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Newly diagnosed

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Hi All,

Just want to say hi and listen to your advices!

I'm in my 30s, and never thought I would have a cancer until one week ago, I got really bad bloody diarrhea with colon obstruction.

After CT scan and a colonoscopy, we found one big mass in the sigmoid colon that nearly blocked lumen. Then another large mass between sigmoid and descending colon with a few smaller polyps. In between two tumors, there are a segment with ulcers and wall thinkening and mild srrounding stranding. The biopsy pathology confirmed the cancer for at least one mass and not sure for the other big mass. The right part of the colon is mostly ok, with 3 <5mm polyps removed during colonoscopy.

The blood CEA is 4.8. Somewhere not too high but above normal a little bit.

Fortulately, the CT scans and bone scan have ruled out obvious metastasis transfer to lung, liver, bones and other organs. And no other abdominal organs or lymph nodes have shown any abnormal. However, they are not sure if the blood and lymph nodes would be affected until the colon segment and surroundings are removed for pathology.

It also ruled out genetic defects like Lynch syndrom.

The doctor clinically diagnosed me as stage 3 colon cancer, as there are multiple tumors in that area, so there is highly possible some way the cancer can spread regionally.

The colectomy and resection surgery with laparoscope is scheduled urgently on this Wednesday. as it says the colon is almost blocked by the tumor, leaving less than 1cm to pass the stools. The plan is to cut most of the left side of the colon and maybe top 1-2cm of the rectum, and then reconnect the rest. Depends on the final pathology findings, I will be likely given chemotherap.

To be honest, my feeling are pretty weird. It all happened in a week, a very short and busy week. I don't feel fear, anger, sadness or ignorance of having this cancer, at all. I have spent nights to read many articles, medical papers and cases on the Internet, and I know this is not the end of the world, and there is still a good chance to even cure this.

I have been hiding this from my parents and other people, as they can't visit me due to COVID boarder restriction. I don't want them to be worried until the time comes. So I assume this is the forum to talk with the right people:)

However, I think what keeps me awake at night is the pains the treatments (surgery/chemo) would bring and those scary things like having a stoma for either short-term or life-time. I mean, knowing it logically is one thing, but facing it emotionally is another thing, right?

Here are some of my questions:

- how painful the surgery recovery will be? I have never had any surgery before. This part scared me a lot!

- is it common to have multiple cancerous tumors in the colon? 2 big masses with ulcers and <10 small polyps nearby?

- how crazy is the life with stoma like? I probably will have one, at least temporarily for months.

please let me know any other tips!

Many thanks!

Real Tar Heel
Posts: 265
Joined: Nov 2019

Can tell you about the surgery. The recovery time for laproscopic surgery is a few days now. They will kick you out of the hospital bed ASAP. lol. It's not so bad as far as pain goes. Enjoy your medication and relax.

It is increasingly common for people to have III CRC, sadly. You are quite young to be experiencing it, but the average age of onset lowers each year it seems. I think the number of tumors found depends on when you catch the disease.  Obviously if doctors find it early, there are only polyps to contend with. If they find it later, there can be tumors and more. So in your case at III it is not uncommon to have multiple tumors.

Glad that you don't have to have a complete colectomy, and welcome to the forum

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

> Can tell you about the surgery. The recovery time for laproscopic surgery is a few days now. They will kick you out of the hospital bed ASAP. lol. It's not so bad as far as pain goes. Enjoy your medication and relax.

Yes, I was told the hospital stay should be around 5-7 days depends on how the surgery is done and how I recover. Hydromorphone will be given for pain management. I remember its crazy dizziness back in the days of a bad trauma experience. Probably, that was why I fear the pain that much.

> It is increasingly common for people to have III CRC, sadly.

I think some polyps must have been growing there for years, but I was never asked to do any colonoscopy. My family doctor knew I had a bloody diarrhea drama last year, but I had fever and infections as well. They thought that was caused by a bowel infection. I really wish I had insisted to do a colonoscopy so I don't see Stage III as today.

> Glad that you don't have to have a complete colectomy, and welcome to the forum

The surgeon says they will keep my colon as much as possible, but it will be decided once they see the situation inside. There is still a low chance to directly connect my small intestine to the rectum with all the colon removed.

Real Tar Heel
Posts: 265
Joined: Nov 2019

You wouldn't believe the things they came up with for my diagnosis. I saw three doctors before one suggested a colonoscopy. I probably could have avoided IV, was actually stage II for one week, lol. Anyway, I have read that most people see several doctors before being properly diagnosed, so I wouldn't feel too bad about that. However, it must change, docs should be less reluctant to think colon cancer.

Trubrit's picture
Trubrit
Posts: 5530
Joined: Jan 2013

You are on the road that many of us here, are travelling, some of us as patients some as the caregivers, who travel the road which is just as frightening and almost as physically traumatic as the patient.

Your reactions are standard, and there will come a time - probably during surgery recovery, when it will hit you like a ton of bricks. Your emotions may be all over the place at that time, but its all par for the course. 

I cannot answer your questions about the stoma, as I was lucky enough not to travel that route, but I did have a blockage which requred immediate - though not as immediate as I would have liked - surgery. 

My surgery on the other hand was open, thus the recovery was somewhat different that what yours will be, if it is keyhole.  All I will say about surgery is 'listen to your surgeon' if he says 'Don't Do.....' then you don't do it.  You can start feeling great on the outside, long before the insides are healed, so if the surgeon says don't lift until six weeks, then don't lift.   I suffer to this day - seven years from my liver ablation, becasue I thought my body was ready, when in fact it was just my head that was ready. 

You will surprise yourself. If you take it one step at a time, you will find that you can handle everything that is thrown at you, and handle it well. 

Here is a tip for post surgery. WALK! When they tell you to get out of bed, do it, and walk, walk, walk.  This is most important if you ended up having open surgery, but with laparoscapy surgery, it won't be as painful, but just as necessary. 

Drink lots of fluid - which of course we should be doing in any case. 

Walk, drink and follow the Doctor's orders. That is my advice for post surgery.  

As for the whole Cancer thing, be as POSITIVE as you possible can - and accept that those darker moments will hit you. I told myself that I could be all weepy and self-sorry for 10 minutes a day, then it was time to buck up, and be happy. 

Visit us here on the forum and we can help you through. 

Telling your family is your personal decision - for me, I told EVERYONE, and everyone was either praying or sending those good loving vibes. That really, really helped me.  As a parent, I would most definitely want my boys to tell me.  But, that is just how I feel. It is your life to make your own decisions with. 

Good luck with the surgery. 

Tru

 

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Thank you very much, Trubrit!

> Your reactions are standard, and there will come a time - probably during surgery recovery, when it will hit you like a ton of bricks. Your emotions may be all over the place at that time, but its all par for the course.

I'm trying to distract myself these 2 days before the surgery. I've read enough things and I know there is nothing else I can do from my side.
I'll see what that will be tomorrow afternoon when this is done:)

> My surgery on the other hand was open, thus the recovery was somewhat different that what yours will be, if it is keyhole.  All I will say about surgery is 'listen to your surgeon' if he says 'Don't Do.....' then you don't do it.  You can start feeling great on the outside, long before the insides are healed, so if the surgeon says don't lift until six weeks, then don't lift.   I suffer to this day - seven years from my liver ablation, becasue I thought my body was ready, when in fact it was just my head that was ready.

Thank you very much for this advice! I will definitely remember the instructions from the doctor!

Actually, after seeing your message here, I did all possible heavy-lifting works (e.g. winter house maintenance) in the next 6 months this afternoon.

 

> Here is a tip for post surgery. WALK! When they tell you to get out of bed, do it, and walk, walk, walk.  This is most important if you ended up having open surgery, but with laparoscapy surgery, it won't be as painful, but just as necessary.

Yes, this is important to let gravity pull the organs, so they find the right place to grow back. There will be adhesions, and it needs the walk and gravity to shape it correctly.

I heard the patients are encouraged to get off the bed one day after the surgery for this purpose. Will see. 

 

> Drink lots of fluid - which of course we should be doing in any case.

Absolutely. I was on clear fluid food for 2 weeks now. I can't imagine I could survive with only drinking apple juice and clear BOOST! I feel water has been the only thing I'm drinking and I drank a lot

 

> Telling your family is your personal decision - for me, I told EVERYONE, and everyone was either praying or sending those good loving vibes. That really, really helped me.  As a parent, I would most definitely want my boys to tell me.  But, that is just how I feel. It is your life to make your own decisions with.

This is a tough situation in my family. My parents are not healthy themselves with heart and other conditions recently. I don't want to stress them anymore. And I feel it might not be a bad idea until my situation and their situation get settled a little bit. 

Luckily, I have a fiancée who didn't give me up and has been supporting me very positively. We were hoping to get married in the next few months and now we got this cancer here. I really appreciate what she has been doing to me, and I don't feel I will fail her going through this process;)

rblakeward
Posts: 2
Joined: Sep 2020

I did not have the obstruction - but had the colectomy laproscopiclally in August 2020 - then statrted Chemo 4 weeks later -  the surgery was not a huge ordeal , I was out in four days and walking pretty quickly - YES on some PAIN meds

 I was Staged  III - B I had 2 lymph nodes out of 16 removed affected - so  I did 10 rounds  ( of 12 scheduled ) of FOLFXO - started that 34 days after the surgery  -  it's tough but it will go by quicker than you realize.   

I am more than a little more than a year past my surgery and chemo start date - and begining to feel more like my old self.

Keep asking questions , everyone on this forum has an amazing range of experience  and knoweldge to share - it was a godsend to me to verify all the other materials that I was reading.

 

 

 

 

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Thanks for sharing your story!

I know the surgery is just the beginning. After the pathology reports come out, I probably will go through chemo as well.
I heard about this FOLFOX cocktail (vs CAPOX/XELOX), but I'll probably only worry about it after passing this surgery phase:)

And I will definitely have more questions to ask down the path.

DanNH's picture
DanNH
Posts: 161
Joined: Feb 2021

I don't know your parents but I can tell you that as a parent you are probably not shielding them from anything. They will probably sense that something is wrong and the anxiety of guessing or trying to figure out what's wrong can be worse than knowing the truth. Consider telling them for their sake. I am a caregiver for my wife who is stage 4. When you have cancer everyone around you experiences part of it. They want to help, they want to support you, they want to do something. You will find it a difficult to impossible journey to make in your own. For what it's worth...

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Thanks, DanNH!

My mother had a few complicated health situations recently involving the heart and multiple hormone disorders. I was trying to help her, when I found myself having cancer.

I feel it is probably the worst time I can tell her this news. So keeping this for a short time until her situation and my situation settled down a bit.

Meanwhile, I have a very positive and lovely fiancée who didn't give me up and has been supporting me. I was supposed to give her a good marriage as this Covid pandemic calms down, but now we probably will go through more tests to get there. I won't fail her. 

SandiaBuddy's picture
SandiaBuddy
Posts: 1199
Joined: Apr 2017

I agree with the others, but I just want to emphasize the value of having support while you are in the hospital and when you first come home.  You have not mentioned if you have someone who will be there with you and provide care and support on your return, but from my perspective, that is essential.  At minimum, you will likely need someone to help you to get up and out of bed post surgery--and there are a million other tasks and comforts a friend can provide.

Like Tru, I was very open about the cancer and surgery, and it worked well for me, but we all have individual considerations.  From my perspective, the surgery was the easiest part of the whole process, but I do not know if that information will be comforting at all at this point in time.  Taking it one step at a time is probably the best thing you can do at this point.  After the surgery, you will have some time to heal and collect your thoughts before you proceed with any additional treatment.  Best of luck to you.

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Thanks, Sandia!

> I just want to emphasize the value of having support while you are in the hospital and when you first come home.  You have not mentioned if you have someone who will be there with you and provide care and support on your return, but from my perspective, that is essential.  At minimum, you will likely need someone to help you to get up and out of bed post surgery--and there are a million other tasks and comforts a friend can provide.

I told this to a close friend and my fiancée. I worried a lot about what would be her reaction to this news, but she has been very positively supporting me and didn't give me up at all. We have been living together and were hoping to get married but couldn't due to the pandemic. I think I'm so lucky to have her, and I can't let her down during these treatments. 

In other replies, I mentioned my mother's health situation. I'll keep this from her once my situation and her situation settle down.

 

> From my perspective, the surgery was the easiest part of the whole process, but I do not know if that information will be comforting at all at this point in time.  Taking it one step at a time is probably the best thing you can do at this point.  After the surgery, you will have some time to heal and collect your thoughts before you proceed with any additional treatment.  Best of luck to you.

Thank you! The surgery is coming in hours. I'll see how this easiest part will be like:)

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Hi All,

Thanks for replying to me! Sorry, it was two busy days and it was hard to type with IV attached. It means so much to me reading your replies and hearing your support! 

I'm preparing for the surgery tomorrow with another half PegLyte to go. Hope everything goes fine!

Trubrit's picture
Trubrit
Posts: 5530
Joined: Jan 2013

Never worry about replying immedietely. We all understand that the journey makes things difficult. 

Good luck tomorrow, we are routing for you. We will await patiently for your report on surgery. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 1199
Joined: Apr 2017

Ditto to everything Tru says (except for the positive attitude. . . )  Everyone here is on your side.  Take your time, get better, and touch base when you can.  I wish you all the luck in the world with your surgery.

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Just want to update my status!

The colon resection surgery was on Oct 20 and it was successful with left colectomy. It starts around 8:30am and ends at 2:30-3pm. Two large tumors were removed with laparoscopy as well as an 3-inch incision to take out the mass. Before the surgery, instead of being pushed in on a bed, I was able to walk into the surgery room myself, passing by the busy corridor with operation rooms, and seeing other patients being operated on. What a sightseeing!  

The doctor said one of my cancer tumors was very large and stuck in between abdominal walls. They would rate that one to be T4 grade. Many lymph nodes were removed and only pathology reports can tell if they're ok. With two tumors 12-inch apart, the doctors said she won't be surprised if more than one lymph node to be affected. So I'll be likely at stage 3C, or in the best case for 2C.

The pain is well controlled. I had really bad side effects and experiences from hydromorphone and ketamin, so I was given some non-opioid options from day 0 to day 2. And then I was on minimum oral pills since then.

At my 30s age, I've been recovering very fast. I could stand up on Day 0, walk around for 10+ laps on Day 1, and pass gas and some stools (not really stool, but greenish things like bile?) on Day 2.
The gas pains were crazily painful from Day 1 to Day 2, and the doctor says no pain relief can solve it until I passed the gas. I was lucky to get it sorted out this fast.
There was also a complication with stomach/bile reflux on Day 1, when I drank way too much on Day 0. I didn't know my stomach was not working, so all those drinks stuck there. After vomiting more than 3 pints (yes, that much) of fluids, I felt much relieved and never got any problem since then. 

I was on NPO (no food/drink) on Day 0-2, and I felt extremely hungry after passing gas. But on day 3, they surprised me by giving me food like eggs, fruits, grilled chicken (really?), mashed potato and etc. It took me 5 hours to eat that since I have been on fluids and NPO for 3 weeks. 

On Day 4, I was discharged from the hospital. They said my incisions had been healing well and my bowel functions were restored.

Emotionally, I think I'm well adapted. There were not many dark moments yet. There are still many unknowns. I'm preparing myself for chemo and other worse cases (e.g. metastasis after surgery).  

Some questions:

  • This is probably embarrassing to ask, but did anyone experience the serious scrotal swelling? On Day 4, I went to Costco pharmacy to pick up my painkillers after being discharged, and they said this will need 30min, so I shopped around for 1.5 hours (yes, I know this is crazy for only 4 days after surgery), and then I found my testicles were bigger than baseball with lots of fluids in there. It was so big that my penis was fully sunk into the swelling mass and I can't find it. That scared me so much and I went back to the Emergency room. After 4 hours, the swollen seemed to get smaller, and I was able to pee. Then I was discharged again saying this is normal after an abdominal surgery where fluids like lymph flow to the lower part of the body. For males, this means the scrotal area. After applying ice for the next two days, they're not back to normal yet but definitely smaller now. I assume it's a piece of good general advice for NOT WALK THAT MUCH after surgery!
    I know this is not a usual topic to talk about Embarassed 

 

  • How many days did you wait until any shower was taken? How often do you take shower during recovery? the doctor says I can go shower after 48 hours of surgery, but there was a large 3-inch incision they said it was glued well. I did a shower on Day 4 night, but still feel uncomfortable doing a shower every day.

  • The incision areas have been extremely itchy inside. It's not like infection, bloated, allergy, or anything bad, but just like the wounds are healing themselves. I have been doing my best to restrain myself not to scratch there. Is there any tip on this itchiness? 

  • Some parts of my belly seem to lose the sense of touch around the incisions. I assume some nerves were damaged due to the incisions.  Is this normal? Does the sense of touch come back later?

  • Is 3 week revisit too late? When usually do you meet the medical team after the surgery or being discharged?

  • I have a low blood HGB around 110 (normal 130+) as well as low HCT, MCH, MCHC, before the surgery and 6 days after the surgery. They say this is common in colon cancer patients. Did you do anything to treat this after the surgery? Any tips? I heard the chemo may worsen this situation, so should I prep this before the chemo starts?

 

The next step is to discuss my pathology report findings 3 weeks later for next steps. Will keep updating.

Thanks for all your encouragement and support!

 

Trubrit's picture
Trubrit
Posts: 5530
Joined: Jan 2013

It all sounds like the normal post surgery, to me - except the swollen scrotum, which I know nothing about; BUT, I have read a few posts on here about the male anatomy taking a bit of a hit, so I am sure some of our male members will pop up and share their words of wisdom.

Oh, and don't worry abuot TMI - too much information - it is par for the course, here on the forum. Hard not to have to talk about things that are not normally part of the conversation. So, don't be embarrased or apologetic, ask away, and the answers will come. 

I think I went back to regular bathing, just as soon as I got the all-clear.  Water is a healer, as long as you don't scub too hard on the area, and dry the incision really well afterwards. 

I remember being shocked at how long I was 'made' to wait after my surgery. I just wanted to get going on things, but yes, three weeks sounds about right. You cant' start chemo until you are healed, and really, there isn't much to do, otherwise...... except worry. 

Continue being good, eating well and loving life.  We will be here for your updates and any other questions that you may want to ask. 

Tru

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Thank you, Tru!

Good to know you go back to the regular bathing. I tried to only take a shower every three days, but I think I should take it more often now. It's just feeling hard to wash with open incisions with visible cuts. Now, that reminds me that even I don't feel pain, this can't heal itself in 10 days. Only time can do the job.

I had a good chat with my family doctor and we are working out a plan to see anything we can do before the chemo starts.

 

rblakeward
Posts: 2
Joined: Sep 2020

Lee 

 

My scrotum was incredibly swollen for a little over a week , doctor said it was pretty normal bruising , twisting , it totally freaked me out as well 

I started chemo 34 days after the surgery , they wanted me to recover beore the next phase , but to not wait any longer

 

 

 

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Thank you very much, RBlakeward!

Yes, it freaked me out! The nurses and surgeon team are mostly female, and when they check on me, they didn't check my scrotum and I didn't ask.
I should have questioned this before I was discharged, but I think it's my 1.5 hours walk in Costco really made it much worse.

I'm so relieved that this swelling could be treated with ice and rest. It was completely back to normal after 3-4 days.

I am meeting the surgeon again on Day 29 after surgery. Hope it's not too late for the chemo to start. 

SnapDragon2's picture
SnapDragon2
Posts: 585
Joined: Nov 2019

I am numb on the right side of my abdomen.  For the itching and healing the plastic surgeon who stitched me up said vitamin E oil mixed with a carrier like coconut oil, aloevera ect will help with healing and less visible scarring.  I have a very thin scar and no adhesions whatsoever.  I contribute this also to IV vitamin C.

For RBC's, eat liverwurst, about 2-3tsp a day is probably enough to pull those #'s up.

Do not take hot showers right now, warm to luke warm is best.  It increases inflammtion.

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Thank you very much, Snap Dragon!

Yes, I'm trying vitamin E oil for incision, and liver-related products for HGB deficiency. They say it may take months to bring the blood HGB and MCV back to normal, and the chemo may make it worse. But seems like 110 HGB (normal 130+) is not that low. I'm working with the family doctor to watch how things go and if any medication should be used.

And yes, I usually take very cool temperature showers every 3 days. Hope it heals fast!

darcher's picture
darcher
Posts: 305
Joined: Jun 2017

I'm from back in the day, so to speak. I had it in 2017. Your first post was the 18th and you've had surgery in less than a week. I guess things have changed. All I can add is you'll go through various emotional and physiological changes. I had a similar outcome in that I was up and about the day of surgery and left within the minimal time. What happens next is key. You may have to do follow on chemo even if the pathology shows no spreading. Mine didn't but I still had to do 4 months of Xeloda just to be sure. Apparently it worked because so far so good but it was a bear and not fun.

Be grateful for the support system you have. They are more valuable than you realize. What you'll find afterwards is some definitive changes in how things work. With me, my digestive system worked like a conveyor belt. If I ate anything I had to go within an hour and more often than not, every 15 minutes or so afterwards for at least 4 or 5 times. That's weird and quite different than the norm. Each person is different so you may or may not have much "difference" to get used to. This is a battle you'll have to endure for a few more years at least and it may cause a permanent lifestyle change or maybe it won't. Get ready for any eventuality.

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Thank you, Darcher!

Yes, the colon was obstructed by two large tumors, and I couldn't do the normal bower movement at that time. They were trying to put in a stenting, but decided not to due to the complexity and damages it might bring. Instead, they put me on a priority list and scheduled this surgery as soon as possible. It was quite busy and quick to go through all scans, tests, researches, procedures, surgery and etc. And that was only in 2 weeks. Now I'm on week 3 after diagnosis (Day 10 after surgery). Can't describe how fast things are changing. 

The pathology report will reveal the key findings that determine how my chemo will be like. All I can do is the healing and patient waiting now.

I have felt some changes in how my digestive system worked as well. I don't feel I need to use the washroom after eating, but if I feel something is about to come out, I have to use it immediately. There is no chance I can hold it like before. The colon and rectum area would be very painful (like 8-9 level pain to me) if I don't.  I assume that's because the 50cm of sigmoid colon was doing that job but now they're gone. So it's been 3 days in a row that I have to get up and use the washroom at 5 am every day. I'll need to figure out how not to wake up in this way in the future.

SandiaBuddy's picture
SandiaBuddy
Posts: 1199
Joined: Apr 2017

I think I took my first shower in the hospital, and stayed with it daily thereafter.  There were no negative effects for me.

I freaked out a bit the first time I touched the surgical scars--and discovered there was nothing behind them.  My approach has just been to leave them alone.  Some people think it helpful to apply some salves, but I did nothing.  The nerves are cut and it is something you get used to.  You are lucky to only have a three inch exit scar, hopefully it will heal well.  I still have pain on the side opposite to the biggest surgical scar, but the doctors just shrug and imply it is one of those surgical mysteries.  The PA, who had a C-section, thinks it is a result of cut nerves.

A three week break from the medical system sounds like a treat to me.  Emergency services are there if you need them, if it were me, I would focus on healing, which sounds like it will come quickly to you.

I had no experience with scrotal swelling, so can offer no advice, but your body has suffered an enormous trauma, it seems natural that there will be some side effects.

The best advice I got was to exercise,  I started walking a few hundred feet and within a week was logging a few miles. Although you may have overdone it at Costco, you might want to try building distance incrementally over the days.  From my perspective, "exercise helps with everything."

Good luck to you.

SandiaBuddy's picture
SandiaBuddy
Posts: 1199
Joined: Apr 2017

Let me preface this comment by noting that there are two approaches to supplements on this board, those who think that you should follow the doctor's recommendations precisely and those who think judicious supplementation is prudent.  I fall in the later group.  You might want to do some research about whether taking cimetidine is appropriate at this point in your treatment.  Also, you might want to have your vitamin d levels tested and consider boosting them with natural sunshine and/or supplements.  There are plenty of old posts on these topics and you can update the research on pubmed.  Good luck.

Real Tar Heel
Posts: 265
Joined: Nov 2019

Doing one's own research is taking a beating these days but I do take supplements based on my reading pubmed, etc. I am taking massive D3 doses and maybe it was helping, could still be. I'm the outdoorsy type when it comes to games, I leave the wood-strewn hikes to my wife, lol, but I do like to be outside and get D3 that way as well.

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Absolutely it is good advice! The D3 has been something not just for colon cancer but many other health benefits. I like outdoor activities and hope to take some hiking trails soon!

At least I'm walking the dog for 2 miles a day.

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Hi Sandia!

Thank you very much for sharing this!

I did some further research. There are quite a few researches from 1990s to this year:

https://pubmed.ncbi.nlm.nih.gov/7736883/ (1995) this one suggested "Cimetidine does not seem to reduce mortality in patients with colorectal cancer, but there seems to be a tendency toward a survival benefit in patients undergoing surgery for Dukes Stage C carcinoma. Results seem to justify trials in this patient category to reveal a benefit of H2 receptor antagonists in adjuvant therapy of colorectal carcinoma." So if this is stage III colon cancer, there is a benefit to taking Cimetidine (H2 receptor blockers, or called antagonists).

https://pubmed.ncbi.nlm.nih.gov/10919677/ (2000) "We found that the cimetidine-mediated down-regulation of E-selectin did not involve down-regulation of E-selectin mRNA or blocking of the nuclear translocation of nuclear factor kappaB, a transcriptional activator of E-selectin gene expression. Because two other histamine type 2 receptor antagonists, famotidine and ranitidine, did not show any similar effect, these actions of cimetidine probably do not occur via blocking of the histamine receptor. These observations support the idea that cancer metastasis can be blocked by cimetidine administration through blocking the adhesion of tumor cells to the endothelium when an interaction between E-selectin and sialyl-Lewis antigens plays a role." So it says the cancer metastasis can be blocked with e-selectin interaction.

https://pubmed.ncbi.nlm.nih.gov/11870500/ (2002) this one says "Robust beneficial effects of cimetidine were noted: the 10-year survival rate of the cimetidine group was 84.6% whereas that of control group was 49.8% (P<0.0001). We found that cimetidine treatment was particularly effective in patients whose tumour had higher sL(x) and sL(a) antigen levels."

https://pubmed.ncbi.nlm.nih.gov/15573918/ (2004) "We aimed to examine the effects of histamine, cimetidine, and ranitidine on in vitro proliferation and apoptosis in two human colorectal cancer cell lines, Caco-2 and LoVo. Results show that histamine (10(-5) to 10(-9) M) had no effect on the growth of either cell line. The proliferation of Caco-2 was inhibited by ranitidine (10(-7) M) alone and in combination with histamine. Cimetidine (10(-5) M) only suppressed the growth of Caco-2 in the presence of histamine. The H2 antagonists had no effect on LoVo irrespective of histamine. We conclude that cimetidine and ranitidine inhibit Caco-2 cancer cells in vitro, independently of the H2 receptor. In addition, both drugs induce apoptosis in the same cell line. Growth inhibition and apoptosis are likely to contribute to the tumor regressive properties of cimetidine and ranitidine in vivo" So this one finds Cimetidine works for some type of colorectal cancer cell lines with other conditions (e.g. with histamine).

https://pubmed.ncbi.nlm.nih.gov/22895966/ (2012) this concluded: "Analysis of the five cimetidine trials (n = 421) revealed a statistically significant improvement in overall survival (HR 0.53; 95% CI 0.32 to 0.87)."

https://pubmed.ncbi.nlm.nih.gov/34439898/ (2021) "High levels of histamine and histamine receptors (HRs), including H1R~H4R, are found in many different types of tumor cells and cells in the tumor microenvironment, suggesting their involvement in tumor progression." this suggests some new direction with a bigger view, not only H2R blocker like Cimetidine, but other subtypes may be related too. further researches will be needed.

I think it would be something I would bring up with both the family doctor and the GI surgeon/chemo teams.

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Thanks, Sandia!

I think by Day 10, my incision is still not healed like a scar. It looks like when the skin heals after a cut, with an obvious opening, but no blood or not deep. That worries me a little bit, but I believe it has made good progress.

I do have similar phantom pains as you described on the other side of the incisions. I don't know why the cuts are on the right side, but my left colons (sigmoid and partial descending colons) were removed. I still feel left and middle pains very occasionally where there should be nothing. Probably the wounds there are not fully grown well.

This morning, there was a time when I trying to get up from bed, I felt a sharp pain that was like something torn apart inside in the lower middle belly button, but the pain was gone quickly and I can't figure out anything wrong from the outside look. I ignored it but hope it won't cause any problem.

The nerve definitely was damaged in my case. I can't feel any touch within a few inches around the exit incision. I don't know if it will heal.

Day 1-3 was about 1 mile a day, but after Day 4, I did quite a few walking, around 3500-5000 steps for around 2-4 miles a day walking our dog. I think that's a good start while the weather is still suitable. 

Annabelle41415's picture
Annabelle41415
Posts: 6730
Joined: Feb 2009

I'm sorry that you had to find us at such an early age, but welcome to our boards.

We all have been through a lot of what you will be going through so you have found the right place to be.  There is an "About Me" page at the top of everyone's picture (if you click on it) that you might want to check it out.  Most people fill their profiles out and can tell you some of the journey that they took during diagnosis and through the treatment process. 

The surgery is sometimes different depending on what they are going to do, and that includes treatment.  Mine was rectal so my treatment included radiation, but your treatment will probably be different than mine.  My surgery lasted 5 hours and was home within 5 days. 

I'm not sure about all the tumors as mine was contained to the rectum. 

Wishing you the best and please let us know if we can help you further.

Kim

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Hi Kim,

Thanks for the advice! Yes, I have filled the "About Me" in my profile and I have been reading other people's. It's great to see you have been free of cancer for 10 years!

I'll patiently wait for my pathology findings to determine what's next for chemo. The treatment for CRC seems to be very common and regulated. There are very detailed guidelines and protocols to follow, and my case would be just as normal as it can treat. 

So I don't worry about the treatment. It's more of the unknowns (e.g. how bad will I react to chemo cocktails and its pains that sometimes worry me:)

Thank you again for the good wishes and for replying to me! It helps me a lot!

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Thank you all for the replies!

It has been a week since I'm discharged, and I have been healing well. Walking 2-4km a day with our dog, getting as much sunshine and fresh air, and sleeping a lot. Eating normal food with a few supplements with Boost and other normal doses of vitamins. 

The scrotal swelling was gone on Day 7. It seems like all back to normal now :P

I have stopped taking any strong painkiller like hydromorphone since Day 7, but still, I'm taking 500mg Tylenol 4 times a day. There are quite a few random not-strong but dull pains on my left and middle abdominal area, where the sigmoid colon was removed. I think it might be still some wounds inside not fully recovered. There was a time when I get up from the bed, I felt there are something torn apart in the middle-lower belly where no incision exists. That was a little scary, but I couldn't find anything wrong from outside.

As it's 10 days after the surgery, I peeled the stitches (which caused quite a lot of itchiness due to my allergy to adherence) as the discharge notes advised ("if Steri-strip tape does not flake and fall off on its own, you may remove them 7 to 10 days after the surgery"), and then I saw my incision was still not fully closed with a deep cut in the skin. I feel uncomfortable and put back the stitch once againTongue Out Hope it take another week or two to really fully close it.

I'm still anxiously waiting for the pathology report, but that should come out in the next week or two. I wonder if I can get a copy before my appointment with the surgeon on Nov. 18.
I know there will be many routes to take with its findings.

Thank you all for the tip and advice! I can't imagine how many things happened in the last 3 weeks. It really helps me to have someone to talk to and learn your experiences on this path.

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Hi All,

Just want to update my status and seek advices. It's been a while.

My pathology took more than 3 weeks to reach me, and finally I have it after the long anxious wait.

What wrote in the pathology:

  • Diagnosis: Sigmoid cancer with 3 adenocarcinoma tumors, 2 high degree dyspasia adenoma, 1 hyperplastic polyp and 6 other non-cancerous polyps. This was why it took more than 3 weeks to analyze and double confirm all 12 of them.
  • The largest 2 of 3 tumors were 6.5cm(2.5 inch) and 4.5cm(1.8 inch), all T3N0M0, moderately differentiated, intact MMR, stable microsatellite. Bad news is they were positive for perineural invasion.
    They could have been growing there 5-10years.
  • The smaller one of 3 tumors was only 0.5cm (0.2 inch), T1N0M0, moderately differentiated, intact MMR, stable microsatellite. However, it was positive for lymphatic space invasion, and high grade of tumor budding (17 buds). I think I was very lucky to remove it at this T1 stage, as it might be more dangerous than the 2 big ones. 
  • Margin negative and the cancer was clearly removed.
  • Surprisingly, even the tumors were huge, none of the 19 lymph nodes examined had cancer invovlement. So I was at Stage 2A.

The doctor commented this is the best scenario I can expect, as clinical estimation was 3B to 3C. Many patient with tumors these much and this big usually got lymph nodes problems.
We booked CEA blood check in 4 months and CT/Colonoscopy in 6 months. 

 

Next step:

The referred oncologist is on vacation this week, so I should know next steps by early next week. As it's at stage 2A, the surgeon says it's in the grey area of giving chemo or not.

There are some high risk factors as written above, like perineural and lymphatic invasions and that high grade budding, but they are still considered very local problem. On statisctics, the recurrance of Stage 2A is below 15%. The chemo probably only will improve my recurrance for 5%~9%, but the chemo will result in quite a few damanges. So the sugeon can't call the pros/cons, and will let the oncologist to decide.

Likely the oncologist will consult my willingness of taking this chemo decision, so I wonder if anyone has been through this can give me any advice!

SandiaBuddy's picture
SandiaBuddy
Posts: 1199
Joined: Apr 2017

If I were in your shoes I would think long and hard about chemo, no matter what the oncologist recommends.  Chemo can be a very crude tool for addressing cancer, often with serious side effects.  It is a highly personal choice and likely warrants researching the issues independently and considering the pros and cons seriously.

LeeColonCancer2021
Posts: 20
Joined: Oct 2021

Thanks, SandiaBuddy!

I read a lot since I replied yesterday. And I could not sleep well with these findings.

I see I have multiple high risk factors: high grade budding, perineural invasion and lymphatic space invasions.

What a roller coaster! I thought I suddenly in a better chance, but seems like not the case Tongue Out

I'll probably start a new thread for high risk stage 2 situation.

SandiaBuddy's picture
SandiaBuddy
Posts: 1199
Joined: Apr 2017

Sleepless nights and hours of research are not unusual at this stage of the game.  The research you do may take you up and down a roller coaster, but is should help you to refine the issues you address with your medical team (and from my perspective, they work for you in helping you to reach your goals.  You dictate the treatment with their advice, not the other way around).  Studies cannot be taken solely at face value--some are old, some deal with very different populations, etc.  Here is an old post about that issue: The Problem with Statistics.  A new thread probably makes sense.  Good luck with all of these issues.

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