April 2010 Rads Group

Tarry1

Hi I had my second radiation treatment today.  Yesterday, I felt ok after the treatment but today my breast also felt sore .  I put some of the glaxo moisturizer on  it to keep it from getting worse.  I feel a little better now though.  Funny, the rad tech aked me if I had any problems with the fist bout and I said no, then he proceeded to tell me that  more than likely I would only feel any side effects one week before I'm done treatment.  I will have to tell him how I felt today.  I ddn't get a headache though.

suzieq60

Hi Girls,

I asked the rad onc's registrar today about the number of zaps. She said it was standard treatment in Australia to have 30. Didn't seem to know if grade of the cancer has anything to do with it. If I get to see the real rad onc next time I'll ask her too. She did say that burning should only start about half way through the treatments. Hope it takes longer than that. I have an echo today and was quietly glad that I have no burning yet. The first echo I had was soon after the surgery so it hurt a fair bit.

Sue

sweatyspice

I'm supposed to start this afternoon (my second attempt at starting, as last Monday was a bust).  My breast has been tender for the last few days, which is a new development.  Now I'm scared, I think I'll call the center....I don't want to put this off any longer, but ...are you supposed to do this if you're tender to begin with?

I phoned, I'm going to go in a bit early and see one of the rad oncs (mine is out today, so I'll see a colleague).  Having a discussion with a Dr. first will make me feel better, even if their recommendation is to go ahead.  At least I'll know the situation will be monitored closely.

HATE THIS

jarlwin

Hi! I began rads on April 7.  I will have 33 treatments which includes 5 boosts. I have been very nervous since day 1.  I was very surprised when I had severe pain the evening of day 1.  It was throughout my breast and lasted about 6 hours.  When I called the clinic, the nurse said radiation does not cause pain and to come in early to see the doctor.  Ten minutes befor the appointment my sister called and got on the internet and found this sight and read me comment after comment of women who had pain with rads.  When I got to the clinic, the doctor said that she wanted me to know that the pain was not from radiation.  I was relived to be able to tell her about this web sight.  I had intense pain on day 3 and started Lyrica on day 4.  I can't tolerate the side affects and will drop it today which is day 6.  Hoping the pain was a fluke, but have made an appt. with another rad onc.  Thank God for this sight!

KatieMom

I don't get it.  I had pain and asked my onc and she said the same - no pain from rads, yet we seem to have pain... hmmmmm.Anyone else with pain in the first couple of weeks?  My pain seems to have subsided with the end of my period, but certainly more sensitive than the good side.

Katie 

suzieq60

I had some sharp pains before I started radiation which I was told were nerves regenerating from the surgey

sweatyspice

I went in, saw one of the rad oncs, she thought I was fine to go ahead with the zapping,  So I have now been officially zapped.

Of course, after last week's debacle, the person who changed my rads schedule apparently accidentally DELETED all my old appointments from the computer system, which seems now to have only the appointments we changed or added as of last Monday.  So now, I'll have to re-schedule everything tomorrow, and I may be shuttling from time slot to time slot, and treatment room to treatment room...(I think there are 3 rooms).  I'm just so frustrated!!!!!

I had scheduled an 8:30am app't so I could go to work afterwards, and I scheduled it well in advance of starting rads because I know it's a coveted time slot. As it turns out, I've gotten laid off since then but...what, should I be lucky enough to find a new job, I won't be able to take it because I'll have to pop out to radiation in the middle of the day????  I'm SOOOO annoyed.

At least in the short term, I'll be able to sleep later.

And my breast feels weird and kinda hurts, but I'm trying to decide it's psychosomatic.  This whole rads thing is not going well at all.  If I was more of a believer in God, I'd say God was telling me not to do it.  Now I'm afraid of all the other things that can go wrong, the serious things.

WAAAAAAH!!!!

Tarry1

I went for my third  round  of radiation today and I told the radiologist that my breat was hurting yesterday, he told me that it was too soon for me to be having pain , maybe it was because of something else.  I told him that I would let him know if I had any pain today. So far I dont,but tomorrow I see the rad onc and I'm going to tell him as well, So yes I did have pain and Ithink it was from the radiation.

jarlwin

Yes, I too had serious pain on day 1 and 3.  Today is day 6 and the all over pain has subsided.  I used aloe vera gel on my breast because the entire skin is burning and lightly red.  I am medium fair and burn the first time out in the sun and then tan.  Because of the burning today, I really am fearful of the road ahead.  Is anyone else having this experience and what are you doing for your breast?

suzieq60

Jarlwin,

I'm putting aloe vera gel on as soon as I get home. I keep it in the fridge. Then not long after I'm using Vitamin E cream from Faulding - Essentials range (the rad centre recommended this brand). I do this later in the day and before bed. So far so good. I've had 7 now - no burning yet.

Sue

Alcie1

I didn't have any tats, and I'm glad I refused them.  I had marker and sticky covers.  One came off and they said they didn't need it as they only use 2 of the marks anyway.

My personal feeling is that tats are like concentration camp numbers.  It's a label and demeaning to me.  Since I feel this way I refused, and my rad onc was fine with it.  Not everyone has a problem with tats, but then I don't have any piercings either.

Now it's over and I have no physical reminders of the ordeal, and for me it was pretty awful - radiation sickness (nausea etc.).  I still have the permanent low white count, but that's invisible.

suzieq60

The tats are not even noticeable as I have lots of spots anyway and they didn't even hurt. One thing I've noticed so far is that the breast being treated is much harder than the other one - at least no burning yet.

Sue

dsj

Okay, I'm going to put my head on the block and say that I find the comparison between radiation tattoos and concentration camp numbers extremely problematic.  First, I think it diminishes the reality of what those numbers were for victims of the Holocaust.  Second, I don't think it's fair to radiation technologists to suggest that their marking of us is any way an attempt to demean or dehumanize us (which is exactly what the purpose of the camp numbers was). 

 The tattoos are completely inconspicuous (the technician has to use a flashlight to find mine) and are there to make my radiation treatment safer: more accurate.  Of course if anyone wants to refuse radiation, that's their right, as it's their right to refuse tattoos.  But I just don't think it's fair either to victims of real Nazi persecution or to the medical personnel who are administering radiation therapy to say that the tattoos we receive are like concentration camp numbers.

sweatyspice

What inevitable and permanent low white count?

Two zaps down.  The calendula lotion smells disgusting.  My breast still feels weird, and I'm still trying to chalk it up to my imagination.

I used some Aveeno Skin Relief lotion before I went to bed (didn't ask permission) but then noticed a) it contains alcohol, and b) I was still kinda slimed in the morning.  It all seemed to come off in the shower before rads, but now I'm scared I should not have done it. 

This whole thing is really messing with my mind.

BossyRenee

Had my ct acuity  x-rays today. Will start rads on Monday with 28 treatments instead of the originally stated 36. wooo-hooo! The experience today wasn't bad at all, Looking forward to get it over and done with. Gonna use 100% aloe vera gel to start and hopefully I won't have the skin irritation issues.

Good luck to all!

BossyRenee

redsox

I am going to second dsj that the comparison between radiation tattoos and concentration camp numbers is not just problematic but insulting to both victims of real Nazi persecution or to the medical personnel who are administering radiation therapy.  The proof is in the original post which stated, "Since I feel this way I refused, and my rad onc was fine with it."  The ability to refuse tattoos and still get the treatment shows the total disconnect of the comparison. 

CinCan

My tats are the size of a pin head and compared to my surgery scar from the lumpectomy, the scar from the ancillary node dissection and the scar from the port, the tats are the least of my reminders that I am dealing with BC.  They way I look at it, all the above are battle scars.... I will fight this battle and Win the Battle of Breast Cancer!!!!

MNLinda

CinCan, I know what you mean about not feeling very friendly - I couldn't help being a little sullen.  It might have something to do with the marking, which made me feel sort of like a paper being graded and found wanting.  I felt a little like that being marked for the mast, too, but at least then I had a little anti-anxiety stuff in the IV.

I'm starting the 19th.

wyldblumusic

Hello, everyone.  I should also jump in here.  I've already had a CT and the paint-pen art done.  I'll be getting x-rays and tatts next week and should also be starting the actual zaps.  I'm looking forward to getting this show on the road.  One of my favorite days of the year is the day that the pool opens. I'll have to miss it this year, but I sure can't wait to go swimming (with SPF gazillion in hand, of course).

sweatyspice

Three zaps down, 22 to go.

Today I brought my Black Rebel Motorcycle Club CD and I convinced them to turn up the volume.  Made the experience go more quickly.  I think I'll bring something different every day, so I don't ruin anything in particular by strongly associating it as "that's what I listened to during rads."

Still hate the way Calendula smells.

Today was easier.  I guess my mind is adapting to this a bit.  The unknown of what I'm doing to myself, what will or won't happen, all that stuff still terrifies me though.

RegulJ

I start on Monday and get zapped after my 7th Herceptin treatment. The only thing that sucks is that they don't have any early openings and my appt time is 1pm. bleh

sweatyspice

Question - I'm relaxing on the weekend between zaps 3 and 4.  I can tell that I'm already swollen.  Has this happened to anyone else?  Will it keep getting worse?  Will my breast explode in week 4?  Will it ever go back to normal?

Maybe I should post this in the Dec rads thread......but did anyone else get swollen at the beginning?

KatieMom

I am 10 in now, I seemed swollen after the first week (5), but it seem to be evening out now.  I was also getting my period right around then, so it was all bad.  Much better now after week 2.

Katie 

regalbee

I just started radiation last Monday.  I am very fair skinned and do not tan.  When I express this to the radiation team, they tell me that it doesn't necessarily mean that I will burn more than most.  I don't know whether to believe them or not.  Any thoughts?  BTW, I've had a lumpectomy and sentinal node biopsy, and the chemo had completely obliterated the cancer!  So I sometimes wonder what the rationale for the radiation is, altho I understand it is the protocol.

suzieq60

Well girls, 9 down 21 to go - sounds like a lot. Today, I actually got the techs to tell me their names. I felt so horrible I hadn't remembered them when I met them. They are so nice, they deserve someone to call them by their name.

I finally reached the safety net thingy we have over here, so now I get much more back from the government for the radiation. I just wish radiation was covered by our private health insurance over here. I should start a campaign. The place I go to is not short of customers, so I guess a lot of people don't want to be treated by the public hospitals here (they are in a mess) and prefer to pay for it.

Hope no one is burning yet - so far so good.

Sue

sweatyspice

4 down.

Today's soundtrack: U2, Zooropa.  It turned out to perfect for rads. 

Walked into the dressing room, a woman was still in there, she'd neglected to close the door.   Chemo brain?

Still trying to decide that the weirdness I feel is psychosomatic.  It's not really happening.  I am not really intentionally doing damage to my tissue every morning.  Nah.  But I feel like a Peep in the microwave.

http://www.youtube.com/watch?v=ju3_gMMa5EQ

BossyRenee

Hi all! 1 down 27 to go. Techs were really nice. They respect your privacy. I thinl I'm gonna get thru this just fine. Put on aloe vera gel as soon as I got off the table; gonna try and prevent those nasty burns I've seen on others as much as possible. Hope everyone gets thru their treatment with little to no trauma.

CBreeze

Hi Ladies:

I just found this board.  I started my radiation tx on April 1.  I didn't get a warm fuzzy feeling right from the get go.  They show me my pic on the computer and ask if it is me, ask my DOB, ask what part of the body they are treating.  Then I get inside and lay down in a body cast.  They keep having me move up and down and over.  I tell them it doesn't feel right.  They finally realize they pulled the wrong cast.  DUH, did I get the wrong tx too?

I had gotten 3 tattoos at the 1st simulation.  They told me I would get the next 3 after the 1st tx.  I was fine with it since the others were so small I can hardly see them.  I get home after the 1st tx and see a giant blue mark on my chest - high up in a prominent place.  There are lots of sharpie marks on me so I try not to freak out telling myself it will come off tomorrow when I shower.  WRONG.  I got out of the shower and started to cry.  It was not a sharpie mark, it was the friggin' tattoo.  It is the size of a pencil eraser.  I am freaked out.  I am someone who runs to the dermatologist with the slightest thing to get it off my body.

The folks at radiation have been very dismissive of me.  They are trying to tell me it will fade.  I don't think so.  I have 5 other radiation tattoos I got 7 yrs ago and they have not faded one bit.  This one shows with every top I wear except turtlenecks.  Very flip the onc goes, you can have it lasered off after tx.  I asked her "is the hospital going to pay for it?"  they must think I am made out of money.  I am a single woman trying to support myself and have been financially devastated by all this.  My insurance does not pay 100% on anything and I am responsible for all the co-pays.

I hate the friggin' thing and have cried every day since I got it. You can't cover a tattoo with cover stick or make up.  I even spent $22 on a dermablend stick, which does not cover it either. It is a constant reminder YOU HAVE BREAST CANCER.  I even caught a co worker checking it out on my chest, and it was a woman not a guy.

They sent me to a dermatologist to find out how much it would cost to get the one tattoo removed.  100 bucks.  The hospital wanted a letter from the dermotologist stating the cost and the procedure.  The dermo refused to give it to me.  I can't believe it.  They will not give me any sort of statement saying what it cost until after the procdure is done and paid for.  WTF!!

I was fine with all my treatment, surgery, chemo, hair loss, sickness, until this.  This has pushed me over the edge.  I cry constantly and find myself with suicidal thoughts.  To top it off, all the women I have spoken with in the waiting room have showed me their fried to a crisp, blistered skin.  I'm ready to quit rads.  I've only had 13 tx with 20 more to go.  There is only so much a person can take.

thanks for letting me vent.

suzieq60

Welcome CBreeze - I'm so sorry they've done that to you. Was it a mistake to do it so big or do they do that to everyone? It doesn't sound like you are having your treatment in the right place. It sounds just awful.

Sue

MNLinda

I was scheduled to have my first treatment today, but it has been put on hold because yesterday my right hand swelled up.  My rad onc looked at it and said, yep, that's lymphedema - but I need to see their lymphedema specialist to confirm.

The rad onc estimates I have an approximately 40 percent chance of recurrence without rads, and can drop it to about 15 percent with rads.

I think given those statistics I have to take the treatment, but I do want to talk to the specialist.  The treatments will worsen the lymphedema, but I don't know how much.