Radiation recovery
Comments
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I know it has been a long time since I've checked in here. I am wondering if others have ongoing neck, shoulder, and back pain as a result of the shortening and toughening of the muscles after radiation?
It is now 13 months since I completed radiation.
I have regained my range of motion after months in occupational therapy, continue my stretches (or else), but these hideous episodes of neck, back, and shoulder pain are hard. I may be fine for 3 or so weeks, and then I have a week's worth. I now have pills and a team around me to manage the pain of it.
But there it is.
AND I feel very lucky and grateful to have been cancer free now for almost 18 months!
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Truebff, I would have gone ahead with radiation anyway, but I wish someone had warned me about a couple of things.
I finished rads last July, and in October, it was discovered that my thyroid was dead, dead, dead. It had to be a result of the radiation, even though they weren't radiating that high--I believe there was enough scatter to cause my thyroid to malfunction. Also, I'm currently in physical therapy to resolve my frozen shoulder, which must be related to the fact that roughly half my torso, front and back, is board-hard and apparently melted internally to my rib cage.
I'm aware that my radiation treatment was very extensive, given my Stage III diagnosis, but I better not hear anyone again say, "oh, rads is the easy part." Knowing what I know now, If I'd been given the choice between lumpectomy/rads or mastectomy/recon, I would have jumped on the mastectomy in a heartbeat. As it is, I had to have the whole paducah--lumpectomy, chemo, mastectomy, rads.
Oh, well. I would do it all again, just to kick cancer to the curb. See ya later, breast cancer...NOT!!!
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Sbelizabeth.....geeze, you got dealt a tough one! Sounds like you've formed extensive scar tissue or something from the rads. I sure hope the PT can do something about that. Is it also lymphedema? Hugs to you...you've got a wonderful spirit and I know that will help you persevere.....
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Wow I guess I am expecting too much too soon. I am only 2.5 months out. I had a hard time with rads also. I think some of it was my autoimmune disease and now I think it could be the thyroid. After my lumpectomy I was starting to get shaky and weak in my legs...especially the thighs. i seem hyperactive at times. Anyway the new endo wants to do some testing for a parathyroid tumor. Oh joy.
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Truebff, we have similar diagnoses, and a similar timeframe. Are you on an AI or Tamoxifen? I get pain too, upper back sometimes, but mostly bad around the lower back, hips and thighs. I'm hoping it's just the drugs, and that when they go the pain will go (eternal optimist?)
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truebff I have had exactly the same symptoms. I have had the neck pain consistently, and shoulder and back pain as well. I have also at times had rib pain on the radiated side. Lately the good times have been better, but then I will have a flare of the pain. I wake up every morning with a stiff shoulder and neck. I use Aspercreme, heat and cold packs and also I do much stretching and daily Qigong - even if it is just an abbreviated routine. On the other hand the radiated breast seems almost normal these days. Are you still dancing?
sbelizabeth my thyroid was knocked out too. I was hypothyroid going in, but when I finished rads, I had to work with my physician for several months to raise my dose to get my levels in a normal range. Going in they say they are targeting the radiation to a tee, but then how did our thyroid glands become affected?
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I expected to not have any energy after rads but this is over the top and worst than when I was doing rads. I am also very jittery, shaky and so many other problems. I am glad they are going to check my thyroid. It makes sense to me.
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I am so sorry for everyone who is still suffering after rads is done. Life can be very unfair sometimes. I have often thought that the SE's from chemo are overrated while the SE's from rads are underrated. Sending hugs to everyone.
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Hi friends, nice to see you truebff, so glad you are ca free. I am also since 8/11. I had bad shoulder joint pain during and after rads for awhile. It's gone now.
SAB, while I sit here watching the wind pick up and hearing the rains falling, and waiting for the afternoon ice then over 12 hours of snowfall, I am California dreaming. Love your photos! Long Island is "flat" but we do have two glacial moraines that provide hills as high as 400 ft. We have lots of preserves out on the eastern end and lots of hiking. I had planned to go hike to the bay to see the harbor seals (not common here) but it won't happen this week end...I think I need to un-bury the treadmill in the guest room.
I too thought of Janis last night...knowing that power could go out and I'd have no oven, I baked a small batch of cupcakes. It's all her fault!
We are expecting a foot of snow plus...and winds gusting to 50 or more. It will be dangerous this afternoonand evening so we're hunkering down.
Am worried about DD#2 in CT whose house was flooded during Sandy.
Stay warm everyone, and be safe! I hope the power's on later so I can check in.
Joan0 -
Hi All, justchecking in. Hope all the East Coasters are hunkering down. I also hope that the storm dies out quickly enough so we can have our fundraising dinner at school tomorrow night- I have made 500 meatballs for the crowd- hard to feed that many to the family, considering one of my two sons is a vegetarian:) I have to get out and back before the storm today, as it is my first screening mammo day, and I want to get it over with. I guess I will be happy this time if they let me leave without a core biopsy. Ativan city, here I come. The silver lining is that the whole thing should only take half as long as it used too....
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Hey Bunkie, hang in there- my energy is slowly coming back. Maybe our thyroids did take a zap- hmmmm... Could that be why I cant lose weight? It cant be Janis and her virtual cupcakes, because then I would only be hanging on to virtual fat!
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Stay safe Easties...watching the storm roll in on the news. DH just squeeked out of WI before the massive airline cancellations, and BF cancelled convention trip to NY.
Cowpower, to offset all of Janis' goodies maybe we can put up pictures of treadmills and get virtually skinny. Good luck with the mammo and the storm. I hope it does pass quickly, otherwise you are going to have to get creative with all those meatballs!
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Thanks for the good wishes to all of us in the northeast. I live in Massachusetts and the sonw is already falling at a good clip. The house is stocked with food (especially chocolate) and we have plenty of batteries and candles in case we lose power.
Cowpower, the first screening mammogram is scary. Wishing you good news and sending gentle hugs to you.
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Hi All! Thanks so much for the conversations around the neck and back shortening and pain issues. I thought I was all alone.
I also had what seemed like a dead or slowed thyroid after radiation. Most everyone in rad dept. were in denial over that, but the head nurse there saw it for herself (where I was burned) and called it scatter. My main doc wouldn't take blood tests because she said after rads it would just look bad, but to give it a year and see what would come back on its own. Well, as far as the thyroid, it really did come back for me. My energy is now at 80% too. But I no longer have ANY cushion (extra energy reserves past that point) so I can no longer "muscle through" (as we womens are so known to do) and have to be very respectful when enough output is enough or more sleep is needed. If I push it past what I can do, I may have a month or more recovering my energies again. So I need to stay aware of that.
I think I would have elected for radiation anyway. Becasue I got a LOT of very trusted opinions who advised me it was the best course. I also wish I had had clearer expecttions on the long and short term affects of it. I guess most doctors just don't want to scare you out of it. But, as most of us here know, they are or can be intense and difficult, and especially hard to understadn when they seem to just come out of nowhere and no pre-information.
But I said NO to tamaoxofen or AIs and went Chinese (Dim-Chrysin cream rubbed in daily - cream being better absorbed) as a natural AI with no side affects.
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Sab- virtual exercise is Brilliant! Thanks for all the well wishes for mammo- I was a tad wound up, but the radiologist I had last year when the stuff hit the fan recognized me and offered to read the results while I waited, so I got the all clear without a wait until next week. Feels wierd to actually pass a medical test.
Elizabeth, stay warm. I am just south of Albany, and it is beginning to pick up speed here. If the electricity goes out, we will live on cold meatballs!0 -
Cowpower - It is definitely Janis cupcakes. I caved. I had my boyfriend in Ca send me 8 pieces of gingerbread just out of the oven from Whole Foods...overnight and I froze them for my treats. We do not have one here and the one an hour from me does not make gingerbread. You know that is a craving. I gave up sugar BUT when I do get a craving at least it will be organic and what I want. At this rate that should last we about 8 weeks.
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truebff- That is good news about the thyroid. I go to see a new endocrinologist next Monday and see what he has to say about that and me getting off prednisone. Wish me luck. I hate that drug.
I have my first mammogram in 2 weeks. Scared of the pain. I still hurt. You are right....Valium here I come.
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Sbellizabeth - me too i am rock solid and it wakes me at night sometimes, i am never ever comfortable, hate how i feel p`hysically...........so i feel for you....
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When you are all finished with radiation, what tests (aside from mamogram) are other people getting? At U of M, they don't take any further tests at all, so far as I know, unless you have a side effect or symptom. I'd like to know what others are being told are routine during and after radiaiton tests. (During radiation, I heard some people got blood tests, but I didn't have any other tests then either.)
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Truebff, no tests other than my mammos, although I had to have mammo and ultrasound routinely for the first several as I developed new lumps.....turned out ok but really scary to begin with! I do get thyroid tests yearly but I've been on thyroid supplements for 30 years. I expect my thyroid was low after rads, but we didn't check it for 8 months.
Gals, it sounds as though everyone is improving, albeit slowly in some cases. It will get better. For about a year after rads I felt more like truebff....great and able to do things for several weeks, then a relapse and no energy at all. It came back quicker each time, but sort of left me at ground zero as far as walking or hiking. Well...for the past month ivebeen able to exercise daily, and have even increased the intensity and length of my routines to just about pre-cancer levels with no ill affects. So.....I'm hoping the same for you!
Cowpower. I'm still giggling about your mammo taking half the time. There's a thread here called "you know you're a cancer patient when". And you really need to post that saying. It's just the thing! Hope you're hunkered down with a good knitting project.
Bunkie I was scared beyond belief for my first mammo (I also hurt lots and had developed new painful lumps in my cancer breast) and I kid you not....it was the easiest mammo I've ever had. Apparently those techs know how to avoid pain when needed. I no longer even take ativan when I have to go. Oh, and Bunkie, ginger has good anti cancer properties, although I'm not sure we're supposed to be eating it in cookies, lol.
Take care all you eastern gals, and Janis, we're thinking of you fondly....0 -
Mostlysew, I went to a new knitting store yestetday, so I am all set up for the storm. I will check out the " know you are a cancer patient" thread.
Bunkie, gingerbread sounds great about now, with thissnowstorm raging outside, maybe with some Irish tea....
Truebf, my MO has not discussed any type scans, etc. I have an appointment with her everythree months for bloods because I am on tamoxifen and I am watching for symptoms- bone pain, stomach pain, or headaches that dont go away.0 -
Virtual Guilt here....
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Sew, cow, I didn't get the subtle humor until Sew pointed it out...
Cowpower, sooo happy for your good report. This calls for a celebration....
virtual dessert buffet
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I am on the rain/snow line on LI so I wasn't getting much snow...but the temperature dropped and it is all snow now so it is piling up. Still, I am only at about 6" and other parts of LI are over 30"!
Cowpower, are you still getting snow?
Be safe everyone, and if you are not on the east coast, have a nice week end.
Joan
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Elizabeth, are you getting the big snows that are hitting Boston area? I hope you have power and are warm and safe.
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Good morning ladies. I have pulled an all nighter due to some serious stomach issues. I take Protonics for my Gurd/Reflux problems. Usually it is okay but last night we bought a frozen pizza for dinner. DiGornos......pepperoni with cheese stuffed crust, it was on sale really cheap. We had never used that brand but both craving pizza. We had not had it in so long. Usually when we order pizza from one place I tolerate well, we just get plain cheese. It is so good it doesn't need toppings. Anyway we ate early, very early, 4:00 so I figured that would give me plenty of time to digest before bed. I was tired and went to bed early, about 9:00. I watched TV for a couple hours and finally fell asleep. I woke up at midnight...reflux, all that crap came up and it is like battery acid. Horribly nasty and painful. Then I began burping, big deep burps that tasted like rotten eggs. My stomach was churning madly and the heartburn was awful. Sorry to be so graphic but anyone who has ever had reflux knows how bad it is. I was so miserable, over the counter antacids did not help a bit. I ended up just elevating my head with extra pillows and burping all night. Terrible night and I am still up, but may try to take a nap in a bit.
You ladies are so funny about my cupcakes! I do take that as a compliment of course and am glad you enjoy my pictures. Now if I could really share them with you personally that would make my day. I am so so blessed to have met Elizabeth in person, I would love to meet any of you great ladies. I am just 30 miles west of Boise so if anyone ever travels through here I have a spare bedroom. Always open! Make sure I get enough notice to start my marathon baking of course. I'll run everything through the calorie extractor so you can indulge guilt free!
I watched the news very early this morning to catch up from the storm. I know everyone is well stocked but worry about you losing power. I used to love being snowed in from a big blizzard. We don't get them in Idaho, but had a few really bad ones when we lived in Denver and Wyoming. We were so fortunate to have kept power. I know there are hundreds of thousands of power outages reported already. My hope is that everyone comes out the other side unscathed...and you all stay warm and safe.
Sew what kind of bra did you find that works so well? I got two LE bras last year and they are okay but I would like to try something different. I pitched all my old bras as they were underwires. Eventually I would like a bra that is comfortable and has good support, but doesn't cost nearly a hundred dollars.
So may of you with the neck/shoulder pain, yes, me too. Although my neck and shoulder pain are much worse than the non radiated side. makes no sense to me. When I had the surgery to replace my neck disc, it did give me a lot more mobility. Still I get really bad pain in my left side. Sometimes it wakes me up, and the throbbing starts at the base of my skull right behind my ear. Then it shoots down through all the neck and shoulder. It is often so severe it feels like I can't move my head at all. This usually wakes me up about 3:00 to 4:00 and can keep me up awhile. I do take a pain pill and literally don't move for about an hour. My orthopaedic surgeon did say the MRI I had last year showed quite a lot of arthritis, and my MO just confirmed this week that Arimidex worsens arthritis. Three years, nine months to go.
I think of you all the time. You ladies are my heroes and I hope you know you are an inspiration to many many people here. I am glad so many of the newbies are gaining both knowledge and strength from this group. Then throw in some cyber parties and we can really have fun. For everyone struggling, every day you are further out from rads will improve. I promise! Dealing with this broken arm here is another distraction. I see the orthopaedic surgeon Monday for a follow up. I know i am so close to actually being healed and I can't wait. I also know i can't move mountains in a day. This has sure been an experience.
For all you out east, just try to get through this mess as best you can. I'll be thinking of all of you. I hope you all still have power and feel up to keeping us updated on the snow and damage in your area. I am keeping connected via the news. It really is getting deep in MA. Wow.
Take care my friends. Love, joy, and hugs to all.
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Hi all,
I'm good here on Long Island (I heard it's been on the national news)...have power, sunshine...and huge piles of snow. But I have 2 days off so no rush to go out or move snow around.
I hope others in the East are doing well.
Back later...
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Joan, glad you're doing so well in the storm edges....at least I guess you must have only gotten the edges. You only missed cow's subtle reference to a half time mammo because you were still at college professing level....I'm on the down side of many many years removed from education......so notice the more "simple" references...lol.
Janis, my buddy! Good to hear from you. I'm sure sorry about your latest episode with gerd, I think it was your system asking for cupcakes instead.). You know the bra I got is from American breast Care. They hook and zip up the front and have wide Velcro adjustable shoulder straps. Mine cost $65. No seams anywhere near the breast and there is a pouch for an insert if you need one. It looks a lot like the believe which runs double the money. The only problem for me is that being large breasted the zipper tab sticks out at the top and looks funny under clothing.....buti just grin and ignore it. No one has year asked me what the heck I'm carrying in my bra .
Gotta go....dinners on the table.....0 -
Man, typing on an iPad is sure a challenge. While having been removed from an educational environment for years....I do know how to spell a bit better than the last note indicates! Incorrect them, but they are too numerous....consider it a challenge, or just skim or even ignore....lol.
Janis, the style number of that ABC bra is 519. It can be found on the web I think although it would be good to try it on first if you've got a place that can fit us....
Hope the east coasters are all ok...it's kind of quiet here and in this case no news is not necessarily good news...0 -
Hi all. I was out on my Saturday hike and Costco where we managed to behave ourselves.
Janis, the reflux sounds so painful, I'm sorry you had to go through it. I always have a reaction to tomato sauces on pizza (acid, I guess) but nothing like that!
Joan, how am I going to eat my mixed grain pilaf and bean burgers after that lovely picture! I want to jump right into that pile of chocolate...it is my new secret fantasy!
Cowpower, I have an MO follow up in mid March and have been instructed to go get a blood workup before hand. No scans or anything for the bc.
Did I ask before? Have you guys tried Genie bras? They are cheap, pull right on, can take inserts and go into the wash. I work out in them sometimes, and also wear them for daily wear. I was fitted for a similar bra by a bc person, and it cost me triple. That bra shrunk, but my $10 Genie did not! (19.99 for a 2 pack)
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