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DCIS
I was diagnosed with DCIS January 2. From my first mammogram in November to surgery in March, I have struggled. I hear that DCIS is not cancer because it’s non invasive. I read that it’s pre cancer. Anyone else with DCIS struggle with this? My treatment has been the same, to some extent, as if it was cancer. I even feel bad posting and asking because what others are going through. It’s hard when so many tell me it’s the best not cancer cancer to have. Like it’s not a big deal. Well, it’s my breasts that have gone through this, so it is a big deal. It’s the pain of recovery that says it’s something. The emotional and mental recovery has been just as hard as the physical. I’ve stayed silent because of the struggle of do/did I really have cancer?
Comments
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I was diagnosed with DCIS stage 0 in October 2024, had surgery and 20 radiation treatments. I asked my surgeon do I have cancer or had cancer. She said I had cancer. It seems like I didn’t have cancer because things went smoothly for me. When I make that comment to others they say count your blessings that it was easy. My doctor told me that cancer can be hard if not caught early. I struggle too with telling people I had cancer. I am thankful it wasn’t a hard journey. We go through things to be able to share others. I am glad yours was caught early.
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Hi,
Sorry you have to go thru this. I had DCIS and IDC and a lumpectomy last Feb . I hadn’t heard DCIS was pre cancer.
I can relate to what you said above. This whole cancer thing is like having whiplash. It’s been a year and I still have trouble accepting it and still worry if it will come back. I also had uterine cancer last Dec and a full hysterectomy in Feb. I too was told the breast cancer was the ‘best’ cancer to have. I thought, really, I didn’t think there was a ‘best’ cancer. All I know is it has turned my life upside down. Some days I feel strong but other days not so much. It has really affected me. I do feel sad a lot. I can relate to a lot of what you said. It’s hard to believe as I was always so healthy. I appreciate when people listen and don’t try to say things to try and make me feel better, but instead listen. I hope this post makes you feel heard. Your feelings are valid and unique to you and no one else knows how you feel. -
Thank you for your words. At my 3 week post op appointment I was discussing my feelings with my surgeon. How it all felt surreal until the first guide wire was placed. How I kept hearing the prognosis is good and glad it’s caught early. As we talked she looked at me and said: They took your diagnosis away from you.
This is true of a few people I told. I know they were positive for me, but I wish I had shared and opened up from the start. The cells removed are cancer cells. Thankful for clean margins. Now on to the next 2 doctors to hear about treatment options. I have read too many times that once free of DCIS something shows up years later.
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i like what your surgeon said. She’s right, I feel like my diagnosis was taken away from me too at times. This whole experience has just showed me more and more how I don’t know how people are feeling and how everyone’s experience is so unique. I feel too like, yes it was low grade cancers, but it was still cancer. And no one has a crystal ball to see that it won’t come back.
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That's so frustrating and wrong. I had double mastectomy (5/30/25) for invasive lobular cancer on right and they ended up finding DCIS on the left. Today my oncologist called it pre-cancer. That is so dismissive. It is not pre cancer, it is cancer cells in the duct that have not yet become invasive into the breast tissue. But as my surgeon told me, she's glad I had a double mastectomy otherwise I would be seeing her in the not-so-distant future to remove the other breast after it became invasive. I certainly don't want to be melodramatic, but I want my diagnosis to be validated.
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I was diagnosed with DCIS on May2nd and had a Lumpectomy yesterday. Before the surgery I had gotten conflicting information too, so spoke to my doctor. He said yes, there is conflicting information out there and differing opinions among some doctors, but it is cancer. All that to say the unknown is scary and the fear is real, as well as the cancer cells. It took me a while to get to this place, and support from others, but now I know DCIS is not the same place as others on this journey, but we are no less affected. Now I’d like to know more about the side effects of radiation, chemo and hormone therapy. That’s my next step. Can anyone offer some guidance please about what you’ve experienced? Thank you!
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I had 20 radiation treatments for DCIS stage 0 and my side effects were at times I was tired and my skin turned pink. I didn’t have any peeling or blustering. I did ok with the radiation. I am taking 20mg of Tamoxifen and I have some hot flashes but not severe and not all the time. I have been on Tamoxifen since February. Each person is different and I hope and pray that whatever you decide goes well for you.
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Thanks for sharing! I have to say that I struggled at the beginning because I told no one except my husband. It was a few weeks before one daughter’s wedding and my other daughter had two children who were graduating a few days later. Sharing has helped tremendously.! The importance of having those you can open up to is irreplaceable and I hope and pray that it continues to be less severe for you. Thank you!
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Hi there. Sorry for what you’re dealing with. I had DCIS in 2021, treated with two lumpectomies (to get clean margins) and 15 radiation treatments. Last year I had DCIS in my other breast and underwent double mastectomy + reconstruction. Couple of things I want to say:
- It is indeed cancer, it just has not spread. My oncologist kept flip flopping between saying I hadn’t had “invasive cancer” and that I hadn’t had “cancer.” It made me so upset because why on earth had undergone all that treatment if it had not been cancer? I never went back to that particular doctor again. I know what you’re feeling and how maddening it is and I’m sorry you have to deal with that on top of everything else.
- I did not have chemo but I did have radiation. They gave me a 100% aloe vera gel to protect my skin, which I used religiously and it worked so well that I had absolutely no changes to my skin - color or texture or anything. What I didn’t know is that even if you can protect your exterior skin, radiation still messes with the skin and tissue and muscle, making it fibrotic, less elastic, with diminished blood supply, etc. This becomes a big problem if you are undergoing reconstruction and need to use implants instead of your own tissue. I had pain and contraction, which they tried to correct, which ultimately led me to lose that implant due to diminished blood flow to the skin. I had to start all over on that side using a muscle and skin flap from my back wrapped around a tissue expander. Even after multiple surgeries, that side is still misshapen, painful, and mismatched. I just had my eighth and hopefully final surgery a couple of months ago and am now trying to come to terms with everything that happened and my suboptimal result. I wish I had known how radiation would affect my future treatment options and how complicated reconstruction would be.
Feel free to reply or message me directly if you have questions. May your experience be much smoother than mine! ❤️🙏🏻
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I had a lumpectomy and no other treatment besides tamoxifen. My mammogram this past November showed suspicious microcalcificatins again in the other breast. Thankful the biopsy removed 90% of what they saw. Only 5% chance of it turning malignant.
The only issue I have had is being 51-52 and dealing with “Is it menopause or the medicine?” The only side effects from meds has been emotions out of control at times as well as sore joints/muscles…more than usual.
Sorry I cannot help with answering about a mastectomy or any other treatment. I was even able to skip radiation.
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Hello Survivante:
I was just diagnosed with DCIS stage 0 in my right breast in January 26. I've seen the breast surgeon and today I saw my plastic surgeon. I thought I had my mind made up about a double Mastectomy with reconstruction, but now I'm really confused about whether I should do both breasts. My plastic surgeon said I don't really have to do the left breast and suggested I research that more. He also gave me the warning of infection in one or both breasts after surgery, poor nipple blood supply (and loss), explained the expander option, or no expander and remain flat chested until I decide if I want implants. So much I need to decide on now. Any help would be appreciated. Oh also, I have implants in my breasts now that would be removed during the initial surgery.
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Hello! There are so many things thrown at us after being diagnosed. Slow down and think about what is best for your situation. For me, I had a lumpectomy on the right and she reconstructed the left for symmetry. Things would have been great if I had not reacted to the sutures and did not heal well. It has been almost a year and I am happy with my decision.
At my mammogram this past November, more calcifications were found on the opposite side from last year. Thankful 90% was removed during the biopsy and very low odds of it turning malignant. No surgery for now. My surgeon and I discussed options and decided that if anything is found during my follow up scan in May, I have surgery.If it comes down to a third scare, then I will take time and weigh my options. Can I keep going through this or is a mastectomy a better option. Too many what ifs!
I know that may not help much, but each of us is different. Do research and weigh the options. I did not need radiation after surgery, but know someone who did have radiation after DCIS.
Praying for wisdom and discernment.
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Hi there! I’m so sorry you are dealing with all this. The choices are indeed so numerous and overwhelming. Have you gotten a second (or third) opinion? I found it helpful to hear each surgeon’s approach and the reasons behind them. For me, I had had so many scares and had been in and out of the doctor’s office for 3 years when they found the second DCIS in my other breast. I was constantly awaiting results and could feel my blood pressure and heart rate rising all the time. As my surgeon put it - we could keep trying to “peck away” at it but in all likelihood, I’d end up needing a mastectomy down the road, which we all agreed with. That being said, reconstruction is not always straightforward - there are so very many options, some you will be a candidate for and some you won’t. And reconstructed breasts are nothing like real or augmented breasts - I am fairly thin so for me my only option was implants without fat grafting so they very much look like implants underneath my skin. I’m sure the flap reconstructions look more natural but they can also be huge surgeries, harvesting tissue from other parts of your body. Whatever you decide will be so specific to you and your body, lifestyle and preference. For me what was most helpful was having multiple consultations with reconstructive surgeons as well as speaking with women who had been through those options. The doctors you consult should be able to put you in touch with similar patients if you think that would be useful to you. I hope this is helpful. Please feel free to reach out again at any time. Apologies for the delayed reply - I have been traveling. Best wishes and best of luck to you. Sending you so much strength and positivity.
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I went through a bilateral masectomy 7 weeks ago no reconstruction as I am healing well but did need some PT due to cording. My decision to not do reconstruction is that I did not want to risk extra surgery in case I was not comfortable with the way they are and possibly some side effects. Even though I am like not thrilled about being flat but I am now cancer free which was the best option for me. I do suggest you research the areas of reconstruction types you want to get and discuss with the plastic surgeon because some time people get immediate reconstruction at the same time as the masectomy and then others wait for a bit because of the surgeon requests.
If I chose reconstruction they would have gotten it done with on the same day as my masectomy
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I chose to do both even though my right side was the one that had the DCIS and did have IDC. When I went through my lumpectomy surgery in October and I didn't get clear margins so they did a scan before my reexcision day that I was going to have Nov 25 . I was so believing that after the scan and the biopsies that it was going to be saying that they actually got it all and that I was done with surgeries so when I got the opposite news that totally devastated me to tears because I was like set in the mood for good news and was hoping to get a break before radiation. I was hoping to be like only one surgery and not have to worry about anymore surgery so after that I ended up regretting my choice of having a lumpectomy surgery and wish that I would have chosen the masectomy at the time instead of the lumpectomy but we thought it was only a small amount in my breast that the surgeon would have gotten it all but it was not.
So I didn't have a reexcision made the choice to get a bilateral masectomy because I didn't want any disappointments again and I was going through a masectomy anyways so I was like I might as well just do the left side also because what if in a year or two it ended up in my left side and what if the left side would have been with the more severe kind in the future even though it more likely would not happen but if it did and I had not got rid of my left side I would have been kicking myself in regret. So I just wanted to have a peace of mind.
I'm cancer free for almost 2 months and I didn't get any reconstruction.
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I wish that I could have known how wrap around my DCIS was as thankful my IDC was not much but we thought my DCIS was going to be much smaller than it was.
If I had known ahead of time I would have gotten a masectomy done with instead of a lumpectomy because I feel like I wasted a surgery because I ended up with a masectomy done with a three months later.
It's like I could be almost 6 months post masectomy instead of almost 2 months.
It's something that I regret but now I know no more mammograms because I went flat.
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