October 2011 Rads

Kay_G

Joan811, mine is on the right side too, so I don't have to worry about the heart.  I was concerned about the lungs though especially since I got pneumonitis during chemo and it can also be a complication from rads.  The RO told me they are always careful to avoid the lungs, but will be especially careful with me.  To tell you the truth, I don't know what to think of this.  (Really I think he was just giving me lip service and is treating the same as other patients, but who knows.)  I mean if I'm going to do rads, I want to have the benefit of them.  I don't want to do it less than it should be and maybe have it not work as effectively.  The percentages of a bad complication to your heart or lungs is small, and they weigh that before recommending rads for you.  I am going with that and the percentages.  I will say I am really impressed how careful the techs are to have everything "lined up" before starting.  This is how they are for everyone I'm sure.  It seems they are as careful as humanly possible and I really am not worried any longer about any complications to my lungs.  I hope once you talk to your RO and start, you will feel the same confidence.

As far as how long appointments take, I will say the little experience that I have (finished 4 txs), they are always running behind,.  I guess it comes with the territory of being very careful to have things lined up.  Also, my txs have been very late in the day, so probably earlier in the day would have less backups.  Most was about 45 minutes behind.  Once I've gotten into the room (other than the first treatment with all the pictures and x-rays), even with all the time lining up, I'd say about 20 minutes max.

I'm not claustrophobic (that I know of any way), but have not had any problems with the amount of time staying still or the room.  I did get pretty apprehensive before my first MRI, but once it started, I was fine with that too.  If you're okay with MRI's, I think the radiation is easier from a claustrophobic aspect and won't be a problem.

Good luck to you! 

tarry

I have simulation on the 18 and rads will start on the 24th. Though I'm at MDAnderson in Houston, I'm going to be on the Canadian protocol, which is 5 days a week for 4 weeks, incl boost. I'm giving some lectures in England the first week of Dec, and I really didn't want to cancel them.



I have bad claustrophobia, and some comments are making me wonder if I am going to have to get dopped up with xanax every time. I have a lot of trouble with MRIs. I am having enough trouble working as things are now!

MostlySew

Hi Tarry,

I really don't think that with the actual radiation treatment you'll have any claustrophobia at all. Nothing is totally surronding you and you can see the ceiling at all times, at least with one eye. my ceiling vision is blocked by the machine in the other eye. You can look all around the room within the confines of not moving your head. I amuse myself by watching the subtle window display which changes throughout the tx. The simulation will give you an idea about possible claustrophobia as they used a radiation machine to do my x-rays for the set up. They did roll me into and out of a cat scan? machine alternating with the x-rays and that could give you a bit of a problem but it's open at both ends and you're only in it for it seems a minute? Hopefully you'll be just fine. Talk with your RO about it and take a look at the room and machine. I think if you've no problems with regular x-rays you'll have no problem with this. Hope this helps, we don't mean to scare you. Good luck

Joan811

Mostlysew, Thanks for the welcome and overview of what is ahead.  I have not met with RO yet - am still with the MO but am turning down her chemo cocktails.  I see you had a similar diagnosis Oncotype score and treatment.  I hope your treatments are going well - it sounds like you have it figured out.
Kay, I guess since I'm going to a busy cancer center, I can expect some wait time.  I hope I get some say in when I go.  About MRI - I had only one - closed - took valium but it wasn't enough.  I know that the rads do not involved enclosure; however, part of being claustrophobic is difficulty in being confined or blocked from normal movement.  I can sit still if I am not lying flat.  I've seen some photos of a contoured table for rads...I can hope.
Tarry, I know how you feel...it is hard to explain what it feels like when the anxiety starts - I'd do Xanax except I don't want to have to have a driver every day.  We can do this...it is for a short time and the least invasive of treatments. 
Thoughts and prayers to all on this thread...Joan

5kidsMom

quick question for others who have had mx w/o reconstruction--or am I the only one here?    The office where I get my rads has instructions to wear no bra/prosthesis till several weeks after treatment is complete.  Yikes.  Not liking my "look" right now at all!  Yesterday I went out, and wore my bra/prosthesis, and my arm has felt swollen ever since.  ugh.  I'd just wear bulky sweaters, but the weather here is in the 80's and supposed to get hotter this week.  What is everyone else doing?

Robyn6463

Hi 5kidsMom,

I just had a lumpectomy, no reconstruction...and I was also told no bras until after radiation. The tightness, rubbing can damage the skin. I've purchased a bunch of spandex type camisoles and tanks, and was hoping that I could wear those with loose fitting stuff and get away with it. I thought that the fall weather would help that, but it's pretty warm right now, even in Vermont! Of course, I don't start quite yet, I've got my last chemo on Friday, so maybe...

Natters

I was told to avoid all underwire bras, and to try and really wear a bra as little as possible during rads - which is going to be tough since I'm busty and I work full-time! And I can't go to work all floppy. My plan is to get one of the last appointments of the day and then go home and take off my bra and lay around the house in a loose t-shirt and sweaters all evening. Then hopefully my skin will have healed sufficiently to wear a looser bra for work in the morning. I'm actually still hoping I'll be able to get a sports bra on the first few weeks, so I can work out, but that may be wishful thinking.

In any case, the radiology nurse coordinator told me that I can also try wearing an old, soft t-shirt UNDERNEATH my bra to help protect my skin if I was getting too sore but needed to get a bra on for work. She says she recommends that to her patients who insist on wearing underwire bras, too. Maybe you can try that? Put an old soft shirt on underneath your looser bra with prosthesis?

Joan, I am worried about claustrophobia, too, so I am glad you asked that question. I know exactly what you mean about holding still making you feel claustrophobic. It makes me want to scream. I didn't know any better when I got my MRI, but if I ever need another one, I plan to ask for drugs! 

dawmson

Hi ladies, I'm in the countdown to my start date on Wednesday. I'm alternately scared and excited to get going. I've been dreaming up ideas of things to do nearby my treatment center (Swedish Cancer Institute in Seattle). I think I will sometimes ask friends to go with me and take them to lunch before my treatments. There are a lot of restaurants I've been meaning to try. 

My appointments are at 2, which I hope will be a good time. The company I work for is based on the east coast (I work from home), so that way I can be working for most of the East Coast day. Then hopefully I can do more work after I get home.

Joan, mine is on the left side, in the 3pm position, very close to the edge of my breast. I will have to do my rads with an ABC machine - Automated Breathing Control, I believe. It's a snorkel-like device that is connected to a monitor. I take a deep breath in, hold it for 10 seconds and they zap me, then I breathe out. The purpose is to elevate the breast tissue away from my heart. Not crazy about the snorkel (if I happen to swallow when it's in my mouth, my ears clog up) but if it keeps my heart safer I'm all for it! 

I've been pretreating my breast with Miaderm and Aquaphor. No one told me to, I just figured it wouldn't hurt. I tried the Tom's of Maine deodorant but it seemed to give me a rash so I stopped using it. Anyone have any other recommendations?

Anyone else here in Seattle?  

tarry

Mostly sew and Joan, I scare easily these days.  Also, I'm afraid an enclosed tube set up is just impossible for me, so I'm relieved it won't be that.

 The beginning CT may be hard; I'll try to have a driver for that day.

Natters

Tarry, is that a big tuxedo cat in your pic? I love cats - they are such a comfort and also a wonderful distraction. You are lucky to be getting the Canadian protocol. I asked about acccelerated rads or partial-breast rads but I was told I was too young, which is irritating as hell. 

Dawmson, I have been trying to remember to pre-treat my own chest with Lubriderm and saving the Miaderm until I start rads, but maybe you have the right idea. I haven't stopped shaving my armpit or using the Tom's yet, because I don't even have my planning until the 24th. 

My tumor was in my left breast at 2 o'clock, so I am very curious to see if they try me on my stomach or try using a breathing device like you described! When I asked my RO if there was any potential for damage to my heart or lungs during my consult last month, he just pooh-poohed my fears and didn't mention anything like that to prevent it. So I'm hoping he is just a bad communicator but actually will use all sorts of fancy techniques to protect my internal organs.

5kidsMom

Thanks for the suggestion about a soft shirt under the bra, maybe that will help.  Have to try it.  Seems everything is so complicated these days.  gone are the days of just throwing on clothes and leaving the house!!

 For those worried about claustrophobia. . . . . I get claustrophobic at times but have found this to be very do-able.  I'm not closed in at all, the machine literally swings around me, and even where the machine is, I don't feel enclosed at all. 

 I also have a left sided tumor, and a clinically positive intramammary lymph node (near my sternum).  I was/am very concerned about radiation to my heart.  I was told that of course, they are very careful.  "it's all about angles" is one thing they told me.  I've decided that I don't want too many details on how much radiation my heart/lungs are getting   We all have to weigh the pros and cons of all the treatments we get. . . . . I discussed it at length with my RO and decided that I'd do what I can to prevent getting this cancer back, and trust God to protect the other parts of me.  Don't think there is any "right" answer, and everyone's situation is different. 

Natters: at my first consultation, I felt my RO blew off my fears as well.  I went back and flat out told him I wasn't having the rads till I had my questions answered and could really feel "on board".  Took my dh to that appt too.  Not sure what changed, but at the second consult he did explain things much better, validated my fears, and I felt much more confident in going forward. 

Teresa5

I go for my very first rads today.  I will get two more tattoos today also.  I too am claustrophobic and I thought that I would be fine durning the simulation as the CT scan is not completely enclosed.  Well....I would have been fine except that once the scan was done, the tech did not come right back in to slide the table back out. She had told me that they could see and hear me at all times, so I called out a couple times with no response. I tried to stay calm, but my heart started pounding and the panic set in....and I started to cry... I didn't want to move because I didn't want to have to start the whole procedure over again!  I don't mean to scare any of you that are claustrophobic, but be sure to tell the tech of your fears. I was shown the machine that will actually be delivering the radiation and it is not enclosed in anyway, so no worries there!

dawmson

Does anyone have any advice on staying healthy during rads? My daughter just came home from school and announced that 5 kids in her class have strep throat. Ack! I'm not supposed to take antioxidant supplements, so that rules out Vitamin C ... so what else do you think I should do? I did get a flu shot last week.Also, is anyone going to try keep working out during rads? I'm not a workout fiend but I think I'll go nuts if I don't exercise for 6 weeks.  

Paintingmywaythru

Hi all started rads on October 3rd...I am in prone.....for them...I asked about it as I heard a few centers were trying it and I got a doc who had been on the research team at NYU when they started it. Anyway...all is well but I have burning breast inside. HAve been using aloe 3 tiems a day and they gave me aveeno...yes they say no aluminum...so Tom's of MAine it is....just wish the drive weren't so long and I didn't miss work as I am self-employed, otherwise all is good. Eager to be done... Will have 30 sessions- 5 will be boosts.....

MostlySew

Hi Teresa5

That's just awful to leave you in the machine like that. Of course you panicked. Don't feel bad about it panic hits all of us occasionally. Hopefully your rads went just fine today.



Hi Dawmson, I'm a walker and have been doing it all the way through rads, at least when I could. A few times I pushed myself too hard and ended up getting either extreme fatigue or a bout with this inflamed nerves in my torso thing. So I think exercise is good but be sure to listen to your body very carefully. I find the fatigue will pass quickly if in listen and sit down or rest. Doesn't usually take more than1/2 hour to recoup. At least for me.



Hi 5kidsmom, my friend had a double mastectomy and went to her local Am. Cancer Society and bought a camisole top which has little (or big if you like) pockets sewn inside and then picked out "pillows" to put inside. Looks quite normal. That might work for you.



For big breasted women.....of which I'm one, I've found that if I take a strip of soft t-shirt material and tuck it under my breast, it helps avoid skin chafing, which is important. Also don't forget those bra expanders which really help to make your bras much looser. I actually cut off the end of some old underwire bras I will never be able to wear again and use that.



I've finished 18 today and am getting a bit uncomfortable so ordered calendula cream which the nurse recommended. We'll see. Fatigue seems to come and go. Some days I've got toms of energy others I end up dragging. Very strange.



Hope everyone is doing well, bugs to all.

MostlySew

Oops.....NOT bugs to all! HUGS to all.......I'm still giggling at that typo!

Ceeztheday

I had #27 today. One more full and then 7 boosts to go. Today, for the first time, they gave me a cream...Silvadene cream. The nurse applied it after the treatment and gave me a small jar to take home. Has anyone else used this cream?

Kay_G

Had #5 of 28 today. 

Teresa5, I didn't want to post my experience with my first rad and scare everyone, but it was very similar to yours.  I was in the room for an hour and 45 minutes with my arms over my head.  The techs came in and out several times, but the last time it was really long and my arms started shaking and I was asking what was going on and where was everyone.  Like you, they told me they could hear me and would respond, but no one was.  When someone finally came in, I was very close to tears and told them I could not stay that way much longer.  At that point, they started rushing around and got things finished.  My hand was swollen and my arm wasn't sitting in the mold the same way, so it just seemed to throw off everything a little bit and they were really being very cautious and making sure everything was going to be correct.  But it was just too long to be with my arms above my head.  But like I said, the problem was that my swollen hand was just throwing things off.  Otherwise, it wouldn't have been like that.

The doc gave me one tip today that I will pass on.  He said to make sure that any cream or moisturizer I used had no alcohol in it.  He said that would have a drying effect and make the effects of radiation worse.  I am using Eucerin cream.  He recommended that or Keri.  If (probably more realistically when) my skin gets red or pealing, he will give me something else for it.  I think he might have mentioned silvadene Ceeztheday.

Have a great night everyone!

5kidsMom

Mostlysew---I do have some of those camisoles, with the pillow things. . . . I'll see about dragging them out.  Used them after the surgery! 

Kay--what a scary experience to be so uncomfortable like that!  The techs come in and out all the time during my appointments, but they TALK and joke with me, which really helps.  I asked them today if I could wiggle my fingers at least, because it gets l-o-n-g to have your hands up there so much! 

They were so sweet for me today. . . . . they took longer doing films etc to make sure I was still "lined up" right, then I was still supposed to have a nurse and doctor visit.  My daughter had an appointment scheduled RIGHT after rads, so the doc talked with me quick and told the nurse she'd have to see me tomorrow   Makes a difference when they work with you!

Kay_G

My techs are really nice too.  They talk with me.  But that first time was so long, and they did come in several times and tell me that they were being cautious and making sure everything was "lined up".  But the last time there was a long time from the last time they were in and when they did finally come in, there was a new tech.  I think they had a shift change in there which added to the time.

Joan811

Mostlysew - can't believe you said "bugs" -- after my stay in New York City hotel pre surgery,  I had a bed bug scare at home right after surgery - slept on the sofa 2 weeks and washed and dried every linen and piece of clothing...called the exterminator and it was only carpet beetles.  Still gross but at least they don't bite people.. HUGS over BUGS!!

I am kind of horrified by what I've read today but VERY glad you have posted the experiences.  I could not do the snorkel.  I can hold my breath, thanks.  My tumor was at "11" oclock and 8mm back, so kind of central. 
What goes on during this first appointment?  Are you in a contour seat in an awkward position?  Is there any enclosure?  Do some get CT scan before rads? 

Today I called my oncologist who left chemo up to me.  Her NP returned my call -- I told her I would skip chemo...she asked me where i was going to do rads.  I expected to do it at the same med center since they boast about the "team" approach.  Since no chemo, I was told they would mail my presription for hormone therapy and see me in 3 months.  Guess I was dropped by MO.  It was a strange feeling, because right now I do not feel I have a doctor or anyone to discuss things with.
So, do I go to my medical center for rads, or choose a closer location for convenience, or do I interview a lot of people to find out who will not abandon me in the machines????
My anxiety is building; I am going to hire a chauffeur and drug myself silly.  (wish I could afford it)

Please tell me about this "first" appointment???  Anybody have a quick one?

I was told no underwires right after  bulumpectomy, but t have been wearing them since swelling went down.    Someone suggested silk scarves between clothing and breast which I did try and it worked.  Cotton sounds better for warm weather. 
HUGS, Joan

Paintingmywaythru

I interviwed 3 centers and picked MGH because they would do rads in prone for right breast and will just do 30 rads not 33. I felt the offered more services and top notch professionalism.

Joan881 I left my oncologist and rad onc At Mt. Auburn...not helpful in the way I needed.

I was never left in machine but last picture was 10 ,

minutes and during it they told me 5 more minutes, you're doing great/ we'll be in shortly and they swarmed in as soon as it was done. One tech stayed with the monitors. After xray on day 5 they adjusted me a tad. See my new mec onc today. Have loads of questons for her...she gave me a second opinion.

Center isn't the closest but I appreciate the professionalism...in and out of the room in less than 10 minutes...getting just 20 seconds of rads each time, but I feel my breast burns inside.

Anyone have that.

So sorry for you ladies ho have to wait- yell out- don't be polite. You are paying their salary!

Kay_G

Susan, I have no felt my breast burn inside, but the rads nurse mentioned to me that some patients feel fleeting pangs  that go through their breast, she said it's almost electrical and it only lasts a few seconds and not to be concerned if I felt that.  I believe she was talking about being at home, after rads, but I would think they could also come during the radiation.  See what your doc or nurse says.

Teresa5

One treatment down...32 to go...  The first treatment went just fine. Took about an hour total, as they had to do a little more aligning and I rec'd three more tattoos.  My arms and hands did go numb again, and like Kay1963 said, I could no longer feel the bars that I was trying to hold onto. Every Tuesday I will meet with the Dr, and once a week they will check the alignment. I did get a schedule and was pleased that everyday is at 4:00 with the exception of two. Still feeling some fatigue and neuropathy from chemo.  Glad to hear that the fatigue from rads has not been too bad.

Joan811 - I am sorry if I scared you at all, I didn't mean to, but I wanted to share my experience. I think if I had voiced my fears (claustrophobia) that I may not have been left alone for quite so long. The machine that delivers the rads is in no way enclosed, and the actual treatments will be very quick.

dawmson

This has nothing to do with rads, but I had to share this story with you.

This past weekend I noticed a black spot on my gum in between two of my front teeth. I flossed, brushed and poked at it, but it didn't go away. By Sunday evening it was looking bigger and deeper and I started to panic. My thoughts went in that direction that I'm sure yours do too these days: Cancer. I did a lot of googling and worrying most of that evening.

Then I decided to poke at it one more time, this time with a toothpick.

And guess what? It was a seed stuck in my gum tissue -- and it popped right out.

I'm laughing now, but MAN, that was an emotional rollercoaster. I realized that that's how the rest of our lives will be, but at the same time, it's a reminder that there will be a lot of worries over what will basically be just a seed. 

marthah

Welcome to all the new folks who have joined in the past week!

My apologies for being off line -- DH and I left town for a long overdue vacay last week, and I've been spending the last 3 days trying to get caught up!

Had #1 of 25-ish rads this morning. Was not a big deal at all. Once they got me situated on the table, the actual treatment was about 3 minutes. Will see my RO once a week on Tuesdays. 

Some of you asked about SN treatment if your nodes were negative. My SNB was negative, and they are not treating any nodes; just the breast. 

Point of differing information -- in one of my early meetings with the RO nurse, she mentioned that it seems the skin remains less irritated if it can be kept dry, so she suggested using regular corn starch (like treating heat rash). Too early for me to have any irritation, but if it comes up, I'll keep you posted on the approaches. 

Keep on keepin' on! -- Martha

MostlySew

Hi Marthah,

How lovely to have a vacation before starting all this! I wish I'd done the same.



I echo your cornstarch tip. I actually used it from the beginning even before any irritation not so much for dampness but to keep the skin from rubbing against skin (under my breast and underarm). Works nicely although gets sort of gritty if you don't brush it off before applying lotion.......I know this part first hand!

Kay_G

Had #6 of 25 today (and will also get 3 boosts).  So far, so good, very quick and easy.  I see my RO once a week too, but on Mondays.  And a nurse......and a resident or fellow...... There are some good things about going to a teaching hospital and some not so good.  Not sure why, but they do not get the residents or fellows involved with you at all when visiting the MO or getting chemo.  I think the MO residents and fellows only work on clinic patients. 

marthah

Kay,

So you use lotion AND corn starch? Hmmm...

I too am having all of treatments at an academic institution, and I wouldn't have it any other way. But then, I work for that particular university (in research administration), and I previously worked for the MO division and department of surgery, so I knew the treating physicians well. 

The MO group only had fellows -- no residents, and not every MO had a fellow assigned to them. And I actually think a 3rd year resident did my surgery, with my BS supervising/watching. May be why I have a bit of a pucker in my scar, but, oh well... I tend to think, based on my professional experience, that the care you receive at an academic hospital is more cutting-edge than what you might receive elsewhere, but I may be biased.

marthah

Teresa5,

I'm still having some fatigue/neuropathy from chemo, too. I'm 1 mo & 2 days PFC, and my legs still feel like I have lead in them! I asked my MO about it b/c I wasn't sure if it was because of anemia, but she thought it was still some residual neuropathy. My feet/toes are pretty much back to normal, and my fingers are too, with the exception of my fingertips/nails on the right hand. My nails are a mess! Oh well! They'll grow out! 

I'll be glad when the fatigue is gone (and I'm kinda getting sick of the hot flashes too, but that's another story/post! )