Is it absurd?
Hi ladies! I am so happy to have found this board several weeks ago. It has been such a wealth of information, maybe too much!! lol
A little background, my mother was diagnosedin August with DCIS with microinvasion, grade 3. ER/PR-,
So, after her first lumpectomy, her margins were less than 0.2mm, and she was going to have a sentinal lymph node biopsy. So, she had another lumpectomy and the lymph node biopsy on Tuesday. Her lymph nodes were negative, or clear, or no cancer. We are assuming that her margins will be acceptable this time.
She is 66 years old, and didn't originally want treatment. We discussed it, and she agreed to follow her doctors suggestions. At this time she has also been seeing a radiation oncologist, who suggests she start radiation in a few weeks, going 5 days a week for 6 weeks. She really doesn't want to do the radiation. At first, I urged her to follow through with the treatment, but I am beginning to reconsider. I have used various online tools and it seems that the radiation doesn't impact her outcome significantly. In fact, I think that if she ever did have another cancer, radiation wouldn't be an option if we did that treatment now.
Of course, we will discuss this in depth with her team of doctors, however I am wondering if the idea of "skipping" radiation in absurd. I understand it is the standard of care, but is it really neccessary?
Thanks for the insight! (BTW, I also posted this on the Stage I forum, before thinking this maybe the correct place)
Comments
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Is radiation really necessary? Some would say that with Grade 3 DCIS that already had a microinvasion, it is. But others would say that it depends on the size of the margin. Personally I fall in the 2nd camp. If your mother's margins after this 2nd surgery are at least 10mm all around, then radiation could be considered optional. But if her margins are smaller (most docs consider margins to be "clear" after a lumpectomy if they are 2mm or greater in size), then radiation will be much more important to her treatment plan.
Your mother's oncologist and radiation oncologist should be able to provide her with information about her estimated recurrence risk without having radiation, and what her recurrence risk would be if she has radiation. That should help with this decision.
Here are a couple of documents that talk about DCIS recurrence risk after a mastectomy. You can see how important margin size is.
http://www.breastdiseases.com/dcispath.htm
http://theoncologist.alphamedpress.org/cgi/content/full/3/2/94/T2
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Wow, those were great!! her first surgery had margins less than 0.2mm... we are hoping for better margins this time. Thank you so much for the links. It makes me certain that she will need to seriously consider the radiation. She is on the higher end for reoccurance it seems.
Thanks!
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I was going to skip radiation if I had wide margins, BUT, 1) I didn't have high-grade DCIS or a microinvasion, and 2) I had a 1cm clear margin and beyond that 1cm was more DCIS. I personally don't want to have my breast radiated already than it already has, so I'm opting for a skin-sparing mastectomy.
If your mom's clear margins this time are over 1cm, she's probably not taking a huge risk in skipping radiation (I personally would certainly skip it if I had that wide of margins and no further DCIS were still left). But, it's a personal decision and it's also worth a second opinion such as with Dr. Lagios that others have discussed here.
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I struggle when I read that wide margins are almost a guarantee that you got all the dcis. Not necessary true. After my first dcis lumpectomy, I was told that I had very wide margins, and my risk for a recurrence was low. One year later, I was again dx with high grade dcis (with como n)
Beside the leison that showed up on the mri and mammo, my final pathology report showed that high grade dcis was dotted throughout the tissue removed. The margins were not that wide the second time (.003m) According to the pic my bc surgeone had of the space between each dcis markings, the margins aren't that wide.
DCIS can jump about. For this reasons margins shouldn't always be the consideration in the treatment plan. DCIS can often be found in more than one place of the breast. Films don't always show dcis in the breast.
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It's true - there are no guarantees. Wide margins don't mean that we can be sure that all the DCIS is out. And wide margins certainly don't guarantee that there won't be a recurrence. I hope that my earlier post didn't suggest or imply that. What wide margins simply mean is that the likelihood that there may be a recurrence is much less. And with a lower recurrence risk, the benefit from the treatment is less and the risks associated with the treatment become a more significant consideration. However it is important to always understand that a low recurrence is not the same as no recurrence risk. And suggesting that a treatment might not be beneficial does not mean that there is no risk. It simply means that the risks from the treatment may outweigh the benefits that the treatment will provide.
If you have two women with similar diagnoses - let's say that both have a 1cm single focus of grade 3 DCIS - and one has 2mm margins and the other has 10mm margins, then simply because of the difference in margin size, the first woman will have a higher recurrence risk and the second woman will have a lower recurrence risk. That's a fact. The first woman's risk might be in the range of 20%; the second woman's risk might be in the range of 5%. So the first woman is quite a bit more likely to have a recurrence. But it could turn out that the first woman doesn't have a recurrence, while the second woman does. The risk estimates simply indicate what will happen across a group of 100 women who all share the exact same pathology - they do not say what will happen to any individual woman. There is unfortunately no way to know what will happen to any one of us. And even if there is only a 1 in 1000 chance that something might happen, one of us will be that very unlucky 1 in 1000.
Unfortunately there is absolutely nothing that we can do to guarantee that we have no recurrence risk. That's simply the reality we all have to live with after a diagnosis of breast cancer.
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