CALLING ALL STAGE I SISTERS
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Hi Mini, I saw my Oncologist for the first time today. I felt like I had to extract information out of her; I forgot to ask my ONCO score (and she didn't offer) She told me "radiation is mandatory and you need to take tamoxifen" I had just spent several minutes explaining that I have a genetic liver disease; my dad and his two brothers dies from liver disease (and I shared my concerns about the other SEs), and she said "you can talk to your Hepatologist" but she still said I need to take Tamoxifen; she basically dismissed my concerns about my liver. I have never been a big drinker; it's genetic. I paused and showed her the drug information card she had just handed me, it says "liver function tests may become elevated"
I asked, what are my options or alternatives, she said "there are none". I said, what is the recurrence for me, if I do nothing. She said, I don't have the numbers, but probably 90%. With Radiation, she said probably 1/2 (so 45%). I asked how much Tamox reduces things and she said recurrence would drop to just a few percentage points.
I like facts and data and found her randomized numbers...well...they don't seem right. I am pretty upset tonight. I plan on seeing a new Oncologist who will actually give me some real information. I feel like she gave me a cookie cutter answer without considering my liver disease. Also when I asked about a reduced dosage because I am so tiny (100 lbs) and senstive to medicine, she said "you wouldn't take half an aspirin would you, everyone takes 20 mg". I said, well actually, I do take 1/4 of my migrain medicine. Just a bad day.
PLCIS 3.2cm grade 3 (stage 0-1), clear margins, PR+ ER+ segmental masec (they took about 1/3 of my breast, but he did a great job)
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Laurie
I am sorry you have had the luck in the draw of an Oncologist that comes across as not caring much. I hope you can find a different one that will tell you the facts with concern for your overall well being. I know there are some good Oncologist, some better and some best, Keep looking until you find one you feel comfortable with and can relate to.
Will be thinking good thoughts for you...It appears that you did find the beast in an early stage and you surgeon must have done a pretty good job..
GOOD LUCK
Vickie
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Laurensandi - You sound a lot like me. I too am small and question whyI would need the same dosage as someone that is twice my size and does not eat well, exercise, etc. I also am medication sensitive, have had liver issues, and a family history of blood clots. My doc just said that studies show that more than the standard dosage was too much an less was not enough. My doc did give me my onco score which is 18. That is right on the cusp of low to intermediary. I don't know why it's not 1-17 or 19-35, but 18 is the highlest an lowest number of each category. I was told that my recurrence chance with Tamox was 11% and double that w/o it, yet from all I have read it can come down to a little as 3% for an absolute risk. That to me is very low for all the side effects. I found several tests that show that more than the standard dose is too much, but none for why less isn't enough. I did read about a test that can tell if you process Tamox well or not. It's not 100%, but neither is the science the docs are using either to predict rcurrence. I would like to know if I might possibly be taking something with serious side effects that I'm not even metabolizing or getting any benefit from. That may be why some ladies say they have few or no side effects. Maybe they aren't metabolizing it, ergo, they are not having the side effects.
I also disagree with my MO that not taking taking Tamox and doing nothing are two very different things. He just smiled and said all I can do is show you the data, the decision is yours to make. I found a naturopathic onclologist about an hour and a half away, but he doesn't qualify for my insurance and all my $ has gone for medical bills and not working for the last 6 months. sigh
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Hi everyone just popping in. I'm off today and sitting at home feeling very sick with Bronchitis and sinusitis... it's that time again unfortunately. The worst part is I now work at a job where I can't call in, because if I do they write u up and give you points against you. It really stinks that you have to go in feeling awful. I am so sick I haven't been off the couch since I got off work yesterday except to go to the bathroom. I haven't even felt like going to Urgent Care (the doc in the box) LOL!! Guess I'll go to the doc tomorrow then go back to work tomorrow night.
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Hope you feel better Mimi!
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Mimi that sounds totally barbaric when you are so sick you can't take time off. Where do
You work? I'm so sorry I can't believe in the year 2012 this is going on.0 -
Mimi, make sure you breathe and cough on your boss. LOL
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Do you get sick days?if you do that is against the law.You belong home if you are sick.I hope you make him along with whoever made that rule catches whatever you have.Bastards.
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Laurie
You said - "I plan on seeing a new Oncologist who will actually give me some real information. "
Have you already found that person? I dont mean to discourage you, but a " regular" MO who would be a whole lot different might not be an easy find.Best wishes to you.
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Mimi, I made a bet with myself, so I looked at your profile, and yep I win! You ARE in health care. Amazing how they want people in even if they are so bad off. I was terminated from my job cause I had exhausted my FMLA, my discresionary leave, and, obviously my boss's patience! LOL I do hope you feel better.
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Feel better Mimi!!
I am so ready for a long weekend... Been really tired this week.... Hope everyone has a great holiday weekend.
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Hi Min, I hope you are feeling better! And thank you Vicky for wishing me well on finding a good MO.
And Purple, I am unsure of your pessimistic comment. I have "clicked" with nearly every medical person I've met in this process; I've found them to be good communicators sharing their knowledge well; I did not find this in the cookie-cutter, closed off guidance provided by MO#1. I have confidence that finding a MO which provides better guidance than her won't be too difficult.
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Hey, does anyone know why the lifemath.net calculator doesn't have a place to input the change in odds with radiation? Am I missing something?
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Hi and welcome to the long week end! So happy to have an extra day off....
Laurie, about the MOs....I hope you will try the top medical center in your area. If you already have, then try another med center or university hospital to see if anyone on the staff can help you. My insurance seemed to ignore the fact that I went to several MOs....they covered it.I certanly agree that meds can be adjusted for an individual. For over the counter drugs I buy liquid doses so I can start with a small dose and increase as needed. On the other side, I do understand the doctors' desire to give the "therapeutic dose" to assure effectiveness.
Why is it that doctors don't want to hear our own description of our medical condition?
Keep looking....there has to be a real professional out there.
Mimi, so awful that you have to feel the stress over taking a sick day. Hope you recover quickly.
Aug. 30th is one year since my BC surgery....I have been cancer-free since then. I plan to try to move forward and enjoy my life and not look back so much. We have to make the most of our healthy days.
Always grateful,
Joan
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Laurie, when I was having really bad SEs from my chemo, enough to send me to the hospital, my MO lowered part of my dose, then the following tx, he lowered another part of the tx. It can be done, so find a MO who will listen and work with you to fight cancer but not make it harder than it needs to be.
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Thank you Moonflower and Joan, Thank you for your cheery comments. I realize I may not like all of the options a MO provides, but I at least want to hear the options and recurrence odds associated with each.
Have a wonderful Friday before our nice and long three days off!
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Laurie RE:
"And Purple, I am unsure of your pessimistic comment. "
I'm, sorry. The comment came from my own experience. I just think that unless you are going to a naturopath, most ( NOT ALL) M.O,'s may be similar in their protocall if not exactly 'cookie cutter'. I certainly do wish you th best in finding a better one.~Peace
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Joan811
CONGRATULATIONS!!!! One (1) whole year. I wish you MANY MANY more Disease free anniversaries!!!!
Vickie
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Joan, Congratulations on One Year!
Purple, no worries; I understand.
Happy Weekend!
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Well I'm not taking the sick day...I still feel pretty krappy but yes in the health care (I am a nurse and work in a nsg home) don't feel that I can #1 afford to take off and #2 I've only been there for a little over 4 months and they work on the points system... 9 points if you call in on a weekend and it results in overtime. Well undoubtedly it would since it is a holiday weekend. I do however have a drs excuse and he pointedly told me NOT to go in if I was running a temp which I am. But it is too late now. So, to work I will go.
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mimi1964 - It can be so frustrating to work in healthcare. Amazingly unhealthy cafeteria food, and policies to not come in if you're sick (wink wink), but penalties if you don't. Also policies about following the laws that you must take your breaks (wink wink), but how is that possible when you have a patient who needs you now and there is nobody to take over? I don't miss it at all.......
I hope you feel better soon and get a better shift!
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Tina, so true! Mimi, feel better.
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Get & Feel better Mimi--don't want any of your charges getting sick!
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Mimi, of course nobody considers the patients when health care providers have to go in sick. I hope this all resolves soon. So sorry you have to deal with this stuff.
Vickie, Laurie, thanks for the cheers for one year.
Just when I decided to move away from dwelling on BC, I just realized tonight that I had tenderness for awhile under my surgery breast. Tonight when I was getting ready for bed I noticed a long protrusion barely visible under my skin going from right under my breast. I looked around the web and found Mondors cording. It i tender and it is making me very nervous. I guess it's veins...I have to find out if this can cause blood clots. I confess, I have been wear underwires since going back to work.
So, no time to celebrate; no time to forget. BC just keeps on giving.
I can't take anti-inflammatory stuff right now as am waiting for results from stomach inflammation tests.
Thanks for listening!
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I had to check out Mondor's cording since it was new to me. Just from the small blurb you wrote here, Joan, I think you are a great diagnostitian. I am sure the underwires haven't done it any favors. I have the "regular" cording from my surgical site into my armpit. I just make an effort to keep it stretched. When I favor that arm too much, it becomes more difficult to move. I don't know what the tx for Mondor's is. Get an appointment ASAP to relieve your mind.
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Yes, send a sick vunerable person to go in and work with sick, vunerable people. Makes perfect sense to me. sigh
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I am on radiation treatment right now. My right breast is so burned, I can't wait till I am done with all this. That same breast is gettin smaller. Does it get back to normal size? I look at my breasts and I just start crying. I look abnormal . I want to feel better And not feel sorry for myself. Thank you for this organization where we can talk about things that are happening to us and maybe someone else could relate to all this.
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Hi Lettiegonz.....Did you have just one lumpectomy...sometimes they take a good chunk and unfortunately in my experience the right breast remained smaller...i also got severe radiation burn...
what are you using for the burn/ How many treatments did you have/
I know this is a overwhelming time for you...We are here and we care
Sheila♥
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Hi shelia88
I had a right lumpectomy on June 19, 2012. My last day of radiation is September 11. I am so waiting for that day. This pass week has been the worst. Can not wear a bra, the burning sensation is so unbearable. I have been putting Ola Vera 100 %. that helps a little. Any suggestion on any bras that would make the breast look the same size as the good breast.0
