June 2010 Rads

Barbara, I'm just popping in here to encourage you to do whatever it takes to eliminate the breast cancer beast -- yes, lymphedema is a risk, but the enemy here is the breast cancer. Not everyone will develop lymphedema, no matter what treatment they have, so no reason to assume you will. Instead, as kmom suggests, a referral from any doctor on your team to a well-qualified lymphedema therapist will give you the reassurance you need to move forward. Besides baseline arm measurements for future reference s/he can give you individualized risk reduction ideas, teach you a prophylactic lymph massage you can use yourself, and fit you for a compression sleeve and glove to use during rads and for travel or exercise.

Here's a web page about finding a well-trained lymphedema therapist near you:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

And here's one with suggestions for ways to reduce your risk:

http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

Lymphedema is no fun, but there are plenty of us here who have it and are happy to help you find the information you need and support you through this difficult time. There's a lymphedema forum here at breastcancer.org just for that purpose. Feel free to come over and ask any questions you have. Lymphedema is doable -- please tell us how we can help you deal with the risk.

Be well!
Binney

Had my 3rd round today.  So far pretty uneventful procedures.  But, what did bum me out was that they told me no swimming.  The nurse said that I could probably swim this week, but once my skin start to show any signs of the radiation, it is best if I don't go in a pool-chlorine can dry your skin, or a lake-they worry about infection.  This is such a bummer for me, because we have a pool and I have a 3 yo and 4 yo that love to swim.  I know this won't be forever, but man, I am really getting tired of it all.  Okay, my rant is done.  3 rads done, 30 to go.

V

So glad to happen upon this forum.  Although I don't officially start rad until the 2nd of July, I've already been through the simulation and tatooes and scan to get things mapped out.  I just finished 6 months of chemo: 4 FAC cocktails 1 every 3 weeks, followed by 12 weeks of taxol.  I've got an appointment with my onco on Monday and will be starting on an estrogen supressor, just can't get the name into my brain right now...starts with A.

I, too, am trying to gather all the things that I might need in prep for the effects of radiation.  Another survivor suggested Emu cream, said it worked wonders, but mostly I hear about natural Aloe gel being the one everyone uses along with Vit E.  I'll go through my list and repost all the suggestions that Ive been given in hopes they will help all of you.

The radiologist did tell me that recoup time will be around 4-6 months as I'm following chemo with radiation, so have all fingers and toes crossed that the fatigue won't hit too badly.

blessings and light,.

Diane

Hi ladies; I'm new to the group.  Had my simulation on Monday with three tattoos and CT scan.  Will start rad's next Wednesday, June 16 for 33 sessions.  I've been dealing with surgeries since April when I went in for LCIS and ALC only to find out afterwards that the margins showed IDC so back to the operating room in May for another lumpectomy and SNB.  Fortunately all clear so only have radiation to do.  I asked about lotions, etc but the simulation tech said that the nurse would go over all that with me on the first day.  Is this typical?  Not sure if I should be getting a few things together now rather than try to gather it all after my first treatment.  Any suggestions would be appreciated.  Thanks much.

Mouse6-good to hear about the swimming.  It was the nurse that told me it was a nono, so I will be seeing the Dr. on Monday and I intend to talk to him about it.  thanks

Irpabon,

I was given biafine (prescription) and I did pretty well...there were also days that I needed to use hydrogel by skintegrity (given to me by Rad Nurse.)  I did have some days where it felt more like burns...the hydrogel has aloe in it.

I am VERY fair skinned, but I do tan amongst my freckles...I did much better than I imagined I would.

 hope this helps...and yes, I did have breast warmth, but the most was red below my breast (have expanders in), and red/ruddy armpit which is getting much better two weeks out of completion.

traci

Hello June Rads group!

Had my first Rad treatment out of 33 today! I am 48 and have both DCIS and Microinvasive IDC; lumpectomy (April) and re-excision (May). I'm also one of these extremely rare people who had a severe allergic reaction to the blue dye they used in my Sentinel Node Biopsy. I went into anaphylactic shock on the operating table and they nearly lost me!  Not to scare anyone, because indeed by all reports this is an extremely rare incident. They've decided not to tattoo me after that whole dye incident, so just repeated Sharpie Markers everyday.

No spread to the lymph nodes, so no chemo for me, just radiation and 5 years of Tamoxifen.  The actual radiation today was easy breezy, but I have to admit that this evening I'm feeling some tingling or sharp shooting pains and it does seem warm to the touch (Could I already be having a side effect? Or is this all in my head?). Can't wait until this phase is over. I'm looking forward to a vacation after this too!

Good luck to everyone! 

Hello, everyone.  

I guess I can submit a membership application here.  And in July's group, as well. Maybe August too?   Simulation scheduled for June 22 (originally the 17th, but they asked for more time).  Start the next day.  Finish August 3. 

Left breast. 25 regular.  5 boosts.  Oncotype 19 (88% no distant recurrence-working on being positive.)  No LVI in tumor.  Tumor size 2.5 cm.

Somehow team overlooked a pre-op arm measurement. Last week, left arm 4% larger than right.  Still kind of doughy in upper arm and a little on back.  Still some numbness in triceps area.  Saw LE therapist and will continue with her through rads.  Definitely worried about incidental radiation to axillary area.

I'm worried about the whole thing, frankly.

Was advised to use any cream that didn't have scent.  Very interested in what works best to try to avoid burning.  There is quite a collection of testimonials at the Jean's Cream site....  

Our daughter is in her best friend's wedding on August 7 in Salt Lake City.  We've been looking forward to going for months.  My husband and I were planning to follow the wedding with a road trip.  Don't want to buy tickets we can't use.  Hardly think it's realistic to hope we could make even just the wedding.  There's no way to predict how this will go--breast or arm.   

Off to create the kitchen windowbox.    Distraction, yes, that's the ticket.

God bless us all.

Faithfulc - did you have an MRI done prior to rads? 

I am having a biopsy done on Monday.  I briefly forgot one improtant rule, we need to be our own advocate!  I kept thinking why MRI now before rads, but never questioned it!   It is not apparently standard procedure to have a breast MRI done before rads, because the breast changesduring rads!!  So what the *&*#?!?!  But now that it through something off, for piece of mind, I have to have the biopsy.

Have a great weekend everyone, thankfully mine is packed with dance recitals and other fun activities!

@faithfulc

They do all the marking with their own Sharpie pens, then they cover it with a piece of sticky clear tape.  So far, it hasn't washed off in the shower. I think it is more common that they do a tiny tattoo a short time after they have started the radiation. But in my case they're just continuing with the Sharpie pen markings. And, I will also have the "films" every 5th treatment.  I was in and out today in 15 minutes! 

I'm a day out of the June group, but will be starting rads the 2nd of July for 33 sessions.  Is there room for another to tag along until July?

I just finished 6 months of chemo, 4 FAC followed by 12 weeks of taxol.  My tumor was 5cm, 1 node positive, and extensive lymphovascular invasion, hence the radiation.  The tumor was too large to send for oncotyping.

I'm a bit nervous about the radiation, though I did well with chemo, just so darned tired all the time, but no stomach issues.  I'm loading up on aloe gel, and just came home with Aveno night cream.  Someone mentioned Emu cream, and Bag Balm (?)  Does one wait until rads start to prep the skin or did any of you start before treatment?

Leta, no I'm not having an MRI done before Rads.  Fingers crossed for you - hoping everything's OK for you!!

 I swam throughout my radiation treatments with the full permission of my MD.  I was initially told NO due to the chlorine..and I told him it could be a deal breaker.  I had a great Rad MD who heard how important this was to me after 6 months out of the pool, plus the fact that I was not originally going to have to do radiation....I was experiencing a fair amount of resistance.

 swimming to me is like going to church, and I believe it has been instrumental in helping me with my arm movement.  I kept it simple...12-15 minutes at a time, directly to the showers to rinse off, I used the biafene lotion, and I didn't go every day.  (sometimes due to tiredness, only a few times due to redness)

]My MD was very pleased and said I had helped him change his perspective, so I was tickled.

so, if swimming is akin to breathing for you, I made it through..and I saw the posts of other women who swam throughout before I spoke with my MD...and used it as ammo  

I had no blisters...no severe dryness and visable redness/tightness

but, if my MD has insisted, I would have stayed out of the pool.  I had changed my radiation MD prior to starting as I could sense in his good nature, and that he viewed me as an individual, not "just a paitient..."

Hello,

   I will be joining this group as I will go this Wed. for Simulation/Scan and Tattoo to begin this part of the journey.  I have been reluctant to do radiation since the beginning, put it in the back of my mind until after my last chemo.  I did get a second opinion as I was told by 1st Rad Onc that I was in gray area, gave me all the info /stats etc and said "You really should get 2nd opinion"...was told I should .  

   I have decided that I do not want my armpit area radiated.  I had 26 nodes removed, and really nervous about lymphedema (of course Im worried about recurrance but realize the chances are slim like 3 to 4% in that area (from what I was told by rad onc)....My husband thinks I should rethink my decision. I have two days !!!

   Also concerned as I did my exchange before,  advice from PS .  Anyone else have implant in ?I would like to hear feedback ..Thanks ..

   Hope all goes well for everyone....

Cathy

Finished #13 today, 20 more to go. I feel fine. Went to the beach over the weekend, walked the boardwalk, probably got more sun than I was supposed to but now I at least look healthy. The only redness I have is from the sun where I guess I messed up with the sun block.  Other than that, no other pink or red areas noticed on my breast.  I don't feel any more tired than usual, and had no trouble walking around a lot over the weekend (other than the heat).  Faithfulc, I started out with those 3 little tattoos but when I went back the next time they gave me 5 more. But they aren't really noticeable, or maybe I just don't care anymore. Leta, good luck with your results, hope all goes well.  Anyway, I am 1/3 completed and so far so good. Not even needing to use any creams yet. Keeping my fingers crossed that the next 4 weeks go as smooth.