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Newly diagnosed

Posted: Tue Aug 13, 2019 12:06 pm
by Vana3
Hi I am a 36 year old Mom of 3. I had no other symptoms except feeling funny after the birth of my 3rd child 6 months ago. Just 7 weeks ago I saw blood for the first time in my stool and went right into the doc. They found a tumor in the cecum during a colonoscopy.
I had a right hemicolectomy 5 weeks ago. CT scans looked clear but during the surgery doc found a 1cm omental deposit that was cancer
17 out of 45 lymph nodes were positive, LVI present
Treatment suggested was 12 rounds of Folfox to start after healing from surgery. Should I be getting a second opinion ?

Re: Newly diagnosed

Posted: Tue Aug 13, 2019 11:54 pm
by TinaFish
Hello, Vana

I'm so sorry for you. I'm a 45-year-old single mother of two kids, 7 and 3. I was just diagnosed two months ago. I'm not knowledgeable enough to give any advice or answers, but I can give you moral support. The whole thing just feels like a nightmare that you never wake up from. But you're so fortunate to have found this site. There are so many kind, helpful, knowledgeable people here. I wish you the best!

Re: Newly diagnosed

Posted: Wed Aug 14, 2019 1:46 pm
by Deb m
Hello Vana,

My DH"s cancer was also in his cecum. His grew out towards his appendix. He started having pain like you would with an appendicitis, otherwise we would of not know for a long time down the road. He had surgery and did 12 rounds of folfox. It wasn't easy but we made it thru. We live in a very rural area of Kansas and the closest hospital to us is just a small, city hospital. We chose to go to MDA for a second opinion and it proved to be very beneficial. We did all of his surveillance follow ups thru them and basically used them as the primary oncologist and just received the chemo local under MDA's orders. I know many other people who do kind of the same thing. If your not being seen or treated by a major cancer center, I would highly recommend getting a second opinion if possible from one. There are several which are very good, MDA, Solan Kettering, Mayo clinic, Fred Hutchinson center. I'm sure there are others as well, but those are some of the few I usually here about people going to. It is my opinion that a second opinion almost always proves to be beneficial in some way, even if it's just piece of mind that your doing all you can and it's correct.

This is probably not the "club" you want to be a member of, but you will receive tuns of good helpful information. Hang in there, as you can read, this cancer is beatable even at it's latest stage.

Deb m

Re: Newly diagnosed

Posted: Wed Aug 14, 2019 3:01 pm
by ginabeewell
I think a second opinion at an NCI is always valuable - someplace like MSK, Mayo, MD Anderson, etc. There are about 12 and they are spread throughout the country, so depending on where you are, you should be within a few hours of one.

They may tell you the same thing that your local hospital did, and that would give you confidence you are on the right path. Or they might find something that takes a recommendation in a totally different direction.

FOLFOX is a very common first line treatment so you could always get started with that in the meantime. That's what I ended up doing - but I didn't like my oncologist so I switched to a different oncologist by the time I had my second treatment. Don't be afraid to make sure you've got the right fit there - you want someone with curative intent. The first doctor with whom I worked told me he would try to keep me alive for two years. Sorry but I needed someone who was prepared to be more aggressive!

Re: Newly diagnosed

Posted: Wed Aug 14, 2019 8:37 pm
by NHMike
I was Stage IIIB and got second opinions (many people suggested this to me) but I'm only an hour outside of Boston. I wound up getting chemo and radiation locally and surgery and surveillance in Boston.

I would definitely get a second opinion with Stage 4.

Re: Newly diagnosed

Posted: Thu Aug 15, 2019 10:30 am
by Punky44
So sorry you find yourself here. My mom got a second opinion at Mayo and ended up doing most of her treatment there (but did chemo locally under the orders of Mayo.)

Re: Newly diagnosed

Posted: Thu Aug 15, 2019 1:23 pm
by betsydoglover
Sorry you have to be here. Given that the omentum spot is a met, have you asked your onc why Avastin is not being added to your regimen? Definitely something to ask.

Re: Newly diagnosed

Posted: Thu Aug 15, 2019 6:46 pm
by nbrandt
I went to the Mayo Clinic for second opinion. Did Folfox as recommended in 2010. Here after colon cancer in appendix and colon. Always good to have a second opinion from a major cancer center.

Re: Newly diagnosed

Posted: Thu Aug 15, 2019 7:43 pm
by boxhill
Hey, Vana3, welcome. I wrote a reply that I seem to have accidentally deleted.

To summarize, you mention that you are not Lynch, which leads me to wonder if you were tested for it because your tumor was dMMR, which means you are likely to be MSI. If so, you might want to look into studies where you could get immunotherapy as a first-line drug.

If you are KRAS wildtype, you could benefit from Vectibix or Erbitux along with one of the chemo regimens, folfox, folfiri, or folfoxiri.

If you know you KRAS, BRAF, and MSS/MSI status, add them to your signature. If not, get copies of or access to the reports.

I would strongly suggest getting a second opinion at a major cancer center. Any good oncologist should be on board with that. Mine sent me to Dana Farber. I'd also suggest going for the kind of doctor ginabewell describes. Someone who who think is aggressively going to try to get you to NED/cure you.

Re: Newly diagnosed

Posted: Tue Aug 20, 2019 3:52 pm
by Vana3
Hi everyone,

Thanks for your replies. We went to Dana-Farber for a second opinion and it was good that we did...
They did more tests and found 1-> 5mm met on the liver and 5 more suspicious that are very very tiny but could be treated with surgery down the road.
This doctor has also recommended Folfox but added Avastin after we asked about it (Thank you @Betsydoglover)
Now we will wait for them to test the tumor which can tell us more.
Right now they think I am MSS but there was some underlying genetic stuff in the original pathology that made them think I could be MSI still....?
They are worried about more small mets in the Peri so I will have a Pet scan tomorrow and then start Chemo on Thursday...

I am really overwhelmed, confused because I have always been healthy and active... and now I am scared I will not be here for my kids. It's all happened so fast

Re: Newly diagnosed

Posted: Tue Aug 27, 2019 12:53 pm
by DarknessEmbraced
I'm sorry for your diagnosis and I hope your chemo goes well!*hugs*