Calling all TNs
Comments
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The crazy thing is it wasn't there at one point... I don't know how it changed??? Or what I did
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tracie-- I wondered about that "mets" word in your signature also. I always get a little concerned when I see zero nodes and mets.
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Well...thanks Tracie for fixing that...I was wondering too...geez...was someone creeping on your profile or something??
Suze..hope you are home soon and planning to wear those Minnie Mouse ears...
Um..a little story to tell you..went to get groceries today...walked out. drove to a nearby dept. store to buy some new running shoes and realized I had forgotten to pick up my groceries.... so I got back in my car and went to pick them up.....just when I thought my brain was getting better...guess not..dang..
My new shoes are HOT..black with just a little pink...my DH was kinda smirking about them..dang him...
Welcome to all our new TN's on this board...as you can see we talk about about alot of things..but hopefully we can help you through whatever you are going through right now..ok??
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Quick update - I thankfully don't have a pulmonary embolism, which was the first thought. After a re-read of the CT scan, it was determined that I have pneumonia. I am also pretty anemic - my doctor is keeping a close eye on my blood work, and will pull the trigger on a transfusion if I show any sign of going downhill. My heart rate has dropped a bit to 125-130, but still too high. We are waiting to see if that continues to improve with more fluids and antibiotics, and as my anemia slowly improves. Upshot is, another 2 nights here. Ugh.
Best,
Susan0 -
Suze....glad it's not the worse of the two. Just seemed bad to say "yay for pneumonia." Hope you are getting lots of good rest while in the hospital and know you will come out feeling stronger!
I seem to be on a sleep all day cycle after this last round. Between the extreme all-over bone pain and general fatigue, I can't sleep. But boy do I want to. Tonight I will be taking some pain meds to help. Let's hope it works!
Have a good night all!
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Glad it's not an embolism, Suze! Yep, pneumonia and anemia both will cause your heart to beat faster, trying to increase the amount of oxygen to your body. Anemia means not as much hemoglobin to carry oxygen, and pneumonia can clog and fill areas of lung tissue, which then can't absorb as much oxygen as usual from breathing. The only way the heart can work around this is to pump more often.
Mity, my onc brought it up. He got a baseline bone density before he switched me to Aromasin, as it can increase bone loss. I had always had excellent bone density, in the 98th percentile or higher, so I was really shocked to find out I have mild osteopenia, or the beginning of bone loss. BC and its treatment is really the gift that keeps on giving, isn't it? Grr. Anyway, he said I could pick whether I wanted to do something like Fosamax, which is a weekly pill (my Mom's on it and says it causes her terrible heartburn), or I could have Zometa, which is a twice yearly IV. I looked it up and it seems to have fewer side effects and I really like the twice a year thing. If all goes well, I'll suggest my Mom switch to Zometa from Fosamax.
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Inmate,
Hope you are feeling better soon and get some good sleep.
Hope everyone has a great night- or morning! I seem to feel a little better this round of chemo- no rhyme or reason for that, but only two more cycles and I'm done! I'm going to try to work tomorrow so Monday won't be so bad.
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Susan- Glad to hear you are in good hands and that you are getting better. Take good care. Hugs.
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Susan - I hope you are getting some good rest and you continue to improve.
Hugs,
Michelle
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Hello Susan - my thoughts are with you.
Sher
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Hello everyone!! I was just tested for braca 1 &@, negative, I believe its new practice from NCCN if you are under 60 and have triple neg. Many oncs, (Dana Farber, Dr Winer who is an associate of my onc at a different office) recommed this, thinking that many TN's may be braca 1 and 2 even without a family history. I read this, and went to my onc, and she said yes, it is recommended, Blue Cross BS, my insurance paid for it, so it must be covered!! I'm not good with links, but I believe I read this on an article right on Breastcancer.org. Wanted to share. Its so wonderful to pop in and read the wonderful support here. Wishing you all a healthy 2012.
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I am 61 and my insurance is covering BRCA testing (I have Anthem BC BS of CA). I am lacking any significant family history, also. I should be getting the results any day now. Dana Farber worked with my insurance company on getting the approval.
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What a coincidence it is that I just found your posts! I just wrote to my med onc to request BRCA testing. He just brushed it off as "something some people like to do". I was adopted and have no idea of family history - I want to know!!! My BC/BS has been absolutely amazing so far - I have only had to pay out $200 for thousands and thousands of dollars of treatment. I will have my med onc office check with them to see if BRCA testing will be covered for me. Wonder why my med onc. brushed it off?
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,,,my post continued....I especially want to know since it was determined that I had an "incomplete response to chemo". I am seriously considering demanding a preventive oophorectomy - I do not be extreme, but why not get the darn ovaries out before the cancer decides to attack them?
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Hmmm.. I have BC/BS and they would not cover BRCA testing. I looked into it 6 months ago.
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Anandagram, Wow...I'm very surprised about your onc's response to the BRCA test. I'm also adopted and my BS told me to get the test. My insurance, BC/BS also covers it but certain criteria have to be met - diagnosis if TN under the age of 50 (which I am) and have relatives with BC. Since I'm adopted, that's not going to be known. You should definitely find out if your BC/BS covers it. I'm glad to hear you're having a good experience with your insurance. I work for my BC/BS (in a communications dept) and I constantly hear all the trouble people have and it breaks my heart. I was looking at my EOB the other day and saw that my lumpectomy and SNB cost over $35,000. I paid a $50 copay. My chemo is covered at 100%. Whew.0
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HeidiToo - Your BC/BS will have certain criteria that the want met in order for the BRCA tests to be covered. Go to their website and see if they have section on "medical policy" then if they have a search function, search BRCA. PM me if you want and I can look for you (I work for a BC/BS in a communications dept.). It could also be that the doctor's office didn't submit the correct code - a lot of times stuff is actually covered but a tiny typo or numbers getting reversed can mean a denial for something. It gets a little crazy.0
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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.0
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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
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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??
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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.0
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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.
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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.
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Lee Ann - I found it easier to get a PET, through a cancer center, connected to a teaching hospital.
Hope you feel better soon.0 -
(((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...
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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!
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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!!!
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Thanks, Leanne - I am definitely going to ask him about it - even demand to know why it was fluffed off before!
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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.
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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
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