Winter 2013-2014 Rads

lindacam

Hi.  I had the different pitches too.  The moving in the field is the area being changed to a different size.  I got zapped in 5 different fields so the machine changed 4 times.  No wet towels for me either.

TeamKim

Welcome rlstead!  It is natural to be nervous -- hopefully you can call on us to be in your pockets and provide a place to vent, laugh, rant, or whatever.  We are here for you!

Lana -- turkey breast...  Lol!  Guess we are in the microwave.  I am glad you didn't try to go out in the weather -- good that they closed until this storm passes through.  I am worried about all you gals going through treatment in the frozen areas....  Be careful and take all the precautions (including postponing if you need to in order to be safe).  

batcatlady19

To all those just starting rads, you might read the thread in this same area titled "did anyone make it thru rads with their skin ok?" -- it's 6 pages of women who had no or minimal problems. Pretty awesome, imo

http://community.breastcancer.org/topic_post?forum...

As of today, I'm 2/3rds of the way thru rads, just a little bit pink (funny how the pink area is in a big rectangle, showing exactly where the treatment field is) & my boob is vaguely sore, kind of like when you have PMS or your period. That's about it. No big deal!

rosie9037

Good advice can3047  When I had my follow up after surgery, my surgeon said that she was directing the treatment.  A few days later I saw the RO and the MO; most doctors and nurses gave me their cards so I could get in touch with them.  Not the RO.  So I wrote a letter to the surgeon (she had office hours today), dropped it off on my way to radiation, and before I got home she had contacted the RO (by email, and copied me), sent her a copy of the letter, and wanted to know why I wasn't a candidate for the Canadian fraction.  I see the RO or her nurse on Wednesday.  Should be an interesting meeting.  And now I have a way to contact her--at least by email..  Since I have already started the 15 week protocol, I doubt that they can switch, but I want to be sure that they schedule 4 double sessions.

rosie9037

Lilyluv--your fatigue a couple of weeks after surgery is normal.  Comes from the body healing itself.  It will get better.

The simulation is easy.  They do a CT scan, tattoos (a tiny prick), and make the "cradle":(basically a plaster cast of your head and shoulders with arms above head.  It is used to keep you in position for the rads.  The others are right.  The hardest part was lying there for 20 minutes.

Have a question about lotions.  It sounds like some of you have been using lotions, creams since the start of radiation.  Were you told to do this?  I kind of thought the lotions, etc. were started once side effects began to show up around week 3. (I'm still very early in process.  Had treatment #2 today.  23 more to go). Any info would be appreciated.

CruiserMay

well, today was my 1st of 33. Nothing of any significance to report. I wasn't sure what to expect but it was over before I knew it and then had to meet with the nurse, NP, and RO. I did ask the dr. What is being done to avoid the heart (since it's left side) and he said they have it blocked. Hmmmmm...not convinced.

Everybody stay warm.

SandyS1964

I started my Rads on Dec 31st. Will have 6 weeks of radiation now until second week of Feb. I hope to get alot of information about how to deal with the side effects. I plan to work through out my treatments. I was able to work during my Chemo due to little side effects, hope the same is true for radiation. 

Love to get helpful suggestions from others going through this journey. 

LanaM

Rosie - My center gave me lotion @ my first treatment - it's called Unicare - they told me to use it 3 or 4 times a day - I put it on after treatment (mine is early morning), lunch, dinner & before bed. Lana

ellenkc

Can others please respond with how long ahead of time you knew what your appointment would be for the daily rads? I would really like to know how other centers handle this. 

The place I go to (the only one within 40 miles) refuses to even tentatively schedule appointments until they do the simulation, and they refuse to do the simulation until a week before we can start rads. I am currently scheduled for the simulation on 1/27, starting radiation on 2/3 (I had my last chemo on 12/31). That means I'll have about 3 work days to reschedule the following month depending on what they come up with.

After four months of treatment for myself, and four months before that with my husband in hospice -- and out of work for all of that time-- I totally, totally want to get on with my life. I'm interviewing for jobs and/or may start a new company. But what can I tell prospective employers or clients about my availability?

I had the same fight with this cancer center 7 years ago, when they ended up giving me just one day of notice. It is dismaying that they haven't become more sensitive to patients in the meantime. 

Ellen

candi07

Holeinone you and I are on the same schedule, I had #9 today as well. I don't have any issues so far, doc says they may creep up one me. 

aeryno

I had #1 of 30 today and wondering if any of you exercise after your treatment. My appointments are 3:30pm and right next door to my gym so I was hoping I could swing by after rads rather than get up early, go to work late and leave early. I'm not sure how my skin will feel but imagine it would be okay at least in the beginning. I saw women who exercised during rads so just curious. 

I'm supposed to be running a 5k the Sunday before my last week but figure I may have to just walk to avoid the bouncing and rubbing

Lilyluv

Thanks for the welcome and for the feedback about your experiences with who's running the ship with regard to the various oncs.  I thought the MO said he was coordinating everything and following up after treatment, but I don't know why he would be since I'm only having rads and I can't have Tamoxifen due to blood clots.   Sounds like the system is different at different hospitals. I'll have to start with one and see where it leads to.

Holeinone

Ellenkc, do you mean what time of day? Obviously every place is different, but I would guess, assume that you will be able to tell them what time is best for you. My place told me if I needed to switch times let them know. I took a leave of absence from work, so I told them I could come whenever. Small town, I do not think  they are that busy...Stay positive, sorry that you have had so much to deal with...

TeamKim

Ellen -- You have been through so much, your courage and persistence is inspiring!  I would take the initiative to give THEM a range of time that you can do your appointments, and tell them your time is commitment otherwise.  Since you are job searching, this is crucial for you, so just insist.  Too often, I think we don't want to be a nuisance, so we allow medical practitioners to schedule at their convenience, rather than ours.  But I find when I take the first step to set parameters, they will honor the request, or at least make me feel like I am on the scheduling team by working with me.  I hope you can work out a schedule that works for you.  (((Hugs)))

Aeryno -- I am impressed, you must be so fit.  I taught my interterm class today and was standing for 3.5 hours and I am now pooped out on the sofa.  I need to get moving more often, though I did walk throughout chemo.

Sandy -- I am planning to work throughout rads, and I worked through chemo too.  For both of us, I hope it works out.

Cruiser -- that reply is plausible.  My MO told me they have a way of blocking the heart and lungs with the newer machines.

BatCat -- thanks for the link to positive stories. It is good to realize that many people do not have burns and oozing and all the SEs we read.  No need to worry about something that never will happen, I always say (there is enough to worry about with what IS happening!)

ellenkc

To clarify: the cancer center will not even discuss what time slots might be available (yes, the time of day), much less my preferences, until after the simulation. 

I fought it up through the center manager today, pressing them to do my simulation earlier (my incisions are well healed) so that I would have earlier notice, but they refused. They simply will not discuss specific time slots. Believe me, I am not shy and retiring about this. I hung up on the center manager as he was trying to placate me while not budging on their position at all. They are claiming they have to have the info from the simulation in order to figure out which room I will be treated in and what the exact treatment will be before they can schedule. 

I would love to take back to them examples of centers that have figured out to handle this in a way that puts the patient interest before their machines. 

Ellen

MinusTwo

Ellen:  Sorry to hear about your problems.  I'm in a big city and interviewed two RO's at different centers since I'm not excited about driving to the big Med Center everyday.  The RO at the Med Center said if I would come down there for treatment he would give me my choice of time slots.  Hmmm - not what I've heard from others who have been through it.  You get a slot and as other people before you finish up, you get to move closer to the spot you really want.  Let us know what happens.  We'll be cheering for you from the sidelines.

SallyS70

Hi all,

I had my first of 32 treatments today.  I did not receive my scheduled time or the number of treatments until today which is not a problem since I am retired.  Today's time was just for this appointment.  This first appointment was about 40 minutes long.  I was given one more tattoo.  If I understood the tech correctly, some adjustments were made.  One of the techs said that a doctor was going to check my positioning on the table before any treatment began although I did not see the doctor.  I gathered that my whole treatment was monitored remotely and there are double checks in place ... maybe even triple checks.  When I asked questions or stated my fears, they were treated respectfully.

My surgeon chose my RO.  I knew who I wanted for an MO, and my surgeon was fine with my choice.  I know that the surgeon talked with both my MO and my RO.  The RO said that both he and the surgeon would be dropping out of my treatment when their parts were completed and that the MO would be my ongoing doctor.  I am on anastrozole prescribed by the MO, so that made sense to me.  

When I put on Aquaphor tonight, I must have put it on too thick.  After about an hour, it got runny.  

Rlsteadman

TeamKim- Thanks for the support. I lived in OC before moving to MN. Wish I was going through this there and didn't have to deal with the cold and snow.  

I have been getting lots of good ideas on skin care from reading the discussion groups.

DawnCT

So many great posts!  

Rosie -  the nurse at my RO's office instructed me to use Calendula ointment(not cream)  and that I could also use 100% aloe gel to soothe any burning pain.  

 A lot of people here use aquafor.  I looked up the ingredients online and both the Aquafor and the Calendula have petrolatum(moisturizing petroleum) as a major ingredient in them.   

Had Treatment #14 today - 11 more to go.   Continuing to get a little more red and starting with some tenderness and shooting pains.  It's definitely tolerable but Yes and Ha, Team Kim - I Mentally feel like I'm being microwaved.  I see the RO tommorrow so we'll see what he says about my skin.   

Ellenkc- my center asked me at my simulation what part of the day worked for me and set the appt time.   

In my center,  I will see the Breast surgeon for a year and I think the RO only until Rads are finished and then a 6 mth follow up.   The MO will be there for the long haul with the tamoxifen.   Wish in everyone few side effects ! 

candi07

aeryno, I've been working out almost everyday during rads no issues yet, RO says it's ok as long as my body can tolerate it. I say go for it. I'm actually thinking about doing a half marathon, it will be my first just not sure where to start or how to start getting myself ready. 

Cari3047

Only 5 more treatments after today!

Ellen, My RO didn't know how many treatments I would have until after she did the calculations from my simulation.  I had a cruise planned on Jan 25 and wanted to postpone rads until after.  She got me in for simulation the day after I saw her and started my first treatment two days later so I could finish and heal a bit before trip.  It wasn't until after the simulation that a rad tech called and asked if I preferred mornings or afternoons. I was given a full schedule at my first treatment.  The have been very accommodating with schedule changes and I have had to make several for various reasons. Other than schedule changes though,  It's been my experience that talking to the RO about any and all concerns or issues is the only way to get results.  

aeryno, I am 2/3 finished with treatment and have exercised almost every day.  I do free weights and  and up to an hour of cardio almost every day.  I feel better the days I do than not.  I do try and sched my treatment in the afternoon and exercise before because I get tired earlier in the evening than usual.

Thanks to everyone who addressed my concerns for being in the sun later this month for my trip.  I took my daughter and her friends to Disney World for her birthday on Sunday and was very uncomfortable in the heat.  I was wearing a very light cotton sports bra and cotton tshirt, but ended up taking the bra off and just going natural and felt better.  Thank god 'the girls' are small and I'll never see any of those people again!  lol

Batcatlady thanks for link to skin thread! Great advice on there to wash new clothing before you wear it because of chemicals in the fabric that can cause an allergic reaction on our zapped skin!  Wondering if that could be the cause of the rash I have had off and on since starting rads.....

Cari3047

rosie 9037, let us know how appointment with RO goes on Wed.  Great idea involving other doctor to get RO's attention.  Sometimes we have to work hard to advocate for our own health!

mouse9587

I start my rads tomorrow! Ready to get started so I can get finished! 28 whole breast & 7 boosters.

aeryno

ellenkc - I only received the time for my simulation and first radiation appointment when I met with the RO.  Yesterday was my first radiation and they asked what I preferred timewise and scheduled every single one of my 30 treatments at the same time.  

TeamKim - I walked a few days a week during chemo but over 2 months PFC and 1.5 months post surgery so I'm feeling much better and want to get in shape!

candi07 - thanks for the encouragement! I have a Nike running app that can coach you (i.e schedule runs, etc.) to get you in shape for whatever you aim to run. Good luck!!

Cari3047 - thanks for the encouragement as well.  I think I'll sleep in (rather than get up at 5:30am for the gym) and then hit the gym after rads and go home & sleep.  Going to try that today

checkers

I'm so glad to find this group! 

 I had a stage 1 tumor and 2 negative sentinal lymph nodes removed on Aug 23rd. Thought I would escape chemo but my Oncotype DX was 34. I finshed chemo on Dec 5th and had my radiation specs set up on Dec 31st. Radiation is on the left breast and I was scheduled to start on Jan 13th.  However, my RO called yesterday and said the prone position (stomach) may not work because of how my breast falls away from my heart. She now wants to set me up on my back to see if that might work better. Everything I've read says the prone position is best so, now I'm very concerned about the effect this will have on my heart! I'm almost more scared about this than being diagnosed with cancer! Thoughts anyone?

Thanks!!

Holeinone

Checkers, I think the majority of us are having our treatments lying on our backs. Hopefully the prone ladies will post. It would be interesting to see the # s...I guess I have not really researched the variables in radiation. I am hoping, assuming my RO is doing what is best...

Anonymous

checkers, I have my simulation on Friday, and my RO said I would be having treatment lying on my back. Mine is also on the left side.

ellenkc

My RO said he disagrees with the new trend for prone positioning. He said that no matter how good the table, he doesn't feel he can get the edges of the breast. 

I was vastly relieved. Between my claustrophobia and the discomfort of lying on my stomach (big busted, previous surgery), I was ready to object and/or refuse prone positioning. 

And I had 6 weeks of radiation to my left breast in 2006. No heart problems at all in the last 8 years. 

Ellen

rosecal954

Today I've completed 18/30 treatments.  My skin is holding up very well. Saw my RO today and she said it looked very good.  There is a slightly reddened area around the breast where I'm zapped and a little under my arm. It does not itch or burn. So thankful for that . . . so far.  I am though experiencing other "strange" side-effects.  My RO and MO referred me to my primary since both of them said none of them are related to the rads treatments.  I've had burning sensations on my face, arms and legs, sensitive to warm water and sun. That has mostly resolved on it's own.  The last few days I've experienced numbness, tingling, cold hands and feet.  Saw my primary today and he ordered some blood tests to rule out a few things. The coldness comes and goes and seems to be not as bad today. He said these particular symptoms could be related to the rads as my body is reacting to inflammation, cell and tissue damage circulating in the body and that our body systems are inter-connected. He said the symptoms should resolve after treatments stops.  He also said we all react different to radiation.  This was very reassuring as I was getting quite concerned about these side-effects as I did could not find them anywhere mentioned on the general list.  My fatigue is moderate, not too bad.  I have worked through-out all my treatments, leaving work during my lunch-time and returning back.  Only 12 move to go and the last 5 are boosts. There is light at the end of the tunnel.

checkers

Ellenkc, I too had a few issues with scheduling.  I had specific dates that I wanted treatment finished so I could go on vacation. My RO said it would be possible but the tech argued with me saying it wasn't protocol to start treatment on the date I requested. I also had a specific time slot request because of my work schedule. The same tech said I  couldn't have that time slot because they would have to bump others. Fortunately, my RO and the person who does the scheduling interceded.  I now start on the day and time I want and no one was bumped to accommodate me. Hopefully I don't have that tech for my RT!  

I hope you can get your schedule set the way you want!