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All TopicsForum: Radiation Therapy - Before, During and After → Topic: Armpit Pain and Swelling Months after RADS

Topic: Armpit Pain and Swelling Months after RADS

Forum: Radiation Therapy - Before, During and After — What to expect from treatment and ways to cope with side effects.

Posted on: Apr 12, 2011 03:24PM

texaslonghorn31 wrote:

Hi all! Thought I was throw this out and see if anyone else has had this experience.

My stuff in a nutshell... DCIS diagnosed last July. Lumpectomy and then 33 sessions of radiation. NO lymph node involvment that they told me about. My margins were clear. Finished radiation last Oct so am 6 months out.

I had the random pain in my breast ever since which I know is from the scar tissue and such. It moves around and hurts but I deal with it. Now however I have swelling under my armpit, shoulder pain, and at times feel like I have a slight loss of fine motor skills in my hand. Sometimes also my arm has a burning sensation.I called my oncologist and they told me to come in so am going in tomorrow.

So I have two questions really... one has anyone else had this happen? And two, is it possible to have breast cancer in the nodes with clear margins? Other than mammograms I was not given any type of treatment that would see if they nodes had cancer. They just assumed that since the margins were clear that it hadn't spread. Part of my armpit was involved in the radiation area.

The nurse said it could be possible lymphodema. Will see what they say. I just feel like I always get told it is nothing or any side effect couldn't possibly be from the radiation (though none of this mess started till AFTER radiation!). I feel like they sort of blow me off sometimes. When I was first sent in for my biospy I had to push for the mammogram to begin with... I was only 38 at the time with ZERO history of cancer in family.

Any thoughts? Thanks!

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Apr 12, 2011 03:34PM 37antiques wrote:

Hi Tex!

It could be any amount of things, but definitely connected to lymph nodes if the swelling is in your armpit.  You could just be getting a virus, or LE or or or or or...!

You seem to be treating it with a lot of common sense, good for you for pushing in the first place!  I've never heard of them not trying to get nodes, but maybe they don't with DCIS.  If you feel like you don't get enough answers, tell them so, and if you still get nothing, change doctors.  They are supposed to be your team and work with you forever!  Let us know how it goes.

IDC DCIS & Mets

Dx 2/27/2007, IDC, 1cm, Stage IV, Grade 3, 0/0 nodes, mets, ER+/PR+, HER2-
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Apr 12, 2011 03:38PM texaslonghorn31 wrote:

Thanks for the reply! Will see what they say. Probably.... oh, this is a side effect.... wish they would have told me more about the side effects of radiation. I have had several and was freaking out at the time since I didn't know so many issues could come up after the fact (like I got Shingles, and my fingernails were weak and would crack in half, and of course the lowered immune system). So this may just be another one of those fun "side effects". I love the radiation team at my oncologist's office... the radiation techs were awesome and the nurse is always quite helpful. But I have been bounced between 2 oncologists (mine went on maternity leave right after I finished RADS so I had follow ups with someone else). Hate to start over with a new dr but yes, they do need to pay attention to me! LOL. Just hoping this is yet another side effect and not something new.... not sure I can go through all this cancer mess a second time!

Dx 7/10/2010, DCIS, 2cm, Stage 0, Grade 1, 0/0 nodes
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Apr 12, 2011 03:39PM BertieP wrote:

I finished radiotherapy in October and am now having very similar symptoms to you. I had surgery a year ago with clear margins and also had the sentinel lymphnode removed - this was clear, indicating no spread there.

I had a Mammogram about 6 weeks ago, it was clear.

I complained to my consultant about the ache and tenderness and was advised to take evening primrose oil 3 gms / day. I'm not sure how thats going to help but its worth a try. He did say it would take 2 - 3 months before it would make any difference.

I've had a lot of pain in my rib, the oncoligist did a bone scan and decided its not cancer but a cracked rib!! I think RT has weakened my bones on that side. The fun never ends!!

Dx 2/25/2010, DCIS, 1cm, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Apr 12, 2011 03:50PM texaslonghorn31 wrote:

Bertie - Thanks for the reply. I may try that primrose oil and see if it helps. Figure it can't hurt! Did you have the swelling too in the armpit? Again with me they did not remove any nodes or even biopsy them... then only needles in me were in my breast for the biopsy and then the lumpectomy. I had a follow up mammogram also just on the affected breast in Dec and it came back clear... but here is a really stupid question that I should probably know the answer too.... when they do the mammograms... do your lymph nodes show up? I would think that the ones under your armpit don't since they are only smashing the breast so to speak. My cancer was caught really early as I pushed for a mammogram (just felt like something wasn't right) - had calcifications which then multiplied which is when they sent me for the biospy.

And yes, always fun... I just figure I was at a 7% chance of getting cancer so with my luck I will have some other random thing. Can't win the lotto but can get this mess. LOL.

Dx 7/10/2010, DCIS, 2cm, Stage 0, Grade 1, 0/0 nodes
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Apr 12, 2011 04:03PM swanseagirl wrote:

Texas,

I had Lumpectomy June, then chemo then rads. I did have a sentinel node dissection. 3 Nodes removed.

I was doing fine up until 2 months after rads.  I have armpit pain and also swelling. In a nutshell I was told I have breast lymphedema. The pain in the armpit area is from scarring from the node dissection and the rads just further aggravated it.

I have been doing exercises to stretch out the scar tissue.  My P/T told me I can be dealing with this for a few years.  I wished my rads onc hadn't played down radiation.

Rads tightens the tissue in our breast and arm pits.  I wouldn't worry, easier said then done.

Jules

Dx 5/10/2010, ILC, 1cm, Stage IIa, Grade 1, 1/3 nodes, ER+/PR+, HER2-
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Apr 12, 2011 04:04PM judyfams wrote:

I had my radiation in the prone position (face down).  You have to be a candidate for that which is early stage breast cancer and a breast that can hang down and the tumor should not be near the chest wall. Mine was at the 8 o'clock position.  So In that position only the breast gets irradiated, noit the armpit, nor the ribs, heart or lungs. 

I know this cannot help you now after the fact, but I am posting this so you can let your friends and family know about this position if they do ask you for advice.  My hospital (in NJ) didn't want to do it in the prone position, so I found a facility in NY that would.  I don't know why they are loathe to do this position for women if they are candidates. The doctors do not even mention that position when you go for the consultation - they only spoke about the supine (face up) position.

I am sorry to hear about your problems, and hope that you will find some answers and some relief.

Judy

.

Dx 3/1/2010, IDC, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2-Surgery 03/25/2010 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 05/25/2010 Cytoxan, TaxotereRadiation Therapy 10/10/2010 ExternalHormonal Therapy 03/15/2011 Fareston
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Apr 12, 2011 04:05PM swanseagirl wrote:

Bertie, just noticed you are from the UK.

I'm originally from Swansea, Wales.

Dx 5/10/2010, ILC, 1cm, Stage IIa, Grade 1, 1/3 nodes, ER+/PR+, HER2-
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Apr 12, 2011 04:07PM BertieP wrote:

Hi again,

I'm pretty sure your lymph nodes do not show on mammogram.

When I had surgery they put a blue dye in my breast  it drains into the lymph nodes and stains them so they can see which are the main ones, Only one node took the dye in me - some people have 4 or 5. They  removed the one with the dye and did a biopsy while I was still having surgery. It clear so they left others. They said if there was any cancer in the nodes it would be in this 'sentinel' node. I'm pretty confident there is no cancer in my lymph nodes but I do still have the same symptoms as you. I think it is odema.

fingers crossed we win lotto soon Smile

Dx 2/25/2010, DCIS, 1cm, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Apr 12, 2011 04:08PM BertieP wrote:

I'm in Newcastle upon Tyne

Dx 2/25/2010, DCIS, 1cm, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Apr 12, 2011 04:09PM texaslonghorn31 wrote:

Thanks Jules and Judy for the advice. It may very well be lympodema... in which case you mentioned having a PT? Does going to PT seems to help or is it more of a "time makes it hurt less" type of thing? I would be totally open to doing PT if it would help!

 And Judy- the option of laying face down wasn't even presented as an option to me. Either they don't do it at my cancer center or I wasn't a candidate.. not sure how large of breasts you have to have... I am only a B cup. Smile

Dx 7/10/2010, DCIS, 2cm, Stage 0, Grade 1, 0/0 nodes
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Apr 12, 2011 04:12PM texaslonghorn31 wrote:

Well I didn't get any blue dye! Not feeling so special now. I did get four nice blue dots tattooed on me though!

Does lympodema make you tired? I am so tired much of the time. My energy started coming back after RADS but I get sick more than I used to - and I work around kids so of course I catch everything I get!

And yes on the lotto! Maybe I should start playing. That may help. LOL.

Dx 7/10/2010, DCIS, 2cm, Stage 0, Grade 1, 0/0 nodes
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Apr 12, 2011 04:28PM BertieP wrote:

I can beat you tex, I got 5 dots!!

Dx 2/25/2010, DCIS, 1cm, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Apr 12, 2011 04:36PM texaslonghorn31 wrote:

LOL Bertie. When I first got my dots we had a cancer party at my place and my friends played connect the dots and drew on me. Love my crazy friends that helped get me through cancer... imagaine what they could have drawn if they had 5 dots to work with!

Dx 7/10/2010, DCIS, 2cm, Stage 0, Grade 1, 0/0 nodes
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Apr 12, 2011 04:37PM Binney4 wrote:

Texas and all,

After and breast cancer surgery (even prophylactic mastectomy with no nodes purposely removed) lymphedema can develop in the breast, chest, side, back, shoulder area, or axilla. In fact, it's actually quite common with lumpectomy and radiation, though it can be hard to get it diagnosed because many doctors aren't much aware of it. When it's in any of those places it's called "truncal" lymphedema. Here's an information page about it:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

It can even be present with no visible or measurable swelling, especially since post-surgery our breast "geography" is new and uncertain. If what you have is truncal lymphedema, then it's very important that you see a well-trained and experienced lymphedema therapist for treatment and to learn on-going self-care. Untreated, lymphedema will eventually create hardness of the tissues and skin changes (roughness, peau d'orange, weeping), and it greatly increases your risk of serious systemic infection.

The good news is that treatment doesn't involve either surgery or drugs.Smile It involves a very gentle directional massage, exercises, skin care and some compression (see the bottom of that information page for some of the compression options). Early diagnosis and treatment means it'll be easier to reduce any swelling or discomfort and to keep it that way on-going.

Here's a page about finding a well-trained lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

And here's one with information about lymphedema for your doctors:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

Do let us know what you discover tomorrom, Texas. Gentle hugs,
Binney

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Apr 12, 2011 04:42PM texaslonghorn31 wrote:

Binney - that is AWESOME information! Thank you so much for sharing it. I do worry about what is referenced in your post regarding some things being hard to diagnosis because some dr's just aren't aware of it (or they don't want to admit that some issues are caused by the RADS!). I would much rather have side effects than still have cancer but it would be nice to know that some of the things I feel are real and not me just being a whiner. And I love when I get told that certain side effects are too rare to even talk about with me since there is a slim chance of my getting them. Considering it was slim chance I had of getting cancer and did I wish they would just tell me everything so I don't think every side effect is something unrelated! Great article!!!!

Dx 7/10/2010, DCIS, 2cm, Stage 0, Grade 1, 0/0 nodes
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Apr 12, 2011 04:57PM BertieP wrote:

Thanks Binney,

Great information; think I need to go back to my Dr.

Dx 2/25/2010, DCIS, 1cm, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Apr 12, 2011 05:13PM Binney4 wrote:

Hmmmm, don't want to admit it could be caused by the rads, do y'think?!Wink That's why I included that last page about Essential Information for healthcare providers -- some women like to copy that and pass it along to their doctors.Kiss

Gentle hugs,
Binney

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Apr 12, 2011 08:15PM swanseagirl wrote:

Texas, going to a Lymphedema P/T has certainly helped me.

I came back from the UK with a swollen breast and armpit.  I went for 3 days for 3 weeks and I am feeling so much better. She stretched out my tissue that was tight from rads and worked on my scar tissue. She gave me stretches and massages to do at home.  All of my other Dr's were telling me that it is a SE from rads/surgery but non were offering any solution.

Wished I could top you girls, but alas I only got 4 tattoo's. I'm feeling quite left out. LOL

Bertie, hear you are gettting some pretty nice weather  your way?

Enjoy your Tuesday evening ladies xxxxxxxxxxxxx

Jules

Dx 5/10/2010, ILC, 1cm, Stage IIa, Grade 1, 1/3 nodes, ER+/PR+, HER2-
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Apr 12, 2011 09:49PM, edited Apr 12, 2011 09:52PM by texaslonghorn31

Jules... I only got 4 rad tats too! Though I do have several other non rad ones. LOL. With the lympodema... I don't have massive swelling, just the pain and limited mobility and such.... would seeing a PT help with that? What all do they do for you at PT? I would be very willing to do exerecises or what not.... I was told by my oncologist to stop massaging the area to try to break up the scar tissue because it seemed to be irritating it. Over the counter pain meds don't do anything to help either. Liquor seems to help but can't do that all the time!

Thanks again all for all your comments on this thread! Will be interesting to see what the oncologist tells me tomorrow.

And I hope someone is getting some nice weather somewhere.... here in TX it is just hot. And getting hotter. Smile

Dx 7/10/2010, DCIS, 2cm, Stage 0, Grade 1, 0/0 nodes
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Apr 12, 2011 11:19PM swanseagirl wrote:

Texas, I would definitely check out a P/T even if you do not have Lymphedema.

The rads totally tightened up my muscles in my ribs and back. 

FYI my onc totally played down my swelling and stiffness. It was my surgeon who said I might have lymphedema. I already had a call into the P/T. My P/T also shared that we could have muscle pain/stiffness up to and beyond 2 years.

I have a stretch band to do exercises. Plus I reach up on the door frame and turn my body away.  These are just some basic stretches but help the area from getting tight.

The sun is out here in WA but we had a high of 55 deg. Brrr.

Keep me posted on what your onc says. I'm curious.

Good luck.

Jules

Dx 5/10/2010, ILC, 1cm, Stage IIa, Grade 1, 1/3 nodes, ER+/PR+, HER2-
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Apr 13, 2011 01:06PM texaslonghorn31 wrote:

Just wanted to post a follow up... saw my radiation oncologist this morning. It could be some truncal lympodema but OF COURSE none of this could be due to radiation (which is what I always get told... even though of course I had NONE of these side effects until I went through radiation). Whatever. I am going to be sent for a MRI as soon as possible. I have never done a closed MRI and am slightly claustrophobic so that should be interesting! Will see what comes out of it!

Dx 7/10/2010, DCIS, 2cm, Stage 0, Grade 1, 0/0 nodes
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Apr 14, 2011 03:53PM swanseagirl wrote:

Texas, have only had one closed MRI.  Apparently some places will offer you a relaxant.  I never got offered and didn't know to ask. Just kept thinking I was on the beach in Mexico.

I get frustrated when we are told that our SE's are not from radiaition.  BULL!!!!!!

Stay strong xx

Jules

Dx 5/10/2010, ILC, 1cm, Stage IIa, Grade 1, 1/3 nodes, ER+/PR+, HER2-
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Apr 14, 2011 06:25PM karen333 wrote:

Texas, I too had radiation in Oct.2009, and only 2 mos ago got an infected seroma, edema, and swelling.  It had to come the rads as before the rads the skin on my L breast looked just like my non-radiated breast.  I never was warned of this side effect either.  You have to keep a close eye on it, if it becomes sore, swollen, red and/or tender you are to be placed immediately on antibiotics.  I put in an emergency call to my BS, who saw me the next day.   Karen

Dx 8/8/2009, 2cm, Stage IIa, Grade 1, 0/1 nodes, ER+, HER2+
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Apr 14, 2011 06:28PM karen333 wrote:

Texas, I too had radiation in Oct.2009, and only 2 mos ago got an infected seroma, edema, and swelling.  It had to come the rads as before the rads the skin on my L breast looked just like my non-radiated breast.  I never was warned of this side effect either.  You have to keep a close eye on it, if it becomes sore, swollen, red and/or tender you are to be placed immediately on antibiotics.  I put in an emergency call to my BS, who saw me the next day.   Karen  ps My PCP gave me a valium to take as I am claustrophobic too.

Dx 8/8/2009, 2cm, Stage IIa, Grade 1, 0/1 nodes, ER+, HER2+
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Apr 15, 2011 03:15PM texaslonghorn31 wrote:

Thanks ya'll! Sometimes I swear I want to stand outside the oncology office and hand out fliers with a list of possible side effects you can get that no one bothers to tell you about! Granted I know that every illness or pain I have till the end of  time will be from RADS, but when things never happened BEFORE the RADS and are in the area of the RADS, then I tend to think it is a SE of the RADS! Still waiting on getting the MRI scheduled.... and I may take some happy pills when I am in it! But I will get through this like all of the rest of the cancer stuff... thanks for the support all!

Dx 7/10/2010, DCIS, 2cm, Stage 0, Grade 1, 0/0 nodes
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Apr 18, 2011 05:06PM swanseagirl wrote:

Texas, I'll help you!!!!!!!!!!!!!!!!!!!!!

Dx 5/10/2010, ILC, 1cm, Stage IIa, Grade 1, 1/3 nodes, ER+/PR+, HER2-
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Apr 19, 2011 08:07PM texaslonghorn31 wrote:

LOL Swanseagirl..... we should start a list!

Dx 7/10/2010, DCIS, 2cm, Stage 0, Grade 1, 0/0 nodes
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Apr 19, 2011 08:10PM texaslonghorn31 wrote:

Oh and for an update..... did the MRI's today to see if anyone can figure out what the deal is with the pain in the arm and armpit. Had an allergic reaction to the contrast dye and got hives. That was fun. Hope to get the results back soon!

Dx 7/10/2010, DCIS, 2cm, Stage 0, Grade 1, 0/0 nodes
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Apr 19, 2011 11:40PM Binney4 wrote:

Texas, that's unbelievableFrown -- here you are worrying about the claustrophobia, and it's the hives that get ya'!Tongue out Hoping for clear answers and a way forward to healing very soon!

Be well,
Binney

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Apr 26, 2011 05:25PM swanseagirl wrote:

Texas, keep us posted.

Jules

Dx 5/10/2010, ILC, 1cm, Stage IIa, Grade 1, 1/3 nodes, ER+/PR+, HER2-

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