January 2017 Surgery Group
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Pamela 2016, my pre-op became fear-op because of all the extra "stuff" thrown my way! I have only met with my surgeon one time. At that initial meeting I was under the influence that I had the most treatable form of BC. That I probably would not radiation, I asked then about drains. I was told I would not need them. He also told me that I would have one incision that the BC was in perfect line for the lymph nodes removal. So yesterday I go for my pre-op and I meet with the NP that works with surgeon. I get to a small conference type room and wait with my husband. When the NP get in there she pulls out my path reports and things seem so much worse than what I had originally told. She pull out a drain with the long tubing and basically said I was coming home with at least one, that the radiation would start after the pathology report..(WHAT?!?) and if I need chemo...IF?!?! I asked if I would need chemo and from the breast biopsy report I was told no. I was also told at the time of the breast biopsy that my lymph nodes looked good. I did expect to have 2 removed so that was not a surprise. I asked about Brachytherapy like I have read in this thread. The answer was we don't do that here. So I asked why not? I never got an answer that really answered my question. Then I was told no driving for 2 weeks and no lifting for 4 weeks. I asked about that to because I have a special needs child that weighs 116 pounds. She was with me at the first appointment. She and my husband both were so there was no doubt what my life is like. I asked about my down time and 2 weeks taking it easy was what I expected. The actual hospital part was long but easy. I'm sorry if I made you worry it just wasn't what I was expecting.
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Wgraf- welcome! It might be kinda a blessing in disguise. I just read an article in reference to the Internal mammary nodes the other day, that they are hard to get to and DO NOT get looked at. In your case they did, because of removing your rib. It looks like your original tumor was on the right? Maybe this is a game changer per treatment. I would feel like you too, no doubt! But, it was seen and identifed. If I'm reading everything correctly. Hang in there, through all this crap!
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Vargadoll are you having a lumpectomy or a masectomy? If the lumpy, like me, I was driving two days later (I think you only have to be off the narcotic pain meds for that). I had surgery late Thursday and started teaching TKD classes that Monday. So basically 3.5 days later. Slowly, for sure, but yeah.
You can research other Radiation locations if you want to explore the brachy stuff. Although there's no way you could do anything physical with your sweet little girl, if that thing moves they have to readjust it and replan and it's a big pain. Mine has had air bubbles twice and I'm not doing anything this week. So standard rads might actually end up better for you even though it's longer.
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Vargadoll - I know that most doctors do not use drains for a lumpectomy but do for most other surgeries. My husband was surprised I didn't get one with my lumpectomy and now I wish I had gotten one as I have had to go into the Dr's office twice to have a seroma drained (200 cc's the first time) and it is already filled back up.
I think that the main thing is that you were given a set of expectations and now they have changed. That totally sucks and can be incredibly disappointing. It's one of the reasons why doctors often do not give possibilities without having all of the details. Please don't get too far ahead of the process! I met woth my RO today and HE doesn't do brachytherapy. After hearing from a couple of wonderful ladies here, I contacted my other doctors and asked for names of ROs that do... I am still waiting (it was just today), but I am hoping to get one and that it all works out. If not, I'l be doing 2 months of regular radiation....
I have no advise on the lifting thing ...you have to make sure to heal before you can take care of others. Keep your chin up!!
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fightingirl, I 💕 U too!!! Find the time for the PT and don't get discouraged if it takes a few weeks to see progress.... it will come!
Good luck to all the women waiting for results... worst part of all of this!
I spent the day sleeping so I could get to my bs appt without fainting... and still needed a wheel chair to get back to the car. She took one look at me and sent me home. Luclkily the er staff ran full blood cultures on me the other night so she could see there was no systemic infection beyond the strep.... but she reminded me that I'm not a teen aged and two major surgeries and a significant infection within one month is more than most 52 yowomen can recover from quickly. So back to my bed/prison until things improve. Getting impatient... hate feeling weak
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vargadoll- call your bs tomorrow, and ask that he calls you. You need to feel secure in this procedure.
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Vargadoll - the other thing is that you saw the NP. She may have a certain spiel she tells everyone. I know I was told I would probably have three drains (two on the mastectomy side and one in the reconstruction side) but when I woke up I only had two. I think they kind of give you all different scenarios just in case. They never know exactly what's going to happen when they get in there so they want to tell you every possibility.
But I agree; if you are having concerns about the surgery, call the office and talk to someone.
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will post some bits of my experience with cording and lymphadema here just in case anyone starts to think they are developing it and just to be aware that it can happen. I know I was not really told much prior to my surgery. PT was about 30 minutes of stretches and some exercises and pretty easy. BUT then, they took me into the room and started to rub and massage my arm... I was doing the breathing like a woman in labor!! They said they were going easy the first few treatment s to try and loosen my cords up. She showed me some things to do at home to help me get along faster. It was not pleasant but not horrible. It's funny because you lay on sort of like a massage bed with a sheet pulled up over you and you think ahhh I can relax...nope!
I cleaned my house with one arm and the hubby vacuumed for me so feeling like I have a little control again. Tomorrow is Friday and I have no doctor appointments!!! Celebrating that fact since next week I have 8 appointments! It's a full time job being a cancer patient.
Brca2chick, it takes time getting your head wrapped around the new normal and then we get the curve balls and have to adjust. One thing is for sure though...we are badasses even if some days we don't feel like it! Sending that positive energy right back at you.
Cowboy-up, yeah who wants to spend valentines with their doctor? Oh...actually I will be!!! I have 2 rounds of radiation that day but I think I'll be in good spirits because it will be the day before I'm done. I'll celebrate later in the week.
Love and light to all you beautiful warriors! Hope everyone is recovering, being good to themselves, and listening to your bodies!
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my $0.02 re:drains. I just had a lumpectomy and reduction, and they left bilateral drains in while I was in the hospital (I did an afternoon surgery and overnight in hospital). Then pulled them out a few hours before I went home. So depending on surgery and surgeon, even a lumpectomy girl might get them.
Dcbc- strep is the worst! Stay in bed and get that nonsense sorted. Don't feel weak - that's a brutal infection even without the stress of surgery, so it may take awhile to kick it. Let your body rest to help in the recovery. Lots of fluids and vit c!!
Fightingirl- glad you tolerated pt. I had a visual of Mohammed Ali using your arm as a punching bag, so I'm glad it was more tolerable than that! Treat yourself to some extra shuga, as winchimed would say, this weekend since next week for you is full full full!!
Pugsmommy, you better get that mammaprint back this week or we will ALL go ballistic!! Here's hoping for some good news, but yknow what? Even if it's bad news, we got your back. I think all of us are getting better with giving up some control and just rolling with whatever they throw our way. So if it's bad news, come to us for a big sob and we will give you a big hug, pick you up, and hold your hand through chemo. You are certainly not alone!
Chins up, ladies! We are not done til everyone of us gets the all clear. Teamwork!!
Xx
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dcbc, missed the post about you having strep. Goodness, don't feel week! Betewwen surgeries and stress our immune systems are all out of whack. Take good care of yourself friend.
Annoyingboob, you're so right. It seems we have gotten to the point since our surgeries that the curve balls are flying at some and it really is getting easier in many ways to accept that it's just part of it now. A good cry, a mini meltdown, and some good friends on this forum have got our backs and we will all get through it together. It really is not over for a long time for many...5 years of hormone therapy pretty much tells ya that! We are so lucky to have this place and eachother. I'm happy to be there for and be with you all for a long, long time. ❤️❤️❤️
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Has anyone been told 10 years of Tamoxifen or are you being told 5 years? My breast surgeon said they are starting to recommend 10 years. I haven't had my MO appointment so not sure if that is what will be done.
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Cowboy, my MO (who is about to be replaced, but yeah) told me that I would take "at least 5, perhaps 10" years of Tamoxifen. Sure hope I don't have huge side effects on it ... LOL.
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vargadoll, I had a lumpectomy with sentinel node biopsy on the 24th. I was not supposed to have a drain, but I left with one. My bc is in my left breast, very high and almost in my cleavage. Like chest bone area. Because of this location the BS actually made his incision lower on the breast and went up to get the tumor. So my scar would be below "gown line". And I'm glad he did, because it's going to be one hell of scar. It's about 5 nches long.
I only had the drain for two days. Surgery was tues, drain came out thurs. and it wasn't that bad. I slept most of that time anyway. I had read that some people were back to feeling normal in like two days after a lumpectomy. Not sure where that bs came from, because I am still extremely sore. Not needing pain meds, just sore. And very very bruised still. It seems like new bruises appear every day. But it's probably all because of the way he had to go in and lift the skin, fill in the gap, rearrange stuff.
But you will most definitely not be able to pick your child for at least a week, maybe longer. In my opinion.
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I haven't had my mo appointment yet either, but the tumor board I went to before surgery said five years for tamoxifen. I hate taking meds and he whole blood clot risk scares me a bit, but since I am grade 3 and went from clear mammo to 7cm of DCIS in 20 months I don't think I'm getting out of it. Still planning to ask if hysterectomy/oopherectomy would give same results. Not that I'm itching to have another surgery anytime soon. My bs surgeon said I could always try it and if I have a bunch of side effects then stop taking it.
Has anyone started tamoxifen yet? Curious what your experiences have been.
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I was told by my oncologist 5-10 years. I meet him again next Wednesday and I'm sure we will discuss again so will keep you guys posted. He didn't like when I told him I didn't want to rake the tomoxifen. Like you DCISinAZ, I might want to consider other options but I'd have a lot of research to do on that. Once I get through radiation, I will start to focus on the next steps. This is also assuming that chemo isn't my next step. Fingers frossed
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I'm finishing rads march 3 and will start tamoxifen shortly thereafter. I've read that hot flashes are treated with an ssri, and I'm already on one of those, so we shall see. But like dcisinaz, I'm more worried about blood clot and stroke and vision problems than hot flashes. But as with everything, I'll give it a go, and if I don't tolerate it, I'll stop. Would be nice to have that protective benefit though.
Dani, I'm one of the girls that felt good 2 days postoperative, lol. I'm thinking bc I had big boobs, so it's mostly fat and perhaps it's more painful for smaller girls? Also, they didn't touch my axilla, and for sure that seems to be the most painful part! But everyone is different. I do think that lifting a 112 lb child would be asking too much regardless of your surgery for a few weeks, varga. For sure for a 2 solid weeks at least you will need someone to help you help your child. I was told no lifting over 10lbs for 3 weeks. Of course at 1 week I felt like I could lift more, but you risk busting open your sutures and then an even longer recovery, so I just don't think it's worth it.
No easy choices for anyone.
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Dani - the differences in recovery time might very well have to do with the location of the incision. Mine was 6:00- sort of mid breast. Not a lot of nerves around there. I was teaching TKD classes 3.5 days after my surgery. Obviously, your mileage varied considerably.
I can well imagine that a long incision high up on the breast would be MUCH more uncomfortable than mine. Lots more pulling and shifting for starters.
I do concur about picking up the child, although anything that can be done with the OTHER side of your body would likely be very possible.
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damn, I wish I felt good two days post op! Lol. I actually have huge boobs myself, so maybe it does have to do with the placement of my lump. I forgot about the clock thing. Mine is 10:30. But I really thinks my slow recovery is because of all the rearranging he did in there, so I wouldn't have a divot in my chest. So for that, I'm grateful
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I forgot to ask, does anyone else get that stabbing pain thing? They said it would happen because of the nerve endings reattaching or waking up or something like that. And yowza, does it knock the wind out of me when it happens!
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from the reduction I feel like I have an underwire bra inside my chest at all times. Tightness. And for the incision around the nipples, I get twangs and clothes/shower sensitivity which is def more now 4 weeks postop than right after surgery, so maybe it is nerves regenerating. And I'm still a bit numb along lateral aspect of rightie. That may be permanent. Funny though, I'm starting to forget what boobs were like preop
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I have occasional stabbing like small stakes , but they are usually short intermittent stabs. Never bad enough to really put me down . But I have had them after lumpectomy and also after SNB . I am still sore from both procedures.
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Good Morning ,
Wishing LovesndlightinLA a good day in the OR . You got this girl and we are all waiting for you on the sunny beach. Hope everyone who is in the , "waiting Room", gets their good reports today . Weekend orders are to relax and enjoy life as we have worked extra hard the past couple of months . Enjoy life and family , that includes our fur babies . They are what its really all about. 🍩
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BeachBabyK-- so sorry that you can't get the radiation you want. I do knowpeople who go to another city and stay there for the week of treatment. Plus you can stay with Fightingirl like she said--lol!
Anooyingboob- Love the dice that always say no to everything!!
So I need some support. I called a good friend to let her know that I'm going to be doing chemo. All of my friends and family have been extremely supportive of me. But she said " I'd be hard pressed to do it. I mean where is the cancer?" What kind of a thing is that to say to somebody who has to do this?! It was so upsetting! Made me very angry actually. She thinks she's an expert on everything--you know the type. She knows nothing about oncotype dx tests or scores, nothing about my kind of cancer, or my genes. I think I'll go with the experts advice. The Drs and scientists who actually can predict recurrence rates based on experience. I couldn't even talk to her. I guessthis goes in be category of what not to say to someone who has cancer. If they tell you they need chemo, be supportive.
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Cowboy-up I'm in the waiting room with you among others. I already called medical records today trying to see in my Oncotype was back but they say I have to go there personally to get the report. Since I still can't drive I don't want to ask anyone to take me. I'm a nurse by trade and not good at waiting. I have wondered if I needed chemo for 11 weeks now. This waiting game is a nightmare. I am a planner and just want to get on with my life!! I guess today is one of those low days. 😔
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Hi all--got my pathology results back yesterday -- all is good. Nodes were clear and the rest of the cancer they found was DCIS and not more invasive. Best kind of news I could have received. Meeting oncologist on Monday to talk about whether I need the tamoxifen or not.
Now I've developed a rash under my left arm -- from armpit running past the drain opening. I took off the surgical bra in case that was it before going to bed last night but that didn't help. No fever. Anyone else have this?? This tissue expander is HARD! wow. Didn't expect that!
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oh 3Bears , so sorry you had to deal with that type of insensitivity. Thatvis the lastvthing any of us needs or wants. Those know it all types can be so counterproductive in our healing process.
You are going to be in the company of others here and in PA. Who are going through the same and being positive is always prevalent here among our sisters on this journey we live everyday .
I hope you have a great day and weekend
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So happy for you Vicwytch,
Congratulations on that sweet report . I hope your rash resolves . I had a rash where an IV attempt was made and it dried my skin but was very itchy for two weeks and is really dry there still .nothing worked until I put burts bee diaper ointment on it. Then it started to clear up . Have an awesome celebratory weekend
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3Bears, WOW!!! I am so sorry that someone would be like that. How awful. Don't you even give that person and their "opinion" any thought. Very insensitive. I know the type...I've got 2 of them in my life. My boss who goes back and forth between being super supportive and then thinking he knows things because he's known a few people that have had cancer so sometimes he is the expert. When I told him my BS said to take a week off after surgery, he told me how the girl that cuts his hair said she was back to work in a couple days. Then, I have the girl also at work who never shuts up about the people she knows with cancer and all the people that have died. For crying out loud, she came into my office the day after I was diagnosed talking about death! I almost told her to leave and never talk to me again!! I'd like to think most people mean well and it's hard to know what to say sometimes. Even I didn't know until I was diagnosed just how different every cancer/person/situation is. There are a million variables and no two are alike so you have the right idea...listen to your body and yourself and the experts.
Vicwytch, super happy for you! I don't know about the rash but maybe call BS about that just to ease your mind or handle whatever needs to be done.
WGraf, boy do we know! If I had to say what the worst part of all this is, it's that stupid waiting and not being able to plan your life! Way earlier in the post I had told all these girls something my mom said which doesn't always ease the anxiety but does kind of help with perspective. She said right now everything is fresh in your memory...you remember every detail of this experience clearly...someday though, you will have trouble re-calling some of it. Someone will ask you something related to your cancer experience and you may say...you know, I don't remember! Basically, it's a blip in our lives. A drawn out crazy blip for sure but we will take the good things we are getting from this awful experience forward and all the others will become distant memories. Hang in there...we are here for you on the high and low days. xoxo
All the best to loveandlight today! Enjoy the bungalows and see you soon!
Have a happy Friday my friends!
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a-boob: you're right, at some point you do start to get better at adjusting to this crazy process. Today my head is like: "if I have to have chemo, so be it." I know this sounds nuts, but sometimes I think I'd prefer chemo to hormonal therapy, since it's a short-term treatment. I've been told 5-10 years also...I'll be on arimidex probably since I don't have my ovaries. Thx for your support! Love your attitude & spirit!!
Cowboy-up: your news sounds really positive!
Vicwytch..loved reading about your great news!
Wgraf: I'm brca2 also & had a total hysterectomy with ovaries out a while ago. Also took HRT & here I am today although my BS assures me that the HRT didn't cause the BC. Water under the bridge now...You're going through a lot, that's for sure, but you sound like a fighter & we're here to support you. How are you doing on Arimidex? I'm sure I'll be taking it too....
3bears: I'm angry at what your "friend" said too! I find it very annoying when you share something & it becomes all about them...what they think, what they would or wouldn't do. Makes me want to say, "I'm sorry, I just need your support, not your unsolicited opinion, this is about me, not you, thank you very much!" Lol
Fightingirl: hopefully your cording will get better after only a few treatments. we both have MOs appts next Wed...I'll be thinking of you! Are you starting rads next week too?
Dani: hope you get good news at your MO appt on Monday.
Pyrrh: you're so right! There are so many factors involved in a chemo recommendation. I used to think if you had clear nodes, it would be smooth sailing! Those were the days lol. Hoping your subsequent tests confirm you won't need chemo...
Happy Friday everyone! Worked yesterday - chillin' out today!
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Well I got some bad news today. I have been dreading hearing my pathology results as I just didn't think they would be good and I was right. I'm officially stage 3. My tumor was 4.9 cm and in 7 of 17 nodes (I think that's what he said - I kind of zoned out). Ordered PET scan and echo. Seeing my oncologist next week. Definite chemo.
Very sad today. Wish I was joining the clean nodes club.
Michele
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