NOLA in September?
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Ref, I have not had my DIEP surgery yet but after my mastectomy I had a drain tube for 3 weeks, it got clogged and they removed it, kept having to aspirate and put another tube back in. The reason I am telling you all of this is that my surgeon finally wrapped me up really tight in an ace bandage to help stop the swelling. If you need temporary compression until you get something else from NOLA an Ace bandage may be a fairly inexpensive fix for you.
Good luck. I dread having drain tubes again. I, too, was juicy and thought I would never get those dang things out. I have to warn you also that the place where my tube was for so long is still a sore spot. I have a hard time sleeping on that side and that was nearly a year ago.
Best of luck and please keep us posted!
Susan
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Susan - Good idea! I will definitely try the Ace bandage. I am hoping all this extra compression will do the trick and I can avoid the aspirations. I'll report back when I get further word from Celeste.
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Hi Friends, Sorry for not posting much lately. I am in my hometown of Buffalo, NY with one of my dearest longtime friends. Tomorrow she has her first chemo treatment for a very rare cancer. Surgery has already removed all the cancer from her body (if we speak it, it is true), so this is really just the "insurance plan". She is scared, and my heart aches for her. I will take her for her first treatment at Roswell in the morning. Even though it is not breast cancer, I know y'all won't mind me posting here and asking for prayers for her - for strength, for serenity, and for a long and healthy life. And maybe a little one for me, too, while you're at it, for some wisdom to help her through her journey. Thank you all . . .
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Interesting discussion about rib resection. This has always been confusing to me because the word makes it sound like they're putting the rib back together after taking some out. I never understood that! Until now!
Amy - Prayers for you and your friend have just been sent upward and outward from MN. You are a wonderful friend.
Spring - I asked one of the docs if it was better not to be too active - if it would help reduce the fluid output (I think it was Trehan, when he discharged me once). He said that the fluid was going to be there regardless and that activity just got it out quicker.
ref - another thing you can do is put more of those bandage pads inside the dom. They told me to do that in an area where I was retaining fluid, and it helped a lot.
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Amy - prayers for your friend. She is so lucky to have you there for her.
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Minn, interesting, maybe the "don't move a lot and you will have less fluid" is an old wives tale then! Thanks for sharing that.
Ref, yes, I think if you squeaze the crap out of yourself for as long as you can stand it you will see a difference!!
Amy, prayers for you and for your friend. What kind of cancer does she have? You are a wonderful person to just BE there for her during her first chemo. That one really un-nerved me, I wondered if I would just explode from all the toxins. ugh. Sending love too. Kathryn is right, she is lucky to have you there !
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Thank you denouement. LOL I just posted about bilateral prophylatic mass, seconds before I read this!. I am considering NOLA too. I am going to check out my surgeons recommended PS (just to be polite) but In my mind I am going to NOLA. I am having it done within the next 6 months.
What was your experience following the surgery? How many times did you have to go to NOLA for it? Who took care of you after your return home ? Like dont you have to measure drainage or something? Does your PCP do that? Or your GYN?
I have so many questions! Please feel free to tell me any and everything you feel comfortable telling. I am sooo excited about this and want to know thge ends and outs of it
In Kindness,
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Amy. Sending prayers for you and your dear friend.
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I was also told that moving more (not overdoing it mind you, but moving a decent amount every day) right after the surgery was a good thing to help get the fluid out and into the drains - I can't remember if it was Dr. D or Dr. T who told me (damn pain killer head fog!) but Laura definitely reiterated that when I was there for my post op. I didn't have hip flaps but it seemed to work well with DIEP as all my drains came out except one after a week and for that last one it was just one more week after that--no seromas!
I posted the pic by clicking on the "insert/edit image" icon above - the one that looks like a little tree with a white box around it. Then you need to paste in the exact separate URL for the image (not just the link to the page with the image on it) - so if you see an image you want to post you would need to click on it (if possible) so that it is the only thing showing on the web page. There is no option to upload images that are from your computer, you would need to upload photos to a site like flickr or imgur and then link to them here--hope this helps...I'm a geek so let me know if you run into any issue :-)
Amy - best wishes to your friend, sending good thoughts that way - it's so great that you were able to be there with her!
Lisa645 - welcome! would be happy to talk to you about PBM any time...as I was told be several people, NOLA is the "gold standard" in analogous tissue reconstruction. I'm sure there are many docs out there that do a great job but I wanted to go to the best, ya know?
I'm pm you with my info and we can chat sometime!0 -
Amy... my prayers to your friend...
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Oh.. and my PCP said he would take care of my drains.
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Lisa - my husband helped me with my drains..after getting home I could strip them and measure myself. He actually pulled them when they were ready. Not hard to do but kinda gross. After all I went through I really didn't want any other doctors touching me and Dr. D showed my husband how to cut the stitches and gave him everything he needed.
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Well, it seems that Dr. Sullivan wants the drain out. We agreed that I would take it out Sunday - I'm hoping that the drainage will decrease over the next couple of days. Then I'm taking all of your advice and doing as much compression as possible. Spring - I asked for a smaller garment, which Celeste is going to send along with more ABD pads (Minn - Celeste said exactly what you said to do - put extra ABD pads on the drain site). Hopefully this will resolve easily!
Lisa - managing the drains is doable. As dsnydawn says, we were shown how to strip the drain, measure output and pull the drain when ready. And I agree that I don't want any other doctors involved if i can avoid it.
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Lisa, Nola rocks! Don't be dissuaded by locals and well meaning family and friends who just don't know. My husband and local docs were totally greaked out when I told them I was going to NOLA for my MX and recon. They all make me go to a local doctor at Duke who ocassionally did DIEP. He told me I didn't have enough for even 2 A cups!!! And, I would need MX, stay flat, get rads, flat, wait 6 months, flat, and then he could give me two A-cups. Needless to say I went to NOLA and have 2 C cups! I need to have stacked, but instead of looking hacked up, my body looks better. So that's my story! NOLA will still follow you when you go home, they order tests if you need them locally, and fly you back on their dime if there are complications that they need to deal with. they are most excellent at dealing with things from a distance....
Drains, though they seem scary, are no big deal. My DH took mine out the first time, and I took my own out after that. It does not hurt. they just slide out FEELS SO GOOD to be done with them!
Ref, wow, squeeze away girl!!! compress compress compress, let's hope there are are no seroma's in your future!!!
Thinking of you Betsy, as you get ready to go!! You're up next!! Soon, you will be on the other side...
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Betsy-Your post op is the same day as my pre op. I think that I'll be at the center all morning and probably early afternoon. I hope that we bump into each other then!
Amy-Prayers for your dear friend and for you. You'll know just the things to say to help her get through this difficult time.
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Oh right... July 28.. I think my appt is 3pm on that day.
Today I spoke with Ashley about all the pre-op stuff... looks like a full day affair. She told me they will be feeding me lunch.
I have been on the stage II w/lymph node involvement thread and I am now all worried that I should be haing radiation (at least to my nodes) based on a new study, even though all my docs (prior to the study) said I didn't need them with a MX... I think there are some things I'd rather not know... Once we make a decision and time has passed, like the window of opportunity, I don't really want to hear that perhaps I should have done something that would have improved my odds.
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Betsy, I have to tell you, again, I am in the same boat with you. I actually had two nodes that were fully involved and two nodes with micromets. The radiologist, oncologist and general surgeon all agreed that I didn't need radiation. In addition, my tumor was 4.2 cm. It is so strange to me because I have read so many women's stories here with fewer nodes and smaller tumors who went through radiation, yet all of my doctors were in agreement that I didn't need it. Like you, I hope I don't constantly second guess the decision.
It's your last weekend before surgery! Hooray!
Susan
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Yes Susan... It is terrible to second guess... but for sure I will be calling my MO Monday to ask him about this... I suppose it isn't really too late to have rads after surgery and healing, especially just to the nodes, better late than never??? But I want to hear my MO say (after the study) that he still feels the same about radiation and MX.
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Ah, the old rads conundrum. I did not want it when my onc initially recommended it (and expressed myself accordingly!) but I still went to the RO to understand how the decision would be made. I had 1.5cm mucinous and 1.2cm IDC and DCIS that was closest to the clean, but close, margins. And one node positive. Since I'd had my MX by that point and all those other factors put me in a gray margin, she started looking at the really small stuff, like were there any cancer cells in the tail (or whatever it's called) of the node. If she was going to do radiation, it was going to be to the chest wall and not the armpit area. She gave me to clear, that rads would not benefit me, so I ran with it! I guess I don't have it in me to research that all myself, with statistics and studies. I had a lot of confidence in her by her bedside manner and how she walked me through the whole process of deciding rads or no rads. My onc ramped up my chemo from her initial recommendation anyway. So I feel like I'm hitting it hard as it is! No way I could feel ok second guessing. That's how I got to NOLA. Everything else felt wrong. Pursue what you must to have no regrets!
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Not to complain but my stage 2 has been a total drag. I'm hoping that the outcome is worth the difficulties. Today, two days after my previous (and 2nd) aspiration I went back because I am very swollen. New radiologist (3rd on in a week and a half) - bigger needle. Starting to feel like I could do it myself. Anyway, they only got 30cc from the hematoma - I guess the rest hasn't all liquified yet. Good news is it's brown and not red (old blood, not new.) He said expect swelling for 1-3 months. But he did suggest a heating pad might speed things up. I can only hope. I guess no skimpy clothes for me this summer. Also, some sort of infection near where the drain site was. Celeste and Laura think it's ingrown hairs that got infected. Back on antibiotics (again! 3rd time in 3 months!)
Lisa - don't let this deter you. The doctors and staff are excellent and no matter what you can have problems. The up side is they don't abandon you - I email and call and they are very quick to respond. I even went into the bathroom of my hairdresser, took a picture of the rash/lumps by my drain site, immediately sent it to them and they called back within 3 minutes to discuss it with me. Love all of them!
This will all resolve itself, right?
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Kathryn-I hope that heat liquifies the hematoma so that you can get it sucked out once and for all. I'm sorry that your post op course has been filled with seromas and infections. I'm sure that when the swelling subsides (and it has to!) you'll see that it was all worthwhile. I hope that you have some fun this weekend.
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Oh Kathryn , YUK
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Kathryn! Hang in there!!! I also would think that warmth would help the hematoma - it helps increase circulation to the area, so would bring nutrients via the circulatory system and then will also take away waste via the same system. What did Celeste say regarding the use of heat?
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Paula... I have been stewing all morning and lost sleep last night thinking about this... My docs gave the same feeling... that the rads AND a MX were not necessary, and I asked numerous times if I had the MX I was not opening myself up to REGIONAL recurrance w/o rads and was told no... that was the chemos job... and had 2 extra doses... and so I went with that and decided on BMX at NOLA even though it was bit more aggressive than rads... my new concern is the new study that says even with MX, if you have 1-3 nodes, you will benefit from rads. So as I am just days before my NOLA BMX, I am worrying about things that may be out of my hands at this point... I made the best decision for me at the time based on the those studies... I guess that in a month, a year, a decade there could be a new study... things are always changing and I can't look back and second guess, but it does make me worry and wonder.
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Kathryn, yuk. This will soon be behind you, and it will be worth it, but I know it is a misery now! Hang in there.
Betsy, I had a large tumor (~ 4-6 cm if you believe CT vs. MRI) and zero node involvement. And my ONC and the RO BOTH isnsited I needed rads to my chest, armpit and clavacle! I often wonder if that was overkill, but they both felt this was the best for me. I will tell you, rads is not without it's permanent implications to your recon. That side is firmer and a bit smaller, no matter what Dr. D has done. However, back a bit when I really hurt the rhomboid muscle in my back and had a brief period of being sure I had bone mets, I remember thinking that I did everything I could do, even the excessive rads... So I don't know. I go back and forth myself as to whether it was a good thing or not, and if I would do it the same way agian. Good luck... ugh. If you are having rads, the NOLA docs will "overstuff" you on that side in hopes that any shrinkage will be accounted for. So it would help to know ahead of time. !!!
Hi Nordy!!!!
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Well.. IF I had rads, if would probably only be the nodal area I would think... certainly not the breast itself with no breast tissue left ... I will call RO amd MO on Monday and see if I can get them before I fly off... Even after the study they may feel no rads is necessry... I had a .38mm cancer in node... so super small.
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Thanks everyone. It is so nice to sign on and see all of the support from people who really understand!
Nordy - I love what you said about the nutrients gravitating to the hematoma! I have not heard back from Celeste or Laura on this because the aspiration was after NOLA closed. I was tempted to call the doctor on call but felt that because it wasn't an emergency I wouldn't bother him. The internet seems to think it's a good idea too as long as there is no new bleeding and all of the aspirations show very brown old blood
Betsy, I'm so sorry this new study brings up new concerns for you but there are always going to be new studies and alternative opinions. I saw this when I struggled with infertility and even with BC. Each doctor has their own unique perspective and philosophy that they are comfortable with. That's why you need to find doctors you trust. For every doctor that says no RADs I am certain you can find another that would say RADs. None of them are psychic so they can't tell you 100% what the outcome will be but they are doing their absolute best to protect you and do what they feel is necessary to prevent a reoccurance. Hang in there!
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Kathryn, it does sound like a drag! I'm guessing a hematoma is not a common occurrence? I guess I forgot why you have a hematoma vs a seroma. I still get fluid swelling in my belly. I don't know if it's simply still healing, from chemo or from activity, but it seems different every day! I too get the days where I wonder if it's all worth it. Then I remember what a game changer stupid cancer is. I sometimes dread the thought of another surgery (stage 2) but then I can hardly wait to get everything 'cleaned up' so I can get on with a new normal. I've had an infected ingrown before and warm compress was essential. Be gentle with yourself! Even though you want your body to heal faster.
My PT gave me my first exercise to work on strengthening my abdominal muscles. It took her about 10 minutes to get me to understand it and do it right! And it's so simple (lay on back, raise one knee so thigh is perpendicular to body). My abdominal area is simply numb from DIEP and my brain is just not understanding it all. I would have never guessed any of that is going on and I was flabbergasted when I kept not being able to do the exercise correctly. I'd use my thigh too much, glute too much, arch my back, bunch up my upper abdominal and more. I've got plenty of fitness experience and I feel almost ashamed that I have to go back to the very basics. My PT reassures me that going back to the very basics and working on my core is only way to build up my strength so I'm better than ever. So I get to take my own advice and be gentle with myself!
Betsy, I've had to back away from reading so much about BC. It's so easy to make myself crazy from it. And now is the time when I'm supposed to be reducing stress so I can heal! I think there can be a fine line between worry and instinct and I have to go back to the Serenity Prayer often to clear my mind. I can only hope that there WILL be new info down the line. Info that I don't have now that will benefit future generations. Even if it is info that could possibly better benefit me now. You know, when I went to see my RO, I was thinking my armpit would be radiated because I have no breast tissue left, but she would have done the chest wall only and not done the armpit. I don't really understand, but at this point I don't need (or want!) to understand. I'm just leaving rads in my dust!
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cider - hematoma is old blood (this was from all of the blood loss I had during surgery then the transfusion.) I am guessing they are similar in that they swell and need to be aspirated. Today is the first day it's causing me pain. I had seromas from my hip flap but they never hurt. I also had mixed feelings about stage 2, but it is liberating to have it behind me (even with complications.) I had 3 surgeries in 5 months and I don't even want to have a mole removed these days! By the time you are actually having it I bet you'll be ready and excited.
2tzus - thanks for the input on the heating pad. It really feels wonderful when it's on! I have been compressing 24 hours/day (outside of my shower) and it actually feels better that way. I do worry that I'm leaving for NY on Monday and the heat is going to be unbearable there. Also, no swimming for at least another 2 weeks. My kids are so bummed. This summer is a bit of a wash. Oh well, better to be healthy
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Thank you everyone for the NOLA advice. I feel better about going.
You ALL are so inspirational. many cyber hugs and sending cyber strength as well!!!!
xxlisa
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