Exchange City
Comments
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Debby, I was back to work in a week after exchange. Had drain removed 5 days out and did well. Still was sore for a while but nothing that inhibited driving, office work, etc.
Bonnie, I just had fat grafting done at the same time as nips. It was done on both my previously radiated side and my prophy side.
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Thanks for all of the encouragement, ladies! I'm seeing the PS again next Monday to talk about starting over again with capsulectomy, new TE, etc.
Tammy -- my situation in a nutshell from the beginning... Dx 9/08 followed by left mast with TE 10/08. Skin necrosis at site of incision and infection developed and was cleaned up with a minor surgery 11/08 followed by 3 weeks of Cipro for the infection. TE was left in place. Chemo from 12/08-03/09; TE was expanded during that time. Radiation doc insisted that exchange be done before rads, so TE was exchanged for implant 04/09. Rads were done from end of 04/09 to early 06/09. CC developed about that time and I took Vitamin E and another drug and massaged the implant daily for several months. It didn't help, so implant and surrounding scar tissue (capsulectomy) was done on Dec. 2 '09 and smaller implant was placed. CC developed again fairly soon and it has become more uncomfortable with time . If you have specific questions I might help with, please feel free to send me a PM.
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re stretchmarks - I found some organic cocoa butter at the health food store, no parabens and it has helped me.
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Oh Dawne-hope, what a great idea!! I'll go to the health food store, as even tho I'm not concerned, re: parabens, if there is an all natch out there, that's better.
Thank you! I got stretch marks on my side from a little pooch left at the base of my lat flap incision and I do love my cocoa butter...yes, I also love the cookie smell....:)
Bonnie, have you been to a PT? That helped me, with specific stretches during the TE phase of things to prevent CC. I am so sorry you've had such troubles with this. I had necrosis too. I actually needed a patch from my c section scar to cover the "pot hole" that developed with the TE in there. But it worked out great and perhaps, the PS may wish to wait a bit for exansion or to go very, very slowly. My TE was in for 9 full months and my rads was 8 years ago when I got bc again, so perhaps this was a factor. They can work wonders, and i will put you in my prayers for this time, no nonsense to flare up on you!
Take care all.
annie
p.s. My onc is crazy pushing me to get one of those bone drugs as they have been apparently proven to lower risk of recurrence. Now, I've had the ovaries out, to lower estrogen, was node negative, am on arimidex and had a mastectomy/recon as i could not have rads since I had it once. I also had 8 rounds of chemo. 2 1/2 years out, no recurrences.....seems to me, that's a pretty good chance of safety. I was midway on the oncotype scale. .I do NOT want the bone drug, as I am not liking everything I am reading on it. I have been told I have osteopenia, but I am tiny, and this could be due to small frame (radiologist stressed that to me). I take tons of calcium, vit D, do weight bearing exercise, and everything I have read about the bone drugs stresses more research needed before they get prescribed. I'd like to open this topic for discussion.....pros, cons, info, etc.
Thanks, gals. As of now, I'd need to see crumbling bones before I took that stuff, but perhaps there are some happy campers out there?
xo
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Bonnie, Bonnie, Bonnie: Fat grafting is done BECAUSE you have had prior radiation! This is the whole point of the links I have posted! Fat grafting softens the radiated tissue!!!! Come to California - you can find someone here to do it! I just talked to a woman in Toronto and she read the article and told her PS about it and her PS is willing to perform fat graft transfer to her radiated breast! It is being done! We can find someone in Oregon. Where are you in Oregon?
Deborah
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debbys....A capsulectomy is where the PS opens up the incision and removes the scar tissue capsule surrounding the TE....but this infers to me that you might have capsular contracture....has your PS mentioned this?
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Landy: I just sent you a private message.
Gals...I told her that she needs more volume with implants in order to get the appearance she wants. It simply takes more implant to make a "presence" on the chest wall. I said that my vote is for 550 ccs and even 600 ccs, if her PS can swing it. It is more important to look at dimensions and how the implant will fit ones frame, than it does to focus on cup size. Cup size, schmup size.....
Deborah
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I know there is a thread for this and I've posted there, but just wanted to see how many of you are aware of your vitamin D level. When I had pre-op blood work for my revision my new PS included a vit-D test and I failed badly. When I asked my onco/hema about this he acted like it is my fault because I "don't get outside enough" and reminded me to stay active. Good thing I happened to need a revision so that my PS could tell me that my vit-D is defficient cuz the onco would never have tested for it!
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A-storm - It makes me angry that he inferred it's your fault. Take D3, that's the important one for us BC ladies. I started taking it on my own. I see my onocologist in about a month and will ask her about the blood test. Just another reason we have to stay on top of things and be our own advocate. There can be some good out of the bad, eh? Glad you got tested too and are taking care of it!
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anniealso--i have osteopenia as well. Have had a few bone density tests all before this other mess this summer. I started on fosomax, now on boniva. I did quit the fosomax, glad I did, as I have seen a study on fosomax. You do not want to develop osteoporosis!! My lower vertebrae are fine, but a bit of thinning in my hip. Boniva is just once a month. There are others out there that are just an injection. What does he want you to take? Has he said? I, too am tiny, white and have all the other negatives perfect for osteoporosis. Your regimen is good, but chemo does affect bone. I've not had any bad side effects from the boniva and I've been on it for several years. My dr. (gyn, actually) said the benies far outweigh the risks. I'm 57, btw.
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Lilah--that's what the geneticist said, also. They hang onto the sample and whenever new findings come along, they'll test further. Still doesn't explain why there's so much BC on my mothers side. Weird.
bonniek--so sorry you're having to go through all this.
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thanks, happy mom! Like the screen name.
I just don't want to take them, period. There isn't enough research on them to suit me, but I am really glad that you've had a great experience!
He hasn't said what he wants me on, just that he does. He even said "I hope your bones come back bad so that I can prescribe it." I said nothing, just to myself said "really? prescribe what you want but I ain't taking it.".
I know Fosamax has some bad SEs, the jaw thing, et al, but I got the impression from my dr. that all of them carry these risks.
I don't want osteoporosis, no, but I also do not want to treat what I don't have.
Anyone else care to chime in? Am I crazy not to want to go there?
thanks again, happy mom! Stay well.
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Hey Bonnie, hurray for Whippet mom! I knew she'd steer you right!
My PS does fat grafting too, but his concern was that the radiology dept. said it would interfere with screenings as it shows up as suspicious.
Nonsense, i say. The PS knows where he put it, so I can't see the problem. I want to get some to even out my recon lady too and fix the ripples if I can.
xo
anne
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Anne - I had bmx so no more mammos for me, but I do get regular exams by ny general surgeon and onco. The GS said he would prefer that I not have fat grafting all over but if its in a certain area (e.g., for ripples or divot) he just needs to know. Onco didn't care one way or the other. PS #1 at first said it can cause problems (fat necrosis can look like calcification) and then later, after he went to a seminar wanted to do a lot of it on me, all over. PS #2 thinks it's great.
Dawn-Hope - I did some research on the NCCN site as well as bco and I think all gynos and oncos should be testing for this, especially with strong family history (my mom and 2 of her sis had bc) and family history of osteo (mom, again). I am BRCA 1 & 2 neg but I suspect there are other gene changes not yet identified (my mom's family had 3 out of 6 sisters with bc and 2 of the undiagnosed are still alive so could be hugher ratio).
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Gail -- it's funny how they are against stuff till they find out how to do it -- and then they are ALL for it.
And as for Vitamin D -- my onc believes it can reduce your chance of recurrence (based on studies of the cancer-fighting value of it). Mine has been low and I've been taking 2,000 iu's of D3 per day but am now upping that to like 4,000 because after 6 months at the lower level my Vitamin D level is still 22 (I think they want you above 32). Anyway, my ONC when she saw my latest numbers laughed and said "well I guess someone has not been enjoying the sunshine!" I was not offended because she was gentle and because she was not accusing me. "I'm a vampire" I said "I told you that when we met"
I hate the sun.Sorry Annie I don't know about those pills but I don't blame you one bit for wanting to find a natural solution. Have you checked out the threads on this site for those who use alternative remedies? I think it's under "Natural Girls" but not certain.
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If anyone's curious about the Vitamin D thread here is a link to one of them-
http://community.breastcancer.org/forum/83/topic/754317?page=1#idx_21
Since so many of us are taught to slather on the sun screen, and it's almost impossible to get all the D your body needs through diet alone, it is estimated that as much as 25% of the population is deficient. Word of caution, though, don't just start taking massive doses of D without having your levels checked first. If you're in the normal range, and start supplementing, you can cause serious organ damage. Your body will not excrete the excess but will actually store it which can cause numerous health risks such as
Health Risks of Overdosing on Vitamin DSome of the health risks of excessive intake of vitamin D include:Elevated levels of calcium in the blood, resulting from an increase in the absorption of calcium in the intestinal tractAbnormally large deposition of amounts of phosphate and calcium in soft tissue such as the lungs, heart and kidneys. These deposits can cause irreversible organ malfunction.Nausea, vomiting, poor appetite and loss of weightHigh blood pressure, heart rhythm irregularities and increased risk of heart diseaseKidney stones and renal failureExcessive production of urineAn overdose of Vitamin D in pregnant women can cause mental or physical retardation in babies.Other symptoms include:Bone pain and even bone lossMuscular weakness and fatigueNervousness and irritabilityExcessive thirst, dehydrationSevere headacheDeafnessItchy skin0 -
Thanks Kate, for that. I had heard too much D can also be harmful myself, as it is fat soluble and cannot be excreted easily. I do take a multi with 500 in it, drink OJ with 350 in it, and here and there thow in the odd calcium chew to get both up to 1000-1500. D often comes in about 2000.
I am going to get my levels checked when I got for the thyroid check in a week or so and thanks!
re: bone drugs; if I test as worse than last time, and need to address it I will. But I am not treating something I do not have yet. Osteopenia is NOT osteoporosis and does not always progress to it. In many cases, small boned women are simply labeled as osteopenia. It is disturbing to me that my doctor wants my bones to be bad just so he can stick me on this stuff to make me 150% safe from bc. I appreciate his concern, but to give someone a drug if it is not truly indicated yet, is not good medicine. It's got alot of negatives and all studies cite "more research needed before routinely prescribed"
So I will scan, hope that they get the bugs out as some of the studies are simply disturbing, and take it if I must. What, if anyone has an opinion or anyone's onc has an opinion are the best ones? I am not taking that infusion job, that's for sure. It might be convenient, but since I tend to get allergic reactions to stuff, it's not for me. Waaaaay too reminiscent of chemo also.
Has anyone had their onc prescribe it simply to treat bc? This is what mine wants to do.
to review: mid level oncotype, no HER2Neu, no nodes, "garden variety" cancer, invasive, but did not go anywhere, had chemo, mtxmy and recon, taking arimidex and had an oopharectomy to lower estrogen levels.
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Thanks Kate! My ONC told me to take more (so you shouldn't worry) and she continues to monitor my levels. She actually takes it herself! But geez that is scary what too much can do!
Annie, for what it's worth: my mom has Osteopenia and she is taking calcium supplements and exercising more; apparently increased and regular exercise strengthens bones.
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Love your new pic Lilah!
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Aw thanks Claire
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Lilah, yes the pic is great! Claire is that your daughter in your picture? Adorable.. What a little doll!
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Granddaughter - which is better lol - I can spoil her!
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That is one adorable little girl Claire.
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AStorm: thank you for your input - it was very helpful. I guess I just need to be patient for about 6 months or so, and it was very good advice to hold off on the nipples. I'm curious - are you getting a more voluptuous look with the silicone compared to the saline? Are they the same cc's and profile height? I would like to know in case these turn out to be less than what I expected. Thanks!
NYDeb
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Re: VitD3 must be taken with Vit K1 in order for it to be absorbed properly--My dr has me take 8000 iu per day and says we BC gals need to be in the high 60's to 80's and anything less in not good! I take Design For Health Vitamin D Synergy with Vit K1 for $12 120 tablets. It's a must!!! Okay, I have the flu, that's my rant.
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I haven't posted in awhile but just had to post and say I am finally DONE thanks to Judy giving me great tats. I will post pictures on the forum this weekend. THANK YOU JUDY - the secret circles are looking great after 2 days.
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Annie, not to beat the dead horse as it sounds like the bisphosphonates aren't for you at this time. But since you asked for a discussion, I'll add my experience.
I've been involved in a clinical trial for about 20 months on the clodronate arm to prevent metastasis. I'll stay on it until 36 months are complete. My onc said for me it was a "little extra insurance". Other than a little growly tummy (very mild) from time to time, I've had no issues. Since I am stage 3, I wanted the extra insurance. I even asked to stay on Herceptin after my year of it, "just to be sure". It's easy for me to be paranoid with the bc history. What I have NOT been doing is taking my calcium and Vit. D. After reading all the posts on here, I am walking in the kitchen and putting the bottle on my counter so I will remember to take them!! deekaay
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Oh Denise!! You can't tell yet. You'll have to wait atl least two weeks...but I miss you guys already!! Take care. JUDY
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I was told in the beginning that low Vit. D. levels play some role in BC... they are just not sure what yet. I get out in the sun all I can... and take supplements.
MY VIT. D. LEVELS were 4........yes 4........... yes 4......
I was put in the books here in KC as ..." another lady with BC that had terrifying Vit. D levels. " I was given 10,000IU by doc.... and not take 5000iu daily... and my levels are 57-67.... soooooo they say this is better...
ANNIE... girl... you need to post more.... I miss me some ANNIE !!!!!!!! XXXOOO
MOORETENNIS...... I am soooooooooooo glad that you are healing good and like it so far!
Judy... is an artist.
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I am so excited to soon be the beneficiary of Judy's artistry!
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