Calling all TNs
Comments
-
Lovin, I just watched the video, wonderful wonderful tribute to your mom...Love all the smiles from her and how she truly seemed to enjoy her life.0 -
mags - what is ctc?0 -
Circulating tumor cell
0 -
My MO wants all the following done every 6 weeks.
CEA
CA 125
CA 15-3
CA 27.29
She covers the bases.
Does anyone else get all these done?
Marsha0 -
OMG , Marsha, that's a lot of tests and so often compared to my MO. I get a CEA and a 27-29 at my 3 month check ups. Visits are due to go every 6 months soon. I like the idea of testing frequently; it gives me a sense of security. I'm interested in what others respond. Jan0 -
No,wish I did! All I get is felt up every 3 months(probably going to 6) after this next one. Once a yr, blood test like the kind during chemo-no cancer markers at all. Once a yr-mammagram. No scans unless I present symptoms,so far 1reg X-ray of hip. I would feel a lot better if I did get those tests even if they aren't reliable for some people.0 -
I get the CA 27.29 every four months.
Ksmatthews, I still have pain on the cancer side. I had a mastectomy and rads, too. It seems to come and go.0 -
I go to my onc every 6 months and do not currently receive any blood work at these appointments. I trust my onc and we discussed this approximately one year ago. His philosophy is that there are so many explanations for changes in blood work that are not related to cancer which can add to the anxiety and stress that we already feel. In most cases, additional tests and scans result. He's not worried about the cost to the insurance companies as a result of these tests, but is very in tune to the patients mental health. He explained that in most cases, a reoccurrence would be detected due to symptoms I would report, not blood work. That, he feels, is more reliable information than the blood work, especially for triple negative. He left the choice up to me, and I chose no blood work. If I had wanted to continue with it, he would have done it. In my case, I had some elevation in blood levels one year after finishing chemo which resulted in a petscan and 10 days of extremely high stress and anxiety during the holidays. I was very fortunate to have been NED, but it consumed me and my DH until I got the result. Just another viewpoint. Not sure there is any right or wrong for TNBC blood work.
Kathy
0 -
Just want to wish you all an early Happy Thanksgiving. I tore the miniscus in my left knee cleaning the ceiling fan above my bed. Had to stand on the mattress to reach it. Took me about 3 hours to get on it and to stand steady, lol! Then I couldn't figure how to get down since I tore the miniscus in my right leg same time last year and had surgery for that one too!. The only way I could get down and off the mattress was to drop to my knees. Since I was so afraid to land to hard on the "fixed" knee, I put all my weight on the left knee and tore that miniscus! Going in Monday for my arthrascopic knee surgery.
Going to be 5 years for me too in February. If the cancer doesn't get me, I think I'm going to die from my knees. Thanking the man above I only have two legs.
KS - I too have the chondritis. My BS said I would have it forever. It's from cutting through muscles and nerves that don't always grow back together exactly as before the surgery (especially the nerves). She didn't feel it was from the radiation, but I think that definitely contributes to it. I don't have the pain often, but if I move a certain way - ouch - it takes my breath away. Fortunately it doesn't last long, but before I knew what it was, it scared me when I felt that pain.
I read all of your posts just about every night, but don't post as much as I now seem to use the extra time for injuring myself in some way or form! Be well and know that each of you is always in my thoughts and heart.
Hugs to all,
Linda0 -
Looking for opinions. Had my RO consult today. He said I didn't technically fit the protocol for rads, but it was debatable. Said they look at three things w/mastectomy - positive nodes (I had none 0/4), margins (I was 7mm uninvolved), and tumors over 5cm (mine was 4.6cm). 4.6 is awfully close to 5, I also had lymph/vascular invasion present, it's TN, and my ki67 was 96%. I'm leaning towards going ahead and having rads, and I think RO was too. I think it would give me more peace of mind and help me feel like I've done everything I can to kick cancers butt! Any thoughts?0 -
If you are asking just for opinions..I would say do it..rads are very doable...just my opinion only...0 -
Linda, I tore the meniscus in my right knee back in June. It's no fun. I did physio through the summer and it helped. I'm staying away from heels now opting for flats and dress pants at work. Hang in there.
Hello everyone, just popping in to say hi.0 -
Lana, When I want to kick butt on anything or anybody, I give it all I've got. For me, that was mx, chemo, and rads. Nearly three years since dx, doing fine. Best wishes as you come to making your decisions. Jan0 -
Linda I tore my left meniscus about 6 weeks ago. Horribly painful. Dr gave me a cortisone shot and I'm just getting started with physical therapy. I'm feeling so hopeful that surgery won't be necessary. Wishing you well with your surgery. Keep us posted. Jan0 -
My emend pills were $60 per treatment for a total of $240. so not good but not so bad...it was worth not getting sick.0 -
Hi All,
I just wanted to report that yesterday, I finished my 12th weekly neoadjuvant taxol treatment....the last one! My first treatment milestone!
Now, I get a two week break before going onto AC. The taxol went relatively smoothly, I'm hoping the same for AC.
I love, love, love hearing about people being 5 years out! That makes me happy.
That's amazing how much the emend costs. I've heard such good things about it. We will see how the first AC goes and if I need it, I will ask for it. I didn't have any nausea problems with taxol, I took the meds as directed, but I know the AC is a lot more problematic in terms of nausea.0 -
simple life - congrats on completing the taxol - that is indeed a milestone! I hated taxol - it was not a kind treatment for me - lots of joint aches and pains and pins and needles. Did you get any neuropathy at all? AC is no picnic in the park either, but with proper ant-nausea meds, it is OK. Did you lose your hair with taxol? Rest up for the next couple of weeks in preparation for the next stage of treatment.0 -
I was in the grey area and did rads.0 -
Lana, Back in 2009 the standard of care was 4 pos. nodes or more == radiation. 3 nodes ore less NO radiation. So I did not get rads. BUT I always wished I could have had it. But of course, hind sight is 20/20 and I am doing well. My reconstruction after BMX has been a piece of cake with good results. You certainly have an important decision to make. If I had to do it all over again, I would do the rads.....I think it would have given me a little more piece of mind in those early days. After you do your research on the pros and cons, follow your gut....its your body and your life! As someone else said, there is no right or wrong choice....
0 -
Newbie here. I'm still wrapping my head around all of this. A little about me. I am 33 years old, and I am married with two children, ages 7 and 4. My mom passed away from breast cancer (when I was 9 months pregnant) but she was 70 years old. They told me that since I was "high risk" to start getting mammograms at 35, rather than 40. Which I fully intended to do....However, I started to exeprience the weirdest pain in my left breast. I started feeling around and thought I felt a lump, but wasn't even sure because my breasts are very large and very dense. Went to doctor and she said it felt dense and cystic, and probably nothing, but due to family history, she sent me for a diagnostic mammogram and ultrasound. The pain got worse, but then disappeared the day I got my period. Lo and behold, they found 2 masses at 1 o'clock (2cm) and 2 o'clock (7mm). Had core biopsy and they also biopsied a suspicous looking lymphnode which also came back positive. Pathology came back triple negative, and ki67 88%, so they don't think the cancer has been there long. They were suprised I felt pain since the tumors are relatively small and glad I was sent right away for tests because many OB/GYN's would have looked at a young woman with pain (that disappeared with onsent of period) and figured it was a cyst, or just advise them to monitor. I am thankful that the pain let me to find it, but still in shock and traumatized that this is happening to me. I have to go for a petscan Monday, and I am meeting with the oncologist Wednesday. They want to do chemo first. And all I keep thinking is that I have to do all these tests and appointments and meanwhile these cancer cells are just multiplying and dividing like crazy and I am helpless to stop it. I'm ready to go in the backyard and take the stupid things off with a machete! I did read that triple negative cancers are highly associated with glucose and carbohydrates (which I admit I have too much) so I have stopped all of it. Even if it's a bunch of phewy, I am still eating healthier which can't hurt. So that's my story. Nice to meet all of you. This community is amazing and has been helping me as I start my journey.
~Andrea
0 -
Andrea, welcome to the boards. The ladies (and men) on here are amazing. So many of my questions were answered, fears and rants listened to, and much hope given. And there is quite a bit of humor on here as well, which we can all use! I know it seems as if time may be wasting, but the tests are needed . I had a full 2 weeks of testing, then had a port put in immediately following. Chemo was started right after port, dd AC/T. In my opinion, there are many associations posed with cancer, but I think every one's cancer is unique in a way. The answers are not always clear cut, so even though reducing sugars and carbs will help with overall health and possibly cancer, don't get too hung up on it. Enjoy a treat every now and then. Life is meant to be enjoyed - moderation is my way.
I am pleased to see so many of you reaching milestones! It has given me much hope for my future. In 10 days I'll have surgery again, free flap with wide skin excision. How was recovery for those of you who had this type of surgery. I have to admit, i'm feeeling quite apprehensive.0 -
Lana:
My diagnose goes back to February of 2009. I had 1.2 cm nodule - clean margins (after a re-excision for one dirty margin), no vascular, KI was 60%, and no nodes. My onc was a specialist in TN cancer as well as treating hormone positive. She gave me absolutely no choice whatsoever as to whether or not to have rads. I had 28 rounds and 5 boosts at the end. My doctors thinking back then, and still is, is that with TN throw everything you can at it and take no chances as you only have this one shot at hoping to kill it all. Please consider that when making your choice. I wish you nothing but the best.
Linda
Oops! Editing to thank you all for the good wishes on my knee surgery monday. Much appreciated.0 -
Slowloris...I had diep last year...then left side replaced with gap flap. My diep recovery went relatively well..the gap not so much. My next go round is on the 4th, I am now in the revision stage. 6th surgery with same doc. I trust her completely. The complications I have had were quite unique to me. Pm if you want more personal info, I am happy to share my experience.
Maggie
0 -
Hi ladies,
I have exciting news for all of you. A lady who lives very close to me called me couple days ago, as I asked American Cancer Society to find me somebody who has the same type of cancer and are many years out. She is 11 years out now! When she was diagnosed, she was also 34 years old, and had a 5 year old (same as me!). She was triple negative, stage 3 and 1 node positive. She did lumpectomy, chemo (AC+T), and radiation. Just want to share with you that there are TN people out there live many years after being diagnosed.
Have a good weekend.
J0 -
Andrea, I'm sorry that you are having to go through this experience, but I'm glad you found this site and this thread. I felt the same way you did when I was first diagnosed in July. I wanted that thing outta there and quick! Going through all the testing seems to take forever! I felt much better once they had come up with a treatment plan and explained it all to me. There is a lot of good information at the TNBCfoundation.org site.
Jianchi, I also have been hooked up with a TNBC cancer buddy through Vanderbilt's Hope program. She is 6 years out and disease free. It gave me great hope to talk to her the first time. We live pretty far apart, so it's unlikely we will meet in person, but I like to talk to her about once every couple of weeks now. We are gradually getting to know each other through phone conversations. Just knowing she has made it though through first few years lifts me up.
I had a rough evening tonight. I was hoping I would escape my usual steroid crash (complete with uncontrollable sobbing) after my final taxol infusion this week, but I did not. It came on fast and hard around 5pm tonight. My husband found me in a heap on the basement couch and got me to crawl into bed. Fortunately, I was able to fall off to sleep pretty quickly. It's about midnight now, I just woke up a few minutes ago and seem to be back to normal. I hate those crashes. They are a true nightmare for me. I have a two week break before I start AC. I'm wondering if I will have to go through the same thing with each infusion of AC. At least there are only four of them.
Kay0 -
simplelife4real- that's good you find someone to talk to that lifts your spirit! I was so grateful that she called. She just made my day!0 -
Anybody on propranolol? They put me on it while I was on abraxane and avastin because my blood pressure and heart rate sky rocketed. Now my doc thinks the medicine is why I am so tired so she took me off of it. Now I am having anxiety and rapid heart rate again. I now remembered that propranolol has shown promise in keeping recurrence away, so now I am thinking I should not have stopped it. Any thoughts? Anybody ever heard of the benefit of being on it?
Where is stupidboob? We miss you and hope everything is ok!
I feel for you all that are doing chemo and rads right now. It seems like forever while it is going on and oned day you will look back and think-wow, that went by fast!0 -
Kay from Crossville, TN. You are not too far from me. My husband actually has family in Crossville. The Kerley's. You know any of them?
As far as the diet goes, someone mentioned carbs and sugars. You can read tons of useless stuff on internet. My dr's say anything is fine just in moderation. I myself choose not to let cancer control my life. I eat, drink, do whatever I want. There have been woman on these boards whom were major health nuts and still got cancer. So do what is best for you!0 -
hi bak94, i saw that your two diagnosis are 9 years apart, and are both TN, is the second one a come back? Thanks!0 -
Ks- I'm with you. I don't completely avoid anything except artificial sweetener (no diet soda). I too think that completely healthy women still get FC, so that lifestyle doesn't prevent it. Yes, I could stand to lose about 10 to 15 pounds and maybe if I exercised I could do that (I REALLY hate to exercise!). Anyway, just my opinion- everything in moderation!0
