DIEP 2014

4acure - I hope you have had a successful surgery and you are recovering well!

Jen - good luck! You are in my prayers for a speedy recovery.

pzercher- Yay to a new surgery date! The date is approaching fast! Soon enough you will be joining us on the other side and I am sure you will be just as happy as most of the ladies on here. It is truly amazing what doctors are able to do nowadays. 

Jersey - I am sorry about the seroma but it sounds like it is a minor issue and I am sure you will get past it very soon. I am happy to hear that your incisions are healing well! 

Trish - Glad your disability leave was extended! I am currently filing a claim myself.

Aff - glad the massaging is giving you some relief. I hope the PT will help resolve the cording very soon! And I agree, it is interesting how every PS differs in terms of instructions for us. Mine seems to be rather conservative. She had me hospitalized for a full week and she does not want me to exercise/PT or do any scar treatment until I reach the 6wk mark. My recovery is going very well so I am certainly not complaining about her instructions

Yesterday I got to dress up the first time since my surgery 4wks ago to go for a very lovely birthday dinner with my husband. It felt so good to get out of the lounge wear I have been ever since surgery. I even enjoyed the 1hr wait till we got a table, sipping on a lovely cocktail and having some quality time with hubby. Last night also marked the first time I ditched my hat and showed off my 'military' hair style I had to touch up few bald spots in the back of my head but it was truly liberating to not wear a hat or wig. I have been wearing hats or a wig ever since Dec. The one thing I was a little bummed about was my swelly belly. I had bought a nice body hugging dress but when I put it on I looked a few months pregnant in it. I know this is rather shallow and a tiny issue considering what we have been through but the flat tummy was a rather big incentive for me to go for the DIEP flap. Now, I can't wait until it really is flat and not swollen anymore. Does anybody know how long it generally takes for the tummy to settle down a bit?

jmb5- I have a 14 yr old daughter and your news just broke my heart...how tragic.  Will be saying prayers for her and her family!

Ally

Jmb,

I am so sorry. You just reminded me of how glad I am that I got cancer not one of my kids.

14 should be a time of fun, girl talk, and getting ready for high school, not treatment. So sorry, jmb.

Jmb, horrible news I am so sorry to hear that, way to young. Really makes me so angry, damn disease!! Thanks for advice on the nipples, I kept mine so no nipple construction in Stage 2.

I had to go to see PS yesterday, I called in the morning as I feel like something is poking me in the left side all of a sudden. I also have a divot area that is getting worse. He made me come downtown immediately. Drove in a mini hurricane it was horrible out! The divot or dent he said he has never seen before which was scary to me. Its as if something inside is pulling the skin in. He thinks my swelling which has been extreme on that side isn't swelling but fluid. I have an ultrasound tomorrow and may have to have it drained or dare I say a little surgery to remove it. The poking I am feeling he thinks are the internal stitches and that whatever is in there is pushing on everything. I am feeling scared and sad. The divot area I just don't know how they could fix. He said its tethering from the inside. I am praying they don't have to open the flap to fix it. Its pulling on my nipple and screwing that up too. I was so looking forward to Stage 2 but he wouldn't discuss, said we have to deal with these issues first. Dang. His PA called today to check on me, they are all so nice but she said the same thing, they have never seen this happen. Has anyone else experienced something like this? The right radiated side I am having no issues with, its smaller and tight still but he promises it will loosen and soften up. Trying very hard not to let it get to me but it is. I was doing my PT exercises and massage, he said do nothing, so I am babying it and hoping it will be an easy needle drain. Though this surgery I have never cried, but I am close now. Keep telling myself it might be no big deal... hoping. I am posting a pic here, what do you all think?

Jmb, thank you to you for putting things in prospective for me. I will be praying for your friends daughter tonight. I really hope after the biopsy they figure out it is some benign growth. I had a friend who had a kidney removed, they told her it was cancer once out it was not cancer. Lets hope. Thanks my Ohio friend.

Lemon. So sorry!  That is odd looking. But pictures don't always tell the whole story. You are right,  it looks like it is being pulled in. Don't panic. Almost all these defects are fixable.  Let's get past finding out it is nothing to worry about and then he will fix it!

Jmb - Keeping my fingers crossed that her biopsy is negative. I can't believe they could say "it's cancer" from a CT scan (but of course, I'm no doctor).

Lemon - Thinking good thoughts for you, too. It's got to be scary when the PS says "I've never seen this" but hopefully it can be easily fixed.

Hugs to both of you from a fellow Ohio girl!

Hello all,

I just received a breast cancer diagnosis last week. I am also a 15 year Hodgkins Lymphoma survivor. I received chemotherapy (ABVD) and 20 rounds (4 weeks) of full mantle radiation when I was 33 years old. My oncologist had me begin yearly mammograms and breast MRIs when I was around 38 because I had and increased risk of breast cancer due to the radiation.

The tumor found last week was not seen on my mammogram or breast MRI. The radiologist who performed the ultrasound saw a small abnormal area under a healthy lymph node in my right breast and felt the need to biopsy it.

I saw a breast surgeon at the Cleveland Clinic yesterday morning. She feels that because of my Hodgkins/radiation history that a mastectomy of the right breast is the best choice for me. I am not a candidate for more radiation so a lumpectomy is not a choice for me. I feel strongly about prophylactically removing the left breast as well to prevent recurrence due to my previous radiation. I am about 95% certain that I want a double mastectomy.

I have an appointment tomorrow with a plastic surgeon to discuss reconstruction. I am interested in DIEP flap reconstruction. I have so many questions. I hope you can help me sort things out. 

How did you know that you found the right breast / plastic surgeon ?

Did you get a second opinion?

How was your pain after the surgery?

How long did it take you to recuperate?

How is your activity level now?

Have you had any issues with lymphedema? Are you doing anything to prevent it?

Did you have a physical therapist after surgery?

Thank you if you are able to answer these questions. I am overwhelmed not only with being diagnosed with cancer again but also the amount of information that I have received. There are so many things to consider. The double mastectomy and reconstructive surgery together is such a long surgery, it scares me.

The treatment for the Hodgkins was much more straightforward than breast cancer. Chemo, radiation but no long and complicated surgeries. I am so scared. 

Thank you for this discussion board. Interestingly I found a support group on Facebook for breast cancer after Hodgkins Lymphoma. It is so helpful to talk with other people who are having the same experiences.

Thanks for reading.

CRS29, so sorry to hear that you are here us.  This is a great place for information as the whole process is overwhelming and information overload! I copied your questions, and will answer in bold following if that helps.  I'm only 4 weeks out of surgery, but will tell you what I've experienced/know.

How did you know that you found the right breast / plastic surgeon ? I just liked him from the initial meeting.  I am not sure how it works in Ontario, where I am, but I am not sure if the OHIP (goverment insurance) covers second opinions.  But, it was all such a blur (found out after a breast reduction), so things happened quickly.  my uderstanding is my surgeon was one of the best in the province, and I was comfortable with him from the get go.  I was also a bit heavier going into surgery, then I should be (40 pounds or so) and he didn't balk at that.  He was very informative about the surgery and recovery

Did you get a second opinion? see above

How was your pain after the surgery?

I won't lie, the pain was pretty uncomfortable.  BUT, there is a hospital stay for 4-5 days, and they had me on several drugs that helped over the first few days at various times (I was pretty hopped up, so I can't tell you if they were overlapping, same time, etc), 12 hours morphine, short acting morphine, ibuprofen (I had headaches), tramacet, dialadin and a percocet (I think) at one point.  By, the time I came home 5 days post surgery, I was on tramacet only.  The pain was not as bad as the hospital, and I mainly slept the first week home aroun the clock, perhaps awake for 30 minutes or so, every few hours.  By the end of the secound week, I was sleeping through the night, and using tramacet during the day only, and the third week, I was just using tylenol extra strength.  Week 4 just ended yesterday and I rarely used it last week.  Things are still sore, especially if I do too much, but the pain for me, is a good reminder that I've done too much.  Also, I need to be able to drive, if needed, so I need to be off meds.  I tend to have a higher pain tolerance, and I've had 4 c-sections and a breast reduction to compare to.  they were both not as difficult as this surgery.   However, it gets a bit better each week. 

How long did it take you to recuperate?

I'm 4 weeks out of surgery, and still recuperating.  My PS told me 12 weeks, and I can see that.  I have periods of normal each day, but they only last for a bit, and I have to rest.  I am averaging 4 rest periods for 20-30 minutes each day or so.  BUT, I am able to drive now (albeit, I can't back up well, so I park with pulling through), have my kids at home, etc.  I have helped lined up, so I don't know how I would be managing if I didn't.  I have 5 kids, and am a single mom, so if I didn't have help, I would probably be overdoing it.  I have had meals since I've been home through church, and weekyl help with cleaning and some help running the kids around.  That has helped a lot.  It has been hard to accept help at times, as it isn't like me, but it has been needed.  I still have days that lay me low, and I wonder what the heck I've done, but those are getting further apart.   It is a long recovery.  I have a check up with the PS Aug1, and am hoping to be cleared for post surgery water exercise class.  I just do a bit of walking now.

How is your activity level now? See above, but it is improving a bit each week.  I tend to need 2-3 20-30 minute naps each day still.  But, some days are better then others.  Somewhere between 2-3 weeks, I felt like I turned a corner in recovery, and felt more me.  I think that is often the case around here.

Have you had any issues with lymphedema? Are you doing anything to prevent it? No.  I had a sentinal node biopsy each side, and only 2 nodes were taken, so my chances for this were low.  I haven't done anything to prevent it.

Did you have a physical therapist after surgery? My range of motion even early on, never seemed to be too much of an issue, so PT wasn't brought up.  I wonder if it will at 6 weeks checkup?  It took em a few weeks to stand up straight, and even that regresses when I'm tired.  I also had home health care for a week and a bit.  I don't want to say for sure, but most of us come home with drains, two in the breast and two in the abdomen.  My drains were removed, all but one in the hopsital, so I just had care at home for the one, and they removed it.  

Thank
you if you are able to answer these questions. I am overwhelmed not
only with being diagnosed with cancer again but also the amount of
information that I have received. There are so many things to consider.
The double mastectomy and reconstructive surgery together is such a long
surgery, it scares me.

The surgery is a long surgery and I found it scary as well.  If it helps, it's not the length of the surgery that the anathesiolost worries about, it is going under and coming out.  Because of the length of the surgery, I was fitting with compression pants to my knees, that inflated throughout surgery, and bedrest, to keep the blood moving and help move it around.  Not sure if that is normal, but what my PS did.  I also had an arterial lock put in in surgery, that they monitored my vitals through, as I was out for that length.   I had trouble talking for about a week after being intubated for that length of time, but it came back.  I had a cathetar for 2 days or so, until I was able to get up and go to the bathroom.   After surgery, I was wrapped in warm towels and a warm room in ICU, to help the blood flow to the flap.  I felt hot all the time!  They didn't let me eat or drink for the first 24 hours post op, to ensure that my stomach was empty, in case I needed to go back in for flap failure (My PS said that is 2-3 % or so).  They checked my breast flaps with dopplers hourly for the first 48 hours to check on the blood flow.  

I had a hard time deciding to do both, but didn't want to live my life looking over my shoulder waiting for checkups every 3-6 months.  I had DCIS in one breast, high grade and all contained.   I had other factors increasing my risk, but my MRI imaging showed cncer in the other breast.  Final pathology post surgery, confirmed it was the right decision for me.  I had a very high likilhood of getting cancer in the other breast.  Final pathology showed negative lymph nodes, good margins, etc.  So, I'm considered cured, although I have to go back for yearly monitoring to check on the few remaining breast cells left next to the skin.

I still have to have stage 2, wehn they do nipple reconstruction,  around Chrsitmas for me (6 months following initial surgery).  I won't lie, no nipples has bothered me, and still does.  Almost more so then losing the breast, some days.  Stupid perhaps, but how I feel.   It is a reminder each time I change or shower or what is different.  But, the nipple reconstruction pics I've seen are amazing.  THey really look the same.  Also,  the breasts feel different, still getting used to that.  there is sensation in the skin, but not so much in the interior.  Even the feel of material next to them is different.  But, on the plus side, I have breasts, and I think that has made my recovery easier, mentally.  Going in, and coming out with something helps.  I am only 41, so I am not sure if that affects how I feel about that.

lemon 

I have a small area on skin not near nipple that looks like an indent mark.

I asked and was told as swelling goes down there is some movement of flap as it settles and if it attached or scar tissue formed then u get the indents if it is soft .

If hard can be same but from fat that died and hardened.

I was told all fixable in stage 2. I was also told to massage gently with 2 fingers several times a day.

Please no stressing not got for healing

V

crs629 - I'm so sorry about your new diagnosis. I will answer your questions as they relate to me. I had a left UMX w/immediate DIEP.  Please keep in mind that everyone's journey is very different. If you go back and read the pages on this board you will read many different versions of recovery so please take these answers for what they are, our individual recovery stories. 

How did you know that you found the right breast / plastic surgeon? My husband and my sister came to all my initial consultations with me. They helped confirm what I already felt about each doctor. I had an immediate comfort level and trust with my BS. She was honest and matter of fact from the start which is exactly the style that works for me. It was not the same with my PS. I was somewhat restricted by insurance unless I wanted to travel out of state. Finding a PS that is skilled at his surgery within your insurance plan might be challenging. I had 3 meetings with him and about 200 questions before I knew I was comfortable with him. It is important to find a surgeon that does DIEP regularly with hundreds of these surgeries under his or her belt. 

Did you get a second opinion? I did not get a second opinion. I knew my BS was the one for me. 

How was your pain after the surgery? I took prescribed pain meds for a week then I was ok without pain meds but spent a good deal of time resting for the first 2 or 3 weeks. 

How long did it take you to recuperate?  I turned a big corner at about week 3. I am now 5 weeks post surgery. 

How is your activity level now? I am back to most normal activities. No heavy lifting or yoga or Pilates. Cardio is ok. I'm walking about 2 to 3 miles a day with some additional light exercise. 

Have you had any issues with lymphedema? Are you doing anything to prevent it? No LE but I am experiencing cording under my arm so I started PT yesterday. 

Did you have a physical therapist after surgery? I just started PT yesterday and it's great. 

Lemon, bless your heart. I know they will figure it out. You will be in my prayers.

Andrea - I think you asked about the radiated breast. My radiated side looks even better than my non-radiated, skin/nipple sparing side. My PS gave me a regular flap on top of a baby flap because my radiated side was a little concave. It's so soft and I can't stop touching it. Weird, I know!

Regrets - I have no regrets. I have friends that have had various other reconstructions. They are all in awe of my extended DIEP breasts. 

crs629 - 

How did you know that you found the right breast / plastic surgeon? I loved Dr. Massey immediately. During our initial conversation she was very knowledgable about my situation and had a plan. She knew the barriers and told me how she would address them. She has a tremendous amount of experience.

Did you get a second opinion? I had one scheduled, but cancelled after talking to my first PS.

How was your pain after the surgery? Manageable.

How long did it take you to recuperate? At 5 weeks I could have forced myself to resume normal activities, but chose to take it real easy for a while longer.

How is your activity level now? Before stage 2 it was back to normal.

Have you had any issues with lymphedema? Are you doing anything to prevent it? Dr. Massey takes lymphedema very seriously and we take precautions even though I do not have lymphedema symptoms right now. She gives all of her patients education and I would recommend you getting education too.

Did you have a physical therapist after surgery? I did, with a PT that was also a CLT. She helps me work hard and pushes me just enough to get my ROM back.

Good luck and keep us posted.

CRS- Welcome to the thread, lots of good info here. I am a Cleveland Clinic girl, they are wonderful. My BS was Stephanie Valente and PS is Graham Schartz. I knew I found the perfect pair immediately. I went to a local hospital in Lake County for my BC TX, switching to the CC was the best move I ever made. Both excellent and the care I have received there has been top notch. I had a bmx with immediate diep. I am still recovering at 2 months but I am overall good. I am in PT but only because I have lymphedema but I had it from the SNB previously.

Thank you everyone for your prayer and well wishes. I had a ultrasound today and there is pocket filled with fluid in there. They didn't know if that is what is causing the divot but there is definitely a pocket that needs to be drained. PS is to call me tomorrow for the next step. I feel a bit better but its just discouraging to have things going well and have a hiccup. I am not sure how they can fix this but as my DH said if they can do a face transplant at the Clinic they can fix this! He is right.

Janet, Happy Birthday to your girls!!

Gila, another Ohio Girl..(HUGS)

JMB, I am glad she at Akron Children's that is a great facility. Please keep us updated on how she is doing.  I am not a doctor but without a biopsy I am not sure how anyone could say with 100% certainty what it is. Stay positive. Your family is in my prayers. I hope you are feeling better. How is your swelling? Can you tell you did Stage 2?

Love to all..