After Radiation
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Hi everyone! New to this thread, I finished rads two weeks ago. Have lots of energy back, no problem iwth post rads or nothing much during rads, feel lucky there. BUT...I keep watching for swellling. sometimes I think I imagine it, then I ask someone they think one hand might be bigger, I don't know. I may just go this week to have it checked to be safe. The one thing I do have, and didn't have at all with chemo, just started a week after rads is joint pain through out my body, both sides, usually starts at night, could this be from fatigue? I do have arthritis is my knees (bone scan showed that) but have never had any problems before rads. Again, many have said it, the gift that keeps on giving.
Great to have this thread, nice to see some familiar sista's!! Rain not suppose to stop all week, think this weather would give anyone joint pain!!
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Kantelope I got to meet Althea from the natural girls thread yesterday so that was something good. And 3 of my little friends from Church got baptized this morning at church. I could add some complaints but gonna keep it positive
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msjag - Welcome to the thread. Granny had a great idea when she started this. I can't help with the joint pain you are having. I did not have that - just horrible fatigue. I do have the joint and muscle aches since I started Tamoxifen. I know someone else will come along and help.
Sherry - Glad you are doing good today.
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Hi Gals! Princess Kantalope.....I must come there, & read you this long article, to maybe help put your little mind at ease..... Did you tell me that you had Edema, & not Lymphedema? I know they sound similar, but they are actually different. I think your Docs told you this....
I just want to take a load off your mind, & listen to those Docs....They will help you treat this. And maybe quit stressing about something, honey, if this isn't what you have..... I mean Edema is a bitch, but not with you after it is cured. I have Edema in my one ankle....(I have 2, but the other one isn't bothered.
) So I have ONE swollen ankle, always, but not as bad, since I wore compression stockings, & quit Tamoxifen....go figure! So these are the articles I copied:Lymphedema should not be confused with edema arising from venous insufficiency, which is notlymphedema. However, untreated venous insufficiency can progress into a combined venous
Edema or Lymphedema
Not all swelling is lymphedema, some is edema caused by an underlying medical condition. This section includes articles that will help explain the difference.
If you have unexplained swelling, it is crucial for you to work with your doctor to find the underlying cause. Don't assume it is lymphedema. You must get treatment for the condition that is causing your edema. This is known as pitting edema.
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Edema - Definition and Discussion
Simply defined, edema is the abnormal pooling of fluid in tissues or the accumulation of excess interstitial fluids. It can be throughout the body which is referred to as generalized edema. It can also occur in a specific region, part or even spot, then it is called localized edema. The condition may be caused by increased pressure in the capillaries, blocking of vein, varicose veins, thrombophlebitis, venous obstruction, pressure from casts, tight bandages, congestive heart failure, kidney failure, liver cirrhosis, overactive adrenal glands, steroid therapy or inflammatory reactions.
Edema may also occur because of loss of serum protein in burns, draining wounds, excessive bleeding, nephrotic syndrome or chronic diarrhea. It is also seen in malnutrition, allergic reactions.
But perhaps the most common edema experience by even millions of healthy individuals is inflammatory edema. This type of localized edema is a one of the body's most immediate reaction to trauma or injury to tissues. This can be caused by sprained muscles, torn ligaments, insect bites, cuts and abrasions. It is also caused by venous thrombosis or sudden vascular blockages. Joint swelling caused by arthritis is another common type of localized edema.
The treatment of edema is directed at correcting or curing the underlying condition. Once this condition is resolved the edema dissipates. If this does not occur than it can be treated with diuretics and/or decongestive massage therapy. In the situation of edema caused by vascular anomalies, support compression hosiery may be worn. Treatment may also include dietary changes which focuses on a low sodium intake.The symptoms of edema include unexplained weight gain, ring or shoe tightness, facial swelling or puffiness, swollen arms or legs and abdominal distention. Tissue changes in early edema are known as non pitting edema. When pressed with a finger, there is no indentation. Also, with edema the skin of the affected area may appear stretched and or shiny. In long standing edema, the tissue will experience (as with lymphedema) what is known as pitting edema.
Incidentally, all edemas used to be known as dropsy.
Infections can be a complication of both edema or lymphedema. It should be noted though, that edema may be caused by infection wheras in lymphedema infections are a direct complication of the condition itself. Also, with lymphedema, the affected limb is known as immuno-compromised and infections generally are much more severe and readily develop into cellulitis, or lymphangitis.
Lymphedema however is a disorder where lymph collects in soft tissue (sub-cutaneous) because damage to the lymphatic system. This can be from a genetic malformation (hereditary); infection or injury in utero (congenital); a side effect to a developmental disorder of the lymphatics (also a type of hereditary lymphedema), or by removal of lymph nodes for cancer biopsy, injury, trauma or infection of the lymphatics, infection caused by a parasitic infection or damage done by the crushing of the lymphatics in morbid obesity.
Since the destruction or injury to the lymphatics is the underlying cause, there is no cure for this swelling, only treatment and management. The preferred treatment for lymphedema
is decongestive therapy. Other treatment modalities may include surgical management, and compression pumps. The use of diuretics should not be used and in fact may cause additional complications in lymphedema.The general symptom of lymphedema is the swelling of an arm or leg unexpectedly and or without explanation or may suddenly appear aftertrauma, injury or lymph node removal for biopsy. In early lymphedema, when the limb is pressed with a finger, it will leave an indentation. This is known as pitting edema.
NOW! Can I just put in here I don't feel good today! I am just trying to breathe without coughing, & get over this Bronchitis & Asthma.... So that's my main beef for today....DANG! Maybe if we could just all get together & drink..... I mean eat dinner....or WHATever!
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Chevyboy - To hell with the food, let's drink girlfriend.0
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JO JO--you had me worried.hope next week will be a betta one.missed you and glad your back.
MSjag--welcome---sorry you have to be here but we do have some fun and dont always talk about AFTER RADS...measure that arm and if its even a little bit bigger make sure you see your dr.early lymphedema/edema is manageable as you can see what chevy posted.
Sherry----Its about time for some positive words here.YAY sista
CHEVY---i love you for that post.i keep reading it over and over again.my RO and PT said edema and im listening to them.goin to onco on wed.lets see what she says.Im still wearing the harness,doin the exercises and stretches and the swelling is goin down.Went to a communion yesterday and danced my ass off.had a great time but my body is crying today..it was worth it.
huggggs to everyone.Happy Sunday.xoxoxokantalope
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Hope everyone has a great week! Hugs to you all!
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Since this is the After Radiation thread - Granny asked me to share this information with everyone. On month after finishing rads, I started having a burning/stabbing pain in my boob. All tests ordered were negative. Surgeon could not find the cause. I am an avid internet searcher and I came across this today. The pains are a result of nerve damage from radiation therapy. It is called "Post Breast Therapy Pain Syndrome." It is very much underdiagnosed and properly treatedd since most doctors don't know this syndrome exists. There is a very good website that you can read the information yourself. I don't know how to paste a direct link but go to: cancersupportivecare.com. There are several medications that can be tried or one can have a nerve block done. The damage is permanent and can crop up anywhere from months to years after finishing radiation. I have printed out the information and am taking it to my next onc appt.
If any thinks they are crazy or told the pains are all in their heads - take this information to you doctor and challenge him/her.
Just thought I would pass on this - I found it to be very interesting.
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Jo - mine is still pink and itchy inside, with some shooting pains occasionally, does seem slowly to be getting better...thank you for the information. I agree, this stuff is not just in our heads.
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the only thing in my head right now is i thought after rads we all were gonna be fine.have our old life back again....everyday is a constant reminder that THIS IS NOT OVER YET....But its gonna be....it better be....AND WE ARE GONNA MAKE IT BE.
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Amen, Grannydukes!!
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Jo - Love the pic and good idea, Good Night Ladies...tomorrow I have to get new tires on my car so will be back late...gosh so expensive. I need all 4 all terrain tires for my SUV, whadda hassel! Okay, Good Night and Sleep Tight all! See You tomorrow!
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Hi Girls,
I've not been on in a while but I have tried to read as many of your posts as I can. Looks like you are all thriving in one good form or another.
I was going to post a question then when reading through the posts, lo and behold jo 1955 answered it for me! Thank you, THANK you, THANK YOU so much jo 1955. You have been a mind/emotion/mental stability saver today!!! I finished 16 rounds of chemo Feb. 8, and 33 rounds of radiation April 15. I have been having deep tissue pain and stabbing pain in the operated breast all along since my Aug. 9 2010 surgery but more so since radiation ended (lumpectomy, my Surgeon called it partial mastectomy because she took extra wide margins).
I have checked and rechecked with breast self exams and my RO just checked it last week and he said everything was fine. He and my surgeon don't agree on one issue and I think he is off target with his opinion (and we all know that sometimes we know more then the Dr's about our own boob right?
) After reading jo 1955's post above where the report states that this kind of pain can crop up months to years after finishing radiation is right in line with what my surgeon was trying to tell me. She told me that radiation was NOT a walk in the part and unfortunately the affects of it can be permanent and last a lifetime! I didn't know for sure what she was talking about at the time but I do now. My RO, he says the only affects from radiation are skin effects and some "mild" fatigue!!? I thought he was a bit daft at the time but he kept insisting no, only skin is affected by radiation. Well, then what explains it when he told me last week that the breast tissue in the radiated breast was still swollen? He's silly! Anyway, even though it is permanent this "POST BREAST THERAPY PAIN SYNDROME" information is a HUGE relief to me. At least I know I'm not the one who is nuts! Other then that, it is slow to come back, the energy. I'm trying to "declutter" this house and it is going so slow (9 rooms with closets in every room but the kitchen). Plus the end of the week and over this coming weekend I have to keep my son's 8 year old Golden, Jenn. She's a great dog so she won't be any trouble but when she's here I don't get anything done but play with her!
It's finally done raining in Illinois and the sun is out sooo, hopefully our temps will climb back up and we'll get through this cold snap. Sun always makes you feel better, anyway it does me. Garden is up and looking good and I can't wait for the fresh veggies. We live on garden and grilled meats when it is the season. We both can live without potatoes and other stuff if we just have garden produce and grilled meats.
I watched a movie on TV early this a.m. (the Hubs is on early shift at work and we have to get up at 4 a.m. for now) and it was a hoot. It has Dennis Quaid in it about Jerry Lee Lewis called "Great Balls OF Fire." Kind of creeped me out. I knew Jerry Lee was a character but it still creeped me out unless it was the acting. I think I have seen Quaid in better movies.
I'm going to "try" to be better about posting to you gals if you'll have me but this house is going to have to come first. I'm sick to death of the clutter. It's not been touched since well before I got sick. It's not been touched other then the quick vacuuming/dusting since I started keeping my infant (who is now 3 1/2 and in a structured daycare in town and I won't be taking her back other then the occasional day she'll spend with me) grand daughter in Feb. 2008. I'm throwing out things I probably shouldn't! This happens when I get in one of these decluttering moods.
Have a great first of week Ladies. Love you all bunches.
Love,
Juanita
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Juanita-welcome to the group we have a lot of fun on this thread
Jo thanks for posting all of that. As you well know I also have it. I am lucky that my BS did acknowledge my nerve pain and is trying to be proactive in helping me with it. My MO acknowledged the pain and that it was permanant but did not really offer me any solutions. Then I went to the BS and was diagnosed and we are taking the treatment one step at a time. Then I went to the RO and he did not discount that radiation could be a factor in it although he said nerve pain from rads is pretty rare but does happen. So since the BS is treating me for it he felt is was better for one Dr to be treating and not two Dr.'s. So at this point my BS is my main person for this nerve pain that I am dealing with. In my case I think it happened with the SNB surgery first and then I think the radiation damaged it further.
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Juanita & Sherry - I owe it all to Mr Google. I knew I was not crazy and there had to be an explanation. Now trying to convince some of the doctors - that is the next battle. This should not be this way - guess that is where the term "fighter" comes in.0
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well ladies you will need to sign me up to this post rad pain club as I, too have had severe pain on and off for 3 months (since rads ended). sheesh, no offence, but enough already!
Teklya
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Girls maybe we need a pain club!!!!!!!
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JO JO----thank you thank you thank you soooo much for posting that info.not mr google but you did the research for all the sistas...you and CHEVY have been a huge part of this thread...sistas helping sistas...luv ya both.
Juanita ---welcome back sista...come visit more often.i know its a crappy place to be but we all need each other.huggggggs to you.
Teklya---you are in this club....are the shingles gone?i sure hope so
Sherry-After reads should be called THE PAIN AFTER RADS.I dont think there is one sista on this thread who doesnt have any pain.this suks.really.I would love for someone to pop in here and say ME i dont have any pain since the rads....we need to know if anyone escaped the horrors of the rads. A WALK IN THE PARK MY ASS.The drs say you only have to worry about burns.yea right.and i believed them.
im sitting here massaging this boob waiting for this harness to dry,with the fan blowing on it.ha.waiting for a call back from this jovipak that is supposed to find me another harness.
As teklya says just breathe....huggggggggs kantalope
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Granny I want to throw up anytime someone says rads was a walk in the park. yeah right and I think I had a very good Dr. whom I trust, but it was still very hard on me then and with all this pain it is not much easier now.
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Chabba and Jo1955: Please post how the mammo's go...mine is scheduled for June 14 and I'm getting nervous already.
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je I just had mine and it really was not all that bad. I asked the girl to be very gentle on me because of all my pain and she was. After it was done she took the films to the radiologist and had him look to make sure it was what he wanted. He said they were and that I was clear nothing to worry about. I had even specifically asked them to check a spot from last year, which he did and gave me a verbal that there were no changes.
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je1957 - I will definitely post here when I get the results. Yes, the anxiety is starting to build every day. The one thing I fear the most is not hearing anything the same day. Last year when I had the compression mammo and US done - it was almost 2 weeks before my GYN called me to schedule a biopsy. I was so stupid a year ago, I never thought breast cancer - no family history - even when I saw the spot on the US, I thought is was a cyst.
Sherry - The imaging facility I go to does digital imaging vs films. I should be able to look at the computer screen when I am done and at least get an idea. Will have to wait and see.
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YAY Sherry----finally some good news....
im still waiting for that damn bra to dry...the weather in Nj is damp and ugly...it will probably take another day till i can put it back on...well i found an old tight bra thats just gonna have to work.been on the phone all day trying to get just one more but by the time i got phone numbers the surgical places were closed.im hoping by tomorrow i can find something.i saw one on the internet that cost $229.50.YIKES.and they are not sure if medicaid will pay.gee i forgot to thank you bc...another gift .
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GOOD MORNING LADIES! HOPE YOU HAVE A GREAT DAY.
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That's great, Sherry - so happy for you. I will ask them to be gentle with me...and they better be!
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Well today I was making arrangments with a new BS because of reconstruction and my current one does not go to the hospital that the PS goes to. So while I was talking to the new office there were several things that they wanted me to bring with me one of which was my radiaiton summary. So I called the RO office and had them fax it to me. Boy was I supprised when I read that I did quite well with only mild irritation and that I was treated with two things that were never offered to me and one probably would have helped me. Most of you don't know but Jo and Granny know that I had a rough time. I know there are others that had it worse than me but I was definalty not mild. The two things they gave me at the end were lidocaine to numb my raw areas and loritabs that I was on 24/7 for two weeks because I was in such intense pain. And his summary said I was in good spirits (ha, on drugs). Now if you ask my family and friends what they think it would not be what the RO wrote. Can't decide if I need to write a letter of correction to the RO. My new BS is going to think I am some quak with my side of the story. I am really sick of Dr's.
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Sherry, I think you should! Sometimes we just have to take matters in our own hands! Like when I lost my hearing to Tamoxifen, my Oncologist had never heard of this, & was VERY indifferent. I dropped her, because she did not believe all the information I sent her.
So I am now going to my Radiologist, because at least she has empathy. You should write it all down, I mean how You experienced radiation, & if you are going to continue with your Rads Doc. And also, copy it for your surgeon...just for your records!!!
Just keep records & ask for copies of all your tests & procedures. Maybe you will never need them again, but you just might, for reference.
Talk to you gals later! xoxoxoxoxo
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Sherry - I wonder what mine says!!??0
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Chevy I do have most of my records the only two things I did not have were the RO summary and my sugical summary. I have received the RO obviously and waiting for the sugical summary. I put together a nice notebook with all my records. It came in handy when I went for my yearly GYN appt. I let her look at everything and make copies of what she wanted.
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