The Most Difficult Decision of My Life

TB90

I am going to ask for everyone's help once more and then I will move on (hopefully!).  I am not new here as I was dx with dcis in November 2013, and had a left mx on December 18th.  I was originally told "no further treatment needed" and then discovered a positive (focal) margin in pathology report.  I have researched this topic to exhaustion as to whether or not I should have rads.  My bs does not believe that I need to as the chances of a recurrence are 15% or less.  But I was originally at the 2% or less before positive margin, so I have struggled with this increase.  Rads would bring it back down to 5 to 7% and maybe even less (these are approximates of course).  BUT there are risk factors having rads not to mention that it would take away my opportunity to have rads in the future should a recurrence happen.  Recurrences are most often invasive for mx ( I believe this is because dcis is no longer detected as it does not show up often as a lump and that is how most recurrences are found post mx.  So dcis goes undetected until a lump forms and by then it is invasive).  However, most are very easily treated as they are usually found early with close vigilance, but by using rads, which I would not have as a tool if I use up my one opportunity now.  So, rads now and less chance of recurrence, but with risk factors of rads, or no rads, and increased chance of recurrence (likely invasive), but with rads option should that happen.

I met with RO and luckily got the head of the department and the most highly recommended RO just by luck.  He and I compared studies and he was so impressed with my research.  He asked if I had used the university for my research and I almost asked him if he had heard of Beesie   The studies support both approaches equally as there really are few numbers of us to study at this time.  He stated that the disadvantage of rads now is the inability to treat a recurrence in the future with rads, but that for someone that likes to cross her t's and dot her i's ( me) , that rads now "might" bring the most reassurance.  He supported my decision to proceed with rads.  I went for my tattoos yesterday and start rads on the 20th of Feb.  Now I second guess my decision.  Neither decision really works for me and I realize that I will have to make the best decision for ME.  But I do NOT know what that is.

I realize that no one can make this decision for me, and I will not let anyone's single experience or beliefs dictate my decision, but I still would love to hear from others.  I feel very alone in this situation, but just found another lady on another forum with a similar situation.  Now I feel less alone I also wish that I could find more info about chest wall recurrences and effective treatment (if that exists) without using rads.  If that existed, I know I would settle with my decision.  I have never struggled like this before even with the other most important life decisions.  As if BC is not already tough enough.  I still am very positive though as I realize that my prognosis is excellent either way and for that I am very grateful.  Thanks in advance.  By the way, there should be a lot more women from Winnipeg joining as everyone was writing down bc.org when I was explaining where I was receiving so much excellent info and support        

april485

Hi TB90-

I struggled with this decision myself big time. In the end, I did decide to do the rads and am not at all sorry that I did. I was lucky enough to end up in a dose dense 1 week 2 x a day trial so I did not have to endure 6 long weeks of it, but had I not been in the trial, I still would have chosen rads over doing nothing. I had only lumpectomy, not a mastectomy so the odds were higher for me for a recurrence without doing rads than for someone who had a mastectomy per my RO. In the end, it is ultimately up to you, but if it does come back, rads are not always the answer anyway. Many times they give you chemo w/o rads if it is invasive so I would not worry too much that it will no longer be an option if that is your dilemma.

I agree about Beesie's knowledge of DCIS!

Best of luck to you whatever you decide. Ultimately, you have to ask yourself which would upset you more. If you did rads and h ad a recurrence knowing you did everything possible to prevent recurrence or have a recurrence knowing that you could have had rads which may/may not have prevented it. That is how I weighed it and came out with wanting to do all that is possible to prevent a recurrence.

Keep the faith! Your first decision is usually the right one!

percy4

The radiation decision is a really hard one.  Of course, you know the pros and cons of either decision.  I agree that looking at your future self and weighing which outcome would be the most acceptable to you is a good way to decide. xx

SelenaWolf

"... He asked if I had used the university for my research and I almost asked him if he had heard of Beesie   ..."

Unfortunately, I have nothing to offer you with this decision, but I confess that I smiled when I read this.  Our Beesie is a jewel.

Beesie

I smiled too.  Thank you!

TB90, when I had my MX, I had one close margin, at the skin.  Back in those days, rads was hardly ever given after a MX for DCIS (I had DCIS-Mi but that's effectively the same) and as such, rads was not recommended for me.  I did ask about rads, and would have been willing to have rads if it had been recommended.  But it wasn't, so instead I decided to ask my PS to remove a bit of skin at the scar line (that's where my closest margin had been) when I had my exchange surgery.  That was my way of addressing the close margin.

If I remember correctly, your close margin is at the chest wall, not at the skin, which means you don't have the same option that I did.  However I know that you are ER+, which means that one other option that you do have is Tamoxifen.  Tamoxifen would also reduce your recurrence risk by about 50%, and it would help protect your remaining breast as well (you had a UMX, right?).  Of course, Tamoxifen is a longer term committment.  

So if you really are uncomfortable with having rads now, taking Tamoxifen instead would have about the same effect, in terms of reducing your recurrence risk.  Just something else to consider.

Rubiayat

I have struggled with whether to do radiation or not too. My DCIS is multifocal with a microinvasion of IDC, but it is not near my chest wall. With the location of your focal point I imagine the radiation might hit more of your heart and lungs than in my case. To make my decision I weighed my risk of recurrence without rads (~40%) against the much smaller risk of heart or lung complications down the road. I am also worried about not having the option to radiation down the road or how radiation will affect my breast tissue if I were to need a MX later. I decided that I have to make a choice based on what will maximize my chances right now and hope that I do not have to deal with possible negative impacts from radiation later.

edwards750

TB90 - I am not the same stage as you are - Stage II, Grade 1 but I did have a lumpectomy followed by additional surgery to even the margins and 33 RADS treatments and at least for now, 5 years of Tamoxifen. My Oncologist recommended RADS so I didn't think twice about it. I have to admit though I am concerned if God forbid I had a recurrence that RADS are not an option but I will cross that bridge if/when I come to it. I think if I were you I would have the RADS now...just saying. Diane

Beesie

TB90, I appreciate the difficulty of your decision.  Personally I think your decision is very different than the decision of someone who's had a lumpectomy. Rads is an expected part of the treatment plan in most cases when a lumpectomy is done and there is tons of research on the extent to which it reduces recurrence.  And after a lumpectomy plus rads, if there is a recurrence, a MX can be done - and normally rads isn't required after a MX.  So having rads after a lumpectomy still leaves good treatments options available in the event of a recurrence (although it can impact reconstruction after a MX).

After a MX, the decision process on rads is quite different. If there is invasive cancer at the chest wall or if there are many positive nodes, then the benefit of rads is quite clear.  But with DCIS at the chest wall and a 15% recurrence risk (and 30% - 50% of recurrences still being DCIS), the pros and cons list is a lot more even and the decision is a lot more difficult.  Do you take all the treatment options now, or do you leave something in the bag for later?  

There have been other DCIS women who've had a MX and who've faced this decision, and I was hoping that some would come by.  Since none have, I'll see if I can find any of the threads where this is discussed so that you can get the benefit of their thoughts.

TB90

Thank you everyone for your responses.  There are often very difficult decision to be made in this journey.  Beesie, you summarized my thoughts/concerns very well and nailed every key point that is making this decision very difficult.  You also helped me to confirm that I am not being ridiculous with this decision as it is a dilemma.  Hoping others who have had a mx for dcis and then either had or considered radiation can contribute as well.  Where are you gals??? 

Beesie

TB90, I thought that this discussion had come up in the past 6 months
but it appears that most of the discussion on this is older. Here are
the most recent discussion threads that I can find about this:

Topic: How effective is radiotherapy in reducing recurrence risk?

Topic: DCIS + MX + Rad

Topic: DCIS, BMX/MX, and radiation ladies

Topic: Chest Wall Margin 0.1mm after Mastectomy - radiation decision

Nanam

I had a positive margin at chest wall after mastectomy for DCIS.  The radiation oncologist thought I was still at very high risk for relapse even after mastectomy.  This was because of the positive margin, the large size of the DCIS and also because it was grade 3.  She recommended rads because she felt it was important to get rid of any stray cells that may have been left now, and not "chase the cancer" as she put it, later.  That convinced me.  I had implant reconstruction and am still having some fine tuning of that.  Coming up to two years later and so far so good.  I'm glad I did it.

Jonesy41

TB90' you said -         Recurrences are most often invasive for mx ( I believe this is because dcis is no longer detected as it does not show up often as a lump and that is how most recurrences are found post mx) - 

I have never heard this before? But I suppose that makes sense as we can't get them mammo or MRI. My DCIS presented as a lump- if it does recur, I hope it presents as a lump again?!  

TB90

Hi Jonsey:  Recurrences following DCIS are supposed to be 50/50 for Dcis and Invasive breast cancer.  But in all the research I have done, the vast majority of recurrences for DCIS following a mx are invasive.  I made the assumption that it was due to the fact that 80% of DCIS is not palpable.  So by the time it is palpable and detected through a physical exam, it is more likely to be invasive.  And correct, mammograms are no longer an option following mx.  I asked about MRI's and was informed that a physical exam (I have not had reconstruction) is better at detecting a small lump. I honestly do not even know how a MRI is done, but I thought it was a full body scan, so still could be done following a mx.  Not recommended by my dr. I do not believe they are commonly done in Canada as I have been told that they are very hard on your body and have too many false positives.  But I know very little about MRI's so please do not go by this.

If I recall correctly, you had a mx with clear margins.  Your chances for recurrence are very slim.  You likely have the cure and should not worry about recurrences.  I said "should".  I know that is easier said than done, but really, you are extremely unlikely to have to ever deal with this. I know how hard it is to deal with the unknown and any chance of further problems.  Our confidence in our bodies and our endless futures has been shaken and will take time to find another foundation. 

wyo

This physician report from MD Anderson does a nice job and echoes a lot of the same discussion we are having here with treatment options.  Don't be turned off when the report the question of is DCIS carcinoma because they go on later to qualify that remark and question further 

http://www2.mdanderson.org/depts/oncolog/articles/...

sunshinegal

TB90, I had to make that decision 3 years ago. I had clean but very small margins after my UMX. Two different tumor boards looked at my case regarding whether rads was indicated; one had a mixed outcome (Lahey Clinic); the other (Dana Farber) supported skipping radiation. My surgeon felt confident about my skipping rads - he had removed the fascia of my chest wall muscle and felt that that offered protection against stray cells against my chest wall. A few others felt otherwise, although pretty much everybody said that either decision could be justified and so it really came down to me. (Great, thanks!)

In the end I slept better at night with the idea of not doing radiation - leaving it as an option if I needed it in the future. For what it's worth, I haven't once regretted the decision.

Good luck!

Fight4mm

I am glad I found this board. I am facing this exact situation now. I had a bilateral mastectomy on Feb 3rd, I had grade 3 DCIS. I am so small chested and it was very wide spread, I am 30 and the choice for a BMX was a simple one for me. Now I have 1mm clear margins and have been faced with the radiation issue. I met with the radiation oncologist and she provided me with 2 studies, one put my reoccurrence at 3% and the other at 16% so I guess I am somewhere in between? My surgeon said she felt fine with me passing on rads and my oncologist said I should go to the rad oncologist appt but she didn't see any reason that I would actually do rads. The actual rad onc just said she was on the fence with it all and was leaving the decision up to me. I did have clear, just very small margins. I think I should get a 2nd opinion and decide but due to it being on my left side, the side effects of radiation and also the side effects of reconstruction and loosing a back muscle I am still leaning towards passing. I have lived on these boards the past few months and you all are so great!

TB90

Hi Fight:  There was a recent study that suggests even small negative margins are sufficient.  As that is your case, you may consider to forgo the radiation.  I had a very small positive margin and even though they felt that I likely did not require radiation, I have started it as I just could not live with that positive margin.  I was given the same stats but if you look closely at most studies, they lump positive and close margins together.  I just bet that the vast majority of recurrences happen to those with positive, not the close, margins.  I think you can relax.  

wyo

Still worth a look as DCIS is discussed in the text about the guideline relative to margins.

https://www.astro.org/News-and-Media/News-Releases/2014/ASTRO-and-SSO-issue-consensus-guideline-on-margins-for-breast-conserving-surgery-with-whole-breast-irradiation.aspx

 The included studies encompassed 28,162 patients with stage I or II invasive breast cancer who were treated with whole-breast irradiation and with a minimum median follow-up time of four years. Patients treated with neoadjuvant chemotherapy or patients with pure ductal carcinoma in situ (DCIS) breast cancer were not included in the research for the guideline.