Colon cancer chronicles: surgery and some conflicting information
May 1, 2023 7:36 AM Subscribe
YANMD. This morning, I had a consultation with my surgeon. I've been getting some conflicting information, so want to make sure I'm not missing anything. Again, YANMD.
Last week, I met with my oncologist, who warned me that there would be a possibility of having to resort to bags for #2 movements after the surgery. When I asked her if taking Miralax everyday (as my PCP recommended) would be okay/safe, and not cause dependence, she said that it was fine and would not cause dependence. I was also told recovery from surgery could take up to 6 weeks.
This morning, I had a consultation with the surgeon (first time ever meeting her). She said the chances of moving to bags (I believe it's called an ostomy) was very low (less than 1%) and when I explained I took Miralax everyday based on my PCP's advice, she warned me that Miralax could cause dependence, but concluded that I take it until the surgery/removal of the tumor is done. She also said that I'd not be bed-ridden after surgery and should return to normal (ie, walking, working, etc) within ~1-2 weeks, just not doing any heavy-lifting for a while. She said the low chance of ostomy was because the mass/tumor was found on the right side of my body, so it'd be easy to re-link the colon once removed. She also said chemo would be a possibility, but also seemed confident that surgery would fix it and seemed positive overall (kept emphasizing that I'm young and this should be pretty straightforward). She showed me a graphical representation of what was inside and what the mass looked like.
This information is a relief to me, because I was honestly contemplating getting the procedure done in California and be with family to recover for the ~6 weeks originally anticipated, because I live alone and my friends here are so busy, so it'd be hard to have a support system. I was under the impression that I'd be immobile and bed-ridden for weeks after surgery. I was also very worried about the ostomy possibility. So, the consultation with the surgeon/doctor this morning was a relief—doesn't seem as bad as I thought.
However, I get a general vibe of "the left hand doesn't know what the right hand is doing" in terms of conflicting information (Miralax frequency/dependence, surgery recovery timeframe, ostomy) so wanted to turn to the Green and make sure I'm not missing anything? Would you, generally, trust a surgeon over doctors? Again, YANMD, but I just want to get a pulse here and see if this is making sense and if there isn't something I'm overlooking.
A second opinion might not be possible because I'm on a HMO plan with Kaiser, FWIW.
Thanks!
Last week, I met with my oncologist, who warned me that there would be a possibility of having to resort to bags for #2 movements after the surgery. When I asked her if taking Miralax everyday (as my PCP recommended) would be okay/safe, and not cause dependence, she said that it was fine and would not cause dependence. I was also told recovery from surgery could take up to 6 weeks.
This morning, I had a consultation with the surgeon (first time ever meeting her). She said the chances of moving to bags (I believe it's called an ostomy) was very low (less than 1%) and when I explained I took Miralax everyday based on my PCP's advice, she warned me that Miralax could cause dependence, but concluded that I take it until the surgery/removal of the tumor is done. She also said that I'd not be bed-ridden after surgery and should return to normal (ie, walking, working, etc) within ~1-2 weeks, just not doing any heavy-lifting for a while. She said the low chance of ostomy was because the mass/tumor was found on the right side of my body, so it'd be easy to re-link the colon once removed. She also said chemo would be a possibility, but also seemed confident that surgery would fix it and seemed positive overall (kept emphasizing that I'm young and this should be pretty straightforward). She showed me a graphical representation of what was inside and what the mass looked like.
This information is a relief to me, because I was honestly contemplating getting the procedure done in California and be with family to recover for the ~6 weeks originally anticipated, because I live alone and my friends here are so busy, so it'd be hard to have a support system. I was under the impression that I'd be immobile and bed-ridden for weeks after surgery. I was also very worried about the ostomy possibility. So, the consultation with the surgeon/doctor this morning was a relief—doesn't seem as bad as I thought.
However, I get a general vibe of "the left hand doesn't know what the right hand is doing" in terms of conflicting information (Miralax frequency/dependence, surgery recovery timeframe, ostomy) so wanted to turn to the Green and make sure I'm not missing anything? Would you, generally, trust a surgeon over doctors? Again, YANMD, but I just want to get a pulse here and see if this is making sense and if there isn't something I'm overlooking.
A second opinion might not be possible because I'm on a HMO plan with Kaiser, FWIW.
Thanks!
I would be inclined to trust a surgeon on things related to your specific surgery (likelihood of ostomy, likely recovery time) and a doctor on more general doctor things (Miralax dependence—IANAD but my understanding is that it's not a stimulant laxative so your doctor was right). But I would also encourage you to ask both of them clarifying questions! The difference between 1–2 weeks and 6 weeks is pretty big and you need to know how to plan, so it's totally okay to say "just checking—I was told to prepare for being out of commission for six weeks, can you clarify why that probably won't be necessary in my case?" As restless_nomad said, it sounds like your doctor is telling you the possible max recovery time; your surgeon may know something about your specific case that makes her estimate a shorter recovery, the way she knew details that made her estimate a lower likelihood of ostomy.
posted by babelfish at 7:46 AM on May 1, 2023 [5 favorites]
posted by babelfish at 7:46 AM on May 1, 2023 [5 favorites]
Best answer: I'd go with the surgeon. She's the more relevant expert on the specifics of this surgery on your body and its mostly likely outcomes. Also in my experience, surgeons are the *least* likely to sugarcoat things or create unduly optimistic expectations, but that's probably not completely universal.
posted by SaltySalticid at 7:48 AM on May 1, 2023 [3 favorites]
posted by SaltySalticid at 7:48 AM on May 1, 2023 [3 favorites]
Best answer: I recommend that you find out if a second opinion might be possible. The biggest regret of my life is not "forcing" my father to get a second opinion about his cancer; the resulting differences in approach could have meant a much healthier and happier end of life for him.
And there's nothing wrong with asking for clarification from either the oncologist or the surgeon. I do agree with restless_nomad that they're generally talking possibilities vs. likely outcomes. The oncologist is giving you a more broad, general idea of what could happen based on her experiences with this type of diagnosis, and the surgeon is giving you a closer look at what has happened with her patients of this type in the past. That doesn't mean that either of them are more right or more wrong than the other, they're just coming at it from different areas of expertise.
Now, what I would be concerned about is if your oncologist didn't mention chemo at all in your conversation. Based on what you wrote above, it doesn't sound like it? Perhaps she's just waiting to see what the result of the surgery is, but if she didn't mention it being a possibility at all, I'd maybe want a different oncologist. And not because I don't think she's competent, I just want my medical professionals to lay everything out on the table for me.
posted by cooker girl at 7:48 AM on May 1, 2023 [1 favorite]
And there's nothing wrong with asking for clarification from either the oncologist or the surgeon. I do agree with restless_nomad that they're generally talking possibilities vs. likely outcomes. The oncologist is giving you a more broad, general idea of what could happen based on her experiences with this type of diagnosis, and the surgeon is giving you a closer look at what has happened with her patients of this type in the past. That doesn't mean that either of them are more right or more wrong than the other, they're just coming at it from different areas of expertise.
Now, what I would be concerned about is if your oncologist didn't mention chemo at all in your conversation. Based on what you wrote above, it doesn't sound like it? Perhaps she's just waiting to see what the result of the surgery is, but if she didn't mention it being a possibility at all, I'd maybe want a different oncologist. And not because I don't think she's competent, I just want my medical professionals to lay everything out on the table for me.
posted by cooker girl at 7:48 AM on May 1, 2023 [1 favorite]
Response by poster: Now, what I would be concerned about is if your oncologist didn't mention chemo at all in your conversation. Based on what you wrote above, it doesn't sound like it?
No, my oncologist definitely mentioned the possibility of chemo when we met last week, and her guess was it'd be up to 6 months (worst case scenario). She was very transparent and clear throughout — I got a good vibe from her. She explained the differences between chemo and radiation, and explained that radiation generally doesn't apply to colon cancer, and is used more for lung cancer, etc.
It sounds like everything the oncologist told you is possible and what the surgeon told you is what is likely. They're not exactly in conflict, they're just focusing on different kinds of information.
Makes perfect sense to me. Didn't think of it that way.
posted by dubious_dude at 7:53 AM on May 1, 2023 [4 favorites]
No, my oncologist definitely mentioned the possibility of chemo when we met last week, and her guess was it'd be up to 6 months (worst case scenario). She was very transparent and clear throughout — I got a good vibe from her. She explained the differences between chemo and radiation, and explained that radiation generally doesn't apply to colon cancer, and is used more for lung cancer, etc.
It sounds like everything the oncologist told you is possible and what the surgeon told you is what is likely. They're not exactly in conflict, they're just focusing on different kinds of information.
Makes perfect sense to me. Didn't think of it that way.
posted by dubious_dude at 7:53 AM on May 1, 2023 [4 favorites]
I don't have any experience with this, but I would trust the surgeon on the question of the ostomy. This is directly related to surgery, so she would know. I sometimes think surgeons underestimate recovery time, so it could be somewhere in the middle of the estimates, with the 6 weeks being the outside, or the time until you're back to "normal." It might also be that because you're young, your bounce-back will be faster. But you should definitely ask for clarification on that.
posted by swheatie at 7:53 AM on May 1, 2023 [1 favorite]
posted by swheatie at 7:53 AM on May 1, 2023 [1 favorite]
A family member just went through getting a colostomy and eventual reversal (for non-cancer reasons) and they got some conflicting information from the various doctors too. The surgeon seemed to be the one who really knew the specifics of what she specifically could and could not do. But yes, don’t be afraid to ask for clarification.
Regarding recovery, expect to be in pain or uncomfortable for a while after - recovering from surgery is never easy in my experience - and please give your busy friends the opportunity to look after you during this time.
posted by wondermouse at 7:56 AM on May 1, 2023 [1 favorite]
Regarding recovery, expect to be in pain or uncomfortable for a while after - recovering from surgery is never easy in my experience - and please give your busy friends the opportunity to look after you during this time.
posted by wondermouse at 7:56 AM on May 1, 2023 [1 favorite]
Best answer: Most people find the prospect of an ostomy bag very upsetting and need time to adjust. I think your oncologist was trying to prepare you for a range of outcomes in advance.
Also, recovery from surgery and ability to return to work are not quite the same thing. Full recovery from any abdominal surgery can take significant time, but that doesn't mean you're bedridden for weeks. In fact, you won't be immobilized for very long at all. They'll be harassing you to get out of bed and move around before you're even discharged.
posted by praemunire at 8:04 AM on May 1, 2023 [10 favorites]
Also, recovery from surgery and ability to return to work are not quite the same thing. Full recovery from any abdominal surgery can take significant time, but that doesn't mean you're bedridden for weeks. In fact, you won't be immobilized for very long at all. They'll be harassing you to get out of bed and move around before you're even discharged.
posted by praemunire at 8:04 AM on May 1, 2023 [10 favorites]
Best answer: Re HMOs, I have an HMO and was told by our insurance rep I couldn't get a second opinion outside of my network. So I was planning to pay for one with a top researcher for my cancer at MSK out of pocket. The MSK folks insisted on getting my insurance information even though I assured them that insurance wouldn't cover it. Well, insurance did cover it, and I just had a $30 copay. Just sharing that so you know that someone who gives you information on that might be wrong.
If at all possible, it's really important to see someone who is affiliated with an NCI Cancer Center. These are the experts and researchers who are going to be more up to date. And do try to see a specialist in your cancer, not a general oncologist. For my cancer, a study actually showed that patients seen by specialists at NCI cancer centers lived longer. This page shows you where those are.
Also, I think I've said this already, but I'd suggest signing up with the colon cancer community at SmartPatients.com. Patients there will know a lot about specific drugs and treatments that people here are mostly not going to be familiar with. There will undoubtedly be people who have experience with ostomy bags and have tips for managing them if that ends up being something you need.
Best wishes to you as you navigate this.
posted by FencingGal at 8:08 AM on May 1, 2023 [4 favorites]
If at all possible, it's really important to see someone who is affiliated with an NCI Cancer Center. These are the experts and researchers who are going to be more up to date. And do try to see a specialist in your cancer, not a general oncologist. For my cancer, a study actually showed that patients seen by specialists at NCI cancer centers lived longer. This page shows you where those are.
Also, I think I've said this already, but I'd suggest signing up with the colon cancer community at SmartPatients.com. Patients there will know a lot about specific drugs and treatments that people here are mostly not going to be familiar with. There will undoubtedly be people who have experience with ostomy bags and have tips for managing them if that ends up being something you need.
Best wishes to you as you navigate this.
posted by FencingGal at 8:08 AM on May 1, 2023 [4 favorites]
hi there, I am so sorry you are dealing with this.
I am the close caregiver for someone with a similar diagnosis, including the mass on the right side of the colon. The surgeon did not think a colostomy bag was likely and was correct, no bag! But it was definitely brought up as a possibility to be prepared for.
The surgery you are planning has not been the only surgery my person has had and in my experience surgeons are wildly optimistic about how soon you will be "recovered". This is significant not just for how much support you plan but for how they fill out any FMLA or similar forms for you.
Take the longest time the surgeon says and double it for a realistic estimate for your recovery, that's my rule of thumb.
If they are filling out leave forms for you, send them to the surgeon's office with a cover letter asking them to please estimate the worst possible scenario and also to emphasize the unpredictable nature of your condition.
Even though you are young and the surgeon thinks this will be straightforward, please plan for as much support as your circumstances will allow. If you end up on your own during anything concerning, please call emergency services sooner rather than later for help. Do not worry about bothering anybody or "overreacting". Tell everyone involved that you have just had surgery for cancer.
My person recovered fantastically for 3 weeks, each day better than the previous and then an infection that had been brewing in an abscess the whole time made itself known and the situation went downhill extremely quickly. The hospitalization for the infection was 4x longer (8 days) than the hospitalization for the surgery (2 days).
Take advantage of any patient portals to send lots of follow up messages with questions that occurred to you later. I have found our medical professionals to be very responsive on these platforms.
I wish you the very best, you have my fervent hopes for a great surgery and a smooth recovery.
posted by Jenny'sCricket at 8:46 AM on May 1, 2023 [8 favorites]
I am the close caregiver for someone with a similar diagnosis, including the mass on the right side of the colon. The surgeon did not think a colostomy bag was likely and was correct, no bag! But it was definitely brought up as a possibility to be prepared for.
The surgery you are planning has not been the only surgery my person has had and in my experience surgeons are wildly optimistic about how soon you will be "recovered". This is significant not just for how much support you plan but for how they fill out any FMLA or similar forms for you.
Take the longest time the surgeon says and double it for a realistic estimate for your recovery, that's my rule of thumb.
If they are filling out leave forms for you, send them to the surgeon's office with a cover letter asking them to please estimate the worst possible scenario and also to emphasize the unpredictable nature of your condition.
Even though you are young and the surgeon thinks this will be straightforward, please plan for as much support as your circumstances will allow. If you end up on your own during anything concerning, please call emergency services sooner rather than later for help. Do not worry about bothering anybody or "overreacting". Tell everyone involved that you have just had surgery for cancer.
My person recovered fantastically for 3 weeks, each day better than the previous and then an infection that had been brewing in an abscess the whole time made itself known and the situation went downhill extremely quickly. The hospitalization for the infection was 4x longer (8 days) than the hospitalization for the surgery (2 days).
Take advantage of any patient portals to send lots of follow up messages with questions that occurred to you later. I have found our medical professionals to be very responsive on these platforms.
I wish you the very best, you have my fervent hopes for a great surgery and a smooth recovery.
posted by Jenny'sCricket at 8:46 AM on May 1, 2023 [8 favorites]
Response by poster: I know this is a personal decision, but honestly, would you err on the side of going home to California and doing the surgery there and being with family for support? My mom is willing to fly in for a few weeks, but logistics might be messy (ie, where to stay, expenses, etc), so I was originally wanting to go to CA (where Kaiser does have coverage) and get it done there, then recover for ~6 weeks.
Would you say that'd still be the ideal outcome? The surgeon made it seem like I'd be okay/on my feet within ~2-3 weeks max (she did not mention any pain), with the exception of lifting heavy items. But, if it'd be likely longer, it might be easier just to go to CA and be at my parents' home where it'd be easier overall.
This is what I'm mainly grappling with.
posted by dubious_dude at 8:51 AM on May 1, 2023
Would you say that'd still be the ideal outcome? The surgeon made it seem like I'd be okay/on my feet within ~2-3 weeks max (she did not mention any pain), with the exception of lifting heavy items. But, if it'd be likely longer, it might be easier just to go to CA and be at my parents' home where it'd be easier overall.
This is what I'm mainly grappling with.
posted by dubious_dude at 8:51 AM on May 1, 2023
It's funny the surgeon did not mention any pain. You will almost certainly be in pain.
Even if you'll be on your feet 2-3 weeks max (and with my rule of thumb, it does work out to 6 weeks), those first few days will be very intensive. I found it to be like taking care of a newborn in terms of the frequency and unpredictability of needed care. You will likely not be in a fit state to even remember your medication schedule and may need serious assistance in the bathroom. It is a job for intimates and/or professionals.
I would go to California. If you feel great soon, you can go home early! A better change of plans than finding yourself alone and in a bad situation and calling someone to come help who can't get there for a day.
posted by Jenny'sCricket at 9:02 AM on May 1, 2023
Even if you'll be on your feet 2-3 weeks max (and with my rule of thumb, it does work out to 6 weeks), those first few days will be very intensive. I found it to be like taking care of a newborn in terms of the frequency and unpredictability of needed care. You will likely not be in a fit state to even remember your medication schedule and may need serious assistance in the bathroom. It is a job for intimates and/or professionals.
I would go to California. If you feel great soon, you can go home early! A better change of plans than finding yourself alone and in a bad situation and calling someone to come help who can't get there for a day.
posted by Jenny'sCricket at 9:02 AM on May 1, 2023
Kaiser does allow second opinons--even outside of the network (i.e. I'm in the Bay Area and I know a couple of Kaiser patients who have consulted with Stanford doctors paid by Kaiser).
posted by agatha_magatha at 9:26 AM on May 1, 2023 [1 favorite]
posted by agatha_magatha at 9:26 AM on May 1, 2023 [1 favorite]
Best answer: Can any of your family come to you to help? Having surgery farther away from your home will make follow up harder and may make coordinating with your oncologist and other providers more difficult. If you do think staying with family is your best option for support, you may want to talk to your oncologist and think about staying in California for chemo etc. as well, since that can be very hard on the body and you may need support then as well (but definitely talk to your oncologist about what to expect!).
posted by MadamM at 9:44 AM on May 1, 2023 [4 favorites]
posted by MadamM at 9:44 AM on May 1, 2023 [4 favorites]
Best answer: Something to consider in the "should I have surgery in California or where I live" decision is that this surgery is part of a longer-term treatment plan, and your surgeon is ideally part of your long-term treatment team. If you have the surgery in California, it will be harder for your local oncologist to communicate with them, and harder for you to do any follow-up appointments. None of this is impossible, but it will be hard and annoying to coordinate, which is just an added headache you probably don't need.
I am close to two people who had a similar surgery while in their 20s or 30s. While they were both out of work for around 6 weeks, they both were able to live independently in probably 1 to 1.5 weeks--and both of these people were having these surgeries done after a long illness, so they were not going into it in as good of physical shape as it sounds like you are. Obviously everyone's surgical situations are different and there are no guarantees of what your experience will be like. That said, I think having someone (your mom?) come to you for the surgery and maybe two weeks after will probably be ok.
posted by mjcon at 9:57 AM on May 1, 2023 [6 favorites]
I am close to two people who had a similar surgery while in their 20s or 30s. While they were both out of work for around 6 weeks, they both were able to live independently in probably 1 to 1.5 weeks--and both of these people were having these surgeries done after a long illness, so they were not going into it in as good of physical shape as it sounds like you are. Obviously everyone's surgical situations are different and there are no guarantees of what your experience will be like. That said, I think having someone (your mom?) come to you for the surgery and maybe two weeks after will probably be ok.
posted by mjcon at 9:57 AM on May 1, 2023 [6 favorites]
This is not specific to your surgery but it still applies: as a rule, surgeons will severely understate the post-op pain (or "discomfort," as they like to call it) and over-hype the ease and speed of recovery for any procedure they are familiar with and good at. lots of reasons for this but I don't think there's any dishonesty in it and only a little ignorance; it doesn't mean the surgeon's not to be trusted for strictly surgical matters. It does mean that (in my opinion) you should plan on taking 4-6 weeks if there is any possible practical way to do so. if you're back on your feet and feeling fine in 1-2 weeks, great, but don't count on it. this goes for any major surgery.
as for the other issue, I think you can trust the PCP (or a pharmacist). surgeons often say randomly wrong things about post-op meds and over-the-counter stuff, it is frustrating but less alarming once you're used to it. in this case I bet they were thinking of different OTC substances often used for the same purpose.
posted by queenofbithynia at 9:59 AM on May 1, 2023 [1 favorite]
as for the other issue, I think you can trust the PCP (or a pharmacist). surgeons often say randomly wrong things about post-op meds and over-the-counter stuff, it is frustrating but less alarming once you're used to it. in this case I bet they were thinking of different OTC substances often used for the same purpose.
posted by queenofbithynia at 9:59 AM on May 1, 2023 [1 favorite]
Best answer: I think Mjcon's point about your care team is a good one - if you can arrange to have family come to you it will likely be better in terms of an ongoing relationship with your care team and the comfort of being at home while you're recovering.
My father had colon cancer and initially had an ostomy but was told it would be temporary - and it was. So that might also happen and is worth being aware of.
I'm sorry you're dealing with all this. Hope the surgery and recovery go as smoothly as possible. And yes - do get a second opinion from a NCI affiliated doc who specializes in colon cancer!
posted by leslies at 10:06 AM on May 1, 2023 [1 favorite]
My father had colon cancer and initially had an ostomy but was told it would be temporary - and it was. So that might also happen and is worth being aware of.
I'm sorry you're dealing with all this. Hope the surgery and recovery go as smoothly as possible. And yes - do get a second opinion from a NCI affiliated doc who specializes in colon cancer!
posted by leslies at 10:06 AM on May 1, 2023 [1 favorite]
...conflicting information (Miralax frequency/dependence, surgery recovery timeframe, ostomy) so wanted to turn to the Green and make sure I'm not missing anything...
Respectfully, I don't think this is the forum for regular, detailed health questions for someone with a cancer diagnosis. I know Ask has been a source of information and support for you over a range of questions as well as for ongoing themes in your life (as it has been for me), but the "hive mind" is not a consistent, reliable source for the kind of specific, individualized information you will need as you go through this.
I have been where you are, albeit with a different flavor of cancer. I was surprised to learn that physicians, nurses and other oncology healthcare professionals do participate in many online forums. Those are the places where information is combined with the shared experiences that create a true community. Where no matter how granular your questions may get - a particular white count or liver enzyme count or which location to choose for procedure X - the people there know exactly what you are talking about and they've already found the research papers or current clinical trials that address it.
Those are the places where you will find the ongoing, personal support that makes dealing with the side effects and weird family responses and existential dread and everything else so much easier. A quick look just at facebook shows me several colon cancer groups, several "deaf cancer" groups, etc. You might want to seek out "AYA" cancer groups too (adolescents and young adults - most people with colon cancer are much older than you and the treatments/side effects/life effects differ greatly).
Don't settle for dopamine hits in the shape of anecdotal responses when it comes to your health. You will benefit a thousand times more from a community of people who are there for the same reason you are, and who you can help and be helped by in equal measure.
posted by headnsouth at 10:25 AM on May 1, 2023 [10 favorites]
Respectfully, I don't think this is the forum for regular, detailed health questions for someone with a cancer diagnosis. I know Ask has been a source of information and support for you over a range of questions as well as for ongoing themes in your life (as it has been for me), but the "hive mind" is not a consistent, reliable source for the kind of specific, individualized information you will need as you go through this.
I have been where you are, albeit with a different flavor of cancer. I was surprised to learn that physicians, nurses and other oncology healthcare professionals do participate in many online forums. Those are the places where information is combined with the shared experiences that create a true community. Where no matter how granular your questions may get - a particular white count or liver enzyme count or which location to choose for procedure X - the people there know exactly what you are talking about and they've already found the research papers or current clinical trials that address it.
Those are the places where you will find the ongoing, personal support that makes dealing with the side effects and weird family responses and existential dread and everything else so much easier. A quick look just at facebook shows me several colon cancer groups, several "deaf cancer" groups, etc. You might want to seek out "AYA" cancer groups too (adolescents and young adults - most people with colon cancer are much older than you and the treatments/side effects/life effects differ greatly).
Don't settle for dopamine hits in the shape of anecdotal responses when it comes to your health. You will benefit a thousand times more from a community of people who are there for the same reason you are, and who you can help and be helped by in equal measure.
posted by headnsouth at 10:25 AM on May 1, 2023 [10 favorites]
A few more data points:
-I was diagnosed with thyroid cancer at 22 years old, just after graduating college in State #1. I quit my summer job, and had surgery and radioactive iodine treatment in Home State, staying with my parents, and then moved to State #3. Doctors in Home State were able to coordinate my treatment, and get me right in with a doctor in State #3 for follow up care. But, I will say, my treatment plan was more set in stone (doctors knew I needed radioactive iodine, I had a set timeline for when I would be done). I was also younger and was honestly OK with reverting back to being a kid for a little bit; YMMV depending on your age and relationship with your parents.
-I just had abdominal surgery (a c-section), and yes, the timeline was both 1-2 weeks and 6 weeks for healing up. I could get up and moving in the first couple of weeks, but it hurt, I was slow, I definitely was not up for anything besides the bare minimum; at the end of two weeks, I was somewhat self sufficient, could drive my car again, etc. By 6 weeks, I was pretty much back to normal activity levels.
posted by damayanti at 10:27 AM on May 1, 2023
-I was diagnosed with thyroid cancer at 22 years old, just after graduating college in State #1. I quit my summer job, and had surgery and radioactive iodine treatment in Home State, staying with my parents, and then moved to State #3. Doctors in Home State were able to coordinate my treatment, and get me right in with a doctor in State #3 for follow up care. But, I will say, my treatment plan was more set in stone (doctors knew I needed radioactive iodine, I had a set timeline for when I would be done). I was also younger and was honestly OK with reverting back to being a kid for a little bit; YMMV depending on your age and relationship with your parents.
-I just had abdominal surgery (a c-section), and yes, the timeline was both 1-2 weeks and 6 weeks for healing up. I could get up and moving in the first couple of weeks, but it hurt, I was slow, I definitely was not up for anything besides the bare minimum; at the end of two weeks, I was somewhat self sufficient, could drive my car again, etc. By 6 weeks, I was pretty much back to normal activity levels.
posted by damayanti at 10:27 AM on May 1, 2023
Best answer: I think that your surgeon will have a better grasp on how likely an ostomy is. I also think they are working on different definitions of recovery. I would ask/try to find out specific things like when would you be able to drive again, or live by yourself, or whatever else you can think of that would help you decide where to have the surgery.
posted by plonkee at 10:47 AM on May 1, 2023 [1 favorite]
posted by plonkee at 10:47 AM on May 1, 2023 [1 favorite]
Best answer: I wouldn't fly across the country for this surgery. It really is important to be close to your care team. My father was diagnosed and treated for cancer in one state. Then they moved to my state and he relapsed. Getting all the info from his previous doctors was a lot more difficult than it should have been, or that we thought it would be. And with continuous care (i.e. staying where you are and not changing doctors), the doctors are so much more familiar with you and your case and that makes treatment so much easier.
If your mom can come out to you for a few weeks, I would take her up on that.
posted by cooker girl at 11:14 AM on May 1, 2023 [3 favorites]
If your mom can come out to you for a few weeks, I would take her up on that.
posted by cooker girl at 11:14 AM on May 1, 2023 [3 favorites]
It does sound like "come wait on me hand and foot for two weeks" would be a good way for your mom to channel the anxiety into something productive. And in my experience of various abdominal surgeries, including a guy with Stage IV colon cancer that was all but occluding the colon, two-three weeks to being able to take care of yourself sounds plausible, with 6-10 weeks to being able to exert yourself. Do note that the first two weeks or so you'll probably be beyond exhausted and needing to rest for like 22 hours out of each 24, so assistance is good.
posted by I claim sanctuary at 12:13 PM on May 1, 2023 [1 favorite]
posted by I claim sanctuary at 12:13 PM on May 1, 2023 [1 favorite]
honestly, i would do the surgery where you live, or close by at least. have your family come stay with you or in the area to assist you as needed. you'll have follow up weeks and months out from the surgery and you don't want to have to fly to california every time.
i would follow up with both your docs via online portal. i know that you're Deaf, and i can't imagine the layer of complexity having an ASL interpreter (translator?) adds to discussing a major health issue.
posted by misanthropicsarah at 12:28 PM on May 1, 2023
i would follow up with both your docs via online portal. i know that you're Deaf, and i can't imagine the layer of complexity having an ASL interpreter (translator?) adds to discussing a major health issue.
posted by misanthropicsarah at 12:28 PM on May 1, 2023
You will likely be “on your feet” but with severe lifting restrictions. Generally, you aren’t allowed to lift more than 8 pounds (a gallon of milk is roughly that weight) for 6-8 weeks. There may also be some bending over restrictions depending on exact location and what had to be cut. That amount of weight restriction is Very Limiting. I couldn’t get my own car door (even as a passenger!), couldn’t carry my bag, couldn’t vacuum, if something fell it generally had to stay there until someone else came along to pick it up. Cooking was really difficult.
I would want to have help come by at least once every 24-48 hours during your weight restriction period. If that’s going to be tricky, I would go back to California for the surgery.
Also. The surgical plan can change once they get into your abdomen. If things were quite different than they expected, you might have some trouble.
posted by Bottlecap at 1:27 PM on May 1, 2023 [1 favorite]
I would want to have help come by at least once every 24-48 hours during your weight restriction period. If that’s going to be tricky, I would go back to California for the surgery.
Also. The surgical plan can change once they get into your abdomen. If things were quite different than they expected, you might have some trouble.
posted by Bottlecap at 1:27 PM on May 1, 2023 [1 favorite]
Response by poster: Generally, you aren’t allowed to lift more than 8 pounds (a gallon of milk is roughly that weight) for 6-8 weeks.
My surgeon notes in the after-visit summary mention 15lb or more should not be lifted for 4 weeks, so perhaps that's something that's individualized to me? I don't think anything is really an issue, I can get smaller jugs, and my apartment entry door is a bit heavy, but probably not 8lbs heavy.
Respectfully, I don't think this is the forum for regular, detailed health questions for someone with a cancer diagnosis.
I do see your point, but the thing is, I've been coming here for years and people know me, so it feels more helpful. I definitely am not trying to go beyond the scope of YANMD, though. I just feel comfortable here and I've always gotten incredibly helpful answers in the past that really helped. I do like the idea of going on a more specialized website that helps with specific questions about cancer stuff, though, but I do think my question today was more general — I just felt conflicted.
As for surgery in CA or here, many brought up good points about coordination of care in one place. Honestly, most likely I'll do it here and have my mom come and help for 2 weeks.
Sorry if I'm threadsitting, this is such a complicated and fraught situation and I'm doing the best I can to make the best decisions for myself. This isn't easy at all. I really appreciate all of your valuable help. It's interesting how medical officials (doctors, surgeons, nurses, etc.) have different styles and perspectives, but that's what makes the world a beautiful place.
I also asked my PCP for a referral to a NCI in DC, as per someone's advice. Hopefully they'll approve and I can get a second opinion perhaps!
With that said, I'll stop posting out of respect to the threadsitting rules.
posted by dubious_dude at 2:03 PM on May 1, 2023
My surgeon notes in the after-visit summary mention 15lb or more should not be lifted for 4 weeks, so perhaps that's something that's individualized to me? I don't think anything is really an issue, I can get smaller jugs, and my apartment entry door is a bit heavy, but probably not 8lbs heavy.
Respectfully, I don't think this is the forum for regular, detailed health questions for someone with a cancer diagnosis.
I do see your point, but the thing is, I've been coming here for years and people know me, so it feels more helpful. I definitely am not trying to go beyond the scope of YANMD, though. I just feel comfortable here and I've always gotten incredibly helpful answers in the past that really helped. I do like the idea of going on a more specialized website that helps with specific questions about cancer stuff, though, but I do think my question today was more general — I just felt conflicted.
As for surgery in CA or here, many brought up good points about coordination of care in one place. Honestly, most likely I'll do it here and have my mom come and help for 2 weeks.
Sorry if I'm threadsitting, this is such a complicated and fraught situation and I'm doing the best I can to make the best decisions for myself. This isn't easy at all. I really appreciate all of your valuable help. It's interesting how medical officials (doctors, surgeons, nurses, etc.) have different styles and perspectives, but that's what makes the world a beautiful place.
I also asked my PCP for a referral to a NCI in DC, as per someone's advice. Hopefully they'll approve and I can get a second opinion perhaps!
With that said, I'll stop posting out of respect to the threadsitting rules.
posted by dubious_dude at 2:03 PM on May 1, 2023
I had seven polyps on my ilium, one very small one had cancerous cells at the tip. They were taken out the day of the colonoscopy. There was no pain. Period. But my GI doc sent me to a surgeon who was not an oncologist, who offered to cut me open, beyond belief, take out 16 lymph nodes, stage my cancer, and order chemo.
I called the pathologist, and asked, "since the cancer is out, isn't it gone?" She said yes, and in 99% of times adenomas don't return after removal. I checked to see if she has seen all the adenomas, and she had. This surgeon would have happily have killed me for money. I am having my second look in June. The first colonoscopy was late in 2017.
Get a second opinion, don't be shy, talk to the pathologist, discuss type, and size, margins, etc.
posted by Oyéah at 2:55 PM on May 1, 2023
I called the pathologist, and asked, "since the cancer is out, isn't it gone?" She said yes, and in 99% of times adenomas don't return after removal. I checked to see if she has seen all the adenomas, and she had. This surgeon would have happily have killed me for money. I am having my second look in June. The first colonoscopy was late in 2017.
Get a second opinion, don't be shy, talk to the pathologist, discuss type, and size, margins, etc.
posted by Oyéah at 2:55 PM on May 1, 2023
IANAD however my understanding is that walking after surgery is really important for recovery. I think that for the majority of patients who have had some kind surgery, the goal is to get up and walking as soon as possible.
I've had my appendix removed and have had a C section. In both cases, getting up and out of bed was a real struggle and I needed to avoid driving and heavy lifting for several weeks. But walking was not as much of an issue. It just felt a bit uncomfortable to try to stand up straight.
posted by kinddieserzeit at 4:47 PM on May 1, 2023
I've had my appendix removed and have had a C section. In both cases, getting up and out of bed was a real struggle and I needed to avoid driving and heavy lifting for several weeks. But walking was not as much of an issue. It just felt a bit uncomfortable to try to stand up straight.
posted by kinddieserzeit at 4:47 PM on May 1, 2023
Have the surgery at home. This is your first surgery and the beginning of your journey. You might go under the knife again, better to build a relationship with your surgical team in case there is a next time.
Follow up care at home is essential in the worst case scenario. Family members won’t know what to do with an ostomy, but the ostomy nurse will save your life if it comes to that. Best to be local.
My husband did three colorectal surgeries, how good he felt after was largely a function of how sick he was going in. If you have support for groceries, housekeeping, laundry you should be good at home by yourself a week or two post discharge.
posted by shock muppet at 11:44 PM on May 1, 2023 [1 favorite]
Follow up care at home is essential in the worst case scenario. Family members won’t know what to do with an ostomy, but the ostomy nurse will save your life if it comes to that. Best to be local.
My husband did three colorectal surgeries, how good he felt after was largely a function of how sick he was going in. If you have support for groceries, housekeeping, laundry you should be good at home by yourself a week or two post discharge.
posted by shock muppet at 11:44 PM on May 1, 2023 [1 favorite]
I had colon cancer years ago, and they cut out a good chunk of my guts and patched me back together. I remember telling people the recovery wasn't as bad as I expected, it was just as bad as I expected and it was much worse than I expected. It was somehow all of these things, at once.
Do everything you can to keep your lungs clear. Your lungs will want to fill up with crud and make you cough and coughing will hurt like hell, so do all the lung exercises and stuff they tell you to do. Bring cough drops or suckable candies with you to the hospital, just in case. You really don't want to cough.
They did an epidural for me, which did a good job controlling the pain. While you're in the hospital you won't be in major pain, as long as you're sitting still. Getting up from bed, walking or coughing are another matter.
They put a catheter in, and as a penis-having person that meant a big fat tube up my willie for a week. Nobody warned me about that and it was a bit of a shock to wake up to, so I'm warning you. I ended up getting a very nasty UTI from it, and the infection stuck with me for months and was one of the worst parts of my recovery. Apparently UTIs aren't uncommon following catheter use, so if your doctors use one, be sure to ask what you can do to avoid a UTI. There was half a second of agony, when they yanked it out. It was super brief but I'll never forget it. Ask them if there's any way for you to avoid a catheter. There probably isn't, but ask.
I was unemployed during my recovery but if I'd had a job I'm not sure how long it would've been before I felt like I could go back to work. I slept so, so much, for many weeks. I scared myself with how much I needed to sleep. I'd wake up from a 12-hour sleep and two hours later I was ready to pass out again, and I think that probably went on for over a month.
My immune system has never been good but it was worse for months after my surgery. I got pneumonia and other stuff. Even when it's been a few months and you're feeling much better, you should still be extra careful about your health.
If the surgeon is saying there's a 1% chance you'll need a bag, you can trust that she's probably done a lot of these procedures and she knows what she's talking about.
posted by Ursula Hitler at 3:49 AM on May 2, 2023 [1 favorite]
Do everything you can to keep your lungs clear. Your lungs will want to fill up with crud and make you cough and coughing will hurt like hell, so do all the lung exercises and stuff they tell you to do. Bring cough drops or suckable candies with you to the hospital, just in case. You really don't want to cough.
They did an epidural for me, which did a good job controlling the pain. While you're in the hospital you won't be in major pain, as long as you're sitting still. Getting up from bed, walking or coughing are another matter.
They put a catheter in, and as a penis-having person that meant a big fat tube up my willie for a week. Nobody warned me about that and it was a bit of a shock to wake up to, so I'm warning you. I ended up getting a very nasty UTI from it, and the infection stuck with me for months and was one of the worst parts of my recovery. Apparently UTIs aren't uncommon following catheter use, so if your doctors use one, be sure to ask what you can do to avoid a UTI. There was half a second of agony, when they yanked it out. It was super brief but I'll never forget it. Ask them if there's any way for you to avoid a catheter. There probably isn't, but ask.
I was unemployed during my recovery but if I'd had a job I'm not sure how long it would've been before I felt like I could go back to work. I slept so, so much, for many weeks. I scared myself with how much I needed to sleep. I'd wake up from a 12-hour sleep and two hours later I was ready to pass out again, and I think that probably went on for over a month.
My immune system has never been good but it was worse for months after my surgery. I got pneumonia and other stuff. Even when it's been a few months and you're feeling much better, you should still be extra careful about your health.
If the surgeon is saying there's a 1% chance you'll need a bag, you can trust that she's probably done a lot of these procedures and she knows what she's talking about.
posted by Ursula Hitler at 3:49 AM on May 2, 2023 [1 favorite]
I second everyone saying the surgeon is likely to be giving you a decently accurate idea of the risk of an ostomy, and vastly underestimating how long it'll take to recover. If your mum can come visit for a while, that sounds ideal to me. For context, I have had three laproscopic abdominal surgeries of increasing impact. After the last one, I needed help getting into and out of my first shower, and I couldn't really bend down and pick things up for a good three or four days. After two weeks I could have looked after myself, but it would have been pretty miserable.
posted by In Your Shell Like at 5:38 AM on May 2, 2023
posted by In Your Shell Like at 5:38 AM on May 2, 2023
I had abdominal surgery in November; while it is true that I was “on my feet” immediately and could walk around my apartment, it would have been impossible for me to take care of myself without live-in help for at least the first few weeks. It’s not just “lifting” that can be a problem, but any activity that engages your core: sitting/standing and getting out of bed, bending at the kitchen counter to cook or wash dishes, doing laundry, picking up dropped things or cleaning up spills, putting on socks, etc.
I really loved my surgeon and felt well taken care of, but I agree with other posters who say that surgeons can underestimate the disruption of recovery on everyday life. Even though I could technically do many of my normal activities after a few weeks, those activities took far more time and energy than they normally do, and I was still profoundly exhausted after two months. And the mental/emotional toll of needing to be careful and delicate with myself was also quite wearing. In my opinion, anything you can do to maximize rest will be in the best interest of your recovery.
I also agree that being in your own city is probably for the best—you want to be near your providers in case of complications (which can occur even after you feel recovered and have gone back to your home city), and you might not want to travel for awhile even after you are recovered enough to otherwise “return to daily life.” I can barely imagine navigating an airport with luggage at six weeks post-op, let alone twisting through the aisles of an airplane, cramming awkwardly into those seats, and stabilizing myself in an airport bathroom.
posted by CtrlAltDelete at 4:44 PM on May 2, 2023 [2 favorites]
I really loved my surgeon and felt well taken care of, but I agree with other posters who say that surgeons can underestimate the disruption of recovery on everyday life. Even though I could technically do many of my normal activities after a few weeks, those activities took far more time and energy than they normally do, and I was still profoundly exhausted after two months. And the mental/emotional toll of needing to be careful and delicate with myself was also quite wearing. In my opinion, anything you can do to maximize rest will be in the best interest of your recovery.
I also agree that being in your own city is probably for the best—you want to be near your providers in case of complications (which can occur even after you feel recovered and have gone back to your home city), and you might not want to travel for awhile even after you are recovered enough to otherwise “return to daily life.” I can barely imagine navigating an airport with luggage at six weeks post-op, let alone twisting through the aisles of an airplane, cramming awkwardly into those seats, and stabilizing myself in an airport bathroom.
posted by CtrlAltDelete at 4:44 PM on May 2, 2023 [2 favorites]
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