Calling all TNs
Comments
-
Michelle:
We must have posted at the same time before, I missed your post earlier.I'm so sorry for your bad news. I think others have good advice at this point. It's very early in the game. However, I can't help but share your feelings to some degree, DH and I have talked about traveling and taking the kids to Disney and all that fun stuff. And yes, over the holiday break we did visit our lawyer and get everything squared away. It was the most depressing thing I've ever done.
Even though my surgery was a day earlier than yours, I am still waiting for my results. The BS was on vacation all this week, so they didn't schedule my follow ups until Jan 4th. I find out then whether or not my sentinel nodes remain negative and whether or not they got clear margins. I also find out about when to start chemo. I suppose I need a port. That whole process creeps me out.
To the other ladies who have had lumpectomy:
Why does my boob hurt so bad, 11 days after surgery? Like--it's so painful, almost like having mastitis (for those of you who breastfed your children). My nipple is ON FIRE, and I can't even tolerate clothing. My boob is swollen (Huge) and this is the one where they *removed* tissue...shouldn't it be smaller by now? Ouch. Was hoping some comments on this--anyone with experience...I will (of course) ask at my follow up, but it's not till Tues.
Have a great new year everyone!
0 -
I agree with you girls. My mom is the one who urge me to be part of a forum like this to exchange with women and even more mothers who are in the same situation as me. Even if our families are very understanding, I feel that NOONE understand more how we feel inside then someone who is living with tnbc. So I finally listen to her and I'm very happy I did. And I realize that even if some stories scare me and face me with my own fears and mortality, it does in the end make me stronger and make me want to face this cancer with all I've got! And when I hear that someone passed away like Carin Rose, even if it makes me sad, I get confort in the fact that she died peacefully surrounded by the ones she loved, and loved her. If ever I go, I would want it that way too. So thank you all for being there with your stories and comforting thoughts. We need this!
Stay strong.
0 -
slcst12: I would strongly urge you to call your BS after hours number and tell them what's going on. It may be nothing, but it could be infection and you definitely don't want to wait until Tuesday to address this. Besides, it will give you peace of mind if you have it looked at and they feel it's ok. Swelling, redness, burning... can be definite symptoms of infection.0
-
Lovelyface:
I too would do the same retesting. I think it's a smart move since you showed some, allbeit a small amount, of progesterone positivity. I had mine retested when my lumpectomy path report came back as "triple negative as stated from original biopsy report". My BS said no reason to recheck - they will just go by the original biopsy (which is only a tiny shred of the tumor). My onc had a fit and demanded it be rechecked. Of course, it still did come back as triple neg, but at least I have no doubt.
good luck and keep us posted.
0 -
here's to a happy, HEALTHY new year to all of us!!!! pls stay safe tonight. xxoo
0 -
slcst12 - please don't delay calling your BS or anyone who is on call and tell them about your pain. I had a very bad experience, there was an infection building in mine after surgery. I had a huge infection due to the delay in getting proper care, and now have a sort of indentation. It has filled up quite a bit now (5 months later) and I am not that disappointed, but if not for the infection, it would have remained normal. I experienced a lot of pain after surgery and during chemo on both. If you feel they are getting really red and swollen with pain, please get to a hospital, as you don't want to deal with an infection.
0 -
stlst: Get yourself to a dr immediately!!! Better safe then further complications. Gentle hugs.
These boards have helped me so much, I can't even begin to say. When I was first diagnosed I thought it was a death sentence. These boards bring me so much comfort and support and it gives me a safe place to speak with others in the same situation. Without all of you I could have been in a much worse place then I am. It also takes the burden off of my DH and friends and leaves me free to discuss other things.
mommafluff: Congratulations on maing it through your first chemo. I hope your SE's are few and far between. Hugs.
Happy New Year Everyone!!!
0 -
Mommafluff61,I found that promathazine did practically nothing except put me to sleep, but Zofran worked much better for the nausea and didn't knock me out.
I did not use any cold agents (peas or gloves) on my fingers or toes and my fingernails all did fine. My big toe nails look damaged, but they stayed on as did the rest of the toenails.
So sad, and frightening, about Caryn Rose.
I finished radiation yesterday. All done now with treatment (hooray!) but facing that scary place others have described. I tell people that this year I've learned to walk on air. By that I mean going forward each day without looking down or back.
0 -
sclst - I agree with the others, if you haven't called the dr, please call or go in ASAP and let us know how you're doing.
Michelle - ditto to what the others have said. I know this is overwhelming and a lot of advice is sometimes easier said than done, but like Heidi said - take it one day at a time and try not to look too far in the future. (((hugs)))
Melissa - The day to day worries are there, it happens, but take it day to day. I am prepared, but I really try not to worry about what I can't control. Again, easier said than done, but if you can tell yourself to slow down, breathe and take it slow it helps. (((hugs))) we all need them. And.....it's okay to ramble - I do it all the time, that's what we're here for.
My onc used to tell me to stay off of the internet, but I think he worries about me becoming "addicted" to the internet doom and gloom sites. I also think he worries about some of the crazy information found online. I don't know how I would have gotten through chemo, bad days, nights and my crazy mood swings without all of you. My family also tells me that I shouldn't be here, but I think they just don't understand our need to connect with one another.
Sugar - I really, really enjoyed meeting you and thank you so very much for my Canadian gifts. I LOVE them.
Today is my oldest daughter's birthday, so I need to wrap things up to go cook the meal she requested (Salmon w/spinach and a side of roasted asparagus) so it'll be ready when she gets here. I still can't believe I have a 27 year old daughter.
Hope everyone has a Happy and safe New Year.
0 -
sicst12, Do you have a drain? Is it still draining? That does not seem like a normal reaction to a lumpectomy! I hope by now you have gotten someone to look at your breast. I had a lumpectomy and of course everyone is different, but I did not have those symptoms.0
-
Happy New Year!0
-
Right back atcha' Heidi !
To all: A HAPPY AND HEALTHY NEW YEAR!
0 -
HAPPY NEW YEAR everybody.... 0
-
xxoo
0 -
Finally back online after being off a week. Lots of catching up! Yes, I'm in for the 10 lbs starting Monday. You're gonna hate me, but after chemo, I can't remember what chocolate tastes like, so I have little desire for it. And I loved chocolate!! I still eat kisses out of habit but when they're gone, that's it. Sugar is my downfall.
I've been finished w/treatment since October 15th and had my first tumor marker blood test Thursday (results on Monday)...so when does my 3 year countdown begin?
I can't get used to this stranger looking back at me in the mirror! I also went thru most of this without close friends or family and I still feel frightened and anxious. The diagnosis, hospitalizations, SE's, TE's, moving, reconstruction and recent back surgery have really traumatized me, as well as the fact that I couldn't even finish chemo. So I set up an appt. w/ a psychologist for Wednesday. Just saying this in case anyone else is still on edge and can't move on. I don't have a DH or DD or a BFF (nearby) or even a dog (he would have to learn to feed and walk himself, lol and unfortunately allergic to all cats). I have to start working again, and if I'm going to interview successfully, I have got to get in a better mental place. If I get any golden nuggets, I'll pass them along.
HAPPY HEALTHY NEW YEAR TO ALL!!
0 -
Happy New Year everyone!! May we all be blessed with health this year.
I am on day three of final chemo (TC), Tummy is a little yucky and some minor aches and pains-my worst days are 4 7. I should be so happy I'm done, but there's the cloud of my genetic test results hanging over me. I have at least 2 more weeks for results. That one little test will determine so much-more surgery, I am so worried for my kids futures. I really don't like being so negative, but some days it's impossible.
OK, I'm done whining ....for now!
0 -
Ruth, I have been seeing a psychologist for a while now, and she is the best! It is a great idea for you. Without someone to bounce things off we end up doubting everything. You will be happy with a good psych. Don't be too hard on yourself either, just reading what you have been through makes me tired so slow down, take a deep breath and when you feel like it, push forward. The results of accomplishing even little things are really good for you.
0 -
TifJ: Congrats on being done with chemo!! I'm BRCA2+ and had the test done prior to mx. Yes, that one little test can mean a difference for the future of your kids as well as surgery. I had bilat mx and will have ooph in Feb. I have 2 daughters, one turned out negative, one positive. It's not fun, but at the same time, we gotta realize that these tests weren't available to generations before us. So if someone got breast cancer, they stood a lesser chance for complete recovery. So she's positive... it means she needs to decide if she wants children and she needs to keep a closer eye on things. We gotta remember the genetic thing doesn't mean we will definitely get bc... it means we have a much greater chance and we have to make decisions on how much preventive stuff we want to do. It's like a lot of things in life. You find out you have a small heart problem, or high cholesterol, or diabetes, or you know something runs in your family like heart disease. You just have to take the necessary steps to ensure you've done what you can given that you now know there's the chance for a problem. Sometimes knowing you have a problem is worse than the sweet bliss of not knowing, but honestly it gives all of us a better chance to combat anything that might happen before it does. Try to relax and breathe... the shock of finding out the results isn't pleasant, but you will be able to relax after the initial shock. Life still goes on... and goes on very nicely.0
-
Thanks to all of you generous, wonderful, understanding sisters!!!!
I may be fairly new here, but you girls are key to my getting through this. I totally understand what everyone has said about needing this online family - and my DH too started out by saying too much 'net was not good. He has changed his tune however, and has started to encourage me to come here to talk to all of you. He has seen - by the stuff I now know and the questions I ask at doc appts - that this forum is INVALUABLE to self-education and support.
I am still in a somewhat dark place but have made a good couple of days. Sometimes I even surprise myself at how I can switch moods for my kids' sakes. We went out to dinner on Thursday night with the girls and had a fun time watching them discover Vietnamese food, which they loved.
Last night, for NYE we took them to see Gulliver's Travels and out for burgers (I had fish - trying to do whatever I can) - and they stayed up to ring in the new year by watching the ball drop in NYC. We then all watched the old film "Some Like It Hot" and went to bed at 3am. It was great and I even forgot my troubles for some parts of it.
I woke up this morning though with both my babies in bed with me (DH went down to make coffee). They were asleep and I lay for a long while watching my two little girls sleep, like they did when they were newborns, in my bed. I cried quietly when I wondered if I will ever see them grown up - and imaged what they will look like as women.
I'm finding I have to cry for a little while each day - secretly - in order to put that mask on and get through.
And I need to come here, even if its just to read others' stories of strength and encouragement. I think of you all, wonder how you are, worry for you (slct - I hope you're ok) and wish us all a much better 2011.
0 -
Michelle- You sound so much like me when I was 1st dx-ed. I used to watch my kids sleep and cry and cry... It really does get better. Of course I still have those dark, icky thoughts... especially around my cancer-versary and when I hear about bad stuff happening to a BC-sister (even more-so when she is TNBC)... BUT (big HUGE "but"), there are so many days now where the thoughts of BC are just a shadow lurking in the background... AND (big HUGE "and"), I have learned to really treasure every moment with my kids. I hate to admit that *anything* good has come out of this--- but it has.
Love adn hugs to everyone!
BTW~ I also had DCIS and am still here!
0 -
Angelisa- Thank you. I wish this test had been mentioned before I had my MX. I think your right that I will feel a great deal of relief knowing the results one way or the other. I can deal with additional surgeries and my DD has many years before she even will understand all this (she's 5). I just want (like we all want) to live my life without being so fearful of the future. I know it will get better, I'm just having a rough day-it doesn't help when you feel crappy! Where are you currently on this journey?0
-
Michelle: I went through a period after I was diagnosed wher I just cried and cried and cried. I am so glad you had a great New Years and that you have your beautiful family around you to help you get through this and I am also glad that you came here to find your second family! It's scary but we are here for you. Hugs.
(((TNBCRuth))): I cannot imagine going through this all alone! One thing that cancer taught me is that it is okay to reach out to others. Not everyone but people I barley knew came forward to help me through this time! A couple friends of friends became more important to me then the people I met them through! Reach out either through a local support group or with a one on one counselor to get you through. I have been having a rough go of it and now that the dust has settled I am considering getting some support, too. Even though I have my DH and close friends only others who have been through it, like the women here on TNBC can really understand what we go through. Hugs.
0 -
What is it about watching our kids sleep? I still do that even though mine are teens. I have never cried as much in my entire life as I have in the past year. But I am feeling better as time goes by.
tnbcRuth: I am sorry you had to go through this alone, but now you have all of us. I've said before we are the only ones that understand what it's like to be TN.
Happy New Year to everyone, and to those of you going through chemo, I hope you finish quickly and with few side effects.
0 -
Hey Ruth...about that countdown..some count from date of surgery and some count from date of end of treatment..I count mine from date of surgery...
Happy New Year Everyone! Watching football all day today...
Making a pork loin and sauerkraut.I'm thinking that this a regional thing....
0 -
Michelle67: I do that often too... cry quietly and then put on the mask of happiness. Family and friends mean well, they do, but they don't understand and I've found the mask becomes reality most of the time now. But yeah, I cry too... perfectly normal. I've also wondered the same thing about my son who's 3, but I gotta also say that I had to really change the way I was thinking after dx. I found it far too easy to get into a pit of depression and there is a life out there for me, even and especially since I had this dx. Before dx, I worried about other things... old age... wrinkles... osteoporosis... dementia... heart problems... arthritis, you name it. Now, well yeah those things are still there, but I now know that the only way to see if I'm going to have those problems is to GET there with becoming older. And I felt like I had to pull myself up from the fear of this dx, because it was getting the better of me... so I fought and most of the time now I'm planning for the future, just as I did before dx... because until it's my time, it's NOT my time, and I ain't gonna rush it. I have mood swings still and that's normal, but BC has and is taking a great part of my life away with surgeries and treatment so I'm gonna try my best not to let it take any more than it is already.0
-
Titan:
I make it too! My grandmother always made it - she put caraway seeds in the sauerkraut. She also used pork spare ribs sometimes too and they'd just fall off the bone after simmering for what seemed like half a day in the saurerkraut. Ummmmm, can you send me some????? Fedex?????? Lol!
Linda
0 -
TifJ: I was dx in September, found out I was triple neg shortly after, found out I was BRCA2+ late Sept. Seemed like every call was more bad news and it just plain sucked. I decided to have bilat mx in October, and was pleased that my BS agreed to nipple sparing. Then I faced the decision about ooph since I was BRCA+. I had second opinions along the way, especially prior to chemo, because my tumor was of an undetermined size, being taken out at stereotactic biopsy. More appts... more decisions... more stress. Onc recommended 4 rounds of TC, and then my second opinion onc informed me my tumor was 3 mm in size, so more decisions. But I opted for chemo because of my age and child, and because I couldn't face the possibility of recurrence without knowing I'd done everything possible. During this time, we found out my daughter's status with BRCA... my son is too young to be tested... they don't recommend testing until upper teens. I also found out my half sister, who had had BC 5 years ago, tested negative for BRCA... but she still had BC. My chemo started the week after Thanksgiving... a Monday... ironically the same exact time my half sister's had started 5 yrs ago. First round went well, no adverse reactions, side effects were minimal.. until... the 8th day out when I developed neutropenic fever and was hospitalized for 3 days. I was given Neupogen, which I apparently had a type of allergic reaction to, making my stay longer than anticipated because it gave me tachycardia (pulse 157). My second round was better.. still had a slight fever.. but no hospital.. got Neulasta this last time. So I'm 50% done with chemo. My last round will be Jan 31st. My ooph and exchange for implants will be Feb 28th. And then hopefully I'll get my hair back (I had 28" of hair) and have a great rest of my life! That's my plan anyway... hopefully the Big Guy upstairs will agree.
0 -
I was dx on Feb. 11, 2010, found out on Feb. 12th that I had IDC TNBC. I received 6 neoadjavent chemo treatments ot TAC followed by a lumpectomy (this had to be one of the hardest decisions that I had to make through all of this) and then 33 rads. The tumor was 2.9cm in size. The onc stated that he wanted to do the chemo before surgery to make sure that the tumor would respond to the chemo meds. I was hospitalized twice during chemo. Two days following chemo I had a breast MRI with contrast, three days later my arm started to hurt extremely bad, (the one that they had placed the contrast through) I wasn't able to function very well, went in the next day to the onc office recieved fluids, started to feel better and then later that day began to get worse, next day was placed on oral antibiotics and IV antibiotics in the onc office and then the following day was sent to the hospital where i spent 10days of IV fluids and antibiotics, once released i continued on antibiotics (two types) for 7 more days. Following my second treatment I again was sent to the hospital 7 days later, i was tachycardic, and my white count was non-existant it was at 0.04 plus i had developed pneumonia. I spent another 7 days in the hospital on three types of antibiotics and when released I was again put on two types of oral antibiotics. The rest of the treatments remained pretty much uneventful, but then again my onc did reduce two of the meds by 25% and left the one at 100%. I always had IV fluids 3-5 days following my chemo treatments, it always seemed like no matter how much I drank I could not stay hydrated enough, so I recieved standing orders that I could just call in and get fluids.
I still find that I worry about a recurrance and am looking forward with apprehension to the first mammogram since all of this started in Feb.
0 -
Ok...kids that are going through chemo and just done...this is from an "old bird"..ok..I was done with chemo in August 09...
Seriously, it does get better....I'm surprised how 'normal" things are now..I'm the only one that thinks about it anymore...I work, I have hair, I exercise, take vitamins, hang out with the DH and friends and my kids...for about a year it was really all about "me"..now it is not...takes a little getting used to actually... but I am getting used to it.
And about mets..well..yeah..there is that...but I really can't dwell on that..I go to the onc. every 3 months...I tell them how I feel physically..actually I can hardly wait to get out of that office..I hate it there...
It seems like it is all the past..and really..it is...at least for now.
oh and Linda...I have plenty of pork left over and it was awesome! Fork tender.. my mom always told me that we had to eat sauerkraut on New Years Day to be sure we have $$ for the year..I sure need it..my daughter is getting married in October...weddings are expensive..but she looks beautiful in her wedding dress and I want everything to be absolutely perfect for her.
0 -
Michelle67
I pm'd you, and then saw your more recent post. I also watch my boys sleeping (3.5 and 19mos) and I cry quietly when nobody's looking. I'm in quite a dark place sometimes. Other times, I muddle through.
Angelisa:
I used to worry tons about wrinkles and old age. I know, crazy right?Kittycat:
I didn't get a drain put in, just a lumpectomy and SNB, so I wonder if it's just taking time to 'reabsorb' the fluid?All:
Thanks for your input about my sore and swollen boob. It feels some better today (though the nipple still feels like it's on fire). I delayed calling, partly b/c I don't want any more bad news (I know, dumb, right?) and partly b/c it really had started to feel somewhat better...
Anyway, I have my follow ups on Tues, where i can find out how many nodes they took, and whether or not i have clear margins. I'm anxious for that, but am scared all at the same time.A very Happy and Healthy New Year to everyone. Thanks for being there!
0
