The Colon Club

I was recommended to come here with my concerns and I'm not sure where to start but here I go.

I was diagnosed one year ago with rectal cancer, it has spread to my liver and lungs (stage 4) I started FOLFOX on August 2019 and ended in January 2020. I went on to FOLFIRI from March until now. I had to pause treatment with bloody in my stool which led me to another colonoscopy in June. The treatment after that was radiation (13 treatments total) Now, I've been stressing over what is next since I have been trying to contact my doctor for a follow up but he hasn't called me back. The last conversation sounded like it was back to chemo yet no confirmation as of yet. I didn't want to set up an appointment since I'm working from home and taking off requires some effort with paid leave (I'm happy for this) Still, the amount of stress of dealing with constant movements and the pain that comes with it around the tailbone and lower back has gotten me to a peak of frustration.

I'm not sure what is happening but I have to also face something else that had happened years ago when my father passed away with some of these symptoms I have now. Since he was stubborn to seek medical help, I'm not sure what he had prior to his passing. This is what it has come to now. I can always answer some questions you may have or adjust this post for moderation.

Aloha

I am sorry to hear of the difficulty of your situation. It appears complex, and I’m not sure I can add much, but I would say that it’s important to have a team of doctors whom (1) you trust and (2) who are communicative and responsive. It sounds like you may be having trouble with the latter at least, and if so I would push to improve that first, even if it means you have to get another doctor.

The other thing that might help is to provide as many specifics about your situation as you can with your posts, and be as specific as you can with your questions on this forum, so people who do have experience with or knowledge about situations like yours can comment more easily. The signature is a good place to put those details if you can. You can look at others’ signatures to figure out what to include. Anyhow, good luck with your treatment!

It is not acceptable, IMHO, to have a doctor whose office does not respond to you in a reasonable time. I would try to find someone who practices at a cancer center with more resources.

Good luck.

Hi ,

Big welcome from me too.

Sounds a good time to get more informed . We found it very helpful to get surgical opinions directly not just from the oncologist to see if there was more than one approach to containing the disease. You can read my signature to see the clinical pathway my mum went along .

This has already been highlight in the above post but I think communication is everything in oncology. You need to know the plan and see if you are in full agreement.

I am sorry about your dad . That must have been hard to watch and difficult to think back on just now . However you sound open to searching the best options for you .

My mum had over ten liver mets in total and one lung met showed up later .

We found it helpful to know the amount of spread and the location . For instance my mum had a spread in her liver from segment 3 through to segment 8 however the specialist liver surgeons were able to remove 73% of her liver which has now regenerated. It all depends on location of the mets . So worth a check . Her lung met was small and always operable . Others stay on permanent chemo on a level they can tolerate which is also a good plan if it’s right for the individual.

Do you know how your mets have responded to treatment?

Glad you joined in the discussion.

Take care ,

Stu

roadrunner wrote:I am sorry to hear of the difficulty of your situation. It appears complex, and I’m not sure I can add much, but I would say that it’s important to have a team of doctors whom (1) you trust and (2) who are communicative and responsive. It sounds like you may be having trouble with the latter at least, and if so I would push to improve that first, even if it means you have to get another doctor.

The other thing that might help is to provide as many specifics about your situation as you can with your posts, and be as specific as you can with your questions on this forum, so people who do have experience with or knowledge about situations like yours can comment more easily. The signature is a good place to put those details if you can. You can look at others’ signatures to figure out what to include. Anyhow, good luck with your treatment!

Totally agree with the two points. As of now, I am working on certain things that I have been dealing with for a long time and when my father passed away, I took a serious look into my physical health and wrangled that before this came up but I will put up as much I can in the signature

boxhill wrote:It is not acceptable, IMHO, to have a doctor whose office does not respond to you in a reasonable time. I would try to find someone who practices at a cancer center with more resources.

Good luck.

I'm considering that however I'm a working professional and it's difficult to seek it with my tight schedule but I feel better now than I was before with him. Thanks for the suggestion.

stu wrote:Hi ,

Big welcome from me too.

Sounds a good time to get more informed . We found it very helpful to get surgical opinions directly not just from the oncologist to see if there was more than one approach to containing the disease. You can read my signature to see the clinical pathway my mum went along .

This has already been highlight in the above post but I think communication is everything in oncology. You need to know the plan and see if you are in full agreement.

I am sorry about your dad . That must have been hard to watch and difficult to think back on just now . However you sound open to searching the best options for you .

My mum had over ten liver mets in total and one lung met showed up later .

We found it helpful to know the amount of spread and the location . For instance my mum had a spread in her liver from segment 3 through to segment 8 however the specialist liver surgeons were able to remove 73% of her liver which has now regenerated. It all depends on location of the mets . So worth a check . Her lung met was small and always operable . Others stay on permanent chemo on a level they can tolerate which is also a good plan if it’s right for the individual.

Do you know how your mets have responded to treatment?

Glad you joined in the discussion.

Take care ,

Stu

To answer the mets question, it has been one in the liver and six or seven in the lungs. They've been growing slowly with treatment, which I'm concerned about yet the doctor has assured me it isn't alarming. I feel if it was dynamically worse, then he would take it on, I've been told that I could work on the liver but I feel that seems rather minor than to rather do the whole thing (honestly i don't know if that was the right plan)

As a stage 3 patient, this really isn’t an area where I feel confident that I’m going to be helpful, so please forgive me for venturing a limited observation (that may or may not be relevant). My extensive reading on issues I saw as relevant to me has given me this “side” impression of situations like the one you describe:

Synchronous liver and lung CRC mets used to be widely regarded as inoperable, and patients with them were given palliative chemo regimens. That has changed *dramatically* in recent years, with a number of surgeons and cancer centers taking an aggressive approach to resection of mets in one or both organs, sometimes with very good success rates. But approaches still vary *widely* among surgeons and oncologists, from the “traditional” SOC described above to multiple more aggressive approaches.

Thus, this situation appears to be one where a patient would be well-advised to educate him- or herself extensively about all available options and about the different approaches taken by different surgeons and cancer centers. Of course not everyone loves tracking down and reading scientific papers that they can only understand about a third of as much as I do : ) so perhaps the way to address this would be to do what lots of folks on this board advise and make sure you consult with a major cancer center (at least for a second opinion, which you may be able to get remotely). It’s best to be clear and definite with your doctors about your goals if and when you do that.

Of course, everyone is different, so there are no guarantees that such an approach will produce the kind of strategic path you want, but IMO it’s super important in your situation as I understand it, more so than in many other situations where the course and options may be clearer and subject to broader consensus.

Like I said, that’s just an impression — maybe you’ve already done this, or maybe there are facts I’m missing or don’t know, but just offering it for consideration in the hope that it helps.

roadrunner wrote:As a stage 3 patient, this really isn’t an area where I feel confident that I’m going to be helpful, so please forgive me for venturing a limited observation (that may or may not be relevant). My extensive reading on issues I saw as relevant to me has given me this “side” impression of situations like the one you describe:

Synchronous liver and lung CRC mets used to be widely regarded as inoperable, and patients with them were given palliative chemo regimens. That has changed *dramatically* in recent years, with a number of surgeons and cancer centers taking an aggressive approach to resection of mets in one or both organs, sometimes with very good success rates. But approaches still vary *widely* among surgeons and oncologists, from the “traditional” SOC described above to multiple more aggressive approaches.

Thus, this situation appears to be one where a patient would be well-advised to educate him- or herself extensively about all available options and about the different approaches taken by different surgeons and cancer centers. Of course not everyone loves tracking down and reading scientific papers that they can only understand about a third of as much as I do : ) so perhaps the way to address this would be to do what lots of folks on this board advise and make sure you consult with a major cancer center (at least for a second opinion, which you may be able to get remotely). It’s best to be clear and definite with your doctors about your goals if and when you do that.

Of course, everyone is different, so there are no guarantees that such an approach will produce the kind of strategic path you want, but IMO it’s super important in your situation as I understand it, more so than in many other situations where the course and options may be clearer and subject to broader consensus.

Like I said, that’s just an impression — maybe you’ve already done this, or maybe there are facts I’m missing or don’t know, but just offering it for consideration in the hope that it helps.

thanks for the insight

Update:
Seems like I have Proctitis (from the symptoms and the doctors told me that's the case) It is more of nuisance than anything and has kept my chemo on hold. The fact that what happens after the scan in three weeks will determine my fate, he wants me back on Keytruda which was fine but other opinions went against that after one treatment and my body reacted wildly to it. I'm not too sure how long i'll have this but follow ups with the doctors will help in determining what to do next in the current state.

kurosan808 wrote:Update:
Seems like I have Proctitis (from the symptoms and the doctors told me that's the case) It is more of nuisance than anything and has kept my chemo on hold. The fact that what happens after the scan in three weeks will determine my fate, he wants me back on Keytruda which was fine but other opinions went against that after one treatment and my body reacted wildly to it. I'm not too sure how long i'll have this but follow ups with the doctors will help in determining what to do next in the current state.

It wasn't proctitis :/ I had to go to the emergency room because I had some abdominal pain and got a CT scan while I was there. The cancer itself grew with the mets. I had a feeling it would happen after almost two months of no active treatment. Since the issue wasn't resolved, I would go back to chemo however with the constant bowel movements, I had explained it would be difficult to stay in a chair or a bed for at least two hours, if not ten fifteen minutes. He decided to do Xeloda as an in between and add the rest on a later date, Kinda sucked that it wasn't known sooner because of the pandemic but for now, what's your guys opinion of Xeloda, I have read both sides of the spectrum for the medication?