DCIS and tests for decision making

crselby
crselby Member Posts: 441 Member
in Breast Cancer #1

Ladies,

6 years ago I had DCIS treated with a lumpectomy and interstitial multicatheter brachytherapy radiation after being told those treatments were as effective as a mastectomy in terms of mortality. I had to ask for the hormone receptor testing to be done, it was not standard.  I also asked for Her2 and Oncotype DX testing and was told those were not done on DCIS. (There were no studies to validate those tests and their results on DCIS, only on invasive.) Now, this past April, I was again diagnosed with DCIS, same breast, same area.  I was able to talk doctors at Cancer Treatment Centers of America, but not MDAnderson, into doing another lumpectomy if I promised to have whole breast irradiation.  So I did have the lumpectomy, which left me with a mess so the plastic surgeon and I planned for a breast reduction (and rearrangement of tissue) to be done at the same time.  I am still healing since the radiation 6 years ago seems to have affected the blood circulation in the entire breast. When no DCIS could be found in the surgical specimen pathology I was shocked.  There were clearly calcifications remaining after the biopsy and clip placement; I saw them with my own eyes on the post biopsy mammogram.  There can be several explanations: the pathologist sliced up the wrong area or sliced it too thickly to see them; the equipment was less sensitive than the mammography machine was; or my immune system had time to clear them away in the intervening 3 months.

 

I was feeling pretty positive after the surgery, although dealing with the drain, the incision that won't heal right, and a boob that is somewhat smaller than I expected that makes wearing a bra or clothes lopsided and awkward, was part of the process.  In that positive mindset, I began to think that maybe I could renig on my promise and refuse radiation and/or hormone therapy altogether. In researching "overtreatment for DCIS" I came across the fact that Oncotype DX is now done on DCIS.  What a difference 6 years makes.  The test is VERY expensive but will be covered by my insurance.  The test (on cancer cell genes) showed there was a very small chance that it would recur and that radiation would be of no value.  Wooooo hooooo!!!

 

There are all kinds of factors involved in all of this.  No one else would have exactly the same circumstances.  For example, if DCIS recurs, it has about a 50% chance of being invasive.  This did not happen in my case.  I believe this cancer was from cells that were too small to be seen as calcifications (dead tumor cells) and were just outside the margin. There were DCIS cells within the anterior margin tissue but not at the margin from the first lumpectomy 6 years ago.  Oddly, my surgeon did not suggest reexcision.  Never even mentioned the margins to me.  I found this out by reading my path report myself!  Because this recent DCIS was found anterior to the old lumpectomy cavity, I suspect the surgeon did not take enough tissue in the right place (she took PLENTY of tissue posteriorly!) and left behind some DCIS.  The 1.5 years of Tamoxifen that I took slowed it down as did, I hope, the diet and exercise changes I made over those 6 years. But my stress and worry levles in daily life remained the same, impairing my immune system.  ... Until the recurrence, when I made serious efforts to reduce both of those.   Ah, who knows, right?

 

So now I've heard of something called Adjuvent Online that helps determine if hormone therapy will be of benefit. I must look into that.

 

In fact, why aren't these kinds of things done, these tests that give us more information about our cancer, before decisions are made to cut, burn, and poison us? Every treatment has lifelong side effects.  What if some of your treatments were unnecessary?

 

~~Connie~~

Comments

  • Lydia1234
    Lydia1234 Member Posts: 8
    #2
    DCIS

    .

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #3
    Lydia1234 said:

    DCIS

    .

    Connie - we are thinking about you, and

    the decisions that you must make.  

    Any updates, have you decided ?   I opted for bilateral mastectomy with my DCIS back in 2009.

    Strength, Courage and HOPE for a Cure.

    Vicki Sam

     

  • LizLaLoca
    LizLaLoca Member Posts: 2
    #4
    DCIS and my worries and thoughts

    I have had problems with my left breast for years now. It all started with an infection, I believe was caused by me putting my Cell phone in my bra but doctors say no that does not cause infections, as a result of this I began leaking brownness fluid. I was told not to squeeze and was kept a close watch on. I had my mammas and even had an MRI and was told not to worry about it all test can back clear and no signs of cancer.  

    Years later (age 40) I became pregnant with my son who is 4 now. From the time I gave birth the leaking didn’t stop and I had gotten over three infections the last one causing me to fall to the bed with flu type symptoms and decided to go have the Duck removed. Now mind you my mother also in her 40’s had the same thing happen to her but she did not wait in removing it. Having known this I went ahead with the removal with a doctor I did not feel comfortable with and not going with my gut still did it with him. (What a nightmare)  January of this year I had the duct removed and when I went in for removal of my stiches he tells me my Path came back with “Cancer” and because of my age I should have a full MX then got on the phone, while I wept, with a fellow surgeon on the possibility of reconstruction.  Needless to say it was the worst day of my life! And I NEVER went back to him…

    After a few weeks of searching and researching I discover that DCIS is not cancer!

    I found another doctor that unlike that 1st doctor sent me to do many test. He listened to as to how I felt my history and respected my opinions. This was basically to not remove my breast!

    My BRCA1 or BRCA2 test came back negative to the genes. MRI was good.  I have not Family history of BC. I had no other signs of calcifications on the breast before surgery. But because of the pathology on my surgery and the calcifications showing around the scar tissue this doctor wanted to go in and remove the harden tissue and clear my margins. He subjected a Central Node Lumpectomy.

    Day of my second surgery March of this year, I felt more at ease. I had a good feeling and Thank God my feelings were right. My Pathology came back with No Cancer or DCIS. But I did not know I would lose my nipple and this left me scared. (I have come to terms with it now)

    Ok so all that being over with He wanted me to have radiation and Tamoxifen for 5 years. I did not want Radiation I tried to fight to not have it but to make him and my hubby happy I did the treatment.

    Today it is way over a month since radiation is over with and I was having issues getting the medication filled (not that I was trying hard to get them filled) I pleaded with the Oncologist to not give me the med but he is a doctor and because I was High Grade he wants me to take them.. I have not started taking them and DON’T want to. This is where I am today!!!  I have not told my surgeon nor my Oncologist but my radiation oncologist is aware and said he was going to Rat on me.. (Surprised)

    So for the last few days my breast has been sore and was getting worried but read that the tenderness is normal and Came Across Your Post!!!  And Thanks for sharing it is helping me just read I am not alone.

    Why did you only do 1.5 years of Tamoxifen?

    If you could change your treatment option would you?

     

    I am just trying to figure out if I am doing the right thing with not taking the medication. I say if Cancer is so come up I will handle it by MX.

     

    -Liz-

  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #5
    LizLaLoca said:

    DCIS and my worries and thoughts

    I have had problems with my left breast for years now. It all started with an infection, I believe was caused by me putting my Cell phone in my bra but doctors say no that does not cause infections, as a result of this I began leaking brownness fluid. I was told not to squeeze and was kept a close watch on. I had my mammas and even had an MRI and was told not to worry about it all test can back clear and no signs of cancer.  

    Years later (age 40) I became pregnant with my son who is 4 now. From the time I gave birth the leaking didn’t stop and I had gotten over three infections the last one causing me to fall to the bed with flu type symptoms and decided to go have the Duck removed. Now mind you my mother also in her 40’s had the same thing happen to her but she did not wait in removing it. Having known this I went ahead with the removal with a doctor I did not feel comfortable with and not going with my gut still did it with him. (What a nightmare)  January of this year I had the duct removed and when I went in for removal of my stiches he tells me my Path came back with “Cancer” and because of my age I should have a full MX then got on the phone, while I wept, with a fellow surgeon on the possibility of reconstruction.  Needless to say it was the worst day of my life! And I NEVER went back to him…

    After a few weeks of searching and researching I discover that DCIS is not cancer!

    I found another doctor that unlike that 1st doctor sent me to do many test. He listened to as to how I felt my history and respected my opinions. This was basically to not remove my breast!

    My BRCA1 or BRCA2 test came back negative to the genes. MRI was good.  I have not Family history of BC. I had no other signs of calcifications on the breast before surgery. But because of the pathology on my surgery and the calcifications showing around the scar tissue this doctor wanted to go in and remove the harden tissue and clear my margins. He subjected a Central Node Lumpectomy.

    Day of my second surgery March of this year, I felt more at ease. I had a good feeling and Thank God my feelings were right. My Pathology came back with No Cancer or DCIS. But I did not know I would lose my nipple and this left me scared. (I have come to terms with it now)

    Ok so all that being over with He wanted me to have radiation and Tamoxifen for 5 years. I did not want Radiation I tried to fight to not have it but to make him and my hubby happy I did the treatment.

    Today it is way over a month since radiation is over with and I was having issues getting the medication filled (not that I was trying hard to get them filled) I pleaded with the Oncologist to not give me the med but he is a doctor and because I was High Grade he wants me to take them.. I have not started taking them and DON’T want to. This is where I am today!!!  I have not told my surgeon nor my Oncologist but my radiation oncologist is aware and said he was going to Rat on me.. (Surprised)

    So for the last few days my breast has been sore and was getting worried but read that the tenderness is normal and Came Across Your Post!!!  And Thanks for sharing it is helping me just read I am not alone.

    Why did you only do 1.5 years of Tamoxifen?

    If you could change your treatment option would you?

     

    I am just trying to figure out if I am doing the right thing with not taking the medication. I say if Cancer is so come up I will handle it by MX.

     

    -Liz-

    Hi,
    I just wanted you to know

    Hi,

    I just wanted you to know that there are some doctors and oncologists out there that still consider DCIS a cancer. All my doctors considered my DCIS a cancer. There is a lot of controversy over this.

    "Ductal carcinoma in situ is a form of cancer in which cancer cells start to develop in the milk ducts of the breast (“in situ” means “in place”) but haven’t spread beyond the ducts. In some women, this condition progresses, and the cancer moves beyond the milk ducts to invade other tissues." (https://www.mskcc.org/cancer-care/types/breast/about-breast/types-breast).

    Just want to you to be aware that ther e are some that consider it a cancer and some that don't.

  • LizLaLoca
    LizLaLoca Member Posts: 2
    #6
    cinnamonsmile said:

    Hi,
    I just wanted you to know

    Hi,

    I just wanted you to know that there are some doctors and oncologists out there that still consider DCIS a cancer. All my doctors considered my DCIS a cancer. There is a lot of controversy over this.

    "Ductal carcinoma in situ is a form of cancer in which cancer cells start to develop in the milk ducts of the breast (“in situ” means “in place”) but haven’t spread beyond the ducts. In some women, this condition progresses, and the cancer moves beyond the milk ducts to invade other tissues." (https://www.mskcc.org/cancer-care/types/breast/about-breast/types-breast).

    Just want to you to be aware that ther e are some that consider it a cancer and some that don't.

    Thanks

    I am aware of this and that is why I am wondering if I am making the right decision here. I am going with my Gut feeling and at the same time i'm scared...Frown

  • Nightmareshope
    Nightmareshope Member Posts: 9
    #7
    LizLaLoca said:

    Thanks

    I am aware of this and that is why I am wondering if I am making the right decision here. I am going with my Gut feeling and at the same time i'm scared...Frown

    Hi Liz. Just wanted to tell you that I have high grade DCIS.. I was at first going to have a bilateral mastectomy. Then my brother who is an anesthesiologist told me to do the reexcision and ask the surgeon if I could take the hormone tamaflax without doing radiation if the margins came back clean. My surgeon said its not the standard of care as radiation always follows but a study of women 65 and older had just done re-excision and taken tamaflax and their survival rate was high. I am only 57 but he said I could do it. My medical oncologist will tell me the percentages when I talk with him after I get the pathology report back next week. I just had the second surgery yesterday, Oct. 1st. I am praying for clean margins or I am back to square one with two surgeries under my belt. I'm sorry they forced you to do radiation. From the time I heard cancer I said no radiation. Hope this helps some. Kathleen

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #8
    Nightmareshope said:

    Hi Liz. Just wanted to tell you that I have high grade DCIS.. I was at first going to have a bilateral mastectomy. Then my brother who is an anesthesiologist told me to do the reexcision and ask the surgeon if I could take the hormone tamaflax without doing radiation if the margins came back clean. My surgeon said its not the standard of care as radiation always follows but a study of women 65 and older had just done re-excision and taken tamaflax and their survival rate was high. I am only 57 but he said I could do it. My medical oncologist will tell me the percentages when I talk with him after I get the pathology report back next week. I just had the second surgery yesterday, Oct. 1st. I am praying for clean margins or I am back to square one with two surgeries under my belt. I'm sorry they forced you to do radiation. From the time I heard cancer I said no radiation. Hope this helps some. Kathleen

    Just checking on you Two ladies

    Decisions made?  Curious and hoping you are at peace with decisions- difficult to do - as we live in an age of instant information. - 

    pleae update us when possible ... 

    Vicki Sam 

  • ml51
    ml51 Member Posts: 1
    #9
    VickiSam said:

    Just checking on you Two ladies

    Decisions made?  Curious and hoping you are at peace with decisions- difficult to do - as we live in an age of instant information. - 

    pleae update us when possible ... 

    Vicki Sam 

    I'm new to all this

    Hi ladies,

    I'm so grateful for this discussion. Last month, went in for a 6-month follow-up due to calcifications found last spring. They were benign. More formed during the 6 months and this time some were DCIS. I had a biopsy-which became surgery all at once. Now I'm waiting on genetic testing. No BC in my family, I had mid-grade margins. Trying to decide whether or not radiation is in my future and whether or not to take tamoxifen. I would rather take the drug since I've been in peri-menopause for years, and the drug will put me into menopause. Any and all advice is welcome.

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