Newly diagnosed

LeeColonCancer2021
LeeColonCancer2021 Member Posts: 22 Member
edited October 2021 in Colorectal Cancer #1

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!

«13

Comments

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    Can tell you about the

    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

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited October 2021 #3
    Welcome to the forum

    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

     

  • rblakeward
    rblakeward Member Posts: 7 Member
    Your Journey

    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.

     

     

     

     

  • DanNH
    DanNH Member Posts: 184 Member
    edited October 2021 #5
    I don't know your parents but

    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...

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    Support

    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
    LeeColonCancer2021 Member Posts: 22 Member
    edited October 2021 #7
    Thank you all for the advices!

    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!

  • LeeColonCancer2021
    LeeColonCancer2021 Member Posts: 22 Member
    > Can tell you about the

    > 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.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited October 2021 #9
    It will all go well

    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

  • LeeColonCancer2021
    LeeColonCancer2021 Member Posts: 22 Member
    edited October 2021 #10
    Thank you very much, Trubrit!

    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;)

  • LeeColonCancer2021
    LeeColonCancer2021 Member Posts: 22 Member
    edited October 2021 #11
    Thanks for sharing your story

    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.

  • LeeColonCancer2021
    LeeColonCancer2021 Member Posts: 22 Member
    Thanks, DanNH!

    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. 

  • LeeColonCancer2021
    LeeColonCancer2021 Member Posts: 22 Member
    edited October 2021 #13
    Thanks, Sandia!

    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:)

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    edited October 2021 #14
    Ditto

    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.

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    edited October 2021 #15
    You wouldn't believe the

    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.

  • LeeColonCancer2021
    LeeColonCancer2021 Member Posts: 22 Member
    After Surgery

    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
    Trubrit Member Posts: 5,796 Member
    Super update

    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

  • SnapDragon2
    SnapDragon2 Member Posts: 714 Member
    edited October 2021 #18
    I am numb on the right side

    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.

  • rblakeward
    rblakeward Member Posts: 7 Member
    edited October 2021 #19
    Scrotum

    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

     

     

     

  • darcher
    darcher Member Posts: 304 Member
    That was quick
    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.
  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    edited October 2021 #21
    Misc.

    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.