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Infiltrating Ductal Carcinoma with DCIS

Busymom0413
Posts: 8
Joined: Sep 2012

I was wondering if someone can explain this to me. I had a lumpectomy in 8/2011 and no clear margins, then I had a bilateral mastectomy in 11/2011 and just read all of my reports. What exactly is infiltrating ductal carcinoma with DCIS. I was diagnosed Stage 1 Grade 1, I had a KI67 score of 25%. Does hat mean I had IDC people always ask and I just say stage 1, is it the same as Invasive Breast Cancer. I read tha 25% of the Ki67 score is considered high. My OncoDX was 11. I did not need chemo or rads. I take arimidex. Everthing is so confusing. I probably should not be concerned about any of it since I hopefully got everything just curious and would like an explanation. Thanks for everyone help. This site is great

nanniebgood
Posts: 42
Joined: Oct 2012

I know how you feel, i had IDC, so i don't know if infiltrating was the same, sounds like it would, sometimes i think we are better off not reading all of our reports, there is something to said for "ignorance is bliss", although i read every one i can get my hands on too. i do have a question, since like you im on arimidex, did you have any problems with it or how long did it take if you did, i feel so crappy all the time, im still have a drain in my affected side, its been a month and still draining, my poor site is still so black and blue, i don't think it will ever heal, i think im just tired of hurting, my right side is doing great, of course it wasn't sick either, im still so new at all this, i wonder about the arimidex, grateful that it is all i have to have, but like you i wonder if my IDC has been there a while, and running amuck thru lymph system, although not in nodes, my onco score was 13, does the thoughts "I have breast cancer" ever leave your mind, maybe in time it will, im sure this didn't help you one bit, but i feel a kindred soul in you, i have added you to my ever growing prayer list, i hope tomorrow will be a good day for us both, take care

Busymom0413
Posts: 8
Joined: Sep 2012

Hey nanniebgood. Sorry to hear about your diagnosis too. I had my drains for a month they were so annoying. I had my tissue expanders 8 1/2 months. I just had my permanent implants put in 3 weeks ago and it was so much easier, I am still sore but I did not need drains this time. I started taking arimidex 1 month before my mastectomy and I will be taking it a total of 5 years. I have had alot of joint and muscle pain and tired. My back hurts quite a bit. Terrible finger and hand pain and foot and ankle pain. I am now finding out that it could be hyperparathyroidism. I had a checkup with my endocronogist in August and was telling him how I felt and since I have never complained to him in all the 8 years I have seen him for my thyroid disease he ran some tests and things are looking like hyperthyrodism, alot of the same systems from arimidex. I have had a bone scan to check for metastises and all good and had a bone density, not as good. I have a parathyroid scan and ultrasound scan week and then I see a surgeon to see if he can remove them without destroying my neck. It is normally a simple procedure as long as surgeon can locate them easily. I hope my neck really lights up and will be easy to find. I read that this surgery could really help if that is my problem and not the medicine. I really do not want to come off the arimidex for a month or so to find out, it makes me nervous not to take anything. I should be starting reclast infusion in a month or so due to ostopenia from the arimidex in the last year and my high calcium levels. High calcium levels is bad for your bones and with that an arimidex I am at a very high risk for osteoporosis now. Now that I have my permanent implants I do think it might start leaving my mind as long as the horrible tissue expanders were in it was so uncomfortable it neve went away. I think after my neck surgery with the nipple grafting I will be able to kind of forget. I sometimes feel guilty for not having chemo when people say oh no chemo like well you don't have cancer then. Then I say no I only had two breast cut off. It is still not easy and very thankful I did not need chemo. Best of luck Keep me posted on your recovery would love to hear how you are doing. We seem to be alot alike

Busymom0413
Posts: 8
Joined: Sep 2012

Hey nanniebgood. Sorry to hear about your diagnosis too. I had my drains for a month they were so annoying. I had my tissue expanders 8 1/2 months. I just had my permanent implants put in 3 weeks ago and it was so much easier, I am still sore but I did not need drains this time. I started taking arimidex 1 month before my mastectomy and I will be taking it a total of 5 years. I have had alot of joint and muscle pain and tired. My back hurts quite a bit. Terrible finger and hand pain and foot and ankle pain. I am now finding out that it could be hyperparathyroidism. I had a checkup with my endocronogist in August and was telling him how I felt and since I have never complained to him in all the 8 years I have seen him for my thyroid disease he ran some tests and things are looking like hyperthyrodism, alot of the same systems from arimidex. I have had a bone scan to check for metastises and all good and had a bone density, not as good. I have a parathyroid scan and ultrasound scan week and then I see a surgeon to see if he can remove them without destroying my neck. It is normally a simple procedure as long as surgeon can locate them easily. I hope my neck really lights up and will be easy to find. I read that this surgery could really help if that is my problem and not the medicine. I really do not want to come off the arimidex for a month or so to find out, it makes me nervous not to take anything. I should be starting reclast infusion in a month or so due to ostopenia from the arimidex in the last year and my high calcium levels. High calcium levels is bad for your bones and with that an arimidex I am at a very high risk for osteoporosis now. Now that I have my permanent implants I do think it might start leaving my mind as long as the horrible tissue expanders were in it was so uncomfortable it neve went away. I think after my neck surgery with the nipple grafting I will be able to kind of forget. I sometimes feel guilty for not having chemo when people say oh no chemo like well you don't have cancer then. Then I say no I only had two breast cut off. It is still not easy and very thankful I did not need chemo. Best of luck Keep me posted on your recovery would love to hear how you are doing. We seem to be alot alike

cinnamonsmile
Posts: 1039
Joined: Dec 2010

DCIS is cancer within the milk ducts, and is stage 0. IDC is cancer that is outside the milk ducts and stage from 1-4. IDC is invasive breast cancer since it is not within the milk ducts. If you have DCIS and IDC, your stage and treatment is geared towards the higher stage. You would be stage 1 IDC, with DCIS Stage 0.

Depending on the amount of cancer out of the milk ducts, you could be DCIS w/microinvasion, which would still be stage 1. I don't know the amount that differentiates between DCIS w/microinvasion Stage 1, and just stage 1.

Since you are stage 1, they should have done a test to see if you were her2 positive or negative.

breastcancer.org discussion boards has a forum for DCIS w/ microinvasion that is her2 positive. You could probably post there even if you don't know your her2 status. There is a wonderful woman named Beesie that is the site expert on DCIS and DCIS w/microinvasion.

You could also probably benefit by looking at the cancer information at cancer.org (The American Cancer Society) and breastcancer.org. Both have wonderful information. I know breastcancer.org has some illustrations that are really neat because it helps understand
things.

I don't know much about IDC (invasive breast cancer) and onco testing.Hopefully someone can help you with that.

Busymom0413
Posts: 8
Joined: Sep 2012

I have read alot of the information on the different websites just not sure how it can be invasive with ductal carcinoma in situ. I was Her2 negative. I do remember reading something about micro focal as well. I guess I will have to go reread some of the information. Thats for your help

cinnamonsmile
Posts: 1039
Joined: Dec 2010

Many women have both. More than likely your cancer started out in the milk ducts and broke through into the breast tissue. Once cancer leaves the milk ducts and breaks through, it is no longer DCIS, but IDC.

What it means is that you have cancer in your milk ducts (DCIS) and in the breast tissue outside the milk ducts (IDC). Basically you have two types of cancer in the breast. The cancer is in two different places, in the milk ducts AND outside the milk ducts.

I copied this from breastcancer.org:

Invasive (IDC) means that the cancer has “invaded” or spread to the surrounding breast tissues. Ductal(DCIS) means that the cancer began in the milk ducts, which are the “pipes” that carry milk from the milk-producing lobules to the nipple. Carcinoma refers to any cancer that begins in the skin or other tissues that cover internal organs — such as breast tissue. All together, “invasive ductal carcinoma” refers to cancer that has broken through the wall of the milk duct and begun to invade the tissues of the breast. Over time, invasive ductal carcinoma can spread to the lymph nodes and possibly to other areas of the body.

I really think you should go to the breastcancer.org's DCIS discussion boards and look up posts by Beesie, and check out DCIS w/microinvasion that is HER2 positive and the Stage 1 forums. Even though you aren't Her2 pos, I think the people there could really help you out.

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