I am 58 and just diagnosed by needle biopsy with DCIS intermediate stage, cribriform, 6 cm single duct involvement. MRI showed some "puddling" of blood vessels at the site but doesn't appear to have any nodes involved. Due to have a mastectomy (with removal and testing of the medial node) with reconstructive surgery in 3 weeks. Will be receiving DNA test results tomorrow. Any opinions on having a double mastectomy if the results are positive? This whole thing seems to be radical, but very thankful it was discovered so early. Tiny calcifications, extended area, not apparent on last years digital mammogram. I would love more information.
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Q: Just diagnosed by needle biopsy with DCIS intermediate stage,
Answers (1)
8/20/09 1:01pm
Maria, please clarify - what are "DNA results"? Genetic testing for the BRCA genes? or something else?
With DCIS, I'd assume no lymph node involvement, since that's the definition of DCIS - no spread beyond the ducts. In my opinion, having a single mastectomy (vs. lumpectomy) is already very aggressive; I'd question having a double. Please read our post on more women choosing double mastectomies for some good information on this subject.
One reason to choose a double might be the cosmetic results of reconstruction. if you're very large breasted, it's often difficult to build a match. However, keep in mind that a mastectomy is much more serious surgery than a lumpectomy, and a double mastectomy even more aggressive and serious.
Bototm line: tough decision, and only you can make it. Good luck with whatever way you go, and I hope your lymph nodes are clear. PJH
8/25/09 4:36am
I had genetic testing for the BRCA genes. They will be testing one lymph node and using two different dyes to check for "hot" or "blue" spots during the surgery. I went to two different physicians. I quit the first one when she wanted to do a lumpectomy with radiation but wouldn't tell me the name of what she was looking for and when I expressed concern at the 3-4 inch incision with radiation, and again asked what it was called she would be looking for, she commented that she was surprised that I was worried about a scar when we were talking about cancer-I again asked what kind and she said she would know after the surgery and she didn't want me "worried and upset". The second physician and plastic surgeon agreed with the first on the need of a lumpectomy but both thought that I would be happier with the results of a mastectomy. I am very concerned about radiation because my father and aunt died very young from heart attacks-I know that radiation is much better now-but it still concerns me. Three questions: Is it very unwise to refuse radiation if the margins are clear? Does DCIS always become invasive? I donate blood, did I have cancer if I am asked- if the duct is removed and it was never diagnosed more than DCIS? I was told that it is offically not cancer until it becomes invasive. Thank you for your time!
ps I am having a hard time getting this reply to post. so using a differnent email
Hi Maria - Sorry you had trouble posting. Our system sometimes acts up here... Is it unwise to refuse radiation? Yes, in my opinion. Radiation definitely lowers your risk for recurrence. However, once you get your full results, and you find out just what your recurrence risk is, you might want to balance your fear of recurrence against your fear of damage from the radiation. As you say, radiation is much improved over what it used to be; and personally I wouldn't worry about heart damage, but I can understand your fears, given your family's experience with it.
DCIS doesn't always become invasive. In fact, it's estimated about 40% of cancers - mainly DCIS - would disappear spontaneously, if left untreated. (But who wants to leave their cancr untreated to find out? That's the rub.)
Even though DCIS is a pre-cancer, I'd still find out what the Red Cross' policy is on it. I'm sure they have a policy covering all kinds of cancer. I know, in general, they don't want your blood for at least 5 years afterwards; not sure beyond that.
Good luck - PJH
8/25/09 8:19am
Thanks for your comprehensive answer-got another couple:
If we do a lumpectomy to remove the duct, and the margins are clear, and I have no radiation, what is the percentage of recurrence? If I have the mastectomy I won't have to have radiation, unless it is in the lymph nodes(highly unlikely). What is the percentage of recurrence? I worry a little about the "cut it all out" philosophy. But I sure don't want to be stupid. I saw a friend's reconstructed mastectomy with nipple reconstruction and it looked and felt surprisingly good-except for the scar where she had a lumpectomy. They had to cut around the scar tissue and replace the skin. Hindsight, she would have been better off with a mastectomy to start with-different cancer-she had a couple of large lumps that reoccured after removal. So can't compare process-just results.
8/25/09 9:42am
Maria, ask you doctor about those recurrence risks - they vary for each individual woman, and only s/he will have the information necessary to assess this.
You might actually have a better result with mastectomy and reconstruction, if your tumor does turn out to be as large (6cm) as it seems. Sometimes lumpectomies for large tumors turn out to be kind of unsatisfactory... And mastectomy would definitely reduce your risk of recurrence (esp. if you didn't have radiation with a lumpectomy), though it doesn't in fact increase your 5-year survival rate, surprisingly...
Hope this helps you make some decisions here - PJH
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By Maria— Last Modified: 12/27/10, First Published: 08/20/09
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I had genetic testing for the BRCA genes. They will be testing one lymph node and using two different dyes to check for "hot" or "blue" spots during the surgery. I went to two different physicians. I quit the first one when she wanted to do a lumpectomy with radiation but wouldn't tell me the name of what she was looking for and when I expressed concern at the 3-4 inch incision with radiation, and again asked what it was called she would be looking for, she commented that she was surprised that I was worried about a scar when we were talking about cancer-I again asked what kind and she said she would know after the surgery and she didn't want me "worried and upset". The second physician and plastic surgeon agreed with the first on the need of a lumpectomy but both thought that I would be happier with the results of a mastectomy. I am very concerned about radiation because my father and aunt died very young from heart attacks-I know that radiation is much better now-but it still concerns me. Three questions: Is it very unwise to refuse radiation if the margins are clear? Does DCIS always become invasive? I donate blood, did I have cancer if I am asked- if the duct is removed and it was never diagnosed more than DCIS? I was told that it is offically not cancer until it becomes invasive. Thank you for your time!
ps I am having a hard time getting this reply to post. so using a differnent email