Chest Wall Margin 0.1mm after Mastectomy - radiation decision

Lolalee

Hello dancetrance,

Thank you for the prompt reply it is much appreciated.  I am happy that you have successfully completed your treatment and that you are in a better place. Your comments are very comforting.

My MX is for the 12th September, not too sure about my BS! he did not even mention the pec fascia when I asked about the small chest margin.  I am seeing the PS later today and will ask him about that.  My other margins are good.  Can't believe that the small lesion was so close to the chest wall as in all the imaging it seemed to be in the front. Also the path stated 8x6x5mm.  Out of that they deduced it was an 11mm lesion. All other margins >10mm.

Will keep you posted after the MX.

Best wishes to everyone and hope you are doing well, I have found these posts to be a godsend.  So many are very well informed and it was only by reading on here that alarm bells went off about the close margin.  Not one of the 4 BS I have consulted even mentioned it. Mine has been a long journey to get to this point in deciding MX and I just hope it is not too late.

Kind regards Lola.

Nanam

Hi Lolalee,

I had a mastectomy 6 months ago for DCIS.  The chest wall margin was positive when they did the lumpectomy. There was over 4 cm of DCIS so a mastectomy was recommended because they couldn't get clear margins on the rest of the breast without removing most of it anyway.  I asked the BS about the pectoral fascia and she said that it is hard NOT to remove it and that most of it went when I had the lumpectomy.  Radiation wasn't mentioned to me until after the mastectomy when I was referred to a RO.  She strongly recommened it and I've read of a lot of other women on these boards who have it after mastectomy with close margins.  They didn't use to do it but apparently they do now.  I'm 2 weeks out from finishing radiation and I'm having reconstruction and everything is going fine.  This is the hardest time for you.  Once you're on a path it gets easier.  

Lolalee

Hi Nanam,

Glad to hear you are doing great with your rads treatment.  I was initially hoping to avoid rads by opting for the MX + reconstruction but if I need to have rads anyway I am wondering if I should skip the MX and go straight to the rads. At this point I need to say lumpectomy and rads was initially recommended but I opted for the MX. The small deep margin was not given as the reason for the original RX just that it was the standard treatment.

When I spoke with the BS this week he really did not give me an answer and just said go with the MX. did not know about the RX.

I am running out of time to consult with another BS and need to decide one way or another.  I do question how the MX would be beneficial if I do the rads anyway.  So frustrating and confusing to say the least. 

undercoverebel

Lolalee-I was advised against rads even with a very close margin. When I asked how close the MO put his fingers together and there was no space between them. I opted to skip them because of all of the potential SE's and they felt they would not help me very much. I didn't decide very easily and i'll always wonder if I chose wisely but it's really like flipping a coin. They don't seem to have all the facts or they contradict one another. I know I have a higher recur risk because of the close margin but it is small. BEESIE seems to know a lot about this subject,i'd read her thread or pm her.Good luck.

Lolalee

Hi undercovere,

Thank you for the suggestion, I have PM beesie.

It is so hard to make the right decision.  I know what you mean about the SE to the RX. I do worry about it especially the lungs. My 1mm chest wall margin is a big concern. You are right about the contradiction, can't believe DCIS is treated so lightly.

Keep you posted when I hear from Beesie.

Beesie

Loralee, I just replied to your PM but thought that I would post a reply here too, so that it keeps the discussion going and others can input with their thoughts and experience.

There are pros and cons to all the choices. MX.  MX + rads.  Lumpectomy + rads. Everyone's assessment of which of "pro" is important and which "con" is important is different so even looking at the same facts, any two of us might make a completely different decision.  So I can't say what you should do (and honestly I don't know what I would do in your situation) but what I can do is try to share some of the information that I'm aware of.

Close margins after a MX for DCIS really only became an issue a few years ago, when a small study came out that showed that recurrence risk is quite a bit higher if margins are close after a MX. This has led to a change in treatment standards. It used to be that rads was never given after a MX for DCIS; now sometimes it is. But it's really subjective. Some surgeons, medical oncologists and radiation oncologists simply don't think it's necessary unless (or even if ) there actually are cancer cells right at the margin; others think it's necessary if the margin is less than 1mm or possibly even 2mm (although that's still very unusual).

Here's the study:  Close or Positive Margins After Mastectomy for DCIS: Pattern of Relapse and Potential Indications for Radiotherapy 

And here are the NCCN Treatment Guidelines for Breast Cancer:   http://www.nccn.com/files/cancer-guidelines/breast/index.html#/61/

DCIS treatment is discussed on pages 61 - 63.  On page 62 it says that "Radiotherapy is not needed following a mastectomy unless cancer cells are found in the tissue margin". This is a recent change; it used to say that radiotherapy was not needed following a mastectomy, with no exceptions noted.  

Given that, there is no way to know if rads would be recommended to you if you end up with close margins after the MX.

My question to you is whether a MX would do anything to get better you chest wall margins. If you've already had two lumpectomies and the chest wall margin has remained the same, does that mean that any breast tissue that's against the chest wall has already been removed? Is there anything else to remove that could improve the margin, or is this the margin that you are stuck with? To me, that's the question for your surgeon. If the MX actually would be expected to improve the margin so that you can avoid rads, that's a reason to consider the MX. But if it's doubtful that the chest wall margin would get any larger even after a MX, that puts into question the value of the MX.

Personally I would want a fuller explanation of this from my surgeon before making my decision. If there were cancer cells stuck right up against the chest wall, the type of surgery doesn't change that. Is that your situation? Or is there a reason why your surgeon thinks you will get better margins with a MX?  You should insist on getting this answer from your surgeon - if the surgeon is recommending a particular treatment, he owes you an explanation as to why he's recommending it and what he believes the result will be.

Lolalee

Hi Beesie,

Thank you so much for your prompt reply. I appreciate the time you have taken and the valuable information you have given.

What you say makes a lot of sense. After the 2nd lumpectomy I was told the margins were much better and as I was so averse to RX it would be reasonable to just watch.  MX was not recommended.

I will make an appointment with that surgeon and try and get some more information regarding the 2nd lumpectomy.  Unfortunately the planned surgery for the MX is with another surgeon so he obviously cannot give me further information. I just lost confidence in the surgeon who perfomed the 2nd lumpectomy after saying it would not be unreasonable to just monitor the situation.  I also now feel that the supine RX would be more appropriate than prone to be able to better access the chest wall.  I spoke with 2 RX therapists before deciding on the MX and neither mentioned the proximty of close margins as being a good reason for the RX in the first place. The decision to do MX was mine.

I have wasted a lot of time trying to get the best outcome as the 2nd lumpectomy was in May. I feel that my situation has been badly handled and that DCIS was not taken seriously. It was only after getting information on these boards that things became clearer regarding the margins.

Will keep you posted.  Thanks again.

Kind regards,

Lola

Lolalee

Hi Everyone still logging on to this thread.  Thanks again Beesie for your help.  I met with the surgeon regarding the close margin to the chest wall.  Reply was he was not concerned with the margin as the pec muscle acted as a barrier and I should just move on.  No RX. 

 I had a consultation with a RO and she most def recommened radiotherapy saying that there was a small risk associated with the treatment.  During the simulation my large breast was all over the chest so the markings on the chest wall were considerable.  After the CT scan I was approached by an RN doing survey on the pros and cons of using deodorant during treatment etc. She also stated that the amount of perspiration during treatment was reduced anyway, ( so that means I get radiation to a huge area under the arm as well).  How I hate the idea of radiation for me! I have lungs issues as it is. I also think doing surveys for use of deodorant is a waste of time and money and could be of better use elsewhere.  Common sense should prevail, it is not difficult to go without for some 6 weeks!

 So Monday I am visiting another BS to see if he can get better margins with a MX and forgo the RX. I also rang the pathologist who revisited the slides and said that the 1mm margin was fibrous and IHO radiotherapy would be of benefit and he would be recommending that to female members of his family. Thought MX was drastic.... Grrrr hate this so much!

BLinthedesert

Hi Lolalee, I am so sorry you are going through this decision.  I was told that I would likely need radiation even with a mx as well.  So, I chose lumpectomy (ended up that they took out part of the fascia and I DID end up with clean margins -- though I am still having some problems with the musculature of my chest because of the fascia damage -- I can't believe what those poor women went through when they did radical mx).   I went through radiation and it was not bad at all.  I am a runner and the scar tissue from the surgery (and radiation probably exacerbated it) is my primary SE ... no lung damage - I ran through radiation (50 miles/week) and was back running my usual mileage within 3 weeks of my last treatment.   Radiation is not fun, but it is doable, and most of the SE's are short lived.  The surgery to my fascia likely has caused more problems for me than the radiation ... in my opinion, and you are going to have that problem with mx or lumpectomy, since your DCIS was so close to the chest wall.  

Just FYI many of us on the May 2012 radiation group ended up using regular deodorant - with no issues (it was summer, and a hot one at that ;-)). There was a study done recently that showed no issues with usual deodorant.   

Good luck to you. 

Lolalee

Hi BLinthedese,

Thank you for your reply.  So glad to hear that you did not have any bad SE to the RX.  I see that you are a runner and very fit which certainly would have helped. I am still trying to decide but cannot get any confirmation if I would need Rx after Mx.

 I have had 2 lumpectomies so far both were clear margins but the 2nd one had much wider margins.  Both of course still had 1mm deep chest margin.  When I spoke to the surgeon who did the 2nd lumpectomy about my close chest wall margin he said that he more than likely removed the fascia but he sounded hesitant so I am not sure that he did do that, plus I have not had any pain at all which I am sure I would have had that been the case.  I might add that at no time with the 3 consults I had with him he ever mentioned the 1mm margin, when I quizzed him at the last appointment he just said that he was not concerned about it.  Well he might not be but I am!

I need to decide really quickly now as I have appointment booked for 25th to start RX.  So is it to be Mx or Rx or Mx plus Rx....... hell I just don't know.

BLinthedesert

Lolalee,

You don't have to start radiation without first discussing all these things with a RO.  I met with my RO two times BEFORE I went in for my simulation and tatoos.  Before you start any treatment you need to meet with all of your medical team and make sure you are comfortable with them.  If at any time you are worried, or don't feel comfortable with a physician, you need to find another to work with. You might even want to get a second opinion with another BS and/or RO.  

These are very important decisions, and you need to feel comfortable with them moving forward.

best wishes to you. 

BLinthedesert

Lolalee, I am not sure about Australia, but here the BS don't make decisions about radiation, nor do they give advice about treatment after surgery.  They do the surgery and then other treatment decisions are made by MO (if chemo or hormonal therapy is recommened) or RO.   For me, the RO was the one who said she would recommend radiation even if I chose MX ... because she was not convinced there was any surgery that would be able to remove breast tissue (specifically DCIS involved tissue) when it is right on the chest wall.  But, that was just her opinion (well, I guess her professional opinion would be a more appropriate description, she has been doing this for a long long time, much longer than I have been researching it ;-) ).  

Lolalee

Hi BLinthedese, Thank you for your response.  What you say makes a lot of sense.  I did read somewhere that DCIS recurred because a duct had been left behind during a MX. I did not think that this could happen because I assumed that the ducts were close to the nipple area until I researched the physiology. It was then I realized my close chest wall margin!  All my scans showed the DCIS duct being close to the nipple and yet the pathology report stated 1mm from chest wall which set off the alarm bells.  I was due to have MX 12th Sept but cancelled until I could get further information.  I have met with 3 RO and had simulation study for both supine and prone position and all have recommended RX. At this stage I am leaning towards RX in supine position.

Lolalee

Hi Beesie, I consulted with the BS who was to do the MX on the 12th and he thought he could possibly improve on the 1mm margin. He also said he would remove the pec fascia if that had not already been done during the 2nd lumpectomy.  I cancelled the surgery until I could get further information.

I spoke with the head of pathology and asked for another opinion on the slides.  He said he concurred with the original report but stated the 1mm chest wall margin tissue was fibrous. He also stated that even though he was not qualified to say he would recommend RX for any female members of his family.

NSJ2

Reading this thread with great interest. Sorry to hijack with a quick question, but I'm booked for a lumpectomy on the 20th - DCIS approx 6mm. My lump may be close to the chest wall, not sure. But regardless, what mm should a BS try to acheive for clean margins?

Thanks in advance for any help on this question.

dancetrancer

I believe a minimum of 3 mm, 10 mm is preferred...but it's been a while since I was researching all of this, so I may not have recalled that correctly.  

NSJ2

Thanks so much, DanceTrance.  10mm seems quite wide, no?

Anyone else want to chime in on this?

BLinthedesert

Lolalee, as with most things here, it really depends on how much risk you personally are willing to live with on whether or not you choose radiation.  I am pre-menopausal and as with you, ER-/PR-, so we don't have many other prevention options (I was told ~20-30% chance of recurrence without radiation in my particular case).  So, I decided I would prefer 10% chance of recurrence over 20% and decided to do the radiation. The risk after MX is much lower, though a little higher for those of us with the cancer at the chest wall.  

I decided against MX because it is a more invasive surgery and I am surgery adverse unless absolutely necessary; also, I am a runner and I work well over 70 hours/week in a typical week and simply didn't want to take the time to heal and to do the whole TE thing (which I was told would be my option -- though to be honest there might have been others, I did not follow through with other PS).  If I had chosen a MX and was told my risk was less than 10% I might have skipped the radiation.  

 NSJ2 - the surgeon will do what they can to ensure margins between 1mm-10mm, though many try for 2mm-3mm, if they don't get 1mm on the first surgery they will go in again (called a re-exicision).   It is obviously more difficult to get clean margins if the cancer is right on the wall.  If yours was on your chest wall you would probably know because often they can't biopsy these without an excisional biopsy. 

NSJ2

Thank you BL. You're always are so dang helpful!

BLinthedesert

NSJ ... only a few more days!!  You will come through easy-peasy.  It is more scary than anything ...  stay calm!

Beesie

Something else that's important to keep in mind about margins.... the surgeon will go into the surgery with a particular objective in mind, but in most cases, particularly with DCIS, the surgeon is 'operating blind' and really can't control what the margin will be.

DCIS usually is not a well defined lump; DCIS is just a bunch of cancer cells that are spread out in the milk duct.  These cancer cells are microscopic - they cannot be seen by the naked eye.  That's why you get the wire placement before surgery - it's to tell the surgeon where to operate.  Based on where the wire is, and based on how large the area of cancer appeared to be on the films, the surgeon removes a certain amount of breast tissue from a certain area of the breast.  If the area of cancer appeared to be 1cm in size, the surgeon might try to remove a 2cm area of tissue.  He (or she) will try to get a nice good margin. But it's always a possibility that there could be a larger area of cancer than what showed on the films; the area of cancer might extend farther than it appeared to. And that's why 20%+ of DCIS lumpectomies result in positive margins and then require a re-excision. 

As for the size of the margin that the surgeon targets, for those having a lumpectomy, it depends on the size of the tumor and the size of the breast. With a larger tumor in a smaller breast, it will be difficult to get large margins and the surgeon may therefore be happy if he's able to get 3mm. But with a small tumor in a larger breast (or even a smaller breast, frankly), it often is possible to achieve very good margins (10mm is considered "ideal"). But it might take a couple of surgeries to get there.  

For those having a mastectomy, the surgeon removes as much breast tissue as he can and the margins are what they are.  

What it comes down to is that every surgeon tries to achieve an acceptable margin, but until all the breast tissue is finely analysed under a microscope, there is no way to know how large the margin actually is, or whether all the margins are in fact clear. 

Beesie

Lolalee, it's great that you got another opinion on the slides.  Are you saying that the pathologist would recommend radiation to a family member in your situation even with a MX? In that case, what's the advantage of having the MX?  Of course, if the fascia was not removed during the 2nd lumpectomy and it would be during the MX, then I do see the benefit there.... but it certainly begs the question why this wasn't done during the 2nd lumpectomy since the sole objective of that surgery was to achieve better margins.  

NSJ2

Thank you for the well wishes, BL. You're too kind.

Beesie,

For my DCIS I think, or thought, I had a well defined lump. No?

Beesie

NSJ2, most DCIS does not present in the form of a lump.  I believe that only about 10% of DCIS cases involve a defined lump.  I don't know how your DCIS presented.  Did a lump show up on your mammogram, or were calcifications seen?

Lolalee

Beesie is right, mine did not present in the form of a lump either. There was a small area of calcification which showed on the Mammo but a hookwire was needed in order for the BS to be able to locate it during surgery.

I thought that the calcification caused the cancer whereas according to my BS, the tumor cells caused the calcification. It could not be felt or seen unless under a microscope. I have been having mammo's every 2 years since 1981. I was very young and had lumpy boobs.  My films are so heavy I can barely lift them, hell for all I know the xrays may have been the cause of the cancer or the bad mastitis I had during breast feeding. Back in the 70's they used breast pumps on me at the hospital as they had lots of prem babies and moms without breast milk. Little did I know I would go on to develop a really nasty boob infection, could be I am still paying for it! OR it could be a million other things! Anyway getting back on track.

Thanks Beesie on the information about margins.

BLinthedesert

Mine presented as a lump, found on breast exam, though in retrospect the lump was a bunch of proliferative benign stuff with a few foci of DCIS spread around.  The mammogram only found some microcalcifications about 2cm below the mass, these ended up being mostly ADH. The 6cm of tissue from the lumpectomy was busy, but only a small (relative to the whole tissue) amount of intermediate grade DCIS.    

NSJ2

My biopsy path and the images made me think it was a lump.

The path report reads:

Maximum Linear Extent of 0.6cm

The MRI reads:

Small 6mm diameter focus of enhancement inferior left breast 6:00 position correlating with the recent positive biopsy.

I just always assumed it was a "lump"???

Lolalee

Hi Beesie, The BS hesitated when I asked about the pec fascia removal during 2nd surgery.  I feel that the membrane was not removed and he certainly did not discuss the procedure in previous visits. He did say that he was not concerned about it. I agree that it should have been dealt with and as I mentioned before this very experienced high volume breast specialist played down the DCIS.  I am now seeing another BS as I have lost confidence in him.

Pathologist recommended RX knowing that I have not yet had MX. I will need to ask him if both are recommended.

Beesie

Lolalee, I think an interesting question for the pathologist, and for an RO, would be whether they think rads would be required if you go back for the MX and the fascia is removed. It wouldn't significantly increase the margin but would it be enough for them to say "no rads required"? 

NSJ1, did your mammogram describe calcifications or a mass? My take from the words "maximum linear extent" is that you have 6mm line of DCIS in a single duct, seen on the mammogram as a line of calcifications. Since the MRI was done after your biopsy, I'm not sure whether the MRI would be showing what's in the breast now or whether it's highlighting the area where the biopsy was done. With a vacuum biopsy, I would think that possibly most or all of your DCIS has already been removed. 

Lou10

Sorry if this has been covered, or is not relevant ... only read a few of the initial posts. Noticed that Lisa said tamoxifen is not used for DCIS in Vancouver, Canada. The excerpt below is from the BC Cancer Agency's Cancer Management Guidelines. If you didn't have a bilateral MX, you may want to talk to a medical oncologist about this.

 

The following guidelines should be used when considering tamoxifen in women with a diagnosis of in situ disease only:

– adjuvant tamoxifen should be offered to women with DCIS, after consideration of known risk factors in particular age and margin status, and after confirmation of ER positivity. It should not be considered for women with bilateral mastectomies, with an increased risk of endometrial cancer or thromboembolic events, or for women with a life expectancy of <10 years or who have recently been on tamoxifen for prevention. The tamoxifen dose should be 20 mg/day for 5 years. 

 

http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/Breast/Management/InSituDisease.htm