August 2011 Surgery Group
Comments
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Oops I meant cording, not banding!
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Debbyw - Cording and banding are the same thing, I think. My breast surgeon called it banjo strings. I read that it can go away spontaneously and that's what happened to me. One day it was really sore to stretch my arm and the next day the tightness is completely gone. I hope it doesn't come back. In the meantime, stretching it gently is what my breast surgeon recommended to me. If it's really bad you can ask for PT sessions.
I'm 1 month out from my lump/SNB and waiting on the RO to sign off on my treatment plan. I am so ready to get started on rads and get it over with!
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I'm so glad the tightness is gone for you! I'm 1 month out on a double mastectomy, and am still pretty pooped... I won't need to have radiology, but your positive outlook should help you fly through. We both get to deal with tamoxifen though, if I start before you, I'll give you the scoop!
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Wow, it's been at least a month since all our surgeries.
I meet with my MO tomorrow, first time since Feb. to decide if I need / want to take tamoxifen. Initially he said because my tumor was .8 cm, that it would be my choice to take it or not, and that he would see me again after BMX to discuss further. I have been doing lots of research, and am still undecided.
I am still very stiff and achy across my chest, but have started back to the gym and my yoga mat. Trying to be gentle with things, but really would like to regain as much strength and stamina I can before my reconstruction surgeries. Hope everyone is doing well with chemo, radiation, improved healing, seromas resolving, reconstruction, or returning to work. We certainly all have our unique paths in this journey! I do check in often to see how everyone is doing and hope to keep reading updates on everyone!0 -
Good luck with your MO, I see mine on Wed. to see how my oncotype results faired. So chemo. may come first, followed by tamxifen. Yoga and the gym sound like perfect antidotes for your stiffness and achiness. I'm still a little too pooped because I had immediate reconstruction with expanders placed. Not sure if it was the best decision, but I'll probably be okay with it once I regain my strength and focus! I'll be thinking about you tomorrow!
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Hi Ladies, just wanted to chime in on a conversation I had with another lady also going though chemo right now. We talked about the fact we both had to do chemo and then for me there will be RADS and we both end our treatment journeys with Tamoxifin or Arimidex.
My best friend had a MX 10 years ago when she was 35ish. She was on Tamoxifin and had various issues with the drug but muddled through. I hate meds, used to be a vegetarian years ago, was a health nut and never put anything into my body that wasn't "natural." Anyway, the discussion I had was that WE CAN TRY THE MEDS and if the SE's are too much, WE CAN STOP. Each of us has to pick what we are willing to put up with. Nothing in our treatment says we can't stop something that isn't working for us. Yes, it may add a % or so to recurrence but there is a balance with our Quality of Life.
So, when the time comes... I will try Tamoxifin since I am ER+. If it flips me out, I'll stop. I'm actually hoping to be into menopause by then, but who knows. Good luck with all your decisions.
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Rockym, I am guessing that your friend who had a MX at age 35 has never had a recurrence? I have never taken meds before, either, and prior to this have been blessed with outstanding health. I am also careful about what I eat and have never even taken birth control pills. But I was like you and decided to try the Tamox. One point my MO made was that unlike some other drugs, they have been using Tamox for a pretty long time now, so at least they know what to expect with it and lots of women apparently have no side effects.
I have nearly finished my first bottle of Tamox - I just noticed last night that I only have a couple pills left and it's time to stop at the drugstore on my way home from work sometime soon. I have not had a single side effect yet, so I am really hopeful that I can breeze through it over the next 5 years. Yes, it took some getting used to having to take a pill every day like I was sick or something, but now it is just a habit.
Hopefully, it will buy me 5 years without another surgery! My RO said if there was a next time I'd be losing my breast, not just a little chunk of it - and from reading on here I know that this is a major surgery with more serious recovery time. Luckily, this time I got away with a lumpectomy, and I was in a dragonboat race exactly 30 days from my surgery, so it did not slow me down for long.
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Hi ladies!
So I thought it was cording, but the PS disagreed with the NP, and said it is my implant cutting into my muscle. I'm not sure that is much better. And, after all this and thinking I had one-step implants and could kiss-off the PS sooner than later, I find out that I'm going to have to have surgery again to exchange these for silicone. My implants have both drifted way into my pits. Not only is it uncomfortable, I have a HUGE gap where prodigioius (sp?) cleavage used to live. Now I am also a part of the Oct '11 surgery group and will be in the Nov '11 surgery group, and G-d knows what else. I'm done now. Beam me up, Scotty!
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EEMA--so sorry for you. I had the BMx with nothing so gotta have more surgeries too down the road when done with chemo and rads...this whole thing sure sucks!! I hope you can get the results you are looking for...seems like it is one thing after another. On the plus side I keep thinking about how perky the "NEW" girls will be. Mine were saggy n baggy from nursing 2 kids and were super heavy to carry!
Maggie
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For those who are still feeling rather tired from our surgeries, I wound up taking just a couple iron pills, I bought a bottle of just iron, and after just a couple days it brought me around. I had tried protein and steak, but it was the pills that gave me strength.
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Another thing, to piggy-back on dogeyed--my BS told me that low Vit. D is common with women with BC. I know when I started taking it I felt MUCH better within a week. Come to think of it, I'm out, and have been sleeping a lot! Time to get some more D!
Yeah, mine were saggy and heavy and lumpy, too. I don't want THEM back, I just want nice sweater puppets! I'm a vegetarian, so the hamburger bun look isn't me;)!
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Hello August SG - this site is pretty quiet. Would love to see everyone check in with an update. We are all moving on to some combo of chemo, rads, HT and reconstruction.
I think of all the sisters in this group quite often-- and how much it meant to me to read your posts while i was negotiating my own path and facing unknown fears over the past few months.
You've helped me more than you'll know.
Hope you are all doing well and can take a minute to send an update.
Joan
PS - I guess I'll update first
Lumpectomy 8/30, MO appointment 10/6, skipping chemo, making RO appointment, starting Arimidex while waiting for rads to begin. Discomfort developed in left arm to elbow after 3 weeks; lumps and bands or fine cords persist in axillary area. Generally doing well!
Update - 10/12 - MO decided I should start my Arimidex while waiting for rads setup. It sounds like a good idea to me.0 -
Hi, Joan811. I agree with you that this thread helped so much. My update: Diagnosis August 15, Lump/SNB August 26, swollen seroma but no problems since then with surgery site, MO appointment September 9, FISH result on HER2 final report + on September 15, port placed September 26, Herceptin started September 27, Taxotere and Cytoxin started October 4, developed hives on hands, taking steroids, may have to switch protocols, radiation and Tamoxifen to follow. Thanks to all for going down this road together.
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My update: double MX on 8/16 with 9 lymph nodes. Chemo done before surgery. On #11 of 33 rad treatments today 10/12. Back to work about 4 weeks ago full time. Am tired from the rads but generally in great shape. I'll probably stay flat chsted and just go with my prostheses, the thought of more surgery is too much for me. I love my skin the way it is. Hair is growing back and I get lots of compliments. So I have my moments of mourning but they don't last long. Will go on Tamoxifen or the other Armidex soon for 5 years. Love to all, Linda
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Hey gang. I had my BMX on Aug 23rd. I'm getting one more fill in my TEs next week. I'll be so happy for the exchange surgery (thinking before Christmas) because these things are SO hard. It just doesn't even feel like part of my body.
I'm currently doing AC--2 of 4 done. I was told I had a "complete pathological response" from the chemo before the surgery, so YAY!!! I'll be done in a month or so then it's onto Herceptin for a year and Tamoxifin for 5. I'll go back to teaching in January--looking forward to it, but SO tired right now. I've been really lucky so far though and haven't felt really bad SEs from the AC. They said this would be the worst part, but I'm alright so far!
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My update is mostly in my signature, I guess. Mine is a history of delaying tests and treatments, dragging my feet on everything, struggling with the idea that my seemingly super healthy body was harboring these cancerous cells. I know I'm one of the lucky ones, just DCIS, just in one place. But I had other plans for this year, and it was hard to let go of some of them in order to be tested and treated and heal. Bear with me, I feel like writing a novel here...
I saw my first BS at age 19 because i had a big lump in my right breast and my mom couldn't convince them to give me a mammo at that young age. The surgeon thought it felt like a fibreadenoma and it has been monitored ever since. It has gotten pretty big and is tender before and during my period, but has never sent any alarm bells ringing since then. I say this because a couple friends of mine who also got BC had lumpy breasts, too, and they agreed with me that it can create a false sense of security. Although I did feel like I might get BC one day, after they were dx. I just thought it would happen when I was their age, in my fifties.
I had my first mammo at age 35, because my GP wanted a baseline. Then since I was 40, I started getting diagnostic mammos every 6 months, although I didn't realize what that meant. I thought everybody got US and multiple views, and sometimes were asked back for checkups in 6 months. Sometimes I waited more than 6 mos to go bac. What did I know? Some people mentioned dense breasts and I just thought that was because I was younger. Nobody said it was a risk factor.
Anyway, at my last mammo this Spring, the Dr insisted on a biopsy, although she assured me that
most of them turned out to be nothing. She said I'd get a nifty titanium BB in my breast to mark the spot, and this would make future mammos and US visits go a lot faster, because they could rule that spot out. This is the first thing I delayed, btw. They told me I'd have to take 2-3 days off training and I waited until I completed at least one tryout. Two days after my stereo bio, a nurse called to tell me I had DCIS, and she said that was cancer and I'd have to see a surgeon, schedule an MRI to see what else I might have, and may need other treatments. That was in June.
I saw 2 surgeons and both recommended lumpectomy and both agreed I could put it off until my biggest competition this year, as long as I could live with the tiny chance my path report turned up a nasty surprise. Lucky, it did not. So at least I made the team and got to my most important races. While I was healing from the lump, though, I missed one running race I do every year, and another canoe race. Also, my new boat was delivered and I wasn't even allowed to lift it off the truck, much less take it out. Thus made me sad.
In september, I saw an RO that didn't have the warmest bedside manner and he put the fear of God in me about rads. He didn't think I'd have an issue with fatigue, but he told me I wouldn't want to work out within a week of starting. This just when I started feeling like a normal human being again! I called around and found out he was the best RO at the hospital I wanted to get rads at, because of it's convenient location. So I decided to stick with him, but only start rads after it was too cold to paddle outside. My last race this year is Oct 23 and my first rads appt is Oct 24. I will miss a couple for travel so I probably won't be done until the holiday season.
This delay is causing my dear partner a lot of anxiety but I feel like I got good margins, my BC was non-invasive, and some women have delays anyway, because of surgery complications or what have you. I am scheduled to have my first post-surgery and post-rads mammo in Jube 2012, so hopefully they not find anything new, because I'm sure I'll hear, "I told you so!"
I loved my MO, in contrast, and have been taking Tamox ever since he gave me the scrip. So far,
so good, too. No SEs that I can notice. Certainly nothing that is slowing down my workouts or interrupting work. I guess I'm going to continue taking it during rads, too, and hope the 5 years go by fast. I see my RO again next month.
As for my lump scar, it has gotten worse looking, if you ask me. The left side of my left breast has a distinct sunken-in look and the scar itself is so much bigger than I expected, given the small size of my tumor. I am thinking about having a tattoo done over it, something decorative to reclaim my breast for myself. I will say that reading your posts remind me that I was very lucky to be able to keep my breasts, at least for now.
Thank you for reading. Obviously, I needed to write it all down today0 -
I wasn't ever too active here but figured I'd stop in anyway with an update.
I had lumpectomy/SNB on August 30. Nodes were negative, so no chemo for me. I had my first of 33 rads today. I have been going through a lot of anxiety about not knowing how the rads will affect me. I'm the kind of person who likes to know what to expect and I hate just waiting to see if I get tired, sore, burned or whatever. After rads I may or may not do tamoxifen - my MO said it would probably be my choice. I'm putting off thinking about it til after rads are done.
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By the way, I'm posting on the Oct 2011 rads board if anyone here wants to come on over.
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Hi to all of my August buddies, good to read everyones updates. I am doing really well. My scars have healed nicely, and can roll over/lay on sides etc in bed now. Have started running 3.5km each day. So much easier without the boobs flapping around!! Hair is about 2cm long now, so have gone "topless" for a few weeks now. So liberating not to have to cover up with scarves etc. Feeling really healthy again, however....have a lump near where my original tumour was...had US and BS thinks it is just fat necrosis. If still there next month will need biopsy....bloody hell!!!! It had better disappear!!! That was a few weeks ago, and it is unchanged...hoping for the best. Sure it will be ok....hugs to you all.
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So good to hear the updates -
Nancyjill-hope you resolve the chemo reaction and can keep moving through this.
Linda (Rangermom) - wow you've really come a long way - glad you are knocking down the rads.
So nice to hear your hair is back!
Profbee- you have so much going on- and it sounds like it's going OK. Hope you can get that exchange surgery behind you and feel good for back to work.
Natters - whew! you are getting through it. I had a lot of delay and family doesn't love it. Keep moving!
Dawmson, I'm with you - rads up next ...[still waiting for consult though]. Hope it goes well for you.
Hugs and healing wishes to all
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I don't belong to any particular treatment group other than this one, so it is very nice to hear everyone's updates! I had my skin sparing BMX 6 weeks ago to the day. My small seroma seems to have resolved, but each side of my chest looks very different. One side has healed quite flat with the extra skin at the ends, and the other side is flat on the ends, with the extra skin in the middle. Keeping fingers crossed that the cosmetic result will be the same - I will see PS on Halloween and will hope to have a date for expander surgery then. I can't wait to be where you are at with fills Profbee! I am becoming more used to my fiber filled prosthesis but usually go without at home. I have decided against tamoxifen ... Weighed risks and possible benefits, took a deep breath and made the best decision I could for me. Hope I am right.
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My phyical therapist explained that cording has to do with the lymph fluid trying to adjust to the removal of the nodes. I had quite a bit of cording at the beginning, but she was able to massage it away. I'd suggest seeing a PT--mine has been great in keeping things moving.
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Update on me: My incision sites finally healed up enough to start rads--they look so much better after the surgeon removed some tissue and re-closed. Started rads on Tuesday, so I've had two treatments. I started Xeloda (oral) today. I have 35 rad treatments and will do the Xeloda (1 week on, 1 week off) during that time. Then I will do 3 months of IV chemo. My MO said I can have a few weeks off between, so I am really looking forward to that!
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Hi everyone. It is nice to hear all the updates and realize all the progress we have made! I had chemo first (March, April, May & June) and then surgery, UMX on Aug 16th. Clear margins and no nodes. I opted out of Rads. Started tamoxifen 1 month ago, and so far so good...no SE yet. My incision has healed really nicely, my BS did a great job. I am not having recon. I have finished a month of OT which was a great benefit. I have all of my ROM and a lot of strentgh back. I had an interview today and hope to be going back to work in the next couple of weeks.
Great to hear from everyone...take care!
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ALL, I'm worlds better from surgery, still have a little puppy ear near arm, HATE IT. I've only got two weeks left of rads, and then I'm finally done with this whole thing. BLONDE, glad you got that wound straightened out, and thanks again for the lymph exercises, by my next visit with the rad doc, my arm's swelling had gone down and I was regular again. So good to see everyone again! GG
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I had my BMX on Aug 8 and very sorry to report I am still draining. I went for #14 today. Down to once a week but still not able to start Rads. She drew 30cc off one side and 24 off the other. It is beyond frustrating!!!! To me it means something isn't healing in there. I had no recon so the fluid build-up is easy to spot. Both the BS and the Onc say not to worry. It is unusual but nothing serious.
I am returning to work on Monday-had hoped to have the Rads completed before I started back. Whenever this whole draining nightmare is over I will work on afternoon shift so I can do the rads in the morning. I did my chemo first but I still go for herceptin every 3 weeks. I also have a scan coming up in 2 weeks.
So glad to see how everyone is doing.. I wish everyone the best as we move forward.
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Lily, so sorry to hear your progress is slow - how frustrating! Praying for a quick resolution somehow, and that you can move on to rads.
Blonde, after all you went through, I am so happy to hear you are healing and making progress.
I'm working on the exercises too - My left arm is definitely got some tension and tenderness. I hope the "banjo strings" will go away.
Dogeyed - GG, I hope the ear resolves over time. You are almost done, and you deserve to feel your best.
Hugs to all.0 -
Dog--I have one too I think, but I'm assuming the doc will fix it at the exchange surgery. I'll see him next week and I do have a few questions. These TEs seem a little...well, not round in places. I hope that will all fix at the exchange.
Lily--I'm SO sorry! Ugh. I HATED the drains. What a pain to have them so long! Sometimes I feel kind of "engorged" like I felt when I breastfed. I wonder if that is some fluid collecting sometimes but I just can't see it b/c of the TEs. Hang in theree. It CAN'T be much longer!
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LILY, I am sorry they're still working on draining your fluid collecting, but you're down to what was my expected daily level of 20 cc, and yours is weekly! I want to ask you, can you see where it swells up with fluid, and if so, what does the area look like? My skin looks plain-colored, but it just bulges out there like a miniboob, very strange thing. I keep thinking my dogear, since it's where my old drains were, might be seroma like yours in there, when I see my regular cancer doc next month, I'll ask him about it. I keep thinking it will go down when body absorbs any fluid that may be in that ear, but oh, that would be so fine, to get it aspirated like you, and watch that puffed-up place go away.
PROFBEE, I won't be having any further surgery, no reconstruction, so I'm stuck with my bulgey ear, unless it is supposed to be aspirated like LILY. My ear is maybe a three-inch in diameter puffed-out place, it sort of sticks out like this: < only not as sharply, and the old drain scar-spot in the center makes it look like some sort of deformed third miniboob. UGGY! Well, I'll look for your update when you talk to your doc next week. At first I thought it was fat that leads around from the back to the side of the breast, it used to kind of match the other side where I still have a breast, but now I can see it's actually larger, altho I have been getting rads, so maybe it's more swollen. Sigh.
DAWMSON, I have the identical misgivings about taking that hormone pill, altho maybe my doc will give me something milder or only for two years or something. And my doc also put off really discussing it until after rads since I cannot handle but one disaster at a time these days. But I did a little reading, not a lot of help, but it explained well enough to me that I'll probably take it, since some hormones feed some cancers. But I have been thru menopause and do NOT want to have something like that happen to me again, I went out of my mind for a couple years, was a total wreck with my emotions, so even tho my fears may have some weight, I suppose I could take the medicine, and then if it doesn't agree with me, I could stop it, I guess. GG
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hmmm...mine is nothing like that. It just seems like oddly gathered where the end of the scar is. It seems just like skin and not swollen with fluid. That stinks about having to live with it, but although you're not doing reconstruction I can't imagine it would be a huge procedure to go in and fix it once the fluid is down. I know. The thought of another surgery is daunting, but if it would just be a quick thing it might be worth it for you to feel good. AT the time of my surgery I couldn't have cared about how it looked at all, but as time goes on I want them to look good.
Hang in there friends!
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