DCIS lumpectomy without radiation?

I was recently diagnosed with DCIS. My visit with the surgeon was that I probably wouldnt need radiation but he would know more after the MRI and lumpectomy. He definitely said no tamoxifen. I had read so much info prior to my meeting with him, so I almost thought that was odd.

It was just over two years ago that a routine annual mammogram done during my lunch hour in my early 40s revealed a cluster of micro-calcifications that led to a stereo. biopsy and a diagnosis of grade 2 dcis. Although a complete shock (no risk factors, blah blah blah), I knew making an educated decision was important; it also gave me a feeling of control in a totally uncontrolled predicament. So I researched which bc center was the most reputable and who was the head surgeon there, and that is who I put my trust in. I followed the advice of that bc surgeon, who put it bluntly that if I didn't want rads, then I should have a mastectomy.

We all must look at the pros and cons of the difficult decisions placed before us, but there has never been a single day that I have wished I didn't do rads. Although I do not have any lung issues, my bc was on the left side, so I worried about heart as well as lung impact.

Your grade is higher than mine and your dcis is slightly more than I had (~ 3cm). In my final lumpectomy pathology report, a trace amount of idc was detected, which didn't change my treatment plan, but it did demonstrate how important it is to take dcis very seriously and I continue to be happy that I zapped the heck out of any remaining cells, albeit dcis or stray idc. I hope to be here for as long more as I've already been here, so thank you rads if you made that possible. Wishing you the very best decision for you and that you have good inner peace with it.

* edited to fix typo and also to add that I, too, think "it odd" that a woman under 40 with hormone positive dcis (Lisa) would not be advised to undergo rads after a lumpectomy and also consider tamoxifen. Perhaps there is something else that the surgeon is waiting to better understand from the mri?

Often a mastectomy can be done with no radiation when the diagnosis is DCIS...it sounds drastic, I had a double mastectomy due to DCIS...but I did not need radiation or chemo...

Wishing you the very best...

I have chosen no radiation and no tamoxifen despite my Drs recommendations. I have done two years of intense research on DCIS and I fully understand the risks and statistics. However, my decision is the only decision that feels right for me and my particular situation (low grade; 4cm; 1 close margin; ER+/PR+; 46 years old). I just created a website (still a work in progress) to share my story and offer resources I have discovered along my DCIS journey of two years. It is (www.dcis411.com). I am very grateful to have found Sandie Walters on this site who created a website called "DCIS without Rads" and introduced me to Dr. Lagios who is a DCIS expert and offers 2nd opinions on pathology plus evaluates your individual case as to whether or not you could safely forego radiation based on the Van Nuys Prognostic Index. I have mostly been influenced by Dr. Laura Esserman from UCSF who has made some very bold statements about re-thinking treatment for non high grade DCIS. She has given me great peace of mind. I am scheduling a 2nd opinion (actually 4th opinion!) with her in the next month or two. Also, Dr. Melvin Silverstein in Newport Beach, CA can offer another option -- lumpectomy plus reconstruction if you are interested in an alternative to mastectomy. I truly appreciate and respect everyone's personal stories and decisions. DCIS is not an easy diagnosis -- no matter what!! I also post a lot of health-oriented information on a facebook group called "Donna's Choice: Global Healing From The Inside Out." Peace, love and good health to all.  ~ Donna Pinto

Pcollins, Just sharing my experience. I fought like hell to avoid a mastectomy but after 3 lumpectomies and no clean margins, I gave in. My silver lining (since it was my left breast) was not needing rads. My grade was 3, also. I had immediate reconstruction. Now it's a little more than a year later and I feel pretty good about the decision. 

 I feel like I'm not being helpful but what I came across last year (and I also consulted Dr. Lagios and a a few other surgeons) was that if your grade is high you will most likely have a tough time finding a doctor who tells you it's OK to skip radiation.

 It's unfortunate that at this point so little is known about DCIS, recurrence, and predicting what it will do.  Have you talked to specialists (pulmonologists, radiologists) about the potential effects of radiation in your case? 

 Sending all good wishes your way,

Jill

Dear PCollins:  Research, as well as the Radiation Oncologist I consulted with both indicated that radiation CAN damage the lungs.  The RO wanted to listen to my lungs and said that the radiation can leave scars on the top of the lungs.  Perhaps in your case, since there was not evidence of invasive disease, they felt it was safer to forgo radiation.  Otherwise, my research is indicating that lumpectomy with radiation is the standard of care, unfortunately, because I, personally, would rather NOT do it.

Lisa75 - The daily rad trips were a big pain, I'll admit, but what is your dr recommending? Did you have your mri yet? Have you scheduled a surgery date?

Lisa - Hope you have an easy mri tomorrow and receive good news. This period of waiting for appointments and test results is among the hardest in the entire journey, so hopefully you will also soon be able to move forward with the best treatment plan for your medical circumstances.

Good luck with your decision! Hope the RADS are going OK. Just to chime in here, I opted for NO rads and NO tamox after my lumpectomy. My surgeon was comfortable with my decision, due to the size of the lesion, grade and margins. Since then, I have met two other women who did the same thing - no rads or tamox after lumpectomy. I don't think it is that uncommon. But again, every case is different, and you have to do what is right for you.

Also, I know of women who DID have rads/tamox after a lumpectomy, and then ended up having a recurrence of DCIS. So man oh man, each case can be so different.

I also got a 2nd opinion from Dr. Lagios (here in SF) and from talking with him, he is more of a proponent of having clear margins as large as possilbe (at least in my case). He encouraged me to have a re-excision (6 months after my lumpectomy) just to expand the clear margins to decrease my risk of recurrence. (I didn't do it, but it was an interesting suggestion). 

I don't smoke, so can't comment/add anything on that subject, I have muscular dystrophy though and was very concerned radiation would zap what remaining energy I do have. After having lumpectomy of 2 areas (one confirmed DCIS,other suspicious on MRi but ended up being nothing), the surgeon & medical oncologist feel that I won't need radiation, but just tamoxifen for 5 years. We still meet next Friday w/radiation oncologist just to get his take on it all, but sounds like since it was caught so early, was so small, no lymph node involvement, and contained, that I may have dodged the radiation bullet. I should be happy, right? But a part of me just thinks, "well, it seems everyone else is also doing radiation...is it safe for me not to?"...if that makes any sense at all? Will patiently wait till next Friday to get the official word from rad/onc., but think I may be in the homestretch, I guess.

Another question for the group.

I'm in the throws of trying to make decision on lump alone, lump/rads or masectomy for DCIS.

I've seen the studies where radiation can cut the local reoccurance by as much as 50% but I saw another review that also suggested that reoccurance in the opposite breast or another site in the breast seemed to be increased with radiation.  It could be that I was not reading the report correctly but the more I looked at it the more I was convinced that is what they were suggesting.

http://www.breastcancer.org/risk/new_research/20110502.jsp

"Examination of recurrence characteristics showed that 54% of patients in the radiation group had invasive recurrences compared with 38% in the excision-alone group.

Radiated patients were more than twice as likely to have recurrence in a different breast quadrant from that of the primary tumor (28% versus 10%, P=0.0016), constituting a new tumor.

In the excision-alone group, local recurrence accounted for 95% of all recurrences compared with 88% in the radiotherapy group (P=0.08). Distant recurrence was more common with radiotherapy, but the difference did not reach statistical significance (10% versus 3%, P=0.08).

A third of all recurrences came after 10 years of follow-up in the radiotherapy group compared with 9% of recurrences among patients who had only surgery (P<0.001).

Excision alone was associated with a small, but statistically significant improvement in breast cancer-specific survival (99.7% versus 98.3%, P=0.02)."

I'm not an expert and reading this report I see all kinds of contradictions that make it hard to understand what the right thing to do is.

Any one else seen this and read it differently?

Hello everyone,

Just wanted to say that I just found your great site dcis411....to clarify, I have not yet had a biopsy or been diagnosed with DCIS.  I've posted extensively in another thread "worriied but not diagnosed" so you can catch up with my story/background there.  But I've had to research DCIS just as if it might be in my future so that I'm prepared for the best way to treat or leave it alone, etc.  I also am a big fan of Dr. Esserman and her outspoken work and support of DCIS patients.

Quick rundown on my situation:  had routine mammo July 2011, called back for views on "small grouping' of microcalcs, rated BIRADS4 and of course recommended for biopsy.  I had to really stand up for myself all along the way.  I refused biopsy until more evidence shows that it's necessary.  My calcs are 9mm (small group), although the initial report didn't even provide a measurement (I had to get that out of the radiologist by setting up a personal face to face consult which was not very instructional).  I'm 55, in menopause, so am aware that calcs often pop up in menopausal years.  After listening to my intensive research and my views, my doctor agreed to a six month follow-up which i just had. Result: no change in the calcs observed in Sept. 2011.  I realize that doesn't necessarily mean anything, but at this time, I want to do surveillance and no biopsy unless warranted.  I also have other health issues that could be severely impacted by invasive procedures, treatments, etc.  This is a huge motivation for me to be highly cautious and conservative about jumping into anything that could harm my overall health and quality of life if it isn't necessary to get into it.  Thanks again for your awesome DCIS site, I intend to be a regular visitor and hopefully contribute whatever helpful info I can to the debate.  I feel all DCIS patients, either diagnosed or just at my level, trying to avoid a biopsy for a potential DCIS, need to band together because unfortunately not all areas of breast cancer forums are supportive.  If it is a low grade DCIS and shows no genetic tendency to be invasive, I absolutely would refuse rads or tamoxifen.  My only known risk factor for bc is that I've never had children.  I don't smoke, don't drink and have no family history whatsoever for bc.  As Dr. Esserman would do, i'm trying to factor my own profile into this while making decisions.  I'm not particularly into alternative medicine, although I do feel diet plays a role in our overall health and we should all strive to live a balanced life. Would love to find a truly good substitute for mammo surveillance, as I HATE the radiation exposure/squashing of sensitive breast tissue.  As usual, the only surveillance technique I've been offered is mammo to keep track of this "suspicious" cluster of calcs.

redsox, great post!

needtono, as I'm sure you know from your research, approx. 50% of women get calcifications. Overall approx. 95% of calcs are benign and harmless, but then there are the 5% that do represent breast cancer, usually DCIS but sometimes invasive cancer.  Most of us who post in this forum are in that 5% group and that shapes our perspective and our choices. I've been in both groups, with calcs in one breast that turned out to be BC and calcs in the other breast that are benign and stable and still there, doing nothing.  I've seen lots of women, either prior to diagnosis or just after diagnosis, who've been certain about what they would do if ever diagnosed with BC. But once they've received the diagnosis and have had time to think about the implications, everything changes. And it goes both ways. Some women assume that they will have a bilateral mastectomy if ever diagnosed - and then realize that a lumpectomy is a perfectly acceptable option and for them, a better choice.  Other women come here thinking that they'll certainly opt for the least amount of treatment possible, and then when faced with the reality of the diagnosis and the associated risks, decide on more extensive treatment, be it a mastectomy or the addition of radiation and/or Tamoxifen.  Until you're faced with the decision and with all the facts about your diagnosis, there is no way to know what you will do. It's all conjecture up until then.   

Given how common calcs are, but also considering the potential risk, it's important that every case of calcifications be addressed according to the specifics of that individual case. needtono, I looked at your previous posts to get more information about your calcifications. The description was "somewhat suspicious" which makes it sounds as though your calcs were border-line between BIRADs 3 and BIRADs4 - probably a BIRADs 4A and no higher. BIRADs 3 calcs are usually put on the 6-month watch list; at most 2% result in a diagnosis of breast cancer. BIRADs 4 calcs are usually recommended for a biospy; on average 20% turn out to be breast cancer, usually DCIS but sometimes invasive.  It seems that the radiologist in your case was cautious in giving you the BIRADs 4 rating. But with an area of calcs that small and not highly suspicious, deciding to wait 6 months rather than have a biopsy is a perfectly reasonable approach. I'd probably do the same.  It's great news that your calcs have shown stability over the 6 months - this makes it even more unlikely that your calcs do represent breast cancer.    

The point that I want to make is for others who are reading this thread, including those who post in this forum who were in the 5% group whose calcs were DCIS. The right approach in one case is not necessarily the right approach in another case. The fact is that most calcs don't require a biopsy. But highly suspicious calcs do - waiting 6 months is not advisable because the calcs might not just be DCIS but they could be harboring a small amount of invasive cancer.  And if diagnosed with DCIS, it's important to not downplay your diagnosis but also to not panic.  Take a deep breath, get ready to learn and be sure to keep an open mind. What you want to do is learn as much as possible about the specifics of your diagnosis and the risks associated with that diagnosis.  Then make your decisions from there. For some, it's very low risk to have surgery alone.  For others, surgery alone is almost a guarantee of a recurrence (and 50% of DCIS recurrences are IDC).   The message for those with DCIS - and the message for those at an earlier stage where calcs have been discovered - is that one approach does not fit all.  You have to find the approach that fits you. And you need to know all the facts about your case and your risks before you can do that.  

Thanks for the indepth info.  My approach if or when I'm ever ultimately diagnosed with DCIS low grade would be to say no to rads.  Even though studies may indicate a similar level of recurrence at 10 yrs for both low and high grade, I still would have to balance the cost/benefit of subjecting my body to rads considering my existing health problems.  Needless to say, I'm sure anyone would like to have a life span of more than 5-10 years.  That's precisely why I would say no to rads with a low grade diagnosis of DCIS.  The impact on my health would not be worth it and if there's a recurrence, I would deal with the recurrence at that point. I think the "what if" approach is  the crux of the problem.  I've read studies that indicate that as we learn more about the true nature of DCIS, in five years, radiation is not going to be the standard of care anymore for low grade DCIS. Nothing in life is guaranteed and there are not 100% answers, and I think everyone understands that.  Anything can happen. Adjustments sometimes need to be made.  Anything can  recur or happen, etc. etc. etc.  But that's not a good reason to get into toxic treatments that could do other harm  - depending on what one's personal health scenario is.   Mine dictates to me ultra caution and that's how I would approach it.  If someone else wants to take rads for low grade DCIS, that's their choice of course. As far as me being lucky to just be in surveillance mode at this point. in actuality, i am having to put up a valiant effort not to cave in and do a biopsy.  I am actually in a very highly pressurized tense situation because I don't think my doctor is going to agree to the continued surveillance  due to the legal perceptions of a patient who wants to monitor suspicious calcs rather than jumping into a biopsy scenario.   So, even though  I don't have a diagnosis, my scenario is very definitely a part of the overall DCIS dilemma.  DCIS is obviously what they suspect (otherwise they wouldn't continue to push for biopsy), so I almost feel like a "cancer" patient even tho I haven't had a biopsy.  The attitude, the circumstances, the pressure is relentless and highly stressful. If necessary i will change doctors and work with someone who is on my team and wants to work with me in a rational, conservative way.  If new evidence presents itself that points to a different approach, I will know it and act accordingly. Thanks again for your detailed info.....it's all very helpful.      

needtono, if your doctor or radiologist agreed to the 6 month wait and watch approach, then I disagree that "DCIS is obviously what they suspect (otherwise they wouldn't continue to push for biopsy)".  Even with most BIRADs4, unless it is a 4C, they do not suspect DCIS.  The definition of BIRADs 4 specifically states that lesions classified as BIRADs 4 "do not have the classic appearance of malignancy".  The reason for the biopsy is because the screening image does not allow the possibility of cancer to be ruled out.  Therefore a biopsy is recommended in order to rule out cancer. That's what a BIRADs 4 means. 

I honestly don't mean any offense but as someone who's gone through the 6 month watchful waiting period (I'm actually in the middle of one now for what appears to be a cyst), and having had 6 biopsies (3 surgical, 3 stereotactic/core needle), countless fine needle aspirations and 1 diagnosis of breast cancer, I can tell you that being in a watchful waiting situation with the possibility of a biopsy looming is a world apart from being diagnosed with breast cancer. That's not to say that the 6 month wait and the idea of having a biopsy and thinking about the possibility of having BC isn't stressful - it is - but it's entirely different from having the actual diagnosis. Speculating on what you might do if something happens is very different than being in a situation where you have to make the decision and live with the consequences.  Worrying about being pressured into a biopsy is different than knowing you have cancer cells in your breast and having to decide what to do about that. 

And ditto to everything redsox said.  Determining which DCIS is low risk and which is high risk is much more complicated that just knowing the grade of the DCIS. If it was just the grade, this issue would have been solved and put to bed years ago. The biomarker research shows a lot of promise but it's at the early stages. Unfortunately breast cancer is not a disease where you know the results of treatment within a year or two - the implications of treatment really can't be assessed for at least 10 years - so it will be a while before we get the answers that we all want - and that assumes that the results in coming years continue to be positive. If they are not, it's back to the drawing board.  Hopefully there will be progress along the way that will be reflected in some treatment changes but expecting major changes in the treatment approach is simply not realistic for quite some time. 

The good news is that you hopefully don't need to be worrying about all this.  Hopefully your current calcs are benign and with luck, you'll never have to deal with calcs - or the possibility of a DCIS diagnosis - again.  And if it should happen that at some point in the future you are diagnosed with DCIS, that would be the time to dig into the research to see what's on the leading edge of then.