Radiation recovery
Comments
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Great pic April.
To anyone in the path of this horrific storm please be safe and hopefully able to stay warm. In Tennessee where I live we dodged a bullet. Nashville wasn't so lucky. We were supposed to get blizzard like weather but instead we only got a few inches of snow. So lucky.
I'll be watching those games tomorrow too Joan!
Diane
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25+ inches. It looks beautiful in the moonlight tonight.
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I bet it does look beautiful, Brutersmom, but then you have to clear it up, lol Don't work too hard on that part.......
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Here is my favorite picture from today. A plow and snow blower make things much easier.
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The snow is beautiful.
Congrats to the Denver Broncos and Carolina Panthers. Should be a great Super Bowl!
Diane
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It just seems so weird that here I am in southern Vermont and, with a major northeaster snowstorm, we didn't get a flake. Weird, yes. But very, very nice.
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In CT we ended up with varying amounts from South to North...strangest storm ever. We are a tiny State yet just in ours we ranged from almost 17 inches along the shoreline to less than 1/2 inch in the NW corner where it is usually the largest snow totals! I ended up with just over 10 inches...not exactly a tiny amount but not as bad as many either. Storm surge really was bad for some along the sound though and flooding was an issue there. Jersey shore got slammed again! Feel bad for them cause many were just rebuilding after Hurricane Sandy which pounded our poor state too. Ugh...weather...unpredicatable for sure!
Oh and thanks for the compliments about my daughter and her sweetie. She just turned 35 and she made partner at her law firm. Very proud of her. She has made all of her career goals so far. She is one smart cookie for sure.
Just wish those two would set a date for the wedding already...LOL. He is a lawyer too and they are just so busy all of the time.
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my last rad treatment was in Oct. Is it normal to feel nauseous and tired still? Not everyday, there are a few that are not so bad. I vomited yesterday once and today once. No appetite at all. Today I took a pill for nausea...didn't work very well. I just saw my oncologist and rad doctor and they said nothing about losing 7 pounds. At the time I was feeling pretty good. This has been going on for about 2 weeks now. I have an appointment Thursday with a PA. But, if this is the way it is going to be from now on...guess I just have to get used to it?
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sew button...doesn't sound normal to me at 3 months out of rads. I think the fatigue certainly could be normal especially since some days you feel great, then you don't. That fatigue will get better and better. You've been thru a lot and PTSD is pretty common with Breast Cancer. But the vomiting sounds kind of like you have the stomach flu. I don't recall that being a potential side effect of Arimidex which I see you're taking.I'm glad you're seeing the NP. We have a stomach thing going on here in N. Calif right now. Good luck.
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Thank you MostlySew. I sure hope that is what it is. I did have the "super" flu shot, but I guess you can still get some strains of it.
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yes, this intestinal thing around here doesn't have a fever like the traditional flu...sort of mor like noro virus. Seems to last 4 or 5 days even in otherwise healthy people. Anyway, while its not nice to wish that upon someone, I sure hope that's what you've got instead of a delayed rads reaction.!
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Sewbutton, welcome, I hope your tummy feels better soon.Hopefully it is the stomach bug and nothing related to Rads. I know after all treatments are over we all felt relief but I know personally I think your body and mind need a while to recover. It's almost like you have been on the alert through the cancer and treatment and now your body is like ready to rest now. It will get better.
Today I see my MO I cancelled last week due to the snow(we only had like 3-4 inches) but roads were terrible. I can't believe it's been 3 yrs since my diagnosis. Time flies.
My new job is going good but sometimes stressful. Apparent my they are introducing new tasks that I will be responsible for as they think I'm ready. I knew there was more to it than I first thought. I know it will get easier as I get used to it. Problem is there never seems to be enough time in the day. I appreciate that the other MAs are always willing to help when I need to.
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My oncologist appt. Was just fine but my Vitamin D levels are 16.She tested my Vitamin D levels 6 month ago were low but not that low. Maybe like 22. The normals are like 30-100. She said she likes her cancer patients to be at a 50. I was given a script 6 months ago at my last visit but I never filled it. She wants me to take 50,000 IU once a week. Until I see her in July.I guess I will fill it . It just seems like a lot to me weekly.
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Josie, that is standard protocol when someone has low Vit D. Your body will excrete anything you don't need so no worries. I had the same prescription as you except I had to take two of them one week...wait and take two more and then take two regular dose D each day. I went from 17 back up to 29 and she was happy with that.
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Josie123, I don't know how but my Vit D got down to 10 living in a very sunny state. My doctor gave me the 50,000 for a week for a period of months and still it didn't get up to the 30 level, It takes time to bring up Vit D levels so you have to take it everyday religiously. Now I have been taking for three years @4000 a day and it's only to 45. If you go to youtube there are all kinds of videos on Vit D. Just do a search. It's one of the best things you can do for yourself OTC. Your bones and muscles will love you for it.
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April, Marijen
Thanks, I will start taking it as soon as I get it fro the pharmacy
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Sewbutton, lying flat on that blasted table with your arms over your head encourages gastric reflux, which might just have irritated your esophagus sufficiently for you to still be feeling the effect. Also, as MostlySew indicated, PTSD is quite common after rads, as is anxiety. For many of us, any kind of stress goes right to the tummy, and, of course, this is a stressful time.. A third possibility is that arimidex is the culprit. For me, it made me ever so slightly nauseous. After a couple of weeks, I stopped noticing the icky feeling, but when I switched to another anti-hormonal, I gained weight.
Glad your appointment went well, Josie, and that your onc tested your vitamin D. Also glad the new job is going well, stressful or not. I'm hoping that if you find you need a few extra hours, that they'll be really agreeable (not like at that job-before-the-last-one).
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Thank Brookside
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only thing that has me bummed is that I
gained 8# since July probably thanks to the Lexapro. My Mo said to try exercise or my fitness pal.Ive been really tired lately probably getting used to getting up earlier and working 10 hours. I'm sure the low vitamin D has to do with my fatigue too.
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sewbutton---I had nausea for about a month when I first started with Arimidex, but you have had yours several months now...... Let your mo know and see what they think. Never ignore a new symptom.....especially if it persists.
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It's easier to lose weight by eating right and eating less, rather than exercise. I'm convinced fatigue adds pounds : )
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Hi All,
Reasonably, how long might we still attribute fatigue to radiation? I had four weeks of radiation, finishing the week before Christmas, and I haven't felt really well since: a chest cold/asthma/laryngitis thing for a few weeks, and just as I was starting to feel better a wicked sore throat that led to sneezing and endless nose-blowing. I just want to feel healthy, but instead I feel old (turning 52 this week) and fat (put on several pounds during breast cancer treatment). And often sad. But maybe that's a topic for a different discussion thread. I normally have 1 cold a year and it lasts about a week. Maybe I'm just run down?
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BeeBee, We can help you better if you make you diagnosis and treatment viewable to members is the profile section. Are you on a hormone drug? Did you Have chemo. As for fatigue. That can last for several months or longer. Each month you should feel a little better.
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BeeBee8, this is the perfect place to discuss all these rads recovery related issues....and fatigue, sadness, etc. are all things that we've discussed here. So, Welcome! The first thing to remember is that you've been thru a lot. The shock of having BC, the surgery, rads, Holidays and now the winter cold/flu season has set in. This up and down you've felt is perfectly normal, at least to most of us here. We've also talked in the past that going thru breast cancer treatment can cause a PTSD response, and also a feeling of loss, and a sense of dread. These will all get better, but it takes time. I can't give you a time table, but would think that once you shake off this sore throat you'll start feeling much better again. And at least here in Northern Cal, the sore throat/cold thing is knocking lots of people out of action for weeks, and they didn't just get finished with rads. Give yourself some slack. You've been thru so much and now you've got a cold/virus. Your body has been working really hard to get thru this, so you will not at this point bounce right back as usual. You will again, I"m sure. The only suggestions I can offer for you right now is to concentrate on eating extra protein to help fuel your body.. Lots of liquids which you're probably doing for the sore throat, and a bit of exercise if you can handle it at all. It doesn't need to be strenuous or be a long duration. If you can get out for a walk even to the mail box or down the street it should help you feel a bit better. I know that I had several months of up and down days. Then, I finally realized that BC and all it encompasses was no longer occupying my entire life. I was feeling better and better. I no longer dreaded any follow-up Dr. appts. You will get there too. Quite a few of us have had our treatment almost 5 years ago now, so we're not exactly at the stage you are, but we all remember it well. Good Luck, and join us so we can support you during recovery.
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Bee . Bee, welcome, I'm sorry your not feeling too well. I hope you take Sews advice. The cold virus that's been going around has been lasting like 3 weeks. Give yourself some time. You will feel better soon. You have already got some really good advice. I can't add more than that .I'm 3 yrs out from Rads and still feel like I get worn out easier with less stamina than I used to.
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Brutersmom, thanks for your tip about adding my diagnosis & treatment. MostlySew, thank you for your kind words. josie123, thanks for chiming in as well. I never found an in-person support group in my area during treatment (they met once a month, in hard to reach places), so I guess this is the place to say it:
I am still really angry about my experience with surgery. I am angry that the Harvard-educated idiot general surgeon removed two auxiliary nodes in addition to the sentinel nodes because although they were neither blue nor radioactive they were larger than the sentinel nodes and she didn't know why. I'm 51! I was still using those lymph nodes! None of the nodes had cancer.
I am sad that the lymph node scar is visible with every workout top I wear.
I am sad to still be wearing this industrial-strength workout bra for Jazzercise because it's ugly and only a few of my tops work with it but it really anchors my breasts so they don't jiggle when I work out. The surgeon said it could take a year for the breast to entirely heal; the radiation oncologist said the tenderness I felt when it was accidentally bumped could be from the radiation, which ended a month ago. I don't know when I can switch to a lighter bra. Some of my tops don't fit right now because I gained weight.
I am sad that my breasts, which were once a matching pair, are no longer the same size.
I am sad that there is a blue tattoo between my breasts that is visible with several of my blouses. I don't care that other people won't notice it or will think that it is a freckle; I am not used to it yet.
I am sad that after finally losing and then maintaining a somewhat reasonable weight for a few years, I am now up to 200 pounds and my eating is not yet back on track to start taking it off.
Breast cancer is hard. It is still a shock to think, "I had breast cancer!" And scary when I had my month follow-up with the radiation oncologist and they were already examining my healthy breast. And yet I feel like an ass for "complaining" about these things because I had it easy. I hear stories about young Moms having double mastectomies and heavy-duty chemo to combat very aggressive cancer - women who are afraid of dying and leaving their kids without a Mom. I had two surgeries and a short course of radiation. I'm single, I have no children, it was not in the lymph nodes, my genetic testing turned out OK, I still have both breasts.
I've been telling people I am "recovering," both physically and from the mental and emotional trauma. I plan to write a review of my idiot surgeon for online sites, to help other women who may be trying to pick a surgeon with no information to go on. I also received a response from a woman at Group Health who is willing to listen to my suggestions for improving treatments at Group Health for other breast cancer patients. I just haven't wanted to do any of that yet. Trying to keep stress at a manageable level. Unwilling to go back into the experience in order to write about it. And being sick during Christmas. And then sick again! You are all correct; it will get better, I will feel better, I will have more energy.
Thank you!
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BeeBee, this is the place you needed to be. It's very very hard to go thru all this alone, and venting and discussion is a good thing. it allows you to get the thoughts out and organized, and then they may not hurt quite so much. At least they are out in the open. And, believe me, we all understand all those feelings you have. All of us have had some combination of all of them. I think writing a summary for yourself is a good thing. Posting that review of the surgeon at their on-line site is something I hope you'll give some serious thought to. In the long run, you needed to be able to trust your surgeon that she would do the best job for you without going too far and removing too many nodes or too much tissue if it isn't needed, but also not going not far enough and taking too little tissue or not enough nodes which can potentially cause serious issues (more surgery, return of the cancer) The explanation of the nodes she took being quite big and she didn't know why makes a certain sense to me because, personally, I would like to err on the side of caution and find out just why those nodes were so big......was there another problem that needed to be addressed? But that's just me. Perhaps another discussion with this surgeon will help you come to terms with what has happened.
As to the support bra, I wore mine for at least 1 1/2 years...and it had a zipper in front which stuck out. It was a compression bra. I wore it all the time, not when just exercising. Eventually I sort of wore it as a badge of courage..... I wear regular bras now. If you're having problems with swelling or pain I'd think you need to do 2 things: 1) continue to wear supportive bras and 2) be evaluated for Lymphedema. A good, qualified Lymphedema therapist can do wonders for our poor battered breasts as far as reducing swelling, massaging scar tissue and etc. I think mentally I had the "keep away from my breast" feeling for at least 6 months following all this. Perhaps less, but I do recall hating crowds or situations where someone would want to hug me. I quickly learned the "sideways" hug. You probably already know that one.
I hope this has helped some, and keep those lists coming. They should be pretty cathartic.
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BeeBee, I hear you. I had two non-sentinels removed because they were “grapes on the same cluster" as the two sentinels--sadly, there was no way to leave them there because there wasn't anything for them to which to remain attached to the lymph ducts. I had a very easy (can't say “relatively easy" because it was too easy) time of rads, but I seem to be paying for it now: a hugely enlarged tumor-cavity seroma (causing me to have to go up a cup & band size in my bras), the encapsulating tissue of which is now fibrosed from rads. (My LE PT is trying add'l massage to try to move the fluid out, and has me wearing a special pad in my sleep bras to try and break down some of the fibrosis over time....a long time, probably at least another year if it my breast ever shrinks down to its otherwise destined post-lx size). I fear I may eventually need it drained, but then there's the danger of infection....and it refilling with fluid. At least my SNB-site seroma has finally shrunken to the size of a peeled almond.
The number of nodes removed (all neg.) plus the seroma seems to have precipitated a case of painful cording (w/o visible cords due to subcutaneous fat concealing them, but w/all the other symptoms) & early onset of LE (not readily visible but for the impressions made in the skin by even loose jewelry and clothing seams or creases). No fun. Have to kill 1/2-1 hr every day doing MLD self-massage (Medicare is about to stop paying for the PT doing it), and it is now apparent that any effort involving my right arm--from lifting a guitar case, to playing guitar, even to grating cheese, opening jars or scooping ice cream, will probably require wearing compression.
To add insult to injury, the Mediven sleeve for which I was professionally fitted was mis-measured (too narrow at the top) and both the Music City LympheDivas sleeve & glove were too long for my small hands, munchkin fingers and short arms. Was able to reorder a short LD's sleeve but had to exchange the glove for a gauntlet, as LD doesn't make shorter fingers and doesn't offer custom gloves in its patterns. (The Mediven Harmony glove fits, but is too stiff & heavy for guitar playing; but the other night I discovered I can fingerpick & strum with a gauntlet--or kinesio-tape). Waiting for delivery of the LD stuff, as well as the Extra-Wide brachial-band Mediven sleeve. Meanwhile, the Juzo set I originally bought is in danger of getting stretched-out & sweaty because I need to wear it every day and it wouldn't dry out in time if I laundered it.
At least letrozole is treating me fairly mercifully--though I do have to watch what I eat like a hawk, and sometimes watching isn't enough.
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BeeBee, I am sorry you are here but glad you are here. Your anger is very much part of the healing process. Cancer is not fair and the treatment makes you feel worse than you felt before you were diagnosed. A couple of things. Keep exercising it helps a lot with recovery. Rest when you need to. Be kind to yourself. Do you have a support group or person you can share with. The best healing I have had has been talking with others who have had cancer. I have two co-works who have been down the cancer route (different cancers) but similar feelings. If not we are here for you. I finished Rads in October and I still am not back to "normal". I had lost 25 lbs before surgery by changing my diet and gained a couple back over the holidays and now with some changes to my diet again I notice this morning I am back to my pre-cancer weight. Yea. The holidays were hard.
I hear ya about the tattoo. I hated it at first but I am getting used to it. My big issues like you is the difference in breast size. I still have some tenderness, no LE, rather muscle damage from rads and healing but that is getting better. Some of it is in my opinion that difference in breast size and lack of support due the the difference. Waiting is hard because it is really difficult to hide the difference in size even with sports bras, padding and loose shirts. Radiation must have melted away a lot of fatty tissue.
The lymph node scar will fade as you recover from radiation. Mine is barely noticeable any more. It is just a line. I notice it because I know it is there. Your BS sounds like she was looking out for you. She saw something that did not look normal and took precautions. Glad they were clear.
Back to radiation. It can take 6 months to a year for full recovery. I had pneumonia right after Christmas. Probably started before Christmas but I blamed the increased fatigue on the busyness of the holidays. That is better now I have not bounced back like I think I should. You may be more suceptible to virus etc. Your body has been through a lot and is still healing.
I have had several follow up exams and yes they do check both breasts. Uncomfortable yes but also thorough. Better safe than sorry.
Time is a great healer as you adjust and again breast cancer is not fair no matter what your situation. Give yourself time to heal and adjust to a new normal whatever that is for you. Ask questions here and feel free to vent.
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I certainly hear you, BeeBee. Probably the worst thing for me--and possibly for you--was the loss of control. If I could have, I'd have been awake during surgery to "discuss" with my surgeon the exact placement of the incisions (two lumpectomies on the same breast--one benign--plus sentinel nodes ), and to "help" him with any decisions that might arise. I hated the location of my sentinel node incision because every single garment I owned had a seam that hit me right in that exact spot. Every bra, every blouse, every Tshirt, every nightgown. It seemed like months before I was comfortable in any clothing.
I was very happy he had taken two nodes. In the operating room, the pathologist found both to be perfectly normal. When, long after surgery, the pathologist did his routine extremely careful, detailed, examination, however, he found exactly 10 isolated cancer cells in one node. Both nodes are technically negative because the techniques used to identify those ten cells were not available at the time when the definition of benign vs. not benign was made, so my signature below indicates benign nodes. I mention my experience so you will understand that although the pathologist might pronounce your sentinel nodes A-OK in the OR, both the pathologist and the surgeon know that this is just a preliminary determination of the absence of gross tumor. if the post-surgery exam had determined that there were indeed cancer cells in your sentinel node, how would you have felt had your surgeon left the enlarged nodes behind?
Even before I learned that it is only after surgery is long over that the pathologist can make a final determination of the health of our nodes, I would have absolutely panicked if my cancer surgeon had told me I had enlarged nodes that he had decided to leave behind, and, believe me, I would have stayed in a panic until he went back and hauled them out.
I'm not in the medical field, but I believe your surgeon made the only professionally possible decision regarding enlarged nodes. Where she failed you is in communication. I gently suggest a conversation with your surgeon. Anger, even fury, is perfectly OK. I'm sure all our surgeons are used to us beating on them (I'm not exactly innocent on this point either). Afterwards, you still might want to post your complaints about this doc, but at least you will have more accurate fuel for your fire.
Recovery is indeed far more than physical. I suffered from PTSD for a year. Well, longer, actually, but far lessened. Anger, fear, sorrow, etc., etc.,etc., and etc. are all normal reactions. Do feel free to vent and fret right here. We've (mostly) all done it in our turn and stay here to offer support to one anothe, whether right after radiation, or years later.
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