's recommendations. " So we will see what recommendations would be and i also will ask questions on post op appointment with surgeon.

khakitag

yogamom2: I just got my results from excisional biopsy today. DCIS intermediate grade. Meeting with oncologist tomorrow. I did the genetic testing at my preop appointment and mine came back negative. That makes me feel better about not wanting rads. Got clear margins with excisional biopsy, so no need for lumpectomy. Still waiting for my hormone receptor status, but being premenopausal I’m already thinking NO tothe Tamoxifen.

L-O-R-I

Happy for you, Khakitag! Very good results!! If you decide not to do Tamoxifen, as I did, read up on how to balance your hormones naturally. Also, look up about artificial estrogen, and how it is found in almost everything. There are ways to avoid it and also ways to cleanse excess from your body through your liver. It's interesting how we can have a hand in increasing our chances of no recurrence.

khakitag

L-O-R-I:

• My mom survived stage 4 BC at age 40. She’s been in remission for over 30 years now. She completely changed her diet and has been almost militant about it. I feel like I do pretty good. Lift weights and do cardio almost daily, eat salads and limit sugar, but I draw the line at veganism. Just.Can’t.do.it!! I suppose if my life were in jeopardy like hers was, I could. I can do things like limit exposure to plastics, avoid soy, etc. it just needs to become more intentional now that my chance of recurrence is approaching 20% without meds or rad

L-O-R-I

Khakitag, That's great about your mother. It must be helpful to be able to have less fear, knowing that what she did really helped her! I agree with veganism being only as a last resort, at least for me. I found a farmer that raises calves on all organic with no grains, so I bought 1/4 cow and have enough meat to last until next fall! I even got the liver, as I believe it is amazing for one's health. They also gave me about 30 lbs of bones so that I can make bone broth. It makes great soups and is supposed to be really good for healing. It made for a happy puppy too!!

paknc

I had my first appointments this week with surgeon, MO and tomorrow radiation oncologist. Wondering if anyone opted for lumpectomy plus tamoxifen only?

My issue is that I'm lean with small breasts. BS promoted lumpectomy but noted it will be challenging to keep my breast size with plastic surgeon moving fat around because I have no fat! Meanwhile, MO told me he thought my DCIS was a result of the HRT I've been on, so now that I've stopped HRT, risk goes down basically. Originally I was leaning against endocrine therapy but now I'm willing to try it and skip the radiation potentially because I'm concerned that I won't have much breast left after lumpectomy and rads, andwon't be able to have decent plastic surgery - BS said normally no implants after lumpectomy and rads. My breasts are so lean, basically 1/3 of the left side is hardened from the biopsy scar, and I can feel the marker - I didn't know what the bump was but apparently that's what it is. Meanwhile, to complicate matters, they are doing two more biopsies - right breast biopsy and another spot on the left for calcifications - I'm now at a cancer center whereas I had the initial biopsy elsewhere.

MO was willing to put me in the COMET active monitoring trial with tamoxifen but surgeon said I need to wait for the additional biopsy results. If more DCIS, I would definitely want surgery plus something. My calcifications are 2mm and less, per my current understanding.