After Radiation
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Gina,
Thanks for posting the article.
I got the frozen shoulder from rads and my RO doctor denied that it could happenLOL. She said radiation is local to the affected area and the shoulder was too far away to be affected. I laughed and said, "do you remember the song ....the thigh bone is connected to the hip bone and the hip bone is connected to......etc etc. so everything close by will be affected."
I needed physio for my shoulder and my physiotherapist said she gets a number of women needing physio after rads. She went on to say, that if only the RO would give women simple exercises to do they would not need physio after rads.
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I haven't had my RO or MO dismiss any of my concerns, thank goodness. When I had my first appt with the RO he even told me radiation can cause secondary cancer. He was very honest, but with my tumor size, triple neg and all, I didn't want to turn away.
At my first follow up after rads (4 weeks out) he asked me if I was having the stabbing pains that can take you to your knees....of course I said yes. He never said a name for it, but he said almost every breast cancer patient says that.
I thought the article was interesting only because it puts a name on something many of us are experiencing, validation I guess.
I had chemo, then surgery, then rads - I often wondered if that's why I have so much swelling etc. since surgery was so close?
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Gina I read that same article and it is nice to know we are not all crazy. I went for my 3 month MO appt. This was the first time we have talked about my BMX. I swear all the info I get gets so confusing and frustrating. He tells me that since I already had rads he hates to see me go through a major sugery like MX and reconstruction. Especially when I told him I was not a candidate for implants and will have to have diep. He says I thinks I should have had the BMX in the beginning that with my tumor not showing on mammo and not palpable that I was a good candidate but now he would like to see me get scanned every six months for the rest of my life and keep a close watch on and try to work through my pain. But if I decided to go ahead with the BMX he would support me in it. I am thinking what the heck you thought I should have had it to begin with so what is the difference now. Anyway I really like him and he was not my MO to start with. I am still not comfortable keeping the boobs and DH and I talked after I got home and we both feel it is the right thing to do. So of course this was my six month time to have a MRI and I told him I could not afford the 2K it would cost me and I was not going to have it done. I told him I would have another mammo which means nothing to me and an US. So he was OK and understood how I felt. He wants the mammo even though he agrees they are pretty worthless on me but he said you never know what it might find. Also I told DH every time he does a breast exam he tells me how lumpy my breast are. How do you know what lumps are good or bad? I can never tell all I feel are lumps. Sorry I am winded just a bit frustrated. Oh and he ordered PT on me since I continue to have problems and I am active in yoga and my RO did give exercises which I do but I am still having muscle issues.
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Oh Sherry, the things we go through. Vanity left us so long ago didn't it. What we thought we couldn't live without, we figure out. I might be in your same shoes one day.
Sending you lots of hugs.
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When I saw my RO a month after completing 33 rads, I told him my aches & pains & he agreed they were caused by radiation - smiling, he said he'd see me in 6-months. I just saw my PCP Wednesday & he offered cortizone shots for my shoulder & knees - at least he offered to do something about the pain!! I actually told him these new pains weren't responding to the pain meds I already used for my osteoarthritus knees - now I see in that article the same statement! Gives me some hope that someone out there in medical-land is finally seeing the light of our side-effects. Gives me a little more hope!
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mostlymom - OMG! A RO that admits there are SEs from rads. Most of them will deny that there can be side effects. At least you are getting some relief.
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mostlymom - did you go to RadiantCare? That is who has the clinic out here. They send out from lacey a different rad onc each day. I saw my assigned onc every Thursday at my regular treatment time and was always able to see a Dr within a 1/2 hour of my regular treatment time when problems or questions came up. All of them recognized and discussed possible side effects. I was also warned about the most common SE's.
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anythng i ever learned about S/E i learned from the sistas....HERE....I dd all my research here cause i waited a long time before i made up my mind about doin the rads.
Im in Brooklyn now on this shitty puter that kcks me on and off constantly....I was on facebook for about 10 min.and lost it.Thanks Sherry and Gina for understanding how nuts i am on facebook.lots of people do not know i suffered wth bc.and i dont want them to know either.BUT do want the pic of the TEXAS sistas with the pants sooo IM COMIN OUT OF THE CLOSET!!!!!.
will try to keep up with all of you when ths puter lets me....keep the home fires burning.ILL BE BACK. hugs K
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anythng i ever learned about S/E i learned from the sistas....HERE....I dd all my research here cause i waited a long time before i made up my mind about doin the rads.
Im in Brooklyn now on this shitty puter that kcks me on and off constantly....I was on facebook for about 10 min.and lost it.Thanks Sherry and Gina for understanding how nuts i am on facebook.lots of people do not know i suffered wth bc.and i dont want them to know either.BUT do want the pic of the TEXAS sistas with the pants sooo IM COMIN OUT OF THE CLOSET!!!!!.
will try to keep up with all of you when ths puter lets me....keep the home fires burning.ILL BE BACK. hugs K
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I have a quick question. I just got my first cold/flu from my students. This usually doesn't happen until later in the year. My last boost was July 5th. I am still somewhat tired and this bug has hit me hard. Could this be from rads taking its toll on me? I never get sick until late January or Feb. It sort of scares me to think I have to worry this much about a stupid cold. I don't want to blame everything on cancer but....
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dolphin - You have to remember with surgery and then rads, your immune system has been compromised and it is more susceptible to germs and other things. So you may get sicker sooner and more often - sure hope not- but it is something you will just have to keep an eye on. If you are taking Tamoxifen, you really need to ask your MO what cold medicines you can take. There are some that are no-nos such as Benadryl. You can also check drugs.com - just type in Tamoxifen drug interactions - scroll down the page a bir and you can type in even the OTC drugs.
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Granny~welcome out of the closet! It's like running naked on your birthday and you get your 20 year old body back! Ah doesn't that cool wind feel good! lol.
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Thanks Jo I will do that. With all the parents sending the kiddos to school sick I just had a feeling. Thanks again for the website...
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Gina - You crack me up - I'm sure granny is laughing too.
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Here is the link to the article that was written about the Texas get togther last weekend in San Antonio. The link is also posted on facebook.
Traveling Pants sisterhood provides support
www.mysanantonio.com
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Gna,Gna,Gina,I am cracking up.....my 20 yr old body left me way before i was 20.ha.I had my 2nd. baby at 20.. but im still a little shaky about comin out of the closet....ha. i feel so invaded.To me fb s like DEAR DIARY...and i hate that BUT for this special occasion i gotta do it....i want the picture,i need the picture,i love the picture and i love all you sistas.SOOOOOOO IM COMIN OUT OF THE CLOSET!!!!!! pLEASE SOMEONE POST THE PIC.WITH THE PANTS ON MY FB.......
luv luv luv my sistas.where the hell would be wthout all of you...huggggggggs K
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Ok granny they are there, prepare yourself for phone calls or facebook "what? i didn't know", and then just tell them that's ok, I'm one tough granny, I 've got his under control!
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yes they are on my wall and my friend already saw the(im in her house now)Im ready(I think) should take a whle but im ready..
you gals will be the talk of fb for a long time. I sure hope they make a movie about all of you....maybe that will get the FDA and/or the FTC to take notice and find a damn cure/vacine...then you all would be famous.yay!!!!!!!!!!perfect timing.PINKTOBER.
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Oh granny, Timothea, 28 and fighting stage 4 with two kids under 6, she's the hero....if the world would just listen to her for a minute - those scientists and doctors would have a renewed strength to stop this epidemic.
Take a breath today, life is life no matter what we wake up with, and today you are waking with your own renewed strength!
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I dont think i know her but my heart goes out to her.yes she and all the stage 4 bc survivors have a special place in my heart.It is just not fair!!!!
I became friends with a young girl named Brenna stage4.she was on the boards until sept 19th.then gone.i posted a thread looking for her.over 100 people looked at that thread and no one knows anything.THAT MAKES ME SICK.
I think its time to change the subject because i get sooo emotional over this....
back to AFTER RADS. OK??????????
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You gals got me thinking. Like I told one friend, I have COPD and suspect that I am far more likely to die from pneumonia than BC. But I'll fight both for all I'm worth. I just realized that my DH knows how to access the friends on my phone directory (I think, I better make sure) and knows where my address book is but has no idea even of how turn on the computer much less how to access my e-mail contacts or BCO. I better make arrangements for someone to do that.
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ok, back to after rads, two feet in all at once! My boob hurts today....
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Gina I have said the same thing about Timothea she is my hero.
And granny coming out of the BC closet people will talk!!!!!!!!!!!!!!!
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Timothea is also my hero - she is such an inspiration
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Question ladies...........................out of rads 3 months..............had no problems with pains in the chest, ever, at all, during and after rads....................for some odd reason, when I take a deep breath I get achy type pains (almost like muscle soreness) in the upper part of my chest, in the middle, just above the center of my boobs......................the cough is awful, but then I also know that is a SE of Femara..............go to the surgeon tomorrow, but doubt he is going to know anything, but will tell him
Just wondering if any of you had anything similar.............it isn't a sharp stabbing pain, just a soreness everytime I take a real deep breath......................does the shit ever end.................
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Radiation pneumonitis
Radiation pneumonitis is the acute manifestation of radiation-induced lung disease (RILD) and is relatively common following radiotherapy for chest wall or intrathoracic malignancies.
This article does not deal with changes seen in the the late phase. Please refer to the article on radiation-induced lung disease (RILD) for a general discussion and radiation fibrosis for specific discussion of these late changes.
Epidemiology
For discussion of epidemiology of radiation induced lung disease please refer to the parent article : radiation induced lung disease (RILD)
Clinical presentation
The acute phase typically occurs between 4 and 12 weeks following completion of radiotherapy course, although they may be seen as early as 1 week, especially in patients receiving high total dose and/or also having received chemotherapy 1-3.
Symptoms typically include 3:
- cough
- dyspnoea (exertional or at rest)
- low grade fever
- chest discomfort
- pleuritic pain
Ducky I got this off the web http://radiopaedia.org/articles/radiation-pneumonitis
But my RO and I had a lengthly discussion about this during my last few weeks. I swear I had this, but he said it doesn't present until after radiaiton - weeks after - if you get it.
Might be worth a call to your RO.
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Maybe you have bronchitis...another possibility from what you're describing.
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Gina - I am so glad you posted the articles. I had difficulty after rads and even had a 3 phase bone scan done which showed "lung changes" from rads. My BS ordered the test since we were really looking for something else and this showed up. I was sent to a lung specialist who confirmed the it and he called it lung damage. I did see my RO and told him about the test and the specialist - my RO was such a friggin moron, even with all the documented evidence he still denied it could be from rads and that radiation pneumonitis is rare. What pisses me off it during rads he kept talking about it and if I had flu like symptoms to let him know. I really want to print out the information you posted and shove it up his ass. I am okay now and not having any difficulties - whew! maybe I should have gone to the bonfire and thrown all this in - I do feel so much better now.
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Jo-thanks for the link for the article....also, thanks for mentioning about asking my MO about what OTC I can take with my AI....my MO has never said there wasn't anything I couldn't take, so I've just used what I always have.....yikes!
Gina--thanks for the articles...you are so good about posting such great information!
Granny...hope you are having a blast sister friend! We miss you! I've been looking for you on FB and can't find you!
Ducky...I hope whatever it is resolves itself and you are feeling better...
Dolphin--it's almost impossible to not get sick when you are around youngins, isn't it? I always carried around antibacterial in my purse...and still do today...
Weather has been incredible lately...(after 2 days of rain)...been busy here getting all my Halloween stuff put out..I LOVE Halloween...wish I was a kid again...
Love to you all!
Tori
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Jo..........I had no problem with chest wall, or intrthoracic malignancy, unless a 1.1 cm tumor on the right boob, for which they did a lumpectomy, is considered interthoracic..............I will ask the surgeon tomorrow...............this is such bullshit.............it goes from one f/n thing to the other.................I'm sick of all the alments...........one right after the other......by the time I finally feel like myself (which I doubt is ever gonna happen), I will be ready for the undertaker..........................gonna go find the Vodka again..................
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