December 2009 Rads Group

Linda_NJ

Scan and tatoos on 11/20/09.  Starting Daily Tx on 12/2/09.  35 sessions over 7+ weeks.

This is my first post - hoping to find others who are sharing the same journey.

webstertoo

I go tomorrow to check the computer inputs after simulation and tattoes done on the 17th and hope to start the following Monday.  30 sessions over 6 weeks. 

Jules824

Hi, I start Nov. 30th. 28 sessions for 6 weeks. So I will be joining you on the journey in this thread also.

LISAA401

Hello, count me in I am going for appt 11/30 to start 12/01. finished chemo last week thank goodness and ready to cross this finish line too. 6 weeks come on first of the year.!!!!!!Lisa

Erin_Tx

I go tomorrow (11/23) for simulation.  Estimated start next week and 33 sessions.  The sooner I start the sooner it ends.  Finished chemo 2 weeks ago.  Curious if the standard for marking is tattoo?  Guess I will find out tomorrow...  Ready for this "adventure" to be over!

Erin_Tx

I will start Dec 1 for 33 sessions.  No tattoos, just "permanant marker".  Yea! (I think)...

Jayne_in_UK

Hi, I would like to join this group. I had my scan and tattoos on 17th November, simulation was today and I will be starting treatment on 30th November. I am doing the shortened protocol and will only have 15 sessions over 3 weeks. I'm not looking forward to it at all, but I'm so pleased it will be over by Christmas. I guess we are all about ready for it to be over.

I hope you have all had a good Thanksgiving. Although I am a Brit and we don't really do Thanksgiving, I am extremely thankful for this forum and all the wonderful people here who have kept me sane (more or less!) this year.

mimi1964

Hi, I think I belong here as well! I am scheduled to see my RADS onc for the first time on 12/2/09 and will find out how many treatments I will have to have and then I'm sure start the entire RADS process in Dec. and finish up after the first of the year sometime.  I didn't have to have any chemo for that I am very thankful.  

I have a couple of questions for you ladies that have already started RADS... what exactly is the simulation you are talking about?  Did getting the tatts hurt?  How big are the tatts?  Are they very noticeable?  I am totally freaked out about having to get them.  Some people like tattoos and some don't ... I happen to not like them and really don't want them, but I guess I'm having no choice about it since the hospital where I live (there is only one locally does the tatts).  

Honestly any information about the RADS treatment would be helpful.  I am quite anxious over it.

Thanks

Renee

Jayne_in_UK

Hi Renee

At my first rads appointment I had a CT scan and also got my 3 very small tattoos. They did ask me if it was OK to do them, I think they should ask first but some people have said this does not always happen. Mine are really very tiny, about the size of a small freckle. If you didn't know I had them I am sure you wouldn't even notice. In my case there is one on each side of my body, sort of on the ribcage, and one slightly off-centre on my sternum. I could feel it when the needle went in, but I was prepared for it and it wasn't really painful. I was pleased to have the tattoos rather than marker pen that I would have had to keep dry, or tape over the marks, because tape irritates my skin.

My DH though is one of those people who doesn't like tattoos on anyone and he kept thinking of how I could avoid having them. Well he wasn't in the room when they asked me, so I just told them to go ahead. I showed DH later and he couldn't believe how small they are, not what he expected at all. I understand that it is possible to have tattoos removed by laser, so if DH had been horrified at the sight of me I would have agreed to get them removed later. At this same appointment the radiographers adjusted the ‘bed' I will lie on for my treatment and took various measurements to be sure I end up in the same position every time. They did their best to make sure I was as comfortable as possible. They did also draw on me a bit with marker pens, but they said to just let this come off in the shower.

My next appointment was the simulation. For this I was lying on the same type of ‘bed' but under a machine known as a simulator that is similar to the one that will deliver the radiotherapy.  The radiographers adjusted my position and checked measurements, then started the machine moving to the positions it will be in for the actual treatment. The machine created images that were used along with the images from the previous CT scan to plan my treatment. The radiographers then went to another room and checked images on a screen to make sure the right places would be targeted with the correct dose of radiation. I will be having 3 areas treated; this will vary from one person to another. The techs also drew on me a bit with marker pens but again they said to just shower this off. In my simulation it all matched up correctly so I wasn't in there as long as I expected.

I was quite anxious about rads too, but so far so good. I have met some women on this forum who have already completed their rads, so I think if they have got through it I am sure we will be able to. I hope your appointments go as smoothly as mine have so far.

mimi1964

Thanks Jayne for all of the information, you really explained things exceptionally well.  I truly appreciate it.  It seems this process is going to take me away from my job a little more initially than I had hoped it would to get everything set up, not to mention all the fatigue everyone has talked about that progressively becomes worse as RADS gets into the 2-4 weeks and doesn't start resolving until 2-4 weeks after you are finished.  It's gonna be hard for me since I am a Directors of Nursing in an Assisted Living and I am use to working long hours and them coming home and doing double duty with my granddaughter, cooking, cleaning, etc.  All the things we all do on a daily basis.  I will just have to explain to my family and hope and pray they understand and pick up the slack. 

Renee

Milena1

Could anyone out there tell their experience with the Contura (or MammoSite) balloon partial breast irradiation? I am a candidate for it and will have to decide between Contura and whole breast irradiation by Tuesday. Any info would be greatly appreciated. I'm wondering how painful it was, whether one can shower while the balloon is implanted, and what kind of fatague to expect. Any other info would be helpful, too. Many thanks!

Jules824

I already checked in the other day, But I wanted to say I hope everyone had a nice Thanksgiving weekend, if you celebrate. If not, I hope you are having a nice weekend. My husband and I have all our Christmas shopping finished and wrapped and our house is decorated, tree up etc. I am beat because Im fighting a bad back along with this, but I was determined not to let this stop me from enjoying my favorite time of year (Christmas!). My rads starts Monday and I admit Im getting very nervous about the side effects already. Take care for now and talk to you all soon!

Anonymous

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Jayne_in_UK

Renee I'm with you on this whole process causing us to lose more time off work than we would like. I teach at a college and they have been great, but I still can't believe the amount of time I have had off. My surgeon told me at the start that I need to put myself first and that means taking time off work, but I haven't found it easy. My DH has been brilliant at doing stuff at home when I have not been able to do it. I hope your family will do the same for you.

Milena I'm sorry I don't know anything about the Contura balloon partial irradiation. The only thing I can think to suggest is using the search facility to search this site using those words, to see if it has been discussed on here somewhere.

Jules you have done really well getting your Christmas shopping finished, wrapped and decorations up and all with a bad back. I still have a few presents left to buy, not many though. I have bought quite a few things online this year as I couldn't face too much looking round shops. Actually I have been feeling better and had more energy the past few days. I hope it lasts once I start rads.

Good luck to everyone starting their rads this coming week.

mimi1964

Hi all I was just wondering how those of you that started RADS this week did?  I got a call first thing this morning from the scheduler and she had to reschedule my time to see the RAD onc for the 3rd time... I'm beginning to wonder?  Anyway I still go on Weds but now I have to be there at 8:15 in the morning.  Yuck!!! nothing like being at the docs office first thing and having them look at your breasts (or I assume he will since ever other doc has).  Anyway I'm just so not excited... :=(   but this to shall pass and we will all come out survivors and hopefully without irritated breasts. 

Renee

Jayne_in_UK

I had my first session yesterday and it was slightly scary, but not too bad. They were running late because one of the machines was out of action so I had to wait quite a while to go in. I would have preferred to go straight in and get it over with.

As I was lying on the bed at one point, concentrating hard on keeping still, I realised I had forgotten to keep breathing! After that I concentrated on breathing in and out and I felt calmer. The actual treatment was over quickly, they also took some more pictures and will take more today. It is all to help them make sure they are targetting the correct bits so I don't mind at all.

I have to go to a hospital further away from home for my rads so with the journey there, waiting for my turn and then an accident had happened on the motorway coming back, it seemed to take most of the day. Oh well, 1 down 14 to go.

Renee yes that is early to have an appointment. I'll be thinking of you on Wednesday.

I hope all goes well for anyone else starting this week.

webstertoo

I had my first session yesterday and this morning I noticed the area around the nipple had already changed.  I was told that I shouldn't have any side affects so wonder what's going on.  Only 1 minute of radiation to two sides of breast with around five minutes of setup.  I'm only 15 minutes from the hospital so very lucky. 

Jayne_in_UK

Webstertoo I envy you the 15 minute journey to hospital :-) My return journey went faster today and I didn't have so long to wait for my turn so I'm not really complaining.

I can't comment about nipple changes because my rads side no longer has a nipple. I do have my breast skin over the T/E though and I haven't noticed any changes in it yet. I was looking out for it because I am a redhead with very fair sensitive skin that can sometimes react to the slightest thing. They gave me some aqueous cream today to put on so I'll hope for the best.

Jules824

Hi everyone, I hope you are all hanging in there. Try to remain calm as you can when you start (if you havent started yet) I stare at the pic above me and I think of Transformers when the machine goes around me. Then I think of Ghostbusters when the green rads (lasar?) light lights. Have to try to keep a sense of humor. So I thought of my kids and those movies to clear my mind.lol.

So anyway, I had 2 rads sessions so far. (I am supposed to get 28 total). The techs are all nice. Will see the doc tomorrow after my 3rd session. Everything is ok so far, but its early yet of course. I am fair skinned so I expect to burn. But mostly I am worried about my lung that they said will be exposed (partially).

Lastly... I asked about creams because I heard we should put them on ahead of time before we may burn but they said no, they will keep watch and if I need something then they will give it. I also asked about deoderant because I read on here no deoderants. They didnt really answer much, so I will use cornstarch (again read about on here).

 The only complaints I have are,(I can relate to Jayne!) the traffic going over is nerve racking! And....the other complaint I have is,.I find more out on here than from the doc so far! Yes it is early to get up each day (Mimi). Maybe going to bed earlier at night may work? I was used to staying up till 1 or 2 am and sleeping in (till now.lol).. (I dont work but my husband works nights so we used to stay up late)

Take care for now and keep the faith! We can get thru this! (If I miss answering anyone excuse me, my brain is more fried than anything right now..lol)..

Torona

I am new to the Dec. Rads group.  Just finished my 4 rounds of T/C on 11/16 and I'm scheduled for the Rads simulation trial on 12/9 with Rads tx to start on 12/10 for a total of 33.  I am like you, Jules, I am worried about the lung.  Because my tumor is very high upon my left chest (well above the breast) the rads onc said he would probably get the top of my lung but I wouldn't know it if he didn't tell me.  Well, he did and now I'm worried about long term effects.  I, too, am blonde (well, I used to be), light skinned and burn easily. I have had severe burns and allergic reactions at the IV sites where my chemo was given (didn't get port with only 4) so I'm already dealing with that. I have gained about 12 lbs. (they say from the steroids) and I want to start losing it, but didn't know if I could while getting radiation.  Anyone have good advice?  Hope to learn as much from this thread as I have all the others.  It's truly been a life saver for me.

mimi1964

Hi everyone!  I saw my RADS onc this a.m. and I really like him... he is young though!!  He told me that my surgeon only got 1mm clear margins (too close for comfort and I'm a little ticked that the surgeon didn't tell me it was so close and suggest going back in for a re-excision).  Anyway that means for me... I get to have a stronger dose of radiation than most women are prescribed and I get to have at least 38 txts (that's what he said... at least so there may be more)!!! I am pretty upset right now!!! I'm going back in about 30 mins (at 2:30 for my markers/tatts) and will start my radiation treatments the middle of next week.  He told me that they would prescribe/give me a cream to put on everyday after the treatments and to use cornstarch under the breast and underarm on the affected side several times a day.  He said the important thing is to keep it dry at all costs.  Also, he said not to wear a bra, but to layer t-shirts... O.K>  enough... I told him I work as a Director of nursing and I am in the public and I have to wear a bra to work.  He told me that they make Radiation bras I could check on or maybe a soft cotton sports bra.  But when I am home no BRA!!!  This is really going to suck donkeys.  Heck it already does!!!!!!! :=(   I have had several crying episodes today.  I am really, really, down!!!!

Renee

Linda_NJ

mimi - sorry to hear you are feeling down.  Hang in there!!  Everyone here keeps saying the same thing -- the key is to keep it dry.  My RADs nurses said to get a cotton t-shirt and cut it into small pieces, about the size of a washcloth.  Then you can fold these or roll them up and tuck them under your breast, or anywhere there is skin on skin, to keep it dry and prevent irritation.

Of course, then they gave me a Rx for a cream (biafine) and tell you to use Aquaphor (OTC by Eucerin) twice a day.  Might as well just be vaseline - don't know how that's going to stay dry??

jules - my RADs nurses said I could use any deodorant that didn't contain aluminum - they recommended Toms' of Maine.  Got it at CVS for 5 bucks.

milena - let us know if you chose whole breast or mammosite.  I was offered a clinical trail that was 50% mammosite and 50% whole breast, but I decline the trial and went whole breast.  I'm really curious about the mammosite, though.

Jules824

Hi everyone. Hows it going today? Im sorry for your news Mimi and that you are so upset. ((hugs)) Try to hang in there. This is very stressful. You dont need more health problems on top of this. I dont even know my margin. I still have to ask. All I know is the surgeon said (after surgery) that he got a clear margin.

Thanks for the info on deoderant Linda. I will look for that kind. In the meantime I bought corn starch..lol. I think I smell but my husband and the techs said no. Maybe its in my head cause I knew I didnt have deoderant on?

I had to skip rads today. The doc was only in this afternoon so the techs said they cant do it in the morning today. I cant go afternoons. So anyway I will be back at it tomorrow again. I did meet another rads doc (a man) who I like much better than the original rads doc. This guy was honest and told me side effects. Hopefully I wont get any of those side effects. I swear I feel a little dizzy at times at night. I dunno, maybe its my nerves. I will ask them tomorrow.

Take care for now,

((hugs to everyone))

Jules

Jayne_in_UK

Hi All. I have a couple of days off rads today and tomorrow because the machine is being serviced. I have been doing some housework, cleaning and sorting stuff out getting ready for Christmas. I have had 3 out of 15 sessions, so I'm one fifth done.

Jules I also thought we should put cream on ahead of time, then I was told by the techs that it won't stop any burning or other reaction. Mind you they gave me some cream and I have started to use it. I just think if my skin is moisturised it should be better able to withstand the treatment. If it gets dry it is more likely to react to the slightest thing.

Torona I was also concerned about my lungs and my heart, with my treatment being on the left side. I asked about it and was told that the radiation will not go close enough to affect them. Well I hope not.

Renee sorry you are feeling down. It's no wonder with all you are going through. I hope your marking up/tatts session went well. I was advised that if I start to burn I might prefer not to wear a bra, just loose layers of clothing. For now I am still in a bra when I go out, not always at home. Someone on another thread mentioned that they got a radiation camisole from tlc direct, it may be worth checking out. http://www.tlcdirect.org/products/sku-7593__dept-15.html

I have been told no deodorant at all on the treatment side. I thought I smelt while I was on chemo and for a while after, well I'm sure I did, but that armpit smells OK to me now and doesn't sweat any more. My DH says it is OK but I haven't had the nerve to ask the techs!

Well it's nearly the weekend; hope you all have a good Friday. Hugs.

Torona

Anyone read the articles that came out in the fall that drinking red wine before radiation may have less burning of skin?  I found an article on msn so I thought I'd send the link in case anyone is interested.  I plan on starting to drink a small glass before I start on Dec. 10. I was drinking a glass every day (for heart) before the bc diagnosis but haven't had any since I started chemo.  

http://www.msnbc.msn.com/id/32648681/ns/health-cancer/

Torona

 Tried copying the link again, since one above didn't work right.  Hope you can get to it.

http://www.msnbc.msn.com/id/32648681/ns/health-cancer/ 

Edit: if above link doesn't work just google " radiation treatment for breast cancer and wine" and you'll get several articles.  

Blessed123

Hi, this is my first time posting.  I start radiation tomorrow, I am scheduled for 33 treatments.   Really nervouse about side effects, esp. since I am still experiencing a lot of muscle weakness and swollen ankles from chemo even though I am 5 wks out.  I plan on going back to work next week and am nervous about the fatigue.

Linda_NJ

Hi Blessed - welcome to the Dec Rads group!  I'm nervous about fatigue too, but I'm told we don't have to worry about until week 2 or 3.  Keep your fingers crossed!!

tonja032

Hi everyone, I started Rad on 12/30/09, Mon - Fri for 33 days. 6 1/2 weeks. It is not as bad as I thought it would be. I'm there for 10 mins. everyday.

Diane48

Hello,

I met with the Radiology Oncologist today go in for the cat scan next week.

He said that I could have 30 treatments at the regular dose or 20 at a higher dose and that it was up to me which I did. I hate that because I do not know which one to do. Did anyone else get a choice?

Lisa1970

12/01 had the CT scan and they gave me the tattoo's at that point, didn't hurt at all. Wondering if any of your Rad's Dr. is starting you out with booster's? Mine is starting mon 12/07 with booster then 12/8-10 reg. rads & another booster on fri 12/11....Was told that it's the dr.'s preference and every dr. is different...