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When to find new oncologist

myAZmountain
Posts: 224
Joined: Apr 2018

Looking for advice --Stage 4 colon cancer with lung mets here--had all surgery and biopsies done at a fantastic hospital in Virgina, was there visiting my daughter and my appendix ruptred leading to discovery of tumor in cecum. Surgery was awesome, all moargins clean, no nodes, one mets to omentum that was removed. 2 mets to Right lower lobe by PET, Hi Resoluiton CT was read for some small tumors in both lungs. Returned to my smal town in AZ, been dong chemo since May--hit hard. I have only seen my oncologist three times, he never assesses side effects, BP has been high with Avastin and he ignores it spends ost of visit discussing his personal life and ow much money he is paying to send a kid to boarding school. NO physical exam ever, no teatment plan other than chemo chemo chemo. So finished 6th cycle FolFox/Avastin and will be scanned for progress. Seriously thinking of trying to change to a larger Cancer center 3 hrs away. Has anyone else had a totally detached Doctor ad did you find an alternative? Thanks!

Trubrit's picture
Trubrit
Posts: 4717
Joined: Jan 2013

I travelled almost three hours to my Oncologist in the big city (I live in rural Nevada), for treatments, and it was doable, even with the side effects. Note, my husband did the driving, I think that would have been too much for me. 

You are paying your Oncologist to treat you, not for you to be his sounding board.  

I remember well, my first chemo infusion (don't we all). I had a notebook filled with quesitons. My Oncologist popped his head around the door and gave me a quick 'Hi'. I crooked my finger at him, and told him 'I have quiestions'. He came in. I asked my questions, he gave his answers. I was happy. The next infusion, he looks into the room, and I wave my notebook at him, and give him a big smile. After than, he just came into the room and sat down, ready for my questions. That is what a good Oncologist does.  The moral to that story is, let your Oncologsit know what you expect, and if he does not fulfill those expectiations, find yourself a new one who does. 

Having Cancer is bad enough. Being taken care of by somesome who does his/her job properbly, well, it makes it just a bit easier. 

Go check out that Cancer Center.  I wish you all the best.  

Tru

 

myAZmountain
Posts: 224
Joined: Apr 2018

I think it is time--I will see what scan says, God willing tumors will be gone,--but if not I would like to consider other options than chemo like Proton therapy, immunotherapy etc. Did you have the 48 hr 5FU pump to deal with? 

 

Trubrit's picture
Trubrit
Posts: 4717
Joined: Jan 2013

I did nine treatments of FOLFOX, and yes, took my pump home with me for my 48 hour hook up.  Luckily, we have a medical company here, who came to my home to unhook me, so I didn't have to drive back up to the big city. 

When I did radiation, I had to live in the city, where I had a friend who opened her home to me. Bless her! I was hooked up to the pump for six weeks, 24/7.  

Tru

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

My local oncologist has treated me for Neo-Adjuvant and Adjuvant but I have an oncologist at Dana Farber for second opinions. I may be using him for surveillance as well - I haven't completely decided yet. Dana Farber is an hour away with no traffic. Two or more hours with traffic. But my mother lives in the Boston area and it gives me more opportunities to visit. If I were dealing with what you were dealing with, then I'd want someone at the top of their game as Stage 4 is serious, serious stuff and any medical professional should treat it seriously.

That said, six hours of driving every two to three weeks is a lot of driving.

SandiaBuddy's picture
SandiaBuddy
Posts: 812
Joined: Apr 2017

I changed oncologists.  This is your life that you are dealing with and you should feel confident that you are getting the best care possible.  But do understand that oncologists primarily prescribe chemo--and that they seem to have a strategy of downplaying or ignoring side effects.  I found the best information about side effects and ways to deal with them on this forum.

Annabelle41415's picture
Annabelle41415
Posts: 6078
Joined: Feb 2009

It's probably past time to get a new doctor.  Didn't like my first surgeon's approach so got a second opinion and found a great surgeon so it's a good time to get another opinion.  No doctor should be talking about expenses and not doing a physical exam or talking about future plans.  Wishing you well and hope you find a fantastic doctor.

Kim

Kazenmax's picture
Kazenmax
Posts: 310
Joined: Feb 2016

Hi. I have an oncologist who has a terrible bedside manner. Not very friendly. Not forthcoming with information unless I know enough to ask. He's supposedly the best in my area. I travel an hour one way to see him. I see him for 5 minutes before each infusion. The last time I asked if there was any way to reduce the strength of my chemo and he simply said no. 

I have had a recurrance in my left lung. Removed two nodules positive for rectal cancer. Removed 15 or so lymph nodes no cancer and clean margins on the nodules. Surgeon said I was cancer free.

I'm currently on avastin/leucovorin/5fu combo. I get my infusion and then wear the 5fu pump for 46 hours. I am scheduled for 12 treatments every two weeks. The avastin block blood supply to tumors. This combination is very rough. side effects are  extreme fatigue, nausea, rash, etc. I have had 3 treatments and I'm considering stopping. 

I would like to see a new oncologist but I don't know... Let's face it. Oncologists treat blood disorders on a cellular basis. I think this guy got into this field because he likes a clinical approach to defeating cancer. Then again, they must have to deal with losing patients all the time. I know I could not do it.

Do I want to go to another doctor to hear what I want to hear or do I want a doctor who while he's not the friendliest person, is very good at what he does. 

Not sure I helped you with this rambling. I don't know what I'm going to do either.

k

myAZmountain
Posts: 224
Joined: Apr 2018

Not sure what to do --I get my first scan post chem (6 rounds) next week so am going to decide best plan after the results. Been reading Radical Remission and it really makes you reassess your plan! 

Twinzma
Posts: 191
Joined: Jan 2018

Then it is time. I put up with a lot of nonsense from some doctors because of their reputaion in thier field. I wait hours and HOURS for my GI but he is in the top 10 of the nation. I would never EVER put up with a dismissive or non proactive doctor. I don't have cancer, my husband is the one and I think that he is a fool to only see his doctor. We are getting another oppinion. She has been seeing him every two weeks, examining him, calling him at home to check on him. I love her for that, but she doesn't have the experience in years nor the average survival outcome that I think my husband needs and desreves. I do plan though to talk to her about this. She is young and I think very encouragble. I believe that if we were to seek treatment at a larger institute out of state that she would work together with that center. I feel as though she wouldn't take it as an insult for us going to say Memorial Slon and she would welcome new ideas and new approches. Sounds to me though that your doctor could care less. Sounds like he would be insulted with a God like complex. Time to move on my friend you don't have a hang nail, you have cancer you Deserve better treatment! Hugs and best wishes your way! 

myAZmountain
Posts: 224
Joined: Apr 2018

I am definitely going to seek out a new treatment center, there is a Mayo clinic abut 3 hrs drive. I am also going on a chemobreak before my body breaks down completely. Appreciate your kind words!

plsletitrain
Posts: 253
Joined: Jul 2017

What's of paramount important is the doctor who gives us peace of mind.  One whom we are comfortable with.  Or at least to me, that is.  I had a satisfactory onco in my area but I went with the larger hospital and although the fee is much larger, I never regret it.  He also even encouraged me to look for a 3rd, 4th, 5th, or for nth opinions as long as I am satisfied with my team. I think I have a good onco.  He's knowledgeable with science yet he also gives me words of encouragement and hope.  I love him.  I include him in my prayers.

danker's picture
danker
Posts: 1173
Joined: Apr 2012

The oncologist the hospital assigned to me was a real jerk.  When I realized I was paying for poor service, I fied him!  My new onc. was a true gem.  I had her for 7 yearsbut she moved out of state on me.  I currently don't have one.  Best of luck to you!!!

abita's picture
abita
Posts: 569
Joined: Dec 2017

My oncologist was so wonderful to me. Even hugged me when told me cancer free, with two spots that are probably scars, but let's check them out. 6 days later, when he tells me they are most likely cancer, he was kind of cold and gruff, and made the news so much worse than it might be (I will know after the pet scan). Anyway, I have loved him this whole time as my oncologist, but that one meeting had me wondering if I should get a second opinion, and maybe new doctor now

Trubrit's picture
Trubrit
Posts: 4717
Joined: Jan 2013

It must have been awful for him - though not as awful as it was for you - to know that he had given you false hope.  His hug, tells me that he really believed the spots were just scars. His coldness may have been embarrasment, and maybe hurt. I know as professinals, they need to distance themselves, but they are only human, after all. And sadly, they are not perfect. It is not a perfect science. 

Give yourself a little time before making a decision to go somewhere else. 

Just my thoughts.  

Tru

abita's picture
abita
Posts: 569
Joined: Dec 2017

Thanks. That does all make sense. I had decided to wait until after I get my scan back and see. It is amazing how hard one can pray that these are harmless nodules of some sort, even when the oncologist made that seem like a less than .1 perscent chance it is something else.

myAZmountain
Posts: 224
Joined: Apr 2018

Praying that  your scan is clean! I have made an appointment for second opinion and feel good aobut it. The last straw for me was the bumbling of scheduing my Ct scans, I had to make dozens of calls and got the unbelievable run around for just a CT scan ordered on July 26th! Finally got it scheduled but lordy what a complete dropping of the ball. And I am sure my oncologist is going to infer it was my fault.  Hoping mightily yours turns out well!

 

 

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