August 2011 Surgery Group
Comments
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I just had to stop in and check in on you girls.
I am not having reconstruction done, but have yucky hanging flaps where they did the "skin sparing" BMX , so that if in the future I wanted it done. I DON'T !!!
I am hoping when they do my second surgery for the cancer left in my skin they can just cut that part away when they have to do the skin grafts... Its an ugly reminder off boobs that arent there anymore. The scar's are enough.
Hope everyone is doing well...I just got out of the hospital with pneumonia....12 days after my first chemo...I was so mad..The Dr put me back on steroids and I was FINALLY feeling good again!!! I was madder then a hornet..lol
DebbiMy blog ~http://atoosassygal.blogspot.com/
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Hi my August sisters. bmx 8/23 Now doing dose dense taxol first x4 then on to ac x4. chemo should be done by end of year then on to rads. No recon yet--surgery was hurried do to my control freak personality. Still sore where drains were for me on my sides so can only last an hr on each side before getting back to my back ERRR! Cording in left arm is aweful--18 nodes taken. Going to ask for PT script to help it. Right side not as bad--only took sentinal on that side..rocking the partially bald look right now. Made myself a bunch on little head covers--was a fun little project. Cannot work as there are way too many germies around there for me--own a children's resale store and some real gross stuff comes in. Sorry to any who have had a slow go at recovery... Can't wait to be done with all this so my family and I can go on that vacation we were supposed to take on the 30th of August for our 25th anniversary. Happy healing to all!
Maggie
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Nanadeb, good to hear from you -- it sux that you were in the hospital. Lots of detours for you...hang in there and hope you can move through the chemo.
Mags, keep moving toward that vacation goal. Sorry to hear about your left arm. Hope it resolves with PT.
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Nana...geez. Did they tell you that they were going to leave the flaps? I'm so sorry. That just doesn't sound right when you've clearly decided what you want (or don't want). And pneumonia! ugh. I'm glad you're out of the hospital.
Mags, before you do the PT--I just wanted to share this. I asked about PT and the nurse who calls me from my insurance company (it's a service they provide for free) told me that you only get the PT for 60 days (on my insurance) so make sure that they are the 60 days you want--a few times a week. So, I decided to wait a while and see how the cording did (I didn't have the extensive surgery you did...just a few nodes taken). But my plan was to recover and THEN do the PT when I could really totally participate...y'know, delay my 60 days a bit. I just wanted to caution you to start those days (if that's how your insurance works) when you're ready to do it. But, dang, it's been a while.
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dogeyed-my fluid gathers thruout the whole breast area. If I tap my chest the skin ripples like a waterbed all the way over to my armpit. It has never pooled into a pocket thing. If it fills up too much my incisions will start to fall over instead of looking straight out. It has never been uncomfortable even when there was as much as 100cc. With no recon it is very easy to see when the fluid starts gathering.
Now the draining part is not much fun. She has poked the center of my chest so many times it resembles a pincushion-and feels like one too. She keeps telling me I should have no feelings in that part of my chest-but she is very wrong about that.
I hope you can get your problem resolved becasue I think mineis never going to stop!!
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LILY, well, then, I do think mine are just fatty areas from my old boob. I remember when I heard the term "dog ear," I knew that's what I had, but wanted to make sure from you. Thank you!
DEB, great you stopping by! Ye gads, now pneumonia! I recall many of your earlier posts at this website, and you have had more stuff happen to yourself! We may share something in common, you mentioned them having to do surgery again because of cancer left in your skin. Girl, I got IBC, amongst my several cancers, and it affects the skin. I'm wondering what part of your cancer managed to get on there. See, I had a scar-like smudge that formed on my boob, and after surgery, I could have sworn a bit of it was still at the incision, even tho they said I had clear margins on the incision. So, it has worried me to no end, it's still discolored right there, I'm in rads now and hoping that will "kill it." Anyhow, that's why I ask, if you happen to know. Doc said it wasn't that scar, rather bruising from surgery. GG
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Hi all. I have not had the best of times since my 8/31 BMX/Te's. I ended up with a post op infection in my right expander fill port. Had 16 iv infusions of cubicin. The infection appears to have all cleared up it caused me considerable amount of pain but so far I have not had to have the expander removed. I see the PS tomorrow I have not had any further fills. My oncotype test was 30 so I elected to have chemo t/c x 4 my 1st dose was 10/7. I ended up in the ER was severe menstrual bleeding and nose bleeds I am being treated for anemia. I had to have a Liver ultrasound for elevated liver enzymes. My liver is enlarged but no masses. They want me to have a colonoscopy because of the anemia.I need to see a gyn for fibroids and uterine wall thickening Endless visits to Doctors. I thought all my margins were clear but I guess not and I will be receiving rads come January. My employer sent me a letter yesterday that they will no longer cover my health insurance so I need to pay for Cobra .I am on short term disability and cobra is very expensive. I have no idea how I am going to come up with the premium. Cancer Sucks
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Maggiestatas,
So sorry to hear about your infection and your reaction to your first chemo.....not to mention all the other stresses that are being put on you. We can only deal with one day at a time and one by one accomplish the important things. About the insurance, that's just such an unfair part of life for so many. Maybe there is some help out there....after all they have to spend all that 'pink' money somewhere.
Hugs and prayers
Joan0 -
Maggiesistas, I have a friend who has no insurance and they found programs to pay for all her DR visits, scans, chemotherapy, MX and now rads. She doesn't even have to pay a co-pay. I don't know if you qualify for any of those programs, but I would try to find a social worker to talk to, or look to see if you can find a phone number in some of those info packets some of the DRs give out. If you can set it up like her, you won't even have to pay a co-pay- its a really excellent program! It also pays for her meds. Thank God there are programs like this because not all of us have a job right now or can work, or have good insurance from work. You should not be stressing about how to pay, you should be focusing on healing from surgery and figuring out what you need to do about all those other symptoms. My heart bleeds for you. I hope you don't feel too sick and tired to reach out for some financial help, because you deserve good care without having to worry about stupid Cobra,
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I have a surgery issue I want to bring back up, where I had a discoloration mark on my boob that appeared just before I was diagnosed, and I told cancer surgeon several times to be sure to get that off, along with what turned out to be a melanoma mole. He gets the mole off, but maybe a 1/2-inch piece of that discolored part was still there! I was so annoyed. So, doc looks at it and says it's probably just a bruise from surgery. Well, folks, that was three months ago, I'm almost done with rads, and that thang is STILL THERE. Sooooo, rads doc came into rads room yesterday to mark me up for my final boosts next week, and I reminded her of the place and asked her could she please blast it to kingdom come, and she said, "I think that can be arranged,' and she was marking my incision line with tattoo dots, which is where this thing is. I hope it explodes and vaporizes and leaves an ugly crater after next week. Obviously when i see my cancer surgeon in a few weeks, I'm a gonna whine about it, if it doesn't burn off. If anybody knows, are those skin discolorations part of my Inflammatory BC or the Ductal BC that was just under it?? I was thinking it was from the IBC, and since it is so deadly, you can see why I'm all tore up about it. But I have told the rads doc, and I will just have to live with it, for when my rads are done, which I'm three months out now from surgery, I'll be done with all my treatments (chemo, surgery, rads), and I'm gonna declare myself well and not concern myself with future events. The future can stay in the future, thank you very much, and the past in the past. Bless all of you, some of you have been thru the mill. GG
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New protocol is Navelbine the next 3 rounds of chemo, with Herceptin, due to allergy to Taxotere. Then rads. Herceptin will continue for a year. Followed by Tamoxifen, too. I'm really sorry to hear about the complications that some of you with MX or BMX have had. Lump seemed like enough surgery to me. You ladies are so strong!!!!!
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Nanyjill, I've been thinking about you and am now glad to here you are finding an alternative drug.
We are blessed to have some choices.
Good luck with the new treatment.
Sending good thoughts and prayers...Joan
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Thanks, Joan. Good luck to all with next phases of treatment.
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NancyJill,
I love your photo! Looks great. You are amazing - keep smiling.Joan
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Still feeling good on new treatment, just tired occasionally. Will be done with that by Christmas, then rads. Herceptin the rest of the year, and Tamox. Hair is a short stubbly mess-not growing back yet despite stopping Taxotere/Cytoxan. Scars getting better, slowly. How are all the rest of your surgeries healing?
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Hi NancyJill,
Been thinking about you this week. Glad you checked in. I hope all the August ladies will check in before the end of the year! We need a reunion - most of us will be six months out of dx or surgery by february.
Glad to hear you are doing well and that you'll be moving forward to rads soon.
I had my FIRST rad appointment today - except for taking Arimidex, I haven't had any other treatment yet. Lots of long-spread out- appointments - but am now on my way.
I dreaded it (the simulation) and now it's over. I worked really hard to find the right drugs and natural remedies to quiet my allergies and nerves. The best part today was being able to wear my iPod shuffle during the CT scan and marking session. The tattoos were nothing.
They should have my computer program ready in about a week for me to start.
So, NancyJill, did you continue to work? I hope you are slowly getting your life back.
Hugs and prayers for you !Joan
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Joan, how is rads? I am not working outside the home. Or in it, much! Just trying to get extra rest and avoid the viruses going around. The ladies doing marathons during this impress me a lot. Glad to know the CT and marking is nothing much. Six more Navelbine/Herceptin combo treatments to go. Looking forward to seeing my sister and kids over Thanksgiving. I will get take-out, in part, maybe Whole Foods or Safeway, for the big meal. I can roast a turkey breast, no prob! Are you working through all of this?
August surgery group--I bet a lot of you are doing better--check in so we can share in your accomplishments!
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Hi Nancyjill,
I got my appointment today - next Tuesday 11/22 for the run-through and start on Wednesday 11/23. Off for TG tday; then back on Friday 11/25 (my BD).
I have been working since one week post lumpectomy. I have a flexible easy job and lots of saved up time off if I need it. I feel fine - no chemo, fast recovery. I have to keep reminding myself that I am dealing with BC....I think rads will get me back to reality. I keep thinking about how careful we try to be avoiding toxins and radiation. I asked my R.O. about shielding other parts of the body (thyroid, teeth) and she said "there's nothing you could use that would shield the dose we use".
BC is so hard on women.
We are going to my daughter's in CT where I will see 3 of my 5 kids and 5 of 7 grandkids...we are ordering a cooked turkey from Whole Foods with gravy and stuffing. We're splitting up the rest. I am looking forward to seeing everyone. Glad to hear you will have family around....It is my favorite holiday.
Hope you are holding up through your chemo.
More soon.....
Joan0 -
Hi Girls checking in. Recoved well from my mastectomy and just had my 2nd recon surgery on Friday Nov 11th. It went well and back at work today. I am very tired but have to just push through it. Since I have been here last I met a nice man who is retired and now devotes his life to doing outreach work and we have been seeing each other for about 5 weeks. I'm very cautious but its nice to feel I can trust a man again. He is 47 so we are close to the same age (I am learning). I just caught up with everyones posts. One day at a Time!!! Everyone of you gives me strength to get through each day!!!
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OH and ladies Physical Therapy was a godsend. Cording is 90% resolved and I have full range of motion. The only place I have any cording left is directly under the arm. What a difference 6 weeks of PT made!!!!
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Hi everyone. I also recovered very well from my BMX. I was back to work, gym, and yoga. Was getting used to all my stuffed bras and fluffies. Glad to hear that everyone so far is doing well with their treatments.
Doxibell- So happy to hear that you are seeing someone as well. Hope he treats you like a goddess!! I just started my recon surgery. What type are you having? I went in today and had my tissue expanders placed. Feels like I did 100 push ups, 100 chest presses, and rows. I am only taking tramacet, but now wishing I had asked for something a bit stronger. Might be a long night.
Not looking forward to another recovery from surgery, my 4th in less than a year, but keeping the end results in mind, and taking it one day at a time.
Hope all of you have a Wonderful Thanksgiving next week ( up here it was in October). I know I am more mindful and thankful for the small things since my diagnosis.0 -
Hi Ladies,
I had my TE exchange yesterday and am now the proud owner of two new 500 cc cohesive gel sweater muffins. They are MUCH lighter than the TEs, but the PS did a lot of pocket work, because at the time of the BMX, he just kind of threw the expanders at my chest to see where they'd land. I'm very sore, much more than I expected, and much bigger than I expected, but still not as big as the cancer-y boobs I had chopped off! I'm taped up with what looks to me to be duct tape, and again the PS didnt give me a surgical bra--are they too expensive or what? So I asked if I could wear one and got the OK. I'm not having arm pit tits again! Bobeena, this was my 5th surgery since March. I'm tired.
Hope you are all doing well on your journeys!0 -
Hey all!
Dixie...yay on the beau! That's just terrific. You certainly deserve some good to come your way!
Eema...I'm jealous! I'm waiting for my squishies...Dec 19th! CANNOT WAIT!!! I hate these hard TEs. Congrats on the exchange being done. SO happy for you!
Bobeena...I got my TEs at the BMX, so I have no idea how much of the recovery was the TEs. I do know that they would feel pretty tight at the fills, but just for a day or so. Mostly, I just hate the way they are hard and don't move...but all to keep my eyes on the prize of the implants in the end. Just another month or so for me! You'll get there soon too.
Joan...your turkey day sounds fantastic. Hang in there through rads!
Not much new here...impatiently waiting for my exchange surgery.
No cording though. Just went this past week to meet the new local doc where I'll do my Herceptin infusions for this year. It was a tough day thinking that it's only been about 8 months and it already seems like an eternity that I've been fighting this and now I have a YEAR ahead. Also, at Dana Farber I was on a breast cancer floor...almost exclusively women...all ages. Here, I was the youngest by like 40 years. ugh. But I did find a fantastic chocolate shop right nearby...it may be my 3 week ritual. Love to all!
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I just read several posts of some of you who have had your exchange surgery after an Aug mastectomy. I am so happy for each of you.
I was originally told my exchange would be in Nov. Now I'm being told next year. The only complicatios I've had is severe pain (all along). I didn't have chemo or rad. I want to be a full "C", that has not changed. I've had 10 fills bringing me to my current 575cc's. My dr had my goal listed at 500cc's on my fill card, which includes the 100 overfill. When I got to that point I knew something was up, I was too small. The problem is with my dr, I don't see him at all from the BM to the next consult for the exchange surgery. That is scheduled for Dec. 5th. I did see him last week as I requested an emergency appt for the pain. He was really irritated and pretty much didn't believe me about the pain. Or at least he made me feel that way. I also asked about a surgery date, size came up he said I'd be a small "B". I said no I want to be a "C". He said well then surgery won't be until next year since you want to go larger. My husband jumped in and said" NO" she has not changed her mind she always said a full "C"". Because in my real life I tittered between a B & a C and that was tough to buy bras for. Anyway I am really upset, and in pain. I want to change surgeons but there are several issues, first off if I speak to anyone in this area, he is the Dr to go to, he is highly recommened. Second, I did go on another consult this week and he said its very uncomfortable to switch dr's and he felt I should stay where I am. I'm giving my dr one more chance at the Dec appt, if he is at all rude I'll have to fine another dr.
Anyway, I want to ask a couple questions... How many CC's did you get in your real implant, what size did that equal for you? I am 5'6" 120 lbs. my ribs are 32 although I wear a 36 inch bra. I did get some advice from whppitmom. I'm thinking either 550 or 600cc's, and either the allergan 20 or 45's. I want to look natural, some cleavage but no shelf at the top of the foob!
As of now, I have to get 5 more 25cc fills. at intervals of at least 2 weeks in between. And then I have to wait 4 weeks for the muscle to fully stretch. Surgery will not be until the end of Feb. The thought of that is pure turture.
Thanks for reading my story. I'm so glad this group exists.
Dina
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Hi, Dina. I'm so sorry that you're going through that. I think I have 540 ccs....and I did that in like 2 fills after the initial fill at my BMX. I never had any pain..a little tightness for a day or so...and kind of uncomfortable, but not pain. I just got measured for a bra at Vicky's Secret and they said 38D. I'm 5' 10" and like 160 lbs. I'm kind of in between C & D. I think it's hard to get an exact cup size before...you could still be in between after the surgery I mean. BUT..
My plastic surgeon was moving from one hospital to another. I had trouble getting an appt for my surgery. So finally, I called my breast surgeon (who did the first half of my mastectomy) and said I need a referral for another surgeon since I can't get an appt with my plastic surgeon. They set me up with someone else...and then lo and behold my plastic surgeon called me himself an hour later and set aside a surgery date for me.
If you're not happy with this guy, I would totally get a recommendation for someone else. They don't need to hear all about WHY you want someone else (docs do tend to protect each other)...I would just say I'd just rather have another surgeon. Oh, and I think cleavage is like really hard to get with the implants, but maybe I'm wrong. I don't know...these TEs are pretty darn big on me, but I've always had a space between my boobs. I can't imagine how big they'd have to be to get cleavage! Scary!!
Good luck. i'm sorry this has been so tough.
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It is so good to hear from the August group.
Profbee, you have always been an inspiration -- telling like it is but getting through with a vision. What a long road for you, it seems.
I am glad to hear so many of you are at the recon point in recovery. What makes me sad is that, once again, women are going through so darned much to get through this. I hope and pray that on the other side of this step will be healing and peace for each of you.
I have had an "easy" road, but rads are ahead. I think I'll do well. Classes end Dec. 16th and after that work is optional until late January - I can use my saved time. Even though my surgery was minimal, the emotional drain is always there. I had a kind of "let's do this" high at first...but now I am sometimes overwhelmed by the long term follow-up and wait-and-see worry.
You are my heroines...you have gone through bmx, chemo, rads, recon...and you are still strong and determined.
Hugs and prayers for each of you.
Joan0 -
To all the August ladies,
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Hi all, thought I'd drop by, especially after reading about all the reconstruction terrors! I decided I didn't want to go back and forth to the hospital, rather I wanted this whole cancer treatment saga over as quickly as possible, so I nixed the reconstruct and just reflect on my rumpled shark bite. It's not too bad, but these dang dog ears, especially the one under my arm, look strange...but I know whenever I lose weight, they will surely get less noticeable. Still, for a while I did wish I had done reconstruct so the surgeon could fix any irregularities, plus I read one way they do it is to use some tummy bulge to make them, and so I could also have definitely used a tummy tuck!
The scar itself is becoming invisible! I feel some tightness at the armpit, they took some nodes out there, so I keep massaging to loosen it. Actually, when I wear low-cut tops, enough "flab" (I guess) was left up at the top that you cannot tell a boob is gone for sure (or as husband says, a man on a galloping horse wouldn't notice), so I can wear a neclace and it looks fine in the mild "cleavage" of sorts I still have.
Of course, it IS flat over there, so I suppose for special public appearances, I might get out some falsies. Smile. And I have posted in another forum about tattooing the thing, I've seen some that make it look almost like a breast is there, they do it thru faux dimensions somehow, what is it called... trompe d'oiele (sp)? I love the morning glory vine, and I just might do it in a couple years, which really makes no sense becuz I rejected reconstruct, and so what do I do? I want to let someone needle in endless ink to make it look like something it isn't. Sigh. Oh, well, at least for now I'm free of all treatments, and all the more reason why I so sympathize with you bravehearts for not only putting yourself back like you were, but especially IMPROVING it (the size). WOMEN RULE!!! GG
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Hello August Sisters,
Wow we have all come a long way since august. I think it is interesting the totally different paths we are on to same goal! I had BMX w/ TE Aug 16. Then fills until chemo. I am not sure exact amount but they are huge! My husband calls them "bolt-ons". I am 5'10" and want to be a nice "c". I will compare my numbers to profbee's later. I am on TAC chemo x6 every three weeks. It is really hard, I function one out of every three weeks. Last one Jan 3. Then the rads after that. PS said he will "over inflate" radiated side to make sure there is enough skin. And then deflate other side for good angle access!! Wow that will be a sight!. Then hopefully exchange surgery in spring. Sounds like everyone is overcoming different obstacles in this journey and will be able to look back at it sometime soon! Hope everyone enjoys the holidays a little more this year, I know I will!
Sara ♥♥♥
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Thanks, Joan. That's so nice of you to say. And I totally hear you--at the beginning it's one foot in front of the other, but then looking ahead feels like a LONG road. I just started my Tamoxifen yesterday and the thought of taking it for FIVE years...crazy. I had nutso thoughts about how then Jack will be ten..and even that (although it feels like such a long time) is still too young to lose your mom. Nuts, I KNOW. I know that I have a great prognosis, but those awful thoughts sometimes creep in.
Dogeyed, I've totally considered a BC tattoo--and I've never wanted a tattoo. It just feels funny that my only tattoo will be of something I didn't choose that should be there in the first place, nipples! ugh. I've thought of some little boxing gloves (hubby got me a charm of little boxing gloves for my charm bracelet as I finished chemo). We'll see. You may want to just go to one of those places that specializes in undergarments after mastectomies. I hear they can be really awesome. Someone on the boards said they are just going to go there and hang out b/c the ladies had all been through it themselves and were totally upbeat, supportive, and knowledgeable.
Sara, I think I'm filled to 540. I went to Vicky's Secret and she said I was between a B and a C. This is just with the TEs. I felt kind of weird about them..they're just so hard and don't move at all...so I went and got one pretty bra to make me feel better. I wore it like twice.
Exchange surgery is Dec 19th for me! I'll be able to send you pics and everything before you do yours! Love to all! So jealous that lots of people are putting up their trees tonight, but I think if we cut one down now it wouldn't make it to Christmas!
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