TE TROUBLE
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chick - having a defect is more common than one would think - just like imperfect symmetry in natural breasts is pretty common. It has never been mentioned in any of the imaging reports either. I think I may make him show me if it is in my record - maybe he is underestimating my curiosity and just threw that defect comment out there to help explain why I have two different amounts of saline. Not sure...
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Before my BMX, my PS said to me, "They're not going to be totally perfect." My answer to him was that they already weren't perfect.
From the get go, I've steadied my perspective on getting the cancer out and staying healthy. And of course new perky foobs are a total welcome!
Have a great weekend,
T
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Chick-I see my PS on the 17th and we are talking nips and tattoos then, as well as fat grafting. I am kind of torn on the nipple thing. I was looking forward to going braless when I wanted to, and am not sure I can do that if I get the actual nipples. And the 3d ones look really good. I'm also having him give me a price on full abdomen lipo (am thinking if I already have some, I might as well have a lot)
Is everyone that has the actual nipples constructed happy and do you have to wear a bra all the time now?
SpecialK-I think you are a military spouse? Have you been following all the work the military medical research team is doing on the herceptin vaccines? It looks amazing on first look, and it appears that breast cancer patients connected to the military get some preference. (Although I am not positive on that).
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I had some soreness for the first time after my fill on Friday. I think I have one more fill to go on my right before he will start filling both sides at the same time. Anyway, my right side was just sort of a numb sore if that makes sense. I did a lot of driving and running around on Friday and Saturday. I drive a stick so that didn't help any. Sunday I was basically a zombie on my couch all-day. Still feeling a bit of soreness on my right side, which feels like it's coming from right under the TE. It' snot bad, just a little anoying. I guess as my skin starts to expand more, I'll be feeling more soreness.
I will be having surgery to have my ovaries and fallopian tubes removed. That should be scheduled in a couple weeks. I met with my gyno today. I'm relieved about that and he is referring me out to see another oncologist for a second opinion. It ws a good visit today! I'm feeling pretty good. And with all the sleep I did yesterday, I'm feeling refreshed.
Michelle :-)
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Hi ladies! I got another fill yesterday, and all of the pain from the fill port sitting on the nerve is gone! I feel really good. Doing lots of walking and biking, back at the gym.
Renn and Ann, how are you guys??
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Momof3infla - I'm feeling much better after having IV antibiotics for 2 weeks, although I sit here with only one TE now! The missing one is the rads side --starting rads Jan 16 for 6+ weeks. After that -- wait a year or more for a flap reconstruction of some kind. I kind of lost my battle to "Save the TE!" The other TE never caused me any trouble, and my PS said I can keep it there indefinitely (yikes, who would want that discomfort for a lifetime?), and that the expanded skin will be useful for a flap surgery, which he recommends instead of an implant on only one side. The cancer side had skin involvement, and with all its trouble, PS doesn't think the tissue will support another TE and implant later. I'm thinking DIEP but have many months to research it and find a PS who has done many of them. I'm glad you got relief from that nerve pain!
SpecialK - Your exchange time is approaching. How exciting! You've worked hard for it.
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OK, this is probably a stupid question, but after exchange surgery and we are all healed up, do we get mammo's again or MRI's - how do we monitor the breast tissue area? I was under the impression that I was done with mammo's, but what happens after implants?
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Good question. I was told they do MRIs because there is not breast tissue. But I think in some cases some breast tissue remains.
michelle
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I was told no more mammos.
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Ann, it's good to hear an update from you. I think of you often. I hope your radiation treatments go well with minimal complications.
I was told no more mammos as well. Gee, after my OOPH I won't have any reason to have an annual physical. (as if I can escape the dr's office that easily). my PS told me he doesn't subscribe to the MRI every three years to check the implants process. I expect we will talk more about that once I actually have the implants instead of these TE's. I have one more fill to go until I start my three month resting period. I'm thankful for muscle relaxers!
Have any of you altered your diet after your cancer diagnosis? I'm doing some serious research and had a revelation...I chose aggressive treatment for my cancer, why would I not also choose a healthier way of eating?
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MT, I totally gave up Diet Coke and now drink a half gallon of unsweet organic green tea daily. Also going for more protein and lots of veggies/salads, etc... No sugars or sweets. I do like my wine though lol.
I'm thinking MRI's will be the yearly plan, and the MRI won't add any extra radiation, from what I understand. Good to know, even though I have a long way to go before this reconstruction is complete.
As always, thank you!!
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All - thought today would be my last fill then wait for exchange, but developed a rash over the front of the naughty side (of course) so PS was wanting to be cautious and not insert a needle and possibly drag a a problem through the hole. So... more waiting.
I also am trying to be sensible and proactive with the eating plan. I have had no soda or sweets since the 1st of Jan. I had become somewhat dependent on having one soda a day, especially in the after noon if I felt a little lightheaded, like low blood sugar, but no more. I am shooting for more organic, no soy, no (or very little) sugar, lower estrogenic plant based, low glycemic. I have 15 extra pounds, which seems to be a lot of fluid because I can't get my wedding ring on or many of my shoes. I am hoping that my last Herceptin next week means the fluid will start coming off. My MO allowed me to resume the diuretic that was prescribed during chemo, but I keep forgetting to take it in the morning! I will be having the monitoring conversation with MO next week, so I am not sure what the plan is.
Ann - glad you are hanging in! Have you thought about going to New Orleans for DIEP?
Fluff - I am a mil spouse (a retired one, anyway!) and I am aware of the vaccine development. I have not looked into it in any depth - also, I am guessing that the military spouses that will have the most access are those who live at or near large military medical facilities. I live near MacDill AFB which only has an AF clinic. All of my treatment, with the exception of routine imaging and echos, has been done in civilian facilities. It looks like this vaccine trial is in San Antonio, which is home to several large military treatment facilities, including Brooke Army Hospital and Lackland Air Force Hospital.
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I tried altering my diet to no soy, but have settled on minimal soy. Everything in moderation right!
So I think my left side has "dropped". It seems lower then my right but I can't tell if it is the scar line giving me that perception or what.
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SpecialK - Yikes, I hope that rash resolves quickly. Yes, I have thought about going to New Orleans for DIEP, but if I'm on my husband's current insurance in summer 2013, it may not cover having DIEP done there because I can get it in-network in Tampa. Who's the best at Moffitt?
I had given up sodas for 2 years before dx and had a very good diet and supplements. Then what do they offer at chemo to console us? Free soda! So I have been indulging since then, but intend to get off it again and stick with water and tea.I need to reduce carbs and lose those steroid-induced pounds too
MTnester - I have heard no more mammos too with TEs. Not sure about the frequency of MRIs. PS told me that with only one TE, I still cannot have an MRI on my no-TE side, due to the metal port of the other TE. I thought they could direct the MRI better than that. So assuming I have the TE more than another year, there is little monitoring that can be done to the flat no-TE side. Is PET/CT scan sensitive enough to pick up recurrence and does it have a high false-positive rate? I have questions, but I'm thinking more about managing upcoming rads than the later watchfulness.
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I am off gluten, dairy, soy, eggs, peanuts,and sugar (mostly). All I drink is water. I had been eating this way for about 1 year before diagnosis with occasional dairy slipping in. Have been off gluten for about 5 years. I was working with a naturopathic dr on reducing inflammation. Since BMX in June I have gained 20 pounds and seem to be holding onto a ton of fluid.I can't wear my rings and all my socks leave marks on my legs/ankles. I have had 4 surgeries since April and now have LE.
On the bright side; my implants have been setting nicely and look quite good. Now if I could lose this weight they would look even better,
Sending hugs to those of you who are still waiting to get to this point.Not sure what they will do for imaging now but I see the breast surgeon on the 24th of this month and I am sure she will let me know.
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I gave up diet coke a year ago...actually two years ago, but then like a fool started up again. I'm currently on a one a day kick but I am ready to give it up. I felt so much better without it - crazy how your body can crave something so bad for it. I like my wine too, but that's been easier to give up because it gives me horrendous hot flashes. I'm working toward eating 9 servings of fruit/veggies a day and eating lean meat. Any grains I eat are whole grain, and I am going to limit my starches/carbs. I lost 60 pounds two years ago by following the Ideal Protein diet. Guess what...I had 3 soy protein products a day for 9 months. I can't do that anymore!
SpecialK-hope the rash clears up quickly for you! I am also a retired military wife - DH was in the AF for 4 years and in the ANG for 16. We visited Ellsworth AFB last weekend and decided we miss the military life. (not the deployments though!).
OK so ladies - anyone have experience flying with a TE? We are trying to plan a long weekend, perhaps in Vegas or New Orleans, and I'm expecting major hassles going through security, even with a card from the PS.
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Eve, my TE's hurt like that until I got to about 200cc's. It seemed like the port and edges 'lifted' off my ribs at that point and it was much better - still tight but I didn't feel like a nerve was being hit anymore. I started with only 50cc's beccause I was tight and had 50cc's per fill every 2 weeks. Hope yours gets better too!
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MT - I just flew in December and had no problems. When I got to the airport I stopped at the first TSA person showed them my TE and portacath cards, I had them in my hand, not my luggage/purse. I asked them what they wanted me to do. They put me in the cylindrical x-ray, and did a very nominal patdown. I said at the outset that I was willing to go to a private area for the patdown as long as I could bring my personal belongings. They said it was not necessary, and they only touched my shoulders in the patdown. It was a piece of cake, and the experience was the same at the outgoing airport and the incoming airport. There was no delay, inconvenience or unnecessary attention drawn to me. The only confusing part was that a little dog belonging to another passenger (that could not go through the x-ray, obviously!) was handed through to the TSA lady and she tried to give it to me!
My husband still works in the last job he had, he retired from active duty in '09. They civilianized his position to retain corporate knowledge, so we still get to have the military thing. Surprisingly he still loves it, and he spent 28 years in the AF.
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MT-Flew in October to Jamaica. Did the same thing SpecialK did and had cards in hand and right away informed the agent. Had to go through the XRay machine and pat down.
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Thx for the info on flying. Wanna go to Napa Valley and then mountains with fiance in July,begged him to go to San Fran which we normally do to escape the summer heat here but he wants to visit some cousins in LA. Its hot there in summer. Waiting for surgery date,so scared, the BS not too hot on implant idea and I worry about complications and which to choose saline or gels,no gummy bears in USA so far..at least I was not offered any. Are they better? What are they? My biggest fears are chemo,ports,and complicays with TE and implants. I want everythg to go smoothly so I can travel in July to Calif. My fiance says dont worry they got docs in Calif. Yeah but....my middle name is super chicken...I almost pass out when I get blood drawn,dunno how I will ever get thru surg. Guess cuz I had a uterine rupture with my first birth and was in a coma for 5 days. Now I am so nervous around docs.
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Layla - hello! Why is your BS not on board with implants? Saline implants are more firm and feel less natural (heck, none if it is "natural") than silicone. Cohesive gel implants are the technical name for gummy bear implants. If they rupture, or are pierced, the gel does not leak out. They are available everywhere in the U.S. Don't want to put a damper on things but if you have not had surgery yet, and are expecting chemo, you may not make a July trip. Do you currently have a surgery date?
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I'm so glad we're talking about nutrition in here. Before this diagnosis I was so good with my eating. I pretty much had soy cut out of my diet. I'm allergic to dairy and don't like milk so that wasn't an issue. Now that I'm feeling better, I'm finding it so hard to get back to that. Last night I was rummaging. I wasn't hungry. You know what I did? I opened up a can of chocolate frosting and got a big spoon and dug out a big lump! Why did I do that?!?!?!?!? I have gained about 50 pounds. Part of that was depression and it was fueled by all the casseroles that were graciously brought over to my home during all of my surgeries. That in turn fueled even more depression and laziness. Ugh! I want to break this cycle. I'm finding it hard to get in touch with the old me and buckle down! I want to look good for my daughter's graduation in June. I need to get on this! Ugh
I flew in September and didn't have a problem with my TEs. I let TSA know I had expanders in my chest. They patted me down gently. No big.
SpecialK - I hope that rash is nothing! Fingers crossed! X
I go to see a neck doctor today. I'm so excited. I've got spurs on C4/5 and C5/6.
Early tomorrow morning (6:45a, bleh) I have my first appt with a lymphedema physical therapist.
Michelle
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Michelle- I am laughing because I did the icing on a spoon thing one day too. I had effectively removed all junk food in an effort to get back on my healthy eating and that was the only think I could find. I am doing much better now!
I joined the let's post our daily exercise thread and that is making me feel a little more accountable with regards to exercise. My oldest niece is getting married in August and I want some of this weight gone by then. If you have not seen that thread; I would recommend checking it out. There are some very motivational ladies on there.
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Thanks for the flying information, ladies.
I have done the rummaging thing too - where you eat whatever you find just because you can. UGH! I've gained 20 pounds since my diagnosis due to stress eating and yes, all those wonderful casseroles people brought. I cut myself a little slack for a while -- but now that I'm on a somewhat even keel with the treatments etc. (and yes, Effexor played a HUGE part in me feeling better) I'm ready to take better care of myself. Ginger I'm going to check out that thread. I need to be held accountable!
Welcome Layla - I wish you all the best with your treatment and travel decisions!
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ginger - glad you can laugh, lol! I'm sitting on my couch watching tv to boot while I was licking the spoon. With each lick I was like...you disgust me, but I couldn't stop! It was like the gorgeous rock hard man who treats you bad, but you keep going back cause the sex is good! LOL
I had rid my kitchen of everything that was bad. But I went to target on Sunday and had bought cake mix and frosting cause it was a really good price. I like to keep that stuff on hand in case I need to make cupcakes for my daughter or something. I foiled myself!
I've seen that thread. I'm gonna get on it. I was using the 'cut me some slack' line but I think I'm passed that... lol
Michelle
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O.K. So my first surgery was scheduled for October 31st. I ate the first bag of Costco Halloween candy to calm my nerves. Surgery was rescheduled to November 8th. Finished the second bag of Costco Halloween Candy. And then - a THIRD postponement to December 5th!!! I discovered that those Candy Melts you buy at Michaels to cover cake balls with are just as good eaten straight from the bag, plus you save all that energy and mess by not making the cake balls.
Amazingly, I was down ten pounds the day of surgery.....AND THEN CAME THE KILLER CASSEROLES!!!
Ten pounds, gained back - I think - in one sitting.I am so glad to see this mentioned here...they showed up day after day and sometimes even when we weren't home...they snuck up on our front porch!!! I wonder if the FDA has any idea how dangerous these things are....thank you mrochon and MTnester for bringing this menace to light!!!
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I was reading this on another thread, but there is a site called www.fitday.com that is used by a number of members that are on threads that I participate on regularly. It is used as a tracking and planning tool. I have been very diligent since Jan 1, and am considering using this. Am I lucky that I have remained casserole-free, or should I be sad that nobody made me any?0
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I didn't get any casseroles either. I got gift cards though. Still have 10 chemo pounds I just can't lose!
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Okay, for a while I was telling myself it was the tissue expanders that weighed so much -- but the truth of the matter is I am struggling to get into my favorite pair of jeans. I can't even zipper them up. My hormones are also all over the place with my cycles and I know that's not helping matters. But the first step is to stop munching on the Doritos, cookies, and anything else that strikes my junk food fancy.
Just came back from the grocery store with fruits, vegetables, brown rice and healthy meals. I bought a box of those 100 calorie pack cookies -- it was so depressing to see how those cookie sizes shrunk.
T
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Hi Ladies, do you mind if I join in? I had left breast removed 3 years ago and right one removed at the same time the TE's were placed. There was 120cc's filled at the time of surgery. My next fill didn't happen until 3 weeks later and of course, the scar tissue formed around my expander. I received 90cc's on both sides the first week, 90cc's on both sides the second week, but had to go back and get some drained as I was in a lot of pain. Yesterday. I got 60cc's on each side. I'm looking at my chest and happy to see that I have some cleavage for the first time in 3 years, but my radiated side, looks like there is a dent in it and on my right side, the bottom of my breast feels like a shelf. Is this normal?? And do all fills hurt or does it get to a certain point that it doesn't hurt. I'm thinking it is because of the scar tissue, but I could be wrong. If that is the case, I'm in for a long haul.
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