DCIS: choosing surgery only, followed by monitoring

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....

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.

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.

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.

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

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

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

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?

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

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