DCIS Lumpectomy without radiation/age 72

Cathey,

I'm not sure why you have the impression that radiation leaves such terrible long-lasting effects. I had lumpectomy plus radiation at age 54. Other than some mild sunburn-like effects at the time of the treatment, I've had no lasting ill effects that have been problematic so far (six years later). Yes, radiated skin is different (so they say), but not in any way that I can see on myself or that has affected my quality of life.

I would not have felt protected by a lumpectomy alone. Plus, as someone who had a new primary cancer detected in the other breast three years later, I can tell you that going through this again is NO fun. If I were you, I would treat your cancer as aggressively as possible the first time around, hoping to avoid a recurrence, especially as 50% of recurrences of DCIS involve an invasive component.

One more thing--I didn't experience any real fatigue during radiation, though I know some women do. However, bear in mind that women who sail through radiation are less likely to post extensively on these boards. Many of the posts here involve women who have had problems. I'm not minimizing their problems, just saying that these boards might present a somewhat skewed picture.

Hi,

I'm no sorry you're in the position of even having to figure this out!  The doctors use several factors to try to define your risk of recurrence:  nuclear grade, margin size, and size of the original DCIS lesion (that is, size of the actual lesion, as defined by pathology after surgery, not the original size estimated before surgery).  Some systems for estimating risk also include age as a factor - and being over 60 is to your advantage in that case.

One of the commonly referenced recurrence risk indicators is called the Van Nuys Prognostic Classification (VNPI).  I'll see if I can get it to post below.  ("BCS" means "Breast Conserving Surgery" - that means lumpectomy).  There have been quite a few studies using it, trying to determine how accurate it is.  Most agree that the lower scores come out with no or very little gain from radiation therapy.  How the VNPI works is that you look up the characteristics of your DCIS in the first table, and add up the points.  Then you look up the risk of recurrence in the second table, based on your score.  I'll give a couple of examples below the charts.

The charts wouldn't post   So I went through and wrote it up mannually.  Here you go:

Van Nuys Prognostic Classification (VNPI)

• 2003 Update PMID 14682107 -- "An argument against routine use of radiotherapy for ductal carcinoma in situ." (Silverstein MJ, Oncology (Williston Park). 2003 Nov;17(11):1511-33; discussion 1533-4, 1539, 1542 passim.)
  • 706 patients with DCIS, 426 excision alone, 280 excision + RT.

1 point items:

Size:  <=15mm

Grade:  Grade I-II

Margin:  >=10mm

Age:  >60

2 point items:

Size:  16-40mm

Grade:  Grade I-II + necrosis

Margin:  1-9 mm

Age:  40-60

3 point items:

Size:  >40 mm

Grade:  Grade III

Margin:  <1mm

Age:  <40

Total your score

10 year VNPI Local Recurrence (LR) Rates

[BCS= Breast conserving surgery.  RT=Radiation Therapy]

6 points or less:

Overall LR: 3%

BCS Alone LR: 3%

BCS+RT LR: 3%

7-9 points:

Overall LR: 27%

BCS Alone LR: 36%

BCS+RT LR: 21%

10-12 points:

Overall LR: 66%

BCS Alone LR: 88%

BCS+RT LR: 41%

VNPI Treatment guidelines:

• 4-6 points: BCS alone
• 7-9 points: BCS + RT
• 10-12 points: Mastectomy

Example #1:  Low-grade DCIS, 1.2 cm, smallest margin .5cm, age 72.  Score would be 1+1+2+1 = 5.  According the the second table, that would put the risk of recurrence after 10 years at 3%, regardless of whether or not the patient did radiation. 

Example #2:  High-grade DCIS, 2 cm, smallest margin .5 cm, age 72.  Score would be 3+2+2+1 = 8.  With this combination, the risk of recurrence within 10 years with just surgery and no radiation is estimated at 36%.  Radiation cuts that risk down to 21%. [Some other studies cut the risk even further, but in the VNPI, it's down to 21%]

I hope that helps!  Without knowing the characteristics of your DCIS, I cannot estimate how high your risk of recurrence might be.  But with that information, you can use the VNPI or one of the other indicators to make a more informed decision about radiation in your case.

I wish you the best, whatever you decide to do!

Linda

I think this can all be summed up by saying my doc has expressed to me that cancer spreads very slowly in the over 70 crowd (I was talking to her about my mother - over 70 with suspection of DCIS - mammo)..  So considering you are starting with a non-invasive stage if you had an honest talk with your general practioner rather than just "go along" with the radiologist oncologists.. he/she might explain why that is (that cancer grows more slowing in the elder population) you might get some support for opting out of radiation.. Good luck and please let us know how things went!!  Best

Okay, I went back and just wrote out the Van Nuys Classification categories.  (See my original post.)  I hope that helps.  Please feel free to ask more questions as they occur to you...

Linda

I'm wondering the same thing, although my age is 52 -- I have low-risk DCIS that was only 3 mm -- all gotten in the original biopsy, weakly + estrogen & progesterone receptors.  Grade 2 changes.  Small amount of necrosis.  Are there others "out there" who have elected not to do radiation?  My radiation oncologist and surgeon really left the door open for me to decide b/c of the "limited benefits."  I'd appreciate hearing your personal experiences/choices, versus "advice."

I would like to thank everyone who has shared so far -- I really appreciate the recap of the Van Nuys scale and its explanation -- also I appreciate knowing that others DO face this decision-making because of  (yay!) earlier detection.  Paradox.  I do note that for 7 points on the Van Nuys scale (I have a "6"), the local recurrence rates w/o radiation jump to 36%.  That is a big difference from 3% for a 6 point tally.  Hmmmm  . . .

Thank you, Eldub, very helpful questions to consider re: margins & necrosis -- intuitively I knew that if there were necrosis, it meant that cell-death was occurring, so faster spread of cancer cells . . . also, the microcalicfications had NOT shown up in as much detail on the mammogram one month beforehand.  hmmm.  So, I'm going to get a second opinion by a top radiation oncologist in a close-by city and see what they think about my path report.  I appreciate the explanation about the "planes" of the "globe," which makes total sense . . . b/c, if the DCIS is so "new," or small why is there necrosis?

 Bless you for taking the time to answer!   My doggie, Hanney, sends her thanks, too.  She had two breast surgeries the same week I did!  How's that for togetherness?

Hey Hanney's "mom" ,

Glad that was helpful!  To answer your question, there have been quite a few studies trying to replicate the Van Nuys stats.  (You can go to Google Scholar and then type in Van Nuys Prognostic Classification (or even just VNPI) and get a host of stuff.  Beware of the older studies, though.)  Anyway, most everyone else gets lower recurrence rates than the original VNPI, but the general categories seem to hold - meaning that women with the lowest scores have the lowest risk of recurrence (and no or very little benefit from radiation), and those with higher scores have higher risk.  The VNPI was based on a single study of 706 women treated at a single institution.  The advantage to that is that, at least in theory, there should be relative consistency in both diagnosis and treatment processes.  But whatever weaknesses existed at that institution applied to all patients, too.  Also, some of what are developing as norms in DCIS treatment didn't apply to the 706 women in the study.  For example, almost no place would consider a margin under 1mm as acceptable - there would be re-excision.  So the "margin <1mm" category would not exist.  Later studies have shown that the real cut-off seems to be at 2mm - that is, there is very little difference in outcome between a 2mm and a 8mm surgical margin (>10mm is better, though).  <2mm increases recurrence risk.  So in the end, it looks to me like the VNPI is a useful tool to figure out what type of risk you are facing given the factor of your diagnosis, as long as you don't get too hung up in the actual percentages.  Some doctors rely on it, some disregard it completely, and most seem to use the general categories to help inform their recommendations.  (Have you seen the Standard of Care paper for DCIS?  That also talks about risk of recurrence and who might be able to skip radiation.  In includes the VNPI, but also many other studies.)

Anyway, hope that helps!

Linda

peb,

I don't know how extensive or what grade your DCIS is. However, do bear in mind that half of all recurrences of DCIS are invasive. That's why some of us went ahead with radiation despite our concerns about it. 

Barbara