Is My Oncologist Too Agressive?

Anonymous

Is My Oncologist Too Agressive?

Anonymous

 Or should I be glad that he scared the hell out of me?  I know I've brought this situation up on another thread about my fear of bone mets,  but this is what happened Monday. .....

I had an appt with my onc on Monday because I've been experiencing bone pain all summer that has suddenly worsened over the last few weeks in my right rear hip area and upper thigh bone.  I've thought that  this was attributed to being switched to generic Arimidex "Anastrozole" and mentioned this to my onc.  He wanted me to come in to see him because of the pain.  When my DH and I met with him he had me show him where I was hurting and he seemed to suddenly become concerened in his demeanor and said to me " He's not heard from anyone about the anastrozole causing such symptoms  and that he wants to look into this further because it is his job to keep  any cancer from travelling, thats' why I am coming to the cancer center and he wants to order some specific scans"  Then he he tells us he wants his 2 girl in the room also to make things simpler, so his onc nurse is brought in and another girl, with a pen and a pad and he tells the onc nurse he wants to order these tests because of the bone pain I've had.  The onc nurse and the other girl had a serious look and then he starts rattling off all the tests he wants me to have and the girl is writing.  Then he got a 3rd girl in to make sure my scripts were changed back from the generic with the pharmacy.  Then he tells me and my DH, he wants these tests done on me, and the Insurance companies doen't like him but he does't care he wants them done.  Now I'm thinking to myself, S#(T what the hell is going on with me?  So I go to scheduling to get the appts for the scans and they said I would have to come for 5 days to the hospital to get all the scans done.  My DH asked he they could schedule an number of scans on the same days because we travel over an hour and half to get up there.  So the schedule was made up for next week to come up on Monday, Wednesday and Friday for a whole itinerary of tests.  Now I'm freaking out because on Monday my first test is at 7:45 AMand here is the itinerary of what my Onc wants done:

Mon:  7:45  MRI SHOULDER LEFT W/WO

         8:30  MRI SHOULDER RIGHT W/WO

         9:15  MRI CHEST W/WO CONTRAST

Wed:11:00 CT CHEST ABDOMENT PELVIS W/CONTRAST

        11:30 PET CT SKULL-THIGH INJECTION

          1:00 PET TUMOR IMAGING PET/CT SKULL-THIGH

          2:00 MRI LUMBAR W/WO CONTRAST

Fri:      9:00 NM BONE SCAN WB

          12:30 MRI HIP RIGHT W/O CONTRAST

            2:45 MRI PELVIS W/WO CONTRAST

So this is my week next week at the hospital.  I am so not wanting to do this and I am so sick of what BC has made of my life.  Am I being overtested or is this a real legitimate fear my onc has?  He is  a Breast Cancer Oncologist and he knows this disease, and gives seminars everywhere,and that is why he was recommended to me, but has anyone else gone thru this with their oncs being overly aggressive with testing and is this worth it???

Barb

chrishat

hi barb,

i'm so sorry you're having a scare! were you scanned when you were diagnosed? if so were those scans clear? i was diagnosed in december and scanned from head to toe at that time, and when i think of how they were all clear it helps me relax, but i'm not sure how long that peace of mind is good for, since it was all nine months ago. it sounds like your onc is just being really vigilant, which is a good thing! i am constantly freaking out over misc aches and pains and i am thinking i would like to have so many scans done, to put my mind at ease. just think how great you'll feel if they all come back clear . of course the whole process is totally scary and nervewracking....i will say some prayers for negative negative negative scans. hopefully you'll get all the results really fast and won't have to wait too long. thinking of you, keep us posted.

christine

littletower

You're right, it's scary as shit and it totally sucks. But as much as it sucks to have to deal with all these tests and then all the waiting for results, I would prefer an agressive oncologist to a passive one. This disease is a monster and he's right that his job is to keep you disease free. I say bite the bullet, lean on your support system, trust your Doctor and go ahead with the testing. Good luck, I'll be thinking of you and praying it all turns out ok.

chrishat

ps how weird that my font is so huge...sorry! have no idea how that happened!

KerryMac

Barb - I don't know, but it seems like a lot to me. Why wouldn't he just start with a general PET, or even just a bone scan, and follow up from that if there is anything suspicious??

It seems like an awful lot of testing to do right off the bat. I can understand all the MRI's for clarification if anything suspicious shows up on the PET, but it is an awful lot to go through when in all possibility nothing is going to show up.

I've only had scans at Dx, and even then I only had a Bone scan, Chest X-ray and Abdominal U/S. It seems like overkill to me. 

208sandy

Hey Barb:

 No he's just being an onc - a concerned one at that - that said I had so many tests during July and August this year that my whole summer was ruined - BUT there was nothing wrong - I consumed more than my usual once a month ration of Ativan (1 pill) but it was worth it I guess - I had tremendous bone pain - hips, lower back everything from Arimidex and Femara so keep your chin up and I'll keep the good thoughts that maybe everything is just fine - my onc. also had herself, a resident and a nurse in one of my appointments and a clerk waiting outside the door with a list of appointments - it is very frightening.

hugs, Sandy

Lowrider54

With the pain you are having...I would have gone in and ASKED for a full body PET scan and just an fyi anastrozole is the active incredient in Arimidex - the generic has the same active ingredient but some have had issues with the in-active ingredients that allow it to be generic.

Hang in their - I would prefer to have the approach you are getting than a 'lets wait and see' and try treating the pain. 

Best wishes to you...LowRider

KittyDog

I would think he would start with one major scan like the bone and then order the others if needed.  My only other suggestions is that if insurance is paying let him do all.  If not I would ask if he could wait on the MRI's.

Good Luck and wishing you a healthy outcome.

Medigal

I'm confused here.  You are worried about too many scans and I have NEVER been scanned even when they first discovered the bc.  Is this something they are supposed to do normally or just later if you have specific bone pains?  I always wondered how they could know if it was any place else in our body if they only concentrated on the breast.  Maybe you are lucky your Onc is doing the whole 9 yards on you.  For better or worse, you will at least know what is going on and it can be found before it gets worse, IMO.  Best of luck to you.

Cowgirl13

 I'm sorry that the nurses looked at each with such serious expressions.  That was very unprofessional and I can totally understand that that would bother you.  If it had been me and that happened, it would really freak me out.   But that said, I would also prefer an aggressive oncologist to a passive one.  Good luck with next week and please check in and let us know how you are doing.

1Athena1

I am not knowledgeable enough to give an opinion on whether this is too much (you onc may suspect an x factor and be anxious to rule that out - ie: no mets, but something else?) - but I, too, am amazed at the difference in practice guidelines governing how people are scanned. Since my BC saga began, I have had the following: 1 Mammogram, 1 US 1chest/breast MRI and then surgery and that is it.

On the other hand, I haven't had pain...

I really hope your onc just wants to be able to give you a definitive answer of what the pain is, and that the answer begins, "NO, it's not mets, it's (unrelated and treatable)" It would make him a good physician - finding out not just what it isn't but also making a thorough differential dx.

apple

oh .. best of luck Shana.

on the website for Arimidex (and others) bone pain and back pain is mentioned at every site.  hopefully it is not cancer.  .. (we always assume the worst).

Important Safety Information About ARIMIDEX

• Prescription ARIMIDEX is only for postmenopausal women. ARIMIDEX should not be taken if you are pregnant because it may harm your unborn child
• Based on information from a study in patients with early breast cancer, women with a history of blockages in heart arteries (ischemic heart disease) who take ARIMIDEX may have a slight increase in this type of heart disease compared to similar patients who take tamoxifen
• ARIMIDEX can cause bone softening/weakening (osteoporosis) increasing the chance of fractures. In a clinical study in early breast cancer, there were more fractures (including fractures of the spine, hip, and wrist) with ARIMIDEX (10%) than with tamoxifen (7%)
• In a clinical study in early breast cancer, some patients taking ARIMIDEX had an increase in cholesterol. Skin reactions, allergic reactions, and changes in blood tests of liver function have also been reported
• In the early breast cancer clinical trial, the most common side effects seen with ARIMIDEX include hot flashes, joint symptoms (including arthritis and arthralgia), weakness, mood changes, pain, back pain, sore throat, nausea and vomiting, rash, depression, high blood pressure, osteoporosis, fractures, swelling of arms/legs, insomnia, and headache
• In advanced breast cancer trials, the most common side effects seen with ARIMIDEX versus tamoxifen include hot flashes, nausea, decreased energy and weakness, pain, back pain, headache, bone pain, increased cough, shortness of breath, sore throat, and swelling of arms and legs. Joint pain/stiffness has been reported in association with the use of ARIMIDEX
• ARIMIDEX should not be taken with tamoxifen or estrogen-containing therapies

Twylight

Barb, don't we all wish we had this splendid doctor?  How very lucky and blessed are you to have a doctor so overtly concerned with your well being!  It is without a doubt that if the tests are necessary for diagnosing you or deciding the next steps towards keeping you healthy, I say unquestionably be tested.  If your doctor isn't profiting directly from the tests, then it is highly unlikely that he will order more than you actually need.

dlb823

I don't know, Barb ...  on the one hand, I think it's wonderful that your onc clearly listens to you and is reacting with some serious testing.  On the other hand, the number of tests he's ordered does seem a bit unusual.  For example, have you complained about head pain?  If not, why the skull scan?  Do you think maybe he's just going to cover every possibility, in an effort to give you some lasting peace of mind going forward? 

The other thing I'm wondering about (although I have no medical knowledge regarding), is giving you 5 contast IVs within a few days.  Is that okay and safe?   Just asking, since I think that contrast dye can be hard on our kidneys.  I'd definitely want some assurances re. getting so much of it within a 5-day period.     Deanna

pip57

I have to agree.  That seems like overkill to me.  These are not just passive tests.  Does he make money off of the tests he orders?

pupfoster1

Hi Barb,

Sheesh, what a laundry list!!!!  I am on the fence with this.  On one hand you want him to take your pain seriously, but like some of the other ladies have said, why not a PET?  Although with the PET (which I had through my primary care doc) my BC surgeon said he really didn't like those, that they don't show much---frankly he may have been right in my case as my primary tumor was HUGE and the PET didn't show the lymph nodes either.  

If it were me I'd try to get a hold of him over the weekend (have a list made ahead of time so you don't forget anything) to clarify WHY so many different tests, and about the contrast issue.  

Keep us posted---(((Hugs)))),

Sharon

Anonymous

Right at the moment, I am sitting here at the computer and very miserable with the pain.  It's been there all damned day, and now it's really got me concerned.  I've been taking excedrin and that's not working.  The pain is in my sacral area of my lower back and I've been on a heating pad on and off today. In the past these have always worked to get rid of anything like this but nothing has worked all day today.  I do know what back pain is because i've experienced my share of it over the years.  I've dealt with herniated disc in C4 & 5, I once got a fractured pelvis on the inside of my sacral bone from a fall from my horse while riding.  Ouch that hurt!  I landed right on my A$$,!   I've also had muscle spasms from too much working in the garden,  over the years, my back has not been spared.  So I was wondering if the recent bone pain was the Arimidex flaring up old injuries or whatever.  But now Im really scared because it's just not going away, and I feel worn out from it.  Today I was thinking that at least after all these scans, I will know if it's bone mets or just some previous back injuries and arithritis setting in.  You never know any more after breast cancer and menopause.  Just hate this friggin worrying.

Barb

AnacortesGirl

Your last post says it all.  Something is wrong and you need to get to the bottom of it.  Yes, it's a lot of testing but isn't it easier on the mental/emotional side to get it all done with at one time rather than stretching it over weeks or maybe months?  It could be a couple tests, wait to see the doctor, hear those tests didn't find anything, go for a couple more tests, wait to see the doc, etc.  It won't be fun and you definitely need to take your ativan.  But you'll get through it and he'll get some answers for you.  Remember that it is always, always good to find out what it's not.  And I'm really hoping for you that it is not bone mets.  Like you said, it could very well be old injuries and Arimidex.

Your post also reminded me of my recent incident where my head got all spacey and then on my drive home I ended up hyperventilating, had to pull over & park and had to get help calling 911 so I could get to the ER.  When I talked with my onc he totally understood the hyperventilation from the anxiety of what I've been through this past year combined with the cold/sinus infection that had been hanging on for so long.  But he didn't believe the initial "spacey" symptom had anything to do with the sinus infection or a reaction to the meds.  Later I asked my husband why didn't he just lie to me and tell me that it was from the sinus infection just to make me feel better?  Instead, he left me worrying about it.  My husband pointed out that the one thing my onc has learned about me is that I always want the truth and that if it later turned out to be something else that I would loose confidence in my onc because he lied to me.  It's no fun when the onc is concerned, but I would take that any day over one who is cavalier about our situations.

Sending more hugs!!!

Anonymous

It's another day, and I spent the day out with my DH doing some shopping, lunch with my daughter and her boyfriend and walking on the boardwalk by the beach.  I have been aware of the constant pain in my lower back and am really worried what this is now.  I woke up with the pain and it has not let up all day.  I am totally fearing bone mets now.  The way I feel is glad that I'm getting all these scans.  I'm really scared guys.

Leah_S

Oh, Barb, I wish I could just hold your hand and help make you feel less scared. I can't do that, so I'll put it this way:

I am now on the Stage IV forum and I DON'T WANT TO SEE YOU THERE!

Praying for a different reason for your pain. Something fairly innocuous and very treatable.

Leah

Anonymous

 Awwww, thank you Leah for your prayers and kind words.  I so do know what a wonderful group of women you are over there on Stage IV, you all move me and inspire me.  Deep down I always imagine I will be there one day and that's just another path I will walk maybe.  Leah, I didn't get a chance to say it but Happy New Year, hon.

Barb

lauri

Looking at your MRI schedule -- I'm guessing that they'll do the three scans without contrast then put in the contrast and do three scans WITH contrast (so you might only get one dose of contrast)  I hope they already got your blood draw to check your kidney function, because otherwise your whole Monday schedule may be delayed several hours to wait for test results (happened to me)

FYI, I'll be having two MRI's with contrast on two days in the same week but they swore that one blood test will cover them both.

Just make sure you hit the bathroom before you get in that MRI machine -- you may be in there for a long time!

chrissyb

Barb, yes to you it does seem like a lot of testing but for your onc, hats off to him by the way, it is important to know that the cancer has not gone any where else.  The only way to do this is to run these tests.  It has got to make you feel better knowing that your onc is on the ball and really cares enough to do this.  Prayers for you that everything is just fine, please don't worry, the pain just maybe bone pain from the A....all be it pretty severe.

Peace, strength, love n hugs.  chrissyb

Anonymous

lauri, I hope your MRI testing goes well.  I know I hate the contrast.  They gave me 2 bottles of that white stuff to drink YUK.  But I'm feeling today that's the least of my problems.  I woke up really in pain this morning   and having a hard time moving around.  My pain is radiating up my spine from the sacral area.  It hurts to sit here at the computer too.  

Chrissyb,  thanks for your kind words. This is just so wierd, but I'm already mentally trying to prepare myself for bone mets, because this pain this morning is really intense just getting up from a chair, or out of bed, or from sitting to standing, it doesn;t seem right to me that I feel this way. My lowere spine feels like someone has their fist around it and is just twisting and pulling and punching, and I'm visualizing little electric shocks coming out of the spot where it hurts the most.  I'm dreading getting on and off the scan tables tomorrow.

Barb

apple

ok.. i do have mets.. but i've had my share of good news too.  i always go into a frenzy of fear and panic before tests.. there is little i can do, to avoid it.

best of luck Shana.. i have the feeling you'll be ok.  you already have back injuries and i would bet it's just another... perhaps relating to the fractured pelvis (from the horse).. the old injuries have a way of hanging around.

AnneW

I lived with awful hip pain for a year and a half. Walked with a limp, took Darvocet some nights because it would wake me up. I never once thought it would be mets--and when I stopped my Aromasin, it went away. But I had regular xrays, a trip to the orthopedist, and was ready to get an MRI...

Scans for scanning's sake isn't good medicine. I would think a PET and a bone scan would be logical places to start. I hope your insurance pays well--or you'd be paying huge out of pocket costs for these. Something abnormal will show up somewhere--and it will increase your anxiety and may not be related to the pain your'e having at all.

I'm wondering why and MRI of the LS spine wasn't added to the mix? You could have some disc compression causing your symptoms.

Have you talked with your onc about using a different AI?

Just my two cents, that's all. I wish you the best. Scanxiety is tough. (And, drink TONS of water to flush your kidneys from all that contrast dye!)

Anne

Polyana

Barb,

Don't worry. I am positive that you will hear the good news, and you will share it with us too. At least having those tests done, will give you comfort and relief. To know where you stand wrt your treatment is a great achievment and progress in itself. Never think of the negative stuff, always be optamistic. We have a saying that goes (never assume, or think you are sick, as if you do so, you will truely be sick).

Hope you all the best of luck, and waiting to hear the good news from u.

karen1956

Shanagirl............(((((((((((((((((((((((HUGS))))))))))))))))).....Karen

Bugs

Hugs, Barb!  Thinking of you as you get ready for a tough week.

Frankie_

Barb,

Sending you positive thoughts and hoping you have peace after all these scans.

Love each day...

Frankie