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Help for my neice

FSUTom
Posts: 4
Joined: May 2018

Hello, 

I was hoping perhaps someone might be able to share some insight with the diag my Neice just recieved.  She is just 27 years old.

We are told it's poorly differenciated carcinoma with neuroendocrine features, originating in the ascending colon and metastized into the liver.  Liver has lesions over 80%.

She is anemic, they have started her on a two drug platinum based chemo.  She just finished the first round but we have not had any other scans yet to see how it's ressponding. 

Does anyone know how to translate that definition a bit better to understand her options for treatment and does anyone know the best facilities for this?  We are willing to go anywhere.

 

Thanks very much.

abita's picture
abita
Posts: 813
Joined: Dec 2017

I am so sorry. I don't know what that diagnosis means. I am also stage 4, but my tumors are the standard kind. Sorry I can't help. I was on folfox now folfuri. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I wish I could help. All I can say is that I hope she'll come out of this fine. She's got a tough road ahead of her but she has youth on her side and strength definitely helps.

Jan

Woodytele
Posts: 163
Joined: Apr 2017

the dr should be able to give you an understanding on what this means.  They will probably keep her on strong chemo, FOLFoxFiri and check the CT in a few months.  The liver lesions will Hopefully respond. 

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

So sorry to hear about your niece.  I'm not sure what the meaning is to the reading, but you should have one of her doctors explain it.  She really needs some explanation as to what treatment is going forward and what the doctors have in mind to combat this disease.  Someone should go with her to the next doctor's appointment and ask some pointed questions.  Let us know if you get any more information and if you have further questions.  You sound like a great Uncle.

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Good advice from Kim regarding someone going with her. Two people remember more than one. A friend's daughter had cancer at 9 years old and the onc actually recorded their appointments so they could go over it after.

Jan

Ugur
Posts: 62
Joined: Mar 2018

I am a stage 4 colon cancer fighter for little bit more than a month.

I am also a young fighter as your niece. I am 28 yo, mets on liver too. 
It is harder to diagnose colon cancer at young age because it is the least expected. I know it sounds horrible, but look, your niece is going nowhere.

It will be a long run, be prepared for everything. Just show her how much she is being loved, and support her as much as you can, without treating her as an ill person.

Don't mind what is the actual diagnosis and all the statistics. Don't listen to the doctors if they sound negative. Your niece is not a number of an statistic book. The doctors and nurses are mostly professionals without sense of humanity.

First, believe that your niece is going to be fine, and ask to multiple doctors about the next steps. Probably a heavy regimen of chemo together with bio treatment.

I am sorry that I cannot help much about the questions you asked, I just wanted you to know there is always hope.

Best wishes,
Uğur

OzarkGal's picture
OzarkGal
Posts: 41
Joined: Oct 2017

"poorly differentiated" means that the cancer has a high tendency to spread which it has done so to the liver.  I have this too.  The goal is to get to a point where liver resection surgery is possible.  Liver resection is not generally possible when there are many tumors in the liver because some tumor-free liver needs to remain to regenerate.  Liver resection is not sometimes possible when a tumor is near a major blood vessel.  Treatment options are typically limited to chemo.  One hopes for a complete response (high level of tumor shrinkage) with the chemo.  Most see a partial response (some shrinkage).  Doctors tend to re-evaluate at 2-3 months to see if enough shrinkage has occurred for surgery to be possible.  This is when they order new scans.  If liver resection is not possible, then various chemo drugs are used to try to keep the tumors from growing and spreading.  Chemo drugs generally do not work indefintely and some can damage organs like the liver after prolonged use.  When one set of drugs stop working, doctors will move to a "second-line" of chemo drugs to try to get a response.

It is important to be hopeful but also realistic otherwise events can be devastating (I speak with experience).  With advanced cancer, it is a good idea to get a second opinion if nothing more than providing the family assurance that the chosen treatment path is the best for your niece.  Most important at this point is to manage side effects of chemo.  The onocologist should provide this information but an additional source that is helpful is:

https://fightcolorectalcancer.org/fight/treatment/managing-side-effects/

This is a good source for understanding advanced colon cancer:

https://www.beatingbowelcancer.org/wp-content/uploads/2018/01/Advanced-Bowel-Cancer-Treating-Metastases_compressed-1.pdf

US Reports ranks hospitals for cancer care.  When selecting a place for surgery evaluation, you want a place that serves a high volume of colon cancer patients.  If not, then the place may only rarely see a case like your niece and/or may offer fewer options.

https://health.usnews.com/best-hospitals/rankings

 

Slow-runner
Posts: 55
Joined: Oct 2017

My husband also has liver involvement (at least ten tumors) and also lung involvement.  He has been in treatment since September 2017 and is responding.  I believe it is very important where you go, we are at Penn in Phila. I would recommend a cancer treatment center or large university hopsital.  Do you have any nurse friends?  They are a great source of the inside tract.  Fighting this cancer is a long battle but there are discoveries made everyday that bring us hope.  We were devistated when we got the initial news (thought we would be picking out a coffin) but soon came to find that this is a journey and although he will not be cured, we truly feel that it can be held at bay enough for him to have many more years with us. Adding your niece to my prayer list.

FSUTom
Posts: 4
Joined: May 2018

Thank you all for sharing your experience and insight.  It's very helpful and I'm truly thankful for taking your time to respond.  She's currently in Dallas TX, I'm heading there tomorrow to be there for my brother and family.   I'm going to take what you have provided and try to help arrange the second opinions and evaluate the treatement centers.  Does anyone know about how this type of cancer tends to respond to targeted therapy / gene sequencing?  

FSUTom
Posts: 4
Joined: May 2018

My niece just had her first follup appointment to reveiw the biopsy results from both the colon and liver areas.  We were told she has a rare version known as MANEC (mixed adreno nuero endocrine carcinoma).  I've been struggling to find much information about this as it seems to be pretty rare and not as many resources on it out there.  Any information would be very appreciated or if there is another section of the board perhaps to ask if this isn't the right place .  

Thank you ,

Tom

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

I've never heard of that strain of colo/rectal before on this board, but I'm sure that someone will chime in.  We have a very researchable guy on here that posts many articles and info (it's Sandibuddy or something similar) and he is very good about research.  I'm hoping she gets some answers.  Make sure she is comfortable with all her team and if not seek a second or third opinion.  Wishing her the best.

Kim

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