Topic: DCIS, No Rads

I had DCIS grade 2 with necrosis. I would have "elected" (breast conserving surgery and rads is the standard of care for most DCIS) to not do radiation at all but for Mammosite radiation. I did that--more targeted, involves the tissue around the tumor cavity where most recurrences happen, does allow for another round of radiation, fewer "down the road" issues with heart/lungs, and less damage to the breast. Mel Silverstein has called Mammosite a treatment that might end the debate on whether radiation is overkill for DCIS.

I was diagnosed with both IDC and DCIS in 2/2004 just a few days after I turned 49. It was 40% DCIS grade I and 60% IDC grade I in a single tumor that measured 0.9 cm. No neurovascular invasion, no necrosis, Ki-67 5%, Her2 negative, ER and PR positive. I was already in menopause about 9 months at the time of diagnosis. I refused radiation after lumpectomy and also refused hormonal therapy. Just recently had my yearly mammogram and still clear at 4 years out. 

I'm sure that was the biggest reason for my getting radiation treatments.  My surgeon got clean margins first go, but one was VERY narrow -- 0.1 mm.  Also the tumor was biggish -- 4 cms.  So the rads . . . .  Five years plus later and I am fine.

Mary D.

I had a very small amount of calcification. The doctor says it's the 2nd smallest cancer she had ever dealt with.  Clean margins and the doctors still strongly suggested radiation so I did it 6 weeks after my lumpectomy. Maybe because it was estrogen receptor positive and projesteone receptor positive. I don't know for sure and am surprised to see these posts by women who had the option of not having radiation.

Aside from the lethargy, and the sunburned breast, I did ok. I worked from home during that time. I also do the tamoxifen, which caused migraines and eventually stopped my period. I am 51 so I don't consider that a bad thing.

Viv, what is SNB?

Viv, I am still learning the lingo. No I didn't have a SNB. I was glad at the time, now I wonder...

larousse,

Whenever nodes need to be checked but it's suspected that there is no node involvement, an SNB is the preferred way to check the nodes. With an SNB, fewer nodes are removed, reducing the risk of lymphedema (a nasty, life-long risk from node removal).  But SNBs can only be done if you have a breast in place because injections need to be made into the breast in order to identify which node is the 'sentinel' node.  So once you have a mastectomy, you lose the opportunity to have an SNB. 

With pure DCIS, checking the nodes isn't necessary because there is no invasive cancer, and therefore, no way that any cancer cells could have travelled to the nodes. The only reason why SNBs are done on DCIS patients is if there is concern that a microinvasion might be found when the final surgery is done.  This is why many women who have a mastectomy for high grade DCIS have an SNB done at the same time.   With high grade DCIS, the risk of microinvasion is greatest, and because these women are having a mastectomy, they won't be able to have an SNB later, should a microinvasion be found. For women who have a lumpectomy for DCIS, there is always the opportunity to have an SNB later if a microinvasion turns up.  That's why, to Luvmy2girl's point, having an SNB when you have a lumpectomy for DCIS is not the usual practice.  With the potentially nasty side effects, and the extra attention that you have to pay to your SNB arm for the rest of your life (in order to avoid lymphedema), most docs don't perform SNBs if they aren't necessary.  

You know it's interesting, the University down here made really good suggestions - including the MRI even with a BRCA1/2 negative, had I not had that they (medical community) would have never found the DCIS.  That University also recommended and my surgeon did an SNB on the side where the DCIS was.  It was also suggested by the University, one of their main bc docs there, that I have an SNB on BOTH sides - when I asked the question of where they would inject the dye since there was no lesion she didn't answer just said she would do one on each side??  It sounded completely wrong when you think of how they find the SN but again this was the same facility that recommended everything else that was important and beneficial.  However, I did not ask my bs to do a SNB on the breast without DCIS (I just couldn't make any sense out of it at all!) and luckly that breast was free of any lesions, just clean healthy breast tissue..  but I still find that running through my head and asking myself  "what where they thinking even to suggest a SNB on a clean breast!

I will say that I was relieved that the SNB came back clean!  Doesn't guarantee anything but it sure help relax me!  That and the morphine !

Best

Marian,

I had an excisional biopsy prior to my mastectomy so the main area with DCIS calcifications was already removed before I had my SNB.  The way that they did my SNB was by doing 4 injections around my nipple.  Ouch! (And Ouch! Ouch! and Ouch!).  I then lay on the table under whatever that thing was that allows them to view the dye as it travels through the breast.  It was fascinating, actually, since I was able to see the computer screen that showed the image, and I could actually watch as the dye from all 4 injections moved through my breast, converged together and all headed to the same lymph node. 

I agree though that having an SNB when you're having a prophylactic mastectomy probably isn't necessary, unless maybe you have have LCIS, ADH or if an MRI showed abnormalities that could be cancer.  But if there is little expectation that cancer will be found, an SNB shouldn't be necessary - the risks probably outweigh the benefits.  

PS  my breast was NOT blue afterwards and everything I read said it would turn blue for a few days/weeks...

Marian,

I'd been wondering about that myself, so I decided to see if I could find out what the machine is that tracks the movement of the dye.  The following NCI article does a good job of describing the SNB process, but they simply call the machine a "scanner".  I clicked on "scanner" to get the definition, the pop-up box says "In medicine, an instrument that takes pictures of the inside of the body."  Well that's helpful (Not!).

http://www.nci.nih.gov/cancertopics/factsheet/Therapy/sentinel-node-biopsy

I had a bit better luck with the next website.  In their preliminary description of the process, WebMD say that "Your doctor can see the dye or tracer with a special device."  Why, that's as helpful as calling it a "scanner".  But further on in their article, it says "a special camera (lymphoscintigraphy) takes pictures of the lymph nodes". http://www.webmd.com/breast-cancer/sentinel-lymph-node-biopsy

The Imaginis website does a little further with their description: "Sometimes, nuclear medicine images (also known as lymphoscintigraphy) of the lymphatic system will be obtained after injecting the technetium-99 before surgery."  http://www.imaginis.com/breasthealth/sentinelnode.asp

Finally, on the MDAnderson site, they call it a "gamma camera".  "During lymphoscintigraphy, the tracer is injected around the tumor or biopsy site, and a gamma camera captures its final destination. "  http://www2.mdanderson.org/depts/oncolog/articles/03/9-sep/9-03-1.html

That's the best that I can come up with. 

Since I had my mastectomy right after the injection, I didn't have to think about having a blue breast.  But I have to say that I was a bit taken aback when, groggy from surgery and on morphine, I dragged myself to the bathroom and what came out was blue!  I hadn't been warned. 

I'm certain I didn't get any blue dye when I had my SNB. I watched the injections and there definately wasn't any blue color to them. I think whether or not blue dye is used depends on the procedural

preference where the SNB is being done. Some places do both the blue dye and the isotope, others just do one or the other. I could be mistaken, but I'm pretty sure the blue dye doesn't contain anything radioactive. It's simply used to help the surgeon visually locate the sentinel node.  In contrast, when the isotope is used, the surgeon can't actually see the sentinel node...he/she locates it by using a geiger counter.

eibbed, do you know what grade is the dcis, also, did they give you a score on the Van Nuys scale

I am sure the Beesie, will come up with some good numbers that may help.

Best

I am geting rad because I have comedo necrois.  MY problem is the rad Onc said that it probably is all gone with the surgery I had.  About 1 cm clear margins.  The Rad scares me

Boy, this is a tough one. I struggled so much with this desicion after my last surgery. My surgeon was pushing for rads. I met the rad oc and she was great, plus really listened to my concerns and is somewhat holistic minded. She sealed the deal for me in the end.

lollybeth, you  said it, everyone has such an individual kind of dx, it's hard to compare. I had a really rare kind of breast cancer, a phyllodes sarcoma tumor (my second because my first surgeon 7 years ago in a small town did not know enough to take clear margins) that was big 7cm and the DCIS was the toy surprise inside, a mass of 1.5cm. Only 30 documented cases of this, ever. The large breast cancer team at my hospital (which is a med school) has 100 years of combined experience just in the surgeons and none of them had ever seen it. The DCIS did not show up on any screening they did before surgery...so the fear was, if I have the type that doesn't show on screens, then that breast could have more somewhere. Even though they got clear margins with the second surgery. My Doc said that my right breast seems to want to grow freaky cancers and  she didn't want to take a chance.

It took alot for me to agree to radiation and it was really *&#$$ hard to go through. Not to be entered lightly, I agree. I saw a Chinese medicine doc who specializes in cancer and his herbs/acupuncture complimented the radiation. My rad oc was good with that.

Even with ER and PR + at 80%, I have decided not to take tamoxifen, the research on that does not convince me and I am going to use alternatives to regulating my hormones. The side effects are more than I can accept. My doc is not pushing it and I am seeing a naturpath to guide me on the alternatives who is also specializing in breast cancer. Lucky me to live in an area with so many healing choices.

Each woman has to make such a personal choice about the treatment. I personally think that with so many studies conflicting with each other, all you can do in the end is find a doctor that will listen, tune into your own inner wisdom and choose what feels right to you. I think the best hope is the treatment course that you can most believe in.

I am 40, in good health, with no lung or heart problems. it was my right breast and i decided to take the risks. I hope to heaven it never comes back. 

That's just me.