Rads for low-grade DCIS
Hi, all. I'm due to start radiation treatment in a couple of weeks. I have DCIS stage 0, low grade. I am 44 years old.
I just read the long threads by women who opted out of rads. I'm really confused about what to do. The doctor thinks I need rads because of my age. I had a lumpectomy with clear margins.
I'm just wondering, how many of you have done rads subsequent to dealing with small, low-grade DCIS with clear margins? How do you feel about your decision? I would welcome any feedback.
Comments
-
Hi. I had thought that everyone who had DCIS would have rads. But, my doc mentioned a couple of new guide lines in treatment. First. Dcis needs to be under 5mm, no necrosis, grades 1-2. Second, and probably most imp. are margins. I believe to enter the no rads zone, margins need to be close to a centimeter. That's tough to do in some cases. Grade one with really close margins may have a higher recurrence than grade 3 with 1 cent. margins. Google the VNPI index. It includes age in the guideline. I was also only 45 at the time, but there rest of the numbers were low, so I was still in the guideline of rads not necessarily making a difference in survival. I am on tamox. It's ok. My risk assessment was about 6% recurrence in 10 years. Rads would lower than to about 3%. Tamox another bit. I went to three rad onc and they all said not a great benefit. Try the tamox. They can't all be wrong, I guess. I live in a large city Chicago. and went to docs from large breast centers. Good luck, Nada
-
HI....I have the same diagnosis, and am just finishing up rads....My BS told me that it was a must after my lumpectomy....I had no real qualms about it....I wanted to do all I could to rid myself of my cancer...When my rads are over, I will have only a five-percent chance of a recurrence. I will not be taking Tam.....It's contraindicated for me.
Good luck to you.....
Sandy
-
I know this decision is very confusing. Every doc seems to have a different idea about the necessity of doing radiation. My radiation oncologist told me that the good candidates to skip rads were: 1. small size 2. good margins 3. not grade 3 and 4. not really young (she initially said old---til I gave her the look)(I am 61)................so, although I had 4 out of 4............she gave me a grade of 2.5 cause of necrosis and felt I was closer to 3).....which endup up at 3 out of 4.............the tumor board at the hospital said I should have radiation, so I did. I agree with Sandy. I wanted to do everything I could to get rid of this. I have also finished my treatments and had no big problems, just little ones easily managed. (redness, fatigue).
Good luck on your decision.
Donna
-
I had DCIS and opted for lumpectomy, radiation and tamoxifen. My bc doctor strongly recommended rads. For me, it wasn't bad at all. Actually, I worked and went for radiation on my lunch hour. Slightly fatigued but no skin reaction to speak of. I have been on tamoxifen for 7 months.
-
A viewpoint from the other side -
I had grade 1 IDC along with my grade 1 DCIS - same small tumor 0.9cm in total. I refused the radiationa after lumpectomy. Also refused tamoxifen and arimidex (age 49 and in menopuase at diagnosis). It's now 4 and a half years since diagnosis and no recurrence as yet. So small, grade 1 DCIS with clear margins - something to think about.
-
I'll just say .. same experience, with me. My diagnosis, August, 2006, 2cm right breast IDC, ER/PR+, HER2-, Grade 1, no node involvement. Cut out, with huge margins.
No radiation, no Tamoxifen, no further treatments.
2+ years, later, totally clear, mammogram.
Although, summer, 2007, I had a left breast, anomoly. The digital mammo on that breast (first ever, the prior ones had been film) found ADH. The MRI, found, nothing. Stereo biopsy, to surgical excisional biopsy, all nothing, in the end.
Totaly clear, No cancer in the left, non-cancer breast. And no cancer, in the formerly right, cancer breast.
My next digital mammo/MRI is December, 2008, see what happens, then.
My experience.
-
My case I feel is similar to yours. I am 46 and they found a tiny area of DCIS I had in July during surgical biopsy due to cluster of microcalcifications spotted on annual digital mammo in June. My DCIS was 1.6 mm in size, clear margins, no necrosis present, cribriform/solid, intermediate nuclear grade. When I met with radiation oncologist, he originally was leaning toward need for radiation treatment. However, after a long discussion of questions and concerns I had he ended up saying he did NOT feel he would recommend radiation treatment provided I was very vigilant about follow up mammograms and MRI's if necessary. I had asked him if I were his wife if he would give me radiation treatments and he said honestly if I were his wife he would NOT treat me. I also had met with a medical oncologist prior to seeing radiation oncologist and he was very emphatic that he did not think with my tiny tumor that I would need radiation or hormone therapy and felt there was a very miniscule chance this would ever return invasively - that I was not to lose sleep over this or worry about it. He, too, said that was the same recommendation he would give his wife. I talked it over with my husband as well and he said if you can only have the radiation to your breast once he thought we should save the "big guns" for if I truly ever have something seriously wrong. I'm sure I would have felt differently about going with recommendation of no radiation if my tumor had been much larger, if my margins had not been clear, if the cells were the more agressive (comedo) type, if my follow up MRI had indicated anything of concern, or if any part of it had been considered invasive.
That's my story . . . don't know that it helps your decision or not. Good luck!
-
Thanks so much for all your feedback. What's really strange to me is that although I've asked, I still haven't gotten a straight answer about how large my DCIS was. I asked for a copy of my pathology report, but it is pretty much unintelligible to me in terms of determining measurements. I know that the cells were non-comedo. I think the margins were fairly large. But I also think the actual area of DCIS was larger than 5mm. Hmmmm.
I have an appointment on Tuesday to get things set up for the radiation. I've already signed the consent forms. But I'm just having these feelings of foreboding. I am on disability for narcolepsy and exhaustion has been a part of my daily life for years and years. It really scares me when I read about people having severe fatigue for months or even years after treatment. I can barely work part-time now. Plus the treatment is for my left breast, so I worry about my heart and lungs. Ohh, I hate having to make all these decisions. I realize I'm lucky that it's DCIS rather than invasive cancer, but this roller-coaster ride is crazy! Before my lumpectomy I was worried that I should be having a mastectomy, now I'm worried about overtreating.
Oh, well. Thanks for all the helpful feedback, and best of luck to you all.
-
Hi my Dr. want's to put me on tamoxifen, any side effects?
-
Hi Everyone,
I'm 45 and having my lumpectomy (DCIS--grade 2/3, approx. 1.2 cm, left side with comedonecrosis) on 9/12 and will not do rads unless the radiation oncologist that I meet with can make a darn good argument for them! I've done a lot of reading and research and have concluded--based on MY unique history and circumstances--that the potential negatives with radiation outweigh any slight advantage they might provide against recurrence. Like you, readheadace1, I worry about overtreatment as much as undertreatment.
My breast surgeon was recently rated #1 in my area by his peers (he was the one they said they would go to or send their loved ones to) and told me I might not needs rads based on the results of the lumpectomy--if he can get good clean margins. I was surprised to hear him say that because I had read that rads are "standard," but was happy that he wasn't of the immediate mindset that all DCIS requires rads. I read a study recently that said that if the margins are at least 10mm (which I think is equivalent to a cm), then radiation after lumpectomy doesn't provide a significant advantage. Another study showed that 75% of women with lumpectomy only had NO recurrence in 10 years (compared to 85% with no recurrence for those that did rads).
As I'm sure you've read on other threads, treatment is such a personal decision and depends on lots of factors. I think it's beneficial to read about the experiences that others have gone through but ultimately each person's decision is uniquely their own. My best to you--and all of us--as we work through these decisions!
P.S. No tamoxifen for me either!
-
I had basically the same diagnosis as you. I was diagnosed last year at 50 and pre-menopausal. I did lumpectomy and radiation. The radiation was not that bad and my surgeon said the lumpectomy along with radiation was as effective as masectomy in my case. I tried tamoxofen for 6 months and couldn't stand the side effects. My onc said he was ok with me getting off of it with the type of cancer I had. It's hard to know what to do. You want guidance but they seem to leave the decisions up to us.
-
Hi to you!
I had a similar situation and did do the rads. I was 55 at the time,little knowledge of bc as only one maternal aunt had experienced issues. Mine was discovered as microcals on a routine, yearly mammo. I had lumpectomy and mixed reactions abt the rads.I was so delighted that the radiologist saw shadows and encouraged more films as mine was very early.
Three yrs later(come Oct of this yr),I have had very few side effects. The rads onc(I go to a large cancer ctr in my city)met with me and he suggested rads and did not really offer other options. Two of the three med personnel(with whom I dealt) said no rads.Although, then,I was not as familiar with the questions that I probably would ask now. I had non-comedo and low grade,wide negative margins and less than 3mm of DCIS and in only one area. However,I did have hyperplasia and ADH that was found in the stereotactic biopsy. Iam presently taking Arimidex as uterine cancer has been in my family history. Is Armidex the best med..that I am not sure abt? I still see a med onc every six months and will for probably five years,acc to my current dr.
So,bottom line would I do it,again? Probably so...although,I have let it go and cannnot second guess my choices now. However,you are so fortunate to be here and getting great opinions and suggestions for questions. I did not find this site until at least six months after all treatments were completed. I kept reading and re-reading and trying to make cases fit mine. I don't know if you do that,but I constantly read everything I could and worried.However,as time has gone on,the anxiety has lessened in many ways and meds have helped me. I found that the rads onc did not encourage questions rather answered them. Now,I would be more informed....20/20 hindsight!
One thing I have found with DCIS is that there are so many opinions and so many different types of DCIS. As Shirl said,they do leave the choices out there and we,patients,must decide which are the most appropriate treatments and that is challenging. JMO
Best to you! I empathize as I know how I felt as I made up my mind and actually found this site in the middle of a night when I was Googling DCIS. It was a real blessing! I hope that things go well for you.
Iris
-
I am freaking out trying to make this decision, I went to my set up appointment today and signed the consent forms to begin 6 plus weeks of radiation on my left breast next week. I had two surgeries this summer to remove microcalcifications(first) and then clean the margins.
Here is my final diagnosis:
DCIS (comedo/solid type with intermediate nuclear grade)
DCIS is 1.5 cm maximum dimension, involves about 6 of 31 sections and extends to medial and ,<1>
estrogen 50% positive
progesterone 5% negative
HER2/neu negative
I've been reading the different posts on this site and I am just getting more confused.
My surgeon didn't seem to think that it was a choice, but that I had to do it and so did my radiologist.
But I still feel completely unsold and that it is overkill.
It is all complicated by the fact that my Mom has been in treatment for Lung cancer for the past year and all of her treatments have been unsuccessful and debilitating and I have little faith in all of this.
Could anybody let me know from my diagnosis if they think it would be wise to skip it ? I think that I shouldn't do it and feel stupid for going through the set up and getting the tattoes...the nurse told me if I really didn't wantt to do it, to not go through the set up as it is very expensive and insurance will only pay for it once, and now I've gone and done it.
I feel so pressured into having the radiation, and I have no one in my life supporting my decision not to do it. -
Hi Ellen58,
I know how you feel...I have been freaking out about it too. You might want to check out the rather long discussion thread in the Radiation necessary in an early stage cancer forum. There are lots of studies linked and referenced there that may help you. I did a lot of research on the Internet and while most studies do show that radiation can be beneficial compared to lumpectomy alone, the statistical difference is to me, not that significant in many cases. Most of the studies also don't say whether or not they controlled for any other variables that might influence likelihood of recurrence (like diet/nutrition, weight, alcohol consumption, family history, etc.). There are other variables that can be considered, and I'm making my decision based on my unique set of variables.
It is a personal decision, and it is ultimately yours. It IS a choice and for some it's the right choice and for some it's not, and in many cases we probably don't know for sure what the absolute best course of treatment is. I don't guess I'm being that helpful...sorry! Even though I'm pretty resolved NOT to do rads, I still find myself wrestling with the issue and whatever I ultimately choose to do I'll still have some nagging doubt about whether it was the "right" thing to do. All I can do is be as informed as I can, ask questions, get second opinions (or third ones) if I feel I need them, and then be at peace with what I decide.
I wish you and all of us the best!
P.S. From reading lots of posts and studies, it seems like there is a lot of variety in how doctors deal with DCIS. My surgeon is very conservative in that he does not push rads, does not do sentinel node biopsies for DCIS, and works to do breast conserving surgeries if at all possible.
-
P.S.S. The link in the post above takes you to the LAST page of the discussion thread. Hit page 1 to go back to the beginning if you want to read them all.
Gayle
-
Thanks, gayle, I just went through all the pages and feel sick to my stomach with dread about making this decision. I am supposed to go back on Wednesday to begin, but think I'll go get a second opinion instead.
Do you know why they don't offer all women a position on their stomachs for the treatment if it eliminates the effect to the other organs ? -
I'm 46,pre-menopausal and diagnosed with DCIS (4 mm,intermediate grade,ER +) in April.I had a re-excision in July for wide margins in July . I underwent accelerated partial radiation (twice a day for 5 days) with very few effects. The 30% local recurrence rate was not acceptable to me and I wanted to do everything possible to KILL any stay cells.
It did take a 2nd opinion with a radiation oncologist to get the treatment plan sorted out. My initial surgeon told me that with DCIS,you have plenty of time to get the information you need to make decisions.
I wish you the best,
Mary
-
Ellen,
I haven't met with a radiation oncologist yet. My surgery is on 9/12 and they'll send me to talk with the RO after I have my surgery. So...I don't have an answer to the positioning issue! The potential harm to other organs is a concern for me too. I don't want to have a "treatment" that ends up doing more harm than good.
If my surgeon gets the bad spot (not even a lump yet, just a "lesion") out with good margins, he feels that not doing radiation is absolutely OK in my case. I have NO family history and no other risk factors. Someone with a different history and other risk factors might choose to do radiation...it is such an individual decision.
-
Thanks to louishenry for suggesting the VNPI worksheet. I filled it in & the results agreed with the info I got from the radiation oncologist I just met with, which for me was to have radiation. Here's a link: http://poptop.hypermart.net/wksht1.html If you have your pathology report from your lumpectomy, you'll be able to fill it out, then click at the bottom for the "VNPI Decision Groups."
-
I don't know if this will help anyone, but to tell the truth decidiing to do radiation was't a big deal for me....It was reccommended to me by my BS, and the rad/oncologist I consulted with thought ti would be beneficial....In fact, he told me that the only bc patients who should not consider rads are the ones who have had a mastectmy...I asked.....
Anyway, I chose to do rads because I wanted to do as much as I possibly could to irradicate this horrible cancer from my body....Every time I was on that table, I envisioned stray cancer cells being burnt to a crisp! That brought me comfort.
And....I breezed through radiation....I finished this past Monday, and I'm doing OK. I do have some fatigue, and itching...skin is still discolored...but I have to admit that the experience was not a bad one for me. I had caring techs and nurses, and a great doctor..I saw him once a week, and he was always pleased with how my body was responding to the treatments.
When we decided on a lumpectomy....the DCIS was small, unifocal and easy to see, since I do not have dense breasts.....we also knew that rads would follow.....While I was concerned about SE's, particularly fatigue and skin issues...I was willing to give it a try.....Since I cannot take Tamox, I knew radiation would be my only shot at preventing a recurrence.
So...Yes...I am glad I made the decision to do radiation for my very early stage breast cancer...I wanted to throw whatever I could at the monster that had invaded my life so unexpectedly.
Sandy
-
I had my lumpectomy on Friday and will not be doing radiation. My actual area of DCIS was very small (only 2mm) and even though it was grade 3 with comedonecrosis, "DCIS is DCIS" and is Stage 0 cancer, as my surgeon says! He got HUGE clear margins (2.5 cm) around the entire tiny DCIS area and told me that in his opinion radiation is NOT necessary and any radiation oncologist trying to tell me otherwise would have a very hard sell!
I had read recently that if a surgeon get margins of at least 10mm (which is equivalent to 1cm), then radiation has NO SIGNIFICANT BENEFIT in the treatment of DCIS. Removal of the area with margins that large is sufficient. My decision not to have radiation was based on the size of the area and margins, my surgeon's advice (and he has been rated #1 in the area for years), and the fact that I have NO family history and no other risk factors. I'm not saying this is the right choice for anyone else, but I do feel that DCIS is often overtreated based on the "standard recommended course of treatment" which may not be right for each INDIVIDUAL.
In my opinion, overtreatment is as bad as undertreatment. While radiation can benefit some, it carries risks of its own and is not a "harmless" treatment. Here's to our health and to making informed choices.
Gayle
-
Gayle, you are so right. While it is up to each individual to decide, my BS recommended no rads and of course the radiology oncologist wanted me to do it - even though he said they probably over radiate about 90% of these same type cases. My BS travels the US going to and speaking at seminars and is so up to date on research, etc. As he explained, in the old days we automatically did a mastectomy for DCIS (low grade, no necrosis, clear margins, etc), then it went to lumpectomy with radiation and now as you stated research has shown that there is no significant benefit to radiation if OUR case.
Another thing to consider is that if I had chosen to radiate and DCIS or an invasive cancer were to return I would have no choice but a mastectomy - where as now I could again have a lumpectomy with radiation.
Liz Montgomery
-
I would love to hear from anyone who is having radiation with silicone implants already in place. Three days after my exchange surgery, I got my path report, showing residual breast tissue under my armpit with DCIS present. Now my md team is recommending tamoxifen for 5 years and radiation treatments. Jeez, if I'd wanted to go that route, I would've had a lumpectomy and avoided 5 months of expanders and 2 surgeries. Anyhoo, that's water under the bridge. I expect to hear from my radiologist today but if anyone out there has made it through rads with implants already in place, I'd love to hear how it went. Thanks so much!!!
-
Hi. I have cohesive gel implants that I had put in 5 years ago (pre dx). I had lumpectomy in Sept and I am just finishing up rads (4 more to go, 33 total). The implants did not affect my rad tx in anyway. I had my right breast radiated and the implant did not harden or change. I hope this helps you.
-
Hi redheadace, what did you decide to do in the end? i see that you had surgery in 2008. like you i had low grade dcis, i was not given good advice by oncologist who said it was my choice so first i decided i did not want to have radiotherapy because i am terrified of local recurrence and once you have had r.t you won't be able to get an implant in case you need to have a mastectomy at a later stage. then i panicked and i booked radiotherapy but i have only done six and i cannot do them anymore. my skin has reacted badly, it is very itchy, all peeling off and worst of all, i have a lot of pain under the axilla. what did you do in the end? are you happy with your decision?
-
Lissa123, I was diagnosed exactly a year ago with DCIS, Stage 0, clear margins, .05 cm. My surgeon told me that radiation was the protocol. I ended up doing 33 treatments and spent 5 months on the sofa with fatigue after completion of my treatments. I am still struggling with brain fog and fatigue. It is less, but I wonder if it will ever go away. Personally, if I had it to do over again, I would not have done the radiation. While research may be somewhat mixed, I think it was way over-treated.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team