DCIS - What I Wish I'd Known (and took six oncologists over two years to find out!)
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- เผยแพร่เมื่อ 23 เม.ย. 2023
- If you need ongoing support, I hope you'll join my facebook group: "Thriving with DCIS". In this video I'm talking about the one piece of information that would have made a world of difference to me as a DCIS survivor, when navigating my path toward mastectomy. Disclaimer: The opinion shared in this video is that of one (highly respected) medical professional and may not be shared by your oncologist.
- Related Videos:
This amazing video came out after I made this video. It is a pathologist's description of DCIS from a technical perspective, telling the story of how low grade DCIS differs from high grade DCIS and when comedo necrosis enters in: • DCIS - A Pathologist's...
This video illustrates the dilemma of over treatment for DCIS, which is the reason I was searching for information about why DCIS is sometimes dangerous and sometimes not: • 'Stage Zero Breast Can...
My Perspective on DCIS Two Years Ago (I was a little naive): • Lumpectomy Just in Cas...
The playlist of my entire Mastectomy Story: • Mastectomy Story
- Links:
The only video/site that I've EVER found that adequately describes DCIS: • What We Know and Don't...
There are ongoing trials which allow women to "watch and wait" rather than undergoing surgery for DCIS. Amount of comedo necrosis is the factor that determines eligibility for these trials, which further supports the opinion of the doctor who advised me. This study shows how much variability there is among medical professionals when it comes to the threshold for comedo necrosis, showing that we are still in the infancy period when it comes to the treatment for this disease:
pubmed.ncbi.nlm.nih.gov/30980...
My professional TH-cam channel on nutrition and detox is at / @seekingdeeperhealth
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#seekingdeeperhealth #nwnutritionist #mastectomy #breastcancer #dcis
I had both invasive lobular and DCIS plus, atypical hyper dysplasia in 1 boob. 3 biopsies on 1 breast!
I asked them to take both.
If it’s sick, take it and take the other so they don’t have to worry about it coming back. Pathology results were done in both. The left breast had the 3 biopsies and cancer my right breast came back with precancerous masses.
*** if you find a cyst have it removed asap! DO NOT WAIT!****
I know too many women who have died or are stage 4. Too many women getting breast cancer these days.
Not sure exactly when this video was done but I think it is great women to be sharing their personal dilemmas and experiences with oncologists in the treatment of DCIS; especially since it is increasing terribly at a fast rate. I feel there is much to be improved in the medical field in the treatment of DCIS; and only women speaking out and not just accepting conventional protocol in the treatment of this disease, that women can become more informed as to what is best for them; I am not saying to ignore your condition but to question everything and you make your choices.
I had high grade DCIS (with necrosis). It grew a great deal. I had to wait 5 months to have surgery (DMX with AFC) because of a covid backlog. In my post-op biopsy there was invasive cancer. Thankfully, I still had safe margins.
I’m glad you’re ok. That must have been so stressful!
Did you have mastectomy or lump? I just found out I have grade #3 DCIS with necrosis and my doctors meet Monday to discuss my case. I’m 65 and thinking just remove both breasts and do the reconstruction at same time to be done with it all. I can avoid radiation with both removed from what I’ve read. My hematologist warned me years ago to stop letting “them” (other doctors) test me so much or I’m end up with Leukemia! I just want all this over with! That biopsy table was a joke! I’ve never hurt so bad trying to climb around n hands and knees to get in right position and my boob in the hole 🤦🏼♀️. Then the doc must of hit a nerve, my whole body came 3” off the table! It hurt sooooo freakin bad! That was the first sample taken. The other two I felt nothing. My legs & feet were hanging off the table. The dip in the middle gave my neck so much pain. Next design needs to be done by a FEMALE!
I had two mastectomies. Yes. I did so partly to avoid radiation which was a nightmare for my good friend who got bc a few years ahead of me. Her experience really scared me. I'm so glad I got mastectomies now--no more scans.
@@estrogendiaries Your comment has strengthened my confidence in NO RADIATION! I saw my assigned surgeon 🤦🏼♀️. He really needs to retire. He scoffed at me wanting to avoid radiation & hormones! Plus no eye contact. I’m seeing another surgeon this Friday and my Hematologist agrees with me NO RADIATION. So I’m getting a bilateral mastectomy and hopefully silicone implants during surgery. She said if I were 75yo she’d agree to a lumpectomy and just send me home with no radiation. But I’m 65 and breast cancer runs in family - I could get it again if breast tissue there. Being old and that happening would be too much on me that age.
If I may ask, what happened to your friend? My fear is with mine being so deep they might get off target and hit my rib, lung or heart! Plus 5 days a week for 4-6 weeks of that - no thank you.
That is great news. Thank you for sharing.
Your knowledge is astounding...
Thank you! Knowledge is power.
Thank you so much for doing your videos. Your information is really helping me. My Invasive Lobular Carcinoma was also found by accident. I had a suspecious area on my right breast and the radiology department ordered a MRI. I am clostrophic and put it off for 8 months. During the MRI in July, a distorted area was seen on my left breast (the right breast has calcifications and I am having a 6 month MRI next week as a follow up). For the left breast a mamogram with contrast and an ultrasound was ordered which confirmed cancer. I than had a MRI guided biopsy--I had early stage ILC. In my heart I wanted to have a double masectomy, but mostly I wanted this cancer out of my body as quickly as possible. My surgeon's nurse called and we had a video call. My husband was also there. She didn't recommend the double masectomy but did assure me it is my choice. All my husband could say is that she really stressed the fact I should have a lumpectomy. I had a lumpectomy and 2 sentinel nodes removed. All margins were clear, so I am now "cancer free". After looking at my biopsy after the lumpectomy I saw there is also a 7mm area in my left breast and a different area in my right breast. I wish I knew in July what I have learned since than. Your videos have helped me tremendously as have a few groups for ILC. I have seen 3 oncologists and the last one is the only one I trust to know about breast cancer, and especialy how sneaky ILC is. My surgeon is very hard to communicate with and her assistant likes to make you wait 5 or so days before she calls you back. I'm not complaining, but I may make an appointment with another surgeon also. I do not want to spend the rest of my life worrying and having MRI's/mamograms. I am 66 and 2 1/2 years ago I was diagnosed with Ocular Malignant Melanoma. A very rare cancer. Sorry about the long message. I just want you to know you are helping many!!
Glad to hear you are cancer free. That’s wonderful!
Thank you for sharing your story. I was diagnosed recently with the Invasive DCIS, had a lumpectomy (I would have preferred a mastectomy) and I am slated to start radiation treatment. I am finding it very annoying that the Oncologists seem to make decisions without discussing this more in depth with me. Very frustrating. Thank you for your insight.
Yes indeed. We deserve better!
How come a DCIS is invasive? I thought it was DCIS makes it non invasive
Thank you for sharing. Just starting my journey.
Thank you for your really important information. Very appreciated.
You are very welcome. Be sure to let me know what else you’d like to see here. I’m al says looking for ideas!
Everyone talks about the radiation, but not the effects of radiation-including death. My mom had breast cancer, but died from the radiation therapy. When that happens, is it counted as a death from breast cancer or as an effect of treatment? When we get the statistics of women who died of breast cancer, how many died from cancer vs. how many actually died from the treatment. That never seems to be discussed.
I have a friend whose young daughter died from the aggressive radiation therapy that she had for her cancer, which she was cured of in the meantime. So I totally get it. I think that we are seeing progress with regard to tissue and organ damage nowadays from rads but I'm certainly not lining up for it. My close friend said that rads put her in the ER and it took her five years to recover movement and to be pain free after her lumpectomy, so I decided to get a mastectomy in order to avoid radiation. HOWEVER, at the San Antonio Breast Cancer Symposium this year there were many talks about how rads are less damaging than lymph node removal and should be given preference to LN dissection, so we are no where near doing away with radiation in breast cancer. I hope that you and I both can continue to speak out about this in our communities. I think that in person advocacy is better than ranting on TH-cam though, because gains will be made as the years go by and TH-cam videos are eternal.
Thank you so much for this video❤
I was diagnosed in 2015 with PLCIS ( pleomorphic lobular carcinoma in situ) It was zero stage at that time. I went to many second opinion doctors and had biopsies over the years. My current doctor performed a masectomy in July 2022. Im glad I had it because after the surgery they tested the growth and it came back as stage 2 cancer. Thank God my doctor was able to remove it all with clear margins!!! I did not have to get chemotherapy only radiation for 6 weeks. I chose to go flat and I am happy with my decision!!! I am blessed to be here because I know alot of women that have passed from breast cancer. Thank God for your channel it is helping me to stay encouraged and prepare for my second masectomy coming up in January.
You and I have so much in common! Keep an eye out for the Lobular Breast Cancer Alliance and Flat Retreat Community! They’ve been the biggest gifts I’ve found!
Thank you for sharing. I’m in the process of making decisions for my care and I feel the information out there for DCIS can be very contradictory. My biopsy notated necrosis and the name alone made me think it was a bad thing. I really appreciate you taking the time to explain ❤
Glad it was helpful!
I just got my pathology report back, and mine is low/intermediate, but it does say "necrosis" but not "comedo necrosis" Is there a difference?
Thanks for this so much
You're so welcome!
Thanks for wanting to help
Of course!
Thank you! You have confirmed what my oncology team has advised.
DCIS is the most bewildering part of my diagnosis. But just because they call DCIS "stage 0," doesn’t mean it's trivial. The terminology can be confusing at first. I felt like a pest for asking my doctors so many questions, but we must be brave and make sure these experts explain things to our satisfaction. And patients need to understand there are no guarantees. Nature does what it does, and science tries to keep up. Researchers are still trying to understand what might turn a harmless DCIS situation into an invasive cancer.
Another tricky thing is damn DCIS doesn't always show up in mammograms or even MRIs. My docs couldn't know the extent of it until after "lumps" were removed and sent to pathology for examination under microscopes.
They successfully removed my stage I, tiny invasive ductal carcinoma with a lumpectomy, but pathology revealed that too much DCIS remained. A re-excision (2nd lumpectomy) couldn't clear enough of it either.
When doctors said, "Well, now it's mastectomy time," I balked. Why not wait and see if it becomes "real" cancer? Well, in my case that's too much of a gamble.
Hopefully soon, doctors will have better ways to detect DCIS before or during surgery. And they'll be able to determine which DCIS can just be monitored instead of removed because it might lead to a full-fledged invasive cancer.
Yes! So tricky to get your head around.
Thank you for sharing this with us. 🙏🙏
My pleasure
@@estrogendiaries Thank you. I do hope that you are doing well. Blessings🙏
Thank you for your reply. Blessings are very welcome💗🙏 I hope that you are doing well also. Have a nice day.
Thanks so much! Yes, I’m feeling blessed as can be this Christmas.
@@estrogendiaries Let us pray that we have a good 2024 🙏
This is so helpful.
I was diagnosed with DCIS a few weeks ago.
When they did the MRI last week, they were shocked. Altho the mammo & sonogram showed 2cm, the MRI showed 10cm! (Other breast is healthy). He said that this is something that would only be seen on the MRI.
Oncologist/Surgeon said no way they can do lumpectomy.
He said that there is necrosis.
I was going to wait it out because he’d shown me the most recent research on DCIS and said that it shouldn’t be called cancer at all. And that in just 5 years from now, they’ll likely be treating this way different. But, for now, they don’t have enough info to change the standard of care much.
I hate losing my (right) breast.
I play competitive tennis. And from
What I’ve read, this surgery (with reconstruction) really affects your right arm/shoulder!
Can you tell me how long it was before you got back your range of motion/strength in your arm?
Boy! I hope you get this, cuz I don’t see any comments here. And this is very well done and informative.)
I just uncovered the comments. They were piling up, waiting for me to approve! …I had no problems, in fact I’m already shooting a compound bow again, just four months after surgery. I had no radiation tho-that’s what really messes with your function.
Did they remove sentinel lump nodes for testing during surgery?
How many removed?
Yes, for me they took two and they were clean.
Thank you
can you be tested for the growth factor issue? I have a biopsy in about 20 days and will be trying to learn my way around. And thank you so much for doing this youtube.🙂
Yes, absolutely. You'd need to find a doctor who understands and appreciates the need to test. That might be hard. My doctor, Dawn Lemanne in Ashland Oregon was the one who tested mine. She would say that growth factors are like hormones though, they fluctuate from hour to hour and day to day... so measuring them isn't always as helpful as it might seem. The important thing would be to know that they are a possible factor in your story and so I'd say: don't take too long to set a surgery date after your biopsy. Decide now whether you want implants or flat closure, and that way you can take less chances of your tumor growing faster after biopsy. Some day we will rely on circulating DNA instead of needle biopsies. For now we just need to be aware. See my videos on Flat Closure, or read up on the site called notputtingonashirt.com for the best info! Best of health to you. Kathleen
I was just diagnosed with invasive ductal AND lobular carcinoma in the same breast, but this wasn't the problem child that got me in to the doctor... nothing found on the problem side, but this was shocking to me on so many levels. Still feel I'm not out of the woods for that problem side, but now going to meet 3 specialists on Monday to 'determine' a plan (should be interesting to see what they suggest.)
How did it go?
@@estrogendiaries I'm having DMX Jan 3rd and from there, we'll see how the path report comes back for anything they may discover from that. Doing the Goldilocks unless they deem it's not going to work, depending on surgery outcome w/ main surgeon. A little nervous, but I'll definitely check in after I know more. Thank you again for your vids. I do appreciate them.
So glad you can do a Goldilocks!!! I love mine. Did they show you plenty of photos of others they’ve done? If you’re on Facebook there’s a group called Goldilocks SWIM that has lots of photos that may be helpful.
no, as a matter of fact, I didn't see any photos, now that you mention it. Thank you, I'll check in to that group.
@@estrogendiaries
I had lumpectomy on my left breast in 2022. I had DCIS stage 1 estrogen positive reactor. I chose no radiation. Oncologist wanted to put me on aromabase inhibitors. I chose not to them. I’ve been reconsidering them. What is your opinion on this?
I had a very small amount of invasive cancer and a good deal of pre-cancer. I'm still considering taking AI's as I'm just now entering menopause naturally. I would not have taken it prior, and AI's the more effective type of endocrine therapy for my type of cancer (Lobular) so it is a legit option, but the side effects tend to be really bad, so I'm not eager. I'm hoping to get the Breast Cancer Index test done but I may need to pay out of pocket since insurance won't pay until you've been on endocrine therapy for three years. I'll be making more videos about this!
Awesome. This video just scared the sh!t out of me. My pathology report says comedonecrosis 😢
I’m sorry. This diagnosis is still way better than having invasive cancer, but I understand-it’s still super scary.
Thank you!! Can we connect? I had DCIS and it returned 7 years after lumpectomy only. I have so many questions now!
Of course! I’m most often on Instagram @a.breast.cancer.diary
What about hemorrhagic ulcerative necrosis? My research shows this can be caused by surgery, trauma and radiation. I had a surgical biopsy (benign) in exact same place 15 years ago.
Not sure about that condition. Makes sense that radiation would cause lots of cell death though. Necrosis just means tissue death.
Thanks for the informative video! Just wondering if dcis has symptoms? I have daily nipple blood spotting discharge and slightly reverted nipple, but everything looks normal in mammogram and ultrasound. I did a 2nd ultrasound 7 months later to see if there is a change but the ducts looked normal and healthy. They even analysed the blood and couldn't find cancerous cells. Could it be dcis?
My experience says yes, but I’m only a patient, not a doctor. I’d ask for an MRI though-don’t let it go.
@@estrogendiaries thank you 😊❤️
I just got the update from my biopsy. I honestly don’t know what to say. Honestly, over a year ago I lost my mother she died about a year ago, no siblings and no father. I need to go back to the doctors in about five days. And honestly I don’t know what to ask , especially when as far as I know this doesn’t run in my family history. Hate to ask but I need help.
Praying you find all the help and love that you can get! What did your biopsy say?
great video!! i too did a lot of research and my dr said “dont run to Dr. Google” but i learned so much more there.
Yes. Docs don’t like to deal with informed patients. We take way too much energy! 😁
@@estrogendiariesare you taking tamoxifen?can we connect,I don't have Instagram
No, I never had to start endocrine therapy. I’m in Menopause now and my kind of cancer is best treated with Aromatase inhibitors, so I may try them at some point in a low dose.
What are the growth factors and how can we get tested for them? The ones you reference made your cancer grow after the biopsy?
Still lots to learn! HER2 is one growth factor tested in your actual tumor cells, but IGF is another kind of growth factor more new on the cancer scene, and you can test it in the blood. Only functional docs will know to do this, usually, unless you go to a research center. My doc who knew about this is Dawn Lemanne and she has lectures you can find here on TH-cam.
Ofd dx. Thanks for the video!
Sure!
I had my diagnostic mammogram & breast ultrasound this morning. Waiting on my bilateral MRI with contrast…I have shooting pain in my right breast & am BRCA1+…The ANXIETY I feel. (& yes, there’s a lump I can feel. I’m 39, this is terrifying.)
Please know that you are going to be just fine. We have doctors who know what to do. It feels like a giant mountain, but afterward it will look like a small hill. Try to find doctors you can trust and you will be glad you did.
@@estrogendiaries They told me it’s 3B on the BI-RADS scale. I’m waiting on the results from the bilateral MRI. I appreciate your encouragement.
@@estrogendiaries thanks so much for these comforting words. I‘m going to have surgery next week and I am terribly afraid. I don’t know how to find peace again after the traumatic experience that lies ahead of me.
This is a fantastic video. I have DCIS grade 3 involving nipple duct. In my pathology report, there is no way to tell if I have camedonecrosis. I want to preserve my breast and I am unsure whether the only way to treat it is by removing the nipple or by having a mastectomy. Scared…I don’t know what nipple removal looks like (which would help me feel mentally prepared). I also wonder if there is a way to treat it with medication. Thoughts?
This is a question for your doctor for sure, but in most cases I think most surgeons wd say it’s up to your personal preference. If you’re willing to have regular screening for the rest of your life, a lumpectomy is considered safe for almost any amount of DCIS (I had a lot and they were willing to do one on me). I didn’t want screening or radiation and in the end I don’t mind being flat at all, and so I’m making these videos so that others have way more to go on than I did, but we are all different in many ways too. I hope you’ll check out my video about why I chose mastectomies rather than a lumpectomy. Merry Christmas!!!
@@estrogendiaries11:49 11:49
Was diagnosed with DCIS after a lumpectomy for Fibroadenoma, consulted different oncologists, still single and just 30, scared of the side effects of chemotherapy, radiation and even loosing a breast cos who wants a lady with a breast? Been terrifying not knowing how to deal… Finance has also been a thing… don’t know foundations and communities that can help
It’s a tough choice. Just keep an eye on it and be sure it’s not growing. I let mine grow too long and I love my new flatter chest, so the things I feared weren’t as scary as I thought. Look into getting a Goldilocks if you have large breasts-they are safe, quick, easy and can be very pretty!
I was told I have DCIS with Necrosis. And I have ALH and fibrocitic breast. Is necrosis same as camedo necrosis.
Necrosis just means tissue death/dead tissue, so it likely does. Definitely a question for the surgeon.
How would one find out if they had the “growth factor” you discuss here? Is it part of the initial genetic testing done?
No. It's a blood test that you can do--there are lots of different growth factors. Some like HER2 can be found in your tumor. Others like the IGF1 can be found in your blood. My doctor, Dawn Lemanne may have some online talks that address this, but I'm not sure...
I was diagnosed with 2 types of breast cancer. Lcis & dsci. One has to have surgery & one doesn't. Like i have to cut,off my hand,but,i need to watch my fingers.🤔 Stage 0. Both. My doctors are like YOU NEED SURGERY IMMEDIATELY! Im like no,i don't. I wanna watch both of them. But,both have the potential to be higher risks of cancer. I eas told partial breast removal,if i get the "immediately" surgery. I see the surgeon Tues. I have had 4 months of doctors, now i need to start my doctors over.any suggestions? I'll be looking over my paperwork again. THAT was very helpful
Sending my wishes for the perfect fit. I know that the best docs are at cancer centers and university settings normally-the eager learners were the best match for me.
@@estrogendiaries thanks,I think I found the right one. Fingers crossed. They seem to get mad when I start asking either too many or wrong questions. But, I think I have the right one this time. Thanks 😊
What’s the difference between comedy necrosis and necrosis and how can they see these?
That is a good question for our doctors. I don't want to pretend that I'm the expert in this!
How can I find out if I have those growth factors please?
Yes, let me make a video on that! My expert here is Dawn Lemanne, an oncologist here in Oregon. She does lectures on this subject here on TH-cam.
During biopsies, they do immunohistochemistry, in addition to regular staining to assess the presence or absence of other markers and check for morphology. These are often enough evidence to suggest if the cells are cancerous or not. There should not be any guesswork. And if the pathologist and the surgeons or your oncologist had not seen those cells, they would not have recommended lumpectomy or mastectomy. Why did you decide not to follow their recommendation early on?
I never had a biopsy that found my cancer. Lobular breast cancer is invisible in dense breasts until it grows very large. For some of us things aren’t so simple. I almost got a lumpectomy and if I had I would likely still have an undiscovered lesion of invasive lobular in my breast. Mastectomy was the best choice I ever made, it turns out!
I have sever pain and deep tissue itching…anyone else experience this prior to diagnosis? Iv not noticed visual changes. But I do have dense breast tissue so it’s very hard to feel any lumps
I urge you to get medical help. Symptoms are a sign that it may not be the “lazy” kind of DCIS. I had a symptom too-but not pain or itching, and mine turned out to be invasive.
@@estrogendiaries few yrs ago i bled spontaneously out of that nipple. The oncologist said “stop stimulating it” I even showed pictures. She also said I was too young at 38. I lost my childhood friend at 24. They have now told me to see a psychiatrist
Did u get radiotherapy or hormonal treatment before mastectomy
No, I didn’t.
What is DCIS?
It’s a precancer of the milk duct. Very poorly understood and sometimes benign.
Ductal carcinoma in situ an early pre breast cancer which rarely leaves the breast ie non invasive
DCIS is cancer or not? Now I’m confused 😱
That is the million dollar question. You'll find that many doctors disagree on this question. I have videos way back at the beginning of my channel on this. Here are the resources I list there: www.nytimes.com/2015/08/21/health/breast-cancer-ductal-carcinoma-in-situ-study.html?_r=0 (An intro to DCIS and 2015 JAMA research findings showing that DCIS isn't the threat we thought it was)
time.com/4057310/breast-cancer-overtreatment/ (Expose on the Duke University Oncologist who is heading up a new study which compares active monitoring of DCIS instead of surgery)
www.nytimes.com/2010/07/20/health/20cancer.html (Expose about the data found around errors in diagnosis with regard to DCIS)
www.curetoday.com/view/the-dcis-dilemma (patient and doctors stories, combined with the data for "rethinking aggressive treatment")
I had an SMX to my right breast at first. Then they started paying attention to my remaining left breast at the end of all of the active breast cancer treatment I had. They found Atypia. So I was put in that internal waiting room and knew something was up. They did more imaging and had me book an appointment to have a stereotactic biopsy. Keep in mind, I'd just recently finished active breast cancer treatment, including 4 rounds A/C, 12 rounds Taxol, an SMX, and 30 rounds of radiation. I was exhausted, and in no mood to potentially face MORE active breast cancer treatment so soon out from my original issue with the right breast. I knew I was having a Diep flap in the summer. So I insisted they remove my remaining left breast when they did the diep flap. At first, my surgeon did NOT want to grant my wishes but she eventually obliged. Pathology returned with the results, and she said I made the right call. They found Lobular Carcinoma In-situ in the remaining left breast. It's called in-situ, but as you said we CAN develop comida necrosis (not sure how you spell that). I think, in the end, it really DOES have to be OUR choice. There is so much more affected than just medical or physical. This affects us psychologically as well. I say save the WOMAN rather than save the breasts. It ultimately has to be our OWN PERSONAL CHOICE.
Yes. And we each have wisdom guiding us. The more stories I hear the more stock I put in intuition. Science is just hitting the tip of the iceberg in so many ways. It’s good, but it’s just a start.