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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Lumpectomy WITH NO RADIATION- Need to hear from others!

Topic: Lumpectomy WITH NO RADIATION- Need to hear from others!

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

Posted on: Mar 1, 2012 03:52PM

mrkffr11 wrote:

I would dearly love to hear from other DCIS patients that have choose Lumpectomy with out the recommended Radiation follow up as part of the treatment.

I have a lumpectomy scheduled for March 20th and the BS is recommending follow up radiation treatment but I am really oposed to the idea of full breast radiation (left breast) and I just met the radiologist today who warned my that is probably my only option IF I want insurance to cover it.  Apparently a partial breast radiation treatment, which I've seen on these boards, is not likely to be covered and the only trial in my area is a randomised trial which apparently means that I could not control if I were assigned partial breast internal radiation or full breast external. 

The way it was layed out to me was IF I choose no radiation I should strongly consider a masectomy which seems like way extreme to me IF I have a highly localized non invasive type of malignancy.

My path diagnosis should show up below.  I've had subsequent MRI screenings and BS mentioned that there is not a lot of 'activity' around the original biopsy clip which suggest that there probably is no 'mass' no mass has yet to be detected - suggesting to me very molecular malignancy.

Should I really consider removing full breast IF I don't want radiation (I have a long history of smoking and don't want radiation any where near heart and particularly lungs).  

Should I ask my BS to remove more tissue than he normally would during lumpectomy to try to get a wider clean margin to have a better chance of no reoccurance?  Will the cosmetic effect be such that I would be better off removing all breast and reconstruct?

Could really use some guidence from others that have choosen to buck the 'gold standard' of DCIS treatement.

Thank you, M 

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Mar 1, 2012 05:18PM, edited Mar 1, 2012 05:19PM by Beesie

From the mammo and MRI, how large does it appear that your area of DCIS is?  That's a big factor in whether or not your surgeon will be able to deliver wide margins.  

If a lumpectomy can deliver wide margins (ideally 1cm or more all around), that signficantly reduces the risk of recurrence.  Personally if I had a small single focus of DCIS (maybe 1cm or less), if it was not high grade and there was no comedonecrosis, and if I came out of the lumpectomy with really good margins, I would skip radiation.  

Radiation cuts recurrence risk by 50% so the benefit of radiation really depends on how much your recurrence risk is with surgery alone.  With DCIS that is high grade and multi-focal, and if the margins are relatively small (2mm, 3mm), the recurrence risk can be as high as 40% or more (I've seen one study that put the recurrence risk for that type of situation as high as 60%).  In that case (a 40% recurrence risk), radiation would cut the risk to 20% and Tamoxifen (for DCIS that is ER+) would cut it further to around 10%. So obviously there is a lot of benefit from those treatments.  On the other hand someone who has a small single focus of lower grade DCIS and who has good margins after surgery might start off, before radiation, with a recurrence risk that is in the range of 5%.  In that case, radiation could cut the risk to 2.5%; for me, that wouldn't be worth it.

As for whether it makes more sense to have a mastectomy, only you can answer that. Some women choose mastectomies in order to avoid radiation.  In my case, having had a very large (more than 7 cm) area of DCIS that was multi-centric and high grade with comedonecrosis, I had no choice but to have a mastectomy.  If I'd had a choice, I would have opted for a lumpectomy (with radiation if it was necessary). My reconstruction is good, but it's nothing like a natural breast. 

This information about DCIS recurrence rates might be helpful:

http://www.breastdiseases.com/dcispath.htm The VNPI index

http://theoncologist.alphamedpress.org/content/3/2/94/T2.expansion  Older data but still useful.

Radiation Oncology/Breast/DCIS  I'm not a wiki fan but the results of a couple of studies of wide excision alone are quoted. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 1, 2012 05:36PM mrkffr11 wrote:

Beesie,  Thank you for your reply. 

To date from original biopsy and US and MRI no mass can be detected. Original path report shows no sign of invasive cells and shows Sold type, which I've had a tougher time researching.  But it seems to be suggestive of 'very contained' type.  no comedo necrose, I did follow up to ask about evidence of necrose, but I did have 4 calcifications that showed in the duct with mammo and original biospy removed I think two of the calcification - I did see a mammo after the biospy and remember being bummed that 2 were left there. But understand that is normal - will probably be removed during lumpectomy. 

I do understand that the lumpectomy might show a more extensive situation.

I really want to know if 2mm margin that my surgeon will go for as part of standard lumpetcomy treatment will be sufficient IF I opt for no rads.  He is still suggestioning rads because most women who forego rads are either 1) much older - I am 47 and 2) will want 1 cm clear margin according to the Van Eyes scale (have not fully researched this) and BS thinks this might be alot more than whtat needs to be removed and 3) mid grade 2 vs low grade 1.

I don't want to ask the surgeon to remove more than he is comfortable with or more than is 'really' nessecary with this particular dx.

Question for you - hypothetical.  what if lumpectomy could be done in your sit but rads were needed and you were oposed to rads.  Would you still choose mas or more extreme lumpectomy?

Thanks so much again for your help!

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 1, 2012 05:43PM Ysa wrote:

Sorry to intrude on your question but I am kind of interested about the part where they said insurance might not cover the partial breast radiation.  Is that only for a DCIS diagnosis or does it apply to IDC/ILC as well?  And is it just one insurance company or is that general practice? 

I know there is some new controversy about whether partial breast is as effective as whole breast but also know that it is being used a lot so never questioned the insurance aspect.

Doesn't probably help with your decision but this is the first I have heard about any issue regarding partial breast radiation and coverage so it piqued my interest.

Insights?

Courage doesn't always roar. Sometimes, courage is the quiet voice at the end of the day saying "I will try again tomorrow". (Mary Anne Radmacher); one 9 mm and one 7mm mass in right breast, bone mets/lumbar spine, Xgeva started 12/2012

Dx 1/6/2012, IDC, <1cm, Stage Ib, Grade 1, 1/3 nodes, ER+/PR+, HER2-Dx 11/2012, IDC, Stage IV, mets, ER+/PR+, HER2-Radiation Therapy ExternalSurgery 03/23/2012 Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Surgery 03/23/2012 Mastectomy (Right); Prophylactic Mastectomy (Left); Reconstruction: DIEP flap (Both)Hormonal Therapy 05/01/2012 FemaraRadiation Therapy 02/19/2013 External
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Mar 1, 2012 05:46PM redsox wrote:

The Oncotype DX test for DCIS has just come on the market.  At the San Antonio Breast Cancer Symposium last December the first study was presented showing that this measure of the tumor biology clearly provides additional information predicting the risk of recurrence beyond clinical and pathological factors  such as those in the Van Nuys Prognostic Index.  This is something any DCIS patient considering lumpectomy alone without rads should consider having.  A med onc would be the one to order this test and interpret the results.

The eligibility requirements for this study were intended to allow only DCIS patients with disease thought to be favorable and low risk.  In the analysis of the group included in the study the variables of tumor size (larger is worse) and menopausal status (pre- is worse than post-) were still significant along with the DCIS Score. 

SABCS abstract:

http://www.sabcs.org/PressReleases/Documents/Solin.pdf

Dx 2009, DCIS, Stage 0, ER+/PR+, HER2-
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Mar 1, 2012 05:55PM mrkffr11 wrote:

Thank you Red for the suggestion on Onco type.  My BS mentioned this earlier this week and I almost forgot.  I will make a note to follow up with him now that I have talked to the Radiologist and have almost definatively decided that I do not want radiation IF I get clean margin with lumpectomy.

YSA, I really don't know yet.  This info was given to me a few hours earlier at a consult with Radiologist situated at a facility that does not off er the partial breast radiation.  I plan to follow up with my BS for advise since his 'packet of info' had a flyer for brachey type/particial breast treatment and nothing else i.e. no info on whole breast radiation.  This might be because I had already expressed concerns for breast radiation follow up treatment - but somehow doubt the packet was 'customized' for my feelings on the topic. 

I plan to contact my Insurance directly and ask about it.  If I do opt for radiation I will be willing to consider only partial breast or some sort of highly targeted radiation.  I really don't want whole breast radiation at this stage.

 Thank you both for your replies.  Still waiting to hear from those who have actively bucked the recommendation for post surgical radiation.  I know there are some who have but also understand this is totally against all recommendations.  

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 1, 2012 06:33PM, edited Mar 1, 2012 06:35PM by Beesie

A 2mm margin is not the goal of a lumpectomy - I certainly hope that your surgeon is aiming for more than that.  2mm is considered by most surgeons to be the minimum acceptable margin.

But margins are tricky. The problem with DCIS is because usually there is no mass, only calcifications (which are microscopic and can't be seen by the naked eye), the surgeon in effect operates blind.  He knows the area where the calcs are because usually a marker has been left, and sometimes dye is injected into the area prior to surgery.  He removes breast tissue in the marked area, taking out what he believes to be the right amount of tissue to capture all the calcifications, with an acceptable margin - and it's all based on how large the area looked on the pre-surgery films (which may or may not be accurate - there's no way to know until after surgery). Because the surgeon can't see the calcifications or the cancer cells while he's operating, there is no way to know what the margins are until the pathology report is in; in fact there is no way to know if the surgeon has actually achieved clear margins. This is why re-excisions are quite often needed, particularly for those who have larger areas of DCIS, which may not show up completely on pre-surgery films.  So for the surgeon it's a challenge - a good surgeon wants to remove enough breast tissue so that there are good margins (I'd say at least 5mm) but not so much that he removes a lot more breast tissue than necessary, thereby impacting appearance. 

If your surgeon is actually targeting to only have margins that are 2mm in size, that's a problem. And if in fact all that showed up on your films was 4 calcifications, then what you may have is a very very tiny area of DCIS.  If that's the case, a good surgeon should be able to achieve wide margins and you should be able to avoid radiation.

As for your hypothetical question, it's difficult for me to answer because I'm not opposed to radiation. For me, 6 weeks of radiation vs. a lifetime with a reconstructed breast is an easy decision. But I suppose if there was some medical reason why I couldn't have radiation, my answer would depend on the biology of my DCIS.  I would certainly take a wider excision over a mastectomy if the biology of my DCIS was low risk, i.e. not high grade, no comedo necrosis, single focus only.  

Where I am confused with your situation is that you are saying that your surgeon doesn't want to remove more than necessary for your type of diagnosis.  Because of this, you are hesitant to ask for wider margins.  But if you opt for a mastectomy, you would be removing a whole lot more than what would be removed in order to achieve 1cm margins with a lumpectomy.  So if you are concerned about what your surgeon would be comfortable with, why do you think he would be comfortable with your having a mastectomy?  Ultimately this is your decision - not your surgeon's - but it sounds as though your surgeon thinks that a small lumpectomy (with radiation) is all that you need.  So to me it appears quite reasonable to ask your surgeon whether he would be able to try to achieve wider margins so that you can avoid radiation. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 2, 2012 02:05AM mrkffr11 wrote:

YSA,  I just remembered the the Radiologist mentioned that partial breast radiation probably would not be covered by my insurance due to my age - at 47.  Apparently if I am 50+ that might be different.

I do intend to check this option out further.

Good luck

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 2, 2012 02:14AM mrkffr11 wrote:

Beesie, thank you for your reply.

I will talk with my surgeon again on the question of margin size.  His target margins assume that follow up radiation will occur. To safely forego radiation I've been told that 1 cm margin would be recommended.

I have smaller breast.  To remove additional 8 mm might not have a good cosmetic effect therefore mx + recon might be better option cosmetically - If I were concerned with the cosmetic effect - which I am but way lower on the list.  Cosmetic effect does not trump my concern for whole breast radiation - albeit my fears for this treatment may be irrational but they are real to me.

Thanks 

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 2, 2012 06:24AM ej01 wrote:

mrkffr11,  I am 49 and insurance paid for my partial breast radiation.    From what I understand partial breast is less expensive than whole breast radiation, so I would think it would be in the insurance company's best interest to cover it.

Dx 7/26/2011, DCIS, <1cm, Stage 0, Grade 3, ER+/PR+
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Mar 2, 2012 07:28AM, edited Mar 2, 2012 08:20AM by redsox

Insurance companies probably vary in their policies regarding who should be covered for Partial Breast Irradiation (PBI).  There is disagreement on this question but the most accepted guidelines are those described in this paper: 

http://www.redjournal.org/article/S0360-3016(09)00313-7/abstract

Criteria for being "suitable" for PBI include patient age >= 60 years old, no BRCA 1/2 mutation, tumor size <= 2 cm., Stage T1, margins negative by at least 2 mm., no lymph-vascular space invasion, ER+, unicentric only, clinically unifocal with total size <= 2 cm., invasive ductal or other favorable histology, not pure DCIS, no extensive intraductal (i.e. DCIS) component, pathologically node negative, sentinel node biopsy or axillary lymph node dissection.  The article goes on to loosen some of those criteria in defining a "cautionary" group for whom PBI may be considered, as well as a group of patients for whom APBI is "unsuitable". 

Some radiation oncologists are more favorably inclined toward PBI than others and use of these guidelines, especially for the "cautionary" group will vary for different rad oncs and for different insurance companies.

Edited to add:

A major Phase III clinical trial is underway asking questions about the suitability of PBI for patients in multiple strata.  It is called NSABP-B-39, RTOG-0413,  SWOG-NSABP-B-39,  NCT00103181.

This trial is close to completing patient accrual and some strata have already been closed to accrual.  When the results of this trial are reported, the recommendations on PBI for various groups should become clearer.

Dx 2009, DCIS, Stage 0, ER+/PR+, HER2-
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Mar 2, 2012 10:56AM momzr wrote:

I AM a member of the "lumpectomy only" club and here's what happened in my situation.  I had a diagnosis of DCIS -- on left breast in July '08 - this was after a digital mamm which showed a cluster of microcalcifications followed by a lumpectomy/surgical excision.  Mine was a very tiny, tiny small focus area of DCIS (1.6 mm -- Yes that says mm NOT cm - so less than 1/8th of an inch in size) with nothing identified as comedo and no necrosis, considered intermediate grade, and I had clear margins after the surgical excision/lumpectomy.  I have not had any additional treatment besides my excisional biopsy in July '08 which got that tiny area of DCIS out.  At follow up appt. a week after that biopsy, a medical oncologist spoke with me and told me that my tumor was sooo 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.  He actually told me I was not to lose sleep over this or worry about it and he never expected to see me again.   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 time - 46 - and one margin although clear was quite  'close') but ultimately told me after we had a long discussion that I get a pass on this and with my particular circumstances that if I were his wife, he would NOT treat me with radiation.  Therefore, I decided against doing anything more except for close monitoring with mammograms and MRI's as needed. Since that time I have had both follow up digital mamm on my left side in December '08 and a follow up MRI in Feb '09 &'10 and March 2011 as well as a regular annual bi-lateral digital mamm screening on both breasts in June '09,  '10 and '11.  

Just this past June of 2011 after digital mamm they again found a 'grouping' of microcalc's in that left breast.  I again endured another lumpectomy/excisional biopsy (breast too small for stereo biopsy procedure) -- fortunately this time after lumpectomy the results were all benign breast conditions.  Breast surgeon told me to just continue with yearly mamm's and he did not even feel that Breast MRI's are necessary as there can be 'false positives' with them.  So, my next mamm will be summer of 2012.  While I do not feel I am out very far from original diagnosis in 2008, so far, so good in my particular case with no recurrences even though I chose the "no radiation" route.  Crossing fingers that will continue!

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Mar 2, 2012 03:44PM mrkffr11 wrote:

Momzr,  thank you.  Your diagnosis is so far identical as mine as is your age at the time except I'm 47.

I understand the path result of the lumpectomy might show something different but I certainly feel a bit better if my lumpectomy shows that it is indeed a very localized condition with a clear margin I would feel comfortable 'not losing any sleep over foregoing rads'.

In this process I have discovered I do have very 'complex' breasts, and understand completely the false positive for MRI.  My MRI screening pre surgery resulted in having 3 MRI guided biopsies at one time that all turned out as false positive and I think I have found solice with the fact that I will have to now be vigilent with screening and it will likely mean more biopsies in my future. 

It may be totally irrational but because I am loaded with fibro and cystic 'stuff' I really am not comfortable introducing radiation to the whole breast for what today has been defined as the same thing - probably less then 2 mm of naughty, non invasive cells.

In fact, my 3 false positive biopsies cause so much more breast trauma than my original biopsy I full expect to develop calcifications in the opposite breast as a result - 2 were in my non DCIS breast.

I will see what my lumpectomy path report shows and go from there.  I'll keep fingers crossed for you that you continue to show good screenings going forward.

Thanks so much again for sharing, I was really hoping to hear from someone just like you!  Also wanting to hear from others too if there result was not so positive.

All the best, M

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 2, 2012 03:51PM mrkffr11 wrote:

Redsox,  Thank you for your input.  I do intend to research the partial breast radiation option further,  my BS is very much in favor of follow up radiation.

If I read your post correctly I think it very interersting that partial breast option would not be favorable for "pure DCIS" when by almost by definition DCIS is a very contained malignancy.  That leave whole breast radiation the standard for a condition that is, at least at time of treatment, very contained to a specific part of the breast - go figure. 

Thank you again, I will persue this option with my insurance company and see if it is available.

All the bes M 

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 2, 2012 06:21PM SJW1 wrote:

Dear M,

Since DCIS is non-invasive, you can take your time to find a treatment plan that feels right to you. You have many options with DCIS. Standard of care can be a mastectomy, a lumpectomy with radiation or only a lumpectomy. Some women also elect to take tamoxifen. 

When I was diagnosed with DCIS in 2007, I chose to have a lumpectomy only for my DCIS, after consulting with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, who has a consulting service that anyone can use. Using the Van Nuys Prognostic Index, he calculated my risk of recurrence as only 4 percent without radiation. So I opted to omit it, since you can only use it once and the 50 percent risk reduction it provides wasn't of much benefit with such a low risk. Although quite new and as yet somewhat unproven, now there is also an Oncotype DX test for DCIS to calculate this same risk. 

No matter what you decide, you need to feel comfortable with your decision. 

If you would like to hear more of my story or need more info, please feel free to check my website:  http://sites.google.com/site/dciswithoutrads/home

You can also send me a private message anytime and I will be happy to help you in anyway I can.

Hugs,

Sandie

Dx 6/22/2007, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Mar 3, 2012 05:13AM mrkffr11 wrote:

Sandie,  Thank you - yes I have seen some of your post and you might have planted the seed for me to investigate if radiation is even necessary.

When I asked my BS about the VN Index he factored due to my age and intermed grade that I was already not in a favorable position.  I think the biggest factor in my mind will be the margins acheived.

BS thought that 1 cm clear margin was more tissue than I might be comfortable with cosmetically.  I plan to talk more to him about this to determine if there is a margin between the 2mm he goes for (assuming you'll have radiation) and the 10mm that the VN Index recommends.

I have not met with surgeon again, he wanted me to meet with radiologist which I have now done and not any less dubious on the whole breast radiation.  I will look further at partial breast.

 If I have small breast and lumpectomy with 1 cm margin and no radiation is going to make me look funny and wont improve my odds of reoccurance over mas - I might consider that route but it just seems really extreme for somthing today that can only been seen on a microscope and is deemed non invasive and not biologically capable of spreading (understand it can evential grow outside the duct area). 

Love to hear your thoughts on the margins

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 3, 2012 07:30AM, edited Mar 3, 2012 07:31AM by redsox

mrk-

Yes, it seems surprising that pure DCIS is less suitable for PBI than T1 IDC.  I certainly prefer to have DCIS rather than IDC and it is a more favorable diagnosis.  The key is the word "contained".  DCIS by definition is contained within the ducts in the breast.  But it does tend to spread out within those ducts.  On the other hand, a small IDC may occupy a very small area of the breast.  Since PBI treats partial breast the most suitable cases are those with the smallest area of cancer or concern, not necessarily the least aggressive cancers.  For the same reasons DCIS patients are actually more likely to wind up with a recommendation of mastectomy than very early stage IDC patients. 

DCIS is a better diagnosis to have, but not in all respects.

Dx 2009, DCIS, Stage 0, ER+/PR+, HER2-
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Mar 3, 2012 03:32PM miricurt538 wrote:

mrk--                                                                                                                                                                     --   I understand how totally gut wrenching these decisions are.  Several ladies have already spoken to you about the Oncotype DX Breast Cancer Assay that is for scoring DCIS.  This only became available the last of Dec.  There is a simular one for invasive BC that has been done for several years and has been used by many on this site.  You can read about it on  oncotypedx.com.  Be sure to click on the DCIS box on the opening page.

       Although my BC team had recommended Rads for me I had heard about this test and the RO agreed that I could wait to see if they could complete it in time.  (At this time they hadn't even started accepting the requests for tests)  My MO ordered the test and I was one of the first ones the did.  I was getting very nervous about getting the results back in time.  But I did and they showed a score of 18 on a score of 1 to 100 so it was considered low risk for recurrence of DCIS or IBC.  I decided to opt out of Rads but then went home to agonize over my decision for several days.  Several people on here helped me to feel at ease with my decision though and I am happy with it.  I took Tamoxifen for one month and after much searching decided to quit it too.  I wasn't really having much SEs with it (as of then) but the Oncotype DX score was with or without tamox.  So that's the way it stands now.  I would recommend that you consider the testing.  I know it would ease your mind on what to do.    Joyce

Dx 11/21/2011, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+
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Mar 4, 2012 10:08PM akmom wrote:

momzr, can you tell us what your margins were?

My excisional biopsy showed 3 mm DCIS which is tiny, but margins of only 2 mm (the excised tissue measured 6 cm x 3 cm x 1.5 cm) and intermediate grade. I'm 56 years old, so I think the Van Nuys index may put me just below the "recommended for radiation" number if I've worked it out correctly.

I'm waiting for an appointment with the cancer agency and wondering what the odds are that they will recommend radiation.

Dx 2/24/2012, DCIS, <1cm, Stage 0, Grade 2Surgery 02/13/2012 Lumpectomy (Right)Radiation Therapy 04/10/2012 External
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Mar 5, 2012 07:54AM, edited Mar 5, 2012 07:58AM by momzr

akmom  - I don't know how "large" you are in the bustline, but I am quite small at probably not really even an A cup!  In my biopsy where they identified the 1.6 mm small focus of DCIS, my closest margin was 1.3 mm -- as I had said earlier - quite "close".  The total tissue removed in that sample was 3.5 x 2.8 x 1.8.  I guess I sort of looked at it as my margin being nearly as large as the area of DCIS itself.  Also, at least one other time on this board I can remember reading that if under 2 mm some pathologists don't even qualify this as DCIS, but ADH.  Here is a link to a medical article (dated in 2003) about DCIS/ADH:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC314427/?tool=pubmed

So, as I mentioned in earlier post after a long (honestly probably an hour) discussion with radiation oncologist I decided to forgo radiation.  I know that I am at higher risk even if it were just considered ADH, so I do vigilantly go to my screenings every year and will have next mamm this coming summer.  I am now close to a year of no longer menstruating (last period I had was in March of 2011), so I will be interested to see this summer if my breast tissue seems different without those monthly cycles.  By the way I will also turn 50 this summer at the end of June.  I am hoping for less dense as my breasts have always been described as having very dense tissue!

Good luck with your appointment and further decisions!

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Mar 5, 2012 07:56AM ej01 wrote:

To add on to what redsox said "The key is the word "contained".  DCIS by definition is contained within the ducts in the breast.  But it does tend to spread out within those ducts.  On the other hand, a small IDC may occupy a very small area of the breast"  

My radiologist also told me that higher grade DCIS tends to be more contained than lower grade DCIS, so that might come into the equation when determining suitability for partial breast radiation.   

Dx 7/26/2011, DCIS, <1cm, Stage 0, Grade 3, ER+/PR+
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Mar 5, 2012 01:23PM akmom wrote:

Thanks, momzr. I'm already 6 years post-menopausal, and the surgeon said my breast tissue was also extremely dense, so not sure that is likely to change going forward. By the way, I'm average (cup size about a C) and the biopsy definitely left me lop-sided but you wouldn't notice it when I have clothes on.

Thanks for the info, ej01, but now I'm confused :) Is higher grade DCIS more likely to develop into invasive cancer, but lower grade more likely to spread throughout the breast?

Dx 2/24/2012, DCIS, <1cm, Stage 0, Grade 2Surgery 02/13/2012 Lumpectomy (Right)Radiation Therapy 04/10/2012 External
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Mar 5, 2012 05:52PM ej01 wrote:

akmom,  its hard to make sense of all of this together.   If high grade dcis is more contained than low grade, I would expect it to have a lower recurrence rate.   But I read that high grade has a higher recurrance rate and, yes, more likely to develop into invasie.  

Dx 7/26/2011, DCIS, <1cm, Stage 0, Grade 3, ER+/PR+
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Mar 5, 2012 07:48PM Beesie wrote:

I've heard that theory too but I don't know that the facts support it.  High grade DCIS does have a higher recurrence rate and is more likely to become invasive more quickly.  In all my years here, I've run into many women who've had extensive areas of DCIS (myself included) and in almost all cases, the DCIS has been high grade, often with comedonecrosis.  Additionally, the larger the area of DCIS, the greater the risk that some invasive cancer might be found within the DCIS.... yet the presence of microinvasions is most often associated with high grade DCIS, again suggesting that most DCIS that is wide-spread is high grade.

It's been women here who've had a smaller single focus of DCIS who've tended to have lower grade DCIS.  Of course there are exceptions but that's what I've overwhelmingly seen. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 6, 2012 03:30AM mrkffr11 wrote:

My original path report showed 'solid' type DCIS and I had a harder time finding details on this particular part of my diagnosis. 

When I asked my BS about this and my own research he told me that yes solid type is 'suggestive' of a more contained, single focus area of DCIS compared with other DCIS types that can be found as muli focal points with in the ducts. My path report showed mid grade and no mention of necrosis even with calcifications. 

I will be interested to see the path report after the lumpectomy to see if this is same as the original biopsy report.

Thank you, M 

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 6, 2012 05:55AM momzr wrote:

mrkffr11 -- I also hope your pathology from lumpectomy report shows nothing more!  Here is one more link that shows some terms about pathology for breast cancer (DCIS at top of this listing) with quite a few sections including description and info on "solid".  Don't know if it will help you with any additional information or not.  It is dated 2012.  FYI - My own small focus of DCIS had both solid & cribriform types - with NO necrosis.  Here is link:  http://pathologyoutlines.com/breastmalignant.html

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Mar 6, 2012 03:46PM gumshoe wrote:

This is a very interesting topic for me because I at least want to delay radiation.

My DCIS was high-grade. I had a surgical biopsy, a lumpectomy, and a re-excision. The surgeon had hoped that the breast would retain enough fluid to look close to normal even after all the tissue had been removed.

Unfortunately (as mentioned in a previous post), I got an infection and my stitches popped. The breast is now pretty collapsed (I was a 38 C so it's pretty noticeable). It does not look even close to normal and it's really upsetting to me. My surgeon said that a plastic surgeon would probably not be able to improve it because the cavity is not uniform.

I have an appointment at the cancer agency here next week and they are likely going to recommend radiation. However, I don't want to have radiation before I explore my reconstruction options.

So far, I think I am going to want to delay the radiation until I know whether I do have other options. I, too, am very leery of radiation but I think the grade of my DCIS is working against me.

Dx: 1/20/2012, DCIS, 3cm, Stage 0, Grade 3; Tx: lumpectomy, re-excision, skin-/nipple-sparing mastectomy (right), tissue expander placed, tissue expander removed due to skin necrosis, graft taken from thigh to replace lost skin.

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Mar 6, 2012 09:40PM meny wrote:

I'm glad I found this thread.   I also am considering foregoing rads. At least in order to see what other options there are.  I've had a lumpectomy for DCIS - Grade 3 .  It was 2cm.  I'm still trying to figure out the path reports. The original biopsy said high grade, solid type associated with necrosis.  Post lumpectomy report says intermediate to high grade, micropapillary, papillary, solid - high grade - necrosis:present: focal.  clear margins. Not sure how they're measured.  There are 3 measurments for each.  Of the smallest measurement of the 3 for each, the smallest is .04cm .  One thing the radiation oncologist impressed upon me was that whether one has rads or not makes no difference in 'survival'.  presumably because with regular screenings any reocurrence can be caught at an early stage.  Of course the reocurrance might then have to be treated with rads.  Also,  statistics are funny.  Rads cut the risk of reocurrence in half - but I've been told typically over 5 years the risk of reocurrence is 10% no rads and 5% rads.  That doubles over 10 years and at 15 it's 35% no rads to 20% rads.  Another thing that gives me pause is rads supposedly drop the risk of THIS DCIS coming back.  Not a new occurence.  So, when I think about, reduced risk of 5% vs. 10% in the short run (maybe higher than 10? because of high grade?) , no difference in survival, and reduced risk for just this DCIS, I'm inclined to shy away from the rads and their possible side effects - lung issues maybe.  Although they do the procedure in a prone position here which supposedly, since the breast hangs down, it is separated from the organs and so they don't hit the lungs or heart.  (left side).  It's a lot to think about.  I have until the end of this month to decide.  Frankly, surgery frightens me less than anything systemic.  That's just me.  I'd prefer surgery - done and over with - than something slowly debilitating or staying in my system.  I've also been told I can do drug therapy to cut reocurrence as well and will be meeting with that doctor but frankly taking drugs for 5 years doesn't appeal either.   I've become interested in mx with the fat graft reconstruction method, there's a long thread about that here and all things considered, if it were a viable option, it may be something I'd consider - maybe later on.  I just don't want to rush into rads and maybe interject a new worry about lung problems down the line - or heart issues.  And if I do end up opting for mx/recon, rads aren't the best way to go.  Also,  the rad onc. noted that while rads decrease risk of reocurrence, in some instances when reocurrences DID occur after rads they were more aggressive than those without.   There's a study that mentions that.  Also, the BS mentioned that in cases of low grade DCIS they're foregoing rads these days.  But that's not my case - nor yours either, so not so simple.   I did ask the Drs. about the Oncotype DX test.  One said it wasn't proven yet and the other said it was for invasive only.  I will go to the site, check it out and ask again.  

Also, I haven't heard of partial breast radiation.  What is the difference and how is it done as opposed to full? 

Beesie, you are a wealth of information - here and on other threads. Much of it I struggle to understand, still.  I was dropped into this world I barely knew existed not much over a month or so ago and I'm glad I found this place.  It and people like you have given me questions to ask my drs and options to explore, rather than just blindly following whatever I'm told.  My Drs have been very supportive of my need to research and are quick to answer my questions.  I wouldn't know what to ask if not for this place.  This may only be my second post but I've been reading through so much now for a few weeks.   Thank you, all who have posted.

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Mar 6, 2012 10:37PM akmom wrote:

Gumshoe, please post after your visit to the cancer agency - I am very interested to hear whether they recommend rads in your case.

Meny, I agree that this site has helped so much with knowing what questions to ask - and am also grateful to Beesie for continuing to post and answer our questions.

So much to learn!

Dx 2/24/2012, DCIS, <1cm, Stage 0, Grade 2Surgery 02/13/2012 Lumpectomy (Right)Radiation Therapy 04/10/2012 External
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Mar 7, 2012 09:04AM Beesie wrote:

meny and akmom, thanks!  I remember the feeling of being thrown into this foreign world where I knew nothing.  For someone with an 'A' type personality who professionally was always on top of things, it was really disorienting, and frankly, pretty scary. What got me on track were a couple of long discussions I had with the friend of a friend, someone who'd been through it all a few years earlier. I'm happy if I can play a similar role here, directing those who are newly diagnosed to good, reliable data sources and helping with questions for their discussions with the doctors. A bit of information to help you feel a bit more in control. 

meny, 'M' started another thread in the Alternate Forum on this same topic.  There is some additional information there that you might find helpful. Hopefully this link works:  Alternative to Radiation for DCIS 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 7, 2012 11:10AM gumshoe wrote:

Hi akmom - Yes, I will post after my appointment next week. I'm almost certain they'll recommend rads but with my latest complications, I am heavily leaning towards saying "no" at least for now.

Interesting that, although my margins were finally clear, my pathology report did not say what the margins were.

And I third the "thanks" to Beesie!  

Dx: 1/20/2012, DCIS, 3cm, Stage 0, Grade 3; Tx: lumpectomy, re-excision, skin-/nipple-sparing mastectomy (right), tissue expander placed, tissue expander removed due to skin necrosis, graft taken from thigh to replace lost skin.

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