Calling all TNs
Comments
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Lisa and Char: I do not think it is common to have PET scans in the beginning, especially with early stages. As for later, it seems to be based on a combination of stage and doctor . Just in talking with others, I have seen that many later stage ladies are getting at least yearly PET scans. In my case, it spread super fast in scans just 3 weeks apart and moved me from stage I to IIIA (totally freaked out my surgeon at the time). Since I had to have surgery first (opininons were that removing the internal node before it shrunk from chemo and couldn't be gotten anymore was more important) and delayed chemo another 3 weeks, I have just been concerned about what any cells left did during that time. Hopefully chemo killed them, but I just won't feel confident until I get a clear scan.
lovelyface: That sounds exactly like the doctor I just fired. Sounded totally heartless! I hope your scan goes well and I had a bulging disc in my neck removed in July that felt like what you are describing. Massage would reduce the pain because when the muscle relaxed it would take some of the pressure off the disc and nerves. If your onc can't get it approved, maybe he could refer you to an orthopedic doctor. That's who found my neck issue (after 3 neurologists failed). If your CT was clear, they would still have to do an MRI to see about the disc, so maybe that is why he is trying the MRI again. Hang in there..we're with you. (((HUGS)))
Sugar: BC/BS is Blue Cross/Blue Sheild insurance
Lee Ann
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I had genetic counseling at a cancer center and they were the ones who submitted all the information for the claim. They would appeal the decision for me but I just let it go.
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Heidi:
I have BC/BS (of Neb. as that's where my home office is located) and although they have been wonderful in what they picked up - never had a prob with anything, other than the BRCA test. I spoke to many people up the ladder chain, and because I was 62 at diagnose, no history of breast cancer on either side of family - they would not do it. I haven't checked lately, but I'm thinking it's the same. I mentioned I was TN, but the "over age 60 with no history" knocked it out for me.
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Lovelyface,
I'm sorry you are going through this - you must be feeling terrible anxiety and your oncologist's comments certainly didn't help things. The only thing I can add is that it is so possible that it is some type of degenerative thing going on - when I had my bone scan and CT scan it showed arthritis and degenerative changes in my neck. I don't know how old you are, but my PT said it is very common in 40s and older. I am almost 51. Here is a link to Pat Prijatel's wonderful blog, "positives about negatives" with a posting about brain mets - out of 679 patients studied with stages 1-3 (and these were patients from 1980 to 2006 so many of these were not initially treated with taxanes), more than 90% did not get brain metatasis. Over 12% of these patients did not receive chemotherapy to begin with.
http://hormonenegative.blogspot.com/2010/01/brain-metastases-more-common-in-tnbc_13.html
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Linda- hugs to you and strength with all that you are going through. I just can't begin to imagine how you get through what you have. Your strong positive presence on this thread is admiral. My shoulder is here if you need it. I hope your day has been better.
Anandagram- get the BRAC test done before you decide to get your ovaries removed. I pray that you don't get mets but from personal experience and others I haven't seen TNBC automatically go straight to the ovaries. I remember having similar thoughts shortly after I was diagnosed. There are ways to fight for everything including this test if your insurance won't cover it. It can be a long tough battle but there are ways of getting things done. I'm lucky to have an oncologist that really battles my insurance company regularly. She actually makes the calls herself (which is unusual) if necessary. It's called a peer to peer. Sending positive thoughts your negative on the test.
Trace- I'm saddened by your loss of insurance. Is it possible to get state coverage where you are?
Sugar- great to see you too. I hope cancun was fabulous. I've always dreamed of going somewhere like that. I am going to get my passport application in this week. I've been saying this for years but I'm really going to do it.
Titan- too funny! I love it when you share these stories. Is anyone else talking to themselves more, I mean out loud! I find myself doing it all the time " let's see what did I walk in here for? " ... "oh, that's right, I came in for etc...maybe it's just too much alone time.
Inmate- have you tried Melatonin? I have scary dreams on it but MBJ and others swear by it for helping them sleep. It's also supposed to be good for us TNBC's. Not sure about the conflict with chemo though. Just 4 more days till hopefully your LAST chemo.
Msjas Welcome
Leeann- NO! You are not crazy. The best thing I did was change to my current oncologist. Sure I'll complain at times, we have to stay on top of our own personal situation at all times, but I am sure I probably wouldn't be here today if I had stayed with my first one. So many of these gals on this thread suggested I get multiple opinions from the get go but I felt scared about doing that. Once I did, and I got lots of different opinions from different once once I decided to switch. This is your life! Take it by the reins and take control as best you can.
Lovelyface- I can understand your fears which isn't saying much. Again, i hope you call tomorrow and push for a scan so you can hopefully rest assured. I truly hope it is stress and your all knotted up. Acupuncture can relieve that. Man oh man I hope it isn't anything serious. Hugs to you during this time of terror.
In case anyone didn't notice I feel good today! Yahoo! Well let's just say, better. This makes me happy because this means I'll feel even better tomorrow. It's nice to have a full day of feeling better before we do it all over again. I cherish what I call my good days as I'm sure you all do too! I didn't need any nausea pills and I may even paint a little this evening. I feel happy in my heart that I'm here today with a smile on my face. My smiles go out to all of you.0 -
Has anyone heard from MBJ?
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Laurajane - As always, your compassion and the time you take to address our issues is amazing - thanks so much.
Sher
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Lovelyface--so sorry for this stress on you...hopefully a disc like someone said.
I have BCBS of Florida and It has been a nightmare. They did not pay claims for first 5 chemos--which the policy required I get in the hospital instead of the Mo's office so when I showed up for #6 the hosp kicked me out on my butt and I had no choice but to finish the last 3 treatments at docs where insurance knows they do not cover...feel kinda like they set me up for that. Now with rads they are also requiring it in hospital but no hospitals here do it due to the 3 cancer centers in town. Insurance is adamant they will not pay at cancer center--only hospital. Guess I am driving hr each way for 6 weeks to get it done in the hospital south of here. Not sure how where you get it makes such a difference to them --Oh well...at least they paid for the BRCA test...weird
Maggie
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Marsha and Melissa welcome. Sorry you have to be here though. You will get alot of good advice and encouragement from all of us ladies.
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Lisa, I had a PET scan before treatment , I think it just depends on who your onc is. I also had chest xrays , ekg and an MRI.
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Lovelyface - I'm so sorry to hear about your current scare. I know how anxious you must be, and I'm sure your onc's comments didn't help. I agree with what others have said....this could very well be a benign muscular-skeletal problem, like a bulging disc. I don't know your age, but I do know that these things become more common as we get older. Hoping you get an answer soon and your fears are put to rest.
LauraJane - So glad to hear you're having a good day!
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Riley, thanks for the info on how you came to take Zometa.I hope you do well with it. I've taken Fosamax (with no side effects) but have wondered about Zometa.
Lovelyface,I had rib and spine pain for months, and was too scared to get a bone scan, but when I finally did the scan showed osteoarthritis. You may well have some arthritis in your neck area. I think I remember reading that TN rarely goes first to brain or bone (if that is any comfort at all.)
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Laurajane, I am glad you are feeling better today!
Maggie, I'm sorry you are having to go through that - that is ridiculous! I wonder if the state insurance board would be able to help you - but I guess you have all your rads set up now - Grrrr! No fun having to drive that far for rads. I have BC/BS of Tennessee and overall have been very happy with them. I have a $5,000 deductible plan and all my medical bills are on monthly payment plans.
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LauraJane:
You are one hell of an amazing woman and friend. To take the time you do with all that you are carrying on your back, to care about each of us individually as you do, is beyond the beyond in my eyes. God bless you, LJ, I want nothing but the best for you and for you to have good days every day soon. I only wish I was closer in distance to you - to get to spend physical time with you.
Love,
Linda
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Lovely face: a recurrence is just that - a recurrence. It is NOT a meatastasis that puts you in a different category of "treatable, not curable". A recurrence is another lump in the breast (same or other side) or surgical site/chest wall depending on the type of surgery you had. You treat it exactly the same as any other cancer. So, for you- youre worried about a limp on the back of the neck. As all these other wonderful ladies have suggested, there are MANY possible explanations and I hope you get further examination to clarify the problem. If it is a metastasis, then another list I'm on has 200+ women with stage IV who have lived 400+ years with cancer!! So it is NOT a death sentence!
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Lovelyface, I'm so sorry your going thru this now. I'm 41 now and about 2-3 years ago I pinched a nerve or something in my neck. WOW, did it hurt and it lasted for MONTHS. Finally went to a chiropractor and discovered I've got some arthirtis. Not very happy with your onc, is it possible to look for a new one? Thinking of you.
Suze, so sorry to hear you have pnemonia, hoping you get better ASAP!
BAK - hope your feeling better, love your new avatar, are they your babies?
LauraJane, very glad to hear your feeling better. Cancun is a blast, book that trip! You definitely deserve it. Melatonin for TNBC's? We have some, why is it good for TNBC's? I'll have to google.
I had a Pet Scan when first diagnosed. I was surprised to learn not everyone has one. My insurance BCBS based out of South Carolina paid for it. Maybe because this was my very first mammogram.
Hope everyone has a good week.
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Darn - I know it may be nothing, but I discovered a quater-sized lump in my other breast this evening during a BSE. I have an appt. for a yearly exam with my gyn on the 31st. A part of me wants the lump checked tomorrow - a part of me would rather wait until the 31st so I have time to process what I have discovered. I know - it may be nothing. It was a very tiny spot in November, so whatever it is, it has grown. I know I am jumping the gun on this, but just need to think out loud - if it is a lump, if it is cancer, I am going to demand a mx. this time. I allowed myself to be persuaded to go the preadjuvant chemo route, with a lumpectomy that took half my small breast, and rads last time around. Not this time - no way. I will take charge this time. I will actually demand a double mx. Sorry - so darn upset.
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,,,,addition to my post....I just finished rads last week - this just cannot be happening - not now....I need a break.
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....and that damn "Breaking News" banner has haunted me all weekend - If the mods are reading this, please change the banner - please! Sorry - losing it for a moment.
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Hi,
My 71 yr old mom was diagnosed with Invasive Ductal Carcinoma in October and had a modified radical mastectomy of the left breast on Nov 10, 2011. She found the lump herself between regular yearly mamograms. The tumor was approx 3.2 size, grade 3 with 8 nodes affected. I think this means she's a stage IIIa. On Dec 20 her oncologist informed her that she was triple negative. Bone scan, lungs and chest x ray were clear and she was also sent for CT scan of liver, abdominal ultrasound, echo cardiogram and EKG. She is awaiting the cardiologists report and should learn the test results from her oncologist at an appoointment on Tuesday. She's been told by the oncologist that if the cardiologist thinks her heart can take it, she'll have 16 weeks of dense dose AC and then T chemo ( every two weeks) followed by radiation. I don't know for how long. Mom doesn't have heart disease but has had tachycardia (rapid heart beat) since she was a teen and takes medication which controls it. We're very worried about the chemo and wonder if any of you have been through this and what should mom expect.
Thanks in advance for your help.
"Trying To Save Mom" in Ontario Canada
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Anandagram, it would probably be best to get your lump checked out as soon as possible. Hopefully it will turn out to be nothing, and then you can relax.
Laurajane, So good to hear you are feeling better. Hope you feel even better tomorrow and yes, get that passport.0 -
Thanks, Lynn. I will have it checked soon. I have checked it so many time tonight - It really seems fibrocycstic - I will stay positive.
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TryingToSaveMom- First of all, welcome and I'm so sorry for your moms BC diagnostic. If it can help a bit, my grandma went through chemo at the age of 76 and did REALLY well. We could'nt believe it! It never stopped her. Yes she lost her hair but she had bought a beautiful wig and when she wore it, you couldn't even tell what was going on. Wishing you and your mom all the best. Hang in there. Hugs.
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Tryingtosavemom: Welcome, I'm in Ontario too. It sounds like your mother is in very good hands, and is going through all the usual test protocols. Please don't worry too much... if they determine her heart can't take the AC-T (and it's the "A" adriamyacin that's toxic to the heart), there are alternatives. For example, FEC-D in Canada is very similar and, as I understand, has much less heart toxicity from the "E". Also many women here have done TC (no "A").
Have been trying to catch up on all the posts - what a lively group, love it! Welcome to the new ladies... you'll find support here, ask away and we'll try to help... we're also very good at commiserating!
LJ - so glad to hear you're feeling better. A good omen for that new regimen I think.
Suze: Wow, pneumonia sucks big time on top of everything else - though definitely better than some of the alternatives
. Two of my good friends just came down with it, though thankfully they don't have the complications of trying to get through BC chemo at the same time. Rest, rest, rest - and regain your strength. That Disney cruise sounds awesome!Lovely: I understand the fear, but as the others have said, it could be so many things. Hope you get definitive answers soon (and honestly, I don't understand why the doc goes into all that negative stuff before you even know what's up - shaking my head on that one). Chin up!
Linda - you're such a gem; wishing you all the best.
Titan: too funny on the MRI - I've got one tomorrow - will be thinking of that while I try not to move a micrometer.
Also, good thoughts to all of you in treatment, hoping SEs are manageable.
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Does anyone else have weak/ sore muscles? I was doing an activity for 20 min. yesterday that involved squatting and today I can barely walk, because my leg muscles are hurting so bad. I also notice if I sit for a long period of time that when I get up I am like an 80 year old woman. I called my Onc office and the nurse just told me to take ibuprophen. Is this normal for us?
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Oh F****ing Crap! Just got a call from Dr K about some blood work. It seems I now have an anomaly with my liver. Seriously?! This is supposed to be my celebratory last week of chemo. WTF?! Man, I just want to finish one round of treatment before some other crap pops up. I'm getting tired!
In addition to prepping for my last Methotrexate/Navelbine/5-FU and leucovorin shots I now get to go for a PET and bone scan. My MO is big on scans and I am happy for that. Just not happy to HAVE to get them so often.
Here's to a good day for all, no matter what gets tossed your way!
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ksmatthews - I don't know exactly where you are in your treatment, or in your recovery from treatment....but I think this is pretty normal. Treatment takes a lot out of you and it takes time to regain your previous level of strength. I finished chemo/rads in March 2010 and had muscle soreness, weakness, stiffness, etc for a long time. Took at least 6 months before I started feeling more like my old self physically.
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Hope60 I am 6 months out from chemo...this really sux. I can barely walk today. From a 20 min activity. Ugh!!
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Inmate, I'm so sorry! Did you have to get the Pet/Bone Scan prior to your Liver anomaly? Thinking of you and all happy results.
Ksmatthews - I feel like an old woman!! I started doing my eliptical daily and I thought it was from that but everyone is saying its from the chemo too. I wake up in the morning and litteraly shuffle, can't stand up straight. It takes a good minute to get moving. I sit at a desk all day at work and my back/legs stiffen up unbelievably too. I've noticed maybe the last 2-3 days it hasn't been agonizingly painfull so maybe it's starting to go away?
I've also started taking an asprin everyday, sure that helps a bit.
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Anandagram - get it checked out sooner rather than later. It'll go a long way to ease your mind and reduce your worry.
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