Calling all TNs

I think it's really a curve. Risk increases from diagnosis to 2.6 years then decreases steadily before leveling off at a rather low risk at 5 years.

MikeW - I'm really sorry about Mid December's wife and her recurrence. I hope the Xeloda brings her to NED. I'm on my second round of 14/7 Xeloda at 4,000/day and have had minimal side effects. I hope I'm not jinxing myself by saying so! I've read the side effects are very changeable so hopefully they'll get better for her.

Funny, just saw my surgeon for a follow up yesterday. He said the same. 2 years is when you start to breathe easier and then at 3 the recurrence rate jobs drastically

Then I saw this am that Olivia Newton-John has a recurrence to her pelvic bone. Ummm she had BC 25 years ago. Makes me nervous as I had bc in my other breast 25 years ago. So you are never cured from this dreadful thing.

Cathytoo, I go by my dx as someone said, that's when my dark journey began. My MO told me she felt better when I reached a year. She was not sure that I would have a fast recurrence during my first year. Ofcourse she did not tell me this until recently. Additionally she is more comfortable with getting my port out. Initially I was told to keep it in 2-3 years due to recurrence. I've decided to keep it another year.

On this site I've seen a few that have recurred in a year, they were early stagers (2 that are on this site) a few at 3 years and one at close to 5 years. So I stopped looking.

I'm grateful to have this thread, as folks in my life are like quite thinking about it, move on. Hard to do.

Val

Valstim....I was sick readingabout Olivia Newton John this morning. My radiology oncologist told me that breast cancer is never cured...the cells remain dormant in your stem cells. I have two friends who had it return 25 years after initial diagnosis. Neither was TN either time. Both in treatment...again

Val - turn away from the dark! 😘 Go outside and see the beauty of the day before you. Walk, smile, hug someone, laugh at a joke. Nobody has guarantees they see tomorrow. What we have is the gift of knowing we are ALIVE today. Peace. ✨🙏🏻✨.

Everyone....did you have a PET scan BEFORE treatment or after or not at all?

I had a PET scan early on. Now I don't remember if it was before surgery or between surgery and chemo. I think it was between the two. I have another one scheduled mid July.

Cathytoo, I had an MRI before surgery as I have very dense breast tissue and you can't see much on my mammogram. I found the tumor myself anyways which was very noticeable in size and had 'popped up' over night.

I also had a CT scan and a bone scan before chemo. The bone scan was only done because I was in a research group and my MO would not have ordered it otherwise. It picked up a very small lesion on a rib which freaked me out but 20 doc. consulted with each other and said it would make no sense that a large and fast growing tumor would only spread to one very small spot on the left rib and I was told it is 95 % benign and a healing rib fracture. I have no  pain there but my MO will order another one in the fall just to be sure. He said he isn't worried but YIKES!

The research group I was in was with the Carboplatin and in the end I dropped out. It was too much. I did dose-dense AC with 12 Taxol and 'heavy duty' rads. My MO was fine with it. I was node negative and had clean margins. I was always healthy and fit and had the 'perfect' weight so I lost too much weight on the A/C and with that my blood pressure plummeted and I felt the Carboplatin would have been too much. I was fine on the Taxol. My blood counts barely dipped but the way too low BP on A/C made me fall out of the shower - luckily I didn't break anything - and I could absolutely not drive.

Melissa, sorry you have to join here... I find it encouraging that you are fine 1 1/2 year out! It doesn't do any good to second guess yourself! I know, much easier said than done!!! I am trying to stay busy and in the moment and not think about it. Did you discuss our fears with your MO? Would they offer chemo that late out?

All the best to you and everyone else! One day at a time.

Curlyq1974....CONGRATULATIONS! What a beautiful baby. You'll have lots of good times ahead with him.❤️

Curlyq1974 - Congratulations! Your grandbaby has more hair than me!

Before neo-adjuvant chemo I had blood tests, an EKG, an echocardiaogram, a breast MRI, a bone scan, and a chest and abdomen CT scan. I was pronounced healthy...except for the cancer. Between chemo and surgery I had another breast MRI and echocardiogram.

SuprSurvivr, I believe in staying in the light and I think many of us do most of the time. I was diagnosed the end of last September and after the initial testing my plan was set up. I knew that my chemo and surgery would be over by June and that I could go on an annual week at the beach with 9 friends that I have been friends with for 41 years. It became my focus; my goal. Well, I will be starting chemo again in a few weeks and I am not going to the beach. Last night, for the first time, I had anger. My Irish temper exploded and I cursed this cancer for taking my fun away. I am better again today - back to being a Warrior, back to smiling and laughing, but that dark side is probably still inside me and will come out again. I think if we stay on the light side 99% of the time it is okay to have some time to let our fears out - that is only being realistic.

Humor helps me the most - today I sent a picture of me pulling on a little patch of 1/4 inch hair and I asked if anybody had a hair clip to lend me. It lightens the mood for some of my friends that don't know what to say but show that they are upset and scared for me.

Hi all! I am from Calgary Alberta Canada. Haven't seen any posts from Canada. Either way I was diagnosed with triple negative breast cancer in February of this year. Such a shock. I always was worried about getting something like that but never thought it would be me. Does that make sense? I am stage 2 grade 3 54 year old women. I had a left lumpectomy no lymph nodes involved . I have finished my first part of chemo. A /C every other week for 8 weeks. Starting in 2 weeks I will be on taxol every week for the next 12 weeks. At the same time I will be on carboplatin every 3rd week. (it is part of a Trial) Then I will start radiation. 16 sessions.

So far my journey has good. Not many chemo side effects. Just wanted to encourage every one to keep smiling on your journey. The quote on my cancer card (just a laminated card they use for my cancer check information) says " always laugh when you can. It is a cheap medicine." Lord Byron

I found my lump on March 26th. I'll never forget. It was a month before my 41st birthday. The lump didn't feel like anything I ever had before. I just had a normal mammogram and ultrasound in mid October. But I come from a high risk family so I worried about this lump. In fact, currently my mother is stage IV. We've lost my oldest sister and a first cousin to bc already.

By April 4th I had another mammogram and ultrasound, BIRADS 4c. There was an enlarged node along with the lump I reported but didn't feel that. By April 21st I had results from my ultrasound guided core needle biopsy. IDC triple negative. I'm the first known triple negative case in the family. First known I say because we're not sure about one great aunt who died years ago.

Each day that followed my dx was a whirlwind of CT and nuclear bone scans, bloodwork, EKG, echocardiogram, appointments and phone calls. You all know how it goes! I was heartbroken to have to call my mom and tell her my news though. She's already lost a daughter to bc and trying to live each day as she battles pain from her own cancer.

I had my double mastectomy on May 4th. This past Tuesday, May 30th, I had my power port placement. Now with my chest port in, I'll be starting chemo next week. I go in Monday for an education session and to get my schedule. But I do already know it will be AC every two weeks for four times then T weekly twelve times.

You know my dh and I spent this past year being mom's support and ride to appointments. We cooked, cleaned, visited and took her out on her good days. Now we're going to need help ourselves but I don't want to stop helping mom. My baby sister has decided to relocate and move in with mom. I'm relieved! And we have started receiving a lot of support from a couple of my long distance siblings and nearby friends. I'm glad I joined this community as well.

I'm looking forward to our boys getting out of school. I'm still swamped with the afterschool activities, homework, projects etc. That's one heavy load off our shoulders for a couple of months...Plus the summer is usually a favorite time of year for me. I spend most of my time outdoors.

Our first grandchild. Born March 23, 2017. Brian James

I love these baby pics! SO SWEET!

Trish, - you are funny!

I hope that I, too, will one day have a grandchild to post about!

Have a great weekend!

Can't imagine it being more difficult for the caregiver than for someone fighting to live. The best support for me was to be listened to and respected. She has a medical team to answer her medical questions and you can be there as a good listener.

To focus on how to support emotionally regarding hair loss is dependent on the person losing their hair and again just listening will be very helpful for her. Looking for specific solutions is putting too much pressure on yourself and possibly her. If she sees you are trying so hard she might feel guilty or pressure to support YOU. :-)

If you are struggling with this many cancer centres have support for family members. Hopefully you can line up something with them.

Best to you.