Dis Breast Cancer Survivors Part II -GAGWTA!

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I dont know much about it yet, as I havent read it all, but there is a petition that Lifetime TV has going to "urge Congress to stop 'drive-through' Mastectomies". Has anyone else know anything about this?
 
Merry, I too am glad you shared your disaster story. I knew you reversed it, I did not know why. I believe I would have acted just as you did in the same situation.

I guess I'll weigh in here. Dawn, I hope this is not too much information!!

Reconstruction is a very big step. You are smart to be seeking multiple opinions. I would recommend this even if the first one was satisfactory. As I said it is a very big step, docs have very different training. Some do mostly COSMETIC surgeries for most of their practices (especially the one that have been in practice for a long time). The docs do not receive nearly as high compensation from the insurance companies for reconstruction as they do from patients who are paying 100% for cosmetic procedures. I thought this was very enlightening when I heard it. Some docs really want to help women so they keep up with reconstruction surgery advances. This is the doc you want to find. You have to question the docs specifically as to how many reconstructions they do each year.

With FREE flaps, where the flap is completely removed and the blood supply has to be reestablished, there is a risk that the flap will either partially or fully die in any woman of any size or health situation. In this case you really need a doc who is good at microsurgery, many plastic surgeons are not.
In the hospital after a free tram. the nurses watch you very closely, especially in the first 24 hours. I remember them coming in to check mine every 30 minutes at first, touching and examining it very carefully, then gradually switching to hourly. They also kept the room blistering hot that first night to encourage the establishment of the blood supply. It was a horrible night. Thank goodness for drugs.

It was so hot I was sure I had a fever. The next am they made the temp normal and I was ok. They also got me out of the bed, and got me moving.

What I want to say is that the risk of flap failure is there regardless, extra weight contributes to it. I apparently was withing the range they consider safe although certainly I am at least 30 pounds overweight.

I asked about the lat flap as well, and the docs thought it was an option but not without an implant. I too did not like the idea of an implant, so I went with the free tram.

I work with a young lady (30ish) who had the lat flap without an implant. She is very thin though. She said it is basically flat. I'll ask her if she regrets it, I think she will say no.

It is essential to find a doc that does LOTS of the procedure you end up going with. It is an option to travel to get the right doc, many women do. I read alot on Laura's friend's website, facingourisk. rg. Many of the ladies who post there have gone to two docs in New Orleans who do DIEP flaps. I think these plastic surgeons specialize in breast reconstruction, so they have tons of experience and expertise. As close as I am to New Orleans, I considered it, even called there and talked to one of their nurses.

If I had not been able to find a doc here I liked here I believe I would have traveled. I was lucky to find one who trained extensively in the free tram and who has done and continues to do trams every month. I felt he was the right one. I will say the New Orleans docs charge ALOT, and they were not in network for me. I have to admit I was concerned about how much insurance would cover. Also, I received a very good recommendation for this doc from a nurse who works with all of these docs. She also solicited input from other nurses for me, the consensus was this doc was the one to go with.

My doc was thorough and caring, as I have posted. It was also affordable with my insurance, and I am very satisfied with the result. I also knew with where the scars from my mastectomy were placed, I would always have visible scars. This was not a concern for me at my age. My intention was to achieve symmetry without using a heavy prothesis in our hot climate. I also saw a lot of value in reducing and raising my normal breast.

My reading about lat flaps without implants is that it might be difficult to achieve symmetry without a very drastic reduction on the normal side. I do think because the blood supply is not severed completely with a lat flap that the loss of the flap is less likely.

I am not surprised you are meeting resistance with the docs about a lat flap without an implant I think I asked about this too, but all 3 of the PS's I saw said I would need an impant. I was hopeful with the flab in my trunk area on my side and back, they could make a good sized one. I guess it is not easy to do that. I am sure it also depends on where the flab is located. Body types vary greatly.

What I like with the PS I went with is that he explained very specifically that a tram flap was a good choice for me due to the length of my trunk. He also said the lat flap WITH an implant would be a viable choice. He did not want to really influence me too much one way or the other (I liked that I had 2 viable options), but after I very directly asked him, he seemed to thing the free tram flap might yield a better result.

I will tell you all thre docs I saw examined my body at length. They appeared to be measuring things with their eyes. I am confused how your PS #2 did not even look at your body. Right before the actual surgery, my doc spent a very long time first eying my chest, focusing very intently, used a measuring device, and then marking it up very clearly as to where he would make incisions. It reminded me of a painter holding out his thumb and surveying a canvas. It seemed wierd but I thought I was seeing a master at work.

I know he did I a good job, but please realize that I really managed my expectations. I wanted the right size and shape, no permanent pain (there is a lot of abdominal pain for weeks afterward), be able to wear normal bras and clothes afterward. All of this I received. What I did not receive was a breast that would fool anyone as not haveing been through this process. However, I look at it as battle scars. I am not trying to fool anyone.

The best result: I feel comfortable in my own skin, and seldom even remember that the breast is not the original. Gosh I don't miss that prothesis.
But keep in mind the prothesis was huge, and after all I live in south Louisiana. It was misery having it. That time with the prothesis and being uneven was a great incentive to face the reconstruction and healing. And having a reduction covered by insurance was icing on the cake.

Wow this is too long.

Ask me anything further if I can help.
 
This is so interesting to me. My breast surgeon explained that he prefers to do the sentinel node biopsy prior to mastectomy when a patient wants immediate reconstruction regardless of what they choose, implants or flap.

His rationale is two-fold:

1) He would not want his patient to wake up expecting one thing to happen (having a new breast or breasts constructed), only to wake up and find that this has not happened because the sentinel node biopsy was positive and showed cancerous nodes,

Wow. This is so different than what happens here. My sentinal node was positive (thankfully I only had that and micro mets in one more) but they went ahead with the implant expander. In my support group there are at least ten women who had implant expanders BEFORE radiation and came out just fine. The only letdown to that is if you have or have radiation with an expander in (or you choose to like me :goodvibes ) they must wait three to six months AFTER the radiation is done to complete all the work...expander expansion, removal and implant. All the women had good results although a few DID have to undergo some extra procedures. We SHOW each other the results and their breasts are beautiful. ALSO...one of the boston stations had a series (I can get the link) where a 30 something reporter had stage 2 breast cancer and she had the flap surgery immediately after her mastectomy AND then had radiation after chemo and did great...so I know its done. The station posts her eight part series on line and it was really good.

and (less important but still relevant),

2) Immediate reconstruction involves two surgeons who have to coordinate their schedules in order to make the surgery possible, and if the sentinel node shows cancerous nodes, the surgery cannot be completed, and the plastic surgeon cannot do his/her job and has to leave the OR, as positive nodes will normally require radiation treatment, which will negatively affect newly constructed breasts (and supposedly cause more "damage" to implants).

I guess your surgeon was confident that your nodes would be clear so he/she did the sentinel node during your mastectomy? Or is it that you waited until after the mastectomy to reconstruct (forgive me, I do not recall)?

I told my doc that I, of course, do not want to go through any more surgeries than I absolutely have to and he completely understands where I am coming from. However, if I do decide to have immediate reconstruction, he is pretty insistent that I have the biopsy done first (and frankly, it makes sense to me, but that's me).

I am interested in flap surgery, specifically latissimus (back) WITHOUT an implant. Not many surgeons will do this as apparently the skin from the back is usually not sufficient enough to mold a "decent-sized" breast. My plus-sized frame may actually work in my favor in this situation as Plastic Surgeon #1 said he could make me a big B, possibly a small C-cup. Plastic Surgeon #2 didn't even examine me or get up from his chair and stated that due to my "obesity," my ONLY option is implants. He went as far to say that the back surgery "would not be worth it to me" because I would end up with small breasts that would "barely stick out from my chest wall." He also said that the skin transfer would not be possible and that more than likely "the skin would not survive, would turn black and die." Nice.

PS #2 also had the audacity to tell me that the chances of me losing weight at this point in my life are slim to none as I have been carrying extra weight for almost 20 years and that "only surgery, a lap-band or gastric bypass, would work for me." Umm...WHAT? I am not 500 pounds, 400 pounds, or even 300 pounds. And even if I was, how DARE you say something like that?

As it turns out, according to my Breast Doc, PS #2 has LITTLE to NO experience with flaps and prefers implants because they are easier for HIM to do (and this man is the HEAD of Plastic Surgery at a major hospital). Breast Doc said he would have never suggested him if he had known about my desire to avoid implants. All I can say is that this has been quite a learning experience. Plastic Surgeon #1 isn't looking so bad after all, LOL.

I see PS #3 next Weds. and by then I should know who to go with and/or what to do.

Deep breaths, in and out....LOL:rolleyes:


I was not a candidate for the tram flap due to c-section scar and an abdominal surgery. And I just don't get the weight issue at all that one doctor mentions as a deal breaker and the other says he can do it. It sounds like personal bias to me, or would'nt it be impossible for all of them? I truly believe that some doctors just avoid patients that they think might not have an easy surgery or result because of their own shortcomings. This is just my opinion. My plastic surgeon was concerned with my choice to have radiation but told me if I was patient and followed up religiously he would see me though it. He never promised perfection but his work is amazing and at this point, even if my "two girls" don't exactly match I'll be happy with being able to wear a normal bra and show a little cleavage again!:goodvibes
 
Here is the amazing series of reports by a reporter at WCVB in boston. SHE had the tram flap during her mastectomy and then had radiation. It was an INSPIRATIONAL and very honest series of her ups and downs. What a lovely lady.

http://www.thebostonchannel.com/health/index.html

(Look down to the right and you'll see the link for her reports. Let me know what you think!)
 

GAGWTA Ladies! :grouphug:

Thanks for the responses. As far as I'm concerned, no post can ever be too long. I am happy to hear all that you have to say. And I will check out the series.

Yesterday was (obviously) a rough day. I am so-so today, kind of weepy and down. The rain doesn't help. I realize that my surgery will more than likely take place within the next 3 weeks and I am scared. I am afraid of all of it, from the general anesthesia on. I haven't been put under since I am 7 years old. Ever procedure I have had since has been under local anesthesia. It's all weighing heavily on me, all of it.

TRAM flap is not possible for me. PS # 1 explained that I would be very susceptible to a hernia and other complications. This is where my weight does play a role. As I have said earlier, I am currently a D-cup. I am not happy being a D-cup. When I was at my "ideal weight," I was a B-cup, and I was perfectly happy. My body has changed QUITE a bit since then. The D-cups I have ARE mainly fat tissue. In terms of proportion, yes, B-cups on this frame may end up looking odd, but I don't care. B-cups are better than no cups, at least that's how I'm feeling right now (no offense to those who have chosen not to have reconstruction).

The LAT flap is ok in my eyes, even if the PS can "only" make me a B-cup. PS #1 was confident that he could make me a larger B or maybe even a small C. Sounds super. So now let's see what PS # 3 has to say.

I was browsing several sites last night and FINALLY came upon the "proper name" for the surgery I am requesting. It DOES have a name and DOES exist. It is simply called, EXTENDED Latissimus Dorsal Flap Surgery." You would think this was a big secret considering how long it took me to find this info.

Here's what one site said, "This procedure is especially useful for MODERATELY OBESE patients who are not good candidates for other flap techniques." Basically, extra fat is taken from the back to make slightly larger breasts than one would usually end up with during SIMPLE Latissimus flap surgery without an implant. So, apparently it CAN be done. It HAS been done. And at least PS #1 is willing to do it. He showed me proof. I saw pictures of his work, and the breasts he showed me looked pretty darn good. They were natural looking, with a very slight droop. They were beauties.

I just don't want implants. I am ABSOLUTELY certain about this (and believe me, it is the ONLY thing I am certain of right now).

I meet with the genetic counselor next week. I haven't mentioned to you all that I am part Ashkenazy (father's side) and that my paternal grandmother and paternal aunt died from ovarian and uterine cancers. On the surface, this does not fare well for me.

This may very well be a "family affair," or maybe it isn't at all. However, based on this history, the fact that I developed BC at age 40, that I was in the small 20% of women who develop cancer after calcifications were found, and the fact that I developed two types of BC in one breast over the last 5 years (my mammo done at 35 years old was clean as a whistle, not even a single calcification), I think it truly makes sense for me to have a bilateral mastectomy.

I honestly never thought a unilateral was for me. I appreciate and understand what my Breast Doc and PS #1 have said about not removing a "healthy breast," but the truth is, there ARE calcifications in my other breast--they just aren't acting up...YET. And, if it should turn out that I DO have a BRCA gene, my chances of getting cancer in the other breast are as high as 40%.

I'm not a risk taker.

So, I am pretty sure what it is I need to do, and all I hope for is a PS who will be able to help me achieve what I want. Yes, implants might sound like the simplest solution for me, but they are just not for ME.

Thanks for listening and being here for me.
 
In terms of proportion, yes, B-cups on this frame may end up looking odd, but I don't care. B-cups are better than no cups, at least that's how I'm feeling right now (no offense to those who have chosen not to have reconstruction).

No offense taken. I understand that many women feel a need for reconstruction. If that's what makes you feel good, I say go for it! I wouldn't mind having a breast again if someone could wave a wand. It's just not worth what I'd have to go through to get it that bothers me. And I am a very plus-sized or Pooh-shaped woman. I need to lose weight and I know it. My reduced breast ended up being an A when it was supposed to be a B or C. :rolleyes: My prosthesis is actually a bit larger than my real breast and they both are too small for my tummy giving me a sort of pregnant look. But I'm not sorry I had the reduction. It's all good.
 
Dawn- My friend Sue Friedman who runs the website I gave you is an Ashkenazi Jew as well. I have other friends who tested positive who have the same heritage, unfortunately it is a risk factor on top of others. Anyway, Sue is a really wonderful person, if you get to talk to her tell her Laura from SIS sent you!

It sounds like you know what you need to do... :hug:
 
GAGWTA Ladies! :grouphug:

Thanks for the responses. As far as I'm concerned, no post can ever be too long. I am happy to hear all that you have to say. And I will check out the series.

Yesterday was (obviously) a rough day. I am so-so today, kind of weepy and down. The rain doesn't help. I realize that my surgery will more than likely take place within the next 3 weeks and I am scared. I am afraid of all of it, from the general anesthesia on. I haven't been put under since I am 7 years old. Ever procedure I have had since has been under local anesthesia. It's all weighing heavily on me, all of it.

TRAM flap is not possible for me. PS # 1 explained that I would be very susceptible to a hernia and other complications. This is where my weight does play a role. As I have said earlier, I am currently a D-cup. I am not happy being a D-cup. When I was at my "ideal weight," I was a B-cup, and I was perfectly happy. My body has changed QUITE a bit since then. The D-cups I have ARE mainly fat tissue. In terms of proportion, yes, B-cups on this frame may end up looking odd, but I don't care. B-cups are better than no cups, at least that's how I'm feeling right now (no offense to those who have chosen not to have reconstruction).

The LAT flap is ok in my eyes, even if the PS can "only" make me a B-cup. PS #1 was confident that he could make me a larger B or maybe even a small C. Sounds super. So now let's see what PS # 3 has to say.

I was browsing several sites last night and FINALLY came upon the "proper name" for the surgery I am requesting. It DOES have a name and DOES exist. It is simply called, EXTENDED Latissimus Dorsal Flap Surgery." You would think this was a big secret considering how long it took me to find this info.

Here's what one site said, "This procedure is especially useful for MODERATELY OBESE patients who are not good candidates for other flap techniques." Basically, extra fat is taken from the back to make slightly larger breasts than one would usually end up with during SIMPLE Latissimus flap surgery without an implant. So, apparently it CAN be done. It HAS been done. And at least PS #1 is willing to do it. He showed me proof. I saw pictures of his work, and the breasts he showed me looked pretty darn good. They were natural looking, with a very slight droop. They were beauties.

I just don't want implants. I am ABSOLUTELY certain about this (and believe me, it is the ONLY thing I am certain of right now).

I meet with the genetic counselor next week. I haven't mentioned to you all that I am part Ashkenazy (father's side) and that my paternal grandmother and paternal aunt died from ovarian and uterine cancers. On the surface, this does not fare well for me.

This may very well be a "family affair," or maybe it isn't at all. However, based on this history, the fact that I developed BC at age 40, that I was in the small 20% of women who develop cancer after calcifications were found, and the fact that I developed two types of BC in one breast over the last 5 years (my mammo done at 35 years old was clean as a whistle, not even a single calcification), I think it truly makes sense for me to have a bilateral mastectomy.

I honestly never thought a unilateral was for me. I appreciate and understand what my Breast Doc and PS #1 have said about not removing a "healthy breast," but the truth is, there ARE calcifications in my other breast--they just aren't acting up...YET. And, if it should turn out that I DO have a BRCA gene, my chances of getting cancer in the other breast are as high as 40%.

I'm not a risk taker.

So, I am pretty sure what it is I need to do, and all I hope for is a PS who will be able to help me achieve what I want. Yes, implants might sound like the simplest solution for me, but they are just not for ME.

Thanks for listening and being here for me.

We will ALWAYS be here to listen to you. You are going through a tough time right now and I was there three months ago. You are in my thoughts and it will get worked out.:grouphug: :grouphug:
 
See, it's coming together, Dawn. You sound good. :hug:

We will ALWAYS be here to listen to you. You are going through a tough time right now and I was there three months ago. You are in my thoughts and it will get worked out.

Reading this brought tears to my eyes.

Thanks ladies.:grouphug:
 
:thumbsup2 :grouphug: DeeSeeSW

FYI, I had my fourth chemo on Thursday and KNOCK ON WOOD, but this one's going much, MUCH better. I am having some bone pain but not too much stomach trouble. I actually had a nice light meal! TWO MORE TO GO!
And my mom had her breast MRI (both she and my sister did) and her results were NORMAL. Praise the lord! Should hear about my sisters in a few days.
 
LF - Yeah! good news for DM & DS!:dance3:

Dee - gotta do what's right for you - not what others think you should do. Stay Strong!

as for me - still in pain - on different drugs. funny how the 'strong' ones don't even make me loopy, nor stop the pain. I saw my original surgeon on 2/29 = he thinks the intercostabrachial (huh?) nerve is the culprit. So I asked about the pain in the scar, no clue - but! willing to blame radiation. I must have whine enough that I'm already on the docks to get in the Pain Clinic -they called within a week - and normally this takes upwards of a month. I see them on the 19th, possibly for a nerve block. I doubt it will work, cortisone did not work. I don't post most, cus it hurts the chest, arm, elbow. :sad1: Wah wah wah - so tired of talking about this!:rolleyes:

so I lurk - GAGWTA! ladies - Stay Stong!:cutie:
 
Sorry to hear you are still in pain, beadylady.

I'll keep my fingers crossed that the nerve block helps. Do give it some time, my sister has chronic nerve pain from a congenital back condition that affects back, hip and legs. She goes in for a series of epidural nerve blocks every so often. It is usually the third in the series that seems to help. She has a great pain doctor, unfortunately he is down in New Orleans so just getting there is an ordeal.
 
Fantastic news, lookingforward! So happy for all of you.
I don't dare ask more about the side effects of chemo--I can only handle so much, so one step at a time.
Thanks, BeadyLady, and I hope you are feeling better soon!


Dawn:love:
 
Dawn- My friend Sue Friedman who runs the website I gave you is an Ashkenazi Jew as well. I have other friends who tested positive who have the same heritage, unfortunately it is a risk factor on top of others. Anyway, Sue is a really wonderful person, if you get to talk to her tell her Laura from SIS sent you!

It sounds like you know what you need to do... :hug:
Dawn, I know you have a lot on your mind and on your plate, but I can also highly recommend facingourrisk.org.

I was a lurker there for months when I was trying to decide about reconstruction. There were a number of ladies there that had the gene.
There were many who had prophalactic mastectomies as well (one or both if they had the gene).

It seemed to be a very supportive group. I was very impressed with the level of knowledge as well. I know you don't have much time but if you post questions there maybe you can receive some helpful input.

We are rooting for you. I hope the rain stopped and that you feel better.
When is your appointment with PS #3?

BTW, I remember reading about the lat flap you are talking about with no implant in one of the books I borrowed from my cancer services lending library.

I got the impression that not many doctors have experience with it. It can be done though, as I said, my coworker had it and she actually is thin. I think she insisted on no implant.

Some PS's like their work to have the best possible cosmetic outcome. To me this needs to be tempered by the patient's desires. I know my doc was absolutely ok with my request not to have "adjustments" to the flap once it healed. I just don't like to tempt the fates with more anesthesia than necessary. Also, he did a very good job and any adjustments perceived to be needed would have been minor.

Some ladies especially on that facingourrisk.org site had lots of adjustments including pretty extensive lipo. Although I could certainly do with a good bit of contouring, that was not in my game plan.

I am at that point in my life where less is more. But there are as many different approaches to reconstruction as there are women. I think there may be a lot of very svelt 40, 50 and 60 year old survivors out there. Hey, they are making the best of a bad situation. More power to them, but just not for me.

Hang in there, you are a survivor.
 
Dawn, I know you have a lot on your mind and on your plate, but I can also highly recommend facingourrisk.org.

I posted a question there a few hours ago--thanks!

We are rooting for you. I hope the rain stopped and that you feel better.
When is your appointment with PS #3?

Appt. with PS #3 is on Weds. I wish it was sooner!

I got the impression that not many doctors have experience with it. It can be done though, as I said, my coworker had it and she actually is thin. I think she insisted on no implant.

Not being thin, the risk I take is having very small breasts on a large frame. Might look odd, but it's a risk I'm willing to take.

Some PS's like their work to have the best possible cosmetic outcome. To me this needs to be tempered by the patient's desires. I know my doc was absolutely ok with my request to have to "adjustments" to the flap once it healed. I just don't like to tempt the fates with more anesthesia than necessary. Also, he did a very good job and any adjustments perceived to be needed would have been minor.

I know I can always have the small implants put in later if I feel the breasts are too small, but I really want to avoid that.

Hang in there, you are a survivor.

Thanks!:hug:
 
I'm down and out with the flu. :sick: Last night was the worst. Made runs to the bathroom every hour all night long. Whew. Today I'm better, but still not myself. I can keep the temp at bay, but when meds wear off it comes back with a splitting headache.

I've read everything and I'm thinking of all of you. GAGWTA!
 
I hope you feel better soon, Merry. That sounds like the full blown flu.
REst, rest, rest.
 
DH and I took a day off today and are bringing our DD17 for a campus visit at Tulane.

Tulane appears to still be her top choice. We have not gotten the full financial aid package, they are apparently working on that for everyone now. That will determine the final choice, since so far her merit scholarship is only a partial one at 20 grand.

I have lots of reservations but at least I know she will be required to live in the dorm for two years, and is not allowed a car for the first one.

Here at LSU, no such requirements and most of the dorms are so bad, she won't even consider dorm living. All she talks of is sharing an apartment or condo with a girl friend.

We'll see how we muddle through all of this.

And I thought dealing with DD19 was difficult.

Ha!
 
Hi everyone,
Today I was going have my surgery today. But as I had posted before we had to was a little worried about my MRI results. Of course they where not great.They found a mass on the right side. So the plan had to change. We spent about a hour and a half talking to the DR. Yet she spent most of the time sounding like Charlie Browns teacher to me.Thank god my husband John was there and my primary was also there. They had called him about my MRI and he wanted to be there because he knew I would tune everyone out. So we are know looking at the 24th. They need to be able the have MRI machine and mamo machines.
 
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