May 2016 Surgeries

Val - enjoy your vacation!

I went for a pelvic ultrasound this morning because of the ascites that they saw on the CT (related to the swollen calf and ankle....). They told me to drink 32 oz. of water 90 minutes before the exam, so I did and thought my bladder would burst! Then the tech told me my bladder was too full and made me go twice to try to reduce the amount in my bladder! Anyway, I'll get the results in day or two and we'll see where we go from there.

Frist off, congrats to Val and MoreShoes for finishing up rads! You made it! Time for the healing to begin.

Val, have fun on your vacation at end of August. We're heading out for our annual family vacation the last two weeks in August as well – really looking forward to it!

Speaking of vacation….glad the swim poof worked out for you, myToyStory2. I'll have to research a little more on how you did that. I, myself, was not born with the craft gene, but I have a neighbor whom I'm sure would be happy to help out! Do you think it would work if I just had her sew them into a Genie bra and then wore that under my rash shirt? Would I even need to sew them in since there's an insert in the bra? Just spit-balling here…..

Grandma, I'm sitting on pins and needles here waiting for your results – I can only imagine how you must feel! Please keep us posted – sending gentle hugs your way.

GreyKat, malformed/possibly missing organs??? I'm with you – it hasn't bothered you so far, let's not add something new to the list! Good to hear that the therapies for the nerve damage in your arm will eventually pay off. Obviously it will take time and hard work, but at least it's good to know that the effort will be worth it in the end.

My next appointment with PS is on 9/8 to schedule surgery to start over again with TE on the right side. I'm really ready to get this show on the road. Hoping for 9/30 for a surgery date. The ID wants me on antibiotics at least 2 weeks prior to surgery, so that gives me time to do that. Plus, it's a Friday, which is a day I know the PS does surgery at my hospital, so I'd be able to take it easy over the week-end and then hopefully start work again early the following week. I have a bunch of huge projects starting in September that I really need to be able to do, because I'm running out of money!

This was our "practice poof" - notice how much the white one ends up looking like an onion. We made the next one a little wider and did a better job of filling up the swimsuit cup. Could easily be pinned in, sewn in, or placed into a bra, I think. Instructions are on another post - search for swimming poof - very helpful to keep reading the thread until you see the pictures because the instructions can be a little confusing. Hurray for crafty folks - I'm not one either....

Search for "swimming poofy" and you'll find a thread with that title. Step-by-step instructions are there. We made two of these for less than $2....another reason to love these message boards!

LOL raven4mi.

They do look like onions. I'm gonna try to make one

Grandma3X - my exchange surgery is in 5.5 days.

Since you asked... I'm slowly turning into an anxious mess so I'm trying not to think about it. He's got to do pocket revision work, fold reinforcement, slice through some more tissue in the center of my chest, and who knows what size I'll end up being because size is getting scrapped in favor of symmetry. I was highly symmetrical before and that's what we're trying to match. I think if all you're doing is popping the squishies in, it ends up being a pretty painless surgery, since we're missing all the nerves, but with more slicing and stitching being done on me, I'm nervous. Can't have most of the pain meds they like to use, so I'm doing this as med-free as possible. There's other little stuff - like metal hemaclips from the mast that are painfully pushing up and can be seen through my skin - that he may cut out. And a substantial infection risk because I'm not fully healed from the last one I had. *sigh*

And all of this while dancing around multiple nerve injuries that can be reinjured by pressure and positioning. It has been a headache, but I also can't sit and wait for a year for this to heal because, you know, insurance. And also job demands. But mostly insurance. So people say a few prayers for me that they don't leave me paralyzed. Either way I can't do the therapy exercises while under the surgical lift restrictions, so I've been told to expect regression in ability.

Glad to hear other people had fun on vacation and I love the "onion" poufs. Hope your tests turn out well, Grandma3X. I'll be thinking of you.

I'm hoping all works out well for you in September!

-- Screams with twig--!

Oh, no, Val! Sorry to hear about the lymphedema. I did a quick Google search on "lymphedema in leg after mastectomy" and found this post from Johns Hopkins that mentions it can occur in the arms, legs, or abdomen. http://www.hopkinsmedicine.org/healthlibrary/condi...,P00148/

Sorry you're going through that on top of everything else! How is the healing coming post-rads?

Looking good, Raven! My mom gets the credit for the tight binding on the poof...I can ask her what her trick was. One thought after looking at the pic - swimsuits tend to have built-in cups that are pretty sturdy, bras don't. Do you have a swim suit top you could try it in and compare it with? It might successfully fill up your cup without having to be as perfectly shaped as it needs to be in the bra. I swam laps with mine in over the weekend and it still felt great and stayed in place for me.....obviously not as good as having a boob there, but a decent solution to a problem we didn't intend to have. (Btw - Your pity party is totally justified! Just keep looking forward to next month!)

Good luck his week, GreyKat! Can't wait to hear about your experience going through the exchange surgery! Hoping and praying things go relatively smoothly for you!

Valstim and Grandma - Glad you're getting some answers for your discomfort, even if it's not the news you were expecting. I keep thinking about you ladies...keep us updated!

I had my regular weekly PS appointment yesterday. Another fill of 50 cc's to get the right side to 250. Interesting how much the left side has settled in the 3 months it's been filled to 450 - each new fill pushes my right side higher and higher and my left side keeps settling a little lower. I'm having to stuff the lower part of my bra under my foob, rather than the top, to even them out. I can see why the PS's make us wait a couple of months after our last fill to do the exchange surgery - things do shift and move around.

Finally started back on a regular workout routine last week and it feels great! DH, who has been an awesome partner in this journey, has been rewarded for his patience and we've been behaving like newlyweds. So good to be taking some steps forward and getting back into normal routines!

Sending waves and hugs to my surgery sisters. Hoping for smooth procedures, and fast healing.

. I have stage 1 Lymphedema (learned a lot yesterday, didn't know there are stages? ) set up for massaging and at home exercises and will see therapist at least twice weekly for now. . I have it in my left arm/hand/fingers etc, The jury is still out on my left leg, I see my ortho today, because I broke my knee cap 3 years ago, and it could be a flare.

The gift that keeps giving.Good news, my burns are healing. I can see a definite difference.

What a wild ride, GreyKat! Glad you're getting the opportunity to take a deep breath and figure out what will work best for you, and that your medical professionals are working with you.

Sorry to hear about the Lymphedema diagnosis, Valstim.....especially after you were finally done with the rads. I hope you are able to find relief through your exercises.

Hello everyone, I too was part of the May surgeries, however have never posted. Alot of your posts and input to one another helped me over the past 12 weeks. Thank you!!!


My surgery was May 25, I had 2 TE placed, cancer was on right. Right side has healed well all along, left side had alot of fluid buildup and about a quarter size area that would not heal. At around week 8, PS had to clean that out. To do this, they removed 120cc from that side (I was at 550 and was suppose to get 50cc that day)When they opened and cleaned the area fluid just poured out. Apparently it was alot of body fluid that i was just not absorbing. 5 days later while out at a funeral luncheon , the fluid started coming through the stitches. My arms, ankles, knees, hands and fingers were a mess. I had to use a cane just to walk. On my weekly follow up PS told me that we were taking out TE and doing implants Asap if i was ok with size. At 9 weeks post Mastectomy, back to surgery, implants placed and i felt "lighter". Sense of relief.


I do not need Chemo and started Tamoxifen August 5th. Only side effect is my monthly friend hqs yet to arrive. Both index fingers are swollen and my knees are killing me every morning to the point I am in tears. Has anyone experienced arthritis like pain thar has suddenly set in?

Spdr1031 That sounds just awful. You sound like you've had quite a trip too - and you're welcome among us still posting here who've all had various complications that made recovery drag out for-ev-er!

I can't really help you on the knees but I get random swelling in my finger(s) and hand from my nerve damage. It's not the same as yours but it is stiff and awkward and annoying. I woke up one morning to discover my wedding ring had cut into my finger pretty badly thanks to swelling while I slept. Took two hours before I could get the ring off. *sigh*

Maybe yours is somehow lymph node related? Or an obscure side effect of the Tamoxifen? If it started up when you started the T I'd really be looking into side effects that aren't so common, so they don't get discussed as much. Either way, I hope it improves.

Val, glad your burns are healing and I hope the massage and therapy gives you some relief.Hugs to you. Try to have fun on your vacation!Where are you headed?

GreyKat, sounds like you've reached a compromise which will be better for you in the long run. As uncomfortable as you are now there's no point in taking the chance on any more damage. I hope you're happy with the decision for now. And way to go for the insurance coming through for you for additional OT visits!

Thanks, ToyStory, for the advice on the poof. I have a bathing suit but wouldn't know where to begin on putting the poof in it – I'd need someone with more skills than me. I'll just have to stick with the lumpy poof – I doubt I'll be using it all that much anyhow, but thanks!

I'm off for our vacation – two week family road trip to visit Mt. Rushmore, with a side trip to Springfield, IL on the way home. Don't know how much I'll be able to check in or post while we're on the road, so just wanted to let you know I'll be thinking about you all while I'm away. All things breast-related are on my mind 24x7, and that includes this board all of YOU! Take care, all.

Welcome spdr! Have you checked the thread on hormone therapy about the arthritis? They may have some suggestions. This is one of the side effects for those of us on AIs and some women find that taking Claritin every day helps. I'm not sure if this is true for Tamoxifen.

I went back to my GYN for a follow up after my ultrasound and he offered to biopsy my endometrium "for peace of mind". Results should be back next week. I'm not really worried but trying to keep busy so I don't think about it too much. The US also noted that my ovaries still have follicles - apparently they should no longer be producing follicles 5 years after menopause, so my GYN is sending me back for another US in a couple of months. I really hate this. I so want to move on with my life but cancer is the gift that keeps on giving, LOL.