Margin size + clear margins, make big difference in recurrence?

maize

Does the size of the margins after surgery make a big difference in the risk of recurrence of DCIS?  I know that clear or clean margins are essential, but does the amount of clear/clean tissue taken out (the more the better) make a big difference (or all the difference) in the risk of recurrence?

Extent of excision margin width required in breast conserving surgery for ductal carcinoma in situ 

http://onlinelibrary.wiley.com/doi/10.1002/1097-0142(20010101)91:1<9::AID-CNCR2>3.0.CO;2-E/full

Local control in ductal carcinoma in situ treated by excision alone: incremental benefit of larger margins

http://www.americanjournalofsurgery.com/article/S0002-9610(05)00539-8/abstract 

MamaMia41

I beileve it does make a difference, although it seems each hospital has a different protocol for what is an acceptable margin.  My RO was hesitant to start rads because he thought one of my margins was too close (.5 mm), they like to have 2 mm or greater.  My surgeon thought it was fine because of the location (inferior margin), but after hearing the RO's opinion she agreed that I needed more surgery.  She did tell me that at some hospitals .5 mm is fine; I'm glad they are more conservative at my hospital, because of this more DCIS was found during my re-excision and after I had a clear margin of 5 mm. You should ask your surgeon what the criteria is at your hospital.  Are you going to have rads too?

maize

MamaMia41,

I am debating rads.  Not sure yet. 

I read that before surgery some women insisted on the surgeons getting large margins and that in some cases, if they can get wide enough margins, radiation treatments aren't necessary.

maize

Wide Surgical Margins Best for DCIS

http://www.medpagetoday.com/HematologyOncology/BreastCancer/31758

Infobabe

 maize 

I believe this to be true.  Big margins equals less recurrence.

This is why I skipped rads and no further treatment.

We will know in about 10 years if I am right. 

  

maize

Infobabe,

I read that if the area of DCIS is as small as yours was and is Grade 1, some doctors think it's okay to skip radiotherapy.  Wish I'd known to ask the surgeon to try to get bigger margins.

Infobabe

maize

Remind me of your history.   You do not have it listed.  

What exactly was your diagnosis and what treatment have you had? 

maize

Similar to yours, but between grade 2 and 3 and little larger.  I'd forgotten that the doctor who started this site is a radiation oncologist.  Maybe not the best place to debate pros and cons of radiotherapy.  Seems to offend some people.  Some people on here--not you or Beesie or Shayne or many others--seem to get quite snippy.  The sniping seems to get quite nasty.   Not what I need or want to bother to put up with, that's for sure.  

I don't know if some people ask the doctor to go back in and take wider margins after they've healed or not???

I am so relieved that I will get to talk with another doctor about rads--the place I went to initially apparently only does one type of rads for this.  RO there said rads won't give me any survival benefit, but I do need rads.  It's been helpful to find out from you and Beesie and Shayne and others that there are other options for radiotherapy.  The only other type I'd heard of was Mammosite--and can you believe this--while I was waiting for surgery a report came on the news that the Mammosite wasn't as effective as believed!  The doctor also said that if I get rads now, I probably won't be able to have them again in the event of a recurrence in that breast, so that's something I've been really thinking about. Also, if a mastectomy was needed in the future and reconstruction--some plastic surgeons evidently say that prior radiation makes that very difficult for them. This is all complicated by new health issues, too, so I can't wait to ask the other specialist about what's the best option.

May you have not only 10 years, but many more, with no recurrence or new cancer.

Beesie

You've noticed the snippiness?    My take on it, based on the vast experience of my one Psych course almost 40 ago, is that people who've undergone a particular treatment, especially if it was hard on them, are reassured when others make the decision to have that same treatment. It reinforces that they made the right decision. The flip side of this is if someone questions the need for that particular treatment, then some of those who chose to have that treatment feel challenged and interpret the questions as being directed at them and at their decision.  I think this is what leads to the reaction that SelenaWolf mentioned in one of her posts in this forum a week or so ago, when she talked about how some women are so militant about their choices, and how they run roughshod over others who are trying to make up their own minds about what to do.  I think people who do that are looking for the reassurance that they made the right decision. 

Of course not everyone reacts that way.  Some women who express concern are genuinely worried that someone might be making a decision that could end up being very harmful to the health. In some cases, the need for the treatment is pretty obvious, so passing on the treatment would in fact put the patient at very high risk.  But much of the time when someone questions the need for a treatment, they are either asking as part of their learning process (why is radiation necessary? ah, now I understand!) or they have a diagnosis which maybe isn't so black and white, legitimately putting into question the need for and benefit from the treatment, particularly for someone who is more risk tolerant than most.

Personally I don't have the same concerns or fears about radiation that I see from many others on the board.  If I'd been given the choice between a lumpectomy and rads vs. a mastectomy, I wouldn't have hesitated for a single second in choosing to go with a lumpectomy and rads.  The way I look at it, with rads you have about a 5% risk of side effects (beyond the immediate period of the treatment) whereas with a mastectomy you have a 100% risk of side effects that will last a lifetime.  That's how I felt at the time of my diagnosis and now, having had the MX (not by choice but because I had no choice) and being 6+ years out from my surgery, I still feel the same way.  For most women, radiation is long forgotten 6 years out.  A MX is not.  It's always there. 

But, having said that, if I were to have a lumpectomy, I would certainly investigate the need for radiation before making the decision to go ahead with it. The more questions you ask, the more you understand.  The more you understand, the better position you are in to make the decision that's right for you.  I do get concerned when I see women making a treatment decision - whether it's to have a particular treatment or pass on a particular treatment - without understanding their risk level, how the treatment will lower that risk, and the risks from the treatment itself.  But if someone is making an educated decision, with all the facts in front of her, then I trust that she will make the decision that's right for her. I don't care at all if it's the same decision I made or the same decision I'd make if I were in her shoes. Different issues resonate with each of us. We all see risk differently. My risk tolerance is different than someone else's.  Why would anyone expect that what was right for them will be right for everyone - or anyone - else? 

Good luck with your discussions with the doctor, and with your decision.  And once you make it, whatever it is, don't look back!  

maize

Thanks, Beesie.  There's kind of a language barrier, too, and I don't have a translator.  The doctor may be the most brilliant one around, I don't know, but there's somewhat of a language barrier so it's hard to communicate.  It may be that I don't communicate well and can't make my questions clear. 

I am so glad and relieved I get to get advice from another specialist.  It feels like a weight being lifted, though I haven't even been to see this doctor yet. 

I have a neighbor who had a mastectomy.  I didn't realize until her daughter talked to me that there are long term things involved that I never realized.  You explained that, too.

You have helped me to understand a whole lot more than I did.  Thank you.

Janet456

I am waiting to see an RO but I have been told that they will just tell me I don't need radiation as my DCIS was 9mm and they obtained clear margins.  

Infobabe

Janet456

 My case is similar to you.  Also 9mm. 

I also have big margins due to a rescission though I have been told the original lumpectomy had good enough margins.  

My RO did everything is his power to talk me into rads.  I had even gone through the simulation with tattoos before I got to speak to him at length.  After thinking about it I decided I didn't want rads.  

I thought at that time I would have a MX but on deliberation thought that was still overkill for me.  I am 76 years old too.  So, after a 2nd opinion from a world renown pathology prof in San Francisco who said I have been completely and well treated and needed only mammogram surveillance, I am having no further treatment.  

I don't know if I am right or not.  Only time will tell if I die of something else or cancer.  The something else could even be a side effect of treatment.  I do not urge this for anyone else as it is a personal decision.  A younger woman who has 50 years of life left might want more certainty but it is good enough for me.

Janet456

Hi Infobabe

I am new to all of this and have taken the scenic route to get here having had my mamo (birads 5), US and CNB on 1 June.  Biopsy came back benign tubular adenoma (my lump was 5cm by 3cm).  They did not believe the biopsy results so did them all again - still benign tubular adenoma, so they said it had to come out as the mamo and biopsies did not correlate.  I got the results yesterday and indeed it was a tubular adenoma - but with 9mm outside edge being DCIS.  What are the chances of that!

I will update what the RO says when the appointment comes through. x 

Infobabe

Janet456 

Janet, that is rare.  I have never heard of it before but that is why we have doctors.  Good for your doctors for not being satisfied with the original findings.  

However, if the main lump was b9, it still sounds not so threatening.  We all have different stories to tell and I will look forward to yours.

Janet456

My doctors have been wonderful and I have been so well treated.  I was all for skipping out the door after the first benign result but they wouldn't allow it.

I have no reason to doubt them, so as much as I will ask the RO all the questions, I will be happy to do as I am told.

I've read so many posts where people have to push to get doctors to refer them and get tests etc.  I was called back immediately from my first screening mamo (age 49), seen within 2 days and diagnostic mamo, US and CNB all done on the same day. 

I have gone from feeling utterly terrified to very safe knowing they are looking after me. 

maize

Hi,

Just wanted to update you all.  I got the second opinion and it has made all the difference.  Now I know much more about how radiotherapy will benefit me and I don't have the fears I did.  These doctors answered my questions and gave me clear answers.  (Sigh of relief).  I also want to thank you again for advising me.

Beesie

Maize, I'm really glad to hear that you've finally got the answers you needed.  

What did the doctor tell you? 

Janet456

Hi Maize

I am glad the second opinion made all the difference in how you feel.

My appt is for Monday 30th.

Am I right in thinking that I should ask my grade and how much benefit I will receive from rads to prevent a recurrance?

I will keep you posted. x 

Infobabe

Janet456

Just remember, that if they say rads will reduce your chance of recurrence by, say, 50%, you need to ask, 50% of what.  Maybe your overall chance of recurence is 6%.  50% OF 6 is 3.  These numbers can fool you.

Janet456

I am writing everything down this time.  I have one question that is confusing me and I am hoping they will be able to answer.

Am I right in thinking that DCIS starts and is contained in the ducts only?  I am confused because my 9mm was found on the outside edge of a tubular adenoma which is a benign tumor.  Just when I think I've sorted it all out in my head another random thought pops in to surprise me.

Lee7

For what its worth, I was one would got scared off when I originally posted a question about doing radiation.  I found it hard to post (still do ) and ask questions or try to leave info I have heard about to get more information. It has been hard for me to figure out what to do or not do.

Early on, I switched treatment centers.  There I finally connected with an RO that really explained what could to be done to give me the best treatment with the least long term side effects because my tumor was located on the left side. I am extremely grateful to have had an RO that understood my fears and answered all my questions.

and I truly appreciate all the info here.

Infobabe

Janet456 

Yes, DCIS is in the ducts only and is not invasive.  However, it still must be removed because it can evolve into invasive. 

Is your dog a Greyhound? 

Janet456

Lovely, thank you.

I have 3 greyhounds of my own and I volunteer for a rescue charity for greyhounds.  They are SUCH lovely dogs x

Infobabe

 Janet456

That is so wonderful.  They are lovely dogs.  

We are trying to ban dog racing in, I think, Arizona.  I will have to check to see if it succesful.  Legislation might be halfway through.

Janet456

Hi all

Met with the RO this morning who says I can skip the rads due to intermediate grade, very small size of DCIS and good clear margins.  

He said ultimately the decision was mine as if I wanted to go ahead I could, but in summary he said that he sees alot of people and some decline treatment against his advice and it worries him.  However with me, if I say I do not want rads he would not loose a wink of sleep over it as he deems it not necessary.

Infobabe

 Janet456

Janet, very interesting.  Seems the medical profession is catching up with us.

Janet456

I will give the rads a miss I think.  

I am all for being your own advocate etc but I have absolutely no reason to doubt that I have received anything other than the best care and attention possible to date.  To my mind if the medical profession are as sure as they can be, in my case, that it's not warranted then I would rather keep this option in reserve for the future..... hopefully it won't be needed at all

Infobabe

Janet456

It takes a lot of thinking and you have to know the risks.  

If you list the pros and cons you can see where the weighting is.  There are risks to therapy too.

Janet456

I hope I am wrong but I have a kind of feeling that I be will be walking this path again sometime in my future (i'm not yet 50). I have been assured for now that my margins were very good so I am (perhaps madly to some people's thinking) wanting to keep myself as fit and s/e treatment free as possible to enable myself to be up for the big battle, if and when it comes.

My father now has so many ailments from so many side effect treatments (non cancer related) for various medical conditions that it breaks my heart to see.  If he was fit and able he could easily still fight them off one by one, but the cumulation of treatments for various conditions causes so many problems. 

It's a difficult one as you can only do what you think is right at the time on the advice you are given. x 

Infobabe

Janet456

If you feel like that and because of your age, maybe you should consider a mastectomy.  You did have that benign tumor which while not malignant, is not a good thing.  You could make it a double.  

I feel horrible even making the suggestion because it is such a big decision.  You could have 40 or 50 years of life ahead of you.  Therefore, you need to put this disease behind you as much as you can.  This why age is such an important component.

I am 76 and most people my age are dead already.  So I do not have the long term prospects you have.  My general health is very good, but that doesn't stop something out of the clear blue like this to hit me. 

Janet456

Please don't feel horrible Infobabe as I have already said to my husband that mastectomy may well be in my future.

I must admit to having been completely knocked for six by this.  Up until now I have always (rather arrogantly in hindsight) come to think of myself as invincible - stupid really, but I was always the one who NEVER caught coughs, colds, flu even if sourrounded by a room full of germs, I could go out drinking all night and never suffer from a hangover, up and out to work the morning after at 6am, an impecible sickness record spanning 30 plus years - it goes on.

Then this, so I will take it as what is given and see it as a BIG wake up call and time to get my act together responsibly and hope I get to 76 and look as good as you do xxx