Exchange City

Cheri2 · October 2009

KEW- be aware- I did have to spend the night in the hospital. Some people reject alloderm as it is cadaver tissue. My doc knew I did NOT want to spend the night in the hospital (I had a really bad experience with another doc at another hospital) anyway- he came in my room at 7pm after a 11 am operation and said I was good to go home. If there would be an infection it would have happened by then. So, I am good. No issues at all. The more my TE's drop the better they feel- very realistic. It is odd to feel it and not really "feel" it because it does feel so real compared to those TE's. He used 2 sheets and if there is anything bad to say about it- is it looks more square than my normal boobs did!!! But hey I had breast fed 2 babies and they were long and thin! These are much better looking than that! Plus I have some funky fat stuff hanging under my arm pit- but I am pretty sure that is from the first doc's TE's- they had traveled under my arm- yuck!!!

Puppies and Kitties- oh please! I am not freaked out at all over it- it has benefitted me immensely. Come on! This is the least I have had to go through. There was a time I thought implants would be insane. Someone donating their tissue so I can look beautiful- how wonderful a gift! It would be the same if someone donated a heart- it is a wonderful gift to me- as I am sure the donating person wanted when they checked yes on their drivers license! I am glad to be a donor and would be appalled at people taking it so lightly!

whippetmom · October 2009

Cheri: Of course, I agree with you. Wendy and I were just reassuring Teresa - who felt squeamish about Alloderm. Believe me, I know WHAT it is and I love Alloderm. Alloderm is my friend. My bosom friend. I am thoroughly grateful to the donors and thankful that this product was developed in my lifetime. It does not bother me in the least. Hey....I investigated medical malpractice claims for twenty years. I was an investigator for the county coroner's office. I watched autopsies being performed. Nope, cadaver tissue does not freak me out in the least either. But for those who are a little squeamish, let them have a mantra....

Bigapple09 · October 2009

Just to clarify what appears to be a misinterpretation of what I wrote in regard to alloderm.

I don't take it lightly at all. I counsel people on organ donation all the time, and understand the points that bother people considering donation as well as those accepting donation.

Another woman had posted saying that the thought of alloderm did not give her the warm and fuzzies, a very real and human thought. My post was in response to her's acknowledging that while there is a part of the harvesting process that disturbs me I focus on the positive parts.

The alloderm in my breast comes from a cadaver, and that is reality, and when I think about it, it is both beautiful and disturbing, I know I have part of another person inside me, someone who is dead, who i never knew and never will know. I know that signing the donor card and the consent of the family is huge and completely unselfish.Donating organs post mortem is the most unselfish thing someone can do, it is a good deed that can never be re-paid to the donor.

Beyond the source of the tissue being from a decedent, there is till the risk or chance of the acellular matrix carrying viruses or cancer cells, just like with any other donated tissue or organs, while the risks are not known or ascertainable (and there are no known cases of transmission that have been reported and shared) they are there if only theoretical it is still something that doctors are required to discuss, and the consent form for the use of alloderm contains and affirmation of these risks and a waiver of liability.

Sometimes it is disturbing if I think about it long enough, but then I concentrate on the amazing parts, like how there are people who can be so kind and generous, like how if that person was not a donor, I would not have been able to have implant reconstruction and would have had a bigger surgery with a DIEP on one side and the implant on the non-rads side. Or that if I could not have reconstruction I'd likely have kept my breasts and kept living with the 80% of another breast cancer (based on genes and family history) and hoping that if it came back it was caught early and I'd survive. I know the donor gave me a gift.

The families of anyone so kind and generous would likely understand that humans are complex and that gratitude does not obviate the ability of the human mind to consider the dark side of donation.

I think it is great that no part of you gets freaked out, but many other people do (including me from time to time) and if thinking puppies and kittens gets someone through this horrible stage of our lives then so be it. People need to deal with their complex thoughts and feelings in constructive ways and focusing on the positive be it the kindness of others or distracting oneself with other warm and fuzzy thoughts, so be it. Its a hard road.

Estepp · October 2009

Hi Teresa!

I will tell you that Dr. Rast does use AlloDerm. It is far superior to any other tissue used for breast reconstruction. You might want to call your insurance company to see if they cover it. Mine ( BCBS) did NOT cover it. Dr. Rast used it with me.. as he does all his recon. patients. I did not have to pay a dime. He wrote the expense off, saying that NO woman who is a BC patient should have to pay for any part of her reconstruction. I was so amazed. I do not feel my AlloDerm at all. Not even on my rads side. There is a video... SOMEWHERE on this EC thread that Deb posted some time ago... it shows how they use AlloDerm in us. I will tell you now though,.. it is a SURGERY video.. and hard for some to watch. I found it amazing! I am so grateful to the soul who gave me his/her skin. I needed it DOUBLE as I had rads...

Deborah, maybe you could repost this video..... if you still have it....:)

Call anytime you wanna talk about any of this Teresa.. I am here for ya girl.. if only just to listen..:)

I will be seeing Dr. Rast this Friday... to talk about him removing some skin cancer while I have my exchange and am ASLEEP...:)..... so I will tell him all about you coming the NEXT Friday... If you will have me.. I will join you in the room while you meet and talk to Dr. Rast... let me know:) If not... I will just be there in the waiting area for support...:)

dani42 · October 2009

Hi Ladies. I also have alloderm and to be honest, had I known prior the the mastectomy (it went in with the tissue expanders) I probably would have been hesitant. I was completely ignorant to the fact that donations of this type existed and had no idea I was receiving it. I still can't say I know exactly what was donated or much about how it forms a sling.

whippetmom · October 2009

I do not know what has happened to my old Alloderm video. Here is one by LifeCell: Interestingly, this is a bilateral one step reconstruction without prior expansion. My sound is not working, so I am unable to verify that this is indeed reconstruction after mastectomy and not augmentation. I do believe though that Dr. Salzberg is one of the doctors who frequently performs one-steps with Alloderm after mastectomy.

WARNING: Very graphic

ALLODERM GRAFT PROCEDURE

http://www.lifecell.com/alloderm-regenerative-tissue-matrix/405/

Angel10 · October 2009

OK....well if I did not have hot flashes with my Tamoxifen before tonight (which I actually have...) I certainly do now after viewing this video! Reality is often well...reality! A very interesting video Deborah....how do you get access to all these medical programs? Is this purely from the world wide web, or does your previous job as a malpractice investigator help these searches? Truly amazing, and when you have the stomach for it, truly helpful, too!

Yes, a skin sparing, nipple sparing DBX on a BRAC1+ patient with Alloderm. Wish my implants looked so well!

Thanks Deborah!

God Bless each and every one of us!

kerkle · October 2009

Wow! I just watched that video. Thank you for it. It really makes you realize how amazing our PSs need to be. I went in with boobs and came out with little ones, so I never really stopped to think that without his intricate work and skill, I would have been totally flat. The work to get the mammary fold and the shape of a breast...so interesting. It is a real wake up call that what we went and are going through is a very big deal (not just the BC side of it) but the extra work to make us still feel feminine, sexy, appealing, good about ourselves and most important "normal".

Estepp · October 2009

Thank you Deborah....

Cheri2 · October 2009

Deb- thanks for posting that video!

Linda54 · October 2009

You girls are just CRAZY!!! funny

too much to read ... yikes

I helped Joyce (hood1980) post a picture of her uni reconstruction on the picture forum. She needs everyones input on what to do. Go take a look and help her out.

KEW · October 2009

Deborah--thank you for your note ((hugs))--thanks for the video, I'll have to watch it when I'm not at work, hehe....

Laura--my PS wrote off the Alloderm as well.

I have a friend whose grandchild is 8 months old and he is on the donor list for a new liver.

I'm very grateful for my Alloderm and think of it and the donor with gratitude and love.

My biggest regret is that I've been told I can no longer be a donor, has anyone else been told this?

Love you Sisters!

KarenW

Angel10 · October 2009

I know we can't give blood anymore....so I would not be surprised to hear of the donor issue...pooh!

God Bless

Bigapple09 · October 2009

Good News Ladies

BC survivors can be organ donor, however, on death, each prospective donor is evaluated. i asked the national procurement center a few years ago. You cannot donate if you have active cancer. At death each potential donor is evaluated. You can get more information at www.organdonor.gov years ago once you had cancer they would tell you that you could never donate organs or blood. The protocol has changed. I have been told by the blood center at Memorial Sloan Kettering that I can begin donating blood once I am two years post all treatment and surgeries. I understand that the red cross will accept donations 12 months post treatment. There are some cancers that bar you into perpetuity, but BC is not generally one of them I was very happy to find out that I could still have the chance to help someone, even if its just with a pint or two of blood.

I'm not morbid, I have just had to research this question for clients when the issue of organ donation and end of life wishes come up.

Wendy

Angel10 · October 2009

That is great news, Wendy! I was so disappointed to hear that I could not donate blood anymore, and have been a card carrying donor on death person for years! Your explanation is very helpful and encouraging. I will be sure to share it with other family and BC friends!

Thanks again!

God Bless!

cnemeth · October 2009

Well, I had no clue what Alloderm was until about 5 minutes ago. When I would read posts that mentioned it I imagined it as some type of surgical netting or fabric. Wow! My PS never mentioned it so I will have to ask him now.

Am going to check my drivers license right now and make sure that I still have the donor dot on it. I plan to be around for a long time but if it doesn't work out that way I want my body to help save other women's breasts!!!

Never cease to be thrilled and proud of the group of incredible women on this website!!!

Colleen

sftfemme65 · October 2009

Just to clarify, the actual thought of having alloderm doesn't really bother me at all, if its necessary. My concern is there is a risk with every reconstruction of rejection and infection with the implant....and of course there is that risk with donor tissue too. So does using alloderm increase the risk of complications? I would assume somewhere and at sometime it was looked at.

Laura, I would definitely want you to be in the room! I am looking forward to meeting this Dr. Its great you are going to combine both procedures....I wish I could have a tummy tuck with mine lol!

Teresa

Nedeza · October 2009

Thank you for addressing this matter about how far to go with the expansion. First of all I want to say kudos for all you ladies. I am so excited to have found this site and it has been very helpful...also helpful emotionally. Just reading your entries are inspiring! I had my mast. on my right breast on Aug. 25th with immediate expansion. My only post op treatment is Tamoxifin. I do not have to have chemo/rad. tx. This whole process has been an interesting journey.

I am on the last stretch...literally. I had my last expansion last week. My PS said to give it a week to see if I want another expansion and has given me an option to go a little "bigger". I have been contemplating. I think she said I am at 400-425cc right now??? I heard from other ladies that after the exchange the breast seems smaller than anticipated. I was a B-C cup prior. I would like to be a full C cup after this. My PS did say that she is hoping that I would get better expansion on the front (where the nipple used to be) as time goes by. Now I do not know if I should go for another expansion or not. I already feel very engorged as is.

Angel10---Thank you directing me to this Exchange City thread. Thank you for letting me know there is a light at the end of this journey!!!

God Bless,

NAE

Estepp · October 2009

LOL Teresa!! I am not sure how much more a risk AlloDerm is... good question for Dr. R.

JEAN... I am soooooooooooooooooooooooooooooooooo getting excited for you!! Please keep us informed... wahooooooooooooooooo for you dear sister! I miss you! I hope the best nips EVER for you!!!! Gods Love to you and MUCHO prayers from me... promise!!!!!!!!

Grandkids asleep.. finallyyyyyyyyyyyyyyyyyyyyyyyy....LOL LOL...

Estepp · October 2009

NAE.. WELCOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!! And you are right.. emotionally.. this thread... is amazing!!!!!!!!!!! As far as knowledge.... AGAIN.... Amazing!....... as far as Love for one another... AGAIN... AMAZING!!!!!!!!!!!!

WELCOME to the best little spot .... a spot we call........EC!

CoolBreeze · October 2009

Ladies,

I had second opinion consultation with a PS today. He was extremely smart - I liked him. Others have called him arrogant but I think it's because he dumbs nothing down. However, he was not very enouraging to me.

I have IDC, DCIS. LCIS in one breast. He seemed surprised that the surgeon had not mentioned taking both breast because of the LCIS. I don't want to remove what is, so far, a healthy breast though.

He said symmetry would be possible with both gone but noto very likely with only one due to my frame, etc. He told me I wouldn't get anything resembling what I have now in any event. (Ladies, not to brag, especially since it doesn't matter anymore, but I have great breasts, even at my age, and he noted that) He will do an expander, which is the only option available to me, and then when everything heals and is the final shape, do an implant on the other side to try to match.

I would get better results if I took them both but my feeling is why remove a healthy one? Then it comes back to LCIS. Why not?

If I did do both, I'd want skin/nipple sparing but he said in his experience surgeons don't really like to do that but to discuss it with my surgeon- but be aware maybe he hasn't done it before.

I have been dealing with this too long and I'm too tired. I can't go back and ask my surgeon more questions, then go back to the PS to follow up and get more info...it's been too long, I have an aggressive cancer that has been very close too the chest wall for some time. I have a young child still.

This is a HUGE problem in women's breast healthcare. I know some women go to breast centers and get a "team" who all consult and come up with a plan with the patient all at once. Many, many of us get different pieces of information from different doctors and have to go back and forth and piece some sort of answer together on our own with nothing.

My thinking now is just to have the mastectomy and reconstruction on the right breast. I can always remove the the other if I am getting very assymetrical results, right?

What do you all think?

Im so tired of this.

Surgery - tenatively - scheduled for October 20. Two months after DX.

CoolBreeze · October 2009