Calling all TNs
Comments
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Char - If you MO won't prescribe, ask your primary. MO might not be able to prescribe for "cancer" but primary may be able to for "High sugar". I got my Primary to prescribe to for possible weight loss.
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mccrimmon-it's for weight loss, too? Cool! I need to drop 30 lbs after radiation.0
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Char - I don't think its for "weight loss" but since my sugars were fine, and I REALLY wanted the script it was the only way he could prescribe it for me that insurance would cover it. Yes, I do need to drop some more weight, have already lost quite a bit but feel like I'm stuck. I need more motivation. We (I) are moving in a couple of weeks and I'd really like to lose just a few more pounds to kick start my diet again.
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Titan: My onc won't prescribe metformin either. My PCP did my annual blood glucose and it was well within the normal range (as is my weight), so he didn't prescribe it either. I've decided not to fuss about it - their reasoning makes some sense to me.
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Char, I hate to burst your bubble, but I'm also on Metformin and I haven't lost a pound. Since I have normal blood sugars, I choose not to even deal with my insurance company. A 90 day supply of it at Walmart is only $10.00
I came to share some news today that may help any newly diagnosed members in the future.
I'm done with chemo and radiation. I was having a discussion with my doctor about follow up testing. She said it was based on the ability to read my mammogram and my BRCA testing status. I asked how they based their decision, as I hadn't had BRCA testing. She asked what they had said when they had discussed it with me? Told her no one ever discussed it. She looked at my history and told me it was because I had no history of breast cancer in the family. I have 2 aunts with it, which was discussed at my first visit (apparently the typist who entered my form dropped off my aunts when she typed the form). Now it became an oh shit, you need to be tested moment for them. ( are you kidding me, now that I'm all through you want to test me!!!! If I test positive, some people will see how well I can fly a broom!
What I want everyone to know is what I learned from my insurance company when I went to find out if it was covered. There were about 12 criteria, by which the company decided if the test was deemed "medically necessary", and you only have to meet one criteria. (turned out my 2 aunts, because they were old when they got the disease)
This is what I want everyone to know: Individuals with a personal history of breast cancer, and diagnosed age less than 60 years with a triple negative breast cancer;
Apparently it is deemed "medically necessary" for anyone of us under age 60. (other companies may be different, but insurances are pretty standard)
I wish I knew this a year ago!!!! For now I'll just pray that I don't test positive. I can't imagine my reaction if I am positive and they come to me and say Ooops, we should have suggested a double MX in your case.0 -
The critieria are different in Canada... and no doubt elsewhere in the world.
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Char - I guess I should also mention that I haven't lost any wieght from being on it either.
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What is the purpose of metformin? Is it suppose to help with reoccurance or just for weight loss.
Kathrynn - I wasn't tested either, but I assume it is because even though both of my parents have cancer (older) it wasn't breast cancer. At least I HOPE that is the reason! Guess I will start a list of questions for my next meeting with the MO!
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There have been studies that show Metformin MAY BE able to reduce your risk of recurrance. I'm not sure anything has been proven but as TN's I think we're all pretty much willing to try anything that won't hurt us.
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Kathy, I had BRCA testing when I was first diagnosed. Insurance covered it 100% because of the TN diagnosis and my age. I am the only person in my family on my mom's side diagnosed with BC. My grandmother died of lymphoma when I was 20. She worked in the ship yards during the war and it was believed the asbestos was the contributing factor. Long story short- I am the only one in over 100 years with BC.. or any other type for that matter.. can you say environment!!
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Clowngirl...it is so scary to be diagnosed with this but there are many many treatment options. First step is reading a bit through this thread. Wherever you are, take some time, breathe and seek out the best oncologist you can. Many of us have traveled for treatment as the major cancer centers are great places to get treatment or at least a treatment plan. Don't be afraid to get a second opinion from another hospital and always, ALWAYS take a friend or spouse with you to interpret what is being said.
So sorry for the loss of your sister. It has to be terribly frightening. We are here and you will find a wealth of support on this thread.
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Lory48, do you mind me asking your age? Are you 48 or born in 48? I was 64 when dx'd and have no family history. No BRCA test for me....I wasn't even informed about it. Being on BCO is how I heard about it.
And to all TN's, isn't all TNBC a Grade 3....I see a couple of Grade 2's posted.
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Wrenwood47 It is mostly a high grade or grade 3 cancer but I was a moderate to high and when Mass General and Mt. Auburn reviewed my slides they both decided that I was a 2. It is weird because I was informed by one oncologist that grade 3 responds better to chemo. The other disagreed.
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Susan, Thanks for the explanation. I was very confused after my lumpectomy when my BS said the words TNBC. When I chose not to have Chemo the MO thought I was crazy. Yet, my RO and MD were "on the fence" and agreed with my decision to just have radiation. I have scanned this thread and have not been able to find anyone that skipped the chemo and just had radiation. If you're out there and reading this please write, I'd like to connect. Just want to hear what choices you made and why.....almost like Monday morning quarterbacking, but I don't want to feel so alone in my decision.
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As Luah said, the criteria are different in Canada. I was 45 at diagnosis but without a family history, I do not qualify for testing. Had I been under 35, then it would have been a different story.
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My understanding of the new guidelines from the NCCN is that all TN's qualify for testing.
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Clowngirl - So sorry you have to join us but you couldn't find a better site. The ladies are right just don't believe everything you read on the compter. I went on when I was diagnosed and scared the living daylights out of myself. I am 65 yrs and to me at first it was a death sentence. As they say chemo is doable, tough at times but doable. We have all been scared and still are at times of the unknown but you and us will get through this and come out the other side. Everyone on here will talk your hand and walk you through this so don't be scared to vent, cry, rage, swear and anything else that makes you feel better. You can do this as these ladies have told me so many times.
Can anyone tell me a bit more about the BRAC gene test. I have been approached by the Auckland Health Board to go through this testing. My grandmother had left BC same as me and my mum had ovarian cancer. I have thought about having an oophorectomy to try and avoid ovarian cancer. If I test positive will I have to have my other breast removed. What exactly does the gene test tell you. I don't want to go onto the computer because I said above I will scare myself silly and you are all right the data on there is sometimes out of date. What difference if the BRAC 1 and the BRAC2. Hoping somone can put me right.
I went to see my new Oncologist yesterday and didn't see him. I got his Registrar which I wasn't too happy about. I wil be starting Taxol in two weeks and all she seemed to want to talk about was giving me extra Dexamethazone which makes you hyper. So I might see If I can travel further and see my first Oncologist as she was great and I had a lot of faith in her. I asked this Registrar if the Oncologist had an interest in TNBC and she didn't know duh!!.
Today I feel quite good after my last Wednesdays chemo so maybe a lot of the side effects were psychological as I might be feeling better because it was my last one. You can never tell with me I am so up in the air about all of this. Have a good day and sending lots of warm fuzzies. Annie
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Cocker_Spaniel - The BRCA1 test is for breast cancer gene mutation. BRCA2 is for ovarian. I had the test done - simple blood test. About 3 weeks later, the results were back and I'm negative. What that means for me is that I don't have the mutation and won't pass it on to my boys. It also means that my chance of getting ovarian cancer is same as the general public's - same thing for BC - I just happened to be the 1 in 8 women that get BC. Darn! It also helped me decide that I didn't need a prophylactic mastectomy. If I was positive for either gene, it would have been a no brainer - cut 'em off and take 'em out.
I was eligible for the test because I'm TN, 47, and maternal grandmother died from BC at 52 - although mother never had BC.
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Wren, I am 48. I was diagnosed just 8 days after my birthday last year.
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CharB22 - thanks for replying. So this may not be so good for me then because I had the blood test done weeks ago and all I have had so far is an appointment given to me at the end of May. It was to be a bit earlier but I had the oncologist at the same time in a different town. I did ask when she phoned whether I was clear or not and all she said was I am not sure. ummm I really hope no more surgery but I am a bit afraid of the legacy I may leave my beloved girl. Thanks. Annie
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Heard from my PCP today. I had MRI of brain, carotid doppler and bloodwork. All came back just fine. So that leaves my concerns of forgetfulness to chemo brain and menopause and I am thankful for that.
I had BRCA 1 and 2 test when I saw Onc for the first time. Came back negative. Insuranced covered it.
6 month Onc appointment is on Monday. Not expecting any surprises.
Have a good night everybody.
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wren,,,I do remember one person that had tn and didn't do chemo...let me think on this..she has been on this thread and she is doing fine..I think her tumor was very, very small..you have in situ and that is very good...just be sure you are followed very carefully..like we all are...most of us tns have grade 3 but not all of us...
I really like our discussions on here...!
I've got the dreaded mammo coming up in a couple of weeks..after Mother's day I'm starting to freak already but know that IF there is something at least it is in my breast...I think I'm ok..don't feel anything..but the closer I get to the more I'm walking around feeling myself up..ha ha...I really never paid that much attention to my breasts b-4 cancer...you guys know where I'm coming from
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Wow! You ladies have been talkative! Took me quite a while to catch up!
Inmate- hope things are going as well as they can for you. I will gladly donate my "shitkicker" boots to help you!!
Welcome to the new ladies. So sorry you are here, but we are here to help. These ladies have been a lifeline for me.
Heather- Love the new avatar! Your hair is looking great!
I just received a phone call from my cousin-in-law that came and helped my husband take care of me and the kids after my MX. She has just been diagnosed. All she knows is that is it small- 9mm. She won't have all the results until next week. Have I mentioned lately that I HATE CANCER?!!!
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Oh TifJ, I am so sorry to read about your CIL. You will be a wonderful support for her.
I HATE CANCER, TOO.
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Hi. I'm new this thread, new to this site, new to breast cancer. I was just diagnosed 4/10, and found out just Monday (4/16) that it's TN. I'm learning a lot from this thread, and I'm very, very thankful for it.
I still don't know much about me yet. I have a PET scan and a mugo scan scheduled for Tuesday, with a follow-up on Thursday to where I'm hoping I'll learn everything that is in store for me. As of my Monday appointment with my new oncologist, we shall be doing chemo first, then surgery, then radiation.
I'm young-ish (39), with no history of BC in my family....but I don't have much family, at least on my mother's side. She's healthy with no history, but her mother died young of something else, her mother's mother died very young, and I have no aunts. My surgeon suggested that I get the BRCA test (and, luckily, my jnsurance should pay for it) because of my age and the unknown family history. And as my oncologist said, I have a young son to think about. And his kids to think about.
So, yeah, I'm still learning a lot. And I'll be lurking around here, learning from you all. Right now it's still a bit overwhelming.0 -
I still lurk more than I post, but wanted to welcome the new gals. This thread had a lot of info for me when I was newly diagnosed and still in full freak-out.
I had just turned 49 when diagnosed, but wasn't offered BRCA testing due to no family history, although I found out last year my GGGM had BC in her late 80s.I'm on Metformin from my primary care doc. The way she explained it to me was that my body was becoming insulin-resistant and this drug fights that. I had borderline high fasting glucose and had developed fat deposits in my liver. She said it was pretty much impossible for my body to burn fat if I had both elevated blood sugar AND elevated insulin levels (my body's first response to elevated sugar). Getting that back into alignment is what helps you to lose weight on Metformin. I'd lost 20 pounds since the start of the year, but think I've regained some of that in the past month because I've been slacking off on the stationary bike.
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CharB22, when r u supposed to have the BRCA1 test done, at the get go after dx, after chemo, surgery, radiation, it was mentioned to me but I can't remember anymore?
CSMommy, welcome, although I'm sorry u have to be here in the first place. We have a lot in common, I too am 39, turning 40 in May. I had chemo first, still in progress, but almost done, will have surgery in May, then on to radiation thereafter. I don't have any family hx of BC either. I have 2 young girls, ages 6 and 9. You have come to the right place to get info and all the support u wouldn't believe u can ever get anywhere else. These women are at different stages of treatment, so ask away. Many are beyond 5 yrs without recurrence, which is really reassuring, so hang in there and read/ask away!0 -
Wishn4one, our girls r around the same age, have u heard of camp kesem? I'm sending my girls this summer, it's a camp sponsored by universities for kids touched by CA for fun and counseling. It seems like a great opportunity, I'm not sure if they have one in your state, but worth looking into, it's free for kids with parents who have or have had Ca from ages 6yrs and up.
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naan1004- I'm not sure what/if there is a time frame for getting the BRCA tests. I had mine done shortly after dx.
Cocker_Spaniel - Perhaps yours is taking so long because, to my knowledge, there aren't very many companies that analyze the blood. I think there may be only 1 here in the US (but I could be wrong about that...I just remember hearing that somewhere). Maybe yours will come back negative (my fingers are crossed). It's funny though, because I was actually disappointed when the genetic counselor and my MO told me I was negative. They couldn't understand it. I told them it was because if my BC was genetic, at least I'd know WHY I got it. With being negative, there was no reason.
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Thanks Navy- I sure hope I can help her like she helped me!
Char- I think you are right that the only BRCA testing facility is here in the US- Utah I think.
Cocker- glad to see you are hanging in there. Congrats on getting through the fist phase of chemo!! I don't know anything about Taxol (I had TC), but I bet you will do great!!
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