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Traveltext

Sorry Redder, I missed your question about why they took the lumps nodes. Anyway, they only do this if they think they are cancerous. They mast have thought this. It's too bad they took them, but good news that the pathology found them to be benign.

You would be quite sore post surgery, but things will improve with time. The drains are a nuisance, but follow the draining instructions and go to a clinic and the first sign of infections or if you are at all worried.

The most important thing you have to consider now, is to be aware that your arm is a lymphedema risk because without lymph nodes infections to your arm can cause swelling. Be sure to ask your doctor about a course of action to prevent this, because once you have lymphedema, it is a lifetime condition.

More questions are very welcome.

Reddeer56

Traveltext,

Thanks for the reply. I am aware of lymphedema and its troubles. So far my arm is not swelling up. The Dr.'s assistant thought there might be some swelling in the triceps area, but I cannot say for sure. Definite swelling in the right breast and right side, looks it is not being collected by the drain at all. Feels like there is a big ball of some kind in my armpit area. Strange kind of feeling. I am hoping a lot of this will go away on its own. I am just now sure how the heeling process goes for something like this? Dr. Google is not much help except pointing to breast cancer patients who have this done a lot. Which is why I came back here for some help with this.

To make matters worse, I am a MS, Diabetic, Lupus patient. I fall allot, you should have seen me trying not to fall after the 2 hernias were fixed? Looked like a drunk person staggering out of the bar at last call!! The hospital had me decked out in an orange checkerboard gown. Orange for fall risk patients. You could not help but spot me!! Spent 3 days in the hospital before I could go home. They actually asked me if it would be ok to send me home with a blood pressure of 66/47, I said no. I was very surprised they would even ask such a question.

Traveltext

When they take your lymph nodes they sever the nerves in the region and you'll find this lack of sensation disguising pain and any warning your brain may receive about trouble in that area. If you have any concerns about the healing process, take yourself to an emergency clinic for investigations. Wednesday for your doctor is a while away.

MinusTwo

Sorry to butt in, but you should consider truncal LE. And get a referral to a certified LE/PT. That's what I ended up with. Below is a llnk that a number of BCO people worked on.

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

Traveltext

Thanks for pointing that out MT.

Reddeer56

Minustwo,

Thank you so much for the great tip. I have already spent about an hour looking at the site and it looks really good. Lots of information about what I need to review. Hopefully I will be able to understand and remember it. I have severe cognitive issues due to MS. But, I will spend allot more time reading. I have already found a place to go that is nearby if I need to go see someone. Not sure if insurance covers this, I am on a Medicare PPO plan? Time to go drain my bulb!

Thanks again!!

Reddeer56

My drain was removed last week and I was leaking lymph fluid in the hole that was left. The whole right side of my shirt was soaked. The good thing is it stopped by the end of the day.

I have been referred to an Oncology Therapist to manage the lymphedema in my right breast and side area. I am still having trouble with my right arm. I can see and feel the tendons in my armpit and it hurts to move or reach for anything. Hopefully they can help get this under control.

I am still swollen in the area where the removed the tumor. Its been over 4 weeks now since they removed the tumor and lymph nodes.

Can anyone tell me approximately how long the swelling takes to go down?

My appointment with the therapist is 2 weeks away. I am actually looking forward to the visit!

MinusTwo

Redeer - Please go to My Profile and post your diagnosis & treatment to date.

Sorry you appear to have lymphadema. Lucky that you have a doc who seems to know something about it. That is rare. At four weeks post surgery, much of the swelling could still be stitches healing inside. Was the surgery ALND? Or did you have a mastectomy?

If the swelling is all LE, it will not likely go down until you are in therapy. Be sure you are going to a certified, trained lymphadema therapist. Below is a link that may help with some answers.

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

Reddeer56

Hi MinusTwo, My tumor was benign and so were the lymph nodes they removed. They did a complete ALND and I am having problems because of it. I did visit the website you mentioned, which is very informative. There should be a sticky on it. The place I have been referred to Specialize in treating cancer patients and Lymphedema. Here is a link to the place I am going: Oncology Rehab.

It looks like most of the therapists have some type of Lymhedema training. I hope they can help my arm, I can only lift it so high before the pain starts in. Good thing I don't hang wall paper for a living.

Filling out the profile page does not seem appropriate since I did not have breast cancer unless I am missing something. My brain does not work right any more due to cognitive issues with MS.

Tinkerbell49

Hi Reddeer56

I'm so sorry you are having to deal with all this. Glad your results came back benign. I also had 3 lymph nodes removed that came back reactive. I did not have breast cancer I had adh (atypical cells) which means I'm high risk for bc. I believe what you are feeling under your arm is called cording or also called auxiliary web syndrome. I had 2 cords after surgery but now they are gone. It can be very painful they look like tendons but they are not. That's why it's very important that you see a certified lymphedema therapist right away. They can massage and break the cords so you can get your range of motion back and also drain the fluid with manual lymph drainage. I went right away, the first therapist was not certified but she was able to help until I found a Lana certified therapist. Luckily I don't seem to have lymphedema. You are still healing and swelling is normal but the quicker you get therapy the better the outcome. Good luck and i hope you feel better soon.

Tinkerbell49

ps: Reddeer56

There are good lymphedema forums with ladies who can give you a lot more information. I'm new to all this and they were very helpful.

Reddeer56

Duh, I just Googled lymphedema forum and the results brought me back to this forum!! I have looked this form I don't how many times and never saw the Lympedema section!!! Great stuff to read and I am reading it.

Reddeer56

I think you are right on "cording" being the problem. I have spent some time researching it and that appears to be what is going on. It is either one large cord or multiple smaller ones all clustered around each other. Thank you so much for this information as it makes perfect sense now. I cannot wait for therapy!!!

Traveltext

Red deer, is it fair to say that you've been treated for bc and found to have only a benign tumor?

Reddeer56

Traveltext, I think that would probably be a fair statement. My Dr. did send me down to the leading Breast cancer diagnosis center in Colorado for tests. The Dr. sent me back to it again earlier this year, which resulted in numerous tests with no clear diagnosis. Tumor had increased by 1 cm by the time they took it out. It was wrapped around and through the lymph nodes, which is why the took it all out. Pathology turned out to be benign. So now we have lemphadema to deal with.

I think one of the cords gave way last night while laying in bed. For the first time I moved my arm up over the shoulder and left it that way. Something popped and this morning the pain is not as bad as it was yesterday. Range of movement is better this morning to. Looking forward to seeing the therapist.

I have another appointment with surgeons office next week, unfortunately it is before the therapists appointment so won't have any therapist information to share with them.

Traveltext

Reddeer, Well good luck with the LE treatment. You are lucky the growth was benign, but keep up your surveillance.

Fiddleman

Reddeer, I haven't checked these forums for a while, so I hope you don't mind my putting in two more cents worth at this late date. I had a right mastectomy, following a diagnosis of Stage 2 IDC. That was followed by a complete lymphectomy, followed by chemo and rads. I was one of the lucky 40% that consequently developed LE soon after surgery (6/21/16). I too had that pain running under the arm and was given Tylenol 3, which helped considerably. I did not have the cording and this is the first I've heard of that condition. Right now I'm seeing an LE therapist 2x per week (it started out as every day for a while) and am still fighting the swelling over a year later. As my handle suggests, I play the violin, so attending to my bow arm is, oddly, of more immediate concern to me that the IDC. At least cancer's something I can fight with somewhat predictable results. LE, not so much. I may have missed it in previous postings, but how is your therapist treating the LE? I assume you are getting drainage massage. Are you wearing any kind of wrapping and/or LE sleeve and glove? Are you using a pump? Are you getting regular PT for upper body strength? I know you have a lot of other stuff going on, so maybe the latter might not be appropriate. So far, my swelling is reduced somewhat, but it's a hit and miss process. Some days are better than others, and there's nothing you can do that will bring predictable results. It's a very capricious condition. A friend of mine had LE and she said it took 17 months for it to finally subside! OUCH! Then there's always the possibility of recurrence, and/or infection if the arm gets injured. You need to be particularly careful to avoid even such seemingly small insults as a mosquito bite, and vigilant to treat them ASAP. Without lymph glands infection's an enhanced danger. Hope your treatment is going well.

Reddeer56

Fiddleman and other responders, Thank you for you message and I am sorry LE is till giving you problems. But it looks like your receiving the proper treatment.

My first appointment with therapist was last Friday. The therapist noted swelling right where I thought there was and she confirmed the cording. She thinks the cording is attached to the rather large lump was left where the tumor was. She did some manual massaging, used some type of machine which acted like suction cup and she trying to pull the lump outward if I understood her correctly. Then we did some stretching exercise. I was given two exercises to do at home and come back this week. It did help and I noticed the lump had reduced some. So things are looking up. Swelling in breast area is also down. No wraps or anything so far.

It turns out that this Oncology Therapist is part of Swedish Hospital which is where the surgery was done. The Lempadema specialist is also owed by Swedish Hospital. Julia my therapist is the Director for both of them.

Like I said I am suppose to go back this week, but Julia won't be there and they are suppose to call with an appointment, but so far no call.

Traveltext

My male bc mets pal Rob has had LE for three years now. It started three years post treatment after a mosquito bite got infected. Those with early stage LE should continue to do everything possible to keep it from developing further. Check out this excellent LE guide HERE.

Reddeer56

Traveltext,

Thanks for the link. Good stuff in it and I saved the document for future reference. I keep reading to watch out for cuts on hand/arm. I work on and create Bonsai trees and I get nicks and cuts on hands all the time. I suppose if things get bad I may have to give them up. I used to have a really nice garden, but since I have MS it was just to hard to get down on the ground or bend over for any amount of time. So I gave away all of the flowers and switched to Bonsai trees. I can sit at a table and work on them and not get tired. I fall a lot to and get nicked up on the legs and arms to. My skin so thin that I get busted open if any things hits my skin. Just the other day the garden hose hit me in the front of my leg and busted me open in a couple places. So this LE will be interesting to see how it progresses if it does. My numbness is getting much better and so is the pain in the back of my arm.

I am going to keep on rolling down the Bonsai road until they tell me to stop!!!

Reddeer56

I just wanted to stop by and say thank you to all who responded my posts! I hope your all doing well. Sometime after finishing with the therapist I developed a frozen shoulder in 2018 on my right side. Very painful, went back to the therapist for it. I ended up seeing two therapists at the same time. My MS Dr. sent me for physical therapy for leg and foot problems. I figured out on my own stretching exercise for my shoulder, it turned out my left shoulder was in bad shape to. I did my stretching exercising for both shoulders. They both slowly got better after working on both shoulders. No problems any more with them. The therapist said my right shoulder was pulled out of shape and would not lay flat on the table, not to bad now. Still numb in the area around the tumor. LE still a problem in the breast area. The leg/foot therapist suggested a brace for my left ankle/foot which I did get. They also suggested using a cane. I have complied and I must admit I like both of them now. Cane has saved me from falling numerous times. MS is slowly getting worse and now heart valve is going out.

Thanks again and keep fighting!

Mike

Traveltext

Thanks for the update Mike. You sure have multiple health issues and I wish you well in dealing with them.

Reddeer56

Its been over a year now and I just wanted to stop and say I am still so grateful for all the help I received here! I hope your all doing well to.

I had kind of a shock today from the local hospital. They called to schedule me for an ultrasound on a left breast chest lump. They scheduled the appointment and said it would take around 2 hours for the whole thing. I said ok and then the call was over. I went outside and started painting the house and I started thinking about the time for an ultrasound and that just did not seem right. I called the hospital back and then they told me my Dr. ordered a Mammogram to go with it. You could have knocked me over with a feather over that news. I did not know I had this lump at all until I lost 27 pounds for no reason, none at all. Then this lump showed it self. It hurts off and on and so I went to the Dr. about it. So next month I get to start a new chapter in my book of adventures concerning lumps, ultrasounds and mammograms not to mention the unknown lurking characters (if any) hiding in the shadows!

Traveltext

Hi again Mike. This follow-up scanning is a wise precaution. Keep us posted re the results.