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Seeking opinions about my dad's oncologist, please help

darthhen
Posts: 8
Joined: Oct 2013

Hello,

New member to this forum, second post. I'm am seeking advice for my dad. Hope somebody can provide her/his insight.

Quick background: In September'12, my dad went to ER for massive fluid build up in his stomach. After he was released from the hospital, he refused to go back for any followups. When  December'12 came around, he had to visit the ER again because the problem came back. We found out that my dad got colon cancer 3B. He went through surgery to remove 4 lymph nodes in his stomach area and also had colon resectioning. In February of this year, he started chemo treatment. His chemo treatment finished in August.

My question is: Is it a good idea to change oncologist at this point?

Here are the reasons why I am seeking help:

  1. When my dad finished his last chemo treatment in August'13, I asked the oncologist what are the next steps. He told me that my dad should do a colonoscopy in October'13 and CT scan in December'13. In that same visit, I asked the oncologist what is my dad's CEA? He told me that his the last CEA they did was back in May'13, which was 4.99. And since May'13 they didn't do one. I was very surprised that they didn't measure his CEA after his treatment. The oncologist told me that they don't have any other CEA data on my dad. The oncologist told me that his CEA should be low since he finished his chemo. Regardless, I requested my dad's CEA to be measured again. The test came back with 4.88. So I asked him what should we do because the CEA count is still high. He finally said that my dad should do the colonscopy and CT scan sooner. After all the tests are done, then we should meet again to discuss my dad's condition.
  2. For the colonscopy, I took my dad to the same gastrologist that attended him in September'12 and December'12. While I was there, I asked him if they had done any CEA assessment when my dad was at the hospital in September'12 and December'12. Turns out to be yes! September'12's CEA was 2.7. And 0.7 in January'13, after the surgery. The colonscopy came back clean.
  3. For the CT scan, the oncologist said that somebody in his assistant will call me to arrange an appointment. After a couple of weeks I didn't get a phone call. I finally called them back and they said that somebody will call me at end of September'13. Again nobody called. My dad had to go for a port flush appointment on October 1. During that visit, the lady told him that he needs to go for a CT scan the next day! Talk about poor service and planning. My dad went for the CT scan as planned.
  4. We had an appointment with the oncologist on Friday to discuss my dad's results. I asked him what he thought of the colonscopy results. Turns out he hasn't even read them yet! He didn't even know the gastrologist's name. I was very angry. We told the oncologist that my dad has been coughing a lot lately and there's pain in his chest. So I asked him could it be lung cancer? He replied that small percentage that colon cancer can spread to the lungs. I asked him how many percent is low, he said single digits. The oncologist is now referring us to a lung specialist for my dad.

At this point, I am very, very unhappy at the quality of service and attention my dad is getting from the oncologist. First of all, I believe the he should have checked with the hospital for any records of CEA tests. Secondly, he should've read the colonscopy report. And possibly a third reason, seems like it is common for colon cancer to spread to lung. I don't think he knows what he's talking about

I feel like I should be looking for a new oncologist and cut my loses with this one.

Thanks for taking the time to read my post.

-darthhen

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

They are sll valid concerns. I have changed oncologist twice. The bottom line is if your father is not comfortable with his onc he should change him.

jen2012
Posts: 1255
Joined: Aug 2012

How does your dad feel about the doc? If hes open to the change its probably a good idea. If he likes the onc then maybe a second opinion is in order.

UncleBuddy
Posts: 714
Joined: Aug 2013

When in doubt, follow your gut feeling. This is dad's life, so I would do whatever I have to do in order to get him the help he needs. There is no reason why you have to keep calling the doctor. They should have all this information and be on top of his care. Good luck.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Sounds like your  onc has too many patients  or else is very disorganized. I don't know why he would be sending him to a lung specialist. My understanding is it spreads to liver, or lungs it is still colon cancer and you use colon cancer.  I pray for you and your family find the right answers.  Jeff

darthhen
Posts: 8
Joined: Oct 2013

Hello,

Thanks for the responses. My dad says he doesn't really care. But I know that he doesn't want to the facts/truth about his health. That's why he never wanted to go back for a follow up when he left the hospital in September'12. My mom agrees with me that our current oncologist is no good.

I agree with the gut feel approach.

Do you guys have any recommendation on how to find a good oncologist?

janderson1964, you mentioned you changed your oncologist twice. Would you mind sharing some tips? Are there particular quesitons I should be asking?

Thanks everybody.

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

The first time I changed I asked my surgeon who I respect for a recommendation. I currently don't have an oncologist after the second one. I am seeing my surgeon for follow up care.

UncleBuddy
Posts: 714
Joined: Aug 2013

There are so many people on here who have been fighting CRC, maybe some of them with a lot of success can tell you some good groups/oncologists to go to. I have heard so many positive things about Sloan Kettering in NYC. I wish we lived closer, but it would be a very long trip for my brother. If it has to come to that down the road, I will make it happen if need be. Right now our group has been wonderful on many levels, but we will see how things go. I just want the best for my brother. Maybe if you tell everyone what area of the country you are located they can give you some help? Or PM some people on here and ask?

Happyhar
Posts: 49
Joined: Apr 2010

I can feel your frustration. I had the same experience with my onc in Florida. CEA had started to creep up and he either was not informed by staff or chose to ignore it. I understand that CEA levels are not always a consistant and reliable marker, but should be investigated until proven not to be reliable for a particular patient. I requested bloodwork reports as we relocate for the summer and discovered rising CEA levels myself. I contacted a previous onc who had also relocated and whom I respected greatly and had kept contact. He advised imediate CT and PT scans which indicated a lung nodule which I had removed rather uneventfuly. A long story, but emphasises how much the patient, if possible, and/or their families must be proactive in their own care. It often pays lifesaving dividends, often shown on here. God Bless you and yours in this dificult time.

darthhen
Posts: 8
Joined: Oct 2013

Hello Happyhar, what is a PT scan? I'm a bit surprised at the care for attention by our current oncologist. But it sounds like you had the same poor experience. I guess this is a situation where one really needs to pay attention. My grandfather (my dad's dad) die of lung cancer. So my dad sees the possibility of having lung cancer himself as a high possibility.

Hello janderson1964, thanks for the quick response.

My parents in the Hayward, CA...which is in San Francisco Bay Area. Hayward is in the east part of the bay though. If anybody that's reading this can recommend a good oncologist, please let me know.

Thanks to everybody's response on this. I am a lot more confident that we should be switching oncologist. I had some doubts prior making this post but I am 100% sure now.

Annabelle41415's picture
Annabelle41415
Posts: 4408
Joined: Feb 2009

Getting a second opinion is always a good idea, especially if you or your loved one has concerns.  Please don't put a lot of stock in the CEA number as a primary to having cancer or not.  There are a lot of doctors that don't use the CEA because it can be very unreliable and is a bad indicator in determing whether you have cancer.  Not everyone's CEA ever go up and continues to be in the normal range even though they have colon cancer.  Having the doctor's office not call you back would make me furious.  Just that fact alone would make me question my doctor's practice.  You never said whether the scan came out normal or not when you went to see the doctor.  If the scan came out normal, then sending him to a specialist for the coughing would sound like a logical step to find out why he is still coughing.  Just wanted to also welcome you to the board and please let us know what you find out.

Kim

 

darthhen
Posts: 8
Joined: Oct 2013

Annabelle41415,

The oncologist said the CT scan shows enlarged lymph nodes. So that's why he is referring my dad to a lung specialist. Since we also told him about my dad's cough, that's makes a stronger case for referring us to a lung specialist. The oncologist office is supposed to call us on Monday but I'm not counting on it.

Thanks.

LivinginNH's picture
LivinginNH
Posts: 1343
Joined: Apr 2010

 

He's referring him to a lung specialist - how odd!  Like Jeff said, since it's mostly likely a colon cancer met, he would normally stay with his oncologist for continued care and treatment.  As the others have all said, you need a better oncologist.

Cyn

danker
Posts: 772
Joined: Apr 2012

ll just state that my first oncologist was a jerk. So I fired him. I offered three different oncs at my surgeons hospital and she referred me  to my choice.  Almost 4 years later I am still with her and happy as a clam. Seek a second opinion with a different oncologist see what happens.  Good Luck to you !!

Happyhar
Posts: 49
Joined: Apr 2010

A PT scan is also called a PET scan. It is different than a CT scan and seems to "light up" tumors that may be cancer. Usually given if Ct scan indicates "something". At leaST THIS IS WHAT i UNDERDTAND.

Phil64's picture
Phil64
Posts: 519
Joined: Apr 2012

darthhen,

I went for a second oppinion and ended up switching oncologists.  I am going to University of Michigan Health System. 

CEA. My current oncologist has tracked my CEA every time I came in (every two weeks).  In my case the CEA had a strong correlation with cancer (e.g. it was low after surgery and went high when tumors were growing).  So he watches it close.  He has also insisted that I come into UMHS for CEA tests (it's an hour drive) as he believes that CEA tests at different places can contribute to different results.  He wants a consistent test each time.

I agree with others - gut feel is important when dealing with the doctor.  Ultimately you need to trust them and that is a matter of gut feel!

On another related note:  CT Scans are not always reliable.  I have learned that it is best to have multiple scans as sometimes a growth may show up on an MRI but not on CT or PET scans.  In my case CT and PET scans showed a healthy liver while the MRI finally revealed tumors in the liver. 

Note: I've been through a colon resection, lung resection, liver resection and two different treatments of chemo.  I was stage IV from the start and I'm finally faced with chance for a remission.  My latest CEA has been under 1 while finishing up chemo.  I'm scheduled for my first scans (CT, MRI, and PET) next Monday.  So I'm hoping they will confirm no sign of cancer and then we'll monitor CEA monthly.

Good luck and God be with you and your father. 

He is lucky to have a concerned and wise daughter!

Phil

Blog: http://PScamihorn.me

 

darthhen
Posts: 8
Joined: Oct 2013

Hello Everybody,

Just a quick update. I scheduled an appointment with another oncologist this Thursday at 9:00AM. The lady I spoke with on the phone that booked the appointment for me asked for my dad's current oncologist so they can get my dad's records. Hopefully, a warm and fuzzy feeling with the new oncologist.

Happyhar, thanks for the information. I didn't know about this.

Phil64, your story is pretty crazy!! I would've probably given up. Oh, btw, I'm a guy. Smile

darthhen
Posts: 8
Joined: Oct 2013

Hello Everybody,

Another update....

Took my dad to the new oncologist yesterday. My overall experience with him is positive! He took a lot of time to explain and re-explain my dad's test results. And also what options he has. He didn't refer us to a lung specialist. But he said the my dad should to a bronchoscopy so they can take some samples from the enlarged lymph nodes. Since the enlarged lymph nodes are near the center of his chest area, bronchoscopy is the only method. He also explained what would happen if my dad doesn't want to do the bronchoscopy now.

My dad is going to think about what he wants to do next.

Thanks for reading.

 

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