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!
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.
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 ,
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.
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.
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