Diagnosed with DCIS: How do I decide on treatment?

Posted by tctredwell1 @tctredwell1, Aug 23, 2022

I was diagnosed with DCIS. I have to go in for a breast MRI with contrast tomorrow to see how active the cancer is. If it’s contained and not very active, do I have to have a lumpectomy?

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@jennie23b

It is absolutely an individual decision and no one’s diagnosis is the exact same. We are all unique yet we have a common enough thread for us to understand one another.
I also opted to have radiation. My surgeon encouraged it. I did 25 rounds. 5 days a week no weekends. I will be honest, around day 14 I felt the burn and lathered in the cream they prescribed me. But everyone’s skin is different I pray that you fair it well. After radiation was done I began Tamoxofin, as I am estrogen and progesterone positive. I wish you well on your radiation journey. It goes quick I can at least promise you that.

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Thank you so much. I've had a conversation with the radiologist. I asked many of questions cause at first my mind was set on doing only the 5 years of pills, as I spoke to my surgeon first about it and she told me if it was her, she would do the pill. The pills work on both breast where the radiation is focus on that 1 breast. Now with me knowing about the burns and then thinking about just maybe there might be a piece that my Dr did not get, and the machines are not able to detect it I decided to do it. She also told me I hit a record in that hospital, and I am looking at her dumb founded lol ok so what do you mean! She said out of all the people she seen for DCIS I broke the record of having the biggest. Oooh k!! She said I was 12 cm and that's y I was cut corner to corner. Me my son and husband looked at each other paused for a min and right then it made me realize, do radiation just in case, even though my Dr said she has gotten it all out and she also taken a lot of my tissues and nipple all was checked and everything was normal. Me I'm a joker asked her well can I have my nipple and breast tissues back haha. I also got some information from family members of mines that went through radiation said, Peaches get some pure coco butter and apply it way before you have the radiation which helps and keeps it from burning and turning dark. My Dr said they will give me a cream, but I shouldn't have any issues. Keeping my fingers cross and remembering your message 😉 Shoot I get enough burns cooking at home frying chicken lol. I can't remember but I think that is the same meds I will be getting also that you're taking. I can't swallow pills, but she did show me a picture and it is about the size of a baby aspirin. I also wanted to know the side effects...You're in my prayers.

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@lmcintosh

I’m sorry you have to walk this out, it’s a lot. I just had a bilateral mastectomy with sentinel node biopsy on Feb 7th after finding dcis in left breast . My risk factor was high for recurrence with lumpectomy and radiation so I decided to take my best odds with mastectomy and also remove my right one so I wasn’t waiting for it to turn on me. Now my odds are even better to not have to deal with an invasive cancer. Praying for ya!

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Hi. Hope you have a speedy recovery.

I was diagnosed with DCIS with micro invasion on right breast. Surgeon recommended mastectomy so I’m seriously considering bilateral. Going to see a 5th plastic surgeon today as I’ve had issues finding both surgeons that work out of the same hospital. Did have nipple sparing or were they removed? How is your pain management so far?
Praying for you

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I also had DCIS, had a lumpectomy, 20 rounds of radiation, and have now been on tamoxifen for 2 1/2 years. I have no side effects.

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@angepatri

Hi. Hope you have a speedy recovery.

I was diagnosed with DCIS with micro invasion on right breast. Surgeon recommended mastectomy so I’m seriously considering bilateral. Going to see a 5th plastic surgeon today as I’ve had issues finding both surgeons that work out of the same hospital. Did have nipple sparing or were they removed? How is your pain management so far?
Praying for you

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I did bilateral mastectomy with flat closure. My pain level has never been over a 5. Honestly I had more trouble with the oxy, it was too much. (10mg -Dizzy,hot flashes, blood pressure dropped) while getting it through the iv. Dropped dosage to 5 mg orally with Tylenol was better. I took the oxy for 5 days and then switched to Tylenol only. Got my drains out today (2 weeks) and will not have to do meds for being Er positive since it was not invasive. I didn’t need a plastic surgeon my Oncology surgeon did it all. I am able to start moving and stretching my arms more this week. I’m still tired but feel pretty good considering. It’s alot but I felt like the bilateral mastectomy with no reconstruction was the quickest and best % of recurrence way to go. My goal was no cancer and the least amount of trauma on my body.

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I was diagnosed as DCIS in Situ: Solid intermediate nuclear grade, Margins Clear
Had surgery on 1/25/23
Seen oncologist today for treatment, he told me that I need chemo once a week for
12 weeks. It is just sinking in. I thought my diagnosis does not require chemo.
I have 1st round in one week but I am now anxious to get a 2nd opinion.
Has anyone gotten chemo for this grade of breast cancer? I am not eligible for
the MRI because I have only 1 kidney.

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I had a DCIS diagnosis and had surgery for a very small (6mm x 4mm) area 9/22. I had 5 radiation treatments and am now on Aromasin for 5 years. No mention of chemo for this diagnosis. I have not heard of others receiving chemo for this either, but perhaps there is some other circumstance that chemo is indicated for? How large was the area? Was there an invasive component discovered during surgery?

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@audrirose

I was diagnosed as DCIS in Situ: Solid intermediate nuclear grade, Margins Clear
Had surgery on 1/25/23
Seen oncologist today for treatment, he told me that I need chemo once a week for
12 weeks. It is just sinking in. I thought my diagnosis does not require chemo.
I have 1st round in one week but I am now anxious to get a 2nd opinion.
Has anyone gotten chemo for this grade of breast cancer? I am not eligible for
the MRI because I have only 1 kidney.

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@audrirose are you triple negative (ER, PR and HER 2 negative?) Or HER2+? Did you have an Oncotype Dx test?

If you were ER+ and HER2- an Oncotype usually guides treatment decisions.

I think a second opinion could help you in this situation!

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@audrirose

I was diagnosed as DCIS in Situ: Solid intermediate nuclear grade, Margins Clear
Had surgery on 1/25/23
Seen oncologist today for treatment, he told me that I need chemo once a week for
12 weeks. It is just sinking in. I thought my diagnosis does not require chemo.
I have 1st round in one week but I am now anxious to get a 2nd opinion.
Has anyone gotten chemo for this grade of breast cancer? I am not eligible for
the MRI because I have only 1 kidney.

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Yes, get another opinion. Or have another conversation with him and see if he meant radiation? If not invasive, most treatments options include lumpectomy, radiation and meds.

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@audrirose

I was diagnosed as DCIS in Situ: Solid intermediate nuclear grade, Margins Clear
Had surgery on 1/25/23
Seen oncologist today for treatment, he told me that I need chemo once a week for
12 weeks. It is just sinking in. I thought my diagnosis does not require chemo.
I have 1st round in one week but I am now anxious to get a 2nd opinion.
Has anyone gotten chemo for this grade of breast cancer? I am not eligible for
the MRI because I have only 1 kidney.

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I had the same diagnosis. Had a lumpectomy on 1/24 and having a second on 2/28. The margins were clear but they were too small. I had a recent diagnostic mammogram that shows no micro invasions. She oncologist and she said 5 years of hormones. My surgeon says this is always followed with radiation. I have 2 appointments coming up. One is with a radiologist at Proton center the other is with regular radiation oncologist. We are going to see what is the best route. I would definitely get another opinion. I have not heard of anyone having chemo for this diagnosis.

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