Winter 2013-2014 Rads

Hydavis42

hello ladies I finished my chemo December 19 2014 met with my RO December 16 and will be meeting with him again this Monday to start the. Simulation process I am really dreading this almost as much as I dreaded chemo. Please give me some idea what to expect or how to prepare for this .

MinusTwo

Rosie - I'm sorry to say that nothing during this cancer journey has conformed to my time line.  First I didn't expect a recurrence barely 2 years after BMX.  Then I expected chemo & surgery & rads - to be through well before the holidays.  I sure didn't expect more chemo after surgery.  I sure didn't expect the SEs from the 2nd chemo. I sure didn't expect rads to be delayed until February sometime!! But I've pretty much given up trying to manage the days & decided it's my main job to do whatever it takes to get through this and arrive at NED.  Am I pissed that last year I missed my trip to NYC w/my BFF to see 3 plays; and my cruise to Alaska w/my son?  Sure - but I don't see that we have too many choices when the treatment takes longer or makes an unexpected turn except to refuse further treatment.  Hope this doesn't sound too whiney.   I'm sorry the complications have gotten to you and hope everything works out for the best.

candi07

Hydavis42, I go Mon thru Fri, I check in at the front desk then change into a gown, the techs come get you and get you positioned on the board. They make sure the markings on your back are aligned with the machine, this takes some adjusting you on the boards. Once everything is lined up the techs step out of the room then you get zapped, it only takes about 5 mins total time there is 15 mins. I see the doc once a week after treatment on Mondays so she can examine me and answer any questions or concerns. Before I see the doc the nurse takes my vitals total time for this appointment is 30 mins. I also get weighed and x-rayed once a week. Sometimes the techs rotate to different offices so you may see new faces frequently. 

Hydavis42

ok so do you think they will do the chest ct and the tattoo markings on the same day Monday? Sorry bout allthe questions but I feel better hearing it from someone who has been through it.

Holeinone

Hydavis, I would think so, I had the CT scan, & tattoos, that is what the simulation is. Ask all the ? You want. That is why we all come here, to share, & compare. I have whined plenty about the chemo on this thread. The rads are easy, my incision under the armpit is sore, I think more from the stretching than from the radiation itself. The tattoos are not bad either. A little poke. Also my first time getting zapped, the techs drew on me with marker where to lotion up. I was surprised how big the area was, but glad they drew on me so I would be more diligent with the lotion... 

DawnCT

Hydavis- Yes,  I think they will do both on the same day.   That's how they did mine.   The tattoos were a TINY prick.   The hardest part was lying still for about 20 mins.   Try not to worry.  I was really stressed out about the whole process but I am on #14 and Its ok.   

Dawn

TeamKim

Hydavis & Rosie -Welcome to the winter Radiants!  Never apologize for questions, concerns or fears --  this thread is for all of us to ask our questions and to share our experiences so that all can gather the info we need and get support from others.  I am glad you found your way to this thread, and I am sure those who have started will chime in to ease your fears.  Hydavis, my BS told me that chemo is the worst part, and rads is easier -- hoping for both of us that is true; like you, I am really hoping to be on the upswing here!

 I have my appt with the RO on Friday, which I assume will include the tats and simulation, then they expect to start treatments about a week later.  I have been keeping a list of questions I want to ask the RO.  I also plan to talk by phone with my BS before that appointment to make sure I understand what she is recommending with regard to rads (I decided to go to a different RO than the one she referred because I can get the treatments 5 min. from home).  I have started moisturizing the heck out of my girl, trying to get her ready for the onslaught.  I have Aquaphor, 100% Aloe liquid, soft cotton camis and tank tops to wear -- anything else I should buy in advance?  What am I forgetting?  

hobbesla4

Team Kim,

Sounds like you are well prepared.  The only thing that I would recommend that you purchase if you don't have it already is some Neosporin ointment.  I finished rads on Friday and my RO has been having me use the Neosporin in some areas where my skin has broken down.  For the other areas, she recommended Baby Aquaphor ointment and Regenecare HA (which is a lotion that has aloe and lidocaine in it and helps which itching.  She recommended that for me because the regular aloe had stopped being effective, as my skin was itchy and has been a purple red color for a good while, since about week 3.)  After about 3 weeks of radiation, my skin started changing color and having issues, including breakdowns, but I was able to tolerate radiation until the last treatment.

My RO also recommended not using a washcloth to the area when you shower and using a gentle body wash such as Dove or Aveeno.

Best of luck with rads.  It is really a pretty simple process.

Cari3047

rosie9037,  I have learned to not discuss anything with rad techs.  While nice enough, they are just there to admin treatment.  Call your RO and ask why the treatment is different from what you discussed, I might be as simple as her forgetting what was discussed or bad communication somewhere else.

I also had a deadline.  Wanted to be finished to go on a cruise Jan 25.  My RO gave me the choice of US or Canadian protocol to finish in time.  Canadian is shorter time period and studies show it's just as effectvei with early stage BC. She mentioned doing two treatments in one day as an option if I missed a day, and said that if I did there would need to be 6 hours in between.  I haven't had to do it though.  

I'm receiving 18 treatments and have 7 left to go finishing Jan 14.  Total 4788 c

Good luck!

kwing514

I have to share my recent experiences with rads. I had my last of 16 total treatments on Christmas Eve. I found the last week of treatments to be the worst as far as zapping my energy, so you may take advantage of those people, who in the beginning offered their help. This is when I needed it the most, but of course due to the timing everyone was busy with the Holidays. So I had to manage it alone.

I also had very little redness until the last week with the final 2 days bringing on irritation as well. I am now coming up on 2 weeks since treatments ended and I have to say this has been the toughest part since first Dx, both physically and psychologically. I have been drained from the uncomfortable nature of the irritation/itching and the redness has spread and gotten deeper red to the whole breast area and in the armpits the skin has peeled to rawness, due to the rubbing of the skin. Unless I am able to prop my arm up and out to the side it's going to rub.....Do you know how many times your arm rubs against your body??? constantly...I have also had pain/tenderness in the area of the nipple with every little touch and breeze. At this point that has lessened a bit, so thankfully that points to healing.

I use the pure Aloe gel and Aquaphor constantly, as advised by the professionals.

The Rad Onc staff says this is expected and as long as the area is not oooozing, time will heal. I just NEVER thought it would be this bad for this long. I get chill bumps every time I look at it.

As for the psychological aspect, since I got through Dx, biospy, genetic testing, surgery,  and most of Rads with very little problems, I had it in my mind I would be OK as soon as treatments were finished, and could get on with my life. So when I started having these problems I was very disappointed.

Thanks for listening. I just wanted to let others know there may be more healing time if your body reacts the way mine did to the treatments. I wish I had known so that I would be prepared for a longer recovery time. 

kwing514

I have to share my recent experiences with rads. I had my last of 16 total treatments on Christmas Eve. I found the last week of treatments to be the worst as far as zapping my energy, so you may take advantage of those people, who in the beginning offered their help. This is when I needed it the most, but of course due to the timing everyone was busy with the Holidays. So I had to manage it alone.

I also had very little redness until the last week with the final 2 days bringing on irritation as well. I am now coming up on 2 weeks since treatments ended and I have to say this has been the toughest part since first Dx, both physically and psychologically. I have been drained from the uncomfortable nature of the irritation/itching and the redness has spread and gotten deeper red to the whole breast area and in the armpits the skin has peeled to rawness, due to the rubbing of the skin. Unless I am able to prop my arm up and out to the side it's going to rub.....Do you know how many times your arm rubs against your body??? constantly...I have also had pain/tenderness in the area of the nipple with every little touch and breeze. At this point that has lessened a bit, so thankfully that points to healing.

I use the pure Aloe gel and Aquaphor constantly, as advised by the professionals.

The Rad Onc staff says this is expected and as long as the area is not oooozing, time will heal. I just NEVER thought it would be this bad for this long. I get chill bumps every time I look at it.

As for the psychological aspect, since I got through Dx, biospy, genetic testing, surgery,  and most of Rads with very little problems, I had it in my mind I would be OK as soon as treatments were finished, and could get on with my life. So when I started having these problems I was very disappointed.

Thanks for listening. I just wanted to let others know there may be more healing time if your body reacts the way mine did to the treatments. I wish I had known so that I would be prepared for a longer recovery time. 

70charger

Anyone on here been on a sunny vacation since finishing rads?  Was wondering how long after rads do you have to stay out of sun?  From what I am reading on the web , looks like this is a permanent thing, I thought it was temporary.  I really want a sunny vacation away from this snow. Not sure how long to wait, months, weeks??

ellenkc

Staying out of the sun, particularly permanently, is news to me, and I had 6 weeks of radiation in 2006. And I have fish-belly-white Irish-American skin! 

I grew up near the ocean, where we all spent summers on the beach -- long before the ills of too much sun were known. I use an SPF15 facial moisturizer daily, but started that long before my previous cancer. Had a few basal cell spots on my face and arms in my 40's due to my youth on the beach.

Can't say that I've sunbathed since my teen years, but I don't recall any instructions that would have precluded a sunny vacation.

Ellen

msmaples516

I have had my rad treatment at 3pm my reg time & second one at 7am because ohf the holidays

Lilyluv

Hi All,  I'm posting for the first time in Discussions and starting radiation on Jan. 20.  For the life of me I can't figure how to post on these discussion boards.  I comment, then press preview and submit but nothing is showing up.  If anyone can see this and can help me, that would be awesome. Thanks. 

Holeinone

Lilyluv, just hit submit, if it posts, & you are not happy with something, spelling or grammar, then you can hit edit & make a correction...

Welcome to the winter rads, we have 2 graduates & a few, like yourself that have not started yet..

lindacam

It has been a week since rads ended.  Was quite burned but healing really fast.  Normal saline soaks really help, draws the heat out.  Burn ointment essential too if any open areas.

Holeinone

Lindacam, thanks for the update, I figured you had to be kind of toasty, roasty. My biggest issue, is the incision pain from the node removal. RO tells you to do those stretches, but that is going to make even more sore...oh well, I bet you are lovin it not having the 4 hour commute..Take Care..

lindacam

You will laugh.  I had a hockey tournament in the same city as the rads this weekend.  Had to do the drive 3 more times!

70charger

Lindacam  When u say saline soaks do you mean to just soak in salt water or is it something special your RO gave you?

Lilyluv  I see you!

Holeinone

Lindacam, That is crazy, you have worn the tires down.lol..must feel wonderful to be healing & know you are one tough cookie to get through all this. I have several friends comment that they could not "do" this. Well you do what you have to, try to smile and get on with life..

Lilyluv

Thanks Holeinone, Lindacam and ellen!  :-)  I've been scrolling through posts and reading to get up to speed before rads start.  There is so much great information here!  Probably will have more questions as the date gets closer.  I just had a lumpectomy for DCIS grade 3 a couple of weeks ago and still feel tired from that in spite of using the treadmill.  So fatigue is probably my big concern.  My onc didn't explain what the simulation was in great detail.  It sounds like you get a CT scan and then they figure out what dose to give you from the scans and where to line you up?  Also, they said I meet with a nurse for 1/2 hr. before they do the simulation.  Is that what they refer to as your followup nurse?  I've been pretty confused as to who is running the show.  Surgeon, Radiation Onc, Breast Center in hospital, or Medical Onc?  I thought the Medical Onc just was in charge of chemo.  Yep, I'm clueless all right! 

talpha1

I start radiation tomorrow at 7:50am.  I'll be getting 33 total treatments, over 6.5 weeks.  I went through all the tattooing and set up already.  I've not been nervous about it at all.  I had a poor reaction (with regards to side effects) from the chemo, but it did do it's job.  I had a tough recovery from my double mastectomy in late October, and I'm ready to be done with the next step.  I'm starting to wonder if I should be more anxious about radiation.  Right now, it seems like this is going to be the easy part.  I hope I'm right.

Cari3047

Ok, I'm freaked about the sun now.  I'm going on a southern Caribbean cruise 10 days after I finish rads.... 

Please those of you finished, keep me posted on how you're healing and if you think I'll be able to be in outside.  Thanks!

MinusTwo

LilyLuv - It's my understanding that the MO is the driver of the bus - at least where I am. He takes things to the tumor boards & calls the BS & PS to attend.  He determines if you need chemo & what & how much.  He has ordered all the blood work, Echos, PET/CTs, MRIs, etc.  My MO recommended one or two radiation oncologists - and nixed my idea of a couple of others that I asked about.  All these people, including the neurologist & cardiologist that he sent me to, report back to him.  I do see the BS every 6 months, but that's her choice to watch the incision.  Once I start rads I imagine I'll see less of him for that duration - then back to him for final tests.

TeamKim

Welcome Lilyluv & talpha1!  

Lily, don't feel bad about being clueless -- the hard part is that all of us have somewhat different experiences, and some are getting coordinated treatment from a facility where all of their health team is in one place, while others have been referred out to specialists for each part of the BC journey.  Don't be afraid to ask who is coordinating what, and who will be following you going forward once treatment ends.  Keep records of everything (I put mine in a notebook with dividers) so you can easily refer back to anything you need in the fiputure.

Talpha, you have been through so much already!  I hope the rads is easy peasy for you -- you deserve to breeze on through!!

Cari, call your RO office and ask about what kind of sunscreen to use on your cruise, get some light weight and cute airy coverups, and by all means enjoy the sunshine and tranquility!!!  You deserve the vacay!! 

wyo

Sunny vacation follow-up

So- I finished Rads on the 27th of November and headed to Miami on December 10th -21st.  It was sunny gorgeous and in the 80s. I was soo happy to get away from the rain/wind/cold. 

My understanding is that that there is a higher incidence of melanoma after external radiation for breast cancer but------there is possibility of a detection bias meaning they are looking harder and find it more. Either way it pays to research.

So I did not sunbathe- I like to be at the beach in my bathing suit but I didn't do that this time.  I don't think I will sunbathe any more I don't want the risk. I do want to be outside daily. 

 I did walk the boardwalk and do outdoor things every day. If I got too hot I was sweaty and uncomfortable and went inside- I also took a yoga class and it was too heated in the non air-conditioned space, listen to your body it will guide you.

Sunscreen is something I need to research more-I slathered on a high spf product every day and used my moisturizer for face that has spf 30 but I know that sunscreens have a lot of chemicals of concern so I need to select one that is safer. Check out the environmental working group website they rate everything. 

Treatment team-

For me the Surgeon started the process, never met MO til post-op follow up appt.  Then once MO referred to RO, he managed everything during RADs and MO did not schedule to see me me til 2 weeks post-rads.  I will see her every 6 months.  One f/u appt with the RO in late January and done with the breast surgeon. 

rlstead

Hi! Going to start radiation January 9th. I did my simulation appointment January 2nd.  I had a Ct scan and 5 tattoos done at that time. Then January 8th will do a Ct scan to verify treatment positions. I will be doing 25 treatments followed by a boost. I am very nervous because I have skin reactions when in the sun. I get a red rash that is itchy. The RO wasn't sure if it would affect how my skin reacts with radiation. I live in MN and also worry about driving in the winter.  I am glad to have this group to ask questions and get encouragement.

LanaM

Hope everyone is staying warm! My radiation center called me yesterday & said they were closing today because of cold weather - wind chills -30-50 today! They said they're thinking of opening Saturday to make up the treatment day. I wonder about tomorrow now. I've had 13 so far. Last night I was having these shooting type pains on the side of the chest being radiated - anyone else have these? Nerve endings? Asked RO last week about different "pitches" of the different rads - I getting two on each side and one is higher pitched and one lower. Then in between I hear a noise and see something move in the machine. RO again compared it to cooking a turkey - it's basically different temperatures (strength) or different areas that get "done" faster than other areas - like breast of turkey cooking quicker than legs, etc! And the noise of the machine is the "shield" blocking rads from some areas. He said the people putting the rad treatment together get much more complex about it than they used too - said its almost like video games to them! they also put a warm wet towel over my rad area during treatments - guess to keep the rads more towards the skin. RO said somewhere around #17 rad he'll have them stop doing the towel - anyone else having this?

Holeinone

Lana, great post....I got a chuckle out of the turkey breast analogy...I had zap # 9 today. No wet towel. My radiated area is getting a little tender, especially the scar from the nodes, they are hitting that area hard as I had  6 or 7 with cancer & growing on the outside, nasty buggers...