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Topic: I need all your help on questions to ask onc pleas

Forum: Stage IV/Metastatic Breast Cancer ONLY —

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Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Jul 3, 2007 03:21AM

Ter wrote:

Tomorrow Tues July 3rd, Im going in for a full body bone scan, I hate those worth the passion, especially the 3 hr wait til they do the scan...but what i NEED very badly as my onc. just sorts of ignores me, or thinks Im just looking at the web..well heck yea, as I dont get real answers from him and here on bc.org I get all sorts of things...so what Im asking for is questions to ask my onc..as tomorrows scan will be done and the week after, as Ive been waiting 2-3 months to see my onc..and dont want to miss anything ,that I should ask, please help me out on this as I ususally write out questions everytime I go to any doctor, as I dont want to miss anything, as it takes forever to get an appt with him....sure I can go to his PA, which Im beginning to like, and get more our of her than him..

So if you would please help me with questions to ask, as the mets are in my hip, and now he's telling me they are "sleeping", not doing anything, not growing or shrining, but he seems more concerned about my pelvic and my heart and lumps we found that were "suppose" to be negitive a while back, and I havent seen him yet, just the PA...

Thanks ahead of time, as I really need it.
hugs
Ter
It's better to be effective than it is to be right.-
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Jul 3, 2007 04:39AM Shepgirl wrote:

Get an Onc that will not ignore you. You really need to feel comfortable about this relationship and this person is fighting for you!

More bone mets stayed stable for about 14 months on hormone txs. Stable is not a bad thing but yes, missing other areas is not good.

BTW- You really need a PER/CT full body to get the entire picture. Have you been offered one of them?

Good Luck
Dx 12/23/2004, IDC, 2cm, Stage IV, Grade 2, 2/22 nodes, mets, ER+/PR-, HER2-
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Jul 3, 2007 06:01AM jacqniel wrote:

Terri, 2 to 3 months? What is that about? Since I have began this journey in December I have only seen a PA once - and that was because my onc was out of town! I agree with Shepgirl. You need a different onc.
Jacque
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Jul 7, 2007 06:51AM GreenHeron wrote:

Another voice for suggesting that once you ask this onc all the questions you want, go find another!

Flashdif
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Jul 7, 2007 07:05AM RLA13 wrote:

Hmmmmm. First off, it isn't his concern if you go on the internet. That shouldn't be a deterring factor at all.

I am not sure what a PA is, but you need to see your onc more than a 3 month interval?

I am in Canada, so I am not sure how your system works in terms of getting another doctor or switching? It sounds like if you can change, that is what I would have to do!

I am not sure what else to ask? I am not sure your history. Were you thinking what next in terms of treatment?

Let us know and hang in there.
xx
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Jul 7, 2007 11:21AM Shepgirl wrote:

Ter - this article might help with the questions/signs of a bad Onc

http://www.mamm.com/highlights.php?&...Issue&seq=2
Dx 12/23/2004, IDC, 2cm, Stage IV, Grade 2, 2/22 nodes, mets, ER+/PR-, HER2-
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Jul 7, 2007 02:44PM katie11 wrote:

Hi Ter,

I'm afraid I have to agree with the others here - 2-3 months without seeing your onc?! Ignoring your questions?! I would also suggest finding a new onc. Certainly, one question you could ask is 'why are you quite clearly so bad at your job?' LOL!

Good luck,

Katie xx
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jul 14, 2007 11:37PM Ter wrote:

Thanks you guys, Im horrible at getting back to my ? I may ask, so what i did was I saw the button to "save" like this section in my "home box" then its there so I can go back and know what and where I wrote it..

I had my scan, and yes I still have cancer, not cancer but secondary BC as after bilateral one in Nov 04 and otehr Nove 05....then Nov 06 found it in my bones in my hip...they kept an eye on it with visit to onc once a month and if onc couldnt be there his PA "physicians asst" was there, use to not like her, but this past year, I really made an effort to look at her good qualities and so has she as we talked about it....Oh yes I have had several scans in past 2 years or so PET, bone, MRI, CT, many blood test CBC and tumor markers, and who knows what else...Lots of Xrays then following more MRIs and CTs. And each was handled a bit differently.

The mets in my bones hurt like hell at times, and I stay on my Dilliaudid all the time, as it also helps a bit with all my RSD reflex sympathetic dystrophy, in my left foot really bad, along with fibromyalgia thru whole body...
and I had sprained my foot in March and it was a bad sprain and orthopedic has me in a boot, and yea he wanted to see me like in 3 wks and still the same, but since then I have overdone it and have had many other twist and turns on it, then that accident I had here at home really did me in, it not only scarred me, as everything fell on me while I fell, in a little corner filled with card table adn all my craft things including a big paper cutter adn my bad foot well the big toe on the bad foot stopped me from going thru a big glass window, but Im all banged up from that, so I have tons of bruises etc, even on my collar bone..Im just a mess...

Anyway I did see my onc just this week as the week prior I had full body bone scan, which he said I looked good, and my tumor markers were great, as for past quite a few momths had kept going up and up....which scarred me to pieces..since its summer i had on peddle pushers as the boot I wear works with it good, and other leg has tons of bruises plus up and down the arms and even the collar bone...when the onc saw me, he asked what happened...I told him and asked if he wanted to see the rest, and he said no, as my orthopedic is doing that, when I make that appt..Im just babying it trying to anyway, but it shocked me that the bruises on my arms etc really grossed him out and he actually got a queezy stomach, I really laughed, I had my sis there as she was in town and she takes notes in there of everything....I we discuss. I questioned him how he became a doctor if he was so queezy and he said thats why he chose oncology..hmmmm ok, he said he'd never be a good surgeon due to that..makes sence, but it seems to me a dr is a dr, and now adays there are so so too many specialist out there, that if you go to a dr and even mention something little like a sore throat they want to refere you to a specialist...why cant there be one dr only..well to a point..Im so sick of too many doc's and none of them communicate wtih each other...Should an onc want to know what has been going on like this bad accident of mine? OR should I just had kept my mouth closed, as to me, it would seem like maybe since the fall was so great and kept me down and even still down, along with the foot thing, I would want to know if a patient of mine had simular things happen, as it seems like something may pertain to my BC. Like I had mentioend long ago here on this site that I had tried to see him one time as I was having problmes inside certain areas and they were painful and had to go thru the triage nurse and explained to her bla bla bla, and she said to see my pain doc....well my pain doc is giving me quite enough stuff, and I really didnt need more, I wanted someone to check me out a little, and my next appt that was on my list of ?to ask him and that visit my sis and dh were there and I let him know of the insident, and I was in a wheel chair, and with the other 2 chairs filled as I have rough time getting on the table, and those rooms are small..when I asked him he said "Terrie, when you have pain, dont call on me" my reply back then was "then what the heck do you do"? NO reply....as I did post this question quite a while back as I know alot of you might not have read it....

Oh yea, each time I go to ANY doc, I write out questions and make a copy and take them w/me, with enough room between each one for answers...ends up that apprently my questions seem to run together from what he says, so maybe one question I had as #2 went with #8. So I am prepared.

All this comes to point and yea maybe I am venting, not really wanting to, just trying to add to this question of what was up there....

I trust my pharmasist more than a doc when it comes to my meds or other things medically, my pharamists is an old good friend from high school and they all know both of us down there very well..and many times as so many doctors have no idea what your taking medically for maybe your taking heart or depression etc. meds..but I know my pharmasist always catch it...they might call and say, why did your dr Rx you this med? as your allergic to what ever, as they keep track of this stuff, and they know what should go with what and what not to eat or drink w/certain meds..doctors do not, well most don't or even look at your chart to see what else your taking and for what, isnt that what a chart is for?....and they the pharmasists have cought MANY wierd things as with dh and I we should of taken stock in our drug store for as many Rx we have purchased and we have to pay upfront the full price, then get reimbursed maybe months later. But I do know that every Rx a dr prescribes they get a cut in $ for it..and I hate and will tell the doc I dont want to change, its like "if it aint broke why try to fix it" and if you look in my chart and actually read it, and consider yea I am a very complex patient....

Kind of like the last time I saw my pain doc who is at the cancer center also, dh and I both go at,the same time to save time/energy and gas, and they had just gone thru changes in employess and doctors...in past month we have had 3 new docs, and my dh's orthopedic left the private practice he was parters in due to all the BS and time doing so many meetings etc, and told us that he was sorry but he went to school to help people and was going to work for Kaiser and leave the paper work for those who do that..and the pain center first had their main pain doc leave as they had him working so hard, he hadnt had vacation etc in 13 years, not my problem..but he took a month off to think and rest about it, and left and also went with Kaiser...along with 2 oher of the pain doc's who we loved...so we go in this last time few wks ago and 2 new pain docs..NOW, he walked in, introduced himself, and I was the first as dh was in same room for his appt..the first thing he said as I have to X the places where i hurt on my body on this sheet of paper, well i just X out the whole body...lol and he said, I know Im new, but your taking nada nada, and i hate to be the new doc that comes in and changes your meds...as if he would of looked in my chart and to see what all i was allergic to in pain meds and quite a few other things then he wouldnt of upset me so much...then he kept on with me taking Fetanal patches for pain...well I told him as its also in my chart that i am highly allergic to it with my heart as i had it before and ended up in the heart hosptial for 2 weeks....he also did this with poor dh..

ok Ive blown off my steam....but still overall yes i have this cancer in me and ive been on PC for so long, but i still have hope, and i wanted to keep tabs of it. And when first diag I didnt know any better, yes both dh and i were blindfolded and really were not explained alot or had any idea of the questions to ask..and yes they had a short little "class" with me, my mom before her stroke and my dh in there, and yea all 3 of us were clueless, and were given literature etc, but it wasnt enough...and Im sure you've read alot about me since i began a couple years ago, but now I read so much and yea I still get questions from others, not just you guys, which have helped sooo much, but others, and I tell you and them whats going on.
and yes I have hung on to a prayer and hope all this time, and yea I do know my body when things are not right, we all do. And yea sometimes I feel very unsure and so many here know alot, and I know we are not dr's, but sometimes I think Id rather go with someone like some of you, that really want their patient to know what exactly whats going on. Not just "your cancer is sleeping" and "whena dog is sleeping, dont wake a sleeping dog"...well if I hadnt woke up my sleeping dog that i tried to for 4 years where would I be now? As in 99 I had a lump, size of a marble, then in 04 YES I had my mammos every year prior, and in 02 they did a core biopsy, which I dont beleive in now, as it does NOT even looking at the screen see exactly as it can miss it by a land slide, and it was every year and thru the years my boob was an A cup, hard to miss what it looked like..I should of taken pictures, it looked like a little boob with a bagle inserted in it, you could even lift it anywhere, but oh no, just by looking it was a "fatty tumor" where is this going, and Nov 05 Is it by the grace of G*d that I am still here, and that the chemo "slipped" when the port a cath broke at the beginning to almost make me loose my life prior to BC?

Just questions that I know can never be answered, and here in town alot of people go down to the LA area "los angeles", but I am unable to travel those 2 or so hours and my dh is unable to drive that long with his health.

My internist is good and I love him, he has been very good to myself and my family...and even him has made mistakes which I know daily he thinks of, but you can't go back, only forward...only Im having a tough time going forward, and feel like im on a treadmill going nowhere. NO I will never be like I use to, due to age, and bc and many many health problems, just kind of want to be maybe more reassured...and yea 4 months seems great by me as I hate going to doctors anymore...thats why I know there is no reason to go back to my orthopedic as I resprained it many times, what can he do about that except charge me more money, and some day I wont have the funds in my insurance..

Today I had a good day, for what all that is worth, it was worth it to me, as I dont have too many of them and cherish any one of them that I feel half normal. Somedays are walker days and some are wheelchair days. So much has happened during my journey with BC, and none of them fun, let alone reassuring.

Sorry for making this so so long and I know this wasnt the whole topic of the conversation, but it kind of fit in a bit....don't you think?


I just edited my spelling and again Im sorry this is so long, but I had to kind of explain.

Not that I wouldnt want to see another onc, but there really are not anymore...sure there are others there at the cancer center, but words travel fast there and I see by other things that have happened what happens to the patient/'ts when one gets pissed or changes..

Thanks for listening "reading" me. I really appreciate it.

I dont think there are answers to what I have written, if so let me know.
hugs
Ter
It's better to be effective than it is to be right.-
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Jul 15, 2007 03:48AM ming wrote:

Ter I'm so glad you poured out your heart. I've been through the frustration of an onc I only saw every 3 months - and last time she set me ahead for 6 months. I have changed oncs and am glad. It looks like that may not be an option for you. I see you have many complicating factors and you AND your dh have health problems. I will be praying for you and him.

One thing that sounds good is your old friend who is your pharmacist - like a guardian angel with a great overview of your treatment and meds. Also your sister as someone who is a little separated from your pain and difficulty to be an advocate and a support for you. And the PA could be someone who will become part of your solution.

I too struggle with how and when to ask questions and being poo-pooed about treatments I have heard about on the internet. Something I am going to try is to send a fax with questions on it. I have done this with our regular doctor. Better than email - I've never gotten an email for any docs but fax is always available. There is not time in dr visit and there you are sitting down in a gown and they come in fast and professional. This is just and idea - I hope you have a fax machine available - I will pray you do or will because this could be a help. The PA might be one who could get an answer for you if you fax question.

ANother question for you: What kind of insurance do you have?

I hope some others will read your post today and have some ideas.
Ming - my grandmother name Dx 10/17/2005, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR-, HER2-
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Jul 15, 2007 06:33AM LuAnnH wrote:

Ter,

I changed onc within my practice. I felt my first onc was a very intelligent woman but I could not handle her bedside manner. Luckily for me she changed offices so that was a no brainer. I told them I did not want to go downtown and choose another onc that was at that office. He has turned out to be wonderful and I have no intentions of leaving this guy. Now if my situation gets dire I will not hesitate to contact the other onc or have him consult with her about what other options might work. I think you should stick to your wheelchair for a little while and let your body heal. I know the RSD can be a bear let alone the fibromylgia & bone mets. Take care!

LuAnn
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Jul 16, 2007 08:49AM RoxanneNJ31 wrote:

You really need an onc that is going to take your concerns and feelings seriously and especially make you wait 2-3 months for an appointment. That should be illegal and should be against their ethics oath they take as a doctor. Whose running the show here anyway. You are the patient and the one who needs the special and contsant care and if their practice cannot handle the load then they should not be doctors.

Sorry im venting it pains me to see us cancer patients treated as second class citizens. We need to remind these doctors that we are not obligated to go to them for treatment and like anything else without paitents there would be no business for them.

Take care and god bless.

if you need questions please feel free to contact me via pm because ive been through the ringer and back.
Dx 6/5/2007, 4cm, Stage IV, Grade 3, 2/30 nodes, mets, ER+/PR-, HER2-
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Jul 31, 2007 08:11AM A-M_Higgins wrote:

Ter-

skimmed the portions about perhaps changing oncs, but you would be SURPRISED about how little it matters to the onc - it is YOUR comfort level that is important, so if you want an onc to whom you can ask more questions, you really should gather the courage and simply call another onc, and call your onc's office and ask for a copy of your file, INCLUDING office notes... You should do this for yourself - it's about you and not the onc - I get a second opinion each time and I always have to ask for my file - I fee weire (can't help it - that's my nature), but each time it's been handled merely as an office matter and I still feel comfortable with him...

Keep us posted... A change in the practice group sounds intriguing...

Regards,
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Jul 31, 2007 08:33AM Marsha56 wrote:

Ter-

I think you need to take with a patient advocate with your insurance company or the hospital. You need to be heard, I had this problem not long ago and flat out told my doctor that when I call and need anwser I want it now! He talked with me and explain that I need to be honest with him regarding my pain and other issues??? So I have been honest and it has been great. I am know heard and not poo-poo away!
Marsha56 Dx 7/25/1996, IDC, 6cm+, Stage IV, Grade 3, 17/21 nodes, mets, ER+/PR+, HER2+

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