DCIS newbie

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stewbie2
stewbie2 Member Posts: 70
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hello ladies,

I am a freshly diagnosed DCIS-er. 'Freshly' as in, I just found out on 11/13. A bit of a background:

I have a relatively large lump in the area between my right breast and my armpit. It's been there for appx 6 weeks. The week before Halloween, I made it over to my gyn/ob, and she scheduled me for a mammogram. I went in for my mam on 10/30 so they could check out the rt side. They did the mammogram (both sides), then put me in the waiting room while they quickly reviewed the slides. They then called me back to 're-do' the left side and get some more detailed views. I said, "Oh, do you mean the right side? That's the 'problem' side." The tech said, "Well...the right side looks fine--but you have some areas on the left." Turns out, i had 2 areas of microcalcs.

On 11/1, I went in for a core-needle biopsy for the two areas (in different quadrants). What SHOULD have been an easy procedure, turned into a pretty...well...MESSY one. After they pulled the biopsy needle out (or whatever that machine-thingy is that does the biopsy), I literally SHOT blood out, and kept bleeding. Puddle of blood on the floor, all over the nurse, all down my arm, etc. No fun. It didn't hurt, by any means, and thankfully, I had some great nurses, who were making me laugh. It took over an hour and a half to get the bleeding to stop, and during the bleeding, I lost the titanium (?) marker that was in my breast. I ended up with a hematoma the size of an orange, and because of that, they couldn't do the second biopsy.

On 11/13, the doctor called to tell me that the biopsy was DCIS, and that the margins weren't clean. They still have to biopsy the second area--tomorrow, 11/14. The doctor said that she's pretty sure the 2nd area will come back as DCIS, as well (how would she know this?? No idea.) My husband and I are meeting with the oncologist on the 21st to discuss course of action. I feel like they're moving relatively quickly with this, which makes me happy. I've had malignant melanoma 3x and a crap-ton of precancerous issues with my cervix--I'm pretty sure my chart is marked with exclamation points. :)

Btw, I just turned 38 in Sept.

Pretty sure i'll be chit-chatting up a storm over here as soon as we talk to the surgeon next week. I just wonder what's in the cards for me? From 99% of the posts i've seen, it looks like my opts will be lumpectomy and radiation/or masectomy. To be honest, I am so freakin' sick of cancer (in all forms). I've been dealing with it on and off since i was 28. Man, you would think that there would be some kind of wonder-drug out there by now...

Take care all!

Steph

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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2012

    Steph, welcome!  I'm sorry though that you've had to find us. 

    I don't know if you've read a post that I put together with some basic info about DCIS. If you haven't, it might be a good place to start:  A layperson's guide to DCIS

    You're right that the options will probably be lumpectomy + rads or mastectomy, but there can be variations on that theme. Sometimes rads can be avoided even if you have a lumpectomy, although that's not likely to be an option for you if you do have two areas of DCIS.  And sometimes rads is necessary after a mastectomy, if the margins are too close. 

    Step one is to get your pathology reports from your biopsies, and the radiologist reports from your mammos, so you know what you are dealing with. Something you might want to ask your doctor about is an MRI.  MRIs are more effective than mammos at spotting high grade DCIS, so if there is more going on in your breast, an MRI might highlight that.  It can be helpful with the lumpectomy vs. mastectomy decision. 

    I hope that your second biopsy goes easier on you (or went easier on you, if you are reading this after the fact) that your previous biopsy!  Let us know how it goes. 

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  • stewbie2
    stewbie2 Member Posts: 70
    edited November 2012

    Thank you so much for the welcome! The biopsy today was MUCH, MUCH easier! No bleeding. They had to numb the 'ol boob really well, since they were squishing the hey out of the hematoma! At one point, I said, "Ow! I can feel a pinch on the other side!" and the doc said, "That's because we're pushing the needle all the way to the other side." Ew...

    THanks for the tips...i'll be sure to hang around often...you guys are a great source of knowledge!

    Steph

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  • LAstar
    LAstar Member Posts: 1,574
    edited November 2012

    Wow, I thought my biopsy was bad!  The MRI was helpful to me to determine the extent of the high-grade DCIS, so I second Beesie's advice.  Did you ever find out what the original lump on the right side was?    

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  • stewbie2
    stewbie2 Member Posts: 70
    edited November 2012

    LAstar~ The original lump was the back end of an inflammed duct. I'm curious as to whether or not they're going to revisit that boob.

    And, I feel like I still know nothing. I'm sure i'll be overwhelmed with info after the visit with the surgeon on Wednesday...

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  • stewbie2
    stewbie2 Member Posts: 70
    edited November 2012

    Okay...surgeon's visit on Wednesday, 11/21. Second spot is, indeed, a larger area of DCIS. We also found out that the first area is microinvasive. SO...the dx is Area 1: DCIS-MI, 3cm+ Grade 2 DCIS w/IDC microinvasion, Stage I, and ER+/PR-. Area 2: DCIS, 5cm+, Grade 2, Stage 0. 

    I'm in a great area--my surgeon is at the MD Anderson Cancer Center, and also performs surgeries at a hospital not far from my home (the plastic surgeon is the same way). So, the breast surgeon was able to bring my case before the board at MD Anderson and get the opinion and review of several doctors. I feel very confident in his abilities and course of treatment...which is....BMX on 12/28 (with lymph node removal on the left side).  

    The plastic surgeon comes highly recommended by the breast surgeon's staff, which is why my surgery is happening so late in the game--he was unavailable until the 28th. They had me tentatively scheduled for the 17th, which i preferred, but there's nothing I can do about that.

    All-in-all...just want to get these things off of me and get on the road to recovery.

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  • Merlcat
    Merlcat Member Posts: 177
    edited November 2012

    So sorry that you're joining...

    And apologizing from chuckling at your stereotactic biopsy...it sounds kind of like mine...they had a difficult time stopping the bleeding while my boob was dangling through that hole so they had me roll 1/4 of the way over-that's when I started to look like a scene from a Monty python movie....I almost passed out twice once they finally got me to sitting....and then the immediately after mammogram...omg! Didn't hurt but I guess I was woozy from the 'trauma'....all I know is that on the second view, I saw the smelling salts taped to the machine and down I started to go...

    I too was dx ed with dcis. Radiation and hormone therapy(especially) scares the crap out of me plus my dcis was multifocal so I opted and the cancer board recommended a unilateral mastectomy which I had on 10/29/12 with an immediate tissue expander placement for reconstruction to begin.

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  • stewbie2
    stewbie2 Member Posts: 70
    edited November 2012

    Merlcat,

    Laugh away! It was a total comedy of errors--and yes, much like a Monty Python movie! :) Oddly enough, as ridiculous as it was, it will be a 'good' memory when i come out on the other side of this--simply because the nurses and I were laughing through it all. I'll be doing immediate recon with tissue expanders or 'boob builders' as i like to call them, too.

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  • Heart2930
    Heart2930 Member Posts: 139
    edited March 2013

    Hi Steph,

    I am a newbie to this as well. Just diagnosed this month. Go in for a lumpectomy on 4/8. I too have had tons of precancerous cervix issues. Finally had a partial hysterectomy when I was 38. After years of paps, cone biopsies and LEEPs I was just done with it. Local anesthesia will not set for me, and getting a LEEP done without is one of the circles of hell I think.

    I understand where you are coming from on being sick and tired of cancer. Eventhough I have a relatively good diagnosis from the initial pathology, I am waiting for the other shoe to drop.

    My current treatment path is lumpectomy on 4/8. No tamoxifen. I have really bad endometriosis and since tamoxifen can cause endometrial cancer we (my BS and I) decided it was too high risk. Radiation is still up in the air. I am going in tomorrow for BRCA1 & 2 testing since my Mother had IDC. Depending on the final pathology on the lumpectomy and the test results we might not do RADs. We might reserve it for use in the future instead of using it now.

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  • april485
    april485 Member Posts: 3,257
    edited March 2013

    Just wanted to chime in here cause I found it really interesting about the cervical issues two of you also had. I was diagnosed with cervical carcinoma in-situ at the age of 24. I had colposcopy and then a cone biopsy which found no more cancer as they got it all with the colposcopy. I am now almost 58 (April 8th) and have not had a single bad pap smear since! So, almost 35 years and no issues. I hope this gives you some comfort.

    Since I am highly ER/PR +, the MO will prescribe tamoxifen for me and I am terrified of the drug. I am going to mention the cervical cancer to her again (I know she has my history already but it can't hurt) to see if that changes her mind about it. Even though I am post meno, my family history of osteoporosis made her decide to start me with tamox instead of an AI. I don't want either one! But, I am getting a second opinion on the drugs before I begin them since I am DCIS and truthfully, some doctors think that tamox/AI's are not necessary with DCIS so will weigh this carefully before starting on them.

    Best of luck to all of you!

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  • Heart2930
    Heart2930 Member Posts: 139
    edited March 2013

    Hi April,



    It is good to hear that your cervical issues resolved. I think breast cancer is more than enough to handle without other issues being present. I think I am finally over that hurdle as well. Unfortunately, I was in the unlucky percentage (it is something crazy low like 3%) of women who have dysplasia even after a hysterectomy. Thankfully it came back low grade and my body processed it away itself. I have had clean paps for 5 years now, so I am hoping I am done with this.



    The reason my doctor and I decided to stay away from the tamoxifen is that I have really bad endometriosis. I only had a partial hysterectomy so the endometriosis is still active. Tamoxifen can in rare cases cause endometrial cancer. The last time my ob/gyn laser zapped the endometriosis he got over 50 visible spots and figured there were probably at least that many he could not see yet. With that much endometriosis we thought it was just too much of an area to watch for problems. It's a really small chance of anything happening, but it is there. To be honest I am really nervous about not taking tamoxifen. My DCIS is highly ER+ and I just feel like the tamoxifen would be added insurance.



    But the whole game plan could change when I get my BRCA 1&2 results in 2 weeks. The worst thing is the uncertainty. If we had all the info now we could make some decisions, but the waiting is just awful. The bright side is that the breast center I go to is super about setting up appointments. Breast cancer/high risk patients move to the head of the line. I never wait more than 2 or 3 days between appointments. Pathology however just does not move that fast.

    Best of luck to you as well!

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