DIEP 2013

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited October 2013


    when I was going through BRCA testing they discussed the possibility of Cowden Syndrome. Maybe google to see if that is it?.


    Pat

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  • Janet_M
    Janet_M Member Posts: 1,068
    edited October 2013


    Ridley - Thank you! Will try for the Celtic Colours, or might just hang out in Orangedale (population 100) with my dads best friend. I've spent many summers in PEI and Cape Breton, but this is our first fall. I love the east coast too - it's magic. But most of all I love East Coasters.


    Kriss42 - I had no caffeine restrictions at all. I lost my taste for coffee while in the hospital, but once I was home I started having a cup or two in the morning.

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  • Katita182514
    Katita182514 Member Posts: 13
    edited October 2013


    Krissy42, my PS told me not to drink coffe, red wine and no chocolate for one month after surgery. This is for preventing blood clots. I follow her orders .


    6 weeks post surgery as of yesterday . I don't post much here, but reading everyday. You all are amaizing ladies here.


    NYTXSPHR, the way you feeling towards your babies is exactly how I felt when my 4 year old daughter came to vist me in the hospital... I felt so much guilt as well. It will past. Trust me. And they will forget that time when you can't do anything even for yourself, never mind your babies.


    Strength and hope to all of us

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  • goldie4040
    goldie4040 Member Posts: 2,280
    edited October 2013


    Patty, that's the syndrome I couldn't remember the name of, Cowden's. NYtx, that's what I bet they are going to test you for next.


    Krissy, every PS is different. Some say no, some say yes on the caffeine. So say compression, some don't. Some put you in a hot room, some don't. They all have their own preferences. But, caffeine does constrict blood vessels, so...

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  • GwennyMD
    GwennyMD Member Posts: 147
    edited October 2013
    Three days before surgery. I still can't believe it. Before bc, I had never been really sick. My only surgeries were tooth implants and a D&C 30 years ago. Good news is that BS approved of new PS before I heard about the situation. It seems that the PS called her to reschedule and she got really mad at him because she knew who much planning I had done for this surgery, especially with 2 of my sisters making arrangements to come here, plus the scheduled time off for me and my daughter. I had to delay my original planned date for 6 months because of the chemo. She also said that the DIEP/tram has become very popular and they are doing one every day at Georgetown. The new PS was brought in specifically help because most of the older PSs do not do DIEP.

    MY PS did not have any food or drink restrictions. However, I think that I can voluntarily switch to decaf for a couple of weeks. The hard thing will be the chocolate. I am addicted to chocolate.






    Sweetpickle - I am so glad to hear that you finally had some good news.


    Happy Thanksgiving to all of you Canuks
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  • mammalou
    mammalou Member Posts: 823
    edited October 2013


    I just got my stage 2 date for 11/12. I want this done, but I'm nervous because I don't even feel fully recovered from stage 1.

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  • Moviemaniac
    Moviemaniac Member Posts: 949
    edited October 2013


    Mamma....I know how you feel....I was the same way about my stage two......terrified that I would have more problems.......it was wasted energy! You will do just fine!


    Sherry.....hang in there......there WILL come a time when this WILL be in the rearview mirror.....

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    Movie, I needed to hear that! I'm freaking out about stage II on Wednesday. If I didn't have this huge area of necrosis in my boob I might just leave well-enough alone.

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  • lahela
    lahela Member Posts: 515
    edited October 2013


    NYTX - absolutely yes to the pain in your breastbone area. I think that's caused by the pieces of rib they removed, but it will get better. So sorry to hear your DH is not as helpful as he could be. Just don't try to push yourself before you're ready.



    Krissy - I wasn't allowed to have coffee or tea or chocolate for a month after surgery. Caffeine constricts blood vessels and the doctors here are pretty strict. I wasn't allowed to go outside for over a week in case the air was cool! Warm room, no open windows and it was the middle of summer!


    My abscess is still healing, albeit slowly. The NP who saw me yesterday is pleased with my progress, though. I'm allowed to shower this weekend - no drain tube because she couldn't get it in the hole without it causing too much pain and hopefully it won't close up over the weekend or they'll have to cut it open again on Monday.



    Love and hugs to all.

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  • Cherrie
    Cherrie Member Posts: 1,423
    edited October 2013


    I had no food or beverage restrictions. However, after surgery, my husband gave me Lovonox shots for 7 days.

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  • mrtw43
    mrtw43 Member Posts: 198
    edited October 2013


    I did not have any restrictions either for coffee or anything food/drink related after surgery. Actually, i was given coffee in the hospital as part of my breakfast. (not that I drank it, it was pretty awful).


    Jeannie and mammalou....I am wishing you both the best and speedy recovery. I am wondering, do you feel "back to normal" yet? I am having my stage 2 in Dec and was thinking I would rather not be 100 percent better, and then do surgery again. I am not sure I want to finally get back to normal and then have surgery again and be laid up for a while. I feel like I am just crossing the finish line of a race and someone tells me oh no, they moved the finish line another mile....


    Lahela...it sounds like you are doing better

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  • christina0001
    christina0001 Member Posts: 1,491
    edited October 2013


    Krissy, I was not given any caffeine restrictions post-surgery.


    Gwenny, wow your surgery is just around the corner! I hope you get to relax and have some fun this weekend! :)


    mommalou, you are moving right along! I bet by 11/12 you are going to feel much more healed from stage 1.

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  • butterfleyez
    butterfleyez Member Posts: 116
    edited October 2013


    GwennyMD my surgery is Tuesday and I've only had a c section many years ago. Never been to the hospital outside of that so I think that's what gets me anxious. Fear of the unknown. I am ready to get this out of my body and begin the journey back to normal.


    About this stage 2 surgery you all are having. The revisions are full blown surgery again? New drains etc?

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  • krissy42
    krissy42 Member Posts: 40
    edited October 2013


    Thanks for everyone's response about caffine. I feel like i barely saw my doctor after he did the surgery. i was allowed chocolate in the hospital, and come to think of it, i had coffee my last day in the hospital. the only "bad" stuff i indulge in now (2 weeks out) is 2 cups of morning coffee and a chocolate here and there after dinner. i am considering giving up the red wine for good once this is all over. I just read the 3 drinks a week reasearch and how it increases your chance of BC by 15%. i knew alcohol was a possible risk factor, but i didnt think from as little as a few weekend drinks!

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    I do not feel 100% yet after three months, but close. I still tire easily. I blame chemo and rads for that as well as DIEP. I still have an achy pain between my navel and my ribs, like I have done a lot of sit-ups. For Stage II, my PS says I will not have drains but I will have a compression garment. He will "clean up" my belly scar, not sure what that will entail, and lipo my muffin top on the sides to have fat for touching up the boobs. He will somehow "sculpt" my abdomen. He will also remove as much of the huge necrotic area on the top of one boob as he can. To be honest, I have treatment-fatigue.

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  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013


    NYTX.....for 14 days out, you sound pretty good!! Getting easily tired at this point is spot on normal!!!! You need to listen to your body, and let yourself rest before you hit bottom, energy-wise. If you push yourself too hard/fast, you aren't going help make yourself stronger, you might just take longer to recover! Try not to lay a guilt-trip on yourself about your babies....this is a passing situation for both you and them, not how you will be interacting with them for the rest of their childhoods. The nerve thing is something very common to almost everyone. If you try "tapping" (literally tapping yourself with your fingertips) on and around the sensitive areas, you may find it helps to settle things down.


    I had caffeine restrictions pre-surgery, partially because of the vessel constriction issues, but also because my PS knew the hospital protocol was to not allow caffeine to any microsurgery patient, and he didn't want me to have to go through the caffeine withdrawal headache thing, on top of everything else. I completely lost my "desire" for coffee anyway, post surgery, and it was probably close to a month afterwards before I wanted coffee again. I had heparin shots while in hospital.


    Stage 2 is a different surgery for each of us, but I think it would be safe to say, it is NOT the intense recovery of the initial surgery. Some ladies have lots done, some, not so much, but it isn't the long anesthesia, or the same "toll" on the body.


    mammalou....I'll ask the mods to add your stage 2 date to the list.


    Have good days everyone!

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited October 2013


    Good morning, gloobsters! It's been a little while since I've had a chance to post, but I'm staying up with the 'haps here.


    I saw the infectious disease doc yesterday, thinking he would discontinue the IV antibiotics, but nope. He wants to keep them going until Wednesday. I was a little blue about that but willing to go along to keep this cellulitis from ever popping up again.


    For my original DIEP, it was NO caffeine before or after surgery, a heating blanket in the ICU to help keep the blood supplies open, and no formal compression, ever. My PS wanted me to wear squeezy panties that I could just buy at the store.


    So here's a question...when I was on the wound vac, the company sent me a HUGE box filled with supplies, and I used just a fraction of them. Now I have completely sterile, unopened stacks of supplies for a wound vac that the company won't take back, and I don't want to just throw it all away. Anyone have any ideas?


    Happy Saturday, sisters!

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  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013


    jeannie...have you asked your PS what he means by "cleaning up your incision"???


    I guess I'm in the minority....I want to know the what and how of my PS plans and I want to know the details of what I should expect after surgery. I think you are absolutely correct in the chemo/rad component of your fatigue....it takes a big toll on our bodies, that doesn't disappear the day after the last tx.


    hey sbe.....good to hear from you!!!! hmmm......re-gifting medical supplies is a tricky thing. I have no suggestions, other than to ask around in your "medical contacts". Are there any "community health" programs that may take them??? Your presentation is coming up soon isn't it???

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  • mammalou
    mammalou Member Posts: 823
    edited October 2013


    I feel almost normal but not fully recovered. I still have pain in my abdomen and swelling. I just feel like I want to get this done ( I think I've said that prior to the last two surgeries), and I don't want to waste another summer healing. I will be having lipo and fat grafting and a small implant. 😔. Oh, and a nipple constructed. I'm not sure what he will do about fixing abdominal scars.


    I hope it is an easy recovery because I'm planning on going to work the next day. Doable?

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  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013


    mammalou....don't want to burst your bubble, but I doubt if going to work the very next day is realistic. Maybe a couple of days off??? Have you been given the OK to do that by your doc? Aren't you a teacher and on your feet all day??? But....I have not had any of those procedures, so maybe some of the veterans have a better idea of what you should plan for. sheesh.....sorry guys, just broke my rule of not advising on stuff I haven't been through or have knowledge of.

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    Nihahi, it takes me some time to process what the PS says and by the time I'm done the appt. is over! My ab scar is crooked in the middle and there is some bumpy scar tissue there. I'm assuming he is going to straighten it out and clean it up. I trust him but I think he wants me to look better than I care about. He IS a plastic surgeon. He looked a little surprised when I said I didn't want lipo beyond my torso, saying "lots of women want it."

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  • mammalou
    mammalou Member Posts: 823
    edited October 2013


    no, I haven't spoken to doc about it yet. My preop is on Halloween. I realize I might have to take another day or two off, but I'm just hoping not to. I'm taking a mini vacation to the Orcas Islands with 8 high school girlfriends on Nov. 7-11' then surgery on the 12th. Couldn't miss the trip! I am one of those people that doesn't take much time off and sacrifices for my job all the time, I'm trying to change that because I know that if I was gone tomorrow, my job employer would not even care. Thus, that's why I'm not waiting until summer for this surgery. Baby steps here. Lol. Thinking about now, I will just plan on being off for at least 2 days. Thanks nahahi, and your wisdom is always appreciated.

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  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013


    jeannie....I think it's a delicate balancing act between "what we can handle NOW" and "what we want for the FUTURE". That you trust him to care for you appropriately, is a wonderful thing. Trust goes a LONG way to helping us through the tough stuff.

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  • goldie4040
    goldie4040 Member Posts: 2,280
    edited October 2013


    Hey Mammalou


    I am excited for you to have your revision. I have a question. You mentioned a small implant. That's what they have talking to me about, and I was getting this surgery to avoid the implants. Are they putting them under your pec muscle, or just under the tissue? I was reading that some surgeons actually do the implant and tissue transfer at the same time.




    Quite a few revisions coming up. So great!!!!


    Jeannie, your's is going to go fine. Just avoid the constipation and we should be good!


    SBE, sorry you are still stuck with the antibiotics, but it is better than ever getting cellulitis again.


    I have a question, and I don't know if anybody has had this experience yet. I was reading article about fat grafting being used intentionally to heal radiated skin. Has anybody had fat grafting to radiated area, and if so, did you notice a difference? Seems they figured out the benefits of fat grafting on skin quality from cosmetic procedures to the face. Women who had fat injected into their faces had a marked improvement in their skin elasticity, etc.

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  • Carmelle_in_CT
    Carmelle_in_CT Member Posts: 26
    edited October 2013


    Hi all,


    Can't remember who but somebody that had surgery on 9/25 was out shopping??? I had mine on 9/24 & the only places I've gone are dr. appts with DH driving. I'm feeling a little frustrated at my (seems to me) slow healing. When I take a walk I have to find something to lean against (tree, car) after a little while because my back just hurts. Also, the tightness of the belly is just weird - not really painful but uncomfortable. I really thought I'd be further along by now (I'm 56 and was in pretty good shape before surgery, ie., walking, zumba & cardo classes). As for restrictions, my PS gave me none either before or after surgery so I'm drinking coffee and having an occasional piece of chocolate. Gonna try to take more walks cuz I'm impatient to heal...

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    Thanks, Nihahi. Goldie, too.


    Mammalou, the Orcas Islands are beautiful! You'll have a great time.

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  • butterfleyez
    butterfleyez Member Posts: 116
    edited October 2013


    debdylan how long ago was your surgery? So stage 2 is basically fine tuning surgery. Got it. I'm sure ill need that down the line since I'm only doing one side. Nihahi I'm a lot like you.. I need data on what's happening. I'm an engineer by trade that deals a lot with statistics and a single mom that needs structure so data, information and details are my comfort zone. I even asked my PS what her error margin was and her confidence interval 😳 we both laughed at that. Sometimes I have to remind myself not to worry so much about the details and find a healthy balance

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  • sibrhusky127
    sibrhusky127 Member Posts: 21
    edited October 2013


    Thanks for all of you who provided input on your DIEP flap surgery. I was all set to do implants, then after these expanders (which I can't STAND!) I feel like the only real thing I would be satisfied with is DIEP flap surgery.


    Still it is a big decision. When I woke up after the mastectomy surgery, I felt like I couldn't breath because of the tissue expanders. I've had a lot of pain with them


    I had the mastectomy surgery at Johns Hopkins. It went very smoothly....but have some concerns about doing DIEP flap surgery there.


    Hope everyone is having a good weekend. Here in the northeast, we are drying out from 2 solid days of pouring rain. Interstates and roads were closed, schools started closing etc. It was nice to see the sun today.

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  • NYTXSPHR
    NYTXSPHR Member Posts: 12
    edited October 2013


    Carmelle...please don't measure your recovery by mine or anyone else for that matter. I am a high strung working mother of two little babies that seems to be happiest swimming upstream. I push myself because I am stuck in fight mode. I hear this is common for people with multiple Cancer DXs. I fight my body and my limits constantly as if they were a separate enemy. Sometimes it feels like I am daring my body to just break and defeat me. Nihahi is probably right and I will pay for it in the long run.


    I am also blessed with a very generous pain tolerance:)


    Nihahi...thanks for the nerve tip. It worked! Wow!


    Lahela...thank you. Are we talking weeks or months before the breastbone pain goes away?


    Goldie and Patty...thank you for thinking of Cowdens syndrome. When I looked that one up I found a bunch of others as well.


    Katita...guilt is the perfect word I couldn't think of. I have spent so much of their little lives either sick or healing. I feel like they deserve a healthy Mamma!


    I am still trying to catch up on posts and replies. If I missed a reply it is certainly not intentional!

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  • sherry35
    sherry35 Member Posts: 409
    edited October 2013


    sbe- I had a lot of vac supplies left as well. I gave them to my home care nurse who can use them with any patient with a vac who may be running low on supplies.


    I've decided I NEED a vacation and soon!

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