DCIS, BMX/MX, and radiation ladies

julianna51

Sometimes I feel like the lone ranger out here with my DCIS diagnosis, BMX AND rads.  I know there are many more of you besides me.   I'm hoping that maybe we can all connect and have this forum to discuss our treatment and anything else going on.   I hope that this is not the wrong area to post this but figured the DCIS forum was a great place to start.    Hoping to hear from you ladies!

Juls

mom3band1g

well, I'm here..... but I think you are right.  There aren't taht many who have had a mast and still needed rads for DCIS.  I felt a bit cheated.

julianna51

mom3band1g - Yes, definitely not fair that we had the BMX and still had to have radiation!   There must be more of us out there.  How are you doing, I haven't seen you in awhile - we must be frequenting different threads.  ;o)

iLUV2knit - I was diagnosed with LCIS in 2002 and had spent the last 8+ years worrying everytime I went in for my mamogram, had many biopsies and then when this DCIS showed up, we thought it was much bigger than it actually ended up being.   I didn't think they would be able to get it all in a lumpectomy and I knew with the LCIS it was probably only a matter of time before I had more problems.   I have, overall, been satisfied with my decision but the rads disappointed me, I didn't think I would have to have them.   It is a lot to think about, having a MX/BMX.   You have to remember you lose the feeling in your breast(s) and won't have the sensations you have now.  

mom3band1g

Julianna51- are you done with rads?  How are you doing/feeling?  I can tell you from experience to stay up on your stretching after rads.  I really feel it if I go more than 2 days without exercising my arms.  Kind of makes me mad!  How's your fatigue?  Hope you are doing well!

julianna51

mom3band g - Thank you.  I am almost done with the rads.  Today I start the  final phase with a series of 8 boosts.   So far, it has been pretty easy, I have just a bit of pink and the fatigue is manageable.   Thanks for the input on stretching - I can see what you mean.   I'm planning on getting back into my regular yoga routine soon as I can after rads are done and I'm feeling more like myself.

Beesie

julianna, you may not find too many other women here who've been in your position - those who've had a mastectomy for DCIS and who still required radiation - but your numbers are increasing.

When I was diagnosed (6 years ago this week), it was very rare to see someone with a MX for DCIS who was given radiation. I remember talking to my surgeon & PS about this.  They both raised the possibility of radiation being required after my MX.  However it wasn't because of concerns about close margins on the DCIS but rather because I had a microinvasion and therefore there was a risk that there might be nodal involvement - and that would have changed the treatment plan and moved me on to radiation.  At that time, radiation wasn't considered necessary for pure DCIS after a MX, no matter how close the margins. However over the past few years there have been studies that have shown that recurrence risk can increase substantially for those who have close margins after a MX for DCIS.  That's why the protocol is changing, and that's why over time I think you will see more women in your situation.

So while you and mom3band1g may feel like you are alone out there, and may feel a bit cheated, remember that your treatment was based on the latest research.  And it puts you in a better position than those before you who had close margins after their MX but didn't get radiation.   

mom3band1g

beesie - we've missed you!

Julianna - glad it's going well.  I think I felt the fatigue the most after I was done!  My PT person said the affects of radiation generally peak 3 months AFTER you finish!  I think she was right though.  

julianna51

Beesie - Thank you for your post and I know you are absolutely correct - and it is good for me to hear it again from you.   As hard as I fought against rads, they have really been quite easy to get through.   I anticipate that it will all continue to go smoothly.   

mom3band1g - I've felt more fatigue this week than I have before.  Nothing that completely wipes me out but I'm feeling it.   Amazing that it can be 3 months before the affects peak!   I'm really hoping to get back to a more normal feeling soon.

Kim137

Hello ladies!I'm 31 years old, single mom & I have just been diagnosed with Grade 2 DCIS....at least for now, my MD says my diagnoses may or may not change after we get the final path from the mastectomy. I've opted for bilateral for peace of mind. I have an appointment with a PS next Friday to discuss reconstruction options. Although my MD does not feel that radiation will be needed, I'm worried that may change after final diagnoses. What have your experiences been? Reconstruct immediately vs. Delayed reconstruction? Does radiation damage the TE?

julianna51

Hi Kim137 - I'm so sorry you have to be here but glad to hear that you caught this early and it looks like you are only dealing with DCIS.   I hope that your BMX goes smoothly and for no need for rads!!!   As you can see by posts above, sometimes rads are necessary.   My BS didn't feel like I did but sent me to a RO to be sure.   I saw 3 different ROs and they all recommended rads.  Broke my heart but I have to say that overall rads have been pretty easy, although inconvenient going every day.   I had "immediate" reconstruction as in I had TEs placed at the  time of my BMX.   Once I found out I had to have rads, my PS worked with me to get my fills completed in time before rads started.   My RO designed my radiation treatment to work with my TEs to reduce the chance of any bad SEs that might interfere with the reconstruction.   The jury is still out on that one as I have 5 remaining sessions to complete but I have to say my skin has held up so well and so I am hopeful that internallly it is the same.

I'm happy to answer any questions you might have.   I thought when I started this process that I could get the BMX, do the reconstruction and move right on with my life.  In reality, it has not been that simple but it has not been difficult either....it has just challenged my assumptions.   I will recommend to you that you don't read too many threads that don't have anything to do with your diagnosis - it can become overwhelming and make you worry about things that you really don't need to be concerned with.

Big hugs to you!

Juls

julianna51

Beesie - After reading the thread on DCIS statistics I feel even better about having had the radiation.   Thank you for sharing all your research and knowledge.

mom3band1g

I agree! 

Lolaparkwood

julianna51

did your surgeon give you the choice between the diep flap and TE's?  I feel that I want the TE, but the surgeon seems to be pushing me towards the diep flap as i will be having radiation.....Just curious to know what your surgeon's opionion was?

thanks

mom3band1g

My surgeon said he was keeping the flap surgery as his "plan B" if my Te/implants should fail.  My plan B was different than his though!  If I had had failure I would have gone with no recon. I really did  not want to 'mess' with my muscles anymore than I already had.

sherylh72

Hi Kim137 - you and I seem to be in similar places right now. I was diagnosed with DCIS, grade3. Choosing BMX for peace of mind also. Told that if DX doesn't change I won't need radiation.  My fingers are crossed that my lymph nodes come back negative. I'm scheduled for surgery 10/7 and having tissue expanders put in at the same time. My PS said just in case I end up needing RADS she saves the Latissum flap as a backup. 

julianna51

sherylh72 - I hope for you the very best outcome with your BMX.   My SNB came back negative and the BS only had to take 2 nodes....all made me very happy.   My PS said he could use the Lat flap if I have complications but I'm confident that all is going to go well when I finally get to my exchange.   I only have 2 rads to go and my skin is doing amazingly well.

Lolaparkwood - I responded to your PM.

BlairK

Dear julianna51 - My wife is at the decision point of mastectomy and immediate reconstruction versus lumpectomy and radiation.  Both options include sentinel node biopsy.  The biopsy report is DCIS, Grade 2, some comedo necrosis with suspicion of microinvastion, ER positive, PR negative.  The BC surgeon estimates from the mammogram that the DCIS covers 25 to 35 percent of the breast.  We were told that 10 percent of mastectomy patients will require radiation and 20 to 30 percent of lumpectomy patients require a second lumpectomy.  Taking this all into account, my wife prefers the mastecomy and hoping for the best.  I will continue to read your thread and good luck.  My wife's surgery will be some time in October.

Kim137

Sheryl72- hope your surgery goes well! I had my sentinel node biopsy done before my mastectomy. Node came back showing micro metastasis and isolated cancer cells. Will know more after my bilateral mastectomy October 13th. Keep us posted on your outcome and recovery. Thinking of you!

Kim137

Juliana51- this is a great thread! After receiving the news today that my sentinel node biopsy showed isolated cell micro metastasis, the reality of radiation may be hitting me all to soon! I too thought I could get thru the BMX, TE and exchange and move on with my life....seems it may be more complicated than just that. My MD told me not to fret, that it could be cells from my previous biopsy. We won't know anything until after my BMX 10/13. I was a little concerned that he says we will not do an axillary node dissection, but instead wait for the path report from my breast tissue and nodes removed from breast/chest area. Apparently there is a great deal of controversy over this....lucky me! Ugh! Wish I could just have a "simple" diagnoses....lol! ( I realize the ridiculousness in that statement!)

julianna51

Kim137 - Hoping that your BMX goes well on 10/13 and that you get great pathology reports.  Always seems to be some controversy over something or other doesn't it!   Anyway, take care of yourself this week and try not to think about what "might" happen too much.  

dancetrancer

Hi all, 

As of now my BS is not recommending rads, but I am getting a second opinion on my pathology.  My DCIS covered ~60% of my breast and the report says the DCIS appeared close to the posterior resection margin "however, evaluation is difficult due to cautery artifact."  There is no mention of how many mm of margin is there.  So I will know more after my second opinion, but thought I'd do a little research ahead of time, just in case.

Beesie - I read your post: "However over the past few years there have been studies that have shown that recurrence risk can increase substantially for those who have close margins after a MX for DCIS."  Would you mind sharing the links to those studies, if you have them handy?  If not, I'll go find them - just thought if you had them handy it would save me some research work.  Thank you!    

And Juls, did you share your story of why you needed rads?  Didn't see the details above - was it due to close margins, and if so, how close were yours?  Thanks!   Oh, and I would love to hear anyone else's story of why they needed rads after MX/BMX for DCIS.  

dancetrancer

Just wanted to say I read another thread and found the link to the research Beesie - thanks for posting it!  Reposting here for those who may be interested in the abstract:

http://www.ncbi.nlm.nih.gov/pubmed/18954711

dancetrancer

Hey everyone I just found a nice summary of the article I just posted, written by the American Cancer Society.  

Conclusions: What did the researchers say their study results mean?

Patients with margins of 2 mm or less who have any additional unfavorable features such as having high-grade disease, comedonecrosis or being under the age of 60 are at particular risk of local recurrence and might benefit from radiotherapy after mastectomy. However, additional research is needed to confirm these findings.

It is thought that half of local recurrences will be additional DCIS and half invasive cancers, this belief by other long term studies of breast cancer. However, in this small sample, looking at these special parameters, all the cases of local recurrence were invasive. This makes the recurrence more dangerous.

https://www.cancerfacts.com/home_studyreport.asp?cb=266&litid=374 

julianna51

dancetrancer - Hi there!   I had rads because of narrow anterior margins and grade 3 DCIS.  Beesie has very interesting and valid points.   I am satisfied with having radiation done and have no regrets about it.  I fought it all the way but accepted that it had to be done and it really went by quite fast and with minimal SEs. 

Microfat grafting sounds interesting.  What all does that involve?

dancetrancer

Julianna - thanks for the reply!  I finally got my slides sent from Miami via fed ex this morning - my Alabama docs should have them by tomorrow so then it will just be some waiting until I get their second opinion on the path.

My experience with microfat grafting has been great so far.  I had my first graft done at the same time as my BMX.  The PS did lipo suction from the front of my thighs and then injected the fat in small aliquots into my pectoralis major muscles to form a small breast mound.  Right now I would say I have about an AA.  I had lots of pain in my thighs from the lipo, especially the first 24 hours, but it was worth it!  I will have 2 or 3 more lipo/grafting procedures before I get to the size I want.  They can only inject a certain amount of fat at one time b/c they need a matrix (scaffold of tissue with blood supply) to inject into so that the fat survives.  The pec muscle serves as that matrix for the first surgery; for the next surgeries I have to wear a special device called a Brava that expands the tissues and creates the scaffold for the next grafting.  It is a big time committment (wear it 10 hours a night for 4 wks), so you have to know what you are getting into.  I'm really happy so far - my results are very natural with very few scars.  I was afraid of implants and did not qualify for DIEP (not enough stomach fat), but I have enough leg fat for the microfat procedure, so it made sense for me. (sorry for the thread hijack!) 

julianna51

Dancetrancer - you didn't hijack the thread!  Thats great and interesting information.   I have heard of other women getting fat grafting on top of their implants but had not heard of total reconstruction with it.  

I'm going to just have to hang tight and be patient now waiting on my exchange surgery.   I can be patient if it means getting the best result!

mom3band1g

Julianna - are you done with rads?  I think you must be so congrats to you!  Remember to keep stretching especially now that you're done!  How long is your ps telling you to wait before your exchnge?

julianna51

mom3band1g - Yes!   Done with rads as of 3 weeks now!  Woohooo!   It all went really well, no burning, no blisters, just pink.   Of course I think  there is lots of burning inside....but all in all it seems really good.   Getting back into my yoga now that I'm getting my energy back so that will help with the stretching.   PS just tells me to be patient now....I am happing waiting until at least March but hopefully not much later than that.

How are you doing??

dancetrancer

Julianna - so glad to hear you are doing so well after rads!  

undercoverebel

No rads but considering it-slightly. The bmx really helped w/my prognosis. Especially as i'm er+/pr+. I don't think i'll do rads as the recon is next and it seems problematic for the recon recovery. As well as the risk of cancer near/on my lung after 25 rt's. And the fact that they seem to think i'm not a great candidate. I had an early type,non-invasive and yet i'm not sure. I had a close margin 0.1cm if i'm reading this path correctly. That is the ONLY reason they even brought the rad subject up. Yet said they don't recommend it because studies show it really isn't helpful in my early case. Of course being close margins and youth put me in a higher risk category for recur they also said. Just when you think you have it all figured out they throw you the curve balls. Any tips?

dancetrancer

Hmmm...undercoverebel...that is definitely a curve ball and a tough call.  According to the study I posted: 

Patients with margins of 2 mm or less who have any additional unfavorable features such as having high-grade disease, comedonecrosis or being under the age of 60 are at particular risk of local recurrence and might benefit from radiotherapy after mastectomy.

So you have a 1 mm margin and are young (under 60, I presume).

You do not have the risk factors of high grade disease, since you had Grade 1.  Did you have comedonecrosis?

What is this risk of cancer on your lung after 25 rt's?  And why do they say you are not a great candidate?  And where is the 1 mm margin at?  (i.e. near chest wall, etc.)  How old are you?

Such a tough call.  Hopefully others will chime in with their thoughts, but my gut reaction is if they aren't recommending it, I'd likely follow my doc's opinion.  You may want to get a second opinion, however, to give you peace of mind.