Radiation recovery
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2 more angels Jackson and James got baptized today.
Diane
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Congrats on the babies baptism. They are getting so big already! Adorable!
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Thanks April. Yes they are. Hard to believe they will be 2 years old in September
Diane
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Gosh how time flies, 2 already!
Had my first ever lymphatic drainage massage. Over did it with driving tractor for 5 hours & vaccuming all 2100 sq ft of house. I usually do one floor, wait a day, then do the other. But the massage worked, feels much better.
Made all my appointments.....Surgery next Wed June 21, head CT scan July 4th, mamo, chest x-ray, abdominal & pelvic ultrasound July 7th. Hate this time of year. Too much to deal with emotionally.
Take care all. Fran
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You have a lot on your plate Fran. Hope all goes well with all your tests. It is unnerving to say the least.
I had my mammo in May so I can relax for now. One of the ladies in our group at church had a pet scan today. Her BC came back last year. It's in her hip area and the lesions are scattered so they couldn't do Rads but opted for a chemo pill for her 3 weeks on and off. She is in Ohio until December and goes to the Cleveland Clinic so she is in good hands. Won't know the results for a few days.
You clean like I do normally. Our house is the same size. DS occupies the upstairs for now so I leave the cleaning of his room to him. Usually I just shut the door so I don't have to view the Bermuda Triangle. Haha
Take it easy girl and keep us posted.
Diane
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Anybody get a red flush in the radiation area. It's over a year later, what could it be
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Marijen, I used to get that for several years after rads. Usually caused by sun exposure, even through a shirt and bra, or a mammogram would cause it, or excessive heat in the shower. The sun exposure was generally the culprit for me...even thru the windshield of the car, a bra, t-shirt and overshirt. I used to carry a towel to cover up. That skin is still tender. That said, if it's continuous and doesn't stop and you'renot out in the sun be sure to just check bases with your RO or MO.
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Mostly sew, thankyou. It did happen when I was out walking in the sun. Had two sweaters on, it got warm, took one off. It looks better in the morning then after a shower it's here we go again. This is my first real flare up. Will it calm down or stay like this. I wish I'd never done rads
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Hi Marijen, it will get better. You won't always do this. I no longer have the problem at all which is saying something as reactive as my skin was. Be sure to still use gentle soap, cooler water or at least not steaming hot, and also continue to use your cream. I do think this is sun (I.e. Radiation) induced.... but a call to the dr. would put your mind at rest. if it starts hurting definitely call the dr. just to be sure.
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I'm thinking of getting some of that space material to cover up while I walk. Thanks for the help this has got me stressed out. Just last week I thought I was out of the woods, now it turns out my thyroid is beng attacked by my immune system and is slowly wasting away. Then three days later this huge flush. My DIL says we all have something we struggle with. Wise words.
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Space material would be interesting 😉 Actually I know about thyroid problems too.....had mine removed 30 years ago due to pre-cancer. Taking thyroid supplements is really easy...no side effects, theyjust help you keep on an even keel. I think several on this thread are on it. And of course, as we age we generally need a bit more thyroid....so stay with checking that problem out and post a picture with your space blanket....
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Maybe it will be a tank or tube top worn under my clothes, but space blankets keep you warm right? Then that wont do.... would spf 50 help
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spf 50 should help, but the long sleeves ones are a bit warm. A place to start though..
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They have short sleeved ones at Amazon. Thanks for your help
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Marijen, I have Radiation Recall Dermatitis, RRD for short. My red flush never goes away. I have to wear 100% uv protective tops when outside along with high spf sunscreen. Good luck with it all. Fran
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Thanks Fran, where do you get your tops and what brand do you prefer. When I see the doc I will be informed! RRD!
Do you live in a sunny place or stay outdoors a lot
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I did a search on RRD and it seems that a lot of medicines can trigger it. None of which I take
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marijen, I'm near Edmonton, Alberta Canada. Yes I have to be very careful about any antibiotics that I take. I use Solombra shirts. They work well & are vented well. I'm on an acreage so I'm outside usually everyday. I try to stay indoors in the afternoons. My Dr originally thought I had Inflamatory breast cancer but they did a punch biopsy & it came back as RRD.
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I had a punch biopsy last year when it first happened. I don't think my doctors know what RRD is. Thanks for the advice on the shirts. It's discouraging that this doesn't go away
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Fran the Solumbra clothes are beautiful and a good collection. Thanks again
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aaarrrggghhh! Like I'm not under enough stress...Some other Dr will be doing my surgery. Apparently mine is not going to be available. I could have postponed again but I want this over & done with!
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70charger I read farther back and you made a comment where Radiation Recall recalls the radiation to work again? Do you mean it's killing more cells? Good and bad if there are any bad cells? How bad does RRD get if it's not treated? Can it go to cellulitis? I already had that. Does MLD help too? I doubt my MO knows what it is btw. I'm thinking of calling this am for more PT. Took 20 visits to resolve last time.
I tried to figure out what kind of surgery you are having. Sometimes things work out better when there are changes.
Mostley Sew what thyroid supplements do you take? What about iodine? I have anarticle to watch for thyroid cancer five years out from radiation. Thanks for everyone's help. I am no better today and some edema Don't have my spf clothing yet, on order.
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Charger...that is upsetting to have a Dr. change mid-stream. But I expect this surgical Dr. has great qualifications and maybe even has done more of these surgeries than your Dr...... at least we can hope. Keep your chin up girl, we're all rooting for you
Marijen...if you need thyroid, identified by the TSH and free T4 blood tests, then you will be prescribed some sort of synthetic thyroid (syntheroid, levothyroxine etc.) These are easy to adapt to your body's specific needs. There is also the old Armour drug, which is thyroid made from pigs or something. People used to like this because it was the only thing available 50 years ago, and it was natural. That has been replaced by the synthetics because the strength of the Armour became so variable and was hard to administer. I guess people still take it, but other than when my Mom was changed over probably 25 years ago to synthetics I don't know much else about it. I, personally, would not mess with taking iodine, especially if not under a Dr. prescription. That said, I did have to take iodine due to a goiter that developed after my thyroid surgery. Apparently I wasn't getting enough iodine in my diet. I had mistakenly used my pickling salt (without iodine) for regular salt. For my particular suppliment that I take now, it's syntheroid and also Cytomel. My body quit making T3 from the T4 (synthetic) I was getting, so now I take both.
As for thyroid cancer after rads.....I don't know much except I'm sure it depends upon where your BC tumor/radiation was. If you had lymph nodes involved, you probably had more extensive radiation and closer to the thyroid gland and yes you can get thyroid cancer from radiation. In my case I got it about 30 years after I was radiated for tonsil problems as a 3 year old. Thyroid cancer, which as scary as any other cancer, seems much easier to treat (remove the gland usually), and generally doesn't metastasize. Naturally I had long talks with my RO before undergoing any treatment because I was considering mastectomy instead of lumpectomy and rads. If you're concerned, talk with your primary care Dr. and get tested for thyroid levels and go from there.
Your inflammed breast sounds painful. I'm glad PT massage got rid of it. It almost sounds more like lymphadema than anything else. That is a hard one to get rid of, and does require you to do daily massage. I had to go thru 2 stints of PT for lymphadema and edema and now, 5 years out, it's all settled down and I don't massage any longer, although I do have edema which seems permanent but is not bothersome. So, yes, call for another round of massage and make sure they teach you how to do it.
Please excuse all typos and "auto corrections" this note is so blasted long I don't have the energy to re-read and correct
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Mostly Sew - I know what you mean, I usually keep my posts short due to lack of energy. I have been on levothyroxine since about 2000. It annoys me that I saw a Thyroid Cancer Specialist, my MO insisted, and he didn't do any tests at all. Just looked at the report, maybe the images. Said my thyroid was autoimmune, I suppose that means Hashimoto's and that my thyroid, can't think of the word he used, was being absorbed by my body. Come back in January. I may need a second medicine like you have but how would we know? Without testing. Anyways, my last TSH was .41. I like it that way. It went up to 3.21 after radiation - did I forget to take some pills I don't know.
I have acquired angioedema of the breast due to radiation with TELANGIECTASES AND MIXED DERMATITIS, that is small red blood vessels. No arm lymphedema. All was well from Feb. until now. Just went out for a walk with spf 50 on, that seemed to help as it isn't worse at the moment. It's going to be 87 today so I feel like I'm stuck inside until tomorrow. Maybe heat more than sun? Just trying to figure it out like we all are. I should think there would be SPF 100 bras, but so far I haven't seen them. RRD seems to be unknown for most people?
Is charger in surgery today?
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Marijen...are you in California by any chance? We're having a heat spell also. Sounds like you've got the proper docs on board watching your thyroid. And yes, I've heard that the thyroid may get initially mess up due to rads, but that it usually settles down. Sounds like yours has. I don't know anything about RRD. Only thing I had was radiation induced inflammation starting on about my 3rd day of rads. And yes, I think heat increases the inflammation. Just like it does in my face...I get red when it's hot. Speaking of SPF bras, you could look for a swim suit top? Or perhaps a piece of SPF 100 fabric you could tuck into the top of your bra? Just a thought. Keep up the LE massage girl, it could help. Are you just 5 months out of rads? Makes sense to me that you'd have trouble your first summer.......several of us did.
I don't know if charger is having her surgery today.......but lets send healing thoughts her way anyway.
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Hi Mostly Sew, I'm in pacific northwest, but summers are hot. Radiation ended March 2016. I had trouble during but by the end I was fine. Two and a half months later I had DBC Delayed Breast Celluitis. Antibiotic, prednisone didn't work. They said it would go away on it's own, it didn't. Noone at the Cancer center had a clue or the BC. Went through two PTs that declined to work on it. Then I found a master at lymphedema in October!. Thus 20 pt appts later I was into Jan 2017. All was fine until last week. It was cool at the beginning of my walk but in 30 min I was warmed up. It says that RRD can show up two or three days later, but this redness was immediate, I could see all the tiny capilliaries too. Sort of scary. Used spf lotion 50 and that helped today. All this when I thought I was done with the med appts except for follow ups. Rads was supposed to start in Nov 2015. So it's been a year and a half plus. Still need compression too. I told my MO they overcooked me. She thought that was funny. I just don't think it was worth it. Who knows
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The SPF cloth is a good idea, I'll look online
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Marijen, yikes, you've been thru a lot. However, I think this will settle down. Whatever it is, you'll conquer this as you did the cancer itself. Just keep on doing the best you can and one day you'll look back and realize that breast cancer is no longer consuming your life. I do think another session with your LE specialist is in order. I know it took me 2 separate sessions with about 6 to 8 months in between (I no longer remember just how long). I started doing the LE massage as soon as I noticed any flare ups. I had truncal LE as opposed to LE in my arm although I would get some cording occasionally. Have you had your first mammo? Did that cause flare ups? Mine did for about the first 4, but I knew it was coming so didn't worry as much. It no longer causes problems, knock on wood.....
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I've had two mammos on that side but no flare-ups from that. However, CTs cause my lab results to wack out. No cording, no arm edema - that part I'm grateful for. I'll give it another week. Thanks for all your help MS.
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Interesting that the CT's cause you blood problems....they do have rads of course so I'd guess your body just doesn't like rads. High Res CT scans can have up to 100 times the amount of rads in a regular Ct, or so I've heard, so I'd sure avoid those. MRI's and ultrasound don't have any radiation...... they just don't show the same information either, unfortunately... Personally I've had so much radiation now that I'm on a quest to never have another CT scan, and very limited regular x-ray's although I so let the dentist x-ray my teeth every 3 - 4 years or they won't treat me.
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