TRIPLE POSITIVE GROUP
Comments
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Welcome Windlass... so sorry you are here! I'm sorry I don"t have an answer about rads before chemo either. TonLee.. did you have a mastectmy? I just ask because I'm afraid to do any push ups for fear of developing LE...
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Well you showed me your so I guess I have to show you mine
I too have no fat above my belly button… we won't talk about my butt and thighs though.
You can see a little of the incision sticking out to the left. It's very flat now and really starting to lighten up since chemo ended. I put Vitamin E oil on it at least once a day.TonLee I love your necklace.
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Am I the only person who got a port in my arm? Mine seems to be the same size as both of yours... and I like both of your necklaces!
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Leanna,
Yes, I had a MX on the right side. I only allowed my surgeon to take 4 SNL though, so while LE is a still a risk, it is much lower than having the entire axilla removed. I developed a little "cording" when I started doing pushups, but have used lotion and massaged my arm, fingertips to collar bone, and it is almost resolved. I've read the trick to avoiding LE is to start easy, then build up...
Lago,
We have the same port! Well it looks the same anyway...I like your necklace too..you have some of the prettiest jewelry.
My necklace is a prayer box. (Someone asked me once if it was a microphone...lol). My youngest son opens it up and whispers into it. I love that I get to carry his breath upon my flesh...
Ok I know that sounds weird, but the idea is what I like...lol0 -
Oh I'm jealous! You have a port in your arm!! I'd much rather have that!
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TonLee - since rads when I workout my arm hurts in a band from armpit area down the inside of the arm to the wrist. I can feel that it's tight when I straighten it. Did yours feel like that?0
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Omaz that sounds like you have cording/webbing. I have it in both my arms but it was worse in my right (sentinel nodes only on that side). My right side felt just like that for a while. I had to gradually stretch that arm every day. I got the exercises from my LE PE.
Here's a link about cording/webbing. pictures too:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htmTonLee I love that he whispers stuff in there. How cute/nice.
Thanks regarding the jewelry. I purchase a lot of it at art fairs in Chicago or some of the shops that sell local art jewelry. They are my little personal pieces of sculpture.
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It didn't hurt Omaz, but it was on the border of being "tight" and hurting. Also when I lifted my arm above my head and flexed my biceps/tricep, you could see what looked like a cord or a fat vein going from the SN biopsy incision (under the arm pit) up the inside and toward my elbow.
I started doing heavy stretching, above my head, behind my back, along with massage every single day, and the cord is pretty much gone now....
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Yep, good link Lago...this pic looks like my arm did...but mine wasn't so extensive..only a about 5 inches toward the elbow.
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Thanks. I can't see anything like that but then I am not as thin as the woman in the picture. I will keep stretching and ask my LE therapist when I see her next. She does the massage so I would like she would have felt it wouldn't she?? The area actually hurts when I push on it in that band area. Hard to describe! I am glad you both understand!!0
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TonLee - I like the port in my arm... but I'm jealous you were able to convince them not to take all of the nodes... I literally begged and begged them not to take them all, but they wouldn't listen! Maybe I'll be happy about that 20 years from now! When I have my exchange surgery in May, the PS is going to transplant groin lymph nodes under my arm... hopefully we can wipe out LE as a SE of this beast's treatment!!! Lymph node transplant is still in infancy, but I don't see any risk in doing it!
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I have a question about the ports. Did they install them under general anaesthesia? I had arranged to have my port installed at the same time as the MX, while I was out cold, but at the last minute the surgeon couldn't make it. Now I'm stressed about the pain -- and creepiness factor -- of having it installed while I'm awake.
How bad was it?
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Windlass..scratch port off your things to worry about list...it's super simple. Takes about 15 minutes. They had me under a little twilight...just a little woozy. I got off the table afterwards, walked back to the changing area and went home. You don't feel anything and I was running around the neighborhood that evening. That seems to be the most common scenario....it's relatively simple for most everybody. Talk to your doctor about where you want it...mine let me mark my chest where it would not be visible below a tank top. Good luck...you will be fine!!
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windlass - I had mine installed with a twilight kind of anesthesia. I remember being in the operating room and talking about stuff, but don't remember what. I think mine took longer than 15 minutes but it wasn't very long. It did take me some time to get used to the port because I have large breasts and when I layed down they 'pushed' the port tube up so that was my challenge. I think with less breast tissue it would have been easier. I also marked the area where he could place the port. It is very good for all the infusions. I have a power port and so far, thank goodness, it has worked. Mine was installed by a general surgeon. I was nervous about it too so I know how you feel.0
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Leanna,
I totally lucked out with the nodes. I was scheduled for a MX in Sept, 4 days after diagnosis. I showed up, was prepped, in the gown, the surgeon came in and I decided NOT to do surgery that day. I didn't feel like I had enough information and didn't like his answers. So I dressed and told him I would get back to him in 2 weeks.
At the end of Sept the San Antonio Conference consensus came out ..the study saying that taking axilla is overkill in some BC patients. (ZOO11) The more I researched the more convinced I became it was unnecessary in my case.
Why? Because other than "staging" it wouldn't change a single thing. (And staging seems a poor reason imo since cancer can spread through the blood and the lymphs be clear!)
I was already going to get chemo (over 1 cm tumor) and if it was in ANY of my lymphs, radiation to the breast AND the axilla. I looked at stats on radiation to the axilla (Which were 5% lifetime risk of LE, as compared to LE for axilla removal, over 50% at 10 years out).
I took the study Z0010&Z0011 (which my surgeon hadn't seen yet) and my argument and went in to see him.
OMG.
You'd think it was HIS body...he argued, cajoled, threatened, and it took THREE visits before he FINALLY agreed to only take the Sentinels and no more than 4 total. (They only need 4 to stage so I felt it was a good compromise.)
He agreed with dire warnings about going against the "Standard of care."
He was so pissed off about it that he didn't even let the lab guy look at my nodes in the OR (which ended up all positive). He told me, "well they look normal. We'll see what the lab says. No use making the lab guy look at them in the OR since you refused axillary dissection."
So we had to wait two weeks for results and ended up getting them from my PS as an off the cuff..."Oh I see you have lymph involvement, which means Rads..."
My husband and I were agog.
But I get the last laugh. I saw the surgeon in the hospital the other day. He actually stopped and told me axilla dissection is changing in many BC cases, and that it will not be automatic for his patients ever again. (And this guy is young, oriental, and OLD SCHOOL!) I was thinking, no duh...I tried to tell you in Septemeber!!
But you know what? I'll prob. Get LE anyway...lol...that's just how I roll.
I hope your lymph transplant goes well. I'm anxious to know what it entails and hope you will share. That would be such a god send to women who have had numerous nodes removed. (What keeps you from getting LE in the legs though?)
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I think mine was installed under twilight too but all I remember is them wheeling me out and then the next thing I know I'm back in recovery ready to get dressed. We went out for lunch afterwards. By the time the doctor came back to check on me I was all dresses and sitting in a chair. My husband hadn't even made it back to the recovery room yet.
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Windlass,
My port was installed during my MX. (Though I had to fight for that too...my surgeon said it is better to do it outpatient so there is no cross-contamination.)
I am small up top and was one of the 2-3% of women who get a punctured lung from port insertion.....but from what I've read it is rare and wasn't even a potential complication on the paperwork I signed....(My surgeon was mad at me ... maybe he did it on purpose...lol).
Anyway, not saying that to scare you...just to let you know that having it done outside of the MX might be better from a cross-contamination stand point.
I love my port though. I can't imagine getting stuck every week.
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TonLee - GOOD FOR YOU! for being firm with your surgeon.0
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TonLee I asked to have it done at my BMX but they said there was too much going on with TE placement too. The BS nurse said it was the oncs call on the need for a port. I hadn't seen an onc yet… but of course I knew I was getting a port. Nodes on both sides and 1 year of herceptin = port.
But the surgeon that placed my port… that's all he does. Seriously! He told me about all the possible complications. He also explained that because I was thin/small he might have to put it in another location (including the neck, yuck). Granted that didn't happen.
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The neck? That would be horrible!
I had the MX, TE placed, SN biopsy, and port placed all during the same surgery. I insisted.
Then they had to cut open my side and fish a tube up above my lung to release the air the next day...had to stay in for 2 days...that tube was the most painful thing so far!
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Well I had BMX, level I nodes on left, sentinel on right and the TE's done all at the same time. I think it was 6 hours total. There was a lot going on.
Doing the port thing at another time wasn't a big deal. My port surgeon was even trying to get me start chemo the same day but there wasn't an opening. I did it the next morning.
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lago - You are a trooper!!0
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TonLee & Lago - Thanks for posting pics. Glad to know mine looks like yours! ha.
The only difference is that mine leads up to my neck rather than down towards my heart like a lot of people and you can see my scar at my neck. I'm annoyed with my surgeon for that. She originally told me it would go down towards my heart. When I woke up she said my "juggler" was a better vein. That's what annoys me most, I feel it when I turn my head.
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Mich,
Mine goes up as well..up beneath the collar bone...you can see it when I flex or move,,,,not sure why it doesn't show up here....
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You can ask for the port in your arm also... I don't know what made me ask for mine there... I think probably because I'm thin also and I didn't want it sticking out...
I will say that I suffered a lot of discomfort afterwards... had a huge bruise where they manhandled me to get it in... I'm sure they let an intern do it when I was loopy enough to not know the difference!! LOLTonLee - They only transplant about 2-3 groin lymph nodes, so a lot are left. I'm excited.. because yes, I read the same studies as you (after the fact) and thought, crap, I was right!!!
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Leanna is your dr. part of the MUSC? If so I think they are pretty cutting edge. The only other person I have heard of with a port in the arm was in CA. The mother of one of our teachers. Groin nodes being transplanted...you know that is cutting edge:) Let us know how it goes. libraylil0
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Morning guys....My hospital in Atlanta does the port in the arm too...if you request it. THe PS did it for a friend of mine since they went the nipple sparing, incision in the fold route. I was SO jealous...I had no idea I had these options. The arm port was a bit sore for her initially, but she is thrilled to have one less visible scar.
The lymph node transplant stuff is amazing....I had full axillary clearance and rads, so I stay worried. I was diagnosed a bit ahead of the research curve on nodes. I haven't had any issues yet, and hope it stays that way.
I did see my onc this week who proceeded with zometa. She strongly feels it's not good for anything but stronger bones based on the studies. She thinks Novartis did a great job in questioning the studies of who it was good for...just to keep the drug afloat. It can't hurt, so I will continue. My onc came in with a mask and gloves and informed me she felt terrible and thought she might have the flu...uh, helloooooo!!!! Cancer patients are all around with low counts, omg!! I am now on the 3 month checkup plan. I go in, put on a gown and get patted on the head. Waste of time.
It sucks going back into that chemo room for the zometa after you are done with treatment. My port is out and the knucklehead nurse blew 2 veins getting the zometa iv in. My arm is a bruised mess today!
I think I need to go find the Im grouchy and bitchy thread, lol. Some days this stuff just annoys the hell out of me and I am sick of it all!!! There is a very high energy kick box dance jam class in about an hour at my gym. I haven't made it since surgery a few months ago. I think it's time...great mood adjuster!0 -
Gee,
Bitch away. Sometimes it's the only thing that keeps the people around us safe
The whole axilla dissection thing...well, I refused it, but everymorning I wake up and my right hand MX side, is cold. I keep thinking...all that fighting I did to keep my lymphs, and I'll prob. get LE anyway for letting them take 4!!
It's a crap shoot.
But I am anxious to follow Leanna's progress. My aunt, stage 0, has LE so bad she can barely lift her arm. They took ALL her axilla and none of them were positive...she's a school teacher and that is her writing/dominant side. She's having a horrible time. I really hope this is something that can be done with success!!
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These are all great questions for my surgeon that I didint think to ask. We already know that I have lymph node involv. He took lymphs out when I did my port and I had 3pos. sooo will he mess with them during MX and rip a bunch more out? or leave them alone and let the rads do the work. I really need two good arms to be able to work. I will ask next week and probably voice my opinion.BTW had my first big herceptin dose last tues and by thurs was nauseous and weak for 3 days. Maybe its just all in my head, but I just dont tolerate these drugs very well, still nothing like chemo, very manageable symptoms.
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TonLee I don't wake up with cold hands. Actually I think my hands are warmer since surgery. I have mild LE (they think somewhere between stage 0 and I) in the left arm.0
