Calling all TNs
Comments
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NavyMom, you're a great example of how our doctors assess our individual case and provide a recommendation based on their analysis of information available, including what the benefit to risk ratio is to the specific patient. Your team administered 6 rounds of TAC, and at that time maybe 4 was a standard protocol, so maybe they assessed the benefits to ratio risk for radiation and chemo, and felt strongly that you would have an excellent prognosis with the 6 rounds of chemo. Pre-celebration for you for 5 years next month! Congrats!
Tek: I don't know if surveillance is more frequently with a LX vs MX. There could be other reasons as to why some has surveillance more often than others. My team recommended 1x year surveillance (which if I had not had bc,having been over 40 would have still done a mammography 1x a year). However, I added in a 2nd surveillance after researching this on these forums and learning that other early stage TNBC women were doing the semi-annual screening, and my team has been very obliging ... but they did mention that they feel at 3 years I could go back to annual surveillance. I have an u/s and MRI yearly, where one is done, and then 6 months later the other one is done, and so it rotates every 6 months.
Regarding does extra screening put this at the forefront of our mind ... I can tell you that for me, having my quarterly Onc appointments has not made me worry any extra. They gave me the choice of moving to 6-month intervals, but I stayed on a 3-month pattern through this year. I had my quarterly checkup this week, and it had really felt like it had been a very long time since I had been in to see my Onc, even though it had only been 3 months. My Onc was so pleased to hear that - he said that was a sign that I was back to living again. I think part of things being at the forefront of our minds, also has to do with the environment though and our association to specific words, appointments, environment, etc. The environment in which an MRI is done is more intimidating to me, and the place where I have the u/s done is not intimidating to me. So in my case, I have benefited immensely from the overall environment.
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Hello everybody. I just got my genetic report today. I do not have BRCA 1 or 2 mutation. I have a very rare variant of unknown significance which is not related to breast cancer as the knowledge they have know. This variant is so rare that only me and another family, out of 250,000 people has it. So as of now, they do not know anything about it. I am seeing my breast surgeon on Monday. Otherwise I am doing good. Eating pretty well and exercise daily.
Hope everybody have a great weekend!
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Jianchi, glad to hear you are BRACA negative. I hope it eases some of your worries.
Inspired, thanks for the vit. D article. Funny thing for me is, my pcp had prescribe it for me about a year before I was diagnosed , and I had been taking it for about a year before. I recently went from 1000 to 2000, and I do get sunlight from walking the dog and gardening.My levels are good, but maybe I can still go higher. I'll check with my next blood work.
So I had my Brain MRI and Pet results given to me yesterday. MRI is good, no brain or lining involvement.
Now for the good news/ bad news again. Official reading of PET says progression in soft tissue and nodes. No liver or lungs, but clavicle is "suspicious". The thinking is that it can't be relied upon as accurate bc I was on Neulasta, which can stimulate the collarbone area and give a false positive, so it is to be watched. Some of the nodules I had have disappeared, but new ones have popped up. The most concerning is that a deep lymph node is now highly reactive (suv of 20). So although carbo gemzar may have helped some, it's not working enough. I am now on Halaven, started yesterday, 2 wks on, 1 off.
I also started paperwork and testing for a clinical trial, basically an immunotherapy type of tx. It's called PD-L1 (programmed death ligand 1). Merck is funding the study. If my tumor makeup doesn't fit the criteria, my MO has 2 others she thinks I'll benefit by. I should know in 3-4 weeks, at which time if I qualify, I'll take a 3 wk break from chemo before I start on the trial.
Emotionally, I'm doing pretty good. I've almost got "maintaining my peace" down. I shed some tears quietly, more for a sadness than fear or anxiety. Optimistic that these buggers stay only in my skin until I hit on an effective treatment. I'm signing up at the local Y this coming week to do some yoga and exercise classes.
Enjoy your weekend everyone.
Lori
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Interesting information about radiation and mx. My team went for the max - I had BMX, ALND, A/C & T and rads - with 2 positive nodes. It looks like they gave me the best shot at NED!
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Hi, I was diagnosed January of last year at the age of 36. I had a double mastectomy in February then started chemo the end of March. I had 4 DD A/C treatments then 12 weekly Abraxane and finished August 12th 2013. I had no nodal involvement so the radiology Onc said I didn't need radiation based on that and my path report. Lord I pray he was right! My tumor was 3.5 cm and I was stage 2A. I worry most about recurrence especially after seeing some of you on here who were stage 1 and still had recurrences or mets. I mean they say eat right, exercise, try not to stress to reduce recurrence, but it seems like that doesn't even work sometimes! I ate right, exercised, had very little stress before I was even diagnosed. So really how much does that stuff factor in? Are we TN girls basically screwed? It also scares me that they don't do anything other than three month checkups, unless we have a symptom! I was treated at UNC which is supposed to be among the best and my Onc has many years of experience and is a top researcher but they can only do so much based on your particular case, according to him. Sorry for my rant but I've been nothing but stressed ever since I finished treatment because there's no targeted therapy for TNBC so it's hard to stay positive or it is for me at least. Don't get me wrong, I am glad I finished treatment but still. It seems like I get more scared as time goes by because the highest recurrence rate for us is during the first three years from diagnosis! Aargh! Could someone please help calm my nerves?
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Posted by MayWin March 21, 2014 in another forum. Stage 2. You can look up her info and other posts by typing in her profile name under the search option on the menu at left of page.
"Hi- I'm eleven years out!! You don't hear from us long term survivors because after five years or so, we don't check back in very much! I make a special point to come by once in a while to say hello. Otherwise, I'm out living my Life
"She posted in the TNBC Forum under: Topic: Long Term Survivor Examples which was started by BanR.
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Hello, ladies! I have lurked here for several months and have finally gotten the courage to speak up. I hate public speaking...is that what this is?!? Lol
Re surveillance - Women in my support group have talked about taking an active stand in this. I've even read here how some are insisting on closer follow-up than what is "normal". My MO has told me I will be on a 3 month regimen for 2 years, 6 months for 3 years and then move to yearly. I had a PET scan on 3/20 which was 6 months post treatment. It was clear (thank you Jesus) so MO said I will have another one in 6 months (September) and if (when) it is clear, I will not have another one unless I have symptoms. I try to schedule visits with MO, breast surgeon and PCP so that someone is touching and looking at me regularly. Surveillance bothers me too. I feel like I should be doing something to fend off recurrence. I felt like I was fighting during chemo and rads, but now feel as if I'm just waiting for it to come back. My PCP has told me from the beginning to get my affairs in order and then enjoy what time I have left. I thought at first he was being negative about my prognosis, but now understand that this should be how everyone lives life, cancer or not! I just wish I could stop worrying about the "what time I have left". No matter how good my day is, I always have my diagnosis in my thoughts.
As I read over this, it sounds as if I'm being a little negative. I believe staying positive is extremely important, and I strive to be as positive as I can. It's a goal I have set for myself so when I find myself leaning toward negative, I stop and look back at where I have come from over the past year. It helps me get my priorities straight.
Sorry about my rambling. Sending my prayers and positive thoughts to you all!
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Cat, I'm sorry to hear the taxol is so hard on you right now and that they are going to need to do another biopsy. I hope things improve with the taxol and that this next biopsy gets enough tissue and goes smoothly.
Slowloris, good to hear from you and that things are going basically okay. May that chemo zap those nodes!!!
I just finished my first week of rads (4 sessions down, 29 to go). As expected, this first week was a piece of cake. I just wish it would stay this easy all the way through. I did find a good soft t-shirt with flat seams that fits nicely up under my arm to wear later as that area becomes more tender.
Gram, my MO told me that if I had gotten a pCR, my chances of survival would have been 95%. I do like to know the odds even though I understand that they don't predict what will happen to me as an individual. I didn't get a pCR, so my odds aren't quite that good (85-90%), but I still think they are pretty good and I don't worry about it much...at least not these days.
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KooKoo, I don't understand why your PCP told you to get your affairs in order. He or she isn't an Oncologist. When I've discussed things with my PCP she's like cancer isn't my area of expertise, that's what your Oncologist is for. She says obviously that's why we have specialists. She has been a doctor for a long time too so has many years of experience, but she's right when it comes to anything cancer related she leaves it to the experts in that field.
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luvmydobies - you are thinking exactly the way I did at first, but that's not how he meant what he said. He was saying be prepared for anything, but LIVE LIFE. He always defers to my MO and has even given me questions to ask that I would not have thought of. Sorry I gave the wrong impression. I have great confidence in all of my docs and believe that is extremely important.
Cat - I had Taxol weekly x 12. My greatest struggle was/is with neuropathy in my feet. There was a time when my MO was thinking of stopping Taxol because of the neuropathy, but I refused and quit telling them how bad the neuropathy was .... Nothing was going to stop me from getting my full 12 rounds. I viewed stopping as not fighting. So I toughed it out. I also had a lot of body aches and pains. Still have joint stiffness and at times move around as bad as my 89 year old grandmother. But all is better. I will be praying for you!
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I too don't understand why the PCP would say to get your affairs in order. We have several stage 3 survivors several years out now, without a recurrence. I also have a colleague's wife who is 11 years out, stage 3b (6cm) tumor and 11/14 nodes positives ... who celebrates 11 years this summer. I have heard of women saying their doctors have told them to get their affairs in order, but in each of those cases, it has only been under very final circumstances, where they had extensive progression and evidence that they were not going to make it for an extended period of time. I do understand what you are saying, I suppose in life we should all live with our affairs in order, you never know what might happen. We had a big group of sky divers in town preparing for a huge jump to make it into the record books, and on Tuesday they interviewed a 36 year old lady here from Germany, who was part of the sky dive group. 2 days later on the practice jump, her main parachute failed, and her backup chute didn't deploy - she was killed. The news replayed the interview they had with her from just 2 days earlier. It was a shock and sad. But in my opinion, to live under a statement that a doc has made to 'get your affairs in order' when you appear to have things under control with your health management, I feel brings undue fear and anxiety.
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Oh KooKoo - I just read your updated post. Thanks for the additional explanation. I had an experience with choice of words with my Plastic Surgeon. He said something was "adequate". Which I over-analyzed, why did he say adequate, because I think of adequate as "meeting the bare minimum"...but his experience with the word adequate, being a doctor, meant 'the right solution'. Then I understood his statement better!
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All this talk of "getting your affairs in order" reminded me of the first time I went to Vanderbilt for my initial consultation. At that point I had only had a diagnostic mammogram and ultrasound, but no biopsy. It was pretty likely I had cancer but hadn't been confirmed. One of the first things the nurse practicioner said to me was "it didn't look good." I thought she was telling me I was going to die! She only meant that it looked like I had cancer. Those words still ring in my ears sometimes. It took several months for me to finally figure out what she was trying to tell me that day. Someday, I'll tell her how I mistook what she was saying to me. She is a great resource and sharp as a tack, but she really threw me for a loop with those words.
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Ladies your cancer fight is far from over and it never will be, it will continue until the day you die. I am very passionate about this. Our Onco's and Surgeons have done their bit and given us the best chance that they could now it's time for us to do ours. You cannot give up. You cannot think about recurrence all the time or what might be. This big beautiful world was given to us to live in and we must take every opportunity to make this happen. If we are not going to fill our lives with meaningful things and only think of recurrence then we might as well give up now. Navymom's son who is serving your country wouldn't give up, if a mate of his got killed he would continue to fight for his life. If Linda who lost her beloved girl had given up her granddaughter would not have had the loving, stable and complete upbringing that she has had. Cat is doing everything to overcome these further problems but she is not giving up. No I don't read the stats and they get on my nerves keep showing up because they pull me down when I am fighting to stay alive without recurrence. I'm not saying it's easy but neither was going through crappy surgery and chemo yet we made it and all the newbies will make it too. There are lots of people out there with worse things than we have, yep I know that's hard to take but its true. At least we can say we have given it our best shot. I just cannot continue to read about percentages, how long I have to live or not, what to eat or what not to eat, new treatments that never seen to happen. I have had the same diet for 65 years so all I can say is, this frigging cancer took a long time to come. Yep its a crapshoot but so is a lot of things in life. Cry when you need to, rant when you need to but push those thoughts of recurrence to the back of your mind every time they come and DON'T GIVE UP. This is not just my Sunday rant, it's a rant I try to give myself everyday.
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Cocker- You've been at this a little longer than some of us, this is very new to me. I guess I need some time for all this to sink in. I've done my chemo, had my LMX, still need rads and then reconstruction. I hope I will have your outlook when these things are behind me. I want to be positive and have been strong for my hubby and kids but there are times when I wonder what will happen. I need to take one day at a time, hope for the best and try to live the life I had before all this started. Thank you for putting it all in perspective. I will learn to put this behind me but it does take time. I am 57 and want to live a long prosperous life, I just hit a little bump in the road.
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Well said Annie! yes..ladies there will come a time when you get rid of those 50 old sweaters you are never going to wear again...not because you are getting your affairs in order...you are getting rid of the old stuff to buy NEW!
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my mom was just diagnosed at triple negative at 64. We are trying to determine the best treatment option. Chemo seems to be too big of a risk to maybe not even cure her so we are torn on what to do. I have a hard time believing this belief the chemo is the answer all the time, especially when I read all of these articles about cancer being a 60 billion dollar business and there being natural cures.
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Cocker - I so agree with you, however, like Gramof2boys, I'm still struggling to live every minute of every day with that attitude. I do not dwell on statistics, Use the Google doctor or listen to what "they" say. It took me months to be able read, much less reply to topics on this discussion board. I knew that, for me, an overload of information from those sources would only work on me mentally in a negative way, so I avoided them like the plague. When my fear creeps in, I don't have those statistics in my head to make me even more afraid. I have found that for me, music is soothing and helps me get in a better frame of mind. I'm learning and getting better at it everyday, cocker!
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Amen Titan! I'm getting my NEW girls on Wednesday!
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Gram you have had your chemo, had LMX and have rads and reconstruction to do but you are overlooking one thing, you didn't give up fighting to live or you wouldn't have done any of it. You were fighting from the minute you learned you had cancer and treatment was planned. It's the things you are doing now that you need to take one day at a time ie finishing your treatment, for you, your hubby and your family. Yep there are times when you wonder what will happen, you may be scared, fed up with the whole lot of treatment and feel you have had enough as we all do/did, but I bet you $50,000 you won't give up. Recurrences may come for some, maybe even me, who knows, but just don't let the thought of recurrence spoil every single day that you do have left. If you feel well embrace and enjoy every minute. Fill your days with things you can do for yourself, and your family and gradually those bad moments will get less and less. No I will not read stats or links, nothing against Inspired at all, (love yer Inspired) but they take away the fight in me and make me feel down and try take away my resolve. The bumps in the road of life will come in many different ways Gram not just through cancer but its learning to banish those thoughts from your mind as much as you can and you will do it.
Titan I've still got a lot of those old sweaters left. I don't know about getting my affairs in order more like my wardrobe but the old feller reckons I have a lot of clothes, yea right.
DaughterOfa only your Mom can make the decision as to whether to have chemo or not, but I believe she has a much better chance if she has it.
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When a fear comes up, have yourself a validation reference - someone that has had a similar diagnosis and is many years out. Seeing that someone else with a similar situation had success, can help to calm the nerves and provide a model for you, that it can be done. Look for who you want to be that model, and sometimes, when you get into a scary place, send that person a note. Ask them how they got past a scary thought - or ask them for suggestions on things they did or what they think helped them. You'll get a lot of support and feedback - it will help!
- management of fear
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KooKoo you are doing so well just like Gram is. There will be days when you struggle to keep those pesky negative thoughts out of your mind but you have found something, just like I have, that music helps your frame of mind. I love soothing music and couldn't do without it. Others find pleasure in other things and that is so good. Nothing about a cancer journey is easy, it is scary, sometimes you feel like crap and have to drag yourself around but you will find it gets easier and easier as your treatment comes to an end. Then you may get the 'what if's' which we all have had and that is just as scary but doing things you enjoy, listening to music, sewing something for yourself, exercise, anything, that will help you through each of these troubling thought days, just don't be tempted to try and look up something on google which may never happen. Little by little it will get better. Inspired is right find yourself a mentor if you feel you can't open up enough on here for any help but everyone of these ladies have been through it and are a wealth of knowledge. We won't tell you if you are feeling unwell to 'ignore it and you will feel better' but we will tell you to talk to your Onco or Surgeon and get their advice after all they know you and they know your plan. But we can help if chemo is making you feel sick or you have constipation or a myriad of other things that one of us on here will have had, Just remember we have been there and we know what you are going through. If it wasn't for the fact that I only have one boob, sometimes I would swear it was a dream. You will get there one day, just keep fighting.
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Daughter Of, when I was diagnosed TN in Oct, 2012, it was less than a month before my 64th birthday. While we all respond differently, I found my A/C chemo to be relatively uneventful except for around the last treatment when I began to feel fatigued and spent time on the couch just reading, watching old movies. I was my normal 'hyper' self within a few weeks after it ended. Definitely doable for us seniors.
Sending best wishes to you and your mom.
Carol
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inspired and cocker- such good recommendations regarding support and keeping the fears at bay. I really liked the things you both said. Thanks
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KooKoo - yes, I still have some neuropathy from the first time I got taxol in 2012. My onc wanted to skip the last dose (I got dose dense every two weeks), but I stuck it out too. Thankfully, so far, the second infusion isn't hitting me as hard. I am still able to function.
I am getting another biopsy on Tuesday from the nodes in my neck. I am already scared and having nightmares. I need to take you all in my pocket again!
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Daughter I am 60 and just had a complete pathological response with my chemo so do not understand where you are coming from. Do some more reading.
I got by best advice on here for living with this stuff. I will paraphrase for the way I feel about it. Get over myself, live every day to the best of my ability, love my loved ones the best I can every day, enjoy everything I can every day, let go and let God.
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Which of you ladies recently said that you researched a specific chemotherapy drug, and you talked to your Onc and they were going to add it in to your treatment? What was the name of it? I know someone newly dx'd (friend of friend) and your info might be helpful to her.
On a different topic, for those of you who have just now had a recurrence, I found this article: "Optimal strategies for the treatment of metastatic triple-negative breast cancer with currently approved agents" Article: Oxford Journals: Annals of Oncology
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DaughterofaTN: I would consider multiple specialist opinions to further help you and your family decide on the best choice of treatment for your Mother. Initial treatment is often the best chance for a cure or remission of TNBC, and as Tekwriter (age 60) mentioned, she had a pCR - and studies show that those with a pCR have an increased likelihood of long-term survival.
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I came across this article, which was interesting. This is an Excerpt from the Intro on the article:
"To find out how clinicians can discuss and explain the implications of a diagnosis of triple-negative breast cancer with their patients, Sandra A. Finestone, PsyD, a member of the Susan G. Komen for the Cure Steering Committee for the Breast Cancer Curriculum on Medscape, and herself a breast cancer survivor, interviewed Hope S. Rugo, MD, Clinical Professor of Medicine and Director, Breast Cancer Clinical Trials Program at the University of California at San Francisco. Their conversation is both revealing and instructive and is presented to help clinicians communicate more effectively with women who have just received a diagnosis of triple-negative breast cancer."
I have tried to copy the link into a new browser and it doesn't take me directly to the article, but the log in page. If you can't get to the article, copy and paste the title into your browser, and then click on the link that comes up for it.
http://www.medscape.org/viewarticle/711773
If you can't access it without logging in, you can get to it this way:
Copy and paste this: <Talking with Patients about a Diagnosis of Triple-Negative Breast Cancer: An Expert Interview with Dr. Hope Rugo>
The first result in your search engine should be this article and then if you click there you should be able to access the article without having to log into a site to access it.
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Cat right there with you in your pocket. Deep breath, one foot at a time and you will get there. Is there anything you can take or do to help calm you. Karen found an Ativan helped her anxiety, not sure if we have them in NZ. Keep as busy as you can, watch a funny movie, laugh as much as you can. When you go in tomorrow I will be right there beside you, I am having a scan on my liver and ovaries. We will get through this.
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