Right breast cancer DCIS: Is 4-5 weeks of radiation normal protocol?

Posted by m3rt @m3rt, Feb 21, 2023

I recently was diagnosed with (DCIS) stage 1, her2 negative, both hormones positive, 4mm size tumor. I chose to have a lumpectomy and do hormone treatment. The doctor removed 4 lymph nodes in the breast and one sentinel node all were negative for cancer. The tumor was removed January 23, the doctors said because the lump was so small they didn’t do a onco. test, but suggested that I do 4-5 weeks of radiation. I was wondering if 4-5 weeks for radiation is being over cautious? Or is this normal procedure? I will be laying on my back for radiation treatment.

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DCIS, Stage 0, grade 2. Chose lumpectomy - had to have 3 to get clear margins. Now am looking at 20 radiation treatments after CT scan - 16 regular and 4 boosts - starting April 8th. I am also supposed to start anastrozole after last radiation appointment but I really don't want to. I've heard such bad things about it. My oncologist did just prescribe 30 days of it to see how I do instead of going for a 90 days prescription right off the bat. I guess I like that but I'm very nervous about taking it. Also - it's so confusing when people call DCIS non-cancer or pre-cancer and others call it cancer. If it isn't cancer then why do we get treated as if it were cancer? And if it IS cancer then why call it something else? We have the same fears.

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@pattier

DCIS, Stage 0, grade 2. Chose lumpectomy - had to have 3 to get clear margins. Now am looking at 20 radiation treatments after CT scan - 16 regular and 4 boosts - starting April 8th. I am also supposed to start anastrozole after last radiation appointment but I really don't want to. I've heard such bad things about it. My oncologist did just prescribe 30 days of it to see how I do instead of going for a 90 days prescription right off the bat. I guess I like that but I'm very nervous about taking it. Also - it's so confusing when people call DCIS non-cancer or pre-cancer and others call it cancer. If it isn't cancer then why do we get treated as if it were cancer? And if it IS cancer then why call it something else? We have the same fears.

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Hi Pattie,
I have thought about that as well. In the video I linked, the Doctor explains that DCIS and IDC treatment protocols are the same - I believe IDC is DCIS that has burst out of containment. I hope you can check out the video - it became my reference point for making decisions. There are a couple of good discussions about the risk/benefits of medications as well as radiation, etc. I think I have watched it three times now. I think you will find it interesting if you go to the link and start watching at 42:00 minutes - pertains to your situation. Said a prayer for you!

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p.s. ... this is all so difficult - a "crap shoot" as many here have remarked. Your cancer is Grade 2, which probably affects your doctor's recommendations. And the experts admit they don't fully understand the behavior of breast cancer either, so they follow the data.

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@pattier

DCIS, Stage 0, grade 2. Chose lumpectomy - had to have 3 to get clear margins. Now am looking at 20 radiation treatments after CT scan - 16 regular and 4 boosts - starting April 8th. I am also supposed to start anastrozole after last radiation appointment but I really don't want to. I've heard such bad things about it. My oncologist did just prescribe 30 days of it to see how I do instead of going for a 90 days prescription right off the bat. I guess I like that but I'm very nervous about taking it. Also - it's so confusing when people call DCIS non-cancer or pre-cancer and others call it cancer. If it isn't cancer then why do we get treated as if it were cancer? And if it IS cancer then why call it something else? We have the same fears.

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@pattier I too had DCIS but to simplify things I just call it cancer. Fact is, some DCIS recurs more often than true cancer that has been appropriately treated. And there is a 50% chance of a recurrence being invasive not just another DCIS. So the fear is there, and the need to get treatment.

I had grade 2 like yours. Depending on why it is scored a 2 makes it more concerning to me. I do not know the breakdown of my score. But if the miotic (rate of growth) is high, along with some solid type cancer cells (vs cribriform or papilloma) there might be a greater chance of it breaking out of the duct.

Pathology looks at whether the myoepithelial cells surround the lesion - if it does it’s good and indicates the cancer cells have not broken through the duct. Pathology also considers whether there is abnormal p53 immunohistochemical expression. If normal p53 is present then it is another indication that the DCIS is contained.

For some of us, removing the DCIS and treatment means we’re done. For others, there may be a recurrence. And although there are indicators, like p53 and the myoepithelial layer - they still can’t predict 100% accurately of who will have a recurrence. And that’s why I just call my DCIS cancer - because the potential of cancer is very real. And the difference between DCIS vs cancer takes more explanation than some friends want to hear.

I try to be very respectful and aware, though, when talking or posting about my experience. Because I haven’t faced the same risks and chemotherapy that others with invasive cancer have. I always hope that I express empathy and not make treatment sound easy, because I have not experienced some of the situations, treatment, risks, that others have.

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@cathd

Also . . . the cancer I had is >90% ER+ HER2 neg.

Was on HRT prior to cancer diagnosis last September and immediately stopped. After six months without HRT,
already I dislike the effects on the genitourinary tract, not to mention the upcoming emotional issues, insomnia, heart disease and bone loss. If I am not mistaken, the Doctor above says that the A.I. reduces recurrence by 3 to 5 %. with no effect on mortality rates at ten years. But he also reminds us that these drugs have saved more lives than any other treatment.

3 to 5% sounds insignificant - BUT - a year ago my chance of getting the original breast cancer was only 1.8% and I lost that bet! SO, 3 to 5% isn't bad until you are in that 3 to 5%.

Worth mentioning: my surgeon told me that women who do not have issues with aromatase inhibitors do not write in to message boards. 🙂 In addition, I have 2 friends who have had no side effects from the medications.

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Have been on the medication for stage 1a for 8 1/2 years. No isues. I do not want to go off the pill. I was 67 at the time. I do have osteoporosis, but I was headed that way before the pill. Oncologist wants me to take Zometa infusion. I am just nervous about my teeth even tho no dental problems. My teeth are old.

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@triciaot

@pattier I too had DCIS but to simplify things I just call it cancer. Fact is, some DCIS recurs more often than true cancer that has been appropriately treated. And there is a 50% chance of a recurrence being invasive not just another DCIS. So the fear is there, and the need to get treatment.

I had grade 2 like yours. Depending on why it is scored a 2 makes it more concerning to me. I do not know the breakdown of my score. But if the miotic (rate of growth) is high, along with some solid type cancer cells (vs cribriform or papilloma) there might be a greater chance of it breaking out of the duct.

Pathology looks at whether the myoepithelial cells surround the lesion - if it does it’s good and indicates the cancer cells have not broken through the duct. Pathology also considers whether there is abnormal p53 immunohistochemical expression. If normal p53 is present then it is another indication that the DCIS is contained.

For some of us, removing the DCIS and treatment means we’re done. For others, there may be a recurrence. And although there are indicators, like p53 and the myoepithelial layer - they still can’t predict 100% accurately of who will have a recurrence. And that’s why I just call my DCIS cancer - because the potential of cancer is very real. And the difference between DCIS vs cancer takes more explanation than some friends want to hear.

I try to be very respectful and aware, though, when talking or posting about my experience. Because I haven’t faced the same risks and chemotherapy that others with invasive cancer have. I always hope that I express empathy and not make treatment sound easy, because I have not experienced some of the situations, treatment, risks, that others have.

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Thank you so much for your very informative reply. I think I may have to look closer (or ask more questions) about my pathology report. Thankfully I did understand your explanation of how DCIS can differ.
I, too, try very hard to be empathic with people dealing with invasive cancers - my Mom, aunts, and cousin all included. To compare what they all went through (and are going through), I sometimes feel foolish for even talking about my experience. But the fear and and apprehension are still there, aren't they? Plus the impact on all of our lives. Thank you for your reply!

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@cathd

Hi Pattie,
I have thought about that as well. In the video I linked, the Doctor explains that DCIS and IDC treatment protocols are the same - I believe IDC is DCIS that has burst out of containment. I hope you can check out the video - it became my reference point for making decisions. There are a couple of good discussions about the risk/benefits of medications as well as radiation, etc. I think I have watched it three times now. I think you will find it interesting if you go to the link and start watching at 42:00 minutes - pertains to your situation. Said a prayer for you!

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Thank you for your reply. I'm sorry but I can't see the link you mentioned. Perhaps I'm not looking in the right place. The video sounds like something I'd like to see. Thank you for the prayers - same to you. 'A crap shoot' for sure.

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@pattier

Thank you for your reply. I'm sorry but I can't see the link you mentioned. Perhaps I'm not looking in the right place. The video sounds like something I'd like to see. Thank you for the prayers - same to you. 'A crap shoot' for sure.

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Hi!
Here is the link again
https://www.youtube.com/watch?v=IdKIF28C1xg

If you don't see it, do a search for "Peter Attia #278 Breast cancer: how to catch, treat and survive breast cancer". It's a YouTube, 2 hours and seventeen minutes long.

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@pattier

DCIS, Stage 0, grade 2. Chose lumpectomy - had to have 3 to get clear margins. Now am looking at 20 radiation treatments after CT scan - 16 regular and 4 boosts - starting April 8th. I am also supposed to start anastrozole after last radiation appointment but I really don't want to. I've heard such bad things about it. My oncologist did just prescribe 30 days of it to see how I do instead of going for a 90 days prescription right off the bat. I guess I like that but I'm very nervous about taking it. Also - it's so confusing when people call DCIS non-cancer or pre-cancer and others call it cancer. If it isn't cancer then why do we get treated as if it were cancer? And if it IS cancer then why call it something else? We have the same fears.

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I agree! Just had the same conversation tonight about why they call DCIS “pre cancer” when clearly we need to have it removed then go through treatment. My lumpectomy is scheduled for 4/19. I’m not nervous yet but I know I will be as it gets closer. It feels like such a relief after each step.. biopsy, MRI, ultrasound and second biopsy but then there’s always something else lurking in the future. Right now the plan is 4 weeks radiation then possibly 1 week boost. No hormone blockers because I’m Estrogen/progesterone negative. Which is another worry.

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@cathd

Hi!
Here is the link again
https://www.youtube.com/watch?v=IdKIF28C1xg

If you don't see it, do a search for "Peter Attia #278 Breast cancer: how to catch, treat and survive breast cancer". It's a YouTube, 2 hours and seventeen minutes long.

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This is an excellent video! Explained so much! Thank you for sharing!

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