Just diagnosed with extensive DCIS

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  • KAR
    KAR Member Posts: 225
    edited September 2009
    Day-Don't beat yourself up.  I know what your going through, my gyn dr told me to get mammo last year and I didn't, just didn't think it was necessary.  I too had very dense breast tissue and your right this could have obscured anything from showing up on mammo anyway.  I remember reading somewhere that dcis is very slow growing and that when you find it its usually been there 5-8 years, wow!  Also, remember that dcis can run up and down the entire duct so that can be a large area.  Just look ahead and do what you need to do to get well.  This is a frustrating time but you can do this.    If you want to read more info on dcis and invasion Beesies posts on this forum are very informative-she knows her stuff.  Try not to worrry---easier said than doneWinkGood luck
  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    I'm seeing the surgeon (who is oncologist too) on the 20th, the day before the surgery. That is also the day I see the PS and do the pre-op. I know there's nothing really to be found out until they do the pathology report after the mastectomy. And even if it comes up that there's nothing to worry about in the left breast - I will not regret the decision to have bi-lateral one single bit. I don't want to go through this again.

    Thank you so much for all your support, KAR, and everybody else. I am sorry for being a whiner from time to time. I try being strong but from time to time I fall in the pity pot.

  • KAR
    KAR Member Posts: 225
    edited September 2009

    Day-  We have all been there.....it does get better (eventually) I sware.  And you are soooo not a whiner, this situation stinks no way around it!  What hospital are you going to?, I had my first surg at Mercy in OKC, then moved to TX  in June and had  Bi MX.. what a move!  I have had quite a year.  Oh and by the way I sure don't regret bilateral, I'm such a worrier so it was the right decision for me. Take it easy.  Please keep us posted.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    I'll have the surgery at Presbyterian - both the surgical oncologist and the PS are OU Medical - OU Physicians, the oncologist is a Professor with the OU and the PS is an Assistant Professor.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    Ok, I just freaked out last night. I have 8 days til surgery. When we went to bed, I somehow moved my arm above my head, and I had this shooting pain in my breast, it felt like coming from the stereotactic biopsy site (from inside). It was quite a sharp pain, like something was caught in a wire there and wouldn't stretch enough. We did have some bad weather here in Oklahoma lately, rainy and yucky, I know surgery sites can be sensitive to weather for years, but is this normal? Now I'm freaking out that since the biopsy the cancer has grown. Did anyone have pain like this?

  • sweatyspice
    sweatyspice Member Posts: 922
    edited October 2009

    In my non-medically trained opinion, it's probably nerves regenerating at the biopsy site, and normal. 

    I had an open excisional biopsy in 1993 (benign fibroadenoma) and had shooting pains for a very long time, maybe years, afterwards.  And yes, it did seem to be influenced by the weather.  Now that I've recently had two core needle biopsies, I also have shooting pains from time to time, but not as bad as from the '93 surgery.

    I think it's much more likely to be nerve regeneration than cancer growth.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    Thank you, sweatyspice. I know they took quite a bit of tissue there, 4 samples with a 8 gauge needle so there must be quite a bit of healing to do.

  • KAR
    KAR Member Posts: 225
    edited October 2009

    Day, Just wishing you luck with your upcoming surgery.  Please post and let us know how your doing or if you have any questions. Smile  Yep that pain sounds like regeneration of nerves from what you wrote, its horrible isnt it?

    Hugs

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    Yes, KAR, it felt like there was a hook of some sort inside my breast with wires pulling all over and not letting it move with the arm - hard to explain.

    I am not sure if I will be able to post from the hospital - my SO is reluctant to the idea of me having the laptop with me, once for me handling it and hurting myself and two for it not to "disappear"but as soon as I get home I'll post for sure. They have gotten me certified for 5 days of hospital stay - not sure if that is the norm and that is how long I will be in there (sounds awful). The closest the day gets the more anxiety I get. My regular family physician gave me some Valium to cope. I'm not a Valium person but I took a couple in the last week.

  • KAR
    KAR Member Posts: 225
    edited October 2009

    Day, I was in the hospital 5 days too, I don't know if its normal though.  Take your Valium lady, your going through the ringer and if it makes you feel any better its so worth it.   I was given a script for Xanax after my diagnosis and it really helped at the time.   I don't need to take any now, thankfully.   Sending luck and healing quick vibes your way.  Oh yes post when your able, is your surgery next wed? (l forget)  Have you found the forum that lists all the things you need for surgery or when you go home from hospital? the spin toothbrush was the greatest, very hard to brush hair and teeth when you get bilateral.  Wink

    Hugs 

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    Ok, ladies.... today's the day.

    I was yesterday in the pre-op almost all day long. The surgery is supposed to start at 8:30 am CST, I have to be there at 7:30 to get the shot for the SNB. It is supposed to last 6 hours. I will have a double simple mastectomy, with right SNB (breast with the DCIS) and immediate reconstruction with lattissimus dorsi flaps.

    After the talk with the PS yesterday, he explained to me that working only with the skin spared and keeping the nipple on the left breast and the areolas on both would imply many "re-touching" surgeries and expanders, making the whole reconstruction last almost one year, and possible not be able to get to my regular full C -small D cup, and on top of that, that he feeling would be gone anyway. While if he goes with the lattissimus dorsi it will take one more week of recovery but way less "touch-ups" and he would be able to put in the implant today, the high profile full C. They said that the 5 days hospital stay they asked for certification is "just in case" but normally I shouldn't be in mor ethan 2 days.

    Am I nervous? Very. Super nervous.I woke up almost half an hour before the time I was supposed to. No coffee (of course) no nothing. I hope they give you a Valium while you're waiting.

    Wish me luck, ladies, and good friends. Hope to be able to come tell you everything soon.

    Ok, I'm terrified. Can I panic now?

    Hugs all

    Day

  • sweatyspice
    sweatyspice Member Posts: 922
    edited October 2009

    Good luck Day!!!!!!

    CoolBreeze is having surgery today, too - you're not alone.  I'll be thinking of you both!

    *hugs*

    (edited to fix annoying typo)

  • KAR
    KAR Member Posts: 225
    edited October 2009

    Day, thinking about you and sending you healing vibes and hugs

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    Ok I have the laptop. Can barely type, though (IV connecting in both hands. I had bilateral latissimus dorsi, implants put direcrtly - please forgive the typo lol. I am a littl dizy from the Percocet. The surgery laste 10 hours, they managed to preserve th the areola and the nipple on the left breast, and partiaally the areola on the right - PS reconstructed the right nipple from it.

    I'm very swollen under my arms, even my hands are swollen (not that bad anymore) but I had a great lunch and I'm on normal diet, with no restriction. I wasn't nauseous at all, just dizzy. Of course will will kno the final pathology report only about 2 weeks from now. What the oncologysurgeon told me,is that everyhing looked non=invasive to him, including he SNB,

    Loveall a nd big hugs!

  • KAR
    KAR Member Posts: 225
    edited October 2009

    Day, Im so glad your on this side of your surgery.  You will be sore but every day you will heal a bit more.  You surgery sounds like a great success your so lucky to have nipples yeah!  I call my poor breasts Barbie boobies cause they look funny w/out nipples, but I'll get new ones in a couple of months.   So you have your permanent implants and skipped the tissue expansion?  I was swollen for a while after my mx but I did have some bleeding complications and had to go back to surgery on the second day.  The drains might seen difficult at first but you can do it.  I had home health for a couple of weeks after and that really helped.  Healing vibes comming your way & good luck

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    Yes, that is why my PS wanted the latisimus dorsi, so he doesn't have to go with the expanders and have more surgeries. He said if he goes like this, he will be able to put my full C in at once.

    I am swollen, esp in the underarm and esp in the right one where they took out the SNB. Swollen and bruised. VERY bruised, but the swelling and the bruising already started going down. Even my eyes were swollen yesterday evening! only a little bit of swelling left now on the right eye.

    Ok, need to rest some. Hugs all.

  • klml4
    klml4 Member Posts: 60
    edited October 2009

    I just talked to a ps today.  I left the office saying I would go with tissue expanders, but as I have been thinking about it, I want the latissimus with implants.  I actually just finished writing him an email that I have changed my mind and want to switch procedures.  I do not want to wake up with little tiny breasts.  he said that he would be conservative with the tissue expander.  I am 37, I weat a D, I do not want to wake up as an A and have to go in for fills every 2 weeks!  I am going to do this instead and I will also be going for C.  I am glad that everything went well for you!!  I hope you heal up quickly

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    kiml4, glad you reconsidered what you need to be done.

    I can think more clearly now - I was very dizzy and confused before, I guess with the anesthesia and pain-killers and everything, so here's a more detailed story.

    My surgery lated 10 hours. That made me be VERY swollen after the surgery, and I don't mean just the breasts, but hands, feet and even eyes. They werent' able to put on me the surgical bra for about 15 hours after surgery, I was so swollen.

    The pain was pretty tolerable. I do have a tightness sensation around the chest, that doesn't enable me to breathe very very deep - but I was told that with the incisions on the back, as well as wearing this very tight surgery bra it is considered normal.

    I have two drains only, the thing that worries me is that I had quite a bit of "clots"on the drains, I need to check them almost hourly. My right underarms is more swollen than the left (right had the SNB done). But my legs are still swollen. I had the "auto-massager" on for all the time I was in the hospital. And at home, my BF and BFF are massaging my legs. I'm trying to walk as much as possible to avoid the formation of clots and to help with the swelling. 

    The swelling started to go down, on the left arm I can hold my arm along my body. The right underarm is almost there.

    I did bruise quite a lot, but everybody told me that it's ok and normal. And I think I'll go for a laxative today, I am taking a stool softener but I didn't go "no.2" since Tuesday morning. So I feel like I'm pregnant.

    It is very hard to feel so helpless, honestly. Even if they say I have a goode range of motion, like someone two weeks after a breast enhancement. It still is. And going to the bathroom with all the tubes and things still attached to me.

    The surgeon said during the pre-op that the second pathology they have requested from my stereo-tactic biopsy showed also a small amount of LCIS. He also said that by what he had seen during the surgery,  he doesnt' think there is any invasive component, but of course it won't be known until the final pathology report comes.

    I had a very hard time in the first night in the hospital with the night shift nurses. Imagine that when they got me up from the ICU to my room they wanted to "roll me over" in bed? And one of them actually was trying to push me with her hand on one of the incisions I had in the back?

    Anyway, the hospital is over now. They released me home yesterday. I was very tired by the time we got home, and even got a little bit of fever (100F) but it subsided very fast once I got settled in my recliner. I am going to lay back down now. I'll post updates. Maybe I whould start a thread on the "surgery before and after" board?

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    Well, I went today for my post-op appointment with the oncology surgeon. The pathology was back, and it wasn't nice. It seems that a few months ago, in several areas of my right breast, all kinds of things have tried to start. I had 4 (FOUR!) types of cancer in my right breast. The DCIS, then infiltrating lobular carcinoma, infiltrating cribriform carcinoma, and LCIS. The SNB showed 1 lymph node affected out of 3 - well not really affected, the cancer cells were in the lymph sinus not in the node per se. So, in about 3 weeks (to give time to the reconstructed breasts to heal) i will start chemo. In about a couple months, the oncology surgeon wants to go back in and remove more lymph nodes, and depending on the result then, I might or might not have radiation too.

    Yea. Not a very good day for me. Sigh.

  • Jelson
    Jelson Member Posts: 1,535
    edited November 2009

    Dear Day, I have been following your saga and your decision-making process. After reading your post today, my reaction was how did this happen all of a sudden, so I re-read your posts and note that you provided us with warning signs (Sept 3?), that your situation might be more complex than many we see here on the DCIS board. I googled infiltrating lobular carcinoma and found this webpage:http://www.healthcentral.com/breast-cancer/types-36007-5.html  from what I can understand, The lobular carcinoma is difficult to detect, but perhaps because it was mixed up with the DCIS, you were able to feel something and took the initiative to go to the doctor. And although you didn't know you had the lobular carcinoma at the time you made the decision to have a bilateral, it turns out that that type of cancer is a little more likely to show up in the other breast. I am so sorry that you got this bad news today, but I am so glad that this other pathology was discovered now ie NOT MISSED. You have been through alot in just a few months. Take care andGood luck and hugs to you.

    Julie E

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    Thank you so much, Julie. Yes, it has kind of happened all of a sudden, like my oncology surgeon said "like prairie fires starting in various locations all at once". It is a shock, and I am still reeling from it. I'm still in pain a little from the reconstruction (LD flap is not easy, I can tell you that) and now I'm looking forward to chemo, losing my hair, having another lymph node removal, and maybe radiation, and not knowing what the future will bring. Guess I'll just pop in a Valium and lay down, maybe by the time my BF comes home I'll be more composed.

  • KAR
    KAR Member Posts: 225
    edited November 2009

    Day: Im so sorry, I had been thinking about you and thought you must be doing ok cause I hadn't seen you post in a while.   I know you must be feeling down right now but please if you need vent or anything Im here.   I hope your chemo is uneventful and goes by quickly.   You can do this, I can tell you are a wonderful brave women and thank God you found it when you did.  PM me later when your up to it.

    HUGs

  • younggrandmaof2
    younggrandmaof2 Member Posts: 55
    edited November 2009

    Frywoman,

    I have not been diagnosed but you situation sounds so much like mine it is not funny.  I have an appointment with the BS on the 14th.  They keep telling me I have "lumpy, bumpy" breasts but the last time she mentioned having an MRI.  They seem to feel the lumps but usually cannot see anything.  I am over 10 years from having a biopsy done where I just found out the dx was ADH...the surgeon at that time just said if you happen to feel anything like this again get right back in.  I know there have been so advances since the dx but am so fearful since the BS I'm seeing now has never seen this path report (she will this time) that this has been growing all this time.

    Stay well and thanks for the information.

  • Pepperhargrove
    Pepperhargrove Member Posts: 20
    edited November 2009

    I am recovering from bi lat mx for DCIS with extensive microcalcifications. I used a surgical oncologist/reconstructive plastic surgeon for my treatment. I had the lat flap since I did not have a lot of body fat. I am healing well. Good luck and keep smiling.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    My dear friends,

    I am moving from this forum to the "Stage I and II" one - as right now I didn't only have DCIS and I'm a *sigh* T2b N1a MX.

    Thank you all for all the support, you have no idea how much it helped me.

    Hugs all

  • Jelson
    Jelson Member Posts: 1,535
    edited November 2009

    Day - There were some gripes about the proliferation of new forums, but hey, I am glad that the new Stage I and II - not specific to type of BC -  was created just in time for you. 

    Hugs and I hope your treatments go well without fuss or pain. 

    Julie E

    you don't have a rabbit for a pet do you? several on the Stage I and II thread do!

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013

    Lol no, I have a Whippet and a Greyhound mix.

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