DCIS: choosing surgery only, followed by monitoring
Comments
-
welcome thrownforaloop. I’m not sure you will find many who fit your situation for the simple reason that most people who aren’t in some active treatment plan often stop posting. Not saying they don’t exist, just that they probably have less to ask questions about. But there have definitely been people with DCIS who have skipped rads and only done meds and probably more than have only done rads and no meds and every other combination. Everyone’s situation is unique to them and we all have to find what fits our life. So while I am not following the same path as you, I didn’t want to leave your post without a response and hope that someone else will have more direct knowledge for you.
0 -
Hi thrownforaloop.
Welcome to the club no one wants to join. Each case is different and every person has to make the best decision for them. For now I am happy to say the decision for me to do only surgery has, so far, worked out well. I have continued close monitoring alternating mammogram with breast US. Each done yearly, 6 months apart. I was originally told that would continue for 5 years but there has been some discussion about moving to mammo only in 2023. I am perfectly happy to have the reassurance of twice yearly monitoring so we'll see. Were you able to have Oncotype risk assessment for your DCIS? That was what tipped the balance in my case, especially with the MO. Good luck with your decision and future health. In the end the only one that needs to be comfortable with it is you. Blessings, yogamom2
1 -
Hello thrownforaloop ! I responded to this initial post back in 2019 and just wanted to add that I had my annual mammogram in early September this year with nothing suspicious found so I'm now 14 years out from my initial diagnosis in 2008 (at age 46) with a 1.6 mm tiny area of DCIS in left breast. I did not choose to do any additional treatments of any sort and still 'so far so good' at this point. (I've had a few 'scares' since then but turned out to be nothing). Good luck to you!
2 -
I had an occurrence in 2018 of LCIS on my left side. Pre-menopausal I chose a lumpectomy/No meds.
This May of 2022 DCIS Stage 1A. Im peri menopausal. I chose a double mastectomy/No meds. Reconstruction is going very well. I really feel guilty because I sometimes feel like I didn't have real cancer. Some in my family dealt with years of chemo/radiation/meds all of it. Me, so far, I'm getting new boobs.
My worst complaint, this puberty sucks, but at least there's less acne and mood swings.
I have dealt with anxiety and depression successfully with medication. I'm not against meds. I just couldn't stand the thought of being thrown off balance. I'd rather get rid of more body parts than drown in the black wave.
0 -
I'm recently dragonized as DCIS after lumpectomy.
DCIS, nuclear grade 1, present in 2/13 slices, 8mm, ER+/PR+,
Distance from Closest Margin (Millimeters): 1mm
Closest Margin(s): Superior = 1mm
Distance from Other Margins >= 5mm
I am searching for resources to help me be more confident to determine whether I need further treatments such as RT or HT.
Would you share your experience on how to make the decision?
Is there any formula that helps you make the decision?
How did oncologists help you make the decision?
Did you get a second opinion?
Where did you order your Oncotype score test? My surgeon's office did not mention that to me. I am trying to ask them to order one.
Sorry for so many questions
Thanks a lot!0 -
aprilwind, Once again, welcome to the club no one wants to join. If it's possible for you to jump to the beginning of this thread (2019), the first conversations may answer many of your questions. Many of us discussed the journey to our decisions in some detail.
Regarding Oncotype testing....I found it in my research and discussed it with the surgeon after biopsy but before lumpectomy. It was THE deciding factor on the safety of avoiding RT and medication. That said, I had to fight to have the insurance company cover it. They finally did... after it was pointed out that the cost of the test saved them from paying for weeks of radiation and ongoing oral meds. My surgeon and the medical oncologist helped with documentation sent to the insurance company. Both the surgeon and oncologist were comfortable with close monitoring but I got a TON of push back from the RT therapist. I don't respond well to forceful fear tactics, which was really the only argument there. The BS & MO said with my very low recurrence risk and concerns for side effects from RT, they supported my decision.
And there is the bottom line. After all the options and opinions, it is your individual decision. You are the only one that has to be comfortable with it. Post again if you have more questions. You can never ask too many. Best of luck
0 -
kkhart and aprilwind, welcome to the BCO Community! We're so glad you've joined us and hope you find it to be a supportive and encouraging place.
aprilwind, here is an article from our main site on Treatment of LCIS. Hope it helps! Anyway, if you decide to pursue a second opinion, here's more information on how to do that, from the main Breastcancer.org site also.
Good luck! Please keep us posted on how you're doing.
The Mods
0 -
yogamom2, I must say you did a very good job in doing research.
My core biopsy was ADH. After lumpectomy, it upgraded to DCIS; at that time, I learned there was Oncotype testing both from my online research and from my genetic counselor. I also feel that those parameters are very important in the decision making of further treatment such as RT and HT. Not sure whether the time is enough for the surgeon's office responded to my request of Oncotype testing (they seem to be very busy; first they sent out referral of radiation oncologists and genetic counselor, after I reviewed the online recommended list of further specialists to visit, I asked them to send out referral of medical oncologists. I feel that I need to closely follow up with them.)
"My surgeon and the medical oncologist helped with documentation sent to the insurance company." Wow, that's so nice. I hope this can be routine recommended by the medical protocol, so that would save a ton of trouble from patients.
"If it's possible for you to jump to the beginning of this thread (2019), the first conversations may answer many of your questions. Many of us discussed the journey to our decisions in some detail." Thanks for the information! Definitely I will read carefully.
"You are the only one that has to be comfortable with it." You are very correct! I hope the specialists could provide enough information and help me be confident about my decisions.
Many thanks again!
0 -
moderators, thanks a lot for your information!
I read DCIS related articles on this site. I also read other articles regarding seeking a second opinion. I found out that advice that to seek a second opinion out of the patient's current facility is very useful.
However, one thing I found is a huge blocker is that:
Oftentimes the second opinions take time. For example, I am trying to seek a second opinion from Stanford Health Care, it seems those doctors are very busy.
I am hesitant about radiation therapy. It's said, if the radiation therapy is needed, it is better to be within 3-4 weeks (some websites have a greater number, like 6-8 weeks) after surgery. To arrange a second opinion within 2-3 weeks (as it already took 1 week for surgical biopsy) is tough.
Will continute read more on this site to see other's experience!
Thanks!
0 -
Hi again. RE: "My surgeon and the medical oncologist helped with documentation sent to the insurance company." Wow, that's so nice. I hope this can be routine recommended by the medical protocol, so that would save a ton of trouble from patients.
I did have to make a specific request for both offices to "provide a narrative"~ documentation explaining why the test was ordered, the information it provided and how it impacted my treatment options both now and in the future. After speaking with many people, many times at the insurance company, I had a pretty good idea what wording they were looking for to support the claim. And yes, I was very lucky my team was willing to take the extra step to do that. They were great all around, definitely a blessing.
0 -
I must say you did a very good job as a patient.
I just contacted my surgeon's office about to order a Oncotype score test. The nurse replied that she thought what I was referring to is the DCISonRT test, and this test was ordered by the radiation oncologist if they recommend its utilization.
Seems such tests are not a routine practice for DCIS, and it may need to persuade them to order such tests.
0 -
Lots of help right here. This information is provided by Breastcancer.org.
The Oncotype DX Breast DCIS Score Test analyzes the activity of 12 genes that can influence how likely the DCIS is to come back, either as another DCIS or as invasive breast cancer.
Oncotype DX Breast DCIS Score is used: to help doctors figure out a woman's risk of DCIS coming back (recurrence) and/or the risk of a new invasive cancer developing in the same breast how likely a woman is to benefit from radiation therapy after DCIS surgery The results of the Oncotype DX Breast DCIS Score Test, combined with other features of the DCIS, can help you and your doctor make a more informed decision about whether or not you need radiation therapy. Who is eligible for the Oncotype DX Breast DCIS Score Test? You may be a candidate for the Oncotype DX Breast DCIS Score Test if: you've recently been diagnosed with DCIS you're having lumpectomy to remove the DCIS or have had a core biopsy How does the Oncotype DX Breast DCIS Score Test work? The Oncotype DX Breast DCIS Score Test analyzes the activity of 12 genes that can influence how likely the DCIS is to come back, either as another DCIS or as invasive breast cancer. The Oncotype DX Breast DCIS Score Test assigns a Recurrence Score — a number between 0 and 100 — to the DCIS. You and your doctor can use the ranges to interpret your results for DCIS.
Hope that helps.
0 -
yogamom2 , thanks for the information!
I also shared the article with the nurse, such as:
I guess it seems their office's practice is not to order molecular tests; they may defer it to other oncologists such as radiation oncologists or medical oncologists.
I said: The reason I asked for surgeon-initiated ordering is from recommendations of some medical professionals, and other patients' experience. It is recommended to use those tests to tailor individual treatment for breast cancers. In case further treatment is needed, earlier treatment will result a better recurrence and survival outcome.
So definitely surgeon initiated orders can reduce wait time, and consequently giving patients a better treatment outcome.
I am not sure I can convince the surgeon's office. But fortunately the appointment with the radiation oncologists is coming soon, which is 20 days after lumpectomy. Hopefully it will not be delayed much by any tests.
0 -
I decided to do the same as you. Trying to eat healthy and exercise. I also had a low oncotype score. Happy to hear I'm not the only one who made this decision.
0 -
I decided to do the same as you. Trying to eat healthy and exercise. I also had a low oncotype score. Happy to hear I'm not the only one who made this decision.
0 -
Hi everyone on this thread! I believe I am in this club: it's been almost a year since routine mammo lead to dx mammo which revealed microcalcifications in the left breast, which lead to biopsies, lumpectomies, a breast reduction of the unaffected breast, and finally (2 weeks ago) a UMX of the left breast. All along, all pathology showed DCIS, Stage 0, Grade 1, no invasion, no comedonecrosis, and the lymph node (SNB during the UMX) was normal. So per my surgical oncologist, now we do...nothing. No rads, no HRT. I'm fine with all that but I've had some friends express some wonder at the fact that there is no other follow-up planned. I do plan to ask my surgeon in my next (3 mos from now) appt about chances of DCIS occurring in the other breast, but for now I'm happy enough to put that whole question in a box and ignore it. It's been a long challenging year and I feel like pretending it never happened (except when I look at my chest, lol) is something I've earned.
1 -
Hi everyone on this thread! I believe I am in this club: it's been almost a year since routine mammo lead to dx mammo which revealed microcalcifications in the left breast, which lead to biopsies, lumpectomies, a breast reduction of the unaffected breast, and finally (2 weeks ago) a UMX of the left breast. All along, all pathology showed DCIS, Stage 0, Grade 1, no invasion, no comedonecrosis, and the lymph node (SNB during the UMX) was normal. So per my surgical oncologist, now we do...nothing. No rads, no HRT. I'm fine with all that but I've had some friends express some wonder at the fact that there is no other follow-up planned. I do plan to ask my surgeon in my next (3 mos from now) appt about chances of DCIS occurring in the other breast, but for now I'm happy enough to put that whole question in a box and ignore it. It's been a long challenging year and I feel like pretending it never happened (except when I look at my chest, lol) is something I've earned.
0 -
I was diagnosed with DCIS January 25th 2023 had surgery January 18th. I have a lot of calcification in my breast so I had to have a second surgery to take a little more calcification out. The surgeon included a lift for both breast. Waiting for results from second biopsy. My surgeon recommended RT and estrogen blocker. After letting the doctor know i will not have radiation or estrogen blockers. She mentioned to me that one of her colleagues doesn’t recommend RT for DCIS since it’s stage 0. I got a second opinion from a surgeon and decided to just have DCIS removed no radiation or estrogen blocker. I will continue to have mammograms every 6 months for 3 years.
I am going to be 60 years old, very active, drink celery juice every morning, mushroom supplements, green tea with lemon, turmeric supplements, and added more veggies and fruit to my diet.
My abnormal mammograms started in 2018 during premenopausal. Had a needle biopsy 2018 it was benign. 2020 I started drinking celery juice and I also started with estrogen patch and progesterone. I am estrogen positive and progesterone positive but my DCIS never changed while being on hormones. It never changed on mammograms but the radiologist insisted I talk to the surgeon and I decided to get a biopsy. I also had a MRI with no sign of cancer. Usually DCIS can’t be detected from MRI. But cancer usually can be detected from MRI’
2nd opinion surgeon would have just watched the DCIS not recommend surgery.
0 -
Hello,
I am really glad I found this thread! I was diagnosed on 3/21/23 with DCIS, 1.2cm, grade 3 which we only learned of after excisional biopsy (needle core biopsy did not give enough info). I met with an oncologist for the first time today. I am weighing options and also still to meet with a radiologist and a genetic counselor so information will slowly be coming in as more testing info becomes available. I feel like I am gambling in the game of risks and benefits while still trying to cope with the shock of having walked into a cancer center as a patient for the first time.
I am sure hoping that getting my Oncotype score and detailed info from genetic counseling will help me to make more educated decisions about treatment. My current question is, for those of you who have only opted to up your frequency of screenings, what schedule and type of screening do you abide by, and, does your insurance cover it?Thank you!
0 -
Thank you for your reply to my post yogamom2. I appreciate hearing what you have done for monitoring. My oncotype score came back yesterday. It is 19, which my understanding is pretty low risk. The report said 10% chance of a return of DCIS within 10 years, and 5% chance of an invasive breast cancer. Of course those are higher than I want, but I was relatively relieved to see that lower number. My radiologist however thinks that given that my grade is 3, radiation is likely still an important choice for me. He is leaving it up to me of course, but I guess learning that my DCIS onco score is low is not as helpful as I was hoping.
I am curious if anyone else with a Stage 0, grade 3 has opted to forgo radiation. My tumor is ER/PR+ so I also need to make a decision about endocrine therapy. I guess I am struggling to understand why, if we step up the pace of monitoring, all women with DCIS cannot be treated with surgery alone when the chance of something coming back is most commonly as another DCIS when it is early and treatable. What am I missing? I may be cynical, but where does money come into play with recommending treatments to people?
All thoughts, perspectives, and links to available DCIS research appreciated!
Thanks so much for reading my post!
0 -
joce. The standard for lumpectomy with radiation for DCIS probably stems from the statistic that the rate of reoccurrence is than similar to the rate of reoccurrence if a mastectomy
That being said there is research out there that supports not doing radiation in certain situations particularly in older women but with the trend suggesting it could be extended to younger women at well (well if you consider 55 young 🤔) One of the compounds is that the patients are able to take hormones therapy for 5 years Again that is the trade off for some (some people would rather do radiation and No hormones and some hormones and no radiation and the older you get the idea of doing neither So the more recent study started with 55 and older (it’s linked within the Harvard article as compared to the 2004 study which was 70 and olde
0 -
Hi joce, Congrats on your low score. It help may inform your decisions but not make them "walk in the park" easy. For comparison, my score was 7~~ 4% recurrence, 3% invasive risk. I was grade 2, 95% ER/PR+.
If you read through my posts you will see, I got the most aggressive push back from the radiation therapists. Did that have anything to do with the $150 co pay, per visit, above what my insurance covered at the time, for the 5 day a week/ 7 week tx they were pushing? We'll never know. I do know they would not adequately address my concern that if I did have a DCIS recurrence after RT, another lumpectomy would not be an option, pushing me into a full MX instead of more conservative options.
Regarding medication. The hormone blocking drugs carry their own set of risks, as do all meds. It's important to know your family hx & overall cancer risk. My mom had early uterine ca, treated first w/ D&C, then full hysterectomy in mid 40's, my dad- prostate ca in his 70's & my brother testicular in his 30's. All successfully treated, as in life altering but not fatal. When I looked at the risk w/ meds for uterine or endometrial cancers, the percentages were higher than my recurrence risk, which for me was unacceptable.
When I went to speak with the MO, after the push from the RT, I went armed like a PHD student defending a dissertation. I even said point blank "if I'm being stupid about my risk you need to tell me bluntly and explain exactly why". He listened to all my research and concerns regarding multiple tx scenarios and said he was comfortable with intense monitoring given 3 things. My low Oncotype number, the amount of research and reasoning that was done and my family history.
Be your own advocate and make the best decision for you alone, your body, your life. Good luck!!
Research: Google the LORIS project out of Europe, some of the research on DCIS from the UK and newer info from NIH.
0 -
You are not alone in your decision as I have done the same thing. I also had a low oncotype score and decided to have a lumpectomy only. I have changed my diet and will be checked twice a year as you have done. It's a personal choice, you have to do your research and do what is best for you.
0 -
Thank you both for your responses! Yogamom2, if I may ask, why is lumpectomy not an option for a second DCIS occurrence in the ipsilateral breast? I think I have a gap in my understanding there.
I met with the genetic counselor today and just did the blood draw to find out if I carry any genetic risk factors. Given what I know so far, it is unlikely, but another piece of the puzzle in helping to formulate my decision making tree. It's challenging to take things one step at a time when the information and appointments come in a trickle fashion.
I am also going to continue doing my own research and own advocacy, as you have both suggested. I have not heard of the LORIS project so will definitely review that. Thank you for sharing and listening to my angst I have a hard time making minute every day decisions, so this one is throwing me into a different headspace.
0 -
You'll want to double check my info as things may have changed in the past few years but I was told that there were 2 reasons for a full MX with recurrence after radiation.
First, the changes in breast tissue after radiation could possibly make another lumpectomy impossible and could require losing the entire breast to insure removal of all CA.
Second and more likely was that a recurrence, even of DCIS & even if lumpectomy were possible, would certainly require follow up radiation to minimize another greater future risk. Since there is a lifetime cap on the amount of radiation tx one body can sustain, especially near heart & lung, I would have already "played my card" for using RT to lower recurrence risk and full MX would be recommended.
As joey01 wrote there are lifestyle changes that go along with lumpectomy only, with monitoring. Luckily I love to exercise but did meet with an oncology nutritionist to evaluate & make changes to my diet.
Most of us here have lived in that "headspace", that's why this thread is here. Hang in there.
1 -
Thanks for the wonderful people’s wonderful sharing, from which I benefit a lot.
Some updates of my journey and learning.
DCIS Stage 0, Grade 1. Right side.
It is so-called good-risk, or low-risk, DCIS.
I did a lumpectomy and another re-excision surgery.
After that, I decided to skip radiation therapy and hormone therapy.
Note!! The materials address the concern of good-risk DCIS. For non good-risk DCIS, I may have different choices.
The paper below is very good, as it cites a lot of clinical research references:
Breast Cancer, Version 3.2022, NCCN Clinical Practice Guidelines in Oncology
https://jnccn.org/view/journals/jnccn/20/6/article-p691.xml?ArticleBodyColorStyles=full%20html
Good-risk DCIS (!) has a low recurrence rate.
Let’s say it is 10%.
RT after lumpectomy can reduce by about half, 5%.
Hormone therapy after lumpectomy can reduce by about half, 5%.
RT+Hormone therapy after lumpectomy can reduce by about ¼, which is 2.5%.
However, there is no statistical difference in their fatality rate after 10 years.
Reference: Randomized Phase III Trial Evaluating Radiation Following Surgical Excision for Good-Risk Ductal Carcinoma In Situ: Long-Term Report From NRG Oncology/RTOG 9804
Why is that? That’s because the cancer aggressiveness in the recurrence after lumpectomy is less than that in the case of RT after lumpectomy or Hormone therapy after lumpectomy. So the con to have only lumpectomy is that you have a higher risk to do another surgery. The pro is you still have 80-90% chance of no worries of RT or hormone therapy side effects.
Refer to the article: Is invasion a necessary step for metastases in breast cancer?
"However, this does not necessarily imply that that the recurrence has metastatic potential—it could be a marker of aggressivity.""We propose an alternate (parallel) model of breast cancer wherein there is a small pool of cancer stem cells which have metastatic potential from their inception and which disseminate synchronously through several routes—to the breast stroma, to the lymph nodes and to distant organs. Cancer cells which disseminate to the breast give rise to cells which make up the bulk of the tumour mass but these are not the source of the distant metastases."
0 -
Hi there,
They say hindsight is 20 20, I wish I had done double mastectomy at the age of 40.
I was 1st DX with high grade 3 DCIS in 2005 , 40 yrs old 1st mammogram, in my left breast, did radiation 7 weeks of radiation 35 treatments. Had lumpectomy 2x to get clear margins. Went on tamoxifen for 5yrs.
2011 dx with right breast DCIS had same treatment lumpectomy 2x to get clear margins, 7 weeks radiation 35treatments. Was on tamoxifen in 2005 for 5 years.
Fast forward to 2023, and was just dx with right breast cancer again! Oh and to add insult to injury I was also dx with a new primary lung cancer in the same week and just had surgery to remove a 1cm nodule. I am fortunate that it is not a MET, but they they believe since I am a non-smoke , they think but can’t be 100% sure that it’s from the radiation I received to “treat” my DCIS on my right breast back in 2011, which is now BACK !!
So in my opinion , if you are DX with HIGH GRADE 3 NECROSIS DCIS, get a mastectomy.
1
