June 2010 Mastectomy
Comments
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Lizzymack - Her- with Est/Pro+ is the best combo to have. Her + means a more aggressive cancer. I found a chart, somewhere on the internet, that showed all the possible combinations of these three factors, with long term outcome for cancer recurrence, and the combo you have is the best to have. So thats all good news.
SPeech - I can't believe you're going to a conference/workshop next week. We had our surgery the same day and I don't think I could do it right now. Good for you!
Re: pain meds, after trying early on to get off the pain meds you all (and a few family members) convinced me that this is precisely what those drugs are for. I am now just listening to my body and taking as needed, probably about 3-4 (725) hydrocodone a day (I split them in half). It really does make a difference and I decided why suffer? My BS also gave me a script for xanax pre-surgery and I actually quarter those pills and take as needed. I have some wierd pain in my rt wrist when I reach my arm out - almost like "funny bone" pain. Anyone have anything like that?
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Hi Ladies
Great to read everyone's thoughts, encouragement and information and advice. I don't have much time (getting ready for my trip--leaving early am tomorrow). I wanted to throw something out there because I have read on this and another forum (on menopause) about Effexor.
My PCP prescribed this for me, too. I thought I would do some research about it and one item was of concern for me: getting off Effexor is difficult for some people physiologically. I have also read that doses need to be increased to be as effective as when it was started. Even with the very low dose that is prescribed for hot flashes. At Mayo (where I am treated), Effexor is recommended for managing hot flashes. So my question is...what do you know about this drug and its effect on the brain? What do you know about its physiological effect on the brain and body over the long term?
I would love to get hot flashes to stop--just not sure if this is the way for me.
stlcrdsfan My hot flashes have eased up since my oopherectomy on 6/2. I stopped hormones on 3/27 and had a major increase in HFs for a couple of weeks. Then they waned a bit and became more manageable. Then I had the ooph on 6/2 and within a week back again. Now I am only having maybe 1-2 a day if that. I am 51 and probably was about halfway to menopause when I had the hysterectomy with BSO.
I have also noticed triggers for my HFs...high sugar foods (ice cream, cake), dark red wines, stress, thinking about stressful things, fatigue, heat sources.
Look forward to hearing about what you ladies know about Effexor---some of you are great at research and have the ability to dig up important facts quickly.
May you be blessed you all with something wonderful today!!
Sending my love and hugs to all....what would I do without my sisters?
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Speech: about 5 years ago when I was in the heighth of peri-menopause and having horrible hot flashes, I couldnt' take any estrogen due to hx of DCIS so researched and actually tried to get my doctor to prescribe effexor for me. she didn't, but I would have taken it in a heartbeat...it is actually an antidepressant, when you go off of it you just can't stop cold turkey, you have to do it gradually as w/any antidepressant. It is one of the few antidepressants that does NOT have weight gain as a side effect, also a plus. In addition it is supposed to increase libido, rather than decrease like many of the other meds do
. Thats all just a layperson perspective....but it seems like a good drug to help with hot flashes.
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jblscw: thanks for the information--that's consistent with what my doc told me. I'd love to find out more from people who took it--how it helped and then what happened if they weened off.
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SPEECH: I took Effexor years ago for depression. The side effects I did have were a decreased libido and problems with orgasm (hope that's not too much info). After I was on it for 7 years, the doc suggested I switch to something else so I did. I didn't have hot flashes back then, so can't speak on that but wanted to share about my side effects with that drug. Of course everyone is different.
It is sunny and a little cooler here. A friend called last night and asked if I wanted to go to lunch, so I asked if she would take me to the grocery store after that. Yay! Trying to stay positive and get my faith and hope back to where they were instead of sinking into feeling sorry for myself. We can beat this disease ladies!!
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The dose of effexor for hot flashes is half of what it is for depression. I have never taken a pill for depression in my life, that is not to say I could have, or should have
I asked three doc's about it and the one PA made me feel great: every patient she says comes in here post op with a list of meds is on something like that! No worries on my end! My weight is going down post op and I need to loose ! I am happy to be on this low dose for hot flashes. Last night was the longest sleep in 4 weeks for me! Also, the rain is so good after the long week of heat...it was nice nice to sleep in on a Saturday and let these incisions heal! To ALL: Make it a great day , as much as we can, considering!!
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JBL: thanks for explaining that combo of ER+/PR+/HER2- is the best I can have...very good news indeed! Also, about the pain meds, I think I have told you all I have a very long term relationship with my GP and he would tell anyone he had trouble getting me to take anything...ever! As for this surgery, 7 hours, and the pain meds, even I am amenable. I do what you do which is take the 7.5 vicodin and cut it in 1/2 so I end up taking 1.5 to 2 pills per day, depending. We have NOTHING to feel guilty about with the pain meds. We have enough to deal with collectively never mind trying to do it in pain out of some misplaced concern for keeping our "Wonder Woman" complex!!!!! I also spoke to the VNA about our becoming addicted and she said first, with the nominal amounts women like us take, we would have to be on them a long time to even be near having a problem and secondly, we are NOT using them to get high but rather to anesthetize ourselves from the pain and she further explained the "addiction" comes from seeking a "high" from the pills which we are unequiovacally not in that category either. Girls...take a few a day and give yourselves some relief! It is not going to hurt and certainly not as much as going without does! I was also told valium has muscle relaxation properties and this is why it is also beneficial to take, especially during fills.
JSmiley: go to lunch, have fun and don't get down. Do you know we are the luckiest ladies on the planet? We need to thank our (joy!!) lucky stars that this was found and that we are on the path where we don't have it any longer. There are so many women leaving us each year and I think it is largely because they just aren't getting themselves checked regularly (due to lack of insurance or interest etc...) and then there are those too old to have the surgery we were able to and strong enough to benefit from. We have to wake up every day and be thankful our health insurance, our wonderful doctors and ourselves for getting checked and that we are the lucky ones. Now lamenting the passing of a body part is hard and I understand that but for me, bidding those fat sacks goodbye was not hard! We now will have fake boobs, albeit a little scarred, no more bras, NO MORE MAMMOS (SUPER BIG YEAH!!!!!!), no more knee warmers and we can near permanently scratch this off the list of things to be worried about! We have met nice friends through this process on this board and in our travels through the hall of medicine; I personally have witnessed people be more kind than I thought was possible so really, at the end of the day, try desperately to remind yourself we have nothing to be depresssed about and everything to be grateful for.
Would life have been better if we did not get this? Sure but at least we got a kind that they are having a lot of success dealing with and curing. My poor friend at work had cervical cancer (just about the worst b/c of the potential to spread right into the female system) and had just returned to work when I left from her bought. More to this point, I try to remind myself it could be much, much worse.
I hope you all have a good day...I just woke up!!!!!!!!!! I did a few things yesterday so I knew I was going to be knocked out today!!
Liz
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Hi Ladies, I tried to read all the posts to catch up. I have a few comments.
Body Image - My first mastectomy was in Nov 2008 and I did not get the tissue expanders until 2 weeks ago so I lived for a year and a half with one breast, and used a prosthesis. Having been through that so long ago I can tell you that the scars we all see in the mirror will fade away in time. My scar from the original mastectomy had turned into a very thin white scar over the past year and it was barely noticeable. The scars will look WAY better in time. They look completely different once they are all healed and faded a bit, took mine about a year before I started to not notice it so much.
Tamoxifen - Just wanted to say if anyone does have to take it, some people don't have side effects, and most of the side effects go away shortly after you start taking it. I had a lot of hot flashes the first month or so and then nothing since. I do have the vaginal discharge some people get with it, but it's only a little annoying. Every now and then I get some joint pain in my hands for a few days and then it's gone. I have been on Tamox for 15 months and I don't really have any side effects at all. I take it at bedtime and I wouldn't even know I'm on anything. I was 33 when I started it, and still have my periods. That's one thing that won't go away! lol.
Expanders - I find that one expander feels like it's not even there, but the expander on the right side is uncomfortable and painful when I walk around. If I am laying down or sitting in a chair leaning back, it feels fine, but when I am walking or standing it kind of feels like the skin is burning or painful on the side where your cleavage is. I think it's just the skin stretching, but not sure. Feels like the expander is pushing on the skin pretty hard and when I push on the expander right there, the pain does subside. Considering the pain goes away when I take the pressure off it, I would say it's just the skin and muscle stretching. I go for my first fill on Thursday, pretty exicted!
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HER2 + maybe a more aggressive cancer but it is also highly treatable with Herceptin.
case in point - myself! Total chemo response
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StCards: that is what I mean about us being lucky. Early detection, no matter what kind you have, is the key. The medical community seems to know how to treat all varieties successfully.
You guys, I did not want to admit this part but last night there was an elderly woman going into the store in front of me and she sort of tripped and nearly lost her balance. Well, and let this be a lesson to you all, my natural reflexes kicked in and I attempted to help her avoid falling/break her fall. She was a slight woman, perhaps 100 pounds, but I did engage my pec muscles and although she did not fall, I felt it a little in my pecs. The odd part is it seems to have moved my foobs, that were heading for my back, more to the front again!!!!!! In any case, under no circumstances would I have ever let her fall but we all have to watch out for our natural responses to situations. It sure did straighten out my migrating TE's!!!!!
Orchid- You are like a GNC scientist!!!!! I read your posts and even me, who used to body build, does not quite pick up on all references but thank you so much for all the good information. That is wonderful. I am amazed when I read the wonderful information you are passing onto us. It is greatly appreciated
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JBL, I would like to know where exactly did you find the info/chart about the PR+/ER+ HER- as I do have the same diagnosis and I'm very curious to know more about the combo of all this.
Starting to wonder more about this as my next appointment with surgeon and oncologist is on the 19th...
Thanks a lot for sharing! -
hello june ladies,
haven't posted in awhile but have been keeping up with the thread.
my drains we removed on tuesday and had a small fill on tuesday also. things are going well. slowly getting back to being me again. even drove (very short distance) yesterday.
regarding self imagine - it is okay. a lot better then i thought and we are only in the beginning of the reconstruction process. so it will only get better from here. i did have a little breakdown today. i decided breast cancer is just awful. it takes so much from us - but it has taught me one thing - not to take anything for granted and to enjoy everything.
enjoy your weekend!
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Hi Joystars - heres the link to the abstract I was referring to, based on a study of women in CA
http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=52&abstractID=40116
Hope everyone is having a great weekend.
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Well, that is the right link but for some reason it does NOT take you to the article. If you google the title of the abstract it should lead you to this - the title is "Variation among the ER, PR, and HER2 breast cancer subtypes in California"
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Hi Everyone, Hope all is going well for all of you. I'm going to th BS on Tuesday for my 6 week check up. I cannot believe how fast it has gone by. I'm looking forward to getting my RX for my mastectomy bra's and foobs. I have not liked wearing the starter cami. I'm to hot blooded for that thing. I told my DH the other day. I cannot believe I don't miss my boobs. I would never have thought I would have said that. But it's true. I have alot more piece of mind now. I hope all of us have alot more piece of mind. For those of you that did recon. I hope you are all healing nicely. I just want to say that you all have meant alot to me. I don't post much but know that you are all in my thoughts and prayers. Take Care Lucy
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the info in article from link that jblcsw10 provided is out of date. Anything from 2007 is not considered accurate anymore. Stating that ER+, PR+ is one of the "best" types of BC to have is just wrong. There is no "best" type of any type of cancer. Cancer is Cancer for crying out loud!
Knowing what type you have is important so that you and your doctors can come up with a game plan to fight it, whether that be surgery, chemo, rads, hormonal, etc.
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Hi Laurie
Glad to read that you are recovering well, good to get a little time to yourself
No news yet for a date..... I'm thinknig I might have to go down to Edinburgh or Glasgow to have the Op, wouldmean a cgange of BS and PS... Not ideal, however, I don't want to wait until late Aug/Sept. Almost a year would've passed since my screening mammo....
Liz, I've managed to not eat popcorn today - required enormous willpower
someimtes only a treat will do..
Hugs to everyone in recovery... your messages are heartening to me
Robin
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STLCardsfan: your comments duly noted & I deleted the posts that upset you. I apologize, I agree all cancer sucks and we can't compare, my intent wasn't to upset but to be helpful. I apologize to anyone else I might have offended. Jane
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Robin: you are strong beyond belief for avoiding that popcorn! I did, today, actually have broiled salmon and a sweet potato!!!!!!!! I actually ate a real dinner!!!!! No gummi worms....gummi worms were actually dinner about a week ago. Why might you have to change BS & PS and travel to Glasgow etc..? Did I miss something? Also why a year since screening? I hope yout get treated soon.
StCards: I feel like it is all my fault for even getting going with the HER2 question. I am sure what Robin meant was if you have cancer and you have that combination with HER2 being negative, it is easier to treat with ER and PR being positive. A lot of bc patients found out their HER2 status during biopsy and I was biopsied back in early April but having just found it out, I just had questions as to what it really meant.
We all support each other so much, don't let a little misunderstanding come between us. No one means to be hurtful....we all have so much to deal with every day. BC does suck but no matter what kind we have, the fact that we are on this board talking about it is so cathartic and it helps us immensely. We are all having a bit of a tough time of it, overall, as things go so I totally apologize for opening up a can of worms per se. All different combinations of those 3 all mean different things and all have their positives relative to treatment. I am just glad the medical community knows what to do for us.
I hope you all had a good weekend-
Liz
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Lizzymack - Congrats on eating a good healthy meal! I cooked dinner for my family for the 1st time tonight. It actually felt good to contribute something. Now I will go pass out in my recliner.....
Jane
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Jane: Good for you also! It feels good to be getting back to some sense of normalcy...however...
How is everyone coming along on energy? If I have one day of a fair amount of activity, I am nothing short of knocked out the next day. I know it was a huge surgery but I am just wondering how you all are doing because I can definitely put back some naps!!!!!
Let me know if you are all running marathons...or like me, running for your bed!!!!!!!!
Liz
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Well I am not running marathons- but I am gaining on it! Yesterday my husband and I took both kids and went to the grocery store to get a few things. We were in and out in maybe a half hour- I was exhausted, I mean exhausted, by the time we got to the car to come home. It seems like my nerves are waking up on my sides , armpits etc and I am walking with my arms up so they won't rub against my drains, they kill! But today I made my older son grilled cheese as requested, and fed my youngest his cereal at lunch and dinner, cleaned up the kitchen, washed bottles, put away toys....and I gave my older son a bath tonight all by myself! So little victories. My poor husband is exhausted from playing Mr Mom
My drains have magically dried up, I have put out less than 10ml per drain in a 24 hour period for 2 days now. Which means I am calling the PS first thing in the morning and having them pulled out! Yeah!!
Jane- no worries
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I almost forgot- I have gotten to the point in the past few days where I am taking the celebrex with extra strength Tylenol during the day and the percocet at night. I am hoping to start driving again this week
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Good for you Laurie, you will feel better once you get behind the wheel - a sense of freedom! Even if you have to start out with small trips, it's better than feeling you're confined to the house. Baby steps!
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Laurie-that is what I mean...if I do some things I am knocked out! Oh well...at least we are all getting better
I have been driving for about 10 days now and Tues is 3 weeks for me. My drains dried up also but my PS is on vaca so I can't have them removed until the 20th! Well, at least they are lighter. I hated when they were all filled up as they are heavy and look like little pink grapefruit grenades!
Liz -
Liz- There is no one else who can pull those drains for you? Nurse, BS etc? Tomorrow will be 12 days for me having the drains and I don't think I could wait one extra day to get these things out of me, never mind the 20th!
Yes, doing things definitely wipes me out but I seem to recharge over night and after nap time
My son loves our naps together. After lunch he looks at me and says ready Mommy? Lets go! and heads to my room. I usually tell my husband I will just lay with him and snuggle for a few minutes....the next thing I know it is two hours later ♥
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Lucy: I agree. You all have meant a lot to me too. Thanks for sharing this important thought. I have learned so much here.
I really have been wiped out and the more I do, the more IN PAIN I feel....hopefully I will feel tired here soon after 2 vicodin's, 1 effexor, and 1 advil pm! My new "girls" are BIG and I wonder if that is why I am in more pain? Plus the surgery that I had...who knows, and who cares....dammit I am going to continue these meds as long as I need them!
)))
Liz, sorry you have to wait to get them pulled. Surely there is someone in the hospital or office that can cover for him? It is a source of potential infection . Bummer. Maybe you can call and ask? Ours are pulled when less than 30cc in a 24hr period, but no longer than 3 weeks. When I called, they let me come in that day so I am hoping that you don't wait because it is a real difference having them out and being able to turn in bed.
Here is to a comfortable day for all
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I'm not much for writing but I've been reading along and there's no way to place a value on the reassurance I get from all of you!! It's terrible I guess, but it's nice to know I'm not alone and that what I'm experiencing (pain etc.) is normal.
UMX with immediate implant was on 6/29 and I thought I'd be off the heavy pain meds by now. Silly me!! Drain came out on Friday 7/8 (yeah!), and I've been trying to wean myself from Vicodin primarily because I hate the way it makes me sluggish and my head fuzzy. PS and I agreed I'd try Aleve and just use Vicodin at night, so I've been doing that for last couple of days but have to take so many Aleve (2 every 4-5 hours) now I'm nauseous much of the time. PS said we can try Darviset (sp?) if Aleve didn't do the trick so I plan to call him tomorrow to give that a try.
Is anyone else using Darviset? Also, has anyone tried applying heat to the area? I have and it seems to help a bit. I'd love any other suggestions for managing the pain. When does it end? I'm tired of being in pain - although it's not severe, it's constant and irritating and - uh - painful
. (And when I complain I feel like such a witch for not just being grateful the cancer is gone!)
On another note, BS and I discussed and I opted not to take Tamoxifen. Side effects seem too risky to me since it only reduces the risk of cancer in the other breast and I/they will be monitoring that much more closely now anyway. Although I had multi-centric cancer in UMX breast, BS was comfortable with my logic since nodes, nipple biopsies etc. came back clean. I realize not the right decision for everybody but just thought I'd share my thought process.
Went to the museum with my kids and nieces and nephew today. Whew! Okay, so probably bit off a lot more than I can chew but sometimes, when I feel almost normal (when the pain meds are working) I forget I'm still recovering. Spent the last several hours passed out in bed! Won't try anything like that again any time soon!
Liz - hope you can get your drains pulled sooner. A nurse pulled mine. It's quick and has made a huge difference for my comfort! (Just think, showers with no extra appendages!) Plus, like MRDRN mentioned, my PS was pretty clear that it's a possible source of infection if they stay in too long (his standard was less than 30 ccs for at least 48 hours and trending down).
As I said, I don't write often, but I'm always reading. Your posts have made a ton of difference for me and I can't thank you all enough! Hope everyone has a good night!
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Just re-read my post and realized how long it was! Maybe I should write more often so I don't send a novel. Sorry!!
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I had a right mastecomy on June 7,hard to believe they actually send you home the same day after this procedure, well i ended up staying for 2 nights, had a hard time in recovery, they couldnt get my pain managed and then my breathing, i was in recovery for 5 hours after surgery and then threw up for 3 hours in my room that night. i got my drain out after 3 weeks, i have been in the emergency 5 times since my surgery, they finally realized after the 3rd time i had an infection in my incision, the surgeon pushed out a blood clot. I am on antibiotics and i have had a nurse come everday for the last week to pack my wound with sterile gauze.
i went to see my surgeon for my results and found out there is cancer in 1 out of 4 of my nodes they took out, i am booked for an axillary dissection to take out more nodes next week, that is if my infection is cleared up, then i was told i will be going for liver and bone scans and chemo,
i am so scared i just want this all gone, i am having a hard time staying strong for my family I h, especially for my 11 year old twins, i am a single mom ( i have 3 grown children with 3 grandchildren) with 2 children at home with me, the financial situation is getting to me,, i just wish i would wake up from this nightmare,
i am trying to stay strong but am getting weeker by the day,
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