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Hi - I realize this is a long post and hope it reaches a helpful audience that would be so kind as to provide as much helpful response, advice, recommendations and resources to pursue as possible.
My mother was diagnosed with stage 3b colon cancer about 5 years ago. Since then she's had a total colectomy to remove the first tumor plus some lymph nodes, plus 6 months of Chemo (folfox). For her last month of treatment, the dosage was scaled back for fear of doing long-term damage. The subsequent few quarters after her surgery, things looked good. CEA numbers were in the low 1.x range and fairly consistent and stable. She regained her strength and weight. I'd say about 1.5 years total, from the time after her surgery to the time she was getting chemo and after that, things were looking good. Then I started to get concerned as I saw her CEA ticking upwards every quarter for the next 1.5 years. It would go from 1.x to 2.x sometimes by 0.2, 0.4, but sometimes by whole point jumps. It would never tick downwards. The oncologist felt we didn't have enough trending data and since it had yet to exceed her warning threshold of 5.0 CEA, we just kept monitoring quarter by quarter her blood test results and 6-month CT scan results. Finally, we reached a quarter when she got a CEA of 6.1 and the oncologist pulled in the CT scan schedule and ordered one for her immediately. The scan confirmed there was a mass in her abdominal region.
So this past June 2018 she had another surgery in her abdominal region to remove another tumor (recurrence). It was said to be in the same general area as the first occurrence, around some tissue but not really touching any organs. The surgeon was said to have removed the tumor successfully and with clean margins. The first surgery was laparoscopic, as the surgeon deemed it less invasive. But my mother's second surgery, due to the recurrence being in the same general location in the abdominal region, I wondered if that was the best call and whether it impacted his ability to get it completely out with clean margins. It took a couple of weeks for my mother to recover and she was in the hospital for about 5 days. She was very close to needing a blood transfusion which we wanted to avoid because it's supposed to be better for her ability to fight cancer if she doesn't get one, we were told. This second surgery this past June seemed simpler. The surgeon made an incision through her abdominal region and the surgery went much more quickly.. probably a total of an hour or hour and a half or so. Interestingly, my mother wasn't able to recover quicker from this surgery, and needed about 4-5 days of hospital stay followed by another 10 days or so of recovery out of the hospital. Her first surgery was at around age 65 and second one at age 70. Maybe it gets harder to recover surgeries with age.
Shortly following her surgery this past June, thru follow up CEA tests and CT scan, it seemed her CEA didn't drop to the low 1.x I expected after a successful surgery removing the only identified tumor. I think her reading was in the 2.x or 3.x range. We've since had a second CEA test and a PET scan. Pet scan confirms a tumor in her pelvic region. Her surgeon used a scope and looked in her intestinal area and it looked clean. The oncologist requested this check to determine if the cancer may have spread from there or if it was metastatic. This seems to confirm it is metastatic. The oncologist is to go over her recent CEA result at our next meeting next Friday, but I guess the result doesn't matter now since we got the PET results already confirming a tumor.
The oncologist doesn't believe going back on chemo would be effective and that perhaps the cancer became resistant to it since not all cells may have been killed by the 6 months of chemo she got after her first surgery. Plus, it appears that for "peritoneal mets", which this may be?, traditional chemo may not be as effective. The only good news from her oncologist last time we met was that she said, God forbid, if it came down to it, my mother is one of the 15% of qualified candidates for immunotherapy. What initial googling on peritoneal mets and immunotherapy seemed to suggest it could be effective.
Short of that I don't know what options there are? HIPEC?
It appears that the prognosis and 5-year survival rate for those in stage iv with a cancer in the pelvic region is poor.
My mother is on Kaiser Senior Advantage (it's similar to medi-Cal but has some added Kaiser advantages). This is a low-income program. She is limited to Kaiser doctors and oncologists if she wants a second opinion. I tried calling Sutter where I looked up some oncologists with great ratings to see if they could provide a 2nd opinion if we paid out of pocket. I was informed that they cannot see her because she's under Kaiser and a low income program, and if she or someone else paid for her 2nd opinion it could jeopardize her coverage eligibility. I looked into it and it appears that the only way to get an outside 2nd opinion is if you've exhausted 2nd and 3rd opinions at Kaiser and win an appeal to get an outside opinion. Also, I can't just have her get the help of an excellent specialist elsewhere. The only way I can clear these obstacles is to have her removed from Kaiser Senior Advantage and back on Medi-Cal, then she can enroll with Sutter or some other provider, where she can have easier access to outside 2nd opinions and colon cancer/peritoneal mets/pelvic region cancer specialists. Then, if she wishes to get back on with Kaiser, she would be able to do so. This is kind of risky, as it's based on information a phone representative gave me and I'm worried about jeopardizing her coverage. Kaiser Senior Advantage covers the bulk of her costs for operations, hospital stays, chemo, etc. She really only pays a few bucks at most for any prescription drugs. And if we get stuck with Sutter after switching just to get an outside 2nd opinion and access to consult their highly rated specialists, it may mean potential significant out of pocket costs compared to Kaiser (not confirmed yet, but a concern).
Short of the above strategy, we can only seek a 2nd or 3rd opinion of oncologists at Kaiser. I'd prefer avoiding choosing one from the same hospital location, due to greater potential for conflict of interest and greater likelihood that they may have some policy of not contradicting each other. I am concerned about that even seeking an oncologist at a different Kaiser location for a 2nd opinion, but it seems like the better option.
Her oncologist doesn't believe that going back on chemo would be an effective strategy since she said the first round clearly didn't kill off all of the cancer cells and maybe they became resistant.
Her surgeon said another surgery to remove the current tumor in her pelvic region (metastatic cancer) is something the weekly board members who get together to discuss her case (including her surgeon and oncologist) can discuss as a possibility, but he's concerned my mother would not be able to handle a 3rd surgery.. especially since she just had one in her abdominal region 4-5 months ago.
We thought this 2nd surgery which removed the tumor successfully just 4-5 months ago would buy her more time, like the 1st surgery did. But the 1st surgery was followed up by 6 months of chemo which did appear to buy her more time. But we didn't expect a tumor to appear so relatively soon (4-5 months) after her 2nd surgery...
I want to help my mother make the best possible choices and seek the right experts to give her the best recommendations possible to give her a fighting chance at extending her life while not harming her quality of life.
Although I try to give the benefit of the doubt, I sometimes wonder based on how busy her surgeon and oncologist are (her oncologist works there part-time and does some research part-time) whether we are getting the best care for my mother and the best choices are being made. Or if she deserves better and should seek out better to give her a fighting chance to extend her life.
I'm hoping some people (even/especially an oncologist or experienced doctor with some valuable input) with good experience with the above could please share their advice, recommendations, experiences and leads to resources to help me try to do the best I can by my mother in this, her greatest time of need.. She's only 70 and it is my hope and wish that she could see 80, to continue to enjoy her children and grand children for a while longer.
I thank you in advance for your kindness and taking time to respond with what could be information and knowledge sharing that could make a difference. As you can imagine, our family is going through a lot of different emotions at this time. I don't want to be overly focused on my own feelings and want to make sure I'm attentive to my mom's feelings right now and her needs. And I feel that one of the things I should do is try to reach out and get as much wise counsel as I can in order to do everything I can to make sure we make the best choices possible out of what's available and pursue them, to give her the best chance of extending her life.
If you need any more information or if you feel more comfortable communication through private messages, please feel free to contact me through private messaging.
I know this is a long posting. I was felt that some context and background could be helpful.
One important question....what does your mother want? You are doing the talking and the asking from your point of view. If memory serves me correctly this sad situation sounds familiar, as if these questions have been asked before. At some point Monday morning quarterbacking what was done previously or second guessing all of it isn't helping, and may actually be adding to the confusion/anxiety. No one can change past choices in surgery/treatment. There is never going to be an absolute guaranteed outcome.
IMHO in order to be more helpful I think she should be in this conversation; how does she see all this for herself? Maybe her view about what should or should not come next isn't the same as yours. She may also have different visions for the future than you do. What should be done is what she wants, regardless if it makes the most medical/technical sense. This may be the time her voice matters the most.
Last edited by Parnassia; 11-09-2018 at 07:35 PM..
One important question....what does your mother want? You are doing the talking and the asking from your point of view. If memory serves me correctly this sad situation sounds familiar, as if these questions have been asked before. At some point Monday morning quarterbacking what was done previously or second guessing all of it isn't helping, and may actually be adding to the confusion/anxiety. No one can change past choices in surgery/treatment. There is never going to be an absolute guaranteed outcome.
IMHO in order to be more helpful I think she should be in this conversation; how does she see all this for herself? Maybe her view about what should or should not come next isn't the same as yours. She may also have different visions for the future than you do. What should be done is what she wants, regardless if it makes the most medical/technical sense. This may be the time her voice matters the most.
OP another thought. A lot of the potential courses of action may be overwhelming for your mother. She may not even want to dig into it to the same degree you do, but she hasn't said so in the heat of information gathering. One aspect I didn't see described in your OP was whether she has had the opportunity to work with a counselor/patient advocate to help her clarify what she actually does want (she could be struggling with meeting everyone else's wishes in addition to her own). She may be trying to do what's best for everyone but herself. I'm sure no one wants her to get lost in all the details.
It's a tough situation for all of you. I hope whatever decision your family makes gives everyone some peace at least.
I personally would trust her oncologist. Two of my family members went to M.D. Anderson for second opinions on their cancer treatment, and both were told that the treatment they were receiving was identical to what they would receive at Anderson. Best wishes to you and your family.
Hi - I realize this is a long post and hope it reaches a helpful audience that would be so kind as to provide as much helpful response, advice, recommendations and resources to pursue as possible.
The only good news from her oncologist last time we met was that she said, God forbid, if it came down to it, my mother is one of the 15% of qualified candidates for immunotherapy. What initial googling on peritoneal mets and immunotherapy seemed to suggest it could be effective.
I am answering only to the above part of your post on immunotherapy. I can speak about it since I've been on an immuno - Rubraca - for ovarian cancer for 14 months now. I too was one of a small percent that could be a candidate for it.
It's been a wonderful experience versus the chemo infusion therapies I'd had.
My disease was diagnosed at stage 3 in November of 2014 when I was 60. I had radical surgery to remove any organ possible. The cancer is always going to be present since it was already in my peritoneal area.
Chemo was harsh, debilitating and came with the usual after effects. But it kept the spread away for 2.5 years.
I don't understand why you used the phrase "God forbid" about immunotherapy ...? It has given me a much better life than the chemo treatments allowed. It is very expensive however without the right insurance unfortunately.
Hi - I realize this is a long post and hope it reaches a helpful audience that would be so kind as to provide as much helpful response, advice, recommendations and resources to pursue as possible.
My mother was diagnosed with stage 3b colon cancer about 5 years ago. Since then she's had a total colectomy to remove the first tumor plus some lymph nodes, plus 6 months of Chemo (folfox). For her last month of treatment, the dosage was scaled back for fear of doing long-term damage. The subsequent few quarters after her surgery, things looked good. CEA numbers were in the low 1.x range and fairly consistent and stable. She regained her strength and weight. I'd say about 1.5 years total, from the time after her surgery to the time she was getting chemo and after that, things were looking good. Then I started to get concerned as I saw her CEA ticking upwards every quarter for the next 1.5 years. It would go from 1.x to 2.x sometimes by 0.2, 0.4, but sometimes by whole point jumps. It would never tick downwards. The oncologist felt we didn't have enough trending data and since it had yet to exceed her warning threshold of 5.0 CEA, we just kept monitoring quarter by quarter her blood test results and 6-month CT scan results. Finally, we reached a quarter when she got a CEA of 6.1 and the oncologist pulled in the CT scan schedule and ordered one for her immediately. The scan confirmed there was a mass in her abdominal region.
So this past June 2018 she had another surgery in her abdominal region to remove another tumor (recurrence). It was said to be in the same general area as the first occurrence, around some tissue but not really touching any organs. The surgeon was said to have removed the tumor successfully and with clean margins. The first surgery was laparoscopic, as the surgeon deemed it less invasive. But my mother's second surgery, due to the recurrence being in the same general location in the abdominal region, I wondered if that was the best call and whether it impacted his ability to get it completely out with clean margins. It took a couple of weeks for my mother to recover and she was in the hospital for about 5 days. She was very close to needing a blood transfusion which we wanted to avoid because it's supposed to be better for her ability to fight cancer if she doesn't get one, we were told. This second surgery this past June seemed simpler. The surgeon made an incision through her abdominal region and the surgery went much more quickly.. probably a total of an hour or hour and a half or so. Interestingly, my mother wasn't able to recover quicker from this surgery, and needed about 4-5 days of hospital stay followed by another 10 days or so of recovery out of the hospital. Her first surgery was at around age 65 and second one at age 70. Maybe it gets harder to recover surgeries with age.
Shortly following her surgery this past June, thru follow up CEA tests and CT scan, it seemed her CEA didn't drop to the low 1.x I expected after a successful surgery removing the only identified tumor. I think her reading was in the 2.x or 3.x range. We've since had a second CEA test and a PET scan. Pet scan confirms a tumor in her pelvic region. Her surgeon used a scope and looked in her intestinal area and it looked clean. The oncologist requested this check to determine if the cancer may have spread from there or if it was metastatic. This seems to confirm it is metastatic. The oncologist is to go over her recent CEA result at our next meeting next Friday, but I guess the result doesn't matter now since we got the PET results already confirming a tumor.
The oncologist doesn't believe going back on chemo would be effective and that perhaps the cancer became resistant to it since not all cells may have been killed by the 6 months of chemo she got after her first surgery. Plus, it appears that for "peritoneal mets", which this may be?, traditional chemo may not be as effective. The only good news from her oncologist last time we met was that she said, God forbid, if it came down to it, my mother is one of the 15% of qualified candidates for immunotherapy. What initial googling on peritoneal mets and immunotherapy seemed to suggest it could be effective.
Short of that I don't know what options there are? HIPEC?
It appears that the prognosis and 5-year survival rate for those in stage iv with a cancer in the pelvic region is poor.
My mother is on Kaiser Senior Advantage (it's similar to medi-Cal but has some added Kaiser advantages). This is a low-income program. She is limited to Kaiser doctors and oncologists if she wants a second opinion. I tried calling Sutter where I looked up some oncologists with great ratings to see if they could provide a 2nd opinion if we paid out of pocket. I was informed that they cannot see her because she's under Kaiser and a low income program, and if she or someone else paid for her 2nd opinion it could jeopardize her coverage eligibility. I looked into it and it appears that the only way to get an outside 2nd opinion is if you've exhausted 2nd and 3rd opinions at Kaiser and win an appeal to get an outside opinion. Also, I can't just have her get the help of an excellent specialist elsewhere. The only way I can clear these obstacles is to have her removed from Kaiser Senior Advantage and back on Medi-Cal, then she can enroll with Sutter or some other provider, where she can have easier access to outside 2nd opinions and colon cancer/peritoneal mets/pelvic region cancer specialists. Then, if she wishes to get back on with Kaiser, she would be able to do so. This is kind of risky, as it's based on information a phone representative gave me and I'm worried about jeopardizing her coverage. Kaiser Senior Advantage covers the bulk of her costs for operations, hospital stays, chemo, etc. She really only pays a few bucks at most for any prescription drugs. And if we get stuck with Sutter after switching just to get an outside 2nd opinion and access to consult their highly rated specialists, it may mean potential significant out of pocket costs compared to Kaiser (not confirmed yet, but a concern).
Short of the above strategy, we can only seek a 2nd or 3rd opinion of oncologists at Kaiser. I'd prefer avoiding choosing one from the same hospital location, due to greater potential for conflict of interest and greater likelihood that they may have some policy of not contradicting each other. I am concerned about that even seeking an oncologist at a different Kaiser location for a 2nd opinion, but it seems like the better option.
Her oncologist doesn't believe that going back on chemo would be an effective strategy since she said the first round clearly didn't kill off all of the cancer cells and maybe they became resistant.
Her surgeon said another surgery to remove the current tumor in her pelvic region (metastatic cancer) is something the weekly board members who get together to discuss her case (including her surgeon and oncologist) can discuss as a possibility, but he's concerned my mother would not be able to handle a 3rd surgery.. especially since she just had one in her abdominal region 4-5 months ago.
We thought this 2nd surgery which removed the tumor successfully just 4-5 months ago would buy her more time, like the 1st surgery did. But the 1st surgery was followed up by 6 months of chemo which did appear to buy her more time. But we didn't expect a tumor to appear so relatively soon (4-5 months) after her 2nd surgery...
I want to help my mother make the best possible choices and seek the right experts to give her the best recommendations possible to give her a fighting chance at extending her life while not harming her quality of life.
Although I try to give the benefit of the doubt, I sometimes wonder based on how busy her surgeon and oncologist are (her oncologist works there part-time and does some research part-time) whether we are getting the best care for my mother and the best choices are being made. Or if she deserves better and should seek out better to give her a fighting chance to extend her life.
I'm hoping some people (even/especially an oncologist or experienced doctor with some valuable input) with good experience with the above could please share their advice, recommendations, experiences and leads to resources to help me try to do the best I can by my mother in this, her greatest time of need.. She's only 70 and it is my hope and wish that she could see 80, to continue to enjoy her children and grand children for a while longer.
I thank you in advance for your kindness and taking time to respond with what could be information and knowledge sharing that could make a difference. As you can imagine, our family is going through a lot of different emotions at this time. I don't want to be overly focused on my own feelings and want to make sure I'm attentive to my mom's feelings right now and her needs. And I feel that one of the things I should do is try to reach out and get as much wise counsel as I can in order to do everything I can to make sure we make the best choices possible out of what's available and pursue them, to give her the best chance of extending her life.
If you need any more information or if you feel more comfortable communication through private messages, please feel free to contact me through private messaging.
I know this is a long posting. I was felt that some context and background could be helpful.
A little background. My father died about nine years ago of colon cancer. He was originally staged at 3c. However, after four years he went to a stage 4 and died shortly after his eighty-fourth birthday.
I realize your mother is only seventy and ideally you would like to keep her around much longer.
With a stage 4 diagnosis though a long survival rate is probably not in the cards. I think you need to have a very long talk with your mother. I think she needs to understand that the odds of her surviving very long are not good. Also, the last stages of chemotherapy can be rough. They were on my father. Yet, even at his age he chose to do it anyway--and I think he would have made the same choice over again if it were presented to him today. However, people are different and your mother's answer may surprise you. She may choose to stop treatment and request hospice. If she does this, I suggest you allow her to do so despite your desire to keep her around as long as you can.
I don't know that getting treatment somewhere else would be very helpful. As one poster has already said, the treatment and medications are likely to be the same. Although, there may be some dispute about how much treatment she should be getting. I doubt it would be worthwhile to take her to a major cancer center.
I will wish you and your mother my best.
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