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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Lumpectomy Only-Treatment for DCIS,

Topic: Lumpectomy Only-Treatment for DCIS,

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Nov 8, 2011 02:17PM, edited Nov 10, 2011 12:30PM by flag_2011_dcis

flag_2011_dcis wrote:

Hi folks! This is my first time posting here. I was diagnosed with DCIS on Aug. 25 and had my lumpectomy two weeks ago. Path report showed 1 cm tumor with clean margins. My BS called it "pre-cancer" or "baby cancer," terms I surprisingly reacted to with resentment. She says she believes nothing more should be done, no radiation or tamoxifen, besides mammos every six months, since the lump was only 1 cm (even though it is Grade 2 with comedonecrosis). I was surprised by this very conservative approach because I had transferred my treatment to her from another surgeon from a different facility who told me (just based on my biopsy path report and mammos) my minimum treatment would be lumpectomy, 6 wks. radiation, and 5 yrs. tamoxifen. My current BS admitted her colleagues in the hospital may actually disagree with her but she is referring me to a med oncologist for discussions about tamoxifen just for my additional info. I am inclined to seek the opinion of one of her fellow BS in the hospital. Before I transferred to my current BS, I was willing to go as far as mastectomy if that was what it took to cut my risk of recurrence to the lowest possible. Now I feel I am not doing enough. Has anyone found herself in a similar situation? If I seek a second opinion, should I inform my BS first or just go make that other appointment?

FYI, I am 51, fully menopaused. I have my surgical results report but I'm not sure I know how to interpret it. It says "The tumor is located 0.4 cm from the closest deep margin." Does that mean the clean margin is 0.4 cm? Is that considered wide? However, another sentence reads "The tumor is located less than 0.1 cm from the deep margin grossly."

I must add that I plan to stay in the same hospital, so if I do get a second opinion, it would be from a colleague of my BS.

BRCA 1 and 2 negative. Family history of both breast and ovarian cancer.

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Nov 8, 2011 03:26PM, edited Nov 8, 2011 04:48PM by redsox

If you are in doubt -- get a second opinion. 

My preference would be a major academic medical center that has multi-specialty conferences or a formal tumor board.  You will need to have your existing surgery reports, pathology reports (and maybe slides) from any surgery and biopsy, imaging reports (and maybe actual images), and other relevant medical records sent to your second opinion doctor(s).  It will be easier if you inform the BS, but a request for your records for a second opinion should be routine. 

Whatever treatment course you decide on, you should have a thorough discussion of your options and the pros and cons of each with appropriate specialists.  For your results the ideal second opinion would include a breast surgeon, medical oncologist, a radiation oncologist, and pathology review. 

Dx 2009, DCIS, Stage 0, ER+/PR+, HER2-
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Nov 8, 2011 05:14PM rn4babies wrote:

I was dx'd with 4mm DCIS with clean margins. My BS thought maybe lumpectomy with Tamoxifen would be all I need due to the small size and wide margins. He referred me to the MO to make the decision. The MO told me without a doubt I'd need radation. (Grade 3 with comedonecrosis). When I questioned him about the need for rads, he kept circling the word comedonecrosis on the path report and said "this is not good, you need radiation." He also said my age (47) and strong family was a factor as well. I agree with redsox, you should get a second opinion. I did not only because my insurance would not pay for me to go anywhere else and based on my own research, I felt that it was the right decision for me.

First DX of DCIS on 7/7/11 of left breast. Lumpectomy with rads completed on 12/14/11. First f/u mammo Feb '12 revealed new primary of 2 areas in right breast IDC and ILC. Lumpectomy on 3/23/12. T/C x4 5/15-7/16. Rads 9/5/12. Oncotype score 27.

Dx 7/11/2011, DCIS, <1cm, Stage 0, Grade 3, ER+/PR+, HER2-Dx 3/6/2012, IDC, 1cm, Stage Ib, Grade 3, 0/2 nodes, ER+/PR-, HER2-Surgery 09/09/2011 Lumpectomy (Left)Radiation Therapy 10/27/2011 ExternalSurgery 03/23/2012 Lumpectomy (Right)Chemotherapy 05/15/2012 Cytoxan, TaxotereRadiation Therapy 09/05/2012 ExternalHormonal Therapy 11/12/2012 TamoxifenHormonal Therapy 09/18/2013 Arimidex
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Nov 8, 2011 05:25PM beacon800 wrote:

I'm no dcis expert, but I have seen studies indicating that surgery only has a much higher recurrence rate than dcis treated with surgery plus radiation.  I don't remember the percentage differences but they were substantial.  Time for second opinion I think :)

LCIS, PLCIS.

Dx 7/24/2009, LCIS, Stage 0, 0/0 nodes, ER+/PR+, HER2-
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Nov 8, 2011 05:43PM OldOakTree wrote:

Flag,

 A couple of things that you also need to take into consideration are the size of the margins and your age.  You say "clean" margins but clean 1 mm margins are different than clean 1 cm margins.  The older you are, the safer it is to go w/out rads.

Have you looked at the Van Nuys scale?  If not, do a search and figure out what your score is.  There are two versions, the newer version uses your age to help determine treatment so make sure you are looking at that one.

Necrosis usually calls for a more aggressive treatement.  I would definitely talk to the oncologist as far as what route to go.  My bs made suggestions to me but he said that is all he can do and told me I needed to talk with an oncologist to make firm plans. 

Diagnosed in 2003 with small area of DCIS, treated with lumpectomy only.

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Nov 8, 2011 06:00PM Cherrie wrote:

My sister had DCIS and I had IDC.  She had a lumpectomy, rads, and is on femara.  She is menopausal.  Her margins were clear and it was 1cm.  She was 56 at the time and is 4 years out.  Family history would make a difference too.  Research and get a second opinion.  You need to feel that you made the best decision for you.  Maybe your doctor could lay out exactly why he/she felt only the lumpectomy was necessary and take that info with you.  Good luck.  You need to be your own advoca

Dx 10/4/2002, IDC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-Surgery 10/21/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Radiation Therapy 11/14/2002 ExternalHormonal Therapy 01/10/2003 TamoxifenSurgery 10/11/2011 Lumpectomy (Right)Surgery 11/12/2012 Prophylactic Mastectomy (Both); Reconstruction: DIEP flap (Both)
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Nov 8, 2011 06:04PM stephN wrote:

My breast surgeon was pretty clear that I needed radiation from the beginning, but when pushed on the details, he said, "I'm a surgical oncologist.  You need to ask a radiation oncologist these questions."

When I asked the RO about tamoxifen, he said, "I'm a radiation oncologist.  You need to ask the medical oncologist these questions."

My point is that the surgeon has his/her specialties and radiation isn't one of them.  I'd definitely make an appointment with an RO for a consultation.  I think you're right to question your surgeon's wisdom on this one.  If the RO tells you you're good, then I'd be more likely to believe it.

Steph 

DX 7/12/11 DCIS w/IDC microinvasion, Stage 1, Grade 3, 0/1 nodes, ER+/PR+

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Nov 8, 2011 06:07PM mari55 wrote:

I would go with whatever the  MO advises.  I trusted my BS and did not get a second opinion from an oncologist 10 yrs ago and now I am stage IV.
Mari

DCIS 1999, R mastectomy. Mets to spine, sternum,ribs,and femurs Jan. 2010 and new primary on left, DCIS, Dec. 2009. I am not afraid of dying, I am afraid of not living

Dx 1/11/2010, Stage IV, mets, ER+/PR-, HER2-
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Nov 8, 2011 07:51PM flag_2011_dcis wrote:

I have just edited my first post to include more information. Thank you, all, for your quick replies.

Dx 8/25/2011, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Nov 9, 2011 09:15AM ej01 wrote:

There is no need to inform you BS that you are getting a second opinion, and no need to hide it either.  It is done all the time and the BS should not be offended.    I would look at your VNPI score and see how that compares to what the BS is saying.  http://www.theeffectivetruth.info/wksht1.html

Even if radiation is not neccessarily recommended, it can probably still reduce your chance of reoccurance, but it it always worth it?  If your chance of reoccurance is at 5% and radiation reduces it to 2.5% do you want to risk the side effects, discomfort, etc for only a 2.5% gain? Maybe the piece of mind make it worthwhile to you, maybe not.  You can talk to a RO before you make your  decision. 

I suspect that if you were premenopausal they would recommend Tamox.  

Dx 7/26/2011, DCIS, <1cm, Stage 0, Grade 3, ER+/PR+
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Nov 9, 2011 12:20PM cycle-path wrote:

It's really a matter of your level of comfort. Radiation cuts your risk of recurrence and so does Tamoxifen. (I believe each cuts the risk by half.) If you're comfortable with that risk -- and many women are -- then be thankful your BS is not pushing rads and Tamox. If you're not comfortable with it -- which is what you're indicating -- then it's not really even a case of a second opinion, IMO, it's a case of finding a doc who shares your feelings about risk.

Many women woth DCIS would be dancing in the street if their BS had said rads and Tamox weren't necessary. It sounds like you're not one of them, and that's ok too.

I am an Uppity Woman. Don't like my posts? Put me on IGNORE.

Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Nov 9, 2011 12:43PM Deirdre1 wrote:

And THIS is where it really gets sticky.. there are new "guidelines" that SUGGEST that the treatment approach to DCIS should be "toned down" and frankly this scares me a bit... I believe that the medical community WANTS to find cancer early BUT doesn't REALLY know what to do with it when they DO find it early...  I think a second opinion is due and then review your own instincts about what you would have done BEFORE you had the dx..  This is a difficult task but if you can reassure yourself from your own voice (from the past) it should help with you decision now.  AND because WE ALL have opinions on this matter in addition to a second opinion I would STRONGLY suggest that you add a therapist to your list of professional so that you can start to hear your voice clearly... The doc's are confussed and it is the doc's that created that confussion... so you are your own best Voice when it comes to this decision.  I hope everything turns out ok and that you have the best results possible!!!  Take good care, Deirdre

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Nov 9, 2011 12:56PM 3monstmama wrote:

Surgeons cut out cancer, oncologists make sure it doesn't come back. 

Go find an Oncologist and see what they tell you.  It may be that you have the recommendation you have because of the grade and size of your DCIS but the best way to feel comfortable is to go get another opinion.  In this case, since the question is post-surgical treatment,  I would be finding TWO oncologists and seeing what they say.

 good luck!

Pain is inevitable. Suffering is optional.

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Nov 9, 2011 01:45PM kayb wrote:

I'm with 3monstsmomma. Surgeons aren't the ones who should make your long term treatment decisions. Medical Oncologists do that. Have a chat with one or two to determine the risks/benefits of radiation and/or hormonal treatment. They tend to follow NCCN guidelines based on what has been clinically proven to have the greatest benefit.

DX May/2010, synchronous bilateral cancer, triple positive

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Nov 9, 2011 02:10PM cycle-path wrote:

Well, with respect, ladies, I think both opinions are wrong. The PATIENT makes the treatment decisions.

I am an Uppity Woman. Don't like my posts? Put me on IGNORE.

Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Nov 9, 2011 07:08PM OldOakTree wrote:

Flag, I'm not real clear on your margins - if they are .4 cm or less than .1 cm.  But either way is not real optimal.  Generally speaking doctors want them to be over 1 cm to avoid rads.  And less than .1 cm usually calls for a re-excision.  Between the margins and the necrosis I'm really surprised that your bs is suggesting you skip rads. 

Surgeons and oncologists have to work together as a team to help your do what you can to bring your recurrence risk down to as low as your are comfortable.  You need both on your team.  I'd stick with having the surgeon do the surgey and the oncologists (medical and radiation) advising you as to what you should do next.  Is the an oncologist in your area who specializes in bc?

Diagnosed in 2003 with small area of DCIS, treated with lumpectomy only.

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Nov 9, 2011 07:37PM flag_2011_dcis wrote:

Hi all,
Thank you so much for all your inputs. I must say when I had my post-op meeting with my BS last week, I felt very rushed. She was about 45 minutes late for my appointment so I knew she was really running behind. Of course, she asked if I had any questions but because of her body language (of looking like she couldn't wait to run out of the room to get to her next patient) I felt pressured then unable to articulate all my concerns and questions. Only when I got home did It fully sink in what she had told me. FYI, I am being treated at the Stanford Cancer Center, considered a world-class facility, which is one of the reasons I transferred here in the first place. Anyone else with experience at Stanford? I will be getting an appointment with an oncologist here soon.

Dx 8/25/2011, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Nov 9, 2011 07:41PM beacon800 wrote:

Me.  I have a lot of experience at Stanford.  Who is  your surgeon? 

LCIS, PLCIS.

Dx 7/24/2009, LCIS, Stage 0, 0/0 nodes, ER+/PR+, HER2-
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Nov 9, 2011 10:12PM redsox wrote:

Stanford should have all the resources you need but you do need to have a real consultation with a medical oncologist and with a radiation oncologist to thoroughly review your situation, your options, the pros and cons of each option, and to give you time to ask questions. 

For me both of those consults were the longest doctor visits I have ever had -- 1 -2 hours each of actual visit time. 

Dx 2009, DCIS, Stage 0, ER+/PR+, HER2-
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Nov 9, 2011 10:37PM, edited Nov 9, 2011 10:45PM by flag_2011_dcis

Hi beacon800,
Were you treated at Stanford or do you work there? By the way, nobody ever mentioned tumor board or Van Nuys index to me. I only heard of those from this discussion group.

Dx 8/25/2011, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Nov 9, 2011 10:51PM beacon800 wrote:

I was treated there and still am. I'm involved with a variety of things there and am familiar with some of the staff. You def need a consult with an oncologist.

LCIS, PLCIS.

Dx 7/24/2009, LCIS, Stage 0, 0/0 nodes, ER+/PR+, HER2-
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Nov 9, 2011 11:57PM jyg wrote:

Please see an oncologist for a consultation about the added benefit for YOU for rads +/- tamoxifen.

BMX 5/26/2011. Incisions revised 6/14/2011 for skin necrosis. Silicone implants 9/28/2011. http://writingtowellness.wordpress.com

Dx 4/27/2011, DCIS, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+
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Nov 10, 2011 12:12PM flag_2011_dcis wrote:

Have just decided that I will seek another meeting with my current BS to address all my questions/concerns as well as meet with MO and maybe RO. Appointments are not very easy to get at Stanford so I don't know when I can get all of these done.

jyg: It seems that we have very similar diagnosis. May I ask what led you to the BMX decision?

Thank you, everyone, for all your inputs. Will welcome more.

Dx 8/25/2011, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Nov 10, 2011 06:11PM awb wrote:

I would go to a medical oncologist for another opinoin. Surgeons do the surgery to remove the suspicious area, but they are not the specialist in treating cancer, the oncologist is.

anne 

"I don't know what the future holds, but I know who holds the future"

Dx 9/5/2003, LCIS, Stage 0, 0/0 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Nov 11, 2011 09:53AM flag_2011_dcis wrote:

Got an appointment with an MO for next week. Still trying to get an appointment with an RO. Thanks, all!

Dx 8/25/2011, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Nov 11, 2011 10:11AM redsox wrote:

Keep at it.  Many of the docs have regular days for specific types of appointments, e.g. patients under treatment, patients on follow-up, new patients, simulations, etc.  The kind of appointment you need, new patient consult, should be scheduled for a long slot and they only do a few in one day. 

Dx 2009, DCIS, Stage 0, ER+/PR+, HER2-
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Nov 11, 2011 10:27AM Chickenpants wrote:

I've just had surgery only for 2.5 mm DCIS & 3 mm LCIS with "negative" margins, so no further surgery at this time, but I did have an MRI this week for both breasts.  Depending on the results of this test, I will know more about recommended treatment - in other words, if I have no further signs of cancer cells, then likely I won't have radiation due to the small size of the lesion and risks outweigh any small benefit gained at this time.  This treatment may saved for a later date where it can be of more benefit.  I had underlying ADH, so even if I didn't have the early stage cancers show up, I am still torn between removing as much risk for future cancer by having a preventative mastectomy and doing absolutely nothing.  That's the gamble.  I may never get breast cancer again and live a full live.  I'm just turning 52 and still premenopausal, so I"m not sure about any hormone therapy recommendations.  The nice thing about my current situation is that it's not an emergency and I have time to look at all of my options.

Dx 12/4/2011, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2-Surgery 09/22/2011 Lumpectomy (Right)Surgery 12/23/2011 Lumpectomy (Left)Radiation Therapy 04/10/2012 External
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Nov 11, 2011 10:36AM flopsy wrote:

Flag,   I have found hat persistence in geting appts pays off.  Be nice but call the office everyday or every other to see if they have any cancellations.   I usually call around 9:00 am because a lot of times they know by then.  

I do not think your BS got good margins if your info you posted is correct.  I would point blank ask her about that and if not satisfied would get another opinion by unbiased DR.   Sometimes it can be hard to find another Dr that will do that but I would certainly try.   I work with BC patients and am a survivor myself and can tell you that you have to educate yourself and be insistent to get what you need!!!!!

Hugs to you andI hope all gets settled and goes well!!!!!

flopsy

Dx 5/3/2010, ILC, 3cm, Stage IIIa, Grade 1, 5/7 nodes, ER+/PR+, HER2-Surgery 05/15/2010 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 06/25/2010 Adriamycin, CytoxanRadiation Therapy 09/08/2010 ExternalHormonal Therapy 09/22/2010 Femara
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Nov 11, 2011 10:59AM beacon800 wrote:

Another suggestion:  since you are in the SF Bay Area, check out Breast Cancer Connections.  This is a free service located in Palo Alto.  They offer Q&A sessions with all kinds of doctors for breast cancer: plastic surgeons, MOs, ROs, you can bring your path report and they will read it and give you some thoughts.  I used this place a lot and got many postive benefits from it.

LCIS, PLCIS.

Dx 7/24/2009, LCIS, Stage 0, 0/0 nodes, ER+/PR+, HER2-
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Nov 11, 2011 11:49AM Sunone wrote:

Hi Flag, 2 yrs ago I had DCIS on the left breast, 9mm, grade 3 with comedo necrosis, I had a lumpectomy (with good margins) and rads, but I met with a MO and RO to determine that. They said because of the high grade and necrosis the radiation was my best bet, in my case lumpectomy and radation would give me a survival rate similar to mx. Now I have just been diagnoses on the other breast with DCIS, this time  4mm, grade 2 with necrosis. Have not had treatment yet, but the BS said that if I chose lumpectomy they would want me to have rads, I believe that is because of the necrosis. She also offered me mx with reconstruction and I have met with 2 plastic surgeons to discuss reconstruction options, but have pretty much decided that for me the lumpectomy is going to be the way to go. Waiting to talk to the BS again today and will definitely want to talk to the MO and RO before deciding if rads are needed this time. Last time I really didn't want to have the rads, but the MO asked me to at least meet the the RO before making a decision. You definitely want to talk with an RO before deciding.

Dx 8/10/2009, DCIS, <1cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR-Dx 10/2011, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+Dx 1/24/2014, DCIS, <1cm, Stage 0, Grade 1Dx 2/12/2014, DCIS, <1cm, Stage 0, Grade 3Surgery 09/08/2009 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Radiation Therapy 10/19/2009 ExternalSurgery 12/02/2011 Lumpectomy (Right)
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Nov 28, 2011 10:36AM flag_2011_dcis wrote:

Just checking back in here. Hope you all enjoyed the holidays. Update: I have met with an MO and an RO, both of whom advised me to seek further treatment, that is, radiation therapy and tamoxifen. Am still considering bmx but will think about everything over the Christmas holidays and decide after New Year's. Thanks all for your inputs! Take care, everybody!

Dx 8/25/2011, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+