Calling all TNs
Comments
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Thanks HeidiToo!
Kelben: So sorry to hear this. After reading what Heidi posted maybe getting immediate PT would be helpful to avoid further complications of lymphedema or postponement of your surgery. Hugs.
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MBJ, my docs at Sloan Kettering, and my local onc, both gave 80% chance of surviving. Who knows...but I like their statistics better than yours
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mitymuffin- MSK, as I recall and my local med onc gave me 87% (with chemo/rads), so I'm with you--- I like those stats better!0
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Moe - I had weekly Taxol and struggled with neuropathy. I thought neuropathy meant numbness, but was told my my dr that the pain in my toes and fingers was from the neuropathy. There isn't much you can do if that is what you're starting to deal with. However, make sure to talk to your onc about your symptoms so that he can keep an eye on you and give you medication for the pain if necessary. I also had terrible pain from the Taxol and had reached the point that I couldn't even stand to be touched. I didn't have black spots on my nails, but did have white patches and ridges. I took extra care of my nails and kept them short. The emotional ups and downs are like the others said, they come with the territory - the steroids give us highs and lows along with the emotions we have to deal with from the dx and treatment. It'll get better.
Mitty - Yes, I was very tired. I fought it, but I was tired. I would come home from work, fix dinner and go to bed.
GO SAINTS!!!
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MBJ - No, I am not saying that this woman's was basal-type. We don't even know. And yours and mine, being dumb-bell and barbell, I am not sure if that is basal type or not. I tried to search but could not find anything that said that it was basal-type. Like LRM said, the Pathologist has to determine that through another test or something, but they sure don't put that on Path reports, whether the tumor is basal-type. You are right that Angelsabove was BRCA and that is more aggressive. So far, I have felt that this cancer which was in my body was a mistake or something, it just hit me at a time when something was not right in my body. I can't ever imagine it coming back as I feel my body very strong and healthy. Actually, my med. onc. punched in all my information on "Shared Decision Making" at the Adjuventtherapy.com website and told me that if I did the third generation chemo (which I have finished), then I have a 77% survival rate.
MBJ dear, you have such a wonderful spirit, I have a feeling you and I will be here for a very long time. Let's meet say when we are 60? - that would be another 8 years for me........What say you?
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Jenn3, Yes, geaux Saints! (I'm a Tulane grad and lived in N.O. for years.)
Lovelyface, if you don't mind sharing the info, what was your chemo regime? I'm unfamiliar with the term "third generation" chemo and curious what it is.
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I encourage you to take a few minutes and view the video on this link. It's very compelling. I just posted it on my Facebook status, too:
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Lovelyface: I am so sorry to hear about the lady you wrote about. In some cases, but please remember and this is so important, that it is not only us (TNs) that can have it happen so fast, many hormone positive gals have the same thing happen too - and they have more options than we have after the initial treatments end. I think it's just one of those scarey things that happens to some of us unlucky ones - that it just seems to fire through their bodies - with nothing that will stop it. Its so tragic, but not the usual. Some one on the TNBC board did go back and request that the test (whatever it is called ?) be done to tell her what type of TN she in fact had.
I decided I wanted to do this as well,and discussed it with my onc. She wasn't in favor of it (they save your tumor blocks for 20 years in most path depts.) and we got to talking about it. She began by asking me what I felt I would gain by knowing this as at this particular time - my treatment would not change a bit - it would be the AC&T or the TAC or T&C (those were my initial chemo recommendations by her). Ok, I understand that knowing would not really change anything about treatment. Then, knowing how paranoid about this damn disease I was back then (I'm a little better now, lol!) she felt that if by chance I found out that I had a true basal and not a basal-like subset,that I would drive myself even more crazy than I already was in assuming that my treatments were going to be resistent to the cancer, which does sometime happen; however, that happens with Hormone positive gals too and their cancer is always luminal, never basal, otherwise they'd be triple neg and not hormone positive. The more I thought about finding out, the more I realized I would in fact be more depressed and more pessimistic with truly knowing. Not knowing if I had the type that MIGHT be resistent to the chemo would injure me more than educate me - so I told her no, I was not going to pursue having the tumor block tested.
So, in the end I don't know whether I am true basal or basal-like and I really am better off for not knowing. This of course was my decision and the best one for me. Some gals might do better by knowing exactly what type of triple neg they actually are. I do think eventually they will probably test for that on original surgical biopsy as standard form; but right now - what else do they have for us anyway? Nothing but what we are presently given. Plus, there are many gals that know they are true basal, supposedly the most agressive all TN cancers, and are many years out and doing just fine.
I've said it before, and I repeat it here. I honestly think the whole thing, from diagnose to treatment and then onward - it's all a roll of the dice. The moment we are diagnosed, I think the only thing we can do is the strongest treatments available to us, suffer through them,and suffer we do, and just have faith that you've done all you could and will beat the beast forever. Otherwise, we will surely drive ourselves insane.
Hugs,
Linda
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Hey LovelyFace: If I live another 8 years - I will be almost 71. If I can reach the point of not being afraid of dying of this TN cancer, but old age instead, I'll buy a ticket, fly out there from Georgia and meet with you and MBJ too!
Linda
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My onc also gave me 88% chance. 30% chance of reocurrence if nothing was done (chemo/rads)..said that chemo took off 15% and rads 3% which equals 12%
That website I gave you guys talks all about basal cell tn and etc..here let me try to give you the website again: www.Med-IQ.com/a519.
or try a search Key Research and Findings in Triple Negative Breast Cancer
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My onc gave me an 80% chance... 20% chance of recurrence if nothing done. Chemo plus ooph brings me to about a 92% chance of never hearing from this beast again, so pretty much very close to a lot of what your onc's are saying to you guys too. I am BRCA2+ which is why we gotta do the ooph. My tumor was determined to be 3 mm. No clue if it was basal like.
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mitymuffin, my third generation chemo was 4 X AC (Adrimycin), every two weeks, and then 4 X Taxol, every two weeks. A total of 8 treatments, two weeks apart. This is called dose dense. Hope this helps.
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LRM216 - Thank you so very much for your post. I now totally completely agree with you. I wouldn't want to know whether I am a true basal or basal-like, as now that I think, I do agree that I would drive myself crazy, and probably make the cancer happen. I do believe in mind over matter, I think we have the ability to make negative things happen by thinking that way. Although some level of curiosity is there, I think from this point on, I will just not want to know. Maybe this is why my Med. Onc. was grilling me, saying "why would I want to know" when I wanted them to test some more of my blocks. I am now afraid that I asked them to test. I wasn't asking them to test for basal stuff, just that if there was more positivity of hormones, so that I would feel that it was worth taking aridimex for 5 years. My results would come out next week. I am now hoping they won't tell me about the basal type situation.
LRM216 - You have a real good head over your shoulders, thanks for sharing your thoughts, it greatly greatly helped me realize how I would go nuts if I knew the real status of my cancer. Each day I learn something more and more. Your analysis helped me a whole lot. I am just gonna stop thinking about this basal thing once and for all.0 -
Lovelyface: What a great thing to meet up in 8 years!!! That is a great plan. I happen to know that I do have the basal type and after reading a bunch, which I will share, only 10-15% of TN's are not basal types!!! But according to what I just read, if your body responds completely to chemo, you have a very good prognosis!!! I like your odds and since I had a great response too, who knows, I may be around another 50 years, lol!
80% I prefer those odds, too!!! I forgot I received the lower odds from my former BS who kept telling me I was going to die. Lets prove him wrong, okay girls?
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I was reading this tonight from the last TN conference:
LBBCtriplenegative0902.pdf 166.45 kB PDF File
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Heidi, was that study saying all seromas increase your risk of LE, or just 'symptomatic' seromas that require draining? I had seromas after both of my MXs, and my surgeon kinda blew it off and said not to worry about it unless it didn't resolve within a few weeks to a month. And the first one did resolve without intervention. Now I have another one from my latest MX, and he said the same thing. Should I be concerned?0
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I know lots of us are doing the diet thing but I do want to share an excerpt from this reading:
Intensive fruit-and-vegetable intervention didn't make a huge difference for reducing risk of recurrence in any type of breast cancer.[This result] may, on the surface, seem discouraging. But more research has been published since then. In 2007, a study was published in the Journal of Clinical Oncology http://jco.ascopubs.org/cgi/content/abstract/2 5/17/2345] that was really encouraging for women with all types of breast cancer. While the very intensive fruit-and-vegetable intervention alone didn't seem to help, this [new] research showed that women who had a moderately high intake of fruits and vegetables - in other words, at least five servings a day of fruits and vegetables - coupledwith 30 to 40 minutes of moderate-intensity activity a day, six days a week, had about a 50 percent reduced risk of recurrence.
The exciting thing about this [finding] is that the reduced risk of recurrence held across all typesof weight categories. Obese women, or overweight women, [had a reduced risk of recurrence] if they ate the five servings of fruits and vegetables a day and got exercise, even if they didn't lose a pound. In a way this [finding] is encouraging, that you don't need to "go crazy," so to speak, and focus only on eating nothing but carrots and celery. It turns out that moderate diet changes along with moderate regular physical activity seemed to be verybeneficial for women with a history of breast cancer.The takeaway message is that we need to focus on a low-fat diet, we need to focus on getting in a lot of healthy foods, but we don't need to beat ourselves up and struggle to get in 15 servings of fruits and vegetables a day. We also need to get regular physical activity. This is probably really important for triple-negative breast cancer because,as Dr. Harris mentioned, we're now seeing research looking at insulin as a potential, important way in which we might be able to help treat and manage TN breast cancer.
MBJ-Unilateral MX with Fat Grafting + Implant on natural side to match
Diagnosis: 9/16/2009, ILC, 3cm, Stage IIb, Grade 3, 0/2 nodes, ER-/PR-, HER2-0 -
hey there!
Just wanted to post a bit abt recurrence:
Stage I & II have a 40% chance of recurrence with no chemo. Doing chemo cuts that risk at least in half.
Regarding basal tumors, I struggled with wanting to know EXACTLY what I had when I was 1st dx-ed. I ended up letting that go... My onc and I talked about it and knowing wasn't going to change my tx. I was already doing the most I could to fight. Do I still wonder? yeah. But, I'm pretty sure I wouldn't have been happy with what I heard anyway...
xxoo
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I ready to meet in 8 years also...i want to meet such wonderful ladies who make me smile!
Just wanted to clarify about my fingers, I don't feel tingling, just they are tender at the tips...I will let my onco know tuesday..my list keeps getting longer....lol
Has anyone also noticed little red dots on the skin after chemo..Ive always had a few, but ive noticed more in the last few days...
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Lovelyface, thank you for the information on your chemo. I also had DD AC but I had 12 weeks of Taxol (and Avastin because of being in the trial). I like the idea of it being "third generation" chemo.
LRM216, you have a wise oncologist. It reminds me of when I took a very pessimistic article in to my onc and asked her about it, and she just looked at me and said "what good does this do you?" and I promptly threw the article in the trash.
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MBJ: Your former BS was such a complete a$$ to ever tell you that you were going to die! Thank God he/she is a "former" BS! As long as our chemos respond to treatment, which most of TNs do respond, we have a more than fighting chance of beating this crap. Unfortunately, some of us will find through our treatments that we had the unlucky choice of picking one of the few doctors that are doom and gloom and mentally destroy us - the only remedy for that is to run as fast as our legs can go- away from these idiots.
Mitymuffin - I think I was fortunate in choosing my onc. She's a warm compassionate woman that while knowing the seriousness of Triple Neg, doesn't look at it as hopeless at all. I like that she's also concerned with my state of mind, which so far I think has given her more of a challenge with me than the actual disease! She knows how fearful I am of this TN, yet she always manages to soothe me and calm me down. I keep trying to convince her that I would be even better if she would let me move in with her! Lol!
LovelyFace - I agree completely with your post. It is what it is - and we are all doing/did all that we can to kill it in its track. Just have to move forward from this point on looking up and not down. I still wonder from time to time about it too,but just try to push it out of mind when I do. It's getting easier. Time helps so much - you will get there, I promise!
Titan - still couldn't open it - will try googling as you suggested. Thanks.
Riley - I had a large lumpectomy - went from one side of my breast, up and over the nipple and back down other side of breast to sternum. Damn tumor was 5 cms. below the nipple so I got this "bat wing" procedure done. Then needed a complete re-excision of it two weeks later and thought the thing was never going to heal (it did and healed beautifully - can't even see a scar!). But I too had a small seroma which was there on my 6 month mammo. They did a breast mri to be sure (that was a scarey time!) and it was a seroma, thank God. My BS would not drain either, said to let it absorb naturally,which it did. No signs of LE for me either, thankfully.
Hope the weekend is a great one for all of us.
Edited to add: Moe: the tingling in the fingertips is neuropathy. I got it from my chemo too - just in all my fingertips and all my toes. Got it with my first Taxol and onc didn't like that I got it so quickly, so she switched me to Taxotere as it is a bit more gentle with neuropathy. It never got any worse, but you need to mention it to the onc so they can watch that it doesn't get any worse. I am 1 yr. 4 months out of chemo and I still have a bit in my toes. doesn't hurt at all - they just sometimes feel like they are numb. She said it could still go away, or may remain like it is. Guess it's the least of my worries.
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New drug shows promise in breast cancer combat
http://www.wfaa.com/news/local/New-drug-shows-promise-in-breast-cancer-combat-113113749.html
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LRM216- we appear to have oncologists with a similar approach. I was also initially wanting to know the "basal-like" vs. "true basal" pathology but am glad I did not request the additional analysis. MSK does not routinely test for it. I totally agree with the "don't go looking for more trouble" attitude--- especially when there's not a d*mn thing you can do about it anyway.
riley702 - sorry, I don't have an answer for you. I just post stuff that I think gals in here may want to hear about for additional knowledge. I wouldn't beging to try and interpret it. Truth be known, I find I am skimming stuff more and more and reading stuff less and less. I think I've reached my quota on all things TNBC. Time to move on IMO.
Heidi (sitting by the fire at home <eating some chocolate> after shoveling the walks, filling the bird-feeders and mucking out the stalls)
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u dont need a diet lol
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Chocolate is the cure for anything!!!!! As long as its in my house i am content!!!! sort of like my diet pepsi (even thou i have not taste for them now!)
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LRM: My former BS was and is a complete A$%^#%*! The good news is I no longer go to him!
HeidiToo: I hit my threshold awhile ago but the post that I shared recently seemed important to share as we all have been a bit afraid lately and I needed to reassure myself that I am doing all I can.
The good news, as long as we excercise, eat alot of vegis and fruits and keep the fat intake down, it doesn't matter what we weigh as it makes no difference in our outcome as far as TNBC goes. Also, if our tumors completely responded to chemo, we also have a really good chance of surviving, too. So for those worrying about whether they did all they could, or if they aren't doing enough now, these things are very doable. Now if I can just get off my a#@ and do it, lol.
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MBJ:
As soon as you manage to get yourself off your A$$ - come pull me off of mine! lol! (oh, and please bring the veggies!).
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Just checking in. I've had a rough week emotionally
. I was feeling so positive, and now I can't seem to stop thinking the worst. I've had a great response to my chemo, but I seem to be focusing on the worst case scenario - I keep finding little bits of tumor and worry that it has figured it out and is growing. And of course, my Oncologist will tell me to "STOP FEELING YOUR BREAST." Did anyone else get obsessive about it? I KNOW it is not helpful, but ugh, I can't stop. I've updated my signature line, because I really think I'm a IIIa, as much as I'd prefer to be a lower stage.I've made myself go and read the survivor threads, which helps. I love reading about others who have beat this monster.
Would antidepressants be a good choice? I've never been clinically depressed, and I feel this is obviously situational, but I'm not sure if they'd help? Any advice on that would be appreciated.
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Suze35: I can so relate to what you are going thru. I've had a rough week too. I went to see my doctor wednesday hoping that my node would have shrunk but it didn't. I just have 2 Taxol to go so I don't think it has time to shrink anymore.My doctor can't tell me if there is still active cancer in it but he thinks it feels like a metatastic node. He is positive on the outcome of it all after my surgery and radiation. He told me that even if I do not responde 100% to chemo, my chances of NOT having cancer again are very good. I know I should believe him and be happy about what he tells me because he is the top breast cancer doctor in Quebec, but I am still freaking out about my node. I start all my pre-surgery test ( breast MRI +++.....) in the next few weeks. I should have my surgery mid february. I am still not sure if I can keep my right breast because I have 3 cancers in it. I should know when I meet with my doctor on the 27th, after all the tests. I've been thankful though that even on all the chemo, I've been able to take care of my 5 year-old son everyday. It's his last year with me before he goes to school so I am VERY happy that he could stay with me all the time. He makes me want to fight this thing with all I've got!
Take care.
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Suze: Hi there--I was reading your diagnosis and I am confused about the 4/0 nodes. Does this mean you have 4 dodes affected but they havent' done surgery yet? There are many of us who end up going on antidepressant and although I am trying not to, I may end up having to, too. There is a thread called "Great Saying about Depression" that you might want to go to. You will find much support and many of the women there are on antidepressants. Also, the might want to ask your Onc for a referal. Hugs.
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