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WHO SHOULD LEAD THE TREATMENT?

lp1964's picture
lp1964
Posts: 829
Joined: Jun 2013

Being relatively new to this, but I start to see that, as many of the veterans said it here before, the surgeon has to lead the treatment as long as the surgery is an option. Chemo and maybe even radiation is only an adjuvant to removal of the cancer. Don't want to reduce the significance of these adjuvant therapies, but many times they are unpredictable and their side effects are severe. Also it is hard to judge the success of the surgery, but it is a much more exact treatment and it gives the patient at least the sense that the cancer is out of your body. 

What do you all think?

Laz

janderson1964
Posts: 1502
Joined: Oct 2011

I agree 100%. I go immediately to my surgeon when something new shows. Surgery overides ALL other options in my opinion. In fact I don't even have an oncologist now. I am dealing with everything through my surgeon but that is just my humble opinion.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

also when i was dx stage 4 in 2011 i just handed the reins over to my surgen and said i want you to take control so he found my onc for me who he works with and has regular meetings with but now that i am inoperable and chemo for life my onc is treating me and surgen is more or less out of the loop.good luck...Godbless...johnnybegood

db8ne1's picture
db8ne1
Posts: 68
Joined: Feb 2013

I've found that you have to be your own advocate.  While the docs, surgeons, radiologists, and oncologists all mean well, they all have their limitations and are not gods.  Do your research.  Question, question, and question.

I was fortunate that I was referred to an oncology team with a great radiologist who took the "lead".  My oncologist seems to be more of a laid back "follower" and not very direct at answering questions.  I've had to train him that I won't hold him to his opinions...  My chemo/radiation eradicated my T3 rectal tumor and suspicious lymph nodes. By the time I had surgery, the tumor was reduced to a lesion.  Post surgery pathology showed no cancer cells remaining in "lesion" or any lymph nodes.  Chemo/rad was 100% succesful in not only shrinking - but getting rid of the tumor and problematic nodes.  (Although I'm sure I will have long term effects from the radiation - it did what it was meant to do).

Post surgery FOLFOX is now complete so I asked my tentative oncologist what the next steps were - given that the reoccurance rate for this type of cancer is very high in the 2-3 years post surgery/treatment.  He indicated the protocol was CBC/chem panels every 3 months and yearly CT.  I had to point out to him that CEA marker tests are only effective/useful in 60% of patients.  Before I had ANY treatment and cancer was full blown - my CEA was 1.0.  AFTER surgery and FOLFOX treatment my CEA is 1.0.  I'm obviously in the 40% where CEA is useless.  So, I disagreed with the CT scan once a year regimen.  He sheepishly agreed and said he could order them more often.  YOU THINK???

The moral of the story is - YOU are your best advocate.  So, arm yourself with as much info as you can and while you should certainly get your docs opinions - as that is what they study for and are paid for - ultimately all decisions lie with you.

Best of luck!

lp1964's picture
lp1964
Posts: 829
Joined: Jun 2013

...opinion and I tend to agree that if you do your research and participate in a forum like this, you can come up with the best solution for you with your medical team. 

I don't know why my rectal cancer did not react to the radiation at all. 

Laz

db8ne1's picture
db8ne1
Posts: 68
Joined: Feb 2013

As you know, we all react differently to treatments as we all have different chemical make ups, etc.  Plus, all docs/radiologists/oncologists are better at some things than others.  They all have their strengths and weaknesses.

Chemo rad is targeted to shrink tumors - but it's not always effective.  (Again, because we are all different). Ultimately, we all have to have surgery to remove this kind of tumor anyway.  That and the post surgery chemo wraps it all up to target the micro cells left after the pre surgery treatment and surgery. 

In my opinion, it's all a crap shoot anyway.  Pun intended!

Cathleen Mary
Posts: 517
Joined: May 2011

I have a great PCP who makes sure everyone talks to each other. I consider her my point person but trust both my onc and surgeon. When a difficult decision had to be made, she got us all in the same room to talk it out. That said, I tend to like things that wern't with me at birth OUT of my body.

Cathleen Mary

Fucc
Posts: 84
Joined: Sep 2012

Surgery first, it can cure....chemo second as hopefully it can control, shrink or lead to surgical intervention.

lp1964's picture
lp1964
Posts: 829
Joined: Jun 2013

...I disagreed with you. Now that my tumor didn't react to radiation and chemo, I say surgery first too. But this is only my specific situation and in hindsight. Back when I was diagnosed I had to give radiation and chemo a chance, because I had some chance for not needing surgery or only limited surgery. I could not imagine just going for the radical surgery. Now, even tough I'm somewhat disappointed, I'm calmer, because I know exactly what I need to do.

Laz

thxmiker's picture
thxmiker
Posts: 1198
Joined: Oct 2010

One must advocate for themselves!   Bottom line, many Docs have their own self interest in your care.  There are ocasional Docs that do not put their well being above yours. (Dr. Lenz USC) To many docs are worried about thier bottom line before your health.

 

Chemo is great for you, when they are making thousands of dollars per treatment.  When they screw up, you end up in the hospital suffering and they make thousands of dollars more consulting to save you.  REALLY!   You  MUST be your own advocate. If it does not make sense, then do not do that treatment.  End of Story!

 

Wshing and praying for your best outcome!

Best Always,  mike 

tanstaafl's picture
tanstaafl
Posts: 936
Joined: Oct 2010

We got a serum CA19-9 at the threhold of elevated, drawn before surgery. My wife used high dose cimetidine, 4weeks before, during and after surgery to prevent metastasis even without the CA19-9 results back (about 2/3 of advanced CRC patients have CA19-9 positive tissues).  Along with other immune related supplements.  Big bonus, a lot of necrosis presurgery in places like the mets in the mesentery and peritoneum.... 

Coppercent
Posts: 142
Joined: Jan 2012

I think the patient should lead the treatment but that being said its a team that makes this journey successful.  When I was first diagnosed I made an appointment the same week with an oncologist and a surgeon and got both of their opinions. I went with the oncologist and surgeon I thought were the best for me. They are in different hospital systems but they are willing to work together so it works. Now when something new pops up I meet with the oncologist then my oncologist meets with my surgeon and then I meet with my surgeon and oncologist individually and they give me their opions and I weigh my options and make a decision.  Usually my oncologist, surgeon and I agree on the plan but there have been times when my surgeon and oncologist have disagreed. I tend to go with surgery if that is an option but we are all different.

annalexandria's picture
annalexandria
Posts: 2171
Joined: Oct 2011

My oncologist made some serious errors, and my surgeon was much more accurate in the recommendations he made for me.  So now I trust my surgeon way more.   Even had him make my referral for a scope after I got some iffy results on my last scan.  My onc didn't want to, so I just asked my surgeon to do it for me.

But that is largely 20-20 hindsight.  I started out assuming that my oncologist (who is the head of a large oncology department in Seattle, and on the Tumor Board) would know what he was doing.  Learned the hard way that that was not necessarily the case.

I also agree with others that being one's own advocate is very important, but that's also something that most of us don't realize at the beginning of this process.

There is a painful amount of learning that goes on after a cancer dx.

AA

janderson1964
Posts: 1502
Joined: Oct 2011

I agrre with you Anna. I totally trust my surgeon. That is why I don't even have an oncologist anymore. Similar situation for me with my last oncologist. I wnet to him to integrate everything in one NCI cancer center with my surgeon. Before that there was a big disonnect between my first oncologist and my surgeon. i had to be the go between to get things done. So I asked my surgeon to recommend an oncologist and he recommended my last oncologist who specialized in GI cancers. What an overwhelming diappointment he was over the past 1 1/2 years. There was no communication between him and my surgeon. In fact at one point he had forgotten what hospital I had my last surgery at. HIS hospital. Are you kidding me! Then he would flip flop back and forth on his treatment plans for me. he would never return my calls or emails. But my surgeon responds to my emails immediately and he is the chief of the entire surgery department so I think he is a little busier than my former oncologist.

He had the nerve to send in a nurse practitioner to tell me there was a small suspicious spot on my last CT. He had just got back from vacation that day and was too busy catching up for me.

I've mentioned on here before the last ime I saw him was to get results for a follow up MRI for the spot on the CT. It was inconclusive. This time he made the time to tell me himself. I guess I should have been honered by his presence. He told me If it turns out to be cancer I couldn't have another liver resection since I already had 2. I said you are already wrong since I had 3 resections. What a jerk. I think he just wanted to pump me full of chemo again.

He wouldn't even respond when I wanted my port removed so I contacted my surgeon and he removed it for me within 2 weeks.

I also contacted my surgeon after this most recent spot and he said he would do another resection if needed. No problem.

I did some research and apparently there is no limit to the number of resections you can have as long as your liver has regenerated and healthy is the way I understand it. I just think it is so rare for people to have more than 2 due to the cancer being too wide spread or other liver issues.

Sorry, I got off topic but reading your post got me fired up again. In a good way though. It just makes me more aunery and fight harder.

annalexandria's picture
annalexandria
Posts: 2171
Joined: Oct 2011

It's very pertinent to the original question, I think.

There are some truly crappy docs out there, and it's up to us as patients to make the call when to fire them from our care.

I still technically "see" my oncologist, as he orders my scans, but I haven't seen him in reality for two years.  He doesn't even contact me anymore after I get them, just posts the results from the radiologist online for me to read.  I got a call a while back to come in because it had been over a year and they wanted me to check in with him, and I told them no, that wouldn't be needed.

This particular doc made mistakes that almost killed me, so I don't really feel the need to pop in for a chat.

I'm not sure everyone realizes how little you actually need the oncologist, when you are focusing on surgery to get to remission or cure.

tanstaafl's picture
tanstaafl
Posts: 936
Joined: Oct 2010

Surgeon, alternative/internal medicine dr and personal radiologist lead their areas. No oncologist since we're largely DIY research based chemistries and labs, with very low side effects and very low tumor residuals, I lead that.  We never found an oncologist that we could get satisfactory answers and cooperation.   Anything starts to grow out of control, we're looking at the surgeon(s).

hippiechicks
Posts: 302
Joined: Sep 2012

My surgeon is the one I go to for sure.  Saved my hiney more than once so that is where my trust is!

There is something to be said for the fact that they are the ones who have actually seen what is going on inside and have seen the side affects of surgery, chemo and radiation.  They are the ones who in my opinion can give the best advise just for having that knowledge. They see us at our worst and see how we respond to major physical stress. With that said ... I agree that this really is a group effort and takes excellent communication between all parties to have the most successful outcome.

I've got a good one that puts my interest first ... has no problem telling me truth and that is what I want to hear.  

No time for games with this DX.  

Also not insulted if I ask for referrals for second opinions.  

Top notch! Wink

BTW ... great wedding picture!! You guys look so happy together!! My best to you both!

Happyhar
Posts: 49
Joined: Apr 2010

This discussion is exactly why this community is so valuable. Thank You ALL.

marbleotis's picture
marbleotis
Posts: 473
Joined: Mar 2012

I think that we (the patient) needs to drive that bus.

We have our experts that are on the bus, but we drive it.

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Went straight to my surgeon....

Only p;roblem is that he "OPTED OUT" on me this time....my case concerned him enough that he he didn't want to be the point if anything went wrong.  The location is not good for either tumor location. so he didn't feel like surgery would help.

We can scream surgeon....and ultimately (as with any money driven business) you can always find someone who might take the chance. 

But, my whole medical team froze and deferred back to the oncologist....liver surgeon/lung surgeon/director of radiation.....strike 1-2-3....and I was out.

When you can get their opinion and support, that's great....but if they don't agree, you might be left with nothing or going back to your oncologist.

Not the way we might always want it....but sometimes cancer does not always advocvate choices for you.....sometimes they are simply made for you. 

And yeah, you can hunt and find another one....but I'm so sick most days, I don't have the energy to comb the net, send off files, set uip appts and fly around the states looking for the best setup.....I'm just not in a physical p;osition to do that right now. 

Where I'm at, I'm not even sure if I'd want to go back to the other hospitals I've stayed at.

Anyway...good discussion.....as said, eventually, WE decide what we will do or won't....regardless of the doctor's opinions.

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