Stage 4 with mets to skin

ad678 · April 2022

Hi all,

I'm looking for some uplifting encouragement. My husband was originally diagnosed with stage 4 adenocarcinoma at the age of 32 in 2017. He underwent 12 rounds of FolFox, 5 weeks of radiation and a total colectomy. At the time of the colectomy he had 4 tumors in his colon but we were told he was left with negative margins and there was a less than 5% chance this cancer would return.

He was NED from 2017-2020. In the fall of 2020 he began to have fevers and felt like there was a rock in his pelvis. They found a recurrence and told us this recurrence could be removed with only surgery. He went into the procedure thinking it would be a 6 hour procedure but it turned into an 18 hour procedure. When they opened him up they realized the tumor that was small on imaging had spread throughout his pelvis.

After surgery he was started on Folfiri + Cetuximab and was initially responding to it. His CEA went down to 4 at it's lowest with NED on scans. He then got COVID and was off chemo for a few weeks. When he restarted his CEA slowly began to rise and 3 tumors in the pelvis began to pop up. He then had an area on the pelvic wall biopsied that showed mucinous adenocarcinoma and unrecetable They have since tried Folfox + Avastin with little success. He then showed some peritoneal spread of his cancer although we were told this was very early spread with no discrete mets (just some nodularity of the left lower quadrant of the peritoneum).

He was then transitioned to a clinical trial and has been receiving a a new immunotherapy with Cetuximab. His most recent CT showed no NEW mets but slightly increased size of the tumors in his pelvis. At this time he was hospitalized for a kidney infection so they were not sure if this is true progression or if this was the infection causing things to get bigger. For the past 1 week he has had excruciating pain in his legs with new tender nodules on his back. His CEA is now 1303. His oncologist is concerned he is having mets to his spine that are effecting his nerves. He also said these nodules on his lower back that popped up all of a sudden are cancer.

Does anyone have any experience with mets to the skin? I was reading online and skin mets usually indicate a very dismal prognosis. His oncology team is slightly confused because all of his scan do not show significant progression. They stated we have to get the lesions biopsied but they're very confident those nodules are cancer.

This has been a nightmare of a journey for us. We are expecting twins in 2 months and am holding on to hope that there will be a treatment out there that will give him more time with his children.

Thank you in advance!

Trubrit · April 2022

Hello and welcome to the forum.

I am so sorry to read of your husbands terrible journey through Cancer. He really has been through the ringer, and at such a young age.

I confess, that in the many years I have been on the forum, I have never heard of CRC spreading to the skin; but it is Cancer, and I guess it can do what it wants.

What is the date of his skin biopsy?

You must also be sure and take good care of yourself, as you carry those little ones.

I am sorry I cannot help, but I wanted to say hello, and let you know that you are now a part of our team and we are a part of you and your husband's journey.

Tru

ad678 · April 2022

Thank you so much for reaching out Tru. This journey has been difficult. His biopsy and MRI are next week. We’re all hoping the clinical trial is working and there could be another explanation for these symptoms although nothing quite explains everything except progression.

ad678 · April 2022

Hi all-I just wanted to give an update for anyone who may come across this post. The biopsy was consistent with mucinous adenocarcinoma. I have never heard of cancer spreading to the skin but I guess anything is possible.

Trubrit · April 2022

Thank you for the update. I am sorry that it has turned out as Cancer.

What are your husband's treatment options, now?

Tru

ad678 · April 2022

Thank you Tru.

They’re going to radiate a mass found on his sacrum and hopefully radiate the skin lesions. I’m guess there was spread to the skin from his sacral met

Tentative plan is to start oral chemo pills now-Lonsurf or Stivarga. I’m praying those keep everything at or even shrink his pelvic recurrence.

StonedCamaro · April 2022

No words I have can comfort you enough! Sorry for the rough recurrence. Cancer sucks! Prayers for your family.

ad678 · April 2022

https://csn.cancer.org/discussion/comment/1696405#Comment_1696405

Thank you. Cancer does truly suck!

MandiePandie · April 2022

I am so sorry for what your husband and you are going through. I hope he gets pain relief and soon.

I was newly pregnant at the time of my dads diagnosis. I thought it was so difficult at the time but here you are, carrying twins while you support your husband. You are amazing.