Calling all TNs
Comments
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Oh I'm so glad Bluebird contacted you - she will have a lot of information for you on IBC.
Shari, that is so well said and you make a great point! It's important when reading to not only notice the publication dates, but the reference date range of treatment for that particular group. Some publications may look to have new information due to a more recent publication date, but upon closer look, you often see information that was gathered and collected from patients receiving treatment as far back as the 1980s, using older protocols.
I agree also, too much information can be hard to sift through, and as you mentioned, our doctors have much more knowledge than we do - and they know how to interpret, and apply that which is particular to our individual case. I took advantage of that very fact, and used that to help me start living again. My Onc was not fretting about my prognosis, he seems to have all the confidence in where we are and where I want to be, so why should I have any less confidence than that? I gave the control back to him, so I could resume living my normal life.
On a side note, I figured out a way to get my broccoli in on a daily basis. I've started dropping it into my kale/blueberry smoothie. I know at first glance, this might sound gross, but the broccoli being cold has almost no flavor to it, so I have found you can add it in without affecting the taste of the smoothie. So happy to have found a new way to eat this daily!
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Inspired almost every post of yours is about recurrence, risk or percentages of how long we possibly may have. I find the posts detrimental to the ladies on here - some are trying to cope through their recurrences - some are trying to start or cope with their cancer diagnosis and treatment - some of trying to forget cancer as much as possible and are trying to live their lives as best and as happy as they can. All these posts of recurrences are of no help to them at all. There is nothing positive about your posts. It all seems doom and gloom to me. You seem as if you only have one word in your mind "recurrence". Not one of the ladies that were on here when I was diagnosed and most of those ladies are still on here, never ever mentioned the word recurrence to me. They were as positive as they could be, full of life and totally encouraging even though some were still going through the same thing as I. The last words my oncologist said to me was "there is no reason for you now not to live a long and happy, life, disease free". We should be encouraging, being positive, trying to make them laugh, supporting them, not filling them up with constant links on recurrences. I know you are only trying to be helpful but I groan every time I come on to see how someone is and there is another post on recurrences. This is a word we should be pushing to the back of our minds because believe me the word returns every now and again without any help from posts to remind us.
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Debra, I use broccoli all the time in my smoothies-here's a hint, steam the broccoli just until you start to smell it (sounds weird, but don't steam until cooked) and that takes the slight bitter taste out and it has that nice sweet taste! I do this in large quantities and freeze what I don't use.
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Ah.... yes the old Lx versus Mx debate. The pre-med.com article above does cover residual cancer on re-excision, but is actually not comparing rates of recurrence. In fact, many women who undergo Lx have re-excisions to clear the disease, so the fact that the study shows TN resides in that tissue seems to me to prove the merits of re-excision as targeted therapy (as opposed to Mx which indiscriminately clears all tissue), not necessarily its flaws. Also the ncbi study cited above actually looks at the merits of radiation to control local recurrence in Mx patients, not Lx versus Mx recurrence... and this has been an area of intense study in recent years.
From what I've seen, post-Mx recurrence rates are generally estimated to be (and bear in mind some of these studies go back many years, before current treatments) 5% in numerous studies and up to 10% in Lx patients (usually treated with Mx), and this is something all of us who must decide between surgical options need to know. I have seen several women post here who say they chose Mx because "they never wanted to deal with this disease again," and unfortunately that is a false assumption... and one that I hope doctors are NOT conveying.
On other threads on this topic I have posted links to learned TN doctors who do not believe TN itself has a bearing on surgical choice. There ARE some medical reasons to consider Mx, but I have yet to see compelling evidence that TN itself is a variable. I try to stay on top of this, but please do share any recent studies that would suggest otherwise.
In the meantime, I will add this to the mix, for the younger women on this forum: http://www.cancer.net/research-and-advocacy/resea... . Again it's just one study, so add it to the body of research... in the end, all of us need to choose the option that makes most sense for us.
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Cocker - I understand where you're coming from on your recent post about reoccurrence. I'm definitely in the "moving on and living my life disease free" mode as well. That's not to say that I don't occasionally have scares and find myself feeling vulnerable again. I like to stay plugged in here because it was a lifeline to me during treatment and if I can provide any insight to others through my own experiences, I feel like it's my way to be able pay it forward in some small way. Having said that, in Inspired's defense, I did see some ladies asking questions about percentages and reoccurrences, so I believe her recent posts were in response to some recent questions. I, too, chose not to read about any of this either. I feel like we're either disease free or we're not. No study is going to make me have it come back or not. So, I intend to keep moving forward with my wonderful life and continue to be grateful for all of the experiences I'm getting to have. Life is good for me now, but I do remember when life was very scary, not so long ago.
Hugs to all,
Kathy
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Cocker, that statement couldn't be further from the truth. In fact, I often and usually post only of nutritional, informational and helpful information. Such as the post on April 7th:
"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!"
And a post after that with a link was to help women understand that the anniversary period can start to be counted as early as diagnosis date, according to a study. That was not to "talk about recurrence risk" that was to give them hope that they could use an earlier date than surgery or chemo, according to the study, to get them to this point sooner, further giving comfort and support - not creating fear!
I have been answering questions in regards to recurrence risk only based on an on-going conversation that was initiated by someone else asking me directly what the % rates and information of that. Anything I posted was to help those that had asked this question in this forum and was only part of an on-going discussion.
If anything, I normally don't think about it or like talking about recurrences, but I do answer the questions or join in a discussion where this has been initiated.
I really do think you have misinterpreted the entire situation and it's a shame that this has been viewed that way.
- John Hopkins Breast Cancer Center has a free question-and-answer service, and they provide answers to a wide range of topics from symptoms of breast cancer, to breast cancer diagnosis, question about breast cancer risk, mastectomy, radiation and many other topics. Ask An Expert: John Hopkins Breast Cancer: http://www.hopkinsbreastcenter.org/services/ask_ex...
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Syl, I think I read somewhere that doing that also allows some of the nutrients to unlock and further become more nutrient! What else do you put in your smoothie? I've recently started preparing a raw veggie tray on Sunday nights to get me started into the week and then again on Thursday I will replenish it. If we are to get in 5-9 servings of fruits and veggies in a day, it really does keep one super busy!
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KSteve - Thank you so much for having noticed (and mentioned) that my posts were in responses to questions asked of me.
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syl58 - what a great idea about steaming the broccoli and then freezing it. Do you use the stalk or just the flor part of the broccoli?
Inspired - I don't usually add veggies to my smoothies, but I am going to start and try it especially if it doesn't overpower the taste. I also like your idea of preparing veggies and having them at hand! And I agree that fitting in the required servings per day sometimes seems like an impossible task , especially since preparing them take so much time. I do try to eat a nice big green leafy salad each day though.
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Adagio - one benefit of adding veggies to the smoothie, is that it adds fiber, which slows down the insulin absorption rate. For the veggie tray, this is what I put on mine to start the week: English cucumber, radishes, carrots, red bell pepper, zucchini, cauliflower, baby tomatoes and celery. The time-consuming part is the celery, have to wash them twice to ensure all dirt is off. The carrots I buy ready to eat baby ones, and I just give them a quick splash. To wash the veggies, I first rinse under the faucet and then dunk them in water for a few minutes with just a splash of apple cider vinegar in it. It really helps unlock residual dirt that is left behind that you might not see and it does not change the taste of the veggies. Usually half way through the week I replenish it, and by then I restock with whatever is left in the fridge. It's usually a few less options. LOL
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I'm still recovering from pneumonia and feeling wiped out, but I have to jump in to say that I have not met a truly more positive person on these boards than Inspired by Dolce. She continues to be a true inspiration no matter where someone is on their treatment, and a wealth of information on many topics. If there's one thing she's good at its finding research or resources.
Cocker, I totally get not wanting to read about reoccurance or statistics. So I don't. But some people find it empowering. I'm convinced that only a higher power has any knowledge of what's to come. There are many lucky women who move forward every day and put their diagnosis behind them. Whether it's healthy eating/ exercise, divine intervention, or shaking your booty on the full moon at midnight, whatever it takes to keep the beast at bay (and the real beast is fear) we all try to support one another.
I was one of those women who had complete response to chemo, double mastectomy, radiation and ate antioxidants til I turned green. It just wasn't in the cards for me to stay cancer free. If people want to blame genetics, statistics, or solar flares it doesn't really matter to me.
What does matter is having a soft place to land, and these boards are it.
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A soft place to land, as so eloquently a bluebird does!
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Hey all..
rads almost over, just a week more left.
inspired: good to hear that you finally found a good recipe for broccoli!
i have come across a good article from another TNBC community which I would like to share with my friends here, just for information.
http://www.medicalnewstoday.com/articles/275535.ph...
I guess regarding recurrence etc.. this is the age of information. We TNBCs, each one of us, have come across lots of negative stats, positive stats and at the same time we have come across a good number of survivors too and a lot of them are in this community itself!
The challenge is not to get disappointed after reading those figures for recurrence, survival etc . Instead be alert and be aware as much as possible. Information never goes waste, as long as we know how to sift the right information from the wrong, to focus on the positive information and let the negative ones take a back seat and live on and what better place can be to vent out our concerns and fears and worries than this community .... where we draw strength from each other..when one gets worried, there are others who stand up and support!
Love..and hugs
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BanR - yay for the end of rads nearing! I'm fascinated by the article you posted and it gives me a bit of hope. In 5, 10 years who knows where we'll be. Praying for a cure, but accurately predicting a recurrence would be wonderful, as well.
Inspired - I love the idea of adding broccoli to smoothies. I'm going to try that!
FierceBluebird - sending you thoughts and prayers for a full and speedy recovery from pneumonia.
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Hello ladies, I have been off the boards for awhile. Been doing a ton of traveling and just enjoying life in general.
Early on when I was first diagnosed, I did a ton of researching and surfing the net for anything to do with Breast cancer and TN in particular. So I can relate to those who are frightened and searching for answers and reassurance. Fear is a terrible thing....we have all felt it. Sometimes it takes away from the simple joys of life and can harm of us physically and emotionally. That being said, I believe that every day that goes by is a day that counts in the plus column for me. I still believe that BC is a crap shoot. Either you get it or you don't, and if you do get it.... chemo/rads either works or it doesn't. Common sense tells us to live a healthy life...meaning keeping the toxic things at a minimum. And that means something different to each person...some stay away from processed food or stop drinking alcohol, some get out of a horrible relationship or stop smoking. Or like me, I quit a stessful job. BUT I still like to drink wine regularly! And sometimes have a dirty martini with a big juicy steak!
I guess what I am trying to say is that the magic word here is really TIME. The further out you get, the better life gets. I never stop thinking about BC and probably never will.
Gals, try not to get tangled up on all the stats....they won't change how things will turn out for you.
Get through treatment and ask your Doctor to help you navigate through this maze of information. Feel hopeful that you are doing the best you can to beat cancer.
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this has been an interesting dialog on all fronts; from stats on recurrences, to research articles, to emotional reactions to this information and to broccoli in your smoothies! Thank you ladies. I learn something from everyone of you. That's what these boards are for.
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From where I sit, dwelling on stats of recurrences, robs us today. Cancer is never to far from my mind, but I"ve found the best way to live is simply live. Worrying about the future takes away today's joy. Jan
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Very well said "NavyMom" - Time it is!!!! Spend it wisely!!!!
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do we all know about this about vit d levels? Vit d3levels reccommended to be at 60-90 for cancer pts especially tnbc!? Recommending to take 4000iu of d3. Also should be taken with cal/mag supplement. I have been taking 2000iu which i usually have taken prior to bc and have not changed since starting chemo. my MO knows what im taking and but has never asked questions about iu's or amounts. Will ask to have my level checked. Can they check it when doing regular blood work prior to chemo (from port on day of chemo?) if I request?
Inspired-you seem like the nutrition guru! What do you think? I will see if my levels were checked prior to chemo. I have been slightly low in the past prior to BC (of course we all probably are living in upstate ny! Not much sun!)
This is from the tnbc foundation forums. There were lots of other links to other research articles on there also.
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Lisa, yes it's my belief that Vitamin D levels should be a primary goal, in addition to the nutrition and exercise! When I was first dx'd, I came across research about the correlation with low Vitamin D and a possible link with TNBC. I remember reading an article that one Oncologist in particular ran his own data on patients he had treated for TNBC, and he found that a significant percentage had a low level of D.
I had never had my D levels checked and so I asked my PCP to run the test. It was the lowest he had ever seen, at 12! He put me on 2,000 i.u. a day, but I had researched and discovered that it takes a long time to build up D in the system, so I upped it on my own to 4,000 i.u. a day. I had it tested 9 months later by my Onc. At first, my Onc said he wasn't sure they could even test it due to some issue with trying to order it. Well, I was insistent so he took a few minutes to log into the lab vendor's ordering site and selected the test for me! This time I came in at 42. Then just 2 weeks ago I had it checked again and I was up to 61. Ironically, my Onc said that for the first time ever he had his checked, and he was really low, so he went on 10,000 i.u. to get it up. I'm aiming for D levels of 70, just based on information that other TNBC women have told me that their Oncs recommended a level of 70.
The name of the test is the VITAMIN D, 25-HYDROXY. I remember reading that it's important the right test is selected (there are a couple types of D tests) and this is the one that is recommended.
The only supplement that I have used for this is the Source Naturals Liquid Drops. I really like the drops. 5 drops = 2,000 i.u. What I like about it is the flexibility to adjust the dose. I read that if you get a lot of sunshine one day you don't have to supplement that day, and so having the drops gives me the flexibility to put in what I want into my warm green tea. Sometimes I do 10 drops, sometimes 15. You can put them under the tongue as well, it tastes a little sweet. If you do supplement I have found (and other users mentioned this too) that if I take it in the AM, it makes me sleepy. So I take mine at night in my last cup of green tea for the day.
My Onc said D will remain in the body for a long time, that it is stored as fat and even though it takes a while to build the D up in the system, once you get to a specific level it is supposed to be easier to maintain. He said it's needed to convert food into nutrients. I'm interested in your articles and will be reading them - as soon as I finish vacuuming!
-Vitamin D, Supplements
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DX 2-21-14, found lump myself, dense breasts rendered mammogram ineffective. I'm 48, about to have my 4th DD A/C chemo hit. It will be followed by 4 DD Taxol and bilateral scheduled for summer.
Curious,,,has anyone else struggled with sleep? I'm barely sleeping. Have given up caffeine entirely and increased exercise to no avail.
I've suffered from depression my whole life and now I feel the exact opposite physically. I awaken early, clear headed and ready to go. Even if it is 3:00 am
I have wondered if this is what the manic side of bi-polar feels like. Also, please share any tips for preparing for mastectomies and reconstruction. What do you wish you had known? What would you do differently? What worked?
Thanks
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Welcome Molawmom! Sleeplessness was huge for me when going through treatment. My doctor prescribed ambien for me. It worked to get me through that time. I recently went off of it and now am struggling once again to get the proper rest. Talk to your doctor about it and see if there is a solution. It may just be the steroids they have you on during treatment and the insomnia may go away once finished for you
as far as preparing for mastectomy and recon-- I am still trudging through that myself. I had tons of radiation which has made for a long haul for me as implants were just not a good option for me so I chose natural recon using my own body fat. my bmx was the first step for me before the chemo and rads. then i waited 8 months before starting to rebuild. I wish that I had not allowed the doctor to do a sentinal node biopsy on the non cancer side until after the path report had come back. Doing it along with the mast. has increased my risk of Lymphedema on that side and I also lost some sensation on that side from it. My cancer side...leftie as I affectionately call it has full blown LE. Research as much as you can for your options. Ask lots of questions and get as many medical opinions as you feel are necessary to make the best decision for YOU. I traveled to have the natural recon. New Orleans has a super hospital and center there that caters to BC patients and specializes in natural recon. explore all options. You can find lots of threads on this website with lots of helpful tips and advice. Wishing you all the best.
Maggie
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Making some progress...
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I recently started having trouble sleeping and asked my Dr. for ambian also. I was fine until Taxol. It is the days around infusion I cannot sleep.
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I used Ativan (lorazepam) for those sleepless nights. It helped stop my mind from racing with all the what ifs. I stayed on it for a year then gradually weaned myself off. It is addictive and should not be stopped cold turkey! It's great for relaxing before a scan as well!
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Inspired-thank you for your information on vitamin d. Will definitely discuss with my mo at next visit which is this Monday 4/21 which is MY LAST CHEMO!!! "No mo' chemo!!!!!". Maybe they can do the vit d test from blood work done normally on that day. Last time I ordered vit d3 I got it from vitacost and it was a small powdered capsule. (Dudnt know it was going to be in a differrnt form)I was used to the clear small capsules. Don't know the difference. I like taking with all my other vitamins in the morning, that way I remember.
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Lisa my wife was able to get her Vit D test with the routine blood work. Doc didn't even order it...she just asked for it when they were drawing blood.
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Cocker I am one of the people who asked a specific question that Dolce was responding to. I Do understand your need to be positive, and usually am. I have to say Dolce has never made me feel as down as reading that one response of yours to her. So See it can be all in our own perspective, yes? I want to know more about my life after cancer, here is where I learn more. If you need something different, this BCO forum has hundreds of threads, something for absolutely everyone. Isn't that what has drawn us all together?
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Bluebird, I hope you are stronger each day. I see a pair of your namesake bluebirds outside making their annual nest by my fence post, Spring has hit and it is welcomed. Little Bluebird enjoy the day. Meadow
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wow, we have to pay for vitamin D testing! I'm happy I did though because after 9 months taking 2000 a day, my level was at the low end of normal, so I upped it to 3000.
Debra sorry for late reply my internet was down, I usually put broccoli, or kale or spinach, protein powder, Greek yogurt, frozen fruit, a bit of honey, cinnamon and enough water to thin a bit.
As far as not being single to sleep, my onc suggested melatonin sub lingually and to keep taking it for a couple weeks to see if it would work for me. I found the very first night I slept better. I kept taking it every night until I felt I had built up a new pattern of sleeping, then discontinued . I do take it the odd night if I wake in the middle of the night and sense I'm too awake!
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