June 2016 Surgeries!

Maya15

Tsoebbin, that's scary! Great news about the lymph nodes though.

I woke up in the middle of the night in pain and couldn't get back to sleep. Turns out my upper back near the armpit is all puffed up, looks like fluid. My heart sunk, one more thing to deal with. At this point I'll take anything that's temporary (reaction to TE fill, seroma?) but I'm hoping it doesn't turn into something permanent like truncal lymphedema.

Lolliipop

tsoebbin,
How awful! I can't believe you went home the same day of your surgery, I stayed two days for my BMX, which I think is pretty standard. Glad you are doing better. Rest and take care of yourself.

FUBC

wow tsoebbin, i hope all goes well for you soon

scotbird thanks for the well wishes

Maya, I doubt you can see Lymphedema this early on. Maybe its a seroma...did you call your doctor?

Maya15

Saw my MO, she thinks it's probably a reaction to the TE fill, but nothing serious.

FUBC

Never heard of a reaction to TE fill before. I had another fill today...small, 30 cc. I'm crossing my fingers I dont get the horrible pain I had after the first fill. Took my narcos today and will continue taking them for the next 3-4 days

Maya15

What she meant by a reaction to TE fill is that everything is very tight in chest area and the current hot, humid NY weather causes swelling, so things are not "flowing" as they should. My cording has also got worse over the last 2 days, so I will see what my physiotherapist says.

FUBC

I have been massaging the cords myself. Very gently , using light strokes in outward direction, away from the armpit. It has gotten way better. I'm very very careful when I do it though. One has pretty much dissolved. Still working on the second on my right armpit

Mom2fourplusmore

I haven't had a fill yet. Does it hurt? Does it cause spasms again? And what is cording? I'm nervous about any more pain. The last week has been horrific

barbski60

just got back from physical therapy - very soothing massage - not what I expected at all. Thought I'd be doing exercises. Well worth the time.

Lunderwood

I had my first TE fill yesterday. I wasn't sure what to expect but the actual fill process was easy and quick. Due to thin skin I did not have any fill when the TE was placed during surgery. My first fill was 60cc and my nurse said our goal is only 200 so I am well on the way! I had some strange muscle contractions a few hours after the fill. (it reminded me of when your eye twitches involuntarily) Per the PS suggestion I took 1/2 tablet of muscle relaxer last night. I was somewhat uncomfortable during night but no pain. The contractions and tightness has improved greatly today. My PS says I can have next fill in a week as long as it is tolerable.

Maya15

I think everyone's different for the fills. I felt nothing either before or after, chest is tight but I haven't had any pain.

Cording is when your lymphatic tissue is disturbed by the surgery and forms cords that feel like tight strings under your armpits and down your arm. I can see and feel mine. They formed about a week after surgery and I could feel about 20 going all the way down the arm. Wasn't able to extend or move the arm at all, but 2 weeks of PT has done wonders, now I'm down to 2 or 3 cords that I can feel.

My PT sessions have been 50% massage and 50% stretching excercises for the cords. Today as I have swelling she taught me manual lymphatic drainage. It didn't seem to make a difference during the session but an hour afterward it seemed much better.

Lolliipop

I'm jealous of all you ladies already getting you fills. I have to wait 3-6 months just for the expanders to be placed. I won't be done with reconstruction until next year.

Hopefloatsinyyc

what a long day! In our city we have a huge event called the Calgary Stampede... And it started today and goes the next 10 days. We are one of the biggest sponsors, and so I am hosting people near every day. Today was the first day I was dressed up and standing/put for almost 7 hours. Thankfully they provide me a driver so I don't have to worry about that- but exhausting.

Upon getting home, my BS called me because we had both been anxiously been waiting for my final pathology. As we thought, my IDC in the left breast was just over the 3 cm, and my lymph nodes were clear.... But what neither of us expected was, they found DCIS in my right breast. I'm so thankful I went with a BMX because had I not, we would have been letting that tumor grow.

Now I await the call from my oncology team to arrange an appointment to discuss my chemo plan.

FUBC

Hopefloat, thats great news...your lymph nodes are clear ..yay :-

Mom2fourplusmore

So I decided I didn't want to be trapped anymore. I went out to dinner and went to see a movie. I did pretty well. I have a ton of pressure on my chest but I did well otherwise. I feel a million times better now that the spasms have stopped. Not sure if they were caused by the tight bandages but I'm just glad they seem to be gone. I got a call from my surgeon today. She couldn't believe how great I sounded. I've made huge strides in just a couple days. She also told me what my pathology report said. The good news is that the lymph nodes are clear but it's a good thing I had the BMX. We knew about 2 tumors already by they found 4 of them. They were different types of cancer. I can't believe we couldn't see all of them before. That seems crazy. She says I'm still a stage 1 because they were small. I'm not sure what this means overall. Does this change the game plan at all? Does it change the chances of reoccurring? I'm not sure what this means. It still seems like a crazy joke someone is playing on me. I felt great before all this. In fact I felt better then I have felt in a long time. It's weird to do all this for a disease you can't see or feel. I'm not sure when or if it will ever sink in.

Maya, thanks for explaining cording. I'm glad to hear that you are feeling better.

And I'm so glad to hear about the clear lymph nodes for you guys. That's one less stress. Hope you all feel 100% soon

Clauclau

hi all,

I finally got the chance to read all your posts, and boy do I feel somehow lucky that I didn't have too much pain, malfunction drains or some reasons why I should be kept at the hospital. At the same time I hear each one of you and hope this uncomfortable feeling goes away soon.

I would like to share the latest with my process, and make this a chain of hope that we all will do fine sometime soon.

I went to my first doctor's post op. Check up yesterday and he said everything is healing accordingly. I still have my both drains. One that looks like it has grape juice in it, and the other one that has grapefruit juice in it ( so I joke!).

Today I got a call from my surgeon and he broke down the pathology test with bigger tumor than initially biopsied but negative for areas surrounding it and negative for lymphs removed. Overall, this is great news. I have an appointment to see the oncologist and radiologist next week. I am not sure if regimen will be changed a little or not at all.

It's been 8 days since the surgery DMX and I am still sleeping at the recliner. My lower back was killing me, my chest is still numb but I feel signs of healing through the itching skin, and fewer pain killers I am taking. Anti biotic is just over, so I few I am moving along to the next step.

I saw the movie " do you believe? " tonight and it brought me some piece of mind knowing that God has some plans for all of us. Eventually we will pick up the pieces to put together, but now I am taking one day at a time.

I read some of you had instructions to not shower within 24 or 48 hours after drains come off. The moment I got the excessive cotton out of my chest and refresh the surgical tape, I took a "shower" with a special soap. My back was in need of that. I am planning on having one full shower per week, unless I hear something different.

The thing I miss the most is to be able to drive. When can we do that? Any idea? Are you all mostly resting or doing things from home ? I would appreciate if we could exchange some thoughts even if it's not doctors suggestions. Just speaking from the heart.

Good luck to all of you and gang in there. We are not alone!

Love to all

Clauclau

I stayed one night only after a DMX and the only reason the hospital was talking about keeping me there for an extra night it was due to my low blood pressure ( 70x 40) . Once it went up a little bit, the hospital allowed the discharge. I am ok with that!

FUBC

Clauclau, good to hear your lymph nodes were clear also.

I drove on the 10th day, I drove to my PS office and that's when I got the first fill that sent me into a roller coaster of horrible pain. That lasted for another 10 days so I didn't drive much after it. I felt better a few days ago, had a 2nd fill on thursday and yesterday I had a full long day of driving, doing some work, meeting a friend for dinner, went to do my hair and nails...Yes im still sore and my right breast hurts when I drive, but I keep massaging it while driving. I have had many guys look at me funny while stuck in traffic as i am massaging but I really don't care...Next monday is a month from my surgery. I am also taking a shower every other day but that's because I am mostly home.

The problem with driving is your shoulders are not fully flexible and it can be dangerous if you need to maneuver your car in case of an emergency. In the beginning I was driving slow and not really changing lanes...it got better with time.

you'll know when you're ready to drive or your doctor should be able to tell you when it's ok for you to drive. You can also drive locally, around your house and see how you feel. Good luck !!

Mom2four, I have read many posts in this board and I have read many cases of recurrence even on stage 1 and after double mx. I am a stage 1 with clear lymph nodes also, of course our chances of recurrence are low but one never knows. My BS couldn't guarantee that it wont come back. My fear is if it has spread in my chest wall, which means now it cant be visible, but it might be in a few years ...and what if I don't catch it on time.... But you know what, I thanked God mine was stage 1 and hasn't spread yet. There are other women here with stage 3 and 4. My heart goes to them that they are going through more aggressive treatments.

So for now I am just thankful, if it comes back (knock on wood) at least I will know what to do. The past 2 months for me have been hell, so nothing after this experience will scare me...

Glad to hear you're out and about...going out last night helped me a lot mentally...Enjoy the weekend

Clauclau

Dear FUBC

Can you describe better your first full experience that took you to a pain roller coaster? I have an appointment with PS next week on 7/14.... I am not sure if this will be my first fill. It will depend on oncologist and Chemo regimen. By the way, are you going through Chemo while reconstructing the breast?

Is there anyone in this group managing all the aspects of Chemo ( side effects) and TE with the pain associated with it?

FUBC

ClauClau, my right side, after my first fill, was hurting a lot. There is one spot (on top) of my right breast that was hurting and was and still is swollen. That spot still hurts more than everything else, but now is manageable. The pain started about 2 days after my first fill. The nurse said it wasn't a seroma, so it might be a muscle spasm. In fact, it does feel way better when I massage it. Everyone here seems to have different issues, and some have no pain at all, so it doesn't mean you'll have same or any issues.

I am seeing my MO next tuesday so I won't know if my treatment includes chemo until next week. However I was told chemo shouldn't interfere with the expansions.

Hope this helps,

SPECTER55

FUBC, not to worry. I waited 48+hours and continued my antibiotics one extra day after drains came out. Now I'm having a piercing pain on my right side, dang it. Tramadol helps it, so I'll discuss it with my PS when I get my first fill next week.

tsoebbin

Can I just say... these drains are a darn pain?! I have 3 left... one failed so my surgeon walked my husband through the steps to remove it. That was an experience we won't soon forget.

The 2 on the right are slowing down and light colored... hope they come out Tuesday when i see the BS.

The one on the left is a dark red/brown color but it's the side that had the second surgery to stop the bleed a week ago. I think the old yucky blood from the series is still finding it's way out

I'm ready to sleep on my tummy again!

tsoebbin

Hmmmm... my last post was whiney. I am really doing better each day and grateful to be recovering!

So.. let's compare our surgeons restrictions at the 7-10 day mark. I'm allowed gentle use ofy arms, and can very slowly raise my right arm to scratch my head. My left arm is a bit behind but I can prop it up on pillowa now.

💪💞💪💞💪💞

Mom2fourplusmore

tsoebbin, don't apologize for being whiney. This is the place to put it all out there because we know how you feel. This journey isn't anything any of us had on our bucket list. Some days we will be energized and ready to fight the battle and some days we will feel overwhelmed and drained. Let's not sugar coat our feelings. We have to be strong at home but here we can just be us.

I like your idea of restrictions. My dr said I could take a shower. It seems wrong to me because I still have those drains. And I can raise my right arm more so then the left. But it is getting better. I'm hoping to be able to put on a pullover shirt all by self soon. Ahhhh the little things. I can't wait to drive. I just need to get out of the house . Not sure when that happens.

Dawn41

all the different restrictions from different doctors...mine told me to take showers our bodies need soap and water every couple of days. Thank goodness she was ok with showers I don't know if I would have been able to wait two weeks without one. Had the first appt last Wednesday and 5 of the 6 drains came out and I felt like a brand new woman...the last drain should come out this Wednesday, output is low😃. Have been home two weeks today and I still don't see my bed in site my recliner has been my best friend😃

tsoebbin

My rear end is getting numb! 😎

Dawn41

i can relate, my kids look at me like I'm crazy when I get up to do a lap around the house

tsoebbin

Any good Netflix or Amazon prime series suggestions?

Dawn41

To be honest I have been home two weeks today and have not had Netflixs on at all. I have been watching a lot of the Investigation ID channel.

tsoebbin

I haven't heard of that channel. Sounds interestingg.

How is your DIEP reconstruction DAWN41?

I don't think I'll do any recon at this point. Who knows!?!?