Calling all TNs
Comments
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Lisa wonderful news. What as great Christmas present for you and your family (and all of us here). You keep on going girl you are doing fine. Big hugs. xxooxx
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Hi Everyone!
First off, Cat, so wonderful to hear from you and your flight sounds like you are able to squeeze in a little bit of excitement. I'm glad you have some loving volunteers to help bridge the route until the trial is in Atlanta. So glad to hear that you are in remission.
And Lisa, yippee! I also thought of you all day hoping for your news to come in today, so you could go back to enjoying life. I'm so delighted for you.
I also wanted to update everyone that I too had my semi-annual surveillance today, which was a bilateral ultrasound. All was completely normal. I asked my Onc about tightness in my right implant, and he said it's not an uncommon question from women, and that it's due to the fact that my implant is held in place by my muscle, and when I workout, it flexes that muscle, causing tightening, etc. I also think it could be due to the saline implants. They fit a bit wider I think than other implants in the profile and they are a bit firmer. I have discussed with my PS about switching them out, and he said we could try that. Originally he put me in these since he said I was thin and this would be less rippling.
My Radiologist also told me (and showed me on the screen today) that there is a very thin border between the implant and rib, so that if a lump was present at any point, he said I would most likely feel it easily or even see it easily first. This discussion came about because I always manage to find a little nook or something and ask what is that little thing I feel and I try to feel and go deep. What I end up feeling is the rib bone. We were talking specifically at the 6 o'clock position, which is what I always take extra attention to, as this was the dx location.
So, in 10 days I will reach 3 years. I quoted some stats today to my Radiologist, who is very up on TNBC, and he nodded and confirmed that 3 years is a deep milestone and a definite turning point in survivorship.
I will post at 3 years so that you all can celebrate with me.
Thanks for sharing all the wonderful updates today.
Wishing you all a wonderful holiday!
xoxo
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Simple - Yes, Dr. Ingrid Mayer is my onc at Vanderbilt. I am there on Tuesdays. What days do you go? Small world heh?
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Inspired, So lovin' your post!
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inspired, love your post also. Mr RO is not involved much in my after care. I will not see him again until next aug, I yr since finishing radiation. Saw for 3 mo fu in oct then not again until next aug. He really never did much with me during rad visits. My mo is much more involved.
3 yrs!!!! Congrats! And thanks for all your helpful info to us on this board
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Lisa, fantastic news!!!!,
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do any of you follow Annie Goodman? She was TNBC ambassador and she used to work for Fox News. She passed away today, and her colleague ended his news segment with a tribute to Annie, but went on to describe TNBC as a lethal type of cancer where "recurrence is all but inevitable." I now want to throw up. I was diagnosed in Nov 2013 at 33 years old. I've done all the treatments and trying to get back to "normal." Watching his news segment made me literally feel like I have no chance of seeing my kids grow up =(
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ufandi=Don't know anything about your TNBC. You did not post. She was dx with metastatic stage 2B BRAC +. My MO told me he doubted mine would ever come back and he has lots of patient's with TNBC that do not have recurrences.
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Ufandi, I hate listening to media about TN! I have been down in the dumps a lot with my issues and its hard hearing this stuff
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Ufandi: There is a lady who is on here and already 28+ years out by the name of NoniJones you can read about her. She and her daughter are doing well. Additionally, I have a list of long term survivors on a note in my file cabinet in my medical information file and they are all here and doing well. Some are now past 8 years. In one study, (recalling from memory) there were no reccurences after 8 years. Of course, that's just in the study and a small sample of the population, but it demonstrates that TNBC is very survivable.
Are you sure they said lethal, but not "can be lethal" or perhaps they were referring to metastatic disease as being lethal. At any rate, it's completely possible in many cases to live out a full long life, and according to the TNBC Foundation, (I'm posting the link and the excerpt here), very few women will recur.
http://www.tnbcfoundation.org/survivorship.htm
"Most women with triple-negative breast cancer never have a metastatic recurrence or a new cancer. But you may be overwhelmed by worries about breast cancer returning. Birthdays, anniversaries and holidays can bring these emotions to the surface, as can news about a friend, family member or a famous person's diagnosis. Your fears may be stronger before you go for follow-up appointments and when you wait for test results. To lower your anxiety, share your fears with a trusted friend. Try yoga, meditation or other activities you enjoy."
As others mentioned, my Onc also has many longterm TNBC survivors, and in fact, he said when someone has recurred it is usually within the first 18 months. He also stated that he was not at all worried about me in any way. I wonder if the wording was just miscommunicated in the program that you watched. If I can find the clip onlined I will review it and see if they said specifically it was a lethal type of cancer. I have read online some older articles that TNBC can be deadly, but many of the references to that were established because quite a long time ago women used to find TNBC in a quite late stage or progression, which had lent to the theory that it was so deadly. Since that time, with the advances of treatment, earlier detection and the theories about fat and low sugar, the landscape for survival is quickly changing for the better.
Focus on the things you can control and you might find yourself with less anxiety. I will say, I have done very well, but I'm very difficult to live with if I don't get my exercise in. Once that's in for the day (I call it being returned to the general population) I find I can then go the rest of the day without worrying about things and with making the right choices. But if I don't get it in, I will worry. So try finding something constant that you can rely on to take the edge off.
If anyone is interested in joining the "Let's post our daily exercise" group, here is the forum. I have found it very helpful to keep on track. There is a lot of encouragement and support on there, and it might help some of you who are ready to transition into a moving past bc group. At the very least, you will see that many are longterm survivors on there, and everyone does some form of exercise routinely. It's not a TNBC exclusive group, but I have seen some TNBC girls on there. It's a great forum for feeling normal and healthy again. I hope many of you will take advantage of it.
Here is the forum called: Let's Post our Daily Exercise: https://community.breastcancer.org/forum/58/topic/741082?page=766#idx_22974
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I found the article. What a disappointment that the journalist did write "all but inevitable". I don't believe that statement for a second and neither does my highly trained Oncologist.
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Here is the link with the article. You can then go to the column on the right and go to Neil's Facebook page.
I encourage everyone who is offended by his callous remark to react and voice your opinion on Neal Cavuto's Facebook Page. I see that someone has already done so, I think we should all follow suit. I am not on Facbook, but may have to consider joining now. At any rate, if you have stats, information or anything, I think Neil needs to be educated on TNBC.
http://nation.foxnews.com/2014/12/17/always-fighti...
Here is Neil's direct address if anyone wants to contact him. Cavuto@foxnews.com
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Ufandi and for anyone else who is now worried after hearing Neil Cavuto's comments, here is some information that contradicts what Neil said about a recurrence being all but inevitable. You can read this if you want and interpret it how you see fit. http://annonc.oxfordjournals.org/content/23/suppl_...
" In addition, a pattern of locoregional recurrence in patients with TNBC was characterised by a rapidly rising rate in the first 2 years following diagnosis, a peak at 2 to 3 years followed by a decline in recurrence risk over the next 5 years, with a very low risk of recurrence thereafter. Unlike women with other types of breast cancer, the great majority of women with TNBC who had no evidence of progression after 8 years did not have any recurrence thereafter. These findings are confirmed in a study by Wang et al. [6], who conducted a retrospective analysis of 835 node-positive breast cancer patients, including 141 patients with TNBC. After mastectomy, an increased likelihood of locoregional recurrence was seen within the first 3 years after treatment, but not in the following 3 years, when compared with other breast cancer subtypes. "
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InspiredbyD= I emailed M Cavuto. I asked him to please get his facts correct before he goes on national TV. I cut and pasted from your post the study done from annonc oxford. I ended my email by thanking him for making it easier to sleep at night.
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Inspired, thanks for the info.
Eileen, well done!!!
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Wow. Jennifer Griffin of Fox News is TNBC. I imagine she will be in touch with her colleagues
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I also e-mailed him, and included information that I thought his insensitive mind could absorb, and I ended my e-mail with the following 2 paragraphs, followed by my name and phone number.
"I am calling for a clarification or retraction quickly. You have greatly impacted the positive health and well-being of several women. Women who must know the current statistics and not the overblown journalistic non-supported statements being made by journalists who have not identified sources, medical journals or periodicals that support your statement.
Please call me so we can discuss in further detail and define a solution that would offer current information and hope to survivors, not a picture of gloom. I don't believe Annie would have wanted this any other way. She might have been a good friend of yours and Producer for Fox news, but above all else, she is a TNBC Sister, and she is loved and supported by our entire community. You owe this to her and to the community to make this right.
I will be waiting for your response."
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Thanks Eileen and Inspired! His words have haunted me literally all day today! I haven't felt good in a couple of weeks because of my bowel and stomach issues, thinking I have liver Mets or something and his statement really made it worse today. Please keep us posted if you gals get a response. XOX
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Luvmydobies=I will. Doubtful I will hear back. I will post his response if I get on.
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Hello everyone
I am just posting to send greetings from all of us in the UK.
Take care of yourselves and have a good Christmas and a Happy, Healthy New Year. Do not take too much notice of statistics and negative information. I have now reached 9 years and 6 months since diagnosis.
Sylvia
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Thanks Sylvia! Glad you're doing well! XO!
I do have a question for you ladies. Who do you all talk to about getting a possible scan? Is it your PCP, Onc or who? I spoke with my psychiatrist yesterday and she is close friends with my Onc, but she thinks I should discuss my issues with my PCP first and if she thinks I need a scan then she is to call my Onc. I am just tired of having an upset stomach daily. It's been going on for a couple of weeks and I'm to the point where if I don't get a scan to rule out the worst I'm gonna continue to obsess about it. The psychiatrist told me my Onc won't do a scan just because I want one. Ugh. I don't want to go to the ER and be exposed to all the germs up there either. My GI doc can't see me until January. My appt with my PCP is Dec. 29th. I may just have to see if she will refer me to a different GI doctor. I just don't know what to do since so many things can cause nausea, diarrhea, bloating, etc. Ugh!!Thanks for any advice!
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Just had a look at the article some of you are talking about. The guy is a pure uneducated fool, as simple as that.
He states "That something was triple negative cancer - a particularly virulent form of cancer for which treatment is limited, and recurrence is all but inevitable."
Lets get some facts straight -
1) The majority of women that get TNBC will survive and will not have a recurrence.
2) Treatment is not limited - the only treatments not availiable are hormonal therapies -chemo works significantly better for TNBC and diet and exercise post treatment can also be almost as effective as hormone surpressing therapy.
(If you want some recent data, I refer you to a post I made on Wednesday (https://community.breastcancer.org/forum/72/topic/757916?page=189#idx_5662)
Here is the post below - ignore Avastin making a difference or not, its the survival rates to look at.
https://www.clinicaltrials.gov/ct2/show/results/NCT00528567?sect=Xjci0156#outcome13
This was just sent to me, its some info on a clinical trial being carried out by Roche on a drug called Avastin, whcih blocks angiogenesis (growth of new blood vessels). Its called the BEATRICE study and is examining Avastin being given alongside chemo and then afterwards. The trial began in 2007 and is coming to an end next year I believe.
This is for TNBC - so all the data is on women with TNBC.
If you click on the link it gives the study results to date. What I've just found interesting is the numbers being thrown up. Now I may not have read this correctly, so will take some time to go through fully, but if you scroll down to "outcome measures" (blue arrow, text boxes) there are some outcome measures you can view.
Look at outcome measure 2 - No. of patients with invasive disease free survival events. This has a follow up of up to 49 months (just over 4 years), look at the percentage of participants without events - 85%
Measured outcome 6 - Overall survival. Again a follow up of up to 49 months. Percentage without an event over 90%
The study still needs to end, but those are impressive survival figures. Remember a lot of the studies published on TNBC are with old data, with older treatment regimes. This study began in 2007 and won't be published until at least next year. But compare these figures to older studies, these are even better survival odds!
I will email him personally and suggests he does some research before he writes such complete rubbish.
Hugs to you all
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Thanks all of you for the words of encouragement and studies supporting the fact that essentially, that news anchor is a moron. Those words threw me into a whirlwind of emotion I haven't felt since diagnosis. A lot of my fear is that the proliferation rate of my cancer was extremely high, like 88%. The cancer grew extremely fast and being 33 I wasn't even going for mammograms yet. The only reason I knew anything was wrong was because I had pain. So when they found it I already had lymphnodes involved. I had chemo first which shrank the tumor by 95%. I have been pretty much going about my business since all my treatment ended in August, but Annie passing away and the reporter's callous remarks got me riled up. I absolutely loathe feeling like every ache and pain is cancer. It's consuming, unhealthy, and downright unpleasant. I have a husband, 8 year old boy, 5 year old girl, and 2 doggies that need me. Apparently I have a BRCA1 mutation that thinks it needs me too.
~Andrea
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Andrea,
Don't let poor reporting bring you down. It sounds like you're doing really well. I can't imagine what you wonderful ladies go through every time you get an ache or pain, you certainly do not need negative press!
My wife is also 33 and currently pregnant going through chemo, if she read that comment it would scare her like mad.
Hope you feel better now.
x
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Luvmydobies= My MO odered a scan for me because I had swelling in my legs. He wants to rule out any further evidence of disease. My came back 100% clean. Also,just had my Vit D level drawn as a low level can be a precursor for breast cancer. That was alos done at my MO office.
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Thanks for the info breastcancerhusband! Tell your wife to hang in there and congrats on the baby! I was 36 at diagnosis and it's hard especially when you're young!
Andrea, take comfort in the fact your tumor shrank so much. The reporter on the news obviously didn't have his facts straight. I'm having issues with constant worry too. You can see my previous posts. One thing that concerns me is I had surgery first so I have no idea if mine responded to the chemo or not. At the time of diagnosis almost two years ago my Breast surgeon told me survial rates were almost the same if you had surgery or chemo first so since I was in a hurry to get the tumor out I had surgery first! But I can't go back and change anything. We have to take each day as it comes. Hang in there! You'll be alright. XO
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- Thanks Eileen. My Vitamin D was low last January so my PCP told me to take 2000 IU's of Vitamin D everyday but she said we should recheck it this January. I had no idea it was a precursor though?!! Ugh. What kind of scan did you have? I'm glad it came back clean. I don't know why the #1 is before my response. Lol!
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Luvmydobies with your symptoms could you perhaps be suffering with Crohn's disease and not where your mind keeps going!! So many foods, which act as a poison, can upset the bowel if you have Crohns but I believe Simple can help you more there as she suffers/suffered with tummy troubles. Diet plays a large part with symptoms but they can be controlled. If you haven't discussed this with your doc it might pay to. Hope you get some help soon as it must be very debilitating to suffer like this everday.
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Andrea, I'm wondering if the person who should be notified, hounded, pressed, pressured, challenged, etc. is the editor of the program, a la the "Susan" story at the fraternity (can't remember where). Some one higher than the reporter needs to also be responsible for what is reported to the public unless it is presented as an editorial. Jan
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Cocker, my GI doc tells me it's not Chron's due to the biopsies he took from my endoscopy and colonoscopy last year but I've read it is very hard to diagnose as it can occur anywhere from the mouth to the anus. I worry about Chron's also due to the medications you have to take for it because with my C Diff history I'm not supposed to take steroids or anything that will disrupt my gut flora, especially antibiotics. CDiff has left me with PTSD as well as my Cancer has too! It is debilitating. My GI doc wants to test me for SIBO but I can't do the test as long as I have diarrhea! It sucks! I eat bland but that doesn't seem to matter much. I know stress makes everything else worse too. Ugh. I'm supposed to leave Sunday to fly to TX for Christmas and I'm scared to even get on a plane because of this.
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