DCIS: choosing surgery only, followed by monitoring
Hi all, Would love to start a thread for those with DCIS who chose surgery only, no RT or HR meds. I've done a lot of research and am comfortable with my decision based on my pathology and low Oncotype score. I will have monitoring twice a year, once w GYN & mammogram and once w BS & ultrasound, so should anything change it should be caught early. It's an individual choice so not trying to change any minds here, just to connect with others who are following this path. It seems to be a small group......maybe just me??
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Do you really want to spend that much time of your life monitoring it just to avoid radiation? Sounds time consuming and possibly stressful. Regardless you still have another healthy breast so it could always happen again at a later date anyway. I had mastectomy to avoid radiation, but also the idea of good margins seem dubious to me, who knows what else is in there. They can't get every single cancerous cell. How old are you? I was 35, so I have more time for things to go wrong. Not sure what I would do if I was diagnosed at 60 or 70. There is another thread somewhere on here about refusing treatment (ie chemo or radiation). It's all a crapshoot. Many women get radiation and take the hormonal drugs and it still comes back. Whatever you're comfortable with....
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Again....not looking to change minds, mine or anyone else, nor to be judged for what is a personal decision. Looking for others who have a similar very, very early diagnosis, who have done the research, looked at their pathology, family medical history, spoken to their doctors and made the choice that the risk from RT &/ or HT may out weigh the benefits. Thank you for your concern but your journey is not mine and I'm happy you made the best decision in your situation., I'm hoping to find some support for mine.
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Hi Yoga Mom, After much research and thought, I have also chosen surgery to be my only treatment. It has been frustrating defending this decision. I joined a DCIS support group - everyone followed surgery with radiation. The radiologist called the other day to tell me I would have to start radiation next week if I was going to receive treatment. She then reminded me that there is a 2% chance of recurrence every year. I can live with those numbers. I will call her tomorrow to say my decision to not receive rad is final. I am comfortable with careful monitoring. I also am uncomfortable with the risks of RT & HT, since they may not be needed. It is nice to know somebody has made the same decision.
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Thank you for your post,, Tulip. It is nice to not feel alone in my decision, there was a lot of judgement on the road here. Like you I did a ton of research and thought long and hard about which risks I'm willing to accept. I'm hoping if others make a similar decision we can all find some support on this thread. DCIS diagnosis is increasing and research is evolving new treatment recommendations beyond the protocols used for years that treated all BC the same. Will be here if you need to "talk". Wishing us both the best possible outcome!
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yogamom2 - I am one who chose to only have lumpectomy with no additional treatment - Here is my DCIS 'story' - I had my diagnosis of DCIS back in July, 2008 -- left breast -- after a digital mamm which showed a cluster of microcalcifications followed by a lumpectomy/surgical excision. Mine was a very small focus area of DCIS (1.6 mm) with nothing identified as comedo (path report indicated solid & cribriform) NO necrosis present, considered intermediate grade, and I had clear margins after the surgical excision/lumpectomy. I have not had any additional treatment besides my excisional biopsy/surgical excision in July '08. At follow up appt. a medical oncologist spoke with me and told me that my tumor was so tiny he thought there was a miniscule chance it would cause me problems down the road and he did not recommend radiation therapy or hormonal therapy with their associated risks and side effects for my particular situation. I also met with a radiation oncologist who wavered a bit on his recommendation, (seems I was sort of in a 'gray' area on rad treatments mainly because of my age at that time - 46 - and one margin although clear was quite 'close' at 1.3 mm) but ultimately told me after we had a long discussion that I get a 'pass'. Therefore, I decided against doing anything more except for close monitoring with mammograms and MRI's as needed.I have had two additional biopsies since the initial diagnosis of that tiny area of DCIS. In summer of 2011 microcalc's were again found in that same left breast and I endured another excisional biopsy which indicated all benign conditions. In July 2012 a small grouping of microcalc's (less than ten) were again showing up in left breast on mamm and I had a stereotactic biopsy to remove the majority of them which also came back benign. They put a 'marker' in at the time of stereo biopsy and I have had follow up mamm's since then which thankfully continue to be 'stable' in that area. I am at the point now over ten year out from the lumpectomy/surgical excision, of being back to annual checks. My DCIS was a very, very tiny area, but I did not choose to do any further treatment.
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Thank you momzr for sharing your story. Endured is the perfect word for stereotactic biopsy. My pathology is similar to yours although mine was just a few mm larger and I'm 60 so postmenopausal. Curious to know if , since all were benign microcalc if your path would have been the same even if you had followed traditional protocols. Was it ever mentioned? You are comfortable with your original decision? Thanks.
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I am more or less comfortable with my original decision. . . as I mentioned in first post, I have had additional biopsies on that same breast - which did have actual diagnosis in 2008 as DCIS (and a whole "tumor" board of doctors discussed my 'case' back then) - but further biopsies (2011 & 2012) were all "benign", so do I think my "breast cancer journey" is completely done . . . who knows? Do I feel 'stress' each year when mammogram time comes around again - sure. I might have made a different choice originally if I had a larger area of concern, if I had comedo cells, or had not had a clear margin after biopsy - even if it was a "close" one. No one knows what the future holds and I guess I just try to continue to be diligent with my annual mammograms, try to keep a healthy lifestyle - eating as "right" as I can, staying at a healthy weight (I am 5'6" and about 115-ish lbs) and putting it out of my mind for my mental health (until annual mamm weeks rolls around again - then I always forewarn my husband I will be "moody"!) Since my 2008 actual DCIS diagnosis, my own mother was diagnosed with Stage 1 Breast Cancer in May 2016 (she is now 78) - having my Mom also get diagnosed does worry me a little more each year when I go for my screening (she had lumpectomy, short course radiation, and is now taking a five year AI medication to prevent recurrences), but am super happy to be ten plus years out with no further troubles at this point in time.
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I always figure that whatever "research" I've done, the members of my medical team have done a hell of a lot more for years, and have access to information and studies that I don't, PLUS they have the scientific and medical training to know how to interpret that information. To me, rejecting their advice is like trying to argue with an airplane pilot in mid-flight because whatever I googled sounded good.
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Thank you momzr for being open to sharing your story. 10 years healthy is certainly something to celebrate! Wishing both you and your mom a long and healthy future. Most women touched by this disease, whatever stage and treatment they have, probably stress the regular mammo and don't breathe easy til they get the all clear. Reality is whether you have "the full Monty" or elect a more minimal personalized treatment option. there will always be some risk involved. Thanks again for being a ray of hope.
Alice, Thanks for your concern. Your listed diagnosis is worlds away from those of us considering minimal intervention. You have had quite the journey, wishing you healthier days ahead.
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I just have to say, as advocates for our own health, we have the luxury of being able to study our situation exclusively. Specialists have so much to know about so much. I have raised issues with my radiation oncologist and thyroid surgeon that made them pause, because they did not know how to respond. Never minimize our ability to be our own experts about our situations. I respect their knowledge and experience, but also respect that no one cares as much about my wellbeing as me. Partnerships are really the goal, not dictatorship. I might not want to fly the plane, but I get to choose my destination. Yogamom2, I believe there will be more support for active surveillance soon. Wish I chose that route rather than having my completely benign thyroid removed based on two experts' recommendations
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Thanks TB90, Well said. We all need to be educated and informed by our doctors so we can make the best individual decisions in our own personal situations. That doesn't mean there will never be "what ifs" and "if onlys" but at least we have the option to choose the route traveled.
My BS & MO were both very pleased that I came to our treatment discussions well prepared to talk about research and options specific to my diagnosis. They have so very many people to care for at so many stages of disease that it must be difficult to think of all the possibilities outside a traditional protocol. I have been incredibly blessed by both an early diagnosis and being directed to docs willing to be partners, not dictators. It is not something I take for granted. The only push back I got was from the RO who kept pointing out that the nomograph they use moved my recurrence risk from 7% over 10 yrs to 13% over that same time (still pretty good). My other docs noted that my personal genomic score,based on my own tissue, was a far better indicator. My surgeon and I had planned ahead for avoiding radiation by taking a much wider margin for eval (5mm instead of 2) all came back completely clear. The MO said there was such a small statistical advantage to the meds that, given my concerns about the side effects, he was comfortable with active surveillance since I had obviously done my homework and understood there are risks either way. That I believe is the key...risk either way....and which risk you find easiest to live with.
For those that choose full treatment I support their decision as what's best for them. Had my pathology been different, I would heartily do the same. Thank you for lending an ear and support for the road less traveled. Wishing all of us a healthy future.
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I was diagnosed with a small amount of DCIS a year ago. Since the nipple was involved and had to be removed anyway, I chose to go with a mastectomy. Everything went well, my oncologist gave me a clean slate and said I could go back to yearly mammograms and have a breast surgeon examine the mastectomy once a year as well. He also said I no longer needed to see him and I needed no further treatment.
I moved to another state, so I went to a breast surgeon here. This doctor started telling me I should be on estrogen inhibitors because I am at risk for breast cancer, I need to get tested for the BRCA gene, there's a good chance I have it. She gave me a sonogram in her office, then set me up with 4 appointments — gene testing, mammogram, office visit to discuss results of gene test, office visit to discuss results of mri and Mammo. (She also gave me a script for an outside MRI.). I think she's in it for the money. I asked if I could have the gene testing (which is drawing blood) and the mammo during the same visit and i was told No. I'm thinking if I go on hormone inhibitors, that's probably several times a year of office visits.
She also said I had high grade DCIS. I said, no, I had intermediate grade. She said, It wasn't low grade, so it's high grade.
I am finding another doctor. Also, just out of curiosity, how often does one visit the doctor while on tamoxifen? How long does the prescription last before needing a refill?
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Thank you ladies who have shared that you only opted for surgical intervention. You made my day today
Some days, I find my decision a lonely one, even though my family is more than 100% supportive and I do not regret my decision. It seems most do opt for radiation and/or meds after the lumpectomy, at least that is what it seems due to the difficulty in finding stories from women who have opted for the lumpectomy only. And that just may be because DCIS survivors who also only opted for non-traditional treatment may be doing so well that they have moved on with their life and don't want to look back. Good for them! It is even more challenging to find any research data to support the decision for lumpectomy only where they took into consideration diet, exercise, and lifestyle. My oncologist even agreed with that so stated there are new research trials coming related to DCIS and exactly that.
I am not certain why I felt very strongly about forgoing radiation and tamoxifen. Maybe it is because I am a nurse an did TONS of reading and research. Maybe it was God telling me to put all of my faith in Him. Maybe it was because there were too many conflicting articles about over treating this type of 'cancer'. I find it interesting that some sites say it is not cancer but 'could' be a precursor to cancer or just puts one at an increased risk for cancer. Some state that DCIS can remain in that state of non-invasiveness without progression forever. Other sites say it is definitely very early stage cancer. They state they do not know which DCIS cases go on to become invasive, etc. I also had a friend who had stage 4 with mets so had no other choice other than to have a lumpectomy with radiation and chemo, along with tamoxifen. She said if she were someone with DCIS, she didn't think she would do either. Thinking about all of those things made my decision rather simple. Almost too simple, which for me is huge. No decision in my life was ever simple. I always had to weigh and balance everything. Which, looking back, was not a healthy lifestyle.
I have opted for a complete change in diet, lifestyle, and a slew of other natural methods. Most importantly, I am listening to my body and for the first time in my life am putting myself first. Not easy, but I work at it every day. My faith in God is so strong, and though this has been extremely devastating for me, I won't let my faith waiver. I have had to take a look back at all the things that could have possibly caused me to have abnormal cells to begin with. I endured the greatest trauma of my life when I found out my husband was a sex addict after 23 years of marriage. Talk about devastation!! I had absolutely no idea. It will be 3 years ago in June that I found out. Without rambling, we are doing amazingly well today. So, when I found out about my diagnosis 3 months ago, I was not prepared for another round of trauma and devastation. I tend to be one of those people who try to be in control over things in life. Maybe its time for me to surrender and realize that I am not in control ~ over anything.
Please, those of you non-traditional treatment method DCIS survivors, keep us updated on how you are doing.
We women are pretty amazing. We certainly endure a lot so it is nice to have a place to post and share things with others who understand.
God Bless
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Thank you maizey77, That lonely feeling was exactly why I made the original post. You all have helped me feel even more comfortable with my decision, also made after TONS of research. Thank you all so much for sharing, please continue to lift up and support one another, hopefully none of us will feel alone again. Keep posting your journeys. Health and happiness to all of us
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So, I was able to get the mammography of my remaining breast. It came back all good, so I am continuing on with once-a-year examinations, and NO pills
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Congrats TaraLeeOm. So glad you had good news!
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Hi Yogamom and all others who chose or are contemplating lumpectomy only, no rads or hr meds. I was diagnosed in 2003, a week after my 49th birthday, with a very small area of dcis found after calcifications/lumpectomy and was given all of the options. My initial thought was to cut them both off. I suffer from hypochondria and assumed I would be dead in a year from bc. When the doctors told me having a double mastectomy was rather extreme for my small amount of dcis I said, well, then why did you give me that option?? It was a very difficult, lonely and scary time for me and I felt like the doctors were not taking me seriously. Eventually I was able to find a breast cancer specialist who was most helpful and with her guidance I chose to have no rads and no tamox. In June it will be 16 years since the initial lumpectomy and knock on wood, so far so good. I did have cacifications on the other breast about 4-5 years ago and that turned out to be benign, thank God.
I've found that those who fall in this group are small in number. I was lucky enough to find that someone I worked with at the time had a similar diagnosis to mine 10 years earlier and she was of help to me, but other than her and a small number of people on here I know of no one who has gone this route. I was desperate to find others in a similar situation but they weren't to be found. The bc support group I went to (one time only) was full of wonderful, warm, friendly women, but they were talking about rads an chemo, some never even heard of dcis. The NP at my doctor's office said I have someone you need to talk to and she brought in another nurse on staff who was living with stage 4 bc. I felt terrible for her situation (and guilty for having "cancer-lite" when she was going through something so much worse) but that really wasn't what I needed right then. I wanted to hear from others like me and they weren't to be found. I often wonder where the people that I met on this board 15 years ago are now. I rarely visit here anymore, maybe once a year, and I hope that they are doing well and like me are moving on and are busy with other things.
For a small area of dcis, choosing to forego radiation is a reasonable option, I've found you're d***ed if you do, and d***ed if you don't. You just don't know what's ahead but statistics are on your side. I did so much research back at the time, I still have a box in my attic of tons of stuff I printed out way back then. I spent hours pouring over article after article trying to find info relevant to my situation. I haven't researched much on this lately but I'm sure there is much more now. My VNPI score was very good, the only down side at the time was that one margin was .9 instead of the optimal 1.0 but the surgeon said it wasn't worth more surgery for .1 of a margin. A few years later they came through with a revised VNPI and I lost another point because of my age (49) but I still fell in the category of no further treatment just good follow up. Initially I saw my bc/oncologist twice a year and alternated mammo with mri every year. When she retired I saw her NP, then she retired the next next year and I saw another oncologist, he told me I didn't need to see him and didn't need an MRI (which put me into a small panic). I now see a breast surgeon once a year and have a mammo once a year, next year she is adding a us to the work up because my breasts are "extremely dense" (and I though once you hit menopause that was supposed to go away but I guess not). I still worry, I won't deny that, especially since I still have some discomfort in the surgical area after 16 years but my doctor assures me all is okay so I hang on to her words.
I'm wishing good health to all of us and many years of happiness. Stay strong in your decision and don't second guess anything. You sound like a woman who has done your research and came to the right decision.
Oak
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OldOakTree, thanks for that comforting post. I find there are doctors that will put the fear of God into you, and others that are calmer and tell you to just be diligent with your checkups.
Before I had my surgery I met with a plastic surgeon to discuss reconstruction. He was awful! Almost every question I asked was met with, You have CANCER! After he said that about 3 times, I said that actually I have DCIS. And I am not kidding, he said to me,”Do you know how many times I’ve seen DCIS turn out to be cancer after surgery? Three times this month!” And he held up 3 fingers and shook them in front of my face. This, right before my surgery.Needless to say, he was no longer my doctor.
While I am in no way promoting denial, I think we have to consider each doctor individually in regards to treatment. I also did a ton of research before committing to anything. It was also suggested to me to have a double mastectomy, for a small amount of DCIS.
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Hello OldOakTree!
You are a breath of fresh air!!!!! I am so happy for you! I appreciate your post. Thank you for sharing. Your encouragement is so appreciated. Continued prayers for you and your journey ❤️ And, could you continue to check in now and again?
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Yes, congratulations TaraLeeOm. Prayers for continued peaceful and healthy journey. 💕
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OakTree, Thank you so much for taking the time to share your experience! Even all these years later I was having similar trouble connecting to others with my diagnosis and treatment decisions, I can't imagine how difficult that must have been for you. Thanks to all those who post here, especially those who have such long term, positive results. Your support is greatly appreciated!
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hi everyone thankyou for posting.
From my perspective always be vigilant.
The geneneral protocol for my dcis with mastectomy was followup only mammogrgram with surgeon
. No node involvement ment that it was not necessary for AI .
I was told that 99.99% it would not reoccur.this was why i opted for mastectomy as i did not need chemo..
Five years later I had ct scan for liver pain..this showed large cyst ..no worries..
.but a node grwth in lung was noted followed up had it biopsied ....it was metastatic bc
I was told this is a rare occurance..but it does happen.there is just no way of predicting sometimes
It is not standard to have a ct to check..
but bone aches and pain and breathing issues do need to checked out
Keep fit and healthy exercise reduce your weight
All the best
Bright in hope
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bright55,
Sorry you are going through this. My sister was just diagnosed with Stage IV lung cancer, and it is worrisome indeed.
How did they know it was breast cancer that metasticized to the lung and not the other way around. I ask because in researching my sister's condition, I found that 80% of lung cancer isn't diagnosed until it's stage IV, while bc usually gets caught earlier in the mammograms. Also, is your bc in the breast you had removed?
I don't understand why lung cancer is not screened on some kind of regular basis, especially since so many times it's at stage 4
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TaraLeeOm, a pathologist looking at cancerous tissue taken from the lung can identify if the cancer cells are breast cancer cells or lung cancer cells or colon cancer cells, etc.. The cells are unique to their source location.
As for your surgeon who kept pointing out your risk, he may have gone overboard, but it is important that everyone with a preliminary diagnosis of DCIS from a needle biopsy understand that in about 20% of cases the final pathology after surgery will include some invasive cancer as well as the DCIS. The risk is greatest for those who have large areas of DCIS and high grade DCIS, but it's possible to be upgraded to invasive cancer even when there is only a small, low grade DCIS. Everyone with DCIS should understand this so that there are no shocks after surgery, and it's particularly important that those who are considering passing on surgery know this.
With regard to treatment after surgery, the most important thing that anyone reading should know is that there is no 'one size fits all' treatment option. DCIS can range from a single focus that is tiny and low grade to multi-centric that is expansive and high grade with comedonecrosis. Surgical margins can be close (these days anything over 1mm is usually considered an 'acceptable' margin), or wide (anything over 1cm is considered to be an excellent margin). Some diagnoses present very little recurrence risk with surgery alone whereas other diagnoses might still present a significant recurrence risk after a LX plus rads and endocrine therapy (and therefore might warrant a MX).
The other risk everyone with DCIS should be aware of is the risk of a new primary. After whatever might be the appropriate treatment, most DCIS diagnoses present a small (in the single digits) risk of recurrence. But everyone diagnosed with DCIS faces an additional risk, which is the risk to be diagnosed again - a new diagnosis unrelated to the original DCIS. This second diagnosis might be DCIS again or it might be invasive cancer, it could be in either breast, and it could come anytime in the future - in 2 years or 10 years or 22 years. Like all women, our highest breast cancer risk comes during our 60s to mid-70s. Having been diagnosed with DCIS (or invasive cancer - this risk is the same for women who've had a previous invasive cancer), the risk to be diagnosed again is approximately double that of the average woman the same age who has never had breast cancer. Therefore this second risk in most cases is higher than the recurrence risk from the original DCIS diagnosis. Women who choose to take endocrine therapy after their DCIS diagnosis to reduce recurrence also get the benefit of reducing their new primary risk by 50% during the years that they are taking the meds.
All that is not to convince anyone to take hormone therapy (and in fact I didn't) but to make sure that everyone is aware of this second risk and continues to get screening and remains vigilant. If your recurrence risk after your DCIS diagnosis is low enough to not warrant rads or endocrine therapy, your greater risk for sure is to be diagnosed with a new primary breast cancer.
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Beesie, thank you for the education on metasticized cancer cells. So, metastatic cancers don't cause other types of cancers, they just invade other organs. Or, at least not always. Interesting, I never thought of it that way.
As for your surgeon who kept pointing out your risk, he may have gone overboard, but it is important that everyone with a preliminary diagnosis of DCIS from a needle biopsy understand that in about 20% of cases the final pathology after surgery will include some invasive cancer as well as the DCIS.
Of course this risk was pointed out to me— by my oncologist, by my breast surgeon, and by my own research. In fact, my breast surgeon said she's been doing this a long time and she was fairly sure there was nothing else going on with me. I did not need my plastic surgeon speaking to me according to.whatever narrative he created in his own head. For no other reason, it wasn't his job. He made me feel like I couldn't ask him any questions about the reconstruction without him lecturing me on how much at risk I am of having invasive cancer
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TaraLeeOm, yes, you put it well and concisely (concisely is not one of my strengths). Metastasized cancers invade other organs, they don't cause other types of cancer.
Your first PS sounds like a jerk. Of course you never know what might be behind his insistence on making sure you were aware of the risk. Maybe one or more of those 3 cases he'd mentioned required a significant change in reconstruction plans because of the discovery of the invasive cancer and he'd been dealing with very upset patients who had not been adequately informed by their breast surgeons.
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Thank you Beesie for such a comprehensive explanation of both mets and possible recurrence risk. It is vitally important to have all info that might pertain to your personal situation to make an informed decision. Having a doctor willing to take the time to explain ALL options & the risks associated with each , allow you to ask as many questions as needed and be a partner in the process should be the norm- not the exception.
There is a difference between making a well researched, doctor supported decision based on personal pathology & risk factors and avoiding tx that may be appropriate based on lack of info or fear.. Luckily based on my pathology and very low risk , my docs felt I would be safe being closely monitored. When my MO discussed the option of avoiding hormone blocking meds, he said it was frustrating for him when someone with high recurrence risk or invasive disease was determined not to take medication that could potentially save their life in the future.
Best of luck TaraLeeOM in finding a doctor that is a better partner on your journey toward health.
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I was just diagnosed with low grade DCIS stage 0. I have a lumpectomy scheduled for May 8. Surgeon has said no chemo needed but is assuming I will do radiation and hormone therapy. Both of those options frighten me and I’m not willing to deal the side effects if the likelihood of recurrence is low. I will listen to what they have to say after the results are back and make that decision then. I’m glad to see others feel the same.
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HI cmck1973, Sorry you find yourself on this forum. We have all been where you are now.
You will know so much more following your surgery and once you see your final pathology will be in the best position for decision making. It's good to let your surgeon know what treatment you hope to avoid as that may alter the surgical plan somewhat. At my surgical consult I discussed avoiding radiation if possible and the surgeon and I decided on taking a wider margin, 5mm rather than the usual 2mm, to better insure a clear margin. Genomic testing, in my case Oncotype, also gave my doctors more info when deciding on active surveillance.
The reality is, any plans you make now may change once that pathology report comes back. So while it's good to do your research and discuss with your doctors, even they won't have a plan until after surgery. It was that unknown and lack of control that caused me the most stress. Eventually I had to find a way, minute by minute, to set aside what I couldn't control and focus on the things that brought me peace and joy. For now the most important thing is to rest, relax and enjoy yourself as much as possible. Wishing you an excellent outcome and easy path forward. Please let us know how you're doing. Whatever you decide you won't be alone.
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I came across this video and found it very interesting.
https://nutritionfacts.org/video/overtreatment-of-...
I did a little of my own research, and found this, which supports the findings in the video.
Towards the end of the video, he talks about forgoing mammo’s altogether, but I don't think I could that. I would feel like I’m asking for it.Although, it has occurred to me that many women of my mother’s generation never had a mammo in their life and it didn’t come back to haunt them. My mother, her mother, all my aunts....none of them ever had a mammo.
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