Seeking advice: continuing with chemo or seizing the opportunity of surgery?

SummerLight

 

 

Hello all.

 

My father was diagnosed with stage 4 rectal cancer in mid-July. Conoloscopy found the mass in his rectum (5.6 cm in length), and then PET-CT scan confirmed metastases in his liver (up to 9 cm), lungs (0.2-0.6 cm), and lymph nodes. CEA was 346 and CA 19-9 was 238 as of July 21. So, it was very serious and his oncologist told me that the liver might start to fail without immediate treatments. Obviously, surgery was not an option due to the multiple metastases. We didn’t talk about a long-term treatment plan due to the uncertainties. The oncologist said we should go step by step, which I understood and agreed.

 

Since then my father has completed two chemo cycles with Folfox6 plus Avastin, 80% of standard dose considering his poor liver function. Good news is he responded well. After the first chemo, CEA decreased to 178 on July 30, and after the second it further decreased to 156 on August 21 and then 112 on August 25. CA 19-9 was down to 130 also on August 25. He will complete the third chemo tomorrow and expect to have the fourth from September 9-11. In addition, he could pass more wind and stools over the past 2 weeks, which might be signs that tumors have started to shrink.

 

His oncologist recently treated a patient that he said was in very similar situation as my father. After 4 months of chemo, all tumors disappeared and surgeon said no need for surgery. So the oncologist said, if everything goes well, he may choose to continue with chemo for my father and hopes he could achieve the same good outcome.

 

However, I also have some different advice from a family friend who is an oncologist in a different city. He said, once the chemo shrinks the tumors to a certain size and there is an opportunity to remove them by surgery, especially those in the liver, we must seize the opportunity and do it. Otherwise, there are risks that the chemo will become ineffective and the tumors grow again, then we will lose the opportunity of surgery.

 

I have read many posts on this forum. I am deeply inspired by many of you who have fought the tough battels and I benefit from your personal experience and perspectives. I will have my father do a CT scan after the fourth chemo in mid-September. Obviously, findings from the CT scan will help us decide next steps. But I’d like to be a bit more proactive and would like to seek some suggestions from anyone who might have similar experience. What will help us to make a decision to go with surgery or continue with chemo? Honestly, surgery after chemo was previously the “best case scenario” I could have thought of for my father’s case. But I know he is afraid of surgery so I am now wondering if chemo could be the solution leading to complete remission…also I know even after surgery he needs to have follow-up chemo, so if we could avoid that, why not...

 

I know this is a lot of info and a question without easy answer. Thank you in advance for reading and for sharing your advice!!

 

Eric

 

 

abrub

Is your family friend a colorectal oncologist

or is he more of a generalist?  (Most outside of major cancer centers are more generalists - hematology oncologists.)  If you haven't sought the opinion of a colorectal specialist, then that's what I would recommend.

On a side note, I had a close family friend, an MD with a super reputation push for me to be treated by a gyn oncologist because my cancer was found on my ovary.  However, my cancer was a colorectal tumor, and would not have responded to any treatments a gyn oncologist would have had for me.  I respect the family friend, but in my case his recommendation didn't fit.  He later agreed that a gyn oncologist would have been the wrong move.  Friends are wonderful, but you want experts here.

NHMike

Many may be reluctant to

Many may be reluctant to offer advice because each case is different and we certainly aren't medical professionals.

I'm stage 3B and there's a big mass in there and the plan is to have it removed 6-8 weeks after chemo and radiation (and I'll tell you that the radiation is most unpleasant and a literal pain in the butt). The surgeon told me that she'll remove the mass and that I'll either have a temporary or permanent bag. So I don't have a lot of choice in the matter. Now if by some miracle, the tumor is gone, there's no cancer cells anywhere to be found, no lymph nodes to be found, no muscle invasion, etc. Then maybe surgery won't be necessary. But I'd guess the odds of that are 0% based on what I've felt from the tumor and the information from the scans that I've seen. And so after surgery, there's more chemo which I plan to go through.  That chemo will include Oxi which I am not looking forward to. I do seem to be able to tolerate 5FU quite well but I'm reading lots about stuff that the Oxi does to you on other threads. So I'm going to follow the recommendations of my Oncologist and Surgeon (I got second opinions from an Oncologist and Radiologist at one of the best cancer hospitals in the country).

I have a coworker that developed Non-Small-Cell Lung Cancer Spring 2016. He had genetic testing done on the tumor (it was inoperable) and they determined that it could be treated with a targeted therapy and he came back to work late summer. The targeted therapy shrunk the tumor up to a certain level and then it stabilized but he functioned fairly well afterwards. Then a year later, the cancer mutated and it started growing again. They determined that the second cancer could be treated by a different targeted therapy (it also treated the first cancer too). So he's taking the second drug and the tumor shrank but only to a certain level and it's staying around the same size. But he's back to being functional. The folks treaing him know that the first type of cancer he had often mutates to the second within a year so they expected it and it's been around long enough that there's a treatment for it. I do not know whether or not CRC cancers can mutate to forms that don't respond to the usual treatments like Folfox.

What I would recommend is going to see a CRC Oncologist at a top Cancer Hosptital for a second opinion. Examples are MD Anderson in Houston (ack, a lot of their facilities are closed right now due to the storm), Memorial Sloan-Kettering in New York, Mayo Clinic in Minnesota, Dana Farber Cancer Institute in Boston, John Hopkins in Baltimore, Cleveland Clinic, University of Pennsylvania and others.

SummerLight

abrub said:

Is your family friend a colorectal oncologist

or is he more of a generalist?  (Most outside of major cancer centers are more generalists - hematology oncologists.)  If you haven't sought the opinion of a colorectal specialist, then that's what I would recommend.

On a side note, I had a close family friend, an MD with a super reputation push for me to be treated by a gyn oncologist because my cancer was found on my ovary.  However, my cancer was a colorectal tumor, and would not have responded to any treatments a gyn oncologist would have had for me.  I respect the family friend, but in my case his recommendation didn't fit.  He later agreed that a gyn oncologist would have been the wrong move.  Friends are wonderful, but you want experts here.

Thank you abrub! Yes, my

Thank you abrub! Yes, my family friend is more of a generalist. Will go to a colorectal specialist for a second opinion.

SummerLight

NHMike said:

Many may be reluctant to

Many may be reluctant to offer advice because each case is different and we certainly aren't medical professionals.

I'm stage 3B and there's a big mass in there and the plan is to have it removed 6-8 weeks after chemo and radiation (and I'll tell you that the radiation is most unpleasant and a literal pain in the butt). The surgeon told me that she'll remove the mass and that I'll either have a temporary or permanent bag. So I don't have a lot of choice in the matter. Now if by some miracle, the tumor is gone, there's no cancer cells anywhere to be found, no lymph nodes to be found, no muscle invasion, etc. Then maybe surgery won't be necessary. But I'd guess the odds of that are 0% based on what I've felt from the tumor and the information from the scans that I've seen. And so after surgery, there's more chemo which I plan to go through.  That chemo will include Oxi which I am not looking forward to. I do seem to be able to tolerate 5FU quite well but I'm reading lots about stuff that the Oxi does to you on other threads. So I'm going to follow the recommendations of my Oncologist and Surgeon (I got second opinions from an Oncologist and Radiologist at one of the best cancer hospitals in the country).

I have a coworker that developed Non-Small-Cell Lung Cancer Spring 2016. He had genetic testing done on the tumor (it was inoperable) and they determined that it could be treated with a targeted therapy and he came back to work late summer. The targeted therapy shrunk the tumor up to a certain level and then it stabilized but he functioned fairly well afterwards. Then a year later, the cancer mutated and it started growing again. They determined that the second cancer could be treated by a different targeted therapy (it also treated the first cancer too). So he's taking the second drug and the tumor shrank but only to a certain level and it's staying around the same size. But he's back to being functional. The folks treaing him know that the first type of cancer he had often mutates to the second within a year so they expected it and it's been around long enough that there's a treatment for it. I do not know whether or not CRC cancers can mutate to forms that don't respond to the usual treatments like Folfox.

What I would recommend is going to see a CRC Oncologist at a top Cancer Hosptital for a second opinion. Examples are MD Anderson in Houston (ack, a lot of their facilities are closed right now due to the storm), Memorial Sloan-Kettering in New York, Mayo Clinic in Minnesota, Dana Farber Cancer Institute in Boston, John Hopkins in Baltimore, Cleveland Clinic, University of Pennsylvania and others.

Hi NHMike, thank you for

Hi NHMike, thank you for sharing your perspective. I know it is not an easy question and I appreciate your reply.

I know every case is different, but looks like Oxi (it is Oxaliplatin, right?) doesn't cause much trouble for my dad...hope it will be okay for you as well.

Anyway, for my dad, the chemo has been quite effective and side effects not too bad so far. Will keep going and have a scan after the 4th cycle. Will also get a second opinion and decide what to do next then.

Coachjim

LIVER surgeon

Don't go to a colorectal surgeon just because the cancer in the liver is CRC.  You need a liver surgeon.  

Chemo shrinks tumors but they will return in MOST cases when chemo is stopped.  Surgery can be curative, but with so much cancer in so many areas, most surgeons won't operate.  Actually,  many doctors don't 'bother' to remove rectal cancers if the cancer has already spread. They treat with chemo only.  I have a local friend who never had the rectal tumor removed and cancer continues to spread to other areas.  When I spoke with them recently, I asked why it has been in place for 3 years now and 'too low' was the answer. They're at CTCA and never heard of 'Barbie Butt'.  

tanstaafl

mCRC is seldom cured by chemo

mCRC is seldom cured by chemo alone, surgery is almost always necessary for chemo free NED, 5 yrs or a cure.  Aggressive patients are more often able to combine chemo and whittle down sites in 1-3 surgeries.  Often part of these tasks will be most readily done by heavy hitters, at the regional, national or world class level if the disease is normally not considered operable.

The trick is to prepare as a patient, physically-biologically and information wise, and recover well from surgery, quickly.  Then  either return to chemo or the next surgery until the cancer sites are gone.   Too many patients have too long windows between chemo and surgery, like 3-6 weeks before and 3-6 weeks after.  This is due to conservatism of the surgeons, too heavy chemo cycles, Avastin issues not addressed well, and lack of heavy duty, therapeutic nutrition to speed and improve recovery.

A more biologically based approach would vary with the patient details and organs operated on, involving major blood vessels etc.  However IV 5FU chemo during surgery is actually possible and has been done successfully in the literature for the primary CRC surgery.  

Avastin is often the big sticker, witheld 6 weeks away from either side of surgery.  Avastin is an anti VEGF-A drug.  We use IV vitamin C and cimetidine instead, to reduce VEGF-A formed related to  CA19-9 and LDH markers.  Biologically, both vit C and cimetidine can be used even during surgery for improved CRC and surgery results, although this is not well known medically these days.  We've had great results by taking informed control of as much of the situation as possible.  We had cimetidine used by the surgeon,  had chemo used within 12 - 24 hours of surgery, and IV vitamin C within 8 hrs after surgery.  The questions are who can support you and how do you finesse normal medical obstruction in the hospitals and from (sub)"standard medical" advise.

Our surgeons were already using celecoxib for CRC surgeries.

We use IV vitamin C, really potent supplements, celecoxib (Celebrex) and cimetidine on AFP, CEA and CA19-9 producing cancer cells, along with mild daily 5FU chemo.   The comparable patients of our doctors and in the literature died out years ago.

NHMike

tanstaafl said:

mCRC is seldom cured by chemo

mCRC is seldom cured by chemo alone, surgery is almost always necessary for chemo free NED, 5 yrs or a cure.  Aggressive patients are more often able to combine chemo and whittle down sites in 1-3 surgeries.  Often part of these tasks will be most readily done by heavy hitters, at the regional, national or world class level if the disease is normally not considered operable.

The trick is to prepare as a patient, physically-biologically and information wise, and recover well from surgery, quickly.  Then  either return to chemo or the next surgery until the cancer sites are gone.   Too many patients have too long windows between chemo and surgery, like 3-6 weeks before and 3-6 weeks after.  This is due to conservatism of the surgeons, too heavy chemo cycles, Avastin issues not addressed well, and lack of heavy duty, therapeutic nutrition to speed and improve recovery.

A more biologically based approach would vary with the patient details and organs operated on, involving major blood vessels etc.  However IV 5FU chemo during surgery is actually possible and has been done successfully in the literature for the primary CRC surgery.  

Avastin is often the big sticker, witheld 6 weeks away from either side of surgery.  Avastin is an anti VEGF-A drug.  We use IV vitamin C and cimetidine instead, to reduce VEGF-A formed related to  CA19-9 and LDH markers.  Biologically, both vit C and cimetidine can be used even during surgery for improved CRC and surgery results, although this is not well known medically these days.  We've had great results by taking informed control of as much of the situation as possible.  We had cimetidine used by the surgeon,  had chemo used within 12 - 24 hours of surgery, and IV vitamin C within 8 hrs after surgery.  The questions are who can support you and how do you finesse normal medical obstruction in the hospitals and from (sub)"standard medical" advise.

Our surgeons were already using celecoxib for CRC surgeries.

We use IV vitamin C, really potent supplements, celecoxib (Celebrex) and cimetidine on AFP, CEA and CA19-9 producing cancer cells, along with mild daily 5FU chemo.   The comparable patients of our doctors and in the literature died out years ago.

Do you consider 3-6 weeks too

Do you consider 3-6 weeks too long if CRC hasn't metastasized?

tanstaafl

NHMike said:

Do you consider 3-6 weeks too

Do you consider 3-6 weeks too long if CRC hasn't metastasized?

Yes

Yes, why add risk if you can avoid it.  The fact is that you really don't absolutely know about mets' absence or eradicability.  Every patient that recurs is a probable system failure to me. Especially if the CEA and CA19-9 did not drop to low levels in a week or two after surgery, assuming they also are getting the extra high dose nutrients and anti-inflammatories.

Bear in mind, we can fundamentally reduce excess VEGF-A with targeted cimetidine and IV vitamin C and have not even used Avastin in 7 years.

 In Japan, many studies with straight 5FU started at two weeks.  If the patient is in good shape before surgery and recovers well on advanced nutrients that specifcally speed healing with stronger new tissue, one should be able to count by days when to start 5FU. But drs will likely react with shock or derision. 

NHMike

tanstaafl said:

Yes

Yes, why add risk if you can avoid it.  The fact is that you really don't absolutely know about mets' absence or eradicability.  Every patient that recurs is a probable system failure to me. Especially if the CEA and CA19-9 did not drop to low levels in a week or two after surgery, assuming they also are getting the extra high dose nutrients and anti-inflammatories.

Bear in mind, we can fundamentally reduce excess VEGF-A with targeted cimetidine and IV vitamin C and have not even used Avastin in 7 years.

 In Japan, many studies with straight 5FU started at two weeks.  If the patient is in good shape before surgery and recovers well on advanced nutrients that specifcally speed healing with stronger new tissue, one should be able to count by days when to start 5FU. But drs will likely react with shock or derision. 

I sent in a referral request

I sent in a referral request for the MRI (I'm scheduled to be done with chemo and radiation this Friday) to my surgeon's office as she requested one the week after I was done. The doctors that I spoke to at DFCI said that they're finding better results in waiting longer after chemoradiation before surgery. That is, the usualy six weeks is getting pushed out to eight to ten weeks on surgery for CRC. The potential reasons are more time to heal and more time for the radiation and 5FU to do their work. The anecdotal comments that I've seen indicate that your body starts to feel better from the radiation after about two weeks but that the radiation continues to do its work for a while. I don't know how long Xeloda keeps working after you stop taking it but the side-effects on me were minimal after a few days of adjustment. I'm pretty sure that the surgeon will schedule an appointment shortly after the MRI so I can discuss early surgery with her. If the cancer was only in the rectum, though, I would think that the radiation took care of it. If it has spread already, then it has already spread. If it hasn't, then wouldn't it be inert by now? I understand that there can be residual cells hanging around, maybe dead or potentially alive and maybe surgery takes care of those.

SummerLight

Thank you all for the

Thank you all for the additional advice (and discussions)! Now the fourth chemo is scheduled on Sep. 15-17, and a CT-Scan will follow. All these comments are helpful for us when we consider next steps.

tanstaafl

NHMike said:

I sent in a referral request

I sent in a referral request for the MRI (I'm scheduled to be done with chemo and radiation this Friday) to my surgeon's office as she requested one the week after I was done. The doctors that I spoke to at DFCI said that they're finding better results in waiting longer after chemoradiation before surgery. That is, the usualy six weeks is getting pushed out to eight to ten weeks on surgery for CRC. The potential reasons are more time to heal and more time for the radiation and 5FU to do their work. The anecdotal comments that I've seen indicate that your body starts to feel better from the radiation after about two weeks but that the radiation continues to do its work for a while. I don't know how long Xeloda keeps working after you stop taking it but the side-effects on me were minimal after a few days of adjustment. I'm pretty sure that the surgeon will schedule an appointment shortly after the MRI so I can discuss early surgery with her. If the cancer was only in the rectum, though, I would think that the radiation took care of it. If it has spread already, then it has already spread. If it hasn't, then wouldn't it be inert by now? I understand that there can be residual cells hanging around, maybe dead or potentially alive and maybe surgery takes care of those.

timing

My comments are centered on best timing for metastatic colon cancer without radiation with resistant small residuals leftover perhaps more embedded (there was), our case, with daily immunochemo.  

In the literature that I used, for Japan, they don't (didn't?) use radiation for rectal cancer but rather used a more precise form of surgery.  Then they treated everybody, colon or rectal, at two weeks.  

We can also treat to some degree without the 5FU as an immune/mild adjunct only option, but I have to admit 5FU does a lot of the heavy lift.  For a lot of the curatively resected patients, the wait time may be less important because chemo intensity to burn out the remaining cells/sites below a certain development is more important than longer treatment time or constant exposure.  

Without neoadjuvant chemo/radiation and with good blood testing, a lot of the metastatic patients that weren't curatively resected with only stray cellls leftover, are clearly identifiable at 1-2 weeks after surgery (hence my focus on colon cancer pts).  Some part of these metastatic patients are the ones that probably benefit most from tight followup on (immuno)chemo.

The chemo my wife takes UFT, which largely stops working in about 12 hours and is largely gone from circulation in 24 hours, although it lingers and binds in tumor tissue longer.  For xeloda figure about twice as long.  We overcome the wound healing issue on supernutrition before and after surgery, and avoiding complications.  One, she wouldn't restart chemo with an obvious complication and the supernutrition/IV vitamin C patients can avoid a lot of common complications.