New to this--some questions

Julie--MA

Hi--

I have been lurking after learning on July 3rd that I have DCIS Grade 2, but now that I am recuperating from my lumpectomy yesterday (I don't know all the abbreviations yet!), I have some questions.  I can already see how helpful the board is, so I appreciate any feedback.  

I had to have a surgical biopsy two weeks ago (after a failed and frustrating attempt at a needle biopsy), and I know that my surgeon (a wonderful woman at Mass General) got all the calcs and apparently four cleans margins.  How hopeful should I be that she got the remaining two clean margins yesterday?  How common is it for a surgeon to not get clean margins during a lumpectomy and to have to go in again (for a third surgery)? 

Also, if she does get clean margins, what should I expect next?  Will I meet with my team--her and the radiation oncologists--immediately, or will they wait a couple of weeks or so?  

A lot of these questions stem from the fact that I am a teacher and am  trying to see how this will play out with the start of a new school year. 

Finally, what have been your typical lengths of radiation treatment been?  Also, how long between the final surgery and when the radiation starts?

I appreciate hearing about your experiences.  I know I could call my surgeon--she has been amazing--but this seemed like a good way to get some ideas and connect with this new community.

With thanks, Julie  

Shayne

hey julie - first, sorry you are going thru this but glad u found us here.  Lots of support and info.

As far as clean margins go - my surgeon said its typical to go back as much as 3x to get clean margins.  I was lucky and got it on the first try.  

As far as scheduling goes, that depends on your doctors schedules, vacation times etc.  I waited 6 weeks, which was fine as I wanted it to coordinate with my daughters vacation with her g-mother.  So it worked for me.  I also had one week internal radiation which needs to be scheduled soon after surgery.  Someone else might know more about traditional 6 week radiation, standard time.  Having that 6 weeks before surgery let me schedule appts with Radiologist etc. and get everything in line.  Typically you dont see an Oncologist until AFTEr surgery.  Oncologist and Radiologists like to have the pathology report from surgery before they proceed with scheduling treatments.   If you know who you are using, you can call these doctors yourself and set up appts in advance.  I met with my RO so I could meet her and find out more about what to expect.  But they wouldnt let me set up appt for treatment until after path report

Everyone is different.  Make some phone calls and youll find out more.  Good luck!  Most people work thru their treatment, so it should work out for you! 

ej01

I have been told that 20%-30% of the time they have to go back in because margins are not clean.  You will get a biopsy report from the surgery that will confirm the diagnosis (grade, etc).  

Radiation treatments vary.  Most people will full breast irradiation seem to get 5-6 week treatments, 5 days per week.  There is also a 3 week accelerated program for some.    There are some  people (like me) that are good candidates for partial breast irradiation...eather internal or external.   (Mine was external, but it seems that this treatment is not offered to many women outside of clinical trials these days).  Partial breast irradiation is generally 5 days 2x per day.   They normally wait a few weeks after surgery before starting exernal radiation.  

If you will be doing Tamoxifin, it will probably start after radiation is complete.  

Shayne

Julie - if you are going to a breast care center or hospital.....they usually have a patient navigator person who can help you with making appts, referrals, and info.  The person I called was really super helpful!

Julie--MA

I can't believe how quickly so many people have already posted--thank you!  I can't tell you how much it means to me, though I imagine you all know all too well.  

I do wonder about working and radiation.  I know in theory it should be fine, because I know it doesn't have any of the same effects as chemo, but I worry because, as a teacher, I have less flexibility during my day:  If my 6th grade English class arrives at 10:40, I need to be there!  :-)  

Thank you for all your info so far; I will check back in a bit!  

Julie  

Shayne

Everyone is different as far as how they feel during treatment.  I had one week rads, twice a day - and I felt fine.  The week after I was pretty fatigued.  But I know people who sail right thru 6 weeks no problem. 

Good luck! 

anastasia31

Hi Julie - wow, I can't believe how quickly they fast tracked your surgery after getting the pathology results.  I was diagnosed mid May and still haven't had surgery yet!  But I did meet with my surgeon and he said they usually wait about 3 weeks after surgery before starting rads.  They want to make sure you are completely healed.  Also he is not referring me to an oncologist as he said he can direct my treatment.  Which I am very excited about as I did not have a good experience with the first oncologist I met with.  Liking your doctors is huge so sounds like you were very lucky with your surgeon.  Good luck to you.  I go in for my surgery in 2 weeks.  Looking forward to getting it behind me.

lane4

Julie - Welcome to this board; I'm sorry you had to join this club, but I know you will find a lot of support and a wealth of knowledge here. I am a teacher and I worked throughout the seven weeks of radiation treatments. My treatments were scheduled late in the day so I could go after school. I had to leave a few faculty meetings early, but my administrators were very understanding. I did get a little tired and uncomfortable toward the end, but I just tried to get in bed a little earlier than usual. Please keep us informed about how you're doing. Wishing you all the best.

BLinthedesert

Hi Julie,

Welcome, and sorry you have to be here.  Regarding timing ... I waited 4 weeks between surgery and beginning of radiation.  I had 5 weeks of radiation.  I am a faculty at a university, and timed my treatments (surgery and radiation) for after the semester ended.  I took a full week off after surgery -- I felt better after 3 days, but was still a little too sore and weak to do too much until about the 7th day (my surgery was sort of extensive because it was large - ~5 cm and involved the chest wall).  I did not have too much problem with radiation until the last week - and then I did end up taking a couple 1/2 days.  It does take a big chunk of time to go in and have treatment every day -- the treatment itself is pretty short ~15-20 mins total, but travel time and once/week doctor visits after treatment I would say it cost me an extra 6 hours/week.  I don't know where you are, but if I were you I would ask about either: 1) internal radiation (what Shayne had - which is 5 days) or 2) the Candian protocol (16 treatments), or 3) there is some protocol that does 2 x day for half the time -- I have not seen a lot of women get this, but I have read about it.  It really varies by person how you handle radiation treatment; although I had a relatively easy time of it, I am not sure I would have been able to teach my two classes and fullfill all my research duties while undergoing radiation.  If at all possible, I would suggest 1/2 days a couple days a week the last 2 weeks if there is anyway you can swing it.  I found that Monday/Tuesdays were "good days" (after resting over the weekend), but by Thursday/Friday I was pretty tired.  The fatigue is weird, for me, it came in "waves" - and I could actually "push" through it, but if I did that too often I really paid for it the next day.  I was asleep by 8:30PM and would get up at 5:30 feeling like I did not sleep at all.   That said, I did run every day through treatment, and except for the last week, I did not have too many "bad" days.

Regarding doctors.  If you are ER-positive and will be taking tamoxifen, then a medical oncologist will likely be your "point person" for the next 5 years.  If you don't take tamoxifen than either your BS or RO (radiation oncologist) will follow you for 2-5 years (they order your follow-up mammograms/MRIs etc and do a breast exam every 6 months or so).  You will have life-time follow-up, but exactly who does this varies a lot.  My BS says he will be my point person for life, although my RO said that she will be seeing me for the next few years as well ... 

 Good luck!! 

Julie--MA

Thank you all for so much helpful information.  It does sound, from your schedule/experiences, as if radiation will likely overlap with my school year.  (It sounds as if it may start mid-August or so but continue beyond.) It is helpful to hear from those of you who are teachers/ professors about how you managed with your schedules.  I do work at a remarkably caring school, so I know that they will be accommodating, but it would just be a whole lot easier not to have to do this, needless to say!  

I intended to write more but am feeling pretty sleepy from yesterday's surgery and pain meds so think I may log off for awhile.  In the meantime, thank you so much for all of your caring responses.  

 Julie