New here, diagnosed with Colorectal Cancer and have a few questions

[Kevsmets]

First off, THANK you all for this message forum. Once I recieved the bad news it just felt the internet was a wasteland for further bad news and depressing stats. This community here, just browsing the forum for a few hours, made me feel not so alone and without hope. So big thanks to all who contribute here, you have no idea how much you help even newbies like me.

So here's my current status.... since November last year I noticed trace amounts of blood in the stool. Then around March (when the world shut down due to the pandemic) I started having constipation problems. I chalked it up to anxiety and stress, from work shutting down, an impending move and a baby on the way (she's due any day now) - long story short, when I did see a doc they did an Adoscopy said it was hemorrhoids and gave me cream and suppositories. But I had a worse hunch so I insisted on a colonoscopy.

Fast forward to yesterday, coming out of anesthesia, the doc and my wife waiting for me. He noticed that literally from the anal verge to about 5cm in a circumferential mass and ordered a biopsy. He's pretty convinced it's colon cancer and therefore I have my first Oncology appt this Monday, and recal surgeon appt consult on Tuesday. Shock, sadness, the realization I have a baby girl coming into this world I want to see grow into an amazing human being all raced through me.

So after a sleepless night of searching the internet I couldn't find much about my specific questions I had forgotten to ask my doc. Basically the rest of my colon was clear and clean. The mass I DO have is basically so close to the anus its peaking out. My question is, is this type of tumor more prone to spreading? This also seems the type of tumor that needs the entire anus to be removed because its on the sphincter? I'm so nervous about the staging. I will say only constipation and rectal bleeding have been my only symptoms, the bleeding in Nov, and the constipation in March. Was that enough time for a low rectal cancer to spread. I have no other symptoms like fatigue or shortness of breath. However I worry I waited too long and it'll be my fault for not going sooner because everyone was telling me it was hemmorrhoids.

I have been told its a slow growing cancer so I'm hopeful it hasn't spread. Anyway thanks for taking the time to read this, this forum has been beyond smoothing for me and my wife. Much love to you all?

- Kev

[Lee]

Hi Kev, Sorry for the reason you are here.

I am a 16 yr survivor of stage 3C rectal cancer. Very much alive and kicking. Know there is hope, there are many of us out there.

I suspect you have rectal cancer like me. If am correct, you will probably get radiation prior to surgery. Radiation will help shrink the tumor, helps the surgeon get clean margins. If you do have rectal vs colon cancer, make sure your surgeon is a "board certified colon rectal surgeon" vs a general surgeon. They have the extra training that come in handy when dealing with such a small area. If you do radiation, ask about saving some of your sperm for future children. Radiation threw me into menopause within the first week, but I knew it was going to happen.

The surgeon will request a few tests like a Cat scan, some blood work, and a few other things that will help with staging.

Okay this is my story, remember 16+ yrs ago. A lot of advancements since then. Radiation destroyed most of my rectal muscles, I was tied to the toilet for hours any time I ate. Pleased understand that radiation machine was 3 generations ago. They are able to pin point better today vs 16 yrs ago. Anyway because of the damage, I chose a colostomy bag. I had 2 young children I needed to raise (9 & 11), The only way I was able to be a mother was to not eat anything until I was home for the day, generally around 3 or 4 in the afternoon. I would have done if I had to, butt my surgeon wanted me to see an ostomy nurse. that nurse request BOTH my husband I attend. That was when we learned what a colostomy bag. We both agreed it was my best choice. I'm not saying this is going to happen to you, again a lot of advancement. But that bag gave me my life back & it does not hold me back. I have never had any spread, was actually told I was cured a few yrs back. I was cut open, didn't have a choice. Usually these surgeries today are done lapro today. That helps in the healing process

For the time being, avoid Dr. Google. A lot of information is older and sometime wrong. Ask any questions or voice any frustration here. We do have your back here.

How old are you?

Hope this help some. Ask any questions.

Lee

[roadrunner]

Some general background that may be of use to you:

There are a lot of things to figure out, but there’s time; I was told “nothing will happen for 10 weeks” — these are indeed slow growing, and while risk of metastasis is never zero, you generally have time to assess, pick doctors, etc.

With respect to any possible metastasis, you will likely receive scans (CT/MRI/ and/or PET) which will investigate that. There is a good chance that has not occurred, but even if it has (which would be stage 4), there are many treatments and success stories described on this forum and elsewhere. But stage 4 is a different treatment approach altogether. If your cancer is stage 3 like mine, the treatment course will be more predictable, though there are options. Your rectal tumor is likely to present certain challenges due to its location. Rectal cancer is complicated by the nature and functionality of the structures involved, so you will need the best surgeon you have access to. Also, there are different treatment methods. The main two are (1) chemoradiation (usually the chemo is Xeloda) followed by surgery and (2) TNT, or “Total Neoadjuvant Therapy,” in which chemo (often FOLFOX) is delivered first, then chemoradiation, then surgery. TNT tends to be done more commonly at major cancer centers and research hospitals. TNT can, in approximately 30% of cases, achieve a “complete clinical response,” which is sometimes approached with a “watch and wait” strategy (no surgery). (This can happen with chemoradiation only, but it is less common.) There is a thread on this board about that. It may be of interest to you because of the location of your tumor will likely create surgical challenges which may increase morbidity and complicate your recovery. TNT does also appear to reduce the risk of metastasis if none is detected initially. Generally, chemoradiation will be used to shrink the tumor to provide better surgical options.

Treatment of rectal cancer is a bit of a long haul, and I at least favor learning more about it so you can best identify the right cancer center, oncologists (radiation and medical), and surgeon (very important for you in particular). I should add that I have done lots of chemo and radiation, and neither was a blast but they were doable. Radiation in particular was relatively easy to tolerate (technology has indeed advanced; but again, you need to be informed about methods, machines, and oncologists).

Stage 2, which also seems possible in your case, is usually a bit simpler and sometimes involves less chemo.

That’s super general stuff, and obviously I at least do strongly favor learning about your disease and its treatment options, including whether you need (and want to) at least talk to major cancer centers to understand your options better. Also, while I totally respect the “Google is not your friend” advice, if you can keep in mind that scary stats and possibilities are (1) based on old data (and things have improved a lot) and (2) generally applicable only, and your outcome will be determined by your specific situation, your biology, your care, etc., I think education is a great thing. This is a complicated disease, and there are many options as to treatment.

For context, I had TNT, and have been told I have a complete response, but am still pending final surgical assessment to see if I need surgery.

Hope this helps!

[roadrunner]

Sorry, should have added — the chemoradiation-then-surgery course (not TNT) is often followed by more chemo (adjuvant chemo).

[beach sunrise]

Hi kev, if they do surgery first and you know chemo is coming maybe get with Nagourney Cancer Institute to have your live tumor tested against different chemo's and chemo combo's, If they decide chemo/radiation first before surgery ask for biopsy of live sample be sent to Nagourney. You have to contact them yourself and set it all up and make sure the surgeon knows ahead of time what is expected by pathology to get it sent overnight. I had my tumor tested from surgery but Nagourney called and said radiation did its job and not enough cells to test. I wish I had known about this test before chemo/radiation so I could have had a sample sent.

[michelle c]

Hi Kev,

Welcome, you will find lots of support and assistance here. I know I did. I remember all too well how terrified I was, especially in those early days. It’s terrifying to learn you have cancer. I was diagnosed in 2009, with colon cancer. My only symptom was blood in my stool. My children were 12 and twins, 9. I just wanted to see them grow.

I had surgery and underwent 6 months of chemo. Rectal cancer treatment is different though, and generally includes radiation first. I googled a lot, as I did not find this forum until I was receiving treatment. However, in reality, I think that googling just heightened my anxiety. I kept a lot of my fear to myself as I did not want to burden my husband, so finding this forum was a great comfort to me. There were always people who understood and who “got it”. I could ask a question and people here could help. My husband was great but I wanted to connect with people going through the same. Although I had great family and friends, I felt alone and found comfort here.

It’s hard to focus or think about anything else initially but it won’t always be like that. Try not to worry too much, easier said than done I know but it nearly drove my crazy. I’m sure you have a great medical team looking after you. Just take one day at a time. I’m still here and my kids are now 23 and 21. I’m so grateful. Hang in there and best wishes to yourself, your wife and for the arrival of your baby

[DarknessEmbraced]

I'm sorry for your diagnosis and I hope you will get more information soon.*hugs*

[Kevsmets]

Wow, floored by the replies. Thank you all. This forum as I said has been a soothing presence and hearing from similar situations really has given me that extra boost right now I needed. Especially with my daughter set to make her debut any day this month, if they do go the route of radiation first it means I won’t also be in the hospital when she comes. I know it’s not set for certain of course. And Lee I am 41 years old.

To me, whatever they need to do, I’ll do, after careful consideration. The bag; whatever. If it means I can see my daughter graduate high school in 18 years, they can place the bag on my forehead if need be!

THANKS again to you warriors. You have literally made this easier for me. And thanks for the advice I will follow it all!

-Kev

[Lee]

This response is for the lurkers out there who like me do/did not have much of a choice.

RADIATION destroyed my rectal muscles. I had as much control as a bird. About 2-3 second & then a dump for several hours at a time. The surgeon was talking to me about taking muscles from some other part of my body in hopes of recreating those rectal muscles that were destroyed from the radiation. Goal was to train these new muscles to act like rectal muscles. Was going to take 2-3 yrs to train these new muscles. Goal was 3 BM daily, butt could end up with 20+ on a daily bases for the rest of my life. Gee I was already there. There were people on this board who would not leave home without 3 spare change of clothes. They carried a duffle bag, me I carry a fanny pack with supplies. There were a few people like Belle who had their reversal changed into a permanent colostomy. She has 2 small children, butt didn't have much of a life due to bathroom issues. That bag gave her her life back.

The old timers around will remember the phrase "gas or pass" Imagine doing laps in a public pool, you pass what you hope is gas. You turn around & see your turd floating in that water. It happened & a few other embarrassing moments to several people around here. Anybody remember the swimming pool scene in Caddyshack?

There is another forum, UOAA, United Ostomy Association of America. Here is there web site.

https://www.uoaa.org/forum/viewforum.php?f=2

If you go there, you will see there are many reasons for getting a colostomy bag. Some people have to deal with medical issues like Crohn's disease &/or diverticulosis. Both are quite painful. I've been told at it worse, it can be more painful than giving child birth. I have 2 friends who have diverticulosis, both have had surgery once so far to remove sections of their colon due to the damage from the diverticulosis. Both were advised by their surgeon if the diverticulosis continues, consider having all the colon removed & getting a permanent colostomy bag to avoid addition surgeries. Thanks to me, they are both on board if it happens again, do it.

My brother had a co worker, I believe it was Crohn's disease, suffered from it for years, could not plan life because when a flair up happened, life comes to a halt. He finally took his doctor's advice, got a permanent colostomy bag & got his life back. When he heard about my issues, he knew what they were going to suggest, told my brother he would be happy to talk to me. Brother eventually told him, her decision, she wants her life back

I get it, it is not an option some people want to consider, butt just know there are many of us out there. You just don't know it.

Lee

[FightCRC]

I thought about it for a long time, and decided I would end my life at a time of my choosing before I would accept a surgery thst would leave me with a bag for the rest of my days.

This is totally your decision, of course. But for anyone else reading, they should understand that an active rectal tumor will continue to grow until it becomes obstructing. At which time, the patient is given a diverting colostomy, while leaving the tumor in place. This is not a good situation, and is very painful. Especially if the tumor becomes fungating.

Stage III is still mostly curable. Foregoing surgery will likely lead to Stage IV. By then, you may change your mind on surgery, but if the tumor has encroached on other organs, it may have to be a TPE (total pelvic exenteration). So if you thought one bag was tough, look up "TPE".

States that allow "Death with Dignity" option require that the patient be terminal, with less than 6 months to live. So if that's the route, you'll have to be pretty far along. Otherwise, you'll have to end your life some other way.

Nothing happy or pleasant here, and for that I'm sorry. But IMO, everything should be laid out to make the best informed decision possible, and not just the most emotional one. My two cents, as always.

[roadrunner]

Prayingforccr:

I totally respect your absolute right to follow your own road, but since I understand this is a difficult situation, I will offer two thoughts.

First — for context, I’m also doing some extra stuff for a chance of “watch and wait.” I had a “near CCR” after 4 rounds of chemo and chemoradiation. There was a bit more than a scar left, but biopsies were negative. I had bailed out on FOLFOX after 4 cycles because of side effects (but had achieved 70%-80% reduction after the first 4 rounds). I opted to finish the TNT 8 cycles to see if the added time for the radiation to nuke the tumor and additional chemo might resolve doubt in my favor. Going to have a reassessment soon, so we’ll see. I will, however do the surgery if I have to. A difference, perhaps, is that my surgeon believes I can avoid a permanent colostomy.

My thoughts: (1) Have you researched Hannah Witton? She’s a young successful YouTuber who chose a permanent iliostomy because of severe ulcerative colitis. She has lots of good content on living with a stoma and it helped me — she certainly appears happy, whole, and vital (though she forthrightly acknowledges the challenges). (2) I don’t know how old you are, but have you considered that medical advances in the future may permit reversals of ostomies despite challenges that cannot be mastered today? It may be a long shot depending on your circumstance, but medicine makes incredible advances every day, and thousands in every decade. It might be worth holding out for that.

Again, just thoughts offered with full respect.

[retiredteacher]

Hi Kev,

Finding this board was a godsend to me. Ask question here - there are many informed, experienced and helpful folks. My experience here led me to battle my insurance to go out of network for surgery. I live in an area with one board certified surgeon, who I could tell wasn't following standard protocols discussed on this board. Ended up at Stanford for my surgery, and I believe this made a world of difference. If you can, get to the best surgeon you can find. The chemo, radiation can really be done at smaller hospitals and clinics. But getting a good surgeon will make all the difference. Best wishes - you can beat this beast!!

[Lee]

.

I’m unwilling to go through a life of terrible suffering with a bag.

Okay, I have to ask, what are you talking about???

Please enlighten us and me?? What is the "terrible suffering" you are referring to with a colostomy bag??

Have to ask, how old are you?

Lee

[Kevsmets]

Update - scan results from MRI/CT scan came in and they were negative! It hasn’t spread elsewhere but it is Stage 3 and they see evidence in the lymph nodes right near the tumor. He did say the tumor looks low grade which he felt encouraged by. They’d like to do Radiation first then chemo, and then surgery. I’m feeling good now that I finally know the mountain i have to climb.

You all have been great and I’ve learned so much, thank you. I was gonna ask; a “low grade” tumor sounds like that’s good news in this whole deal too, right? It means it spreads slower? Much love to all of you!

[Lee]

. . . I was gonna ask; a “low grade” tumor sounds like that’s good news in this whole deal too, right? It means it spreads slower? Much love to all of you!

AWESOME NEWS! Yes low grade is good news. It means the cancer cells tend to act more like normal cells vs aggressive cancer cells that wanna spread to other sites. They want to do the radiation first to shrink the tumor and to make sure they get clean margins when doing surgery. This helps in the prevention of the spread of cancer cells to other locations like your lungs. Know that you are more than likely going to beat this.

Have they mentioned what type of chemo?

Lee