Differences In Rectal Cancer Treatment | Stage 3 Survivor Amy

Is cancer treatment the same for each person if they're diagnosed with the same stage and type of cancer? Not necessarily. I chat with Amy, another stage 3 rectal cancer survivor that had a treatment plan that differed from mine, from the type of surgery she had, the type of adjuvant chemo she did, and preparing for her ileostomy reversal surgery by doing stoma irrigation.
⏱️TIMESTAMPS⏱️
0:00 Intro
0:45 Amy, before cancer
1:39 Amy's cancer symptoms and her colonoscopy
9:00 Amy's diagnosis
11:13 How our treatment plans differed
15:35 Seeking out a different surgical opinion
25:55 Stoma irrigation
32:42 How often she irrigated and if it helped post-reversal
35:11 How we met
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My most popular videos
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💩My Ileostomy Reversal Experience: • My Ileostomy Reversal ...
💉Getting a Port Placed for Chemotherapy: • Getting a Port Placed ...
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[@arezootaghavi4250]

I was diagnosed with hemorrhoids also at 38, but it was rectal cancer. My tumour was 6.5 cm . I started with chemo/radiation then chemo through IV and I responded very well to those treatments and my tumour shrank to 1.5 cm, but unfortunately it was very low. I then did brachytherapy which cleared the remaining. But unfortunately I had a recurrence shortly after and since it was very low the surgeon had no way of saving the sphincter and I ended up with a permanent colostomy . It is a big change to deal with, but I’d like everyone to know that it is not the end of the world and you can still live a normal life with a stoma :)

[@SurvivorJelena]

Yes, you can still live a full life with a colostomy! I’m glad to hear it sounds like you’re adjusting pretty well to it.

[@christophervargas7422]

Ive got rectal cancer currently on chemo. And im so stared staged 4.I hope I'm as lucky as your 2 were🙏

[@happydays59]

This has been the best, honest channel for me to get the information I'm craving as I start my rectal cancer journey. I need all the good bad and ugly. Thanks again! 💙💙

[@SurvivorJelena]

Happy to help! Good luck 💙

[@tammyslaughter9587]

Interesting the different relationships we can have with our physicians, and it’s always good to get 2nd opinions. When I was diagnosed with stage 4 colorectal cancer I didn’t wait for my doctors to tell me the chances of sphincter preservation, I asked them what the plans or chances of keeping my sphincter intact and part of the plan was the radiation to shrink the tumor enough with the radiation to hopefully obtain clear enough margins to surgically keep the sphincter intact. I had excellent surgeons not only with the colon resection and ileostomy but also an exceptional specialized hepatobiliary surgeon to remove half of my liver, my gallbladder, and 27 lymph nodes. I had an ileostomy for six months and frankly even if the irrigation system were offered I don’t think there is anyway I could have gotten the tube inserted enough into my stoma because of the ileum anchor to allow enough fluid to go into my digestive system. Fortunately it was not needed anyway because after the ileostomy reversal it took no time for my colon to wake up and start functioning properly without all of the added stress of trying to irrigate my intestines for six months. Of course everyone is different. That was almost 8 years ago and my sphincter and intestines work fine. Thanks for the information!

[@Brvfan2012]

I had an amputation on my leg with a huge tumor that took my whole leg. A few weeks later I had a colonoscopy because a small spot of blood appeared in my poop. They did the colonoscopy and from behind I hear a voice. Ms. Kellettyou have rectal cancer. That was the length of my conversation with the a doctor about my second cancer in a month. I had no support system to help me decide what to do. Actually no one discussed what option I should take. I had just had a total leg amputation and I was not able to think of anything. Anyway I am on my way in 3 weeks with a surgeon. Basically my choice was do nothing or go to this surgeon. My person who was driving me was only wanting to take me to this surgeon and I have no other means of transportation so wish me well with this surgery

[@Brvfan2012]

PS. I am 75 years old

[@123hunden123]

Thank you for all information. I found you on you tube after I got my colorectal cancer diagnosis in September 2020.. I have a permanent colostomi and in Norway where I live there is not so much you tube info about this. so you became a hero for me at this time and still is . excuse my language as engelsk is not my native language.

[@SurvivorJelena]

You’re welcome, happy to help out a fellow cancer patient 💙 Your English is good, WAY better than my Norwegian 😅

[@ashleyh6131]

Amy u are amazing I also was hand sewn very close to having a permanent bag I wanted to do irrigation but my surgeon didn’t do that I had a wonderful surgeon in Winston Salem North Carolina I had rectal cancer 2 years ago at 40 I have been so fortunate these videos helped me so much it really helps to know someone going thru similar stuff and is doing great Jelena I also felt was my guide watching your videos made me feel like I was gonna be ok thank you

[@SurvivorJelena]

Thank you! I hope you’re doing well 💙

[@endspeciesism]

I might be a bit partial but I really enjoyed this video. The dialogue and flow was exceptional! I have watched all your videos with my Wife Amy and I wanted to thank you for the information you put out to people. I have really learned a lot from your videos as her caregiver.

[@SurvivorJelena]

Happy to hear you approve 😉 💙

[@michaelsims8995]

Thank you for making these videos, they were a great resource when I was first diagnosed. I was diagnosed with stage 3 rectal cancer in March of 2021 and just had my take down last week. I had a different treatment program that started with 8 FOLFOX infusions over a 4 month period, then 5 weeks of Capcitabine/Radiation, then a Laparoscopic LAR with Temp Ileostomy followed by an Ileostomy take down 8 weeks later.

[@SurvivorJelena]

Happy to help you get through such a difficult time in your life. Hope you’re doing well today and are cancer-free 💙

[@mariaholovach529]

Thanks for making this video. I am Stage 3 and have yet a slightly different experience and had never heard of the irrigation! I have a few more months of chemo and then reversal and have been nervous about reversal. Glad to see you both thriving!

[@whitedove6191]

Looking forward to my reversal surgery here in a few weeks. So excited. No talk of irrigation as of yet. I am here in Michigan also with one of the highest rated colon surgeon. He is awesome and communication is very good. He and his surgical team out me out of bed and walked me all the way down the hospital hallway and back the morning after my surgery. They called me a model patient. Must be because I have been a RN for 45 years and happened to work the ostomy floor for 5 years so I knew quite a bit going in to this. Wasn't bad enough that I just had a mastectomy in Sept. 2020 with stage 2 breast cancer. My rectal cancer was a t3n0 and my surgeon does his reversal at 16 weeks. I am going on week 14 this week. I just want a full nights sleep! I know I may have to wait until my bowel learns to handle food. Thank you for your videos I learn a lot. Packing 2 rolls of soft toilet paper when I head to the hospital!

[@SurvivorJelena]

Oh my goodness, 2 separate cancer diagnoses!?! I’m so sorry. I hope your reversal goes smoothly and you can get that full night of sleep soon 💙

[@edgrabousky9995]

I’m so jealous of Amy’s surgery! I also had the irrigation treatment. It I had the LAR surgery and 8 cycles of chemo. Now I’m suffering from peripheral neuropathy in my finger tips and feet. What a great informational video. Thanks to you both.

[@deebee4817]

This was an excellent interview. Thank you.

[@TSP549]

Great account and history of Amys journey ! I was just told Stage 3 RC yesterday . CT next Tuesday. I will be watching your videos Jelena for information and stories. Thank you.

[@peckhammer]

Thank you very much for sharing your story. My treatment was also done via a team approach, and a benefit is that different people on the team have different opinions and advice that can help you make decisions. For example, one team oncologist told me about the possibility of a watch-and-wait strategy versus surgical resection if it looked like I had a clinical complete response after radiation/chemo. I then talked to the surgeon, and she said she was not convinced by imaging that the result was complete. I suggested that we wait three months so that I could focus attention on work. She made it very clear that she did not think that was a good idea. Turns out she was right. After surgery they found that the tumor itself had a clinically complete response (no cancer), but I was at a more advanced stage than they had thought based on lymph node biopsies done during surgery. I was stage 3, not stage 2.

[@briannumme9337]

You, and all of the other cancer patients, are brave and strong people! I’m glad to hear that you felt that there were other doctors and treatment options available. And that you had adequate healthcare. Best of good health to you!

[@janninecarter6970]

Yes important to get a second opinion my mum's cancer was palliative treatment on NHS but she went to a private surgeon in London and he removed her cancer

[@Joe-lz7lv]

Thank you so much for your story!

[@LeLa1ful]

Thank you so much for sharing!

[@SurvivorJelena]

You're welcome 💙

[@michelledoliveira9299]

blessings 💕

[@sheilagoos645]

I have stage 3 rectal cancer and am here in Germany. I am part of a study at a university. I had 30 radiation treatments and 2 concurrent chemo treatments of FOLFOX (neoadjuvant). After a 3 week pause, I am having 6 intense chemo treatments and THEN the decision will be made on surgery after I am restaged. I couldn't tolerate the heavy doses of Oxaliplatin, so it was eliminated after two attempts. Thank you so much for sharing your stories.

[@SurvivorJelena]

Thank you for sharing. The Oxi is definitely tough. I hope you have a good response to the treatment. 🤞🏼💙

[@shapienails3067]

I learned to tell doctors to break down their science talk/terms in smaller understandable language for a person that does not have a doctoral degree. In other words Dumb it down .. a person should not feel stupid .. No question is wrong, it's your body your right. What makes me the maddest is doctors coming in after a procedure to tell you/explain what they found etc.. when you're still groggy. Yes, another person with you helps, but if they don't know science stuff .. they will be clueless too. I've been known to even tell them, I'll be calling them when I'm recovering more at home. Bring a piece of paper to appointments with questions ask the most important first. Some doctors are busy and will only answer a couple .

[@lewie45]

I’ve had colonoscopies since I was in my early 30’s. My doctor at the time was wonderful in not blinking at my age, but looking at my family history to deem it necessary. I have gone regularly for them, and was just diagnosed this past June with Stage 3 colon cancer. A colonoscopy never detected it though and I had no symptoms until my appendix ruptured.

[@debraharding8007]

I'm glad you explained about hemmroids blood like a crime seen!!!! I'm experiencing same as you and I'm being ask if blood is black??? I also took and showed pictures!!!

[@hollyyoung649]

I'm also stage 3, I did 6 rounds of Folfox (was supposed to be 8, but I had a bad reaction on the 7th round), 28 sessions of chemo radiation with Xeloda, and now I am having surgery next week, an open LAR surgery with a transverse colostomy which is hopefully temporary.

[@SurvivorJelena]

Wow! That’s interesting you were ok for 6 rounds then had a bad reaction on the 7th. I hope surgery goes well 💙🤞🏼

[@elainedepiero7405]

I would also like to know how Amy’s surgeon from Michigan was as mine is low and have been told I need an apr

[@sheilagoos645]

During my Oxaliplatin treatments I wore frozen gloves and socks as well as sucked on ice chips to prevent the peripheral neuropathy. It worked for me. You can buy them online.

[@SurvivorJelena]

I’ve heard of quite a few people that iced, and had success for a few treatments.

[@Melly4real]

Hi i would be curious as to what juice you could recommend to cleanse the lymphatic system?

[@SurvivorJelena]

I’m not a doctor, but to me anything that has “cleanse” in the name is a marketing gimmick. Our bodies are perfectly capable of “cleansing” themselves naturally.

[@foggy7154]

Is that picture of the bleeding the photo she took?

[@YaoEm]

I'm also diagnosed T3N1, and did CAPOX similar to Amie (not FOLFOX). I just got reversed Jan 31, 2022. My question is, were you able to indetify why the difference in Chemo treatment? What was the reason for doing CAPOX versus FOLFOX?

[@SurvivorJelena]

No, I’m not sure why the difference. I haven’t read into the details to see the pros and cons to CAPOX vs FOLFOX.

[@roch145]

From what I’ve read CAPOX may be associated with improved disease-free survival vs FOLFOX. Though CAPOX has higher toxicity which can result in shortened treatments. I received FOLFOX and had a good tumor response. Your oncology team looks at a variety of variables and picks what they believe to be the best approach. So there must have been factors in your case that led them to pick CAPOX over FOLFOX.

[@sallycampbell7709]

I can’t wait to color my hair like you when my hair grows back. It’s so pretty as are you! I start 6 mo of chemo today 🌺 🧜‍♀️

[@adinahwithkaden]

They never used the word cancer with me either. I saw it in my medical record (cancer of the lung).

[@sharonscancerjourney8927]

I wished you all had talked on how hard Radiation is on the Rectum,,, shew I was in pain all the time,, inflmammed, sitz bath so much of time or in shower!

[@SurvivorJelena]

Yes, the radiation was definitely painful. I talk about it a bit more in the video I did early on about how radiation was for me: kzbin.info/www/bejne/fWi2pqOgYtOef6c. I’ll go in more detail in some videos coming up in March too.

[@peculiarsoutherngrandma5121]

Hi Sharon, just subscribed to your channel and am praying for you dear.

[@trevormo950]

Who was Amy's colon rectal surgeon in Michigan? I live in Michigan and I'm looking for a second opinion.

[@elainedepiero7405]

Yes interested in finding out who Amy’s surgeon in Michigan was thanx

[@tammyslaughter9587]

Could you please clarify what you mean when you said “because the veins are quite a bit smaller when you get the port placed?” I just don’t understand what you mean by this statement and very curious.

[@SurvivorJelena]

The veins in your arms are smaller than the ones closer to your heart.

[@tammyslaughter9587]

@@SurvivorJelena Thank you for your response and spreading very good information. As a medic and survivor of stage 4 colorectal cancer and now dealing with stage 4 blood cancer with a port I’m very aware that the peripheral veins for IV’s are smaller than the large vein that a port-a-cath is placed. I just didn’t understand her comment “ because the veins are quite a bit smaller when you get the port placed” didn’t make since to me in the context she was talking about. I now think she meant the peripheral veins are smaller than the large vein the port is placed which now makes since. Again thanks for doing what you do to spread awareness and information.

[@SurvivorJelena]

Oh my, that sucks you’re dealing with another stage 4 cancer diagnosis. Wishing you the best 💙

[@tammyslaughter9587]

@@SurvivorJelena Yes it does, and thank you so much! As a fellow colon cancer survivor I’ve been NED from the stage 4 colorectal cancer for eight years. I’ve been told that the current blood cancer has nothing to to do with the previous CRC and was considered cured after five years. Blood disorders run in my family. I just wanted to clarify so others going through colon cancer are still very hopeful that they can be cancer free for many years. I wish you peace, and health! ❤️

[@SurvivorJelena]

@@tammyslaughter9587 that’s awesome you’re 8 years NED from your stage 4 CRC diagnosis! 🥳 Hopefully you can say that one day about your blood cancer diagnosis too. 🤞🏼

[@moniker1111]

How do people pay for all these procedures? How do people help themselves with limited insurance?

[@SurvivorJelena]

Insurance first, then in the US a lot of people raise money through a Go Fund Me to help pay for treatment.