Radiation recovery
Comments
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Julz, Sorry youre having these issues....each of us have such strange reactions it seems we must be crazy. I didn't have chemo, although I do take an AI. It seems to me I did have hip issues right after rads, and they wouldn't have been related to the AI as I hadn't been on them. My BC side shoulder has a tendancy to stiffen up and I have to stretch it out daily. That also started during rads. Several women have mentioned shoulder issues. Yours does sound a bit like a mild lymphedema to me though, as that does cause achy or funny feelings. And I've heard of women with leg lymphedema after BC. You might look in to seeing a specialist about that. Also, you're probably heading into menopause, and that can mess with your joints for sure! Good luck, and I hope you find an answer, or at least a way to deal with this.
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Hi all,
SAB, I can't get the Anti Cancer( A New Way of Life) on the Kindle. But I did find an Amazon gift card I got from someone, so I can order it. Question about low meat diets...what do I eat if I can't eat soy? I am trying to do low carbs so meat and fish are still in there several days a week.In general during rads, I had a very painful shoulder - it would lock up and hurt badly while I had to stretch and hold on while staying still...and I have chronic problems with getting enough air....it used to be from anxiety but now am not sure. My worst discomfort now is from the AI drugs - painful arthritic conditions in my thumbs, palms of hands....can't open most jars...and sometimes knees just don't work like they should. I guess it's a combo of rads, AIs and getting older. Will I ever know? I do not think so.
nite all...getting up soon.
Joan0 -
Joan, I plan to make changes to my diet based on the book, but I doubt that I will go completely "meat free" because I don't feel that this is necessary. I will be adopting more of an Eastern philosophy in terms of my cooking, where vegetables are the star of the show and small amounts of meat are used almost as a condiment. I will also buy only organic meat from a store like Whole Foods. It is more expensive but since I won't be eating 12 oz NY strip steaks any time soon, it should be affordable since I will be buying so much less.
I will also be buying my veggies from a local organic farm as often as possible during season (of course our season is short in CT unfortunately) to minimize pesticides etc. and buying my other veggies from stores like WF or other healthier option stores that sell organic, pesticide free, no GMO veggies. Even stores like Whole Foods can't guarantee that your food is totally pure. I may even begin gardening again this spring to ensure that I have those veggies that do not use pesticides! That will be both relaxing and give me the result I am looking for.
Making SOME changes will be better than making no changes is the way I view it. I can't and won't go overboard and become super over-zealous about what I eat and use in terms of products. I have to live my life and I think doing even some things to minimize my risk will be helpful. Some of the changes I can adopt immediately are things like using glass to reheat my foods in the microwave. I was guilty of using those Glad plastic containers to heat food up. Ugh.
So, whatever we can do to decrease our risk will help is the way I see it. Since I already have some arthritis, I am hopeful that I can get by taking those AI's and that the SE's don't completely debilitate me to the point of severe pain. I know that daily exercise will help with that a lot as many women have said that this was the biggest factor in being able to at least tolerate the joint pain.
So much to learn. So much to consider. So much that sometimes it feels like my head will explode! We are most definitely a sisterhood and we can HELP one another with information and that is a wonderful thing.
Gonna get ready for work. Have to write my blog and head up to the shower. I write a weight loss blog everyday for WW and if I don't write something they send the police to my house to make sure I am alright..lol. These on line communities are very tight once you are there for a while. I think they are great and real friendships/bonds can be formed even when you never meet someone in real life!
Have a great and relatively pain-free day ladies!
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I have Anti Cancer on the kindle??
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Joan, I get protein from beans of all kinds, and many veggies have protein as well. Quinoa is a high protein grain. Protein bars with whey protein can help in a pinch. Nuts. Egg dishes. I bet Sew has some good suggestions too.
anticancer doesn't prohibit meat, just suggests organic chicken and grass fed beef (grass feeding insures the balance of omega 3 and 6 that nature intended.) Giving up meat is a decision I made in part due to pressure from my vegetarian daughters, in part because of cost of organic/grass fed and finally because I find that I am enjoying it.
Last nights dinner: Fennel/apple salad with cranberry, orange and pistachio nuts, oven roasted vegetables and brown rice. Yummy.
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So, heard back from the RO when I called about shoulder pain and stiffness. She, or rather, her nurse, told me that the doctor only treated me for the breast, not the shoulder, and if I was having problems, I needed to see my GP for treatment. I am so done with her. I have a 6 month follow up in late summer, and frankly I feel like why bother going? If she's only concerned with my breast, and everything looks fine, why do I have to see her again? Hopefully I'll never need rads again, but if I do, I will not go back to her. She's been like an ice queen the whole time!
Grrrr....sorry, just had to get that off my chest, no pun intended!
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Andrea,
The shoulder pain is *probably* because the rads shortened the muscles it affected. Some of those muscles attach all the way through the neck down to the hip. The PT/OT and stretches are helpful, but (IMHO) you need to go straight away to "pain management." When my shoulder and neck pain hit, it hit about six-seven months after rads ended. I didn't see the connection. I was doing the stretches. I had been to OP. When it first hit, I was down and out for 6-7 weeks! I thought it was a fluke.
Since then, however, it has come back every 3 or 4 weeks, usually for 6-7 extremely painful days when, again, I am down and out. I can't even drive.
Finally, after contemplating going to the emergency room because the pain was so bad , I met with my MO who wouldn't do anything about it, but did make a referral and sent me to pain management. THEY knew ALL about it.
The thing is, with my shortened muscles, the least little thing can trigger the pain episodes. The exercises still help best in prevention, but driving in snow where you grip the wheel sort of thing), using a mouse on the computer too long with an extended arm, sleeping wrong, lifting groceries too heavy or out of balance, washing the floor, stress, or trying to do more than I can (I am at 80% of my old energy now -after a year- but no longer have a cushion to push past that and my gyn has explained that I may not regain more - but, hey 80% is pretty good in my book - I just have to watch my over-estimation on what I can do and remain aware of when the energy is as far as it can go before going too far)... All these can bring it on. I am now keeping a diary, so I can become more preventative. But I now also have a team to call, muscle relaxants and pain meds that are not daily (by my own choice), but that I can take when an episode hits. Since having a pain management team and these meds, (this is recent, I only began seeing them seven weeks ago), I have so far had one attack. Instead of 6-7 days, it was five days and with the help of the meds during, (greatly helpful), the pain was under control if not eliminated. And then, after that five day episode, I had two non-med more days where I had no pain just a sense of weakness in my shoulder. I now realize this condition may come and go or be triggered by many things and may happen again and again for the rest of my life. But, with my pain team, I can live with it and not have to endure that horrid pain so badly nor be alone with it.
It is hideous that so many ROs don't acknowledge the SEs so that women feel guilty about complaining or dismissed or alone or even crazy with their pain. Especially when there is help for them and compassion too.
My gyn says cancer doctors just feel so guilty that they are often in denial. They don't really want to see their work made you suffer. But leaving you to suffer in silence or confusion is wrong. Especially when help is available.
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April,
Little changes at a time. We - none of us- can do everything all at once. Little changes.
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Truebff, reading this account of your pain from rads was truly disturbing to me. I work full time and I can't even THINK about being down for the count with this type of issue. I see clients all day long and use the computer. I am turning quickly to pull paper out of my printer as it is behind me on a credenza and already have issues with arthritis and bursitis in my left shoulder (which is the rad side) and I have a knee that is bone on bone and already take pain meds for that. I can't keep medicating myself further or I won't be able to function. This is gonna be a fun ride, especially since the SE's last much longer than the tx in many instances. I am really starting to freak out. I just know that if I get any SE from rads, this will definitely be one of them...just a hunch, but since I already have a compromised shoulder on that side, the odds are good. Ugh...just one more thing about this shitty disease.
Hoping you get some relief and that somehow it just goes away eventually.
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Question for those who have completed rads - about how long did it take you to get your energy back if you suffered from fatigue? My RO today said expect to be about 75% back to normal at 4-6 weeks out .... was hoping to have the energy come back a little quicker than that as my daughter's Bat Mitzvah will be 6.5 weeks after I finish and there is still lots to do!
Getting a little worried ....
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Truebff, thank you so much for your response. I am going to contact my PCP and see if he'll refer me to a pain management specialist. I'm so glad to hear it's working out for you, and I hope I'll be in a better place soon with this shoulder pain. I just wish doctors would just admit that treatment sometimes causes these things, and not act like it's never been heard of before.
Annette47, I think everyone recovers from fatigue at a different rate. Some seem to get over it quickly, others not so fast. I am 2.5 months out of rads treatments and still get fatigued. Some days are good, but others tire me out. Good luck with your treatments!
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I think I am overly emotional today and I haven't even started my tx's yet! I just read the poszt from Annette about the fatigue and that she wants to be well for the Bat Mitzvah and it made me want to cry. The cut us, they poke us, they zap us and they give us medicine that makes us want to crawl out of our skin or worse and still everyone says "Oh it is going to be fine. You are strong and you can do this"
I just want to scream "I don't want to do this!" I think everything is catching up with me today. I know in my head how lucky I am that I have DCIS and not invasive cancer. It doesn't make it easier for ME emotionally though. It is still effin cancer. I am tired I guess. Had a long busy day at work and emotionally I am a wreck. Stil no word on the path report and I have a hunch that my BS won't call me with it. She will likely discuss the whole thing at my post op appt which is a whole week away! I want to know NOW if I got clean margins or if all that was in there was DCIS.
Ugh, just venting. I am so sorry that all of you wonderful ladies have been through so much and I am whining and I haven't even started tx yet! Please accept my apologies and thanks for listening. No one gets it. My BFF and my DH try to understand but they don't.
Hugs and thanks for being here!
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I am 4 wks out from finishing rads. The fatigue is getting better. I am going to try to downhill ski this weekend. I have a season pass that I haven't used yet. I am hoping that they will just let me carry it over to next year. I need to start to feel normal again. I have my follow up with RO tomorrow. Everything looks pretty good.
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Hi, I mostly lurk here, I am waiting for BRCA results, if negative I begin rads right away. Although something in my head is making me think more and more about BMX. How do you decide?
April- I am sorry your feeling how you are, I feel the same as you today. I am mad, I dont want to do this, I dont want to have to deal with all of this, I want my normal nice life back and I want it back NOW! Whew... I had to get that out. Sorry I am not much of a strong shoulder, am I? Just wanted you to know we all I assume have these feelings, IDC, ILC, LCIS, DCIS, etc... we all have a right to feel how we feel, it all sucks!
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Annette - it has been 3 mos and mine is still missing. I get about 4 hours each day to try and do normal things. Some days I can not even get out of bed. My RO said that my age (60) might have something to do with it and my auto immune disease. I am trying to be patient.
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Annette, You are such a good Momma, thinking about your girl instead of yourself. I found that doing some light exercise every day helped my energy level tremendously. Practice your hora! That should do it
. You'll get it all done, a little at a time, and ask people for help if you need it, especially from others in your daughter's class. Take good care of yourself, and you'll be better able to care for others. Lemon, there is a lot of good literature about relative effectiveness of both procedures. The rest is piece of mind. I went for the lumpectomy with a similar dx, but I know that every woman has to weigh the procedures herself.
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er, peace of mind.
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April485 - as others have noted its different for everyone. I am with you in that I found the waiting for the final pathology the most difficult. As it turned out I only had DCIS and I think its about 80% that you will too. I see on these boards that others have had a tough time with radiation but I have to tell you that I was just fine. I had a bit of nausea and shoulder pain but it went away very quickly and yes they told me it was nothing to do with radiation! I finished rads last August and had lots of company staying with me all summer, including my daughter with 2 preschoolers. It was fine. Just get on with life. Not every medical complaint you will have from now on is to do with breast cancer or radiation.
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Wow, there's so much going on, it's hard to follow all of it! I'll just chime in with my 2cents worth. On the fatigue...Annette.....I think you'll find that the fatigue lessens daily, but it may take months to get your full strength back. That being said...it doesn't mean you can't function, most people can. It just means you may need to sit quietly for 5 minutes and then be up and off again. At least, that's how my fatigue works. For me it was like you suddenly hit a brick wall and walking across the room is out of the question....however it passes. Takes longer for it to pass (30 minutes?) right after rads then lessens over time. I think you'll be able to manage the Bat Mitzvah, just delegate...and you've got such a clear goal, that will help, I think. Oh....and be sure to exercise thru all of this. Not strenuously, just even gentle walking helps tremendously which is counter intuitive, but is true.
Truebff, I'm so sorry about your issues with all the pain, but am so glad you've found help. And I think your story is helpful for all of us. April, your "weak spot" as I call it from rads will not necessarily be a shoulder. Mine was the nerve endings in my chest, even though I've got two repaired shoulders with arthritis! After that it was my hip and varicose vein pain (excessive), but after rads I was able to rest and get that under control. So...if you know that shoulders might be a problem, I'd suggest you start now trying to strengthen them and keep them stretched out. If nothing else, you'll feel good about at least doing something to help and it sure cant hurt. I also think that the body chooses its own path to letting us know we're doing too much and to take it easy for a few minutes, or extra sleep some night, or cancel some activity and take a "me" day.
Lemon and April, please feel free to rant all you want. We, among everyone, understand just where you are and agree. And you're both in the front of this long journey when it feels even more unfair. At least it did for me. And Lemon, the decision about mx, vs bmx vs rads is a very tough one and intensely personal. I'd suggest talking with your health care team, including your surgeon, and your rads doc. While they can't tell you the right path, they can help you see it clearly.
Sab...omg, I've never been anyone's hero! I don't think I qualify, but I do find the vegetarian way of life is perfect for me. Joan, I haven't given up all soy. My MO didn't feel I needed to and I think all things in moderation are good. That said, we only eat tofu/soy based products a couple times a week, and they aren't the main ingredient in any meal. And yes, Sab, you get protein in the silliest things....coleslaw has it, of all things. I've tracked my diet for carbs, proteins, fats, and about 6 vitamins, and I average 50 to 70 plus grams of protein daily. And I rarely eat eggs or cheese. I do eat plain Greek yogurt over fresh fruit with ground flax seed for breakfast, and that gives me 21 plus grams of protein to start the day. I am careful to eat flax seed (omega3's,) and since cancer do also take a fish oil supplement since I don't eat fish. Sab.....your meal last night sounds just wonderful! I was traveling last weekend, and by the time I managed to find a meal that was just veggies (roast veggie sandwich and Thai salad) I was in 7th heaven. I had missed them.
So....this has now become my 25 cent response....but I'm sticking to it! Great to see all the new gals, but am so sorry we had to meet this way.0 -
Just wanted to thank everyone for your thoughts - feeling a bit more optimistic today after my husband got the kids to school and let me sleep in a bit! Still hoping the fatigue lessens enough in the next couple weeks (I finish rads next Monday) to have the energy to take my daughters dress shopping .... the thought is very daunting at the moment!
I have been exercising all through - if walking the dogs counts! Prior to rads I ran a few times a week but got bronchitis during my 2nd week of rads and stopped because of that ... by the time that was over the fatigue was enough to make me not want to run. As I said to a friend about the exhaustion "it's not so bad that I can't function, but it's bad enough I'm not enjoying functioning" ... sure hope it eases enough to enjoy my daughter's Bat Mitzvah!
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Annette welcome to the group, you came to the right place. You will find a lot of cheerleaders here. I hope you find that the fatigue lessens soon. Make sure to get plenty of protein, I know that helps. Walking the dogs counts as exercise, definitely. Even a short walk helps and keeps your spirits up as well. Think positive and focus on the milestone ahead for your daughter. Don't let the planning for the big event overwhelm you. Just try to focus on feeling well and know that the Bat Mitzvah will be a day to cherish.
Joan, I too wonder if my new joint pain is from AI's, or a natural progression of arthritis. Maybe a cruel coincidence to further confuse me? LOL. My mom had terrible arthritis and had knee replacement. My dad has it and his fingers have changed and gotten very swollen over the years. His knees are toast too, and his doctor wants him to have knee replacement, but he refuses to consider it. I had the disc fusion surgery and still have terrible neck pain. My doctor says it is arthritis. Great, that is sure not improving with time. I do have to wonder though how I would feel if I wasn't on Arimidex. Hopefully I will find out in 3 years, 8 months.
Mother Hen/Sew.....oh gosh I love reading your posts! I used to be so much better about posting and being part of the Welcome Wagon! You are so helpful and just full of good advice for everyone. I do need to find more protein sources. I eat oatmeal every morning with chopped almonds so that helps. I eat dairy but no eggs and I do not eat fish or seafood. I do eat beef and pork and chicken but not daily. I just have a terrible diet and have been lousy at trying to improve it. You are really good and eat so healthy. Way to go Sew!
Welcome to everyone new! This thread is moving fairly fast and I haven't been doing a good job keeping up. I love this thread though and hopefully can get to know everyone. Have a great day ladies!
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Today was a better day
even though I tossed and turned all night long and did not sleep well. I just have a better attitude about it all today than I did yesterday. I felt totally overwhelmed and whiney..lolYou guys are the BEST! Thanks to all of you who took the time to make me feel better. I hope someday I will be in a position to help a scared newbie here.
You all rock! xo
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Hey April and Annette..... Glad to hear you're both more chipper. Im going to let you in on my own secret information, my own explanation for all those times when I am down, jumpy, annoyed, doubting decisions and otherwise unlike myself. It seems to have to do with the full moon. I kid you not! I've found that if I get "short" with my DH, it's usually always a full moon. So...if I find myself getting down I chalk it up to the full moon and just wait a day or so when it passes! Ok....call me totally weird....but it's true for me! I won't even mention all the crazies who showed up on full moons when I worked with the public.....
And Annette....way to go.....you're just about done! Hurrah! I'd tell you to plan a celebration, but I guess you are already planning a big party0 -
Janis...uh oh...I should have read your post earlier in the day before I treated myself to a bakery cookie, some yogurt covered peanuts AND pistachios. Oooops...guess I've fallen off yet another pedestal...lol.... Sounds to me like you're eating a balanced diet...and you've lost all that weight so I think youre doing fine. Tomorrow I see the MO and am going to have to ask him if I should switch from Anastrozole to letrozole (Arimidex to femara). As I understand it the letrozole is more potent and works better for women who have a high BMI. Mine's not that high, but is a point or 2 over normal. If I'm going to take this drug, I sure want it to work! Do we really only have 3 1/2 years left on this? Amazing....
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April, I am really pleased to know that we have been able to cheer you. Everyone needs a safe place to express themselves and vent if need be. It is a large boat and we are in it together. Sharing our stories, encouraging new friends, just offering a giggle or a cyber hug....it is what this group is about. Some of us are far enough out to share our experiences and what helped us down this path. Remember all of us were newbies at some point. Don't worry about the bad days, they happen. Vent, vent, vent here as you need to. Don't hold it in. You have been here long enough now to see how we behave. We have cyber parties and laughter and tears. Of course lots and lots of hugs and love abound. Just for you Sweetie. Everyone here knows I am guilty of providing sugary snacks!
Sew, you are the best Mother Hen ever! You always manage to make me smile. My MO did mention switching from Anastrazole to something different. He mentioned Femara but he feels it is so similar to Anastrazole he is not sure it would help much. He talked about Tamifoxen too, but it has some SE's he is not thrilled about either. It is always a quandry! So for now I am sticking with it. I know, we have less than four years left!
I have been eating okay but can't kick the sugar. I can't say I am trying very hard. I made a cake this afternoon, but Chuck esnted it. He actually made the cake from a mix, but I made a homemade cooked frosting. It is so decadant. At least I know what goes in it...real butter for one thing. I could make a meal out of butter. My bad. I am a work in progress. Trying...much of the time! Hugs my friend.
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Hi I'm new here.I posted a few in Rads but only 1 person answered or read my post so I thought I'd see if I had better luck here.My mapping session was today and I start Rads ties and Wedns is my first session that counts.I was really freaked out last night about the unknown of what to expect today.Not nearly as bad as I thought it would be.I tried to relax and pretend I was on a ride or something and 3 min later they came back into the room.April I hope you get your path results soon.That is sometimes the hardest part.I found myself combing through the first report from the biopsy trying to understand it.
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Welcome Josie! I think this thread will be helpful for you. It moves fairly quickly and I know we try hard to be helpful and informative to all the new members.
One good thing, we all survived rads! Most of us can look back on it now and recall the same fears that you have. It is normal to be scared, but make sure you ask your RO lots of questions. Write them down at home of that helps so you remember when you see him. Hopefully he can reassure you and you will know of course what to expect during treatment. Remember there can potentially be many side effects, but not everyone gets them. Try to relax, think positive and come here anytime. If you find that the stress is bothering you a lot, please ask your RO for a prescription for something to help you relax. Spending time at home or work worrying is so difficult. If you find it to become overwhelming, tell your doctor! Taking something like Xanax or Ativan for a short period will help. Fear of the unknown is really scary, but once you have had your first treatment you will know what to expect. It is very quick and completely painless. Deep breaths and ask questions. I know trying to absorb it all is really difficult initally. As you move forward you will find it gets so much easier, and you'll be a pro at BC and treatments, etc.
So offering you up some gentle healing hugs. I suspect it will be the first of many!
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Welcome to our new ladies! Rads goes by quickly. The worst part is driving to the cancer center every day. it gets old fast. At least that's how I felt!
Fell off the healthy eating wagon. I blame the Girl Scouts. Darn Thin Mints!0 -
Justmejanis,thanks for the encouragement.I feel very proud of myself for getting through today.I felt so overwhelmed and wanted to just break down and cry while sitting at my desk after lunch.I feel this was the hardest part of my radiation .I think the rest will be ok.
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Josie - you will be fine and will be finishing up before you know it! I found for me, the hardest part was the first day of treatment. The planning sessions were new and different and that was a little anxiety inducing but not too bad, but the first day of treatment it took FOREVER (because they check and double check everything) and even though I had been told that, I couldn't help feeling like the next 6 weeks were going to be like that and I didn't know if I could do it. But the next day, it was much quicker and easier and now 27 treatments later it's almost over with, so even if your first day is rough, hang in there - it will get easier.
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Hi Josie....you did great girl! It's really hard to start all this and I for one, can certainly relate to the tears....that's what I did best during rads! I strongly recommend Ativan. Just 1/2 of one calmed me enough to get past any embarrassing tears.
I suggest you look back through this thread to get tips, but my best ones are: exercise, gentle walking will do wonders to help with the energy level; lots and lots of protein daily...at least 80 grams...your body is fighting to heal itself and will need this to do its work....lotion, lotion, lotion.....put it on in the dressing room right after treatment. Look in to 100% aloe gel, it helps keep the skin feeling good even when it (maybe) starts to feel hot.....you can use a cornstarch "pounce" if the area under your breast gets chafed....oh, and plan on getting rid of the t-shirts you wear because they get pretty trashed from the lotion. Good luck....and keep coming back here to check in0
