August 2011 Surgery Group
Comments
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Wow, RangerMom! You go girl! I can barely leave my house, and can't leave by myself yet. Did you have reconstruction?
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Great job Rangermom! I'm also 2 weeks out and am walking about 3 times a day and doing my BS-prescribed arm exercise/stretches.
My chest looks like a mess and I'm worried about how I'm going to look. I still have 8 staples in. The nurse yesterday said that I have a "dog ear" and I'm worried about that. Cancer just keeps on giving doesn't it!0 -
abatellik: I had fluid drained on Monday and I honestly did not feel a thing. And I usually feel everything. It hurt like heck when he pulled the drains out but I didn't feel anything with the needle aspiration. He told me that the fluid will likely accumulate again and just not to worry about it. He said it won't hurt anything but there are risks with having the fluid taken out.
RangerMom: You are doing much better than me! I'm still sitting around. With the fluid I'm afraid activity will increase it. I'm doing a little walking and my arm exercises but that's all. I also chase after my kids and make their breakfast and lunch so I guess I'm still doing a lot.
So, How long will I still have pain? I still feel like I need to take pain medication. Not the prescription but I still need something. I guess I'm frustrated because I feel better and want to start doing more but I can't. I get very sore by the afternoon/evening and I wake up at 3:00 or 4:00 in the morning with pain. How long, on average, does the pain last? Also, when have you or do you plan on driving?
I have my 3rd surgery on Friday. I'm having a laparoscopic oophorectomy outpatient. I know this will set my recovery back. I'll be tired again etc. I could probably start driving this week but what's the point if I'm going to be back out of it again.
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Tlaquepqaue - I still take a Vicodan every once in a while. So take the meds as long as you think its helping, that's why they gave it to us, right!
Today I went to the mastectomy store and got a front closure bra with "fluffies" so when I go back to work I've got a little something to fill out my shirts/dresses. Someone asked if I had reconstruction, and no I can't because I've got radiation coming up next. I have to wait about 9 months after that before I can do anything. Today was a great day, seeing all that's available to help me look normal. I feel much better. It was hard to go by myself so I recommend taking a friend with you for moral support if you can.
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Hi, I had a lumpectomy Aug. 2. It was actually less painful then the biopsy. Starting 6 rounds of TC Sept. 8. Nervous, but this place gives me a lot of hope and comfort.
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I posted this on the Stage II sisters group, but thought it was important enough to copy it here.
So, my doctors were calling me a Stage II, but the NCCN guidelines consider me a Stage 1b. I'm not going to argue with the doctors, but there are minor differences that can change a treatment plan. I'll still call myself Stage II (to be safe), but ladies... check out this website below:
www.nccn.com/images/patient-guidelines/pdf/breast.pdf
I was amazed at how they can classify each little piece of the final pathology report and show the guidelines of treatment. Tomorrow I will get my Oncotype results, but I also need a 2nd opinion on my pathology as it was a bit ambiguous. Not what I wanted when it came to decision making. I feel there is some controversy as to whether my lymph nodes were positive or not, but I'm trying not to be so concerned at the moment. Anyway, check out the website. It is the National Comprehensive Cancer Network. It may help some of you in your decision making too.
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abbelitllik-I sent you a PM about the draining procedure. I have had it done 4 times in 10 days so I am probably the expert on it. And Happy Birthday to you
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Rockym: My original diagnosis was IDC Stage 2 because of the size of my tumor. However, I went to a bigger hospital with a large breast health center for a second opinion. They looked at the original pathology slides and disagreed with that diagnosis. I was told there was no actual cancer found, just atypia cells. The bigger hospital then sent the pathology slides back to the smaller hospital and had them take another look. They ended up agreeing after that. We went ahead with the lumpectomy to get a better a look and determine course of treatment. The pathology from that surgery showed it was just DCIS with no invasive.
Bottom line: second opinions are very important. Thanks for sharing that document.
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TLAQUEPAQUE, you were asking in your earlier post about how long the pain goes on. I got me a prescription of hydrocodone and at first took two or three a day, and then after a week, was down to one a day, and the third week I was working with halves. The pain gradually subsides, mobility returns to a good degree where I can use my left arm with most things. I had swelling in upper left arm and it is almost gone. The medicine allowed me to move around better, especially since I injured myself in the hospital and yanked the drains and incision a little.
I could not go out in the yard to "exercise" (walk to the gazebo or water bushes) until the first week was over and they took out the drains, so maybe ten days after operation I could stroll every other day. I finally drove the car a little ways with husband another ten days after that. When I drove across town to the hospital yesterday (almost one month after surgery), my left arm got rather tired. But keep in mind, I had some level of pain pills to get me thru all of that. So, when you get your other operation on Friday, you could ask for a bottle of pain pills. They have mild ones and stronger ones.
Also, a few days after surgery, I DID do some very simple range of motion exercises in my upper body, they gave a little list to me to follow, I did them haphazardly, especially when my muscles were so locked up everywhere. It's basically just a very mild stretch every whichaway, most of them supporting the bad arm, including pulling my shoulder blades together, which feels really good to my wrecked-up back from a long time ago.
I also feel the worst in the morning and evening, can't do a thing. And a couple times early on after surgery, I also woke up early from the pain, had forgotten to take something before bedtime. And every time I do a little walk, the next day I'm wiped out, so that's why I "exercise" only every other day, even now. But I still do my range of motion movements on any day whenever I feel sore.
GG
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tlaquepaque, Thanks for your input. I'm trying to figure out where to have my slides sent. I'm not sure anyone in my state is a "Breast Pathologist" like some of the larger states. Yikes... this gets so scary and frustrating when trying to make an informed decision. Can't these doctors look at us in more of an individual fashion and not just a breast with cancer? Also, how come we have to be the ones to question our pathology/treatment plans? Shouldn't the doctors be doing this for us? I didn't go to medical school!
Your situation is proof of the power of the 2nd opinion. Thanks!
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Rocky, I totally hear you! I hated having to make so many decisions (and there are still more to come) when I just wanted someone to tell me what to do! But, looking back, I'm glad I made the choices I made.
I'm thinking of you all, and so proud of all of us for supporting each other through this tough time. I am one week and one day out from my BMX with tissue expanders. I got my drains out today. I'm still sore, but just on Tylenol (and antibiotics). The skin around my drain sites looked red to me and was irritated. My visiting nurse said it was fine, and the doc today said it was totally normal for the skin there to look "angry." But I did NOT see any yellow. That would make me wonder.
I left the doc's office forgetting to ask questions about limitations (driving, reaching up, etc.), but he did say that I STILL can't shower until the gauze he put on the drain sites is dry for 2 days. UGH. I CANNOT WAIT to shower!!!!!
Love and health to all of you!!
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I put this under the wrong thread! So sorry if you read it twice, I'm blaming it on the cancer that I no longer have:)
Hi Ladies,
Hope everyone is doing well! I saw the PS today and he said that I am not infected (yay) and I am swollen, and we have to get my pain under control before he fills me. He says I will probably only need one fill since I am pretty good sized right now (350 on the left, 400 on the right!). He doesn't want to hurt me and says he is probably going to have to dig around for the ports (ow!). He also says I have to bring my PCP into the picture. I have an appointment with her on Friday, but she is the one that "forgot" to tell me I had a bad mammo until I happened to ask about it when I was in for a sore throat 4 months after the fact, so I really don't want her to have any say in my life. She also never called after my biopsy or lumpectomy. Maybe I'm being too hard on her, but I want to tell her to her face that had I had a different type of cancer, 4 months could be critical, says my MO.
But the good news is I am healing and will be able to get filled in a couple weeks, and maybe even get some nipples before October, when I'll go for the ooph and hyst. Kmur, the come from WHERE? I thought he was just going to twist up the skin on my new boob. Now I have to find out how I'm getting nips! PS said something very funny-- they are not mechanical, so he doesnt make them too protruding or I will have permanent THOs! Learn something new every day!
I'm going to eat some chocolate PB Haagen Dqz. Be well, everyone!
Xoxox
Eema0 -
Went for my post op today and got 2 of the 4 tubes taken out...yeah!! and half of the staples. The report was as good as we could have anticipated with only 3 of 18 lymphs affected and no vascular invasion....soooo glad to hear that..officially stage IIa now.
Maggie
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Rocky, I definitely agree about not being treated like we are all exactly the same! I am trying to make a decision about whether or not to take Tamox based on my HER status and all I am being told is "we recommend the tamox to everyone who is hormone positive although it is less effective in HER2+ cases" (what about the fact that it could be harmful? I am not EVERYONE!!!). Sorry just needed to vent a little.
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I'm sitting here crying (and I don't do that often). If the cancer doesn't kill me, the decisions surely will. Went to my Oncologist today and my Oncotype dx came back a 22. Couldn't the damn thing be a 40 and then all would be easy? Also, I'm having the doctor send my slides to Johns Hopkins because although the final path said 2 of 6 nodes were positive, the pathologist called the darn things "possible nodes." I am soooooooo ticked!
Onc says he would change my chemo plan to only T and C, and not the full TAC (I just think he really wants me to do this), but if for some reason those nodes aren't really positive the whole game plan changes.
What kind of idiotic tissue reading scientist calls something "possible?" Johns Hopkins assures me that they will tell me what the heck it is, but of course I am still in limbo. Getting a 2nd Oncologist opinion next week, but I'm almost 47 and have a 13 and 9 year old and am starting to think I'd kick myself if I didn't do all I could. On the other hand, I am so healthy right now. I've never been sick in my life except for a cold every few year and I am terrified of medicines, SE and this whole damn thing!
Thanks for listening.
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Rockym: That is a tough decision. I think getting a second opinion on the pathology and talking to another doctor will help. It helped me to get perspective because each doc has a different style. They all follow the same standard of care (we hope) but each present it in a different way.
I'm thinking about trying to drive today. My pain has lessened and I think it will be good. Unfortunately, tomorrow is my oophorectomy so this is my last chance to drive before I'm grounded again. I'm thinking shoe shopping.
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tlaquepaque, Thanks for your thoughts. It's morning and I'm feeling better. It's great that you have already had your kids since the ooph. will zap that. My first son was born when I was 34 and my daughter at 38. They say not so good when it comes to cancer. Who the heck would have known. I'm fine with getting menopause over with, but this business of chemo wears on me.
Glad you're feeling better. "Retail therapy" has helped me a lot these past couple of months. I never used to do as many nice things for myself. It was always for the husband and kids, so now I'm moving into the ME stage. Good luck tomorrow!
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Rockym, Yes, everything always seems worse at night. Glad you are feeling a little better. A clear head helps with decisions. I laid awake at night and cried for days when trying to make treament decision. It's so hard to know what to do and then to pull the trigger even when you know what the right thing is to do. I did have my kids young and now I'm thankful for that. When the doctors asked if I wanted to preserve fertility I was able to say no even though I'm 31. I did breast feed both of them. A total of 2.5 years. I asked if that offered any protection against the cancer and I was told there is no way of knowing but it possibly could have kept me from getting breast cancer at 25 instead of 31.
Is anyone here going to get a breast prosthesis after BMX even with reconstruction? I am starting a new job. I signed my contract before the diagnosis and thankfully they are holding the position for me. It will be some time before I look "normal" so I'm wondering if I should get some silicone prosthesis to wear in the meantime. I don't know if insurance will cover since I'm having reconstruction and honestly, I'd skip it if it weren't for the job. There is a boutique at the breast health center.
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tlaquepaque,
I KNEW we had a lot in common- shoe shopping helps everything! :-)
With the TEs and the expansion they did during surgery, I am about an A cup, so for me, prosthesis don't make sense. I have a smaller chest right now then I did, but most people are surprised that I don't look like I had a mastectomy. I guess it all comes down to what will make you the most comfortable at your new job. If you feel like people are staring at you(even if they aren't) or that you owe them some sort of explanation, then you could be distracted from your job or feel bad about yourself. That is certainly the last thing you need, right? In my opinion, I guess it never hurts to try them on and see what you think.
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Two day ago my 6 year old said to me, "Eema, your boobies are just kids. When are they going to grow up and get big?" My DH and I couldn't contain our laughter! I thought I was pretty full (350 on the L, 400 on the right. ), but I was a 34 DD, so he's used to something bigger. Anyway, my point was that if he notices I'm smaller, I wonder if everyone else does, especially in summer when the clothes are tighter and less bulky. I've never thought about a prosthesis, but I suppose it Isnt a bad idea. Or the "flurries" that came with the cami...
Shopping helps everything! My cousin sent me a gift card to Victoria Secret! I've never been able to shop there in the past, I can't wait to be full and these Fing ports out of my body so I can get some cute lingere to match my baby boobies (as my DS now refers to them).0 -
abatellik, that makes sense. I guess I'm about a A cup now but I'm not sure. I was a D cup to start so it is drastically different for me. I can't wear the same tops as before surgery. I'm thinking of just getting some ruffly tops to wear or big belted cardigans. I have broad shoulders so a smaller chest is not proportionate on me even though I'm kinda liking it. It's very slimming. I called and prosthesis may not be covered by insurance and are $320 each. These are specially designed for women having reconstruction because they are adjustable somehow.
I'm putting off driving for another week. A friend offered to take me shopping today. Yay!
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What is Oncotype and what does it mean? My BS hasn't mentioned it. I have a final post op with her tomorrow? Thanks
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I agree that things are worse at night. One of my good friends told me that I was not allowed to do any sort of cancer-related research after 5 pm and she is right...I get myself all worked up and things somehow seem more manageable in the morning. Treatment decisions are so hard, especially since there is not a "right" answer. And with breast cancer it seems like all of the decisions are made so quickly. I was diagnosed just 4 months ago and have already done chemo, had a BMX, and am now scheduled for rads and more chemo. It is all so overwhelming.
I am thinking about prosthesis before reconstruction since my BS said I would have to wait a year before reconstruction. I don't know though. I was a DD before, so this is all so different.
How are your incision sites looking? Mine looks absolutely horrible! The BS ended up having to take all of my skin on the cancerous breast so he had to pull up my skin from the stomach and down on the chest, so I think that is part of it, but man do I look awful. He saw me on Monday, so it isn't an infection or anything. I am worried about how these are going to scar and all of the weird lumps that I have. I'm not sure why I care, but I just feel so disfigured.
In good news...one of my drains is definitely coming out tomorrow. It could have come out today but I decided to hold off in case my right drain decided to cooperate. So far no lucky, I'm getting about 50 cc out of that one. I'm bummed that I will probably have to keep that one over the long weekend. The BS said that most surgeons would put 2 drains in where I have the 1 because of taking the whole breast and the lymph nodes, so maybe a little more drainage on that side is acceptable...wishful thinking
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RangerMom: Oncotype is one of the tests that oncologists use to determine whether it is likely that your cancer will recur and is used to inform the decision on whether or not to do chemotherapy.
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Can I join this list? I had partial mastectomy on right breast; reconstruction/reduction on both sides 8/23 along with removal of one sentinel node. I am glad I found you all as I sit here recovering wondering if my feelings and symptoms are normal.
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Tlaquepaque- I had no idea they were so expensive, wow! Hoping and praying all goes well with your surgery.
Blonde Lawyer- They took quite abit of skin from me since I have IBC but just glued abd sutured it all up. The glue is starting to come off now which is weird to see the scars. I try to just remind myself that it is not permanent, but sometimes it is harder for me than right after surgery because now it seems more real... on the other hand, when we are older, no saggy boobs for us! :-)
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I had 2 drains on each side for a total of 4. One still had output but the PS took it out anyway. I have some swelling and sloshing of fluid now but was told not to worry about it.
My incisions actually look better than I thought they would. The one side was prophylactic so it looks really good. The right side has a T shaped scar. To get all the cancer he took more skin out from the lumpectomy site and then did the mastecomy so the incision goes across and down. Other than the swelling I think it looks okay. I mean, realitvely. I do have a plastic wire sticking out one side.
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@ treegirl: I added you to the list. Welcome!
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Interesting, I thought I was the only one whose 'cancer' side looked freakier than the profy side. Right one looks like nothing happened to it (except I am a Barbie doll with no nips) and just has one line running straight through where my nip used to be, the left, cancer bag left me with less skin, so it is smaller (50cc's smaller!) and the incision looks freaky. Blonde, I wish I were there to give you a hug, you have been through so much! Of course, we've all been through quite a bit or we wouldn't belong to this club. Tlaque, did you have immediate reconstruction?
OK, my MIL just brought home my DS, and he's WAY sugared up! Gotta go! He's singing songs about the potty, I know he's had nothing but junk to eat today!
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