Starting Chemo September 2015; join us!
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tkemp--I spoke with one of the cancer center's social workers a few months ago, and she told me then that for most women, the roughest time is the end of treatment. You feel a little abandoned and left to float out there, wondering if it's coming back... and also trying to piece together a new normal for your life. She said it's really tough. Friends who were worried or helpful move on with their lives and everyone, including spouses, think, "Well, THAT'S over, so back to business". And it's not.
I just had my final chemo Tuesday, and rather than being as excited as I expected, I'm finding myself worrying and rethinking the choices I'm making. I'm suddenly seeing articles and studies indicating that mastectomy may have a lower survival rate for triple negative women like me (even though I've read it before and dismissed it for various reasons) and doubting my choice. I think it's the feeling you have if you're afraid of heights and you see that teenager coming toward you to lock you in to the rollercoaster. It's about to happen and there's no turning back.
I just posted in the hair thread that some a**hat in WalMart told his companion, "I hate when women wear men's hairstyles" in clear earshot of my sister, whose hair is growing in after chemo/rads for colon cancer. She just smiled right at him and said, "I love that I don't care WHAT you think." I would have taken him to town and told him why her hair was like that, just to watch him try to melt into the floor from shame. I'm really having a tough time coming down from the steroids. LOL
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All - BIG compliment - I tried participating in another forum today (won't say which one). Got immediate and negative feedback that made me feel like... well, like compost. Needless to say, not goin' there again.
You guys always lift me up. Thank you.
PS Carolina Amy: Good thing I wasn't in WalMart with you. Cause I would clocked him.
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Lisa - you know we love you here and value what you have to say! You make me laugh
Southern - my hair looks like yours but you have more eyebrows, I think I have 3 hairs left on each one LOL!!
tkemp67 - ditto what everyone else has said, I wanted to feel so accomplished but I felt lost, I've been told by a few women here that it's very common to feel that way. {hug} Congrats to you and CarolinaAmy on being done - it is a big deal!
tessu - I'm glad you are in a good place, whatever decision I've made I haven;t looked back, it's not easy but it's worked for me
exercise - I have some of those white straggly hairs too!! But I have enough fuzz grown in that I don't want to cut anything just yet. I had one friend tell me she saw a newborn baby with hair just like mine, we had a good laugh.
Skittlegirl - hope you're doing well after your surgery, that first week or so afterwards was not so fun
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I had my lumpectomy and additional node removal on Feb 8th. I finally got the nerve today to call for the pathology results. Everything was negative! Big relief. The only bummer is that it sounds like the surgeon took out 21 nodes. This was all verbal so I'm hoping that was wrong. The plan was only to take a few more.
Ten days post opp I'm finally starting to feel a little better although I still have limited arm mobility without pain. Planning for rads next. There is a small light shining at the end of the tunnel.
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That's really great news about nodes negative Twiggy. I had 22 nodes removed in September and mobility very limited at first I sort of panicked. I did the exercises the physio showed me every day and it worked a treat. I did get cording but that resolved itself.
Im nearly done with rads. Only 11 more to go. Started to feel a little tired and my skin is a little pink. Yes you are right I can see light at the end of tunnel.
Take good care of yourself.xxx
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Twiggy - Yeah for the great path results!! I am loving hearing from each of you as you either complete your journey or take another big step forward.
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Cinque. My armpit is very numb and the skin on my upper arm is extremely sensitive so it hurts to touch it. Did you have anything like that? I'm glad your mobility improved. I'm going to ask about physical therapy.
Lisa, if I remember right you have surgery coming up soon. The lx part had been very easy it is the node part is an oucher. I think mine might be worse because they went back in the same sight as my snb but I ended up with a much larger incision. My b.s. mentioned they like to remove the old scar so I'm thinking he had to make a bigger cut so he could do that.
Good luck to anyone with upcoming surgery and rads. We can do this!
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Twiggy,
I'm 3 weeks post surgery. I had 21 nodes out on the left side too. On that side, mobility hasn't been too much of a problem, but my armpit is totally numb and the skin on my upper arm is super sensitive. Sometimes even tingly or itchy feeling. Often throbbing.
I was going to call the lymphedema specialist at the hospital today to see if it's normal or if I should go in....
Just wanted you to know that at least it's not unusual.
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Thanks edwsmom. The sensitive/raw feeling is really annoying. I'm going to ask about le at my next appointment.
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Twiggy and edwsmom I'm 15 days post surgery and I have the same numb armpit and upper arm on the right side where she took 12 nodes. Both my breast surgeon and plastic surgeon said it's normal since they operate so close to the nerve. My breast surgeon said I will probably feel tingling or other sensations there like ants crawling while the nerve heals. The last 2 days I have felt a lot of twinges and tingles and this morning I seem to have more feeling back on my arm. They both said it could be months before I get feeling back although sometimes it doesn't come back. Another wait and see side effect. Just know you are not alone!
Twiggy excellent news on the pathology report!
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Yay, Twiggy! I still have some arm/pit numbness from my ANLD in August. It has improved, but hasn't completely resolved.
Cinque: I also have 11 more rads to go, and am with you on the pink and tired. It is so strange to be two weeks from the end of active treatment. I still have Tamoxifin and reconstruction to look forward to, but am about to find my new normal. Whatever that is.
Mom2boo and tkemp67: I hear you. When I finished chemo, I wasn't joyful and I didn't feel accomplished. I was just overwhelmingly relieved
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I'm 6.5 mo post sx and I'm still very numb in many areas, so it is normal even this far out.
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I am over a year from my mastectomy... a little less than a year from reconstruction... have no very much feeling in that entire area except tightness.
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Twiggy - Thanks for the encouragement, I appreciate it! I had lymph nodes removed for biopsy 18 years ago, so I hope they can take this one from the other side. : /
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MNLisa, are you having a sentinel node biopsy?
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Twiggy - Yes, sentinel node biopsy + lumpectomy Tuesday.
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Numbness and funny sensations go hand in hand with node removal it does get better but it takes a very long time.
Please find out about exercises the rad nurses even told me to keep doing them through rads.
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Cinque, I'll be sure to ask about exercises at my follow up appointment next week.
MNLisa, in case you don't know, for the snb they will inject radioactive stuff and/or dye in your breast near your tumor. It will drain to the sentinel node and that is the one(s) they will remove.
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hiya mamas.
Twiggy, two thumbs up!
melodie, congrats on being done. I am super sketched out by radiation, even though I'm doing the max, so I get it.
I am 4.5 weeks PFC. No regrowth. 8 rads in. But feeling better, though tonight out of the blue my mouth sores reappeared! I am pounding Kefir trying to replace the good bacteria that 6 rounds of antibiotics in 6 months has taken.
I am wondering if my hair will grow back too. Surprisingly, I feel sort of ambivalent about it.
Still craving sugar like crazy. I think I ate my weight in cashews and almonds tonight to avoid the teddy grahams in the pantry.
Saying a prayer for all you lovelies tonight!
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Twiggy - I did not know that and appreciate the heads-up on how they find the SN. Thank you!
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my son hit his head hard on my port last night. I am reevaluating my decision to keep it another year. I want it out!!!!!
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I am impressed that my son hasn't managed to flip my port over. He also thinks my gasps of anticipatory pain when he's flailing around my mastectomy area are hiccups. "Momma you have hiccups?"
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I know you gals have younger kids but mine are 8 &11 and I have to be so careful when they are around with my port. My daughter was pulling a binder out of her backpack and her arm jerked back. It didn't hurt when she hit my chest but it was 1 inch from my port. My son isn't the calmest boy and when he hugs me I have to really make sure that it is in the other side. I can't put a backpack on with it in and I even bump it sometimes inadvertently.
I hate my port more than anything I have experienced because the scar and the port both show with most of my shirts. The scar from when they messed up installing it is so obvious. My PS will remove it as is going to try to minimize the scar when I get it out. Unfortunately I have no idea when that will every be. Atleast until August maybe January. It will be when I am sure I can have an IV and also when I am sure I don't need any other. surgeries.
Eventually I may have to put a tattoo over that area and I am not a tatoo girl.
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Cajun, Skittle and Exercise - Haven't mentioned lately how much I admire our warriors who have children. There aren't words enough for me to express how you impress and inspire me. Rock on.
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Awe, thanks Lisa!!
Mamas, the port fear is real! Can you imagine this nightmare malfunctioning? I would be peeved! My son is fascinated with it. He says "port, port!!!" (19 mos)
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Lisa, I second your admiration for the women here who are caring for young children. I can barely manage my 2 small dogs! I'm sure being 20-plus years younger helps, but still ...
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Lisa, I THIRD you admiration for women with small children --- and women with medium-sized, still at home children. My sons are out in the world; taking care of my home with just my elderly dog and my husband has many times been almost beyond me.
All you wonderful women here rock!
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mLisa good luck with surgery Tuesday. Twiggy congrats on negative nodes.
Thanks for all the compliments on my hair regrowth. I think it's staring to look sort of pixie like. Now I need to dye it after rads end this week. I called my mo Friday and got the ok to use gentle hair dye and got medical clearance to go to the dentist.
As for rads I have 3 boosts left, but my skin opened up under my breast. Yuk. It hurts like a bitch. My ro gave me silvadine cream to use to help healing. I swear my poor boob is literally on fire. Ouch. I am doing saline soaks to help and have upgraded to icky sticky aquafor cream.
Amy I love the pic of you at last treatment. Says it all. I have one of me giving the thumbs up to my last taxol bag. I wouldn't let any studies make you second guess your surgery decision. You gotta go with your gut. And it is scary knowing that there is no more treatment after we finish as triple neg. I am facing that this week. I am thrilled to be done but am freaked out that I am done. I still can't believe my cancer journey started last April at my mammogram and has been that long. I worry was my treatment enough. I am doing everything I can to reduce my risk by eating healthy, exercising, and losing weight. It's weird I am the same person I was before treatment and I am not. I think, feel, and look different. I have lost about 23 lbs and have actually gone down almost 2 sizes. And I swear my boobs shrank. I actually bought smaller size clothes and it looks like I need to go down a bra size. That is when I can wear one when I heal from rads. Did I say ouch?
On the plus side I have a work trip in 3 weeks to Florida and get to enjoy warm sun and get away from the northeast winter. But no direct sun or pool as I will be 3weeks post rads :
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Shopgal, I went in public yesterday with nothing on my head for the first time. Twice. Once at a memorial service, and again at a roller derby match. At the memorial service, I knew lots of people and everyone petted my head. At roller derby, no gave me a second glance (as expected). I'm 7.5 weeks PFC, and am just about sporting a GI Jane. I realized yesterday that I look less cancery with my salt-and-pepper stubble than I do in a hat or scarf.
Cajun, you're right at the point where my hair took off. Once the follicles turn on, the hair comes in fast!
Exercise, getting my port out was huge for me. I could always feel mine. I didn't hurt, but I could always tell it was there. And mine really stuck out, plus you could see the tube under my skin crossing my clavicle to my jugular. I wasn't supposed to carry heavy shoulder straps on the cancer side (I developed lymphadema), and the port made it hard to put a strap on the non-cancer shoulder. I actively resented the port. I was very glad to have had one, and mine worked like a champ. My surgeon cut away the scar tissue when she removed the port. I think this new scar will eventually be minimal.
And had I thought of it, a thumb is not the finger I would have given the last bag of Taxol.
Minnesota, best wishes for your surgery Tuesday. It will be done before you know it!
I'm also a big admirer of those of you with small children. At 12 & 15, mine are pretty self-sufficient and have been a huge help to me. Small children NEED so much, and require so much energy, that I honestly don't know how y'all did (and continue to do ) it.
Yay, Twiggy! Negative nodes are awesome!
I have two more weeks of rads. Five whole-shebang treatments and five boosts. The RO and techs say that my skin is holding up well. The whole area is pink to red, and my armpit is getting really red. No blisters orbreaks in the skin. Fatigue is starting to set in, though. It's not nearly as bad as the chemo fatigue yet. I'm mostly just tired, with only a couple of hours of "cannot get off the couch" fatigue.
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Hi everyone,
I'm so glad to see everyone progressing so well!
I first had neoadjuvent chemo (TCHP) and now I'm about 3.5 weeks post surgery (BMX with reconstruction and ALND). Two down, one more major treatment to go.
I'm just starting to feel like I can function, but only in fits and starts. I really, really want to resume my regular life, but am learning the hard way that I'm not strong enough yet. I still get very tired easily. It's a pretty big exertion just to shower and get dressed. I did that today and then got some lunch and went to Target with my family (needed to get out of the house) and then I was toast. Came home and passed out for 1.5 hours of sleep. Now I feel better and could get some laundry done and prep a bit for the work week.
I go for my rads simulation next Friday. Initially my PS said I would start rads 6 weeks after surgery, but I have one small spot he wants to see healed better before I start. So I get a couple extra weeks before I have to pull the cord on radiation. I'm grateful truly. We are all really run through the gauntlet having one big process after another. I'm one of those who has a full-time job and a 3-year old boy. My parents were here for 3 weeks helping my family post surgery. It's hard having family stay for so long, but we really needed the help - especially with our toddler who is smack in the middle of the terrible 3's. I want to just get through all this, but Im grateful for a little break.
(I'm secretly very envious because my son really gravitates toward my husband because I've been unable to do active play with him and see to his needs. I'm hoping that things will get better when I'm back on my feet and getting back into the rhythm of life)
My birthday is the first week of March so I told my husband I really want a weekend away just the two of us. Just a break from regular life. His parents are thrilled to get some time with our son and I just want to go somewhere warmer, sleep in, read a book, feel a little sun on my face and take a break before I start the overwhelming process of radiation and continuing Herceptin (while I'll be going back to work too). I figured I should take advantage of this little break (extra time post surgery and before rads) to have a little weekend.
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