26 yrs lady dx with high grade neuroendocrine colon carcinoma with mets to nodes, ovaries. omentum, liver and bones. NEED ADVICE URGENTLY

[Soumen79]

Hi, we are absolutely shattered with the diagnosis of our dear daughter, only 26 years old, this vibrant young lady is now diagnosed with rare high grade neuroendocrine colon carcinoma with mete to nodes, ovaries, omentum, liver and few bones -

as revealed by FDG PET Scan done on August 28th, 2023 after colonoscopic biopsy revealed CA Adenocarcinoma, CEA-569, CA-19.9.

Then she underwent palliative laparoscopic right hemicolectomy on 11th September. Biopsy Report after that was more disasterous - its high grade Neuroendocrine Carciroma, multifocal, 6 polyps, largest tumor 4.5cm, invades pericolic adipose tissue, perimural invasion present, MMR proficient.

Current Medical plan is to undergo immunotherapy (Atezolizumab + Durvalumab) and chemo (Carboplatin + Eto poside).

In spite of all these, she is in great spirit, willing to fight

it out.

Our EARNEST request to each and every knowledgeable mind, is to -( a) Tell us if this is the right standard of care

( b) Which institute/doctor might be of further help - We are in India, but we will put all our limited resources to access anything anywhere as much as possible.

(c) Any suggestions in general.

Please suggest our options, thank you everyone.

[GCCA-Survivor Administrator]

Hi Soumen79,

Thank you for posting with us. I am so sorry to hear about your daughter and what she and your family are having to deal with. But from reading your message here, I think it shows a great deal of courage in facing what’s going on and that together you’re a team of fighters. That is very good to see. I think it’s a very advantageous attitude to have towards facing cancer. You’ve got to be a fighter. Cancer is the opponent that needs to be defeated.

My cancer fight took over four years and included a clinical trial with an immunotherapy drug. I had stage 4 colon cancer with deficient mismatch repair (dMMR) .. Lynch syndrome. I am currently NED (no evidence of disease). Because the research is really beneficial but very hard to keep up with, I think this is a good opening where artificial intelligence (AI) would be very beneficial to a cancer fight. Given that, I would contact one of these sites and maybe all three with the information you know and use them as a second or third opinion.

leal.health/

xcures.com/

massivebio.com/

I do wish you the very best and hope you get on a path to defeating your daughter’s cancer very soon. I think you know you should be getting genetic testing to see if there is a hereditary aspect to what’s going on. I would also suggest that you get the actual mutation sequenced (NGS) as this will give you the information for a possible availability of a current therapy or a clinical trial which may be beneficial. This is the type of research that helped me benefit from a therapy approved for certain lung and melanoma cancers when I had colon cancer. I see more and more research surrounding the cancer mutation as being far more important than the tumor type (lung, pancreatic, colon). I also found that getting treated at a research type cancer hospital may be more beneficial as the oncologist will have better access to information and data.

These are some of my thoughts as I went through my cancer fight. The first thing I realized is that I didn’t know how to fight cancer. I see that in your statements as well. But I also wanted to be able to contribute in any way to helping my doctors. I found focusing on things that I could control to be very beneficial. I could control my faith, attitude, hydration, nutrition, and exercise. I found these things to be very beneficial to focus on as they definitely contributed to the fight. I truly believe that focusing on these things is why I never got anxiety. I never lost sight of trying to contribute any way I could. I had good doctors. I went out and got a 2nd and 3rd opinion about the path my treatment was taking me on. Everyone was in agreement that my current path was the best. So I knew I had good doctors.

I do wish you the best. I’m sending prayers for your daughter and your family as well❤️💪. And if you find the time, Please send us an update.

Thank you,

~Tom, GCCA Survivor - Colon Cancer Connected Site Administrator.

Just a reminder - this group is here to offer support, share experiences, and offer our thoughts - but this is not medical advice, and you should always consult your medical professional(s). Additionally, for all emergencies, seek urgent medical care, never delay.

[Soumen79 in reply to GCCA-Survivor]

Hi,

Thank you so much for your kind words, I will follow your leads of websites, currently she is starting etoposide and platinum chemo for emergency defence, I noted your point of doing genetic sequencing, thank you sir!!!