Calling all TNs
Comments
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LJ- some oncs are more nurturing and supportive than others. I think it may be time for you to find one who better suits your emotional needs. You do not need the additional stress of a seemingly uncaring doctor in addition to what you are already facing.
As for the trials- that is the way the BC game is played, and you are so right to be upset over it. For God's sake, it's your life we are talking about here. Nonetheless, there is probably very little you can do about it. Pink October is all about the "survivors" and finding a cure (yeah, right) and often, the Stage 4 gals feel very left out. I spent some time discussing this very issue on another thread in here.
However, when the subject comes to Clinical Trials and cutting edge drugs the tide seems to swing in their favor. That is, perhaps, only fair. The real kick comes when, as you are, you fall into the gray area. I totally understand your rage and frustration; I'd feel the same.
It's not unlike dental care for kids. (I realize the two are drastically different in consequences but the "methodology" is the same). It seems so wrong not to cover something prophylactic when there is a high probability of avoiding future complications caused by *not* giving the treatment. Insurance seems to want to cure the problem but not the disease. In other words, too little too late.
Take a Xanax. It's the best thing for you to do right now. "Better living through chemistry" as the saying goes. Take it to mitigate this rollar-coaster of emotions you are so rightfully experiencing.
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So sorry I can't catch up on all the post, and I don't want to freak anyone out. Just want you all to know that I am doing well and will complete brain radiation next week. Then I will do Chemo. for the rest of my life. It sucks but doable.Please pray that I win the lottery to get in on the Parp (sp) inhibitor program.
Pink hugs Lisa
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PM- consider yourself prayed for. Hugs back.
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Paulding Mom:
So good to hear you are doing well with this nightmare that blindsided you. I am in Marietta, GA and get my treatment at North Georgia Oncology Center (right behind Kennestone Hospital). THey have different offices scattered around. They have the Parp up there and are using it on a Compassionate Care basis. If you need more info, my onc's name and number, etc., just pm me. I wish you nothing but the best.
Linda
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LJ - I wanted to scream with you when I read your post. I just don't understand insurance companies!!!! Take that Xanax and maybe a glass of wine too.
Lisa - good to hear from you (((hugs))) and I'm praying that you get in the lottery.
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Ladies..we all seem to have alot going on right now...not good things...I freak out for all of us..but...you have to remember..reocurrence is NOT just for tn's..it can happen to all breast cancer patients..remember tn's have a higher rate until they are 30 months out (based on my chart that I printed off and is now dog eared and wrinkled cause I look at the stupid thing so much)..It is so scary...so dang scary.
LJ..and the rest of you..just be proactive...know your body...you guys know if something is different...be a pest with your onc...demand tests if you feel you need them. At this point we really can't think it is a pinched nerve or a pulled muscle or "nothing"..we just can't do that...and don't them blow you off..you KNOW how you feel inside.
I read on line somewhere..that if you feel good...and feel healthy..good chance is that you ARE..take that and run with it..not everyone reocurrs...but it just sucks that Paulding Mom did..I hate that with every feeling in my body...
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Lisa: (((Hugs))) to you and I will pray that you get into the Parp program.
LJ: I hope you can get the Parp also. It sucks that it is so hard to get the Parp, when it seems to work so well for TN.
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Titan's post is right on the mark. But one thing I wanted to add to it and it is mainly for the new gals just joining us and getting ready to embark upon your treatment, and that is that it's so very important that you be proactive right from the start. It's difficult when you are still in the midst of shock at your diagnose, but you must, being triple negative, make sure you are in the hands of an oncologist that is very familiar with triple negative breast cancer and its agressiveness and how sneaky it can be. If your breast surgeon does not send you for a MRI to make sure there is no small cancer hiding in the breast(s), DEMAND IT. If prior to treatment, your onc doesn't schedule for a PET scan (not all insurance will pay for it if you have no nodes), then a CT of chest, abdomen and pelvis should be done, along with a full body bone scan - DEMAND IT. This is the only way they can be sure that nothing is quietly lurking somewhere else that a mammo and an US will certainly never find. These tests prove very useful down the line should you need to have further scans after treatment as they will be your "baseline" tests. It is your right to have these tests, and I know I wouldn't want to put my life in the hands of anyone that would not do them. I had no choice, they are just part of my onc's normal protocol - and I am so very thankful that they were. Of course, none of the tests will guarantee that I never get it back, but at least I have the knowledge I didn't have anything show up prior to treatment.
I'm off my soapbox now - God bless us all.
Linda
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Linda..I had no pet scans b-4 treatment..chest xray..yes, but nothing else besides the usual blood tests and heart tests b-4 surgery and treatment..an mri was done of my breasts plus numerous mammos.. b-4 rads. I'm 20 months from treatment..do you think that I need a pet scan now? It is always at the back of my mind They just don't do that at the Cleveland Clinic...if I would have had just ONE node involved I would have had the entire tests..what do you think? I feel really, really good right now..but sometimes I freak anyway.
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Paulding Mom! I missed your post! I can't believe I missed it! Hey! You had better get in that PARP trial...can we do anything at all to help with that??? A phone number or something? How could you be denied that..just how can you? I can't stand just sitting here and not being able to help out...
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Titan- to quote a wise person I know:
"I read on line somewhere..that if you feel good...and feel healthy..good chance is that you ARE..take that and run with it..not everyone reoccurs... "
Stop second guessing that PET...
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Pauldingmom: I am so sorry and only wish I could do something. I know that this isn't the Nature Girls thread, however, the Anti Cancer book--Are you following his protocol while you are waiting for a PARP trial? This could happen to anyone of us and hearing you go through what you are going through has really hit us all very hard! Hugs! Come here and rant and visit as often as you need because we are all here for you. Sending you many good thoughts!
Titan: DCIS means you have a better chance then most--I wouldn't sweat it!
Laurajane: I already sent you a PM and realized I didn't mention the name of the book! Anti Cancer A New Way of Life written by an MD who has beat brain cancer-twice!!! Hugs!
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Sometimes I think we are all affected by this:
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So many stressful situations. I am hoping for the best for all of you.
LJ: be a pain in a$$ to whoever you need to. I am glad that you are going for a second opinion. Your well being, both the physical and the mental deserve to have a compassionate Onc. And as far as the insurance....be firm...keep calling. Let them know that you are taking names. Everytime you get a NO for an answer ask to speak to a supervisor. Keep pushing. Don't be afraid to use the big words, like NEGLIGENT CARE....then ask to speak to someone in the RISK MANAGEMENT department. That should get someone off their butt. You are a strong woman. Get what you want and need.
Lisa Hugs to you. And lots of Prayers.
Thanks to everyone for posting. This site is such a great place to come for support.
Navy
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Titan:
No, I would think you would have had problems by now if there was something there they missed. My scans were done only because my onc treats a lot of triple neg gals and she takes every precaution, no matter if it's stage 1 and no nodes. She just goes aggressive with everything for triple neg, even the chemo. What did I know back then, nada - absolutely nothing, so I am grateful for her aggressiveness. Those are the only scans I have had and I pray to God that will remain so! Any ache or pain I mention to her, she asks me would you feel better if I order a bone scan, or a PET - and then she has to chase me down the hall! The mere mention of a scan and I'm out of there. Fortunately, so far anything that has bothered me has only been for a day, and goes away. I pray it stays that way. I'm kind of like Heidi, I prefer not to know anything and not going digging for it, unless it becomes something I cant deny. Until then, head in sand and butt in the air!
I am on a couple of boards and I have become aware of how many gals come on as newbies and wonder if their docs should be doing any scans. It just surprised me that some triple negs don't get them now - just being diagnosed. I know if were just starting out now and knowing what I know now but didn't know then, I would only go to someone that was very proficient with triple neg cancer and make sure all tests necessary were done. I just lucked out with my choice of onc's.
Many of those that didn't have scans are doing just fine - as you are. Just wanted to mention it to the new gals coming on so they don't have learn about them after the fact. Certainly didn't mean to scare you or anyone else reading the post - just passing on info we learn because we've been there already.
Linda
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LJ - I agree with HeidiToo, I totally understand your rage and frustration and all the emotions. You are unfortunately in the gray area. Take a Xanax and forget all this at least for tonight. Hugs and much Love.
Vina
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"I'm kind of like Heidi, I prefer not to know anything and not going digging for it, unless it becomes something I cant deny. "
Actually, nothing could be further from the truth... I want to know *everything* but learned early on that most of the knowledge only served to scare me sh*tless.
Since then, I have learned that everything is better in moderation--*even fear*.
So, I try to maintain perspective, realism and humor.The only exception to that is when I see/hear Stage 1 negative nodes progressing to Stage 4. THAT is the *cold terror* thinking I try to suppress. I can not imagine going through that and am sickened when I hear that one of us is.
"There but through (name your entity to maintain political correctness) grace go I." Followed by a "don't jinx yourself by thinking about it" mindset. Silly maybe, but a coping strategy none-the-less.
So far, so good.
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Has anyone experienced pain in their rib cage area from AC treatment? I have pain on both sides, although much more on the right side, under the breast. I am wondering if it could be just from my digestive issues, but wondering why the rib? Does anyone think it could be something that I should be worried about? I have noticed this pain for several days now and am trying to massage every night. Very worried, girls. Could this be a sign of something? I am in treatment and just finished my 4th AC.
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lovelyface- no real answers from me, but it's late and I wanted to reach out. Call your onc in the morning; he/she is the one to really decide if there's anything to worry about. Until then, try to rest (easier said than done, I know).
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Now that I think of it though, many women do experience some bone or joint pain during chemo.
Breath... and call your onc for a better answer.
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LInda: Amen to that!
HeidiToo: You hit the nail on the head! LOL!
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Thanks ladies, although my mind is racing, as you can imagine.
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lovelyface: I would speak with your onc! Are you getting Nuelasta or Neuprogen shots after each chemo? Sometimes women have bone pain after these shots. I hear Neulasta is less painful although more expensive and that getting shot in the belly cuases less pain. Hang in there--you have all of us to help you through.
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Heidi:
I understand you post completely and did not mean to imply in mine that I didn't want to know absolutely everything there was to know about my situation. I am still amazed that in just a mere few weeks I got my PhD in triple negative breast cancer, and still study it fanatically. I just am not one of the mindset (due to fear) that would get any relief from getting scanned in any way unless I felt it absolutely necessary. Some gals get great comfort from it, knowing that all is well and their pains were not cancer related, while I, on the other hand would rather hang from a tree by my nails. I too absolutely freeze with morbid fear upon hearing one of us gals has developed problems, while knowing full well that stage, nodes, etc. matter not with this sneaky beast. For the most part, I feel I have come along way with my fear, but there is that part of me that I believe will be ingrained forevermore that holds a pocket of unbridled fear. Logically, I realize, it is what it is and whatever happens, will be. I will just have to deal with it the best way I can. Emotionally, however, I hear of another's misfortune, especially another triple neg gal, and I am instantly shot to hell.
I hate this disease with every fiber of my being -
Linda
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LRM216- yep, fear vs. knowledge; an ever-changing balance of choice. Some days I dance my way through and other days I crawl. As long as I remain upright I figure I'm OK.. sorta. (Sigh)
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Ok, now that I have finished chemo (even though I did not finish the complete regime) and have started I am getting paranoid of mets. the doctors keep saying they will check me every 3 months but they haVe said nothing about scans or anything and when I asked my onc about he said why do tests that are not necessary. What the hell does that mean. Sorry, just had to vent a little. I hope you are all doing wellk and Paulding mom my thoughts and prayers are with you.
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Just want to say, thanks, ladies, for your insightful posts over the past day. I hate that we are all going through this, but it is some comfort to know that others are struggling with the same fears and searching for some coping mechanisms, as I am.
PauldingMom: So good to hear from you, you've been on my mind all week. And what a lovely post - you inspire me with your grace under fire. Desperately hoping you get the PARPs and continue to do well. Keep us posted on your progress. (((hugs)))
Lovelyface: There is a lot of useful information right on this site for triple negatives - it's from 2008, but much would still be current. On Mx versus Lx: http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/#q20 And other issues you may be wondering about: http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/
Hope that helps. I know it's an anxious time.
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Lovelyface..bone/joint pain is very common with chemo..I think my pain came from the Neaulasta shot. My hip bones hurt, my shoulder/neck area hurt..my ribs probably did too...My skin even hurt...it was like having the flu...at least for 24 hours...I'm sure it is just the neulasta shot doing its job.
JenC..my oncs told me the same thing.about the tests...I too go every 3 months. The rule of thumb is if you have "something" new that lasts more than two weeks. I like that..if I have a pain or a twinge or whatever..I think ok..wait two weeks..usually it is gone in a day or less and I have forgotten about it by then. I still have to go every 3 months until next September...then maybe every 6 months..I hope!
Believe me..even if we don't get alot of scans..the oncs are going to keep an eye on us all for a long, long time...
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Good morning everyone. Got the results of my blood tests and my dr said I am healthier than I think, which is good. My WBC count has finally started to creep out of the 3 range and into the 4 range -- finally! My colesterol is a bit high and my TSH is quite low and my hormones are out of wack. Looks like I went into menopause permanent like
. So my dr is starting me on bioidenticals to try and balance me out. I will let you know how it goes.What I really wanted to share with everyone here is regarding Vit D3-As some of you already know, I take 8000 iu combined with Vit K1 800 mcg per day. Well, my Vit D levels came in in the mid 60 range--in otherwords I am maintaining my levels from before BC by taking this amount! Here is an article as a reminder to us all as to just how important is is to take this daily!
http://archive.constantcontact.com/fs026/1102452079631/archive/1103881486688.html
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