Stress Out .. Anxious -- waiting for my appointment, tomorrow, 2/14
My anxiety stems from my confusion about these post op check ups .. Doctor will check me out, ask me questions, along with a CBC = complete blood count, and panel. What not MRI/scans ????
I have asked several times .. when am I scheduled Scan, or MRI -- only to be told, that I don't need one. Hence, my confusion. Is he kidding me ##@#!
8/10/09 -- lumpectomy
8/14/09 -- cancer found
(DCIS - Stage 1, Her2 neu/positive) my cancerous tumor removed ==
orange size tumor (left breast) .. clear margins --
8/26/09--First apptmt with Breast Cancer Specialist .. plan
put into action .. chemo first --as my breast needed time to heal, after
16 weeks of consecutive TCH, bilateral mastectomy (my choice), Dr. Harness
urged me to keep my breasts .. con-caved left breast could be filled in with a
a gel/silicone implant.
1/12/10 .. bilateral (my choice - as I fought and won battles with both ==thyroid cancer, and cervical cancer).. thyroid cancer .. detected in my late teens .. go figure!
1/17/10 ... DECLARED NED .... Yes, 1 year and counting!
I know that I can AGAIN, get breast cancer even tho I've had a bi-lateral mastectomy. I know that the recurring rates for 'us' breast cancer - WARRIORS -- is higher than published, or research state. Most doctors relay on 'Bell Standard' charts, which as my Oncologist states in outdated, due to lack of funding.
I will go in tomorrow, and request/insist on MRI ..if I do not get my request, I will then find another Oncologist.
Any suggestions, Sisters in PINK?
Vicki Sam
Comments
-
Diane .. You are so sweet and kind...pokrydi said:WOW you have been thru alot
WOW you have been thru alot my thoughts will be with you tomorrow I just found out in late dec 2010 I had it was a lump then jan 2011 bc and I learned really fast the waiting is the hardest part. Positive thought with you. Diane
just trying to keep myself busy ...
Thank you!0 -
I can relate to the waitingVickiSam said:Diane .. You are so sweet and kind...
just trying to keep myself busy ...
Thank you!
I can relate to the waiting not that I am excited in any way to start chemo but this waiting til my body heals from the 2 surgeries is driving me nuts. I love to play golf and its killing me knowing that I will be doing chemo and rads during the season keep thinking I will still get to play but reality is I will probably be sitting in the cart with my golf partner watching her. guess there will be many more years for golf =:) Di0 -
Vicki... it is nerve
Vicki... it is nerve racking. I will be there holding your hand and will make sure to say a prayer for you dear friend.
BL0 -
Check out NCCN GuidelinesBella Luna said:Vicki... it is nerve
Vicki... it is nerve racking. I will be there holding your hand and will make sure to say a prayer for you dear friend.
BL
Vicki-
I don't get MRIs either. I was Stage 1, Gr 2, ER/PR+, HER2-. I kept seeing women on this board having CTs and MRIs and tumor markers so it worried me why I wasn't having them. I feel better after following the very comprehensive flow chart in the NCCN Guidelines.
http://www.nccn.org/index.asp You have to register, but don't need to be a physician to view the guidelines.
Doesn't mean you still shouldn't ask your oncologist, but it might make you feel better.
Suzanne0 -
Anxiety...
Anxiety...oh yeah. Always anxious! Even the blood tests make me want to go & hide somewhere because I fear the results.
Usually, an MRI or PET is not performed unless there is some problem or suspicion. Mostly because of their cost. Your Dr. has to justify to the insurance company that the test was needed. If there is no justifiable reason, they are usually denied.
So, if your Dr. says he doesn't need to order one, and you are happy with him otherwise, then it is likely that he can't order one because your are not presenting with symptoms that indicate an MRI or scan is needed. It's not because he doesn't care.
But make sure you discuss this with him, by all means.
And please let us know how your appointment goes.
CR0 -
Had the same questions..
Seems the further out of treatment the more anxious we become...at least for me....I was dx 22 months ago..lumpectomy,chemo, rads..stage 2 no lymph node involvement, clean margins..close to the chest wall though and I'm triple negative..The ONLY TESTING other than blood work every 6 months is a BSGI (or BGSI..I get that confused) test in Oct.2010...this was due to something showing on my mammo in the good girl boob...nothing found...thankfully! My surgeon who still follows me and said in Oct. That a breast MRI would probably be called for sometime this year... Due for yearly mammo in April..blood work and oncologist visit both in June....my physicians said they don't "routinely" do Pets, Cats for several reasons which have been mentioned...insurance,cost etc. And other than an MRI all others involve radiation...the less radiation the better.
If you're happy with your oncologist, I, personally, wouldn't write him off for not ordering tests...or be prepared to pay out of pocket for an MRI..my
Breast MRI was $ 4,000.00...and yes BC can haunt each and everyone of us again...and anyone else...
I so understand your anxiety...it's something we all have to deal with and work through..the best we can...especially after all you've gone through.
Keep us posted..we care
Peace be with you,
Nancy0 -
Suzanne .... You saved me ..!MAJW said:Had the same questions..
Seems the further out of treatment the more anxious we become...at least for me....I was dx 22 months ago..lumpectomy,chemo, rads..stage 2 no lymph node involvement, clean margins..close to the chest wall though and I'm triple negative..The ONLY TESTING other than blood work every 6 months is a BSGI (or BGSI..I get that confused) test in Oct.2010...this was due to something showing on my mammo in the good girl boob...nothing found...thankfully! My surgeon who still follows me and said in Oct. That a breast MRI would probably be called for sometime this year... Due for yearly mammo in April..blood work and oncologist visit both in June....my physicians said they don't "routinely" do Pets, Cats for several reasons which have been mentioned...insurance,cost etc. And other than an MRI all others involve radiation...the less radiation the better.
If you're happy with your oncologist, I, personally, wouldn't write him off for not ordering tests...or be prepared to pay out of pocket for an MRI..my
Breast MRI was $ 4,000.00...and yes BC can haunt each and everyone of us again...and anyone else...
I so understand your anxiety...it's something we all have to deal with and work through..the best we can...especially after all you've gone through.
Keep us posted..we care
Peace be with you,
Nancy
Thank you for providing me with the guidelines site! OH my Lord .. sigh ... going over there right now.
Thank you .. Thank you ...
Thought I was CRAZY .. well, you know what I mean.
Still happy, and Twisted in California .. I feel life coming back into my body and soul!
Vicki Sam0 -
Yep Nancy...MAJW said:Had the same questions..
Seems the further out of treatment the more anxious we become...at least for me....I was dx 22 months ago..lumpectomy,chemo, rads..stage 2 no lymph node involvement, clean margins..close to the chest wall though and I'm triple negative..The ONLY TESTING other than blood work every 6 months is a BSGI (or BGSI..I get that confused) test in Oct.2010...this was due to something showing on my mammo in the good girl boob...nothing found...thankfully! My surgeon who still follows me and said in Oct. That a breast MRI would probably be called for sometime this year... Due for yearly mammo in April..blood work and oncologist visit both in June....my physicians said they don't "routinely" do Pets, Cats for several reasons which have been mentioned...insurance,cost etc. And other than an MRI all others involve radiation...the less radiation the better.
If you're happy with your oncologist, I, personally, wouldn't write him off for not ordering tests...or be prepared to pay out of pocket for an MRI..my
Breast MRI was $ 4,000.00...and yes BC can haunt each and everyone of us again...and anyone else...
I so understand your anxiety...it's something we all have to deal with and work through..the best we can...especially after all you've gone through.
Keep us posted..we care
Peace be with you,
Nancy
It's pretty much up to us to figure out if something is going on. I hate that! I have to rely on what I think is normal (can't compare underarm to other side because I pretty much don't have an underarm there, so don't know if that is what it's supposed to look like. Same with breast)
I see all of my medical team twice a year still (dx'd in 2008) and mammo on remaining breast yearly, oftentimes with ultrasound, but even though I am vigilant and have, in fact asked to be seen earlier (and I was), I hate that the responsibility is mine to know what is a potential problem and what isn't.
LOL! There are days that I want to shower with my clothes on so I don't have to look, for fear I'll find something!
CR0 -
I havn't had an MRI or scanMAJW said:Had the same questions..
Seems the further out of treatment the more anxious we become...at least for me....I was dx 22 months ago..lumpectomy,chemo, rads..stage 2 no lymph node involvement, clean margins..close to the chest wall though and I'm triple negative..The ONLY TESTING other than blood work every 6 months is a BSGI (or BGSI..I get that confused) test in Oct.2010...this was due to something showing on my mammo in the good girl boob...nothing found...thankfully! My surgeon who still follows me and said in Oct. That a breast MRI would probably be called for sometime this year... Due for yearly mammo in April..blood work and oncologist visit both in June....my physicians said they don't "routinely" do Pets, Cats for several reasons which have been mentioned...insurance,cost etc. And other than an MRI all others involve radiation...the less radiation the better.
If you're happy with your oncologist, I, personally, wouldn't write him off for not ordering tests...or be prepared to pay out of pocket for an MRI..my
Breast MRI was $ 4,000.00...and yes BC can haunt each and everyone of us again...and anyone else...
I so understand your anxiety...it's something we all have to deal with and work through..the best we can...especially after all you've gone through.
Keep us posted..we care
Peace be with you,
Nancy
I havn't had an MRI or scan either since completing treatment, and I'm coming up on my 2 year mark in March. I was having some pain in my shoulder and my Onc. did send me for an Xray....but I think unless I go in an say my bones are hurting or something, he won't just schedule a MRI routinely. After so many recurrances with our sisters lately, believe me the thought has crossed my mind to make up some symptoms so I can get the tests, and if I ever actually have any symptoms I will demand every test available. So, the question is are you anxious in general as we all are, or is there something going on specifically that you are worried about? Either way, go ahead and ask for the tests. I'm going to ask at my next appt. , but I doubt I'll get them approved without some specific problem. I'll be interested to hear what your Onc. says.
Dee0 -
VickiSam,MAJW said:Had the same questions..
Seems the further out of treatment the more anxious we become...at least for me....I was dx 22 months ago..lumpectomy,chemo, rads..stage 2 no lymph node involvement, clean margins..close to the chest wall though and I'm triple negative..The ONLY TESTING other than blood work every 6 months is a BSGI (or BGSI..I get that confused) test in Oct.2010...this was due to something showing on my mammo in the good girl boob...nothing found...thankfully! My surgeon who still follows me and said in Oct. That a breast MRI would probably be called for sometime this year... Due for yearly mammo in April..blood work and oncologist visit both in June....my physicians said they don't "routinely" do Pets, Cats for several reasons which have been mentioned...insurance,cost etc. And other than an MRI all others involve radiation...the less radiation the better.
If you're happy with your oncologist, I, personally, wouldn't write him off for not ordering tests...or be prepared to pay out of pocket for an MRI..my
Breast MRI was $ 4,000.00...and yes BC can haunt each and everyone of us again...and anyone else...
I so understand your anxiety...it's something we all have to deal with and work through..the best we can...especially after all you've gone through.
Keep us posted..we care
Peace be with you,
Nancy
Anxiety is a B**h
VickiSam,
Anxiety is a B**h isn't it? After reading all the other posts, I guess there are many factors that weigh into having MRI or PetScans at the time of check ups. It seems that they are not the norm unless there is a reason that points to the need. I agree with those that stated if you are otherwise happy with your doctor not to change. My cancer was small 1.1 com, no nodes, ER+PR+Her-. I had a lumpectomy, rads and am taking arimidex. At my check ups my onc. checks my breasts, nodes, heart, and lungs. We talk about the arimidex and if I am having any side effects (I don't) and that's about it. I do CBC every 6 months for another doctor and she can access these so she doesn't order them herself. I would say that if you really feel you need a MRI or PetScan to discuss it with your doctor and ask why not. My sister had a more advanced, complicated breast cancer and she has MRI and PetScans done at least once a year. I think the reason these have been done is because she has back and hip pain so they want to rule out recurrence. So far, they have been fine. So, if you have anything that sends up a flag they will do these tests.
If it helps I will be in there with you, holding your hand and whispering it will be okay during your appointment. Prayers, positive energy and big hugs coming to you. Let us know how it goes please.
Stef0 -
Suzanne .... You saved me ..!MAJW said:Had the same questions..
Seems the further out of treatment the more anxious we become...at least for me....I was dx 22 months ago..lumpectomy,chemo, rads..stage 2 no lymph node involvement, clean margins..close to the chest wall though and I'm triple negative..The ONLY TESTING other than blood work every 6 months is a BSGI (or BGSI..I get that confused) test in Oct.2010...this was due to something showing on my mammo in the good girl boob...nothing found...thankfully! My surgeon who still follows me and said in Oct. That a breast MRI would probably be called for sometime this year... Due for yearly mammo in April..blood work and oncologist visit both in June....my physicians said they don't "routinely" do Pets, Cats for several reasons which have been mentioned...insurance,cost etc. And other than an MRI all others involve radiation...the less radiation the better.
If you're happy with your oncologist, I, personally, wouldn't write him off for not ordering tests...or be prepared to pay out of pocket for an MRI..my
Breast MRI was $ 4,000.00...and yes BC can haunt each and everyone of us again...and anyone else...
I so understand your anxiety...it's something we all have to deal with and work through..the best we can...especially after all you've gone through.
Keep us posted..we care
Peace be with you,
Nancy
double post .. sorry!0 -
Will be thinking of you
Hope all goes well and that you are content with whatever happens with the MRI. I am beginning to understand how BC affects the rest of our lives and I haven't even finished chemo yet. I am already wondering how I will feel when they turn me lose so to speak. Right now the cancer center is like my little security blanket and I am worried that if and when I am declared NED how will I know what to look for in case of a reocccurance. So no suggestions but you are a survivor and proactive in your own care so you will get this resolved!!!0 -
Big Hugs!
I wish I had some great advice or magic works to send you, but I do have you in my heart and will be holding your hand tomorrow.
What time is your appointment?
xoxox
Cindy0 -
I get itPinkPearl said:Will be thinking of you
Hope all goes well and that you are content with whatever happens with the MRI. I am beginning to understand how BC affects the rest of our lives and I haven't even finished chemo yet. I am already wondering how I will feel when they turn me lose so to speak. Right now the cancer center is like my little security blanket and I am worried that if and when I am declared NED how will I know what to look for in case of a reocccurance. So no suggestions but you are a survivor and proactive in your own care so you will get this resolved!!!
I had the oncologist appointment last month, but all she's got is lab work -- tumor markers and we all know there's varying opinions about how useful those are or aren't. Then last week had the mammogram, both sides, and three days of waiting for those results. While waiting for results is anxiety ridden, at least something was checked. So I understand your concerns.
But it looks like Suzanne has provided you with guidelines that make you feel better and I'm glad for that.
Personally, I wouldn't mind a weekly PET scan just to be sure of things:)
We're all here ready to carry you through your appointment.
Big fat cyber hug,
Victoria0 -
Vicki, I understand your
Vicki, I understand your anxiety completely. They don't do scans here either unless you are symptomatic after tx. I want everything done, LOL but they just offer bloodwork, poke and feel and mammos yearly. I am coming up to my 5th yr from dx. I am thinking that once I'm off the hormone therapy I will cough the $ for a pet scan as part of my own monitering. One thing this cancer has taught me is "fear" and I really don't like living like that.
Congratulations on your 1st year!! I hope you take the time to celebrate
hugs
jan0 -
Thanks, Vicki!phoenixrising said:Vicki, I understand your
Vicki, I understand your anxiety completely. They don't do scans here either unless you are symptomatic after tx. I want everything done, LOL but they just offer bloodwork, poke and feel and mammos yearly. I am coming up to my 5th yr from dx. I am thinking that once I'm off the hormone therapy I will cough the $ for a pet scan as part of my own monitering. One thing this cancer has taught me is "fear" and I really don't like living like that.
Congratulations on your 1st year!! I hope you take the time to celebrate
hugs
jan
Thanks for asking all the questions I have. My appt. is on President's Day, and I want to tell the onc doc to just scan everything!! Of course, he'll poo poo that idea, but I am going to make him do something more than just poke at my ribs and hip. I know the hip has osteoporisis (in a never ending effort to give cancer the middle finger, some words I just refuse to learn to spell!) and from a bone scan I had earlier this year, I know the chemo really hit my hips hard. Now one of them hurts almost continually (but the worst when I am trying to sleep) and I want it checked out.
I guess if I had had no lymph node involvement, I wouldn't worry. But those darn things didn't do their job, so now I'm left wondering: Just exactly what does blood work tell my doc about cancer? does my blood have little neon signs that say "Dude, we're back!" or what?
So thanks for asking my question, and thanks to whomever provided the link. It helped a bit. But, since the only thing I remember about my diagnoses is estrogen positive, invasive (I was like "Yeah, yeah, blah blah blah about the diagnosis. NOW WHAT ARE WE GONNA DO ABOUT IT???) I'm still at a bit of a loss. Of course, I could pull out the paperwork and look it all up, but why revisit bad memories?0 -
Vicki, Most docs don't do
Vicki, Most docs don't do MRIs as follow-up. I agree with you though, it seems that would be automatic. I am almost 5 years out and just graduated from 6mos visits to yearly. However, I still get yearly MRIs because my breast tissue is still very dense. The downside of this is I have had 3 biopsies in the last year or so because areas keep showing up. My last biopsy was august and I have to have another MRI next month to check the area.
Each time these areas turn out to be benign, but I have to go through a lot of stress and worry waiting for results. I guess it is good to be proactive though so if something bad develops we can get it right away. My onc says that I am low risk, its my radiologist doc that found my breast cancer that insists on the MRIs. But with dense tissue, things don't show up as well on Mamm or ultrasound. Talk with your doc, maybe he will agree to al least yearly scans. Try not to worry, it will all work out.0
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