Jump to content
Sign in to follow this  
DanniDe

Extensive small cell carcinoma - looking for survivors

Recommended Posts

Hi there, My fiance aged 31 was recently diagnosed with extensive small cell carcinoma of the bowel. He is fit and healthy and this has come out of no where. It started out with some tummy pain and constipation just a few weeks earlier.


The tumor started in his colon, which has spread to his liver, and some surrounding lymph nodes. 
We were told this type of cancer is generally a lung cancer caused from smoking, and it is rare to get it elsewhere. He has never been a smoker and it is not genetic, so sadly this has come down to a case of pure bad luck.

Based on this he is being treated as a lung cancer patient and has just finished his second cycle of chemo, consisting of cisplatin and etoposide.

Aside from the hair loss and some weight loss, he has had no other side effects and not been unwell at all, which is good to see.

Given what I have read online about this ugly and aggressive cancer type, and the rarity of it, I guess I am desperate for hope - I am seeking to find and hear from other small cell extensive survivors. Any hopeful advice or stories would be so much appreciated ! 

 

Share this post


Link to post
Share on other sites

Hi DanniDe,

I'm sorry to hear about your fiance's diagnosis. I don't have small cell, but I am a survivor of a rare and aggressive "misplaced" cancer. In 2011, I was diagnosed with Stage 3 tclear cell cancer of the cervix. This isn't the "regular" kind of cervical cancer, which is caused by  human papilloma virus (HPV). Clear cell is is most often found in the kidneys or in the ovaries. it's so unusual in the cervix that there were no studies of it and so it wasn't clear how it should be treated. The prognosis was "dismal" (my doctor's word) . But it was treated, aggressively, with surgery, radiation, and chemo. I had regular CT scans to watch for metastais, and that's how my  stage 1A non-small cell lung cancer was discovered in 2016. Now I have no evidence of disease (NED) for either cancer. I'm also NED for an early stage breast cancer in 2008. 

I'm an example of hope for us oddities with aggressive cancers in unusual places.  I wish your fiance all the best. Hang in there, both of you. 

Bridget O

Share this post


Link to post
Share on other sites
49 minutes ago, BridgetO said:

Hi DanniDe,

I'm sorry to hear about your fiance's diagnosis. I don't have small cell, but I am a survivor of a rare and aggressive "misplaced" cancer. In 2011, I was diagnosed with Stage 3 tclear cell cancer of the cervix. This isn't the "regular" kind of cervical cancer, which is caused by  human papilloma virus (HPV). Clear cell is is most often found in the kidneys or in the ovaries. it's so unusual in the cervix that there were no studies of it and so it wasn't clear how it should be treated. The prognosis was "dismal" (my doctor's word) . But it was treated, aggressively, with surgery, radiation, and chemo. I had regular CT scans to watch for metastais, and that's how my  stage 1A non-small cell lung cancer was discovered in 2016. Now I have no evidence of disease (NED) for either cancer. I'm also NED for an early stage breast cancer in 2008. 

I'm an example of hope for us oddities with aggressive cancers in unusual places.  I wish your fiance all the best. Hang in there, both of you. 

Bridget O

Hello Bridget,

Thankyou for sharing your story, it’s so comforting & wonderful to hear that you are doing so well after what you have been through. Did you seek multiple opinions when you were diagnosed?

We weren’t exactly given an optimistic outlook when we were told either, and what I have read online is so grim. We are going to get a second opinion - we have an appointment next week at one of the biggest cancer centers here in melbourne, and with the professor in charge of clinical trials and medical leads on new drugs. 

Share this post


Link to post
Share on other sites

Second opinion is a good idea. I had  an extensive surgery and then concurrent chemo and radiaition. I had no question about those--it seemed to be agreed on by my several doctors. However, when my case was presented to the local tumor board, on of the doctors on the board thought I should have additional chemo. My medical oncologist disagreed, saying there was no evidence it would be useful. (actually there was no evidence at all, since there were no studies of treatments for this cancer.). I went for a second opinion at the local medical school hospital, with a doctor who has a lot of experience with rare gynecologic cancers. She recommended some additioal chemo, and my original med onc agreed to do it. I'm glad I did! I figured that such an agresssive cancer warranted the most aggressive treatment possible.

Bridget O

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×