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Second opinion or not ?

worriedson714's picture
worriedson714
Posts: 250
Joined: Dec 2019

So I just called my dad's new onc had some questions found out that his new onc and his old onc are both the cancer treatment centers of west michigan . We thought different hospitals meant completly different but they are the same place so my question is this a true second opinion ? My dad is really bothered by this cause the orignal onc told us there was nothing else he could do and sent us to this one . 

SandiaBuddy's picture
SandiaBuddy
Posts: 1172
Joined: Apr 2017

It seems that some doctors have a financial incentive to keep business within their practice groups and do not want patients going elsewhere. I had a problem where my colonoscopy doctor refered me to a surgeon in his practice group.  I did not like the surgeon and the colonoscopy doctor refused to make a referal to any other surgeon which delayed my surgery for quite a while.  That may or may not be a factor for your father, but if he is unhappy with the referral, it makes sense to have a second opinion from someone who is truly independent.  Doctors can vary widely  in their opinions and approaches, I found that out when I switched oncologists, to my benefit.

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

If one doctor referred you, it probably is in the same network.  There are a lot of great hospitals in Grand Rapids, but most of them are all affiliated one way or another.  I'm in a network down in the Detroit area which is totally different.  You would need to see if the insurance your father has is covered "out of network" because if it isn't, you will end up paying a good price for services not covered if your dad is on medicare/medicaid.  It is very beneficial to get a second opinion out of your network if possible.

Kim

NewHere's picture
NewHere
Posts: 1330
Joined: Feb 2015

I had something similar, though I also immediately had another surgeon lined up.  My PCP set it up even before I met with the first surgeon to give me options.  I was close to going with the first surgeon right off the bat, this was all dropped on me so quickly and was still not fully processing/thinking. "Wait, I have cancer, I need to take care of it," as oppossed to taking a breath and stepping back.  I had an EKG and other tests while I met with him, ready to go.  Then asked one question.  At that time I do not know what I know now, but had a bit of knowledge.  The response made it clear going with him would have been a mistake.  I am pretty sure I would not be here today if I did.

There is going to be some finanicial interests in keeping things in practice groups or hospitals.  There is also the ease of reference, the doctors know one another and are going to think the doctors they are referring you to are good.  If they were not good, they probably would not longer be in the practice.  That being said a pracitical reason to look outside the practice groups - a different set of eyes from a different perspective.  There are going to be standards and protocals for cancer in general ("Surgery, then 12 rounds of FOLFOX") but there are also going to be perspective from different places.  A good example.  I go to Memorial Sloan Kettering.  One of the best in the country, and ranked #1 in some cancers.  Yet even they said check in with Dana, Yale and other places to see what trials they have going on.  Additionally, even though MSK went deep into testing on my tumor, Yale had a couple of other tests/look at certain mutations with a different eye.

We can all drive ourselves crazy trying to find an answer that we want, so try not to go too far into the weeds on this.  But to get a second or third opinion from different places is something you should do for your peace of mind and to feel comfortable in the decision making process.  One thing to keep in mind, and me being 6 years into it, there are always going to be the what ifs/questioning of choices down the road.  Try not to let it get to you too much.  

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

My onc scared the s*** out of me when I started asking intelligent questions based on research.  His reply was "Well, somebody has been Reading."  Another time he said  "It would be better if we could put patients in a coma for 3-4 mths to treat them."  Just Wow!!!  He was kind of shocked his real opinion came out of his mouth.

I stayed with him because I didn't know what to do at the time but the hair on the back of my neck stood up for real.  I will never forget it!!!  When I got a BETTER plan in place I went on the hunt.  Finally have my care moved under my surgeon, intergrative oncologist and an ND.  

You have to get those second and third opinions outside of facility you are at for the best choices in my opinion.

cinda
Posts: 65
Joined: Jul 2019

I called someone on my own for second opinion . It was at a different place but now I realize in the same network. didn't even touch me just went by paperwork. Told me nothing can be done and then prayed that everything was right with me and god. Not what I expected. Thought he'd do his own test and form his own opinion. My family doctor sent me for third opinion, but she's in that network so he was two. Same thing didn't touch me ,said I'm dieing and go enjoy my days as best I can. So I agree ,unless you get out of network you won't get any help. Don't give up keep trying to find someone.

yetti's picture
yetti
Posts: 43
Joined: May 2019

I have/  had stage 4 endometerial cancer. I had gone to a local onc group for my chemo after my Dx. From a Gyn onc !  I had 6 rounds of chemo aug to nov end 2018 every 3 weeks.   Chemo had good results. Then I had hysterectomy in Jan 2019 but then was told 3 more chemos. But before that I had a normal level on ca125  and clear pet  scan  but still did 3 more chemos with Avastin  3 hardest treatments ever ! i asked onc how many more chemos he said " we already discussed that and he wouid not give me an answer  it was March 29 2019  I went home  very upset  on a fri afternoon after my chemo,  I was watching tv and saw the cancer treatment centers of America commercial came on I copied down their phone #  and called them spoke to a patient advocate, they answered my ?s about how I get there  they pay for my flights there  from fla to GA  stay in local hotel at their discount They have shuttle service to and from hotel to  treatment center !  I was then connected with a patient manager   They obtained all 90+ records  and my husband and I flew up to Ga April,15-18  2019  they ran their own labs and I had a ct scan, on the 18th we met with the Gyn onc  who examined me ! He then told us from all the results they received from ct and Ca 125  cancer marker  I was NED, my husband and I were very happy and surprised! I returned home and the local onc group called me to find out when I would be coming back for chemo! I told them I got a 2nd opinion Bc their onc refused to answer my ? As to how many more chemos They were planning for me !   I was told by the onc at CTCA  that if I continued chemo while I was NED  I could become resistant to it if I ever needed chemo due to a reccurence !   Get a 2nd opinion go out of state if you have to  ! I love CTCA  I wish I would have gone there at Dx !

 

 

suzycruise76's picture
suzycruise76
Posts: 145
Joined: Mar 2019

this is an amazing story! It shows the truth that you need to be your own advocate,which I had learned on this site.

Congratulations, and stay NED forever!!!

All the best,

Suzy

pbiflyer's picture
pbiflyer
Posts: 6
Joined: Jan 2021

I not only did a second, but a third opinion, and so happy I did. I was orig diagnosed with T3N1 rectal cancer after removal of a polyp that was cancerous. But there was concern about the accuracy of the diag. I went for a second opinion at University of Miami.

Multiple scopes and tests later, they said it likely wasnt T3. But no definitive answer.

My local surgeon had recommended a oncologis who recommended a radiation oncologist. Each wanted the maximum treatment in their field. Long chemo from the oncologist, 8 weeks of radiation from the rad oncologist, LAR surgery from the surgeon. 

Miami who has a large group recommended only LAR surgery, but also said we could take a wait and see monitoring approach. 

Confused as to what path to choose, I opted to see a third surgeon at the Cleveland Clinic. They took a look at all the tests and biopsy results with an objective view. They felt TEM surgery for local excision was a better option to at least determine the T stage. LAR surgery, if needed could be done later, with little risk. Surgery showed that all the cancer was removed with the original polyp removal.

If I went with the first opinion, it would have been a long road that ultimately would not have been needed.

I think an independent second opinion is a good idea to bring either clarity or confirmation.

Totally agree about being your own advocate.

Tom M.
Posts: 174
Joined: May 2019

It never hurts. Most of us do it.

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