2018 DIEP Surgery
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Hi everyone...my surgery went well, and I spent two nights in the hospital. I think I'm doing pretty good, but goodness it hurts to stand and walk. I feel good when seated, but am trying to get up and move at least a little bit every hour. My breasts are scary looking right now but I know they will look better and be more symmetrical after Phase 2. One of the worst parts for me is my back pain...it hurts terribly, I guess because it's having to work harder right now. My PS does not put binders or bras on his patients so I'm wearing a caftan that covers my drains and doesn't put any pressure on incisions.
Ann63, been thinking of you...hope your surgery went well and that you are feeling ok.
Shellybeans...my goodness, they need to make up their mind so you can prepare! I feel your pain in not wanting to miss that game, I'm a Bama fan and would love to be there. Roll Tide!
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SoniaL - sounds like you are doing great. Glad to read of someone else with a short hospital stay and no binders. I loved getting home to familiar surroundings, better food and the option to walk around the block rather than around the ward. You are right to focus on moving around in small bouts frequently. It will get better sooner than you think.
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Sonia, so happy to hear from you and that you are home. The back pain gets better as you are able to stand straighter. Hoping for continued healing. Did they remove a lot of your radiated skin?
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OCDAmy...yes, the football shaped "paddle" on my radiated breast is very large, it takes up most of the breast so I know they removed a lot of the radiated skin. It was in bad shape. The paddle on my right (non-radiated) breast is much smaller. The difference in the scars tends to make the breasts look very uneven, but I think it's just because my eye goes to the scars. I think they are close to the same size but definitely look forward to Phase 2 to make everything look better. But for now, I'm just thankful that the flaps are living! Glad to hear that the back pain will get better too, that is encouraging!
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Great to hear you are doing well Sonia! I've been cleaning and rearranging furniture all day and it finally struck me - I'm nesting! I think I'm just starting to get nervous about all of this and want to make sure everything is okay at home. My bed gets delivered tomorrow and I've been on a tear to get my home organized. It's exhausting but it does help me to focus on something other than surgery.
Anyway - just so glad to hear you are doing well. Good luck in your continued recovery and keep us posted on your progress!
Michele
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SoniaL I'm meeting with Robinson tomorrow and wandered if you would be willing to chat? I'm sending you a friend request
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Hi Mucki1991...yes, would be happy to chat with you. I'm not sure where to accept a friend request, I don't see that popping up on my account but feel free to message me. I am also seeing Dr Robinson tomorrow for my follow-up, would be wild if we were there at the same time. I've got a 10:45 appointment - hope yours goes well.
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Hi All, I had surgery on 8/22 and was discharged on 8/25. It was a bit of a bumpy road though. PS had to go back in right after I was in recovery because he wanted to be sure everything was ok. Apparently there was a little congestion in the blood flow. He had difficulty because I didn't have very many good blood vessels in my stomach. But he didnt put me back under general anesthesia and when he went back in everything was flowing well. The doppler checks were all good so that was a great relief. He said this happens about once a year. It looks really good. I too had a lot of the radiated skin removed so most of the breast is stomach tissue. My next hurdle was nausea and vomiting on the 2nd day. I really didnt use the morphine pump much but whén they were going from that to Norco, my body couldn't handle it. I started having a very constricted feeling around my stomach and could hardly eat or drink anything. Then the nausea set in and I started vomiting and not just a little. This was like projectile. I felt better after the first time but started to feel ill again and just miserable. They had been giving me solfane for nausea but it just wasnt working. After the third time of this and beginning to dry heave they had me put on phinagen and just some Tylenol for discomfort. Well that was the trick. I never experienced pain just that restriction and stomach discomfort. I really didn't need a strong opiod and I never have tolerated them well the few times I have used them. My mom suggested rimadol (that is probably not the correct spelling) and I am able to tolerate much better. After that I felt much better and have been getting stronger and my appetite is back. Feeling really good. Of course there is the tightness in the tummy area but that was to be expected along with some swelling and bruising around the incisions.
Sonial- So glad to hear you came through yours well except for the back pain but keeping you in my prayers for that to clear up quickly. My follow up appointment is this Thursday. I too am looking forward to stage 2 to get my good side matching the other. My mom thought the surgeon did a really good job and I agree. Even with all the swelling and everything. So far I haven't been given any compression garments. Have you?
Teacher01- My thoughts and prayers are with you and that you will get a good report back
Thank you all for your encouragement and input. It has helped immensely.
Good night. 🌙💤
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I'm there at 8:30 I'll send you a message with my phone number
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Hello everyone, hope all is well:)
I'll have my Stage 2 this Thursday, although I'm not looking forward to the discomfort of the lipo/fatgrafting, I am looking forward to the cosmetic side of this surgery. Somehow it feels better than the others. I feel unusually calm about it, I've had 6 surgeries in the past year and a half so this kinda just feels like another Thursday to me:)
Shellybeans, was the decision on your surgery date made yet?
Good luck tomorrow ishallovercome!
Good luck Friday Casun19!
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TWills - good luck Thursday. I'll definitely be thinking about you. I have to say, having someone going through this with the same drs makes it a little easier for me. So thank you!
Right now I'm scheduled for 9/14. They didn't call to move me to 9/1 so I guess that's it. Praying they don't delay past 9/14.
Good luck Thursday!! I'll pm you my number.
Michele
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Ann, so glad to hear from you. Scary that they had to go back in but sounds like all is well now. Wishing you continued healing.
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Ann63, your fighting spirit shines through. Thank you for sharing. I’m very glad to read you are on the other side of that bump in the road. Good for you. Wishing you a safe and speedy recovery
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Gaining 7 pounds is an event? Oh, to live in such a world.....
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Good read, thanks OCDAmy. I’ve doubled her “event” since my DIEP. If I’d have waited a few more months I could have went up a size lol.
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Good luck tomorrow Twills! Looking forward to your report. I have my consult with PS about Phase 2 on 9/12, so super helpful to hear from all of you.
Phase 1 ladies -- the recovery is very real for at least 4-6 weeks. It gets better. I'm 6+ months after surgery and although I wouldn't say this body is like it was before, I can do most everyday things and work out at the gym, etc. Main concern is not triggering lymphodema which is from the mastectomy, not the DIEP. Sending everyone healing wishes.
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2002chickadee, thank you, I’ll update as soon as I’m able to. Speaking of Lymphedema, I think I’m having my first issue with it now. I have noticeable swelling in my affected arm since I’ve been going to the gym again. I knew it could happen but it’s so aggravating having to deal with another issue. I had every lymph node they could find removed on that side so it’s not surprising. When I was in PT/OT for my shoulder issue and for cording the therapist, which is also a lymphedema specialist, mesaured me so I at least have a baseline. Oh the joys that keep coming up:/
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TWills - get to your PT/OP ASAP!! Get fitted for a sleeve and glove. If you're now missing all nodes on one side, consider node transfer or other surgical remedies. If you catch it early, you can greatly reduce the risk of “full blown" lymphedema. I've found that elevating my arm at night helps a lot - sleep with an extra pillow under the full length of your arm. Also look up videos on dry brushing. As you know, lymphedema is life-long and can be quite debilitating! To date there is no failsafe cure.
In thinking back on discussions with my BS, MO, and PS, I think they could have done a better job of explaining the ramifications of node removal and the risk and realities of lymphedema. Of course our first thought and instinct is survival - I was given the choice of limited node removal vs the “old" more conservative method of removing more nodes (as part of a random trial - I wouldn't know which I got until surgery was over) and I declined and went with the “more" option. I would have given it much more thought if I knew as much about lymphedema then as I do now. A pretty high % of women develop it (even 10 years after our mastectomies) so it is something we always need to be watching for. Best to you!
Lanne
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Ann, good to hear from you. Sorry you had a rough time but glad to hear things worked out well and you're on the road to recovery. And no, I do not have any compression garments either. My PS said he doesn't use them, so I've been comfy in my large clothes and nothing binding me!
Twills, good luck tomorrow - hope all goes well!
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good luck Twills!
I am starting to get nervous for my stage 2Friday. But I am sure everything will be fine. Check back in later
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Thank you for all the good information!
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Twillis and Casun - I’ll be thinking about you and sending good mojo, So excited for stage 2 and getting further along in this journey!
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TWills and Casun, Looking forward to hearing about stage 2 and hope for a speedy recovery.
I noticed that this belly compression thing is different for all of us. I was sent home with a binder and told not to wear it at night. At my three week follow up he told me I could stop using it and to start engaging my ab muscles. I do notice after a long day at work I have quite a bit of swelling below the incision and to the pubic bone. It is not as noticible in the morning. I am just wondering if I should go back to using the binder, would that help with the swelling? How long does it take for this swelling to go away?
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I’m headed home, everything went well. Easiest time so far with anesthesia! So happy. So far so good with the ride home, this is usually the tough part to me with car sickness. Half way home and no problems. They tried something new with the anesthesia and so far it has done the trick. I’ll update tomorrow:)
Casun, good luck tomorrow, I’ll be thinking of you:)
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Hi OCDAmy - saw my PS this week and she said all swelling has to be long gone before stage 2 surgery - minimum of 3 months, or else your body will swell up during surgery and make the stage 2 work difficult. I was told to wear my compression girdle 24/7 for swelling and then after stage 2, some type of compression panty for 18 months to ensure no hernias - but I'm not sure if that is for the DIEP abdominal scar or my abdominal muscle repair, or both.
She also said that the tissue/fat moved to my breasts will and has grown. She put 100 (CCs?) more tissue in my radiated side than my non-radiated side, but the radiated side is noticibly smaller - it hasn't grown as much yet. She hopes it will “drop" and grow to catch up with the non-radiated side within the next three months. She also expects to do fat grafting on the radiated side.
Re: node transfer, I asked how many nodes were transfered but she said they can't really tell - they take a chunk that has 2 sets of an artery and a vein and hook them up to veins at the transfer site. It will take about 3 months to know if the transfer is working. I visited my PT today and she said my upper arm is only slightly bigger than it was 8 months ago (before I started noting swelling) which is really good considering I had the transfer surgery 6 wks ago.
AND I told my MO that my (horrible) Letrozole aches and pains have not returned (still knocking on wood) and he wondered if the acupuncture I had during surgery for nausea had anything to do with that. They placed small discs with a small pressure point behind each ear - didn't remove one of them so I had it on for about 4 days until I got home and noticed it.
This is all so freaking fascinating but I'd rather have watched a documentary than be the subject.
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Congrats Twills! Glad to hear it went well today!
Lanne2389 - it would be so great if my AI aches and pains go away after surgery.
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So not to sound dumb but can someone explain the information below Barney style for me. This is some of the information I received from my pathology report. Has anyone else been diagnosed with similar results and if what if anything should I expect as far as treatments? This is a bit of a curve ball was not expecting anything from the pathology report
Surgery 8/7/2018 PBMX w/ Free Tram Flap
PATHOLOGY Report,Paget's Disease both breasts,
RightDx 8/10/2018 DCIS, Right, <1cm, Stage IA, Grade2 ER+ PgR+ HER2 negative
LeftDx 8/10/2018, DCIS Stage IA, Grade 2, ER+/PR+, HER2 negative
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Hi Elijahgirl
My faux medical degree is from Google University so wait for your MO and BS to explain, but this is what I found from the info in the article and links here: Your Diagnosis
Paget's Disease - a type of breast cancer found in the nipple and also sometimes areola, possibly bcs cancer in your breast moved down your milk duct to your nipples.
DCIS - the cancer is in your breasts (and nipples)only - not lymph nodes. WOOHOO! This is good!
Stage1 Stage 1A - small tumor, no nodes. This is good news too! Caught it early!
Cell Grades Grade 2 (of 1-3) your cancer cells look and grow not quite normal but not as “not normal" as grade 3
ER+/PR+ (Hormone receptors) cancer feeds off estrogen/progesterone. Very common type of cancer
PgR+ - I think this is the same as PR+? Not sure...
HER2- Your cancer is not receptive to this hormone - yeah!!
The Your Diagnosis link gives more info on how to interpret your pathology report - your Drs will go over all of it with you.
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Elijahgirl, what is different in this path report from your original diagnosis/biopsy? Have you had the oncotype test? That is a big factor in chemo/no chemo.
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