March 2011 Rads

Teal3Pink1

Hello everyone! My simulation is scheduled for March 16 with actual treatment starting about a week after that. I was hoping to get into a partial breast radiation trial to cut the time down to 2 weeks, but I do not qualify. So we are planning on 15 WBR (prone position) followed by 5 boosts. Now I just want to get the show started so I can begin counting down. I'm hoping to get an early morning rads time so I can go to work afterwards or take the train straight back home later if I begin to feel too tired to go to work.

Julie47: What an insensitive comment your RO made! I can't imagine being told to just hop over for a little rads at lunch every single day for 8 weeks! How stressful! And that's before factoring in the actual treatment and side effects! And it really sucks to be put in an all or nothing position. DO NOT feel guilty about going out on disability--you did not create that work situation. In the past I have stayed out on short term disability when I could have worked 3 or 4 days a week while in treatment b/c there was no provision for coming back part-time. Do what you need to do and be kind and gentle to yourself.

I also saw a physical therapist last week for a very mild case of lymphedema and was told that rads could make it worse. Just one more thing to worry about. Oh well, at least I get tattoos.

Eloise

@srbreastcancersurvivor:  That's really a pain that you have to track down providers who take your insurance.  I'm surprised your surgeon would refer you to out-of-network providers in the first place.  I agree with GirlFriday, see if there is someone at the surgeon's office who can help you navigate.  I have Kaiser so it probably works differently, but my surgeon referred me to the MO, who referred me to the RO.  The MO talked to me about the pros and cons of tamoxifen, which I decided against taking.

The CT scan is done as part of the radiation planning process -- the docs and technicians need to target precisely where the radiation is going, so they need a totally accurate map, if you will, of your body.  It isn't done to look for disease elsewhere in the body.  They'll also do X-rays once a week while you're getting treatment.  Some people have also had bloodwork during treatment, I didn't.  

marjie

Teal3Pink1 - don't get too excited about those tattoos, lol!

grannyjuju

Teal3Pink1. . Thanks for sharing your thoughts and experience. It looks like I will be taking my short time disability for my 8 weeks of rads. Side effects or not there is no way I can do this during my lunch hour everyday.

Angelice

hey Girlfriday thanks .. when i meditate i  also get dizzy i  try to have a crystal and  white light my self, sometimes have a candle burning also  white

Atigua thankyou for the welcome

i also had the tattoo  i mean 3 dots  of ink lol

libraylil

Julie47  many times I have complained about the lack of social skills of RO, and the radiologist that do our ultrasounds, etc.  My BS always laughs about this.  The first time I met my RO he asked me if anyone had said anything to me about a mastectomy.  I was getting ready for a re excision.  This made me cry and nutt up.  Last week when I mentioned this to me he said" Oh I just meant if the BS couldn't get clean margins".  I really like the RO he is very meticulous, but he looked at my breast after the fluid was drained and said "looks better, much flatter".  I told him the mastectomy comment made me cry, and he needed to draw an analogy between someone telling him his man parts would be removed.  Anyway the office has my TX scheduled at 3:30 so I can leave school and be there.  The facility is really close.

The Radiologist that did my biopsy was such a cold b**ch.  I have told my BS they better make sure I am never scheduled to see her again.  I was not going to let her put those wire locators in ....no way.  I saw a really nice man, with a personality that took care of that and I was not scared at all. They are just different.  libraylil

Adey

15 of 28 today and I'm on the downhill side.

grannyjuju

Libraylil........

Yes, alot of these RO's, BS and others need a few lessons in bed side manner.  You would think that doctors who CHOSE to go into oncology/radiation sort of knew what they were getting into.  If they lacked the compassion and empathy for that particular field of med maybe they should have become a podiatrist or something............lol (did I spell that right?) 

Pegs

i guess it depends on the type of job you have, but i didn't really have any problems with radiation, didn't feel any more tired than usual.  why not wait and see how you feel after the first week or so and then decide.

dogsandjogs

To Eloise:

Thanks so much for explaining about the CT scan. I had no idea they have to do all these procedures. My daughter-in-law had radiation for a cancerous growth in her groin and only mentioned the tattoos.

I am also astounded at the cost one of you mentioned. Since I'm in So. CA. it will be even higher! I just got my EBO on the hospital charges: $25,000.00 (for a one hour surgery!!) and that only includes the operating room, recovery, drugs, etc. (not the doctors' charges) 

I do have a navigator nurse, provided by the breast center who did all the tests, but she was out sick for most of February. So the surgeon's office has done all the scheduling and they are slow---or understaffed and too busy, who knows.  Between them and the breast center (both places highly regarded) it took from late November to early February to get to the surgery date. All tests took forever (to schedule as well as doing them - 3 hours each visit.)  You would think that these huge "centers" would be better organized, wouldn't you. But NOOOOO---not so.

The nurse did give me a name of an oncologist who takes my insurance. I'm calling him today.

After I talk to him/her? I will decide on whether to do the radiation.

Thanks again everyone!

Teal3Pink1

Adey:  Hurray on getting over the top! Now tuck and drop to the finish line! I hope it goes quickly for you!

Regarding doctors and communication:  I've been really fortunate to have good communication with most of my doctors, but once in a while I'll run into someone and just can't believe my ears. It never ceases to amaze me how much unthinking and unfeeling there appears to be out there. Although it would be nice, I understand that not all doctors are equipped for great communication and empathy. However I would settle for a requirement that they all take a "What NOT to say" class.

LibrayLil:  Great job standing up for yourself with your RO and insisting on someone else for the guide wire. It's so hard to confront someone who is involved in helping us stay alive and tell them that what they said wasn't helpful. Sounds like you have a great BS!

Anonymous

Hi, all. I'm joining you from the February Surgery/Mastectomy board. (I had a February 22 uni-MX with delayed reconstruction.) I believe I'll be starting rads this month. 

thrmine

#1 today, so far so good.  No redness.  

Teh treatment is, IMHO, a very strange experience.  All the massive machinery the lights, the noise...pretty unreal.  But I am doing alright.  Start the lotion today I suppose?

Anonymous

"Guide wire?!?"

*Gulp* What is that?

libraylil

Went for my simulation today.  Not an unpleasant experience but very weird.  I agree with thrmine on this.  The weird green lights, voices that you can't see because you can't move and the machine.  Very bizarre.  However, one step down and get the real deal tomorrow.  Kick any stray cells to the curb.  I really think this will be a much more "eerie" experience than the chemo.  Also the going daily will probably start to annoy me sooner or later.  libraylil

marjie

Windlass - what guidewire !??

shooshoo23

Had my ct scan today and got 4 tats. Friday I will go for a 'planning verification visit' and get 2 more tats. Then the real deal will start Monday the 14th. The ct scan freaked me out a little. I agree the big machines are kind of ominous. 

Marjie & Windlass- Maybe libraylil was talking about the wires they place to mark the area for the surgeon when having a lumpectomy?? 

marjie

Shooshoo - you go thru all that and get the tattoos then when you go for rads, they still scribble all over you everyday when then get you set up, lol.

I had a lumpectomy and never had any wires...thank goodness!!  Never heard of that actually.

Eloise

The guidewires are used before surgery in situations such as DCIS where the problem area is only visible on mammograms -- there's no lump -- to guide the surgeon to the exact area that needs to come out. Mine wasn't painful, they just keep telling me not to look as they were jamming the wire in there... Anyway, not to worry, no wires for radiation!

marjie

Good lord!!  Kind of glad I had a lump.....

LOL that sounds awful!!

shooshoo23

LOL! I did have a 1cm tumor but then I had a kind of a 'buckshot' pattern of DCIS spots. I think the whole area they removed was about 6 cm. I did have the wires and they didn't hurt. I went to the breast center that morning to have the wires put in and then drove to the hospital with the wires sticking out of my boob! LOL! I had 4 of them. I kept joking that I looked like robo cop! LOL!

Teal3Pink1

I wish I had your RO, Eloise! I had to get a guidewire right before my lumpectomy b/c the IDC wasn't palpable. Yes, marjie, it was awful and that's been the worst part of this whole experience. I was told to sit in a chair with wheels that they rolled to the machine and I thought to myself "this can't be good." Thank goodness I was sitting down b/c even with the local, my knees would have buckled a couple of times if I wasn't sitting. Maybe I tensed up too much everytime the assistant put her hand on my arm to hold me still. I keep telling myself that rads will be a piece of cake after that.

Teal3Pink1

It all sounds so sci-fi. At my "indoctrination" last week, my RO's nurse told me to not stare into the beam. 

Glad to get some first-hand information here before meeting the machines. Thanks everyone! 

gingerstx

I'm now officially a member of this group, having had my first rads yesterday.  Felt great afterwards despite having had to lie in that so painful you want to scream arms extended over your head position again for about an hour while they rechecked all their markings and calculations made from my simulation session last week!  The saving grace was that at the end of the session they did my first rads... yay!  I'd been concerned that I might have to wait another week to start them.  My doc doesn't see the need for permanent marks, so my chest looks like a 2 year old was let loose with a magic marker all over it.  My only problem is that I had a sleepless, restless night last night and I'm wondering if this could be due to the rads.  I'm 67, so though I don't sleep as well as I used to, this wasn't normal for me. 

libraylil

Off topic but I have been shocked to have some BC patients say their Radiologist did not use lidocaine to numb the area before the guide wires were placed prior to surgery.  My BS had already told me it would be numb.  Since I especially requested not to get the "ice queen b" of radiology I had this huge "Shrek" man with wild hair.  He was so nice, generous with the lidocaine and it was over before I knew it. No pain, just pressure. The nurse that works at that facility is so wonderful.  She was with me when I had my initial biopsy and just let me cry, vent, etc.  libraylil

crlacey

Wow, no lidocaine before putting in those wires?!!! I don't think I could have handled that. Just watching those wires go in was painful enough for me.

My official report is 3 down and 33 more to go. Yesterday was also the weekly check-up with the doctor. He is watching a small red bump on the breast. He couldnt figure out what it was or why it was there. He was a little concerned about it being an infection especially since I'm only on treatment 3 and having some tenderness already. He also didn't seem too happy about the insission area still being a hard lump. (Surgery was Dec 20) Anyone care to share what their surgery site feels like since I figured a hard area was normal as the BS has never showed concern?

shooshoo23

I definitely had lidocaine with my wires! I can't imagine it without! UGH! 

crlacey- my breast is hard at the incision sight too. It's not really a lump, just a very firm, dense feeling area. All of my drs (BS, MO and RO) do an exam at every appt and no one has showed any concern.

thegood5

crlacey~  I just had a lumpectomy/SNB 12 days ago and I am going to the Dr. today to have a lump drained from under my arm...guessing it's a seroma?  it's about the size of an egg and just appeared the other day with a lot of pain, I can hardly put my arm down at me side.

Anonymous

Sorry to get everyone off topic, but I appreciated all the information about the guide wires.

It sounds like a lot of us could have a good cry over painful breast procedures. (Teal: My heart goes out to you, especially!) Before they whacked my breast off they tortured it with both a deep biopsy and the injection of the pre-mastectomy radiation dye (technicium). In both cases, it felt like they used no pain killer at all. I still shudder every time I think of those procedures.

Though they did give me lidocaine (OUCH on the injection of that alone!) they went in immediately afterwards with the other needles, giving me no time to get numb at all. I had tears pouring down my cheeks with both procedures, my back was arching up to the ceiling, and it was all I could do to stay on the table. That was so much harder than the mastectomy or anything else that hasbeen done to me so far. But I'm still new to this, so I worry that more painful procedures may be in my future.

Now you all can understand why I freaked when I heard the words "guide wires" my first day on the radiation board!  Ha ha!

GirlFriday

thegood5:  Hope the "draining" goes quick and painless!

I thought the whole simulation process was really overwhelming at first.  I just kind of laid there so tense with all the machines whirring around me. Then I realized I was holding my breath to, so I forced myself to breath shallow to start and then even out.  I've just finished 7/33 rads appointments today.  The rads machine is slightly different than the scanning machine they put me on to program the rads machine.  There's this goober of a male tech that always puts on music when he's one of the techs.  But when there are just two women, they forget the music, as I"m usually one of the first appointments of the day.  I think the music makes it go better, so ask if they have it at your rads center...and the warm blanket or sheet is always nice too.  I just figure that I wrap myself in steel frequently...cars, planes, trains...and each of those machines has the opportunity to crumple and kill me.  The steel machine for rads appointment is healing me.  I picture a green beam (the color of the heart chakra) coming from the machine as it runs...and just imagine that each whir and click and hum is the focus of the healing energy. Of course it's just a game in my head, but I have no fears for the next 26 sessions.  Good luck to anyone just starting outRads will be over before you know it!