DCIS in SITU Stage 0

swimmersmom94

Hi, I would like to hear from others who have a similar diagnosis as myself. It seems I can't really find anyone with my exact diagnosis, I am sure there are many, I am just not finding it. I am 52 years old, after a routine mammogram came back with calcifications increasing from last year, a biopsy in June, I chose to have a bilateral DMX, nipple sparing with immediate reconstruction in September. Exchange surgery in December. Node was benign, remained stage 0 after surgery, clear margins and less than 1 percent chance of it returning. I was ER+ only, genetic testing was normal. Did not have to go on tamoxifen because I was post menopausal, would love to hear from others with similar diagnosis.

jennifertallg

Hi swimmersmom94, similar story to you. Age 41, first mammogram last December and they found calcifications which turned out to be Stage 0 DCIS as well. Had a lumpectomy 2-1/2 weeks ago, was told no radiation needed, but my choice to take tamoxifen or not (still deciding). I don't like all the side effects and since I have a low chance of it returning as well, leaning towards not taking it.

Looking into taking genetic testing as well to see, have to find out if insurance pays for it or not. Was it a blood test or cheek swab to do that?

Take care,

Jenn

Moderators

Welcome to the Community jennifertallg! We are so glad you that you reached out and we hope that you will find support and information here. Stay connected and keep us posted. The mods

swimmersmom94

Hi Jennifertallg, thank you for your reply. First, I am sorry you are going through this. May I ask why they are wanting you to go on Tamoxifen? Were you estrogen positive? My genetic testing was sipping mouthwash and swishing it around in my mouth for 3 minutes, then spitting it out in a cup, was strange. Not trying to scare you, but I have had several friends who ended up with uterine cancer and cirrhosis of the liver from tamoxifen. It's a very personal choice, and I am sure you will weigh all the options but if I can give you some advice, after months of researching, talking to several doctors, friends who have gone through cancer, going to an organic diet, cutting out ALL dairy and keeping stress out of your life will increase your chances by over 80 percent of it coming back. Do I follow this 100 percent, no, but I do treat myself occasionally when I go out to eat, I have what I want. Also, alcohol increases estrogen, I loved drinking but I have cut back quite a bit. I drank socially but I certainly had more than 3 drinks per week. Not trying to overload you but I wish I had all this info when I was first diagnosed.

MelissaDallas

The risk of uterine cancer from tamoxifen is only about 1% (barely statistically significant) and while tamoxifen may contribute to fatty liver in a very low percentage of takers I have never once heard of anyone getting cirrhosis from tamoxifen. Lots of women are prescribed tamoxifen or an AI postmenopausally. Menopause doesn't mean you have no estrogen.

I'd like to see the study on your "organic and no dairy" decreasing your recurrence risk 80%. I have not seen those statistics in any study. Also, only high fat dairy has shown to be an issue in cancer. Low fat dairy has not

swimmersmom94

Hi MelissaDallas, I am in a breast cancer support group every month and a cancer support group. First of all, my Oncologist advised me of the risk of Tamoxifen, 3 percent chance but medical history also plays a role. Secondly, out of the 16 people in my support group, 1 lady who is 32, never smoked or drank, was diagnosed with cirrhosis of the liver and uterine cancer within a year. 2 others had uterine cancer and 1 had a thickening of the uterus. I'm not saying it WILL do this to everyone, I just had first hand knowledge of ones that have developed this. As far as organic, I have several friends who all were told by their drs. that they should go organic if possible. One lady was told 6 months to live, dr. advised her to go organic and its been 4 years since the 6 months. Processed foods, toxins, environment, stress all play a role in our health and I am not trying to preach that everyone should do this, just giving my input. 80 percent? Yes, I still stand by that because of seeing friends who have outlived their diagnosis, one by 20 years after going organic. Also, in this support group the nurse/social worker at my oncologists office who coordinates the group also feels an 80 percent better chance after years of taking care of patients and of those choosing healthier diets. Raw plant based diet has more than just cancer benefits but again, it's a personal choice. Me personally, I think stress played a huge role but there is no way to tell for sure what brought on my cancer. Is that 80 percent in writing, no but if you do some research, you will easily see how an organic diet can greatly increase your chances, I am reading books and talking to doctors and doing my own research, not just what doctors are telling me.

MelissaDallas

Risk of Endometrial cancer from Memorial Sloan Kettering (Less than 2%):

Tamoxifen — The drug tamoxifen, traditionally thought to oppose the action of estrogen, is often used to treat and prevent breast cancer. But despite its anti-estrogen effect on the breasts, tamoxifen works like estrogen in some other respects, such as countering the thinning of the bones, a disease known as osteoporosis. Like estrogen, tamoxifen also promotes endometrial growth, which puts postmenopausal women who currently take the drug (or have taken it in the past) at increased risk of developing uterine cancer. For premenopausal woman, however, there is a lack of evidence that tamoxifen increases the risk of endometrial cancer. The increased risk depends in part on the dose taken and the length of time it's used. The overall risk for developing uterine cancer after tamoxifen use is small, however, with less than one in 500 women who have taken or are taking the drug experiencing this problem. Women who take tamoxifen should discuss the risks and benefits of this drug with their doctors.

I cannot find a single study on the NCI database with any reference to tamoxifen causing cirrhosis.

There are many women here who did everything "right" regarding diet, exercise & body weight who still got breast cancer. If people nelieve that organic or whatever help, they should do whatever they think is right, but there are no statistics to back it up. People got breast cancer all the way back in time, even when everything was organic

ducky179

My diagnosis was similar. Grade 2 DCIS, stage 0. Strong estrogen receptor positive. I'm 42 and I opted for BMX, mostly because of significant family history, despite being personally BRCA negative. Sentinel nodes were clear, but posterior margin was only 1 mm. But only DCIS was found in the mastectomy. I was told no radiation if I had at least unilateral mastectomy, and no tamoxifen if I did bilateral. I still have one more appointment with the oncologist, and I have yet to meet with the genetic counselor (my BRCA testing was done years ago, prior to my diagnosis). I had immediate DIEP flap reconstruction.

swimmersmom94

I hope everything goes well with your appointment. I'm supposed to do a lipo filling but not sure I am ready for that just yet.

swimmersmom94

I didn't ask this question to go back and forth with you, I'm only going by what I was told, and by seeing my friends personally go through this and advice of several doctors as well as what my friends doctors told them. Yes, back in the old days they ate organic, but we can't possibly know everything they ate, smoke, drank etc. I am just telling what I know has happened. Several friends that had uterine cancer were TOLD my their drs. that tamoxifen did in fact cause it. I'm just saying look at all of your options, way the risks and make your own decision. There is NO better way to get advice than from someone who has experienced cancer first hand. I'm referring to my friends who have been through it and what I am researching on diet. I'm sorry that you don't agree, and I am certainly not asking you to, but again, it's just what I have learned.

BarredOwl

Hi:

I would like to note that a person who has received a bilateral mastectomy may have a different risk profile than a person who has received lumpectomy alone, for example, with respect to the risk of ipsilateral or same-breast recurrence. Age and specific pathology findings may affect risk profile. A pre-menopausal 41-year old receiving lumpectomy alone may be in a different position than a post-menopausal 52-year old receiving bilateral mastectomy.

In my personal opinion as a layperson, the decision regarding endocrine therapy is a complex medical decision, which each patient should make in consultation with their expert Medical Oncologist (MO). This is because the MO is familiar with the specific details of their diagnosis and the treatments received, and with their personal risk of loco-regional and distant recurrence or risk of new disease, in light of all applicable factors. The MO should have expert understanding of the available endocrine therapy options, such as tamoxifen or an aromatase inhibitor, their side effect profiles, and the magnitude of the risks of such side effects.

The question entails a complex risk / benefit analysis. Factors such as one's personal risk of local and distant recurrence, risk of new disease, menopausal status, and overall health and presentation, including specific risk factors that may be potentially relevant to the side effect profiles of a specific drug, are all considerations.

Genetic testing results may provide further information that are pertinent to personal risk of new disease, and certain test results could separately warrant consideration of risk reduction endocrine therapy.

Patients should not hesitate to inquire with their MO about the specifics of risk / benefit in their own case.

Anecdotal second or third-hand information about a condition experienced by someone may highlight a risk, but can be an unreliable indicator for many reasons. For example, there is no way to know for certain whether a different drug(s) received by a person, either for treatment of breast cancer or for another co-morbid condition, could explain the condition. Lifestyle risks are not verifiable, and a person may not be willing to share such details. Perhaps a person was at increased risk of a conditions for known or unknown reasons of personal medical or family history.

As indicated by Melissa, anecdotal experience does not speak to the actual magnitude of a risk either in the general case or in the specific case. A person who would like to learn more about (a) serious known drug-related risks of tamoxifen, such as uterine malignancies, stroke, and pulmonary embolism; (b) what is currently known about the specific incidence of each such risk; and (c) whether they have any personal factors which might increase such risk in their case, should consult their medical oncologist in the interest of obtaining current, case-specific expert professional medical advice. Then, the possible benefits of treatment in terms of potential risk reduction must be weighed against the possible risks of serious side effects, in light of one's personal "risk tolerance". In some cases, the potential benefit of treatment may not outweigh the risks. In others, the opposite may be true.

BarredOwl

exbrnxgrl

Well said, barred owl.

Swimmersmom, I don't think anyone wants to go back and forth, or debate with you. I believe that some members were simply trying to give you information available as a result of science based medicine, not advice or anecdotes from others, even if they have had cancer.

Whatever you choose to do, I wish you the best.

swimmersmom94

Thank you, I appreciate that. I basically just wanted to talk to others with a similar diagnosis.

BarredOwl

Hi swimmersmom:

Yes, I don't mean to discourage making such connections. Although my initial diagnosis was bilateral DCIS, I ended up with rather less favorable pathology findings compared to your very nice results.

BarredOwl

---

Age 52 at diagnosis - Synchronous bilateral breast cancer - Stage IA IDC - BRCA negative;

Bilateral mastectomy and SNB, without reconstruction 9/2013

Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

RDA123

hi. My biopsy result was Adh borderline dcis grade 1. Total area is 3cm.,will have lumpectomy. How large was your area? I was told I would probably need radiation if it is dcis. And tamoxifen.

swimmersmom94

Hello, not familiar with Adh, but mine was 3cm dcis in situ and was contained. I did have fibrocystic cysts but all benign. No tamoxifen as I was postmenopausal after doing bloodwork to test. I could have gone on arimidex but my Onco felt with less than 1 percent chance of it coming back, it wasn't worth the side effects. I chose a DMX and didn't have to do radiation but it's a very personal choice.

Emmiejohns

Hello all. I am on Arimidex presently, and for only a month, and I am finding the side effects to be daunting. Hot flashes are very bad, and joint pain, and stiffness. Also, I am having blurry vision (which, until a few days ago, I hadn't even attributed to the Arimidex). New research has shown it can cause the blurry vision. And weakness. I was diagnosed with Myasthenia Gravis, a neuromuscular disease, back in 1993 and have been mostly in remission (with no MG treatment needed for the last three years or so) but am wondering if I am relapsing. All of this after 4 - 5 weeks on Arimidex. I don't even have an appointment with my breast cancer MD until sometime in April. Oh yeah -- another big problem is insomnia. I have been awake since 3:15 a.m., finally got up at 4:30 because I was just lying in bed "wishing" I could go back to sleep. Then I decided to get on the computer. It is now 5:15 a.m., and I will probably just stay up. I am calling my breast cancer doc later this morning. There is no way I will last 5 years on this drug! Has anyone had a similar experience? Are the other AI's any better?

swimmersmom94

Hi Barredowl, so sorry you didn't get a more positive outcome. No matter what our outcomes or diagnosis, we are all in this together. Cancer really does suck, and it really helps to talk with others going through similar situations.

ForLiz2016

Today I received the results of my biopsy. Ductal carcinoma in situ, intermediate grade. My understanding is that this is not necessarily cancer, but pre-cancer cells, that could possibly let loose on my body and become cancer. So, I guess it's like having a ticking time bomb inside your breast, ready to explode! Recommendations are genetic testing and an MRI, thus far. Depending on those results, the surgeon will recommend treatment. This could be anything from lumpectomy with radiation to full bilateral mastectomy. They've already scheduled the MRI and genetic counseling for next week. After I got home and it all started sinking in, I started to wonder about second opinions and should I have one? This lump grew quickly. Do I have time? Should I see an oncologist before I make decisions? If there were positive readings on genetic testing, how will that affect insurance in the future? How important is the genetic testing? I have a Breast Health Navigator from the local hospital who's helping me. She's been great, but she told me there was nothing left from the biopsy to send off for another biopsy second opinion. Do I want to do that again? She works for the hospital locally. I'm sure they don't like to lose patients to the big city hospital. So many questions I don't have answers to and I feel like I really don't have much time. Any advice would help!!! Where do I start?Thnx

Moderators

Welcome ForLiz2016! Glad you found us! While you wait for the advice from others here, you may also want to read through the pages of our main site section on DCIS — Ductal Carcinoma In Situ

Hope this helps answer some of your questions. Let us know how you're doing.

The Mods

VictorsGirl

Hi Swimmersmom94:

I am new to this support group. I was just diagnosed with grade 2, hormone receptive DCIS. It measured 4.2cm and is about 1cm from the nipple. I’m 58 years old and I live in Missouri. I still have to get my MRI on Monday and I will get genetic testing when I decide which surgeon to go with. I am trying to find a surgeon who is a good fit. It looks like I may need a mastectomy because of the location. It is all so new and I am afraid of making the wrong choices. I appear to qualify for the COMET trial study, but I don’t know if that is really a good way to go. I am praying I can have a lumpectomy. A month ago, I woke up in the morning just like any other morning, went for my routine mammogram and by the end of the day my entire life was turned upside down

BWH5

Your story sounds so much like mine. I was diagnosed 11/30/18. I am in the Comet study fur not even a week yet. Active Surveillance group. I am wondering if I should stay or go for the lumpectomy.

I too have a large area. 6 plus cm. Close to nipple. Dr is not sure I can even have a lumpectomy. I do not want a mastectomy. I don't know what to do!

May in ask what you decided to do and how things are now?

Thanks for any advice.

yogamom2

Hi, I was diagnosed by routine mammo in late Nov 2018. Mammo & Biopsy reports state: DCIS - small , well contained, intermediate nuclear grade, cribiform, associated w/ calcifications found on mammogram with no mass or symptoms; biopsy showed 95% positive for both estrogen & progesterone receptors. My surgeon ordered additional testing and said I won't need lymph nodes removed .She is considered a breast specialist in our area and was recently at a BC conference in TX- so fingers crossed. My lumpectomy surgery is scheduled for Jan 8. Oh, tomorrow!

She has said that new research seems to indicate that Tamoxifen dose as low as 5mg may be protective. Current standard dose is 20 mg. I will need follow up w/ MO due to high ER/PR but BS notes depending on pathology and future risk assessment, I should look at the numbers when deciding. Current thought is Tamoxifen lowers risk by about half--so if your risk is 50% that's a big drop. If it's 10%, maybe it's worth avoiding the side effects.

All of this is a personal choice and the research is always evolving. We can only make the best individual decisions with the info we're given at the time. Best of luck to all

TAC2018

Hello ladies I am new to the support group. I wish I had joined last year because I really needed some encouragement and prayers. I can sympathize with you that have been diagnosed with any type of breast cancer or other cancers , as I was diagnosed with DCIS Stage 0 right breast in 2018 . I was blessed that my lymph nodes were all benign and no treatment was recommended or needed . I diid choose to have a bilateral mastectomy done with nipple removal. However , I wasn’t aware the surgeon would remove both nipples as I only had the cancer in the right breast . So, I have experienced much pain with the breast implants , especially the right breast implant . I have a lot of discomfort and fatigue that developed post implants . I then started having difficulty in my range of motion to right arm and this has not improved. I now have far necrosis to my left breast which the surgeon says leave it alone . I have a marble size nodule that is sitting right on top of the left breast implant . It is very frustrating to me and painful. I also have a lot of joint pain and just cannot get back to where I feel I need to be. I am seeking holistic comfort care therapy because physical therapy was useless. I hope you all are doing well . Fight and never give up! Prayers being lifted for you all and hope all goes well if you do requireany treatment plans .

Moderators

Hi there, TAC2018-

We want to welcome you to our community here at BCO! We're so sorry to hear of the issues you've had since your surgery, we know the recovery is sometimes harder than the treatment itself. We hope you're able to find some relief with your new approach, we're all here for you!

The Mods