May 2016 Surgeries
Comments
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Raven - have a great vacation! At least - I'm sure a change of pace and location will help with whatever - just to go do something normal or different and absorbing and get your mind off things. I hope you have fun!
Grandma - I'm no doctor but I also think it's odd that you're still producing follicles 5 years after menopause. I didn't know that could happen. I hope your biopsy goes swimmingly and everything is fine and you just have super-nostalgic ovaries, like they just hung on to the last batch of baby clothes from the attic because they're just too tiny and cute to let go.
This is what I was trying to say when they accidentally discovered I have a malformed organ and need to have other structures checked out - it's the random stuff that gets accidentally found along the way that just throws me. *Everyone* has quirks and variations in anatomy and physiology, it's just a statistical reality. Then you get a batch of drs ordering tests and suddenly it's a list of things you never knew you needed to worry about!
Happy weekend everyone. Hard to believe the kids are back in school, autumn is coming, and I'm still in "recovery" after 3+ months.
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Oh Val, I'm so glad to read that the burns are getting better. Mine are still getting worse. At least they don't hurt. Enjoy your vacation. We're also going for a week away just to have the vacation feeling. I'm glad the kids are coming too before they start school again.
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Greykat, it was nice to read about your insurance. That's one less worry. It might need more than 3+ months for us to ever recover. That's why I've stopped counting the time since chemo, surgery, rads. I'll heal when I heal and one day I'll feel better.
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GreyKat - thank you for your comments -they brought a smile to my face
I found a paper about a very large study of over 50,000 postmenopausal women saying that nearly 20% had ovarian cysts (which are essentially enlarged follicles) and that after several years of follow up, none of the cysts resulted in ovarian cancer. That makes me feel better, except for the thing about free fluid in my pelvis and the fact that I had breast cancer. However, I had a dream last night about my GYN calling to tell me that everything was benign. Hope it's a good omen!
Val, I'm so glad things are healing well.
Moreshoes, thinking of you today and sending healing thoughts! -
Moreshoes, Grandma3x thanks so much. Moreshoes I'm trying to get there with when I heal is when I will heal, rather than having a count down.
In your pocket for good results Grandma3x. when we get to the point of we have done all we can, we have to let the bread float so to speak. I'm trying to think that way. Have to see ob/gyn for regular stuff, then a colonoscopy all routine test, but I never will view routine again. Then my mammo in December. Was thinking of putting everything off till the first of the year, but decided to go ahead and schedule. Funny it will all take place during Pinktober which I personally HATE. .
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Hi Moreshoes! I hope your burns start healing up and you have/had a good mini-vacation.
Grandma - Hoping for good results for you.
Valstim - I *know* about Pinktober, right? Ugh. I think this year I might go full-on media blackout because it's not like I've thought of anything else for a solid year now - this started last October for me - so really, the last thing I want is the obnoxiousness of it all this year. What I WANT is a break. It's not like with TE in my chest for an indefinite period that might extend a year or more (!!) I can ever actually forget what happened or what lies ahead. I get reminded of it anytime I try to sleep, or open a door, or... Ok, I'll stop. I get riled up about the Pinking of Everything but I've already ranted about that once on here.
Anyway, I just had a happy phone call - they've been monitoring abnormal cells for nine months now and I just got the latest test result that it's all normal enough to forget about. One less thing to worry about! Now just have to followup with the PS about "pausing" recon for six months or however long, and maybe I'll finish healing up from that awful infection (I seem to be healing slowly these days), and then I can just focus on the nerve damage therapy and exercises.
Maybe soon I can get back to my "regular" life - if I can remember what that entailed, lol. Hopefully that wishful thinking won't jinx me.
ETA: I just realized that by the time I finally get healed up enough to be able to have exchange surgery next year, I probably won't see any of you ladies on here because you'll have finished everything up and gone back to Real Life. I'll miss you all when that day comes!
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I just want to get to a point where I'm not thinking about cancer 24/7. Hard to do with burns that are healing, sore joints.
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GreyKat - good to hear that your quirky cells are "normal enough"
Val, I know exactly what you mean. Someday we will look back on this and think, oh, yeah, that was the year I had breast cancer.
My biopsy came back benign Funny, I had a dream the other night that I was at the GYN and he was doing an exam, but then we were in the area right next to the receptionist's desk in his office. He turned to me in my dream and said "it's benign". Today I stopped in, not expecting that the biopsy results would be ready yet, but wanted to pick up a copy of my lab reports from a few weeks ago to take them to my appointment with the BS tomorrow. While I was standing at the receptionist's desk, I asked if my biopsy results were back and she said yes. Just then, the doctor walked through and saw that I was standing there. He looked at me and just said "it's benign". I'm not one to believe in dreams, but sometimes I wonder....
Thank you all for your well wishes! -
hurray grandma3x!!!!!!!
GREAT NEWS!
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HOOOORAY GRANDMA 3X... YAAAAYYYY
Hey Greykat,
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Yay Grandma3x! Yay for benign! Kinda funny about your dream coming true so exactly...
Um, hey Valstim? You kinda cut off there.
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Greykat I was going to say glad you got your happy phone call, glad you have one less thing to worry about.
Yes I will need some serious hand holding during Pinktober. I dread it.
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Oh that's ok Valstim. Thanks. It was nice to get a good-news phone call because then this afternoon it was followed by a letter from insurance about how they're going to deny X, Y, and Z and I have to fill out paperwork and .... It's frustrating. Lately I feel like I'm calling them every other week and oh look, I have to do that and mail off forms now.
This October I plan to focus on happy things as much as possible, and whatever I can do to promote healing. Don't have any energy for Pink Stuff this year.
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Awesome deja vu experience, Grandma! Happy for the good results!
Keep fighting, GreyKat! Insurance issues are the pits, too. You know, it's bizarre, but I don't hate my TE's nearly as much as I did the first month. I've weirdly become used to how they feel in my body and wonder if I'll miss that feeling a little bit whenever my exchange happens. Maybe I'll be your long-term TE sister.
Valstim and MoreShoes - keep on healing!! The "thinking about bc 24-7" comment was spot on. The emotional toll feels as great as the physical one. Hoping Grandma is right and we can look back and say "remember that year".
I mentioned early in the May thread that I opted for BMX after DCIS due to a strong family history of BC on my maternal side. Mom, aunt, grandma, and additional family members all had BC more than once, and before the age of 45. I always felt my own dx was a matter of "when" rather than "if", and my BS pushed for the BMX when I was dx at age 43. It's an aggressive treatment for an early cancer, but due to my risk factors it was a reasonable decision. I tested negative for the BRCA and other breast cancer-causing genes, but still opted for the BMX.
After my dx, my aunt agreed to do the genetic testing. She found out last month she's BRCA1 positive. She had her ovaries removed as a precaution, and cancer was found in each of her Fallopian tubes. She had a follow-up surgery last week, and begins chemo soon. The doctors were happy to have found this now rather than 4 or 5 months in the future - she could have had different outcomes. This has prompted my mom to get tested, too. So....although I don't share the same genetic factors as them, which could make me question if my aggressive treatment (which has come with complications) was really necessary after all, I like to think that my family's BC caused me to stay on top of my breast health over the years, and my BC may have saved my aunt's life since it sent her into action.
Sometimes it's hard to see the positives as we go through our journey and experience so many ups and downs - and maybe pink makes us feel a little pukey - but we're lucky to be able to lean on another and share our stories (really glad to have "met" you ladies!) and acknowledge that sometimes we feel worse to feel better. Cheers! Now off to my weekly PS appt....
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ToyStory - we can be long-term TE sisters - but let's hope it's not a long-term as we fear!
I'm glad to hear your aunt's fallopian tube cancer was caught early enough to treat. I've been told repeatedly that I need my ovaries and fallopian tubes removed as well, and at the very least, the FT, ASAP, like yesterday if possible, but I am opting not to. I was going to eventually, maybe stall a few years and then have everything out all at once, but after this all went so terribly wrong, I just can't bear the thought. One of my oncologists said he sees that a lot with patients with multiple things going on - eventually they just say "I can't do this anymore" and call a halt to things. For some, I think that means drawing a line on further treatment, and for others, just taking a break to recover. So once in a while they peek at my ovaries and it really doesn't do much good, but it's all they can do, and that's what I'm doing for now. Maybe in a few years I'll revisit things depending on how this current mess resolves or doesn't resolve as I quickly approach the one-year mark.
This cancer stuff - and all the horrible complications, expected or accidental, that result - is awful, traumatic, exhausting, demanding, painful, and relentless, and there's only so much a body can handle at once.
I'm glad your actions may have helped your aunt find her cancer early enough to treat. It's good to know some of the suffering has a greater purpose among those you love.
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I've felt so fortunate that my treatment plan didn't require rads, chemo or Tamoxifen - I would definitely have experienced more of that "throw in the towel" feeling. My bacterial infection setback was traumatic enough....I have so much compassion for those who go through more! Totally understandable that you're taking a break between procedures, GreyKat - how much can one take....emotionally and physically.....ugh!
Had an uneventful PS appt yesterday - another fill on the right side which put me at 300 cc's. Keeping an eye on my scars these days. Left side goes across the middle of the foob, but with the additional skin removing surgeries I had on the right, the scar line has been staying on the under side of my foob after each fill. I keep thinking it will get pushed up to the middle, but that hasn't happened yet. I don't mind it hiding down there and staying out of view, just wish I had a matching look on each side. I'll ask the PS about it when I see him in a couple of weeks.
Speaking of scars - anyone have a successful scar fading treatment they're using?
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Yes I'd love to see the scars left from the hematoma and blistering I had disappear or at least fade, because they are large, cover a lot of skin, and are UGLY. Also the ring of scarring all around my chest/shoulders/arms from The Staple Queen and her stapling the drapes to me! Still mad about that. I might be more forgiving if I didn't have a ring of unnecessary scars mocking me constantly.
I'm not too worried about my incision scars because the PS is going to cut through them again at exchange, whenever that is, so there's no point until I'm done.
But if anyone else has heard anything that works to help fading, let us know! (Especially if it's not the $ products I could probably find at the PS office among the "vanity" treatment side of things.)
ETA: My PS said that the large area of skin discoloration/scarring that I have from the hematoma and blistering should fade naturally within about a year. As for the incisions, that's another story. I guess we'll see. One of my healed incisions keeps turning red and getting painful, which isn't helping matters.
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greycat - I too got the "all clear" from my oncologist. It was the most releaving discussion I've had since I tested positive for BRCA genes.
I'm sorry you are struggling with your treatments and hope for better recovery and outcomes for you in the future.
I had exchange yesterday and other than expected post surgical soreness, I'm now sporting my anatomical squishies under layers of compression garmets. I hope you are able to get to this phase soon.
Valstim, I am so sorry you are also struggling. I'm thoughts and best wishes are with you as well.
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LRGO - congratulations!
I had a talk with my PS last week. Bottom line is no more fills. I'm oddly disappointed in this, but I think it's the right call. In my head I want to be a bit bigger, but also find myself avoiding any tight-fitting shirts because my foobs seem so much bigger than I'm used to, lol She also explained how she would lower my left side to bring it closer to where my right side sits - something about pulling skin from below to rebuild the inframammory fold. I probably won't be perfectly even but hoping for something better than what I have now.
I have an appointment with a GYN oncologist next week to talk about removing my ovaries when I have my exchange surgery in Oct. I really hate the thought of having repeat ultrasounds every few months to check on them and would just as soon have them taken out. Just want to get on with my life and stop worrying. -
Thank you Grandma3x.
My PS lowered my right girl down to ride even with the left. He put in 495's to fill my 450 TE holes. So I'm bigger than I thought I'd be. Also fat grafted. All my divots and dimples appear to be gone! Yeah. But ouch am I sore.
As for the oophorectomy, the only down side is instant menopause. Ive had hot flashes ever sense. But my surgical menopause came early when I was well before natural menopause. Most women will stop having them in months or the first 3 years after the surgery. I'm just an exception.
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hello all. still in hospital. had a mild stroke. lots of therapy and doctors. good news i've every scan known to man and no cancer. sorry my dd is typing for me.
val
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Valstim, so sorry to hear about the stroke. Thinking of you
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Oh no, Val! I hope you are ok!
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Gheeze, Val, I hope you are ok. A stroke!? you've gone through enough! Hang in there and I hope you recover fully! Thinking of you .
Lrgo
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Thanks so much everyone. DD is typing for me.
I had a terrible pain in my lower left arm, then started slurring my speech. Dh called 911 and it was a blur. No high blood pressure or heart problems, so it was a surprise. A vein blew out in that arm, and that's why I had the pain, it was on my masectomy side. they had to make sure there were no tumors pressing on something causing the symptoms. though scary at least it ruled out cancer in my brain or bones. spine etc.
I feel a little weak on that left side, and will have therapy. Ugh.
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Oh no Valstim! No no no!! I hope it isn't too bad. I know when I ended up in the ER with a suspected stroke and they sent the case managers up to talk to me about assisted living I was scared and then mad as &%#@ this was becoming my life. Having spent months one-armed/handed I know the frustration and anger that comes when your body won't listen and do what it's supposed to. I hope you get good, quick help and a great rehab/PT team and make solid progress. It's a frustrating, sometimes painful path - two steps forward, one step back - but don't give up. I still have days so discouraging that I end up crying in my car in the parking lot. But you know, at least I got the ability to drive back. I will be thinking of you a lot. Please keep us posted. @$*#^%, now I'm crying for you. At least no more cancer, right?
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Oh no, Valstim! So very sorry to read this!! Glad your DH was there when the symptoms started! Relieved to hear there's no cancer present. Sending healing prayers your way!
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Weekly PS appt today. Another fill of 50cc's on the right side (350cc's now). Only 2 more weeks and they'll be even again! Sooo ready to be done stuffing my bra!
But.....this past week I started to notice a new pulling on my left armpit when I raised my arm. Asked the nurse about it and she confirmed that I was developing cording. Now I've got to investigate how to deal with this new problem....anyone else experiencing cording?
How are things going, Valstim?
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thanks so much for the well wishes everyone. I'm slowly coming along. Some left side weakness. DD is still typing for me. Hand and mind not cooperating. I hate this so much.
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Valstim - hand and mind not cooperating is truly a good sum of things. I don't mean to be presumptuous but I know that feeling very well and it is immensely frustrating, at least to me. Please be patient with yourself - I know that can be so hard. I am so sorry you've had this thrown at you to cope with on top of everything else. It's good to hear from you - please keep checking in with us as you feel up to it and let us know how you're doing. I think of you often. I hope you get a good physical therapist as soon as you can.
Unsolicited advice: just keep trying to do the normal things, even if you have to pick your arm/fingers up and move them with the other hand - just keep the muscles in motion so they don't atrophy as fast, and it does happen fast. Also it helps the body "remember" neural pathways. This I've learned from my time in OT. If I'd gotten in sooner I probably wouldn't have had as much muscle atrophy and might have recovered more function or more faster than I am now.
Toystory, a long few pages ago someone had cording and I recall this because I freaked out over my own underam/side tightness, lol. As I recall it was something a PT could address and they can "break" the cords by manipulating them somehow until they relax. I think BCO has a page on it somewhere too. Just one more tail to chase, right?
I've been in a lot of pain the last five days, and finally yesterday I skipped half my therapy exercises. Boy did I get a lecture today from the therapist. Skipped once in six weeks! But apparently it's a slippery slope and once you start, you just can't stop... and that's the slogan for Pringles. Now I'm hungry.
ETA: Found it Toystory - http://www.breastcancer.org/treatment/side_effects...
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