Calling all TNs
Comments
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How to you determine your cancerversary? From the day of diagnosis or your surgery
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I always use my date of dx bc that's when I started fighting. Use whatever makes most sense to you 😁
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I use my diagnosis date as well. I have heard from the johns hopkins website (ask an expert) that if TNBC was to recur, most likely to recur within 2 years of diagnosis. Anyone else hear this before??
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I have read 3 yrs and 5 years. I have never heard 2 yrs.
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Hopkins says 2 years, start celebrating, med journal articles say 2.6 years is time of max risk of recurrence. Risk drops A Lot at 3 years, and falls below that of estrogen + at 5 years, as per my NYU oncologist. I am praying Hopkins is right
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greenae, I'm sure we all want to believe that. I know my dr. told me that at 5 yrs., you have no more chance of getting a reoccurrence of TN than someone who has never had BC at all. I'm curious if there are ladies on here who have had a reoccurrence and how long did it happen after the first diagnosis
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Cathytoo my wife did not have ACT. She couldn't because she had had her lifetime limit of Adriamycin 17 years prior in a battle with Lymphoma. Instead she had Cisplatin and Taxol.
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I'd kinda like to know how they distinguish a recurrence from a "new primary".
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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.
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Yes, like ALHusband said, a curve. I saw a chart, I think at Kaiser. It showed the ER+ chance of reoccurring going up as time went by whereas a triple negative chance of reoccurring going down as time elapsed. Those with triple negative the further out you get, the more likely it won't come back (in general terms)
Mid December wife's ER+ turned negative with numerous small mets to the spine. She's on Xeloda now, 7 days on and 7 days off. SE's are miserable.
MikeW.
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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.
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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
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Mike so sorry about Mid Decembers wife's recurrence.
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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
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I was and am very upset about her as I reached 25 years on my first bc this february. It has her2 positive. That's the most they were able to say back then. So now I have to worry about it lurking along with the triple negative of my recent dx. Just when I get my head in a good place, I get drawn back towards the abyss.
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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. ✨🙏🏻✨.
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i was diagnosed a little over a year ago at age 36 stage 3 triple neg IDC. my tumor was 13.5 cm. 0/12 nodes were clear and no vascular invasion. still wanted me to do chemo after mastectomy. i had a left mastectomy and refused chemo. now 1 1/2 years later i am regretting my decision. i live in constant fear. every ache or pain i think its cancer. if i had to do over again, i wold of done the chemo.
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Everyone....did you have a PET scan BEFORE treatment or after or not at all?
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Cathytoo
I had 2 MRIs before surgery, and no other.scans. I copied/pasted this for you. I am treated at NYU, and they follow this protocol. No other scans unless symptoms for more than 2 weeks. I have "scanxiety" and so happy to have had no PET scans. I think MRI is suggested when implant is 10 years old, to check it's still intact
Figure 6.1: Recommended medical care after breast cancer treatment
Who
Plan for care
Medical history and physical exam
All survivors
1-4 times a year (depending on your situation) for 5 years, then every 12 months
Mammogram (for remaining breast tissue and/or opposite breast)
Women treated with lumpectomy plus radiation therapy
6 months after radiation therapy ends, then every 12 months
Women treated with mastectomy
One year after mammogram that led to diagnosis, then every 12 months
Pelvic exam
All survivors
Every year
Pap smear (Pap test)
Women ages 21-29 who have not had their uterus removed (have not had a hysterectomy)
Every 3 years
Women ages 30-65 who have not had their uterus removed (have not had a hysterectomy)
If also getting an HPV test, every 5 years (preferred)
If Pap smear alone, every 3 years
Women ages 66 and older who have not had their uterus removed (have not had a hysterectomy)
Talk with your health care provider about whether you need to continue Pap smears
Bone health exams
Women at higher risk of osteoporosis due to risk factors including:
- Aromatase inhibitor use
- Early menopause due to treatment
- Age 65 years or older
- Age 60-64 years with family history of osteoporosis or with low body weight
Bone mineral density tests every 1-2 years, depending on a person's risk factors
Women at lower risk of osteoporosis
Office visit to check osteoporosis risk every 12 months.
Adapted from National Comprehensive Cancer Network (NCCN), American Society of Clinical Oncology (ASCO) and American Congress of Obstetricians and Gynecologists materials [3-7].
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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.
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Hi everyone! I just thought I would pop on and share a little bit of my GREAT news. Saturday, May 27th, we welcomed our first grandson!!! I introduce to you all Kevin Joseph Patrick Porter, weighing in at 7 lbs, 10 ozs, and 19 inches long. God is good!
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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.
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Hello all. Weighing in on scans. I had my initial treatment plan outlined by MD Anderson. Due to my stage (III) they recommended a PET before treatment. It was clear. Later I had a brain, neck, chest and spine MRI. All clear, but those were ordered due to my stroke after rads. Their protocol and my cancer center agreed, they don't routinely do PET scans for lower stages. Its a lot of radiation. My MO will only order a scan if I have symptoms longer than a month.
I'm trying to get back in the light. My gardening and wonderful support system helps.
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Curlyq1974....CONGRATULATIONS! What a beautiful baby. You'll have lots of good times ahead with him.❤️
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Curly!! Thank you for sharing such wonderful news! Best wishes to all of the family!
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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.
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hello all,
I am a frequent reader but not post much. Doing good, thankful for every day on this side of the grass.
Still after 4+ years have bad days but less frequent. See my DO every 6 months.
Cathytoo
I had PET after dbl. mastectomy before chemo. All clear. I have had 3 since stopping chemo. I can't take tests with contrast. Allergies. So PET is really my best test.
Melissa
I only had two chemo treatments as my allergy to all meds. I had no choice. I am 4+ years & feel good. I do yoga & try to exercise/swim frequently. Eat healthy & have a rare drink. Life is good. Keep spirits up as I believe that is important.
Best to all. Happy Summer.
Marsh
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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
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Hi Ljbrost - I'm from Portugal and I haven't seen any posts from my country either. I love that quote from Lord Byron. I was talking about the changes in my life with one of my best friends before chemotherapy. I had decided to stay out of work and concentrate in this fight. Like many of us I was quite a perfectionist and a workaholic and I was afraid i wouldn't be able to do things like I used to and to become frustrated. Of course my income would suffer too... Se told me, you'll find lots of good things you can do for free, like enjoying the sun, walk in the gardens and woods, be with your kids. Here we have lots of sun and it has been quite therapeutic... and cheap. I'll be starting RT soon so the sun will have to be restrained but I have found during this time you can discover new good things to see and to do.
Curlyq1974 - congratulations. This newcomers to the world make living so much happier.
For those visiting this site for the first time: Chemo can be terrible but it can be tolerable. I had few side effects and with adequate rest (and support) time flew by very fast. Lumpectomy was much less painful than i expected and I recovered fast. After one week i felt I could have a normal life. I think I have been lucky so far and I'm very grateful. But in the beginning I only thought about the bad things that could happen and I really want to tell you it doesn't have to be like that. And if one thing bad happens it doesn't mean the rest of your journey will be like that. Follow the treatment plan made by the doctors you trust and don't give up on anything before you tried. Good luck for all.
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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.
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