Rectal cancer with inguinal lymph nodes and iliac lymph nodes

Posted by cindyzhouca @cindyzhouca, Jul 9, 2023

I was diagnosed rectal cancer with inguinal lymph nodes and iliac lymph nodes early this year (2023). I had 5 rounds of chemo so far, and the latest CT showed all the lymph nodes shrieked a little bit, not too much. However, my oncologist told me that the surgery can not remove or clearly clean all the lymph nodes, which means it cannot be cured totally. After discussing with surgeon, they don’t suggest the surgery. My treatment plan will be the chemo for rest of my life. I am only 40+, scared and depressed to see my little kids every time. Just wondering if someone has the similar situation with the inguinal lymph nodes and iliac lymph nodes spreaded, what’s your treatment plan? Many thanks

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I’m so sorry, knowing how scary this is. I would first recommend a second opinion! Chemo for life at your young age is more than daunting.
I have stage 3 colorectal cancer, with a tumor in the sigmoid part of the intestine. I had surgery after 5 rounds of radiation, and she removed the tumor and 24 lymph nodes. After the biopsy, 16 were cancerous. I’m halfway through 8 rounds of chemo. My full body CT scan last week showed no new or mestasticized cancer anywhere - including lymph nodes.
Don’t give up hope and don’t ever stop advocating for yourself!

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Dealing with the same. I was diagnosed in 2015 with stage 3 colorectal went thru chemo, radiation, and surgery to remove tumor in rectum. Was cancer free until this year when lymph nodes showed up.
Started folfiri w/ vetribix every two weeks. After 5 sessions I’ve lost 20 pounds and feel worse than when I started. I can’t walk across the room without soiling myself.
Considering stopping chemo. I feel like the oncologist treats the cancer not the patient.
Considering stopping the chemo. I can’t do this till the day I die!

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Hi @cindyzhouca, you have been dealt a tough hand. I agree with with @cjay that it may be worth a second opinion if you can. It may also be worth discussing what chemo looks like as a maintenance treatment. I’d be asking questions like:
- What potency of chemo will offer maximum effect on the cancerous cells and also allow side effects to be tolerable for quality of life?
- Which chemo regimen options do I have? And what side effects are most common with each?
- Can I take chemo vacations?

I’d also want to share with your team what is important to you. How you define quality of life given the situation. When so much is out of your control, what would you like to take control of? Let them know you’re more than your cancer and what you value most.

You may also wish to speak with an oncology social worker. They can help with many things, including emotional help with depression.

Here’s more information:
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

I understand the push and pull of emotions you must feel with your young children. They probably keep you grounded in the “normal” day to day of making lunches, school activities, summer fun, etc. and in the same minute you feel a profound sadness when you know nothing is “normal” or routine. How old are your babies?

Cindy, have you been referred to palliative care?

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I’m am going to ask for a chemo vacation this session (tomorrow). I don’t know what the oncologist will say. The last session destroyed me. It seems like each session takes longer to recover from for me. I’m going to also ask if I can do infusion every three weeks instead of every other week. I’ll keep you informed as to what happens.
I also find myself going in for a bag of fluids every other day. It seems to help me.

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@mogwa823

I’m am going to ask for a chemo vacation this session (tomorrow). I don’t know what the oncologist will say. The last session destroyed me. It seems like each session takes longer to recover from for me. I’m going to also ask if I can do infusion every three weeks instead of every other week. I’ll keep you informed as to what happens.
I also find myself going in for a bag of fluids every other day. It seems to help me.

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@mogwa823, I think it is worth a discussion with your oncologist about the pros and cons of extending the time period between chemo sessions and/or taking a break for a period of time. This was an option that was available to my dad. He had colon cancer, not rectal cancer, so it might be different. They may also be able to lower the dosage of one or more of the drugs with similiar efficacy. I'd appreciate your returning to share what you learn after talking about it with your team.

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@colleenyoung

@mogwa823, I think it is worth a discussion with your oncologist about the pros and cons of extending the time period between chemo sessions and/or taking a break for a period of time. This was an option that was available to my dad. He had colon cancer, not rectal cancer, so it might be different. They may also be able to lower the dosage of one or more of the drugs with similiar efficacy. I'd appreciate your returning to share what you learn after talking about it with your team.

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I saw my oncologist yesterday and requested that I skip infusion this week. I explained that my last infusion was difficult. The skin on my hands were cracking and bleeding, my tongue felt like it was shredded by razor blades and the fact I dealt with diarrhea for ten days was exhausting. He agreed I should take a break and restart my folfiri-vectbix next week at smaller dosages. He told me my markers had remains in the 4.2-4.4 range for six weeks, and that we were heading in the right direction. My markers back in April were 20.8 before starting infusion therapy. He told me I still had 5 more sessions of Folfiri-Vetribics and then we would do a scan to look at the lymph nodes and nodules on my lungs. I will always have some kind of chemo therapy in my future but I was told I can request a break when things get too difficult. It feels so good to do the things I did before starting chemo but I know this is all helping to extend my life. Grateful for all those supporting me and the doctors and nurses caring for me.

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@mogwa823

I saw my oncologist yesterday and requested that I skip infusion this week. I explained that my last infusion was difficult. The skin on my hands were cracking and bleeding, my tongue felt like it was shredded by razor blades and the fact I dealt with diarrhea for ten days was exhausting. He agreed I should take a break and restart my folfiri-vectbix next week at smaller dosages. He told me my markers had remains in the 4.2-4.4 range for six weeks, and that we were heading in the right direction. My markers back in April were 20.8 before starting infusion therapy. He told me I still had 5 more sessions of Folfiri-Vetribics and then we would do a scan to look at the lymph nodes and nodules on my lungs. I will always have some kind of chemo therapy in my future but I was told I can request a break when things get too difficult. It feels so good to do the things I did before starting chemo but I know this is all helping to extend my life. Grateful for all those supporting me and the doctors and nurses caring for me.

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That's good news, @mogwa823. I'm so glad you asked. I hope the chemo vacation brings some relief and help you feel more able and willing for the next treatment. But that bridge will be crossed when you get to it. One step at a time. One decision at a time.

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