u/DruidWonder

Trying to understand MSI-H/dMMR in right-sided CRC

"Microsatellite Instability-High (MSI-H) / Deficient Mismatch Repair (dMMR)" colorectal cancer.

I haven't even seen a surgeon or oncologist yet (I am scheduled), I've just been gathering info from many sources. My pathology report shows "MMR abnormal, MSI-H / dMMR due to loss of MLH1." So my tumor is MSI-H.

I'm stage 2 right-sided colon cancer on CT, which of course could actually be early stage 3 and we wouldn't know. Tumor is 6cm in my cecum and distinct, but colonoscopy biopsies from all other parts of my colon show no dysplasia.

I only got diagnosed with cancer last week so this is all very new to me... and I am wary of Dr. Google. Could anyone here help me shed light on this finding? The initial GI surgeon I spoke to at the hospital when the discovery was made said I would be looking at total colectomy because I also have ulcerative colitis, but I heard that MSI-H might mean a different approach that is more organ-preserving. Ahead of the appointment, I have been mentally preparing myself for having to live with an ileostomy.

My UC is active but mild currently. Before the CRC diagnosis, my UC was actually recovering, but then the tumor pain was what led me to the hospital. The interventions in the hospital (antibiotics, colonoscopy prep, colonoscopy itself + the weird hopsital food) set it off again, but it's still not too bad.

Does anyone with more knowledge in this game have an idea? I'm not asking for a "what should I do" or medical advice. I mostly just want to know what this MSI-H thing means and what kind of research I should maybe do next to find out more. Also if anyone else here is dMMR/MSI-H and has a personal experience to share, I'd love that.

Sorry for the long post, I wanted to cover everything. Thank you so much!

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u/DruidWonder — 1 day ago

Oxalates and kidney stones

I am not asking for medical advice, just wondering if anyone has encountered this issue.

I am a kidney stone former... nothing frequent, but I have dealt with painful stones in the past. I have been told to avoid veggies that are high oxalate, like beetroot, cruciferous veg, etc.

At the same time, I need to start juicing for another health condition. It's been recommended I just go with carrot, celery and cucumber to stay safe, but that's going to get pretty boring.

Just wondering if anyone else has a kidney stone issue and if juicing has ever triggered it. If so, how did you change your juicing routine to maximize nutrients while not contributing to stones?

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u/DruidWonder — 1 day ago
▲ 2 r/Piracy

Best torrents for Asian TV series?

My usual sources seem to be only be adequate for western movies and TV. In particular I am looking for Korean TV series for my wife. Could anyone pitch a good torrent site to me for this?

Thanks a million.

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u/DruidWonder — 4 days ago

Juicer for a sick person

I'm sorry for this lazy, unresearched post. I am very ill right now from a newly-diagnosed condition. Juicing has been strongly recommended to me by all medical people involved. I have done some preliminary research online. I can't afford a top-tier juicer, so I am looking at low to mid-level priced juicers. Would like a cold press juicer that is good for daily long-term use (at least a year).

The problem I'm noticing in reviews is that many juicers are not good for daily use. Parts break easily, seal rings become deformed, clogs happen. So I am very lost about what to choose. Wish I could afford a Huron or something like it, but it's out of reach unfortunately. I would mainly be juicing veg... carrots, celery, cucumber, beets. Maybe apple. Maybe sometimes ginger root. I would unlikely be juicing very small items like blueberries and raspberries.

Could anyone recommend something that meets my requirements? I guess if it breaks after 3-4 months I could live with that, just to start getting the juices into my body. Ideally longer would be better.

Again, sorry I am only coming armed with entry-level knowledge. I am quite weak and time is of the essence. Thank you sincerely ❤️

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u/DruidWonder — 4 days ago
▲ 12 r/ostomy

I'm 41 M. Been an ulcerative colitis patient for 10 years. Recently diagnosed with colon cancer, early stage. Likely looking at a total colectomy as the solution.

I'm having a really, really hard time getting my mind around the idea of an ostomy. I know it's needed to save my life and I basically have no choice at this point. I just feel like I can't psychologically handle it. I spent years managing my UC to avoid this and now it's happening anyway. I've been crying a lot and I am just scared overall. I want the cancer pain to end, and colectomy will get rid of both cancer and UC so I know my quality of life will improve in that sense. But I have been reading a lot about ostomy experiences and it seems very mixed.

Some unique considerations. Please please address my ignorance or just tell me the realities. I need to know.

  1. Before all this I was a model, lots of shirtless work etc. Having an ostomy will pretty much end most of my future opportunities. (It will, I already checked.) Are there any other lifestyle things that will be totally off the table once an ostomy happens?

  2. I swim (ocean and pool) a lot, as well as sauna and hot tub. I'm not even sure how these will be possible with an ostomy. I also weightlift and bodybuild. Generally I am a very sportive, active person who sweats a lot. Not sure how that works with things like glue and powder.

  3. International travel on airplanes. I'm tall and usually fly economy. It was already difficult, now I don't know. I hear that air pressure changes are a big problem with ostomies.

  4. Sleeping habits. I'm already a difficult sleeper and a side sleeper exclusively. I am not looking forward to figuring out sleep with an ostomy, let alone sleeping in the same bed as my partner.

  5. I have very sensitive skin. Can't imagine that putting glue on my body is not going to cause problems.

  6. General grossness. Smells, leaks, sounds. I just... have no idea. Social impacts, people's judgments of me, etc. I am not sure yet if a j pouch is a consideration. I am still awaiting a full consult about all this, I just know total colectomy is on the table.

Please be kind. I'm sorry if my questions may seem shallow given I have a clear chance to survive a serious disease. I am in a state of trauma now and I am also terrified. I live in a country that has euthanasia available for cases like mine and I won't lie, it's in the back of my mind. I have asked my doctor for a mental health referral. But what I mostly need now is balanced opinions from people with ileostomies to help me get a reality check. I don't want sugar coating but I also need to know if I am blowing this out of proportion. I am scared of the surgery, recovery, lifestyle adjustment, seeing my body in this new way, etc. It's just so much.

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u/DruidWonder — 9 days ago

I have ulcerative colitis (pancolitis) and for months now I thought I was just having a stubborn flare. Well I suddenly had sharp pain on the right side thinking it was appendicitis. Low and behold the ER did a CT and colonoscopy and found out I have stage 1 colon cancer, right at the cecum.

It's all contained in the colon and we are still waiting for the pathology report. But the preliminary talks are about a total colectomy instead of a resection and I am absolutely terrified of losing my entire colon and having to live with an ostomy bag. I'm only 41. On the other hand, if I get my whole colon removed it will "cure" two diseases at once: ulcerative colitis and cancer. They haven't delivered this treatment plan to me, I've just been reading a lot and I'm assuming this will be the way things go. The cecal tumor hurts like hell and is already circumferential, spanning the full circle of colon, threatening to form a stricture. It is also inflamed by bacteria requiring constant antibiotics. So obviously that part has to go. I just don't understand why, with UC, resection is not an option. I do have a lot of pseudopolyps in other parts of the colon (not the rectum), but I don't see why those can't be cleaned up, the cecum resectioned, and I get to keep my bowel.

This is terrifying. It's a lot to process.

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u/DruidWonder — 9 days ago