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Old 01-15-2012, 02:39 PM   #211
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Quote:
Originally Posted by OceanAnnie View Post
Hi everyone, I haven't been here in awhile. I do read the thread sometimes.

I'm wondering about some things. Maybe someone here has some experience and thoughts on the matter. The breast surgeon said I have lymphoedema. I've been researching and finding out some about it. I was experiencing a degree of it since my surgery (ductal removal) this past Spring.

IMO, it was exacerbated by having a mammogram in Nov.. I mentioned I had surgery on that breast prior to the mammogram and the radiologists didn't seem to think anything of it. Business as usual. I felt excruciating pain during the mammogram. I have a fairly high tolerance for pain, but I was in tears. I did say something, but she said she was almost done and continued. I have had swelling, and pain in my breast since then. I was having throbbing pain that made me go to the ER one time, but they had no diagnostic staff available at the time. It was late. Long story.

I haven't been able to wear my rings since Christmas. I thought it was because I picked up a few pounds. After speaking with the breast surgeon I realized it was the lymphoedema. I only gained a pound or two over Christmas.

Anyway, I will never have a mammogram in that breast again. I'll have to get the testing some other way. Of course I mentioned it to the specialists and they don't seem to think the lymphoedema is a result of the mammogram. There doesn't seem to be any connection in literature I have read so far, but it seems commonsensical to me that the pressure on surgical scarring could lead further damage.

The breast surgeon said it will go away. Everything I have read said it could be a lifelong problem that could lead to cellulitis, infection, and even cancer. Now I'm researching specialists that will follow me for the lymphoedema and help me manage it. I don't want any long term problems from it.

The plan is to have a breast MRI next week. Hopefully that will present answers and a plan. I'm just really disheartened by the series of events. I hope that it does go away. But I just don't see how. The scar tissue is blocking the flow. I just don't see it.

I have read about compression but until I see a specialist I don't think I should do that because it could compound the problem. Ugh. If you have had this problem, what have you done for it? What helped you? Who did you see?

TIA.
I imagine others will chime in who have experienced lymphedema, but I will add my two cents.

My understanding is that lymphedema can occur any time over the years after you have had lymph nodes removed. I think that radiation near or at the site of the node removal can make lymphedema more likely. The unfortunate thing is that the lymphedema can crop up many years after surgery, for no apparent reason.

Remind me of your story as to whether or not you had one or more nodes removed.

I had very slight swelling initially on the side where I had 16 or more nodes removed in 2004. I was assessed by a specialist and basically told my swelling was minor several months post surgery. I was told both with the info received at the hospital after the mastectomy/node removal and by that specialist to be careful for life with burns, cuts, insect stings, or anything else that could cause an infection anywhere on the arm on my affected side. If an infection would occur I was told to obtain medical help( have it looked at and get an antibiotic). I was told not to wear tight jewelry on fingers or on the wrist, and to avoid tight sleeves anywhere on that arm. I was told not to carry heavy grocery bags hanging down from that arm.

I would wait on doing self-compression until you have more guidance. I see women with the compressions sleeves on from time to time, and I know some women wear a sleeve when flying.

I don't have mammograms on my affected side because there is no breast tissue there, only tissue from my stomach where my reconstruction flap came from. However, I have never heard that mammograms cause lymphedema. How long after your surgery was that mammogram? I understand healing takes a long time, and it will hurt to have a mammogram if you are not healed from breast surgery. My plastic surgeon told me to wait many months after my reduction on my good side before having the first mammogram.

I know there are some techniques to basically massage the fluid from the swollen areas. I just received a groupon email from a massage therapy group here who performs lymphedema massage based on Dr. Vodder’s manual lymphatic drainage (MLD) method which involves rhythmic, pumping massage
to reduce swelling.

I also remember my breast surgeon telling me to lift my affected arm over my head every time I thought of it. I guess it is a gravity thing?

Hope others will chime in.

I am sorry you have having this problem but am glad you are addressing it. You want to be proactive with lymphedema because I don't think it goes away on its own like you were told, but there are ways to reduce swelling and avoid further damage.
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Old 01-15-2012, 03:07 PM   #212
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Quote:
Originally Posted by snappy View Post
I imagine others will chime in who have experienced lymphedema, but I will add my two cents.

My understanding is that lymphedema can occur any time over the years after you have had lymph nodes removed. I think that radiation near or at the site of the node removal can make lymphedema more likely. The unfortunate thing is that the lymphedema can crop up many years after surgery, for no apparent reason.

Remind me of your story as to whether or not you had one or more nodes removed.

I had very slight swelling initially on the side where I had 16 or more nodes removed in 2004. I was assessed by a specialist and basically told my swelling was minor several months post surgery. I was told both with the info received at the hospital after the mastectomy/node removal and by that specialist to be careful for life with burns, cuts, insect stings, or anything else that could cause an infection anywhere on the arm on my affected side. If an infection would occur I was told to obtain medical help( have it looked at and get an antibiotic). I was told not to wear tight jewelry on fingers or on the wrist, and to avoid tight sleeves anywhere on that arm. I was told not to carry heavy grocery bags hanging down from that arm.

I would wait on doing self-compression until you have more guidance. I see women with the compressions sleeves on from time to time, and I know some women wear a sleeve when flying.

I don't have mammograms on my affected side because there is no breast tissue there, only tissue from my stomach where my reconstruction flap came from. However, I have never heard that mammograms cause lymphedema. How long after your surgery was that mammogram? I understand healing takes a long time, and it will hurt to have a mammogram if you are not healed from breast surgery. My plastic surgeon told me to wait many months after my reduction on my good side before having the first mammogram.

I know there are some techniques to basically massage the fluid from the swollen areas. I just received a groupon email from a massage therapy group here who performs lymphedema massage based on Dr. Vodder’s manual lymphatic drainage (MLD) method which involves rhythmic, pumping massage
to reduce swelling.

I also remember my breast surgeon telling me to lift my affected arm over my head every time I thought of it. I guess it is a gravity thing?

Hope others will chime in.

I am sorry you have having this problem but am glad you are addressing it. You want to be proactive with lymphedema because I don't think it goes away on its own like you were told, but there are ways to reduce swelling and avoid further damage.
Thanks, snappy.

I don't *think* I had any lymph nodes removed. It was supposed to be a total ductal (milk duct) removal. That was supposed to be all. I just saw a very small amount of bloody drainage on my bra. I mentioned it when having my mammogram and I was on the fast track for the surgery. I thought they would say to watch it. I was terrified at the suggestion that something immediate and drastic should be done. I was a total crying wreck. I had the surgery the next week. I wasn't told what to expect afterwards. I was shell shocked with the whole experience. Since then, I have researched and found there were some tests that could have been done and it didn't necessarily have to go that way.

I had the surgery in the Spring. Six months later I had the follow up very painful mammogram. It was clear. I did not go back to the surgeon that preformed the surgery as I was disappointed in pretty much everything. I was told later he wasn't a breast surgeon, but a general surgeon. I was in such a terrified state, I didn't even check myself. I went with who was referred at the time. I would have preferred a breast surgeon under the circumstances but what is done is done. I have since gone to a breast surgeon and an oncologist to get evaluations. (The results from the ductal removal were benign with atypical cells.)

So I will have some questions following the breast MRI as to what exactly was done and why I am experiencing the lymphoedema. It's hard to get information on cases like mine. It makes me think it might be unusual and I'd like to know more. I believe it is from the scarring from surgery and additionally the extreme pressure on the surgery site that has increased the pain and swelling since. I'd just like some answers and a plan.

Anyway, thank you for "listening" and telling me what you know. It helps to hear from someone that has gone through it.
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Old 01-15-2012, 05:06 PM   #213
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Ocean Annie - . Sorry for the pain you are experiencing. Hope the MRI will shed some light on your symptoms. wishing you all the best.

Lisa - how are you feeling?

Sha - hope you and R. get to skype again soon.

Candy - hope your neck is not too painful

Well I guess we are rooting for the Giants right now

I have not been eating or sleeping well at all. I know dh is affected so much too but tries to put on a brave front. Hopefully on Tuesday we will have answers to some of our questions and that a good plan will be put into place. I am praying so much. This whole situation is so draining to me both physically and emotionally. That night is ds basketball game so we might go and see it.

Hopefully tomm. we can go return some of the christmas stuff the ds did not want.

GAGWTA
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Old 01-15-2012, 06:03 PM   #214
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Annie, is your swelling just on one side, and is that the affected side (the side you had the surgery on)?

Do you have swelling anywhere else? You said your weight is stable otherwise? (Other than the 2lbs you mentioned before?)
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Old 01-15-2012, 07:19 PM   #215
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Quote:
Originally Posted by luvmarypoppins View Post
Ocean Annie - . Sorry for the pain you are experiencing. Hope the MRI will shed some light on your symptoms. wishing you all the best.

Lisa - how are you feeling?

Sha - hope you and R. get to skype again soon.

Candy - hope your neck is not too painful

Well I guess we are rooting for the Giants right now

I have not been eating or sleeping well at all. I know dh is affected so much too but tries to put on a brave front. Hopefully on Tuesday we will have answers to some of our questions and that a good plan will be put into place. I am praying so much. This whole situation is so draining to me both physically and emotionally. That night is ds basketball game so we might go and see it.

Hopefully tomm. we can go return some of the christmas stuff the ds did not want.

GAGWTA
Thank you. I hope you get the answers you need and a plan in place too. I know the waiting can be unnerving.

Quote:
Originally Posted by Pea-n-Me View Post
Annie, is your swelling just on one side, and is that the affected side (the side you had the surgery on)?

Do you have swelling anywhere else? You said your weight is stable otherwise? (Other than the 2lbs you mentioned before?)
The swelling is just on the side that had surgery. It seems I *do* have more swelling in my chest area prior to that time of month. I don't know, I'm probably more aware of it. The lymphoedema + the monthly swelling is a lot to me. Overall across the board the swelling is prominent in that one side. The breast surgeon confirmed it.

My weight is pretty stable.

I'm just very concerned with the pain I have experienced since the surgery/mammogram double whammy. It is localized. I have a full feeling in that one breast that is constant. I went through a period of questioning (to myself) the pain after surgery in that one breast prior to periods. I calmed myself down realizing that it was probably the expansion of scar tissue that contributed to it. I had no conversation as to what to expect post surgery. I was disappointed in that.

The pain that came about after the mammogram was and is different. It has been a throbbing and at times stabbing pain. The swelling has increased since the mammogram too. I can't imagine the pain and swelling I have now did not come from the mammogram. The pain with that mammogram was 100x worse than any post surgery pain I experienced. Anyway, I take an over the counter anti-inflammatory prior to going to bed now. The pain had awakened me from sleep. The anti-inflammatory helps.
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Old 01-15-2012, 11:36 PM   #216
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Laurie, did you see this thread? http://www.disboards.com/showthread.php?t=2859233
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Old 01-15-2012, 11:51 PM   #217
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Originally Posted by OceanAnnie View Post
The swelling is just on the side that had surgery. It seems I *do* have more swelling in my chest area prior to that time of month. I don't know, I'm probably more aware of it. The lymphoedema + the monthly swelling is a lot to me. Overall across the board the swelling is prominent in that one side. The breast surgeon confirmed it.

My weight is pretty stable.

I'm just very concerned with the pain I have experienced since the surgery/mammogram double whammy. It is localized. I have a full feeling in that one breast that is constant. I went through a period of questioning (to myself) the pain after surgery in that one breast prior to periods. I calmed myself down realizing that it was probably the expansion of scar tissue that contributed to it. I had no conversation as to what to expect post surgery. I was disappointed in that.

The pain that came about after the mammogram was and is different. It has been a throbbing and at times stabbing pain. The swelling has increased since the mammogram too. I can't imagine the pain and swelling I have now did not come from the mammogram. The pain with that mammogram was 100x worse than any post surgery pain I experienced. Anyway, I take an over the counter anti-inflammatory prior to going to bed now. The pain had awakened me from sleep. The anti-inflammatory helps.
This reminds me of myself. I still have pretty uncomfortable pain in my breast 8 years after my surgery. It still interferes with my sleep (I like to sleep on that side) and look out if someone hits it by accident or something. Ouch! I also had lymphedema early on.

In my case I developed a hematoma after the surgery and because I had to go right into chemo it never healed right. They said if it weren't for the chemo they would have gone in to evacuate the hematoma. Anyway, said hematoma has now turned into a seroma and you can feel it in there and see it on my mammograms and MRIs, etc. - they always take extra long reading my films because of it. My breast is basically chronically uncomfortable always. It was also swollen for the better part of a year or more. (Of course I also had radiation after the chemo so that just made it worse.) I'm still glad I have it, but it lets me know it's there. (Double edged sword, I guess.)

The lymphedema was in my arm and was a result of the axillary node dissection (I had 8 nodes removed) and subsequent radiation. This destroyed the normal pathways that lymph travels. I had to go to PT for about 8 weeks for special massage to "teach" the lymph a new pathway to leave my arm again. Thankfully it worked. I usually wear a sleeve when I fly, though, because for some reason high altitude (and salty foods) make it worse. Have you flown recently? I'd assume your diet was off over the holidays as far as salty foods go. Perhaps it was a coincidence that the mammogram was at the same time as the holidays and it was really more salty foods than the mamm? Or maybe a combination? It's possible, if it is lymphedema, that a course of PT will help it.

I'll be honest, I've never heard of lymphedema without removal of lymph nodes and/or radiation to the area, but as my oncologist likes to say, "Stranger things have happened", lol. Maybe some pathways out of the breast were damaged during the surgery and are near the lymph channels under your arm somehow? Hmm. If it is lymphedema, you should be helped with exercises for it and PT, I would think. Then be careful when you fly and eat salt, etc. I doubt you need a sleeve but it probably wouldn't hurt to have one on hand. Insurance should cover everything.

Quote:
I went with who was referred at the time. I would have preferred a breast surgeon under the circumstances but what is done is done.
That's a shame. Did you ask the breast surgeon what he would have recommended had you come to him first?
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Old 01-16-2012, 08:33 AM   #218
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Laurie, did you see this thread? http://www.disboards.com/showthread.php?t=2859233
Thanks for posting the link. I just commented on the thread with a different point of view from other posters. I wonder if I will get grief from doing that?
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Old 01-16-2012, 08:49 AM   #219
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Originally Posted by OceanAnnie View Post
Thank you. I hope you get the answers you need and a plan in place too. I know the waiting can be unnerving.



The swelling is just on the side that had surgery. It seems I *do* have more swelling in my chest area prior to that time of month. I don't know, I'm probably more aware of it. The lymphoedema + the monthly swelling is a lot to me. Overall across the board the swelling is prominent in that one side. The breast surgeon confirmed it.

My weight is pretty stable.

I'm just very concerned with the pain I have experienced since the surgery/mammogram double whammy. It is localized. I have a full feeling in that one breast that is constant. I went through a period of questioning (to myself) the pain after surgery in that one breast prior to periods. I calmed myself down realizing that it was probably the expansion of scar tissue that contributed to it. I had no conversation as to what to expect post surgery. I was disappointed in that.

The pain that came about after the mammogram was and is different. It has been a throbbing and at times stabbing pain. The swelling has increased since the mammogram too. I can't imagine the pain and swelling I have now did not come from the mammogram. The pain with that mammogram was 100x worse than any post surgery pain I experienced. Anyway, I take an over the counter anti-inflammatory prior to going to bed now. The pain had awakened me from sleep. The anti-inflammatory helps.

I am hoping what you have is not true lymphedema, and WILL resolve with time and the attention of a PT who specializes in treating post surgery swelling. I am not pushing a massage technique but I went back and reread the services details on the massage website I mentioned and they do offer pre and post surgery massage (what they call the LMD method), so I betting that there are many surgical patients that deal with swelling. I do like the idea of using a PT though, as Linda did, someone with credentials with dealing with swollen tissue rather than a massage therapist. I just found it interesting that I just found out about this particular group doing massage and that specialized in this area.

I am glad you are doing the MRI, it should reveal I think what is going on. Please let us know how this unfolds, and I apologize for being lazy and not going back and reading your prior posts about what type of surgery you had last year. I hope you get to the bottom of this soon.

Thanks for posting.

Laurie
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Old 01-16-2012, 09:28 AM   #220
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Originally Posted by Pea-n-Me View Post
This reminds me of myself. I still have pretty uncomfortable pain in my breast 8 years after my surgery. It still interferes with my sleep (I like to sleep on that side) and look out if someone hits it by accident or something. Ouch! I also had lymphedema early on.

In my case I developed a hematoma after the surgery and because I had to go right into chemo it never healed right. They said if it weren't for the chemo they would have gone in to evacuate the hematoma. Anyway, said hematoma has now turned into a seroma and you can feel it in there and see it on my mammograms and MRIs, etc. - they always take extra long reading my films because of it. My breast is basically chronically uncomfortable always. It was also swollen for the better part of a year or more. (Of course I also had radiation after the chemo so that just made it worse.) I'm still glad I have it, but it lets me know it's there. (Double edged sword, I guess.)

The lymphedema was in my arm and was a result of the axillary node dissection (I had 8 nodes removed) and subsequent radiation. This destroyed the normal pathways that lymph travels. I had to go to PT for about 8 weeks for special massage to "teach" the lymph a new pathway to leave my arm again. Thankfully it worked. I usually wear a sleeve when I fly, though, because for some reason high altitude (and salty foods) make it worse. Have you flown recently? I'd assume your diet was off over the holidays as far as salty foods go. Perhaps it was a coincidence that the mammogram was at the same time as the holidays and it was really more salty foods than the mamm? Or maybe a combination? It's possible, if it is lymphedema, that a course of PT will help it.

I'll be honest, I've never heard of lymphedema without removal of lymph nodes and/or radiation to the area, but as my oncologist likes to say, "Stranger things have happened", lol. Maybe some pathways out of the breast were damaged during the surgery and are near the lymph channels under your arm somehow? Hmm. If it is lymphedema, you should be helped with exercises for it and PT, I would think. Then be careful when you fly and eat salt, etc. I doubt you need a sleeve but it probably wouldn't hurt to have one on hand. Insurance should cover everything.


That's a shame. Did you ask the breast surgeon what he would have recommended had you come to him first?
I have a little bit of medical background, enough to be dangerous to myself. I do realize that and I try like anything to research, research, research. I was at a low point when I went for my surgery and put everything in my radiologist's hands. I won't do that again. I know I need to be on top of it.

My concern now is that there was damage with the healing process due to the mammogram. I am concerned about a hematoma or an abscess in addition to lymphoedema. Maybe the lympohedema is not the primary thing and could possibly resolve. Maybe the pain and swelling is from something else that needs attention. For those reasons, I am looking forward to the MRI.

I couldn't find any information on lymphoedema in relation to my circumstances. I guess it isn't out of the realm of possibility that it isn't lymphoedma at all, but presents like it. I just hope against hope that whatever it is, it's treatable for some relief.

I didn't ask the breast surgeon what he would have recommended if I had come to him first. He knows the surgeon that performed on me and stated he likes him. Between that and not having the information on what exactly was done (MRI) it seemed awkward to go any farther at the time.

Thank you for your post. Your case does seem kind of similar to mine in symptoms. It's good to know there are things to do to manage lymphoedema if in fact that is the case. I'm glad it's manageable for you.

Quote:
Originally Posted by snappy View Post
I am hoping what you have is not true lymphedema, and WILL resolve with time and the attention of a PT who specializes in treating post surgery swelling. I am not pushing a massage technique but I went back and reread the services details on the massage website I mentioned and they do offer pre and post surgery massage (what they call the LMD method), so I betting that there are many surgical patients that deal with swelling. I do like the idea of using a PT though, as Linda did, someone with credentials with dealing with swollen tissue rather than a massage therapist. I just found it interesting that I just found out about this particular group doing massage and that specialized in this area.

I am glad you are doing the MRI, it should reveal I think what is going on. Please let us know how this unfolds, and I apologize for being lazy and not going back and reading your prior posts about what type of surgery you had last year. I hope you get to the bottom of this soon.

Thanks for posting.

Laurie
Thank you Laurie. I appreciate the information you and Pea-n-Me have shared. I will let you guys know the results of the MRI.

Thank you both again for telling me about what is available and what works for you. Once my diagnosis is confirmed, I will have a starting point. I can't thank you guys enough for that.
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Old 01-16-2012, 09:50 PM   #221
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When we bought our new computer, DH set up only one user. This quickly became a problem as I really don't want his contacts or his calendar as they are both far too huge.

I spent the better part of the day today setting up a separate user name for myself on our new mac, with the help of an in store "genius" specializing during a one to one training session, and then after speaking to 4 people over the phone. The fourth guy was the charm. He helped me get the 11,000 plus digital pictures and all my albums over to my user name so I can organize to my heart's content, got my new separate iCloud account up and working, and helped me move the syncing operation from the DH's side of the computer over to mine.

This dude was great, he even gave me his direct phone number and email. I sent a glowing review to his boss.

Over the weekend we figured out how to scan our non-digital pictures.

I am straining this ancient brain far past its capacity to learn.

Apple is going to be losing money on me.

Too bad.
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Old 01-17-2012, 11:40 AM   #222
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Laurie - sounds like you are really tech savy. I am not for sure.

Dh is suppose to be getting a Mac for work. Not his choice but he does not know if all his software can run on it so we shall see. The IT people need to get back to him.

Please pray for our family today. I am trusting God but I know I am probably going to have my heart broken some more after I hear all that will be said to us today.

GAGWTA
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Old 01-17-2012, 01:20 PM   #223
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Thinking of you, MaryAnn.
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Old 01-17-2012, 01:54 PM   #224
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Old 01-17-2012, 02:04 PM   #225
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