avasmom

Sadie- 

You are exactly right.  I think all of the old stress feelings of waiting for results came rushing back.  It helps to think about it in that way.  Gives some perspective.  I have not gotten the results yet, so I am assuming this is a good thing.  I called the other day and they said Tues or Wed, so today I should get the call.  I really think that if something showed up they would have called me already.  Thank you for responding to me. 

Maureen,

I don't have the studies I have viewed available to me right at this moment; however, according to my research prior to making my decision the result is basically the same if you pick Mastectomy or lump/rads.  Your reoccurance rate is about the same.  I was also assured by my rad onc that the risk is extremely low for damage to the lungs or heart.  I was not really afraid of that because they are so precise with measurments and remeasuring and making sure the beams are hitting exactly the same spot every day.  I did have some fear about the rads scattering remaining cancer cells to my other side as I've heard of this. 

Even though I ended up with a large area of DCIS (enough to have a mast) I went with a lumpectomy (had 2).  If I had known before the 2nd procedure that I had as much as I did, I would have opted for a mast right than and my surgeon would have as well.  In retrospect, I wish I had a mastectomy.  I am 1 year out of rads and facing reconstruction because they took out so much there is a noticable difference in my breast size.  I had implants prior to dx and I now have capsular contraction.  I'm concerned about how my tissue will respond to surgery.  It's a big decison, but you have to be ready to deal with limiting your options after rads.  I am only 38 and I had a high grade DCIS with comedo necrosis so I am at a higher risk for reoccurance....I think I made the wrong decision.  For you, it's a much smaller area and it's not high grade.  I feel for you because your decision is not as clear.  I am surprised that  your docs are saying have a mast.  Most women on here seem to have to fight for it if they have your path report.  There is no right answer in your situation.  It has to be what feels right to you and I know that's the hardest part of all of this.  I understand the insurance issue as well.  I am waiting on my recent MRI results because they are watching a suspicious area on my other breast to see if I need a biopsy.  I have also met my deductable for the year and I'm hoping to get everything out of the way before Dec 31 if needed....but don't let that rule your decision.  In the long run, you have to live with your what you decide.  Good luck to you!

I'm shocked that it's going to take 45 min for each side.  I think the first MRI I had took about 30 minutes, but that was the max.  When I had a full body MRI they split it into 2 different days and they were about 45 min each, but for only your that seems long. 

Yes, I am sure your correct that the reason you didn't get an MRI to begin with is because of the cost related to insurance.  My docs had to fight insurance to get mine the first time but no issue since (knock on wood for this last one).  Hope you don't have any problems with insurance covering it for you.  I agree with you about the risk...not even an issue.  Good luck on your MRI

Dianna,

I had some pretty bad reactions to rads, swelling and pain were a couple of them.  I was never told it was lymphadema, but yours might be totally different than mine was.  I had A LOT of pain, blistering and finally 2nd degree burns.  I am also fair complected, so I don't know if this is a factor...I've been given different opinions on that.  I can say that these side effects are not common and they do go away.  I had an incision right next to my niple, so my boosters at the end of the 33 days of rads were directly on the area.  That part was not as bad as I thought it would be.  The doc should be able to give you creams and I was given these gell like pads to wear over the radiation area so clothing did not touch it and cause pain.   Wish I could remember what they were called, but ask about it.   I thought I would be scarred for good.  I am not.  It does get better.  Do watch the swelling because if it is Lymphedema, you need to keep that under control.  For me the swelling went away after rads...maybe a month later.  The pain starts to go away almost immed. and any burns heal up pretty fast.   I hope you start feeling better soon!

chessiegirl,

I wish I could wave a wand for you and make all of this worry and wait go away.  For me, that was the worst part of being diagnosed with DCIS.  Our dx was very similar.  I had "extensive DCIS, grade 3, comedo necrosis, micro calcs remaining and ADH remaining" after the first lumpectomy.  The "extensive" part for me meant a very large area and not multi focal, but I'm sure that can vary.  Going in for the second lumpectomy my surgeon was pretty certain they would find a worse case scenario.  They did not but instead cleaned up the remaining DCIS and got clean margins.  They also did a SNB and the nodes came back negative.  My point is that it is more likely that it will remain a DCIS dx.  I know that does not help the stress or worry....unfortunately, that is somewhat unavoidable.  Try to make yourself busy even if you can't seem to work.  I cleaned like crazy until I got results!  I hope that you final path report comes back good like mine and I will keep you in my thoughts. 

Readeram,

I'm sorry about how you are feeling and I can understand why. We have very similar path results.  Rose it correct, it's not typical to have a mastectomy with such a large amount of DCIS.  Did you get clear margins? 

 I felt confused and just kind of lost after my diagnosis and I had doctors who tried to explain things.  It's overwhelming at first, but don't worry...you will start to fill in the blanks as you go along.  I find that a list of questions works (trust me, we all bring in "the list"...lol) and many women bring in tape recorders or a friend/family member so that you have a second set of ears.  Typically, women meet a "radiation oncologist" as well when you get set up for radiation.  This doctor should be able to answer some questions too.  As for the er/pr testing....it does not always show on your path report.  Mine came in a seperate report that I didn't ever get a copy of.  If you are going to the same hospital for your oncologist that you had your surgery at, the onc probably pulled your test results from the computer prior to your appt.  It does not make sense that you can't take the Estroven if you are negative, but perhaps there is some reason I am unaware of.  I would make an appt to go over your questions and please don't be afraid, we all feel that way and that is what you are paying these doctors for. 

I used this web site to ask as many questions as possible when I was diagnosed. The women are wonderful and full of valuable info. 

New Day-

I am so happy for you!  Great news!!  

Coming up on a 6 month re-check from my last MRI that showed something "slightly" suspicious on my unaffected breast.  I have a MRI scheduled for Nov 2.   I really have not worried about it because I know that if it was a big area of concern they would have biopsied it 6 months ago.  A couple of weeks ago I started get pain in my affected breast next to the incision.  I now have a thickened area that was  not there before.  So....I'm in panic mode.  The rational part of my brain says everything is fine and I'm worrying for nothing.  But who listens to the rational part of their brain when they have an upcoming MRI?  :)  After partial mast I was left with remaining ADH.  I don't talk about this to my family because I don't want to worry them over nothing.  I'm sure I'm overreacting....but that doesn't help me to calm my fears.  Wish I could fast forward 2 weeks and get this over with. 

Pam-

I promise it will get better.  I was dx in May of 2006 and finished rads in Oct of 2006.  Every month that went by I felt better.  Listen, we all know that we are fortunate that we were dx with an early stage breast cancer instead of a more advanced disease.....but we all need to stop apologizing for it.  For a long time I felt guilty as well....but why?  I went from living my normal life to having 2 surgeries, 6 1/2 weeks of rads, Tamoxifen for 5 years, visits to my surgeon and onc every three months now and screening every 6 months via mammo and mri.  What do we have to feel guilty over...it all stinks even if it could have been much worse!  As women we are pressed to do it all and take care of everyone else.  It's ok to let your guard down, take the time to get through this and understand what you are feeling.  These feelings are all normal and it takes time to work through them.  I still get spooked a little when it comes time for my screening....  This month I have to go through another MRI for a re-check on something they are watching.  I think most women worry and wonder at times like this even if you know it's most likely nothing.....but I've learned it's ok to feel that way.  I know it will pass and I will be fine.  So will you.  :)

YES, get the MRI.  I am guessing that even if the Mammo does not show anything they will want to do one if there is a lump being felt.  Also, Marin is correct...they typically do an annual MRI for high risk (such as previous dx) patients.  I had my annual one last spring and something slightly suspicious showed so I am going in for another one this month (6 month re-check).