Newly diagnosed

Annabelle41415

Welcome

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

SandiaBuddy

Thinking further

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

Doing one's own research is

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

Thank you all for the replies

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 again 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

Thank you, Tru!

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.

 

LeeColonCancer2021

Thank you very much,

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. 

LeeColonCancer2021

Thank you very much, Snap

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!

LeeColonCancer2021

Hi Sandia!

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

Absolutely it is good advice!

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

Hi Kim,

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

Thank you, Darcher!

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.

LeeColonCancer2021

Thanks, Sandia!

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. 

LeeColonCancer2021

Pathology Result and Chemo Advices

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

Chemo

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

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.

• NCCN 2021v2 guideline addressed perineural invasion (PNI) is a high risk systematic recurrence factor for stage 2 with significant lower DFS (one research suggests 5y DFS is only 29%), so 80% chance this will have recurrance and transfers... Adjuvant chemotherapy reversed the impact of PNI on 5- to 10-year disease-free survival.
• also, the NCCN 2021v2 guideline suggested significant lower survival rate and disease free rate with high grade budding for stage 2.
• then I found this even more disturbing article: High-Risk Features in Stage II Colon Cancer Portend Worse Survival Than Stage III Disease

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

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

SandiaBuddy

Sleeplessness

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.

Jmraff68

Hi!  I'm also newly diagnosed

Hi!  I'm also newly diagnosed so I can't answer many of your questions, but I did have surgery to remove a mass in the sigmoid colon. They were unable to remove and i now have an ostomy bag. So far, so good!  Not ideal of course - but not as "horrible" as I imagined it woudl be. You really become in "tune" to your bowel sounds and activity

Jnap26

Stage 2a and chemo

I was also staged 2a. I was also T3N0M0. I was diagnosed 11/14/19 and had a right hemi colectomy 11/19/19. I did a lot of research and had 2 opinions. Both oncologists strongly recommended the chemo due to the T3. I had one tumor, no polyps. I did it for 6 months, have not had any permanent side effects. I was able to work full time while on chemo. I felt like I had to do chemo, if I didn't and had a reoccurrenc, I would regret not doing it. Good luck with whatever you decide.

SnapDragon2

https://csn.cancer.org/discussion/comment/1689899#Comment_1689899

For MCV try beta glucan 1,3/1,6

Research MCV and CEA. MVC matters. Try to get it in the high range and keep it in the high range. I keep mine in the 100's with the beta glucan powder.

kalee0221

https://csn.cancer.org/discussion/324186/newly-diagnosed

Hi, thank you for sharing your journey.

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

Surgery recovery will be painful, but you’ll feel better afterwards.

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

I’m unsure if it’s common, but I do know that my friend had multiple in his colon as well. This eventually led to him having part of his colon removed.

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

My friend used to send photos of his stoma to me sometimes. He said it was weird at first, but the discomfort/pain it saved him from was worth it. I would sometimes hear him screaming out in pain before he got the stoma. I’ll never forget what it sounded like.

My friend was 28 when he was diagnosed with stage 4 colon cancer in 2019. He survived well past what doctors expected. He went through all the treatments and surgeries he possibly could. My best advice would be, stay head strong, and don’t think you have to go through this alone. There will be many days ahead where you will want to give up. Please don’t. Your loved ones, whether they know it or not, only want what’s best for you. Cancer patients tend to isolate loved ones in order to save them from the pain of their illness or to not feel like a burden. You are never a burden. You are someone with an illness who should be treated the same way as anyone else being sick. After losing my friend a week ago, I’ve come to understand why you all are hesitant to share. Your bravery and vulnerability is always appreciated. Keep up the good fight and stay strong.