STEAM ROOM FOR ANGER
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Lula: Excellent points about many drs being the "nerds" and the socially awkward ones who never learned good communication skills. Imagine having Sheldon Cooper from The Big Bang Theory as your MO, ha ha.
In my limited experience, the jocks and cheerleaders tend to go into sales, marketing and other "people" oriented jobs because it just seems a natural fit for them. One of my daughter's high school friends is going into medicine, and I PITY the patients who will eventually see her. My daughter feels the same way. Hopefully this young lady will focus on research, but I doubt it.
They just don't teach "bedside manner" classes in med school. I'm definitely NOT trying to defend these bullying and/or condescending drs, but that's the way it is. Plus, drs only have about 8-10 mins to spend w/each patient, and that's got to be frustrating.
My clinic has these plastic holders with "grievance forms" in them all over the place, so negative experiences with drs is no doubt a common problem out there. Doesn't excuse the behavior, but it helps to know it's not isolated to one provider/medical establishment.
We all have our horror stories. My MBC was delayed being dx'd for months because my bitch PCP refused to do the appropriate tests even tho I insisted. I'm no longer seeing her, thank God.
L
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Jaycee- you can always ask your GYN to contact the IntraRosa rep and arrange a discussion with their medical liaison on how it works exactly. Most docs hear the estrogen part and automatically say no. It’s a vaginal suppository that works only on certain receptors in the dermis. The tiny amount that they have been able to document crossing into the bloodstream is not even at a level any lab drs are using can even calculate and even at specialty labs it’s minuscule and considered not a clinically significant change. For all these reasons plus a few more is why it doesn’t have the same warnings as say the Estrace, Vagifem, and all the other creams/tablets. It’s only been out 5 months. When I was diagnosed in Jan, my GYN even wanted the mirena removed due to the small localized hormone amount but was just fine with the intrarosa today (they had just had their education session on it a couple weeks ago.) it was originally recommended by the OB /GYN who did my hysterectomy in NOLA. Ive been researching it since he suggested it after a long discussion on ER+ BC and options for vaginal atrophy
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My plastic surgeon is a first class Dick H., he is so full of himself. I am sure if I had any complaints or concerns he would be super defensive. Lucky for me he did a good job. Not sure I would go back though. I am not going to see doctors that are not compassionate and treat me poorly.
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There are sadly many doctor bullies, both nerdlike and not nerdlike, often pushed for time. There are also nurse bullies ( or more commonly and more annoying, indifferent nurses), who refuse to call a doc when they are over their heads. Sometimes they bully each other! And then there are excellent , professional, caring people, still here, usually overworked, we just have to find them.
Doctors and nurses in some areas and fields also face ongoing, almost daily abuse by patients who are bullies, (not just assertive patients, but actual bullies, like patients who call them the N word or degrade the docs' intelligence, e.g., say their advice is "stupid", make unreasonable demands, or even assault them., Medical students and residents now have teaching modules in some places entitled "The Hateful Patient" which try and teach the young docs how to retain professionalism while dealing with patients assigned to them who continue to insult them, do not comply with appropriate recommendations, abuse their time with frivolous emails, are perpetually late, are sexist, etc. They often land up trapped having to see such patients, as they are now, due to financial pressures, mostly working on salary, e.g., few docs are left in true private practice anymore where patients could be "fired." And more and more of us patients are stuck having to deal with big health care consolidated bureaucracies, following endless multisource rules, so we also have less options, and firing a whole medical complex can have financial consequences or create geographical care problems.
We have to fight for our loved ones and ourselves to get the best care we possibly can with the limitations in finance, geography, communication,and time that we have, each of us different in how much effort we can put into it. It is exhausting.
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I really just put up with my PS's attitude because he had such good ratings from other patients. He did a good job I guess that is what really matters but wow he is arrogant.
Hi Lita, good to see you posting. I am kind of upset with my youngest son. We tried calling him for a couple days ago, no answer. Tonight I had to call my oldest son to see if he knew what was up. He said his brother just doesn't feel like talking, didn't know if he was depressed said he was ok. Makes me mad 22 years old just pick up the phone and say a few words to us. Ugh.
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meow-I feel your pain on grown children not picking up. Have you tried texting him? This generation of young adults seems to prefer communicating thru text even when they’re not wanting to talk. My DIL won’t ever talk on the phone. It’s text or nothing. Its frustrating, I know.
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no answer to the text messages. Today he finally texted my husband and said he will call. I think he has depression issues.
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This talk of rotten docs brings to mind the time I was pregnant, had a new doctor, asked him some question or other and he snapped at me that he was 'not going to sit around rubbing my vulva.' I was so shocked, so horrified, I leaft with my outh hanging open. By the time I got home I was mad. When I got up the next day I was mad. And when mad carries over beyond one sleep, then it is time for action. Often my mads flare and then fizzle. But when they don't fizzle, time to meet it head on.
I went back to his office the next day and laid it on the line. I said, "your comment yesterday was offensive and inflammatory. If you have a problem being my doctor you better say so right now so we can make other arrangements. But if you care to continue being my doctor words like that had better never come out of your mouth again." I left the ball in his court. I stated my case, I left the door open for a graceful exit if that was what he wanted. He apologized. He said I was right, he was pressed for time and snapped at me when he had no business doing so. It didn't make me like him any better, but I did feel better about myself for stopping and saying, oh no you don't, buster, I don't care who you are, you put your pants on the same way I do, one leg at a time, so you do NOT get to talk to me like you have the authority to do so!
Here in Canada we don't often sue doctors, but I sure would have liked to sue that sonofabitch after he botched my daughter's birth (left me home in labour for 3 days telling me I had a bladder infection and put me on antibiotics when in fact my water had broke and by the time my kid was born, battered and bruised 3 days later, things had become an emergency !) I know doctors are just people and prone to bad days, but along with book learning comes the absolute requirement of people skills and if you don't have both, go be something else. I think we need to speak up on our own behalf, I think it's absolutely reasonable to ask some professional, hey, what's your deal, did someone shit in your Shreddies this morning because you're sure dumping hostility and attitude on me! It may not correct the doctor, but I hate myself when I stand there and take it. I don't anymore.
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Lita, so good to see you posting. I was in agreement when reading and saw the comment about your pcp. I started laughing and scrolled up to see who wrote it. Should have known it was you!
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runor, what a horrible experience.
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Lita - it is so good to see you on hear posting...I am rallying for you and always glad to see you on here.
Hugs to everyone on here...
I wish I had more time to post...but in homework hell with my DD. (The poor thing just got over the flu and is slammed with homework!!! Ugh!!!)
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good discussion I missed reading most of it on times, been contemplating my next move.
I am switching to another oncologist hopefully at the same center.
Sorry, typed in iPad and it changes my typed words atnwill like that. Tried to fix all the mistakes.
Janet, whatever we write we have to be prepared for it to go unread and end for it to be tossed on the floor and stomped on in front of us. I am going to write to this onc w my concerns and reasons for transferring. I will limit it to three each so as not to take too much of his time, ,lol. The story is on the liver mets tread. How are people with liver mets doing?.... It's pretty grim, this new onc's opinion. . But I do know moss will not grow under my feet ever again. Not where my life is concerned
I had to write a doctor once, my primary oncologist I chose. His staff was the problem. I didn't name anyone but I did give dates and times in case he wanted to see who did what. I told him in the letter that I couldn't sleep and though we had moved through the trials I had I felt concerned there were other patients who could not find the strength to tell him or contact him on the side. I gave every problem, mostly that I had called the phone nurse to request the he, my onc, approve a PET CT scan. I was in trouble and knew it. I was told not once but twice that he declined my request. Two different nurses. I cried. I begged aand told the nurse there were lumps in my neck, i couldn't breathe right. But she said he was quite adamant on his decision. My hubby called his private cell the next Friday morning without my permission and diplomatically told him I was being ignored by "all these doctors" and needed a scan. My onc had me in a scan first thing that Monday. I had cancer lymph nodes everywhere. My right upper lung lobe was collapsed from airways being closed off. Dr. G went to the hospital board and demanded a nurse navigator to be certain this did not happen again. He got her same day and I was the first patient that Tuesday. Quick work. Still the issues kept me awake at night for weeks and I wrote to him, gently but plainly on what happened. When I made mistakes too, like not using the private number sooner. My theory on the mystery of him not getting his messages from me is that his actual nurse was giving the non-order, no scan. But no one was pointed out.
I just loved that oncologist. When he decided to pursue complementary cancer training in Alaska I cried. He wasn't perfect but he is a gem. He will be a better oncologist for this, I know. He told me once that he is learning to listen to his patients and not the scans or tests first. Never did he discourage me from my complementary choices. He listened, he explained maybe too much for time allowance, he kept me on the schedule with added time because he knew we would get off course I think. Sometimes Hubby and the onc and i would talk for half an hour about complementary medicines and choices in other countries. Not perfect but sorely missed now. No wonder I am floundering.
We have a great group here. I so appreciate being heard and all the stories and the anguish shared. Could not imagine going through this without all of you.
Diane
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Well, I took a stab at ONE letter. I doubt I could write three or even two. This is either to send him, where it may be intercepted by someone else and he never sees it, or read to him by me at our next appointment, where he will say, "I never said that or did that." That's been his reaction in the past. I'm going to that old place where we always go. This was my fault, right? I'm neurotic, crazy. I went to my PCP Monday. She and her nurse were very sympathetic and understanding. Since she is a first year resident, I also have to see the attending. A male. He said I should talk to my MO and explain how I feel. That he would understand because he is a very caring doctor. My MO is a professor to the attendings.
Here is my first attempt. I just tried to be totally honest. The last sentence in the first paragraph will have to be deleted, I know.
Dear Dr xxx,
I was stunned when I walked out of our last visit. I can't figure out what I did to make you so angry. For the last year, I have barely taken more than five minutes of your time at any appointment. That is the only time you seem happy when we part company, when I am in and out quickly with no questions and no discussion. I'm not sure I can survive another meeting with you under these conditions. I am petrified to say anything and find it impossible to respond to your anger. I am an intelligent and articulate person but your anger turns me into a flustered mess. I'm seeing my therapist this week to seek her guidance. I've seen her only rarely recently but this issue is weighing heavily on my mind. Maybe I am feeling overly anxious and being overly sensitive and I want to work on that. I assume you would totally blame our dysfunctional relationship on that. I respectfully disagree. Some of it has to be coming from you.
You said you would "set me up with another doctor." I hope that would mean a doctor within your practice because I love your support staff and would hate to leave them.
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KB870, thank you for your input. I like your edit to that sentence. I do have several very good doctors, even here, a place I like to call "the black hole of medicine." Unfortunately, several of my good doctors have left the area or retired. I do hear even worse stories from people in all kinds of places, even big cities. At least I don't have any long drives. I never have to leave more than thirty minutes before an appointment because nothing is more than that far away from home. I'm seeing my urologist's NP this afternoon and I'm going to try and not mention the MO at all.
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I second KB870's opinion. Good letter.
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Anytime a doctor offers to set us up with a different doctor wouldn't it be great to have that instant gumption to say, "Yes, please do. I will make my choice and be back to you within three days." And walk out. Oh how I wish I had it in me. And without being angry, just yes, please do.
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Janet - could it be the letter can be that simple.
"You once offered to set me up with a different doctor. Yes, please do. I have chosen ______ and expect this to be arranged for my next appointment to be with them within ___ weeks. or by January ____."
I'm still working on my letter. The words appalling and deplorable came out of me, hahaha
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we lost a patient yesterday. She was 28. Found out in October that she has cancer, after losing a baby. Came in for chemo on 10/30, eggs frozen so she can have future babies, and it only went downhill. This is the third unexpected loss on our unit in two weeks. Going to work is HARD! Never mind that my shoulder and armpit pain is now all the way down my arm. What gives??
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Swess, that is heartbreaking. It must be so hard to do what you do. I hope you know what a difference you make in the lives you touch. Have you been evaluated for lymphedema? Breast cancer - the gift that keeps on giving! Sending you hugs.
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Oh Swess, that is so hard. To be in a cancer center or unit has to be one of the most heart-wrenching positions anyway and to lose a young woman who was trying to become a mother. The staff at the last center I went to had a quick turnover so they would not burn out on grief alone.
The pain in your arm and shoulder. I had that. For me it proved to be one of two things: 1. lymph node masses in the supraclavical had grown large and together, pushing on nerves. 2. I also had a collapsed lung lobe on same side which presented as back pain on opposite side. Radiation in broad basin for supraclavical stopped the pain within three days, so that was probably it.
I suggest a scan of the lungs to be more secure. There is a scan that can find lung cancer even before it presents, that is available through Goshen CC I know, don't know where else.
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Janet, I told my DNP about the visit with the new onc. I asked her opinion on the flack I could get from requesting a transfer to a new doctor within the same center. She said it is a matter of chemistry, if we didn't click then I couldn't work well enough with him to manage my health and life-saving efforts. She usually takes about 30 min w us, she is on the ball, a mover and shaker. We had our issues long ago but like I said, no one gets a perfect one. But we do deserve a lot better than you are getting from yours. And me from mine.
My letter hits the talking points but I am not good at editing wordiness. Hubby is helping. I need this done for morning to deliver to his office and to get in to whomever is in charge of getting me to a different doctor, probably him since he is the director of oncology there. But he should be able to put his ego aside for my request. So a short short w the exact wishes for that person or if it is him The longer point driven letter for him which I will have a coy of for my new choice if there is any flack, I will use it in some form so get the heat off of me. oh bother, said Winnie the Pooh.
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My polite letter ended up being this:
Since you are the director of oncology, I assume you would handle my request both as the director and as my oncologist. Either way, the request to my oncologist would be enough. I did not have any hope of a need to go to the director.
My request is to be assigned to Dr. S A. I feel I need to see him within the next two weeks. I have been recovering my strength since ceasing Xeloda. But I feel a need to move quickly into a new protocol. Afinitor will not be one of the choices after all. See reasons.
A discussion is not necessary for me. The time we spent was enough to know I need a different outlook and approach to gain the best quality of life.
I am also wondering if you consulted with the oncologists who specialize in liver lesions and with I B, the advanced oncology certified nurse practitioner. I was hoping for time with her, though I forgot to mention that.
My hope is you will read the concerns and reasons for this transfer.
Also, I want my medical file corrected, see page four.
Sincerely,
then my concerns and reasons are on two pages. Mistakes one page.
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Concerns and reasons - I had to keep knocking the snarky bitch in me down and taking control..... to any who are interested. Sorry for monopolizing
Concerns and Reasons
You told me that no one in your care with liver lesions felt like I did, they were functioning fine and walking around. Which brings me to the American Cancer Society liver cancer symptoms. Mine included feeling full after a few bites of food, liver pain, exhaustion, losing weight without trying, nausea, vomiting, swelling in abdomen.
Also, I was still on Xeloda chemo pill, a loyal eight months, and was extremely dehydrated, exhausted, dizzy, nauseous, absolutely could not eat more than a few bites at a time, lost 23-pounds in three weeks which all smacks of toxicity. This was missed, in my opinion. I had hoped for a fluids IV the day I was there. I was thrown off my points too easily, but this was one of the needs I had, that being palliative care. Now being off the Xeloda for twenty days, I am finally eating more at a time, moving more easily and feeling stronger.
At the beginning of my first appointment you were challenging me on "all the oncologists." That affected the remainder of the discussion in my focus, talking points and memory. For the record, I have had only one primary oncologist, Dr. M G, who sent me to one researcher in Indianapolis and to one in Fort Wayne. Then two traveling oncologists who filled in when my primary moved to Alaska. And my DNP who has been there since the mass was found. And her referral to one oncologist before Dr. G, consulted for tests.
In your notes on my appointment you wrote, "She has been offered combination everolimus and exemestane. While reasonable, this would not be my first choice but she wishes to try this." This was not clearly communicated. I asked what is recommended if I didn't use the Taxol and you enthusiastically said you would choose the same as Dr. D. Very misleading. Especially after I felt you discouraged me from using the chemo infusion due to my condition.
You wrote, "The likelihood of benefit is rather small." This was left unsaid. I am reclaiming my life and to know the treatment option I had just chosen would be "benefit rather small" is appalling and deplorable, in my opinion.
On the subject of Afinitor, the common side effects are ones I can take little chance with. Pneumonitis in 19%: I had this during summer and could not use corticosteroids to recover, I am allergic to prednisone, proven with hives and heart palpitations. Lung collapse: My right upper lobe was collapsed for a year, just recovered around July 2017. New or worsening cough: I never stop coughing. Patches or sores in mouth or throat: There is a large thyroid nodule compromising my throat and swallowing. I told you of that from the beginning and was trying to tell you I will need surgery and to get a referral to Dr. _______ . Impaired wound healing: Afinitor and thyroid surgery, not the best timing.
I am grateful 1) your office overlooked setting up my chemo training appointment and 2) the lengthy delay in getting the chemo drug ordered since my prescription card was not requested and 3) for the snowstorms that have kept me from pursing that therapy choice. This given your opinion on it's ability to help me and my deeper reviews of the side effects that would be intolerable or even life threatening if they occurred.
When I reminded you the two areas of radiation, you absolutely did not know I had had radiation. You were quite surprised, in fact. You then said that because of this you did not agree with the interventional radiologist report on, "mixed response" and you surmised that the Xeloda had not been working for me.
Dr. B______, my medical file was clear on radiation and the compressed airways, thus the rush for radiation treatment. I called Goshen Center for Cancer Care on Thursday, November 2nd. I was told by intake that by Monday an oncologist would review my medical records and I would given an appointment. I was told patients were taken in order of severity of case. On November 9th the records had still not been seen by you from what I could tell. I was finally given an appointment for November 22nd. There was sufficient time to give complete focus to my file details.
The standing opinion from your notes is I am already dying. But I just don't see my life that way. I want and need an oncologist to have my back, commit to my quality of life and even possibly to creating no evidence of active disease.
I wonder if you have so little hope for me that you did not consider the reasons I chose Goshen Center for Cancer Care. The SIRT treatment, their version of the pharmacogenomics program testing to decide which chemotherapy or hormone therapy would work best for me. After all, I had just spent eight months on a chemo pill that was, in your professional opinion, not working at all.
One more thought.
Why did you say we would do palliative care or the Afinitor / Aromasin or the Taxol infusion but not palliative with these choices? "Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care." But you led me to think that the palliative car would only be given with no treatment or hospice.
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Bluebird, I believe this oncologist will have never received a letter like yours. Great work but sorry you had to go this far.
Edited to add: http://www.sirtex.com/us/clinicians/about-sirt/
The SIRT treatment can be a palliative treatment....
Selective Internal Radiation Therapy (SIRT), also known as Radioembolization, is a liver-directed therapy for inoperable liver tumors. SIRT is administered by a specially trained Interventional Radiologist.
A microcatheter is used to deliver millions of radioactive microspheres into the hepatic artery, where they are carried into the arterioles and selectively lodge in the tumor microvasculature (for further information see Mode of Action).Treatment Goals
- Increase the time to progression
- Extend overall survival
- Potentially downsize or downstage tumors for liver resection, ablation, or transplantation
- Provide palliation of symptoms
SIRT can be combined with modern chemotherapy or administered as a monotherapy, either during a chemotherapy holiday, in a salvage setting or as an alternative to local chemotherapy.
Radiotherapy, together with chemotherapy and surgery, is a major pillar in the treatment of cancer. However, the utility of external beam radiation in the management of liver tumors is limited by the sensitivity of the uninvolved liver parenchyma to radiation. Selective Internal Radiation Therapy with SIR-Spheres® Y-90 resin microspheres offers patients an opportunity to access radiotherapy for inoperable primary and secondary liver tumors whilst sparing normal liver parenchyma.
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Bluebird, I wish I had the mental stamina to write a letter like yours. As it is, the puny one I wrote took everything I had. If I went back through my whole time with this MO, the list of offenses would be long and varied. I'm really afraid that yours will not take the time to read your letter or be able to accept any of your views as valid. Mine would deny everything like a convicted felon. I also refuse to take that much time away from living my life to deal with this asshole.
Good info, marijen. Thank you. When I looked up palliative care doctors in my town, there were exactly zero. I read an article once that said MO's pass their patients to PCP's at end of life.
My urologist's NP said that if I am having such bad sx, we should do a course of something. That number (>100,000) to dx UTI's is quite arbitrary and sx count more. I am taking 500 mg Cipro twice a day. The low-ish count (40,000) in my latest urine sample is STREP AGALACTIAE (GROUP
. Nasty stuff more common in pregnant women. About 32% of strains of STREP AGALACTIAE (GROUP are resistant to Cipro so I may be creating an even worse situation. But that means 68% are not resistant, right? (Leave it to me to see the bright side.) My bladder has been what is called "colonized" for a while. Unfortunately, my urine samples are so contaminated (from taking Letrozole), they don't run sensitivities for antibiotics. I need to have some urine cathed (which I have done in the past very successfully) to get a clean sample. I thought of that yesterday during the interminable waiting but by the time I was almost done, I was exhausted and it was after 5 PM. (Got there at 3.) This practice is run the old fashioned way. Providers spend as much time as needed with patients so they always run WAY behind. I have to be satisfied with what I'm doing and give it a chance. I really want to feel well when my son and his wife visit for Christmas. 0 -
I have a dear friend who is a nurse and when she was diagnosed with breast cancer decided she was not letting the doctors "bully her" as she put it. They are so used to just telling people what to do and how to do it and they all jump. She said no way. Think she had inside tract on that one.
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I felt a bit intimidated by my mo, he has the reputation as the best breast cancer oncologist in Seattle. He has many patients and some are in the latest trials. He really wanted me to do the chemo because he thought reducing my risk from 23% to maybe as low as 10% was worth it.
I took in as much information as I could and decided that my pathology showed a bit of a disagreement in what I received from oncodx. My cancer was more lobular than ductal and my er was 95% and pr non existent.
I only received oncodx number and er pr status, no more details. The pathology report after mx was so incredibly detailed and pretty much matched the biopsy pathology. It helped to convince me to forego the chemo. With my cancer it was not as well understood and there are fewer people with it.
Some people would throw everything at the disease only to recur or develop some other problems. I am a firm believer that we did better drugs and with a fairly high percentage of people, 20 to 30 percent that recur even after treatment, convinces me these drugs may help but sure aren't a cure.
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Janet, I know Dr B probably won't take time to read the reasons. In wrote it mostly for the next doctor to understand my transfer to him is not taken for little reason. Also in knowing how this once approached me on first appt likely means he has a pattern and reputation. If Dr B stomps non my letter I cannot be offended, I did my best, he didn't. I'm a writer at heart. Journalist background that helps me shoot out five pages in 20 minutes. Then I have to edit.
Janet, as long as your letter gets you to the next doctor you want, you are doing good.
Now I have to look into all possible chemo or endocrine therapy and SEs to choose some to go over with the new oncologist. Any suggestions? Anyone?
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Bluebird: what about the nurses or staff that ignored your plea for testing of the swolen nodes.? Practicing outside the scope of their license. The State Board of Nursing would be interested in this.
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meow a second opinion never hurts when you are making decisions on what to do. Bottom line is that everything has side effects. Cancer itself. Meds to treat even hormonal ones have their own set of issues. Only you can decide what is best for you.
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