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Should I change to another Oncologist

mc1717's picture
mc1717
Posts: 21
Joined: Sep 2008

Is it normal to hate your doctor? Perhaps I am just stressed and the doc just happened to be the one that I vented on.

Long story short: I just completed 3 weeks of chemo via an infusion pump going 24hrs a day for seven days a week. When I first started the chemo the Onc said i would have the pump for 5 weeks. Since I was feeling good (no bad side effects yet) I figured the last 2 weeks would be a breeze. Today I was talking to the Onc and she asked how things are going. During the conversation I said the last radiation would be on 10/29/08. She said that means chemo would be done on 11/1/08. I asked why she is adding another week to the chemo plan, she said she wasn't. She said she didn't know what the plan for radiation was. I said "you and the radiation Doc talked about my case right? We went back and forth on this to the point I was getting mad. I finally said, "whatever, are we done, I want to leave". SHE THEN GOT AN ATTITUDE WITH ME!!!! because I kept arguing that she said it would be done on 9/25/08. I then said, do you want me to play back our conversation? I have it recorded. She then got very mad that I recorded it. She asked "is this being recorded today?" I said no, but I wish I was because I would like to use it when I change doctors. This made her made again! She says she does not want her conversations recorded. I said you didn't stop me back on 9/22.

Now I do not want to see her again. How much trouble is it to change Onc in the middle of treatments. Will it cause a break in treatments while new Onc reviews my case? Should I just stick it out and find a new one later?

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I have no clue as to how your Dr is about handling things but if I was guessing you are stressed to the max and barking at anyone that has anything to do with your illness. I took a lot of my frustration out on my wife (only verbally) which is bad enough because I was at the point that I had no control at all of anything. It was a helpless feeling to not be able to do anything about something that has such a large hold on you. I actually felt as if every time I turned around I was getting sucker punched from another angle this disease took me. My way of taking back control and sparing everyone that was trying to help me was I went to see my family Dr and had him prescribe me a mild dosage of Prozac (10 mg) a day. This allowed me to not dwell on my illness and actually have good days where I hardly think about it at all. All Oncologists are there to guide you through this path and if the path changes to make sure that they change the course of action. Your chemo regimen is the same as most pre op chemo/radiation treatment 5 weeks of 24/7 5fu drip and 25 or so radiation treatments 5 days a week...I know you want to get rid of the fanny pack but you have to remember that it is there to keep you alive, and your oncologist is there for the same reason. Get use to the idea of chemo treatments for a while. Im sure there will be post op chemo treatments if you opt for them and surely you will. I just had to settle back and decide that I was going to use my aggression to fight the disease and not those who were trying to save me. Its ok to want a second opinion and it is completely fine to want to change Drs. But, be honest with yourself and ask yourself ,why am I really wanting to change oncologists"? Then when you answer that question then make your decision. I apologized to my wife, Dr, gastroenterologist, and God because I blamed them all, only to find out they were all my best friends........you can be miserable like I was or you can try the Prozac and give it a couple of weeks to work and allow the fight in you as I had to beat the disease. Then all will be well.......Good Luck and God Bless

krystiesq's picture
krystiesq
Posts: 242
Joined: Jun 2008

If your doctor does not give you hope, find a new one. If you don't like your doctor find a new one. This is your health they are dealing with and if your doctor isn't paying attention to it, fire them and move on. You could consider consulting with another doc while you continue with this one. Get copies of your chart, most recent scans and shop for a new doc. I'm doing just this with my mom, mostly because something doesn't fit with the treatment center she visits.

She is mid treatment too and I don't want to hinder her health by discontinuing, so we have decided to keep seeing her normal oncologist while going to a second opinion at another which practices at a major cancer center. We made this decision because it seems like my mom is not treated as a human being; she is just another number, another person with colon cancer and another statistic. Follow your instinct and don't feel guilty or look back.

pamness
Posts: 513
Joined: Nov 2007

I happen to live in Boston so major cancer centers are on most street corners (not really). However, when I first started treatment for stage 3A colon cancer, I was asked - would you rather be treated/operated on by the person who does 20 of these a year or, literally 100 or more.

To me the answer was obvious, I wanted an expert.

If you are at a major center and can't talk to your doctor = you do need to change. Quietly look to find another oncologist you is expert in the field. There is only a two day difference in the plan, can you ask your radiation oncologist about it,. Ideally, you would have team that works together. Since radiation and 5FU are done at basically the same time - maybe you could talk to someone about the next phase.

Remember, this is a very hard time - she was only wrong by a few days - the biggest issue seems to be that she doesn't talk to radiation and you and she are not too simpatico. I wouldn't change until 5FU and radiation are done.

Pam

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

First, you need a big old hug!!!

What you are going through with your health and your treatments, is stressful enough on it's own. Then when you think of all the various appts. we have to go through, the different doctors/radiologists/oncologist/GP/nurses, and the list goes on and on... it's enough to confuse anyone... and from what I understand, anger and frustration is a normal reaction.

I have to agree with both friends who posted above me. First, you want to take a breath or ten and figure out what is really bothering you. Is it the oncologist, is it the amount of cycles of treatment when you thought it would be less, or is it just the plain, darn frustration of being told one thing, adjusting to that and then you find the plan has changed? It could be a combination of all things... then again, it could be that you and your oncologist just don't get along. As in life, there are people we click with right off the bat and there are people that, for no reason known to us, we just plain don't like.

If that is the case and you truly don't like or feel comfortable with your oncologist, then definitely get yourself another one. But remember, even if the next one is someone you really like, there's a good chance the treatments aren't going to change and if anything, they will throw a few surprises at you with extra ones.

In my picture, it's a picture of me and my oncologist, Sharlene. I can not say enough words about how wonderful she is... I love her to pieces. But there have been a few times when I've thought something like, "Oh good, only one more chemo cycle and then the pump can come off for good!"... only to be told by Sharlene, "You seem to be handling the chemo really well, so I'm going to give you an extra two cycles." Waaaaaaaah!! Why??? Is it not working??? You told me 8 cycles, now it's 10?? Is it something I did?? Is there something going on I should know about?? Well, I no sooner got through the 10 and she said, "Your blood work is great. And you have energy so your system is definitely handling it alright... except for the Oxipilatin. I'm going to take you off the Oxi but give you another 2 cycles of the 5FU". Waaaaaaah!! More?? I then freaked out and asked her, "If you take me off the Oxi, is that putting me in any more danger?" and she assured me that it wasn't. The 5FU does 3/4 of the work, so we are doing these next 2 cycles just to be safe and because I seem to be tolerating them.

So, even with an oncologist that you love to pieces, things can change from visit to visit. When they say at the beginning you are going to get 8 cycles of such and such, you can't hold them to that. They are analying your blood work, scans and your general health and if they feel more will benefit you, then they will order it... if in fact, that's what you need.

It sounds like maybe this oncologist of yours could use some better people skills in communicating to you, rather than being defensive... then again, you did admit you were getting angry, so your tone of voice may have put her/him on the defensive. I'm not sure why he/she should be upset that you were recording your sessions. Up here, they have it written in the brochures and tell you verbally that they highly encourage patients to come with a family member or friend who can take notes, or to record the session since you probably won't absorb all the information that is given to you.

Sooo, take a few deep breaths, see if you can figure out what is making you so angry and then try and deal with that. I'm sure you aren't the first patient that has gotten angry at her doctor, but you certainly don't want to go through your whole treatment angry. But if you really don't feel comfortable with your oncologist, then it's probably best to change Dr.'s as soon as possible so you can get on with your treatment in peace.

Hugggggs,

Cheryl

ac
Posts: 84
Joined: Aug 2008

Let me share my personal experience so that it can help you make you make a better decision or judgment call.

When I first saw my medical oncologist, he gave me a prescription for 6 weeks of Xeloda. On a subsequent visit with my radiologist, I was told that I needed 5 weeks of radiation. After I mentioned this discrepancy to my medical oncologist, he told me to take just 5 weeks of chemotherapy. I believe he told me 6 weeks initially before the radiation treatment schedule was finalized. I trust my doctors so I'm still sticking with them.

I suppose it could possibly be stress induced as I now find myself rather impatient and irritated at times too. But I find it strange that she would admit to not knowing what the radiation plan was and not immediately do something about it ie call the radiologist to confirm or something. I remember a couple of instances where my radiologist picked up the phone and called my medical oncologist while I was in his office.

How about mentioning this to your radiologist to see if his opinion matches that of your medical oncologist or if this is normal practice?

Good luck!

Andrew

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I had such a hard time with my chemo after initial diagnosis and surgery that when I started to show signs of recurrence I said flat out, no chemo. After my abdomen started filling up with fluid requiring weekly drainage, we wound up having to do surgery and chemo again. I know my onc told me initially it would be a "couple" of rounds, but I also knew that the standard was 12 and he was just trying to ease me into it. He didn't want to scare me away by saying we were going in for 12, but we both knew that is what it was going to be, assuming I was tolerating it ok. I also know that the initial treatments are tough because you are adjusting to a new normal. Once you kind of get into the groove of feeling like crap then feeling less like crap, it's easier to handle; knowing that it's killing the cancer helps too! I also know that I like my onc and that makes all the difference in the world. One of the other docs in the office took care of me one time when i needed to be drained of fluid and i disliked him so much i told my onc i didn't want to be seen by him again and i haven't. When i had an appt and my onc wasn't in, i was seen by the other one of the three. I don't really care what the reason is that i didn't like him, i just knew i wasn't going to be seen by him in the future! Good luck with your treatments and let us know how things go!
Mary

ac
Posts: 84
Joined: Aug 2008

Just want to share that I found out today that my radiologist decided to add 3 extra radiation treatments for me. These will be more direct at the tumor with smaller margins. So I guess the extra week's prescription of Xeloda did come in handy after all.

Perhaps your treatment schedule could have been modified after it was initially planned?

Take care.

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

There have been a couple of times I have thought about changing oncs.
The first time was when a PET Scan came back showing what the radiologist was saying
was an increased growth in a liver tumor rather than shrinkng it as we had hoped with
the FOLFOX. At that point, I broke down and said I wanted a second opinon. I could not
believe I had been through four treatments of powerful chemicals only to have this happen.
I am also the only Stage 2 patient to return in three years with a large liver tumor; and
she had never seen a PET scan like my results and I seem to have more side effects than
most of her other colon ca patients, etc. Her experience does seem limited. being on this
website has helped me learn that others have all kinds of side effects as well.
She suggested going to a major cancer center rather than getting a second opinion in the
city I live in because they see hundreds of cases as opposed to local docs who see less.
I started the process to go to a major center in Georgetown, outside D.C. But then also
got another PET Scan at the local University and this PET as observed by the surgeon was
better and he had a different twist saying it was necrosis not further growth. I put the
out of town trip on hold; had surgery and returned to the same onc. I had read on the
National Institute of Health site that the routine procedure for this situation was FOLFOX or some
chemo before surgery and afterwards. So my onc was following standard practice. I have
gotten upset again when she says one thing; the surgeon says something else and the pathologist says something else....mostly over how much necrosis there was and over percentages of recurrence rates. Well, I decided no matter how much necrosis and how
much not, we are still following standard procedure and statistics mostly need to be
taken with a grain of salt; we are all different. Then this week I got upset when I
learned that my treatment and conference with the onc had been delayed 1.5 hours because
she is double booking. A nurse gave me a complaint sheet to fill out but I don't
want to put my name on it and cause additional angst. But is double booking patients
a kosher thing to do....I don't know....is she doing it just to make her money or because
there is a shortage of oncs in this area?.......so I have not returned the complaint form yet.
I guess we all have our ups and downs with our docs but I think until I believe that standard
procedure is not being followed, i will stick with this one, it is so hard to look for a new
one and then you never know if they are better or worse.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

dixchi, it pains my heart to see you going back and forth between do I stay or do I go; much like the seesaw I went through when I was deciding if I should leave my husband... but that's a story for another time! Anyhow, I hate to read between the lines and see you "settling". It sounds to me like you really DO want to find another onc, just need a stronger push towards that. I LOVE my onc. I pray for him and i genuinely want to know that he is doing well. Of course, my reasons are totally selfish! If he is doing well, he can put his best into my treatment! If you don't LOVE your onc, by all means look for another one! Double booking? Is she running an airline? Bad enough when appts run behind due to emergencies our fellow survivors run into! But double booking appointments? That's definitely a very strong sign she's overextending herself with patient load! My onc's office (I actually initially referred to it as our office and had to back it out and retype!) just added a new onc to the practice; their load was getting to be too high to maintain as quick a response time as they like! I remember early on my onc getting upset because I had to wait 30 minutes even though i had actually arrived for my appt a bit late! He understands the importance of time and i appreciate that! Good luck, and keep up the fight!
Mary

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hehehe... I love the way you write and then throw in a "but that's a story for another time" teaser in. I would love to hear ALL your stories... whether they are about cancer or something totally unrelated. Your life seems to be full of experiences and... well, isn't that what life is all about?? Keep up the wonderful writing... I love it!

Meanwhile, I know this topic is about whether one should change oncs or not, do others have bad experiences with theirs? Is this more common than not? I also wonder the differences between our two countries and the way things are done. For sure, it appears both countries follow the same treatment routines, processes, types of meds, etc.... but the patient care seems to be quite different.

In this particular topic, I actually feel guilty. It's sort of the same feeling that I would imagine "Survivor Guilt" would be like. I absolutely adore my oncologist. She is one heck of a busy lady (aren't they all? There's just so many people getting this disease but only so many doctors to go around), yet when she's with me, she treats me as if I were her only patient, along with the feeling we are friends, that we have a "connection"... at the same time, she always has prepared information before I get there.

A good example of this was this past Friday. I had an appt. with her to go over the results of the PET scan, and then discuss the chemo plan, how long it will be, what kind of chemo, etc. That's what I thought the appt. would be. Well, sure enough, we went over the PET scan results which were wonderful! Totally clear except for the stuff in the lungs which we already knew about. So, onto the discussion about chemo. She took my hands in hers and said, "Cheryl, your case can be quite complicated and is definitely challenging all of us. If you don't mind, I'd like to get a third opinion. I would like your permission to send your PET and CAT scans to a Radiologist who works in a different hospital and have him go over them and see if he thinks he can perform an ablation on your lung tumours. If he can, then we might not need the chemo, and even though I am a chemotherapist, if I can keep you off chemo, I will." Now, how often do you hear oncs saying "they" would like to get a second or third or fourth opinion?? We had a great talk and when I left that appt. I was walking on Cloud 9. Then I started to think about it... I have definitely had my "down" times and more than a couple of times, I have been terrified of the possibilities... but no matter how down or scared I might be, after talking to her, I walk away thinking, "Everything's going to be alright!" :)

To me, that is the perfect oncologist. One who knows her stuff, knows all the medical procedures and treatment processes... then if something pops up that she is mystified about, she is not shy to say, "Let's bring someone else into this and see what they have to say.

I think I mentioned in another topic that my friends are having a "Celebration of Life and Friendship" party for me on Sunday. This is to celebrate that life is GOOD and friendships are the most precious gifts anyone can have... and the combination of the two are very powerful to get us through these challenges in life. I told Sharlene on Friday that this party is being planned and will be happening on Sunday and that I would LOVE it if she could come, although I totally understand if that would make it awkward for her because of the doctor/patient relationship. But I have raved about her to my family and friends and I would love to be able to introduce her to them. She told me to send her an email and she would check her calendar. So, I sent her one of the official invitations (eVites) which explains what the party is for, why we are having it, and then all the information of where, when, time, etc. She RSVP'd and said that she would LOVE to come and is touched that I would invite her. She said she is "on call" that weekend, but she will definitely be able to come and spend some time with me and my friends.

Now is it just my imagination, or is she not an oncologist who goes over and above the call of duty for compassion for her patients? She could have had any excuse not to come to the party and it would have been totally understandable. But the fact she is coming and actually wants to come, it make me love her all the more!

So, I guess you can kind of understand when I hear of those of you who don't feel comfortable with your oncs, or it's just a feeling that you are not on the same page as they are, then I feel guilty because I have it so good. She's in the picture with me and even in the picture she looks so approachable.

Hey, we all are going to be with out oncologist for some years... even once we are NED, they still are going to be checking up on us, and still will be in our lives. So I think it's really important that you DO like your oncologist, that you can respect them and feel totally comfortable that they know their business and know they are going to be doing the best they can for you.

So, I wish everyone luck... and please keep us posted on what you decide to do.

Hugggggs,

Cheryl

WifeToW
Posts: 2
Joined: Nov 2008

Hello - i am new here. Hubby just finished 12 rounds of folfox on Thrusday (YIPPEEEE).

To address your question.. we changed Oncologists after 8 rounds of chemo. This doctor did not listen to what my husband had to say. The last time we saw her... she asked how he was feeling. He said that his fatique was off the charts and he could not do anything but lay around and sleep.
Her reply? "It is all in your head"
We politely left and found a new Dr. Though it did delay his chemo #9 for one additional week - it was worth the switch!

If you are uncomfortable with your doctor, please go with your instincts.

WifetoW

oops - forgot to say that it was very easy to switch! They had all paperwork transferred and just continued on with the treatment (which the new Dr. agreed was the best course for him)

doris2657
Posts: 39
Joined: Mar 2008

Hi.

I guess I'm one of the lucky ones the oncologist I go too are a big complex and they all talk to each other.I was in the Hospital a week ago with Gallstones when I told my onc since he was away when I was in the hospital,he told me before we do anything else I need to talk to all the DR you saw in the Hospital and he did,so I know he keeps up with everything that goes on.He is kind, caring and compassionate,but there are still times I get mad at him because he is there,Hope all works out for you.

God bless you

Doris

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