Calling all TNs
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Thanks, Tif! And Heather, I'm taking Fifty Shades with me on the plane...half way through the first book and the other two are sitting on my counter waiting for me. My daughters read them all and so I am all set.
I will post some pictures here, but be sure to check my blog for most of the details. I decided that going to Paris is an important part of my breast cancer journey, and my loyal fan club deserves something more fun than the results of the latest PET/Ct scan...LOL!
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Hi ladies, I was recommended to visit this board by Luah so hope you dont mind me jumping in.
Quick background on my diagnosis: Age 52, diagnosed 52 - Clear mammo in July 2011. Found lump in right breast Dec 2011. Doc sent me for further mammo then biopsy and diagnosed with IDC/DCIS/TN Jan 12/12 - first chemo (protocol ACD) treatment Jan 27 - last one June 22 (nearly there - yippee). Meet with RO and surgeon on June 13/14 respectively for next chapter.
To all the Sisters in the States, enjoy your Memorial Day weekend.
Cocker_spaniel.... if you wanna chat I'm in BC, Canada so will be here too if you get the urge to chat - no 3 day weekend for us.
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Tazzy, glad you found us over here. Welcome to the TN thread. You'll find a wide mix of wonderful women here, all connected by our diagnosis and the unique trials and tribulations that go along with it. Quite a number have done chemo first as you are doing, and many have talked about how their cancer seemed to appear out of nowhere and grew quickly. Most of us have thankfully gone through treatment and come out the other side, getting on with our lives, in a new kind of "normal." Sadly, we have also lost a few dear members here and others are fighting recurrences, with the hope, inspiration, ideas, and information shared so freely here. It's a great bunch... we talk about everything! (though it seems uncharacteristically quiet this afternoon, I suspect because of the upcoming holiday weekend in the U.S.).
Ladies, I haven't posted much lately, but read regularly. You're never far from my thoughts, but I'm grateful not to think constantly about cancer anymore. Just got back from a fun 2-day trip to NYC with DH.
Big hugs to Inmate - I hope things go better soon, you are one strong chick! And hi to mitymuffin - nice to see you back. Titan, I feel sick when I hear about young women like your friend's daughter. McCrimmon - good to hear your move went okay and you're getting settled. Cocker - it starts somewhere, baby steps, and before you know it, you'll be counting miles. Lovelyface, hoping you get some good answers on your scan. Luv - have a wonderful trip, you deserve it! I know I am missing many others, sorry. Just wishing you all a great weekend... with a few peaceful, SE-free moments to enjoy life.
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Forgot to mention, an exciting study that was in the news today... looking at a drug that attacks cancer stem cells. It included study of effects on TN BC cancer cells... so this may be a promising area for future research and treatment options. http://www.theglobeandmail.com/life/health/new-health/conditions/cancer/other-cancers/drug-could-attack-the-root-of-cancer-cells-study/article2442826/
There is more here, including a link to an interview with the lead researcher from McMaster U in Hamilton, ON: http://fhs.mcmaster.ca/main/news/news_2012/targeting_human_cancer_stem_cells.html
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Thanks so much for sending me here.
When my doctor first said to me that I was also TN (as well as DCIS/IDC) I said to her... `that's a good thing eh?` I had no idea. I look back now and just think how sometimes ignorance is bliss. But onwards we move and come out the other side better for it.
I feel a little in limbo now... waiting for the RO & surgeon appts.... I know what to expect with the chemo - radiation and surgery-recon are a different thing altogether.
Am glad to have all of you to share this journey with.
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Oh and thanks for the links Luah... I will read them shortly. I am going into my yard to plant some flowers in the sunshine.
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Luv I am now on book 3 love them! Have fun on your trip!
Tazzy welcome to our board! This has to be the best group of ladies ever!!! Chemo is the worst part of treatment, radiation is a breeze!
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Tazzy - welcome. Great you are here. I agree with ksmatthews this has to be the best board. We are very active and post regularly. The ladies are wonderful and kind and full of all kinds of advice for every situation. I sure as hell couldn't do without them. I am on Taxol and doing well with it so don't know about radiation yet so I am hoping ks is right and its a breeze. You will be ok and with the advice on here treatment will be over before you know it. Annie
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Ok ladies, listen up, I have heard through the grapevine that 50 shades of grey is a very very frisky book. So you had better prepare your husbands for tonight!!!. Might have to read it myself cause there's life in the old dog yet.
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I have been reading and keeping up but haven't posted in awhile. Welcome to all the new sisters. Sorry you're here but you will find all the support, love and information you need. I know how scared I was to be TN but also know a few women who are going on 15 years NED and they're TN. My husband's Aunt was ER+ but couldn't take the drugs for that so she's now considered to be TN and she has been fine for 12 years. There are always success stories and always those who we lose to this horrible disease.
As for no chemo.....my MO said that it's a crap shoot. She said that some of us are "cured" after surgery, some after surgery and treatment and some of us never are. There is no way of testing to see which we fall into. Chemo is personal choice and at the end of the day it's about quality of life and what is best for you. I felt that chemo was not optional for me because of my young children, my young age and my husband. I was scared to death of chemo but knew I had to do whatever I could to fight. So that's why I chose chemo. I respect everyone's decision and whatever decision you make, it's the right one for you.
Happy long weekend to the US sisters. I have 25 bags of dirt to spread after digging out all the weeds and overgrown plants in my garden out back. It's going to be a busy and dirty weekend!!!
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Taxzy - Welcome! Ah, the unknown!!! How brave we all are. If you have questions, Just ask. Take good care.
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Welcome Tazzy. I finished my chemo on dec 29th..and then did 35 rads ending on Marxh 16th. I really breezed through the rads with no horrible side effects that could not be managed. I am still awating recon once I get some lymphedema under control on my left arm and hand. Hang in there you are almost done with the toughest part. Be sure to join the thread with others who are starting rads when you are so you can compare notes with them!
Bon Voyage LVRVING!!!
Maggie
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Thanks so much for all the advice and welcomes.
I am really looking forward to no more chemo.... although compared to some I know I have been very lucky with the SE's. Chemo is without a doubt a very personal choice - it was the right one for me. There is no right or wrong.
I will definitely look out for the threads on rads and others starting around the same time as me.
I have started on the drug trial for denosumab... anyone else ? I started a new topic on these boards and have had a couple of responses... just wondering about you ladies. When my MO mentioned it to me... after careful consideration I just thought 'why not'. I mean it is a double-blinded trial, I just figured that if it can help another woman down the road (if not me) then its a good thing. I always said (before being diagnosed with cancer) that if I ever got a disease or illness and could be a 'guinea pig' for some new drugs I would.... never actually thought I'd have to make that decision - but here I am.
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Ow. Very very sore still, in spite of pain meds. And I just found out - no swimming for 4 weeks! Argh!
There goes the weekend at the lake.Chemo - so I did AC/Taxol first time around. Obviously it was not completely effective, as here I am back with a local recurrence 3 years later. I certainly want rads since I didn't do them last time. I'm a little more on the fence about repeating chemo. If they'd offer a different type, with more chance of success, then I'd consider it. But right now I'm not sold on the idea.
But TN first timers, I'd definitley suggest chemo since it's one of the few weapons us TNs have in our arsenal. Just hoping they can better tailor chemo regimens to types of cancer in the future. When I think about all the miseries I went through with AC/Taxol, just to have this hideous beast rear its ugly head again - well it makes me sad, upset, and angry.
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My thryroid biopsy came out inconclusive, there weren't enough cells taken in the sample to give me any sort of result. Very disappointing. The doc gave me 30 seconds to talk when I called their office to find out my results. I find that many of these doc offices don't know, don't care about us BC patients. He said I should have another biopsy. What? what the hell! He said there is only 80% chance that a biopsy will have enough tissue to give a result. He advised against a surgery, maybe he hasn't heard me say a million times that I have symptoms of neck pain, and looseness, lethargy in my body, which seems to me is coming from this thyroid nodule. Someone had written (maybe Christina) about her thyroid nodule before. Please tell me what you think of this? Should I have another biopsy which again might be inconclusive or should I have a surgery. When they do surgery, can they just take the nodule out, or would they have to take the whole thyroid out? Please write if you can, I do well when I have a plan. I myself doubt seriously that this could be BC, doc said, he seriously doubts BC can metastasize to the thyroid, although I have realized that many of these docs have no knowledge about BC, absolutely none. Or what we go through for that matter. He was very unkind to me, and said to me I had 30 seconds on that first call. When I called his office again, he said, he did not appreciate getting two calls from me today. I don't think I ever want to go back there again. Not sure how I am going to deal with this problem with two bad doctors now, my primary care and now this endocronologist. I had previously written about how great he was, check out my last few posts. Now I am truly realizing how awful it was to hear him say such things when I am so stressed about this brand new problem, a large nodule in my right thyroid.
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Luv...have a great time in paris..can't wait to see pics...although maybe not the frisky ones Cocker talks about...
Cocker...BC is serious business but you make me laugh soo much...thank you , thank you thank you...and way to go on your walk...can't believe those dang dogs didn't show their appreciation...
Hey Tazzy...nice to meet you lady...alot of us tn's found our own lumps..clear mammos..then wham..there is this lump...makes you kind of wonder doesn't it...give me a good manual breast exam every 3 months...rather than a mammo.
Lovelyface..I understand your frustration....all you need to know is what is going on..I don't understand why you are having to go through this...it isn't right...I guess you can hang on to the thought that it probably really isn't anything...but you need to know FOR SURE....start screaming or something..stop being nice..you are the patient here and paying the bills
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Thanks Titan. Its so great to be able to share our thoughts and fears.
Not sure if anyone else felt this way, but now that I am coming close to finishing chemo (only 2 left... June 1 and June 22) I am thinking more and more about having TNBC and all the fears that go with it. When I was first diagnosed everthing seemed to happen so quickly and treatment start so quickly that I never really had time to think. Plus chemo was going to zap anything and everything in my body that shouldn't be there... wasn't it???
At the moment I feel as though I am nearing a cliff edge and although still have to go through rads and surgery the closer my chemo gets to finishing, the closer to that cliff edge I am.....
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I think I'll get the 12 year old to show me how to hook up the wii and start doing yoga on wii fitness. I've been mad at it, since it told me I was fat
I did do a little on the pilates platform today - like Annie - Titan inspires me!!
Taxzy - for me after chemo, radiation was cake! I hope you are getting the trial drug and that it works wonders.
Lovely - I'm sorry you are right back where you started! I hope
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OBXK - this is too funny! ha! ha! ha! As I was reading your post, and you mentioned "cake". Now I feel like going to get some cake, and believe it or not, I might just really do it. I have to go and get myself a nice big chocolate or sponge cake and shove it down my throat. This is the trick that will be good for me tonight. Thanks for mentioning that amazing word.
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Lovelyface after your day today... you deserve cake.... enjoy! Mmmmm... cake
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Lovely - damn now I want some!
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Lovelyface - Wow, hard to believe that any doctor could actually be that insensitive! I think if I was you, I would 1) find another endocrinologist and 2) ask him/her if the "only 80% chance that a biopsy will have enough tissue to give a result" is accurate. You need to have an answer of some sort and it doesn't sound like you're going to get it from Dr. Brushoff. If the second doctor says it is unlikely to get a result, ask their opinion about the surgery and what that opinion is based on. It's bad enough to be going through what you are without having to deal with bad doctors. Good Luck!
Tazzy - I know it's easier said than done but try not to think about the negatives related to TNBC. For one thing, chemo is very effective against it. For another, since you had chemo first, when you have the surgery, they should be able to tell how effective the chemo actually was by how small and dead the tumour is (at least that's what I understand from these posts, since my treatment was different).
I had surgery first (left mastectomy), now 4 tx of TC chemo and no rads scheduled. I have 2 more tx left - next Tuesday (May 29th) and June 19th. You can't help but have negative thoughts at times but we are all strong women who are determined to beat this FC and I certainly intend to kick it's butt to the curb.
Happy weekend, ladies!
Doreen
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Lovelyface,
That doctor sounds like a pompous jerk - I can't believe he said you had only so many minutes to speak to him and that he didn't appreciate your calling twice. Good grief! Anyway, I had two very different recommendations from doctors regarding my thyroid nodule. This has been many years ago so my memory is dim, but I had a test with some type of radioactive something where the gland was scanned. Both doctors were pretty sure it was benign from that scan. The doctor I ended up staying with drained fluid from mine three times - it came right back the first two times but after the third, even though the nodule never totally resolved, it became small enough not to really notice. (I had to kind of twist his arm to get him to do it the third time because he didn't think it would work to reduce its size since it had filled back up twice.) He did send the fluid to be tested for malignancy. I have kind of a long, thin neck so you can see my nodule when I swallow. The other doctor wanted to take the whole gland on one side out with the nodule and then put me on replacement thyroid meds. At the time I was horrified at the idea of having to take something every day and I decided not to pursue surgery. That doctor was also a bit of a pompous jerk, too - so I was glad to get away from him altogether. It seems I remember reading that almost 30% of people autopsied for any reason have thyroid nodules also found at the time of autopsy- once I realized how common they were, I was ok with leaving it in there. What does your oncologist say about it?
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Tazzy, Teka, DorMac, OBXK - Get some cake if you feel like it, girls!!!! Yes! Teka, yes I am making myself sick, as after reading so much about thyroid cancer, the chances are very slim. So it is all in my mind, that's all. Still it worries me to have a large nodule which has the possibility to get cancerous.
DorMac - I may not even have described in my prior post, how badly this doctor made me feel today. I actually physically feel sick tonight from my conversation with him. Wow! I cannot believe the way he talked to me. I am looking up endo's under my insurance company's list of docs. It is a difficult time, as from the first of the month, I am getting a new primary care doc as well. time for new docs. I advise every woman out there to never go to bad doctors. never ever put yourself through this experience as you don't deserve to be treated this way, not once, not twice, not ever.
Now back to that cake!!!!!!!
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That's the spirit, Lovelyface! Life's too short to put up with bad service from anybody! And especially your doctors. Yeesh.
Tazzy, I felt the same way when I was done. My onc said it was fairly common once "active" treatment was over; that a lot of patients feel like "Now what?" You feel like you're doing something to fight it while going through treatment, even if you're not especially thrilled with the side effects. It's a little scary to think, "Hope I did the right things, because I'm on my own now." Except for followups, which may or may not include scans and blood tests.
As for radiation vs chemo, my only side effects from the rads were trying to minimize the burning (Don't wait until you start getting red! Moisturize or use aloe vera gel several times a day from the very beginning), and I had horrendous fatigue. I once slept 14 hrs straight, just in time to get up and go back in for another treatment! Just be good to yourself, cut yourself some slack and accept all offers of help.
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I wanna cake!. Preferably dribbling with chocolate and smothered in lovely fresh cream. The sicklier the better.
OBXK - how dare the Wii tell you that you were fat. Bloody cheek. You don't look as if you have an ounce of fat on you from your picture. Chuck the damn thing out, insensitive box.
Titan - you are quite correct BC is serious business. I guess it's just my way of coping. Even the ladies at work yesterday said you have to come back now Annie we haven't laughed in a long time. Nice to know I'm missed though. Yep from now on serious is what I will be. Oh hang on, the 50 shades of grey book is an 'Ooo la la book', you know those ones. My friend told me about it. I daren't show it to my old fellar I would never get out of bed.
Right, Lovelyface did you go to the same doctor as Christina? Both of them sound flaming useless. I think I would do as Christina says and ask my oncologist what she thinks. One of the doctor's at work had a lump on the side of her neck and she went and had the nodule out and when it was tested it was benign. I think I would opt for surgery and then I would know one way or the other. This will place such huge stress on you that you don't need. Kind of him to give you 30 seconds of his time but who the hell would want more from such a useless, pompous sod. I think I would ring him back, tell him I am going to give him 3 minutes of my time, and then spend it telling him exactly what I think of him.
Tazzy - I know how you feel. I often wonder what is there left for TN's once we finish treatment. Does this mean we are cured. Will we ever be cured. Are we in remission then or what?? Do we just carry on as normal until we get another ache or pain. The unknown is quite frightening. But you will be alright I just know it.
I'm on my own for tea tonight and don't know what to have. Food without salt is yuk, food with tomato sauce all over it, sokay but don't feel like it. Might just jump in my car and go and get one of those chocky cakes, yeh. Chocky cakes are serious business Titan! Annie
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Just off to get that chocky cake.
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Good morning ladies! I hope everyone has a lovely holiday weekend with minimal SE! Not on here much this week, with my Dad's Open Heart Surgery and my mom staying with me and going back and forth to ICU, but I check in when I can and always think of everyone!
Next treatment is Tuesday and I hope it goes well and I hope my dad will be out of ICU by then so it will make visiting easier!
Cheers!
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Morning ladies,
Lovely - absolutely unacceptable. Why don't you give me your drs # and I'll give him 30 seconds of my time. Something tells me you would never use some of the words in my vocabulary. Honestly, if he or a family member of his had a history of FC you can bet he'd have all of his answers by now. I'm glad your looking into new doctors and be sure to explain why you left to your old ones. And I'm very sorry that the biospy was inconclusive, but whatever the cause I truly believe its not BC or C of any kind.
OBNX - I have a wii too, maybe I'll wipe the dust off and do some yoga too!
Tazzy - Not sure if I welcomed you before, but Hey! Glad you found this thread but so sorry you have to be here. I did TAC x 6, honestly don't think I could have gotten thru it without these ladies. Radation was a definite breeze after chemo. I'm extremely pale, no skin color at all, thought I would FRY, started on the aloe and Aquaphor the first day and only got a bit red in the one area, nothing like the killer sunburns I've had over the years. As for what to do after treatment? I researched the heck out of vitamins and supplements. Now I take a healthy dose everyday, it makes me feel a bit better like maybe I'm doing something.
CS - hubby and I needed too cute down on the salt too, we switched to ionodized sea salt and he loads everything up with pepper. I think just quitting smoking helped me not need as much salt
My hubby (he's a baker) makes a kick a** chocolate layer cake, it's 2 layers of chocolate cake with a layer of cheese cake thrown in the middle, then in between the layers is Raspbery coulis and the whole thing is covered in chocolate ganauche. Yeah, it's famous in our group of women. Haven't had it in years. Think when he gets up here we'll have a party and I'll have him make it. He's also famous for his butter cake if any of you have ever had that. It's a pastry doughy type base drenced in a buttery sugar topping. It's messy and delicious.
Fifty shades of Grey, what can I say, I'm in PA and he's in FL.
Maybe when I finish the book I'll tab the best parts and send it down to him!On the job front, my very first interview called me yesterday, I have another interview to meet the pres, discuss the job in further detail and be offered the position!! AND my last interview on Wed wants me to come back this Wed for a second interview to meet the VP of Operations blah blah blah!! Very excited!!
Hope everyone has a fantastic weekend. Off to Wii yoga now.
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Onvacation - we must have posted at the same time. Hoping your dad has a speedy recovery!!!
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