Fall 2012 Rads girls......come on in!

Sissydi

The summer thread has gotten pretty long, so I thought I'd start another for us girlies starting rads in September! Finally had my mapping session done; got my tats (ow!) and I'm ready to start this sept. 6 th. My risk for lymphedema will go up with the radiation treatment, so I'll get a sleeve fitted before hand. Anyway, please join in!

Ellendou

I'm starting in Sept also, the 17th, just have to have my confirmation phone call.  I am moving into the city (4 hours away) and will stay til I'm finished.....need 25 treatments.  Had my mapping and tatts last week.

ladyfighter

Hi sissydi! I have appt with new radiologist this Thursday! Should I ask him about lymphedema risks? Is it for all who had lumpectomy and nodes removed? Hopefully will start treatments soon! Im going to New York Friday! Im stoked!



What is mapping means?

Sissydi

Mapping is when they " map out" where on your body your having radiation; then they tattoo, or mark on your chest and sides where to line you up , so everytime you go, they hit you in the exact same spot!

Sissydi

I would still ask about lymphadema lady fighter, even though you only had 3 nodes out; I'm higher risk because I had 21.

ladyfighter

Thanks sissydi for info!!

nettsarie

I had my CT simulation and tattoos done last week and start radiation treatments today. Very anxious about future side effects.

xtina

Hi goils!  (Sorry, that's just how I "say" it!)

I've lurked on these boards for a while but haven't posted yet.  I guess for the last few weeks I've been in a state of limbo and that's why.  I have DCIS, less than 5 mm.  I had a lumpectomy with SNB (at the same time as a reduction on both breasts)  on August 6, they got great margins but there were some calcifications around the edges of the tissue sample (like over a jump) and they wanted to make sure that I had no "suspicious" residual calcs left anywhere before starting rads; as my BS says "You can only radiate a breast once".  I have a few areas of benign calcs, they just wanted to be sure that those other stinkers were out of there before the rads.

Had the mammo today - the radiologist could not find anything of concern; said he saw nothing that required further evaluation and that I should be fine to proceed with the rads. I have been so anxious over the last two weeks, I just had myself convinced that there was still going to be something left in there and that I'd have to go through another surgery, and that my adorable little noobs would be compromised. (I know, selfish and shallow, but I can' t help have the thought!  More important that I be alive, I know!)

My planning/simulation is set for Monday the 10th, but because of this whole brain limbo I couldn't let myself get to thinking about it.  It's like I could not move on, but after the huge load off from the follow up mammo now I'm like - let's get on with it!  My radiation oncologist wants to start the rads the week after on the 17th.

 Sorry so long!  Guess I'm just looking for a few good rad buddies to commiserate with, share tips, etc.

Ellendou

xtina - I'm starting the same week as you.  Got my confirmation phone call today --- Start on the 19th, have to go to an Education Session at 10:00 a.m. and then will have my first treatment at 2:30.

 Glad that things are all set up but hate the thought of having to move into the city (4 hours away), will be there til the 24th of October.  Thank goodness my children are all grown and moved away.

 I was able to get a room at the Compassion House so will be staying with other BC women.

Good luck, 

Sissydi

Xtina, your in the right place! Welcome everyone........it will be nice to share experiences with each other as we go through this. Tomorrow is my first radiation session; I was tattooed last week. I'll let you guys know what happens!

Sissydi

Ellendou, you should be able to trade a lot of stories then!

rn4babies

I started the first of 28 treatments today.  This is my second time to have radiation so I pretty much know what to expect. The last time I had 30 treatments (25 with 5 boosts) but they told me they have included the boosts with my 28 this time. This concerns me a bit because I burned pretty bad last time and they had to stop it for a week. I'm really hoping that doesn't happen this time. Has anyone else been told their boosts are included in their full breast treatments?

ladyfighter

New faces!! We all can do this together!!



Rn4babies, What exactly is boosts ?? so you did radiation before and again this time? Does the radiation caused you to have cancer in other breast? That is my concern, Im bringing this up at my appt tomorrow. Thanks !



I'm meeting my radiologist tomorrow at 830am for the first time! Nervous and happy at same time, so I can get the journey going! I hate to stop. Just wanted to finish the journey and live my life normal with no doctors, meds, etc! I got a year of herceptin. I just started my first one last Thursday, long way to go!



Sissydi, good luck tomorrow!!!



Hugs to all

trk1018

Hi girls!  I've been looking around and reading these boards for a while too and this is my first post.  I'll be starting radiation September 17.  I finished 12 weekly Taxol treatments on August 23rd.  I also developed lymphedema that same week.  boo. 

 I hope you all are having a great week and look forward to keeping up wiht you all. I'd type more - but they "bandaged" my arm for lympedema today...and well, they might as well have encased it in cement...even my fingers are wrapped individually. I'm a web programmer - this is gonna be tough!   

 

rn4babies

ladyfighter......the boosts are when the radiation is concentrated on the area of the incision where the tumor was. For example in my case, the first 25 were whole breast radiation then the 5 boosts were concentrated in the tumor area. This time they are doing whole breast and boosts at the same time.  Radiation DOES NOT cause you to have cancer in the other breast. I CHOSE to have radiation again instead of a MX.  The cancer in my opposite breast was diagnosed only 2 months after finishing radiation. 2 oncologists told me they feel that it was there the whole time and went undetected when I was diagnosed the first time.  All in all, I feel that radiation was much easier than chemo except for having to rush out of work every day to get there. I worked all through rads last year. The burn was bad but I understand that doesn't happen very often. I was meticulous about my skin care but the RO said some women are more sensitive to it (I tan very easily).  This discussion board has been the most informative and awesome source of support for me. Perhaps I can answer any questions about rads since I've been down that path once already. Good luck to all the ladies out there going through this part of our journey together!

Sissydi

Thank you rn4babies! Your post was informative!



Tk, are you seeing a physical therapist that specializes in lymphedema? I'm seeing mine for prevention, I ordered a compression sleeve for heavy activity.

tina_jason

Well, looks like I'll be joining you ladies.  In a nutshell I was to start rads in July (already had my consult, mapping and stickers instead of tattoos with marker X's under them!) and my surgical site decided to open back up.  I have been healing since then, packing my wound then being placed on a wound vac.  Today my surgeon said it looks good and will be closed completely in one week.  He said I could call my RO to get things moving again.  I am going to push to start rads on September 17 so here I am in the Fall rads group now instead of the Summer rads or August rads groups that I had joined in hopes that I would be with them.  The irony is that if I had started in July I would be finished this week.  Oh well, everything happens for a reason so here I am!

xtina

Ellendou - best wishes are with you!  I'm sure it will be difficult to be 4 hours away from home during your treatments.  Hopefully you will find some good support and great ladies to share with at the house you'll be staying at. 

The hospital/bc health clinic that I go to for most things is about an hour away, but fortunately they are a system with several outside locations and they have a rads center about 15 min away from my house, so I should be able to keep working full time with some schedule adjustments.  I know that I am lucky there, so many people have to travel an hour each day or whatever for treatment. 

Sissydi - let us know how your first appt goes!

Tina - Ugh, sorry about your wound opening back up!  What a whoo-haw for you.  You seem to have a good attitude about it all though, and sometimes attitude is everything.

 Hang in there Trk! 

Boosts - I'm not having the boosts, it's apparently out of the mix when you have a reduction at the same time because the original spot is now in some other area - so I'm just having 5 weeks of total breast rads.  I am also scheduled to start Tamoxifan  at some point - have that appt next week.   

xtina

Amen Ladyfighter!  That's just how I feel right now.  Move on with it!  Good lord it will be awesome to start the new year fresh; not to have to use all of my vacation days up for one treatment or another, like actually maybe take a day off to just take a day off! LOL! 

I know that there are many of us out there with prognoses far wore than mine, so don't get me wrong I'm still grateful!

Sissydi

Hi everybody......rad number one down! This one was a little longer than the rest will be; about 1 hour. They were taking X-rays and such, and then started the treatment itself. The only thing that was a bummer was keeping my arms above my head for so long! But other than that, it was painless and quick! A bit weird, but quick!

Jeannie57

I just had my first radiation treatment today.  What a weird experience.  Rubber bands on feet, arms overhead, pen drawings all over, tattos, bolus (brass "chain mail" material) on chest. The radiation itself took a very short time.  Now slathering Aloe or Miaderm all over, and not just the chest.  Around the neck and behind my underarm, too.  Only 29 more treatments to go.  Kill those cancer cells!  My biggest fear is that I'll forget to go!  I can't wrap my mind around the fact that I have to go e-v-e-r-y day.

birdgirl

Hey all, I start my first of 30 rad sessions today. Having been through chemo and a BMX with expanders over this past year, I am actually excited to be at this stage. Looking down the tunnel of my cancer treatment felt sooo long. To know that in 6 weeks this part of my journey will be over actually seems bearable. Not looking forward to side effects, but I have learned to cross each bridge as I come to it. I guess I will worry about the side effects when I experience them.

Aruba

Hi Ladies,

I met with RO first time yesterday and am going to be in clinical trial. In Canada they have found that doing 3 weeks of slightly stronger rads with boosts combined has overall same SE and outcome as traditional 6 weeks rads of lower dose.  This clnical trail is in stage 3..so much larger pool now of over 2000 women doing this.  I will find out tomorrow if I am in the half doing 3 weeks or the half doing traditional 6 weeks.  My RO is head of dept in top 20 cancer hospital and I have full trust in her.  I had higher intermediate onco score of 26 and had choice on chemo and chose not to have it now as it only brought a 4% reduction in chance of recurrence.  I had clear SNB and no LVI.  So had CT scan yest and got markings in marker on sides of hips and in middle of chest (no clue for what) as the tatoos and mapping will happen probably next week after computer spits out which arm of study I am on.  I hope that this somehow helps others.  My RO feels that future may very well have standard of Rads be the 3 week regiment.  Glad to have you to go through this with..tell me about creams you are using or going to use as I have not gotten there yet, but am told I will be given a slew of choices.  Thanks.  (Shout out to Tina_Jason..good to see you here too)

christina0001

Wow aruba, 3 weeks sounds great.

May I join you ladies? I have now seen two ROs and both agree that I do need radiation, so rads it is. I am still healing from my UMX but I see my surgeon on the 14th of this month, and if things look good he will clear me for rads. I anticipate starting in early October. Well, I could probably start sooner but I am going on a camping trip the first weekend of October and I am thinking I might want to wait to start rads after that. But maybe that is a dumb reason to put it off. I don't know.

My biggest concerns are pain, skin discoloration, and fatigue.

Tazzy

Hi Ladies, would like to jump into the Fall rad pool with all.  Thanks Aruba for directing me here.  Hi to the other ladies I already know.

Have my 2nd meet with RO on 17th September and mapping session on 18th September.    Have already been moisturizing with Glaxal twice daily on the advice of another sister on this board.   I am not fair skinned either.   So far no fears of having rads.  That could change when I get my dates.   I was told (before surgery) that I will be having 25 rad tx.    I am only 20 minutes from the hospital so will drive.   

Christina... people I know who have done chemo and rads said that after chemo, rads is a walk in the park... hope they are right.

Looking forward (if that's the right way to put it ) to sharing this journey with you all and getting to know you all better. 

Ellendou

Welcome to all - I was told I had to go to an Education Session on Rads before i start - does anybody else have to do this?  Also I have had my mapping session and tatts but for the life of me I can't see anything --- unless they are the tiny tiny red dots.  After they did them I was marked up with felt pen but that all washed off.

Having a hard time hard time getting myself organized to move into the city for the 5 weeks, how to pack for that and what to take....think I am going to take my sewing machine with me and maybe get some quilting done. 

Tazzy

I was given a DVD to watch so I knew what to expect at the planning session... was pretty informative.    Haven't been told about an education session yet, even if there is one here. 

Ellendou... I cant even imagine having to pack up for 5 weeks... unless of course I was going on vacation somewhere.    Good luck.

Aruba

Tazzy, glad you found it! Another step forward. I may have to sing as you did to get answers. I was told again to await a call this morning to see which arm of clincal trial i am in (3 vs 6 weeks rads). No call yet. Where does one buy Glaxal? I have bought trader joe's pure aloe as i have seen that recommended as well. You ladies already in treatment, one step closer!

Aruba

No patience here so just called to get update. I am in traditional arm of clinicall trial so no shortened 3 week stint with stronger dose and concurrent boost for me. Maybe better for se this way .. Who knows. But they still have no start date at suburban location ill get treatment. Sounds like it should be sept 17. But have to hear more next week. I just wanna know a date!

Tazzy

Aruba... got my Glaxal Base at Costco... think WalMart may also do it.   I also have aloe (can you tell I'm taking no chances - ha ha !!).    Shame you are not in the 3 week arm of the trial.. but being in a trial of any description will help down the line for someone eh?

Ellendou

Tazzy Oh how I wish it was a vacation, jusst have to think of it as the final step (hopefully) in this journey.

Just got back from my walk, sure having a hard time getting back into shape, having trouble with shortness of breath.