DIEP 2011

Basil

Hi Suz,

They used both sides of what? Glute or abdomen?

XRAYestInMA

@Basil At my follow-up appt. yesterday (6/21), I mentioned that I wasn't sleeping well while positioned on my back, and my PS responded with his recommendation that I should sleep on my back for 6 to 8 weeks. I had a bilat DIEP, not a SGAP - so perhaps that's the difference in the sleeping positions. Perhaps your PS doesn't have an issue with the side sleeping, and mine does. WOW, I had to drive only 2.5 hours (including traffic) to get to my PS while you had to travel from Italy to Israel. I'd say you definitely traveled farther than me. My 18 hours included pre-op and post-op time, but still was a lengthy procedure. I didn't have to keep being turned like you did. While I'm glad that I was able to have a bilat DIEP and get 2 decent sized C cups, I would have had enough butt fat for a SGAP had the need arose, LOL. I am psyched to have a flat abdomen once again - almost like I had before I had 2 babies. I can start wearing bras at week 4, just none from VS (no "push-up" styles) and no under-wire types - which I favored before the DIEP. Also, a Stage 2 as it refers to a DIEP is when revisions are made if needed. Mine will be scheduled for this coming Fall.

Marcidouglas

My first Stage 2 surgery is set for July 6th.

mscal02

Marci: I am glad for you, and I am waiting to hear all about it.

Anonymous

Ladym13:  I am over 5 months out from bilateral DIEP and my tummy isn't the least bit flat.  It isn't really big but I was hoping for a flatter profile.  I'm going for the 2nd nip/tuck next month just to even out things up top.  It's truly amazing what they can do and it will only get better (hopefully) in the future.  Am thinking maybe I should have worn a "binder" on the belly after surgery, but my PS said no.  Wish me luck next month ladies !! 

Shelly

mrsnjband

It's official, my bi-lateral DIEP is Aug 15.  I almost put it off a week but then decided sooner was better.  I almost paniced when we were actually talking dates.  I guess that makes it seem much more real.  It will be 3 years, 1 month, 5 days since my bi-lateral mastectomy. 

Just to clarify, when I asked about needed to extra tummy fat I meant the fat above my belly button.  I guess I little too much there.  I have plenty to go around bellow the bb.   NJ

Suz39

Uggh just lost my message.



Basil - my abs

I have a binder around my tummy incision, which I think I will have to wear for at least the next week.

SAMayoFL

Mrsnj, woohoo on setting a date.  I know exactly what you mean about panicking once a date is set.  I did the same thing.  But then I see that Suz was in surgery at this time yesterday and is already posting today and I start feeling so much better.  I know we can do this!

Suz, I can't remember now - were you uni- or bilateral?  You are doing great.  Another member of the Wonder Woman club!

Susan

mscal02

lady: My stomach was as tight as a drum for the first 3 weeks. It has loosened up and now there is a natural looking puffiness to it. My Ps said no binder for me, he wanted everything to fall natuarally into place. I am happy with the profile as long as it doesn't get any larger.

NJ: Good for you having your date. You and soharbnme will be close together.

Sam: You are going to be just fine!

nicurn4222

Hey everyone! Had a rough morning but ended really well! Up in chair, eating well. Pain is well controlled! So glad to be on the other side finally!

Sherryc

nicurn congrats and glad you are up in the chair. One day at a time.

msnjmband congrats on getting a date, you have waited a long time.

misszed

Yay for all you newly "dieped" gals,...after the first week, it gets better, the key is to move around a lot like they tell us.  I was up every 2 hours, today l was up and down the stairs efffortlessly, tummy still tight but walked outside and watered my plants....swept up my kitchen and dining area and was not too worn out.  Keep moving..that is the key, l promise   (((hugs)))

NotAfraid

I'm so proud of our 21 Club women!  Recovery will go really fast, I promise.

Basil wrote:I also wanted to ask if there is someone who also had DCIS with no involvement of lymph nodes. and if she had to do any treatments. I was told I don't need any treatments and don't even need to take tamoxifen.

Basil, I was diagnosed with DCIS in 2 areas on the left in January.  I had had DCIS in one spot on the right 7 years ago and had a lumpectomy followed by radiation.  So, this being the 2nd time for DCIS, I wanted it all out.  I had a bi-lateral MX with immediate DIEP on March 29th.  I had to change medical groups to get it done because the med group I was with wanted to do implants.  I did NOT want implants.  They did find a 3rd area of invasive DC during pathology but the sentinal node was clear, so I was actually very luck and happy I made the right choice.  

I don't have to have any follow up - radiation, chemo etc and I can't tolerate Tamixofin (I tried it the first time with disasterous results).  The only thing I have to watch is my overies and I will probably have them removed when I start menopause.  I'm surrently 49, and, if my family history tells me anything, it will be a while before I'm in menopause.

I love how are stories are so different,.  I don't think one of us has exactly the same story! 

Basil

Hi NotAfraid,

why do you have to watch your overies? Are you BRCA +? or did they tell you that because you got DCIS you are at risk for Ovarian cancer? How do you watch your Ovaries, I thought it's a difficult thing to watch?

My doctor told me to get tested for BRCA and if I'm possitive to take out my overies but if Im negative I'm at no greater risk for Ovarian cancer just because I got DCIS. I am currently 36... 

XRAYestInMA

@NotAfraid Your not kidding when it comes to how we all have different stories and different protocols are followed after our initial DX. I was 37 at DX, and my BC was very ER & PR positive. I was no where near menopause, and after the 4 doses of AC were done, my period returned and settled back to being regular. I took 5 years of Tamoxifen, and my period was regular within those years also. After the Tam. therapy was done, my ONC suggested either Lupron shots to shut down my ovaries or a BSO to remove the threat. I'm not BRCA positive, nor do I have a family hx. I did not want more meds, so I opted for the BSO - which I had in Dec 10 at the age of 43. Prior to the BSO, I had an ultrasound of the pelvis and my O's were normal as well as my uterus - which I opted to have stay where it is.  Of course I then went into full-blown menopause, but the hot flashes were not too bad and the mood swings evened out in about 2 months. I'm not sure what the stats were about "If I may get Ovarian CA in the future" or not, but chances are def. better that I won't get it since I have no ovaries. I am done having children, so removing the O's were a non-issue for me. I do not take any meds now to prevent BC from returning, and just keep up my fitness to prevent bone loss (due to the less estrogen). So far I have not experienced any vag. dryness - but if that happens, there is Replens for that. I was never told that I had to wait until "natural menopause" happened in order to have my ovaries out...it was more like get them out to remove the extra Estrogen that fed my original BC.

BTW~ Awesome photo of you in your pool. You looked like a glamour gal and cute dog too. 

Sherryc

I was concerned about ovarian cancer as well so my MO did the BRCA test and it was neg so he said I did not need to have them removed.  I had no more chance of getting ovarian cancer than any other cancer. 

momtomygirls

Hi There.Re: Cheryl.As you know that cheryl had her surgery on the 20th.Things went well but the next night one of the nurses detected that something wasn't right.She ended up having emergency surgery at 10;30.lasted till 2;30 am.They redone 2 viens and she did have a blood clot in 1. Hopefully they caught it in time and the flap looks good.She is doing great and looks great.Keep your fingers crossed and lots of prayers..........Her sister Laura

Sherryc

so sorry Cheryl had to have emergency surgery but glad they were able to fix the issue. Hope she heals quickly now.

XRAYestInMA

To Laura (Cheryl's sister) Thank you again for the update. Thank heavens for the nurses who monitor these DIEP flaps and that it was caught in time. I hope she can soon breathe a *sigh* of relief that all will be well. Please tell her she is in my thoughts and I'm sending healing (((HUGS))) her way.

@Sherryc I know what you mean and I am also BRCA -, but I do not want any chances of getting CA again - and although I know that there is never a 100% guarantee in medicine, I'm fine with removing the ovaries and therefore the risk of that type of CA. My philosophy was if I didn't do it (at my ONC's suggestion), and I did end up with ovarian CA, I would never forgive myself. It was a breeze in the park as compared to the DIEP surgery - I was up and doing housework/laundry in 2 days. As long as you and your MO are comfortable with your decision, that is all that matters. The rest and our mortality is not really in our hands, if you get my drift. 

misszed

Thanks for the update Laura, l will pray that things go smoothly going forward for Cheryl. Sending mega positive vibes you and your family.

mscal02

Thank God for caring nurses that pay attention to details! I am glad that Cheryl is on the mend and have a speedy recovery.

SAMayoFL

OH NO!!!!!!!  Cheryl, you are in my thoughts and prayers girl.  I hope your flap is able to be saved!!

Speaking of flaps, how is yours doing Alexan?  Any change?

You ladies are going to think I am crazy.  There is no family history of BC in my family at all.  The oncologist did the BRCA test based strictly on the fact that I was 44 at time of diagnosis.  I am BRCA2+ and the onc wants me to have my uterus and ovaries removed this year.  My uterus because I have a couple of fibroid tumors and my ovaries because of the obvious.  After all I have been through, I am just not ready to sign up for the hyst/oomph.  I can't put it into words other than the fact that I have already lost enough body parts for now.  I am facing DIEP in 5 1/2 weeks and I just don't want to have any more surgery right now.  I have been in constant treatment or recovering from something since September of last year.  Now, having said all of that, the onc. did my CA125 last week.  In March it was 9.  Last week it jumped to 26.  While 26 is still in the normal range the jump really bothers me.  When I do the test again in 3 months if it is up again I guess I will be going through surgery - again.  Sometimes, I am so tired of worrying about cancer, fighting cancer, having body parts removed due to cancer, I just want to scream.  Then I look around and see ladies who are way worse off than I am and I know I need to be happy with the place I am at.

Nicurn, I am so happy to see you back on the boards!!  Woohoo.  Wishing you a speedy recovery!

Susan

treesprite

Susan,

You are entitled to scream and rant and rave as long as that is what feels right to you. Giving ourselves the space to feel whatever we feel is a kindness we owe to ourselves. Sometimes I scream into a pillow when I'm really really pissed off . . . . it helps to get some of that out of my system.

I was ready to drop kick my DH after my stage two consult . . .he does everything he can to avoid anything even close to a feeling . . . thank goodness I have you all and my girlfriends. 

I'm so sorry that you have to deal with these other worries on top of everything else . . .haven't you already had your share? 

My oncologist has not spoken to me about removing my ovaries and no one has done a CA125; is that because I am ER+/PR-/HER2- ?

mscal02

When I spoke to my Oncologist about having my ovaries removed, he told me that if ca came back it would be in my bones. I am ER+PR+/HER-.

alexanjb

Sue.  Oh Sue.  I like to do primal screams with the radio blasting in the car.  Some songs are better suited than others..................

I don't know what CA125 is?

nicurn4222

Alexan, CA125 is the cancer marker for ovarian cancer.

Susan, I am in the same boat. BRCA2+. I had a total hysterectomy with removal

of ovaries and bladder sling for third degree prolapse at the end of January. I just tell myself

that if I get cancer I would have to have it out anyway but then it would be on cancer's terms...not mine. It is so tough because you have been through so much more. All I know is it is so much easier when you don't have cancer. I loved the hystersister website. Lots of wonderful women for support just like here!



I'm doing well today. Can't wait to get my hair washed today. Looking forward to going home tomorrow!

mscal02

nicurn; My first shower was heavenly. I had to wait 2 days after the last drain was pulled. I quess my PS. was afraid I would get an infection.

Susan; Sometimes it is hard for us not to think about cancer. But like you said there are so many that are worse off than us and  some don't even have cancer. Just scream anytime you feel like.

XRAYestInMA

@SAMayoFL I don't think you are crazy at all, in fact, I'm doing pretty much the same preventative options that you are doing. My Onc. orders tumor markers also - CA 15-3 - which is a cancer antigen that tests for breast cancer, as well as CA 125, which tests for ovarian cancer. I have never (thankfully) had an elevation in either test thus far. A co-worker (she was in her early 50's) who was dx with BC a few months before me has the same Oncologist that I do. She is being monitored with the same blood tests. Well, 2 years after her initial dx, followed by a MX, chemo, and Rads - her blood work on the CA 15-3 started to elevate. The Onc watched it for 6 months, and then ordered a MRI (her Mammo was normal). Sure enough, she had the makings of another BC (not a recurrence or mets) on the left breast !!! She had a MX of that side followed by reconstruction (with implants) and today looks FANTASTIC! If I am 6+ years out, she is perhaps 6.5. 

I know not all Oncologists believe in ordering cancer antigens on their patients, but I am sure glad that mine does. Everytime I have labs drawn and am told everything was normal, I breathe yet another *sigh* of relief. It's very true that if the BC came back, it would be either in the area of where the breast was - in the 1 to 2% of breast tissue that was not removed (regional recurrence), or in the bones, lungs, liver, or brain  = as in BC mets to one of those areas. I don't believe BC usually shows itself in the ovaries. I had mine out to avoid ovarian cancer because it is harder to detect until usually too late. Another co-worker of mine has a sister who was dx with a stage 4 ovarian ca 6 months ago - she is 38 years old. I prefer to remove the threat and forget about it. A good friend and also co-worker of mine was dx with Gallbladder CA with mets to Liver (stage 4) 2 years ago when she went in for a laparoscopic cholecystectomy for gallstones. She found out in the recovery room when she asked if her gallbladder was removed and her DH burst into tears. She was 37, married to an awesome guy, and had 2 girls - 13 and 11, and was given 1 year to live. Despite chemo and a strong will to live, she died 3 months after her dx. She was one of my friends who told me when I was dx with BC that if she had to get CA, that BC wasn't the worse one to get. She couldn't have been more right about that. I miss her and always will.

Susan, sometimes I want to scream also, but you are SO right when you say that there are so many women/people who are worse off than we are. After my initial diagnosis and when I got off of my pitty-pot and finished with the "why me's", I realized that if I had to "get cancer", that BC wasn't the worse one that I could have gotten. I can still see, hear, taste good food - I can walk with 2 legs,use my hands and arms to work and do fun things, and now I have 2 BOOBS again and can wear clothes again without fearing that my prosthetic boob might show. That describes you also - and you will have 2 boobs again soon - so there ya go!

I wasn't all gung-ho about removing the ovaries - believe me. I'm 43 and the ovaries were working just fine - too good I guess since they fed my BC and therefore were co-conspirators in trying to kill me. I was not in menopause and if my mom is any indication of when that was going to happen, it wouldn't have happened until my mid-50's. I want to do whatever is right, but nothing is ever a guarantee, especially with the body. I didn't want to be removing body parts either, especially female ones for fear that I might become like a dude (grow a moustache, lose my sex drive, lose my hair - whatever). Well, ovaries and real breasts do not make me a woman AND I read that it's really testosterone that helps with the sex drive, and I still manufacture some of that - so I'm good. I do not have fibroids, and decided to leave my uterus in for now as it helps support the bladder and having it removed is a lot more of a surgery than a laparoscopic BSO. Did I cry after I had my O's removed ? Sure I did - I was sad that I had to do it, felt a loss of part of my femininity, again felt a "Why Me?", but then dried my eyes and knew in my heart that it was the right decision - for me. BTW, if screaming in pillows and primal screams in cars is effective for blowing off steam, crying in the shower is also very cleansing. All the tears go down the drain and when you get out and dry off, your face is usually not puffy and red .

My kids are 10 and  (almost)13,  and all I have ever wanted for them is to have a good life and be happy and healthy....losing their mother would not make for a happy event in their lives. I told my Onc. when I was Dx - hit me with everything in your arsenal now - and I think she did just that. I am so grateful for every day with them - not every day is full of sunshine and butterflies - but it's still another day 6 feet up (instead of Six Feet Under ~ good show, BTW). 

@nicurn Happy to hear that you are doing so well! You are going to LOVE that hair washing so much! I was able to shower at 3 days post-op while still in the hospital. My PS had some crazy protocol for me = sit in a chair within 12 hours post-op, walk within 24 hours, get Heparin shots in my thighs every morning, blow into a lung-checking machine every few hours, catheter out day 2, shower day 3, run laps aroung the nurses station on day 4 - just kidding on that last one. I gave up my shower chair 4 days ago and can now take a shower, wash my hair, shave my legs - everything !!! I have read stories on the Hystersisters site also, and even posted one. Very informative.How were your hot flashes? Mine were not too bad and only lasted a few months. I took Vitamin E and drank a concoction of organic apple cider vinegar, filtered H2O, and organic honey to help ward off the flashes and I think it worked since they weren't bad at all. Any idea when you'll be discharged from the hospital?

@alexanjb Good luck with your PS appt. which if memory serves me is today. I hope all is improving with your new B. Please try to keep positive.

I will not be wearing an abdominal binder until my last drain is removed. I have it and it doesn't seem like it's going to be too much of a pain, but I may change my mind when I have to wear it. Swelling is going down on the noobs and they still look great, but the left (which was the immediate), is a little less full. I will have that fixed at Stage 2. I'm still not wearing a bra but will be by week 4. Seriously, I don't think I need one as my B's as so nice and perky, but my PS wants to prevent drooping so he recommends a bra at week 4. I'm anticipating an outing to VS and already checked out some of their non-under wire bras on their site. I CAN'T wait to be able to walk into that store and try on bras !!!Look out SEXY BRAS, here I come !!!

momtomygirls

Re Cherly: Well its friday morning,and as far as I know Cheryl will go to a room today,and the worst is over.It looks like the flap has been saved.She is doing well so I am going to go home.I am sure she will be on the computer in no time.She did AWESOME! Take care. Her sister Laura

ladym13

Hi Ladies...

When did everyone resume sex after DIEP? I'm only a week out and I was all over my bf last night (TMI I know, sorry) but anyway, he thought it best to wait a bit until I'm healed...hahaha

I think Sex would be fine now...I am drain free and other than this binder (which I can take off here and there) I don't see the issue, but though I'd get some input here.

 Mo