After Radiation
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Angelice welocome to the group, it is a great place for support and don't hesitate to ask questions.
Well the Celebrex is working for the hip pain, but I discovered last night that I really need to take it at the same time. Our town does a free concert series every friday night in June so DH and I went last night. We got home about 9:30 and sat outside and had some wine and then my hip starting hurting. I usually take the celebrex about 9pm so by the time I went inside and took it I was in pain and had to take a pain pill. But it all worked and I still sleep good last night. Learned I just need to keep to a better schedule. Why oh Why does rads have to do such strange things to our bodies.
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Sherry - Better yet, why don't our rad oncs warn us about this? It would seem the nerve damage and aches and pains are common. Do they think if they "educate" us we will turn down rads and they won't make as much money? I hate the thought of paying for someone's new car.
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Well well....here you all are! Question for you ladies...I am now 6 months out from radiation...my breast is still swollen but no longer the same size as it was last September...no idea what size I will end up...but my real question is this....does anyone else still have two different coloured breasts? It STILL looks like I was in the sun with only one breast exposed...the scar has healed beautifully and I no longer have hair under my left arm. There is a tightening of ths skin for sure ....like someone has pulled the muscle and pulled some up a bit (which I guess they have since they removed lymph nodes...) but I am moving it a lot to ensure there are no problems. I find the more I exercize, the better the pain, tightness and swelling is. This week I rowed, went to pump and did the arm bike thing two times and the swelling in my shoulder is much lower. Does anyone else find that exercize helps more?
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Sandee I still have a very nice tan look on my rads boob. My RO said it may take 9-12 months to get back to normal. I sure hope so because wearing anything strapless right now looks funny. My pec muscles is really tight. RO said this may take 2-3 years to get back to normal, but I am like you I stretch it all the time. I don't want it to contract and cause more problems. I don't have the swelling that I had before but still have some. Where my lump is the scar tissue is really large under there and has a bulge to it altho the scar has healed really nicely. But then I have a huge divet next to the lump scar where tissue was also removed. I think the reason the lump area has so much scar tissue that is bulging is because this was my second lump in this area and I already had lots of scar tissue before this bc showed up. It all just all looks really funny.
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Hey Sherry,
so sorry you are exeriencing the same things I am!!! but some how relieved that it is not onlyme, if you know what I mean...that this is a radiation 'normal' I have read that it can take time but knowing someone who is exeriencing the same thing takes the fear out. I read on another thread earlier this evening that the pain from the whole event also takes about a year and that regular bras can be worn again so I guess I will put pride away and will continue to just wear whatever is comfortable and stop worrying about what it looks like..has to be what it feels like.
thanks Sherry!!
night
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sherry: Did you have hip pain before you started rads? I've had millions of tests for mine since December, but the only thing they found was a synovial cyst that could possible have caused a labral tear. I wouldn't say it has gotten worse after rads because the pain initially was more intense (just pelvic muscle spasms), but it does seem to be concentrated in the hip joint more now (like a throbbing). I will be having a cortisone shot in my groin, but I am waiting after my European vacation to do it (don't want to end up with an infection in Europe. I've already had two bouts of breast cellulits since my re-excision). Until I get that injection, I won't know if it's a labral tear or just my decrepit back that has been giving me trouble for 20 years! Just tired of doctors and feel like I'm 82 instead of 42
. I finished rads last Tuesday, so I was hoping I could start riding my bike and getting in better shape now, but not sure whether I should be bike riding at this point. I've had multiple ultrasounds checking for ovarian cysts, multiple x-rays, ct scan of pelvis, Mri of pelvis. If it's a labral tear, I will be needing surgery. So don't want another dumb surgery .0 -
Susan I never had problems before rads. And this hip issue did not start until about three months post rads. Hope you figure out what is going on with yours and can get some relief. Your vacation sounds nice.
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thank you Sherry. I am looking forward to vacation and getitng away from doctors:) avoiding the sun will be tough but I am going to invest in some of those spf 50 shirts to help avoid it when I can't. My husband is French and his parents live in the south of France.
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Just got my mammo results back - B9 - BIRADS Score 2. I am so doing the happy dance. What a relief. Sure glad that is over.0
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Doing the Happy Dance with you Jo!!!!!!!!!!!!!!!!!!!!!
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ok sistas.i am catching up.been away to visit my SIL who was in a coma for 42 days.she is awake now and making slow progress.
CHEVY-deares sista-i wear a hot pink plastic bracelet that is ugly.Thank you Joyce for the info.i just called and ordered the silver one.
Gal Fri---my door is always open.come visit for a cuppa anytime.drag any one of my sistas with you if you can.ha
JO JO---doin the happy dance for you sista.its about time we had good news here.
Anyone who had node(s) removed should be wearing that bracelet and anyone who flys needs the sleeve.whats wrong with these drs?????my dr told me that in the very beg.
And i still have 2 different colored breasts and tightness under the arm.the exercise sure does help.stretching too.
and finally CHRVY---the swelling is goin down-yes princess kantalope is goin to graduate to a sports bra.perhaps the next step would be a purple reg.bra.
im glad to be back.i missed all you girls.im not stressin as much anymore.well im tryin anyway.im off the phone because my family is fighting,off facebook because i dont want to know anything but BCO...thanks my sistas for holding my hand.
and the beat goes on....huggggggggs kantalope
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I ordered one of those bracelets from the National Lyphedema Network on Saturday and it was shipped today. Should be here soon. Thanks Joyce for the information.
See Princess Kantalope I am getting good advice from your thread and actually paying attention to what others are telling me. I was not aware that lymphedema is going to be a concern for the rest of our lives - Sheesh! - don't we have enough to worry about? Sure missed you.
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i ordered my silver bracelet today and had it shipped to PA as im goin Fri.there for 2 weeeks.i too was not aware that lymphedema/edema was gonna be part of the big picture forever.SOME LUCKY PEOPLE DO NOT GET EITHER ONE.
yesterday i was outside and i put sunscreen and some kinda natural DEET-FREE BUZZ AWAY EXTREME-mosquitoes,black flies and ticks.4 hr protection.4 oz.$7.19.. reduced from $9.99.but it worked.Sunburn and bug bites can stir the lymphedema/edema.
this BC sure does suk...
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JO- WEEEEEHAAAA!!!
Granny- I too have two different coloured boobs.....hoping they are back to the same colour at somepoint down the road...otherwise, I will try to find a reason to revel in them! I put on sunscreen this weekend..first weekend of sun in 45 days....and endd up burning the left side of my face anyhow...guess I forgot to reapply it....and I was given a sleeve but forgot it when I flew to ottawa two weekends ago....did not remember until I was in the air...moved my arm a lot! The exercize does indeed help...rowing last thursday and the rowing machine at cardiac classes has helped immeasurably!!! less swelling when I move it. Tell me about this silver bracelet...I have a medic alert braceleet now sayin g' no BP and no Blood from left arm"...is it more specific than that?
Mamogram tomorrow afternoon...plan on being very busy until I leave the school at 1pm...and am bringing my mp3 player anf a brightly coloured scarf for the waiting room!!!
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Hi Ladies
I am responding to the concern about lymphodema. As soon as I began my radiation therapy; I got a bad case of lymphodema. I am not sure I can continue with radiation it's that distressing. I am stage 3 and would like to give myself a good chance; but still I cannot see allowing the accompanying pain and disablity from lymphodema after radiation. I spoke to the doctor today and he understood my hesitancy to continue radiation. So my question is; are there any of you out there who went thru radiation with a mastectomy and had lymphodema only later to recover from it? My doctor said there is no recovery at all and refered me to a lymphodema clinic. I am going to pass on the radiation, I feel I cannot risk disablity. Who among you has had any expierence with it who might be able to encourage me to continue?
Thanks ladies,
discouraged,
Marcia
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Sandee - Your Medic Alert Bracelet basically says the same thing and will work just as well. The only difference is the one everyone is ordering says "Lymphedema Alert" and the rest of what is on yours.
Marcia - Welcome - glad you found us but sorry we have to meet this way. I can't help you with the lymphedema - I have not experienced it. I know someone will come along with some help. I am sorry you are having to deal with it and hope you get some answers soon. Best of luck to you.
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thanks Jo!
Marcia- pm Marlegal....she has a ton of informatio on lymphodema and is very happy to share what she knows.
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Jo-did you get your results today? Been hoping for the best!
I went to see my surgeon for my 3 month check...I had DCIS , diagnosed in January with a lumpectomy and a re-excision and then radiation. It was 5 cm, grade 2. I won't see him again until January and will have my mammogram then. I was concerned because this is a year from my diagnosis and I thought that I would have one again 6 mos after my diagnosis? I am worried. Does this sound like a normal schedule?
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Marcia---there is also a wonderful thread I HATE LYMPHEDEMA...the sistas there are real experts.you should get all the ifo you need.help is out there.Im prayin you find it.God bless.hugggggggggggs Kantalope
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kathyob - I did get my results - they were B9. I am so doing the happy dance. My mammo was almost a year from diagnosis. My MO has said once a year for a mammo is enough. I'm okay with that schedule.0
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Question-----does the insurance pay for a yearly mamo??????from what i am hearing they only pay every other year...sure hope i got this wrong...0
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My insurance has been paying for mammograms every six months since my diagnosis a little more than 2 years ago. I have a high deductible and , even this year when I have not reached the point at which they start to pay their 80 %, they paid in full for my mammograms and the physician charges to read them. My insurance does cover one well patient exam a year and mammograms without regard to a deductible. Mine is a standard private policy with BC/BS.
Don't know if this is standard or not. Hope so!
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Granny - My insurance will pay for one "screening" mammo a year but if I need a "diagnostic" mammo they will also pay for that even if it is in the same year. Mine pays 80% until I ready my annual catastrophic cap then they pay 100%. I also have a secondary insurance that picks up the 20% once I meet my deductible on both.
I would recommend calling your insurance and see if they differentiate between a screening and a diagnostic mammo.
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It is my understanding that lymphedema does not go away. It can, however, be treated and be manageable. Best advice is to do all we can preventatively and try our best to not get it in the first place.
My surgeon and his nurse were very informative about all of this with me. Also, I attended a pre and post operative session at our Breast Health Centre where the Lymphedema Specialist gave a great presentation and handed out some amazing brochures and info. So much info and so many things to be concerned about.
Take good care and just breathe. . .
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It's been 5 1/2 months since I finished rad. Since about a month ago, my skin became itchy. I try to not scratch but sometimes find myself scratching. Has anyone experienced this months after done with rad?
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hi ladies thanks for the welcome .. im doing well nice to see your all doing well also getting good results .
Batoday im almost 4 months out of rads i get the itches to i want to scratch and scratch but hurts if i got to hard tender
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batoday: I am 4 months post rad and my areola itches something terrible. My husband even made up a blues song about it cuz I'm always scratching!!
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batoday--my started itching 3 months out. RO did not help much with it but went to the dematoligist and he gave me Kenalog 1%. He said that is typical and it is important not to scratch. He said it will come and go and just keep the cream on hand and use it as I need it. At first it took about a week to go away. Now I end up using it a couple of times a week as soon as I feel the itching coming on. Dermatoligist said I skin goes through so much during radiation and he does not understand why RO's are not more aggressive with stronger creams that work. He said OTC hydrocortosone that they tell us to use during rads is useless through it away. Go to a dematoligist and get something that will give you relief and you can get a yearly skin check while you are at it. I ended up having some skin spots they removed as well.
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Marcia, hugs and courage to you!
I'm so sorry for your distress!
You seem to have gotten a whole bunch of scary information about lymphedema from your medical team, but not enough of the full story to move you out of that initial panic we all feel. BY ALL MEANS do the rads. You need to hit the rotten breast cancer with everything you've got. Lymphedema is not a game-ender, it's just a bump in the road. I have lymphedema in my hands, and I'm typing this to you at a very fast pace. You can do this!
Let me back up a bit and see if I can make any better sense of the issue you're facing. First, yes, lymphedema is a chronic condition. BUT it is manageable, ESPECIALLY because you're catching it very early and will be seeing a lymphedema therapist pronto. S/he will do baseline measurements and then will begin a therapy -- while you're still in rads and healing from that, she'll only be able to do some maintenance steps, but once rads are over she can help you through therapy that will reduce the swelling and get you back on track. And she'll teach you how to do the self-care steps to keep it that way.
Lymphedema is a nasty side-effect, but it's NOWHERE NEAR as nasty as a cancer recurrence. You'll get your life back, and your job. And with all the proper cancer treatment, it will be a long and productive life that you can manage and enjoy.
Until you can see the therapist, here are things you can do that will help. Elevate your arm as much as possible -- on the back of the couch while you're watching TV, on pillows at night. Stay VERY WELL hydrated -- it helps dilute the lymph fluid and keep it flowing. Take deep abdominal breaths throughout the day -- it stimulates the largest lymph vessel in our bodies and helps pump the fluid. Take it easy on the arm, but no need to stop rads.
Take heart! You can do this! PM me if I can help, or come join us over on the Lymphedema board, where we'll all be more than happy to cheer you on through treatment and back to your life.
Gentle hugs,
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joycek - you are lucky. I live in Collierville, Tennessee which is a township outside Memphis and even though we dodged a bullet with the tornadoes a lot of other people did not. My brother and hsi company made a trip to Alabama to deliver supplies. We have friends in Mississippi who also got lucky but several towns were completely wiped out. I used to live in Louisiana and we had hurricanes there (before Katrina) and it was scary but nothing like a tornado. I am petrified of them. I heard that a mother shielded her 15 year old daughter in Massachusetts when it hit. The mom died but her daughter survived. That is love. The thing is you can do everything you are supposed to do when one hits and still not make it. What is with the weather? We have had tornadoes before but nothing like this year. I still see the image of that monster one over the University of Alabama. And Joplin? How gut wrenching is it for those people. And now one in Massachusetts? We have our troubles but I think about people who have lost everything like a number of people in Memphis and think I am whining...I should be ashamed. The flooding here is better but it has been really bad. I am on no 11 of 33 Rads treatments. Breast is a little brown but nothing major yet and the nurses are awesome. Diane
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