Calling all TNs
Comments
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Suze 35 ... I have heard the same...the chart I posted looks like 12-24 months is a lot of reoccurence but these are charts not us!
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thanks for the study. I agree these graphs are not us.
keep in mind that half of the TNs in the study did not get chemotherapy.
more TNs were node positive and later stage (stage III) than the non TN group so the comparison is not quite fair.
the pattern of early recurrence in the first 3 years has been shown fairly consistently, though.
bca1babe
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thanks for the charts - I had seen those but can't follow them... Acoording to them the chances of being recurrence free are 1.0 at the start and then go down - so isn't 1.0 the optimum? Why would your chances of being ok go DOWN as the years progress?
What I'm wondering in particular is if there's a big spike UP at three years? Or is it steady and drops at 3? The charts seems to drop off until they flatline at a certain point but it's not at three years.
Guess I'm waiting for three years to give myself reassurance - but I will be so upset if I get there and WHAM...
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I read the whole thing, and what I got out of it is that between 2-3 years we peak and stay the same and then it rapidly delines.
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so is 2-3 years after the most dangerous time period? The surgery chart seems to show 1 yr out after surgery theie is a big spike and then after that it wavers up and down a bit until it significantly declines after 4... Wish I took more math in college!
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My understanding was the most dangerous time was 12-24 months when it peaks, then it slowly declines to 36 months, where it levels out until 5 years, when another decline happens. Ugh, there just isn't any exact science, that's for sure! Each cancer is different - mine appears to be very aggressive basal type, so my MO is pretty darn happy I'm still clear and said she'd breathe a touch easier if I make it 12 months from my last chemo. Basically, she thinks mine will come back quick if it is going to.
Others have TN that isn't quite as aggressive (I know, sounds crazy!), and it can take 1-2 years for it to come back. I think this is why that 12-24 month period is so high.
I have no idea when I can start counting to be honest. My nodes are now back to normal (yay!), so I guess I'll start now? I'd really like to start with my surgery date, but I still had cancer after that, so I can't...Ah well. I live scan to scan anyway
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I agree with Suze-the first 2 years are the most dangerous, between 2-3 there isn't much difference and then after 3 it declines and after 5 it declines even more.
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What suze said is what I have always understood and is what that link says: most TN recurrences occur before the 3 year. Up to 5 years the risk is still there but is declining. From 5 to 8 eight years there is a minimal risk, then after 8 years you can likely conside yourself cured. That is along time to worry though!!
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Also keep in mind that these women were diagnosed in 1987 and followed for 8 yrs. they studied 1601 women, 0f which ONLY 180 were triple negative. So to me, this is a very small sampling, from women diagnosed over 20 years ago.
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Husker - that is a GREAT point, one I think we often lose sight of in our concerns. My doctor still reminds me that even the most up-to-date data is still 5 years old, and that statistics are better than represented in her opinion.
My RO also plays up the "every cancer is different" angle. He has said he's seen some very aggressive cancers just like to sit, content to remain localized, and then some very innocent looking grade 1 tumors head out for greener pastures. His words
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If the dangerous time is 12-24 months after diagnosis, then I am starting that phase right now. Scary.
The 8 year thing is good news, triple negative very rarely recurs after that, whereas other types of breast cancer do recur after 8 or 10 years. I agree Lisa, 8 years is a long time to worry.
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I am starting that phase too Lynn and it is scary. I feel myself going back to my prechemo craziness over every ache and pain. I have not discussed recurrences time periods with my onco, but know how very aggressive mine was, I am think the next 6 to 12 months are probably my highest risk time. Ugh.
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I didn't mean to alarm anyone posting the study. It is an older study but about all you can find doing research. My good friend is an oncology scientist at the Whitehead Institute at MIT. I took her with me to the radiation oncologist and she has lost a sister to colon cancer, so she tries very hard to interpret informaton very carefully. She found the study appeared to indicate a reoccurence peaking between 12-24 months but reminded me also that the research was old, chemo may have been different, radiation was likey similar, but the most important thing she keeps telling me is that I am not a number but an individual.
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Painting: I am glad you posted the study. I have read many studies, and I know the first 3 years are high risk for us TN's. It is scary, but the tradeoff is, that after that we can breathe a little easier.
Lisa, well at least all of us can go through this phase together. I know what you mean about every ache and pain . . . I guess that's the new normal for us. I'm trying to exercise, eat right, take my vitamin D and, I try to eat a lot of blueberries! What more can we do?
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Hello from Blowing Rock Equestrian Center, where I just discovered I had Wi-Fi at the office.
Thank God for carriage brakes. This place has more hills and switch backs than Acadia or Rockefeller Preserve. Horses are doing great, but I sure don't want to meet another carriage going the opposite way. Rocky, too.... carriage almost jack-knifed going down a stony "construction" area into a sheer drop (where the other horse was killed yesterday). Holy crap... gonna take tomorrow off to give the horses and my heart a break. I think I'm having fun....
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In regard to this study, when did the taxane drugs start to be used?
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Excellent question Christine. I was wondering the same thing earlier.
I don't think the study is bad or shocking. It basically says TN recur earlier, which is expected given the lack of targeted therapies.0 -
Heidi: Thank you for sharing your picture-I am so sorry to hear a horse was killed yesterday! Have fun but please be careful--It looks gorgeous!
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Great Pic Heidi...I am glad that you think you are having fun..!!
Reocurrence...like most people say it is a crap shoot..but from the studies it certainly seems that our risks goes down after 3 years and the positives stay the same or go up (isn't it 3 years after surgery??)...
Freak out...yes..we are going to do that anyway...but try to put the thoughts away for awhile if you can......I have my calendar marked until year 3..which will be 3/20/12....If I make it that far I'm going to do some heavy partying...
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Huskerkkc - I live 5 min from a hospital and cancer center but I chose to drive 45 minutes away for my treatment. Feeling good and trusting your medical team is a HUGE deal. Sounds like you have a good support system as well! That's so great.
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Titan I'll party with ya! My 3 yr will be 9/22/12 !
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Hey...Please put me on the party list for 2012!!!
Teka-Can't remember if I made any resolutions but I have made some attitude improvements. I read 2 good books recently. "Dancing in Limbo" has helped me get my fear of recurrence in check and reminded me to appreciate and enjoy what life has to offer. "Forgive for Good" has helped me with my past and has helped me to learn how to let go of the wrongs that have been done to me. And to feel better about moving forward.
Have a great day,gals. I am in FL visiting my Navyson and his family. I brought my parents on this trip. We have 4 generations together. Hoping to see my 13 month old grandson experience swimming in the pool for the first time!!! I feel good, happy and so very grateful.
Love to all
Navy
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TEKA - I'm sure I made a resolution.......hhmmmm....maybe I should have wrote that down lol!!! I couldn't even tell ya what it was!!!!! Wow you lost alot of weight! I HAVE to do something about my weight but I can't seem to mentally want to do it. Maybe I'll try hypnosis like on doctor OZ hahaha!
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Teka - I'm working on one of my resolutions as I type - 5-grain oatmeal with soy milk, organic wild blueberries, and cranberries. Yum! Later on I plan to take a long walk up a steep hill - as opposed to a short bridge
.My goal wasn't to lose weight - I'm in the right BMI for my height - but to really improve my eating/exercise habits. I'm doing meh - 50-75% of the time, I do the right thing. So my mid-year resolution, keep it up to 75% of the time.
NavyMom - I'm going to check out those books. I really need to work on my forgiveness, as I still hold a lot of anger for past transgressions. And I could always use help on dealing with fear of recurrence!
Heidi - awesome picture!!! It looks like something out of the 19th century
. Stay safe and enjoy the rest of your trip.0 -
Teka: Congratulations on the weight loss. I lost 30 during chemo but now I am back up 10. My dr. thinks I should be 5 pounds heavier then my idea of my ideal weight but I like how I look in clothes better at 10 pounds less. I don't do resolutions--I just try to stay focused on the now and how I can improve my odds.
Suze: I think you and I have the same approach!
Titan: I'm jealous of your 3 year mark. My 3 year isn't until March 2013.
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Hi TiffanyF4 just read your post. My oncologist ordered a PET scan before I started chemo, one after my sixth dose, mid treatment since I had twelve and now one at the end of my chemo. This is to check and see if chemo is working and cancer is not spreading to other organs.
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Tropikube1- I had a pet scan before my mastectomy but because I didn't have any lymph node involvement or any other organs I guess that's why.
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TiffannyF4 that might be why, I do have lymph node involvement, not sure how many. Have not had surgery yet, waiting till August, September. I've to wait 50-60 days post last chemo. Also would like to put some fat in my body
have lost 56 pounds since begining of chemo..may need them for reconstruction. 0 -
Sorry deleted my post...I said I had lost 56 pounds... not so, since begining of chemo have lost 34 pounds. Anyways you might be right re: lymph nodes, I do have lymph nodes involvement. I dont know how many yet, havent had surgery. Have to wait 50-60 days after my last chemo.
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I didn't make any resolutions (found my lump on New Year's Eve-happy new year to me) but did lose 18 pounds since January, mostly due to stress and chemo. Five pounds of that seem to come and go almost weekly but would like to lose more. However, rads start soon so have to be careful about weight loss. I am trying to walk daily or do the Wii. I am overweight anyway, so activity has been important and a big part of preventing recurrance. It also helps with sleeping and stress levels, and about the easiest thing to do. Just gotta get up and do it!
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