My mother has been diagnosed with IIIB colon cancer

[GeorgiMM]

Hello forum!

I really appreciate the existence of this place. It was very helpful to me. Needless to say, I send you all the love I have in me.
If I am not posting this topic within the forum rules, I apologize, I am completely new here.
If I get anything medical incorrect, please excuse me!
English is not my mother tongue, so apologies for the mistakes as well.

Speaking on my mom - well we have heard the pT3N1c diagnosis. She had colectomy in late January and the staging afterwards was not pleasant as we are facing IIIB diagnosis with no lymph nodes involved, but tumor deposit. We are getting showered with information as she is about to begin treatment soon. I just wanted to get some advice from the veterans here as to be quite honest I want to limit the mistakes in the treatment process. I have a list of questions, if somebody has anything insightful for me, I will be very thankful.

1. Doctors are advising for chemo and they don't have definitive opinion on the radiation therapy in addition to the chemo. What was your treatment? I feel that she is scared of the side effects of the radiation therapy - what is your experience with chemo + radiation?

2. What was your chemo - I am asking this, because I live in Bulgaria - it is a small country and the main fear is that she is not going to be treated according to the best medical standards - I see 5-Fluorouracil (5-FU), Xeloda and etc. Is that the standard so to say?

3. Did you take second opinion on the treatment? What was the process? How did you do it?

4. Me and my sis are living 600 km from the city where my parents are, so we are not there. My father is with her, but I just wanted to ask - what kind of care did you need during the first cycle of the chemo - did you need a special caretaker to be with you. Could you fulfill normal daily tasks?

5. It is probably not the place, but I have a hard time understanding the N1c term. If anyone can explain it just like you would explain it to your golden retriever, I will be very thankful.

6. What is the support that you expected from your children, how have they helped you. To be quite honest I have a hard time placing myself in the right spot right now.

7. What medical tests did your children undergo? This is not a freak out question, just a genuine rational thought that I should probably go and screen myself more regular than other people.

Thank you for your answers!

[roadrunner]

You have a number of questions, and I’m currently pressed for time, so I’ll offer this for now:

https://amp.cancer.org/cancer/colon-rec ... taged.html

If you scroll down, you’ll see a very specific definition of “pT3n1c”. Hope that helps. Your team/doctor should be able to provide a resulting risk assessment, though others here may chime in. I’ll add that my very high level view is that in the US there would likely be 8-12 cycles of adjuvant (after surgery, which it looks like was done)
FOLFOX chemotherapy as standard-of-care. You can look it up. IMO it is very important to try to rule out metastasis through scans (this is usually a PET/CT, I believe) and blood tests (CEA is often a marker). Not sure that was done here. Beyond those points I shouldn’t go for now. Will try to circle back with more consideration.

[Rock_Robster]

I’m sorry to hear the news. I’m glad you’ve found this group, and hope you find it helpful.

Radiation therapy is usually only used if the tumour is located in the rectum (rectal cancer), not the colon (colon cancer). Do you know where your mother’s tumour is located? Given she had a colectomy, I presume it was in the colon hence radiation therapy is not normally done.

Standard of care “adjuvant” (meaning after surgery) chemotherapy is usually FOLFOX. This is a combination of oxaliplatin, fluorouracil (5FU) and leucovorin. In some countries FOLFIRI is used (replace the oxaliplatin with irinotecan), but this is not as effective in the post-surgery setting.

I am in Australia where the process of second opinions is quite simple - you just contact another doctor and ask for a review. I’m not sure how it works in Bulgaria; a good first step could be to ask her oncologist how she could get another opinion. If you aren’t confident and have the means to travel for an opinion, there are also some excellent cancer centres in Germany, France and the UK that I can suggest.

This is very individual unfortunately - some people can work full time on chemo, others can barely get out of bed. I was pretty rough for 3 days or so after each treatment, but I could still prepare food, shower, etc. It is good to at least have someone trusted nearby in case she feels unwell or needs help with medications, etc.

N1c refers to lymph node status, and it means the cancer was found in areas of fat *near* the lymph nodes, but not in the nodes themselves.

I don’t have children sorry so hard to say. All I’ll say is that everyone is different, and I would follow your mother’s lead on what she wants/needs.

They should do testing on your mother’s tumour to see if it is linked to a genetic condition such as Lynch Syndrome or FAP. If it is, the rest of the family will need to do additional surveillance. If it is not, your mother (and the family) may wish to do a genetic panel anyway to look for possible genetic markers, but this is much less common. Assuming your mother is elderly, it is more likely to be age-related than genetic (early onset cancer is a different story).

Good luck,
Rob

[roadrunner]

Rob’s responses are very good. I’d add a couple of things. As far as radiation goes, it can be used in colon cancer contexts where the surgeon isn’t 100% sure they got everything and want to protect against that. This may be related to the apparent detection in the fat around the lymph nodes, which Rob described. That’s just a *guess*—you should get the reason from your mother’s surgeon.

Right or wrong, it’s going to be hard for most on here to respond on potential radiation side effects for your mother’s situation, since Rob is correct that it’s used mainly in rectal cancer. I had rectal radiation, which caused significant side effects (but was physically tolerable) and SBRT on a suspected lung met, which carried no obvious side effects. But your mother’s situation would be highly dependent on location, dosage, type of radiation EBRT (wide field) vs. IMRT/SBRT, and the skill of the radiation oncologist. It’s a very complicated issue. I would get info from your doctors (on those issues, possible side effects/benefits) and research if you’re capable of it.

As far as chemo goes. Again, it depends on the chemo. FOLFOX is tough, but many can work through it. I did, but only remotely, and some days I was not particularly effective. But there’s a ton of stuff on this board about the issue. Xeloda (Capecitibine, oral 5-FU) is much more tolerable (Oxaliplatin—included in FOLFOX with infusional (pump) 5-FU—is a very tough drug), but less effective than FOLFOX. Again, this board will be more useful as you get more information and post it here.

Finally, you should consider doing a signature. That makes it much easier for people to respond. You can look at other people’s to see what to include. Good luck to you & your mom!

[Rock_Robster]

Thanks roadrunner, excellent points as always.

Indeed the tumour deposits in fat are one of my greater concerns too, as this could potentially reflect a higher risk of metastasis after surgery. It would be good to discuss with the surgeon and confirm whether they believe there is risk that any tumour deposits remain, or whether it could be confidently removed during surgery. Indeed a wider-field radiotherapy could be an option to reduce risk, although I suspect it could be very challenging to target given how much colon was ultimately removed, the fact that the large intestine moves around a lot, and other organs nearby.

Good luck, hopefully none of this is necessary!

[GeorgiMM]

Thank you for your support. I really appreciate it.
The tumor was in the sigma. They have removed it thanks to the colectomy.
You were right as they have ruled out radiotherapy.

On Monday we will meet with the oncologist who will oversee her therapy.
Thanks to you, I am prepared.

I wish you all the love from Bulgaria!

[rp1954]

Some of the issues that I worked on in 2010-2012 were oral chemo formulations vs the commercially common injectable chemos, cyclical vs continuous chemo, and duration.

One of my clear observations in the literature for adjuvant stage III or Dukes C, was that 5FU, cyclical Folfox and Xeloda appeared to be driven more by intensity rather than duration or continuity. For stage IV this can be inverted, especially with better utilized multimodal treatments like in my wife's case, where duration and continuity above a milder threshold intensity appeared more important. Also that drugs and nutrients with fewer negative side effects could deliver more years. These past dozen years the lower risk stage 3 patients' standard of care with Folfox, has retreated from 12 cycles, to 6-8 cycles. Presumably there is sufficient burnout of micromets and/or stem cells, cell clusters, and maybe some small mets, to balance small risks for much better quality of life.

For stage III, the literature of that time (2010-12) indicated the equivalence of cyclical xeloda to Folfox.
My caveat to that would be that that conclusion was probably heavily weighted with European capecitabine (Xeloda) data that often started dosing at 2500 mg/m2/day as Europeans suffered from less folic acid - 5FU poisoning. Most Americans have difficulty maintaining (maimtaining?) 2000 mg/m2/day of xeloda even on the 2 weeks on/1 week off cycle with standard of care protocols alone.

However when used with chronmodulation, folic acid elimination (with natural folate replacement), and sufficient select supplements, a carefully designed xeloda formulation with 2700 mg/m2 per day continuously(!) is comfortably doable for mCRC. Whether that fact can be directly extrapolated to some experimental 2(on):1(off) cyclical dose of 4000+mg/m2/day of xeloda may be questioned but should still provide food for thought for both stage 3 and stage 4 patients with different biochemical targets, formulations and tactics.