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

[beach sunrise]

There has been mention on here before about having sperm frozen. Something to think about before radiation.

[Kevsmets]

Thank you! Yes they mentioned after the Radiation therapy most likely Xeloda and probably Oxalpilatin. Due to the location of the tumor, the surgery most likely will result in a permanent bag, but I told them they could strap it on my forehead if it means I get to walk my daughter down the aisle in 20 years

And yes, for our upcoming lil one to have a sibling I’ll most definitely be freezing my sperm!

Once the treatment starts, is it unlikely during treatment it could move from stage 3 to 4? The oncologist is pretty confident that this cancer is curable and seems encouraged.

Thanks again for all the info and support. I honestly don’t know what Id do without you all.

[roadrunner]

Your situation is similar to mine. I would ask about (or at least research) TNT (Total Neoadjuvant Therapy). I have not heard of doing radiation, chemo, then surgery, but perhaps it is a form of TNT. TNT is a newer strategy. The older one was chemorad then surgery, then adjuvant chemo. With TNT, you do 8 cycles of FOLFOX chemo, then chemorad (Capecitabine/Xeloda with the radiation). TNT has been viewed as an advance, primarily because it is often difficult to get the requisite number of chemo cycles in after surgery. Some authorities, however, question whether it is indeed superior. TNT can produce a complete pathological response up to 30% of the time. Numbers with the older approach I believe are lower, around 18% (but these numbers depend on when one assesses the results of radiation, the radiation course and amount, etc.) I’m a big fan of TNT (it has worked very well for me so far), but both are viable options. As I said, haven’t heard of your specific approach, will look it up

Also, look closely into the amount and type of radiation you’re going to get. I had increased and booster doses (60 Gy) but via IMRT, which made it very tolerable and reduces the likelihood of acute and chronic side effects (which can be very important). And keep in mind that chemo will suck, but if you manage it aggressively through communication with your oncologists, stay hydrated, eat as well as possible, and exercise as much as possible, it’s doable for most people (at least this chemo). For me, chemoradiation was like a vacation in comparison (and really not too bad, but see IMRT reference above). There are lots of sgnifcant variables, and lots of good threads on here if you search by topics (e.g. FOLFOX, chemoradiation, IMRT, TNT, etc.)

[Lee]

Your situation is similar to mine. I would ask about (or at least research) TNT (Total Neoadjuvant Therapy). I have not heard of doing radiation, chemo, then surgery, but perhaps it is a form of TNT.

I suspect Kevsmet is doing chemo/radiation combine. I could be wrong, butt that is what I suspect. Chemo/radiation, surgery, than follow up (mop up) chemo, just my opinion. Sometimes when taking a crash course on cancer treatment (new patient), info can be overwhelming, easy to get mix ed up, been there done that, move on.

I am curious what his chemo cocktail will be during radiation. Since my journey 15 yrs ago (chemo/radiation), the medical field has changed it (chemo) a few times.

Lee

[Lee]

Thank you! Yes they mentioned after the Radiation therapy most likely Xeloda and probably Oxalpilatin. Due to the location of the tumor, the surgery most likely will result in a permanent bag, but I told them they could strap it on my forehead if it means I get to walk my daughter down the aisle in 20 years

And yes, for our upcoming lil one to have a sibling I’ll most definitely be freezing my sperm!

Once the treatment starts, is it unlikely during treatment it could move from stage 3 to 4? The oncologist is pretty confident that this cancer is curable and seems encouraged.

Thanks again for all the info and support. I honestly don’t know what Id do without you all.

Sorry I missed this response until now.

Believe me, unlike another person on this thread, the bag is no biggie, still trying to understand where that person is coming from! See an ostomy nurse prior to surgery, make sure wifey is there too.

Me, I play in the ocean, go horse back riding, went on all day field trips with my kids when they were younger, got to be there, got to see them grow up. Back in 2004 dealing with staging, & learning all that we did, DH stated, "you will danced with your kids at their weddings". Make that your new goal!!!

Yes there is always a chance of stage III going to stage IV, butt the fact you have low grade is very good. Back in 2004, I told my surgeon I give you carte blanc to take all that you want, just take all of the cancer. She agreed, I've been cancer free ever since. I have given it !!0% since then. Yes 110%!!

Back in 2009, I was approaching my 5 yr mark, one of DB co-worker's wife was diagnosed CC early 30's. DB was telling DH about me about to celebrate 5 yr mark, take the bag. This guys says we found a surgeon ( guess it was a 3rd opinion, 1st two surgeon said take the bag, again back in 2009, 11 yrs ago). DB learned that mother lost her battle less than 3 yrs from diagnoses, left behind 2 young children.

One of my best high school buddies, she lost her dad to this disease at age 46 back in 1977-1978. limited treatment then. From the diagnoses to death, 6 month. That friend's mother & I were having a good cry over the fact i hit the 5 yr mark, she at one point stated , my DH was there fighting for you. I shot back your DH & my parents are the best of friends at this moment up in heaven. I felt his present & yes he was fighting for me along with my parents. More crying!!

Again, know in your heart you can beat this. Give it all you got right knowing that you will beat this.

All the best best,

Lee

[FightCRC]

.

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

As far as I can tell, it's just an irrational fear, not based on anything more than an abstract idea. It's not uncommon, I've come across this in every CRC group I've followed. The sad irony (and sadder inevitability) is that the patient who swears they'll never get a bag, ends up with one anyway (due to eventual obstruction). Only by then, the tumor can't be removed. The most tragic cases, to me, are those who started out as Stage III, but progress to Stage IV because they refuse the surgery. And every time, that patient admits "I f***** up." Whatever horror they imagined about the bag doesn't compare to the reality of Stage IV.

It's an extremely emotional time for most when the patient can least afford to be emotional. My sympathies.

[DarknessEmbraced]

I'm glad it's low grade! I hope your radiation and chemo go well.*hugs*

[Caat55]

Kev,
This forum was a gift and a tool I used to get through my diagnosis and treatment. I started treatment, chemo within three weeks of exercise, radiation two weeks later. The tumor was greatly reduced by time I had surgery, about 6 months later. I also had rectal cancer and surgeon was able to save enough that after ileostomy reversal, I have control and have returned to life as before.
Reach out to this group, us individually for sport.
Take care

[Lee]

The most tragic cases, to me, are those who started out as Stage III, but progress to Stage IV because they refuse the surgery. And every time, that patient admits "I f***** up." Whatever horror they imagined about the bag doesn't compare to the reality of Stage IV.

It's an extremely emotional time for most when the patient can least afford to be emotional. My sympathies.

Very true, Good friend of mine, many years ago, her cousin was diagnosed stage I colon cancer. She decided not to do surgery, butt rather cure her cancer by changing her eating habits, eat healthy, etc. After several years, she ended up in the ER, serious pain. Complete bowel obstruction, she was now a stage IV. They did an emergency colostomy and started her on chemo. My friend is like "why now", she was skin and bones at this point. She passed away a few month later.

Lee

[Lee]

I would end my life by breathing in helium gas before ever progressing to that misery.

I wish you much luck & success on your journey. I hope the path you have chosen is very successful for you.

Lee

[Kevsmets]

Thanks everyone I begin radiation and chemo on Oct 12th... they gave me my radiation “tattoos” today and mapped it out. Interesting stuff...

I finally got my MRI results and while I was told it was Stage 3 and hasn’t spread which was a relief, the report back on MyChart mentions I’m at “MX” not “M0” - is that foreboding? My CT scans MRI scans were clear of a distant spread but MX has me worried.

Here’s my full report - again my CT scans came back negative and this is the bottom of my MRI report for pelvic area:

“ IMPRESSION:

Bulky circumferential low rectal cancer extending into the upper anal canal with involvement of the anal sphincter and the right levator ani muscle, as detailed above. An exophytic protrusion of tumor anteriorly abuts the prostate gland without an
intervening fat plane such that invasion cannot be excluded. There are numerous enlarged abnormal morphology mesorectal lymph nodes as well as an enlarged right external iliac node and multiple abnormal presacral lymph nodes, all highly suspicious for
metastases. No liver lesions or other metastatic disease in the abdomen.

Rectal cancer stage T3d/T4N+Mx.
Circumferential resection margin: Involved
Sphincter involvement: Present”

[Lee]

I finally got my MRI results and while I was told it was Stage 3 and hasn’t spread which was a relief, the report back on MyChart mentions I’m at “MX” not “M0” - is that foreboding? My CT scans MRI scans were clear of a distant spread but MX has me worried.

Here’s my full report - again my CT scans came back negative and this is the bottom of my MRI report for pelvic area:

That MX means there is no pathology report yet. More than likely during your surgery, they will be looking for cancer spread. It's not a guarantee, butt more than likely post surgery you will still be a stage III. The number of lymph that come back positive will determine if you are an III A, B, or C. For me, presurgery, per some testing, they knew I had 4 nodes positive for cancer. Post surgery, pathology would confirm 6 lymph nodes positive for cancer. My surgeon also took a few liver samples during my surgery, all negative per pathology.

Good luck with radiation.

Lee