Calling all TNs

CharB22

HeidiToo - insurance co's update their policies constantly, so what wasn't covered 6 months ago, may be covered now. Sometimes state mandates also play a role into coverage. For example, my "cranial prosthesis" isn't covered now, but it was about 2 years ago. Also, in the state of DE, wigs must be covered by insurance companies - state mandates it.

lwarstler

Wow, lots to catch up on...that'll teach me to disappear for a month. There are so many new people...so sad, but welcome to everyone.

Suze: So sorry to hear that you are stuck in the hospital with pneumonia, but real excited for your cruise. My husband just mentioned that we should look into that for this summer the other day. Hope you get well super fast and they get those counts up. The anemia is really exhausting.

Anandagram: I can certainly understand being proactive about your ovaries and maybe your med doc doesn't understand the Trip. Neg. BRCA connection. My surgeon and Onc both immediately suggested the BRCA test and I too found BC/BS very accomodating.

Laurajane: I was so happy to see all your posts and to know that they are back to attacking this FC. I'm praying this is the magic cocktail.

Bak: I hope they get that infection under control soon

Titan: I hope that million dollars thing works...I need a new pair of shoes 

I have had no energy to do anything at all for a month (maybe it was partly the holiday, maybe the anemia). Had a GI bleed, anemic, hands and feet swollen to a rediculous size, etc...now waiting on results from colonoscopy/polypectomy, chest ct, and echo cardiogram...docs want to find out why I have a persistent cough and extreme fatigue. I just figured the TAC, but at least I finally have a little energy again this weekend.

I am regretting not pushing for a PET scan before chemo. I am determined to push for one after and I am firing my current onc. After informing me he was checking for lung mets, he also informed me he didn't believe in scans because even if they find a small met, "the plan goal would no longer be to cure it...but to just give me as a good a quality of life as possible for as long as possible."So, he wouldn't treat until it started to physically interfere with my quality of life. He gave the example of a small met to my knee, explaining he wouldn't treat it until it started to interfere with my ability to walk. Am I crazy or does that sound absolutely insane?! I think it's time for him to go and a new one to take his place. I'm supposed to finish chemo on Tuesday...hopefully the echo cardiogram results are back by Monday and I can.

Anyway, I'm hoping whatever has changed to give me the energy to get back online will continue. It's so easy to get depressed away from all this support.

Lee Ann

journey4life

Lee Ann - I'm new to all of this but the response from your onc is frickin' unbelievable! I think I would be looking for a new one.

Is a PET scan standard procedure? I haven't had any treatment yet (surgery or chemo) but no one has mentioned a PET scan.  Should I be asking my onc for one??

CharB22

lisajcj - no one has mentioned PET scan for me either (or bone density or MRI). I was wondering the same thing. I had lumpectomy and starting chemo this thurs.

christina1961

I didn't have any scans until I had some symptoms of rib pain during my first chemo (I'm on a clinical trial of adjuvant chemo now but had neoadjuvant chemo, too.) I had a chest xray but that's all. When I had the rib pain a bone scan and CT scan was ordered.  I believe they are not usually routine because of the radiation exposure and probably lack of insurance reimbursement for earlier stages. My chemo brain is in full flare, so someone help me out and post the NCCI guidelines - if you read through there it will tell you what is "standard of care" for each stage.  Insurance reimbursement is key - if they order something outside "standard of care" it is my understanding that insurance reimbursement would not be given.

Lee Ann, I would definitely get a second opinion.  My oncologist jumped on the scans as soon as there was a reason to do one.  I hope your energy continues to improve. 

Lovelyface

Hi Everyone,  I am having a lot of pain in my neck/head area.  Saw Onc. Friday.  Not sure what he thought after moving my head around a few times.  The pain started in Sept.  At first I went for Physical Therapy, hot, cold, extension exercises.  Nothing worked.  I was waiting for the Onc. office to get my MRI authorized by insurance, which got denied.  December just flew by, I sort of tried to fool myself thinking it is just a mascular pain.  Now, I am not sure.  I have an authorized CT scan, but Onc. said keeping scans to minimum is what he likes, he wrote another MRI, so we will wait for authorization by Insurance company this week.  When I touch the base of skull, all the muscles there have pain, but after massage, that particular pain is now gone, however, I feel something inside there. I think the doctor also could tell it is not mascular as previously I was supposed to go back to see him in 3 weeks, but after checking he suggested I see him in 2 weeks.  I felt he thought something was not right.  I feel there is something there.

You won't believe the things he said to me.  He said if it is a recurrence, me wasting my months of Sept. - Decem. doesn't matter, as recurrent breast cancer patients know they are getting treatments, but life expectancy is less than 10 years, maybe even less than 5.  It is no longer curable, but can only be controlled for some period of time.  He said since we know the life expectancy is reduced, we will try to pay attention to your quality of life, rather than trying hard to treat you.  I had tears in my eyes, I said to him, but that is not the case with a girl in my support group as when she developed hot spots on her spine, her chemotherapy worked and today she is alive and very well. As I understand it, not having it moved into your organs is good, therefore, early detection of recurrence probably is great.  But according to him, I felt he was saying that basically your body is not worth even working with, since there is no hope of cure.  

I surely did not understand his attitude or what he was trying to say.  Maybe I misunderstood him in the way he was structuring his sentences, but I feel that I did understand him and that is exactly what he was saying.

I am scared and am tyring to think what I will do if there is really a tumor there.  Could it be brain met or bone met.  What could it be?

Please talk to me ladies, help me, I am really scared and cannot discuss this with anyone.  My only son and his new wife, they have had a difficult few weeks, I can't give them my worries.  My mom is old and far away in New Zealand.

OBXK

Lee Ann - I found it easier to get a PET, through a cancer center, connected to a teaching hospital.

Hope you feel better soon.

OBXK

(((lovelyface))) - I am so sorry you are in such mental anguish. When I was in rads, they tore a muscle in my neck, At C3, during set-up ( no neck support for 2 hrs) That caused scar tissue, which I feel as a lump. Holding your hand...

Flautalee

Hello--re taking expanders out for rads. My radiation oncologist said no problem and I have only 3 treatments left. Maybe it depends on where the tumor was located. Ask to meet with the RO-my MO had said they would need to come out, too, but I went with the RO's guidance because that is her specialty. Best!

Reality

thanks, Char - yes, my BC/BS is absolutely wonderful - I have Excellus of Rochester, NY - I am a retired teacher. I lost my job 2 years ago, but was offered the chance to retire early, at a lot lower monthly benefit amount, but keep my ins. until age 65 - SO glad I chose early retirement and kept my insurance!!!

Reality

Thanks, Leanne - I am definitely going to ask him about it - even demand to know why it was fluffed off before! 

Sugar77

Hi, may I ask what a BC/BS is? Is it a Breast Cancer Breast Surgeon or some type of medical insurance? It's not a term I've read before.

Reality

msjag - thanks so much for the info! Thanks to all of you - Oh my goodness - how wonderful it is to have each other on these threads - Hugs to all!

Sher 

lwarstler

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 

Anonymous

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.

LRM216

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.

christina1961

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

laurajane

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.

laurajane

Has anyone heard from MBJ?

Reality

Laurajane - As always, your compassion and the time you take to address our issues is amazing - thanks so much.

Sher 

mags20487

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  

ksmatthews

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.

tracie23

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.

Hope60

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!

mitymuffin

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.)

christina1961

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.

LRM216

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

Survivor2Be

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!

mccrimmon324

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. 

Reality

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.