2018 DIEP Surgery
Comments
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Hi parachutes. That is a good question. I often wonder if recovery would have been easier if I had waited but only because I had chemo first. That's a good question to ask your plastic surgeon. Perhaps others can weigh in on this.
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The biggest thing you want to consider is if you plan to have rads or if there is a chance you will have rads. This seems to be what can give you the biggest headach down the road if you rush things. I flat, no expander...and am so THANKFUL. I can get recon when I want and be comfortable in the mean time. I have plenty of tummy that I am not worried about have breast skin on top.
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I don't think it's too much difference if you do mx with expanders or mx with immediate DIEP. Both ways you have pain upon waking, recovery of 4-6 weeks, limitations on lifting/activity, etc. And after mx+TEs, that next surgery will affect breasts and abdomen (2areas vs 1), so at some point 2 areas will be affected at once. Mx+TEs just delays it. expanders are no picnic as you've got to go in for fills and they are uncomfortable. And sometimes when they do the mx first and delay DIEP you may have more/less hides less scar lines depending on the mx technique used by the BS vs a BS-PS team that works together and coordinates incision lines for best scar outcomes.I'd rather do the pre-op, anesthesia, pain and recovery all at once vs stretching it out over multiple surgeries with TEs that will be uncomfortable all the days in between mx and DIEP. Just my $0.02.
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Good Morning Ladies~
Sorry I haven't updated sooner. I went in the 28 for my surgery & stayed in ICU until late on Easter Sunday.
Haha! Mitzi458, I had the same thought when they wheeled me into the OR. "Holy S☆*t, what am I doing here!". I took a deep breath & thought how am I going to get through this & then I was waking up. My surgery was 16 hours!! My whole family was calling the hospital & were very worried. I saw my surgeon on Tuesday. She said I did super & look super. She said I was in for so long because it took a couple hours to undo the reconstruction that had already been done prior to the tattoo disaster. On my very 1st day out of surgery a pt came in & said lets get you out of bed! Ooookay... so he had me kind of roll out of bed. I felt one of my tubes was caught & said hang on, he said No come on & rolled me out of bed. I walked around for a few minutes & he helped me back into bed & said good job see you later. 15 minutes later I felt wet down my side and back. Turns out by not stopping when I asked the pt one of my tubes was pulled out. My surgeon was mad. No more PT for me.
"Oh" for you ladies wondering about walking hunched or straight. I walked hunched because they kept telling me to. My back was hurting more than any surgery site. I told my surgeon & she said if it doesn't hurt standing up straight then stand up straight. I'm not completely straight but pretty close to it (2nd day after surgery) & my back doesn't hurt. Do what your Dr. suggests but if it hurts be sure to say something.
Long story short I am out and so far pretty happy with the out come.
Thank you, thank you everyone for your advice!
Lori
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Parachutes - having had DIEP reconstruction a year after original breast cancer treatment and mastectomy it feels to me as though I may have had a better recovery than I would have done from immediate DiEP. Benefits of delay were that I am not in the midst of initial cancer treatment and have been able to plan and to be as well-prepared as I could physically and psychologically for a big op. The surgeon also told me it was a slightly smaller operation, at least by virtue of being shorter and not involving lymph nodes, but I think that's quite a marginal thing. I feel as though I'm getting back to normal relatively quickly (apart from an annoying oozy bit that needs to heal faster!) - but this is really just an impression, it could be that I would have been pleasantly surprised if I'd done it immediately too. I delayed partly because I thought I was probably going to have chemo and didn't want to cope with that and DIEP aftermath together, and I also wanted to minimise disruption at that time for my child's sake and in order to work as much as possible. However, in the end a low Oncotype DX score got me off chemo - if I'd known when I made the original decision about the mastectomy that I wouldn't be having either chemo or radiotherapy, I would probably have gone for immediate reconstruction.
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Cindyanne, how are things for you? have you decided to proceed with your surgery?
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Parachutes, regardless of opinions on which is better, your diagnosis and treatment plan should play a significant role in the reconstruction plans. Knowing radiation was required, my plastic surgeon wouldn't have done DIEP prior to radiation. My breast looked like hell after radiation. When I finally had DIEP, he removed my mastectomy scar (and sent to pathology) and removed a good bit of radiated breast skin, replacing it with healthy, supple belly skin. I'd hate to think what my DIEP breast would look like if it had had to handle radiation.
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runrcbr, very good point about radiation. It's such a wildcard. When you know you have positive nodes, you know that radiation will be necessary. I rolled the dice on immediate recon but would have preferred to have an SNB prior to BMX and DIEP. I have read here that a few women have an SNB initially as part of diagnosis and preparation of treatment plan. This is not the norm unfortunately.
justme_2, thank you for the update. Everyday gets better. I hope you can take it easy and heal quickly.
Sending healing thoughts and positive support to everyone here healing and deciding.
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suburbs
Good point on the timing of sentinel node biopsy. I had mine about 3 weeks prior to mastectomy- outpatient and back at work a few days later. It was nice knowing more about my diagnosis going into the mastectomy. I still had to have more lymph nodes removed and it was uncertain if I’d wake up with my nipple but I had a pretty good vision of the 6 months following surgery.
I would encourage women to ask for SNB early and if the doctor says no ask why.
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parachutes - I had "delayed immediate" breast reconstruction. My bilateral nipple sparing mastectomy was preformed locally. She performed the mastectomy, left all the skin, and sewed me up. We waited for a clear pathology report. Then, 2 weeks later, I traveled to my microsurgeon to have tissue transferred to reconstruct my breasts. My microsurgeon said that the nipples and skin often survive better with better blood flow by having a bit of "breathing room" before having the tissue placed in. My nipples survived wonderfully, and I only had a tiny bit of skin along the bottom edge of one breast that had to be trimmed. It was dark purple. Other than that, I didn't have any problems with the surgeries. Let me know if this is something you might consider and have questions. I'd be happy to answer them.
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I take that back. I did have one problem. Even though drains were in place after my mastectomy, one breast kept accumulating fluid that had be aspirated once prior to my reconstruction.
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Hi Everyone,
I am having a bilateral mastectomy with DIEP flap reconstruction on Wednesday April 11th -- in 5 days! At Stanford in Palo Alto, California. I am getting nervous and uneasy, but I am also feeling positive about having the surgery and getting my breast cancer risk down to 1%. I have a great plastic surgeon named Dr. Momeni and an excellent breast surgeon also, and I feel very well cared for at Stanford. How long did you all stay in the hospital? They are telling me 3 to 5 nights. I am concerned about pain and whether I will need to take narcotic pain medication afterwards. How long did you all have to take the narcotic pain meds? My PS Dr. Momeni said this is just the first of many surgeries. I will have the nipple reconstruction at some point, and what are the other surgeries he is referring to? He did mention adding fat to tweak size and shape and possibly doing a scar revision. How many additional surgeries can one expect to have after the initial BMX/DIEP procedure? He did offer to put in an implant with or after the flap procedure for more volume but those come with their own complications, which I am concerned about. I think I will not have an implant with the DIEP. Has anyone had that combination?
Thanks in advance for your responses. I really appreciate this group. :-)
Cathy
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Dawnann I changed my date to May 4th. It actually works out great for the hotels. I am getting a little nervous though :]
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Spent three nights in hospital which seemed to be the absolute minimum (but this is the English NHS, where beds are in very short supply so our stays will be as short as feasible). I declined the narcotics after the first 30 hours as I was concerned that my blood pressure was v low (90/50 at one point) and I felt weird when I stood up - I felt much better when I stopped taking them and don't think I would have been out in 3 days if I'd continued. Pain was quite manageable with paracetamol and ibuprofen after that point, I found and I had problems with constipation as it was - didn't want that to be made even worse.
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cybercathy, I spent 5 days and I think the surgeries he mentioned should be the only ones you’d possibly have. Good luck next week, we’ll all be rooting for you!!
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cybercathy- flap recon is usually separated out into 3 surgeries:
stage 1: mx (if not already done), harvest tissue from tummy, transplant it into the breast area
Stage 2 (often referred to as the “make them pretty stage”): fat grafting, lift, reduction, shaping/sculpting, symmetry, scar revision, sculpt hips/waist/thighs to reproportion the lower body, etc
Stage 3: Nipple recon
Some women need multiple stage 2s which are often referred to as Stage 2a, 2b, etc. everyone's stage 2 results are different and there is no way to tell who will need multiples and who won't. Sometimes it’s not necessarily a need for subsequent stage 2s but a want (maybe you still feel too large and want furtherreduction, symmetry wasn’t quite there, loss of grafted fat, etc). Thankfully, stage 2 surgeries are far less difficult and invasive and only require a week or two recovery.
Hope this helps!
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Hi All,
This is a repost from Exchange City.
I am 1 yr past chemo, 10 months past BMX and 6 months past radiation. I currently have tissue expanders (hate them) and based on all conversations and choices made with my PS at time of BMX, I fully anticipated that my next step was exchange for implants. Met with PS to discuss and schedule the exchange and he is now suggesting DIEP as an option instead of implants (I don't need to create breast pockets since I've already got those, just use tummy fat to fill the pockets). Have any of you been in this situation and decided on implants? or DIEP? I've had such an uncomfortableexperience with the TEs that DIEP sounds enticing, but that's a lot of surgery and recovery time, and it just wasn't in my head that I'd even have this new option.
PS says that wmn with implants are happier with outcomes over DIEP but at about the 5 yr mark there is a shift. Have any of you had (or have) both and agree or disagree? Also, if you’ve had TEs and aside from TE pain, do implant have a different feeling? Are you always conscious of having something in your chest?
PS - would also love to hear from anyone having experience at OHSU in PDX - you can message privately if more comfortable doing that.
Thanks, Lanne
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Hi Lanne- hopefully someone will be able to chime in on implants & TEs vs. DIEP. I had DIEP and can honestly say that to me my chest feels like it did before surgery (minus the nipple sensation). From the outside, they look natural, they feel natural, they move naturally. That was one of my fears if I had gone the route of implants. I have not seen anyone who has said this about implants. I would do DIEP again in a heartbeat. Hope this helps!
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I'm glad you're proceeding... It sounded like you were getting sold feet. Fyi..I talked to my tax attorney, and he said 100% of expenses related to destination surgery are deductible
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that last post was for cindyanne.
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cindyanne- just talked to my CPA on Friday about my medical expenses for NOLA for last year. Here’s what they said:
$50 per person traveling per day to cover hotel expenses
100% cost of flight or mileage for each traveler (ie given 2 traveler traveling together, 2 airline tickets or 1 car mileage), baggage fees
100% of rental car charges for the duration of the trip.
100% out of pocket medical related costs (ie prescriptions, deductibles, copays, medical equipment, recliner if you needed to buy one and get a prescription from the center).
100% of all other medical related costs throughout the year unrelated to NOLA as well (ie any other prescription copays, vision care out of pocket expenses, dental care out of pocket expenses, dr office copays, PT copays, any other medical deductibles).
Food/meals out of town are not deductible as you would have had to eaten if you were at home anyway.
Save all your receipts
Hope this helps.
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Hi! I am trying to decide if I want to have the DIEP flaps or do radiation. What does the recovery time look like and are you I happy if you have had this done? I have baby fat that will work fine for the transplant (he is 15 and the fat is still here, so I will be happy for it to go). I have all of the opinions and thoughts swirling around and I want to make a good decision - for me to heal all the way around.
ONCA 53 / ER+/PR-/HER2- Stage II IDC 1/2/18 lumpectomy 1/18/18. Currently in round 3 of AC, one more round before Taxol
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Thank you Lula and Dawnann. I actually have been traveling for medical treatment since December of 2016. My treatments and BMX were all done at Moffitt in Tampa, Fl which is 6.5 hours from our home in Destin, Fl. We made the trip every three weeks for over a year. (herceptin) Keeping track is kind of a pain but well worth it!
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Cnewcom, your question about immediate reconstruction and radiation kept me up at night last year. Because of multifocal disease, I had to have a UMX and decided to have a BMX because of dense breasts and failure of standard imaging, mammograms, to detect my cancer. If you have a BMX or UMX after chemo, you may be able to avoid radiation and the dreaded expanders Check with your doctors and get a second opinion if you are not comfortable with the answers. Best of luck.
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Thinking about CyberCathy today, good luck and hoping for a comfortable recovery.
Hope everyone is doing well!
I'm just over 5 weeks post op and started PT to get better range of motion back. I had shoulder surgery several weeks before DIEP so I need some PT to get that mobility back as well. Other than that all is well and my incisions are looking so much better than I ever expected. Something that was important to me was the shape of the flap and I think that varies from Dr to Dr to it's an important question to ask if that's important to you. My next appt is in 5 weeks and we'll talk about whats next. I'm definitely satisfied with everything but if he thinks I could benefit from any fat grafting i would concider it, I thought stage 2 was inevitable but it’s not.Other than that i just have to decide about nipple recon, not sure if I'll do that or tattoo only. That would be several months out so I've got time decide.
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good luck today CyberCathy!!😀
TWills-so glad recovery is going well for you!
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Good to hear from you TWills. Sounds like your recovery is going well at this time. Tomorrow will be 7 weeks post op for me. I didn't start feeling like myself until the 5th week. I had a break in the chronic pain and I also started driving again. That was a huge attitude booster! LOL! I started on Anastrozole 10 days ago. So far I have noticed a headache. It feels like my head is in a vice and there is a bit of pressure. Tylenol nor Ibuprofen seems to help.
I was at a doctor's office yesterday. My BP was 151/104. That is way off the charts for me. I usually have very good BP...120/73 range. Could this be a SE of the Anastrazole and could high BP be the cause of my pressure headaches
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I have a date! May 30 stacked DIEP. Headed to PRMA. I am weirdly "okay". Must be all the alternative remedies working. 23 women ahead a me. Wow. Like big sisters showing me it will all be okay.
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Bella,
Yes. I took arimidex last March-May. It raise my normally low BP to almost 200/110 ? And it increase my cholesterol up 100 points. I was put on BP medication and when I discontinued the arimidex my BP and cholesterol went back to normal.
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Bella, it's going well but it's not been a walk in the park either, just better than I expected. I sure hope they can figure out your BP and get that under control, that can make you feel rough I understand.
Yay parachutes! That will be here before you know it:)
Cnewcom, I'm not sure I understand your question. You were given that option? DIEP or rads? I can't wrap my head around that but I might be reading it wrong. I had rads and that made DIEP the only option for me, mostly because I lost my expander to infection during rads so an implant was even more out of the question than it normally would have been. Anyway, I'm happy that it worked out this way and I'm satisfied as well. I would give yourself 6 weeks for recovery, that can vary though. Between the stomach incision and if you have flaps that's just a lot of internal and external incisions that you have to go slow and easy with. I'll be 6 weeks out tomorrow and I've felt pretty good since 3 weeks but I'm still taking it slow so I have the best outcome possible. Good luck with your decision:)
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