Why continued checks from the BS if it is DCIS?

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coffeelatte
coffeelatte Member Posts: 209
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I have been wondering about this since last week when I had a four-month follow-up appointment with my breast surgeon.  I was diagnosed with DCIS and had a double mastectomy in August. I had several follow-up visits in those first few months, which seem reasonable. But now I am on a scheduled re-check every four months.  If they take all the milk ducts out, and the cancer can not be outside the ducts if it is DCIS, then why does the breast surgeon want to see me every four months for follow-up?  Is it that I am ER and PR negative?  Is it because a new breast cancer can start in the remaining breast tissue (which I can not see)? Is it because the pathology report said DCIS but they are not 100% certain?  I am confused (and nervous) about the continued surveillance. Makes me worry that a recurrence is likely with DCIS.  My bra fitter said it was because it is all about the money... Geesh, that one hurt. I felt good until my recent appointment. The BS acts like they need to keep a close eye on things.  Is this normal?

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  • gtgirl
    gtgirl Member Posts: 129
    edited March 2014

    I can only speak for my Surgical Oncologist.  I don't have to see her until next September when I have my mammogram on my right breast.  If I have a problem, I am to call her.  It could just be your BS wants to keep an eye on you every four months?  I actually would be all over that, but I just listen to what I am told.  I have to say what your bra fitter stated could be true!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2014

    A post from the Mods a while back:

    Hi Cinnamon,

    We've heard back from our editorial team and our in house medical advisor, Dr. Brian Wojciechowski. Here's what he had to say:

    "The recommended follow-up schedule is the same for all women with DCIS or invasive cancer, regardless of what procedure was done: h and p (Edit: short for History and Physical Examination) every 3-6 mos for the first 3 years, every 6-12 for the next 2 and annually after 5 years. The only imaging studies recommended for routine use are annual mammograms for anyone with residual breasts. Women with mastectomies will not have mammograms but will still need a clinical exam. Routine lab work is actually NOT recommended. It is true that not all women with DCIS get radiation. Certainly not those who have had mastectomies or who have contraindications to radiation. Women who have had DCIS and only lumpectomy are supposed to get radiation. (Breast conserving therapy) It is not possible yet to identify women who are low enough risk to be spared radiation after lumpectomy alone in DCIS."

    Thanks for bringing this to our attention, and we'll be sure to update our site content soon!

    --The Mods

    The thread:

    http://community.breastcancer.org/forum/93/topic/7...

    I'll add that I had ovarian cancer that only has about a 5% recurrence rate after surgery but I still had two years of quarterly follow-ups and have another three years of semi-annual ones.

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  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited March 2014

    Hi ladies. I just thought I'd share my experience. I was diagnosed at 34 in 2007 with the dcis. I opted for a double mastectomy so I would not have to worry about this again. After my six month check up they told me to go live my life I was cured. I needed no more surveillance. In August 2013 I felt something in the same spot as the original breast cancer appeared. I went in to have it checked. The surgeon could not even feel it. I had to put her finger on it and press hard. , She thought it was nothing but I had a biopsy anyway. To my horror it turned out to be triple negative breast cancer. A mastectomy does not guarantee that you will be safe from a new breast cancer in the future. I am currently undergoing chemo. My last infusion is Monday. I will be doing six weeks of radiation afterwards.  I hope this never happens to any of you.  Please be vigilant about self exams. I wish I had radiation the first time this happened but that was not protocol. 

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited March 2014

    I only had a lumpectomy, but they told me (and I find it's true) that scar tissue continues to form for a year, and some people have issues with this, or other aspects of healing.  Your surgeon, like the surgeon who takes out a gall bladder or performs a caesarian, is required to continue to follow your healing until it's, well, healed, because he can identify, and address, subtle problems months before you, and put your mind to rest on all the stupid little questions that we all (mostly all, anyway) have.   While your surgeon is required to schedule followup visits at specific times, you, of course, have no obligation to show up, but if you're really disinclined to do so, I'd strongly suggest that you give him or her a call and ask why he would like to see you.  Whether you decide to go or not, I think you'll find it really is not about money.

    .

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  • coffeelatte
    coffeelatte Member Posts: 209
    edited March 2014

    Melissa, thank you for finding that post.  I did not realize there was an established protocol for patients with DCIS.  I feel better about the re-checks now as I thought maybe there was a micro invasion and the BS did not want to tell me.  I got a copy of my pathology report from my stereo-tactic biopsy, but I did not request one after the mastectomy.  I think I need to get a copy (deep breath) and take a look.  I really acted like a turtle with my head stuck in the sand for a few months after the mastectomies, which is so unlike me.  I think I was just on overload and could not handle one more thing at that time. DMX and lymphedema has been enough for the first go-around!

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  • coffeelatte
    coffeelatte Member Posts: 209
    edited March 2014

    Oh my Mikesgirl, you are living one of my biggest fears. Bless your heart. And the words: "go live your life, you are cured" was exactly what my breast surgeon said to me the day after surgery. He said it again a few weeks later when I had the staples removed, but he does not say it now. I constantly check my scar line and the area around the cancer site almost on a daily basis as a side note because I am trying to massage the thick scar and work on the lymphedema. Lymphedema forced me to get use to how my body feels now and to inspect for changes.  I am so much more thorough in feeling for lumps and bumps compared to the breast surgeon.  He barely runs his fingers down each side of my lymph area around the armpits and that is about it.  It takes some time to find the changes, so I can see why your surgeon could not feel it at first. I think many of the cancer patients on this site have said they were the first to find their reoccurrence. I guess I will keep going right now because I am too afraid to do anything different.  Cancer has made me such a nervous twit, I hate it!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2014

    Coffeelatte, I am a facts kind of girl. I love research, and medical stuff fascinates me. That being said, when I came home from my first hospitalization for suspected ovarian cancer and got on the computer and started to look things up I got so distressed that I literally started blacking out & barely made it a few steps to the bed to lie down.  I had to leave it alone for a while, so I completely understand.

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  • Louanne
    Louanne Member Posts: 101
    edited April 2014

    After reading some of the posts on this thread, why are they putting studies like this one out there? Look at the date. I don't have a full diagnoses yet, so far IDC 1cm. Doing some research since Friday.

    http://annals.org/data/Journals/AIM/929927/0000605...

    http://annals.org/article.aspx?articleID=1834145

    Only part of the study is available. 

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  • Jelson
    Jelson Member Posts: 1,535
    edited April 2014

    Here is the entire article Louanne ( I think?)  I am not sure what point you are making when you ask why are they putting studies like this one out there.

    http://annals.org/article.aspx?articleid=1832963

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  • Lilyluv
    Lilyluv Member Posts: 160
    edited April 2014

    Louanne, The article indicates that doctors don't know enough when it comes to DCIS.  There's a feeling in the medical field that there is a lot of overtreatment.  Every 3 mo. for a mammogram seems like overkill when you've had a mastectomy.  My doc said see ya in 6 mo. and after that it's back to a year again.  There's so much unknown with this condition.  Some doctors get over concerned about it and others are like, OK you're cured.  Leaves us patients in confusion.   And yes, there are questions of ethics when it comes to hospitals having to pay for equipment and make money.  A hospital is a business.  I worked in the medical equipment field and yes that does happen.  A doctor orders a piece of equipment and then must have the throughput to validate the expenditure.  That's just life when it comes to the world of medical institutions. Does that happen often?  I doubt it, but it does happen, especially when it comes to very expensive pieces of equipment like MRI's.

    I'm not worried about a recurrence.  What I worry most of all is the side effects of all the treatment down the road. LE, fibrous tissue causing pain, etc.   That's the reason for additional research.  There are so many unknowns out there.  There are questions that need to be researched and answered with regard to DCIS:   Did I really need surgery if this thing isn't life threatening or is likely not to become life threatening?  Was I overtreated by having radiation?  Why do some doctors do a mastectomy for a non life threatening "precancerous lesion"?  Are the side effects from the treatment we had worth it if they discover that it wasn't necessary to begin with?  They can't even decide if it's cancer or not.  A "lesion" is NOT the same as a malignancy.  For high grade DCIS it's a malignancy.   So is it a malignancy (cancer) or not?  We base our treatment on little proven theories. How do you determine treatment on something that so little is known about in terms of who will progress to invasive?  They don't know enough about DCIS is the bottom line.  We're all picking out treatments based on no proof that we even needed to go with the choices we made.   That's the part that scares me.  If 5 years down the line, they find that women are getting mastectomies and radiation for nothing, we have to live with those consequences!  So additional study is certainly warranted. 

    Also if they end up calling DCIS a "pre-cancerous lesion" (and merely a risk factor requiring surveillience), will insurance companies still pay for treatment if we are fearful and feel we need it? 

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