Calling all TNs
Comments
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Thank you so much
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Just read through the posts, been a busy few weeks.
Naan-I admire your strength and honesty! Oh how I can relate to the "roid rage", I went though it many times and there is not a hunger like when on steroids! Glad you are feeling better and have been able to have a burger! Just let me know and I will send one your way at a moments notice:)
Beach-Do we all have crazy neighbors? I feel for you, you certainly did not need that at all. How can people be so stupid. Thank goodness she at least realized her stupidity, but I still would never want to talk to her again.
Christine-I am so sorry to hear about the news you received. I thnk of you and your family often and hope you get much more time to spend together.
Stupidboob-You help more than you think! Just knowing that someone else out there gets it is so comforting! Although I am saddened that you get it because I know how frustrating it all is. We will speak soon.
Hi Karen!
Hi CS and Titan! Hi Inspired, Julz, zuzee! Congrats zuzee!
Hi Tif and Mags!
So happy to hear of all of you that are years out and doing great!
LNBCA-I had horrible hip pain after finishing chemo. I had a bone scan that was clear during all the pain, so hip pain can be caused by other things but good to get checked out!
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Christine - I am so sorry to hear this news. It's just heartbreaking.
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Christine..your mom is one of the brightest lights on this board..she has supported everyone...all the time....even tho most of us have never "seen" her we have her and you in our hearts...
Hey Bak...back at your girl!
And to all the ladies celebrating your 2-3-4-5 years out...good stuff....enjoy every minute! 4 and 1/h2 years out now for me and I need to keep reminding myself to enjoy every day....its kinda easy to get a little blase and forget the crap of a bc diagnosis and the hell I (we) went through....
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Christine...so sorry to hear your new of your mum...please give her hugs from her bco tn sisters and know that we are hugging you as well
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I am back, just need to talk about my reconstruction visit today.
First of all, I need to lose 60 pounds before he will do diep, which I expected.
Next, he told me my blood supply may not be good enough because I had directed radiation to a mediasinal/im node, but he may be able to use a blood supply from under my arm, no way to know before surgery.
He also said I need to be scanned to make sure my mediastinal/im node doesn't have cancer, kinda expected that, but he told me of a case where he went to do reconstruction surgery and found cancer, well that totally sucks:(
Told me that I shoud be scanned now and then again in 6 months to make sure there are no changes and during that time I can work on getting the weight off.
So, with all this being said I still may not be able to have reconstruction because radiation may have destroyed my blood vessels to a point of no return.
This was supposed to be a positive step for me in healing my body and body image and to get thngs going, but instead I am in tears, feeling deformed, inadequate, fat, and having a tight feeling in my chest and thinking cancer is lurking in there, just a few weeks after my followup visit. My chest is always tight, always has been since surgery, but now I am completely freaking out because of the surgeon being so concerned that there is cancer there. Feeling like I am just too fat to even consider having reconstruction, what a waste of surgery because I am already so unattractive and nothing will help me look better. I have always been looking forward to reconstruction, now I feel like it just may not happen. I know on the whole scheme of things this is not important, but it felt important to me. How can I be so shallow? Our breasts do not define us, right? Will I ever be comfortable with not having any breast?
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Christine, thank you for your mom's address. I'd be honored to send your mom a card. You both are amazing women, and I will be thinking of you and your family often.
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Bak94, your post breaks my heart.
I haven't had recon yet but am hoping to. I so understand when you talk about your body image. I too am having a hard time accepting my body as it is now. It is so difficult to feel attractive when we can hardly stand to look at our own bodies. I am praying for you that the reconstruction will happen and that there is no cancer. I like to say, "God I know you will only give me what I can handle but now you're really pushing it!"We all have our weak moments and we need to be able to cry and scream. I know you will pick yourself up and do what you need to do to get through this.
Jo Anne
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Ok ladies, I have great news, getting my burger on tomorrow, finally my mom has caved in and realizes I need what I can get right now and I did apologize. I explained to both my parents that it was the steroids, not me acting crazy! Can't wait for my burger tomorrow, so excited!
Today was brain radiation #12 and Chemo #2, so far so good, no complaints, got the nausea under control, just have really heavy leg feeling, but otherwise ok. After getting home from another yummy lunch of Chiinese seafood noodle with nuked veges, and Mc D M & M Mcflurry, I was happy. I took a nice nap. Then I went fish shopping with my girls, it was fun. I want them to practice being responsible before we get them puppies when we get our own place after I get all better. I promised they could pick their own puppies and each can have one. They will have good practice with the fish. I picked out a few too, didn't name them yet, any suggestions? All in all a great day. Hope all of you had a great day too!
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On a positive note...just passed the two year mark. Hallelujah. Still undecided if I will continue with the Anastrozole with my ER+ just being 2% and that is basically considered ER-. Will be seeing my MO on the 19th...will decide then I guess. Other than bone and hair loss, the SEs are minor.
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naan...noshing on the foods we wants is happiness indeed! Glad you got your burger on.
Bak so sorry love....perhaps another opinion is in order. Have you considered the docs In NOLA? They do unbelievabe things. My radiated side had terrible blood supplies so an option the do is taking a vein graft from somewhere else like the leg and using it..much like they do for bypass heart surgery. My initial diep left side (rads side) failed and I now have 1 diep(belly) boob and one gap (butt) boob. Now we are working on symmetry and they are looking pretty good if I do say so myself. All this has been done on someone--me--with terrible perferators for blood supplies. The docs there scan the day b4 surgery to find the best veins to use...not necessarily to find cancer and if by chance they see something suspicious they send you back home for follow up. It does not happen very often however. The hospital there (st charles surgical) is out of network for most insurance cos but they really work with you on the financial end, and with 3 surgeries there my out of pocket was no more than my insurance co would have charged me to go anywhere. It is an amazing facility and many women end up there as their local PS tells them that they are not a candidate for recon or they are just too complicated for the local doc to feel comfortable proceeding. Check into other options if you are able. You sound like you want this so bad! I know just how you feel. Where I live docs only do implants for recon and I knew with rads that was not a good option for me. There is also another specialist group in Charleston SC but New Orleans is supposed to be the best (what they do all day everyday) The weight loss is tough. I have been working on it since May and have lost 18 lbs. The usual eating better thing for me. Smoothies with a handful of spinach in the morning and then smaller portions during the day. Once you get the ball rolling it becomes easier. Best wishes to you and a BIG HUGE HUG! Pm me if you have and ? I may be able to answer for you.
Maggie
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Christine,
Thanks for letting us know about your mother. I am sorry for your news. My hope is that you lean on others when you are not with your mother. Sounds like you are a devoted daughter...so cool....Hugs to you.....
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Good to hear from you Bak. I'm so sorry the reconstruction has been such a pain in the butt. I hope the scan is clean and they are able to move forward when you are ready. I thought reconstruction would be more important for my husband's sake than for mine, but the rare times we are intimate he won't touch my reconstructed side. He is a wonderful husband in all others aspects of our lives. I don't know if he is weirded out by it or he thinks I will react strange if he touches it. My new boob really does look good although I opted not to have the nipple done (too afraid of the tattoo part!!). Nothing is easy with this whole cancer crap! Sending you a big hug.
Thinking of Michelle today.
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Julie, It's so funny the little things that makes us happy now post bc dx. ... referring to so happy to get the burger! But it's so true, the smallest things are great.
I have my husband hide my dark chocolate. And one time, he would not release it to me --- and I was in a chocolate crisis. I demanded he get it out right then or there will be big trouble. I told him this was no time to be complaint. He did not give it to me, and the next day I searched high and low and could not find it, I even sent out a question to a few colleagues asking if they had any ideas of where I might look.
)I was addicted to the McFlurry's until I ran it through the Fooducate App. Execessive chemicals including one that is on the FDA watch list. So I went to Dairy Queen for the blizzard. I held it upside down like they do in the commercials and the whole thing fell out in my lap in the car. I think that was intervention. I didn't Fooducate the Blizzard though ... see how I selectively seek and process information? lol
That hamburger is healthier than the McFlurry, so let your Mom know and maybe you can get them now more often! You can make it healthier just by adding a whole wheat bun (some are actually very yummy) and doing without the cheese. But that might spoil the fun of a hamburger. But a hamburger is a good source of protein, as well as niacin and iron.
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Oh Bak, I'm so sorry to hear that you are a bit down. About what your PS said, try not to worry about his remark about getting scanned. They just do that for precautions, and the one woman who he found had additional c, is a rare event. I know you'll be fine, he just wants to have the information available before starting the reconstruction. I don't think at all he suspects anything is going on, it sounds like it is just standard operating procedure for him.
You could seek a 2nd opinion on the whole procedure, and you could explore other reconstruction methods. I know we often feel obligated to our team and don't seek an additinal opinion, but you could do that. It does sound to me that he is just trying to give you the best possible outcome with the surgery. But I remember the feeling when the PS told me it takes as long as 1 year to go through reconstruction, I thought I would be put back together the same day as the bmx. I didn't know how it all worked then. And it does seem like a long time especially when you don't have any tissue expander to help with the temporary transition.
When I was first told of the length of time for the reconstruction process, I kept saying to myself what you have already mentioned: The main thing is that the cancer is out of our body. Cosmetic appearance is a secondary concern only. When you look at yourself, take a deep breath and smile in knowing that you are free of cancer. And use this as an opportunity to lose the weight before your reconstruction.
Think of this now as an adventure to achieving a whole new look. You can work in a little new haircut, drop a little weight and be totally ready, mind, body and spirit for the start of the reconstruction phase.
In losing weight, try to view it as only a modified lifestyle change, and start slow. Build upon each small victory. If you mess up, no biggie - give in for the day and start the next day strong, or the next meal strong. Implement one healthy alternative for one week, and then at week two implement one more new thing, and as you go, you will build upon the success of the previous week, and you will build upon the way each victory made you feel. Pretty soon, you will be a force of nature, unstoppable in your quest and before you know it, your surgery will be here, you will have slimmed down, and today will be only a faded memory.
You can do it! Let us know what we can do to help you!
Oh - I do have a nuturion guide that someone from the TNBC forums got from their BC nutritionist, and they shared it with all of us who asked for the information. Let me know if you want it, and if so, send me your e-mail and I will send it to you.
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Just want to say that my wife is an absolutely amazing WARRIOR! Yesterday she was called down to the lobby of the hospital where she works...where the entire administrative group (the big shots), and all of her co-workers, were waiting. They presented her with the hospital's "Employee Of The Month" award. She was chosen out of more than a thousand employees! Despite her BC, and chemo, she chose to continue to work...and did it every day with a smile on her face and a kind word for anyone who needed it. Even on her worse days, her work did not suffer. I am so profoundly proud of my beautiful wife. I don't know how an old scroungy coyote like me wound up with such an amazing woman!
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Hello,
I've been a lurker for quite a while. My name is Lisa and I'm 48 years old. I was diagnosed in April of this year and have two more weekly taxol sessions and then a 3 week break before surgery. My tumor has decreased but not as much as I would have liked as seen on the MRI about 4 weeks ago. I can't really feel it anymore and they can't seem to find it on the ultrasound but it is still showing on the MRI. However, I'm having a hard time determing which surgery I should have. I was thinking about a single mastectomy with a implant but what about the other side? I don't want an implant on that side along with breast tissue, but I would like some symmetry between the two. I'm under the impresssion that I will be having radation. Also, I was thinking about a lumpectomy and if the pathology report wasn't good, then I could have a mastectomy after. There are way too many choices and I'm just overwhelmed with them. I want to make the right choice. Also, I'm really frightened about recurrence and distant mestastes. The doctors aren't able to tell you if your tumor is of the aggressive variety that comes back or not.
In addition, my axilla has been sore for a couple of weeks, but I unable to locate the source of the soreness. I had a CT scan a few weeks ago and the lymph nodes looked fine. In fact, sometimes, I feel soreness on the left side as well (cancer is on the right). I feel so scared much of the time.
Thanks,
Lisa
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laney64-Certainly some tough choices. First of all, the soreness could be from the taxol, I was terribly sore when I had Taxol, but check with your doc to make sure. Sounds like you have had a good response to chemo, what is showing could be dead or inactive cancer, no way to know for sure until they take it out. Have you had the genetic testing? If so, the results could help with your decision about lumpectomy/mastectomy. It is such a personal decision with so much factoring into it. Maybe make a list of pros and cons, have your doctor help you with that to decide and maybe get another opinion. We all understand the fear, it does lessen a bit as time goes by. Posting here helps:)
Thank you all for your advice! I knew I came here to whine for a reason! Maggs and Inspired I will pm you. Would love the nutrition info and surgery info. I may have to travel for surgery, but must get my body in shape! Feeling much better about everyting today, thank you gals!
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laney64 my wife had soreness in the axilla area on Taxol as well. It was not constant but was pretty frequent...and has stopped since she completed chemo.
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Hi Lisa! Thanks for saying hello - it's nice to meet you. Bak94 gave some excellent advice - which is to make a list of pros and cons. Because it is a lot to have first a lumpectomy, and then a mastectomy (if that happened), why don't you perhaps meet first with a few different surgeons and get more than one opinion? Likely pathology report will be factored in, as well as your age, family history of bc, and any information if you have had the BRCA 1/BRCA 2 test. Now, if you haven't scheduled for the BRCA genetic testing yet, you might be able to get right in. From what the genetic counselor told me a lot of appointments are booked, but end up being no-shows, because people don't complete the paperwork and then end up cancelling the appointment. I was one of those. I was supposed to do it a year ago, and then couldn't get organized to get the paperwork filled out, and then by the time I decided to do it, I had to have an appointment that week! The urgency was that my insurance plan year was almost up and I had met all max out of pocket.
They took my name and called me the next day to tell me of a cancellation. The results came in early as well, like 10 days earlier. I will send you a PM - since my post is becoming a little long. 0 -
I finally got my burger today, a double bacon cheese fat burger with chili cheese fries with bacon, wow, heaven! My mom didn't bat an eye, she finally gets me!
Had brain radiation 13 today, went well since I'm off the steroids, never again!0 -
I have 3 fish so I will name them all of the above, Big Mac, noodle, and burger it is, thanks, love that!
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naan, I had a juicy cheese burger for lunch, yesterday....thought of you when I ordered it.
Hello to EVERYONE!
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A burger never sounded so good as it does today, at 11AM! You all have got me rethinking the dinner plans for tonight!
) With onion rings. Yum-O! I forgot to add though, that I probably won't get to do it, because last night I splurged as well. I had cheese and onion enchiladas, topped with two scrambled eggs, I did trade out refried beans for veggies and traded rice for black beans, but I also had chips and salsa. Oh it was all so yummy!0 -
Hi all, I took a 2 wk break from the boards... end of summer stuff and back to school time. I'm feeling pretty good, but afraid that my cancer has spread to my neck nodes. PET was "inconclusive", but I have some soreness near my mandible joint. It'sa wait and see game until the 25th. then they may do an ultrasound or more scans.
Sherbab, i have a local/regional recurrence, and now a pssible spread to nodes in neck. I'm currently on Xeloda, which probably will be switched if they think it's not working. ACT worked very well for me, but bc of toxicity to the heart, they would probably use something else and keep that as a last resort. i have had only 1/2 of my lifetime limit. Keep positive.. even with spread I'm living a productive (mostly happy) life.
Lili, I also work with the public. During my chemo I didn'tget sick other than stomach issues from antibiotics used prophylaticly (sp?). As far as psoriasis, mine cleared up completely with chemo.. one huge benefit of chemo. They actually use methotrexate (chemo drug) to also clear psoriasis. Funny thing is, although I usually get atleast 1 good chest cold a year, since dx I've not been sick with a cold or flu at all.
Graceforme, I too sometimes get tired of how "strong of a woman" I am. I know that people are just trying to encourage me, andI'm sure to them I appear strong. But I'm just doing what most of us do when faced with a life threatening illness... we go on living and taking care of family and work because there are no other alternatives for us. We enjoy life and want to keep living it the best we can. But they don't see me crying into my pillow every night. Nighttime is the worse... my mind just starts spinning and the more I try not to think of a negative outcome, the more I cry. Eventually, I fall asleep, and the cycle begins again the next day. I think as long as the cancer is still "in me", this will continue.
Julie... you really make me laugh with your stories. You should really take your posts and record them into a journal. I think it publishable (sp?). I have a very good asian friend who lives in San Fran and she keeps me laughing at her "mother" stories. I don't know if its cultural or not, but it seems like your mothers are tough cookies!!! Mine is Irish/German and even at 86, she is one tough bird! Gotta love moms especially when they try to protect their "babies".
I wish the rest of you well also. So manyposts since I last logged on... hrs have flown by.
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Hello everyone... I have been slowly reading about TN and am a little scared and worried. Long story short, yes I am TN. As my siggy tells my story I won't go into it. Just that I'm scared, that I will have a recurrence. Not sure what to think. My onco tries to reasure me, but I have been reading and the reading hasn't been good. Not sure what else to say other than I am only 38 and I have at least 40 more years to live and I want to live them!
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Inspired, I know what you mean, who knew just a few years ago that I would be crying over a burger and excited about one at the same time. I was so inspired by the whole burger incident that I bought 3 fish and with the help of friends on another thread named them Big Mac, Burger, and Noodle. Big Mac and Burger are black gold fish twins, can't tell them apart, so my girls were like, how do u know which is which, i said, they know! Noodle is an actual orange colored goldfish. Don't u love the names? I hope u finally did find that chocolate and enjoyed them!
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Alhusband, only someone who knows how good you have it deserves someone like your wife. It took my husband 2yrs and me going from Stage 2 breast CA to Stage 4 to realize how wrong he was treating me. He has changed 360 degrees and I know he regrets what he did. Your posts are so heartwarming and I know that your wife knows. Like the old saying goes, it takes one to know one, you are a great husband because you have a great wife and vice versa! Tell your wife congrats! I was such a wimp and quit right after I was diagnosed cause I was working at an Adult Day Health Care Center, with many sick seniors. Didn't want to deal with germs, ... I can't imagine working during treatments like a lot of us here do. You are so strong and brave and I admire all of you, who continue to work during this difficult time in your lives!
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Lisa, there are many of us who don't have recurrences and have gone 2, 3, 4, 5, 6, 7, ...yrs with no symptoms an heatlhy living life. Don't get too scared. Be reasured that you can be one of these folks, who comes in and cks in with us yr after yr, encouraging new fighter that you are doing great! Hang in there and welcome!
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Navy, glad to hear u got your burger on too!
Inspired, that sounds so good! Gotta try that next!
Slowloris, you know what, you're right Asian moms are tough, mine especially. She was the type of mom who not only nagged at you, but nagged at my friends too. I got married at 29 and some of girlfriends went past 30. Everytime they came over she would be like, so when are you gonna get married, time is ticking, you're not getting any younger. That's my mom. She used to also nag at them about what they were wearing or if she thought they look a little too heavy, Asian moms are too hones, especialy mine. Thank goodness my friends ignored what she said, or I would've ended up with no friends at all. I like the suggestion for publishing my post. I'm working on a blog, maybe I might turn it into a book someday, who knows. That would be a dream for my mom. Oh one other thing my mom told me recently. She was impressed at how much research I did about my illness and how well prepared I was as patient, since it's the second time around for me. She told me when I get all better, go to Med school and become a Dr, I think she secretly was hoping I had become a Dr, instead I became a teacher like her. She was disappointed, I recently found out, since she's pushing for me to become a Dr. I'm 41, have Stage 4 cancer and she wants me to apply for med school. Gotta love my mom! I told her the stress of med school will kill me, I think she got the message!
Melissa, so sorry that you have to worry about recurrence. I will not tell you that it won't happen. I am not God. Only he knows. What I can tell you is he only gives us what we can handle. I have a recurrence, I can handle it. I am so thankful that my elderly parents are healthy and my older brothers are heatlhy, my older sister-in-law, a cancer survivor is heatlhy. If they were the ones with my dx, they would not be able to handle it as well as I am. I was first diagnosed at 39, am still ticking at 41 and plan on ticking til,.... 101, like the dalmations!
I have 2 beautiful, young daughters that I have to be there for, they are Olivia 10yrs old and Heaven 7yrs old. Tooo young to not have mommy around. My 10yr old started her period this past May, I can't imagine her going through that special time without me. She skipped a few months then started again last month. She started the same day I was hospitalized and she was so scared cause she had to deal with it by herself. My husband was so worried about me he mentioned it too late and I yelled at him. I called my sister-in-law from the hospital right away and told her to help her with supplies and make sure she knew what to do. My husband broke the news to the girls that night, since I didn't come home and they were so worried. Olivia cried and screamed, I think the hormones were a big factor, but she had been through it once so she was devasted. I told him not to tell her I was Stage 4 yet, don't want to scare her, they both know now that mommy is much sicker than before, but will do everything and anything to win this fight for my babies! I AM STRONG, I AM A MOM, I AM A WOMAN. God made us have babies, y? Cause you know men are wimps, one bout of morning sickness, please Dr, take it out of me, I can't stand it anymore! If I am Stage 4 and know I will win this fight, I don't think you have anything to worry about! We will live!!! You just wait and see!
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