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Well, that didn’t go as I expected.

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

So dad met with surgical oncologist and had sigmoidoscopy today. He was prepared with his list of questions about starting certain meds before surgery, what the initial pathology may infer, things of that nature; and he was told "I don't answer those questions, you can ask your oncologist. I'm going to perform the surgery and it's possible you may have a colostomy for a few weeks after and if you need chemo after then the colostomy will stay in place until 3 weeks after you finish that". His first appointment with an oncologist is scheduled for 2 weeks after his bowel resection... which isn't until JANUARY 20th! 

The only question she did answer was that the tumor is about the size of a pistachio. 

Can I get some crowd input here? Does the wait time seem normal? Like is that indicative of maybe this not being so serious? I don't think they could really know if it's not that serious yet; I mean I've read so many accounts of people having mets even though there initial CT looked good (which my fathers did, but no PET scan and he does have a fatty liver so I worry maybe that could obstruct the view of potential mets, idk). 

Oh and she basically said no to obtaining a sample for functional profiling through Dr. Nagourney and stated "well the oncologist will do their testing". WTF. 

To make matters worse I expressed my frustration over the phone when my dad called to tell me how it went, I could sense his disappointment in the lack of help or direction and I worry I came off like I was blaming him for not getting answers when I was actually just dissapointed like he was. 

I'm gonna try and get some info together at least to support starting cimitidine before his surgery so my dad can ask his PCP about that. Other than that I just feel punched in the gut. 

Trubrit's picture
Trubrit
Posts: 5417
Joined: Jan 2013

We are always waiting. Waiting for tests. For results. For Surgery. For chemo. For answers. And then we do it all over again, and again. Cancer teaches patience. 

I remember when I was diagnosed. I had to wait two weeks for surgery, even though the tumour was blocking the colon. It felt like two years. I visualized my tumour growing and growing and growing. It didn't, of course, but the fear plays tricks with your mind. 

You say Does the wait time seem normal? Like is that indicative of maybe this not being so serious?  Cancer is always serious, to us, and hopefulyl to those treating us - though I have heard stories.  Normally CRC grows slowly, so its not like your father's pistacio sized tumour is going to be the size of a grapefruit in january, but thats what you mind will tell you. 

I'm glad the ball is rolling though. It is always good to have a plan. 

Tru

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

I guess your right, I mean, he doesn't have an obstruction or even symptoms. I'm actually just more disappointed that he doesn't have anyone to talk to yet. Think that's where we will have to advocate for him and speak to his PCP. 

Hurry up and wait seems the name of the game. 

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

From the initial diagnosis it will always seem like nothing is going fast enough.  My first colonoscopy was discovered the day before Thanksgiving and my surgeon appointment was a month later, followed by oncologist.  So nothing is rush, rush as you might want it to be.  Usually surgeon's don't know much about how an oncologist will treat the patient either, but it is important that they can consult one another to come up with the best solution.  At my hospital when a patient is diagnosed the case comes before a panel of 10-12 doctors that discuss the best method for treatment.  Hope he can get some of his answers soon.  Sometimes we just have to take a deep breath and a step back and wait.

Kim

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

Sadly the waiting is common I lose much sleep worrying about all this waiting and how it will affect my dad . My dad's last onc appointment they told him it was agressive and may need lifelong chemo . Then the onc says well I have to talk to the surgeon and tumor board and see you again in two weeks . 

I was like wtf you just drop that bomb then oh more waiting but it seems like no one wants to make the call on there own . The standard treament rather it's tumor board or surgeon's and onc's seems to be get a group of doc's and medical people together . The group then comes up with a consenus about what treatment is needed and what is going on . 

That's my guess about what is happening now guess I promise you they take it serious everyone takes cancer serious . As far as how you worrying about how you came across to your dad that's happened to me a few times to . I usually just sit down with my dad explain I am just worried and frustrated with doc's which my dad is used of me being by now . That way there is no miscommuncations between me and my dad cause that just stress's my dad out more maybe try that with your dad just to clear things up a little just a idea . 

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

Uhm,  the Nagourney test is not her call.  It is YOURS.  Correct her sweetly and tell her it is in the works and is expected to be done.  If she can not handle it you will get with pathology yourself to let them know what IS happening.

It is your dads choice to get options not her choice to "hand out" the minimum.

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

Send me your email and I will send you the papers for her to read on the test and I would call Nagourney and have him call her also.

I had Nagourney call my oncologist to explain the test to him as he had never heard of it.  My surgeon had not heard of it either but said it wouldn't do any harm at all in his opinion just to see what might work.  Now he offers it to patients he thinks would be a candidate to benefit from it.

But your dads cancer is very small, but cancer is cancer and it is all dangerous.

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

Sample size is an issue and competes with basic pathology requirements.   Nagourney's and Weisenthal's labs are more common for advanced cancer cases, often known/suspected from blood work and CT or recurrence.    

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

Yes, Nagourney did tell me that also.  He also said that radiation also conflicts and gives a 50/50 shot.  So, when mine was tested he asked for a bigger sample size and surgeon was accomodating but still a no go (cancer was over 75% dead).  For me, it was so worth a shot.

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

Welcome to the medical  battlefield.  Cooperation is not a given at all and hospitals can be the hardest to navigate for extras.  

This first surgical oncologist appears to have at least 2-3 strikes.   First, a board certified colorectal surgeon is the preferred skill set for primary CRC surgery most likely to be optimal, not the less specialized surgical oncologist - you're more likely to wind up with a potentially permanent colostomy and complications.   Second, she's being a horse's posterior (a*s), not patient, cooperative or informing at all - probably a little worse than average. If you don't change their mind easily, you get another doctor.     In, or close to, a big city may make multiple interviews easier.   Third she's being presumptive or commanding before any agreement much less on their turf in the hospital.  Practice and cumulative knowledge can improve the interviews.

We pipelined our surgical/medical consults to find more capable and cooperative doctors.  This means interviews lined up asap without waiting for another interview's (unsatisfactory) outcome.  Take a place on one surgeon's schedule and cancel early as opportunities improve.  You can interview the oncologists after you receive the pathology.   Phone consults may give some background.  You're crunched on time now but we kept interviewing.  As for cimetidine and vitamin D many people take these themselves, but mess up by failure to get a CA199, 25 OH vitamin D, and other extra blood tests themselves asap (e.g. today), or even at all before surgery.

You have to create choices by determined effort, investment and cumulative knowledge.   Armed asap, extra blood tests may give you many insights including chances of stage now and cimetidine effectiveness but that's not standard - you have to get them yourself then find people that can/will help you or read/research individual tests against CRC literature. 

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

Look up the surgeon to make sure she is board certified at 

Is My Doctor Board Certified? Check a Doctor's Board Certification (certificationmatters.org)

I didn't find her name there.  Maybe someone knows of another verification site?

darcher's picture
darcher
Posts: 298
Joined: Jun 2017

   What caught my attention is the size of the tumour. If it's that small, not that a tumour of any size is insignificant, then it's probably "more" curable than many.  Mine was nearly blocking everything and ended up being barely a stage 3 if that. I don't remmber exaclty what it was. Many on here have had very large tumours and came out fine so I take it as encouraging that it was caught this early and might be the reason for their seemingly less than enthusiastic wanting to do a lot more. Like, wanting to get full x-rays for a simple cut. Is it too much for the given size of the problem kind of thing. That could be why.  If it is, count your blessings.   

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