Difficult decisions and so many questions

speech529

Maybe I just need time to digest all of this....my mind is spinning.  I saw a BS last week and had BRCA test (results not in yet).  Initial thought is for lumpectomy with radiation (or not). I saw the radiologist today--of course he recommended rads (30x).  I also saw a PS.  My breasts are small with the left one (AA) noticeably smaller than the DCIS right breast (A/AA).  She told me that after surgery I would probably be even and would not need any reconstruction.  Maybe I should be rejoicing in that last bit, but I am not pleased at all that I will end up with even tinier breast. 

I am concerned about radiation therapy and its long-term effects and concerned about the cosmetic results.  If I have radiation I cannot have implants. I am concerned that if I don't do radiation I put myself at risk. 

Has anyone had lumpectomy w/radiation then had autologous reconstruction on the lumpectomy side with an implant on the other?  Is that possible? 

I am feeling so angry about all of this....all that has to be done and then end up not liking the way I look.  It feels good to get this off my mind.  I am usually very upbeat and optimistic.  I am upset with myself that I am so "vain" about my body. 

sweatyspice

Being "vain" about your body in this situation is completely normal and reasonable, please don't be angry with yourself about that! 

I'm really not sure whether you'd be able to have autologous reconstruction after rads.  Did the PS that you saw have an opinion on whether it was possible, or did they just say you'd be even and leave it at that? 

I think your best bet is to consult with a few PSs who do the type of recon you want, and posting your question in the reconstruction area of this site might get you more replies. 

KAR

Speech:  I have not had radiation but I wanted to tell you your feelings and concerns are understandable.  I can tell you that after my lumpectomy on my size A breast, you could barely tell anything was done.  The BS removed about 3 cm.  This surgery is very easy and I would definitely recommend trying this before going to the next step.  Take this journey one step at a time, trust your Drs if you feel comfortable with them.  My margins were not clear after lumpectomy so I would have had to do re-excision and rads which in my case would have left me with deformity, but I tell u this only because I tried the less invasive first, then moved on to the Mx.  I agree with the above post regarding reconstruction after rads, post question to reconstruction site.  I know recon is more difficult after rads but is still possible.  Its ashame that you PS didn't explain how radiation would complicate reconstruction but do some research and then you can call back with more questions. 

Breath, you'll do fine.  You are not vain we've all been where you are and it stinks! 

dsj

This is a very stressful and scary time.  For most of us, as we began to learn more about the specifics of our DCIS and our treatment options, we felt more in control.  It's certainly been that way for me. 

 I don't think you can make a definite decision about radiation until you have had your lumpectomy, as  you will only be advised to skip rads if you have a very small low grade tumor and very wide margins--and you won't know that til the lumpectomy is over and you have the pathology.  But for most women, lumpectomy does mean radiation. 

I also have small breasts, and I had a lumpectomy.  And honestly, except for the scar, I can't tell the difference.  I am doing radiation, so don't know what the long term cosmetic effects will be.  But for me, it was worth it to avoid a mastectomy, which I didn't want because I didn't want to do reconstruction. 

 there's lots of support on this board.  Everytime I got upset about something or other, there was someone who had also experienced it and who jumped in to help me. 

flyingdutchess

This is a case of you can't win for losing.  I had DD breasts.  Now thats what the right is.  I am not sure what the left is after 3 lumpectomies to get all the margins clear but I am definately lopsided..  The whole DCIS thing is an attack on our bodies.  There is no right answer for what you should do.  I agree with the above comments about seeing a few PSs.  Intellectually we all know we are better off after treatment, but in our guts  we feel we are being mutilated.  Its just a lousy situation that we are stuck with.  Let us know what you decide.

speech529

Thanks for your replies.  This has been a roller coaster ride. I know that I will be fine in the end but the process is so difficult, confounding and it upends your life. 

I will post on the recon site, too.  I will see my BS in a week to discuss the next step (probably lumpectomy).  I am really worried about radiation effects with or without consideration of reconstruction.

I apologize--I did not add that the PS did inform me of the complications that radiation poses for reconstruction. I guess that is what is upsetting is that the radiation poses so many complications.  I am worried about long term effects on the breast tissue. 

Thanks so much ladies!

mom3band1g

Just more info for you...if you have rads you can have implants.  I just had a mast with tissue expanders.  We found out after my mast I would still need rads.  This just puts off my exchange surgery...I hate that but what can you do? 

Deirdre1

This is one of the most difficult times after dx and vane is not what you are - you are a human in peril who wants to be whole.. it's perfectly reasonable!  I've said this so many times I know but it is so true each time - now is a time when you need to hear you own voice clearly!  We, especially as women, tend to give heavier weight to everyone's voice but our own..  In order for you to feel more confident with your decision (which ever decision that is) why not add a therapist to the list of "specialists" you are now dealing with..  That therapist job should be to help YOU know what you really want to do!  Best of luck Deirdre

speech529

Thanks again for all the information, encouragement and advice.  Deirdre...I have a lump in my throat right now after reading your  comment about "your own voice" and I like your suggestion of talking to a therapist.   I have a contact--but did not think I would need it.  I think this is a great idea.  I spoke with a good friend today who finished treatment for BC about two years ago.  She said this same thing about listening to myself FIRST.

 I have my next appt with the BS on Wed.  Will post after that.