Calling all TNs
Comments
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Thank you all so much for your responses. It is so helpful to know we are not alone with these feelings. Cocker, I think I said this once before...Can you be my shrink?
Your thoughtful words get me thinking, lift my mood and give me hope. You make me feel Strong. And you're right. I think I really have not yet processed this past 10 months. How the heck did this happen? I had no medical history before last January. So I am not sure if I am experiencing PTSD or anxiety about the future, or maybe both? Hopefully I can work through this, and be of help to others. I have to say that the period just after diagnosis, and after treatment was finished, have been the toughest times for me. Heck, who knew I'd say 2 surgeries and chemo weren't so bad?
Lillierose, Talk to your docs. I am so stubborn and did not want meds or therapy, but I have to try...because it just may help. I want you to feel better.
ADark, thanks for letting me know your experience. I am on 10mg, but wondering if I should be on 20mg, as I see that seems to be the norm?
SA8, I do think we get "flat-left" at the end of treatment. I did not want to have to seek help after treatment, and maybe if it had been offered sooner, as an on-going part of treatment, I (we), wouldn't have to feel this way now, almost a year since diagnosis.
Thank you to all who have reminded me that TN has many, many long term "survivors." (still not sure if I like that term?) Knowing you are here means a great deal!
Simple, my recon consisted of an implant on the left and a reduction/lift on the right. I look ok in clothes, but am a size and a half bigger on the right...so another reduction is planned. The implant side has a big crease and several large indentations/ripples, half the pigment is gone from the nipple, and of course, no feeling. Hopefully, fat grafting can fix some of the indents/ripples? Having a second reduction worries me, as I think keeping the nipple is riskier the second time around. I wished it had been reduced enough the first time. I am not obsessed with how they look, but I would like to be able to wear a normal bathing suit without looking scary. Looking in the mirror every morning just reminds me of this mess...I don't want to miss more work, or not be able to exercise for another 3 months...just want them fixed and done. I told my PS to make me smaller...he just didn't go small enough.
Hugs to all of you, quick healing for Cathyviolet, and Trish, I am sorry you have to be here...but you are welcomed and will find Much support,
arlene
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Hi all,
I don't even know where to begin. I have just read many posts from all the incredible women on this site and I am left speechless. To go through what we are all going through and for you to all articulate it in such way as to inspire all of us who are still going through treatment is awe inspiring. I am so blessed to have found this site, as I am not sure what I would do without all of your support and guidance.
Cocker, Meadow, Sylvia and all of the other long term ladies who keep posting on this site...thank you. You give all of us hope things may turn out ok.
Arlene, thank you for bringing up the post treatment issues and struggles you are going through. I am having my 2nd last treatment tomorrow and I am already really nervous about the chemo ending. It just feels like everything treatment wise just quits and I am left wondering "what next". I know I have to have radiation yet to come, but in my mind for whatever reason I feel like chemo is my only chance at surviving this mess and not to be able to get it anymore seems just wrong to me. Who thought I would ever say that?! I hate how sick chemo makes me, but it helps me to live. I will take your experience and advice and start looking for someone (professional) to speak with.
Thank you to all of you and please don't stop posting. All of us need you, we need each other.
Cindy
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Did any of you end up stopping your chemo early? I have 4 more Taxol/Carboplatins to go but am starting to wonder if the neuropathy is worth it. The tingling in my fingers started on the second treatment (earlier than typical) and has moved on to shooting pains in my elbows and knees. I am terrified of having to live with this permanently. I know this is all a question of balancing risks (recurrence vs permanent nerve damage) without good information or any sort of crystal ball
Maybe I can drop just the Carboplatin? Or lower the dosages?
Any input would be appreciated.
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(((Cocker))) Sending much love to you. Thank you for such a beautiful post. I didn't think it was a rant at all. xo
Arlene - I can really relate to your post. I try so hard every day to be thankful and get upset with myself on the days where I let the fear really creep in and take hold. Please don't beat yourself up. I think every single survivor has these tough times. Good for you for seeing your doctor and addressing them. I'll be sending you prayers that the medication starts doing its job quickly.
Trish - so sorry you're joining us, but this is an amazing group of supportive ladies. Welcome.
Cindy - the end of chemo was a very tough time for me too. Know you're not alone in feeling this way and we can all relate. Sending you many hugs.
Peabrain - I was on Taxol/Carbo after AC as well. The Carbo was the hard one for me. I was on a dose dense regimen every 3 weeks. My onc ended up cutting it back because my blood counts just weren't bouncing back. It helped a lot and I still had a complete response. My counts still remained low and I needed one transfusion, but they never got low enough to miss any subsequent treatments. If it were me, I would consider lowering the carbo or dropping that first before considering stopping chemo altogether. I can understand though wanting to weigh all options with the possibility of permanent damage. Sorry you're dealing with this. Keep us posted on what your onc says and hang in there.
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Arlene..............I posted this on another board. I know the fear.
I have been on anti-depressants since 2004 and was diagnosed as having "situational depression". I lost it when I was diagnosed and I had a cloud over my head for a long time before I took the anti-depressant. I tried coming off several times and it was an absolute disaster. All I did was cry and thought about death all the time. So for ME, it is best that I continue take my Lexapro 20mg. I still climb into the rabbit-hole at times, but usually I don't stay too long. . At first I was very apprehensive about posting here because of having been diagnosed twice. I was so worried that I would make others afraid....thinking it would happen to them. My second diagnosis wasn't a recurrence, but a new primary in the other breast. My BS said that was "good" news, but I had the hardest time accepting it. She was my breast oncologist the first and second times...we had history. During one visit I was so out of control. I screamed at her saying that breast cancer was not supposed to happen again and told her it was her fault. I even blamed my mother. When I was first diagnosed I wanted to get a mastectomy, but my mother talked me out of it. I told my doc that I should have used my own mind and not listen to my mother. Poor doctor had to tell me that my mom didn't give me the breast cancer the second time. I blamed my mom because I felt that if I had the mastectomy I wouldn't be going through this crap again. She went on to explain I was at high risk because of having had breast cancer the first time. She never told me that. I assumed I was done. Never in a million years did I expect to get diagnosed again. And to be diagnosed with triple negative breast cancer...I was beyond consoling. I thought it was surely a death sentence. I work in the medical field and knew all the lingo". I told her I was going home to die and I was not doing chemo AGAIN. My sweet husband just looked at me with tears in his eyes. He couldn't believe I felt that way.....that I wanted to give up. I was checking out and she saw me crying my eyes out. There was no consoling me. I saw that she was on her way to see another patient.....she stopped and called me back. She read me the riot act...but with love. I will never forget that. She said she couldn't believe I was acting like this....she was seeing someone she didn't know. I told her....that she could never in a million years understand how I felt. The banter went on and on. She talked to my husband and I for about an hour. To this day I consider her a friend.
Phewwww.....I don't know where that came from. I guess I needed to get that out. ...you will have more good days than bad, and sometimes you will find that you don't even think about cancer...as much. As the saying goes "I got you", as well as the other ladies here.
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I am very rarely on here anymore, but this thread was a godsend to me when Titan started it. I am more than 6 years out from my diagnosis and doing fine. I've had a few scares now and then, including a breast biopsy last April, but thankfully all negative. To those newly diagnosed, be assured that the vast majority of us go on to live healthy, happy lives, free of BC. For those struggling through treatment, stay strong... for sure it's crappy, but know that you are doing your best and giving yourself the best future possible.
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Luah, thanks so much for letting us know you're doing so well!!!
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Luah, thanks for the encouragement! And it's really good that people do check back in every now and then because it's easy to assume the worst when someone just "disappears" - so good for people here to know that they have been out living their lives rather than something bad.
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Peabrain
I did stop my chemo early. We did not do the last Taxol. I had 3 dose dense treatments every two weeks. Each time though she reduced my dose by 20% because my neuropathy was so bad. I had a scan after the last dose and it showed I had close to 1 cm left of tumor. We were happy with that since I started close to 5 cm before the AC. To everyone's great joy that mass was actually scar tissue and I had a complete response to chemo. Nothing left.
My neuropathy has cleared up in my feet and right hand. My left hand still has some but not as bad.
I know you will do what's best for you.
Hang in there
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I must tell you a little story. If it's too breezy to take the dogs to the lake because the southerly comes down the lake from the mountains, I take the dogs for a walk up the Botanical Gardens. This is good for me because I can get 4,500 steps on my Fitbit and even more if I go down the one hundred and one little walks off the main path. My local council provides pooper scoopers and green bags because you must pick up after your dogs or you get a hefty fine, as you should. I don't take the scooper as its too big to fit in my jacket pocket so I just take the green bags which I turn inside out when I need to pick up and then turn it back to the right side. Today I set off with Tessa my Cocker Spaniel and Chloe my feisty little Maltese Terrier. All was going well until Tess needed to poop. I bent down to pick it up and Miss Feisty saw a dog coming towards us. She was going ape shit and in my haste to rein her in I didn't realise the bag was not in my hand and when I looked down I had picked up a great big piece of poop and it was all over my hand and the handle of the leash. The lady with the Alsation dog thought it was funny but I was mortified with embarrassment. Here was my little Chloe trying to eat her big Alsation and I was covered in poop. I was so mortified I wacked her on her rump (with the other hand because she is white!! and she only had a bath two days ago). So of course we had to trot off back home. What makes you think its Friday the 13th. Hopefully my predicament will bring a smile to your face and help you to forget cancer and its treatment if only for a few minutes.
Arlene I told you I would be your shrink some time ago and even set up an appointment but you DNA'd on me. I was even going to reduce my fees!! lol.
Ally the fear always creeps in but its stopping it from taking a hold that's the key, although this can be very hard to do and you are not alone there. Whenever the fear comes I try to push it to the back of my mind and tell myself I am not going there today. I think we will all always have this but if we can learn to stop it invading our every thoughts it will be a miracle. I also cannot stop checking myself every time I have a shower and although this can be a good thing it can also be mind altering as well and wreck my day. Hopefully one day ..........
Phew Shorfi I am glad you got that lot off your chest. I remember being angry with myself for getting the darn cancer in the first place when I never thought I would, though God knows what made me think I was so special and immune to it I don't know. I'm glad you got that out and this is the very place to do it.
Luah so glad to hear from you and to hear you are doing well. This is just what our ladies need to hear.
Notdoneyet your words are so true.
Peabrain my taxol was stopped early I only did 7/12 because of neuropathy. Knowing my job, my oncologist said it would be irresponsible of her to carry it on and me not be able to work again. I am just left with some slight numbness in my ring and little fingers.
Cindy (lovely name that, my eldest daughter is called Cindy). You know as fearful as I was at starting chemo I didn't want it to finish. Stupid aye but I wanted it to keep on fighting for me. I think it became my safety net in it's own way even though part of me didn't want it. I think my thoughts were so jumbled up at the thought of the diagnosis that I was ready to hang onto anything that would help me. I also sought help from a clinical psychologist through my work and she was marvellous so go for it and hopefully you will get a lot of help.
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Cocker, that was a great story and I laughed out loud, thank you so much.
I also stopped taxol early, although not super, I got 11 of 12 and my MO was totally unconcerned, he said "11 is about the same as 12" Lol. I stopped because I kept having low numbers and was just getting frustrated and wanted to move on to the next thing (I did carbo taxol FIRST, now doing FEC/CEF).
At first this whole thing was so horrifying I found it very difficult to even look in the mirror, wash, or even dress. I felt like I had been invaded by an alien monster and didn't want to see or touch the offending area. Now that chemo has greatly reduced the outward signs I check "the area" at least twice a day, and some how that is reassuring.
Before this happened to me I never thought about breast cancer because I had no family history and it wasn't something that was going to happen to me. I was so shocked when it did.
I am tired of people trying to explain breast cancer away. With lung cancer you might expect (clearly not always true though, I realize) that someone smoked, but there is no such direct causation for this - we didn't "do" this to ourselves. I have a cousin with end stage liver failure in his 30's. He DID that to himself (by being an alcoholic). My cousin's terrible problems and my terrible problems are hardly related. I was just going along with my life, living what I thought was a relatively healthy one, then bam! I was interviewing RO's and the one I did NOT choose looked at me with pity and asked "were you exposed to a lot of chemicals?" (I am a veteran and yeah, I probably was, but nobody knows if that has anything to do with this).
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Cocker, thank you for your story. My ginger ale almost came out my nose! Lol. I have had a few mishaps with dogs and poops, as well. And my Augie weighs 72lbs, so you can imagine what he is capable of...heehee.
Luah, thank you checking in! It's great to hear you are well.
Shorfi, thank you for telling your story. This BC can be so rotten. And it takes our energy, our emotions and sometimes our strength. We are only human, and get worn out sometimes. Venting, talking, telling of our stories and feelings can only help. I Got You, too!
Ally, thank you... I am on a low starting dose and am already having anxiety wondering if it should be raised or let alone. I seem to be getting better at pushing BC thoughts out of my head, but still feel wishy-washy about planning or doing. I actually make myself laugh because I think I can have anxiety about Anxiety! Lol.
Notdoneyet, I never thought about BC either, because no one in my family has had it, tracing back 3 generations.
Cindy (one of my sisters is named Cindy), yes, be proactive. It can't hurt, and if it helps---then Great! I had a 5 week wait for recon sx after chemo was finished. I could feel weird feelings creeping up on me...and attributed them to anticipation and worries about recon. Well, the surgery was a piece of cake compared to mx, and a week later I was ready to get back to life. I think that's when all this hit me. It took me 3 months of ups and downs to finally realize I need some help maintaining the "ups." I am determined to get the "old me" back.
Thank you all so much!
Keep those stories coming,
Hugs,
Arlene
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I sit here with tears in my eyes from laughing after reading Cocker's story! Arlene, your response just added to the tears!
THANKS LADIES!
(I have been keeping up with reading posts but have fallen so far behind in responding. =(
Hoping you are all having a good day, - even if it's Friday the 13th!
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You can imagine how I felt ladies with this warm, squishy feeling hand. If I had of been the heaving type then would have been a good time to do it.
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Cocker
That is such a funny story. I was laughing so hard the children wanted to know what was so funny?!?!? I told them: half fell on the floor laughing hysterically and 2 started dry heeving as I am yelling please don't throw up!!! It was quite a circus act this morning. Hehehe. Thank you for sharing. Made a great start to our day. LOL
Shorfi thank you for getting that off your chest & expressing so well what we walk through. The mind is a powerful place that we are constantly fighting.
Luah. Awesome on 6 years!!!! Keep em coming. So happy for you.
Notdoneyet completely agree!!! It is so sad that we still can't explain cancer.
Ally, Luv, Another, Arlene, Shari, Sylvia, blue dog, trish, Cindy & everyone else (I'm sorry if I've missed anyone) continued love & healing as we all press forward The love, support & comfort we receive from one another is truly priceless
Thank you everyone
Have a blessed weekend
G
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Thanks so much for the laugh and great story, Cocker!! Although I'm sorry it happened!
In the spirit of another Friday Funny... When my hair first started growing in it was really sparse on top. I bought this product called Toppik, which are hair fibers you shake on that bind to your existing hair, helping to hide bald spots. As infomercial-ish as they sound, I really love them and still use them on my thinning part to this day. Well, the very first time I used them I was in a hurry. I shook them all over the top of my head, thought it looked great and ran to the grocery store. For some reason my card wasn't running through at checkout. They had to type the numbers in, call another associate over...and of course I was getting glares from everyone waiting behind me because I was holding up the line. And the cashier kept giving me weird looks too, but I didn't think much of it. By the time I got home, my husband was home from work. We were chatting in the kitchen when all of a sudden he says to me, "What the heck is all over the tops of your ears??" I went over to the mirror and to my absolute horror I had a layer of these fibers on the tops of my ears!!! Like a good 1/4" thick!!! Since they bind to each other they must have just kept building there lol. And of course with my apparent buzz cut, they stuck out even more! Turns out the fibers need a coat of hairspray to stay in place. All I could do was laugh...and never forget spraying them in place again!
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Cocker, thanks for the belly laugh! Hahahahahaha!!!!
Arlene hang in there honey! It will get better. Sending you a big hug!!
Ally thank you for the belly laugh as well!!! Too funny!!
SA8PG, thanks for checking in!
I'm praying for each and everyone of you on here!!
Hope everyone has a relaxing weekend.
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My first laugh of the day. Ally did you look like a werewolf. No wonder your card didn't recognise you!! So funny. Thank you. Pity you didn't take a photo would have loved to have seen that.
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Just wanted to drop in to say that my checkup with my MO and BS on Wednesday went great. I'm 27 months out from diagnosis and starting to think that I might actually make it. One day, one week, one month, one checkup at a time!
Ally, your story really made me laugh! Thanks. I think we all have funny stories relating to our treatment....but your's was REALLY funny!
My heart goes out to those recently diagnosed. It's so scary in the beginning, but it does get better.
Hugs to all!
Kay
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Woo hoo Simple so glad all went well with your check up. Keep going, you'll make it.
It's such a beautiful day today I'm going to wash my car.
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See ally you can have hair over your ears
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Simple. So happy to hear this wonderful news. Congratulations!!!!
Ally. I loved your story too and I like the idea of funny Friday. We should keep that going on here. Lots of laughter today with you & Cocker's stories. Love you ladies.
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YAY, Simple! Great News
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WooHoo Simple!!!! Thanks for letting us know your good news!!!!
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Good evening! I'm newly diagnosed with TNBC. I haven't had any treatments yet. Tomorrow I meet with my treatment nurse but I believe I will be getting Taxol and Carbo. My Cancer grew from .9 on the ultrasound to 1.8 on the MRi in just 3 weeks. I was supposed to get a bilateral mastectomy this week but oncologist recommended chemo first. I hope that's the right path. Ct and bone scans were clear. Waiting to get a lymph node biopsy. Hopefully this week.
Hoping and praying for everyone. I am so ready to kick this!
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Hi Cel-
We wanted to welcome you to our community here at BCO! You have come to the right place for support as you begin down this road. You are not alone, and we're all here to walk it with you! Good luck at your appointment tomorrow, please keep us posted!
The Mods
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Welcome Cel. Glad you found us. A lot of ladies have chemo first so you are not alone there. The TN cancer does grow aggressively but responds well to chemo and radiation. There are a lot of ladies on here that are years out and you will do just fine. Good that your CT and bone scan was clear as was mine and I am four years out now. Really glad that you are ready to kick this diagnosis. It's not a walk in the park but it is doable. If you have any worries or questions please come back to us and the ladies will do their best to answer them and reassure you. You won't have to go through this journey alone. In your pocket for your biopsy. Hugs. xx
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Simple, great news!!
Welcome Cel, this is the best place to be, a great bunch of ladies.
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Morning ladies! I've had a bit of a rough couple of days. I'm having some pains below my ribs/abdomen on the right side. It's not that I'm in a great deal of pain but my mind is taking me to bad places. I'm scared of mets obviously! I'm worried about it being possibly rib or liver related. I haven't felt sick or lost weight. I need to lose a few pounds honestly. It doesn't really hurt when I sit still but when I get up I notice it and it's a little tender to the touch. I haven't lifted anything too heavy or anything. I was going to post in the not diagnosed with a recurrence or metastasis but concerned forum but I was honestly worried about the answers I'd get. Haven't been this worried in awhile. Yikes! Anyway, will you please keep me in your prayers? Thanks!
Welcome to the forum Cel! Sorry you have to be here but it's the best place to be. HUGS!!!
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Cel-welcome, sorry you have to join us here, but you'll be glad you found us! My tumor was fast growing too, grew over a cm in the month between dx and starting treatment. I started with chemo first as well. The good thing about that is you'll know if the chemo regimen is working if the tumor is shrinking and if not your doctors will be able to change the regimen. I have only 4 rounds of chemo left and my tumor is undetectable by feel now, used to be easy to find. Haven't had a scan since after my 3rd round but it had already shrunk to half it's original size. TN tumors in general seem to react well to chemo from what I have read. We are here if you need us!
Luvmydobies-prayers for you, hope it's nothing serious!
Hugs to all! Hope everyone has good week!
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