DIEP 2014

Options
1195196198200201227

Comments

  • sky78
    sky78 Member Posts: 24
    edited October 2014

    edukes, I will say that shaving on the side they took the lymph nodes out on is a challenge as it's pretty numb. I had that side radiated tho so there isn't much to shave. You bring up a great point and if I do need laser hair removal I might as well have them do that armpit!  As far as the shaving causing lymphedema...I don't know, I wouldn't think that would be a problem, but i don't know for sure. 

  • edukes1002
    edukes1002 Member Posts: 47
    edited October 2014


    Skye78, When I met with my team for over 4 hours, I have a very vague memory of them going over different side effects to different things and lymphedema was one.  I think they said I would have to wear gloves when gardening and doing dishes, and to shave with an electric razor to prevent microscopic nicks which could cause a reaction.  I am half English and half Italian.  I have thick, dark Italian hair on pale English skin.  Its not a pretty look and I refuse to be hairy.  Electric razors aren't going to cut it...no pun intendedWinking

  • sky78
    sky78 Member Posts: 24
    edited October 2014

    edukes, interesting information. I was just told to be careful of anything tight on that side. I might have to ask about these other things to avoid. Thanks for sharing!

  • ChrisInPA
    ChrisInPA Member Posts: 38
    edited October 2014

    Drains are out!!   WooHoo!  Still incredibly sore (the breast drains were immediate relief), but ain't no complainin' over here.  :-D

    Debiann - "I will remove them myself" actually crossed my mind.  LOL!  Doc asked me if I was ready and I said "take them out and shoot them".  I know they serve a purpose, but lawsy if the cure isn't worse than the problem.  Free at last.  :)

    Sky - thanks for that rundown of your experience!  Great idea.  Maybe I will do that later this week as well.  Seems each of us is so different!

  • annieb4
    annieb4 Member Posts: 106
    edited October 2014

    Chris . wow, you had those drains in for awhile it sounds like. Happy for you that things are looking up. Take care, and I would like to hear your experience also.

    I was told by my PT to use a good sharp razor instead of an electric razor, she said it was less friction. I was also told to wear gloves and be careful for cuts , etc...I listened for awhile then said the hell with it. I am not going to live my life being leary of a little nick or cut.  I do not, however, get my bp checked or have blood drawn on that side. It needs to be the good arm.

    Happy Tuesday everyone, you know, these first 5 days after the weekend are always the hardest on me !! :)

  • Mommado
    Mommado Member Posts: 68
    edited October 2014


    So I had my 6mths Mammogram and they found a concerning spot in the area where I had my lumpectomy and I've had leaking in my "good" breast so they sent me for an MRI which confirmed the spot but couldn't find reasoning for the leakage..  I was then sent for an ultrasound and biopsy by my oncologist but because of the size they couldn't do the biopsy and told me to wait 6mths and then we would retry.  I then saw my gynocologist for my annual and he said he found thickening in my "cancer" breast that he didn't like and wanted me to see a surgeon for - I asked why since I had just had the mammogram AND MRI and he said that this wouldn't show up on those you have to do ultrasound - my ultrasound was just on the spot not on the thickening areas.  So I know have an appointmet with a surgeon on November 12th - I'm a little nervous because my surgeon is gone and I don't know this one but the secretary in the Breast Center goes to him on a recommendation on the nurse in the office so I'm ok with him - I think. 

    Any way here is my dilema as much as I don't want a mastectomy after all this even if it turns out to be nothing I've decided I don't want to live this way - always looking over my shoulder, worrying if its back so I want to have a double mastectomy.  I really don't want implants - I have this weird relationship with my breast - I love them, think they are great and perfect for me - both my sister and my mother had reductions but I've always embraced my breasts and been somewhat proud of them - I know stupid.  So I've researched DIEP on the internet and I'm pretty sure I have enough stomach area to get almost the same size - 38DD - I'd be okay with a large C or small D also.  Has anyone had experience with:

    1 - having insurance and a surgeion do the mastectomies after lumpectomy without a positive reoccurance? 

    2 - Diep Reconstruction - can it be a one surgery thing or is it a long process?  What makes you NOT a canidate for this type of reconstruction?

    Thanks so much!

    Kristen

  • LiLi-RI
    LiLi-RI Member Posts: 291
    edited October 2014

    Hi Ladies....Just checking in. 

    I had my post-op (gallbladder), and I remain off my feet until 10/31...worried about hernia developing due to the war on my abdomen during the DIEP in June. Nothing is easy! 

    Now, I have been without MO since April 2014 as I requested a new one. So no MO has followed my case in 6 months! I have my "initial " meeting next Tuesday. I just hate this whole process!

    Thanks for the time to vent!

    Underarm shaving....I was initially advised to only use an electric shaver after my lumpectomy and SN removal in 2013. I remember the reason was a possible nick or cut, which may trigger lymphodema. I tried....but now I just carefully shave under that arm...little hair due to radiation.

    Mommado:

    I chose DMX after lumpectomy etc. in 2013 in right breast and then new cancer in left breast the following year. For me it was the best choice, for the reasons you cite in your post.

    I had both the DMX and DIEP at the same time. 11 1/2 hours in surgery.

    Your PS will review all your records and discuss whether or not you would be a candidate - this includes a CAT scan of abdomen to check out vessels, which is key. You should check out the new information on this site regarding reconstruction-- it is excellent!

    I am here if you have other general questions.

    Lisa

  • naiviv
    naiviv Member Posts: 535
    edited October 2014

    Hello all,

    I'm home doing ok on pain pills. Breast  looking good and not very painful. Grating donor areas hurt. I am also in compression 24/7.  No shower till I see him. Sponge baths only. I had to change compression garment it got all wet from leak. Fluid used for grafting came out.

    Pill time.

    Talk later

    Vivian

  • jmb5
    jmb5 Member Posts: 532
    edited October 2014

    Well, I'm only slightly worried, because I know the chances are sooo remote, but I found a lump in my breast. It is right at the very bottom under my left breast (the breast I've had DCIS in twice). My cancer was not invasive, so I keep thinking this lump must be scar tissue or something, but it doesn't feel like the other scar tissue I have. The other scar tissue is more flat and a bigger area. This is a round lump that is hard and hurts when I push on it. Maybe the size of a penny or nickel. Scar tissue? Any other ideas of what it might be? Thinking I better call my BS tomorrow.

  • MartyJ
    MartyJ Member Posts: 1,859
    edited October 2014

    JMB - I had a hard round lump that hurt - it was necrosis.  Not a problem, but call your PS not BS.  Have them work together to determine the cause.  I had an ultrasound.

  • GeorgieGirlKC
    GeorgieGirlKC Member Posts: 132
    edited October 2014

    Been out of the loop for awhile. Wanted to say hello and hope that each of you are doing well with where ever you are in your process of reconstruction. I am 2 months out from my stage 2 and will be having a stage 2b in January here in Kansas City. I am also on the wait list, hoping to get this done before the end of the year... After everything settled down post stage 2,  I had some additional tweaking that could be done to make the breasts the same size, nipples more even ( I have one further north than the other) and to remove a dog ear on the lifted breast. I had not anticipated another surgery but after going through all of this I sure would like to have the same cup size and for my nipples to be close to symmetrical. It sounds like some/many women have had to go back for another stage 2?? Insurance approved it. Going to wait on the tattoo and maybe see about going to see Vinnie or the guy he trained but that is on the back burner for awhile. Will be anxious to hear of others experience with him! 

    I also wanted to chime in on the mammogram discussion post DIEP. I had a new lump in my scar line on the reconstructed side. I mentioned this in a previous post in early Oct.  I went to PRMA in San Antonio for my DIEP and below is a link regarding at least Dr. C's view regarding mammography and imaging post DIEP. It sounds like there isn't a consensus on standards in this area so up to the discretion of the PS you go to...Another gray area. I also spoke with a seasoned mammography technician at one of our local hospitals at a panel I recently attended and they do mammograms on DIEP clients as well. I ended up having a mammogram, sonogram and breast MRI and the results were that the palpable lump is either fat necrosis or scar tissue.The PS is going to remove it when stage 2b is done as it is painful. 

    http://prma-enhance.com/breast-reconstruction-blog...

  • edukes1002
    edukes1002 Member Posts: 47
    edited October 2014

    This may be a silly question, I am new to all of this.  Who is Vinnie?  Is he a famous nipple tattoo artist?  Do you go to a tattoo parlor for these?  Just curious!

  • LAstar
    LAstar Member Posts: 1,574
    edited October 2014

    jmb,  I've had oil cysts that were sore sometimes.  They were diagnosed from an mri by the bs that did my MX.  It feels different from the necrosis and scar tissue.  It is common to find these after any breast injury. A lot of women in my flap cohort noticed the same thing about a year after the surgery. Hope you'll get good news soon. 

  • Donna2012
    Donna2012 Member Posts: 201
    edited October 2014

    vinnie is a tattoo artist in md.  He specializes in areola/nipple tattoos.  He did mine yesterday - took me 6 mos to get in to see him.  Definitely worth it!!!  I can't believe how good it looks!  Fantastic!!  This week it will be 2 years since this nightmare began for me.  Back then I did not think I could be this happy now & look as good as I do. 

  • GeorgieGirlKC
    GeorgieGirlKC Member Posts: 132
    edited October 2014

    jmb let us know what you find out from your doc regarding your lump. You are in my prayers. It is such a scary feeling to find a lump. Also, I wanted to add the information I shared regarding the mammograms post DIEP was only intended to be additional information based on what I found out during my own process of finding a lump earlier this month in reconstructed breast scar. It sounds like it is very unlikely for a recurrence in tissue around reconstructed breast but I agree jmb we want to do what is needed to be sure, whatever that looks like based on PS recommendations. 

    edukes vinnie is a tattoo artist, see link below. Word is he is pretty awesome!

    http://vinniemyers.com/section/105672_Nipple_Areola_Tattooing.html

  • GeorgieGirlKC
    GeorgieGirlKC Member Posts: 132
    edited October 2014

    Donna just saw your post! That is awesome! Congrats on being finished! May I ask if your insurance covered any of your tat? :)

  • Donna2012
    Donna2012 Member Posts: 201
    edited October 2014

    you need to pay for the tattoo & then vinnie gives you everything you need to submit to insurance.  I mailed everything today - I think I will be reimbursed 100%.  I have met my out of pocket max for the year, so I wanted it done in 2014. 

  • edukes1002
    edukes1002 Member Posts: 47
    edited October 2014


    Wow, what an amazing service they provide.  Its very impressive. 

    JMB, sending you positive energy for good news!

  • jmb5
    jmb5 Member Posts: 532
    edited October 2014

    Thanks everyone. I really think it's nothing major, but it is still a bit unnerving. The odds of recurrence were sooo low, and then I had the surprise of Paget's in the healthy breast post MX after the BS said I had a less than 1% chance of cancer there. Percentages haven't been good to me so far, so that's always in the back of my mind. 

    Georgie, thanks for the link. Will read it now. I have a mammogram scheduled in November and don't want to do it. I'm interested in doctors' opinions. 

  • naiviv
    naiviv Member Posts: 535
    edited October 2014

    Hello,

    It's interesting how things vary from Doctor to Doctor. I was initially told there would be no more mammograms/mri's in my future post DIEP. Never asked if same for post lat flap.  I know we still have a risk after BMX and we still have nodes left even after ALND.

    I will ask again. My breast are now 1 Diep and 1 lat flap. They now both have some fat grafting. Left more than right due to port still being in. Once port removed we will add fat to top of that breast.  My left breast feels firm and full. My right a bit softer. I don't think I could feel a lump in them. Incision lines are easier to monitor as well as nipples.  I did have a lump near incision line after last surgery and I was told it was bruised fat, to massage it. MY PT as well as I massaged every day and in a month it was considerably smaller, barely detectable and PS just removed what was left on Monday.

    I do know that once I complete herceptin , a PET Scan will be ordered, maybe that is how they monitor new breast and nodes. 

    I hope you are all well.

    Vivian

  • laurie2025
    laurie2025 Member Posts: 117
    edited October 2014

    Hello,

    I have a question for the group; looking for some feedback, from those of you that work outside the home, and are getting short term disability.  My PS gave me 6 weeks after a diep on both sides, lymph node transplant and port removal.  I was really hoping for at least 8.  Thoughts?  Seems to me, from the way I feel now, 19 days post-surgery, that 6 weeks isn't going to cut it.

    Thank you!

  • LiLi-RI
    LiLi-RI Member Posts: 291
    edited October 2014

    Laurie2025:

    I think if you just call your PS he/she would extend your time. For me, in my state, I pay into Temporary Disability Insurance as an employee. I had my BMX/DIEP in June, fat grafting due to necrosis in August and gallbladder in October. I have been out of work since the day before my surgery. I have been collecting TDI. I am returning to work the 1st week of November.

    Do not rush to return. We all heal differently.

    Good luck....one phone call to ease your mind.

    Lisa

  • lovesroses
    lovesroses Member Posts: 14
    edited October 2014

    Hello friends! I had my DIEP on Sept.4. Haven't had any more surgeries yet. I'm not really sure when my PS will want to continue. My next appt isn't until Jan 2015. I was really hoping the 2nd stage would be before the end of the year but that's not going to happen. What are your thoughts on nipple recon? I'm 53 and not too sure I want nipples again. What are the pros and cons as far as your experiences? I would really like to make an appt with Vinnie but not sure how far out to try to get one. With the 3D tattoos it sure does look like a nipple. Just not sure it's worth the aggravation of having them reconstructed when they could just be tattooed on. Thanks!!!

  • mary625
    mary625 Member Posts: 1,056
    edited October 2014

    Do the nipple tattoos hurt?  Or how much do they hurt?

  • annieb4
    annieb4 Member Posts: 106
    edited October 2014

    Lovesroses....I am going for the 3D tattoos, just because I don't want nips..I like to wear thin t shirts and I hate it when the nips show. I think it is just a personal choice.

    and it shouldn't hurt. If you  have had a MX/Diep you won't have much if any feeling in your breasts.

  • trish01254
    trish01254 Member Posts: 128
    edited October 2014

    Laurie.  I was out on short term for 6 weeks.   If they make you go back then I would suggest you try to negotiate for half days for a week or so.  It was a long first week back at my office job.  

  • sky78
    sky78 Member Posts: 24
    edited October 2014

    i just got access to the picture forum. I'm going to ask my PS office if I can somehow get digital copies of the before pics they took. Think they'll give them to me? I would think they'd have to! Has any of this group posted photos? 

  • debiann
    debiann Member Posts: 1,200
    edited October 2014

    I think if you tell your PS you need more time he will give it to you. I'm the opposite, going to try to convince mine on Friday that I'm ready to return to work Monday, at 4 weeks. I've been blowing through my sick days so I'm in a hurry to get back.

    Yes, I'd also like to know how everyone feels about their nipples. Is a regular bra enough to conceal them in a tight shirt?

  • edukes1002
    edukes1002 Member Posts: 47
    edited October 2014

    Debiann, I was wondering about the nipple thing too.  I hate having nipple show thru and was wondering how it worked. Are the 3d nipples or ones that are tattooed flat and just look like they are slightly projected? 

  • Teacher64
    Teacher64 Member Posts: 840
    edited October 2014

    I love my nipples. A regular bra is all I need. 

Categories