Please help me know where to start!!

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Katpip
Katpip Member Posts: 4
edited June 2015 in DCIS (Ductal Carcinoma In Situ)

I too have just been told I have non invasive DCIS, high grade with comedo necrosis and luminal in my right breast.

I'm still trying to learn as much about it as I can. I've spent hours and hours on the internet reading as much as I can.

I had just had to switch my Primary Care doctor because of change in insurance, right before I was diagnosed. I do not like him at all. His staff is very unprofessional and I have to nag them to get referrals and authorizations done. I would feel so much better if I had a doctor I was confident in. I'm thinking of changing to a different Primary Care that was recommended to me by a nurse. Do you think that would be a problem, since I've already started with this other doctor?

I need someone to guide me through making the best decision for me. Someone to help me coordinate all the surgeons, etc. It's all so very confusing and overwhelming and I don't want to do anything that is not ABSOLUTELY necessary!

I had my first appt. with the BS last week and she told me I needed a mastectomy because my breasts are small and the area is large. I feel like it's over treating....it seems almost insane to remove the whole breast! I understand that it will eliminate the cancer but I want a less radical way to treat it. It just seems to me that they so quickly rush to total removal of breast! She said it like she was telling me to have a wart removed. So "matter of fact". I was so shocked that I hardly asked any questions!

I don't want to go through anymore surgery than absolutely necessary. I want to have as little recovery time as possible.

I would really like to get another reading of the Pathologist's report for a second opinion. It is possible that the diagnosis could be incorrect, isn't it?

I have an appt. with another BS to get another opinion. I was reading Chocomousse's posts and she found a surgeon that agreed to do an LX where two others wanted to do a total mastectomy. I am hoping I can have the same experience.

I've never had any kind of surgery and I don't do well with pain. I want to deal with this as simply as I can. It seems that a total Mastectomy and reconstruction is a bit extreme. What should I do?? PLEASE....any help or advice on where to start would be great.

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  • Janet456
    Janet456 Member Posts: 507
    edited May 2015

    Sorry you find yourself here. Have you read Beesie's Guide to DCIS?

    Hopefully this should be a link, but if not it is pinned at the top of the DCIS section. It is very informative. x

    https://community.breastcancer.org/forum/68/topic/...


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  • Holeinone
    Holeinone Member Posts: 2,478
    edited May 2015

    Kat,

    Beesie is highly respected on this website as the go girl for info on DCIS.

    My surgeon & PCP both thought lumpectomy was the best option for me, tumor was small. I think if I had known how many nodes & invasion I had before surgery, I would of panicked & chosen a mastectomy.

    I have read of lots of struggles here on reconstruction. Lumpie is easy in comparison

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  • Sarah0915
    Sarah0915 Member Posts: 94
    edited May 2015

    I'm not sure if this Dr. is mentioned in Beesie's guide or not. But, you should definitely check out the work of Dr. Laura Esserman and read what she has to say about DCIS. Here is an intro in CNN http://www.cnn.com/2015/02/04/opinion/esserman-can...

    I have a friend who was diagnosed and told she had to have a mastectomy. She opted to only take Tamoxifen and on her last scan, after one year, there is no sign of cancer. I emailed Dr. Esserman, just to add another person to her statistics and her response was "wonderful, but I'm not surprised". I'm not suggesting what you should or shouldn't do but consider your options well. Good luck to you.

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited May 2015

    A second opinion is always on the top of my list when I hear of a new friend or family that has been diagnosed... it may be different.. it may not... but somehow that second opinion seems to help level the playing field...  Steady your hand so to speak...  Your slides are help by the facility for a few years but if you ask your bs to send them out to a different pathology group - perhaps one of the hospitals or facilities who specialize in breast cancer of all kind you will feel more resolve.  That was my feel when I asked my bs to send the slides off to Vanderbilt for a second opinion.  It cost me $350.00 to do however I challenged my insurance company and they did eventually reimburse me for the costs...  Good luck I remember how difficult your position is!!!  Oh and whenever possible make sure the second opinions are completely unconnected to the first bs or pathologists... Best, Deirdre

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  • april485
    april485 Member Posts: 3,257
    edited May 2015

    I agree with those who said to get a second opinion. The foremost expert on DCIS is Dr. Michael Lagios and he is in San Francisco I believe but he does allow you to send in all of your pathology etc.  You can google him for more information. Best of luck to you whatever ends up happening.

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited May 2015

    my stuff began with a routine mamo ordered at the time by my PCD.  However when DCIS was found she referred me to a BS who was the one to manage my treatment.  I had 3 lumpies till they got clear margins but my boobies are big so to be truthful, the boob does not look much different from the other one.

    I did not do a second opinion on surgery but did get 2nd opinions on the radiation and oncologist.  I ended up at one of the top hospitals in the NYC area so felt good about my choice.  I think Dr Lagos is used mostly by folks in areas not close to cancer centers but it certainly is an option

    good luck and chose the best team you can find

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  • angmom41
    angmom41 Member Posts: 27
    edited June 2015

    I am so sorry you are here and dealing with this diagnosis. It is overwhelming...it is a roller coaster...it leaves you spinning and not thinking clearly. So you are doing the right thing getting a second opinion from another breast surgeon. They might give you the same treatment recommendation, but it gives you time to talk about your treatment options and what lies ahead.

    I had a large area of DCIS, so my only option was MX as suggested by two breast surgeons. It was hard to swallow, but at some point the decisions started to lessen and you start to heal. It's hard, but try to remember that you will get through this!!

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