No exams in 12 months, I know why now.

[Chelee]

For the ones that followed my posts about how upset I have been with this onc that will *not* exam me at all. No hands on...I mean never! I've been with her 12 months now & can't get her to check my axilla's, mastectomy scar/area, lymph nodes on either side, superclavical area, nodes in neck...nothing! (Remember I am a stage III'er, positive nodes, her2/neu 3+++ & NO rads.)

I just got ALL my records including "progress notes". Got these via the HMO. They had asked her WHY she does NOT exam me? She told them since I have under-developed ribs on the Rt. mastectomy side she feels its a much more comperhensive to go by the scans. (Like the side I have the under-developed ribs is an excuse NOT to check *any* part of my body.) Give me a break! I've been seeing doctors for YEARS. Regular doc's, GYN's, Orthopedic's, Neuro, Pulmonary...they ALL have examied me through my life with NO problems at all. Those couple under-developed ribs on the Rt side doesn't affect or change anything! Everything else is very normal. Ridiculous! My surgeon never has a problem checking me out...even the RIGHT side. He's the one that found the seroma on that side with no problems. So I will never be examied I guess and thats alright with them. (Sorry, mainly venting) Just got these notes today.

Chelee

[Belinda]

No wonder you're upset Chelee - what are your options for getting a new onc at this stage? My GP gave me my path results that I felt my surgeon had been holding back on - that was a real turning point in my relationship with my surgeon and my sense of being in some sort of control of my diagnosis and treatment (at least in terms of making my own decision about how much info I wanted and how I would respond). We worked that through and he now treats me less like a mushroom, I trust him more.

So, I'd encourage you to think through your options without (of course) jeopardising your treatment. And act on the option(s) that you feel right about.

And venting is fine - go girl. We all need to do that to stay sane.

B

[Sherryg683]

Sounds to me like she just doesn't want to take the time to do it. I watch some of the other Oncologist at the place where I go, rush in and out and spend very little time with their patients. I would confront her with this and let her tell me this bull to my face...sherryg683

[StephN]

This is why we love you Sherry - you have so much common sense!

I too can be on the confrontational side - gently, of course. But when I have a question, I ask it!

Getting the chart notes is the best way. Just have to point to that section and ask for a BETTER explanation. Like "is this a reason not to check for nodes in my clavicle area??"

Chelee, is there a clinic or hospital DIRECTOR who will take your case seriously, as you deserve? No "mushrooms" allowed here! No kidding - just get hold of the person who is the top over your med onc and ask for a meeting or phone conference. Fax the person the part in the notes you want to address, plus report that you have not had the kind of exams you KNOW are the norm for followup.

If you get NO satisfaction, tell them you will find treatment elsewhere.

P.S. Do you have a surgeon who is following your scar areas? Most good surgeons want to see you at least 2 or 3 times during the first year after your surgery.

[MJo]

I wonder if your oncologist needs a therapist. A doctor who doesn't want to touch her patients...

[rinaina]

Chelee, I am sitting here in shock over this. I never heard of a onc that wouldn't examine you by touching. This is ridiculous. I would look into changing onc's if it is possible without causing any other problems. I just can't believe it.

[Chelee]

Belinda, My chances of getting a new onc at his point is nil to none! This place has DENIED *every* request I have made. Even for a 6 month mammo, a rads onc 2nd opinion and a change of onc. I don't know what their problem is but I CAN'T do anything here. (What are they AFRAID of?!) I have a RIGHT to change onc if the one I have will NOT answer questions OR exam me! Now that I have ALL her progress notes I can prove it. She buries herself with these notes, they prove everything I was complaing about and then some! But she actually said due to my deformity there is no reason to exam me. I'm insulted! She's a doctor...there is NO excuse for NOT examing me. Talk about a poor excuse!

I'm also not very happy to read all her notes and see HOW many things she did NOT tell me about. I told her from day one I WANT to know everything concerning me. She did like exactly what your surgeon did to you...hide things from me that I had to find out another way.

Belinda, I have already jeopardized my trt by filing a grievance about this onc. My life has been a living nighmare since then. They treat me awful since I did that. I'm on their sh$% list. I was told they can NOT retaliate against me for filing a complaint...but thats NOT true. Your life is over if you carry out any grievance or complaint. They want me GONE. But will only LET me go to the ONE place I said I CAN'T drive too. (Tell me thats not on purpose.) I keep calling and trying to find the one RIGHT button to fix this mess...but these people are un-touchable. The HMO and group can do what they want to a cancer patient. (Its all I can do to deal with my bc and my Moms newly DX of advanced lung cancer...now they enjoy being cruel to me when all I wanted was the NEW onc that joined the group...thats NOT asking much.

Chelee

[Chelee]

Sherri, I do plan on confronting her. But since my grievance I have to be SO careful...as they want to make things up to throw me out on the street to make and example of me for filing a grievance. (I mean...how dare me complain about an onc that won't exam a stage III bc person.) I TRIED through 3rd parties several times to have THEM intervine on my behalf to see if we could work this problem out LONG before I ever filed the grievance. Nothing helped so I felt I had no choice. But I really am sorry I ever did it...my life has been rough enough since bc...this has just about killed me. I loved all these people down here...now they are told to give me the cold shoulder and to ignore and avoid me so I will go else where. Its really cruel.

I don't see my onc till April...and I will ask her why she won't exam me? I am not going to tell her I have her notes just to see if she tells me another story? (Unless I get a letter from them throwing me out on the street soon...nothing would surprise me.)

Chelee

[MGordon]

Lisa's Onc and/or his PA "touched" her EVERY week! This is just part of being a good and compassionate doc! There has to be something we can do for you! The relationship between ANY doctor and their patient is just that - a relationship - and especially so with this insidious disease. Maybe it's time to divorce this onc!

To be blunt - screw their attitude about your complaint! Happy customers rarley complain! Do your job and treat and diagnose - treatment and diagnosis is a "hands on" experience - get with it! I am so mad for you I could spit...

Love and Light
Mel

[Barbara2]

Why did your onc pull the Zoladex and Femara?

Could you see your family physician for resolution to some of these issues?

[Belinda]

Hi Chelee - I am so sad that you're getting the dismissive treatment you are getting. Cancer can make us feel powerless enough, and it sounds like your 'team' is only ading to that.

I am reluctant to suggest this, because I am so tired of people sugesting books I should read. (I now just smile blankly and say "gee thanks - I'll give it some thought"). But my (hypno) therapist has actually loaned me a book called "The patient from Hell: How I worked with my Doctors to Get the Best out of Modern Medicine and How You Can Too". Stephen H Schneider. She loaned it to me when I was agonising about how to handle my surgeon. Said it helped her stepson navigate through a bout of terminal illness. I will get round to at least skim reading it before I send it to her, so IF there is anythin useful in it I'll send you a line.

Meanwhile, take care, and don't be afraid to keep demanding what you need. Sounds like you can't make them treat you worse, they can't throw you out, and the squeaky wheel approach has it's uses...B

[Barbara]

Chelee:

My oncologist only checks my heart, lungs and liver and run labs but I saw my breast surgeon every six months for two and a half years and every year since and she exams my chest wall, the scar line, and the nodes under my arms, near the collarbone and in my neck. Her exam is very complete. Do you still have follow-up with your breast surgeon?

Barb

[Chelee]

Mel, Thats what I *tried* to do...switch onc. They will *not* let me. I even filed a grievance to change & was denied. Then I filed an appeal and they denied me AGAIN. They said as long as my onc is happy to treat me I have to stay with her. (This ought to be illegal.) I wouldn't want to switch IF she was answering my questions and examing me. But now that I got all the documentation back from the HMO about my grievance and appeal...I have a right to amend all the records. You should see all the lies the case manager from this place put in the notes for the HMO about me. I am furious! Whats funny is the onc's OWN progress notes proves everything I've said from day one. The case manager told me in a flip tone over the phone...all she wants is me happy. I said very nicely, "Ok then...let me change to Dr. Smith". She says you can't. I said then you DON'T want me happy.

Soon I bet they send me a note to leave and get care eles where. I don't suggest anyone ever file a grievance...because its not true that you won't be retaliated against. I can't imagine being examed weekly like Lisa was. Wow...I would be happy with once every 3 months. Thanks for your reply and support Mel. I appreciate it.

Chelee

[Chelee]

Barbara, Yes my surgeon is the only one that will check me. He has no problems with it. He's the one that found the seroma I complained about. I've asked him several times to check my lymph nodes on my neck and by the clavical. He has no problem with my anatomy. I dont' see him as often, but when I do I have him check me out since she won't. This is just un-acceptable I have to stay with her. But I can't find anyone at the hospital or otherwise that will help me?! I've called everyone. The power these people have are unreal.

As to the Femara...I was getting upset with her games each month. I am PERI-MENO. She knows it. I need the Zoladex to keep my estradiol under 20. But EVERY month when its time for my next zoladex implant...she WON'T give it to me. She wants me to do labs and WAIT for the results. Which leaves me about a WEEK unprotected with my estradiol climbing fast each time. She does this every month! Last time it was up to 46. So then she left order for the NP to give me the 3 month dose except no one told me. It had ONLY been one month I asked she check my estradiol...it was already 24 and I had TWO more months till my next zoladex. So she told me to just go off my Femara..that its NOT working for me and she hung up. (Talk about ticked off.) Its not the femara not working...its the games she plays with giving me the zoladex. She sees every single month my estradiol climbs so fast. She will tell me each time "Chelee..your right...you are all women." Argh! So once she pulled me off no mention of anything else so I am getting a ooph asap. For now I am totally unprotected & she could careless.

Chelee

[janet/FL]

Chelee
I am so sorry for your predicament. Your onc should be run out of practice--lisence lifted. I know how you feel. I had the "nurse from h*ell". Since she mixed my chemo, I actually thought she might try to poisen me!
Since your surgeon examines you, hands on, could you have the surgeon send her a copy of his examins? This would tell her that you have been examined--hands on. Now she may use this as an excuse, but you would also have this as fire for your complaints should the HMO ever ask.
Hugs,

[Chelee]

Janet, My onc *already* knows my surgeon has examied me with no problems. I've told her when he found my seroma in my chest and had it drained. In fact they are all in the same small building. He keeps her informed on what he does with me. (She just had no idea I would get all those notes I'm guessing?) She just doesn't want to make time & uses that as an excuse...a poor one at that.
The first onc I had there which was new had no problems...nor does the NP...only my onc thats been practicing for 25 yrs. With 25 yrs behind her...she should have less problems then the others.

Janet, I can relate to you thinking that your nurse from he$$ might poison you. Its a pretty scary feeling. I know that feeling...the only difference is...its not my nurse I am worried about. Someone else! It makes you feel like you have to be so nice to them when your sitting there wondering if they would really risk everything to harm you? I'd like to think they wouldn't...but sometimes if their mad enough you can't help but wonder?

Chelee

[janet/FL]

Chelee
I also had a gynocologist that seemed not to like to examin or talk about a gyn examination! It was like the parts of a female body were best not touched or discussed. I think because of this, my endometiral cancer was not diagnosed sooner. I had to switch doctors to get a diagnosis and that was probably when a first year med student could have made it!
Can we make a doll we can poke pins in?
Hugs

[Kaye]

Hi Chelee, just wanted to say that after reading your posts I had some thoughts about what might be going on. Perhaps your onc doesn't feel confident about what she does or doesn't feel and whether or not that is significant. Another thought, even if she did feel something--perhaps it is policy only to dx on basis of scans. Would it be possible to get a 2nd opinion?
From my experience w/bc I have learned that dx of mets seems to be a somewhat complicated process for which there does not appear to be a standard protocol or procedure. Some of what I am about to share is not exactlty related to what you have experienced but exemplifies some of the complexities re. dx. of mets.
There was a time when I was experiencing horrific shoulder pain, and 3 different dr's told me they felt swollen node(s) under that arm (non-malignant side). I also had a bone spur appear on the shoulder. I was given alot of mixed info. Oh, and a tech reported that my bone scan showed "unusual hot spots."
One of the dr's to whom I was 'erroneously' sent--a rheumatologist (and that was because the mri said what I had could be compatible with rheumatoid arthritis--even though the symptoms did not correspond with that--and did correspond with what one would feel if one did have bone mets), because the rept. mentioned that, I was sent to see the rheumatologist. The rheumatologist was horrified when she heard my story. She said the most important thing involved whether or not the cancer was back. She tried to order a new mri which even showed the lymph nodes. That order was somehow altered--despite letters and phone calls to correct. The MRI was eventually done but did not show that area. I learned that after another MRI had been done and report said it was unable to compare lymph node area because the MRI that was supposed to have shown that did not. In fact, that MRI was done with a special screen so that area would not be shown. Too weird.
Meanwhile, my onc (or should say former onc) wrote a letter to the rheumatologist. She said that she was basically ordered not to order any more scans because "she" did not know how to interpret them.
There is a lot more which includes fact that I was sent to my primary care dr. who initially gave me shots of cortisone before finally sending me to orthopedist who ordered MRI. The orthopedist said he did not think that I had rheumatoid arthritis and thought the pain was coming from something in my neck. When I asked if he was going to discuss t hat with my primary care dr., he said "no," because the MRI was for my shoulder. So, I told that to my primary care dr., and he sent me to the rheumatologist (because the rept had mentioned rheumatoid arthritis--which I did not and do not have). And, when she tried to help, she figuratively got her hand slapped.
Welcome to the world of "Managed Care--NOT. Now, realistically speaking I am not sure what was done was best or not. I am being treated as if something is going on--even if not yet declared. Perhaps with the convoluted insurance laws in our state, this may be the best option that I have to get certain treatments at this point in time.
What the dr's have to deal with re. insurance is absurd. That's a whole 'nother issue. Here, where I live, it's almost a 'catch 22' situation. Bottom line, though--I was given Herceptin (supposedly out-of-protocol), although I am not so certain it WAS out-of-protocol, BUT I AM still around to share my story.
On another note--around the time I was dx'd--or a little before (or even a little after), another gal who is insured by same 'non-profit' hmo was dx'd with similar type of breast cancer. She had a CT scan which was clear. (Mine showed a lesion in the liver--never quite identiified). She went to an advocate who recommended full body MRI. That showed cancerous lesion(s) in her liver. She received treatments for that. Well, about a year and a half ago, her husband shared that he was writing his last post to the involved news group he was on. It had been a year since his wife had passed away, and he was getting remarried.
I guess there are lots of ways to evaluate. Would she still be around if liver mets had been dx'd at a later time? Or would she still be around if she had had a different treatment--i.e. some type of focused radiation or even surgery--which is not standard protocol for liver lesions for bc mets? If she had gone through a different type of insurance she may have been able to have gotten a different type of treatment. However, if it is not standard protocol, and the involved medical facility does not do this treatment, they are not required or held liable to diagnose. If any of the above could be a possiblitiy, perhaps the involved protocol used by the medical facility, was the best that they could have used to extend her life--not necessarily the best of treatments--but the best THEY could offer at the time for which they would be accountable.
I have spent a great deal of time over the past almost 6 years trying to learn everything I can about breast cancer. I have become both outraged and humbled by what I have learned. Things may be very unfair--about who gets what and when. The dr's themselves don't always know. There is no sure way to predict how one will respond. Even dr's don't always get the 'best' treatments or have the 'best' of options available. Some do. Some don't. Even with the 'best' of treatments, cancer can recur. And, just maybe, there are better ways to treat that have not yet been fully researched.
Once metastases are dx'd I was told that I would receive only "paliative" care which appears to be consistent with currently approved treatment protocol. In other words, I could not receive surgery that would be aimed at extending my life nor even one that could possibly 'cure.' There are politics involved--there has to be because of all that is required--establishing 'protocols' for a given type of cancer is just one example which involves so many different aspects. I, myself, am involved in something, presumably related, that seems to have 'political' overtones, which is too complicated, overwhelming, and seemingly unfathomable to get into here at this time.
Chelee, again, I am sorry that you are having difficulties with your oncologist. You might be more comfortable getting a 2nd opinion and/or switching dr's. My best thoughts are with you, and I hope my 'monologue' wasn't too boring, overwhelming, or strayed too far from your concerns.
Off to get more 'real' work done...

[G. Ann]

My HMO oncologist has only physically examined me twice--at the initial intake visit when I was healing from the mastectomy and 2 years later when I told him I thought I had another lump. My "hands on" exams are done by the surgeon or the OB/GYN. For my oncology office visits, blood pressure is taken, occasionally temperature, and current lab work discussed. Two other women I know at the same HMO but seeing a different oncologist have had same experience. I'm wondering if oncologists do physical exams as a routine office visit.

Hope you find a good response to your concerns.

[Chelee]

Ann, I am sure all onc's are different and do things their own way..but I did ask on another board how often their onc exam them? I got alot of replies. Most all of them got examied at each and every appt. A few women were making jokes that they were getting *felt up* more then when they were dating. lol But seriously...some say they not only get examied by their onc, but their surgeon & GYN. Everyone said i need to change onc if they aren't examing me. There were a couple women that said they only get checked at the 3 month exam. (Which even that would make me happy.)

All I know is I could not find one person that said they weren't examied in a year by their onc. My Mother goes to the same place I do. She was DX with advanced lung cancer recently. She has this new guy that started there. He spends time with her...exams her at EVERY visit...talks to her about all her concerns...and EVEN shakes her hand when she comes in. The only exams I have gotten is when I ask my surgeon too. Thank goodness he will. It gives me some peace of mind.

Chelee

[Val Pfeiffer]

Chelee--
Of which HMO are you a member? I may have a contact there (I am in sr. management in an HMO in Wisconsin). If there is anything you think I can do, I'd be happy to help (although if you're in a large, national plan, I probably won't have much luck, but I'd be willing to try :-)

Val

[Chelee]

Val, I belong to Blue Cross of CA. The lady that handled my grievance was truly *trying* to help me & now her boss or someone has told her to *redirect* me back to square one. I think she felt sorry for me because she talked to me enough to know what I was saying was all true.

Its usually a matter of finding that *right button* to push . If I could find that right person? These people at my group don't realize...I don't want trouble or lawyers...I just want to get the same trt anyone in my situation would get & then go home & live my life. All this stuff consumes me & sucks the life out of me. They are killing me! I just don't understand how they can get away with retaliation? Even the lady that did the intake on my grievance will validate to *anyone* that calls her the FIRST thing I said to her when I called was, "Are you *sure* this won't make things worse, because IF it will, I DON'T want to do this"!! She said "No, it certainly isn't suppose too". (Later she even apologized for whats happened to me...she feels horrible.

Since your work in management maybe you know who I could talk to that really might care & could help me? I'm at my wits end. Blue Cross is large as you know so I am not sure if you could help or not? But the fact that you offered means the world to me. That is beyond sweet of you! I just can't thank you enough just for offering to help me. If you have any ideas I am all ears. :) Again, thanks a million for offering to help...what an awesome women you are.

Chelee

[CLTann]

Chelee,

I am furious in reading about the outlandish behavior of your onc. I wonder this HER2 Support goup leaders can write to your doctors about the weird and perhaps unethical behavior of your onc as a formal protest. Bigger voice is power. For a doctor who doesn't care about her patient is criminal and a breatch of their oath. We might even threaten to sue in the name of this fine group. Keep your cool and hope you do well physically.

[Chelee]

CLTann, You are using the RIGHT word when it comes to the way my onc has treated me...it IS "criminal". Thats why I really do not for the life of me understand how they can get away with this?! What bothers me even more...if they are doing this to me...you know there are others. And most will NOT speak up & go as far as me & just take the abuse. That is why I would love to find a way to straighten this out...no one going through cancer trt deserves to be treated this way!

I know when I was first DX and I was NOT getting answers to my questions about what her2/neu, herceptin, Er & Pr status, FISH test, you name it! My cancer team started telling me to QUIT spending so much time on the internet...that is was NOT good for me. I let them know nicely it was the ONLY way I could find out anything. How many of you were told NOT to learn what you could about your DX, her2 status, etc? I bet not a one of you. Even all the books I was sent from the American Cancer Society said to learn all you can and stay involved. I told them knowledge was power and it made me more comfortable to understand all this. They said actually it can be a bad thing too. Ha. They really have a problem with me staying on top of things....and actually they SHOULD like it. Every place else likes it...not mine it seems.

Thanks for the support CLTann.

Chelee

[JJalive]

I suggest that you ask to see your surgeon every 6 months - your surgeon will probably be happy to do the physical check. My surgeon has found 2 different tumors that my oncologist and I never found. I think the physical check is one of the most important.

[dhealey]

Chelee,

How your onc is treating you is inhumane! I would contact the insurance commisioner and complain because you do have the right to a second opinion. I would also contact the medical board in your state and explain how your onc is treating you. When they take you on as a patient you are entitled to competent treatment by the doctor. If not satisfied you have the right as a patient to seek help elsewhere. Best of luck.