Calling all TNs

Curlyq1974

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.

KSteve

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

Mamiya

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!

Tobycc

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

LillieRose

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!

Lisaj514

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

Meadow

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!

Cocker_Spaniel

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.

Msmath

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.

MomMom

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."

ALHusband

Thanks MomMom!

slv58

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

Luvmydobies

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!!

placid44

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.

placid44

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

JAN69

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

shorfi

Hi ladies...everything went well with my revision surgery. He decided to not exchange the left implant, but instead did a little bit of fat grafting to fill a pivot, then he did a breast lift. I love my new girls now. They are symmetrical. He also did some liposuction and I no longer feel that bread loaf under my arm pit. I am still swollen but he did a great job.

Now if only the few people that I told would stop making me feel like I'm crazy just because I had this surgery. They seem to think I love being cut on. But this is enough for now. I'm thinking about getting the other side done somewhere down the road, and the only person who will know is my sweet husband and you ladies. You ladies get it.

So that is my update. Went out yesterday and had a nice haircut and color. Feeling fabulous

Also edited to add this is the first time that I have felt this good in years🎊💥🎈. So afraid to be happy though.

shorfi

Shari...so happy to hear you are done with the treatments

Cocker_Spaniel

LUV sorry you are still having housing problems. In NZ you would be extremely lucky to find a rental that would take three dogs. It's even very hard to get a rental with one or two dogs here. In NZ when you list a house for sale you have to have both signatures on the listing if the house is in both names. It would be against the law if my hubby was to sell our house without my signature and the sale wouldn't go through. Have you got a photo of your home. Unless I have missed something along the way but how come you have lymphoedema when you didn't have cancer in your nodes. I have lymphoedema but I had cancer in four nodes so they took all of them out. Your body can cope with the loss of four nodes but as I had eleven out it made me a good candidate to get lymphoedema. Hope you get this issue resolved soon as its not good to be so stressed all of the time.

Jan it must be a nightmare with all the mountains near you burning. I can remember when one of our mountains (Mount Ruapehu) here in Taupo (we have three) blew her top and we had ash in the air for weeks. All the people that worked in the ski fields lost their jobs because there was no snow so we all dread it happening again. And your lovely brand new car. So sorry you got whiplash that is very painful. The other party will have to pay for the new car won't they. Choose a different colour this time. Bet you said a few &(*(&(.

Shorfi take no notice to what other people say. It is your body and if you are pleased with the results then that is all that matters. In this world with so much strife you have to do what makes you happy and nobody else. So glad you love your new perky girls and glad you are so happy.

Shari great news with the chemo being over. Now to get back to normal and out in that garden when you feel up to it. Do you have to have any further scans.

And Mike, my doctor is sending me for an HbAlc????? Sure hope I don't have to have that Metformin.

Another two weeks and we will be in spring. Just can't wait. It's been a very cold winter.

slv58

Shorfi, I'm so happy that your feeling good and enjoying the results of your  surgery! You deserve it and no one knows what you've been through unless they have been there- ignore them, I think we should all grab what makes us happy and find joy in that!

Jan, I'm so sorry you got whiplash, I hope your not in too much pain. I can't imagine what it's like, we use our necks constantly with every subtlemovemen. Please rest up and take care of yourself. 

Cocker, I'm very happy that tx is over but am feeling a bit of the 'abandoned' feeling we all go through transitioning from active treatment to trying to find the new normal. I went through it the first time so I know that time will heal, just a little harder bring a recurrence. I had a bone scan done on Fri as I've had a lot of pain in lower back- x Ray shows moderate degenerate disease and I'm pretty sure my MO is just bring very proactive in ordering a scan. half way through the scan, the tech asked me if I have groin pain. This has me wondering if he saw something. I'll have to wait till the 2nd to get results. I've learned to not borrow trouble so I'm not going to worry about it but have to wonder what would show in the groin area? 

Luv, I'm sorry your having to deal with all this real estate issues now. I hope your not stressing too much although if my DH suggested we move I'd probably freak out. My home is my safe place, my place of healing and rest- try to take that away from me and I'm sure the she wolf would emerge! 

Placid- Congrats on 3 years!!! Yahoo, stay positive and thank you for sharing such encouraging news! 

I hope everyone is having a nice weekend, it's beautiful here at 23 degrees and sunny! 

Shari

Luvmydobies

Placid, congrats on the three years!

Cocker, we did both have to sign the seller contract and my husband got upset when I expressed my feelings about wanting to at least wait until I hopefully hit the 5 year mark before selling. He said that's not living, you're cured and we have to move on! He also said he wasn't happy here and isn't staying for me to be close to a volunteer "job", doctors, etc. I'll still be able to see my same doctors but the area he wants to move to is about two hours away. It's also almost three hours from the Doberman rescue. But I guess it's ok we move just so he can grow a bigger garden and have fruit trees?!! The last who's buying our house wants to close on September 28th. He's gonna be gone a lot next month so we have very limited time to find a house or place to rent while we build a house. It's almost impossible to rent because of our dogs. Regarding the Lymphadema, you don't even have to have cancer to get that. Anything that disrupts the lymph system can cause it, such as trauma or surgery. I only had two nodes removed. I don't have it in my arm but I have truncal lymphedema. Compression and MLD doesn't help much either. So it's a bit more challenging. So far it's mild, BUT my biggest fear is infection because I'm scared of antibiotics because of the dang C Diff history!

slv58

Luv, I was told the same thing at my hospital clinic on lymphedema, they said you don't even need to have nodes taken out, that surgery or radiation can cause it and every woman who has been treated for breast cancer is at risk. I have it mildly in my arm and should wear my sleeve/gauntlet more but find it very hot in the summer. I did have truncal prior to mx and found the compression bra helped. For some reason, since mx I don't have the uncomfortable swelling. 

I'm happy you can still see your medical team, but sorry your now forced to find somewhere to live in such a rush. Seems very selfish, I'm sorry. Hugs.

Luvmydobies

Shari I know what you mean about not liking to wear the compression garments due to the heat BUT I would wear them regularly if I were you. When I was first diagnosed with lymphedema she said I didn't have to wear them all the time and could either wear them at night or during the day. Apparently I didn't wear them enough, especially when it was hot or if I wasn't doing much on some days. I also didn't to the MLD exercises often enough. So, I am kicking myself now. I don't want to sound like a mother hen but I'd wear the stuff if I were you.

Regarding the move, I'm most upset that I won't get to go to the rescue anymore because it's such a big stress reliever. Also where we are moving to isn't really close to anything that may be fun for me to do. It's way out in the country. I'm sure a lot of folks will be like why can't you do something else besides the Doberman rescue. Well, the rescue is just special to me since Dobermans are my passion, plus I am close to the other volunteers and love being with them. It's like my sanctuary! Yes, it is only volunteer work but in my opinion it would be equivalent to me moving my husband and pulling him away from his job that he's passionate about! I especially don't know what I will do when he is traveling, which he does A LOT!!!

Cocker_Spaniel

LUV I would find it very hard to be pulled away from somewhere where I was happy and contented to live in the country with nothing familiar around me. In the country here houses are miles apart and it may be harder for you to make friends or to drive anywhere easily. I enjoy meeting my friends for lunch or brunch and would resent my husband if he took all that away from me just on a discontented whim. I love to laugh and my friends make me laugh. If your man is away a lot it would be even harder for you. Trouble is he may want to plant trees but doesn't seem to want to stay long enough in one place to see them grow. Don't put your volunteer work down. Volunteers are needed all over and its a testament of your character that you do this for those beautiful animals. That is to be commended as they need you and others that do it so lovingly and willingly. Perhaps its time to put your foot down and explain that you need a certain way to live as well. Marriage is always a compromise but it must be from both sides not just one.

Luvmydobies

Cocker, the place we looked yesterday did have some neighbors close by at least but it's just so far away from my volunteer work. In my husband's eyes just volunteering isn't good enough for us to stay where we are. You're exactly right about him not being in one place long enough to grow everything he wants. There's a good chance he could get his current boss' position when he moves on and that job would be back in TX! That's another reason I don't want to move now because he changes jobs every two to three years. It's ridiculous. He just likes change and he's tired of where we are now because our yard, plants, garden, etc is already established and he's bored! That's all it boils down to. Today we looked at places closer to the Doberman rescue but of course he found something wrong with all of those! He has his mind set on an area and that's what he's sticking to! He acts like he's looking in an area close for me but he will always go where he wants. He does have lots of good qualities and I do love him so I don't want to just give up on our marriage. I just wish he knew more about Triple Negative and know I'm not out of the woods yet and I need my best therapy right now which is my volunteer work! My Oncologist and former therapist both told him how important it is for me to remain as stress free as possible but he says he knows me best and knows what I need. But when I tell him what I want to do he gets upset. He grew up with his mom giving him everything he wanted and telling him how perfect he is and it has carried over to our marriage so when he doesn't get what he wants he can't handle it. He was great during treatment and I don't ever want to see the fear and hurt I saw in his eyes ever again. I just wish he was more understanding of my feelings after treatment. You all know that treatment may be over but the fight and fears are never over. Anyway thanks for listening and being here for me! XOXO!!

Cocker_Spaniel

LUV I do hope everything turns out ok for you. It must be very frustrating trying to get him to see your point of view but hopefully he will wake up and change course. Things will happen as they are meant to. Sending big warm hugs and hopefully a resolution to your problem. xx

Stupidboob

Hey Gang, I am posting this for your advice. I am sorry I have not been around, but I had to have a break from all the sadness and etc. Mainly because I can't keep up. I am posting this as a mass, but if you could would you please respond in PM. I always miss stuff. Just take the Facebook out of my message and add this board. Thank you

Hey Gang: So, I was not going to put this on Facebook, but I do not have a lot of females in my life to talk to.....(MISSING MAMA). I have recently learned that I have Stage one pre-cancer uterine hyperplasia......the doctor said the good of the bad. To keep it from going to the bad we have to do something. As most of you know I have battled breast cancer since 2011 and having it return in 2013 and now this and one other thing we are watching. Hormones are not good fo...r us and being T.N. (triple negative) they do not know what feeds our cancer so they don't have a lot of options for us.. We have no targeted therapies and basically it is a shot in the dark and/or playing Russian roulette when we do try things. I have been told since day one NO HORMONES for any reason. Well the gynecological oncologist wants to put me on them and a strong dose. My regular gyno. does not agree with the dose and she herself will not make this decision or treat this with the breast cancer so she wants me to see the G.O. that she trust 100%. I should have gone to him in the first place but I chose one that works with my Medical Oncologist..........If I do the hormones, then I have to have a Uterine Biopsy every 3 months from now on to be monitored. I understand that those things are barbaric and I just don't think it is good to go poking on things all the time. I think I am going to opt for the hysterectomy and I would like to have you share your experience if you had one, what kind, do you regret it and any questions you think I need to ask ahead of time. For those of you who know me, know that I do not do surgery unless absolutely necessary so for me to even consider it you know it is something I am not looking forward too. I brought this to Facebook because this is the only way I know to reach many women. I also know that people don't mind sharing but not on Facebook so please feel free to answer through Facebook e-mail or tenncats@gmail.com I am terrified and sick of all this cancer crap. Please keep me in your thoughts and prayers. I do not have an appt. with the new G.O. yet but please answer as soon as you can, so that I will have the questions in order.
Thanks ahead of time and sorry so long.

CinderellaNC

hi Carolina Amy, I also would be interested in what Dr. Lisa Carey tells you . I had Dr. Gallagher from UNC do my lumpectomy and thought she was great. I would happily return to her for a bilateral mastectomy but think it is better to see a surgeon in Charlotte where I live to be closer for follow up care in case of post op complications. I notice many of the triple negatives seem to be for IDC. I have triple negative ILC. I wonder are there any triple negative ILC ladies out there. I think I have heard only about 3% of ILC's aren't ER + but I would love to hear from someone with triple negative ILC if any are out there. All the same I find it helpful to hear from any triple negatives. We are a special group!

Cocker_Spaniel

Hi Stupidboob good to hear from you again. I have PM'd you.

Bunnybumps

Hi Stupidboob, I am PM-ing you too.