Summer Rads 2014

Sunshineinky

Jhondro I bought Bali bras! I am not sure I ever wore a bra without a underwire and I love these.  

I'm using my cheap bestform Walmart bras until rads is over though! They're atleast 2 sizes to big going around but they feel great!

Have a great Monday everyone!

Cannoli1

Sunshineink,

I have 27 total. 23 of the radiation I am getting now, and, then 4 boosts. This afternoon's radiation marks number 14, so at least after today I am just a little over half way there. The redness that started on my left breast Friday has turned tanner, but I am worried it will start acting up again now that a new week of radiation is here. I cannot wait until all of this is over with. I want so badly not to feel like a "patient" anymore.

jbokland

cannoli- I hear you sister ! I am on the little break between chemo and rad.  Sometimes I feel elated to be half through everything but then sometimes I sigh heavily I still have 6.5 weeks of rads. THEN reconstruction surgery at the end of the year!   It's a full year of this !

Lisaj514

at my RO appt today after radiation I asked my dr on why my rad schedule has 34 treatments when initially was told 33 and I asked how many boosts. It sounds like its a guess sometimes. He said they factor in the size of tumor, margins (how big or small), grade etc and it can be 32 or up to 36 or even more!! And I see, cannoli, you have 27 total and 4 boosts. And the boost could be 5 or up to 9 he said. All docs do it different...that doesn't seem right to me. Seems like there should be more of a standard. But they do follow the current research he said. Well my cancer was small (less than 1cm) but grade 3, margins 3mm at invasive part and 5mm at DCIS ( I actually did t realize that I had both, thought the DCIS dx changed to IDC after surgery) and TN. It's all factored in at the sim. maybe there's a formula but it's still flexible...I guess I like specificis and want to hear the rationale. He also said we will see how the skin is holding up and can start the boosts  a little sooner. The more rationale they give me the more confusing it gets. I just say...how can so much be going on in this little boob...and mine is little...and smaller now since the lumpectomy, barely B cup now :-(. Well plugging along...14 whole breast left ( or 13) and 9 boosts ( or 8 or whatever they decide at the time?). I hate not having the control I guess

Cannoli1

jbokland,

Yeah...a full year...for me too! I will probably have my tissue expanders replaced in January or February. My PS wants to wait 6 months until after radiation. I wish I could talk her into sooner, but, I don't want to be down and out for the holidays either. I am going to try to have as normal of holidays as possible this year.

 

Cannoli1

Lisaj514,

You must have been reading my mind. I was thinking the same thing between the differences in the number of radiation sessions we have. My cancer was Stage 3a, 4cm, with 7 positive nodes, but, I have fewer radiation sessions than you. The only thing I can think of is the dose may be more for some than for others. I am radiated in a total of 4 places. I just came back from today's radiation.....13 left and counting. Staying positive that this beast will NEVER come back.

jbokland

Cannoli- you and I have very similar dx and sizes.  I am in for  33 treatments. 

              BTW,  how was your ILC detected...its a slippery one to find!

 

Crazywabbit

Officially over the halfway point today, 17 down and 16 to go. Some of the difference in the number of treatments may be due to mastectomy vs lumpectomy and LNs involved.  I get 1.8 greys each rx. For a total of 60 grey at the end.  I do notice that the number of seconds, yes I have counted 1- 1,000 and it seems to vary sometimes. The techs say the same total dose is delivered but sometimes slower or faster.  I think I am getting the maximum area radiated. Covering supra clavicular, internal mammary and axillary nodes as well as the whole breast.  At least I do not get any bolus treatments.   

JB another brave woman with a beautiful photo.

I am feeling like one of the few Stage 3, esp ILC, women who have not had a mastectomy.  Starting to get a bit paranoid about it. 

Rosiesride

hey girls...had my first rad today...I am in for 36...my ILC was multifocal tumors...3 under 1 cm... I had 3/11 positive nodes...thought I would get 33 but then I was told 36... Upper clavical and whole breast with some boosts...it's gonna be a long ride!!  I guess it's like our job now...I stuck with my lumpectomy...ready to get on with my life, like all of us! Rosie

jhodro

And Lisaj, your Dx is similar to mine, and last I heard, I was 33 treatments, but that discussion was also pre-chemo. 

I'm starting with sim on 7/30 (assuming chemo goes as planned) and then my first treatment looks like it will be 8/7, but it's still a little way off. It's very difficult to leave everything up to someone else. Even if they are supposedly the experts. 

Best of luck for SE free rads treatment for you!! (And everyone!!)

Cannoli1

jbokland,

I actually think they missed it the first time. I went for diagnostic mammograms AND ultrasounds every 6 months because I had fibroadenomas. When I went in June of 2013, everything came up "no significant changes; short term follow up visit," which was my every 6 months. Then, I went in January 2014. My exam was very early in the morning, so I went to work afterward. When I saw my doctor's number coming up on my cell phone that same afternoon, I knew this was not a good sign. She said that they had found an "area of concern" and sent me to my breast surgeon for a biopsy, and, well, you know the rest of the story. My breast surgeon said there was no way that was not there when I went in June. Sad thing is, it probably was a much lower stage back then.

 

jbokland

I have cat 4 (very dense ) breast so I always impatiently sit through mammos and ultrasounds every year. I was living in Australia and notice my breast had a firmer feel on the left. It was time for the annual so I went   3 ultrasounds over 2 days showed nothing.  I was told it was hormonal changes, cut back on caffeine, etc. 7 weeks later it was larger and I went back.  This time a bx was done and confirmed ILC.  They good news is grade 2 is fairly slow growing. The 7 weeks wouldn't make a big difference.  I probably was brewing this a year.  

ktfelder

Hi all! Today will mark (I think) my half-way point. Like Lisa, I'm not entirely clear about the exact number. I think 28 full and 5 boosts. My skin has held up really well. Some blotchy brown (tan) areas are appearing, but skin is intact. However, last week Thursday, exhaustion set in. I am just dragging, and to top it off, I am recently having trouble sleeping. I have had problems with insomnia since menopause, and this is making it worse. Similar to Sunshineinky's experience, I have been having some strange tingling in the radiated area. But last night it turned into shooting pains - nothing awful, just enough to ensure I did not sleep well. I don't like taking medication, but think I will ask for a light sleeping pill. I can't afford to have my sleep interrupted when I'm suffering from radiation-induced exhaustion. 

I am dutifully following my doctor's instructions regarding treating the affected area. Putting on Aquaderm every night, nothing else. Here are my simple tips that have made this disgusting petroleum more tolerable: I purchased exam gloves and put them on before applying the Aquaderm. Since it is waterproof, it is a pain to wash off hands. The gloves make application much easier and clean-up faster. I also purchased a 6-pack of cheap crew neck t-shirts at Target to wear at night. I wear one for a week, then throw it away. That way I don't have to worry about staining my sheets or nightgowns. 

Wishing all of my radiation sisters the best as we go through this. Looking forward to the next challenge - hormone therapy!

Sunshineinky

Kt you were diagnosed on my 20th anniversary which is just 3 days before me! I only like 3 whole breast and 8 boost.  I'm really hoping to get through it without a break.  My RO offered me one yesterday because of my sudden under breast skin breakdown. I do have silvadene now snd that's seemed to help. She left taking a break up to me and my mind says keep going!! Get it over with!! So I'm not sure what I'll do.  My appointment is at 2:00pm.  

Cannoli1

jbokland,

Do you take anything for stress? I have to rely on Xanax every day to calm my nerves. I actually do cut one ;pill in half though, and take 4 halves a day.

I am going back to work tomorrow in the office, after 4 months away (3 of those months I worked part-time from home), and I am very nervous. I just hope I do not have bad burning from radiation to make working uncomfortable since I still have 13 treatments left. This morning was the first time I actually felt sunburn from radiation. My left breast is red, but I really feel it in my underarm area, and my tissue expander felt very, very tight on my chest last night. I am also nervous about the difference in my appearance. My co-workers have not seen me in my wig yet. My hair has started to grow back in, but it will still be a while before I can sport a short hair style.

 

 

Cannoli1

Sunshineink,

Are you working while going through radiation? As I mentioned, I am going back to work in the office tomorrow and am very nervous.

 

Cannoli1

ktfelder,

Thanks for the idea about buying the cheap t-shirts from Target.....think I'll take you up on that. I am just using 100% aloe vera gel at the moment on my skin. But, I think I'll have to move to Aquaphor soon since my skin is starting to turn red, which I know is much messier.

Curlyq1974

I need to vent... so here goes... I just started radiation therapy.  I have had 5 sessions.  Of those 5 sessions, only once have I been seen at my scheduled time.  And I am talking about waiting for an hour, hour and a half.  Then yesterday I just about lost it.  For whatever reason, they decided that the 5th session was when I needed a bolus.  You would think that I am the very first breast cancer patient they have ever treated.  A flat piece of rubber will not conform to a round mound known as my breast.  After trying and trying, they told me we had to go to another room.  So off to another room to try and get the bolus to lay flat against my chest.  No such luck.  So then they used this molded plastic stuff but as soon as I moved, it created bubbles and wouldn't work either.  We are talking hours of trying to make this work.  Hours with my arms above my head.  Everyone in the department trying to get a flat piece of rubber to fit my breast.  I was so frustrated!  Finally after 2 hours they decided to use wet towels.  Ummmm WHAT!!!  You couldn't of done that 2 hours ago???  Total time for yesterday's appointment... 3:45!!!!  And the wet towel deal stinks... the towels start off warm and it feels nice... then after about 2 minutes it starts to get cold... really cold and by the time I was able to get off the table and change I was frozen.  Thank goodness it isn't winter!!!  Hopefully today's appointment will be smooth and go off without a hitch. Grrr....  Thank you for listening!  I just needed to get that out!

jhodro

Cannoli: I just returned to work last week. I will be working from home a couple days a week and in the office as I can. I haven't finished chemo yet, still have 3 treatments. Then Rads. My co-workers saw me for an event in a scarf two days after I lost all my hair - everyone was cool about it, not bad. Then going back last week, I wear my wig, everyone says it looks very natural. I want to rip it off by the end of the day. It's a little brutal (hot!), I have to admit. I have been able to leave early most days to take a nap, so that has been ok. I am getting a little nervous too about how I'm going to handle the workload with all this stuff going on. The best advice I got: take it one day, one treatment at a time. That's my plan. One treatment at a time. It's hard though, because I'm usually a planner and know what I'm doing from week to week. With all of this medical stuff, that is impossible. Best of luck to you!!

Sorry, Curlyq!! I think I'd demand to see someone in charge. You have to be your own advocate. So many of these medical people are just doing the minimum required of them, and forget that you are a human being. Holding your hands over your head for that length of time is hard if you are completely healthy. Let alone in our situation. Good luck on your next treatments, I hope they go better!! 

ktfelder

Sunshine - I have followed your posts as we have much in common - dates, treatment... You are a couple weeks ahead of me in radiation so I have followed your progress with interest - and you are so cheerful! 

Canolli - So glad I could help someone. I have received so many helpful tips (and support!) on these boards.

Curleyq - You poor thing. How awful! I struggle with keeping my hands over my head for the 20 minutes I am in the scanner. I have to take ibuprofen every day before I go in just to make it possible. My arms and fingers go from burning to freezing to numb every time. By the time they tell me I can move them, I can barely lift them. I cannot even imagine what you went through. 

My radiation facility is like a factory. I think we are all scheduled 20 minutes apart as the technicians are always in a rush. But they do keep to a very tight schedule. They are rarely 5 minutes late. Unlike many who have posted on this site, I haven't really warmed up to any of them. There is one person who is typically there, then the 2nd person rotates almost every day. I think about 7 to 10 people rotate. I always feel like they are in a rush. They are nice, but no time for small talk. 

I suggest going in early today and asking to speak to a supervisor. What you went through is terrible. Also, ask for a blanket during treatment. My facility offers them as the room is often cold.

optimi

I just joined this thread as I will be undergoing radiation in about 5 wks and I am sure there is a lot of info on here to prepare for the long 5.5wks of radiation. 

I have chemo and surgery behind me and with that I am hoping the worst part of treatment is over. Just like a few ladies have commented above, it is going to be a year by the time all treatment is done for me too. 

I am about to make the radiation appointments. I have the choice of going to CPMC or UCSF in San Francisco for treatment. Is there anybody on here who has been to either one for the treatment and could recommend a RO? I am not sure whether there is different techniques different ROs use or whether it is all the same treatment. My main concern is breast shrinkage which apparently will happen few months post radiation. Is there any way to prevent or minimize that effect?

aff

I went to a "school's out" party with my kids the other night. It felt great to be out. I am 2 weeks and 4 days post umx w/DIEP reconstruction. I ran into an old friend. She asked me how happy I was to be done. I looked at her a bit confused & responded that I wasn't done and still have radiation ahead of me. Her response was that "radiation is nothing" and that I must be so happy to be able to put this behind me. I was going to attempt to explain to her that I'm not yet able to put this behind me but I just nodded yes, gave her a hug and knew that she could never understand.

I know she was not trying to be insensitive. I just wish that people would think before they speak. 

Sunshineinky

Aff unless your friend has had radiation they have NO idea the mental and physical torture that daily rads can bring about.  

Kt thank you, I try to be cheerful! It's so hard right now but I'm holding it together.  I just pray my skin doesn't get any worse. I went on to radiation today even though they offered me the break.  I just need to get it over.  

Cannoli I actually retired in nov 2013, I was lucky to work for the state and left at 44! I will return to work when this is treatment stuff is over and I'm currently in school full time.  I've not decided what I want to be when I grow up but hopefully I'll have plenty of time to figure it out! 

Crazywabbit

Curleyq we have blankets also, WARMED BLANKETS even.  I have rarely waited more then 15 minutes. Once about a 45 minutes but they has a hospital pt that interrupted their schedule.  Today I came about 10 min early, as I usually do, and as soon as I scanned my card the tech was out for me. I did not even have time to drink a glass of water I poured. 

Anyone getting throat soreness from the SC RT. My esophagus in the lower neck area, on the side where the RT is, feels tight and sore. Just came home from Rads and started feeling it.  Feels like a sore throat when you are getting sick but just on one side.

Sunshineinky

Barbara early on during rads maybe week two, I had a sore throat similar to what you described.  I started turning my head as far as I could and it went away after about a week.  

Curlyq I've never waited past my 2:00 pm time.  My therapist are fantastic and I feel like I'm very cared for.  They also have all been doing this for atleast 13 years and have always worked together.  There is always two of them in the room to set me up and I'm on and off the table in 5 minutes.  I do hope it gets better for you!!

Cannoli1

Sunshineink, you sound like me. I did not walk into a college until I was 42 years old, and, at the age of 46, graduated with a bachelor's degree in accounting.

On another subject. My hair has started growing back in....thank goodness. I'm not sure what kind of shampoo/conditioner to use now. I don't want to use anything too harsh. Any suggestions?

rettemich

Sunshine, you are a better person than I. I don't know if I could have continued, without a small break, just to allow it to heal a little. But good thing, we should still end on same day.

Curleyq: I don't blame you for being upset. That was ridiculous. That is not good to be left with your arm like that. I would find out who the supervisor, head nurse, whoever and talk with them. I sure hope your treatments go a lot smoother from here on. 

optimi, Check their websites. You should be able to find out the RO's they have on staff, the type of equipment they use. If you have the luck to have options Use them, check them both out, see if you can get a tour of each. Then see which one is the best fit for you. 

My PS said that there is really no way to keep it from shrinking. If it's going to happen then it will. But, he also said Massage, massage, massage, even after the rads are done. As it could take a few months for it to set in it can help keep the tissues more pliable. I told my hubby that was his job.

Crazyrabbit: Yikes, that sounds awful. I have had real dry, but so far no soreness. Let your Dr. or nurse know. I have tried to count too. My RO said everyone does. But they vary due to current and what you said. but the total is still the same.

And for those of you that have read my plight on the boosts compression, Great News met with my RO today and she said she may have another way without having to be compressed. Now That put a smile on my face. She said that the plastic surgeon did a great job of identifying the bed she think she can still get to it with the electron beam. Even she said the compression was too much. (I guess the tech talked with her and told her what happened) Don't know what she has in mind but she will be there for the first boost.

                                                     ALSO.  .  .

I need to apologize to everyone for being such a Debbie Downer. I had no trouble with any of the other procedures or handling health issues I usually go head on. The rads have been my demon. It goes against every fiber of my being. My friends and family, with the excepting of a few, guilted me into this so I fell it was never My decision. Nothing about this stupid disease is choice, I know that. And those of you who also went or are going or will be going through chemo, I completely commend you all. You truly are the Warriors. I don't know if I could ever be as brave, or strong. 

I wish I could hug each and every one of you. Very gently...

 

Sunshineinky

Csnnoli it's exciting to be going to college! I love my classes and can't wait till they start back! On the hair issue, I would ask my hairdresser what they suggest. I'm sure there are some very gentle formulas.  I'd be tempted to use baby shampoo.  

Rett, we are almost there and I just keep telling myself only two more whole breast! 

I am so glad they may have found a way around that torture device they were using with your boost lol. Your initial description caused me panic! It's a happy Tuesday! 

jbokland

cannoli- I went to my office for the first time last week to interview for a new position. I am without a position since I had to leave AU    I had 5 interviews and gave a presentation with my 5 o'clock shadow of a hair style.  It took balls and I'm proud I did it!   I could not get my false lashes on correct and had to go with just eyeliner!   Whattayagonnado?  

Amelia123

Wow - I just read about 7 pages and now I'm getting nervous about my Rad. I had no idea there was tattooing, or that the radiation was directed at other places than the breast.  Does everyone get tattoos? Are they really noticeable?

jbokland - you and I have basically the same diagnosis, treatment and timetable, just off by about a month. It's nice to know I'm not alone.