October 2011 Rads

dawmson

Snoopy73: My RO hasn't even mentioned prone position. Not sure why. I did the ABC test last week (Automated Breathing something or other) and I guess that's what I'll be using to do my rads. Basically you wear a snorkel-type device and take a big breath in and then you hold it for 15 seconds at the peak level of lung inflation and they zap you. That's my layman's description, anyway. Im' sure it's way more scientific than that.

I'm playing the waiting game with my RO. He's out of the office til Thursday so I can't start my treatments til he signs off on my plan. So next week will probably be the start for me. I'm really ready to go - want to get this stuff over with!

Did anyone here start using their creams and gels and lotions before rads started? I bought aloe vera gel over the weekend and started putting it on. Not sure if it's really doing anything but maybe if my skin is really in good shape at the start it will help during the process? Any truth to that?  

Kay_G

5kidsmom, we were getting simulated at the same time!  Glad that's done.  I think the first rad will be easier.  I hope any way.  I think I was on the table for about 45 minutes with my hands over my head.  They fell asleep and had pins and needles.  Tomorrow the first rad.  I am scared too.  They put one of those skin tapes on me to mark the bottom of the field.  So one more tattoo tomorrow as well.  Can't wait to have the first one out of the way.

Dawmson, I didn't do anything with creams or lotions, don't know if it will help or not.  I guess it can't hurt?  I asked the RO today if I should buy anything.  He said no, if/when you need it, they'll give it to me.  So for now, I am not going to be putting any lotions on.  Had MX and reconstrustion 6 and a half weeks ago, so I am especially concerned about the radiation damage. 

What is the prone position?  I am just lying flat on my back with hands above head.  No ABC test or snorkel for me.  I haven't heard of that either.  I will say that the simulation seemed very high tech.  They worked so hard to get me exactly into the position I was in when they gave me the tatttos.  Did everything with the simulation and then was a tiny bit off and pulled me up and redid the whole thing.  Everything was super high tech with numbers stating where the placement should be except for the pulling me around with a sheet.  One tech said to the other roll her a little bit.  They told me not to move, and the tech pulled the sheet I was on to move me.  That seems so archaic compared to everything else on the simulation.  These two lines were coming off the machine, one horizontal, one vertical.  It was a neon green light and the machine moved all around me with the green lights moving with it.  It was like something in Disney World or a sci fi movie.  Will let you know how the first rad goes tomorrow.

1Sam7_12

Anyone else use/plan to use MAMMO-SITE rads? 5-days vs. 6-week

nancygv55

Kay, you are a very good writer!  My experience was very similar with the high tech beams and numbers vs low tech moving my hips around.  My first rad went well although they were behind schedule and needed to adjust my armrests for several minutes to make sure the machine (zapper!) didn't hit my elbow.  I loved that they took extra time to be precise and didn't seem to be rushing at all even though they were behind schedule.  The perfect combination of professional and personal.  The lesson I learned was to have a good attitude every day and to expect the unexpected.  I was late for a meeting at work and that would have made me very tense and upset just a few weeks ago but today, "whatever" and life went on.  Hope it goes will for you tomorrow!

Kay_G

Not me, but 5 days instead of 6 weeks sounds good.

abatellik

5kidsmom: They want to radiate those lymph nodes because I was diagnosed with IBC (although they are unsure if it really is or just IDC) and they want to throw the book at it.

Dawmson: I talked to U of M today about what their "breathing techniques" entail, and it sounds similar. 10 seconds of breath holding at the right time. They said they would have me practice with one of those contraptions they give people with asthma to increase lung capacity. I am still waiting to hear back about the Cyber Knife they use by us. Hoping to qualify for that, but whatever I end up going with, it needs to be soon!

I had my planning but looks like I will have to have a second- not looking forward to the additional CT scan but evidently they don't use each other's planning for liability purposes. Eager to get started to get done before the Christmas season!

Ceeztheday

Hi ladies. #22 of 35 today. A little itchy, but not very bad. I am burping and burping however, and I smell myself. Yuck. My husband and the rad techs say the smell is not bad, but my nose disagrees. I hope all this weird stuff goes away when these treatments are over. Hang in there everyone. Onward and upward.

rhonda2011

Hello Ladies!  I just had my lumpectomy today... (yesterday) ... cant sleep.   Next step is ratiation... if they find no cancer in the sentinel nodes.   A nurse told me today that I may qualify for a shorter round of rads.   Just 5 days in a row ... twice a day and thats it.   Has anyone done this type?   or heard of it?   thanks... i so appreciate all the posts out here.  its amazing.   Prayers to each and every one of you! -  rhonda

pam53

6 out of 34 today.  So far, no skin reaction or fatigue but it is early in the treatment course.

Thanks to all before me to listen to their experiences as they go along.  I will try and do the same for the group starting now.  Once you get used to the treatment it is nothing.  I just lie back, close my eyes and think of something.  On my 30 minute commute to the facility, I plan what I am going to think about.  It helps keep me still and calm.

Snoopy73

Hello ladies, first radiation went smoothly yday. Met with my Nurse Practitioner after, she is super nice:-) and the techs are all very nice and helpful. The "Prone" postion is when you lay on your tummy with the BC breast hanging out:-) more like when you are having breast MRI.

I am doing okay today, feeling tired but not from the Rads, more from the 6 mile BC walk i went to on sunday:-) I working thru treatment, current schedule is 8:30 - 3pm. My rads are late anoons at 4:30 pm. I live in the suburbs and work in the city so my commute is CRAZY!!! drive 20 misn to the train st, park my car, take the train, 20 mins ride to the city, walk 3 blocks to my office!! And to top if off i have 2 toddlers (4.5 & 3) so DH is dropping them in the AM and I am picking up after RADS!! then prepare dinner, baths and bedtime!!! Oh Lord help me get through the next 6 weeks!!! 

Take care ladies 

llm005

Hi everyone

I was in the September group but I finish this month.  Will have had my 11th of 23 today

Kay1963 --  you asked about prone position -- that's what I'm doing.  My first simulation and mark up was done while I was on my back, but when they looked at it, it was not optimal and so I had a second mark-up while in the prone position -- on my tummy and that's how I have had the radiation.  I was worried about heart impacts in particular, so am happy to be doing it prone -- but I expect everyone's situation and body shape and type of cancer and so on is different....

dexxy

now you ladies have me all worried about my positioning, I too had my lumpectomy on the left but there was no mention of different positions or breathing.  Hmmmm, the simulation seemed very specific and there are 2 techs working to get me positioned right, but I don't want to  have heart problems down the road as I plan on living for a long time!

any suggestions? I had my first treatment today

MostlySew

Hi Dexxy

My rad is on the right side, but since no one responded yet I thought id try to ease your mind just a bit. Near as I can tell, all ROs are super cognizant of any damage they might be doing to our underlaying body (heart, lungs etc). And they take great pains to avoid problems. That's why they do the set up with a CT scan, then the simulation to make sure it will all be OK and then I get x-rays twice a week just to make sure it still looks good. Apparently they realized about 8 or more years ago that by radiating directly down onto the breast they were causing heart and lung problems later on. Or so my RO explained to me. Oh, and it also seems to depend upon wether the tumor was on the inside of the breast or the outside (near the armpit).

All that being said, this would be a good discussion for you to have with your Dr on doctor day and perhaps even with your techs tomorrow. Good luck

dexxy

thanks MostlySew-i think you are right, the technology is way more advanced then before and I feel confident they are doing everything they can to protect my other organs.  I'll make I ask some more questions tomorrow and with the dr.  my tumor was at 1 o'clock

nancygv55

Snoopy73, you put me to shame.  Wow, I am so impressed with all you are managing to accomplish and your terrific attitude.  You will be in my prayers. I'm so glad you have a DH who is able to help out.  How are your kids doing with all the craziness?  This is a good place for you to be while you are juggling so many "balls" so I hope you continue to find the time to connect with all of us. 

Ceeztheday

#23 of 35 today. A little itchy, but not too bad. Thanks to everyone in this group for all the information and inspiration. Onward and upward!

skl679

I will be doing brachytherapy next week 10/10-10/14 - 5 days twice a day.  Having the catheter placed tomorrow afternoon - right now slated for Contura device. Just dreading having any kind of surgery again so soon after last Tuesday's lumpectomy. Learned today that my surgeon took huge margins, mine were nearly 1 cm clear with a 1.4 cm tumor! I am an overwhelmed, emotional wreck and scared but sooo looking forward to starting the healing!

poohnutw3

Hello all, I go tomorrow for the planning/simulation not really sure exactly what is going to happen but I know they told me it will be an hour and a half. Still can't believe this is happening. 

llm005

Hi dexxy, Mostly Sew's response was bang on.  When they did the first mark up they didn't think there would be any problem, but they take a fair bit of time to do the planning after the markup and really look closely at things, at which point they decided that I should do it on my stomach.  Again, everyone's situation, body and boob shape, BC type and location are different.  But as MostlySew said, it's a good question to ask your RO.

poohnutw3.  Good luck.  It is not that scary.  They will arrange you on a table and move you around and make marks on you and do some scanning.  They may give you some tatoos -- freckle-sized dots.  They are done with a needle, but it's just a prick like an insect bite - ok, not a mosquito, a slightly bigger insect, but really, it's a momentary thing.  Some people don't get them.  Every place and person is different, that's what I've learned in reading people's posts.

Sarytyr, hang in there.  Can really understand not wanting to have surgery again so soon. On the plus side though, you will be done this so quickly.  Good luck.

MinneJen

Hi- I just finished my chemo on 9/28 and am on to radiation in Oct. Starting 10/10. I had a BMX in late June and have been through 2 rounds of chemo A/C and Taxol. Not looking forward to radiation, but need to be agressive in treatment. This is the first time I've joined a group so looking forward to going through this with you all. Good luck to everyone.

perts1

Went to RO for the simulation yesterday and got started with the measuring & stuff when he got the results of my Oncotype DX.  I'm a high risk so now I'm to have chemo, which I thought I wouldn't have.  I cant believe at this late date everything changed.  Anyone else have this happen?  I'm really not sure what I should do. 

Snoopy73

Dexxy - dont stress my sister:-) mostlysew said it right.

nancygv55- Thanks for your thoughts & prayers, really need them now more than ever:-) To be honest I dont know how i am going to do this for 6 weeks!! I feel so tired today, my body aches all over!! Thank God, DH is off work today so he dropped off wnd will pick up the kids.My kids are okay i guess, they are young so its hard for them coz they want my attention and cling onto me, but i also want attention haahahaha and sometimes want to be left alone:-( i just dont have the energy to play/spend much time with them during the week coz by the time they & I get home its already 6pm then its dinner, bath and bedtime.. So in the past i try and have fun time with them on weekends but this coming weekend i dont know if i will have the energy. A friend offered to take them to a fair and let me rest, i kinda agreed but feel guilty:-( will see how i feel on saturday:-)

Kay_G

Snoopy73, I feel for you with small children.  Don't stress yourself.  Take the help from your DH and friends.  There will be lots more week days and weekends and you will be able to make up for lost time.  Your kids will love going to the fair with your friend, and then they can tell you all about it.  Be good to yourself.   (((((hugs))))))

dexxy

Perts1 - what was your oncotype results? I had a similar DS as you and ended up doing chemo, I'm here for you if you have questions

thanks for all the support ladies, you made me feel better.  Needed it today as a friend past away this weekend.  brain cancer, yep mets.  Scares me, but I do know when she was DS she opted to NOT do chemo.  So for me, it reminds me that doing chemo was the right choice for me.  goota run to RADS

perts1

 My oncotype dx is a 38% recurrence but I'm 63 so I'm not sure what I should do yet.  I just wish my brain would start functioning again so I could think straight!  I'm just a nutcase these days!

dexxy

Perts1- so was you're # 38? mine was 22, so i was super gray.  Have you gone through menopause?  If I was you I'd get a second opinion.  I did, I actually got 3, it definitely helped in my decision making.  Is there a teaching Hositpal near you?  I ended up doing chemo at a university hosipital and felt I had better care, and more information.  Let me know if I can help

786Abby

Hi. Can I join you lovely ladies? I am starting my radiotherapy tomorrow- the first of 15 sessions. My oncologist has told me I am going to burn because I have pale skin and big breast. Has anyone else been told in advance that they will burn? I have got emu oil and aloe vera ready in case.

5kidsMom

perts--so hard when the plan changes, at least that's my experience!  I'm learning to not count on anything, cause so much can change so fast!  If you are uncomfortable with the treatment plan, see if you can get a 2nd opinion!  Also, maybe get all the info you can on your case, research then go back to the 1st doc with more questions. 

Abby---I'm very fair, and was told I will probably burn.  They keep saying 'you never know, everyone is different' but they seem to be expecting it.  They said that they usually start "skincare" the 2nd week but with me, they started the day BEFORE I started rads!  yikes.  They gave me "udderly smooth" cream to use 2x/day, but I'm using it 3x/day.  Can't be too careful! 

Snoopy--I completely understand about the kids.  when I was dx, my youngest was 3 (he's 4 now) and he was very clingy.  Not used to being away from me at all.  He has done well going places with friends, and seems to always have a good time.  We cuddle up in bed and read tons of library books when I'm tired.  I also make my youngest 2 a "tent" of blankets and chairs, and they will sit and play there for a long time   Kids are resiliant!  We do the best we can, and they will be fine.  I'm hoping that my youngest doesn't really remember Mom being sick much at all.

786Abby

Hi 5 kids mum. Lets see if we can prove them wrong. I love the name of the cream

Kay_G

Hi all!  I am very fair too.  RO said it didn't matter, this is a different kind of radiation than causes sunburn and you just can't tell who will burn.  I had first rad yesterday, and I swear I am a little pink already.  I put some aloe and some keri lotion on and will continue with that until they tell me to use something else.  (RO said I wouldn't need anything until at least 2 weeks into it, but could use aloe and/or keri if I wanted.)  Hope the second rad goes more smoothly tonight than the first one went yesterday.