How to receive the best cancer care
March 14, 2018 5:13 AM Subscribe
My young and extremely healthy (36) year old sister was diagnosed with stage IV colon cancer last year. Initially the doctors told her it was inoperable and she began intense chemotherapy. Lo and behold six months later she was deemed elligible for an operation...
Scans showed only the tumors in her colon and that the lymph nodes that were affected appeared fine. She underwent a huge surgery to remove the colon stuff and the doctors declared her cancer free. However, it appears that since stopping the chemo metastases have formed on her liver, and two other places. She is slated to go back onto the chemo that worked well, at lower intensity. It seems in retrospect that going for the surgery and stopping chemo in preparation was a huge mistake.
I guess my question is - is there some sort of guide or counseling to these types of medical decisions that people can have access to? Also, if anyone has any kind of similar experience they'd like to share about the decisions their family made in this situation and how they turned out, I'd enjoy hearing about them. If the chemo still works they are giving her 1-2 years and when things get desperate they will attempt clinical trials. I am wondering if she'd be better off at a cancer center like Memorial Sloan Kettering or some more integrative care like Mayo Clinic. She has two small children and a couple of years doesn't seem like enough. Experiences with either organization compared to local (affiliated with reputable hospital) oncologist very welcome.
Thanks. Bonus points if there's anything me and my other sister should be doing besides the colonoscopies (which we've done). This is not genetic, apparently. Do people go get PET scanned just for the hell of it? Besides being primarily devastated we are both secondarily scared to death.
Reply here or share privately at freakincancer@gmail.com
Scans showed only the tumors in her colon and that the lymph nodes that were affected appeared fine. She underwent a huge surgery to remove the colon stuff and the doctors declared her cancer free. However, it appears that since stopping the chemo metastases have formed on her liver, and two other places. She is slated to go back onto the chemo that worked well, at lower intensity. It seems in retrospect that going for the surgery and stopping chemo in preparation was a huge mistake.
I guess my question is - is there some sort of guide or counseling to these types of medical decisions that people can have access to? Also, if anyone has any kind of similar experience they'd like to share about the decisions their family made in this situation and how they turned out, I'd enjoy hearing about them. If the chemo still works they are giving her 1-2 years and when things get desperate they will attempt clinical trials. I am wondering if she'd be better off at a cancer center like Memorial Sloan Kettering or some more integrative care like Mayo Clinic. She has two small children and a couple of years doesn't seem like enough. Experiences with either organization compared to local (affiliated with reputable hospital) oncologist very welcome.
Thanks. Bonus points if there's anything me and my other sister should be doing besides the colonoscopies (which we've done). This is not genetic, apparently. Do people go get PET scanned just for the hell of it? Besides being primarily devastated we are both secondarily scared to death.
Reply here or share privately at freakincancer@gmail.com
I'm very sorry to hear about your sister. It's a terrible situation. The recommendation I can make for you from my sister-in-law's experience with stage 4 breast cancer is that I wish we had sat down and really discussed what she wanted in terms of palliative care and end of life things much, much earlier than we did. It's such a difficult conversation, but it really needs to be had.
posted by not that mimi at 5:25 AM on March 14, 2018 [8 favorites]
posted by not that mimi at 5:25 AM on March 14, 2018 [8 favorites]
I'm sorry you're going through this. I have multiple myeloma (bone marrow cancer), which is supposedly not genetic, but my mother died from it.
Decision making is super tough. I'm not sure whether you're just asking about going to a major cancer center or what kind to go to. My HMO keeps me at my local major center, but as soon as the snow is gone for good, I'm planning to go the Block Center for Integrative Cancer Treatment in the Chicago area. This is in addition to the cancer treatment at my local hospital, not instead of it. I have opted to pursue integrative treatment and have worked with a naturopath who specializes in blood cancers and works at cancer hospitals. Oncologists are really good at conventional treatment, but there are a lot of things that can help that tend to go under their radar, like nutritional interventions and supplements. BTW, I have looked up my naturopath's recommendations on PubMed, and every single thing he recommended was backed up by peer-reviewed research. It's just not the sort of stuff oncologists pay attention to.
Online resources with patient forums can be really helpful. I ended up making a decision about a treatment I didn't know was controversial until I began researching online.
As far as you and your other sister go, colon cancer seems to be very connected to diet. The World Health Organization has issued a statement saying that processed meats (bacon, ham, sausage) and red meat are connected to colon cancer. There is also research showing that minimizing processed carbohydrates (white flour, sugar) leads to better outcomes in colon cancer patients. New York Times article on that here.
There are two really excellent scientific, evidence-based books on lifetstyle help with cancer treatment: Anticancer: A New Way of Life and Life Over Cancer: The Block Center Program for Integrative Cancer Treatment. If you have more tolerance for woo, Chris Wark is a long-term colon cancer survivor and runs a website called Chris Beat Cancer. If you're interested in reading about the experience of a woman in your sister's situation (young mother with colon cancer), I liked the book Everything Happens for a Reason: and Other Lies I've Loved.
Finally, Stephen Jay Gould wrote a great piece about how cancer statistics can make the situation seem more dire than it actually is.
Feel free to MeMail me if you have questions.
posted by FencingGal at 7:47 AM on March 14, 2018 [2 favorites]
Decision making is super tough. I'm not sure whether you're just asking about going to a major cancer center or what kind to go to. My HMO keeps me at my local major center, but as soon as the snow is gone for good, I'm planning to go the Block Center for Integrative Cancer Treatment in the Chicago area. This is in addition to the cancer treatment at my local hospital, not instead of it. I have opted to pursue integrative treatment and have worked with a naturopath who specializes in blood cancers and works at cancer hospitals. Oncologists are really good at conventional treatment, but there are a lot of things that can help that tend to go under their radar, like nutritional interventions and supplements. BTW, I have looked up my naturopath's recommendations on PubMed, and every single thing he recommended was backed up by peer-reviewed research. It's just not the sort of stuff oncologists pay attention to.
Online resources with patient forums can be really helpful. I ended up making a decision about a treatment I didn't know was controversial until I began researching online.
As far as you and your other sister go, colon cancer seems to be very connected to diet. The World Health Organization has issued a statement saying that processed meats (bacon, ham, sausage) and red meat are connected to colon cancer. There is also research showing that minimizing processed carbohydrates (white flour, sugar) leads to better outcomes in colon cancer patients. New York Times article on that here.
There are two really excellent scientific, evidence-based books on lifetstyle help with cancer treatment: Anticancer: A New Way of Life and Life Over Cancer: The Block Center Program for Integrative Cancer Treatment. If you have more tolerance for woo, Chris Wark is a long-term colon cancer survivor and runs a website called Chris Beat Cancer. If you're interested in reading about the experience of a woman in your sister's situation (young mother with colon cancer), I liked the book Everything Happens for a Reason: and Other Lies I've Loved.
Finally, Stephen Jay Gould wrote a great piece about how cancer statistics can make the situation seem more dire than it actually is.
Feel free to MeMail me if you have questions.
posted by FencingGal at 7:47 AM on March 14, 2018 [2 favorites]
I am so sorry. My young relative who had pancreatic cancer was a patient at Sloan Kettering and I do think she got a couple of relatively good years with her young kids out of their care. She was involved in at least one clinical trial. I think it’s definitely worth pursuing.
posted by pintapicasso at 7:50 AM on March 14, 2018 [1 favorite]
posted by pintapicasso at 7:50 AM on March 14, 2018 [1 favorite]
Check out Dr. Pam Popper at the Wellness Forum in Ohio
posted by TRUELOTUS at 7:56 AM on March 14, 2018
posted by TRUELOTUS at 7:56 AM on March 14, 2018
If your question is about going to a major cancer center at all, definitely yes if you can manage it. For my kind of cancer, there are statistics showing patients live longer if they go to centers where they treat a lot of people with it, and there are actually statistics showing some specific doctors have patients who live longer. I once read an essay about how for cystic fibrosis, there was a ten year difference in survival between the hospital with the best survival rates and the one with the worst rates. So where you go for treatment can make a big difference. Here, the internet can be your friend.
posted by FencingGal at 9:15 AM on March 14, 2018 [3 favorites]
posted by FencingGal at 9:15 AM on March 14, 2018 [3 favorites]
I am wondering if she'd be better off at a cancer center like Memorial Sloan Kettering or some more integrative care like Mayo Clinic.
The better care you can get to, well, the better care you will receive.
I live in Rhode Island, and happily have driven people up to hospitals around Boston in order to get access to those doctors & facilities. No dings on the hospitals here, and some of my friends are doctors in the area, but in Boston they have literally some of the best doctors in the world.
posted by wenestvedt at 9:22 AM on March 14, 2018 [2 favorites]
The better care you can get to, well, the better care you will receive.
I live in Rhode Island, and happily have driven people up to hospitals around Boston in order to get access to those doctors & facilities. No dings on the hospitals here, and some of my friends are doctors in the area, but in Boston they have literally some of the best doctors in the world.
posted by wenestvedt at 9:22 AM on March 14, 2018 [2 favorites]
Definitely consider going to a major center, if only for a consult. There really are differences in survival rates for a number of cancers.
The one (potential!) drawback that you should be aware of is that the doctors at such places tend to be, understandably, very aggressive in treatment. There may come a point where your sister will have to choose between quality and length of life, but they will rarely put it so directly. Chasing those last few weeks if they are weeks spent constantly in and out of hospital and in absolute misery might not be what she would choose, even with small children, but they may not always be so explicit that that's what she'd be choosing. That's not a reason not to go, especially if your sister remains committed to aggressive treatment to the end, but it's something to keep in mind.
I'm sorry this is happening to your family.
posted by praemunire at 9:23 AM on March 14, 2018 [5 favorites]
The one (potential!) drawback that you should be aware of is that the doctors at such places tend to be, understandably, very aggressive in treatment. There may come a point where your sister will have to choose between quality and length of life, but they will rarely put it so directly. Chasing those last few weeks if they are weeks spent constantly in and out of hospital and in absolute misery might not be what she would choose, even with small children, but they may not always be so explicit that that's what she'd be choosing. That's not a reason not to go, especially if your sister remains committed to aggressive treatment to the end, but it's something to keep in mind.
I'm sorry this is happening to your family.
posted by praemunire at 9:23 AM on March 14, 2018 [5 favorites]
(Also, I am sorry you all are going through this. Major illnesses have an impact on the whole extended family. Take care of each other.)
posted by wenestvedt at 9:24 AM on March 14, 2018
posted by wenestvedt at 9:24 AM on March 14, 2018
Are you familiar with the podcast Everything Happens? The host was diagnosed last year with stage IV colon cancer and the show is amazing. It may not clinically help your sister but I bet both of you would find helpful words by listening to it.
posted by a22lamia at 9:49 AM on March 14, 2018
posted by a22lamia at 9:49 AM on March 14, 2018
I haven't dealt with colon cancer but my ex-husband had ulcerative colitis and a number of colorectal surgeries and associated complications.
Yes your sister is best off at a major medical centre for any surgical procedure and treatment, if she wants aggressive care. You want surgeons doing this by volume and doctors on top of the latest research. Older treatments can sometimes best be described as barbaric.
And yes, please have very detailed conversations about quality of life and what is desired. My observation sitting at the GI ward over time is that some of these interventions are absolutely miserable. Get a position on things such as tube feeding or TPN.
My ex-husband's lengthy illness destroyed our marriage and stunted my daughter's emotional growth. Now that we've been separated for some time, I have been able to focus my attention on my daughter which has led to her having more after school activities, more 1:1 time, and greatly improved self-confidence in her.
Treatment decisions are so highly personal. There is no book to navigate the choices. Based on my experience with my ex-husband, I would decline any and all aggressive treatments for colorectal cancer for myself, take chemo only if it is palliative, and prepare for my own death. I want my daughter focusing on her future, not nursing me. That might be the wrong answer for your sister, but it's a valid line of thinking based on what I value.
posted by crazycanuck at 12:05 PM on March 14, 2018 [2 favorites]
Yes your sister is best off at a major medical centre for any surgical procedure and treatment, if she wants aggressive care. You want surgeons doing this by volume and doctors on top of the latest research. Older treatments can sometimes best be described as barbaric.
And yes, please have very detailed conversations about quality of life and what is desired. My observation sitting at the GI ward over time is that some of these interventions are absolutely miserable. Get a position on things such as tube feeding or TPN.
My ex-husband's lengthy illness destroyed our marriage and stunted my daughter's emotional growth. Now that we've been separated for some time, I have been able to focus my attention on my daughter which has led to her having more after school activities, more 1:1 time, and greatly improved self-confidence in her.
Treatment decisions are so highly personal. There is no book to navigate the choices. Based on my experience with my ex-husband, I would decline any and all aggressive treatments for colorectal cancer for myself, take chemo only if it is palliative, and prepare for my own death. I want my daughter focusing on her future, not nursing me. That might be the wrong answer for your sister, but it's a valid line of thinking based on what I value.
posted by crazycanuck at 12:05 PM on March 14, 2018 [2 favorites]
Your sister should consider clinical trials waaaay before things appear hopeless. There are vanishingly few trials that are open to hopelessly ill patients. On the other hand, patients who are still functioning well have many more options. She will likely not have access to any trials unless she is seen at an academic cancer center.
I'm sorry to say that most community hospitals don't have a commitment to clinical research. It's expensive to maintain the staff and infrastructure to support clinical trials, and it's really only accessible to patients through academic cancer centers, universities that have medical schools and do a lot of NIH or NCI trials - that's National Institutes of Health and National Cancer Institute. Travel can be inconvenient, so many of them offer to coordinate with local oncologists as much as they can. Letting her oncologist know that she would consider a trial might have him or her jumping with joy and calling local cancer institutes; they know how critical clinical trials are to moving the science of cancer treatment forward.
Participants in clinical trials are not always the happy recipients of cures, but sometimes they are, if they are lucky enough to participate in successful cutting-edge therapies. A few years ago it was unheard of to survive malignant melanoma, but because patients agreed to try new therapies in clinical trials there is now a nearly-miraculous cure. Unfortunately, trials don't always turn out that successfully.
I was a Research Coordinator at an academic medical center, and found that participation was important, sometimes really, really important to many patients. They wanted to do whatever they could to move the science forward. Your sister might find real meaning in this, whatever the medical outcome.
For starters I'd suggest searching for her particular type of cancer on ClinicalTrials.gov. Every trial that is supported by any federal money is included, and pharmaceutical trials are required to allow that they are listed as well. You will see if trials are enrolling, where enrolling sites are, and the contact information of the research coordinator, usually a nurse. Your sister can see which sites are close to her and call to talk to the coordinator. It's nice to have a nurse to talk to because it is a very human, as opposed to medical interaction, and their job is to to help patients enroll. Sometimes travel expenses can be defrayed if that is an issue.
Be ware that trial inclusion and exclusion criteria are often unforgiving of even minor deviations. If tumors are not the precise size specified, for example, the patient may not be eligible despite meeting other requirements. Keep calling, keep checking with ClinicalTrial.gov. Call sites that are not quite so convenient if enrollment closes at one site but is open at the other. Make yourself known to a few research coordinators, so they will call you if something becomes available. A lot of this is timing and persistence. Good luck to you and your sister!
posted by citygirl at 10:03 PM on March 14, 2018 [2 favorites]
I'm sorry to say that most community hospitals don't have a commitment to clinical research. It's expensive to maintain the staff and infrastructure to support clinical trials, and it's really only accessible to patients through academic cancer centers, universities that have medical schools and do a lot of NIH or NCI trials - that's National Institutes of Health and National Cancer Institute. Travel can be inconvenient, so many of them offer to coordinate with local oncologists as much as they can. Letting her oncologist know that she would consider a trial might have him or her jumping with joy and calling local cancer institutes; they know how critical clinical trials are to moving the science of cancer treatment forward.
Participants in clinical trials are not always the happy recipients of cures, but sometimes they are, if they are lucky enough to participate in successful cutting-edge therapies. A few years ago it was unheard of to survive malignant melanoma, but because patients agreed to try new therapies in clinical trials there is now a nearly-miraculous cure. Unfortunately, trials don't always turn out that successfully.
I was a Research Coordinator at an academic medical center, and found that participation was important, sometimes really, really important to many patients. They wanted to do whatever they could to move the science forward. Your sister might find real meaning in this, whatever the medical outcome.
For starters I'd suggest searching for her particular type of cancer on ClinicalTrials.gov. Every trial that is supported by any federal money is included, and pharmaceutical trials are required to allow that they are listed as well. You will see if trials are enrolling, where enrolling sites are, and the contact information of the research coordinator, usually a nurse. Your sister can see which sites are close to her and call to talk to the coordinator. It's nice to have a nurse to talk to because it is a very human, as opposed to medical interaction, and their job is to to help patients enroll. Sometimes travel expenses can be defrayed if that is an issue.
Be ware that trial inclusion and exclusion criteria are often unforgiving of even minor deviations. If tumors are not the precise size specified, for example, the patient may not be eligible despite meeting other requirements. Keep calling, keep checking with ClinicalTrial.gov. Call sites that are not quite so convenient if enrollment closes at one site but is open at the other. Make yourself known to a few research coordinators, so they will call you if something becomes available. A lot of this is timing and persistence. Good luck to you and your sister!
posted by citygirl at 10:03 PM on March 14, 2018 [2 favorites]
This thread is closed to new comments.
I absolutely suggest a visit to a major cancer center just to make sure there's nothing not on the table. That said, my relative has gotten non-fancy care on the NHS (in the UK) and has thrived more than others at major cancer centers so I can't say that more specialized is necessarily better. As for you and your sister, colon cancer is almost entirely preventable with frequent colonoscopies.
posted by caoimhe at 5:22 AM on March 14, 2018