Chest Wall Margin 0.1mm after Mastectomy - radiation decision

ZTeam

Well, after all my appointments I am no closer to a decision! Urgh! After seeing my MO yesterday, I didn't think I wanted to do radiation. Today, I saw my RO and now I'm leaning more towards doing it. Double urgh! Here are the highlights from both appointments:

MO:

- Probability of local recurrence is <5%. Probability of systemic recurrence is %.

- The Oncotype test wouldn't be useful for me because it was based on women who had lumpectomies not MX and, therefore wasn't applicable to me. The test also needs to be validated in a prospective study. She said a couple of other interesting things about the test for DCIS. Please PM me if you're interested.

- There is no medical imperative to do an adjuvant treatment. Doing nothing would be entirely reasonable.

- If she were in my shoes she wouldn't do radiation. She thought there would be some benefit to ‘saving' it in case there is a recurrence. Radiation could also complicate reconstruction.

-She might do Tamoxifen in my position, but she wasn't sure how this would impact my polycystic ovarian syndrome.

-Metformin is being tested for invasive cancer only, not DCIS.

-Reconstruction doesn't seem to increase the risk of recurrence of delay in detection. She was familiar with micro-fat grafting with the Brava and doesn't think that it would increase the risk of recurrence.

RO:

-When I first met with the RO, she thought my risk of recurrence was 3 - 5% and didn't recommend radiation. However, she said she would do it if I wanted it. She has since taken my case to the breast cancer conference/tumour board and the board agrees that the risk is between 5 and 10%. Probability of invasive recurrence is half that. She said that the MO doesn't treat DCIS and disagreed with her assessment of a <5% risk of recurrence.

-The threshold for recommending radiation is in the area of 10%.

-The RO is now on the fence about recommending radiation. She said that if I were 10 years older (I'm 36), she would recommend it. I need to clarify why that makes such a difference for her.

-She that typically they prefer to treat aggressively the first time so that it doesn't come back, rather than ‘save' radiation for a recurrence. However, she said that in my case, maybe that's something we should think about.

-She said that she personally would worry about a recurrence.

-Radiation cuts risk by 2/3.

The latest:

I had a CT scan done yesterday to see where my heart is in relation to the treatment area. The tech said it's as far as he's ever seen it. Yay! I'm now waiting to hear back from the RO to see if this changes her recommendation at all.

Last night I found some red patches around my mastectomy scar and a red dot in the scar. I totally freaked out and I think I've scared myself into getting radiation. I've since figured out that the red patches were a mild reaction to the tape they used during the CT scan. I don't know what the red dot is. I'll have to get that checked out.

ZTeam

Well, after all my appointments I am no closer to a decision! Urgh! After seeing my MO yesterday, I didn't think I wanted to do radiation. Today, I saw my RO and now I'm leaning more towards doing it. Double urgh! Here are the highlights from both appointments:

MO:

- Probability of local recurrence is <5%. Probability of systemic recurrence is %.

- The Oncotype test wouldn't be useful for me because it was based on women who had lumpectomies not MX and, therefore wasn't applicable to me. The test also needs to be validated in a prospective study. She said a couple of other interesting things about the test for DCIS. Please PM me if you're interested.

- There is no medical imperative to do an adjuvant treatment. Doing nothing would be entirely reasonable.

- If she were in my shoes she wouldn't do radiation. She thought there would be some benefit to ‘saving' it in case there is a recurrence. Radiation could also complicate reconstruction.
-She might do Tamoxifen in my position, but she wasn't sure how this would impact my polycystic ovarian syndrome.

-Metformin is being tested for invasive cancer only, not DCIS.

-Reconstruction doesn't seem to increase the risk of recurrence of delay in detection. She was familiar with micro-fat grafting with the Brava and doesn't think that it would increase the risk of recurrence.

RO:

-When I first met with the RO, she thought my risk of recurrence was 3 - 5% and didn't recommend radiation. However, she said she would do it if I wanted it. She has since taken my case to the breast cancer conference/tumour board and the board agrees that the risk is between 5 and 10%. Probability of invasive recurrence is half that. She said that the MO doesn't treat DCIS and disagreed with her assessment of a <5% risk of recurrence.

-The threshold for recommending radiation is in the area of 10%.

-The RO is now on the fence about recommending radiation. She said that if I were 10 years older (I'm 36), she would recommend it. I need to clarify why that makes such a difference for her.

-She that typically they prefer to treat aggressively the first time so that it doesn't come back, rather than ‘save' radiation for a recurrence. However, she said that in my case, maybe that's something we should think about.

-She said that she personally would worry about a recurrence.

-Radiation cuts risk by 2/3.

The latest:

I had a CT scan done yesterday to see where my heart is in relation to the treatment area. The tech said it's as far as he's ever seen it. Yay! I'm now waiting to hear back from the RO to see if this changes her recommendation at all.

Last night I found some red patches around my mastectomy scar and a red dot in the scar. I totally freaked out and I think I've scared myself into getting radiation. I've since figured out that the red patches were a mild reaction to the tape they used during the CT scan. I don't know what the red dot is. I'll have to get that checked out.

dancetrancer

Uggh Lisa!   First of all, hope the red dot goes away soon, that's all you need - something to make you worry more right now!  

Seems like my MO was less worried about the recurrence, too, compared to the RO's.  I wonder why that is...do you think b/c they see more advanced cases and treat with chemo that DCIS seems much less scary to them?  

I was also told by my 3rd RO that the oncotype test wouldn't apply for the same reasons, plus that age was an independent factor.  I'm satisfied after hearing from two of them saying no that indeed it would not be helpful to have the test. 

Glad to hear she was familiar with the Brava and fat grafting and that she didn't think it posed any extra risk.  

I was told the threshhold they have for treating with rads is > 15% recurrence risk.

 "The RO is now on the fence about recommending radiation. She said that if I were 10 years older (I'm 36), she would recommend it. I need to clarify why that makes such a difference for her."

Honestly, that statement makes no sense at all to me.  I was told multiple times that younger age increases your risk, b/c these cancers tend to be more aggressive, plus you have more years for the risk to accumulate.  So that would be why they'd be more likely to recommend rads for me but not for someone in their 50's or 60's.

Thrilled to hear your heart is so far out of the rads zone - that is AWESOME news for you, should you decide to proceed! 

cycle-path

"She said a couple of other interesting things about the test for DCIS."

Zteam, I wish you'd post that, perhaps in a new topic on the DCIS board or in the thread about the new test. I'd PM you, as you requested, but I think it would be of wider interest.

But if you'd rather respond to me by PM, please do! 

dancetrancer

Lisa - how's it going?  Did the red dot go away? 

ZTeam

Hi Dancetrancer,

Yes, it finally went away over the weekend. Thanks for asking:)

My RO was off Friday and today, so I haven't talked to her yet about why she is hestitating to recommend rads for a younger person. Hopefully, I'll find out tomorrow. Nonetheless, I'm now leaning heavily towards doing the rads. If I do it, I would start Jan. 17. She said that I can cancel up until the last minute if I want. I'd like to just make the decision and be done with it and I think I'm getting close to that. How about you? 

dancetrancer

So glad the red dot went away!  

I'm waiting to have a follow-up appt with my 3rd opinion facility and to see what their tumor board says.  I'm calling them today and hoping I'll be able to get in the first or 2nd week of January.  I'd love to jump ahead and just have the whole decision making process be over with right now, as I feel the same way as you - I want it over with!  

My 2nd RO called me yesterday and says she has a few more things she wants to discuss with me...I was surprised - calling her back today.   

ZTeam

I just got off the phone with my RO. She said that the reason she would recommend radiation for someone 10 years older than me, but not someone in my age group, is because of the risk of secondary malignancy. She said that overall, the risk of secondary malignancy is about 1 in 1000 10 to 20 years down the road. However, the risk is higher the younger you are because you will be around longer so your cells will have more time to mutate. She estimated the risk for me to be about 1% chance of a secondary malignancy.

She also said that none of my heart is in the radiation field if we do the deep breathing technique. Yay!

We will only be doing the chest wall, not the armpit or clavicle, so my risk for lymphedema won't be increased.

There's also a small risk to my ribs. Apparently, <5-10% of patients get tender ribs and the bones thin out a bit. Only about 1 - 2% of the time is the tenderness permanent. Has anyone else heard any stats on this?

Side effects to the skin are most likely. My RO said that usually people with darker skin have more problems with radiation than light skin. I'm very light skinned, so hopefully this will bear out for me. She also said that the pec muscle doesn't get enough radiation to be affected.

At this point, I think I'll probably be doing radiation. I'm testing out 'living with the decision' for a couple of days to see how I feel. So far, I feel good about it. I think I'll have made a decision by the end of the week.

Dancetrancer, did you hear back from your 2nd RO? Anything new to consider?

Best,

Lisa 

dancetrancer

Zteam -  that is interesting her thinking about a secondary malignancy...but if it is 1%, I would imagine from the feedback that you are getting that the risk of bc recurrence is higher, than that, correct? 

That is REALLY awesome about your heart not being in the radiation field.  Such a huge relief!!  After speaking with both RO's, I am also feeling more confident about their ability to minimize heart damage with the newer techniques.  

I've read there is a small chance of rib fracture, but I don't recall the stats on it.

That is good news for me as well about the skin, since I am also fair skinned.  And also good to hear about the pec muscle.  I would still be doing daily stretching, though, to keep it limber!

So glad for you that you are getting closer to making a decision!!!

I did not hear back from my 2nd RO.  I returned her call, but she has not returned my call yet.   Will post when I hear back from her.  It may just be her following up with me about how to schedule an appt with the MO or something.  

ZTeam

Hi All,

I finally made a decision shortly before Christmas to do radiation. I had my first treatment today and it went fine. Only 27 more to do:)

These discussion forums have been so helpful to me in coming to a decision. Thanks to everyone for sharing their experiences and wisdom. 

Best,

Lisa 

dancetrancer

Lisa, great to hear from you and also to hear your first treatment went well.  Please keep us posted!

I never heard back from my 2nd RO, so it must not have been something all that important.

I do have my appt set up with my 3rd opinion facility for this coming Monday the 9th.  I think after that appt they will have the tumor board (this appt is with the breast surgeon/plastic surgeon whom they want me to see before my case goes to the tumor board).  

I had my 2nd reconstruction surgery on Dec 23rd and am still recovering from that.  The first 2 days were pretty darn rough, but I'm doing well now.  Just kinda sore all over, but it's getting better every day.

Will keep you posted on what I find out after my appt Monday!  

dancetrancer

Hey all - haven't had my appt yet with the Emory surgeon (that's Monday), but I just was able to get my hands on the FULL copy of an article he published, along with commentary and questions from other docs at the end. We've discussed this article here or on the other thread, but I only had the abstract to look at. The commentary was very helpful...I'm pretty sure they will end up recommending rads for my R side (ant margin), but not my L (post margin)...we'll see! And I will be very comfortable proceeding with that if that is the recommendation. Something new I noticed on my path review from Emory for the R side - it was a small amount of DCIS and LCIS < 1 mm from the superficial margin, BUT, the LCIS was pleomorphic. Everything I've read said that is a different beast and should be treated like DCIS.

I will include the link to the abstract and will type out some of Dr. Carlson's most important comments in his response to other doctor's questions. If anyone wants the entire article and commentary, PM me.

Local Recurrence of DCIS after Skin-Sparing MX

"There were several questions pertaining to imaging of the reconstructed breast.  Generally, it has not been standard practice for several reasons.  Local recurrence after total MX for invasive cancer is almost always associated with systemic relapse.  Imaging these patients to detect earlier local recurrences would have no survival impact.  Detecting local recurrence after SSM for noninvasive cancer has the potential to improve survival.  As Dr. McMasters said, 'this is a potentially curable problem.'  In the breast conservation literature, half of the local recurrences of DCIS treated by excision and radiation therapy are noninvasive.  Imaging after SSM and immediate reconstruction has the potential to detect early, noninvasive recurrences."

..... (later)... (basically he goes on to say that mammo's are tough with TRAM's, due to fat necrosis, and the mammographer has to be skilled to avoid confusion with post-op changes.  However, he doesn't recommend it with implants, b/c most recurrences would be pushed superficially and would be palpable; rather he thinks MRI is more useful in this group)

"I agree with Dr. McMasters that radiation therapy has a deleterious effect on all forms of breast reconstruction.  That being said, it is hard to ignore that 11% or 2 of the 19 patients with close margins developed local recurrence."  ...(later)... "A close superficial margin is different from a deep margin.  The fascia of the pectoralis major muscle is routinely removed during the mastectomy and serves as a fascial barrier, especially in noninvasive disease.  Based upon our experience, I feel that adjuvent radiation therapy is indicated for close superficial margins.  Followup breast imaging is indicated in this setting."

...(later)...

"In closing, I believe that we have leaned to radiation therapy in cases of close superficial margins.  We now routinely excise the core needle tracts at the time of SSM.  We are studying the use of imaging in patients with diffuse microcalcifications who undergo SSM and TRAM flap reconstruction as well as patients who have close surgical margins."

dancetrancer

Hi all,
I had my follow-up at Emory Monday, but am still awaiting final recommendations from the tumor board about radiation. I will wait to give all the details on that once they are in.

In the meantime, something more shocking has come up. The medical oncologist from Emory called me yesterday to say that upon closer review of my slides they found a 3 mm area of invasion on my left side. My lymph nodes (3) that were taken were still analyzed as clear. My stage has been changed to T1a on the left. She now recommends I go on Tamoxifen to reduce the risk of metastasis, which she says is very, very low...but exists since I now officially have IDC.

I am dismayed that 3 other pathology reviews missed this. I know it's small, but...come on. I'm losing faith in the medical profession! This better not have spread in the 4 months that I have been hanging out unprotected. Rant over. For now!

Natters

I'm so sorry to hear about this recent news, dancetrancer. If it makes you feel any better, I have been on Tamoxifen since September and I'm doing just fine on it. I know you shouldn't have to deal with all that after the MX and the multiple surgeries, etc....it's just crappy news, just when you thought you'd soon be putting all this behind you. Fingers crossed that the tumor board gets back to you soon!

Nat 

dancetrancer

Thanks Natters!!!

laurakay

But you haven't been "hanging out unprotected--"  The 3mm is OUT of there.  It would definitely be a shock, but it doesn't change a thing about your prognosis. Hug.

dancetrancer

Thanks Laura Kay.  I was just inferring to the fact that I haven't been on Tamoxifen for the past 4 months to reduce the risk the risk that any stray cancer cells that might have escaped into my bloodstream prior to BMX could eventually take up residence elsewhere in my body.  It's a VERY small risk, to be sure, since my IDC was so small.  I'm not freaking out now.  I was just pretty shocked when I first posted.  Thanks so much for the support and hug!!! 

ZTeam

Hi Dance,

I'm so sorry to hear you've got a small amount of IDC! I'm sending you lots of positive thoughts and a big hug 

It is so scary about the change in the pathology and I'm with you on losing faith in the medical profession. My Paget's cancer of the nipple was first diagnosed by a dermatologist as 'friction'. I'm not a runner, so I have no idea what this doctor thought i was doing with my nipple, but he said it wasn't Paget's, it was friction. I didn't believe him and paid to have it privately biopsied. He was wrong, I was right. Sometimes it sucks to be right.

On my side, the radiation is going well. After my session tomorrow, I'll be halfway done. My skin started reacting from day 1, but I have almost no feeling in the area so it doesn't bother me much. Mostly I'm just more tired than normal.  

Take care,

Lisa 

dancetrancer

Hey Lisa, so great to hear from you and to hear you are doing well with the radiation so far!  And wow what a story about the Pagets and having to pay for your own biopsy.  How unbelievably smart of you to do that! And yeah, I hear ya on the sucking to be right, LOL. 

Thanks so much for the encouragement.  I just found out Tuesday night that they found yet another close margin, anteriorly, on the left side (this 4th pathologist is way thorough).  So now they are recommending radiation on the left, but not on the right (they said the DCIS is free and clear on the R, PLCIS is the close margin, but radiation is not indicated in that case).

Soooo...the big issue now is I'm not healed fully from my last fat graft - my PS had told me it would be ok by this time to do rads if I needed it, but the new breast surgeon at Emory (who is also a PS) had told me it would be potentially "catastrophic" to do rads to my newly fat grafted breast (extremely high risk of liquification or necrosis of the graft).  However, at that time he didn't know about my close anterior margin on the left.   He stated in our meeting that his recommendation against rads was related to the cancer location, not the potential cosmetic complications, and that "final recommendation comes with final path."  I'm waiting to hear back from him about how risky it is (from a cancer perspective) to delay rads maybe 1 or 2 more weeks.  It's probably not a good idea, since I'm already at the 4 month post mark, and this is the latest the RO's have recommended to start rads.  This is such a complete mess.   

Natters

Dance, that sucks that you have been putting yourself through reconstruction (fat grafting) and now you might lose some of that because of rads  I feel like you are just being put through the wringer lately! However, it is really good that you have all this expertise and thorough people on your side. It sounds like you are getting the very best medical advice, at least. Hopefully after this year, you will be able to put this all behind you...

Lisa, it is good to hear that you are getting through rads OK. I was able to keep working through rads but I found I'd be exhausted by 8pm or something ridiculous. I had no energy to work out or even go out to eat towards the end. I just wanted to come home and put on my PJs. You are going to love being done and not having to waste time going to and from the hospital every day!

ZTeam

Dance, I'll be thinking about you over the next few days and hoping that it will all work out for you. It's such a tough path to be on even without all the uncertainty and doctors not reaching a consensus. You have been so proactive about making sure you're getting the right treatment for yourself and pushing for an accurate pathology. I really admire you for that and I'm sure that that strength will carry you through whatever is next for you. For me, I found that once I made a decision to do rads, I felt a big sense of relief and a lot of the stress left. I hope that once you've got all the info you need and make a decision, whatever it is, you will feel that same sense of calm. 

Natters, I can't believe how much I'm sleeping! 10, 11 hours and I still need an alarm clock to wake up. I'm not working now, so that makes it easier, but I still can't wait to be done! Today I'm halfway done!

Best,

Lisa 

dancetrancer

Thank you ladies for the support, I really appreciate it!  I still haven't heard back from the 2nd PS about whether I should delay rads a week or two or not, but I decided I can't drag my feet too much longer waiting to hear back.  Soooo, I called the local RO this a.m. and told her I wanted to get the ball rolling.  I am set up for simulation next Tuesday.  They said it then takes 10 to 14 days (didn't know that) to figure out all the details from the simulation.  So, by that time I should have healed even more, so I think it is a really good thing I called to get an appt.

It's a big step though.  My stomach kinda turned when I made the appt.  Lisa, hoping once I get started I start to feel relief with moving forward like you did! 

dancetrancer

Well ladies, I had my rads simulation Tuesday, but they have now cancelled radiation and referred me to the MO b/c my 3 mm of IDC came back today as HER2+.  

So this is quite a change and not a good one.  Will be discussing chemo with the MO.  The silver lining is that b/c I had so much fear of rads and got so many opinions, the 4th path review found this small IDC and now I will be having proper treatment.  Sooooooo scary to think of what could have happened in a couple years if this had never been caught!  Scary enough to think of how I have been untreated for 4+ months. 

Natters

Oh man - I don't want to be happy for you with this latest news, but you are absolutely right. Better to treat this right now aggressively and then live a long, happy and fulfilling life. It would be the worst for you to go through a BMX and recon and rads, just to have this thing resurface somewhere else in a few years. You are such a tough and resourceful lady - you got this.

dancetrancer

Thanks Natters.  Guys, the plot thickens.  Check out this thread I just started...I think I'm gonna lose my mind! 

 http://community.breastcancer.org/forum/80/topic/781713?page=1#idx_2

bojo

Dancetrancer,

Am i correct in reading you had 4 different pathologies done on the samples?  I have never heard of that.  Did they do the Oncotype test also?  Now that your are HER2+ will that even matter?

Sorry you have to go thru all this. 

jo

dancetrancer

Yes bojo.  1st place showed close margins and did not feel I needed rads, so I just wanted to have it double checked.  2nd place found DCIS in my "prophylactic" side, too, (1st place had said benign) and small margins bilaterally, and recommended radiation bilat.  1st place, upon hearing this, wanted their own 3rd opinion review (which I did not request) - sent it off and that pathologist concurred with them.  Hmmmm.

Went to 4th place just to figure out what to do about rads since I had one strong "no" and one strong "yes".  They required looking at my slides, wouldn't accept other facility's reviews (I thought it was overkill, since I had 3 reviews already, but wow was I wrong).  This 4th place took my case to a tumor board and after closely looking at my slides they found the small IDC that the 3 other places had missed.

Well, does the HER2+ matter?  That is the question of the day.  Check my other thread I posted a link to.  

ZTeam

Wow, Dance, I'm so sorry to hear you might need chemo, but you're right, at least you're going to get the best treatment for you now. 

Take care,

Lisa 

Lolalee

Hi ya all, haven't seen any replies on this topic for a while.  Just wondering how everyone is doing.

I am due for mx next week for dcis 1cm, high grade to left side.  Chest wall margin after lumpectomy was 1mm deep so this is a huge concern for me.  No-one has mentioned rx after mx and it was only after discovering this site that I learnt it may be prudent to do so.  In fact some surgeons advised against mx so I had to push for that. Also one bs said that dcis is being overtreated blah blah and he recommended to just watch!  Can't believe that approach after reading dcis recurrence rates on these sites.

After reading dancetrance's slide being misread by so many path's makes me wonder how many of us out there with the same problem. It is so unbelievable how varied this all is and who can we really trust.  I am now really confused and in a state of panic!

dancetrancer

lolalee - don't panic...although I know that's easy for me to say since I'm through surgery, rads (I did well!) and chemo (rough, but I made it)...Yay!  

I definitely wouldn't just watch DCIS, I personally think the risk of it converting to IDC is way too high.  I have heard some say just watch it, it may never convert.  However, I can't imagine watching it...it would feel like a ticking time bomb in my chest to me.

I understand why you'd want a MX with only a 1 mm margin.  If it is at the chest wall, and they take the pec fascia, that is a barrier to DCIS (b/c it can't invade like IDC can) - so you wouldn't need rads in that case.  

Best wishes on your MX!  

Hope everyone else on this thread is doing well!