TRIPLE POSITIVE GROUP
Comments
-
Lee - so sorry about your issues with the incision. Hope you turn a corner and healing begins
Debiann - this round my taste buds have been my worst SE and seemed to last forever - finally on Wednesday of this week food tasted Ok so I have been eating up a storm this weekend in prep for my next round on tuesday. Wish there was a drug for that SE - Lago I am gonna try the cooking with citrus idea.
Pbrian - Are you using Miracle grow on your hair?
0 -
Lee, "I really hate it when things are uneven/off/unbalanced" , perhaps a touch of your OCD showing. I know, I have it too
Linda, "Miracle grow for your hair", oh how I wish there was such a thing! I think I would buy it no matter what it cost. lol.
Pbrain, you really do look great!
Rozem and ang, I love your updated photos!
0 -
LeeA - so very sorry to hear about your recon issues. I am only partially reconstructed (L radiated side has issues). I decided I am not reconstructing any more unless I feel a very strong urge to do so in the future.
The hardest times are when I put a bathing suit on or summer tops where you can't wear a bra. It's impossible to disguise my assymetry without a bra to stuff. But most of the time I can wear whatever I want and noone would ever know. It also still hurts some when I see women with beautiful breasts. But that pain is easing, too. I was not put on this earth to please men! Weird, but this bc experience is turning me into a bit of feminist. I never expected that one!
It took me a long time to get to the point where I want to live my life more than go through the pain and risk and disruption of my life from more surgeries in order to achieve a body that is "normal" as defined by our society. I'm glad I took a break, though, b/c time has helped me heal my self image A LOT. Taking a break is something to consider, especially if you aren't completely sure about continuing recon.
0 -
Lee I have 3 friends that have had recon that was like the movie Groundhog day. They are all done now and are happy they continued. 2 ended up doing the lat flap and everything was good after that. One did butt boobs. She went through several surgeries to get both her boobs and butt looking right… and then she got breast cancer under the recon in her non cancer side even though she had a BMX. (2-3% chance that a new cancer could happen even if you had a BMX). She had to get another MX. She almost decided to go for another double but then went for a tummy flap to replace removed butt boob. She's glad she did it. She did it even though that diagnosis has her fighting mets. (So far she's doing OK).
I remember each of them feeling just like you. Mad, not thinking it was worth it and ready to quit (numerous times). They are all happy they decided to move forward.
0 -
LeeA,
Sorry to here about lefty...and I fully understand your feelings...and it justs sucks to lose a reconstructed breast. We go into mastectomy knowing that there will be a loss and we begin to mourn from the moment we make the decision( if we had the choice to make), but we feel ultimately it is the best decision we could make, in our quest to never face the beast again. So we accept and move forward. Then we go through all the treatment, side effects, looking in the mirror and wondering. Then as reconstruction gets closer , we see pictures, we imagine, we begin to hope and get excited about having our breasts again. Then it happens, you see two new breast shapes and begin to think , OK I can live with these....and then you lose one and it's like getting hit by a truck. Those around you try to be comforting and say all the stuff you don't want to hear...because in your head your screaming about the unfairness of this happening again....
I always had issues with lefty, wound openings and infections. TE was replaced once and finally removed 11/13. I was flat on that side till 5/21/14. I briefly saw 2 breasts in recovery. I remember looking down and seeing 2 huge mounds and thinking YES !!! They are back, next I remember is waking in the operating room and being very confused. They were moving me off the table, I looked at my chest and just saw a scar on my left side. My recon surgery had been 8 hrs under general, the attempt to save and the removal was done under sedation as they didn't want to put me under general again. My PS just told me at my last appt., I spoke a few times. I said " I have breasts", "I have beautiful breasts" and "Thank you" plus a few other things he couldn't make out. I have no recollection of this. My PS worked for hours trying to save it, nothing worked.
Thanks to having this place and many of you sharing and speaking to, and doing research for me, and sharing pictures. I am better today. I have hope again of a matched set, not sure of plan yet. PS has a plan, but I am still researching. But it took me time and listening to a lot of you. I still have my moments, I had plans for August.... A small beach vacation with kids before school and a special weekend getaway with SO to celebrate his BD ... my 8 week sex restriction from hysterectomy would have been lifted, my incisions all healed and I would have 2 breasts to fill in the lingerie I bought in anticipation..... I am glad he didn't let me cancel any reservations, I am blessed with a wonderful partner.
Thanks all for listening, encouraging, empathizing, sharing.....you are all wonderful.
Vivian
0 -
LeeA, dance and viv - I feel ya! The half-flats! Unfortunately, there are probably enough of us for a baseball team. As lee says, the time lost and prospect of being wheeled into yet another operating room is hard to fathom, but I know I will do it again. I have had this experience twice, one with the expander, and now with the implant. All totaled it will be a year of being half-flat. I don't like it, don't want to do it. Since I know this about myself, and know I need to try this again, I will do it even though it means another expander, then another surgery for exchange. I also know if it doesn't work, I will look at autologous.
lee - I am also a Libra, and symmetry is a thing for me, in all aspects of life. Interesting that we both are.
dance - I am struggling with living in such a hot climate and what to wear - all of live where it is so hot! I have a 34DD cup on the right and a concave mess with a nipple on the left, it is tough to address that with clothing! Standing in my closet I the morning is when I get the most annoyed/bummed.
viv - so glad that your SO is supportive, it makes all of this easier.
0 -
I need a lump redo in September and I'm considering a umx or bmx instead. Still undecided if I would do reconstruction or not. I have to say, you ladies are scaring the beegeebees out of me. WOW what a process recon is!!!!! The PS makes it sound so easy. Wishing you all the best and so sorry you have to go through this.
0 -
debianne, why do you need a lump re-do?
0 -
Aries on this end, but we kind of like symmetry also and strive for perfection.
Special, I just mentioned to Moon on another thread...How I read both of your history and your posts and I see the struggle and successes and challenges of another loss and it helps me to go forward as I continue to read your posts. I want a lefty, but not just any lefty. I want the match to my righty. I have not been able to accept that a match set is probably not possible. On 7/8 my discussions shall begin with PS. Not that he has been speaking and planning on all of my visits, I just have not been participating. I have my DD righty. That is all my skin except for flap piece, which will go away in phase 2. Lefty is concaved and has lost a lot of skin. skin is also very thin. TE is an option but PS has said likelyhood of skin tearing and not closing are high even if we go with a goal of smaller size. He recommends lat flap tunneled under skin. This will give me football looking flap under nipple or possibly higher than nipple to IMF. To create skin for an implant and some inside breast to cover implant.
I am working on my what if list. Some based on research, some just ideas. Smaller size, artery use, grafted veins. If pedicled flap has it's own blood supply, once healed can you free flap and used it as a blood supply and implants in both if I need in one. I am working on accepting the reality that lefty will have more scars,visible flap and have different skin than righty. Also righty nipple is currently stretched to the max and lefty is shriveled but both still have feeling.
Special, I believe you made mentioned once about sensation. I researched and asked my surgeons extensively. Sensation in not about any breast tissue being left behind. I saw pics of my nipples basically inside out and cored hollow during mastectomy. It has to do with nerve endings and regeneration and I have no idea after the pic I saw, how mine survived. Then they can do things to cause scarring in nipple so that it remains a bit hard and not just flat. At PS office after Diep righty nipple was tested and pic taken. It is stretched so much that when cold there were only 2 small places that responded around areola (basically from 4 to 10 oclock straight line)and those areas have been notated. Those areas will not be cut if I wish to preserve the senation I have . My whole areola used to respond.
Take care,
Vivian
0 -
debiann I didn't have issues with recon/implants but I didn't have rads. I have also heard the longer you wait after rads the better. Gives more time for the skin to heal. I think some of the problems is some PS will continue several times before going for the lat-flap. I think you need to figure out plan B. I know I did.
When I first met my PS the thought was I was going to need rads. (actually in a gray area and got a pass). I told him up front I didn't want the lat flap (tummy wasn't an option for me). If it didn't work I would go flat. Now that I have recon I don't feel that way. I think I would go for the flap knowing what I know today .
0 -
specialK - I can only imagine how difficult it is to match the DD on one side in clothing! I really feel for you! My "good" side is an A cup, so matching to it and disguising my "bad" AAA side is a much easier process.
0 -
I had my first lump in April and got close margins. After chemo I need either a lump redo with rads or a mx with no rads. PS said implants or deip flap are both options. If I don't want recon he can do some fat grafting so I'm not concave. He's also up to doing the brava fat grafting system, but it would be his first time and it would be $3000 out of pocket for me (insurance doesn' cover the brava cones.) I'm truly feeling like I need to be at the end of this nightmare, not undertaking a recon project, so I am leaning toward umx with no recon. Most people tell me I will regret this decision in the long run. The DH is supportive of whatever decision I make. Wish someone else would chose for me.
0 -
Debiann,
Don't be afraid of recon because of what you read. You can go to the recon thread that you are thinking about and see many successes. Many go perfectly and without a hitch. My PS office is full of his successfull Diep patients that I have befriended and have seen their recon breast. He does great work. My chest veins were the problem. First time he encountered a problem like me. What type of recon are you thinking about if you go the uni or bmx route?
Vivian
0 -
Diep flap appeals to me more than implants because I suspect I could never get used to them. What kind of problem did you have? Is everything ok now?
I would really like to just do umx now with no recon. Shorter recovery time and I could get back to focusing on life and work. I'm a teacher, so if I decide I want recon, I'd rathet delay it till summer when I don't need to miss work. PS said its an option, but if I know I what recon I should do it right away. I didn't ask him, but is the scarring different if you do immediate vs delayed recon with the diep?
0 -
debiann as for scaring that would be a good question to ask your PS. But I wouldn't be surprised if waiting actually helps. All the chemo will be out of your system and if there are rads issues that also allows for more healing. I know my port scar (from removal) and my nipple recon scars look much much better than my BMX/Recons scars. I think chemo messed with my healing.
0 -
Opps sorry.vivian, didn't look at your name when I asked you what happened to your diep flap after you just posted your story. The one perk we now have is blaming stuff like this on "chemo brain" lol.
0 -
dance - yes it is crazy to try to match it! You should see the mastectomy bras I got - it is like wearing armor - they are crazy big to hold the gigantor prosthetic! They come up high in the front to help control the gapping if you lean forward, but they are definitely more secure at holding the prosthetic rather than some of the makeshift stuff I have used in the past. I have learned a lot from the ladies on the "all things bras and prostheses" thread and went to Walmart for some cheapie bras that also are working better under some clothes, but still holding the prosthetic. The hard thing is it is different matching a natural breast versus an immovable implant. I don't wear low cut things, never have, but also not wearing turtlenecks in this heat, so it is a dilemma.
viv - I am glad I can provide you with motivation to proceed, I try not to dwell too much on the past, or the future, but just get through this time period with some hope for a solution that works and satisfies me. Some days that is easier than others, not gonna lie!
debiann - don't be too afraid because of what you read here - keep in mind that many of those who had successful recon have moved on with their lives and are not posting on this site. You tend to hear about the problems more than the successes. DIEP, or other auto procedures, are always bigger surgeries and have the potential for issues. Not to say that regular implant recon isn't, but you can also consider a direct-to-implant procedure if you want to stay on the smaller side and do it all in one surgery, if getting things done more quickly is appealing and you decide on implant over auto surgery.
0 -
debian, you do know that delayed reconstruction is a good choice too? Right? Just cause you don't want it now doesn't mean you won't later. Waiting has some things going for it. I think my 2nd try was too soon after chemo. If I had waited I might have saved myself another infection. But i wanted to be finished. LOL. Haste makes waste is an oldie for a reason! LOL. So if you need time Take it. I know people think recon is easy. I thought so to. But it really isn't as easy as it should be. Lots of people go sailing through the process but I'm not one of them. And most radiated breasts are not either. We just have to deal with what we are given. And right now, with my TKR recovery going along not too bad, I'm keeping fingers crossed. Besides who besides me gets the big D from sx and pain pills? Walkers and moving fast don't go together very well. Especially when I have to turn the walker just right to fit in the bathroom door. Slows me down when I need to move faster. LOL let's just say I love my Samsung steam washer and dryer.....
Much love to all
0 -
aww, moon! i am sorry. but one day soon, you just may be running circles around us!
0 -
Moom, delayed recon does appeal to me, I need a break. The PS would rather not do it this way, but I didn't ask him why. I always think of questions after I leave the office. Apparently "delayed" is a theme for me, lol. Hope you are feeling better soon.
0 -
debiann it sounds like a good plan to me too. I bet you'll have better results and less chance of infection if you wait.
0 -
I'm curious to know what other's were told was the risk of local recurrance with lump vs. mx I was told 5% with lump and 1-2% with mx.
0 -
Debiann-that was pretty much what my docs said too. I told them to quit giving me stats though, as I never seemed to be on the right side. As Heidi Klum said, "either you are in or you are out."
On the recon side-
Lee-pseudomonas is what I had also. It did not culture the first time. Second shot, PS made them grow it longer. Took over a week to show up. I was on chemo. My onc and ps freaked out. Other than the pink area, I didn't really have the typical symptoms. Lots of antibiotics, both oral and IV, while they kept filling. Finally went to surgery with the intent of switching to implants if it wasn't bad, or removing if it was. PS said he expected to see all kinds of infection and alloderm floating around. Instead, he said with the exception of that spot, it all looked good. In the end he removed them. When I was whining about why he said he was too worried that if he put the implants in and it didn't resolve far worse things could happen. I said like what. He said Sepsis.
That was all it took to shut me up, lol. I think my body just couldn't fight off the infection fully while still being on chemo. When I look back in hindsight and wonder if I would do something different, I think no. It helped me to wake up from surgery and have those little mounds there. Felt like I had a project. When they came out, it was hard, and I think I would have been much worse mentally if I had started that way.
But, I didn't handle any of the early stuff well.
On food-nothing warm or cooked sounded good to me. I made lots of cold smoothies and ate salads (in my home after washing carefully-I did not eat salads out). My onc said I didn't need to follow the special diet unless my numbers dropped.
0 -
Thanks to everyone for your input, encouragement and it's good to see all the discussion (in general) on this topic. It's so different for each one of us, reconstruction or not. There are often overlaps but each situation is unique and I continue to be amazed at how knowledgeable everyone is on the different procedures. We definitely have to be our own advocates which isn't the easiest when we don't always feel the best.
Debiann, yes, delaying is a good thing. I was pushing things because of the high insurance deductible and I suppose I'm paying the price. If I would have had a crystal ball I would have seen into the future and known that we ended up with a lower deductible in 2014 due to insurance changes but I was anxious to get it over with and didn't want to spend the extra $$$.
Fluff, good grief . . . I'm not even going to google sepsis along with the P word. The infectious disease doctor said this grew really fast which now really freaks me out. I'm seeing the PS tomorrow. He did say that it basically looked like it was confined to one area. I sure do hope that's the case. I was on two days of IV Vancomycin that wasn't even necessary but I was also on another one (IV) that was effective against it (started with an M - one I hadn't even heard of before). Since being home I've been on Cipro twice a day. I'm glad it all worked out for you and I think chemo really does impact our ability to heal. In the case of my first "final" reconstruction, I was just five days past my last Herceptin. Overall, radiation has been my downfall but I chose it and there's no going backwards on the timeline.
SpecialK, yes, the wardrobe planning looks like it will be one malfunction after another. I don't know the cup size of righty (I don't think it's a double D but it might be a single D - I never got out of a sports bra) but lefty is a denty and I'm not sure how soon I'll be able to use a prosthesis. Like you mentioned, I'm sure I'll keep on with it (reconstruction) as well.
0 -
Also adding along the way because I can't remember everything from one page to the next:
DanceTrance, I love your new photo! Your hair, your face -- beautiful!
lago, I didn't even know about butt boobs but very happy to hear of your two friends who are happy with their lat flaps.
moon, I will search swim poofy.
0 -
Adding to all this:
naiviv/Vivian, you described it all so well in your first paragraph. The loss, the expectations . . . all of it. I truly hope you can get everything all worked out in the months to come. The matching part is a hurdle. I'm OCD (yep, Bren58, you're right -- it really does play into all of it) and I find myself making concessions (?) along the way. At first I thought "how can I have one lat flap and not the other" but now I'm just hoping something will work out.
With the first "final" reconstruction I found that it was better not to look too closely at the photos I was sending to my surgeon back in LA because the photos really showed the disparity in size. This time, my surgeon is in the Phoenix are and photos aren't necessary. I was thrilled/very happy with what I was seeing in the mirror and there's no way I was going to commit it to iPhone.
Anyway, I'm feeling better about it today than I was yesterday and I'm hoping I'll feel better about it tomorrow than today, etc.
It's a journey/experience/whatever and we just keep moving forward. Some days faster, better than others.
0 -
hello to all lovely ladies, i am sorry i always come here with questions. i am 7 months out of chemo and July 09 will be my last Herceptin, but somehow i dont feel too happy about it.
my question is what kinda of foods or diet should i be eating to gain some weigh? I lost about 13 or 15 lbs since I started chemo. i always lean all my life 5'4 112 lbs and hard to gain weight and for me to loose 13 lbs i am not too happy about it. i feel so skinny n boney. these are what i am eating weekly foods are: white/brown rice, chicken, fish, tofu, boiled eggs, beef once in a while, fruits and vegetables, water, almold milk, and green tea. i used brown sugar for cooking. Please give me some suggestions what i should do or drink to gain some weight. pls dont tell me to drink ensure, i dont like the taste of it. thank you ladies!0 -
good morning!
Wow! Lots of activity here these past few days!!
Hubby and I went to Barrie Ontario over the weekend to see races at Barrie speedway. Very cool! There was a cancer car there. I spoke with the driver - he was very cool!! The weather was beautiful - so nice to be outside!
Last week was a great week for me - my SEs seemed to be over and here we are on Monday - time to get my bloodwork and see my onc. I usually do this on tues but since tomorrow is canada day they pushed me back to today
The SEs with my last round of FEC were the worst. Dry mouth, the roof of my mouth felt like sandpaper, food tasted like cardboard and all of my tummy troubles for the first 8-10 days.
I am just dreading starting taxotere this wed. A friend of mine told me that a year later she still has trouble with energy and feels tired! Others have breezed through it. I think that herceptin will be started as well. I was told by others that herceptin was nothing with no SEs
I'll be talking with my mo about all of this today then get prepared for returning to the chair this wed at 9. My hubby's cousin will be with me on wed. It will feel strange not having my hubby there. 😒
I hope that I'll be able to continue my exercises!!! I know that this sounds stupid but I am very concerned about gaining weight. I've been trying to knock off a few pounds in prep for this
I hope that everyone has a great day!!
0 -
soriya123 I would talk to your doctor about this. It sounds like you are eating healthy. Be sure you are eating big enough portions. Also lifting weights is a good way to put on muscle weight. You really don't want to put on fat weight. You might want to find a trainer.
Footballnut you look great. Don't fear the Taxotere. I know I would have been happy to do 4 rounds. Also you will not be getting it with any other chemo. I had it with Carboplatin (as well as Herceptin). Having only the one agent is easier on the body. If your SE are bad they will reduce your dose. Seriously my first 3 rounds of it were pretty easy. Even #4 wasn't too bad. Love the photo. You really do look good.
0
