DIEP 2011

Ondagrow

Hi All...

I AM SCHEDULED TO HAVE DIEP FLAP ON AUGUST 17...  Left delayed...  Right immediate...

I am perplexed...  I am upset because they want to take sentinel nodes from my non-cancer side...  My MRI results from July 14, states no cancer...  I do not want them to put my Right Side in jeopardy for lymphedema...

I understand PRECAUTION...  I UNDERSTAND THAT ONCE YOU REMOVE THE BREAST THAT THEY CAN NO LONGER just do sentinel node removal...  However, if I get a reduction, my nodes can remain untouched...  I BELIEVE IF THERE WERE AN ISSUE, IT WOULD NOT BE AN OPTION... They would just tell me I HAVE TO do IT... PROCEDURE is not a good enough reason...  Why do the MRI...

 I FEEL IT IS OVERKILL...  I am not trying to be combative...                                                            

I need my right arm...  The nerves in my left arm are SHOT...  I am in school for PHD...  I do not want to chance it...  I am right handed...

Where are they going to take my blood pressure...IV...  I AM TIRED OF MAKING DECISIONS...  I THOUGHT I WAS CLOSE TO THE END...

I was not going to mention it...  I cannot deal with this alone...  Any experiences...  I totally understand WHY they want to do it...  However, uuuggghhh...  I research and talked to several doctors...  I thought I had a resolve.  After speaking to medical oncologist earlier today...  I just woke up livid... lol

I STILL DO NOT WANT TO RISK IT...

Has anyone who had non-cancerous breast remove ever challenged the sentinel node removal...

SORRY FOR RANTING...  I AM TIRED OF CANCER...  Today is not a good day....

SAMayoFL

Sohard, girl, you and I are destined to be here at the same time and place.  It is so strange because I swear I feel such a sisterhood with each of you.

I am going through the exact same argument with the breast surgeon!!!  I just had a flipping PET scan in April.  It was clean.  Why in the world would they want to do a SNB on my clear breast then?  Friday, when the doctor's office called and told me, I had the same reaction!!  WTF?!?!  I got so upset that the girl told me to talk to the doctor when I get there for my pre-op and maybe I can talk him out of it.  I am also in the same boat with you in that one side is delayed and one side is immediate.  So far, however, I don't have LE.  Under my right arm, the mastectomy side, my bra does give me kind of like a fullness under my arm, especially if I have had a really busy day.

Looking at your stats maybe the want to do the SNB because you had so many positive nodes?  I am trying to take a deep breath and say that maybe they want to do it with me because I had ILC, which tends to show up on the contralateral side, and I am BRCA+.  Let me know what your final decision is and I will do the same.  My big date is August 3.

Hugs to you.  Hopefully tomorrow will be a better day!

Susan

Ondagrow

 SAM

I would do it if the reason WAS I had a lot of nodes ON CANCER SIDE...

They are telling me to keep right breast and get a reduction... So I can have bigger breast,during diep...

 They told me removing my non-cancerous breast was overkill...  How can they say that in one breath... and then, uuuggghhh...  

MY MRI IS CLEAN... Got results FRiday... LOL

I see breast surgeon Thursday...  

THEY WANT ME TO DO IT BECAUSE IT IS PROCEDURE...

SAMayoFL

Dang ladies, I have got to get to my surgery date before I work myself to death.  This is worse than nesting before I had my children.  I have cleaned, scrubbed, bleached, filed, thrown out and shredded until I am exhausted.  There won't be any problems with me resting after surgery.  I will be thrilled to take a break for a while. 

Susan

sunflowerE152

sohard - when I asked my surgeon about a PMX along with reconstruction I was told the same thing as you.  I only had DIEP on one side, and I pray the other side stays clear.

IowaSue45

I never did tell you ladies that I thought my incision was going to be a lot lower than it is, even my husband said , didn't they tell you that your scar would be below your pants and its not its above all my pants. Not that I will be wearing any short shirts or anything like that, I an just a little disappointed with how high it is.

SAMayoFL

No way!!!  Is it below your belly button?

Susan
 

bdavis

sohardbnme... Sorry for the conflicts... do they explain why you should have the nodes out?? For me, I would not get the reduction just because they say so... I wouldn't want to recover twice from this... I say get for me, if I were in your position, I would get the BMX, and if they need more later, get a small implant or fat grafting... And I would get a clear answer on WHY they want more nodes.

Sue... sorry to hear about the scar. I too am expecting mine to be well below the belly button, not that I plan on wearing bikinis or anything, but if thats the plan, then I want it so... If I had been told it would be higher (like you are describing) I wouldn't cancel the surgery an do something else, I would still do it, but we want what we think we're supposed to get. Can they do anything to make it lower?? I am sure over time, the scars will fade. My lumpectomy scar from December is barely visible.

treesprite

sohard: You are not being combative . . . you deserve an explanation that makes sense to you! Keep asking until you feel satisfied.  

If there is significant statistical evidence for the protocol, they should be able to explain it clearly to you. Sometimes they expect us to just accept what we are told like good little patients. Hopefully you will get a satisfactory answer on Thursday. 

Sue: So good that you shared your experience . . . that will give others the heads up to get the incision location clarified. So much of all of this has to do with expectations .. . I can handle just about anything if I know ahead of time . . . .I hate bad surprises . . . they give me that sinking feeling in my stomach. I wasn't prepared for how ugly my belly scar is . . . it sounds like my scar is more the exception than the rule, but it took me awhile to adjust to my reality. I've been trying different remedies, but I have a feeling that it will take some time for my tummy scar to fade. Good thing I'm not 17 'cause it would sure ruin the "low rider jean with a belly button piercing" look! 

Susan . . . I nested like crazy and it felt SO good to get so much done!! I did enjoy the down time after!

Ondagrow

 Thanks all...

I am done researching... I talked to enough people... I got second oponions... I am clear on Why... My gut says NO... I am going pray on it...

Procedure is NOT A GOOD ENOUGH ANSWER FOR ME...

RetiredLibby

Sohard, I am sched for a BMX on 8/23 w/immed. Recon.... Left breast w/recurrent DCIS, right prophy. They will do a left SNB, but when I asked about a right SNB, the surgeon looked at me like I had two heads each spouting pig Latin and said, "No. There is no cancer on that side and we wouldn't want to risk lymphedma and nerve damage." (It wasn't like I WANTED one, I was just collecting info.). Maybe it is because my cancer is DCIS, but it doesn't seem to be "procedure" with my surgeon. Good luck working it out ... I hope you can get satisfactory answers and a good resolution!

alexanjb

My ab scar is lower than I expected and hardly noticeable to me.  My belly button has a dark scar ringed around it that I can only hope will lighten.  My noob....well it is still a mess.  The drs think the skin will heal over eventually but it is anyone's guess as to whether or not it will ever be softer than a baseball.  I wasn't expecting that and neither was my PS.  At my onc follow up my dr. said what happened????

HappyLibby, I do the same thing, collect information and I've have seen that look like I have two heads as well.  I asked if I should consider a prophy on the non cancer side and got that look.

SoHard, maybe if SNB is "procedure" on your non cancer side, they can explain procedure in what circumstances?  If it is just because they are doing surgery, well....not good enough.  If it is because you have high risk factors for the non cancer side well....it is certainly worth considering don't you think? 

IowaSue45

My ab scar is below my belly button but above where my pants sit. I would have still done the surgery if I had know this also, they had just made it sound like it would be below a bikini line or almost to pubic area and its not and I can  live with it. I heal really good and I'm sure it will fad. When I had blmx in just 3 months the incisions were barely noticeable. My new breasts incisions are already light pink and looking good.  I asked the ps if there was anything to make the scars lighter and she said no not really or we'd b giving it to you but she said it helps to put moisturizer on the incisions. So I have been using my after tan lotion which has aloe vera, tea tree oil, vit.A,C & E

RetiredLibby

In my initial appointment, my ps showed me where the incision would be -- underneath my pooch which has an overhang, at what he called the bikini line (as if I'll ever wear one of those again!)  I will be interested to see where it ends up.  I have plenty of pooch to move!

L

afield

HappyLibby - I noticed that in one of your posts you mentioned you'd be at Virginia Hosp Center.  That's great!  Don't know how much time you've gotten to spend there, but it is a wonderful facility and has so much that is brand spanking new.  I had both my kids there and loved the nurses to death.  I love my breast surgeon, but she is at Georgetown, along with my PS, so I was bummed to have to do my sugery there :-(  If you haven't found it yet, definitely check out the Teal Center, on the first floor of the women's wing.  I've been working with a massage therapist trained in oncology massage since before my first surgery in March and she has helped so much with fluid retention, lymph node drainage, scar work, and general unlocking of my poor muscles as they react to the various surgeries.  They have a whole cancer subgroup in the Teal Center, and also have the ability at that hospital to come and work with you in your room when you are in the hospital (something else that Georgetown hasn't quite gotten its mind around).  Anyhow, don't know how familiar you are with the immediate area, but if you want any recommendations on places to get food nearby or anything like that, feel free to PM me and I can try and be of help :-)

RetiredLibby

afield -- Thanks!  I'm quite fond of VHC (I call it Arlington Hospital, since I've lived in the area for decades).  I actually live about 6 blocks away (we'll probably walk there the morning of surgery).  I had my lumpectomy and re-excision there, too -- and went to Rio Grande/Uncle Julio's after the first one and Pietanza after the second!  I had my rads there, too -- walked over in the morning, got zapped, walked over to Glebe Road and caught the bus to work!

Good to know there is a fellow NoVa person here!  I have heard things about G'town -- not the quality of doctors, but quality of hospital care.  I have always been happy with VHC.  (My first experience there was in 1982!)  Thanks for the heads-up about the Teal Center ... I will check them out.  I got off easy the first time.  This time will be a little more complicated!  My PS has already said he will have me consult with a PT before surgery and will write a script for PT afterwards. 

I'll PM you my info!

Sherryc

sohardbnme-My PS is actually going to do my BMX.  I was under the impression that for my prophy side I would not have SNB but I am definalty going to ask at my next visit.

Also regarding that bikini line I am going to have him show me where he is going to cut because I am thin and I do intend to keep wearing bikini's

Thank you all for all the comments, I learn so much and now I have even more questions for my PS.  My BMX is not going to be for awhile because I have to gain weight, but I have gained 3 pounds so am making progress.

grdnslve

sohard & susan--i would be talking to my onc if i was you.  seems to me surgeons like to do surgery.  i know mine wanted to go back & whack out a bunch more of me after my mx, but i said no & my onc totally backed me up.   that said, if there is a good reason, fine.  but i would check with your onc first.  2nd opinion is always a good idea.

sue...my surgical line is actually lower than i understood it would be.  maybe it has to do with the skin they want to take & the individual way we are all shaped.  funny thing (well, to me) there is this tiny little spot on my new friend that i recognise as the closest thing to a stretch mark i ever got in pregnancy.  somehow it just makes it seem all the more mine.

NotAfraid

sohardbnme wrote:"THEY WANT ME TO DO IT BECAUSE IT IS PROCEDURE..."

That's not a reason to do anything.  Procedure changes all of the time and varies from hospital to hospital, doctor to doctor.  So, that's not even a valid argument as far as I'm concerned.  Question EVERYTHING and ask WHY (some doctors assume we are all too dumb to understand).

I had a sentinel node removed on the left side - which is the side that had the active cancer.  The right side only had a MX done with no node testing even thought that was the breast I first had cancer in 7 years ago.  My surgeon, who is a Breast Surgeon, not a general surgeon told me that there are two common misconceptions about having a sentinel node removed: a) you can't ever do BP or take blood from that side again and b) I had a chance of lymphodemia.  Neither are true.  I've had no problems or lymphodemia post surgery and I use my left arm for blood as often as my right.  From what she has told me, that is an old standard that no longer holds true (but even the nurses in the hospital post DIEP had a big sign up saying "Don't use the  left arm!).

And whyat's with Doctors and their "need" to make sure we have big boobs?  Really, it is easier to wear clothes with smaller breasts!   

goldlining

Sohard, my oncologist said the same as HappyLibby's surgeon: not necessary to take nodes for PMX. But I had DCIS, 0/2 nodes in that uni mx, and a clear mammogram on the contralateral. So based on mine and some other comments, it's not a universal blanket standard practice but maybe it's procedure when X, Y and Z factors are involved. If they would have the courtesy to say what those factors are, you wouldn't be dangling there hearing this "I'll take nodes because I say so" type of thing.

I will be consulting a new BS for the PMX that will be done during the DIEP, and I won't be expecting to have her suggest taking any nodes. I'd be less than keen on the idea. Like sherryc, I have a new question on my list for the BS thanks to your post!

I was even surprised to have nodes taken on my uni. He never mentioned he would do that. I asked prior to the lumpectomy and he said, essentially, "pshaw!!! nodes?!? Why would I take nodes? DCIS isn't even CANCER" so it never occurred to me to ask before the mastectomy. They were emphatic I was overreacting even wanting a mx rather than re-excision. Would they have taken nodes if it was re-excision? In my mind, a mx is just a really, really big re-excision. And stupid me, afterwards I'm all "I feel so sore and numb under my arm" and he's all "it's just the tightness of the incision stitching". I didn't know there were nodes taken until I got the path report several weeks later. So happy to be moving to a different hospital (just fearing the grass is always greener).

No DIEP-date yet, but still hoping my name is called when the September OR schedule comes out. Add me on the anxiously waiting roster :-)

daisy4ever

My DIEP scar is below my belly button, but above my bikini line. I would have liked it lower, but my hope is that it will fade over time....and it is part of my story, my life. I still feel so happy, overall, with the results from my bilateral DIEP. The scar is now just a part of me, and I still feel good about my body.



I do wonder if my new boobs should be a lot softer to the squeeze. The skin is soft, warm, and healing. My boobs are not, however, squishy to the squeeze. They are firm, maybe more like a baseball. I am only 4 weeks post-op. Will this change? I hope so! I do like how I look in my clothes.

IowaSue45

I am 9 weeks today and I do think my breasts have been feeling softer.

Ondagrow

 THANKS YOU ALL FOR YOUR SUPPORT... YOUR INPUT WAS WAS HELPFUL...

I spoke with my oncologist and I told him I did not want to do it... He said it was procedure and not a cancer issue... He said he understood, it is my decision...

I see breast surgeon Thursday...  I will be telling her the same thing...

MRI is clear on right Cancerous side... I will not touch nodes unless they find cancer... I NEED MY RIGHT HAND...

FINAL ANSWER...

SAMayoFL

Sohard, you go girl!!  I won't see or talk to my breast surgeon again until August 2 but I will bravely follow in your shoes.  I don't need a SNB!!!

15 days to go!

Susan

ladym13

My belly insicion is alot lower than I expected, I wear low rider jeans and the scar is JUST below the button of my jeans, so I am happy about that.

My boob however...uuugggh, it's not AWFUL, but I wasn't expecting to have so many dents and ripples (right where my cleavage is) PS has assured me that this can be fixed at stage 2...mine is also a little tight and higher up, but I kinda like it...lol

I'm 5 weeks out today and feeling fantastic, I dont even have any stiffness in the morning anymore and absolutley NO pain.

c8ndygr1

@Sohard - tape a note to your chest saying 'NO SNB' so they don't just proceed with it cuz once it's done, it's done. And all you will be left with is an excuse that it was 'standard procedure.' Also write it on the hospital papers you sign to authorize them to perform the surgery - in big letters. It's YOUR body and YOUR decision. Don't let them steamroll you.

Ondagrow

Good idea C8NDY...

I AM GOING TO MAKE A SIGN WITH RED MARKER AND CONTRUCTION PAPER... AND WEAR IT AROUND MY NECK ON SURGERY DAY...

              'LEAVE MY NODES ALONE'

I WILL NOT BE STEAMROLLED... WHEN I SEE HER THURSDAY...I AM TAKING SOMEONE WITH ME (THEY WILL WITNESS ME SAYING IT)... I AM EMAILING IT...I WILL ASK HER TO PUT IT IN WRITING AND I WILL GET A COPY... I'M ON IT...

THURSDAY, I AM SIGNING CONSENT FORMS...

IT IS NOT WORTH THE RISK...

 I AM CLEAR... CRYSTAL...

Ondagrow

Good idea C8NDY...

I AM GOING TO MAKE A SIGN WITH RED MARKER AND CONTRUCTION PAPER... AND WEAR IT AROUND MY NECK ON SURGERY DAY...

              'LEAVE MY NODES ALONE'

I WILL NOT BE STEAMROLLED... WHEN I SEE HER THURSDAY...I AM TAKING SOMEONE WITH ME (THEY WILL WITNESS ME SAYING IT)... I AM EMAILING IT...I WILL ASK HER TO PUT IT IN WRITING AND I WILL GET A COPY... I'M ON IT...

THURSDAY, I AM SIGNING CONSENT FORMS...

IT IS NOT WORTH THE RISK...

 I AM CLEAR... CRYSTAL...

Ondagrow

Has any full figured women went from a DD or bigger... to a C cup...

I am a size 14/16 pants 16 shirt... I am a DD... The PS said that she can only get me a C cup... Am I going to look funny...

I am ready to get this surgery so I do not have to ask anymore questions...

I have been so focus on the flat/smaller tummy... I have not thought about the breast... I see some mention ripples and dents... UUUggghhh... More to think about...

c8ndygr1

I was pleasantly surprised that my belly incision is quite low. It skims my pubic hair line. In fact, the two drain holes now healed were in the shaved pubic hair area (upper mons). The incision line is very long across though, from side to side, but no dog ears. I think they make the incision where the best donor tissue is to be harvested from.

Mo, both my noobs have ripples too but my PS said he would fix that in Stage 2. I have nice cleavage even though my noobs are small (A cup?) and they are high. I may get B's in Stage 2. My saggy old boobs were DDs and I'm loving the smaller size now. I can wear tanks without looking like a tank. lol