Any October 2011 Surgeries out there want to wait together?
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AJ - Today I met with the PS (with DH there too) and found out that because of my breast skin involvement (postive on skin punch biopsy), he doesn't know how much skin the BS will leave. He hopes to fill each TE with about 200cc at BMX, saying it may be in the A-cup range (uh-oh, like pre-teen AAA?) and then continue fills starting 10-14 days post-op and then weekly until rads (6 weeks between BMX & rads) for a total of 500-600cc. Does that sound like a B-cup with allowance for shrinkage during rads? Does it sound like a lot of filling in a short time that will be very uncomfortable?
I had my first Herceptin-only infusion today. Seemed like a breeze compared to pre-meds + chemo. The only side effect I noticed (besides fatigue that hasn't gone away) is that my vision went blurry a few hours later and is still not right. I had that while on Taxol + H, but maybe it was the fault of Herceptin all along.
Rk85 - You crack me up!
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I can't figure out if/when I'm supposed to have an echocardiogram before surgery. I thought my Onc said I was supposed to, but in trying to find out the date, the scheduler told me no, that my Onc says not until after surgery. Well, the only echo I have had, ordered by my Onc, was 5 months ago, before chemo. So I don't know if my heart is fine after all that chemo and now 13 weeks of Herceptin. I'd think it would be good to know before BMX! I wonder if I should check further with my BS or PS, or if I'm just being paranoid. I've thought I might be short of breath a couple of times the past week, but it doesn't last, so maybe it's just more fatigue, not heart problem. A few palpitations, but I get that with hypothyroidism sometimes.
Have you all had MUGA scan or echo before surgery, especially if you've had chemo + Herceptin?
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Good Evening Ladies~
Hope you're all doing well tonight. While our situations are all so crazy scary, it feels so good to share a laugh with those who TRULY understand the daily fears that BC (or the immediate threat thereof) keeps on sharing with us.
Diana ~ How did your last chemo go today? I totally understand worrying about your PET scan next week. When I had my first cancer scare back in 2002 (melanoma) , I was terrified to discover what might be found with extensive testing after my lymph node biopsy.
Ann~ Looking forward to your update. Hope that your PS appt went A-OK!
Maria~ Haha! Love your humor. My PS totally laughed at my husband's generous offer to donate his belly fat in order to re-create my "girls." Ummm... NO, his belly fat is full of stuff that I'd never consider putting in my body. My boobs would then be stuffed full of "Cheez-Its" LOL! YUCK!
rk85~ Does the grafting procedure delay the healing process? I know of only one woman (personally) who has chosen this route so I don't have much experience with recovery time. While I know that this woman has had a couple of false alarms re: her transferred tissue, she is okay but underwent lots of testing. I know that every surgical option has its own set of risks and there is really no "best" option.
So... I'm home tonight with my hubby and 11 year old son who BOTH have confirmed dx's of pneumonia
It will be a miracle if I can manage to stay healthy while taking care of them. I see lots of Vit. C in my near future! Good Night Everyone~
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Ann~ I think we were posting at the same time! I vaguely remember my PS saying that he would attempt to initially fill my TEs with 200cc too. I'll ask again, but I'm thinking that's probably the equivalent of an AA cup? I'll let you know what I find out.
Glad you didn't have extreme difficulty with Herceptin today but I hope that your vision is fully restored soon! Re: the ECG---- I had my last one done at my PCP's office. I can understand wanting another for peace of mind
Try to sleep well~
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AnnAlive -- I had my first Herceptin only yesterday too and I agree it was so much easier then TCH. It took 5 hours less which was great. I had my pre-op appointment after my herceptin. UGH it brought home the fact that in 2 weeks I am having surgery.
Have a good day ladies...
Margie
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I had an Echo before the start and after finishing chemo, just to check and make sure chemo didn't do any damage. They probably don't anticpate anything and just following protocol, that's why they aren't doing it before your BMX.
Drains, the number depends alot on your docters preference. Like everyone else they get in a routine about how many they put in, ask your PS. Of course it also depends on how much you bleed and produce fluid during the surgery. I'm a fluid producer (lucky me) so I had 6 drains in. Actually it really wasn't bad for me, everything is so numb there wasn't much discomfort, they were just a pain in the ass to have around. Couldn't stand the string thing around my neck for I got the cami's with pockets or even wore a fanny pack around with them for awhile.
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Gamergirl - Can you add me to the list? BMX with TE's on 10/7.
I'm glad I found this board.
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Got cha down, Sherylh72. I'm glad you found us!
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I guess tentatively you can put me down for Oct. 26. Wish it was sooner, but I'll take it! BMX, probably w/ DIEP or lat flaps.
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Thanks for keeping up with surgeries and doing all the work to keep our Oct list updated Gamergirl. Love your idea about writing "goodbye cruel world" on the girls before surgery! But I understand nurse Ratchet shot that down. You'd think they could throw us a bone once in a while.
I did have an awesome nurse for my lumpectomy who came to my rescue after I flashed my rear end to the whole pre-op dept. I was already in happy land and just having a grand old time, yuking it up and generally making an ass (no pun intended) of myself in front of the residents, doctors etc. She just got me back in bed, put on my (surgical) party hat and sent me off to the (OR) party. The cruelest part of it is that I had enough drugs to do these stupid things but not enough to erase the memory.
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Got your date in Rachel. I hear ya, they schedule these so far out sometimes it drives us nuts! I can't believe mine is 2 weeks from today. It actually made me sort of sad. Only 2 weeks left to enjoy what I was AMPLY gifted with. Ugh.
RK that is hilarious! I am sure they see about everything, but I still have a feeling they laugh about it.
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Hope y'all don't mind adding one more to the list . . . . I'm slated for 10/10 . . . . find in my way in this new world . . . trying to figure out Uni or Bilateral . . . . Open to any wisdom from you who have been here longer!
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Hey Kelley I'll get you added.
That's a tough decision, uni or bi. For me it was much easier, because I have the bad brca2 gene. They both had to come off. Plus they suspect that I have it in both, but I just didn't want to mess with a second biopsy.
My only thing would be... you can always take the other one of later, but you can never get it back. I am dreading the loss of normal feeling. Of course, if you get it all done at once, then maybe it's easier to match for reconstruction.... so basically, I'm no help at all. I don't envy the choice you have to make. Are you going to have a reconstruction?
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Thanks so much for the reply! I am awaiting testing results on BRCA . . . and if that is positive, I am with ya, sister! Then the "twins" have got to go. . .
I am definitely planning on reconstruction . . .probably going about it "the long way" with my uncertainty about radiation post surgery. Planning on TEs (Tissue Expanders? Did I get the Acronym right?
) immediately but wanting to get TRAM Flap done once I know what I have to face post surgery . . .and face it (which may mean a delay I realize). That is another big dilemma I face ----- wait entirely to do anything or go with TEs and hopefully save skin then move into a TRAM flap? Ugh - seems like a lot of surgery. . . . thoughts? I have a PS (plastic surgeon? I'm trying to keep up with the class....) who says Tram immediately . . .but not wanting to "waste" that work if radiation is in my future. . . . make sense? I obviously need to connect with y'all . . . open to any feedback! thanks. . . .
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I am having a bilateral mastectomy with reconstruction and hysterectomy (yes all at the same time) on Oct 4th. This is my second diagnosis I was first diagnosed in Feb of 2008 did lumpectomy, chemo, and rads and now here I am again. Best of luck to everyone this month!
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Hi all,
Hoping you can add me to the list too. I'm scheduled for a uni on Oct. 4th unless my BRCA comes back positive then I'm in for the bmx. Got my dx 2 weeks ago and was all set for a lumpectomy than went to BS today and she told me they found more nodes in the MRI. I've been a total mess all day. I thought I was prepared for the uni as plan b, but guess not!
I feel totally overwhelmed thinking about the reconstruction options. Thinking of going with implants.but since they can't save my nipple I'm even more confused.
Sorry, I'm just such a puddle. Thanks for adding me to the list...although I would rather be just about anywhere else
Dana
Maria and rk85 -- thanks for the laughs. Actually just realized I'm finally getting a tattoo. My DH has a few and I've always hated them. How ironic...I'm getting a tattoo and its a nipple! But on a serious note, is it going to look awful?0 -
I thought I had my plan in place for bi-lat with immediate recon with TE and implants later until I saw PS today......he recommends DIEP for me since I will need rads. I don't think I want DIEP since I ruled out previously mainly for recovery time. Any input or suggestions? He said rads really increases infection rate and damages skin....btw, he doesn't do DIEP, nor does anyone close to me so checking this out this late in the game is going to take some effort...ugh!
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One of my chemo group friends suggested this thread... so glad to have found you all and I hope it's OK to wait with you. I'm scheduled for a lumpectomy with SNB on 10/19. I've been keeping focused on getting through chemo and now that it's done (last day was 9/15), I'm kind of like... wow... I haven't given surgery much thought since the spring. Time to get educated! 0
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Hi everyone,
I was diagnosed Sept. 1. I just found out my surgery is scheduled for Oct. 11. So, could I be added to the list, too? I've been reading posts in the forums for a while and was a little shy about joining in. I think I've been in shock for the last two weeks. I'm having a BMX, but I'm not having reconstruction. They're also going to put in a port-a-cath during the surgery and I think that's the part that scares me the most. I was hoping my surgery would be sooner. This waiting is driving me insane. Every little pain or cough and I think, is this cancer spreading?
It helps to see that I'm not alone in this.
Thanks
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Danadane,
I completely relate to your indecision about everything. That state of tension and turmoil just does not seem to go away! Every time I think I have made a final decision about anything I find myself questioning it: do I really want a mastectomy, why not do the lumpectomy + rads + tamoxifen; do I want a unilateral or bilateral; do I want to do the sentinel node or not; then onto the same waffling with the reconstuction options. I am scheduled for the mastecomy and fat grafting with Dr. Khouri in Miami and within the span of 24 hours I go from being absolutely sure I'm doing the right thing to thinking maybe I should do a diep here at home.
Its maddening!
Dr. Khouri's office if you are reading this, just kidding, ha-ha. I will be there bright and early as planned for the surgery in Oct!
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Kat and Grandma - welcome aboard!
Wow. I'm amazed at how quickly everyone else seems to be moving. I found my lump in July and I'm slated for Oct. 26! It's interesting that the DIEP is now being encouraged so much. I'm in the middle of some type of issue between the BS at the hospital and the new rising star PS who was hired to do DIEPs - I'd be the first that the BS would have to oversee, and he is not happy. But he referred me to the PS practice (to the senior member of it, though, who talked with me and then introduced me to the young guy saying I was a great candidate). So.... do I become a guinea pig? Yet I'll be hitting three months soon and I want this thing gone.
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Rachel,
Just to add to your choices (but hopefully not pull you down into my pit of waffling indecision), have you considered the total fat grafting reconstruction? It sounds like you are not thrilled by the flap procedures, and although the Diep is the most advanced flap and supposed to do the least damage, I think this would depend on the skill of the surgeon. And rising star or not, I would rather go with someone experienced. I don't know how a surgeon is supposed to get experienced though if everyone wants an already-experienced surgeon.
Anyway, PM me if you want more details on the fat grafting.
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Hi ladies,
I had BMX in August but I'm scheduled for ooph/hyst Oct 26, can I play here? I hope I'm going to have some sort of implant revision before then, because my implants are living in my armpits, and I'm not too happy about it! Oh, I have a history of melanoma when I was 17 and I'll have more moles surgically removed in October, too. What a fun month!
Hope the rest of you are hanging in there!0 -
I'm swimming with you in this pit of indecision.
I so relate to changing your mind. . . .One moment I think take one now. . . .take one later . . . . the next moment I'm chanting, "Go Bilateral or Go home!" My "newbie" question to you seasoned survivors is: what is the smartest route of reconstruction if you do face radiation? (of course totally understanding risks are associated with them all. . .) Thanks much. . . .big day at "The Cancer Center" to learn more and hopefully find some clarity! 0 -
Hello everyone and welcome (welcome, do I really mean this???) to the new women on this thread...I'm sorry to see you here, and amazed that the list is growing so fast. Haven't written in some time, but I'm a lurker and a voyeur here and on the TN threads, and mostly play silly games which I find very entertaining in a mindless sort of way... Yes, GrandmaV, the waiting is the worst thing, and time seems to be passing so slowly..I just want to get on with my life, but I suppose I should be grateful that the chemo appears to have done its job, although I'll know more next week.
Kelleyod and rh85, floundering in pits of muddy indecision,
I can't help at all when it comes to reconstruction, as I'm not planning to have it, but whether bilateral or not is a big decision. I think if you are BRCA positive then having both breasts removed is fairly standard as the chance of a new primary is statistically so much greater. Otherwise, I can only tell you why I decided to go for a bilateral. The fact that I'm 56 has quite a lot to do with it, I think.which also influenced my decision not to have reconstruction.. 1.I wanted to feel I'm doing everything possible not to have to go through this again (no guarantee I know, but I feel this very strongly). 2. Since I'm not planning to have reconstruction (although I might change my mind in the future..can't rule that one out!) I'd rather be symmetrical..just don't fancy being lop-sided. 3. My surgeon suggested I do just one and then I could decide later about the left, but I feel I wouldn't be able to face gioing back in for another op in a few weeks/months time. On Monday I'm having an ultra-sound to see how far the tumour has shrunk since mid-way through chemo... with Triple Negative they mostly make us have neo-adjuvant chemo, followed by surgery.. I'll also be having about a month of radiotherapy afterwards, but I'm jumping the gun and we can discuss all these exciting
events at a later date, when we're all through surgery!!Bye for now to all, so glad we can share our experiences...
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For someone with low grade DCIS, there is a low risk of needing radiation because DCIS by definition is only in the ducts and cannot travel and metastacize even if released. The problem is with high grade DCIS with comedo necrosis, and larger areas of it, because in those cases there is a chance some has turned invasive but that is unknown to the doctor and patient. This is why if you are in the high grade DCIS category and choose mastectomy, they recommend a SNB, looking for invasive cancer that slipped detection. If your SNB comes back positive, there are some studies on the node dissection thread that say for early stage BC, taking out all the nodes does not add anything to survival odds.
At that point, radiation of nodes may become a good option. From what I have read and heard from my PS, radiation and implants do not mix well. Also, she will not do a DIEP if radiation is possible because some studies suggesting women who have had DIEP have a higher rate of recurrence of BC after radiation (maybe because the flap interferes with the radiation reaching the nodes properly?). So once again I go back to Dr. K's fat grafting procedure, because although it works betters without the radiation, it seems to be the best choice. The stem cells in the fat may also help to repair some of the damage caused by the radiation.
Hope this helps, and I'm off for my daily swim/wallow in the POWI (pit of waffling indecision).
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Maria_Malta, thank you for welcoming me. I can relate to your decision for BMX without reconstruction. I'm 57 so we're about the same age. The 3 reasons you gave are exactly how I feel. I've been getting all kinds of well meaning advice from family and friends, but they just can't know what it's like to face this kind of decision. Just when I'm sure it's what I want, someone will try to talk me out of it. So glad to know someone else who's going through this, feels as I do.
I hope all goes well with your ultra-sound Monday, so you can move on to your next step.
Thank you so much for your post.
GrandmaV
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Hello ladies. If yall don't mind, I'm gonna sign onto this thread for my wife. She's having a prophylactic BMX w/ free flap abdominal reconstruction next week (Sept 28). She's doing it due to her high risk from having been treated with radiation for Hodgkins disease when she was 19 (she's 43 now),which no doubt contributed to her having recently been diagnosed with LCIS, and to avoid the semi-annual torture of MRI's, mammograms, needle biopsies, etc. She's obviously not too happy about any of this and the message board is a bit too intense for her right now, so I've been posting some questions and doing some reading here for her.She's having the surgery at HUP in Philadelphia with Drs. Tchou and Wu, the rhyming docs. The last couple of weeks have been really hard - doctor appts, choosing a PS, anxiety, work stress, home stress, etc. At this point she just wants to get it over with, and I'd give anything if we could all just fast forward to November! We've made arrangements with her mother and our friends to care for the kids (they're 10 and 11) and dog while we're going to be in the hospital, and we're just trying to tie up the loose ends. Wish us luck!PS - hopefully it's OK to join the Oct thread, I thought it would be easier than jumping into the end of the Sept one.0
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Hello My Friends!
Sending a a special welcome to those who have just recently joined us: Clams, Grandma V, Kelleyod, Eema, kks_rd, Danadane, Stephanie33, sherylh72 (and I sure as heck hope I didn't miss anyone. My head is a MESS today.)
Grandma V~ I totally understand your anxiety re: the "wait." I would have to agree that this is most definitely the worst part of this whole "process."
Clams~ Please let your wife know that she is in our thoughts. When she feels ready, we'd love to interact with her personally
Kudos to you for being such a supportive husband ahtobethin~ I wish I had more input to share re: DIEP
I'm sure someone will come along soon with info for you!rk85~ Sorry Girl, but I just had to laugh at "POWI"! That is priceless.. and I know I've been there more times than I'd like to admit!
Maria_Malta~ I'll be sending shrinking thoughts for your US on Monday!
Kelleyod~ How did it go today at the center?
Eema~ I'm so sorry you've had trouble with your TEs
I have a history of melanoma too. There isn't a day that I don't think about having a recurrence. I am now a Skin Checking Warrior What was your stage at time of diagnosis? Thankfully mine was very early and my lymph node biopsy came back clear. kks_rd~ Congrats on finishing chemo
Your surgery is scheduled about a week before mine. Love that we have so much support here. I'm not sure that I've had a day as stressful as this in a LONG while. I received notice from my insurance company (CIGNA) that while my BMX has been approved, my reconstruction was DENIED. I am so confused as I was previously told that recon would be covered. I called my PS office and was assured that she would be all over this. Something is just not right here....
My boy is still down with a case of pneumonia so I'm signing off for now. Hope everyone is doing as well as possible. More tomorrow.
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Yikes, step away from the computer for a day and all these new gals arrive at the party! I will get everyone in the list tonight. I had a pre-op today, as well as an appt with the PS, so I've been out for what seems like hours.
Welcome aboard all!
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