what to ask the surgeon - updated - holding off on surgery

jen2012

Meeting with the surgeon tomorrow -after my husbands first pet scan. He's had 6 folfox treatments...only 3 with avastin. We will be asking about his experience with the surgery. He seems to be a good surgeon, all speak highly of him...he was referred by a doc friend. another local hospital does davinci but this one does not. what else should we discuss with him?

Update - 12/5: Surgeon said that the pet scan looked good! Some much needed positive news!! The para-aortic lymph nodes are not lighting up and nothing new is showing, rectal tumor has shrunk a bit. Onc wants to wait and do more chemo since it's working well. Thinking surgery maybe in the spring. He started chemo mid-sept. Anyone think waiting that long could be a problem? Should we ask more questions or get another opinion?

Sundanceh

I Did the Da Vinci:)
And I've done the 'open' procedures too...

As for what to ask...I think at some point, you just have to trust that you've made the right decision.

I'd discuss what the general plan of attack will be...recognizing that the field of battle can always change once the patient's insides are opened.

Speaking of which, sometimes the 'open' procedure is actually better...because it opens up a bigger theater for the surgeon to manuever...and they have a better field of vision to see where cancer may or may not be.

Just get an idea of what's he's going to do...how long they plan to operate...how long in ICU? How long in the hospital? Etc.

Let's hope for some good news for your team:)

-Craig

janderson1964

Sundanceh said:

I Did the Da Vinci:)
And I've done the 'open' procedures too...

As for what to ask...I think at some point, you just have to trust that you've made the right decision.

I'd discuss what the general plan of attack will be...recognizing that the field of battle can always change once the patient's insides are opened.

Speaking of which, sometimes the 'open' procedure is actually better...because it opens up a bigger theater for the surgeon to manuever...and they have a better field of vision to see where cancer may or may not be.

Just get an idea of what's he's going to do...how long they plan to operate...how long in ICU? How long in the hospital? Etc.

Let's hope for some good news for your team:)

-Craig

I agree with the open
I agree with the open surgery is better philosephy. My surgeon found a lump on my abdominal wall last time which the CT scan didnt reveal so he removed just in case. The pathology report showed it was cancer. Nothing like having a good surgeon.

jen2012

janderson1964 said:

I agree with the open
I agree with the open surgery is better philosephy. My surgeon found a lump on my abdominal wall last time which the CT scan didnt reveal so he removed just in case. The pathology report showed it was cancer. Nothing like having a good surgeon.

Hmmmm...good point we hadn't
Hmmmm...good point we hadn't considered. Glad I posed the question. Thank you both!

jen2012

Surgeon said that the pet
Surgeon said that the pet scan looked good! Some much needed positive news!! The para-aortic lymph nodes are not lighting up and nothing new is showing, rectal tumor has shrunk a bit. Onc wants to wait and do more chemo since it's working well. Thinking surgery maybe in the spring. He started chemo mid-sept. Anyone think waiting that long could be a problem? Should we ask more questions or get another opinion?

Sundanceh

jen2012 said:

Surgeon said that the pet
Surgeon said that the pet scan looked good! Some much needed positive news!! The para-aortic lymph nodes are not lighting up and nothing new is showing, rectal tumor has shrunk a bit. Onc wants to wait and do more chemo since it's working well. Thinking surgery maybe in the spring. He started chemo mid-sept. Anyone think waiting that long could be a problem? Should we ask more questions or get another opinion?

Spring Will Make It About 6-Months, Right?
Well, Jen

With the chemo, he (ain't) going anywhere:)

It sounds solid enough...a full regime of chemo...and then the re-evaluation...any shrinkage is always a plus for surgery.

I will be curious as to whether they suggest post-surgery chemo as part of the plan. And if so, would it be the same - or switching to another?

I like surgeries when I can get them...I've been lucky to have qualified for each of them...it's the biggest weapon we've got...and generally speaking, is what keeps us out beatin' the bushes:)

I'd take this good news...wrap this package...put a bow on it...and have Santa slide it under the tree for both of you this year.

I like seeing you smile...can you do it again? For me?

-Formerly Santa Craig (long story:)

jen2012

Sundanceh said:

Spring Will Make It About 6-Months, Right?
Well, Jen

With the chemo, he (ain't) going anywhere:)

It sounds solid enough...a full regime of chemo...and then the re-evaluation...any shrinkage is always a plus for surgery.

I will be curious as to whether they suggest post-surgery chemo as part of the plan. And if so, would it be the same - or switching to another?

I like surgeries when I can get them...I've been lucky to have qualified for each of them...it's the biggest weapon we've got...and generally speaking, is what keeps us out beatin' the bushes:)

I'd take this good news...wrap this package...put a bow on it...and have Santa slide it under the tree for both of you this year.

I like seeing you smile...can you do it again? For me?

-Formerly Santa Craig (long story:)

Thanks Craig! We were/are
Thanks Craig! We were/are smiling We found out last week that our 12 yr old has type 1 diabetes. I was so anxious about this appt feeling like we keep getting kicked down. We really needed a positive - we fully understand this doesn't mean everything is going to be okay, but every little bit of good news is awesome!

I did ask the surgeon if they thought he'd be on chemo forever and it sounded like they are thinking zeloda (sp?), but I'm sure the onc will talk about that more.

Chelsea71

jen2012 said:

Thanks Craig! We were/are
Thanks Craig! We were/are smiling We found out last week that our 12 yr old has type 1 diabetes. I was so anxious about this appt feeling like we keep getting kicked down. We really needed a positive - we fully understand this doesn't mean everything is going to be okay, but every little bit of good news is awesome!

I did ask the surgeon if they thought he'd be on chemo forever and it sounded like they are thinking zeloda (sp?), but I'm sure the onc will talk about that more.

I'm so glad you guys got
I'm so glad you guys got some good news today. Waiting till spring makes sense to me, providing they keep him on chemo. You guys should do something special this week-end to celebrate.

Congratulations

Chelsea

jen2012

Chelsea71 said:

I'm so glad you guys got
I'm so glad you guys got some good news today. Waiting till spring makes sense to me, providing they keep him on chemo. You guys should do something special this week-end to celebrate.

Congratulations

Chelsea

Thanks Chelsea - we will
Thanks Chelsea - we will celebrate for sure!

One of my son's teachers, who has been so incredibly wonderful for the last week since his diagnosis, told me that her brother had stage 4 crc 8 yrs ago - liver & lymph nodes and he is now cancer free. Hasn't been an easy road for him, but he's still here.

Chelsea71

jen2012 said:

Thanks Chelsea - we will
Thanks Chelsea - we will celebrate for sure!

One of my son's teachers, who has been so incredibly wonderful for the last week since his diagnosis, told me that her brother had stage 4 crc 8 yrs ago - liver & lymph nodes and he is now cancer free. Hasn't been an easy road for him, but he's still here.

That's really nice to hear.
That's really nice to hear. Very encouraging.

Chelsea

janie1

Chelsea71 said:

That's really nice to hear.
That's really nice to hear. Very encouraging.

Chelsea

News
Great news Jen. The plan makes sense.
And that was nice of that teacher to tell you about her brother being Stage4 and now cancer free.
Love to hear all those good stories.

Joan

barbebarb

janie1 said:

News
Great news Jen. The plan makes sense.
And that was nice of that teacher to tell you about her brother being Stage4 and now cancer free.
Love to hear all those good stories.

Joan

Good story to hear
Love hearing this story! Needed to hear this too!
Good news for your plan going forward.

Barb

WinneyPooh

Depending on size of rectal tumor
Jen, you need to consider size and placement of rectal tumor, if the chemo can shrink enough to have it removed and cause as little damage age as possible he will be more than likely able to pooh like normal, but if tumor is to big he may have to remove more tissue and your husband maybe will have to have an illi or an colostomy bag for a while you need to discuss and research these things, also if he waits to long and the tumor grows fast he can get a blockage and his intestine can explode and then he's in real life threatening way, any severe abdominal pain like he is giving birth take him to the hospital don't wait until you see the blood or he is screaming uncontrollable, ( for me I made it just in time 12 hours later I was a live thankfully and in recovery spent 21 days in the hospital. left with an colostomy) Since been reversed. Most horrifying experience ever. has your doc, discussed radiation, good choice to shrink tumor in rectum. What stage he is may also have a lot to do with chemo first and where the other mets are. Get second opinions and visit a teaching hospital with a specialized surgery center just for cancer if possible.
Don't assume your Doc. has all the answers especially if your in a small town.
Best of Luck and my God watch over us all
winnie

jen2012

WinneyPooh said:

Depending on size of rectal tumor
Jen, you need to consider size and placement of rectal tumor, if the chemo can shrink enough to have it removed and cause as little damage age as possible he will be more than likely able to pooh like normal, but if tumor is to big he may have to remove more tissue and your husband maybe will have to have an illi or an colostomy bag for a while you need to discuss and research these things, also if he waits to long and the tumor grows fast he can get a blockage and his intestine can explode and then he's in real life threatening way, any severe abdominal pain like he is giving birth take him to the hospital don't wait until you see the blood or he is screaming uncontrollable, ( for me I made it just in time 12 hours later I was a live thankfully and in recovery spent 21 days in the hospital. left with an colostomy) Since been reversed. Most horrifying experience ever. has your doc, discussed radiation, good choice to shrink tumor in rectum. What stage he is may also have a lot to do with chemo first and where the other mets are. Get second opinions and visit a teaching hospital with a specialized surgery center just for cancer if possible.
Don't assume your Doc. has all the answers especially if your in a small town.
Best of Luck and my God watch over us all
winnie

Thanks Winnie - sounds like
Thanks Winnie - sounds like you've been through more than your fair share.

The tumor was never big enough to cause obstruction - he only had symptoms for a few weeks before seeing the doctor - it seems crazy that it made it to stage 4! He only had distant lymph node (para-aortic) involvement. I guess we are lucky that this surgeon isn't hesitant to remove those nodes - from what I've read, many will not. He removed a couple for the biopsy and said he'll remove more when he does the rectal surgery. He said it is slightly possible he may be able to avoid the colostomy/illeostomy, but wouldn't know until he got in. He said he usually does do the illeostomy to help with risk of infection. We did see the radio onc, but they suggested no radiation - partly because he's stage 4 and partly because he's already had radiation (which quite possibly caused this tumor) 14 yrs ago for testicular cancer.

herdizziness

jen2012 said:

Thanks Craig! We were/are
Thanks Craig! We were/are smiling We found out last week that our 12 yr old has type 1 diabetes. I was so anxious about this appt feeling like we keep getting kicked down. We really needed a positive - we fully understand this doesn't mean everything is going to be okay, but every little bit of good news is awesome!

I did ask the surgeon if they thought he'd be on chemo forever and it sounded like they are thinking zeloda (sp?), but I'm sure the onc will talk about that more.

Good for Shrinkage!!!
As for the Xeloda, it's a pill form of chemo, it's been very easy on my body. I take two times a day, 3 pills for a total of 1500 mg in morning 1500 in evening for 2 weeks then off a week.
Keep that shrinkage going, happy dance time about that at least!!!
So sorry to hear about the type 1 diabetes of your 12 year old.
Winter Marie