NOLA in September?
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It's SOP at NOLA to wrap before surgery. Dr. Massey will take extra precautions for you if necessary, if you're her patient. They insisted on wrapping one of my arms and I've never had any nodes removed--we flipped a coin to see which arm to wrap. Kind of silly, but hey, who am I to deny them practice.
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Jen, before my BMX, I met with my onc. Based on my biopsies and screenings, she determined I wouldn't need chemo (oncotype would be after, of course). I was ecstatic and bewildered at the same time, thinking cancer = chemo. I said something like I feel like I'm getting off easy without chemo. She said Whoa!! A BMX is NOT getting off easy!! I got the message. Then another type of tumor was found during surgery and I got chemo anyway. c'est la vie.
PinkHeart, I had my BMX and immediate DIEP over a year ago. Based on what we knew before surgery, thinking only sentinal nodes would be removed, neither arm was wrapped. I did get the education, the wrapping lesson, and massage after. Though I had 21 nodes removed, that arm was not wrapped for stage 2, or massage after. I did not have lymphedema, so I guess that's why. I also did not ask about it. These last couple weeks I've had some swelling in my hand, so I suspect I got it now. I will speak up for this next surgery, though, and I expect I will at minimum have some massage, and probably get wrapped.0 -
Back when I had my surgeries, 2008 - 2009, there was nothing in NOLA for LE concerns, I am happy that this has changed for the better! I woke up from my initial mx there, and saw my arm looked swollen. I had to ask if I could please put on my sleeve, and they had to clear this with Dr. S who was attending. They'e come a long way, a very good thing! I think Dr. Massey has had a very positive impact in this regard.
Chemo. hmm. I was one of those people who had chemo, but I really wonder about the benefit, if any, I got. Scans before, during, and after, etc. What I did get was tons of side effects, including blood counts that are still below normal almost 4 years later. The Oncotype was new then, and it was not even offered to me and I hadn't heard of it. I found out about it later, when I was already in chemo. I asked, and they said, well, it's too late, your already in chemo. I mean duh.
I can only say that initially, when dx'd, I wanted to be really aggressive with medical treatment. Thinking this would be certain to kill the cancer and give me the best chance of survival. Cancer is a very scary diagnosis, as you all know. Now I realize you have no guarantee that anything you do medically will kill cancer (running the numbers is good, at least you know if it's worth it!), but what you are guaranteed is that chemo and RADS will hurt your body. I think differently about treatment this far out, still being alive 4 years later. I may have taken the same path, I don't know, but it would be for different reasons other than fear of dieing.I was not really thinking about side effects. I would consider the whole picture now. ha! Too bad you don't have all this wisdom when you're initially diagnosed! (Wasn't that the worst, scariest time??) ugh.
Anyway. If the medical doctors are saying there is not really any benefit from chemo, by golly, are you lucky ladies!! Your whole body is spared!! What a blessing. Honestly. Jump up and down and shout thanks to the heavens!
If you are going on Tamoxifen, be sure to have that test to see if you are a good metabolizer of it.... Ask about that for sure.
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Pinkheart- I had Dr. D. as my primary surgeon and he and all of the surgeons and staff are VERY proactive about LE problems. I think all patients are evaluated by a LE specialist. She sees patients numerous times when they are in the hospital. I only had one lymph node taken during a locally done mastectomy and reconstruction) had been told by numerous local docs that my LE risk is very low. I was not comfortable with and did not want the special LE arm massages (just what I personally needed to keep the stress level low for myself low when it came to this prophylactic surgery on the other side). I had to specifically make it clear that "NO - I didn't want this." All of the staff is very aware - this should absolutely not be an issue for you. Sounds like you are the kind of patient they will love. If I was in your shoes I would call the Center and ask to speak to the woman who is the LE specialist -I can't remember her name. I am very sure she would be happy to talk to you. (My personal feeling is that she is totally into her job and your call would probably make her day.) That way you could discuss your concerns and there should be no surprises.
OK about the test for metabolizing tamoxifen - CYP2D6 enzyme. From what I have read - the clinical studies now show no correlation between the results of the test and survival/recurrence for women who are taking tamoxifen. This is an abstract at a meeting. I am sure there are reports in peer review journals. This is just the reference that I have on hand...
http://www.abstracts2view.com/sabcs10/view.php?nu=SABCS10L_1093
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Besa~
That's great news, thanks!
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Home sweet home. Smooth day traveling too. Post surgery reports are positive results. Finally did genetic testing and we are still waiting on those.
Smooth recovery to you Dana25 and katiejane it was a joy meeting you yesterday. You will do great tomorrow.0 -
Yay, Willy! I'm glad everything is going so well! Enjoy recovering at home.
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Ah Anita, I just wish we had more time to visit! You looded like you were doing really great!! I'm glad your trip home was a smooth one! How does it feel to be home?!!!
HUGS, Katiejane0 -
Pinkheart... starting last August, the Center now uses a tattoo on your "bad" arm, a big green tattoo that says LYMPHADEMA... so they will know which is the bad arm... and for me, I had had 2 nodes removed a few months before my surgery and had no LE, so I did meet with Jen (the LE specialist) and got massages, but was not wrapped during surgery.
About Tamoxifen and the test, my MO said the test doesn't really work, and wouldn't give it to me...
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Katiejane it feels so good to be home. I think my recovery shifted into top gear. Don't you love Dr. Massey? You will do great tomorrow. The surgical staff are like angels with no shortage of smiles or hugs. I will be thinking of you. Cyber hugs until you are up for posting from the other side.
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Willy......so nice to be home. Thinking of Dana25 and Katiejane.
Jannelle, I will not have car service. I am bummed. It is adding quite a bit to the "tab". My Dh has decided to stay right at Fairway with me. This will help a little. We will have to taxi from airport to hotel and 2 days later rent a car for 5 days until Homewood and then taxi to airport. Yuck!!!!
Hoping Harmonysun is doing well. I will be anxious to hear.
For those of you who had Dr. Massey and went to Fairway........was your post op at the center????? My pre ops are in Covington I believe.
. I sure wish my insurance covered St. Charles.0 -
Thanks Betsy, that's good to know.
Meanwhile, I'm out in my garden in 100 degree weather working without gloves on my BAD arm. AND so today my chest wall & axilla LE is the worst it's ever been.....
About tamox, my MO has published alot on this . . . but he would not give the test to me.
Can't remember what he said reason though.
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I have a very small opening on the corner of my flap, maybe where scab fell off?? Nothing draining but maybe a bit bigger than yesterday, I am putting on Bactriban and covering with dressing. I will send my dr a pic tomorrow, but do remember reading somewhere it might be better to keep it dry and exposed to air?? Any advice?
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Keep it dry... use betadine and cover with a dry pad and compress.
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Cherrie & all-
This has probably been posted before, but what exactly are the pre-ops that need to be done?
I'm trying to check things out with insurance, etc. So fun...
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Thanks Betsy , I don't have any betadine at home so shall just put clean dry pad on it till I talk to dr in the morning. Happy 4th to you!
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Hey Jen, The center sent me home with Betadine swabs, they were in the bottom of my bag. I had skin come off too and they told me to put bedadine on it and then an ABD pad then the compression bra. But, yeah take a pic and send it tomorrow.
As for the pre-op tests before you arrive was (blood tests, chest x-ray, and something else that is failing my memory at the moment). The only real tests for pre-op once you get there is a ct-scan. The other appointments are meetings with doctor, anesthesia, PT/OT etc.
Hope that helps.
Good luck KatieJane!! You will do great!!! Glad to hear Willy you are home and resting!!
Dana25 hope you are resting comfortably!!
Gentle hugs to you all :-)
Chelle0 -
KatieJane - Good luck today!
Well, the breast center navigator that leads a local support group came to my rescue yesterday. She met me at her office and changed the failing drain. YAY! It was such a relief.
Esmerelda - I am glad that you don't need chemo. It was rough - nothing I ever want to do again! Congrats, it is a good thing.
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Katiejane......thinking of you and sending good vibes your way today. XOXOXOXO
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Pinkheart- Looking at your MOs publication list - he should be on top of things. Just a FYI which you may already know about - there is an interaction between tamoxifen and grapefruit juice which theoretically would make the tamoxifen less effective - like the SSRI - tamoxifen interaction.
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I am a patient at UNC at was put in a study to see about the uptake of Tamoxifen. For a while I took 40mg. YUCK! She put me back on 20mg and at the end of everything said that is was in the middle for uptake of the drug. Who knows!
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Great. So I am an "extreme metabolizer" of Tamoxifen, which I thought was a good thing, but maybe it only means I have extreme side effects!!! ugh.
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In so many ways dealing with this is a difficult path -getting the latest and reliable medical ninformation, finding good docs has all been a struggle for me. This board, especially the women on this thread have helped me so much. I want to thank everyone here.
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Pinkheart-for clearance I needed a chest x-ray, EKG, stress echo. My surgery is in 5 weeks, but I have this done. In another week, I will do all the blood work and urine sample. When you get to NOLA your doctor will do a blood typing, CT scan, and whatever else they require. I need to have everything done by July 25, because I will be going to Lake Michigan on vacation, son's wedding, and then NOLA for surgery on Aug. 17.
Thinking of all who are just coming out.....Katiejane and Dana25. Hoping for great healing for Jannelle and Harmonysun. Has anyone heard from her?? ((((((hugs))))))
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I'm here at St.Charles today for my pre-op.work and markings with Dr.Massey.I didn't realize it was only a 17 bed hospital! Just had my pics done....not so bad.I asked for copies to be emailed to me. Went to the New Orleans school of Cooking downtown yesterday for the gumbo, jambalaya and pecan praline class...highly recommend it! You get a history of the area and food and of course, get to eat!
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Hope everyone is doing well!!
Just had my right drain pulled:-) Still have my left, but hoping to lose it within the next week.
I believe I was told we should wear this girdle for another week after the last hip drain comes out. I was talking to a friend and she asked why & I didn't have an answer. Why are we supposed to keep wearing the girdle if all the drains are gone?
It's just so hot here that I can't really do much. Looking forward to being drain free and girdle free :-)
Hugs to all you wonderful ladies and thank you all again for all your support, advice and wisdom!!!
Chelle0 -
When the drain is pulled there's a small space where the drain used to be. Without a drain in place, there's potential for that to fill up with fluid. Compression helps it seal it up faster, and also gives your body time to start dealing with extra fluid on its own.
That's my non-medical understanding of it, anyway.
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Thank you Jeskachi!! That makes sense unfortunately, as I was hoping I was wrong and we didn't have to wear it for another week. One time I actually wanted to be wrong...lol Oh well, I've come this far.
Thanks again!!
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Betsy: Have you been to New Orleans before? I will be having the stacked DIEP flap. Nervouse about lengthy surgery. I had an expander in after my masectomy last summer, but it failed. I have zero interest in implants. I took the summer off fom having any surgery....figured I would wait until its cooler, plus I wanted a normal summer!
Taderbug=Teresa0 -
Teresa, do you want me to add your date and stuff to the list above? I can do that if you give me the specs. Welcome!
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