Winter rads 2014-2015

to WndrWoman,

Is there a chance the woman before you was having radiation to her head area and that is why she needed to remove her wig?

At my center, not every individual after or before me was there for breast radiation. Sometimes they had to change the set-up because I was there for breast and the person before me was not, male or female. I know males can get breast cancer, but I know some were being treated for other body parts.

WheelyGirl,

thanks.

and now i think i know where your "name" comes from!!

I have become friendly with the wig woman and she is there for breast cancer. She sits and talks with my husband on her way out which has been nice for both of them. But I felt asking her was too personal. Each time I saw her wig in the dressing area I felt like I was violating her privacy even though I couldn't help it and she could have covered it.

No pretty pictures to look at (or mobile like the dentist provides) - but music on the radio.

I'm fairly new to this site. Was diagnosed July 31, 2014, finished 8 cycles of chemo, I am booked for surgery in two weeks, (February 24th) and will follow that with radiation therapy - My simulation is booked for March 9th, with a tentative start date for treatments around March 30th.

I do have one advantage to this part of the journey. I actually am a radiation therapist by occupation. My radiation will be done at the hospital I work at and it will be my co-workers who deliver the actual treatments.

I know all the procedures used for breast treatments, so I am going into this part with no fear at all. I am willing to share any information I may have with anyone who is interested.

I will admit however, that it is very different being on this side of the bed. I've always been the therapist, and now I'm the patient.

RTChris, welcome! Sorry you have to be here but glad you found this board.

You'll see that we seem to face various methods of treatment and care, different SEs etc.

We all suffer, get scared, get mad, have good and bad days!

I don't know if this will help explain anything or not, but in my center, and many others I'm sure, the narrow, hard, bed is for reproducibility of set-up. Every plan that is produced is specific for each individual patient, and since we try to avoid treating as much healthy tissue as possible, having the daily set up stable allows for more accurate treatments. That is also the reason for arms up position. In my center the only time a patient is treated with an arm down is if there is a physical limitation to their movement (such as a frozen shoulder).

Even though I am not even slightly afraid of the radiation treatments, it will be weird having my co-workers perform the procedure (although our management is allowing me to choose the therapists I want to treat me)

I have a similar background of childhood sexual molestation, and rape, but at age 63 I no longer have body issues as far as being handled and loss of control. I'm sure the 27 years of marriage to a man I can trust is helpful. My issue continues to be my shoulders, which my RO is treating with narcotics. It's not a good solution, as I can't just take them for rads, I have to take them regularly, because the positioning injures them all over again every day. I don't consider myself a litigious person, but I want someone to pay for this (not money, but some kind of consequences). I had no pain in my right shoulder before RO sent me to PT. Now the pain is a constant 8, peaking to 10 on occasion. I think the rotator cuff has been damaged.

Our rads room does have a backlit sky scene on the ceiling, but I can't see it because my head is turned away and the table is moved to my right to radiate my left side. There is no music, nor offer of any. I am able to play music in my head, but what I've been doing lately is saying the Rosary. I'm not a Catholic now, but I've found the combination of prayer and repetition is helpful to lose track of time. Personal prayer didn't work as the pain was so distracting, but using the rosary as a kind of mantra has been helpful.

Welcome RTChris. It must be very strange for you after treating many other women to now have the very disease you have devoted your work life to eliminating. Will you continue to work during treatment? Do you feel uncomfortable having colleagues see your body so exposed?

Wigless here, and not happy! When they made the head form I had to take it off. They said that my head had to be exact for the radiation and the tattoos. Well the radiation is for the boob I no longer have, so what does the head have to do with it?? The second day I left it on, and nobody said anything. Every day since as soon as I give the info, they tell me take it off. I get the fact that they need to line up the tattoos, so they have to see them. But why can't they cover my chest after they line it up? If the rads go all the way through my body, I would think it would make it through a little washed out hospital gown!

After going through chemo and surgery I am finding radiation to be a different day. I loved all of my other nurses and techs, but the ones I have for radiation are not on my A list. They have a "all business" attitude, and not a warm fuzzy feeling from any of them. They are not so friendly, use Sharpie markers like I am a whiteboard, and never tell me much. I asked them about the dose of radiation, and I was told it pretty complicated but I could ask my RO. And when I asked for information about side effects, I was told we deal with that when it happens. Happens?? Exactly, what happens and when does it happen, and how do you plan on fixing it?? Grrr......I will so glad that I never have to go back there!

We do have a very nice lighted 3 panel tropical beach scene on the ceiling to look at, my favorite place!

i get rads in the prone position so by default I am less exposed but I can say that the techs really make an effort to keep me covered from the moment I have to take off the gown. They hold a blanket behind me and as soon as I take off the gown they put it over my shoulders. When taping wires by my healthy breast they only move the blanket enough to tape them, never exposing my breasts. When I'm on the table and they line me up, they cover my back up to my neck with the blanket, and again as I am trying to get up once it's done (have a little bit of hard time due to achey stiff joints) they cover me up. Finally they take the wires off like they put them and hold the blanket behind me when I wear the gown. I don't see why anyone needs to be exposed in areas other than that being radiated. It just shows the techs are not considerate I think. I also don't take off my wig.

Good Morning!  As most of you are aware, I had one of the better rads experiences.  From the moment I first walked through their door to the final bell ringing, I have no reason to complain. The entire office was a serene beautiful well decorated environment with a giant tropical fish tank, good music and comfortable couches and chairs. The dressing rooms were mini-waiting rooms with two another comfortable chairs, potted plants, and good current magazines. Each dressing room had 2 locking cabinets for personal items. The "gown" I changed into from my street clothes, was a bat-winged cape that fell to the waist, opened in front, and snapped at the neck. It was rather voluminous, with openings in front, and under each arm, providing access to the tattoos without exposing my breasts before, during or after radiation.  As a matter of fact, I was covered up to my shoulder on one side (can't raise that arm above my head without pain) and armpit on the other with a warm blanket.  A foam block was placed under my knees, and I was cradled in the foam form for my head and upper back.  I looked at the pretty light picture on the ceiling, shut my eyes, and slide into the tube and headed to my secret beautiful vision for the next 8.5 minutes.  The droning and clicking of the Tomo machine fit right into my count.  I was gone.  I turned it into a moment of peace and serenity. 

 I was treated with gentle care and compassion, and respect and provided with explanations of every action done to me and for me.  The only time I gave up my wig and uncovered my chest was at the simulation and tattoo session and that was apologized for prior to the procedure. New federal requirements are the culprit in the photo sessions as well as other personally invasive procedures. Unfortunately, whether we believe in them or not, the federal health laws do take away personal privacy.  If these things are offensive to you, ask if they are optional.

BTW: The staff of my radiation clinic is 70% male - the doctor, the nurses, and techs, and the computer program set up tech are all guys.  To a man, they are all young and handsome - well except for the computer guy who looks exactly like what a brainy nerd is suppose to look like. (I have a particular fondness for nerds.)  They were all extremely professional, kind and considerate. Would this bother you?  (Even old married ladies can enjoy getting fussed over by the Chippendales.) 

Here is a consideration and question.  Did you interview and visit the office of your RO prior to the start of treatment?  Are you aware of other options in your community?  There were another options available to me.  I chose a privately owned radiation clinic that provided what I perceived as the best situation for me.  Newbies, note the differences in treatment that have been described in this topic and get the best situation for you...you are going to have to live through it everyday for a month to six weeks.

My center changed ownership part way through weeks of treatment. It went from two male doctors to one of each, female in charge. A man came in as "boss" tech. All the women techs were very careful to say that he was one of them and okay to there and asked if I was ok. He was no Chippendale though!!

I am laughing at descriptions about going in a tube because I shut my eyes as soon as I hit the table. I could feel movement but did not want to see machines. Maybe there was a pretty scene and I missed it.

CoyoteNV, the center I go to was my only choice for rads. I was told that I had to go to the same center for chemo and I refused so I went to the CC close to home and I am so glad that I did. It's all new, bright, and windows everywhere. I had a great view for chemo, and the nurses are fantastic. So having to go to the Cancer Center triples my drive each way, and I am not so fond of the people there. I feel a disconnect, just not sure why. I feel like I am just a number moving through my rads there. So I am glad that I won't have to go there often, just for my PET scans, and for follow up with my BS. Everything else I can do close to home at the CC. So I hope I am done after the next 18, and no boost week. I'm not too sure what that will do for me at this stage of the game.

I suggest that if anyone has any questions about any aspect of their treatment, they should ask their RO. I thought that having to remove your wig was odd, then someone mentioned a head form. I don't have to remove my wig (although I wouldn't mind), and my head doesn't have to go to any special place. Then I remembered that my RO told me that they were not planning to radiate me very high on my chest, and I wonder if they are going high up toward your neck, maybe head placement is more important.

Im not erected in what a rads tube is. Are some of you enclosed in something? I'm on a table, and the machine has a long arm that rotates around me, so no feelings of claustrophobia. I watch the machine, there are shields inside that change the shape of the beam so I watch how the shields change when it is on my left side. Once it rotates to my right, I can't see the machine any more because I'm supposed to keep my head turned toward my left a bit

Such differences. Amazing. They wanted to leave me exposed, I protested, and they kept me covered with a pillowcase. I hated the change of techs every week because it was like I had to start all over again and train them. WHY couldn't they just read the freakin' notes the first techs made in my chart??? I did not have any kind of head form, was just told to keep my head to the right as far away from the machine as I could. There was certainly nothing pretty on the ceiling. I had to have both arms up for reasons unknown. Any question I asked any of the nurses or the RO was dismissed ("you won't get any of those side effects, so don't worry about them") and when all is said and done that caused me DAYS of excruciating pain and tears because of their lack of information. Any symptom that I brought up to my RO was dismissed ("Oh, that can't be because of radiation") so I quit telling her things. The waiting area was full of decorated bras, sort of insulting to someone like me with a scarred landscape of a chest and certainly nothing to put in a bra. The techs were all female and I would have protested and refused a male tech or nurse. All my doctors are female and if they have male interns I apologize nicely and refuse to let them look at me.

Sadly, I'm pretty sure that I'll be back in that center again for radiation treatment of the bone mets, but I hope it's not for a very long time. And it will be with a different RO who will treat me like an intelligent person who is interested in her own treatment and recovery. I have cancelled my one-month followup with her. If I need any more care I will find someone else.

WARNING: Rant that is not aimed at anyone is coming, along with a graphic photo. If either of those bother you, grab your scroll bar and go down past the end of my post.

I think that it is dismissive of people who have had a hard time with rads or any treatment to say that most people don't. I personally talked to several patients at the rads center who are not on BCO but were having a terrible time like I was. To minimize my experience, THEIR experience, is to dismiss it, is like saying, although unsaid, that it's somehow our fault that this happened to us and we didn't just sail through the treatment. I think that a lot more people have trouble than what we think.

Here is my wound about 2/3 of the way healed:

Now, as bad as that looks, that is so much nicer than what it was when all that skin just slid off my body. Does that look like it was fun to go through? Does that look like I had only the "expected" side effects? I'll tell you what it is. It's barbaric what has been done to me and others. Why can't we find a cure (or better yet, PREVENTION) of this terrible disease? Why can't we find better treatments with less side effects? NO ONE should have to go through this. And my RO AND the center should have TOLD ME that this was a possibility.

Rant over. But I will never stop telling my truth. For many of us this is not a fluffy pink cloud experience. I no longer have any filters. I'm probably no longer fit for polite society.

Off to go change my bandage for the hundredth time...

JJ