DCIS upcoming surgery in Wisconsin

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bluewillowskys
bluewillowskys Member Posts: 365
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I am recently diagnosed 4/7/11 with DCIS on my right breast after having my very first mammogram in March. I had a steroetactic biopsy on April 1st. I was diagnosed on April 7th and now I have a lumpectomy scheduled for May 5th. I was told I would have radiation after that for 3-5 weeks depending on the pathology. I am really scared about this surgery and possibly finding things are worse and they missed something on the biopsy/mammograms/ultrasound and that they will tell me I need a mastectomy. I am very fearful of the surgery itself. I am very fearful of how I will look afterwards. I am very fearful about going through radiation. I am very fearful of not doing radiation. I am fearful of having to take Tamoxifen. Oh and by the way, did I mention I am very fearful ?

There are no local support groups where I can talk to other women. I have my family and friends being supportive, but that only goes so far ,ya know? Its not the same as having a friend who has been through this and lived or is going through it right now. I am currently also separated from my partner of 13 years and not having her to rely on right now is especially painful. We still live together , but have been "separated" the past 6 months. I really need her back in my life for so many reasons , but right now especially with this cancer inside me I need her support. I am so worried that I will have to go throught this thing alone .

I have tried a few chatrooms for cancer patients and have been given the brush off and been told to suck it up because basically my cance is "non-cancer" in their minds and "no big deal".. But this IS a big deal ! No matter how small it may be in size its a BIG deal emotionally/mentally /physcially to deal with...just the same as anyone elses cancer is to them.

I really am hoping this forum will be more supportive then others I have tried...guess I will cross my fingers on it.

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  • Eloise
    Eloise Member Posts: 137
    edited April 2011

    Welcome, and I hope (and believe) you'll find support and helpful information here!



    Fear is an appropriate emotion for you to have right now. I think the best way to reduce and control fear so that it doesn't paralyze you is to gather as much information as you can.



    And you won't get any of the DCIS-isn't-real-cancer guff here. Having your toilet

    overflow is not as bad as having your house blown away by a tornado, but that doesn't make mopping up the poop any easier.



    Do you have the preliminary pathology report from your biopsy? What did your surgeon say about anesthesia options?



    DCIS is not an emergency; you can't ignore it, but if you're not comfortable with your treatment plan or you need more time to research options, you can usually delay things a few weeks. And with all of these decisions, you're in charge. There may be a "strongly recommended" or "standard of care" label attached to some of your treatment options, but they are all options.



    Good luck. You can do this.









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  • marie260
    marie260 Member Posts: 2
    edited April 2011

    Hi there.  I got on here because I was scared.  Have a mammogram next week and I always fall apart when I know this is going to happen or when I have to see the cancer doctor.  I have had cancer twice so far (one was cervical in 1994 so they took some stuff out down there and I was somewhat good (hotflashes, fear, depression, fear, fear, fear).  Then in April2010 they found two spots on the left breast, was misdiagnosed by the doctors who were supposed to do the biopsy so I had it much longer than I should have.  Ended up having a mastectomy.  Just thought I'd give you a little background to let you know I do know what you're going through.  I think fear is a bigger battle than the cancer.  That's why I'm up at 1:30 a.m. when everyone else is asleep.  If there is anything else you would like to know, I will answer you truthfully.

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  • bluewillowskys
    bluewillowskys Member Posts: 365
    edited April 2011

    I am having a lumpectomy which i am told will be done by having some sort of spinal block and a concious sedation type anesthesia. I am very claustropboic and having oxygen/anesthesia masks on my face terrify me. I am also afraid that the block wont work and i will feel pain or be more awake during the surgery.

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  • SJW1
    SJW1 Member Posts: 244
    edited April 2011

    Bluewillowskys,

    When I was diagnosed with DCIS in 2007, I was very fearful too...of everything. What you are going through IS a big deal. It is so ok to be scared.  

    Since DCIS is non-invasive cancer, please know that it can NOT get out of the milk duct into your breast and can not metastasize into other parts of your body. Also you will not need chemo.

    From your diagnosis info, it sounds like you have a realtively small area of DCIS of non-high grade DCIS. If your surgeon can get good margins, it is even possible that you might not need radiation or tamoxifen. I didn't need either.

    When I had surgery, they did not put a mask over my face. They just used an IV to knock me out. Even though I needed a large chunk of breast tissue removed, I only have a small dent to show for it. It looks fine.

    I hope this will help alleviate some of your fears.

    However, if you need someone to talk to or have more question, please feel free to send me a PM. 

    Hugs,

    Sandie

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  • bluewillowskys
    bluewillowskys Member Posts: 365
    edited April 2011

    yes what you said does help my fears. I dont WANT to do radiation or tamoxifen , however I want the little beasties dead and gone and so may go through with it. I need to feel like I am DOING SOMETHING to rid myself of this and to increase my chances of not having a relapse. It was my understanding that DCIS turns into IDC...that just dont yet know the why,when  or the how it does it yet. They cant predict which patients DCIS will turn into IDC either hence the aggressive approach to get rid of it as early as possible. I have read of women that had DCIS who chose to have mastectomies and double mastectomies despite not knowing if theirs would turn invasive....which to me seems VERY drastic. I want to have the lumpectomy and give my body a chance to keep it gone with rads and tamox. if at all possible. If I have a recurrence then I would likely have no choice but to have a mastectomy since I would not be able to have rads again on that same breast and also cuz I deeply do NOT want to go through chemo.

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2011

    bluewillowskys, you'll definitely find support here. As well as the first-hand insights from other members, there is also information about DCIS here on Breastcancer.org.

    Judith and the BCO team

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited April 2011

    Have you discussed having an MRI before surgery?   It's the best way to make sure there's nothing else lurking in your breasts, but your claustrophobia might be a problem.  I think it's worth talking to your surgeon about, even if it means putting off the surgery for a week or so.  There's no medical reason to rush into surgery.

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  • bluewillowskys
    bluewillowskys Member Posts: 365
    edited April 2011

    when i met my dr. the first time she said she might have me do an MRI , but she wanted to confer with my radiologist first. They decided that they felt an MRI wasnt necessary. Which frankly at the time I was quite relieved about. I really didnt think i could handle it. I have had MRIs in the past for lower back disc problems and I totally freaked out. I am a little concerned about the possibility of missing something, but the UW Madison hospital seemed very thorough with my diagnostic mammo, ultrasound and the biopsy too. As far as not rushing into surgery, I have  feared it turning invasive while waiting around for surgery this past month. ANd though I am definitely NOT looking forward to surgery, I will probably be very relieved once its here and then over.

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  • txkari
    txkari Member Posts: 6
    edited April 2011

    Hi --

    I was diagnosed with DCIS on March 4, so I'm only a  month ahead of you on this journey. This is also my first time on this Forum. I'll be posting about my fears and concerns in a separate note, but I find helping others always helps me, so I'm starting here with you.

    My DCIS is quite large 15 cm in one direction, so I've been poked and proded a lot. Since the diagnostic mamogram, I have had two needle biopsies, one MRI biopsy and two partial mastectomies. Because of the size of the affected area and the inability to get clear margins, I will be under going a full mastectomy on the left side in a few weeks.

    Not counting the stress and trauma of dealing with having cancer, I can tell you that the two partial mastectomies (which would have been lumpectomies if the area was smaller) really weren't that bad physically. The pain was very manageable, especially the first time.

    I've had a lot of fearful moments in the last few weeks, so what you are feeling is very normal. But don't spend too much time thinking about the "what ifs". That's what will make you sick. My worst weekend was in between the time I was told I was told the Dr wanted to review my BRC test results with me and the appointment to do so. I was convinced I had the gene mutation, and spent the weekend being eaten up by what that meant. As it turned out, my results were negative, but I was so convinced they were going to be positive, I asked if she was sure. From that I learned that I really need to try to tackle one day at a time.

    I hope that helps a little. Good luck!

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  • Amyrich
    Amyrich Member Posts: 43
    edited April 2011

    I was in the same exact boat. I had the same diagnosis April 4th. Yes you are right that it can invade the breast. After many heart to heart talks with my husband,doctors,people wh have gone thru this, I chose the double mastectomy. I am 45. The fear of the cancer returning was huge and I am such a worry wart about everything, i would worry myself sick every year wondering if it came back. I do not have a lump. Strictly found thru a mammogram. They cant tell you how long it takes to break thru the duct, but I felt like it was a ticking time bomb!I googled so much about every option. 17days after finding out, I had a double mastectomy. I am 9 days into recovery and havent felt this much relief in several months. My surgeon said the path reports showed it was still confined to the duct and 5 lymph nodes were tested and are clear, so i don't have to have chemo or radiation. My cancer cells were considered "high grade". Which means they were more aggressive. So far, the recovery isn't too bad. My muscles are sore in my chest and rib cage, because of the expanders my plastic surgeon put in to prepare for implants. I have 4 drainage tubes. Starting next Thursday, I will get 2 out and begin saline injections, once a week. He was able to put 500ccs in at time of surgery, so it looks like I am a small A cup. If all goes well, I will have implants by 5 or 6 weeks. It's a very hard decision on which way to go. Since this is so new also to me, I want to help women as much as I can, and also helps me reading others journeys. All of this started with a mammo march 2nd, spent the month of march ultra sounds and needle biopsies. April was dr visits and lots of research and lots and lots of prayer. When others reach out, take it. It helps so much! Good luck and try not to be fearful. Positive attitude is huge. Once I realized God gave me this and I had to deal with it, I jet went with my heart.

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  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited April 2011

    Bluewillowskys

    Im sorry you have to be here and it is so normal to be scared but the good news is you cancer has been caught very early on.  Not to scare you but dont let time pass you by because DCIS  can break through the milk duct but we dont know when or how long it takes.  My DCIS did break through and that painted a different picture for me. We didnt find out that I had a small invasion until after my lumpectomy and I got my pathology report.  Wishing you the best and if it means anything the lumpectomy was very easy.  Prayers and good wishes for you.

    hugs to ya!

    AJ

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  • bluewillowskys
    bluewillowskys Member Posts: 365
    edited May 2011
    thanks for sharing your stories and positivity ladies. I found out this monring my surgery will be May4th not the 5th...this is the 2nd time the date has been switched. Makes me question the staffs ability when they cant even schedule it correctly.... Frown
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