I need to vent a little

nitewind · 01-15-2008, 08:08 AM

I know that everyone here is going thru some rough times and I'm sorry to lay this on you but if I don't get it out and get some opinions, I know I'll go crazy. Maybe you can tell me if I'm wrong or if I'm expecting to much or I'm to thin skinned.
I had two episodes this past week of shortness of breath and a total feeling of weakness in my arms and upper body. I went to my room and laid down and I either fell asleep or passed out, I remember coming to three or four times. This really scared me. I wasn't doing anything strenous at the time. The first episode I was still in bed and hadn't gotten up yet for the day. The second time, I was sitting here at my computer.
I put a call in to my oncs office and they gave me an appointment for yesterday. Dr. listened to my story and said "well, your lifting your arms now, there's no weakness". He listened to my heart for about 10 seconds. I asked him that since I finished the herceptin in Dec, did he think I should get an echo to make sure everything is okay. He said "no" no scans, no tests unless there are symptoms. Hello? I told him that I would feel better if I could just get checked out so he reluctantly had me scheduled for and appointment with a cardiologist. I then asked him, is there any way to know if all the treatments that I've had worked,(just looking for a little encouragement) he said "no, there's no way to tell, just wait and see". I also asked about having my lab work checked and he said, no need. From the examing room, I then went to have my port flushed. My favorite nurse was there and she knew that I was upset. Asked me what was wrong, I told her that the doctor is a freakin azzhole. She was pretty much in agreement with me, told me that's the way he is with everyone, including the staff, but that he is a very good doctor or she wouldn't be working for him. I just needed a little ray of sunshine, I've had a rough couple of years, between smashing my hip and the cancer treatments. Am I expecting to much from the doctor? I read that so many of you have such caring doctors. All I really wanted to hear from him is that we will get thru this and no matter what, we'll do what it takes and find out what's going on. I don't want him to lie to me, just give me a little encouragement.
Am I just losing it or what? He isn't planning on any testing at all, no echo, no scans, not even an x-ray.
I have learned one thing, if I have anymore symptoms I will call my primary doctor, I should have done that in the first place. He is very thorough and wouldn't just let it go. Guess I'm just feeling very let down and feeling like I'm out here on my own in unknown territory. I'm so glad that I have all of you.
Okay, I'm done with my rant, thanks so much for listening.
Hugs

Diana1993 · 01-15-2008, 08:24 AM

Susan, I believe you answered your own question. Since I live two hours away from my cancer clinic, I go to my family Dr. with concerns. She has picked up on some problems before scheduled tests. How is your blood pressure? Stress can play havoc with the whole body, so don't downplay the possiblity. Also, I didn't have the greatest relationship with my onc. but he has kept me alive for 15 years, and 7 of those at stage IV. and I trust him completely. He has tried everything to get me in the Tykerb clinical trial.
Hope this helps,
Hugs,
Diana.

Vi Schorpp · 01-15-2008, 08:27 AM

you're not ranting. My first impression is that you are correct -- I would see my pcp in these circumstances. Sounds like you have a better relationship and trust in your primary doctor a little more. The oncologist that treated you is not a warm, fuzzy, guy. Sometimes they are the greatest doctors but that doesn't necessarily translate that their people skills are the greatest. I guess you'll have to define for yourself what a great doctor is. Not knowing you, and especially not being medically trained, I would have said at the very least something along the lines that we've done everything recommended at this point and we'll wait and see if any further treatment is warranted at a later date. I feel for you and you are correct, we're all here for you.

nitewind · 01-15-2008, 08:30 AM

Hi diana, thanks for your quick response. The bottom number of my blood pressure has been up a little, 85. I've been taking a blood pressure pill everyday. The main reason I called my oncs office is because I can walk to his office and I don't always have a ride to get to my other doctors. I guess the part that upset me most is the oncs attitude. I feel like he just brushed me off. I've studied quite a bit about cancer and treatments in the last year and a half. He speaks to me like I know nothing about what I'm talking about, and that disturbs me. He is a very busy man and I understand that but I would like to tell him look, just look at me when you're talking to me and really hear what I'm saying. I'm not looking for fuzzy, cuddly and warm, just show some sighn of concern and compassion.

BonnieR · 01-15-2008, 08:51 AM

I think you SHOULD tell him that. Nicely. "Look at me. Hear what I'm saying". You have that right and it might resound with him. Even if it doesn't, you will have expressed yourself instead of carrying it around.

janet11 · 01-15-2008, 08:55 AM

Nitewind, I had something similar while I was going through chemo -- I had a couple "almostblacking out" periods where I had to sit or lay down or I'd fall down. Reported it to my onc. They did a MUGA scan but it was normal, so my onc told me to go to my PCP and they'd put chemo on hold until my PCP said it was ok to continue.

My PCP took me OFF my BP medication (for high bp) (turns out I was having periods of very low BP) and wrote up a note for me to take to my onc saying it was ok to continue chemo.

That's when I learned about how the doctors worked together: the onc does only the cancer stuff, but when there may be side effects or other problems, she refers to my PCP or a specialist.

FYI: I was off my BP pills for 6 months. Then went to a cardiologist and am now on CoReg and a much milder bp pill to handle both the low LVEF (as a result of Herceptin) and stabilize my BP again. Once that's stabilized, the BP gets handled/monitored by my PCP again.

Good luck,
Janet

suzan w · 01-15-2008, 09:31 AM

Hi Nite, thanks for venting!!! I think we all need to do that from time to time. It is SO frustrating to have this disease and then to have people, friends, family, medical community, not take us seriously. I know, for me, the thoughts of cancer are never very far from my mind and it is so wonderful to have someone come up and ask me, "Hey, how are you doing? Everything going well???" Hope your shortness of breath etc turns out to be something simple!!!

MJo · 01-15-2008, 09:41 AM

Yes I think you should get this carefully checked out; however, I got severe shortness of breath and nearly passed out during and for at least six months after Herceptin. It's a year and two months now since my last dose, and I can exercise and even dance without getting severely short of breath. I think it was side effect -- maybe my heart was stressed. Neither my onc or primary care suggested a cardiologist, so I waited. I'm happy to say the condition has improved, and I trust you will get better too. Still, a visit to the cardiologist can't hurt. I'll visit one myself if I think I need it, whether my doctors recommend it or not.

Mary Jo · 01-15-2008, 09:48 AM

Hi Susan,

I'm glad you got that off your chest and you most surely have a right to be upset. Not being taken seriously by your doctor is frustrating (to say the least) and to not receive some form of empathy from them is wrong. Don't get me wrong, I'm not saying "pity" (I hate pity) but a doctor with a caring, feeling heart is the only kind I could see.

As you said, you've been through a lot and that should be appreciated by your doctor. You are human - with real concerns. Cancer is scary - the prognosis for any of us isn't written in stone - it truly is "wait and see" and that in itself makes it a somewhat hellish disease mostly all the time.

So, if it were me, I'd have to find a different onc. I couldn't stay with someone like that. That in itself would add stress to my life and that you or none of us need.

I know that's easy for me to say - and hard to do - but seeing as you will be seeing an onc. for many years you have to think of your best interest.

My first onc. was considered "the best" also. She treated me aggressively, answered all my questions - was thorough BUT caring wasn't in her nature. I didn't see that side too often - thankfully - she moved on - teaches now at Mayo - my new onc. is also considered "top notch" which is only what I'd want BUT he also is kind, caring, listens and treats me like a human being with real feelings and real fears.

Good luck to you and praying for Peace to overshadow you.

Love,

Mary Jo

madubois63 · 01-15-2008, 09:54 AM

I've said it before, and I will say it again - get a new onc!! The nurse may think he is a good doctor, but he is wrong to tell you there is no way of knowing if the treatments are working. How did you find the cancer in the first place? Were there no CAT, PET or MRI scans done? I am scheduled every three months for scans to check for progression or reduction. The new scans are compared to the last scans. What is he waiting for?? Early detection is best!!!! TELL your doctor you want scans done. If he refuses again, TELL him to put his refusal in writing and you want a copy for you own personal files. As to your concerns, my best friend is switching oncologists in the practice (to mine), because her onc doesn't listen to her concerns. She has sat in on appointments with me, and my onc is more interested in her health than her own onc. I think your episodes qualify as symptoms. I tend to get dizzy and pass out when I am dehydrated. At the least, your doc should check your blood work to see if your electrolytes are good and make sure you are not dehydrated.

nitewind · 01-15-2008, 10:36 AM

Thanks everyone, it sure helps to come here and have someone understand what I'm trying to say. I hate pity and that's not what I want. You ladies are the best, thanks for helping me through. I'll keep you posted on what goes on from here.
Hugs

dhealey · 01-15-2008, 10:48 AM

Nitewind, First I would make an appointment with your primary care doctor, they should be cheking out your heart, EKG, Stress test, or Echo, alos check your 02 sats (oxyegen level) low potassuim can also cause these syptoms as well as low HGB. Then I would fire your onc. and get one with a caring attitude. Most times when I have problems I see the doc I work for before I call my onc. Doc I work for is the one who has ordered my CT Scans and Pet Scan and my tumor markers. I love my onc, but she too will not test like I think she should. Best of luck!

Barbara2 · 01-15-2008, 11:29 AM

This is a great place to share concerns and to vent from time to time, too. The odds and ends of information that come from the replies are very helpful.

I see my (retirement age) family physician for many concerns, some cancer, some not cancer. He is easy to visit with, easy-going, a good listener, and offers good advice.

He has far fewer patients than my onc, which in turn increases my comfort level because of his relaxed manner and ear for my concerns.

Sheila · 01-15-2008, 11:38 AM

Susan
It sounds to me like your oncologist needs an attitude adjustment! I try to be understanding, I am sure their job is depressing, emotional, but hey, we deserve individual treatment! Your oncologist is only as good as they are for YOU! It doesn't matter what their credentials, if they don't have time for YOU and your concerns, find another....you don't need the added stress! As far as issues with being short of breath, B/P etc, I would take these to my PCP, if needed, they can direct you to a cardiologist or order an echo, stress test etc.... As far as being short of breath...I am truly wondering...I was very short of breath after my last treatment, almost a heavy feeling on my chest. I questioned whether it was fluid, an embolism (us nurses make the worse patients) or some major cardiac problem....it is better now, but I did go and have an echo done...60% so thats not bad after 4 1/2 years of Herceptin. Alot of things can cause the shortness of breath though, B/P problems, CHF (usually you would have extremity swelling), potassium levels being off, low hemoglobin..... if you don't get your answer, have your PCP refer you to a specialist. If you want your scans and your oncologist won't order them, have your PCP do it...it is important that you get them done at the same place for comparison though.
You deserve to vent....keep on venting and they will take notice!

Mary Anne in TX · 01-15-2008, 12:08 PM

Susan, you're a saint! I'd whack him! He couldn't be so great that manners are completely eliminated. I depend on my doctor's caring and follow-up. I'm having an echo Monday because I'm still on herceptin and want to stay on it. I've never asked for a test and not gotten it. He keeps good track of me and my head and heart need that more than my ol' body!
Speak up for yourself and ask for what you need. Then take what comes and find what you need somewhere. You deserve the very best care always! Thanks for sharing! ma

Melissa · 01-15-2008, 12:41 PM

I would let him know that it's his/her job to prove to you that you don't have cancer or any other complications going on. You're not the doctor, he is!

Jean · 01-15-2008, 12:52 PM

Suzan,
Wow, your dr. sure sounds grim...like anything else this is a job, maybe
he is not happy doing what he does, like they say, do what you love
and you will be happy. Some dr. were absent when the class on bedside manner was given. Consider interviewing new dr. since it is most likely your dr. will continue to behave in his grumpy manner. He may be very good but so are other dr. who also care and are not afraid to show it.

What a shame that you have to not only deal with the disease but
also the grim attitude. Find another...and fire him...and also tell
him why when you fire him.

Remember you deserve the Best in care and treatment.
Hugs,
Jean

hutchibk · 01-15-2008, 02:18 PM

This is timely for me...I posted on my local support group's website a month ago after attending the San Antonio Breast Cancer Symposium. I wanted the younger surviviors and first-timers to know that they have to do whatever is necessary to get the best care and results... and it included my diatribe about dismissive doctors.

"But the only way to fight this disease is to be a FULL participant in your care. Do your homework and always increase your knowledge about your cancer. Take new lists of questions to your Onc every time you see them. Become a sharp and compelling patient. It really does make a difference. You are your own best advocate. If your doc is not willing to answer your questions and help you become more knowledgeable, it might be time to consider a new Onc. If they are dismissive of your concerns, interest and contributions, and seem to have a disdainful attitude when you want to talk about vague new symptoms or new developments, etc... (e.g. treat you like you have no clue and won't possibly understand)- then it might be time to find a new Onc. I have a joke with my Onc that I am his Jr. Doctor, and he has really embraced me bringing in new info, questions, and all of my concerns."

Is there another onc in that office that you can switch to? I know it is convenient for you, but it does not sound like he has your best interest at heart... Let us know what you decide to do!

CLTann · 01-15-2008, 04:26 PM

On another thread on D3 level, I already expounded on the attitude of doctors. Of course, there are some doctors who are compassionate and kind, but they are minorities. Some of the responders to your message disagreed with me from their own perspectives. Unfortunately, there are too many doctors like yours. They are real problems for us patients.

It is too easy to say, fire the doctor. Many of them are associated with others and your chance of getting a good one is quite low. In a big city, where there are more choices, the switch is often difficult. Big city doctors are notoriously cold. Small city doctors could be more caring but the selection is limited. You are almost finished if you become a persona non grata in a small community. I sincerely wish you are successful in finding a new doctor. I agree with others that you have no chance to re-educate your present doctor on his manners. By all means, locate a doctor from a university medical school, they are not as commercialized, more objective and quite up to date on new technology.

tousled1 · 01-15-2008, 06:32 PM

Susan,

About a year ago I had the same experience and my oncologist sent me for a brain MRI (clean) and to a neurologist. I got an EEG done and then had the EEG hooked up for three days 24 hours a day. I had to keep a log and of course if I had an "episode" note at what time. Well, I did everything and of course had no "episode" while hooked up. Final conclusion was that everything was ok. Could be from stress. But if I were you I'd definitely have it checked out.