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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@cfetoday

I understand your anguish. I have had my third surgery for DCIS. Intermediate grade. First two surgeries could not get a clear margin. Waiting 3 weeks for the path report on this last surgery. I am also very confused on the treatment of this. The first surgeon told me it will definitely turn into an invasive cancer. How does he know that? The surgeries were not bad and I did prefer removing it rather than working about it being there, but three surgeries!

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cfetoday,
I wanted to let you know I met with the new surgeon and he was awesome. He wasn’t surprised and agrees with my Oncologists that more needs to be taken out.

He also said that since DCIS is invisible, sometimes it does take more than one try to get clear margins and that he had to go back 4 times with one of his patients. I don’t think it’s extremely common, but good to know that apparently it does happen sometimes.

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@mchler73

cfetoday,
I wanted to let you know I met with the new surgeon and he was awesome. He wasn’t surprised and agrees with my Oncologists that more needs to be taken out.

He also said that since DCIS is invisible, sometimes it does take more than one try to get clear margins and that he had to go back 4 times with one of his patients. I don’t think it’s extremely common, but good to know that apparently it does happen sometimes.

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I just had similar surgery and am waiting on pathology report. I am learning new information through this group. Now I will think about getting two opinions on treatment, clear margins etc.
I got two opinions before picking a surgeon so it makes sense to see two oncologists too. Thank you for sharing.

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I was diagnosed with DCIS after biopsy. I've had three lumpectomy's and am waiting on results from the third one. The last lumpectomy I had done I switched to a breast surgeon specialist and not a general surgeon. I would recommend going to a specialist. I wish I had the 1st time. Honestly the lumpectomy was not very painful. My breast was sore for a couple of days and wearing a bra day and night was a bit uncomfortable. I am just mad about this being my third surgery. I am more worried about radiation and how safe it is?. I have also heard some people have bad side effects from tamaxoflin. I know the MAO clinic has a utube video with a panel of doctors questioning whether this is being over treated. If they do recommend a lumpectomy I would go to a breast surgeon specialist. Good luck to you.

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@cfetoday

I was diagnosed with DCIS after biopsy. I've had three lumpectomy's and am waiting on results from the third one. The last lumpectomy I had done I switched to a breast surgeon specialist and not a general surgeon. I would recommend going to a specialist. I wish I had the 1st time. Honestly the lumpectomy was not very painful. My breast was sore for a couple of days and wearing a bra day and night was a bit uncomfortable. I am just mad about this being my third surgery. I am more worried about radiation and how safe it is?. I have also heard some people have bad side effects from tamaxoflin. I know the MAO clinic has a utube video with a panel of doctors questioning whether this is being over treated. If they do recommend a lumpectomy I would go to a breast surgeon specialist. Good luck to you.

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My next surgery is on September 28th and hopefully I get clear margins.

I am also nervous about doing 4 weeks of Radiation and the side effects of Tamoxifen. Ugh, this is just a lot to have to think about!!

Are you all healed from surgery? When do you start your Radiation?

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I had my lumpectomy on August 16th, for DCIS. I had a lot of swelling and drainage, and was taken care of by public health nurses, who were in constant contact with the surgeon. The surgeon explained that due to the type of tissue in my breast , he had to do more work than normal for a procedural lumpectomy.I was told my lumpectomy was major surjery and I had 6 weeks of restrictions instead of 3. My next visit with him was exactly 3 weeks later. He did not get enough margin for clear pathology and a hematoma formed in the site. He said the hematoma needed to be removed and more tissue for the pathology report needed to be taken a.s.a p.. I had the surgery that same night. I am 100% better but now very anxious .I go back for pathology tomorrow morning and have appointments already booked for both radiation and chemo doctors. I received that call about those appointments yesterday. I hope my visit tomorrow gives me clarity. . . . .

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@mchler73

My next surgery is on September 28th and hopefully I get clear margins.

I am also nervous about doing 4 weeks of Radiation and the side effects of Tamoxifen. Ugh, this is just a lot to have to think about!!

Are you all healed from surgery? When do you start your Radiation?

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I am healed from surgery. It was not bad at all. Took some Tylenol when I came home. Did not even need the tramodol. I have to get my path report back before I make the decision on radiation which is Oct 5. I know it is a lot to think about but there is a lot worse cancers out there. Just stay positive. I had no problems with any of the surgeries.

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@bettycollins

I had my lumpectomy on August 16th, for DCIS. I had a lot of swelling and drainage, and was taken care of by public health nurses, who were in constant contact with the surgeon. The surgeon explained that due to the type of tissue in my breast , he had to do more work than normal for a procedural lumpectomy.I was told my lumpectomy was major surjery and I had 6 weeks of restrictions instead of 3. My next visit with him was exactly 3 weeks later. He did not get enough margin for clear pathology and a hematoma formed in the site. He said the hematoma needed to be removed and more tissue for the pathology report needed to be taken a.s.a p.. I had the surgery that same night. I am 100% better but now very anxious .I go back for pathology tomorrow morning and have appointments already booked for both radiation and chemo doctors. I received that call about those appointments yesterday. I hope my visit tomorrow gives me clarity. . . . .

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I'm sorry you had to go through so much. I wish you all the best. I sometimes think doctors don't consider the stress this causes.

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@bettycollins

I had my lumpectomy on August 16th, for DCIS. I had a lot of swelling and drainage, and was taken care of by public health nurses, who were in constant contact with the surgeon. The surgeon explained that due to the type of tissue in my breast , he had to do more work than normal for a procedural lumpectomy.I was told my lumpectomy was major surjery and I had 6 weeks of restrictions instead of 3. My next visit with him was exactly 3 weeks later. He did not get enough margin for clear pathology and a hematoma formed in the site. He said the hematoma needed to be removed and more tissue for the pathology report needed to be taken a.s.a p.. I had the surgery that same night. I am 100% better but now very anxious .I go back for pathology tomorrow morning and have appointments already booked for both radiation and chemo doctors. I received that call about those appointments yesterday. I hope my visit tomorrow gives me clarity. . . . .

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Hi Betty, what did you learn at your appointment? Do you have a treatment plan? How are you doing?

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@kathyomaha55

Yes - I had more than 1 MRI guided biopsy. It's kinda like "Battleship" the game - they put a grid up next to your breast - then go to the location like: A5 using the MRI. I thought it was more painful than the ultrasound biopsy. A robot did the actual needle stick - I assume the robot got the "depth" correct as well.

Mine turned out to be IDC - so it was invasive. I did a lumpectomy With 21 rounds of radiation, My OncoDX test was 22, so I did not need chemo. I had no lymph node involvement. Wishing you all the best.

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Will you share with me how radiation was? And when they say radiation is every day is that include the weekends too?

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@tjj2023

Will you share with me how radiation was? And when they say radiation is every day is that include the weekends too?

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Sure! Radiation is 5 days a week, M thru F. I had 21 treatments. The last 5 were "closeup" - so I was on my back. The rest were face down - with the boobs hanging down. Actually I preferred the ones where I was on my back. The actual treatment is just a few minutes. The Terrible fatigue hit me after about 2 weeks. So you have to be prepared for that & baby yourself. If you want a nap - take it! I did find it tedious driving to the hospital each day. Boy, but ringing that bell after my last treatment was so great!! I had 2 friends go with me & we celebrated with a lunch that day. Where I got my treatment - I saw the radiologist every Friday. I used Aquaphor (use what your Dr. tells you) - use it on your nipple too - not just the area involved. I used a certain sleep shirt - as the Aquaphor is very greasy. When I was done never thought I'd get that shirt clean - but Dawn (original blue) finally took out that stain. I didn't suffer from skin burns - but some women do. Mine was also on my right side - if it's on the left, I understand this may affect your heart. Talk to your radiologist about this. My poor nipple will never be the same on the right. Looks like a brown piece of leather.

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