Squamous Cell carcinoma of the Rectum

[Eleanorgrace]

Hello all, I was just diagnosed with squamous cell rectal cancer. Tunor is in lower part of the Rectum and has spread from close to the anus to the second fold in the Rectum. I'll find out what stage next week when I meet my surgeon but I believe it will be stage 3 or 4. 3 inguinal lump nodes one one side are involved and there may also be nodes involved on the left side. Chest, pelvis and liver were all clear.

This is a very rare cancer with little info available. Has anyone have experience or knowledge on this form of rectal cancer? From what I'm reading on the internet, it looks like the treatment is to remove the anus and Rectum and create a colostomy.

I'm pretty down about this and am finding it hard to stay positive. Any support would be appreciated. Many thanks in advance

[Tksunset79]

Hello EleanorThat's what I have. I was diagnosed in December 22. I have a colostomy bag. All doctors recommended that surgery to relieve pain and pressure off the rectum. Mine so far has not spread,but grown a small amount. I've been in and out of the ER and admitted to the hospital several times through the ER For rectal pain and abdomen pain. The surgery didn't work so well for me but has for others. Stay as possitive as possible. My first diagnosis I was told permanent colostomy bag but my second point suggested the surgery first then Chemo radiation therapy then try to reattach the stoma. If I can find you on here again I'll try to keep you updated on my treatments which should begin in 1 or 2 weeks. Listen to your doctor's advise get a second even third opinion. Why have I waited so long to get my treatments you may wonder. All I can say is fear. But I know that I should put faith over fear and move forward so that's what I'm doing now. I have a high school friend who had stage 4 colon cancer and had surgery for a colostomy bag first and at the end of all treatments he was cancer free and a possitive reversal with his bag. Another high school friend's son ( I'm 67 by the way) who had stage 3 of the cancer,had a colostomy bag surgery first.he is done with his Chemo radiation treatments and is in the hospital with his second attempt at a colostomy bag reversal. By everything I've discussed,the only thing that is similar is that noone is the same. The only thing we all have in common is that we know cancer sucks ,that we hate it ,want to get rid of it and that it helps to stay positive ,stay in prayer and keep faith over fear. God bless you

✌️☮️🌹💚

[GCCA-Survivor Administrator]

Hi Eleanorgrace,

Thank you for posting on Colon Cancer Connected. I hate to hear you’re having to deal with this but I do find it very positive that you’re getting it looked at next week when you meet with your surgeon. The cancer that I had to deal with was colon cancer. I have a hereditary form that I had to deal with, and my cancer represents 5% of all colon cancers. I don’t know if you would consider that rare, but there were not many solutions for this 5%. I actually had 2 cousins pass from what I had in 1996 and 2001. I was diagnosed in 2012.

After two years of standard chemo and radiation treatments, things did not look good. Eventually, a clinical trial found me and it involved an immunotherapy drug that had a proven track record with certain lung and melanoma cancers. Now I had colon cancer. At the time I wasn’t too enthused about the trial, but it ended up being the actual game changer in saving my life.

I say this to show you that you never know where a solution may appear from. In my case there were studies going on with lung and melanoma cancers and eventually the research found that it may actually be beneficial to certain colon cancer patients as well. The 5% of colon cancers that I had.

My advice would be to make sure you have genetic testing done so you know your biomarkers. It was these biomarkers that after two years helped the clinical trial find me. Also, there are some organizations out there that specialize in finding solutions for very specific diagnosis. They use artificial intelligence (AI) to stay on top of the latest therapies. If I had cancer today, I would definitely use these organizations as a 2nd and 3rd opinion and they may also offer topics of discussion with your current medical team. It is so difficult for doctors to keep up with the latest findings and you just want to give yourself every chance you can to find something beneficial to your fight.

Another thing to know is know if there is any hereditary aspect to certain medical conditions in your family? This is good information for your doctors to know as it could lead to specific tests that should be given in these cases.

I do wish you the very best in finding answers to what’s going on. I hope you get on a path to being well very soon. Please note that advances in research are happening every day. One of the things you can control is doing everything you can do to help them find you. Also, please let us know what you find out as this is this type of information that can prove to be helpful to others on this site.

Here are some sites you may want to check out.

leal.health/

xcures.com/

massivebio.com/

Thank you,

~Tom, GCCA Survivor - Colon Cancer Connected Site Administrator.

Just a reminder - this group is here to offer support, share experiences, and offer our thoughts - but this is not medical advice, and you should always consult your medical professional(s). Additionally, for all emergencies, seek urgent medical care, never delay.

[Tksunset79 in reply to GCCA-Survivor]

This was great information you offered to her. I've never heard or thought to find out about an immunotherapy drug???. I want to know more please on that !! And you said to give doctors family history so they can find out more and I always just ignored that part and thought it's not important they know about my family lol..I'd leave those parts blank on forms at clinics.well how foolish of me. I should go back and include my families medical issues right ??? And that would lead me to genetic testing being done is that correct? And you mentioned biomarkers ??, AI ?? Oh my you educated me tonight thank you ! I have colon cancer,rectum is where my tumor is and my cancer is listed as being rare too. I don't want to discuss me on Eleanor's post. I hope she replies to you as well as me. Don't know how you find me on here I'm still fairly new on this sight but please connect with me here and explain how to reach you! Thank you and may love ,peace and health be with you and Eleanor !!🕊️ ✌️💚🌹💙