Breast pain post radiation

JoniB

Hello everyone.  Happy Thanksgiving!  Hard to believe that I was diagnosed just around a year ago. I am the one that started this thread back in April and here I am in November still feeling breast pain in the radiated breast.  My one year mammo and ultrasound is next week and I am very nervous.  Since my mammo in July, I had three physical exams of my breast and none of the doctors felt anything out of the ordinary.  Then again, my breast cancer was not a lump - it was calcifications.  

vivre

After all most a year of dealing with the breast pain, post treatments, I finally found a doctor who figured it out. But not a regular doc, they kept sending me for all these dumb tests and perscribing drugs that were useless. I found a chiro who immediately said, "Oh you have costalcondritis". Just as Shirlann said. So simple! It is an inflammation in the chest area of the cartilage that connects the ribs to the sternum. So after a year of suffering. I finally have a solution! His physical therapist is doing a deep massage twice a week followed by ultrasound that is breaking up the tissue. The pain is gone and the ultrasound has also gotten rid of the hard lump caused by scarring from the radiation boost, at the site of my tumor. I am so relieved to finally have dealt with this nagging issue. So get thee to a chiropractor! Regular docs look at the internal stuff. It does not always dawn on them that a problem could be muscular-skeletal! Google it to see if your symptoms sound like this is the problem.

laureg

I thought after radiation was finished in September and I got a new job, that I would take the Aromasin for 5 years, finish my Herceptin and move on with life. Now I have noticed the breast pain and decrease in range of motion on my operated side. That breast is larger and heavier and I'm having trouble laying on that side. This started just 2 months after radiation, before I had no pain, just the numbness from the armpit incision. Just another reminder that it's not over. I do exercises, stretches and yoga and light weights because I refuse to give in to letting the pain get the upper hand. But I am disappointed.

amberyba

laureg, same here with the pain and swelling (heavier), for the first 2-3 months after rads, I couldn't sleep on that side, even told my doctor.  But I am able to sleep on the affected side some now.  I try to massage the affected side every night. I think it is helping. I have found that the swelling diminishes with a good nights sleep, and I don't have as much pain in the morning.

but no one told me that this could happen. I think the medical profession doesn't want us to worry about the possible side effects of treatment, so perhaps they don't tell us everything...which I am glad at times I don't know everything.

YUMMY

I'm just 2 months post-radiation and while I'm not feeling a lot of pain in my breast, I am feeling a lot of tightness in the muscles in my chest, armpit and shoulder blade area as well as losing some range of motion.  When I wake in the morning it seems to ache the worse.. probably because I haven't been using my arms.  I stretch it out multiple times during the day but am thinking that maybe some massage therapy might help.  Anyone have a simillar experience.  OH, I did have a TRAM with my mastectomy, so I am post reconstruction and do have some necrosis from that and have my revision scheduled for April. 

kawee

Hi, ladies.  I am 3 months out of RAD.  Dr. sent me to PT for arm stiffness and soreness.  After several massages and lots of stretching, the side of my breast has alot of pain and I have swelling under my arm.  They did an ultrasound and said there was no fluid.  Don't know what is going on.  I think the PT caused swelling and soreness and now am afraid to go back.  They are sending my breast surgeon the ultrasound, I'll see what she says.  Anyone else have anything like this?

joanmac52

Wow, I also am 4 months post rads, I also have pain in my breast, swelling and seems like my nipple can't be stretched any more or it will blow...lol. My breast is harder and the incision scar seems to be very hard. I am going to see my oncologist tomorrow, Gyn seems to think it is radiation treatment related he suggested I go see my onco. Mammogram in 2 weeks and I am scared to death of the pain. Glad I was able to get this off my chest lol

annadou

Hi Joan,Kawee and everyone elsewith this breast pain problem.

I have been complaining for ages that the pain is worse than after the operation also the numbness and the swelling and I think everyone thinks I am crazy.Then I developed lymphedema in the arm but its not confined to the arm its the whole upper quadrant of the body including breast and back so I think that all these pains are maybe due to lymphedema which creeps up on us slowly. The lymphedema massage definately helps with the pain and stiffness/tightness-but its time consuming and a real disapointment after all we have been through.ITS JUST NOT FAIR. that we cant seem to get rid of this cancer and its horrible secrets that the treatment brings. I know i should be grateful etc (and i am ) but sometimes i just get so fed up of having to think about it because something is hurting.

Be well all

anna 

Binney4

Kawee, lymphedema does not show up as fluid on an ultrasound because in lymphedema the fluid is not pooled, but distributed all through the tissues. If your docs end up stumped, a well-trained lymphedema therapist could tell you if this is the problem by simple physical exam. You need a referral from any member of your team to see one. Here's how to find one near you:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Arm lymphedema is uncomfortable, rather than painful, but breast/chest lymphedema is often very painful, probably because of the nerves in the area being compressed. Hope you get answers and real healing soon!

Gentle hugs,
Binney

Binney4

Joni, just wanted to add that our doctors are usually very slow to diagnose breast/chest lymphedema -- it's not an area they consider part of their specialty and they receive very little training in the lymph system as part of their medical education. Hopefully that'll change in the near future, but for now we have to be our own advocates for care. Here are a couple of lymphedema-information web sites:

http://www.lymphnet.org  (See their Position Papers)

http://www.stepup-speakout.org/

And here's a page about chest/breast (called "truncal") lymphedema:

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Hope some of that helps.

Be well!
Binney

Titan

I'm 3 mos. from rads...had it very easy for rads....but now  my boob is bigger and heavier...pain in node incision today...put some cream on it and it helped..still have sensations now and then...it's not a BAD pain..it is just there..had clean mammo on early Nov..plus feel myself up so I'm thinking that this is normal....as normal as having chemo/rad treatments can be..just a daily reminder of what we have gone through...  I don't like it..but I really think that this is normal stuff and really nothing to be concerned about

NativeMainer

I got radionecrosis and nerve damage pain from radiaion.  The dead tissue died off and got infected, the pain got worse and worse, the abscesses had to be opened up in the OR, then wouldn't heal (b/c of radiation damage).  I finally had a mastectomy to put a stop to the horror, pain, draining holes and pain.  Every doc I saw kept saying "That's unusual." 

Wizzy

Oh, I am not liking the sound of this.... have just been diagnosed with mucinal carcinoma and the current plan is for excision/lumpectomy with 3 weeks radiation. The lump is less than a centimetre (7mm at last count). I've had 2 previous surgeries for pre-cancer which didnt require radiation and they healed so well that even the doctors have to check my notes to decide which one was affected so I wasn't expecting this one to be much worse.... I'm not so sure now! I hadn't even considered burning! They told me it was "like an x-ray"... (makes note to add this to the list of questions for the breast care nurse tomorrow!!)

Titan

Wizzy....please don't freak..I handled rads very well...and except for a little tightness and some breast pain now and then it had been fine...seriously...what is the alternative?  We may moan and groan about the SE's but...until there is an easier way to deal with this..it is what we have..I would have chemo and rads a million times to get rid of those damn cancer cells.. I would like to be the same as "before" but it isn't going to happen...so I don't know..if you have been great with your previous surgeries chances are you will do well with rads.  Some people have had infections and so forth..yes it does happen but it may not happen with YOU..however it goes..we will be with you the entire time so feel free to rant...I don't know how old you are but the younger you are the easier it may be...My Mom had rads at 70 and yes it was hard for her...really hard..I had rads at 50 and breezed through it like it was virtually nothing

Wizzy

My alternative is a mastectomy/reconstruction which they suggested after the DCIS surgery - and yes, I realise I probably wouldn't have got this mucinous if I'd gone with it and I would probably have it all over and done with but, I made my choice based on clear MRI scans, all the available information and the opinion of 3 different consultants.

I wasn't whining about needing treatment just having trouble deciding which is best for me. I certainly dont expect the same as before but I've read about people having breathing problems and all sorts of horror stories.

Believe me, I really do consider myself one of the lucky ones... this is a tiny cancer, it has been picked up very early, the ultrasound showed no signs in the lymph nodes (tho' the consultant has explained that's not conclusive), I have a very patient, caring consultant and breast care nurse - and I will qualify for 2months sick leave on full pay.... tho' I may not be able to go back to my current role as its quite a physical job.

I am just useless at making decisions.....

Thanks so much for your support and for giving a more positive view on radiation...oh, I'll be 56 in June.

Titan

Wizzy...I know you weren't whining..but it is ok if you were..the decisions we have to make are .well...very hard...,reading on some of the other thread about breathing problems..I guess it just depends on where they are radiating....and...really..with today's technologiy..it shouldn't be a problem...

Since you are so young...you shouldn't have too many problems with rads..but you never know...I chose the lumpectomy with rads because I no way no how want to have my boobs cut off..it wasn't that I liked them that much...I just was freaking about the surgery and the recon..but so many people do it...rads plus a lumectomy equal a masectomy.  I realize that it is possible that I may have to have a masecotmy in the future..but hopefully I can avoid it...

I think though..with DCIS..it is spread more throughout the breast?  I am not not sure but I have read on these threads that masectomy is the more effective way of taking care of the cancer

Aliceann

I should not post on this message at all, but you need to hear all sides.  I burned badly with radiation.  Every time I had radiation (several) I burned to the point that they had to stop. I have some minor damage to my right lung from radiation as well, but it doesn't bother me.  It can be seen on the CTs.  There are gel packs available for bad burns which do help.  That SE does not help with pain in the bony regions of your chest wall.  My cancer stretched into that area and had to be radiated.  I agree with the person who advised about deep tissue massage.  I have that done weekly on an area in my right shoulder which was damaged.  Every one has different skin and mine was not pleased with rad.  Don't be scared, because the treatment suppressed the cancer involvement, but I am still here which is my goal.  

Aliceann

Necrosis is a word I recently heard from my onc.  I have a portion of reconstructed breast that does not have a blood supply and it is dying.  We are watching it to determine what the next course of action will be.  It has not been infected, but has scabbed over.  It looks like it is forming a new country as a matter of fact.  New development in the life of a cancer patient.  

Wizzy

Thanks Titan & Aliceann. Its one of those things where you dont know if its right for you till its done I guess. I really am not sure why I was so anti-mastectomy before... shock of it being suggested I s'pose plus the dread of being an in-patient (I work on a hospital ward and I would hate the idea of anyone having to do stuff for me - obviously I would be grateful but I dont like the idea of being on the other side of the 'care')

Whichever I choose (now thats a weird word to use really isnt it... choose, like anyone would really "choose" to have either... tho' obviously anyone would, given the alternative) I hope I will continue to make inappropriate jokes and deal with it with  determination. There are a lot of great role models here on these forums. Thanks ladies, best wishes, take care.

brandymanor

not being whinny

Wizzy

Well, after much discussion with my consultant, the oncology registrar and the breast care nurse we sort of came to the mutual decision that WLE and SLNB would be the best option. That was over 8 weeks ago and, most of the time, i feel i made the wrong decision - but, there you go. I was incredibly lucky as they removed "Gilbert" my 8mm mucinous squatter with clear margins, no node involvement, no sign of DCIS, ER+/HER neg so I didnt NEED a mastectomy.  I was fine with the look of it for the first few weeks but, I'm sure someones sneaking in and stealing a bit more each day now and its making me keep shrugging my right shoulder trying to get whats left into the right place - so, I'm thinking 'partial breast form' for the time being with a view to possible reconstruction in a year or so once I've had rads and check ups. I start rads on Thursday (8th)... which seems a long delay to me. I have been to back to work but, I had a couple of weeks holiday leave which i had to take or lose so, using those at the moment.I've been advised not to work during rads since I'd be at risk of picking up infections such as norovirus from the ward where I work. Best wishes to every one of you, thanks for your words of encouragement, be well x

sweatyspice

I love that you named it Gilbert.

chrismd02

I had my first radiation treatment today, and it feels like I have a sunburn.  Is it normal to have burning after only one treatment?  It scares me that I have burning already, given what I have read of all of your experiences. 

Wizzy

My GP told me I would feel worse before I get better. I was fine throughout the rads - drove myself to the hospital (10miles each way) which pleased me as I wanted to go it alone. I was "reviewed" by the consultand on the last day and it was not a pleasant experience - he didnt introduce himself, never once addressed me by name - just 'instructed' me -sit there/let me see/lie down & was none too gentle with his examination!! It was supposed to be my "happy" day & he spoiled it =o(

On the first day, I did feel a slight burning sensation but (touch wood) its now over a week since I finished (15sessions) & my skin seems ok so far. Its still a bit like a lucky dip in that I dont know what shape its going to be when I wake up each morning but... overall, I consider myself to be incredibly lucky!! As I said to the nurse, I wish I'd had more fun with them whilst I had a matching pair =D

I really hope things go well for you chris - Aqueous cream is your friend!!

chrismd02

Thanks, Wizzy,  I am now 9 treatments down, and the burning is gone...I was terrified that if I had burning on the FIRST day, what would I be experiencing by the end of treatment?...but so far, so good.  Just a little soreness that reminds me of pre-menstrual swelling.  I have a wonderful rad onc doctor who has been very understanding...and I have been using the creams religiously...Was this guy who examined you a rad tech or the rad oncologist?  That is terrible!  Everyone who gives medical care should have to experience it from the other side.  I was an oncology nurse, then went to med school and am a practicing hospitalist now.  I hope this experience will help me help my patients better.

Wizzy

Hi Chris, glad that burning didnt get any worse. How many more have you got to go? The staff who did the rads were absolutely brilliant and I had a few laughs with them but the guy who examined me was the "boss" - oncology consultant. I've previously seen 2 of his "underlings" both of whom were much nicer than him. I'm a Clinical Support Worker (Nurses Aide) on a busy ward. I had my surgery WLE & SLNB on 4th Feb & went back after 5 or 6 weeks whilst waiting for rads to start. My GP has advised me to stay off work until 28th May but I hope to get back sooner - for my sanity! I was put on Tamoxifen once I'd had the surgery results (which were good) & have piled on weight... all round the middle =o( Hopefully that will reduce once I start dashin g round the ward again.

Hope all continues to go well for you - take care of YOURSELF!

angelsabove

I am having a lot of  pain in my chest area. I did a double mastectomy (by choice) and YES I have pain in arm and shoulder area too. I was SO under the impression that radiation would be a walk in the park. UM no.....it WAS NOT..... I completed my last radiation treatment on 2/05/2010.

wife1friend

vivre, thanks for the insight. My wife is going throught the same circumstance, the pain is really unbearable at times but none of her doc's can give us a good explanation of why. The symptoms of costochondritis is identical to what she is experiencing. We will following up on this and hope it solves her pain issue.

Phoenix4976

Thanks Chrismd02.  The nurse that worked for my radiologist/oncologist was my savior!  She was empathetic, calm, always offering a solution. They need people like you who have been there and can understand what patients are going through.  I completed my last rads May 20th and am just now experiencing the SEs - nerve pain shooting throughout breast at odd times, peeling and redness that increased after I was finished with treatments and an extremely sore nipple.  Actually, it is very dark, too, in comparison - permanent tanning? I have named that breast Phoenix, as she will rise from the ashes - someday soon, I hope! I was one of the lucky ones - stage zero, DCIS, grade 3, 2 lumpectomies to get clear margins, then 34 rads, 7 of which were the boosters. They are the ones that became harder to deal with on a daily basis. 2 lymph nodes taken that were clear! Yea! I will be fine, I know, but like so many on this forum, am surprised at the reactions following end of treatment.

chrismd02

Hi Phoenix4976!  I only have 4 boost treatments left now, thank god.  My breast is quite red, and I have some itching and peeling, particularly in the arm pit and underneath.  The nipple is swollen and VERY sore, but overall I'd say I have had bearable discomfort.  I was lucky as well, stage zero, DCIS.  My hormone receptors were 100% positive, and since I am premenopausal (age 43), I will have to take tamoxifen for 5 years.  Good luck to you and I love your nickname, Phoenix.