NOLA in September?
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Thanks Jane. I didn't know if the sadness had to do with not being my normal holiday self or the frustration with not feeling good and carrying around my lead boobies. Tonight they just hurt. Not enough I think to take pain pills but just tired of them. Kinda like in the 9th month of pregnancy when you just wanted to feel normal again. Your words encouraged me knowing that in 3 weeks, I will feel better.
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Hi there, I know that some of you mentioned physical therapy and how much you benefitted from it. I think I thought that since I was very athletic -- strong and flexible -- before breast cancer, I wouldn't need PT. Also, received no recommendations from the center regarding PT. I just started with a new breast surgeon to follow me... She's recommending breast MRI's and just got one authorized by insurance. But they will NOT authorize the shoulder MRI that she wants me to have; I can barely lift my right arm and the shoulder is quite sore. So I made an appt. with a orthopedic surgeon since the insurance company wanted x-rays and a more thorough exam before a shoulder MRI. Two days before my appointment, my knee started hurting. By the time i saw the orthopedic surgeon, I
could barely walk. The insurance company authorized a knee MRI, but still no shoulder MRI. On Christmas Eve, I had knee surgery. Dr thinks it's fragments from a childhood joint problem. And possibly bones weakened from chemo (as cancer is the gift that keeps on giving.) He said that my shoulder is clearly frozen and I'll get Pt for knee and shoulder. My current scenario is really annoying because it's really hard to use crutches with a weak shoulder and my post Stage 2 breasts. In any event, my new local BS says that ALL of her (mastectomy/reconstruction) patients begin PT after surgery.
I'm now thinking that would have been a good idea and am passing on that recommendation. Sorry for rambling on... I'm starting to sound like my mom & MIL with all of the medical problems!0 -
as ive had radiation have been told by breast surgeon that implants are not an option for me and ive thought about it and are going to try implants regardless, worst scenario they go hard and have to have them removed. so wont be having reconstruction done in public system will go private.
and regardless of genetic results which still waiting for im going to have the non cancer breast removed. obviously for my life's sake but also esthetically, that being they are the same...hoping we can keep the nipple of good one.
im also covered privately and the reconstruction will not be classified as cosmetic so hopefully there will be no out of pocket expense.
just recently found out there is new way to reconstruct with expanders.
__ Quote ___ surgeons have been using Saline filled Tissue Expanders to expand the submuscular pocket following a mastectomy to create the space to ultimately insert a permanent prosthesis. This involves placing the expander under the pectoralis major muscle; which lies under the breast; at the time of the mastectomy. The Tissue expander is initially partially inflated and then the patient comes to the surgeon’s office and has 60mls of saline injected into the expander until the suitable pocket size is created to allow for the ultimate prosthesis to be placed. This injection process currently occurs a number of times and takes between 3-4 months and then the patient has a second operation to remove the expander and the prosthesis is inserted. Recently a new type of expander called an Airxpander has been developed and is currently undergoing a clinical trial at the Mount Hospital, for 40 patients. The Airxpander has a carbon dioxide (CO2) cylinder and a receiver unit inside its central chamber; the patient uses a hand-held remote control to inflate the expander with a maximum of 10mls of CO2, up to three times per day to create the correct pocket size. This process requires no injections at the surgeon’s office, the patient inflates the expander at home and at their own level of comfort and the infection rate is much lower. The average time to completion of expansion in the current trial is 15 days. The Airxpander is currently undergoing a similar trial in the US and it is expected to be widely available for surgeons to use in a few months time.
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liv- I've heard about the Airexpander, sounds interesting. You get to control the expansion. Are your doctors in a trial to use them?
jenlee- good luck with the frozen shoulder, I'm sure PT will help. Sorry it took so long to get a scrip for it. Just keep moving, however you can, and your body will get back to normal sooner than you know. I'm not sure PT is recommended directly after flap recon, it seems like it could cause some damage. But maybe after the 6-8 week recovery period...?
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I've recently joined the DIEP 2013 (waiting for) list, but have read every one of the messages on this thread. Currently having physio on one of my shoulders, as I want to try to have that issue sorted out before the diep surgery comes along. Diagnosed as a shoulder "impingement" which is similar to frozen shoulder. Having something called IMS which seems to be helping significantly. There is a wide range of treatments that come under the "therapy" umbrella. I agree that probably everyone undergoing reconstruction would benefit. Therapy doesn't have to mean working out the surgical site, it can mean finding ways to help relax and balance the "other side" of the body. From what I've read, diep takes a toll on the whole body, so I will be asking my surgeon when I finally get an appointment for physio referrals.
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Jane, I experienced the suture popping a few times. It's crazy. I kinda liked it!
Jenifer, so sorry to hear things are kind of crappy right now. PT will make a world of difference. I'm a huge proponent of PT after surgery. I went into my initial surgery knowing PT might be needed. My mom's pain doctor wrote a whole chapter on post mastectomy pain treatment. Since I am very flexible I was surprised when I lost range of motion after mastectomy. I started PT about 5 weeks after surgery. I had mentioned my range of motion issues to the Center and they offered a PT script. I still do my stretching exercises a year and a half later, as I tighten up so easily. Cancer is most certainly the gift that keeps on giving!0 -
I had shoulder impingement a couple of years ago, and had a cortosone shot and PT. It went away and I haven't had a problem since. Apparently frozen shoulder/impingement is very common with people as they age. The shoulder socket gets sloppy, and lack of movement is what can bring it on. So after surgery, lack of lifting your arms can cause it. But have faith, a shot and some PT and take care of it. It did take a month or two, but is 100% gone.
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@bdavis.....had to laugh, thanks!
. Although you are probably quite right in the "comes with old age" theory (I am 62), I prefer to chalk it up to the physical stressors of prepping and painting a 4 bedroom house, moving to a condo and taking up golf! I have never had strong shoulders, and I know I have been "guarding" my right shoulder as that side is dealing with a capsular contraction and I hate the feel of the implant when I use those muscles, so I likely overused my left, hence the current issues.Speaking of golf.....does anyone have any experience with how long after a diep they are allowed/comfortable with golfing again? I keep hoping the surgery might help my game!
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nihahi...
I was 46 when I got the shoulder impingement... and am very active, but I guess there are specific moves (or lack thereof) that can cause the shoulder issues.
I had MX/GAP/DIEP in the summer of 2011 and was golfing summer 2012. Only because of timing. I could have golfed by October I believe, certainly November, but I wan't going to golf in Nov... and just didn't in the Spring... but golfed everyday on vacation this past July. Sorry, the game wasn't better, but not worse either.
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For anyone in the Seattle area!
Update! Eva suggests we meet at "Rachel the Pig" in Pike Place Market. Anyone in the market will know where that is. Everyone is invited of course. Hope to see you at 11:30 on Saturday.0 -
I am looking forward to getting back to golf. I stopped playing several years ago because of the implants and capsular constriction, plus I could feel the little leaks when I swung. So, Betsy, I guess at 7 weeks I am too early to try hitting the range?
I had a frozen shoulder right after my MX at 33. PT resolved the problem and helped build strength. Now at 60, I am I worried about frozen shoulder after DIEP. It didn't happen, but I have a bit of a problem with the tendon that runs at the front side of the armpit. I am working on it - stretching, etc.
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You'll have to let me know how the golf goes for you this summer! The capsular cx thing is a real pain, I cannot wait to get it resolved. Last winter it really affected my arm while I was cross-country skiing. I haven't been out yet this winter, as I recently had surgery on my nose for skin cancer, and have found out the "new nose" isn't ready for the cold yet. I'm hoping for a warmer spell soon, so I can get out snowshoeing on some easy trails that don't need "poles". I really, really find being outdoors is the best "happy place" for me, and miss it so much! Sheesh.....implants.....nose.....shoulder......more than ready to turn some of this around!
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Marty... I think 7 weeks is a little early for golf. We aren't really comparing apples to apples though... I had my MX in July 2011 with my GAP flap and then DIEP in August. Had I just had DIEP, and MX years ago, the healing may be different. But even with the MX, GAP and DIEP, I could have golfed in November. Instead, I was having stage II. But six weeks post stage II I was back at the gym and a month later downhill skiing. Personally, I would give it 8 weeks minimum so that healing has had a good shot, and then base it how you feel. If you have pain, then don't do it. And most importantly, I would ask the doctor.
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From everyone's experience with fat graphing, when do you feel secure that it took? And at what point do you know what is there will stay?
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Great question Grt42btexan,
Dr Kline said I needed to wait 3months, and at that time what I had is what I would keep.
I was wondering if there are any tips or precautions to take to ensure that the fat stays. And also if it does not, is a second try worth it, or will the same thing just happen again? I am 3weeks post op today and I am pretty sure quite a bit has reabsorbed from my recon breast.Is it too soon for that to happen? My butt donor site I am not sure yet as I am still wearing compression. Hope someone chimes in with their experience.Thanks ladies
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Dr M told me a few weeks after leftie died and was removed that rightie would be good at that point...that was about 4 weeks post diep. She said it would take something major to make it fail like a bad fall, car accident or the like. Maybe she said that to allay my fears but I loved hearing it just the same. Rightie is now growing hair which tells me that she is here to stay!! Only 9 weeks til I return to NOLA for the GAP on leftie...let's hope this time she stays with us!
My belly wound is healing wonderfully. It is already less that half the size it was when the wound vac was put o 10 days ago. Will find out Wed whether or not I have to continue Hyperbaric treatments to help the belly wound along. Hope not...it it so time consuming!
Maggie-2
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Maggie, great news about the wound closing!
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For fat grafting, I was told not to use my upper body muscles, not to flex my chest muscles. So after fat grafting, I waited 6 weeks before really doing anything. And then I went back to the gym. So I would say the best bet at avoiding loss is to not lift things heavier than 10 pounds, not to sleep on your stomach, just pamper the areas.
Maggie.. avoiding flap loss is similar, but less likely. If you don't fall on the breast or traumatize it, it should be fine. Fat grafting is more delicate.
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Jenifer- Sorry to hear about all you have been dealing with. I had been dealing with a shoulder issue on/off for years and after my Stage 1 it started to bother me again. I ended up speaking with Jen at the hospital. She was on of the OTs there. She gave me some exercises but said if I needed a PT script to let her know. I found between those exercises and using a chiropractor with massage therapy (someone who is trained in treating women with breast cancer) it made a hugh difference.
Jane123- You are right...I think it is the lack of endorphins right now. I have been walking and noticed that is helping a bit. I love coconut water so I have been trying to bump that up on top of water. NOLA mentioned coconut water would be a good choice post surgery. Thanks for your advice. I hope you are doing well.
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Audrella... was that your post on Ask the Doctor about fat necrosis on a 1/3 of the breast? I have been there. He did address it at stage II, but it did not fully resolve the problem. So I am going back this month (15 months post stage II) to have the tissue removed and having a rotational flap.
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Bdavis....very observant! Yes, that was my post. I wasn't feeling the love over here so I posted on the ask the Dr. Forum.
How long did you wait for your first stage 2? Mine is scheduled for February but now I'm wondering if that might be too soon? I really wish I were local so I could have Dr. D take a look.0 -
Betsy, could you explain the rotational flap? How does it differ from the DIEP and gap flaps?
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Audrella... I had a bilateral GAP flap in July 2011... then had a problem on the right side and had a DIEP on the right side only one month later. At that time, I asked Dr D if he wanted to address the firmness on the left since he was taking fat out and putting me under anesthesia... but he really thought it would soften. So even at a month post op I knew it was too firm. Three months later (so four months post GAP flap), I had my stage II. Going into surgery, I would say that about a third of my left breast was firm... as you look at the left breast it was firm from about 12:00 to 5:00 (outside). At stage II in November, Dr D did his thing (reverse lipo or something), and after healing it has improved, but I still have a plum sized amount of necrosis AND lost volume. So my left breast is definitely smaller than the right. I would sen pictures etc, and his suggestion was to wait a few months and then address it. So I went down in October for a consult, and even though he thinks he could add volume to what is there, I am concerned about further shrinkage as the necrosis might reabsorb, and I so I asked for another flap. So 15 months post stage II (Jan 30) I am having him remove the necrotic tissue and he will use the fat under my armpit and lat area to fill the area (a rotational flap). He will also remove the fat from the other side for symmetry.
I don't regret having my stage II 3/4 months post DIEP/GAP, as it was no cost to me due to fulfilling my OOP maximum in the summer. Plus he revised my donor sites etc. And for many or most, it may have fully resolved the problem. But since it didn't totally work for me, I chose to put A LOT of time between stage II and IIb to assure myself that all swelling was gone, and he would know exactly what he was dealing with. Also, he will give me another butt lift as the first one wasn't enough.
You don't have to have your stage II in February, as it doesn't affect your insurance. You could wait til June and that would leave you enough time for a December Stage IIb if need be... Or you could have the surgery in Feb and see how it goes and have a IIb in December also. OR you could wait til 2014, giving yourself tons of time. Certainly by then you would know exactly what you are dealing with. But there is no guarantee that you still wouldn't want one more revision. My situation was a clearer case, as I had my insurance to consider. Having my surgery this January will cost me... and I planned it in January just in case I need another surgery later in 2013.
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Hey look what popped up on my MSN home page this morning!
It's our own Eva!
www.topix.net/health/breast-cancer/2012/12/redmonds-eva-moon-turns-to-music-to-face-cancer-risk
Go Eva!
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Beverly, Nordy, and Eva -- I am so sad to miss you at Pike Place today! My husband came down with a brutal stomach flu last night, so we are quarantining ourselves until it moves through. You have all been so helpful in my journey to healing this year, and I was really looking forward to thanking you in person. Have a great visit!!!
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Marty.. I guess we were posting at the same time. I haven't had the rotational flap yet, but Dr D will extend the incision from under my breast about 2 inches towards the back, and take the fat under the armpit and lat area and flip it around to the breast. So it is similar to a lat flap, but without the muscle and no scar on the back. I will know more when I have it done. I have heard though that one person ended up with a much longer scar than 2 inches, so maybe it isn't a one size fits all surgery?
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Maybe I should send in some pics...although the left breast is actually larger than the right and it doesn't look abnormal at all, just feels abnormal. The firmness is a band right across the middle from inside to outside. It's worst right in the middle and gets smaller as it spreads to each side. It's almost football shaped.
Insurance IS an issue for me because things at my job are not stable...everything may turn out fine in the end, but lots of the partners are leaving and it has me worried that something is not right. Things may turn out just fine, but I can't say that for certain right now. My current insurance is phenomenal and if I have to change jobs I probably won't get the incredible coverage I have now.
February 20th is still 2 months away. Maybe it will do some softening between now and then. If it doesn't my hunch is it probably won't. I do have other areas that were once hard and have softened up some in these past 10 weeks, but not this one.
Who should I talk to at the Center about this? I figure a phone call is in order at this point.
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If Dr D is your doctor, I would email/call Laura... Based on what you say about the insurance, and as you describe the problem, I would go ahead with the surgery. You have the odds with you that it will work out... especially since its the larger breast. That way, if you need a small surgery later it will just be a tweak, not as expensive.
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I think that's what I'm going to do. Just wait until I go down and see what Dr. D has to say at that point. It's extremely difficult for me to not have a plan or to be putting a plan in place, but I really don't have a choice in this instance.
I do wonder if he will be able to do the nipple reconstruction because right in the middle is where it is the hardest.
It's going to be a long 2 months until the end of Ferbuary! I hope my anxiety stays in check.
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I am sure he can do the nipple... he did mine on my necrotic breast.
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