2nd opinion and a few other questions.

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Mckaylaleigh
Mckaylaleigh Member Posts: 90
edited January 2016 in DCIS (Ductal Carcinoma In Situ)

Hi all. We are a military family and my DCIS was found at a military facility. So far I have only seen the general surgeon but I am wanting a second opinion off base.  I am confused who to make my 2nd opinion appt with, should it be a general surgeon like I already saw, or should it be a RO or should I see a specialist, not just a general surgeon? I am trying to find network providers in my area but I need to know who exactly to see. Also, is it normal for a general surgeon to care for a patient with DCIS? Who are all the doctors you see/saw?  I am concerned about the level of care on base. In fact, the first thing the surgeon said when he walked in the room was "good news, you don't have cancer!" So, my immediate thought was my biopsy was benign, WRONG!  Is it wrong for me to be annoyed that he said that? He was also very nonchalant about things, like a 7cm DCIS wasn't a big deal and we could just go in and take it out, easy peasy. He did say I could opt for a mastectomy, but said in not so many words that that would be silly barring this diagnosis. He even called my 7cm a small area.  Hello, that is 2.75 inches, I don't consider that small. Even my Radiologist said it was a very large size, the whole inner side of my right breast. Another thing that concerns me, I have to see my PCM (tomorrow at 10) to get a referral to get a 2nd opinion. Referrals often take 5-7 days and THEN I have to schedule the appt and I don't know how long that will take for me to get in. I am also waiting on a referral put in by the surgeon I saw for genetic testing (grandmother and grandmothers sister had BC) and I know that can take weeks to get in to, and then how long for the results??? I have high grade 7cm with cribiform and comedo and I am worried about things taking too long and things worsening.  Is this an irrational fear?  I guess I just have this feeling in the back of my mind that it has already progressed to invasive. This was my first mammogram I had in 7 years so no way of knowing how long I have had this DCIS or how fast/slow it grew. I am in a ittle bit of panic mode trying to learn and figure everything out and I feel like I am on my own. I don't have anyone coordinating things or my next step with me. Even the surgeon I saw told me to just give them a call when I figure out what I want to do, so I guess between now and then I am just on my own to run with things?  Whew, that was kind a of a venting session, but what I am feeling at the moment. Thanks for any and all help. 

To add, should I have had an MRI? My radiology report said "breast parenchyma is extremely dense fibrograndular tissue which may limit the sensitivity of mammogram". I asked a friend who is a mammographer why I didn't have an MRI and she said because I don't have dense breast but I have always been told I do and that statement in my radiology report seems to back that up???


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  • Scwilly
    Scwilly Member Posts: 489
    edited January 2016

    Makaylaleigh

    These early days of diagnosis are so scary and none of your reactions or fears are wrong. There is no right or wrong way to experience this just yours.

    I remember being diagnosed with stage 3b in Nov 2013, and just wanted to rush to treatment right away. But but my oncologist appointment was made a scary 10 days later. My Dr (the surgeon who did the biopsy) said that they would keep me busy with scans etc. which they did and that it was ok for things to take a week or two. I was also dx with DCIS in my right side in Feb 2014, and then had my DIEP surgery (I have previously had a left mastectomy) in the first week of April. My Dr said he wouldn't want to wait until the end of the summer but that there was no need to panic.

    Of course you are worried as you have been given a diagnosis that is so frightening. Every one reports that these early weeks feel scary and I agree. I do remember wondering how fast things were progressing and anytime between my treatments was time I didn't want to wait. But you do have time to decide exactly what you want to do. Go for that second opinion if this is what you want to do, so you can be sure you have the right information to make your decision. Try to stay off Dr Google as there are lots sites with duff information out there. This site is such a great source of information - both for the factual and for the emotional and practical experiences, advice and support from its members.

    Best wishes

    Sarah


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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Hi Mckaylaleigh:

    It is a good idea to obtain a second opinion at an independent institution. It is preferable to be treated by a specialist, in particular a Breast Surgeon who specializes in the treatment of patients with breast cancer as essentially all of their practice.

    Here is some information about second opinions from this site. There are a couple of sections (see list at upper left), so be sure to review them all.

    http://www.breastcancer.org/treatment/second_opini...

    It would be best to look for a center of excellence, with a comprehensive breast cancer center. For example, if you are reasonably near an NCI-designated cancer center, that is a great option. You may need to travel a bit farther, but it is worthwhile to tap into that expertise.

    http://www.cancer.gov/research/nci-role/cancer-cen...

    Others have recommended NCCN-member institutions:

    http://www.nccn.org/members/network.aspx

    If interested, confirm insurance coverage of a second opinion, and be sure to confirm the institution/doctors are in network. Contact them to ask about their process and how to go about collecting/sending any materials they may need to review (e.g., actual pathology slides sent overnight, copies of imaging, written reports, etc.) They will help you.

    I also had not had a mammogram for a number of years either. The DCIS may have been in there quite a while, but keep in mind that the biological changes that permit it to be screen-detectable may take additional time, so it may not have been visible the whole time it was there. Anyway, here is a quote from an excellent book by a breast surgeon, Carolyn M. Kaelin ("Living Through Breast Cancer"):

    "Obtaining a second or even a third opinion from different breast specialists can be very important. Don't be too shy or feel too rushed to do so. This is common practice and no insult. If a doctor rushes you—perhaps by saying he or she can fit you into the surgery schedule very quickly—it may be wiser to continue your search for advice rather than giving in to fear or pressure. The cancerous cells in your breast have been there for several years, perhaps even a decade. Usually, it is safe and sensible to take a few weeks to thoroughly evaluate these very important decisions."

    I agree that your report indicates that you have dense breasts. "Extremely dense" is the highest category of density. As part of the second opinion, you can inquire whether an MRI would be helpful for surgical planning and in view of your density.

    I was initially diagnosed with extensive DCIS (~5 cm) and sought a second opinion. It led to additional imaging (a further diagnostic mammogram), biopsy and change in my treatment plan.

    BarredOwl

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  • Mckaylaleigh
    Mckaylaleigh Member Posts: 90
    edited January 2016

    Thank you so much ladies, your posts were very helpful! Today was a great day of learning and although I have not made any decisions about anything, I feel more informed and that will eventually help me make the right decisions for me.


    Kelly

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