Charleston Bound, part 2

cascader · July 2014

Thanks Catie and Pink. Going to CHS was my first thought too, no way I can make that happen especially now. We took a huge financial hit with the fires. So I am wondering if anyone else has ever had this done on their recon side???? I thought I remembered someone maybe Dr Masseys patient?? Nola girls?

The lump is hard but dr Baron said the walls do not present as necrosis , but doesn't mean it is not. I am thinking about doing nothing for 6 months and checking again at that point. Opinions please??

lbrewer · July 2014

I would ask dr k what the chances are of a needle biopsy actually harming the recon. I would bet its small since needle aspiration is not all that invasive. Is it a fine needle biopsy or a core biopsy? Removal of the lump would be different but I bet dr k has good advice! I vote no on waiting tho. Even the stress of the wait and unknown is bad for you. Unfortunately far to many women (like me!) wait and then regret the decision. Wishing you had done somethign earlier REALLY stinks!

Catie2013 · July 2014

this could be totally out in left field, but if the waiting prior to taking the breasts, ducts etc was scary because it could go to the lymph system and mets could happen - what is the course of a lump that has no such path to get to the rest of the body AFTER a SGAP? Not sure if my thinking is reasonable or not, so certainly a question for either an oncologist, surgeon or more sure with Dr K? Might shoot him an email, Cascader and see what he thinks you should do.

I just had a FNA (fine needle aspiration) of my thyroid where a node has a suspicious blood supply and has grown in the last 6 months since the last ultrasound. It was a needle guided "biopsy/aspiration" where they took 3 samples in different locations while the ultrasound showed the area for the Dr to put the needle in. If the needle biopsy is similiar, Cascader it's a piece of cake compared to what you've been through already. But if it were me, I'd check with Dr K as to what precautions to not damage the flap they needed to do.

I have a firmer than the other area section in the cleavage area of my SGAP, I'm thinking it's completely normal probably from the fat grafting area but am going to have Dr Baron check it out in 3 months when I go for my yearly appointment with him in either October or November (hoping to get enough people who need check ups to come at the same time for our first Flappers reunion of Dr K and/or Dr Baron. Might you be able to come then?

Like I said I'm no surgeon or medical person!

Hugs

Catie

deann_nd · July 2014

I am looking at flying in for flying in for GAP surgery from Noeth Dakota and was hoping someone could tell how long on average that I would need to stay in Charleston?

PinkHeart · July 2014

Deann,

Welcome to Charleston! So sorry you are on this BC journey, too, but you've definitely chosen great doctors who will be taking special care of you along with super nursing and office staff. The hospital is new with all private rooms in a nice suburban setting. Hopefully you can come a few days early to enjoy the beaches, history, and great restaurants.

Dr. Kline asks his patients to plan on staying a week after surgery at which time he will see you for post op appointment and afterward you can leave. Plan to be there a day or two prior for pre-op appointments with the doctors and the imaging appointment. .

When is your surgery?

GointoCarolina · July 2014

Hi,deann_nd, I am going for delayed bi SGAP from New York.I am flying in on the 9th of August,surgery is the 12th.The day before surgery is the MRA and pre op visit with Dr.Kline.My surgery is Tuesday and if all goes as planned I am released on Saturday the 16th.My post op will be either the 19th or 20th and I am flying home on the 20th.I am going down alone,but am lucky to be able to stay with my cousin before and after surgery.A friend is flying in to come home with me,Dr.Kline will not allow you to fly home alone unless you stay longer.It finally all fell into place for me and it will for you too.I had many consults before I talked to Dr.Kline and knew that it was worth the expense of traveling to go to a doctor I felt so comfortable and safe with.Cascader,hope you are doing OK...do what is best for your own peace of mind.....if you are fine with waiting,do that.....if you feel the need to know,have the biopsy.....could you have an ultrasound?...I have been here quickly reading about you all,thinking of you......frantically counting down the days,yesterday I decided I was going to cancel the surgery,no reason,just having a melt down thinking of all the parts that for me are scary......did anyone else have doubts this late in the game? Some days I feel like I used up all my extra courage during chemo and not sure I have enough left for this....this morning I was freaking out because I weigh more than I did last year at this time....I am about 20 pounds overweight....anyone else overweight going in to surgery? Seems like most of you are thin????

LAstar · July 2014

Cascader, did you have a mammogram on your DIEP breast? What about an mri? I had an mri to examine some lumps that developed above my failed flap. The local docs wanted to biopsy but my NOLA bs determined that they were just oil cysts from the necrosis. Mine start at the edge of the flap and go up toward my neck. They are sore sometimes. I'm looking into a January DIEP to correct it. I hope you find resolution soon! Since its been 2 years since your surgery, I would think that a biopsy would not be a problem. My bs said that eventually the blood supply repairs in our flaps so that we do not rely solely on the original blood vessels connected during the surgery. Best wishes!

cascader · July 2014

Thanks all. LAstar, I had an ultrasound only and a needle biopsy is being suggested by Dr Klines bs Dr Baron. Haven't heard anything about oil cysts, are they hard ?My local docs weren't sure.about any of this, big surprise. Catie, I understand what you are saying about pathways, and really can't imagine it being anything serious. I know a needle biopsy are easy, I think it is just having to deal with this again after so long. I get that this is the way life is now, but I don't want it to be ! Waaaah! Anyways, think I am still in shock crisis mode from the fires and just don't want to deal with anything else right now. I guess I will do the right thing and call my onc today to discuss.

Panda, do NoT cancel, you will be so relieved once you arrive in CHS.

Catie, I am going to try and make it back , as soon as you know the dates let us know.

Gotta run, going to be late for yoga.

Thanks ladies

LAstar · July 2014

The oil cysts have that dreaded pea feeling, pretty firm.

So sorry to hear that you are dealing with fires there. I looked at the Pac NW fire map and had no idea there were so many on the east side.

lbrewer · July 2014

Going,

Definately not all of us are THIN! I'm about 20 lbs overweight as well and everything is fine. Some of the SGAP ladies have the surgery because they don't have enough tummy for a DIEP. Others have different reasons. But for once, an extra 20 pounds may be a good thing! There will probably be additional fat grafting after they move the fat originally and it has to come from some place! I know how stressful it is; I ended up my bi-lateral mastectomy only I did it the hard way. One side at a time ( a recurence). The drs in CHS are great and if they had ANY concern at all, they would have told you. I think it actually makes it easier on them!

lbrewer · July 2014

interesting article on nutrition:

http://paidpost.nytimes.com/ctca/integrative-cancer-care-treating-the-person-not-the-disease.html?_r=1#.U9j0hCiTE25

PinkHeart · July 2014

Surgery August 7th and Getting nervous!! More than ever before.

Tomorrow is my last day of work until September 8th. I was unemployed during my first five surgeries with Dr Kline, so I'm really hoping all goes smoothly with recovery to return to work feeling good. Feel kinda quilty going on med leave. Of course co-workers dying to know why. 😊

Will spend lots of time beach walking to calm my nerves. And evenings with my friend cabernet.

deann_nd · July 2014

thank you everyone for the information. I haven't set the date for surgery yet. Dr. Kline told me to be at my ideal weight when I come so I'm still working on losing some weight first. Sorry to re-ask answered questions but what sort of clothes or items should I bring with me? I will be traveling down alone with family coming to stay with me when I get out of surgery.

lbrewer · July 2014

button up sleep clothes are important but a hard thing to come by. I stole a couple of my husband shirts. But you could buy a couple men's soft flannel button up shirts. Ear plugs, eye mask are good for the hospital. I bought a camisole called softtee that I liked better than the one east coope gave me. Then again they didn't have my size!

ketch · July 2014

I'm overweight. I've lost some, but not all. I'm hoping to get another 20 lbs off before my next/last surgery. Kline is a stickler about weight...he wants you as healthy as possible. I was still overweight for stage 1, but was the healthiest I'd been in years. I'm hoping to get back to that point, but this hematoma that I've dealt with this year has prevented that. So, you can do DIEP stage 1 overweight, but I would suggest being in good shape.

It's been a month since the stint in ICU with the hematoma and cellulitis. I am feeling better and stronger each day--physically and mentally. I am looking forward to ridding myself of the wound vac and then getting back into an exercise routine.

brca35 · July 2014

deann,

I had my diep 2 weeks ago. The one thing no one mentioned to bring but I though would have been super useful is a stool. They are only $5 at IKEA and can easily fit in a suitcase. They are great for supporting your legs when sitting in a chair so you don't have to engage your stomach muscles. I also had a tough time getting into the hotel bed because it was so high. I ended up turning over the garbage can to use as a stool to push myself up into bed

I loved the camisole that the hospital gives you. It holds the drains really well. I still wearing right now as I have one still in. I bought lots of clothes I could button it step into but I bought my actual size. Well, that is fine after the drains come out, but when the drains are still in, you will need an extra size larger than your normal ice because you will have 4 tubes with bulbs to stuff into your shirt or dress. I never considered that and luckily backed a oversized sundress at the last second. I have had to wear that one garment everytime I leave the house since surgery because it's the only thing that guts the drains.

I'm looking forward to wear all me new clothes after this last drain comes out!

Best wishes to you. I think we have the best team in the nation.

brca35 · July 2014

only thing that "holds" the drains. Lol. I noticed lots of typos. Oops. I owe it to lack of sleep and pain meds.

GointoCarolina · July 2014

cascader..how are you doing? I didn't realize the fires were near you...I am sending lots of positive thoughts your way...brca35,glad to hear you are doing well and thanks for the tip about the stool...and the clothes..I have been buying loose things..but I bet they will not be big enough for the drains....Ketch,sure hope you lose the wound vac soon and get back to normal..whatever that is for all of us! lbrewer,the reason I am nervous about my weight is last year I weighed ten pounds less and they wanted me to lose those ten pounds.My weight has been an ongoing issue since chemo.I lost 30 pounds in one month..and I was NOT 30 pounds overweight.My PT said I had lost so much muscle that at my age,it was unlikely I would ever regain it.My doctor says the less muscle you have,the lower your metabolism.I can eat fewer calories than I burn..according to my Fitbit..and it makes no difference...but not much I can do about it now!

lbrewer · July 2014

ask the hotel for a handicapped accessible room. Everything is easier!

lbrewer · July 2014

Going,

Just make sure you get protein. It promotes healing after surgery.

ketch · August 2014

One thing I found to hold the tubes was a cloth nail apron from Lowes. It is perfect for tucking all the tubes into it and then wearing something flowy (sp!). I wore Tommy's shirts for a while and stretchy pants. ((I'm still in elastic short pants now with the wound vac!) Frankly, I did not care much what I looked like for a while.

I did not need a stool or anything that I can remember. I'm not tall but I can see where someone shorter would need one. The main thing is to get what you need, eat your protein, walk, and heal. After this last surgery, I drank a Boost protein everyday. It wasn't bad. I'd put it in the freezer and it'd be like a slushy. Sams has them cheaper than anywhere else, plus it has a lot of other vitamins in it too. My home helth nurse says I'm healing like a "young person".....I told her I *was* a young person!!

PinkHeart · August 2014

All,

It was a looong drive down yesterday due to headache and so sleepy had to stop twice to nap!

Feel great today and went to Drayton Hall plantation house tour. Mass on Sullivans Island tomorrow morn and then lunch and beachwalking after. Four days before my visit to the OR!

brca35 · August 2014

18 days post op. It's tough being so far away from Mt. Pleasant. I really understand how it would be nice to be able to make an appointment to see your surgeon during post op.

Did anyone else have mesh inserted? Dr. Craigie told me he used mesh, but I didn't remember that until today. (My memory has been awful since surgery) I have such weird pulling feelings in my abdomen as well as muscle spasms. I'm thinking the pulling feelings might be from this mesh.

I read the surgical report and it was used "to reinforce the lower abdominal fascia." Has anyone else experienced this?

philomene · August 2014

Why would he use mesh? My sense was that because DIEP didn't remove abdominal muscles like TRAM does, mesh isn't needed. That concerns me.

GointoCarolina · August 2014

Here is a description of fascia

A fascia is a structure of connective tissue that surrounds muscles, groups of muscles, blood vessels, and nerves, binding some structures together, while permitting others to slide smoothly over each other. Pinkheart..how are you??? You are almost at the finish line!! brca35,call or email and ask and put your mind at ease....Counting down the days and I go from being excited to scared to numb to frantic...

Ashira · August 2014

Wishing you well Pink! You are in my prayers for a smooth surgery and a speedy recovery.

Ashira · August 2014

BRCA, dr. Kline explained to me that he used mesh on my abdominal scar, and that it was dissolvable. I didn't ask why, but believe that it 's standard practice. I agree that if you're concerned, that you should email. I'm sure that they'll explain thoroughly.

I know how scary it can be to be far away. I drove 15 hours to CHS.

You're still less than three weeks out of surgery though, right? I would expect that things might feel like they are pulling still. It really does take time to heal. As for the muscle spasms, I didn't have them, but have read of many who do. Again, email or call if you feel truly concerned. Beyond that, just try to call upon patience to give your body time to adjust and to heal. It really does get better, but it's journey for sure.

deann_nd · August 2014

I am wondering about how long I should stay in Charleston after my stage 1 surgery before flying home? How long did those of you who flew in stay?

PinkHeart · August 2014

Hi deann,

I stayed one week after stage one. Did Dr Kline ask for same time?

When is your surgery?

brca35 · August 2014

Deann. I flew out on post op day 9. I worked out my schedule with the staff before booking to make sure my surgeon was ok with the time frame.

Charleston Bound, part 2

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