Calling all TNs
Comments
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Sneaky stuff this FBC!
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Yes, I have heard you are never cured but treatable!
I have met so many people with TN in my area and they are all doing great. And there is so much research being done now on TNBC which give me hope.
My onc also told me if it doesn't reoccur within three years then the chances of it reoccurring are the same or even less than someone with positive BC.
These are all just statistics. You just have to try and put that fear in a tiny little box somewhere! I'm working on that but right now my fear is busting out of a refrigerator box!0 -
OBXK and all,
The way I look at it (IMO) it is a remission when all evidence is gone no matter how it was treated. To me it is like diabetes, you are never cured of diabetes (some would argue). Even if on no medications at all and I live healthy with food and exercise I still have diabetes. As with any disease the goal is to remain ever vigilant, get all tests done as recommended, and take care of our health.
Hang tough, Sheryl
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I agree with SherylB and OBXK concerning remission. When I went for my scan a month or two back everything was clear and there was no cancer at all but what I want to know now is, is it the same two months down the track, is there still no cancer. Also I wonder why did I get it in the first place. I was 65 at the time. Why didn't I get it earlier. What did I eat, drink, do, what made the cells change at 65 and not earlier. What if I do one of these things again will it come back, when will it come back. Why was it receptor negative and not positive, what made it take the negative path for me. I was never promised a cure probably because of the TN although my doc's were hoping for one but if we are cured why do some people pass on, why do some recur. Who the heck can answer my questions nobody I suppose, its all just a nerve racking, horrible wait and see for me. My diet has never changed, I have always been a plain eater. Very rarely got ill may be a cold once a year but nil else. Sure I smoke but I have done that since my mum was dying at 16 years of age so why hit me with cancer now. I don't overly exercise but I never have done. I have never drunk alcohol so it couldn't have been that. What the hell is in the air, is it that. I hate all the why's and when's. I appear happy and carefree as I genuinly was before I got BC but I'm not now, I'm full of doubt all the time and it drives me crazy just waiting and wondering. Is this just our fate and we will go when its our time, who the hell knows. Remission or cure whichever it is its the waiting that kills for me.
Well now thats all out of my mind may be I will feel better.
Titan can you hear me talking to you again. I REFUSE to get OLD. I will live until I am 90. 91 is old to me so I will make it 90. I don't look in the mirror now to see if I am getting old unless I have my eyes shut!! One day at work two pot head chaps came in and wanted a repeat script for methadone. The Doc refused to give them anymore and told me to tell them which I did. Because they were unhappy about this one of them called me an F...... old bag. I said never mind the swearing don't you call me an old bag, suddenly everyone in the surgery burst out laughing. Seriously I may be older in age now but not in spirit unless its a day of my "what if and when's" then I feel positively ancient.
Big warm hugs to you all ladies from little ole NZ.
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![~ @[350927611610292:274:Have you had your daily dose of smiles today?] ~](http://sphotos-c.ak.fbcdn.net/hphotos-ak-prn1/s480x480/26008_479660865403632_50013200_n.jpg)
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Love the kitty picture/saying! Question about surgery - since I'm doing neo-adjuntive treatment, I haven't had surgery yet, but want to start getting an education on all the options. I pretty much know that I'm going to decide to have BMX (even if the cancer is gone and only a lumpectomy will suffice). I've always wanted a tummy tuck and new boobs, so I'm trying to look at this positively and with excitement. Any advice on what you've seen and/or which board/websites are good to get on? Thanks!!!
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Lauren..you can check out the surgery 2013 and see what they are saying about their surgeries. I also did chemo first and am having a BMX with reconstruction next week. My doctors and I cannot find my tumor (by touch) anymore. So the chemo clearly worked. I just hope they don't find any positive nodes. I also could have a lumpectomy but for many reasons I am going with a BMX. My plastic surgeon said he prefers to do the expanders with saline instead of a tummy tuck. He said that having a tummy tuck takes away your abdominal muscles and causes problems down the road. S, I don't know...my sister had a tummy tuck years ago and doesn't have problems other than she gained a lot of weight so now she has two tummies because of the scar. When you meet with your plastic surgeon, he can give tell you about all the options.
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Annie: ((hugs)) sounds like you need them. I dont think it is anything we do or dont do to get cancer.... we were just the unlucky bastards who did. My friend is a triathalon competitor and got bc... other friends, drink, smoke and are as healthy as anything.
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Cocker you wrote my thoughts exactly. No matter how far out I get I still think about CANCER. I am not as consumed by it as I was in the beginning. I know life is going to end for me one day, but not now I have little ones, and like you Cocker I want to live until 80 though!!
Every little ache and pain sends my mind wondering to the dark side. It never gets totally easier, but you can find happiness through the aches, pains and scares....
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Hello ladies, just checking in on you all again... I am having my tissue expander surgery on Monday morning. And then out of work for 3 weeks to recover. I'm a bit anxious, which I shouldn't be after the million surgeries I've already had for this damn cancer. But I worry that when they open me up they'll find even more cancer, again. My nightmares have increased drastically too, and I can't get a therapist appt until a week AFTER my surgery. Yeah, I need to relax.
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minxie, damn cancer always at us in some way. i dont think they will find more cancer, when is the last scans, bloods you had? can you get to local Dr and get some anti-anxiety meds to calm you down.
deep breaths and ((hugs))
xx
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CockerSpaniel:
Here is some information regarding the gene mutations of cancer. It is not caused by one thing, but a factor of many over a period of time (they suspect). To understand the full concept, you have to click on each box you will see the items that can cause that. But one factor is probably not enough -- so you can see by each picture it takes several things over a course of time - supposedly.'
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My onc told me that ANY type of breast cancer is not curable...but...big but here...we can all be in remission for a very long time..like until we die of old age or something else....come on ladies..you all know someone very old that had bc many years ago.....most of us do survive...but not all and that is what sucks...we need a cure now....and I refuse to believe that it is anything that I did...not going to go there....we've just got to keep on keeping on.....and if eating healthy and taking vitamins and excerising helps then heck ya...I love to run..just love it..not sure if it keeps the cancer at bay..time will tell but I am addicted to it now and I know it does me good in many other ways besides preventing BC....
The good thing is..that tn is the HOT research going on right now...I love it....it's all good...and hopefully soon our daughter's won't have to worry about it like we do if they are diagnosed....
I hear your voice Cocker...I hear you well...love you!
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Flimsical, I was not as young, 46, but no factors and in great health, or so I thought!! I waited until after the biopsy to tell my mom. I told my oldest brother first who was very supportive and went with me when I told my mom. She was very upset, but also very supportive. She went to every chemo with me, even when I said I was fine by myself. We talked and played games together to pass the time and she would make sure I got home safely then head home herself. She was 77 at the time and lives an hour and a half away. We have always been close, and going to chemo was her way of supporting me. It helped her as much as it helped me. I am so glad she was able to be there for me and I for her.
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Lauren- regarding forums for reconstruction, I found the picture forum especially helpful. The reconstruction thread is loaded with personal stories and photo journals of all types of reconstruction. Due to the intimate and private nature of the journies shared access is granted by the site administrator. To gain access, send a private message to nowheregirl and ask for access to the picture forum. It may take a little while before you get the instructions to access it. The site administrator will follow your posts on here to evaluate your willingness to share and make sure and protect the safety and privacy of the women who have shared their stories.
I have had both permanent saline implant reconstruction and natural tissue reconstruction. My implants failed after time and I opted to go with muscle sparing DIEP reconstruction using belly fat to avoid the need of replacing implants down the road again. I found the DIEP 2012 and the NOLA in September threads helpful to guide me as I made my choice for that type. You are spot on to become educated on the different types so you can make the best decision for you. It really is a personal decision and ultimately you are the only one that has to live with your choice. Best wishes to you.
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I know of a few ladies who are 30+ year survivors, and 1 of them is a TNBC survivor!
My approach has been different than some other approaches mentioned on here.
While I certainly don't 'blame myself or think I caused it' per say, I have completely eliminated any items that I have found to warrant suspicion. For instance, I used to drink a lot of coffee, diet coke, never exercised, cleaned a lot with strong chemicals, and my vitamin D3 was extremely low, a 12 (found out after my bc diagnosis). Since my dx, I have cut out 100% diet coke and coffee and replaced with organic green tea and water. I have traded in the oreos for steamed veggies. I have given up the 2 hours of nice couch time, and do my 90 minutes each day at the gym. While I have not particularly enjoyed all the changes, I do feel amazingly well, and I feel extremely healthy and I love my new body - I lost 22 pounds!
I hear people say they "aren't changing anything, as that means they are letting cancer control them", but I again have a different mindset. I feel if I were to not change anything, that I would be "naive to how I would be missing opportunities to remain healthy for a long time."
I don't know what caused my cancer, but I feel I have to make a change to what I was doing before. I have always felt about things in life, that, if something is not working, you must change some process. I feel the same way about my environment and health. For some reason my body was not able to prevent me from getting cancer. If I can try to isolate some potential items that negatively influenced my health, than I will have a better opportunity to succeed.
In the moment of writing this, I can say that today I have had a particularly challenging day. I'm just 1 year out, and have fears like all of us do. Some days the fears are stronger, some days they are almost not there. But today they are here and real. I think as we get further out, we are able to stand stronger, and perhaps make bigger assumptions.
But tonight as I write this, it is just to say at 1 year out things are challenging. I strongly advocate for each person to remain vigilante. Be the best that you can be, allow yourself to have weak moments without feeling guilty, and try to improve any part of your lifestyle that you can. Some changes can or may make a difference.
I am wishing all of my bc sisters on here much love and hugs!
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Inspired...Very well said. After my Dx in August, I made changes too driving my husband nuts. Then I fell off the wagon at Thanksgiving and have been trying to get back on ever since. I do have my BMX surgery next week and am slowly gearing up to take charge of my life. Reading your post is just what I need to hear so I thank you for that.
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exactly what i feel, expressed well inspiredbyD.
x
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Inspired you wrote a great post. I won't blame myself, what's the point, but it does leave me wondering at times not why me but why now. I have always been a well person (not fit, wont go too far lol) but I have kept pretty well through my life so maybe its God's way of saying Annie don't get too complacent cause you will be up here with me one day (at least I hope so cause the other option is not so great!). Maybe it's now a gentle decline in my good health (despite the chemo) and I won't get run over by a bus which is quite good really cause as OBXK says they are unreliable lol. I don't think this for all of you as well, just my thoughts for me that pop into my head every now and again. I want to laugh with my family, friends and you wonderful ladies on here for the rest of my days and just hope that there are many more days to come for me yet as I just do not want to leave this wonderful world.
God am I morbid or what. Funny but these thoughts never went through my head until BC. Sorry for my ramblings, believe me most of me is sane, most of the time !!, but for some reason they come every now and again now.
Have a good laugh today until your tummy hurts and keep away from all the side effects of chemo if you can. Love to all. Annie
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Labour Pains A married couple went to he hospital to have their baby delivered. Upon their arrival, the doctor said he had invented a new machine that would transfer a portion of the mother's labour pain to the father.
He asked if they were willing to try it out. They were both very much in favour of it. The doctor set the pain transfer dial to 10% for starters, explaining that even 10% was probably more pain than the father had ever experienced before.
But as the labour progressed, the husband felt fine and asked the doctor to go ahead and bump it up a notch. The doctor then adjusted the machine to 20% pain transfer. The husband was still feeling fine.
The doctor checked the husband's blood pressure and was amazed at how well he was doing. At this point they decided to try for 50%.
The husband continued to feel quite well. Since it was obviously helping out his wife considerably, the husband encouraged the doctor to transfer ALL the pain to him.
The wife delivered a healthy baby with virtually no pain.
She and her husband were ecstatic.
When they got home, the mailman was lying dead on their porch.0 -
thx cocker good one!
ladies have a look at this...just the voice makes me smile!
its a great day for me to whoop somebodies ass!
video>> http://www.facebook.com/photo.php?v=297050401057&set=vb.508431057&type=2&theater
xx
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Thanks for the morning laugh, liv!
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Anita, thanks so much. I will look into what you said. I'm also going to start emailing my PS, since he said I could, and is a friend of a friend with one of the best reputations in S. Florida (whew). I want to find the surgery that is the closest to perfect, and when I say perfect I don't mean natural (since natural from some pictures I've seen are scary). I want to be perky and pleasing again (like my 20 year old daughter - yeah right). . . I can only dream. Any way, I will look into the procedure that gives me the best results to be normal again. thanks again!!!!
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Titan, quite right. Technically speaking, breast cancer (ALL types, not just TN) is one of those cancers that cannot be cured in an absolute way. When docs talk about "cure," what they really mean is "successful treatment and no evidence of disease." However, because BC is invasive, there is always a chance (and thankfully for most, a remote chance) that it will recur...
That said, 3 years out is a big milestone for TN and 5-6 years even more so. I don't think of myself as cured or in remission. When people ask, I am thankful to report I am doing well.
Have a great day, ladies.
PS The TN book that someone asked about earlier is no doubt a good read. I have always followed the author's blog and have found it very helpful.
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Need help ladies. My DH and DD will never read the triple negative book that s/b delivered tomorrow. He doesn't get it. He said to me earlier today after trying to explain to him numerous times about TNC - why don't they just cut it out and then you don't have it any longer? Do any of you have an article that you would recommend they read? The ones I saw sounded like doom and gloom. I want the fact, just the facts. Haha. Thanks!
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Genetic Testing question: I heard back from Utah today that they are running the BRCA tests - there are three different things they look for - $575 - Aetna approved. However, Aetna did not approve the other part of the test that is $3,000 due to my age and no family history. I'm thinking I don't really need it. My doctor is on vacation, and the nurse said she was going to look into ways to get grants, etc. - Anyone have any advice? I'm all ears!
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My third question - wow, I guess my chemo head is defogging. Does anyone go on the Triple Negative Foundation site. It's very similar to this. It looks like there are daily updates on anything new, etc. -- I don't want to do overkills, but I wanted opinions on anyone who is familiar with both and knows the differences. thanks again ladies.
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Lauren,
How about this synopsis. Most tumors respond to hormones, ER, PR, and Her/2. So the treatment of giving chemo that blocks the hormones is chosesn. Even if they cut it out there could be microscopic cells that traveled through the blood stream and wound up in other organs. Regular cells don't go outside the organ they are making up, (ie. liver cells stay in liver and so on) but cancer cells act differently and they can travel anywhere in the body. So chemo which treats/attacks the whole body can kill any cells that got out.
Now TN has no hormones so there is no specific treatment of chemo to block the cancer cells. So doctors decide which chemo is the most aggressive for the patient based on all the other markers, such as grade, stage, aggressiveness (Ki-67). They then give the chemo to catch those sneaky cancer cells that may have gone elsewhere. Then if you didn't have a mastectomy but had a lumpectomy (breast sparing surgery) radiation will be done to try and get any other sneaky cells that may be out there.
Be sure to mention that with aggressive treatment if a person can make it 5 years with no recurrence then the chances of getting it back, go down for TN more so than other cancers. May not want to say this as then it becomes a watch and wait game for the calendar to pass and life may get forgotten in the mean time.
This is what I have figured out based on my reading that kinda simplifies it in a nutshell for me. I may not even be correct but think I am on target.
Hang tough, Sheryl
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Lauren, I have been to the TNFoundation, Susan G Komen, Scott Hamilton and others, but have found this to be the most active and with a wide wealth of experience and knowledge, as well as support. So I pretty much stay here and read all the forums.
Sheryl
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Lauren...first of all..stay with the websites like this and the ones you mentioned above...the media and some websites are nothing but gloom and doom about tnbc...stick with the websites that post studies and have facts..not freaking horror stories...you can scare yourself ***less...It is true..that tn..if it is going to reoccur is usually in the first few years after treatment...then our chances of reocurrence DOES go down,..way down...of course we have to realize that any one of us could be in that lower percentage......but it really does get easier after time...right now I'm going for that 4 year mark...(3/20)..then pushing for that 4 1/2 year...then the big 5 year....yeah..still very vigilant...yeah..still freaking about a pain if I have one...but....I dunno..I feel really good right now....things are pretty much back to normal.....if there is such a thing....time really does help....when you are going through treatments everything is about YOU..and it should be....after treatment is over and time has passed..it's like..oh..it's not about ME anymore...I can start caring about other things now....weird transition..but it does happen....good luck to you and all the ladies going through treatments right now...it is all about YOU..and don't forget that....
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