August 2011 Surgery Group
Comments
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Hi everyone started PT last week and what a difference. I even feel like the numbness under my arm is a tiny bit better (I realize its permanent) and they are doing heat ultrasounding to the cording I developed so by all means ask for PT. I have somewhat better range of motion. Had a Pet scan yesterday and result in tomorrow. I feel like I am on a rollercoaster! Just wish it was a fun one. Welcome to all the new ladies.
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I know what you are saying about the eating thing. Before I found my lump I was on the HCG diet and had dropped 15pounds--probably helped me to find the little sucker. I was off sugar for 5 weeks total as I stopped the diet but continued eating no sugar. Once I reintroduced some sugar I cannot seem to get enough of it. I was in the grocery store yesterday and almost burst into tears because I could not --at least in my mind-- find anything to eat that I liked that would be healthy
Anyway my husband reminded me how much I love apples and peaches and strawberries and yogurt smoothies with frozen berries I make myself...all natural sugar anyway. I have searched for the "why" part of this disease as I too have 1 risk factor...I had breasts. None of us should be so hard on ourselves for being "chosen" to deal with this disease. I am grateful in that I know my sister would never have the support to make it thru such a difficult bump in the road of her life. I feel strong surrounded by my new "sisters" on this site. You all build me up when I need it!Maggie
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Maggie, I'm laughing because I just went through the same crying in my kitchen and ended up making myself a smoothie with frozen fruit! Yum!
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I just had an ice cream cone and a turtle from Haydels in new orleans (ladies a must try if your ever here)
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I'm supposed to go to a conference in New Orleans this Nov! I'm I'm allowed to go, I'm going to try one!
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There are just a few things you must try while in New Orleans - Beginets from Cafe Du Monde, Turtles and King cake from Haydels Bakery (i think you can order these on line), a snowball from hansons snowballs, fried seafood (shrimp, cathfish or oysters) I like ACME in the French Quarter, a po-boy (almost anywhere and dressed means with letttuce, tomato and mayo) And any seafood anywhere - red fish grill on Bourbon and Mr. B's in the quarter are two very famous places and two of my favorites.
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Susan- I sometimes feel that milk letdown you are talking about! Very odd...
ProfBee- Congrats on the news! You'll totally kick butt with the AC I'm sure! It's not the most fun, but totally doable! Soon you'll be on the other side!
NancyJill- I thought since we eat fairly healthy (but SOOO guilty on the sugar!!), I have no family history, I'm young (31) and breastfed both my kids for over a year, that I was pretty good to go on the breast cancer front. Not true! I too found out that the biggest risk factor is simply being a woman! (and for my cancer, having estrogen....) No need to beat yourself up- you are going through enough. I say, do what it takes to get you through this part of it (if that means a little candy now and again or whatever). I definitely agree with BlondeLawyer on the small changes- so much easier to stick to! For my small change, trying to exercise more. Hard to do when the cardiologist just told me the Herceptin is affecting my heart... but I did go to my first Zumba class tonight and it was actually fun :-) Maybe if we all encourage each other, the small changes will be a little easier.
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I havent been around much....though I have thought of you all
My life right now seems to be even more full of Drs appointments and tests.:(
I feel so upset.....lied to thru this all...
After having a nuclear body scan and CT scans of my head, abdomen and pelvis I was told I have spots on my thyroid.....Now I was told last Thursday by my Oncologist at my first appointment with him...that I also have spots on my lungs. I was just in shock.
Tom and I both were sitting there in shock.
Why wasn't I told this????? Why was all this held back from me...and now being told this in bits and pieces?
I ask for all these scans so I could make a judgement over what I wanted to do BEFORE the BMX.
So I havent been around much...To much pain...To many appointments..
The swelling/fluid is finally going down.
The pain is finally getting better.
Blondelawyer I am so sorry for everything you and the others have been going though too:(
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Awwwww, DEBBI, I feel for you, child. Why can't you be left alone? Perhaps it will help you to know my nephew had bone cancer, he was 17 years old and it tore up my family, and his spread to his lungs... well, they engineered those spots out of his lungs, twice, and he is a 10+ year cancer survivor. Some cancers are by their nature aggressive, and if my teen nephew can go thru a half-dozen ops, so too can you. Whatever it takes to get that stuff OUTTA there. But I would just sit down on my front porch steps and cry a river if they told me my cancer had spread somehow, and two out of my three kinds can indeed kill me in a big hurry.
I got tired of all my appoints and duties too, and my surgery was painful too, even tho many girls say it doesn't hurt. I had even let my pain meds expire becuz I thought that. So, girl, even tho your pain has improved, you get you a week off in there somewhere, you get you some pain meds, until you can get it back together. I know, I know, you feel like you gotta go to all these appoints and time is of the essence, but for me, after surgery, after five months of chemo, I finally declared to my cancer doc I needed a week off and I wanted my pain meds back, "I can't take it anymore," I cried. So, they granted my wishes and I felt MUCH more prepared for PART 1,935 of my treatments. Oh well, you will do what you can do, we all care so much about your sweet self, and I pray the Good Shepherd will send you some angels and cut you some slack. Your sister, GG
Thanks for explanation, BLONDE, of my dog ears, I had heard of those things and thought that mine were those. I massage it periodically, hoping it will rub away. I'm SO glad to hear you got your last drain out, they are insufferable. And my dark circles, they are known as exhaustion. Smile. Love sisters, GG
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Oh, Deb, I am so sorry you got news like that. I think dog did a great job of expressing my thoughts. I just wish I could give you a big hug!
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I am 49, had a bilateral masectomy on August 31, 2011, Got my drains out on Monday (9-12). I am having some bleeding from the right side where the drain was. I wonder if anyone else has this problem. It does not bleed continuoiusly, but every 8 hrs or so a moderate amount of dark red blood comes from the incision where the drain was. I am using a Kotex to cover the area so that when the blood comes out it wont get everywhere. Its usually 1/4 covered with blood. I see the dr again on Monday and will let them know then. I am two hrs from the dr and do not want to go back unless absolutely necessary. Also, I am still using pain medication regularly. I am very sore and hard to take a deep breath and to move around. Is any else still on pain meds 2 weeks post bi mx? When I asked for a refill on monday I sensed hesitation from the nurse. I still feel I need them so that I can move around.
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I've been absent a few days, trying to catch up on work since I took several days off and have a major work project due next week. Thanks to everyone for your good thoughts about my final pathology. It really does feel like a huge relief to have that final info on what I have.
I'm going next Friday for my radiation-planning session. Not sure what that entails but I assume it's positioning for the radiation machines to do their work. I guess I'll start my treatments (6 weeks, 5x week) in October.
The feeling of swelling under my arm is gone and the numbness is either receding or I'm getting used to it. I definitely still don't feel completely normal under there, however. The scar itself doesn't hurt at all but the muscle under my arm feels really tight, as if I need to stretch it. I'm going to see if PT would help.
There's a woman I met here in my same community who was diagnosed the same day as me - she had a UMX two weeks ago and then had to have emergency surgery last week to have a hematoma drained. Today she is getting her TE put in. So much surgery and recovery - I really feel for all of you ladies who have had UMX and BMX and are now getting ready for chemo (or have already done it) since that is such a tough road.
Nanadeb, I'm so sorry for all that you have been through. You are in my thoughts.
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Oh, Debbi. My heart is breaking for you. That is just THE SUCK. You will get through it all, but for this moment...yeah, it SUCKS. AT the beginning, they told me oh like stage zero...woops...stage 2. It seemed at every turn the news got worse, but once you have the whole picture, you'll be able to move ahead and get this over with. As dogeyed said, for part 1, 935. (That made me LOL. It DOES seem that way).
Jana, I'd call and just ask. They'll tell you if it can wait until Monday, but you don't want an emergency situation popping up over the weekend. We're 2 hours from my docs too--I know the feeling, but just a call can't hurt.
Getting geared up to start A/C next week. Trying to answer all my emails, etc. I'm so behind in everything. Any tips for A/C???
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HI JanaJ I too had bmx with te's 8/31 and still really hurt. My drains were dc'd last Friday I didn't have any bleeding . Call your doctor asap better for them to tell you it is nothing.I am not taking any more pain meds I couldn't poop and that's not fun. I am now using extra strength tylenol and a large Bailey's and decaf coffee at bedtime.If you still need pain meds I hear ya if I could poop I would still be taking them also. I am so fed up with the pain.
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JanaJ - I will also echo the advice to call the doctor and ask. I also had BMX Aug 31 and had my drains out last Wed. Did you have tissue expanders placed at the time of surgery? I am told that it is more painful when they are. I am on tylenol once or twice a day, but I do not have expanders (yet). I did not have any leakage from my drain site (but do have a small seroma on my right - non cancer side).
Deb just wanted to give you a gentle hug. We are here for you and thinking of you.0 -
So sorry Deb...we will all be thinking of you and praying for your recovery.
I saw the surgeon again today and he will be placing my port to start chemo hopefully next week...(see insurance does not want to pay for chemo thread). He said I am healing well and that the burning sensation on the left arm where I had 18 noded removed is a good sign that the nerves will heal. That made me feel better. Got hair cut super short today and got pet scan results back ---CLEAN! I started to cry over the good news as it is the first good--using the term loosly-- news I have received in a doc's office since this all began.
Maggie
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Abatellik - how are you feeling today after class? I can't wait to get back into the gym and start an active yoga practice again!
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Profbee: I found A/C to be unpredictable--one week was never the same as the next. Nausea, fatigue, and mouth sores were my biggest SEs. For the nausea, stay on top of it. If you feel nauseous, take the meds. You don't want to end up vomiting and trying to stop that. Be prepared for quite a bit of fatigue. There were weeks were I slept most of the time. For mouth sores, there are meds that can help, so make sure to ask from them if you get them.
Good luck!
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Hi Ladies!
I got filled for the first time today! I got 80 ccs in each, and now I look like I have two hard hamburger buns strapped to my chest. And, wow, does this HURT! I managed to turn my right port upside down and backward, so when the PS went to fill them, he couldn't find the port and had to dig around with the needle. OW! Then he decided to treat it l like a breech birth, flipped the baby around, then got it right side up and filled me. I'm fairly black and blue. Sure hope I can get the ports out soon. After he saw how I responded to him digging around today, he decided I need a little light sedation to handle port removal. Geez, you are going to be cutting some thing metal out of my body, could you get me a little goofy? Or I'll have to have that Bailey's Maggie suggest!0 -
Oh gosh...and thanks all for the congrats...good path news is great.
Eema--I'm cringing at your breech boob.
Blondelawyer--thanks for the advice. I totally hurled on the Taxol/Lapatinib and they kept saying it was a stomach flu, and then the LAST week on it they admitted that it WAS the meds. ugh. I took like everything I could not to be sick and I was, so I'm worried about the way they say they can manage the nausea.
Mags, what chemo are you starting? I am starting A/C on Weds!
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Today got my PET scan results negative Yippie. So I started on hormone supression therapy today. Decided no chemo. I was going to do phase 3 of the study SWOG utilizing oncotype for node positive pts but I don't want to leave my dr. Anyway I figured if they are at phase 3 of the study for no chemo for those with less than 3 nodes positive and a low oncotype score it is good enough for me. Its either in my head or I'm already nauseated and having hot flashes. And very sad news my daughter miscarried today. Overall a very overwhelming day! I am loving Physical therapy and cannot wait to get my range of motion in the radical side back!
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Oh, Dixie. I'm so happy for your scan results, and I'm so sorry for your daughter's loss. I had 3 miscarriages (two before the birth of my son and one after). So, I know the pain. Best wishes to you and your whole family tonight.
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Profbee- I do agree wtih BlondeLawyer that A/C was unpredictable- one round could be worse and one better. But I found I generally felt good the day of and the day after chemo, then the next 3-4 days achy (from the Neulasta) and just generally down and yucky feeling. I was never really sick but by the end the smell of food really got to me (as did the smell of skunk, since that is what the heprin (sp?) tasted like to me.) Overall though not as bad as I thought. Just had to remind myself "there is an end to this. It is only the chemo that is bringing me down..."
Bobeena- a bit sore today; not too bad. I'm not all that in shape though so that's probably why :-) I was actually surprised how much I was able to do. Hoping it's the same for all of you!
Going for a stress test tomorrow since the Herceptin (or the chemo??) has done a number on my heart. Hoping and praying the function returns.... so that I can go back on the Herceptin. The things we go through to get rid of the monster called cancer!!!
Dixiebell- so sorry about your daughter! In my thoughts and prayers...
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On the conversation of diet I have a friend who changed to vegan diet, juices, does visual therapy and accupuncture, sees a natural medicine physician and attends healing services and no other tx for her BC. Believe it or not her tumor is shrinking. She even opted out of any surgery.
For me I believe 16 years of synthetic estrogen after a TAH at age 32 and working night shift for 14 years (studies show night shift workers have a 50% higher risk of breast ca than non night workers) did me in. I'm trying to eat better but I don't have very good willpower and would stave to death as a vegan since I hate most veggies. I could never be as dedicated as she is but it goes to show you different things work for different people.
Abatellik good luck tomorrow will say a prayer for you tonight
Profbee thanks!!!!! I will also say a prayer for smooth sailing with your treatment tomorrow and the days that follow!!!!!
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BlondeLawyer:
Had my surgery 8/23, three and a half weeks ago and the incision areas are still extremely painful. They were actually the best around day 12, then got worse. I just wish they would heal! I am a teacher and have to go back to work next week. If I lie perfectly still they don't bother me. I think it is partly due to a heat rash kind of thing--they are still large enough after lumpetomcy/reduction to create a sweaty crease at the incision when I stand, and every bra band hits right on top of these horizontal incisions running under both breasts. The cancerous breast is hard and warm to touch, noncancerous reduced side has a red rash but otherwise no complications. They put back on antibiotics last week but I have not seen any improvements, I even started running a fever again. I should add that it is not normal for me to get skin irritations easily. And I am supposed to start radiation therapy in a few weeks too!
Anyone else with surgery 3+ weeks ago still experiencing healing problems?
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Dixiebell horay on your PET!!! Sorry to hear about your daughter though. I start on tamoxifen tomorrow. Really not looking forward to that.
Today was my second day of OT and I can already see an improvement.
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Janaj: I had BMX with tissue expanders on8/15. I just stopped taking Dilaudid on Sunday, 4 weeks after surgery. I had tried to stopping a couple times, but still had too much pain. The sugeon was able to get me to 2/3 of my normal size (34C) in the initial surgery. I had my first fill of 50ccs last week, 3 weeks post surgery. These two things may have contributed to my need to stay on the pain meds so long. My first fill ended up being really painful, otherwise I may have been able to stop taking them a week earlier. A short time after I left the doctor's office, it hurt to breathe as I had a lot of pressure against my ribs from the TEs. I think it's normal for the nurse/doctor to be hesitant about refilling prescriptions for narcotics. If they totally deny you, maybe ask for something that isn't so strong. Are you taking muscle relaxants as well? I am taking 1000 mg of Robaxin 3x/day, this really helps with the muscle spasms. Also, since Dilaudid does not have Tylenol in it, I was able to take that along with the pain pills, and it really did make a difference.
As far as the bleeding, I would call your doctor today. You don't want to run the risk of infection, as that could create more pain. Take care!0 -
Thanks for all responses. So good to chat with women who have "been there, done that". I did not have TE. My PS wanted me to do reconstruction after I healed from the Bi MX because I had a lumpectomy in 09 (had IDC stage 1, grade 3, tumor .08 cm, rt breast). At that time I had 4 rounds of chemo and radiation X 6 wks. Since my right breast was radiated, she said my have trble healing. At this point looks good though. When dr took drains out Monday he also gave me ABX (Keflex) for infection, sites were red & painful. After taking this for 3 days pain is much better. My pain is better now so may not ask for more pain meds. My bleeding has stoped for now also. So I feel like I am making progress now. Hope to start reconstruction 7 weeks post MX.
tigerw0man - no, not taking muscle relaxants, never offered to me. Maybe b/c I don't have the TE. But pain is better today, so more hopeful I won't need pain meds.
profbee - Hope a/c goes well next week.
maggiestatas - I know what you mean about the poop thing. It was several days after surgery before I could go and boy was it painful. But I have been eating those sunsweet prunes & that helps and drinking plenty of fluids. I have heard so many women say the worst thing about their masectomy was the constipation afterwards.
treegirl - sounds like you may be having another infection or the ABX is not getting rid of the infection. I would tell the MD.
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Yeah, I agree w/ Jana--Treegirl, maybe you should call your doc's office before the weekend. I hate the sound of a fever on antibiotics. Feel better!
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janaj did you have a recurrance in the same breast or is it a new cancer? I did not quite understand the story. I saw you went through rads and chemo in 2009. Were you on hormone suppression therapy? I am so sad to hear your story how many times must one person suffer. Prayers for you tonight. Oh and I had diarrhea after my surgery for 2 weeks so I guess not everyone gets constipated!
flwarrior started on Arimidex yesterday. So far dry eyes, nausea and dizziness. No pain. Oh and hot flashes like crazy. Can't wait for winter!!! Let me know if you experience any side efects.
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