Breast pain post radiation

Phoenix4976

Hi again Chrismd02. Thanks for your reply. Woo-hoo - you're almost done!  I, too, had an easy time throughout, it just seems to be worse all of a sudden!  I was post menopausal (age 63) but will also be on tamoxifen for 5 years. I was ER/PR positive. I seem to be tolerating it just fine so far - a few hot flashes, which is nothing after all we've been through! I was kind of laughing with my daughter that I felt like something from a bad rock movie - shooting sparks out of my nipple! I tried ice and ibuprofen tonight, but probably not enough. I think it's going to be an intermittent thing and will come & go on it's own schedule.  My itching was really helped with some Calendula Cream bought in the baby dept. at Target - called California Baby Calendula cream. It's all natural and organic and I did not want to continue using cortisone cream (recommended by oncologist/radiologist) because of thinning of skin over time. Maybe it will help you, too!  Best to you - we're survivors!

chrismd02

A lot of folks have asked about the swelling...and as a physician, I can tell you that swelling is how your body reacts to inflammation induced by the damaging effects of radiation.  The blood vessels essentially become "leaky" to allow for the immune cells to infiltrate the damaged tissue and clean things up.  It is the same reason your thumb swells if you slam it into a door, for example.  As the tissue swells, it becomes tense and puts pressure on the nerve endings, which causes pain.  Anti-inflammatory medicines such as ibuprofen can help with this type of pain.  Costochondritis is inflammation inlvolving the cartilage where it attaches the ribs to the sternum (breast bone) and this type of pain is reproducible.  If you press on your sternum, the pain will get worse.  This condition is also treated with anti-inlammatory medicines, but you will likely need prescription strength (Ibuprofen at a dose of 800mg every 8 hours).  DO NOT take medicines like Ibuprofen if you have kidney damage or have had stomach ulcers.  To protect your stomach, take this medicine with prilosec or prevacid, an OTC acid suppressing medicine, since these medicines interefere with the stomach's ability to make the protective mucosal barrier that keeps the stomach acid from damaging it.  Good luck to all of you, and keep fighting the fight!

kira66715

Chris, Much breast swelling after radiation is breast lymphedema which has markedly increased with SNB. The acute swelling of inflammation is common as well, but breast lymphedema is largely over-looked and under-diagnosed, and I work in rad onc and see it very frequently. My patients do well with lymphedema therapy, and it often gets better with time.

Here is a discussion from breastcancer.org

http://www.breastcancer.org/tips/lymphedema/ask_expert/2008_04/question_07.jspBreast lymphedema possible?

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Question fromAmy: Does lymphedema only occur in the arm or can it be in the breast as well?

Answers -Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : Absolutely! Not only can it be in the breast as well, it can be exclusively in the breast and chest wall, even if it does not appear in the arm. So we need to recognize that breast edema and chest wall edema exist and should be treated.

Jennifer Sabol, M.D., F.A.C.S.: As a surgeon, I probably see it more acutely than most and have a more difficult time getting other physicians to acknowledge that there is such an entity as lymphedema of the breast which is actually quite uncomfortable for some patients as well as alarming, because it is difficult to ask for treatment for swollen breasts. I think maybe you can comment on how you manage patients like this.

Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : I would say, first of all, recognition is part of the key. I believe anecdotally that I am seeing more frequency of breast and chest wall swelling - lymphedema, if you will - now with the sentinel node biopsy, as we are removing the direct drainage pathway out of the breast. Unfortunately, it is going far underrecognized. Treatment for breast and chest wall lymphedema is analogous to the way we would treat the arm, meaning that the patients would require lymphatic drainage, compression, therapy, exercise, and skin care. Many of these patients will require custom fit or near-custom compression bras.

Kathryn Schmitz, Ph.D., M.P.H., F.A.C.S.M.: I would say this is an international problem. I was at the Australasian Lymphology Association meeting in Perth in March, and this issue of seeing more breast edema was a theme there. It seems to me that the compression garments and treatments available are not as advanced as they are for arm edema, the compression garments in particular.

Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : I would agree with that to an extent. I think there are excellent compression bras that exist. I agree with you that we are as not highly evolved in this area in recognition, treatment, and management as we are with the arms.

Jennifer Sabol, M.D., F.A.C.S.: I would add one note of hope, and it is sort of anecdotal. I think this is one of the few times that lymphedema does have a tendency to regress. It's probably due to the acute injury of the radiation therapy. Breast edema does tend to go down over time, though it may not disappear. It is a very slow resolution of the edema and it's almost never complete. I generally tell patients to expect a very slow, ongoing improvement, even over 2 to 3 years after their radiation therapy, until they reach a stable plateau. I'd be curious if you two have found the same sort of better overall prognosis for the breast edema.

Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : I would add one note of hope, and it is sort of anecdotal. I think this is one of the few times that lymphedema does have a tendency to regress. It's probably due to the acute injury of the radiation therapy. Breast edema does tend to go down over time, though it may not disappear. It is a very slow resolution of the edema and it's almost never complete. I generally tell patients to expect a very slow, ongoing improvement, even over 2 to 3 years after their radiation therapy, until they reach a stable plateau. I'd be curious if you two have found the same sort of better overall prognosis for the breast edema.
On Wednesday, April 16, 2008, our Ask-the-Expert Online Conference was called Preventing and Treating Arm Lymphedema. Kathryn Schmitz, Ph.D., M.P.H., F.A.C.S.M.,Nicole Stout Gergich, M.P.T. C.L.T.-L.A.N.A., and moderator Jennifer Sabol, M.D., F.A.S.C. answered your questions about ways to prevent and manage lymphedema.

Lymphedema is rarely taught in medical school and residency, so it's frequently not recognized, even by physicians who remove lymph nodes or radiate.

Kira 

 

chrismd02

Kira,

Thank you for your comments.  Swelling can be caused by either phenomenon, but it my case, I did not have a SNB.  Since I had DCIS, and my margins were clear, no SNB was performed.  There was no microinvasion, so my swelling is purely an inflammatory response.  I do have a bit of knowledge about lymphedema, and although you are correct in saying that it is not a topic that is discussed at length in medical school, most folks who do fellowships in oncology are taught about it.  I, myself, am familiar with it because I was an oncology nurse for 4 years prior to attending medical school.  But you are correct in adding that lymphedema can contribute to breast swelling during radiation therapy.  The hope of performing a SNB rather than removing all of the lympatic drainage from the breast was to spare uninvolved lymphatic tissue to help prevent lymphedema.

chrismd02

Kira,

 Thank you for your comments.  Swelling can be caused by either lymphedema or inflammation, but in my case, since I did not undergo a SNB, it is purely an inflammatory phenomenon.  I had DCIS and my surgical margins were clear,so no SNB was performed.  The pathology report confimed no microinvasion.  I do have a bit of knowledge about lymphedema, and though you are correct in saying that it is not a topic that is discussed at length in medical school, most folks who do fellowships in oncology are familar with it.  I, myself, am aware of it because I was an oncology nurse for 4 years prior to attending medical school.  The whole point of doing a SNB rather than complete extraction of all lymph nodes was to spare uninvolved lymph nodes that were not involved with malignant spread to reduce lymphedema.  

kira66715

Chris, and yet all the current studies on SNB are showing lymphedema rates anywhere from 7-41%, as there is no gold standard for diagnosis.

And, as someone who reads path reports all day, I see most SNB involving around 5-6 nodes.

I do see a lot of breast lymphedema, and I find that by removing the main breast drainage node through SNB, and some surgeons will leave a lumpectomy scar that makes drainage in a quadrant difficult, and then you throw in radiation, and there's a lot of breast lymphedema.

It's great that you were able to avoid the SNB (I see some women with DCIS getting them, and some don't--no real standard in the surgeons who refer to us.)

You're way ahead of the game in understanding, with your history of oncology nursing.

Hope all goes well as you complete radiation.

Kira 

MsMary

Hi I was diagnosed 06/2009 with stage 1 breast cancer.  I had surgery 08/2009, I completed my radiation treatment on 02/03/2010, so today make's 1 year since completing rads and my breast hurts more now. I had my sentinal lymph node removed and two others, they were all clear.   But since completing my radiation treatment,which went rather well ,( used the aquafor like water.} I  now  have  pain  in armpit area and mild swelling and in the incision area.  When will this end.???

FireKracker

I just finished the rads yesterday.was sent here by the feb rads group of sistas.ANOTHER EYE OPENER.IMy dr.told me 2-3 weeks and everything should go back to normal...WHAT NORMAL.AND WHATS HIS NORMAL????Im burnt to a crisp.had 28 tx. and 5 boosts.I am sooo fatigued and from what i have read hear my stomach is turning......everyone is telling me the worst is over.yea right.i feel like a truck just ran me over...it doesnt look like ill be doin the happy dance any time soon.YES THIS IS THE GIFT THAT KEEPS ON GIVING.WHERE IS THE RETURN LINE?????

Vlady4848

Hi Im Vicki, I finished 4 months of chemo and also radiation 2 weeks ago. Im very sore all around my left breast, deep in the muscles. I work in a busy convenience store. I cant go into the cooler to stock, the cold hurts worse. I wonder if thats normal. The cold hurts so much, it feels like knives are going through my breast, and burns. I get negative feed back from co-workers, like im making it up. if they only knew the truth.   Sincerely Vicki.  Ps. I hope in time it wil go away

Pollyagain

I had my last boost about ten days ago, and I have so much breast pain tonight that It sends chills down my spine.  This is mainly the jabbing, stabbing, someone just stuck a pin in me pain, although my skin is not completely healed either.  Has anyone had drainage or blood (a little not a lot) show up on bras or dressings?  I was using nu-gel dressings with white pads over them and they gave me a couple of surgical bras.  I don't know if a sign of drainage where skin is peeling is normal or not.  Basically, I am miserable, much more now than when I was getting the rads.

yizbieta

I have a question for anyone with an answer-

I have been having lymphedema therapy and the therapist found a spot on my affected breast (six weeks after radiation -36/36) that felt like rubber gloves being rubbed together- a creaky friction-like feeling when it is being manipulated. I can't feel it unless I am the one manipulating it. I will ask my doctor when I see him, but does anyone have spots like this and if so, what is it??

Thanks for anything you can tell me!

Elizabeth

yogabeth

Hi, I notice the dates for these posts are from 2008! Is anyone a part of this now? I'm considering mastectomy without reconstruction, unilateral, or lumpectomy with radiation and tamoxifen. I'm really concerned about the last 2 treatments. Are there women who have completed radiation being a year and if so are you still having trouble? I wonder if breast tissue shrinkage is an issue or if anyone has had nipple deformity from radiation. I guess I'm needing some information from fellow women! Please be in touch soon if possible. Surgery is scheduled December 16, 2011.



Beth

yogabeth

Dear Elizabeth,

I'm wanting to learn as much about post radiation as possible. I have surgery planned (mastectomy without reconstruction) December 16. Initially, I thought I'd have lumpectomy with rad and tam therapy. I have DCIS stage 0, non-invasive. The stories I'm hearing about the long term affects of rad and tam, as well as the possible return rate of DCIS invasive or non invasive at a 10-15% rate, have led me to feel more comfortable with mastecomy. Reconstruction isn't a viable option for a few reasons. Any advice would help. I'm concerned that I'll feel pain and discomfort long term in my breast, have shrinkage and also have affects from tamoxifen. Thank you ! Beth



(Any other girls that have information to share, I'd so appreciate it! And as soon as possible.)

eileenr56

Beth,

I don't know if you have decided anything.  I can tell you that I had two lumpectomies (to get good margins)  and radiation.  My breast is smaller than the other one, but it is perfectly round.  I do have a problem with my nipple retracting, but that's because my surgery was right on top of my nipple and I had a seroma behind it.  As the serome shrinks, the nipple pulls in a little. so that does look funny. 

Surgery didn't hurt at all for me.  so if i was concerned about the breasts being two different sizes, I would have the other one made smaller to match (one is a D one is a C or .  Certainly that's better than having a MX and not having reconstruction.

It's been 16 months for me.  So far, no long term effects of the radation.  No pain, skin is good.  The nipple problem is because of my surgery and where my dcis was and not radiation. 

There is a new test that is coming out in december that will help determine if you need radiation at all for dcis.  It's called Oncotype DX. I would personally have that done before I had raditation.

For me, radiation did not hurt.  I got pink to dark pink.   I did everything they told me to do.  but everyone is different.

Hope this helps.

Eileen

Beaglesgirl

I am a about 10 days post rads. I things hope the worse of it peaked for me yesterday or this morning. All I can say is that it clearly is very unpleasant but my tech says many womens burns are more severe than my own.  

My skin is bright red and peeling in some spots. I have tissue expanders in and the radiated side seems to have gotten much firmer and heavier which makes my back ache if I try and do to much. I haven't felt comfortable sleeping on my sides or heaven forbid my belly since april so that hasn't changed.

I wouldn't say this is worse than chemo although it is more painful - systemically its not affected me negatively... I was exhausted on chemo and the fatigue from rads does hit me some days more than others but I find laying down for several hours in the afternoon will do the trick. 

I hope my sharing will help someone. I would not change my decision to have my BMX. I think it is a very individual choice and will only make sense if it comes from within you.

blessings

L 

emather

Sat here with pain after 18 months wondering if it is 'normal'-  I 'burnt badly after raidiotherapy and somehow reading these posts I have just realized nothing is normal - I still have pain and worry why does no one warn us of this!  My 'burn' has healed but still I have broken veins so obviously damage has been done! Fine - Better this than a mastectomy but I just wish someone had explained this to me! My brain was in a whirr at the time and I was just thinking thank god I didnt need Chemo not realizing what damage the radiotherapy had done!!!

emather

P.S. Yes my Breast shrunk considerably and is much 'harder'

serenhedd

I am in the same boat as you and having surgery again in the next couple of weeks before rads. Reading this forum has frightened the life out of me. I was totally unaware you could have internal/external rads. Feel I need a lot of things explained to me. Plus are there any alternatives to HRT Tamoxifen? Despite being positive so far and having good news today ...my lymph nodes are clear I feel like running for the hills.....sleep is a problem....

jankc

Hi, Serenhedd.  I completed radiation in September and there are conditions that must be met for internal radiation.  Size and stage were two of those conditions (tumor size limit and stage limit)...I'm sorry I can't remember what those were exactly.  With a tumor size of <1 cm and at Stage 1, I did qualify.  However, I opted for the traditional radiation (33 treatments).  I don't know about alternatives to Tamoxifen; I'm on Arimidex but that's because I'm postmenopausal.  Great news about the clear lymph nodes and best of luck with your upcoming surgery!

cycle-path

You can take Tamoxifen whether you're pre or post menopausal. The AIs are (generally) only to be taken by post-meno women. There are plusses and minuses to both Tamox and the AIs.

jankc

Emather, I did OK during radiation (or maybe I didn't worry about the pain since I'd see a doctor every week) but suddenly, 3 months after completion, my irradiated breast hurts. It started about 5 days ago and it's setting my teeth on edge even with Ibuprofin. I have my 3 month mammogram tomorrow and I'm dreading it. And yes, my breast shrunk from radiation, too, and is harder and "perkier". I try to avoid bras if I can, but if i have to wear one, I stick a nursing pad or two in the cup and it evens things out.

serenhedd

Thanks jankc, waiting to hear when my next op is, only a day op thankfully as its just to take a bit more 'clean' (hopefully) tissue away. I've been told I have stage 2 cancer although the lymph nodes are unaffected (thank God). THe lump removed was 12mm. Feel like this is all happenning to another person...not me...is this normal?

I hope that you are fully recovered by now.

jankc

serenhedd, I don't know if it's normal or not, but I bet it is.  I definitely felt that way, even after radiation was over, but it's all become more real since I've started my round of 3 month onc and surgeon visits and my first mammo since the Dx in June.  Plus a couple of weeks ago, after starting the Arimidex in mid-September, I finally pulled out the SE list the pharmacist gave me.  I didn't look at it the first 3 months because I knew if I did, I'd convince myself I had every SE on the list (and it's a loooooooong list!), but I've had a few things going on that weren't apparent before this new Rx, and sure enough, there they were on the list.  : )  My burns from radiation have healed, my underarm is still numb from the SNB (my RO told me that could last a year or so), the lumpectomy and SNB scars are fading, and I'm not dragging through the day much anymore...so yes, I'd say I'm pretty much fully recovered.  I hope you hear about your op day soon so you can gear up for it and then get it over with (and I'll keep my fingers crossed for clear margins)! 

serenhedd

Hi Jankc,

Had op yesterday, overnight stay, sore, tired yet sleep still evades me. Never mind another hurdle over. I'm really sorry I'm new to all this haven't even seen an oncologist yet so I don't understand the abbreviations. But sounds like things are looking up for you

jankc

serenhedd - Besides the radiology oncologist,  I never saw the medical oncologist until I was almost through with radiation, a couple months after my surgery.  And I forget about the abbreviations, so here's a translation of my post ; )

Rx = medication, SE = side effects, Dx = diagnosis, SNB = Sentinal Node Biopsy, RO = radiation oncologist

And there's a thread on the site that lists the meanings abbreviations; I have to look at it all the time!  http://community.breastcancer.org/forum/131/topic/773727?page=1#idx_1

I forget to check posts, so I hope you're not as sore and sleeping better by now. : ) 

andy7

Hello ladies-Just wanted to add some info you might not be aware of for those of you about to start radiation. Hypofractionated was my choice-16 fractions,2.65Gys per day instead of 1.65 to 2.00, but less overall-42.65Gys instead of 50 0r 60(depending on boost,which I didn't have).It's new, so you have to ask(push?) about it. Not all women are eligible;you have to have clean margins,no node involvement,and be fairly small chested. I'm one week out, and still have "road rash" and a very red,sore nipple,but I'm so glad I did it this way.My onc told me I would hav much less reaction skinwise,And so far that's true. I'm very sore, but taking 400mgs. of E and Turmeric root extract for inflammation, +vicodine(switched to ibuprofen vicodine because of concern about so much tylenol(4 months on vicodine still).Good luck and blessings and gentle hugs to all of you,fellow survivors(or better,thrivers!)

Lindainspring

I took arimidex and had the same numbness on my thumb and fingers. One side effect of arimidex is it causes symptoms of carpal tunnel. My doc switched me to tamoxifen and those symptoms went away.

KimMosley

Yes, I am experiencing a lot of pain. My last rad was in May & the pain started about 6 wks ago. There isnt a place on my breast that can be touched , without hurting. Also, the rt breast that didnt have rad , is also hurting rt where I told them I knew the rad had touched too.. The area connecting the 2, also hurts. Ridiculous.

Annadj13

I have been finished with radiation for over a month now. My breast is still HOT and my painful nipple is swollen and hard. Yes, I have the shooting pains also. All Drs I dealt with said about radiation. "You will get a little sunburn and you will feel tired for a short time". Liar, liar, pants on fire!

Wackywardwoman

I am 7 days pst my last treatment. Now the hell has began. This week I have severe peeling and blistering under my breast in the fold. This is the most agonizing painful thing I've ever had to deal with in my 60 yrs. it's so raw I just cry. When I had surgery in July of this year I was told that I'd be fine by Oct 15 because my husband and I have a dream trip planned to Greece and the Greek Islands. I don't see how there is any possible way my burn wounds can heal in 3 more weeks. I was fine until the last week of my 5 boosts. How am I to sit on a airplane in such pain for 11 hours. I'm so pissed that my Drs lied to me. I could have changed my dates. Oh no don't do that they said you'll be fine by that time. I just cry. It's to late to change dates or cancel. I'm going I guess I'll just have to have another suitcase for medical provisions. What a way to ruin a beautifully planned 40th anniversary celebration. I'm wandering now if I needed rad at all. I had stage 0 insit u cancer. If I had it to do over i would have not taken this awful rad therapy. I just trusted my Drs. If anyone can offer up any way to help me heal faster please do. I'm trying the Medihoney but it stings and burns terribly. So far just numbing gel, steroid creme for itching and aqua4. It seems to be getting worst. I guess it's a waiting game and eventually it'll heal but god I wish would speed up the process. I suppose when nothing else works just praying might. God bless all of my warriors in pink! Let's keep fighting ladies!