NOLA in September?
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Lisa- I sincerely agree. Coming on here is like a sedative. Calms me, let's me know I will be ok.
Dana- why did they take nodes if you were prophylactic?
Vets out there- what happens if you lose weight after flap surgery? Will things get saggy and out of shape? I really really wanted to lose weight before this surgery and have failed. Miserably. I don't know why it isn't working this time as I lost weight before after pregnancies and was successful. But I leave in 11 days so that is that. I am still hoping to get it off, but it won't be before surgery. Will I ruin everything if I ever get successful with it?0 -
I did NOT have an SNB but it was explained to me that lymph nodes can potentially be removed just because they can reside in the breast tissue that is being removed. That is why there is a small chance from lymphedema with mastectomy alone, more so if it's bilateral. But it was like 3-4 in 100, so still pretty slim.
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My DOM was just too tall... If I had snapped and zippered it all the way up it would be at my breasts, so I asked Dr D if I could cut it since I wasn't zippering it up all the way anyway... He did not have a problem with that... so all of mine are cut... And Amy, I wore mine for 8+ weeks in the summer in NOLA... you can do it!! Now for Stage II, I understand it may NEED to come all the way up to your breasts if you had lipo up that far... I found it hard to breath sometimes when I was swollen, it was zippered and I had just eaten... so I think its ok to unhook a snap now and again... breathing is important...And remember, your swelling will subside, so save the DOM for later. I came home with 3 DOMs. all the same size and they are so big now I can't get compressed, which I think led to some of my fluid output issues and drains... I am wearing flexees now, with some pads compressing my butt incision to avoid a seroma.
I also felt nauseous from the pain meds and was much better once I was off.
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Betsy, Thank you for your encouragment . . . I know, I keep telling myself you were in yours forever, and in that heat!!! I am so glad it has cooled down quite a bit here in NC. I just need to keep on keeping on . . .
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Floaty thing, Kaitsmom? Oh yeah, that was my apparition cloak. ( Apparate: a magical method of transportation; the magical act of traveling by. The user focuses on a desired location, disappears from their current location and instantly reappears at the desired location). Ha ha. OF COURSE you can't remember anything about our visit!
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bdavis - I did my oophorectomy a month before stage 2, in LA, and if it hadn't been an emergency oophorectomy I think doing it in conjuntion with Stage 2 is a great idea. Why have more surgeries and recuperations than you have to. I didn't find mine bad at all. I had surgery on Tuesday and was out working in the garden on Saturday. Of course if you do Stage 2 with it it may take you a little more time.
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Adey and Brenda, I'm going to try to contact CandDsmom and hope that we can all meet up in Chicago. I'll PM you with details of my trip so we can make it happen!
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Kathryn... Thanks for the input... Part of me isn't sure I need the oofrectomy... If I was totally sold on the idea I would schedule it today for my stage II visit. The ONLY reason I am considering it is due to a CA-125 test, which is very unreliable. Why did you have yours? Oh and my cancer was 98% ER+
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Interesting conversation. An ooph is in the back of my mind too.
Sandy- I'm in!
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Adey, I'm curious about your name! My daughter's name is Adrienne and she has always been called Addie.
Healing thoughts to all those post op, calming thoughts to all those coming up.
I am probably going to schedule a stage 2 B pretty soon. I had stage 2 last december and really want smaller breasts!
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Amy... what size did they make you the first go around?
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Yup! My name is Adriene. Pleased to meet you. (c:
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Betsy, I had an ooph right after I finished my chemo. I had already had a bilateral MX. My cancer was weakly ER+. But in my case, my mom had died of ovarian cancer, at age 41, back in 1968. I was 49 at my diagnosis and treatment. I am 53 now. Even though I was not BRCA+, I still felt the connection was strong and the risk was greater for me to keep the ovaries than to remove them. I had stopped my periods when I went through chemo. Prior to that, I was still very regular, and in fact, ovulated just prior to my ooph so would have returned to having periods. The surgery itself was very easy. But I have really missed the estrogen, and feel like I have "aged" more than I might have. I was determined, though, to do everything available to me to minimize the chance of recurrence. I am now taking Femara, after three years on Tamoxifen and a disastorous month and a half on Arimidex. You are right to be cautious, especially of basing your decision on a CA-125. What is your onc recommending? Are you taking tamoxifen? I have pretty mixed feelings about my decision, mostly because I felt better with the estrogen in my body and I now have the lER evel of an 8 year old! But I sort of expected all of this.
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Hi... popping in and out of here to try and get caught up... question.... I have tattoos to do at some point and was going to go back down to NOLA.... as everyone used to rave about Don... now I hear this second name Vinny (I think it was Vinny, now I can't find it)... what's the scoop on the best tattoo guy down there and is there one that works with the Center .... I'm out of the loop..... who's Vinny?
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Amy... After my BC diagnosis, I requested a CA125 test and ultrasound... My CA-125 test came back as 19, where 20 is positive, but its the only one I had, and it is unreliable... My ultrasound was normal... My gyn says to take them out, but he is casual about it. My MO has said different things. One day he says take them out, and another says the opposite... so you can see why I am not hurrying this decision. I was just with my gyn this weekend, for my D&C, and we were discussing it again... Since the doctors go in the belly for the surgery, no time like the present, but I don't want that to be my deciding factor.
I feel I can always have this surgery, in a year, two years... I don't see the need to rush. I am 48 and was having periods until I had chemo. Of course I want to do whatever I can to avoid cancer, but I don't want to cause other problems (bone loss, menapause, moodiness, aging/sagging) unless I know its the right decision.
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Unfortunately it does not seem like the CA125 or TVU's are a good way to screen for ovarian cancer. There have been several articles published about this, here is one that comes to mind:
http://healthland.time.com/2011/06/05/screening-for-ovarian-cancer-doesnt-increase-womens-survival/
The good news is that OVCA is pretty rare so unless there is a family history or a BRCA mutation or some other ovarian issue you might be able to skip it. Of course I know lots of women who don't have any of these issues but had endometriosis or monthly pain/long cycles who had ovaries/uterus removed and now feel a million times better. It really is an individual choice. For me it was a no brainer as I am BRCA1+ and my grandmother was diagnosed with OVCA at age 35 (my age now) The other thing to note is having ovaries out can reduce your risk of BC up to 50%. Just make sure if you are going to do it that you have the tubes taken out as well as many doctors believe that ovca starts in the fallopian tubes - so removal of both is now the standard of care. Hope this helps! Happy to talk to anyone about my uterus/ovary/tube removal in NOLA during my stage 2.
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BDaviscongratulations on having those drains removed!
Running I am glad u r here at homewood suites. Things weren't all rosy for me during hospital recovery but everyone there was so awesome. I fly home early morning this Friday@ 5. Maybe we can meet downstairs during the free food? I've never gone to it bcuz my husband and I are still on Hawaii time, more so my husband bcuz he is still working with phone calls and other stuff.
I'm getting a bit worried about swelling becuz my flight home is extremely long. I think it is 4.5 hours from LA to SanFran two hour layover and then a 5.5 hour flight to hawaii.0 -
BDavis - I don't know who keeps telling you that 20 is positive for the CA -125. The normal range for a CA - 125 is below 35 U/ml. 19 is well below normal - you can look it up anywhere - but John Hopkins is a reliable source, so I have pulled the link for you: http://ovariancancer.jhmi.edu/ca125qa.cfm Having said that - it sounds like your ER levels for your BC were really high. I had a total hysterectomy because of family history. It was one of the hardest decisions I have ever made, because I would have really liked to have another child. My hubby told me we were "done" having kids, so I went ahead and did it. Like Kaitsmom - I feel like that loss of estrogen aged me more than anything else ever has. If I could have done it all again... I may have held off for another 10 years... just saying... You will research like you always do and make the best decision for you.
Hotbutt - Welcome back!!! I used Don - but I am not totally in love with my tatts. If I have them redone I will use Vinnie. He has said that he is going to be doing tatts at the Center periodically. If you are going to have them done there, why don't you find out when he will be there and then schedule them accordingly!
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hey surfa, glad to here you are fundamentally okay after stage 1 - in my experience my swelling wasn't too bad at all on my flight after stage 1 - I went to SFO and then had a two hour drive home. I stood up every 30 minutes or so (I had to pee like crazy!) and I was compressed and wearing the TED hose the center gives you. My swelling was on the flight after stage 2, probably because it was much less time between the surgery and the flight. Hope you are able to meet up with Sonya! Bernice (Besa) is also at the Homewood now and preparing for her surgery tomorrow. Hope you all get to meet up and chat - best of luck tomorrow Besa!
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Nordy... the scale depends on the lab reading the results... for the lab that did mine, 20 was positive... I need to think long and hard... I try to go with IF IT AIN'T BROKEN, DON'T FIX IT.. so I don't know where I stand... Not totally into premature aging..
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Betsy, I am a D cup. I've been a D my whole life with breasts, and having smaller breasts is something I've been asking for through this whole process. The first PS definitely did not do that (or numerous other things I asked for!) with my implant reconstruction. Then with stage one Dr D didn't do any shaping (for lack of a better word), just took out the implants and put in that amount of fat. And it's kind of impossible to figure out what cup size you are with weird hamburger buns shaped breasts, so I asked him to make me about a cup size smaller for stage 2. And he did do that-my breasts definitely looked smaller-but lo and behold I am still a D!
I had stage 2 in last Dec and I thought I shoudl wait a good while to see if I really want another surgery, but I really do! And there are a couple other things I'm hoping he can fix too.
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Betsy, my understanding is that the CA-125 can be elevated from other things as well, including other types of cancer. My girlfriend who is undergoing chemo for a totally different type of cancer had an elevated CA-125 at the time that the cancer was found in her uterus. (leimyosarcoma - very rare). Her ovaries were completely clear of any cancer. And since everything has now been removed and she is now undergoing chemo, her CA-125 has dropped to within normal. Could the breast cancer have caused an elevated CA-125? I am glad you are being cautious about removing the ovaries. It is a tough choice. In my case, the benefit may have been less because I wasn't as strongly ER+, so that made it tough to decide. In your case, the benefit may be greater,because you are strongly ER+, so that may make it tough to decide as well. I feel you will make the right choice for you. You are very thorough. (Interesting thing is that over the years, my CA-125 crept up ever so slightly, though never to an "abnormal" level. But I can't help but wonder if it picked up the BC that was percolating in my body for probably a long time? I don't know enough about any of this, just thinking out loud)
holtbolt - Vinnie is now working at the Center 2 days a month. They fly him down from the Baltimore area. Nothing but the best for Dr D and Dr S! And I think Vinnie is the best there is. Google Vinnie Myers tattoos. Vinnie was down there when I was there last week for my stage 2. My husband popped in to see him while I was getting prepped for surgery. We had met him over the summer when we were on a road trip. We made an appt with Vinnie to check out his work and to have a patch test done since I am allergic to EVERYTHING and had concerns about the ink. I had no problems at all with the ink, and we were more than impressed with Vinnie, as an artist and as a person. We had decided to go to him to have my tattoos done, even though it felt a bit disloyal to NOLA, so I was thrilled to hear that they brought him on board and I don't have to make a choice. It is a bit more of an expense for me to travel there than to make the 6 hour drive to Baltimore, but we love NOLA and it will be one more chance to see all the fabulous people at the Center and to thank them again for all they have done.
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Betsy..For an additional bit of info on the removal of ovaries...My cancer is 98% estrogen positive...my treatment was at Mayo Rochester. No one on my team pushed for ovary removal when I asked about it. I was 50 at diagnosis and not menopausal. I had four dose dense neo adj. chemos 2 weeks apart. (May and June 09) I had a period the first month and none after that, started tamox right after surgery (July 8th 09) and then Rads Sept 09. At my last Oncology visit, having been menopausal for two years, she suggested switching to Femara...I had lots of initial side effects being thrown into that insta menopause...teary and moody and sluggish brain and concentration levels and joint pains.......some dryer skin and wrinkles...some hair thinning...not too bad...but I was also recovering from all that other treatment and trauma of the BC diagnosis...I opted to not do any "side'effect" meds until I rode it out...and after a year or so I do fight the metabolism issues...but if I stay on top of diet and excercise I could maintain ok...but got that old lady belly roll that nothing helped until the DIEP...LOL....still feel like more wrinkles and hair thinning from lack of estrogen...The aromostase drugs deplete the estrogen even more...so I opted to not switch and keep the Tamox for now...my Oncologist supports it because the studies show a minor improvement and some show none...and I can always try it at some point...but I do not want the joint and bone potential side effects...or the additional possibility of more brain fog...cause that has improved...I guess there is the possibility that I will not have side effects on that class of meds...but I like some estrogen floating around...and the potential damage some of the drugs including tamox have on my heart and lipids and blood pressure after two years...I need to find a comfortable balance between doing all I can to keep the beast at bay while not destroying the rest of me....my Oncologist is working with me but initially seemed a bit surprised that I would not want to switch to the Aromatase class and suck out every drop I could...but finally admitted that Tamox was okay too...
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Dana - Being 4 weeks out, how do you feel? And have you noticed changes in your figure after the lipo? I know it can take some time to see a difference, and it will be different for everyone . . . I am wondering what you are seeing at one month. Did you have any fat grafting to the breasts? I am surprised mine seem so firm and swollen again, but then I also have a lot of bruising there, so I assume he did a fair amount of work on them.
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"If it ain't broke, don't fix it"... I wish I had gone with that when I had my hysterectomy... but that is me. Betsy - You will figure it out... and really, you don't have to have it done at stage 2, you could have it done any time. And if they use the Davinci robot to do it, it won't even interfere with your DIEP scar... although they do use a porthole in your belly button to place the camera.
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Thanks Kaitsmom, Nordy for the info on tattoos. I'll check out Vinnie's page.. does anyone have an opinion on Vinnie vs. Don? How did Vinnie get involved with the Center.... is the work done there and if so, does the Center handle insurance billing, etc.? Those who had either Don or Vinnie.. are you happy with the way they turned out? anybody, anybody?
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Hey Amy, today I'm 5 weeks out - woohoo! I have not really noticed many changes with the lipo as my whole mid-section is still pretty swollen from the whole hysterectomy thing. I know from past experience that it takes me about 3 months to settle down swelling wise from abdominal surgery so I'm trying to be patient. My tummy is still flat but everything is swollen in that area still. I did notice much less swelling in my underarms after about 4 weeks so I think they did some lipo there - however that swelling came after stage 1...they definitely grafted some fat to top area of my breasts and they were very swollen up until about last week...now they are looking almost 100% perfect, the scars just need to heal up a bit more before they are ready for prime time.
Still can't excercise which is a bummer, but that is probably more related to the hyst than stage 2...all in good time...
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Hi Ladies...
HOLT... I found Vinnie a long time ago through research and since that day have only heard good things, and knew he'd be doing my tats... It is my understanding that he charges $350 and you can submit to insurance... So between Donn and Vinnie, I vote for Vinnie. I mentioned to Dr D that I had heard Vinnie was coming on board and he said that some of his patients were talking abouthim, so they looked into his work, invited him down and brought him on board, I will be driving to Vinnie in Baltimore when the time comes as he is about 3 hours (or less) away.
AMY M... I totally understand... I too have been a C+/D cup all my life and want to be the same, not bigger... After all settles down, maybe in a year, if I feel I need adjustments, I will get them too.
AMY (KAITSMON)... I think I will get retested for the CA-125... It is possible I would be making a decision based on one test, and I deserve at least another blood draw.
AMY (NOWORDS) and NORDY... And you make me think delaying and being SURE this is what I want would be prudent... I will be starting tamoxifen in December (after all surgery is complete) so I should take it slow and make sure my body can handle the changes rather than getting thrown into total body disfunction. Once they are out, they are out.
So I think my ovary plan is to re-test the CA-125, not have it at stage II, start tamoxifen and then retest CA-125 again (next year) do another ultrasound and see where I am at... no rush as I see it. My only reason for thinking NOW was since I would be under anesthesia and they were operating in that area anyway (and Dr D could fix any scars)... but it seems fairly non-invasive.
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About ovaries out. I was thinking after I was dx'd wtih BC that I'd just have them out to be on the safe side. My onc told me I had the same chance of getting ovarian cancer as someone in the general population. (hmm). But then I did reserach and found that over our life time, the ovaries, even after menopause, continue to eeek out small amonts of whatever, and it's exactly what our bodies need. There are some complications about having them out young. Betsy, I'd suggest you look into it before having them out, just so you are totally aware and don't regret it later. I may still have mine out, but I decided to keep them for now. Onc said there was no compelling resesarch to suggest there would be a benefit to me to have them out. Lots to consider though. I found out I am an extreme metabolizer of Tamoxifen so I know I have that enzyme.
Amy, I have a Marena garment I am NOT using (ha ha ha) and I would be happy to give it to you. Can you drive to Raleigh to get it? We coul have lunch or not if you're not up to it. I found the Marena to be soooooo muuuuuuuuch beeeeeeeeter than the DOM they give you in NOLA. If you don't have drains (this has no zips, you sort of wiggle your way into it).
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You ladies have pretty much helped me decide NOT to have the ovaries out in November, but to do more research, and see AGAIN what my Mo says... I want to be cancer free but I also want to have a good quality of life, and bone density issues, dry skin, moodiness etc etc... makes a girl wonder.
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