Diagnosed w/DCIS yesterday
Comments
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Robynkk: I had a unilateral (right side) skin-sparing mastectomy on June 2 and the 4-6 week recovery time seems just about right as a timetable for getting back to work. I was never "bed-ridden", even the day after surgery. The recovery was much easier than I thought it would be, but things still take time.
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I was diagnosed with DCIS 1/10. I had 2 lumpectomies on left side. I was all set to start radiation and take Tamoxifen when I got 2nd opinion- they thought margins were not as clear as my surgeon did. So I had another mammogram which led to an MRI and stereotactic biopsy revealing DCIS in new area, same breast. "extensive" and "sprinkled" stand out in my mind. MRI also revealed atypical lesion on right side requiring needle biopsy. Rather than go through 2 more lumpectomies, I've decided to have a DM using DIEP method. I've met with Dr. Matthew Carty and Dr. Peggy Duggan in Boston and Dr. Allen in NYC. I know Dr. Allen is out of network and when I asked his staff if they balance bill (to me, the difference of what he charges vs. what insurance will pay), she said she could not answer that question due to insurance legislation that was passed last January. This makes no sense to me at all. If he's not a participating provider, there would be no contractual obligation on his part. Since she wouldn't say they didn't (and I'm sure he's worth every penny) I'm suspecting they do. I'm just annoyed I can't get a straight answer and told her I'm having trouble going forward without some understanding of what my financial responsibility would be. Anyone have any experience using out of network benefits, good or bad? Would also love to hear anyone's experience with the DIEP surgery and recovery.
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OMG, Dr. Holmes from USC JUST called me, said his team reviewed the pathology slides I brought down and the report with the DCIS malignant diagnosis and his team DISAGREES with the findings. They feel it's AD??? like PRE DCIS so he wants to do a surgical biopsy next week. I am soooooooooooo upset, it's almost like I was settling down, had a plan and now everything is upside down again. His office will call me tomorrow to schedule it for next Tues. or Thurs., then 3-4 business days later we should have a diagnosis. He said if I have this AD pre something then I just take drugs to prevent getting the cancer. So then one Dr. says I have it, one says I don't I just worry for the rest of my life? My husband's not home, can't locate my daughters, I'm crying, I'm so upset right now. I just want all of this to be over with.
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Robyn. I am just looking around at threads and found this one. I was 56 last year when I was dx;ed with DCIS in the rt, one area for sure and a second biopsy was questionable- MRI showed scattered dye uptake on the left- they told me that a MX on the right was recommended and to MRI the left every 4 months----Well you know what one goes through when the say the 4 words none of us want to hear and I do too. I sat there think OH RIGHT_ I AM DOING THIS AGAIN IN 4 MONTHS---HELL NO! I ask for a BMX and had surgery on 10/19/09 and am just fine. I did not have recon because I just did not want more surgery- I mean what am I doing besides fighting gravity, I tried silicone prosthetics but they weight caused my LE to worsen- I have been using the foam foobs from TLC and have been very comfortable no matter where I have gone. Truthfully I will probably stop wearing them too- just don't need them anymore.
I respect any decision you make or any woman makes. I just wanted to reassure you that there is really GOOD life after MX---Mine could not be better.Take all the time off that your surgeon gives you- cook ahead or circle your friends to cook for you, I hired a house keeper for my recovery period, and had some cami's with pockets for the drains- BTW I am looking to share those as I don't need them any more. PM if you can use them- they are med. and one lg.
Oh yeah-are you staying overnight in the hospital over night? A nurse friend of mine stayed the night with me and that was a great comfort. Good luck and hugs to you,Miss Kitty
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Robyn, that's about the size my DCIS was, but lumpectomy was most certainly NOT out of the question (I'm not large-breasted either). I'm learning more and more that one what surgeon claims to be as fact turns out to be only one person's opinion. If you're set on mastectomy, that's one thing, but don't think that's your only option just because of 5cm of DCIS.
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I guess 50 different people will give you 50 different opinions, not really very helpful right now.
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robynkk - So I'm thinking AD is atypical ductual hyperplasia? I was diagnoised with ALH atypical lobular hyperplasia in January. First of all that is good news!! The good news is that it isn't cancer. A short explanation - it is funky cells (not cancer, but not exactly normal) growing faster than normal. The not so good news is that my oncologist says it is precancerous. He wanted me to take Tamoxifen for five years which would lower the risk of it turning to cancer. The surgeon said I would have to have MRIs every year and that would lead to more biopsies (already have had severl) because MRIs show more. Because of my family history and previous biopsies I was just done with all of the worry. I decided to have preventitive masectomies, May 6, 2010. I have not regretted my decision. No more mammograms, no more MRIs, no more biopsies (and worry) and no tamoxifen.
So talk to all your doctors, talk to people that are on the drugs they suggest and then take your time - ask your doctors if you have time to research all your options. I had a 2 week trip in April, so my doctors said I could wait and decide what I wanted to do until after. So I had a couple of months between diagnosis and surgery. There aren't too many ladies that decide on masectomies that have atypical cells, but there are some on breastcancer.org. Because mine wasn't cancer I was able to have nipple/skin sparing masectomies. To be honest the surgery wasn't bad and I have been very pleased with the outcome. After talking to everyone, I think you will have a feeling what is right for you - drugs or surgery. My surgeon would have been ok with either decision. Good luck - remember you have options.. everything will be ok... keep us posted.
One more thing, because of it being ALH it was covered by my insurance. PM me if you have any questions. Lots of hugs, Valerie
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Robyn,
I'm so sorry that you are now faced with conflicting diagnoses and recommendations. Have you read the thread here in the DCIS forum about the NYT article? This article explains that it's not that unusual for DCIS to be misdiagnosed. Here's a link to the article: http://www.nytimes.com/2010/07/20/health/20cancer.html?_r=1&hp
So obviously you are not alone in the situation you face, although I realize that this doesn't help you much. As I see it, you the following options:
- Although ADH is a pre-cancerous condition (which puts you at a 20% - 30% risk of getting BC), you could decide to go ahead with the plan and have the bilateral.
- Alternately, you could decide to have a lumpectomy as a first step, so that there is more breast tissue to examine than just the biopsy sample. ADH and DCIS can look quite similar under a microscope and when the sample size is small, it can be difficult to determine what you actually have. Additionally, usually when ADH is discovered in a biopsy, an excisional biopsy (same surgery as a lumpectomy) will be done to remove the entire suspicious area. This is done in order to ensure that nothing more serious than ADH is present. The fact is that when ADH is found in a biopsy, in about 20% of cases something more serious will be found once all the affected breast tissue is examined. That's what happened in my case. My biopsy sample showed only ADH but then ADH, DCIS and a microinvasion of IDC were all found when I had the excisional biospy. If you have the excisional biopsy and it shows only ADH, then you might decide to forgo any further surgery because with the larger sample, you could be confident that you don't have breast cancer. Alternately, if it turns out that you do have DCIS, then you might go ahead with the plan to have the bilateral.
- A third choice is to get a 3rd opinion, one to break the tie. I personally don't have experience with Dr. Lagios but it sounds like he might be a good choice in a situation like yours.
So sorry that you find yourself in this situation now.
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Valerie Hip Hip Hooray for you! Brave and proactive- I too refused to repeat the act in this play!
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HI Robynkk, Hang in there and take deep breaths. The good news is that you have time to get answers. I know it feels better when you have a plan, but you need good information to make that plan. I hope you are feeling better today. Keep us posted. Be well. DCChef
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I just found your post Robynkk...I am sorry you are going through this. The decsion making is greuling.
I had DCIS and eventually opted for a unilateral MX. My BS was able to spare my skin & nipple. My breasts were less than A cup and my lesion was not close to the nipple.
I am one month post op now. I had immediate recon with alloderm & implants and all is healing well. I know that mx for DCIS is not the "gold standard" (lumpectomy w/radiation is). After my first excision I was told I needed another and then rads. For me, radiation was not part of the treatment I wanted. This is something you have to decide with your doctors and it is not easy!
I wish you success in getting your questions answered so you can make a confident decision. I do want to add that my PS' nurse told me that it is normal to wonder about your decisions in regards to breast cancer treatment based on her own experience and that of the women she nursed.
Hope this helps.
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Robyn- I just wanted to tell you that my original BS (I switched BS's down the road) told me I had ADH and also recommended a surgical biopsy. After the pathology report came back they said, "Oh, it's not ADH after all, it's DCIS, and we need to go back in." (As Beesie said, they look very similar.) They gave me a choice of lumpectomy or mastectomy. That's the point I chose MX, but wanted a NSM so that is why I switched BS's. I chose MX for all of the reasons vmudrow listed above. After my MX, the final pathology report came back with not one spot of DCIS, but multiple areas that had never shown up on any mammogram, ultrasound or MRI. Anyway, I don't really think there is much difference between ADH and DCIS. Either way, your body is showing it's ability to make cells faster than normal. It's such a gray area as to when the ADH technically becomes DCIS. And no one knows when or if the DCIS can or will become invasive. LIke everyone else says, try to educate yourself as much as possible on all the ramifications of each different choice of treatment and then listen to your heart and what YOU want to do. You have to live with your decision, not your BS, PS, etc. Good luck!
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Kate - interesting - I didn't realize that there isn't much difference between ADH and DCIS. Or in my case ALH and LCIS. Wow, even more glad I made the decision I did.
So you were diagnosed right after Christmas or did you know before? I usually have my mammogram in December, because that is when my birthday is, but after having to have numerous tests (always in December) and totally ruining Christmas I switched to having the mammos in January - hence I was diagnoised in January. I did enjoy Christmas and my birthday though!
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Valerie- I got diagnosed right between Christmas and New Year's Eve. Merry Christmas and Happy New Year to me, huh? So I guess that is my cancerversary! We're going to call it my Festivus for the rest of us! LOL!
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I agree with Kate - you are the only one that has to be OK with your decisions. Please know we are thinking about you and praying for your strength and recovery.
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Hi Kate,
Dr. Holmes at USC said the main difference between ADH and DCIS was that one was benign and one was malignant. I said, well that's a pretty big difference! I'm trying to wait before I panic. My surgical biopsy is at USC on Tuesday, he said it would be 3-4 days for results. I guess if he comes back and says it's ADH, all he wants to do is put me on some meds, no surgery, then I'll get a third opinion!
Don't know what I'd do w/out all the support of you wonderful ladies!Robyn
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Robyn, I didn't realize that you had the surgical biopsy scheduled. That's good. Hopefully once more breast tissue is examined under the microscope, the diagnosis - one way or the other - will be definitive.
This website has a picture of the progression of breast cancer that really helps show how difficult it can be to identify ADH vs. DCIS, if you don't have a large tissue sample to examine:
http://www.breastcancer.org/pictures/types/dcis/dcis_range.jsp
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Great graphic Beesie!
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Bessie,
Yes great graphic, ADH and DCIS look VERY similar. So if one doctor diagnosis you with ADH and another with DCIS would you get a 3rd opinion or go with the surgical biopsy diagnosis and not the stereotopic biopsy diagnosis??
Robyn
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Robyn, personally I would go with the surgical biopsy diagnosis and forget all about the stereotactic biopsy. And if there was any question about what appears in the surgical biopsy sample, I would get a 2nd opinion on that.
Stereotactic biopsies only pick up a small sample from a few spots within the affected area. Because so often ADH and DCIS can be mixed together, plus there can be different grades and types of DCIS mixed together too, it's always possible that a stereotactic biopsy will provide only part of the total picture. In my case, my stereotactic biopsy showed ADH. My excisional biopsy showed ADH, grade 3 DCIS with comedonecrosis, 4 different types of DCIS (solid, cribriform, papillary and micropapillary) and a microinvasion of IDC. I didn't have clear margins after the excisional biopsy so I went back for a mastectomy. This surgery uncovered more ADH and more DCIS, with all the same varieties except for the micropapillary, plus some DCIS that was grade 2. So the more breast tissue that is examined (until all the affected tissue has been removed), the more complete picture you get. And the picture can continue to change. Usually the changes are subtle - a different type of DCIS isn't likely to change the diagnosis or treatment - but sometimes the change can be significant.
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Beesie,
Thank you so much for your reply! Wow, you've really been through it. Well, my Dr. at USC thinks the pathologist that originally looked at my slides and diagnosed me with DCIS was wrong, his team looked at the slides and only saw ADH so thus the need for the surgical biopsy. He said something about there being an 85% chance the results will show ADH and 15% DCIS so??? He said if it's just ADH I will just need to go on meds and not have surgery. I just want this all over with. Part of me hopes it will show DCIS so I can just get this all over with and not have to worry every year when I get my test. ?? I guess I'll know more in a week. Thank you so much for all of your help here!!
Robyn
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I agree with Bessie- they "may have missed the spot" on my second biopsy, so they recommended a MX anyway---surgical biopsy would have been better.
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Oh dear, had the surgical biopsy yesterday at USC. Got there an hour early and they moved appt. 2 hours up so we waited 3 hours,had to go in first to install these probe things in my breast while it was under the mammogram machine. It hurt like xxxx, I had a huge hemotoma/aka BRUISE from my last biopsy and when they put me in the vice I passed out. Dr. had to grab a sheet and put on floor and I laid down for about 10-15 mins. I felt so stupid but felt better and they finished. Then they drove me a block away to the hospital for the surgery. I got there at 7:30am, was first seen at 10:30 and was out of there at 7:30pm.
Should have results by Friday or Monday they said. At hospital everyone kept coming in and they would SIGN or INITIAL my breast, it was the strangest thing like they were confirming they were there? I asked the heart monitor guy, are you going to sign my boob? My husband said, she thinks she's at a rock concert. Okay I've never even BEEN to a rock concert and now these people are looking at me like I'm some crazy flasher
Finally got out of there, felt very nauseas, glad to get home. I have to wear this wrap thing for a week they said? Waiting is the hard part!
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Waiting is truly the hardest part of this stupid journey we're on.
I will admit to chuckling as I read about your boob-signing. How odd!
I'm hoping that you get good news!
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robyn- I started out with a surgical biopsy, too, so can definitely empathize with your story. (I'm sorry, you're going to stick a wire in my boob, then squish it in a mammo machine and then I'm supposed to drive myself to the hospital for the actual surgery? And then, when I get there, I have to show said boob to every Tom, Dick and Harry that walks by? Really? REALLY?) I swear, do you think men would put up with this s*** if it were being done to their testicles? I think not! Hope you get some good news to make up for all that! Good luck!
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AMEN TO KATE"S POSTING!!!!!
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I was diagnosed Dec 23 - Merry Christmas - and, just a side note, try getting anything done over the holidays was next to impossible.
I had all of my appts to "interview" docs in Jan and once I decided on UCMC (Jan 19) I was scheduled for early March. I was off about 6 weeks total. I probably could have gone back at 5 weeks, both consider if you have a flap recon, you have two areas on your body to heal and two that are sore. And, just the 10-12 hrs of anesthesia is very draining.
Take the time to heal, it is well worth it. Once I returned to work, I went back FT and was really tired every night, but felt good during the day.
Keep in touch, I will try to check this thread at least once a week!
Best,
NSWTD (not sure what to do) - which is how I felt the day I signed on to this site!
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Merry Chrtistmas and Happy New Year! That just stinks!
I am glad it is behind you and couldn't agree with you more about anestheia-gave me a spaced out brain for weeks and that was another reason to take the time to heal.
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The nurses were making fun of one of the interns because he signed his WHOLE name! they were laughing, saying, he was just supposed to INITIAL it!! LMAO
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Kate,
That's EXACTLY what I told the Dr., I said, if men had to put their testicles in this machine they would have made it differently! The nurses all laughed and the Dr. put his hand down there like to cover his parts and made a face. I said, YEAH but before you put them in there have a stereo biopsy so the inside is all bruised then squeeze that vice really tight while they put needles in it! The nurses were laughing, I don't think the Dr. thought it was so funny! I think they were glad to get me out of there!
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