DIEP 2014

Morwenna, I've heard several different stories about ongoing monitoring. I think it all depends on your oncologist, type of cancer, stage, etcetera. I went to an oncologist at the a Seattle Cancer Care Alliance that told me that I have done everything possible to reduce my risk.(mastectomy, hysterectomy). I just need to be aware of any changes with my body. My local oncologist agrees. Talk it over with your team and voice any feelings or concerns you have.

Hello DIEP ladies, dropping in to say Happy New Year to you all! I'm about 7 weeks out from surgery and have not had any complications but recently started having odd aches and pains in my left thigh/hip/low back/butt area. Seems a bit like sciatica which I've never had before but am familiar with the symptoms. Also seem to have minor aches all over at times. Any one else experience these odd aches this far out from surgery?

jmb5: Thank you so much for letting me know you experienced the same symptoms. I thought I was the only one! You have no idea how much better I feel!

MEG: It sounds like normal aches and pains due to limited mobility after Stage 1, but of course check with your Dr.

Lisa

Hi Wintersocks - my DIEP was on December 8 and I'm pretty happy with my new breast - it's a little smaller and higher than the other but I know the PS plans to take care of that in Stage II. I can't feel anything (ladies, does that improve with time?) but it's smooth and no bruises. My only problem is the very sharp nerve pain about halfway between my right hip and pelvis. It's several inches below the incision and there aren't any lumps or bruising there but oh, does it hurt! It comes and goes and putting a little preessure on it pretty much makes it go away. I'm hoping it gets less over time?

I called the PS this week to check about the "binder" (elastic velcro wrap). I thought some ladies said they wore it for 2 weeks so I started wearing it during the day but not when I sleep at night. The PS said to wear it all the time for 6 or 8 weeks - is that normal? It's a little uncomfortable but not a big deal - that just sounds really long.

Good luck to all - it's been pretty quiet here but I imagine it will get busier now that the holidays are over with. Happy 2015!

Saltyjack/Bev

I started getting really sore and irritated skin along my bra line. I slept all night without any compression garments, bra or underwear and it felt so much better.

I am 23 days post Stage 1. We called the PS office today and they said I could stop wearing them now instead of waiting until day 28. What is your experience with Stage 1 compression? Also I am beginning to realize that stage 2 is a bigger recovery than I initially thought and I am thinking it sounds like full body...Breast to leg compression is needed for quite some time following stage 2. Is that accurate? Would love to hear folks experience with it.

Woke up feeling super tired and in pain today and just feeling like I really want my old life back. When does this start to shift?

Take care

Julieho

no binder for me at all after stage 1...2-3 weeks after stage 2

My scars are tiny, thin, red and disappearing

Thanks, ladies for the input. Yep, I sure am glad that I'm wearing the binder during January instead of our 100-degree days in August! I started wearing a camisole under the binder right away - not so much worrying about irritation as that I didn't think I could wash it and thought it would be pretty nasty if I wore it right next to my skin for a month or more. I'm with you, Julie - I didn't realize that Stage 2 will be just as long/intense recovery as Stage 1. Oh well.....the end result will be worth it right?!

Saltyjack/Bev

Thanks so much, JMB, Sassy and Meg - all your comments, encouragement and information help alot (especially thinking that the worst is over with Stage 1!). I know it will be up to my PS (and me to a lesser extent) -but what do y'all think about timing of Stage 2....I had Stage 1 on December 8 and will see the PS again on January 14. My husband and I are going on a Bike and Barge trip in Holland the first week in May. The barge will let us off every morning with the plan (goal anyway) of biking 25-30 miles to the next dock. A couple of the other wives and I have already decided that if it's 50 degrees and raining, we'll explore public transportation options....but knowing I want to be in shape for that kind of trip, do you think the PS will even consider Stage 2 this spring or will he say to wait till we get back? I'm clearly a planner.....

Thanks! Bev

Saltyjack, you are definitely going to have to talk about your trip with your surgeon. I have been told to not work my abdominals at all for three months! No yoga, no myofascial release, massage to foobs, etc. Then throw natural healing time on top of that. It sounds like you are going to have to time it just right. Sounds like a fun trip!!

Hello ladies,

I'm a little over 3 weeks post stage 1. Have been feeling down, still reeling from an unwelcome surprise post op. The pathology report came back showing stage 1 invasive disease. So much for high surveillance. It did not show up in any of the screening tests I did in the past 6 months. I spent a couple of days beating myself up for waiting so long to do the surgery. It even surprised my surgical onc. I was so worried that I would need radiation and disrupt the flap. He assured me that I will definitely not need radiation since I had a mastectomy. I will be seeing a MO soon. I'm waiting on the oncotype DX score to see if I will need chemo. I know I should be grateful that it was caught at an early stage and that it could have been much worse. I'm just so disappointed and scared. I had hoped I could move on after the surgery.

As for the recovery itself, its coming along pretty much like you ladies have described. The worst thing for me was the severe constipation (worse than the surgery). The wounds are healing nicely. The drains all came out 1 week post op (I went home with 5). Still wearing the abdominal compression binder. Was told I would need to wear it till I see him 1 month post op. I did not have any compression bra but was told I could now start wearing a sports bra. Is it normal to still not be standing completely upright this far into recovery? I'm still having the lower back pain when I walk long distances. Also did any of you experience the constipation? How did you deal with the after affects (it hurts to go)?

Bev, Julieho, and witersocks, I'm right there with you on this roller coaster called recovery! It certainly has its ups and downs. Wintersocks, I haven't experienced any lumps or bruising. That doesn't mean its something bad. We each heal differently. Let us know what the surgeon tells you.

I wish you all a healthy, healing, happy new year!

Caligirl, the constipation is normal. The hospital I had both Stage 1 & 2 with started giving me stool softeners the day after surgery to get ahead of it, and continued for a couple more days. I remember the back pain. I was trying to walk more upright because it felt better on the back, but in the same turn my abdomen wasn't ready for that. I think it was 2-3 weeks before that all subsided for me. I did not try to walk long distances after Stage 1 at all. Stage 2, I could walk much further and did some serious hiking through the French Quarter doing Christmas shopping! Hang in there. I'll be praying for you.

Hi, Caligirl. So sorry about your path results. Re: the constipation, I have found that the stool softeners don't work for me. However, it was impossible to convince the hospital to give me anything different except that they did give me a cup of hot prune juice which I think only produced gas and bloating. The only thing that I've found that works is Miralax. It will take 2-3 days to work. I usually try to do a few days before a procedure too. I mix it with pineapple juice, and I can't tell that it's there. I wish I had broken down and used it during chemo. As far as the pain associated, I don't know what to say other than maybe try a glycerin suppository.

Re: standing up straight, I was allowed to asap and pushed myself to do so because of the lower back pain that I could tell was going to come on if I didn't.

The C issues of compression and constipation.

My PS was adamant about the compression after stages 1 and 2. After DIEP the compression really felt better during the day when I was moving about or I would end up looking pregnant by the end of the day! After 4 weeks he said I could just wear compression at night if it felt ok and didn't swell too much during the day. I wore Spanx. After stage 2, it took about 2 months for the bruising to fade (I bruise quite easily) and compression really helped during that time. After week two, I was able to switch from binder to Spanx.

Miralax was what helped me "move." I didn't need it long after stage 2 because I didn't take pain meds but for a few days. Constipation after DIEP and accidentally pulling on a drain were the worst pains ever.

Walking upright after diep took me about 3 weeks.

My stage 2 was 4 1/2 months after DIEP. I had a lot of work done ...extra skin from breast sides, nipples, ab incision revision, fat grafting and "lady part" lift. In spite of all work, stage 2 was not bad. It was only 3 hours and was day surgery. If I wasn't such a "bruiser," I think it would have been much easier. My PS said I bruise more than most.

Weighing in on nipples. I cannot say enough about how wonderful they are. At first, I thought it was a mistake because they were so huge. After about 2 months, they looked just right. I thought the same about the tattoos because they looked awful at first...pepperoni slices. On day 10, they looked wonderful.I will still need a bit of touch up color added and I continue to use med from dermatologist to fade the scars around the crop circles. I don't care about the scars on the under my arms or belly but want those on my breasts to fade more.

SaltyJack, check with your PS about your trip. I was able to start working with my trainer and was riding my bike and walking 3 miles a day at six weeks after stage 2. My Ps encouraged exercise. My trainer wouldn't let me do sit ups til week 8 but didn't have any issues with anything else. It won't hurt to ask.

CaliGirl, getting your results at the 3-4 week slump is a double whammy. Sorry about it.

Julieho, you are in slump time too. Don't worry so much about stage 2. I only had belly to bra compression because I didn't have any liposuction on my legs. A friend had lips only on her legs. It is something you and your PS will discuss before stage 2.

I'm nearly 10 months post DIEP and am 100% positive that it was the best choice. Yes, I miss the old girls and probably always will, but I accept the new normal. My life is good and I can do anything I did before. Others have said this is a marathon, not a sprint. There were many days I had to remind myself of that and when my PS did, too. It is thrilling to say that nearly everything is behind me. I am waiting til spring for the tattoo touch up because that's my choice.

Those who are just past DIEP, give yourself time. We all run this marathon at our own pace. You will get to the finish line and revel in the new you