Anyone else find DCIS a frustrating condition?
Comments
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This article was in today's NY Times business section - pretty much sums up my DCIS frustration. Often I wish we were living 10 years or so in the future when (I hope) diagnosis will be much more sophisticated. Sometimes I wish I were living 20 years or so in the past, when diagnosis wasn't as clear. Maybe I'd have been one of those women who died with DCIS, but not because of it.
I know there are no crystal balls. I've gone back and forth on a lot of aspects. A few days ago I thought, Nope! I'm NOT going to do rad because it's probably not necessary. Then I thought about the recurrence rate stats and I thought, OF COURSE I'm going to do rad. Why wouldn't I do everything possible to make sure it doesn't come back?
Grrrrrrrrrrrrr.... I just wish they knew more about it, based on histology, pathology, size, margins, age, height, hair color.... OK, will stop ranting and obsessing. (For now.) -
I totally feel the same frustration! It seems crazy to me that I have something that is so early, and something that may or may not even develop into invasive cancer, yet here I am about to have both of my breasts removed because of it! I've had moments when I've thought I just won't do anything and wait and see if it ever becomes invasive....then other moments when I want it taken out immediately. Now I am struggling with whether to have the SNB or not. There is no clear cut answer to that for DCIS. I really don't want it done and to have to live the rest of my life with the lymphedema risk, but I also know that there is always a chance it could be in the nodes. It is very frustrating, but I remind myself to remain very thankful to have a DCIS diagnosis rather than something more invasive. Good luck to you! ~Suzanne
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Kitchenwitch: I tortured myself going back and forth about the rads. I even contemplated how much "luckier" I would have been if it had even been a tiny bit invasive so that my decision would be easier. In the end, I chose radiation so that I could say I did my very best to keep a more invasive cancer from forming. The crystal ball doesn't exist but at least there is evidence that shows that grade 3 comedonecrosis can recur as invasive. I allowed myself to have trust in my doctors who were not out to hurt me. They studied at the very best medical schools and practice at fine hospitals. I even told myself it was okay to buy into the medical establishment because really it was all that I had. I know it's controversial but my family and children wanted me to do it. I kept thinking of how I would feel if my daughter had this and I would want her to do everything in her power to make sure it didn't return. My first few radiation appointments were upsetting because I wasn't convinced. As I got to know the technicians, and became familiar with the routine, it no longer seemed so surreal and it became a part of my daily life. I am down to only 5 more treatments and I now feel lucky that it was caught early and that I did everything in my power to stay healthy. I have to put the other obsessive thoughts away now and live with my decision because there is no turning back. But I feel strangely at peace now. I hope you will feel that way too. Jan
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DCIS sucks in a major way! Think of the money that could be saved if they could figure out when it's going to be a life threat and when it's just hanging around and won't hurt anything.
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I found out a few weeks ago. DCIS stage 3, condo. I am still having problems deciding on lump vs. mast. My last doctor recommends mast but that seems so drastic for something that may or maynot become invasive. My first opinion said Lump. so I am so confused. I am thankful that it is DCIS and caught early, but the treatment is basically still the same. How do you finally decide between lump and Mast? I keep going back and forth. Scared to death! only 47
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Janet - I think I came around to your way of thinking just before you posted! Definitely I'll do radiation to prevent (or decrease) recurrence.... I'd hate to find out in a few years that it had returned. I would ask myself, WHY didn't I do it?? That said, I have a few issues that could make radiation more dangerous for me. The lesion is on the left side (worrying about my heart); it's very close to the chest wall; I'm an ex-smoker. I will find (I hope) a wonderful onc/radiation onc to help me sort all this out and make the best decision.
Roseg - "Sucks" is right! Think of all the money that could be saved if we didn't have to visit like 10 doctors to find the best treatment for us! I'm doing it, so I'm just as "guilty" but I do feel guilty about all the money being spent while I search for a good team.
Ajm - Three docs (four, if you include a pathologist) have all said lump + rad and no SNB to me, so I think that's a good consensus. I'm fortunate in this case to have very big breasts, so I think lumpectomy is a good solution for me. Have you gotten a 2nd opinion? Or a 3rd?? Please don't be scared to death - I do take comfort in DCIS having such a high cure rate.
Happy holidays to everyone!
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I agree..DCIS sucks, but I always felt thankful for that dx than a more invasive type. My DCIS was spread throughout my breast, so lumpectomy was not an option....they said there would be nothing left! SO I didn't have the angst some of you had, in deciding which way to go. I decided for bilat for a couple of reasons...one to have them "be a matched set" after TE recon, and two so I wouldn't have to worry as much about recurrence. Glad I decided that, as they did find some DCIS on my other side that had not shown up! My exch surgery was over a year ago, and I am happy with the results. Every 6 mo I have to go to my BS for a "manual" or "hands on" mammogram...not sure if he could really find anything that way, but he thinks it is important, so I obediently show up for appts!
Wishing you all a very happy Christmas and a New Year with NED!!!!
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What does NED stand for?? No Evil Diagnosis?? My younger son's name is Ned... we had a weird close call yesterday when he choked on a jawbreaker at school and luckily someone did the Heimlich on him.
But yes, I'm happy I'll have a new year with Ned!
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NED====No Evidence of Disease. Thank God someone knew the Heimlich and saved your son.
Anne
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Yeah KitchenWitch, very GLAD someone did the heimlich and saved your Ned!!! I had to do that on my daughter when she was 9 or 10....soooooooo scary.....it was a hard candy too. But yeah, when taking about bc, it does mean No Evidence of Disease, as Anne said. And that is what we all want!!!
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Wahine & Awb: thanks for the def! (smacking self in forehead) and yes, thank god for the heimlich and that assistant teacher. My hat is off to you for doing it to your daughter - how scary that must have been. My son just turned 9! Must be the age....
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My lesion is on left side as well, which added to the torment. The rad onc took CT scans and recently showed me the "hot spots" (I think where they aim) compared to where my heart is to prove to me that the rads were not touching my heart. And they weren't - I was able to see that. He said that there can be some heart involvement, and that used to happen years ago, but it is highly unlikely with today's precision and machines. I say this not to scare you - quite the contrary. He also told me about the rare possibility of developing a pneumonia that would be short term and, again, unlikely. He laid the cards out on the table. I think you live in NYC - he did his residency at Sloan Kettering, as did another rad onc I saw here in Chicago. The shopping around in the hopes of finding someone who would tell me not to do radiation was exhausting - and yet all I heard was "do it"...... The best advice I got was from a friend of mine who is a radiologist at University of Chicago - he said that this is Radiation 101 and that anywhere with reliable, state of the art equipment would be fine. I am down to only two more treatments and want to walk away from this without thinking about it anymore! I have so much respect for those women who have had more extensive surgery and/or chemo.....they are such fighters and winners! All things considered, even after what I put myself through, I believe I got off easy.
Thank God your son had the Heimlich!!!!!!!! Never a dull moment.
Merry Christmas to those of you celebrating.......
Jan
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Jan, thanks for all the info. My search for information is just starting and I haven 't talked to any radiation specialists yet, so it is good to hear that things have improved and some issues aren't as concerning as they used to be. I will definitely have radiation (won't fight it, anyway) and hope that it goes fairly smoothly.
Happy holidays!
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Would you be a candidate for one of the targeted radiation techniques? I too was torn with the recommendation of rads but no invasive disease. In the end, I chose mammosite. Although some people have reported problems, I had none and am glad I chose that "middle of the road" position.
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Ginger, I've seen just two docs so far. I asked one about mammosite (didn't know the name yet but knew there was a shorter course). She said I was too young - I'm 51, so I should have a few more years (!) and the data that exist are only for 5 years or so. Sigh. I'm glad it went well for you. I think I will have to do a more "traditional" course. I hear in Canada they do it for three weeks. I wish I could do that!
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well, here it is christmas night, kids are finally in bed and husband at work and of course my mind is wondering since i spent the day with family who i know are concerned but play twenty questions about my diagnosis-so i hopped on and thankfully found this board, it's true its very frustrating-they took me off tamoxifin and want me to start evista? is anyone else trying that route? they say if the side effects are the same with the evista i just have to learn to live with it? found it funny learn to live with this in my body? is there anyone else trying evista? hope everyone had a merry christmas-thanx as always
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Hi everyone, I was diagnosed on November 19 with DCIS in the left breast. From the 2 mammos, biopsy, and MRI they felt it was a small area and the plan was laid out - lumpectomy, radiation, and tamoxifen. I really felt like it was going to be okay - everyone said Stage 0 it's the best kind to have. Now I'm not feeling that way. I had my lumpectomy on Dec. 9 then found out no clear margins. Went back in on Dec. 21 for reexcision and the surgeon called me on Wed. to tell me the margins still aren't clear. Obviously, the DCIS is not only where the microcalcifications showed up on the mammo. I have grade 3 and I was listening to a doctor who is studying DCIS and he said grade 3 is one that doesn't always present itself with microcals. I can't believe 5 weeks after my diagnosis I'm looking at a bilateral masectomy for DCIS. I told the surgeon that's what I wanted and she agreed. I am small as it is and this last surgery definitely took a chunk out. I agree with the crystal ball. If I only would have known, I could have taken them off from the beginning. It is so frustrating. Now I'm wondering where else it is and if it's spread. The surgeon said the path report said it was still noninvasive but I don't know anything anymore. I do know that all of you are the only reason I have been able to get through this. You are all angels who lift me up at my lowest point. Thank you so much! I go to the plastic surgeon and bs on Jan.5 to set everything up!
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Boromon, Please try to relax and not worry toooooo much. I KNOW that is easier to say, than to do, but at this point, worrying will not do you any good. I had DCIS also, noninvasive, but was all through my dx breast, and since I chose to do bilat mast, they found it in my other breast as well. BUT they did get clear margins, and nodes were clear. At this point, they feel they got it all, and I should not worry about recurrence. As we all know, there is never any way to know if you will never get it again,but for now, I am content with the prognosis. I just am telling you this, so you won't worry about it being spread to other places. Usually with noninvasive DCIS, it is only in the ducts. Let us know what your PS says on Jan 5, and then when you have your surery date. Only at that point, after surgery, will they know for sure they have gotten it all, and have clear margins, and clear nodes.
I hope you can relax and enjoy the rest of the holidays, and celebrate a New Year anticipating the surgeons getting all of the cancer OUT of your body! If you have any questions I can help you with, please PM me. My bilat mast and TE recon was in 2008. Wishing you the very best possible outcome, with NED (No Evidence of Disease)!!!!!
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Hang in there best you can. I had a masectomy last year and it will put your mind at ease. Why not be sure. It is a big step to take but then its done. My reconstruction is done and the healing now is emotional. You will get through this. Stay positive and keep talking to all of your breast cancer sisters. We are here for you!
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It is so frustrating because the Surgeon seems to not be as worried as I am.They are worried about the length of the surgery and reconstruction but not the cancer. I am worried the cancer has spread but no one else has the same worry.
Anyone ever think of not doing the surgery and trying a homeopathic route?
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olivia, Not me! I just wanted all that cancer out of there asap! BUT, that is just my own opinion. You need to do what is best for you, and what you are most comfortable with. Have you let your surgeon know about your concerns? If you are able to talk to him about that, he might be able to put your fears to rest. Wishing you the very best outcome, and if you are unsure about anything, you do not have to rush into this too quickly. Take time to research your options, and even change doctors if need be. I had to change my PS just 5 days before surgery was scheduled, and am so glad I did! BE sure you have faith and trust in your doctors, and feel that they have your best interests at heart!
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My first post. Just had a second biopsy yesterday, waiting for results. The first biopsy - which was in the biggest calcification area - showed DCIS with comedo so I decided to have the smaller calc. area biopsied, too, just so I know what's what. Guess I'll go with lumpectomy and radiation if the second biopsy is clean. Won't have a choice if the second area is DCIS, too, it will have to be a mastectomy because the two areas are too far apart. But if it's mastectomy, then I have to decide if I want reconstruction. And what kind. I wish there was one "right" answer so I didn't have to figure it out myself. Sigh. I guess that's a childish attitude - which at age 61 I'm way too old for - but it is hard to make sense out of all this! I have a science/medical background (not a Dr. or nurse, but a lab person) and at least understand cells pretty well, but I'm still having a hard time deciding what to do. So yes, it's frustrating!
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Welcome Ellen61,
You find this board very helpful. Make sure you take a look at some of the other boards also. DCIS is challenging, you will never now what is the right decision. You will only now if you made the wrong decision if things get worse. I was diagnosed at 37 with DCIS w/o the option of lumpectomy. I had a left mastectomy w/o any reconstruction thinking that I would do it at a later date. 15 years later at the age of 52 I was diagnosed with DCIS in the right breast with an option for a lumpectomy w/rad. I did the mastectomy..I had enough worrying and did bilateral reconstruction. So now I have foobs. The choice is yours and you have to do what you feel comfortable doing with all the info you can gather so you can sleep at night. ((( hugs))) Good luck to all.
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