After Radiation
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Hi everyone; I will start rads in two weeks. Doctor makes it sound like a walk in the park. Let me know about some of your experiences with it. Am two weeks out from surgery; clear nodes and margins. Bless all of you. Great support system.
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Pam woohoo for finishing Rads.
Gail-uses lots of creams from whatever your RO approves. Mine gave me a script for Xclair and it was wonderful stuff, Expensive but my insurance covered it. I also used Aquafor and Aloe Vera gel at times. If you use Aloe Vera make sure you use a 100% without alcohol, fragrance or dies. Eats lots of protein as it will help with the healing. If you end up with the itching most RO's will have you use hydrocortison creams. Frankly I found that worthless. I ended up using a steriod cream that I had left over from poision Ivey and it was a life saver. After radiation I went to see my dermatologist and I was having a post radiation rash at that time and he gave me 1% Kenalog. He said in his opinion the over the counter hydrocortisons are worthless and he does not understand why RO's don't give better creams like Kenalog. So if you have a dermatologist or PCP that will give you a script I would ask for it and have it on hand, but ask for the cream not the ointment. Good Luck
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Thanks Sherryc!! I appreciate the information!
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I give a bigs thanks to Gina for sending me to her surgical group. I met with her Dr's partner yesterday and oh what a difference. I will not be going back to my previous BS surgeon. I could go on and on about this man but I won't but he did say that I still have alot of post radiation activity. He said I still have a lot of edema in my breast, and of course the pec muscle problem I have been having but taking PT for now and then my nerve damage on top of that. He said most people's SE will settle down in the first 3 to 4 months post rads but that about 30% will have long term effects. He said I fall into the long term effects since I finished late Jan 2011. I have 2 more weeks of PT, but he recommended that I do an additional 6 weeks if my insurance will cover it which I think they will. I asked him how much longer did he think I would continue having this swelling. He said another 3-6 months and whatever it is in 6 months would most likely never get better. He said the main reason why about 30% of women have long term effects is because there is an underlying immune system problem that is hard to identify because it really does not cause you problems in everyday life. That makes so much sense to me because I have always thought that my immune system was on the weak side. I catch virus easily and I have to be on daily meds for fever blisters or I will break out with fever blisters. Exercise and good nutrition help alot. Strangely enough I heal very fast after surgery so I assumed I would heal really quickly with rads as well but we all know rads does strange things to our bodies and we react differently. So at least I have a better understanding of what to expect for my healing. I also met withe PS and she gave me some different options that she things may work on me if we use Hyperbaric treatments before and after surgery. But she wants to wait until my rads completely settles so back to see both of them in Jan and since I was not wanting to do anything until mid to late march she felt by then I would be the best I was going to get with my rads and we can proceed from there. Felt much more at peace with all of this. It is amazing how Dr's can make you feel so unsettled. I did not realize that until I met with these doctors yesterday.
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Hi, I finished rads back in August (19th) and I seemed to recover my energy level very quickly, like within 10 days of finishing, but now I am back to feeling dizzy and sinking to the floor for no apparent reason. Has anyone else been through this, where the side effects seem to go away and later return? I am wondering if this is all related to the radiation or if something new has come up. I see my GP in 2 weeks anyway so I will ask him what he thinks, but am just curious. I also have had bad muscle pain in my right shoulder and chest and the right side of my neck (same side as the surgery and rads); I had to go to the ER 3 weeks ago (because I could not turn my head or swallow and there was chest pain involved so that's where I ended up) and I had xrays and an MRI but they could find nothing wrong so I am thinking that this too may be a post-rads thing.
Thanks,
Jeanne
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Jeanne I would recommend PT. My left side is my radiated side. At my 3 month followup with RO My left pec muscle was already hurting. I finished rads late Jan 2011. Four weeks ago I finally started PT and it has helped so much, I wish I had started sooner. My RO did tell me that rads messes with your pec muscle and bothers some more than others. My left neck muscles have also been bothering me and PT is working on those as well. Don't know about the other stuff but I would certainly follow up on it.
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Jeanne, Coincidentally I saw my surgeon this morning and he did say that you can feel some post surgical tweaks for up to a year! That's in addition to the rads pain that Sherry mentions. Anything more than a tweak is doctor worthy in my book!
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bgail - Doctors who saw rads is a walk in the park have not gone through it themselves. Most people do experience fatigue about halfway through and will continue for up to six months. I had a topical infection and had to get a script for Topicort which worked wonders for me. I did burn some and that went away fairly quickly. As you get closer and go for your simulation appt - there is a lot that happens that day and can be overwhelming. Ask lots of questions and don't let anyone rush you. There may be a thread for ladies starting rads in November. That is a real good source of information. I found one last year when I started and followed it for several months. What a life saver.
Please keep us posted on your progress.
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Welcome bgail - not often do I see another triple positive ILC girl on here. There is a forum for triple postiives that is great!
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just remember this is the last stop!!!!!!!!yeah who ever said rads are a walk in the park is nuts but its doablee right sistas???????we did it......and we have the most experienced sistas on this thread....we all had different S/E but we had them all...so to the newbees come often and ask away...
hugggggggggggs everyone.K
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Hi Walley,
I spent a day last week just bra shopping. I went to a lingerie store that does bra fittings etc. and told them my troubles. They very quickly found me two wonderful bras--both low cut so that I can return to all my clothes. I went to Walmart afterwards and was going to buy the Playtex, but since I already spent $80 on the two and the Playtex seemed pretty high cut, I didn't buy it. I may end up picking it up though for another bra to wear exercising under T-shirts and such. Plus, it didn't come in black which I was bummed about. So far my new bras are working out great for during the day. I've been switching over to my compressure bra at night though. It is definitely the most comfortable of all! Thanks for the advice, though, and it is good to know there is an inexpensive good bra out there.
Sherry-I am so glad you found some good docs who will address your problems and work with you. Glad that you are on the right track now!
Jeanne-I have the same pains-sometimes just in my boost area, other times into my shoulder, back, and neck. I do exercises now that were given to me by a lymphadema therapist and the compressure bra that I was prescibed has helped immensely. You might want to ask your RO about it, but know that it has happened to others so he should expect it when you tell him (or she-don't want to assume) Good Luck!
Gina- Wishing you well, too! Hope you're not in pain anymore!
Susan
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Is everyone gettin ready for Thanksgiving???????
We need a party....most of us last year at this time were either thinkin of the rads,doin them or worrying about them....come on...lets have a party.....where are you girls??????
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Hey Granny! I'm here, on off all meds so not falling over a sleep at 9 pm, not that that was a bad thing.....
Susan~you are way too sweet, and I am pain free for right now, and stopped the gabapentin, the three a day were doing a wild number on me, my blood pressure etc. Followed up with GP today, bp 120/70, back to my normal! Funny though, I stopped the meds to calm the nerve endings down and my boob hurts again, those shooting stabbing pains that make you say ouch out loud, but they are quick and done....swelling up again and now I see the pattern - extreme swelling in boob and radiated area right before period...so maybe I"m getting a period this month, we'll see!
Sherry~so glad you got the answers you were looking for. I can't say enough good things about this group!
Gail~good luck in rads, I got fatigued from day one. "They" say you don't, whoever they are, but my RO said yes it can happen that fast. Listen to your body and get a little extra rest during treatment if you can.
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Just now able to join this part of the BC ORG forums.\
Had my last Brachytherapy treatment last Friday and the RO removed the balloon. Much more comfortable now, except for some swelling.
Have appointment to see my BS tues. and hope he will be able to aspirate some of this fluid..
I want to wish everyone a HAPPY THANKSGIVING. We have a lot to be thankful for!!!!
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Congratulations on finishing rads Vicks1960! and welcome to the group!
We do have much to be grateful for....
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Welcome Vicks - How does the brachytherapy work, I don't know about it?0
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Omaz
The Brachytherapy involves having a Contura Balloon inserted into the space the tumor was removed from. In my case it was done with surgery, a couple of weeks after the original BS. There are several 'tails' protuding. After the surgeon implanted it, the following day I saw the RO and they use a CT scan to be sure it was positioned where it needed to be. They need to have a certain distance from the skin surface. (my RO was one of the DRs involved in developing this procedure). I went in each morning at 9:00, they would do a CT scan to be sure nothing had changed, then the Physicist would attach the machine that is used to inject the rads. Procedure took about 8 minutes, then he would disconnet it and the techs would put a dressing on. I would leave, returning at 3:00 to repeat the procedure. This went on for 5 days. After the final treatment (last Friday) the RO numbed the opening, deflated the balloon and removed it. Then dressed the wound. It is my understanding, that this procedure can be used on stage 1 BC (after partial mastectomy surgery). If you are given the option, I certainly would encourage you to do so...
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Thanks Vicks! That is interesting, I am glad they are coming up with new ways to do the radiation. I had the old standby, whole breast external beam radiation with boosts.0
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Brachytherapy sounds so much better than whole breast radiation.
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Gina--so, so glad that you are out of pain! well, except in your boob, but I think it is par for the course.
Brachiotherapy sounds great, but it has age restrictions and tumor size restrictions. I didn't qualify in either case--too young and tumor bed much too large, but for those with small areas, it is such a nice option.
Congrats Vicks on your finishing!!
Happy thanksgiving to all of you! I am offically on vacation form school. Had my final thrid presentation today...yippee!!! now to make some pies...
Sue
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I am here and I am "in" for the party. In Canada we have celebrated our Thanksgiving (in October) and so I wish to send only wonderful thoughts your way, my American friends. May this special day be filled with wonderment.
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Hi Everyone---been quite busy with Thankshiving comin and all the other stuff goin on......but im reading all the posts...The good the bad,and there is hardly anymore ugly....THANK GOD.
just wanna wish all my wonderful sistas a Happy Thanksgiving.....trying not to think about thiis time last year.....what a difference a year makes..
welcome newbees.remember this is the last stop.....
huggggggggggs everyone k
FIND A DAMN CURE/VACINE...ENUF!!!!!!!!!!
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Susan out of curiosity what is the age and tumor restriction?
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Granny~ One year ago today I was getting my 2nd round of chemo....I couldn't see the light at the end of the tunnel then....and I was bald, hairless really!
Congrats Vicks!
Susan~Yep, got a period....totally swollen....oh well, atleast it fills up my bra again!
Teklya~thanks for the well wishes. What traditions do you have for the holiday?
I'm off Wed for CT, my first since treatment, can't lie, so nervous......Results on Monday at 9:45 CT! But I"m off work from Wed to Monday, there's the silver lining!
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Gina have fun with a very long weekend. I have 2 Dr appts tomorrow and PT and Massage on Wed. The Massage starts my silver lining for the weekend. Have a Happy Thanksgiving.
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Gina---i yr.ago i swore i was not gonna do the rads.like i said what a difference a yr.makes.0
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Hey Sherry - I have my first real massage on Wednesday too!0
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Omaz I don't know what I would do without massages. My girl is really good and always makes me feel better. I hope you enjoy yours as much as I do.
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It's a new person. I used to get them but stopped about 6 years ago when my therapist moved out of state. I just want a relaxing massage.
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Gina-wishing you lots of luck and sending prayers out for you for your CT. Try to keep calm, but I know its easier said than done.
Sherry-The age restrictions are different depending on where you go. At my cancer hospital, it is 60+, but I think most places are 50+. They haven't finished research studies are people less than 50 yet, but I guess they are pretty condfident it will be fine for this age group as well. As far as tumor size, from what I can remember, 3 cm.?? But don't quote me. I know I was questionable since they did not know exactly the size of my DCIS since it was only a portion of the tissue they took out, but at 42, I was much too young.
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