July 2011 rads

Lena I am with you on tattoos.  I don't like them at all.  I my radiologist does not do the tattoos.  I am fortunate to live less than 15 miles from where I have to drive. I wish I was not having to go through all this but since I do I want to get it over with.  Like Merilee says, "hugs to you and wishing you wellness". 

I like the "healing light" too. 

I would not have minded the little tattoos for the radiation.  I was marked with a marker  and then waterproof tabs were placed over the marks and told the tabs would not come off. 

I forgot to ask.

pollyagain: I am supposed to have 28 treatments but no mention of boosts. I will have to ask about that one.

colodisneylover: I was told no deodorant on the treated side. I had axillary dissection and don't sweat on that side anymore! I was also told no perfumes or lotions (except what they give you themselves).

I will actually be FINISHING rads on July 1, but with 5 left to go everything is still fresh in my mind so I thought I'd toss a few things out to those of you just starting...
1)  I've been nowhere NEAR as tired as I was on chemo.  This is truly a walk in the park by comparison - at least for me.
2)  I have very pale skin and got through all 25 whole breast rads without a problem.  I've also had 3 boosts so far (of 8).  Just turned a very light shade of pink right toward the end.  No burns, no itching, no pain. 
3)  I'm very claustrophobic and the two machines I've been on were not a problem for me at all.
4)  My rad onc at first said I'd have several tattoos, but when I voiced my opposition to that he immediately said he didn't like it, either, and that I should tell the techs when they did my mapping he said it was OK not to do it.  They drew Xs on me with marker and covered them with clear sticky circles.  I can shower with them with no problem.  They just replace them when they start to de-stick.  SPEAK UP if you don't want the permanent reminder of tattoos; there IS a work-around and it's an easy one.
5)  I live in south Florida and this time of year we have electrical storms almost daily.  The machines are very sensitive to them and can go down.  Mine went down for 2 days after I'd had only 2 treatments.  The staff came in on a Saturday so everyone could make up one of those days.  I did a double treatment one day to make up for the other.
6)  Speaking of doubles, I was scheduled to be done July 6 - the day I'm leaving town.  I asked if I could maybe double up two more days earlier in treatment so that I could finish on the 1st.  Not a problem!  They worked up my boost treatment plan so that, on two of the three days I did doubles, I had the whole breast in the morning and went back in the afternoon for the boost.  I was limited to a max of 1 double per week and I had no problems.
7)  Use lube from day one, every time you think about it.  Do not apply within 4 hours of treatment.  Take some with you so you can put it on after treatment before you get dressed.  I used Aquaphor at night, SunBurnt after treatment (homeopathic gel available at Walgreens), and Xclair cream during the day.  Xclair is for radiation dermatitis and is available by prescription, but my rad onc gave me a ton of sample packs. Avoid things with fragrance and alcohol.
8)  For itching, I'm told nothing beats plain old corn starch (although Xclair works, too).  Many baby powders have frangrance in them so be careful.  For an itchy or sore nipple, I was told to cut up a soft cotton t-shirt into circles and put a layer or two of that between my skin and bra.
9)  I was NOT told to avoid shaving or deodorant - but I did anyway.  I was told to limit pool time to just a few minutes and to dry off and apply lube liberally immediately after.  Also told not to expose the area to sun and to use a good sunblock (even under clothing) if I was going outside for any length of time.  The sun is strong here!
10)  I have saline implants.  Treatment was designed using a machine that could shoot around the implant.  I have to do stretches and move the implant around a few times a day to reduce the chance of capsular constriction - just like when I had them put in several years ago.  I'm told there is an excellent chance that if I keep that up for 6-12 months I won't have any implant-related problems.
11)  An interesting side note... My rad onc said that in many (most) countries where there is socialized medicine, patients are given multiple rad treatments a day to get them through it as fast as possible even though the side effects from such expedited treatments can be severe for the patient.  Studies have shown, though, that stringing the treatments out like we do in the US works just as well AND with far fewer side effects.

I realize that my experience may not be like yours, and that having to drag yourself in for daily treatments is a pain in the rear no matter how well they go, but you'll be surprised at how fast the time goes.  Don't be afraid of the rads... the benefits outweigh the negatives, and it IS possible to breeze through the whole thing without trouble.  I'm proof of that!

Sunmuffin thank you so much for your post.  I appreciate your encouragement and information too. 

Count me in.  I had my last Chemo 062311 and go first visit with RO July 7

Merilee-  I had the AC x4 and Tx4.

MaryMeg- I to was a January start for chemo but just discovered these boards.  I read through the January 2011 chemo group and applaud all of you who went through Chemo with young children.  I don't know how you do it.  My chemo was supposed to be dose dense and finished mid May but my body had other plans and I was slowed down by low WBC and HBG but got to the finish line just after you.  Here's hoping Rad's will be easier.

Lifting my glass to everyone in this group.  May we all come out the other side without any skin, heart or lung problems.

I had my first treatment today but thought I would join this group too since most of my treatments will be in July.

One down, 30 to go!!

I thought I was doing great dealing with having to have the radiation treatments but yesterday it hit me and I got all emotional and had some crying jags. My poor husband was so wonderful. He called into work this morning and told them he would be late so that he could go with me to my first treatment. Definitely made it easier though I know he can't do it everyday.

Thank you for the great list GmaFoley...that will be a big help. I had lost 11 pounds this spring before my diagnosis but I have gained a few back this past month...stress eating, I suppose. I guess I'll have to be careful through radiation though no one told me at the RO's office that I shouldn't lose weight.

I hope all of you ladies have a blessed day!

I'd like to join you ladies since I start my treatments tomorrow so most of my treatments will be in July.

It's interesting to me how so many of us are really dreading the rads portion of our treatments.  I did ok during chemo - 6 x TCH, duration of a year on Herceptin - but this rads thing really has me bent out of shape.  I HATE it.  My RO and I didn't really speak the same language at my consult or sim, so I have an appt to see him tomorrow before I have my first treatment.

Secondly, I'm very modest.  Yeah, I know that sounds crazy after all we've been through but I hate the thought of being half naked every day in front of people. 

And I a huge pain wimp.  *sigh*  And being deep friend everyday just sounds painful. *smile*

I had lumpectomy - the path report said my tumor was officially sized at 0.5cm.  Actually, the IDC portion of my cancer was removed during my biopsy.  No IDC remained for the surgery - but there was DCIS and ADH. 

I'm 35 years old, the wife of a wonderful man who has been so amazing to me through this whole experience.  We've been married for almost 17 years.  I'm the stay at home mother to 4 kids (14, 11, and 7 year old twins).  We lost a daughter after a household drowning accident in 2003.  

i'm looking forward to settling in and getting through this part of treatment with you all! 

Pejkug3 and Merilee:  Thank you for understanding and validating how I feel.  It means the world to me.  I hope we will all do well with radiation.  

Merilee:  I hope you are feeling better today after chemo.

Sending hugs to everyone. 

Elizabeth1889....I'm thinking of you today and hoping that your simulation goes well. That wasn't bad for me.

I understand how you're feeling...I thought I had been doing so well and that I could handle the radiation and then on Sunday, the day before my first treatment, I just fell apart crying. I cried for several hours and got emotional every time I thought about it. My poor family...

I'm on day 3 of treatment and doing much better emotionally.

Rads 1/33 = DONE!

Heading for 2/33 in a few minutes...

Yesterday was just stressful. I don't know why I'm having such a visceral response to this part of my treatment. I've been cut and poisoned for 18 weeks and went through that ok. But this burning
portion of treatment really ticks me off.

Maybe because I have to be 1/2 naked in front of strangers everyday until August 19th.

Maybe it's because I have to go to the doctor everyday between now and August.

Maybe I'm just tired of this. It started on January 5th and I'm ready to be done with
it. (Am I ever really done though?)

Maybe the thought of burning my skin on purpose is just hard to absorb.

None of those are helped by an office staff that won't give me a schedule because I "don't have a job". So they want to tell me today when I should come in tomorrow making it impossible to schedule anything ahead of time. One day I'm to be there at 2pm, the next at 8:45am, the
next at 3:30pm, etc. Plus, I have other appts at the hospital to work around so I could be out to the hospital 3 different times next Friday. All because I "don't have a job" and should be more flexible.

(Part of the issue there is that I am by FAR the youngest person I have seen in the cancer center. The older people are retired and much older and don't have to work around family and
4 kids. My plan is to tell them that I'm going back to "work" so I'll need a standing appt. time)

So yesterday, they had me strip off my top and bra with 4 techs in the room...um, oookkkkk. No privacy at all, I guess. The simulation was suppoed to take 30 minutes. They ran the machine and it marks my fields. I have seven fields. The fields fit together like a puzzle and cover from the middle of my chest, all the way to the back of my ribcage from my collarbone to 2 inches below the bra line. Then the proceed to draw all over my chest with black sharpie to mark the fields for the radiation oncologist (RO) to approve. He comes in to look and says, "No, I want the isocenter over here". So all the markings get wiped off and the start over. He approves that plan and they zap me for the first time.

I was getting dressed - in front of everyone - to leave and they tell me, "Oh, no. You can't wear a bra until you're all through with radiation and your skin recovers." I had to argue to wear my bra out of the hospital! Plus, I was supposed to leave the black markings that went clear up my NECK on until tomorrow when they'll do more tattoos. (I had three tattoos done last week and I thought that was it - guess not.) Well, I can tell you that most of the black sharpie marks are gone just from clothing rubbing on them and sweating. But for $906 - they can mark them again.

The RO was great. He sat with me and went through all the technical parts of my plan. Initially, he wasn't sure I would be able to do radiation because he believed my heart would be in the way. He thought he would be hitting 27% of my heart, but my heart is positioned a bit differently than he thought it would be. He's only hitting 2% of it with this plan. But he's getting more of my lung (18%) so I should anticipate some pleurisy issues, a cough and fluid on my lung that will resolve once radiation is done. I figure that people live with one lung so I should be just fine.

I guess I like the doctor, but I don't like the staff.

And my appt should have been 30 minutes lying in a hard plastic form, with your arm over your head and your neck turned to one side, unable to move. And it was 75 minutes.

Just crabby.

But better today. Today shouldn't be so long. And I may request privacy to change clothes. I know, I know - after all this time, I shouldn't care. But I do. Even at the GYN then give you privacy to get changed and settled. Not here though...

Ugh. I'm sorry for whining. I guess I'm just weary. I kept remining myself yesterday that as frustrating as this experience is - it's better than cancer. I'd really like to be alive when my kids become adults and have their own lives. And this inconvenience is worth it to get me to that point.

I'm sure I'll settle into a routine and this will be ok. But I have such strong pre-appt.anxiety.
Radiation goes until August 19th - and the kids start school on August 22nd.  I'd like a semi set schedule so I can plan to do some things with my kids, you know?