What are the options now - recurrent cancer!!

bala07

We have been trying to chase a soft tissue lesion along right internal illiac region since 6 months that showed up in PET scan with high SUV. Went in for laproscopic removal of the same and the biopsy came negative. But CEA continued to rise so went for PET scan after 3 months which showed the same soft tissue grown from 2.7 to 3.9 cm which means surgeon did not remove it. So went for open surgery again hoping to remove it. The same story repeated, biopsy came negative and CEA continued to raise, when we went for another PET scan couple days back, the same soft tissue is grown from 3.9 to 4.2 cm and new nodes in common illiac and right internal illiac region have shown up with the largest one measuring 1 cm.

 

Our onc this time suggested, chemo(FOLFIRI + avastin) is the only option.

Want to know, if there is any other option right now.

If we are taking chemo, what should we expect this time?

Thanks a lot for any inputs.

 

Bala

Son of Mom-

May'11 - LAR to remove tumour in rectum,

10/26 nodes +ve,

Radiation + chemo(FOLFOX) till Nov'11.

Dec'11 - PET scan clear

janderson1964

Your best option is to seek a
Your best option is to seek a second or even third opinion.

annalexandria

Hi Bala, and welcome to the board.

I'm sorry you have to join us, but now that you're here, I hope we can offer some support to you and your mom.

I have had issues similar to your mom...I had several recurrences, some of which were cancer deposits in various parts of the abdomen.  I have had several surgeries to get them all out.  

I think my first question would be, why were they not able to find this tumor?  Especially after the open surgery.  It seems very odd to me that they could miss it so completely (I would say that the negative biopsy suggests that they weren't in the right area, rather than this thing actually being benign...the rate of growth suggests not).

I would be concerned about the skills of your mom's surgeon.  Is he/she an experienced colorectal surgeon?  If not, I would suggest getting a 2nd opinion with someone who has more experience.  There are surgeons who specialize in crc surgery.

With localized recurrence like this, chemo doesn't necessarily seem like the best route, imo (and based on what my doctor said in my own case).  Surgery tends to be more effective, and is the only route to a possible cure.  It's hard to be a strong advocate in these situations, but this one sounds to me like one where some advocacy is much needed.  Is your mom able to be assertive with her doc, and find out how the heck they  missed this growth not once, but twice?

bala07

annalexandria said:

Hi Bala, and welcome to the board.

I'm sorry you have to join us, but now that you're here, I hope we can offer some support to you and your mom.

I have had issues similar to your mom...I had several recurrences, some of which were cancer deposits in various parts of the abdomen.  I have had several surgeries to get them all out.  

I think my first question would be, why were they not able to find this tumor?  Especially after the open surgery.  It seems very odd to me that they could miss it so completely (I would say that the negative biopsy suggests that they weren't in the right area, rather than this thing actually being benign...the rate of growth suggests not).

I would be concerned about the skills of your mom's surgeon.  Is he/she an experienced colorectal surgeon?  If not, I would suggest getting a 2nd opinion with someone who has more experience.  There are surgeons who specialize in crc surgery.

With localized recurrence like this, chemo doesn't necessarily seem like the best route, imo (and based on what my doctor said in my own case).  Surgery tends to be more effective, and is the only route to a possible cure.  It's hard to be a strong advocate in these situations, but this one sounds to me like one where some advocacy is much needed.  Is your mom able to be assertive with her doc, and find out how the heck they  missed this growth not once, but twice?

Thanks for the comments.
The

Thanks for the comments.

The surgeon we had gone for open surgery is very experienced surgical oncologist.

When we went back to him with the report he said this one is quite down to reach middle of nerve which would have been highly riskier if we had tried to remove, so did not go down till this point. BUT he should have analysed this before the surgery!!

 

After 2 unsuccessful surgeries, we really dont want to consider a third one in the same area.

Our medical onco said re-radiation could also cause side effects because of the area and because its second time in bowel.

 

bala07

annalexandria said:

Hi Bala, and welcome to the board.

I'm sorry you have to join us, but now that you're here, I hope we can offer some support to you and your mom.

I have had issues similar to your mom...I had several recurrences, some of which were cancer deposits in various parts of the abdomen.  I have had several surgeries to get them all out.  

I think my first question would be, why were they not able to find this tumor?  Especially after the open surgery.  It seems very odd to me that they could miss it so completely (I would say that the negative biopsy suggests that they weren't in the right area, rather than this thing actually being benign...the rate of growth suggests not).

I would be concerned about the skills of your mom's surgeon.  Is he/she an experienced colorectal surgeon?  If not, I would suggest getting a 2nd opinion with someone who has more experience.  There are surgeons who specialize in crc surgery.

With localized recurrence like this, chemo doesn't necessarily seem like the best route, imo (and based on what my doctor said in my own case).  Surgery tends to be more effective, and is the only route to a possible cure.  It's hard to be a strong advocate in these situations, but this one sounds to me like one where some advocacy is much needed.  Is your mom able to be assertive with her doc, and find out how the heck they  missed this growth not once, but twice?

Thanks for the comments.
The

Thanks for the comments.

The surgeon we had gone for open surgery is very experienced surgical oncologist.

When we went back to him with the report he said this one is quite down to reach middle of nerve which would have been highly riskier if we had tried to remove, so did not go down till this point. BUT he should have analysed this before the surgery!!

 

After 2 unsuccessful surgeries, we really dont want to consider a third one in the same area.

Our medical onco said re-radiation could also cause side effects because of the area and because its second time in bowel.

 

RobinKaye

bala07 said:

Thanks for the comments.
The

Thanks for the comments.

The surgeon we had gone for open surgery is very experienced surgical oncologist.

When we went back to him with the report he said this one is quite down to reach middle of nerve which would have been highly riskier if we had tried to remove, so did not go down till this point. BUT he should have analysed this before the surgery!!

 

After 2 unsuccessful surgeries, we really dont want to consider a third one in the same area.

Our medical onco said re-radiation could also cause side effects because of the area and because its second time in bowel.

 

I wouldn't be too hard on the

I wouldn't be too hard on the surgeon,  nodes along the iliac are really tricky. The first surgeon my husband had (fired) wouldn't 

even attempt to remove the nodes. The second said it wasn't 100% but he would give it all he had to remove them.  In the interim another CT was done for something else. After the initial chemorad three of the nodes had tripled in size becoming "soft tissue masses".  Two rounds of FOLFOX shrunk or eliminated them.  Either they were too small to be visible to the surgeon or they were gone so he didn't have to do anything.   

Surgery is always best when it's possible, but these nodes are not routinely removed in the states. Japanese doctors remove iliac chain nodes as part of the initial cancer resection.  It sounds like your surgeon did try, sometimes they don't know until they try 

annalexandria

bala07 said:

Thanks for the comments.
The

Thanks for the comments.

The surgeon we had gone for open surgery is very experienced surgical oncologist.

When we went back to him with the report he said this one is quite down to reach middle of nerve which would have been highly riskier if we had tried to remove, so did not go down till this point. BUT he should have analysed this before the surgery!!

 

After 2 unsuccessful surgeries, we really dont want to consider a third one in the same area.

Our medical onco said re-radiation could also cause side effects because of the area and because its second time in bowel.

 

Sounds like you had a good surgeon then.

I do know from my own surgeries that they sometimes don't know what they're dealing with until they get in there, even with extensive scans done ahead of time.   I think that is unfortunately prettty common.  And the only thing I will say about another opinion is that all surgeons have different ideas about what is safe and what isn't.  I had iliac nodes removed, as well as para-aortic nodes, both of which are sites that some surgeons are not comfortable cutting (maybe because my surgeon was from Asia?  I don't know, but he did take way more nodes out than is standard).  So it it possible that another opinion might be useful (or would confirm that there is nothing more to do surgically, which is also useful info).

And if your mom hasn't done chemo before, or has done it with good results, then trying that route would make sense if surgery is off the table, at least for the time being.

Keep us posted.