Calling all TNs
Comments
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Today is my 2 year cancerversary....2 years since diagnosis with triple neg IBC. Thank you to the wonderful ladies..and men of course, who give support on this board. You all help me stay positive. which is so very important. Feeling blessed.
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Teka, thanks for the card!
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Doing happy dance, Meadow.
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Meadow, Yipeeeee! I'm so happy to hear this, hope your celebrating!
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Yay Meadow! You are an inspiration!0
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Thank you so much ladies, Jan, slv, Bunny
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yay Meadow!!!#
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Meadow= Yeah you!!! I love you!!
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Meadow hip hip hooray!!!! Congratulations & thank you for continuing to share your journey with us.
Have a wonderful week. 😊
Xoxo
G
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Gosh I'd love to know for sure which date is the most "significant" of the "versaries". Is it date of diagnosis? Date of removal/surgery? Date of chemo completion? When they say 5 year survival...which of those dates to they go by? I know in the big scheme of things it probably doesn't matter and we should celebrate them all...I get that. But I'm not sure that even multiple doctors would give you the same answer if you asked them all. Anybody have any insight?
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AL, I've heard different thoughts about this so I'm not even sure! I've heard it's date of diagnosis, date of removal, or date of chemo completion. but then again theres radiation too. So I'm not really helping this discussion but I'm just as confused as you are!
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AL I have been wondering the same thing. I am just 3 weeks post chemo and thankfully I do not need radiation. I am heading to my MO on Friday and this will be one of questions. They had said at one of my appointments I was technically cancer free after my BMX back on January 30th. It would be nice to go by that date instead of my chemo completion of July 27th. I will be sure to ask.
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Thank you so much relocated and SA8! Thank you eileen, love you too!
Al, I never know which is the significant date to recognize in our recovery...I think both the diagnosis date and the end of treatment when I first got the all clear NED news, are dates that hold significance, at least to me. I had been diagnosed 2 years ago in August, then that following January after chemo, then surgery, my path report came back clean. So I was NED before I completed rads which ended in April. So I am seeing this August as a milestone, 2 years since diagnosis, and I will party equally hard (lol, sure!) in Jan as I will then declare, "2 years NED!". Is this how everyone else thinks?
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Just as long as it's NED, it's a happy date!
Keep posting those wonderful updates Meadow! and everyone else, too!
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Shucks... for all we have been thru, I say we celebrate every single date - diagnosis, last chemo, NED, last rad, last surgery, first hair cut post chemo... lol
My onc told me the date to celebrate is diagnosis.0 -
My onc also said date of diagnosis is the correct date for triple negative. Who cares? I say celebrate them all! I'm actually approaching my 5-years since diagnosis. Seems unbelievable to me. Certainly wasn't an easy road, but I'm sure enjoying life and am very thankful for NED! My DH are planning a trip to Bora Bora in June 2016 to celebrate our 30th wedding anniversary (we went for our 20th and have always wanted to go back). It's so nice not to be nervous about scheduling things in the future. To those of you in treatment now, or just beginning treatment, just know things will get back to "normal" again. It may be a new normal, but it will get better. Hugs and lots of love to everyone on this board!
Kathy
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I just have to say that this forum is about the only light out there, the rest of the internet kind of sucks. So many scary places and sites!
I am 46, diagnosed June 2015 TN IBC. I started chemo in July, carbo/taxol to be followed by AC, the surgery and rads. Because it is IBC I will opt for BMX without reconstruction. Blood drawn for genetic testing this week, they say about 4 weeks for results of that.
I really thought that TN IBC was an absolute death sentence until I started reading here, so thank you. I know that there are many many sad stories but the ones that prove that we can LIVE are the ones I need right now. I have a 15 year old daughter and I need to see her to high school graduation, on to college, and beyond. I am blessed with a wonderful DH and a pretty supportive family. I find that reading your stories here (and avoiding looking at charts and statistics or even thinking about the word "prognosis") helps me a lot. Other than that I should block the rest of the internet!
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good for you Notdone yet! I found this site before I started googling: thank God-- I honestly never really did.
Great news all around team NED! I was diagnosed a year ago August: have not had follow up mammo though: wonder why? Saw my MO for last time in June after rads, and he ordered one for my non BC breast.
Honestly, still adjusting to new normal: still grateful for each day, and grateful I have been here to see the boys finish their soph year in college. Only a couple more days though, and they are off again.
Keep the faith, keep fightin the fight
Kath
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Hi all,
I haven't posted in a long time but I've been lurking and have it say this group is one of the only ones that has helped me feel like I may be okay! I promised myself I would post when I got my path results because I have been praying for a PCR for months and was hopeful to get one! My surgeon called this afternoon and told me I achieved a PCR! For those of you who don't remember I am 30 years old with a now 9 month baby girl... I found my lump when she was 4 months old... TNBC with no family history or genes! Plus I am extremely fit and healthy... It was shocking and devastating
I got into a clinical trial and received the Taxol only 12 weeks arm... At 6 weeks my tumor had no change so they let me do two more weeks... Nada
I was so scared I had a chemo resistant tumor! After 8 weeks of taxol they switched me to AC chemo. After the first infusion my tumor shrank to nothing. I never really felt it again but I was still scared the whole time. I kept thinking I should have received Carboplatin and questioned my MO the entire time... She kept telling me it was to toxic for people not stage 3... Everywhere I read said I needed more chemo! I was so freaked out! But it turns out I didn't need it! I didn't even get all the taxol! Sorry for the long post! I just wanted to thank you all for the positive posts and valuable info! Now I end some survivor info! What do we do next? I had a BMX without recon and will start rads in a couple weeks but after that? Does anyone take anything? I already eat very clean and exercise everyday!
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ksteve, wonderful post! thank you. almost 5 yrs out. thats great, a big milestone to reach 5 years.
chiming in on the "cancerversary" dates. Ive heard that you are surviving from the day you are diagnosed so when you say I am a 1 yr, 2 yr 3 yr survivor its from dx date ...but i feel i am cancer free from the date i finished all my treatments, or some of you from the date you heard NED! I am now a 1 yr 9 mo survivor but 1 year 1 month from finishing all my treatments
Had 1 yr post mammo and US about 2 months ago and all clear! next test is MRI next week and hoping for the same of course!
for some fun news, I got accepted to CFR (casting for recovery-fly fishing retreat for BC survivors) for OCt 16-18. It is in a new venue in upstate NY (altmar) at the salmon river near lake ontario. Applied last year for the eastern PA region and did not get picked. Now its just 1 1/2 hrs from my home at the peak of fall foliage for upstate NY! so excited. Have heard great things about this retreat from girls on this site. Check it out for those that have not heard about it. There are many venues in the country.Its free... fun, food, nature, camaraderie, support, gentle exercise and fly fishing of all things! check out castingforrecovery.org. Also there is another retreat that another gal went to on my chemo thread that is for the whole family, especially for families with young children or kids still at home, called little pink houses of hope. She had a great expereince there. Also check out braveheartscamp.org for new yorkers mostly or nearby areas. retreat get-aways in the Adirondacks, LI and poconos, 4xyr in spring, summer and fall.
a warm welcome to newbees. THis is a great group. stick here. You will get lots of good information and support
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Notdoneyet, welcome! I too am IBC. You can do this! Stay positive, it helps so much. I know there are people who get really tired of hearing the "stay positive" thing....sorry guys! The mind and body are so linked, it just helps me I know.
Lilly, thank you for the update and YAY!
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Flaming computers. Hopefully this is now going to run okay. Been back to the computer people twice.
Welcome to all of you new ladies and also the "lurking ones". Keep on battling. Keep off that darn internet with all the recurrence stats and you won't go far wrong. You honestly will get there.
Meadow congratulations on two years but so sorry to read about your sweet Tonka. It really hits us in the heart when we lose an animal because they are so much part of our family. Sending big hugs.
AL I take my cancerversary date as the day I had surgery. All my scans and tests before that was clear of all cancer so once I had surgery I knew it was all gone and hopefully will stay "gone".
Teka thanks for all of your great pics. They make me laugh which is a good thing for us.
LUV hope you are doing ok and have made some decisions that suit you regarding moving house. Hang in there girl, all will fall into place.
Shari how are you doing my friend. Are you at the end of your chemo yet, if not you won't have many more to go will you??
Jan how are things now up your mountain. Read any good books lately.
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Lisaj514 I love that you mentioned Little Pink Houses of Hope. I have not been on one of their retreats but I do know the woman who started it all. I was teaching her son when she was diagnosed with BC and I have seen her dream of helping woman and families living with BC become a reality. She was one of the first people I contacted when I was diagnosed. I look at her and realize we all go through this journey and never know how it will change us. She went from working in an office to running a highly successful charity organization.
I found out today that I am scheduled to have my reconstruction surgery September 18th. Now I need to focus on getting my strength back.
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Hello to everyone on this wonderful thread! A special welcome to the newcomers. You will do well! I finished 6 months of chemo on 7/24/14, 2 months of rads on 9/24/15. This time last year, I had no hair, no big toenails-:), and less energy, but it was all SO doable!! Just returned from a whirlwind too short trip to NYC where I was on TV (was asked a "Who Knew" question by Matt Lauer on the 4th hr of Today show), had amazing meals, saw 2 wonderful Broadway shows, toured Statue of Liberty & Ellis Island with passionate wonderful tour guide and more! Walked tons both days!! Every morning, I am so very thankful for the blessings I have had during this journey. I am a much stronger, more resilient person. I love to exercise, do some part-time rewarding work, and most joyously, play with my 7 darling grandchildren.
To answer the question about anniversary date for TNs. There was a study done by Rebecca Dent that is considered the definitive answer by many oncologists, including mine. This is from the Living Beyond Cancer website.
Question: If TNBC is to recur it is usually in the first 2-3 years and I have heard that at 5 years or beyond there is a better outcome. My question is when do you start to track your anniversary date? The day you were diagnosed, the date after you completed chemotherapy or radiation therapy, or the date you had surgery?Dr. Anders: In the landmark study that defined the peak of recurrence at 3 years for TNBC, this was defined as "from date of diagnosis" in the Clinical Cancer Research article by Rebecca Dent et al. entitled "Triple Negative Breast Cancer: Clinical Features and Patterns of Recurrence."
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Thanks MomMom!
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Cocker, great to hear from you! I finished chemo last wed and am still feeling exhausted! I'm impatient and anxiously await a glimpse of my former self as far as energy. Today I'm having a bone scan due to very low hemoglobin ( which my MO is pretty sure is chemo related), aching thighs and very sore L4-L5. She is just being very proactive and I'm finding comfort in that.
Hope you are well and welcome to all the newbies.
MomMom I wish I had known Dr. Dent was a TN expert as she works at my hospital. I love my MO but I'm hoping Dr. Dent had some imput via tumour board with my treatment. Thank you for clarifying dates!
Hugs and positive thoughts for everyone,
Shari
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Hi all! I haven't read everything since last time I posted. So I'm sorry for missing anything. Shari, I'm glad you finished chemo! Hope you gain some strength back soon! So,we got an offer on the house which I'm sure Jackass will accept. If everything goes thru we will have to find a place to rent that will take three dobermans! Then we will have to build a place of our own. We weren't gonna list it just yet but the realtor my husband was working with kind of forced it because a client wanted to see it today so jackass said ok! I can't tell you how mad I am right now. Yesterday I found out my Lymphadema is slightly worse, then this morning I took our female dobie to NC State to a dermatologist for a foot/allergy issue and they said that wouldn't be too hard to treat but she has casts in her urine which could indicate early kidney disease, and now this crap with the house!! My head is spinning!! I know this is nothing compared to what most are going thru who have just been diagnosed and/or taking chemo, but I was just giving you all an update. I really wish he would at least wait until my five year mark from diagnosis because my fear is being in a rental which wouldn't be our home and I get mets or something!! Ugh!!
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Hi all. Quick post before I go to bed. Three years today since my diagnosis. Seems like a lot longer. Hope the beast is gone.
Best wishes to all in treatment. Things are different from before, but continue to improve.
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Not sure why my surgeries are no longer showing up in my signature.They're in my profile for public. BMX w implants February 2013/exchange November 2013
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Oh Luv, so sorry your jack got his way! You deserve much more respect than it appears you are getting. Sending hugs and a warm cup of soothing tea.
Cocker, My mountain burned itself out, but other mountains and even flat lands near here are seriously burning. Smoke is thick. As for books, yes I'm reading. Last one was the new Dorthea Benton Frank (light weight) novel, the title of which I can't think of this moment. I get large print books from the library system. Just picked up "Mrs. Sinclair's Suitcase" a novel based during WWII in England.
I was in Los Angeles (260 miles south) Wednesday when we were rear-ended by a young driver. We were in our brand new car and I got a good bit of whiplash. We were on our way to my eye appt at the hospital so that doc sent me to her doc to get checked out. Really messed up the car and me, too.
Welcome to the new sisters and good wishes for a wonderful weekend to everyone. Jan
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