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New diagnosis - please help!

ccanon
Posts: 4
Joined: Aug 2004

Hello everyone,

A close family member was recently diagnosed with stage IV colon cancer. The cancer has metastisized to the liver - the GI surgeon said that there were approximately 10 nodules in the liver (about 40% of the liver) and that the cancer (in the liver) was inoperable. In fact, most of the oncologists that were consulted even suggested that there was no point in having any surgery done or even trying chemo! Thankfully, the GI surgeon did surgically resect the primary tumor from the colon but he confirmed (during surgery) that the liver tumors were unresectable. I had a few questions for the list:

1) Are there any survivors out there who had a similar initial diagnosis? If there are, would you be willing to share your stories/experiences?

2) Does anybody know why the oncologists (as far as I know, several were consulted) would give up so quickly and recommend to not even try chemo??

3) I've been doing a lot of research over the past few days to try and figure out what the consensus 'best treatment strategy' would be. Unfortunately, I'm probably more confused than when I started. What are people's feelings as to what should be tried first - clinical trial, the standard 5FU/Leuv. treatment, Avastin, etc.? Are there any treatments that will not be given if we try something else first?

4) We live in Canada and Avastin and Erbitux (as far as I know) are not yet approved here. Can anybody recommend somewhere in the states where we could go for treatment if we wanted to try these drugs and/or a clinical trial? Aside from the hospital, can anybody recommend specific doctors who have significant experience with cases such as this and who are knowledegable about emerging treatment modalities?

5) Does anybody know if Avastin or Erbitux have been approved for use in Israel?

I would really love to hear from anyone who's been in a similar situation and especially if people have managed to survive for some time with this terrible disease. Any and all encouragement at this difficult time would be very much appreciated.

Thanks,

anonymous for now

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

http://www.ctrc.cc/RadiationTherapy/HTML/RadiationTherapy.asp

bkieffe
Posts: 2
Joined: Jun 2004

My sister was diagnosed with stage IV colon cancer in June. The cancer has metastisized to the liver (inoperable too) also with 19 out of 23 lymph nodes testing positive for cancer. She is seeing a naturalpath doctor along with the oncologist for the chemo treatments with Avastin. She is doing very well. The naturalpath is costing her alot of money, but he is doing alot for her. She goes in twice a week for shots and spends most of her day preparing all natural foods, and taking ALOT of vitamins etc. Her spirits are great. Even her oncologist was very surprised how well she is looking and doing. I think she has a fighting chance between the naturalpath and her oncologist. Looking at her, you wouldn't even believe she has cancer.

I too would be very curious to hear the answers to all of your questions.

Don't give up hope. I think the reason my sister is doing so well is because she has such a great attitude and refuses to let this get her down.

Keep praying and believing.

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

Hi Anon for now,

I was stage 4 with liver mets. Although I was never told that the liver was inoperable, I did have 40% of my liver removed. That was 2 and one half yrs ago. Today, I am cancer free. I was 33 when I was diagnosed. I don't know why the docs are saying no to chemo. My physician was Dr. Fabrizio Michelassi at the University of Chicago. He is my hero. I have told Galliano (another person on this site) to contact my physician, and her hubby also had a positive experience with surgery. I'm guessing the cancer is near the portal vein, and that is why they're saying no to the option of surgery? I would also e-mail emily (known as 2bhealed on this site) for nutritional information. She treated her entire cancer that way, without chemo. She loves to help people understand her methods, and she is a wonderful person.

There is hope. You also might want to contact Lisa Rose through this site. She is a Canadian just like you, and she might be able to tell you where she got her treatment.

Keep those spirits up...either in your soul, or in your glass (smile) whatever it takes! There is hope, there always is...

Stacy

P.S. Check out the personal web pages from some of the names you find in this discussion section for more inspirational stories.

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Hi AFN,

I am stage IV also, mets to the liver and 1 to the lung. Before I began chemo, my onc thought I had 2-3 measurable tumors and hundreds of microscopic ones in my liver. It was not pretty news. Now after 5 months of chemo, he thinks all the microscopic tumors are not tumors at all, just spots on my liver that have probably been there since I was born. Of course we are keeping an eye on them, but the point is, NEVER GIVE UP!!!! If you don't like what the docs are telling you, you are doing the right thing looking for another one. Keep an eye out for Emily's response too, just as Stacy recommends. She is a wealth of wonderful information as I have slowly learned!!!!!

Keep asking those good, hard questions!!!!

Lisa P.

belinda25
Posts: 44
Joined: Jul 2004

Hey there Anonymous,

My dad was diagnosed only 6 weeks ago with stage IV colon cancer with mets to the lungs. His surgeouns and oncologists too decided not to operate but instead went strait into chemo. He has just finished his 1st cycle of Oxaliplatin/5FU and here in Australia Avastin is not apporoved yet by my dad is part of a clinical trial that uses it. So far my dad is having more good days than bad ones. Its a long way to go yet but I can tell you that the mind is pretty powerful so a POSITIVE attitude will make a huge difference :)

Dont loose hope and its great to see that you are trying to find out as much as possible, you came to a great place. Everyone has helped me a lot.

Belinda

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Anon.
You now have an insight into the wonderfull people here. You have come to the right place for advice and support. Unfortunately I am unable to contribute as my cancer was of a lesser staging. Nonetheless we send our luv/support and prayers to you and your afflicted family member.Kanga n Jen from OZ

carmen07
Posts: 120
Joined: Apr 2004

I don't know why the oncologist would suggest no chemo. Many Cancer patients live with Cancer today due to the new drugs on the market.
My hubby is stage IV and just completed having liver resect. We have met several patients that have inoperalble liver mets with lymph invasion and they are living a quality life and fighting this disease.
I would seek a second opinion from a large Cancer Center. If you write or call them they will put you with a nurse that will direct you into what steps you need for a second opinion.
The oncologist in your area may agree to treat your friend with the recommended chemo/dose from another doctor. Sloane Kettering in NYC, MD Anderson, J Hopkins, Boston Medical, Yale, and many other larger Centers which I am sure everyone here can give you some names if I left out are large Centers in the US. The internet is a wonderful source and lots of it can be done on-line.
Best of luck to you and if you have any more questions you came to the right place.

Luc
Posts: 1
Joined: Aug 2004

Dear Ccanon,

Your request for information was well thought out, and I'm sure you will do great in navigating the complex medical arena.

I am today a 54 year old woman,who was diagnosed with a relatively slow-growing liver cancer (mets) in April 1998, and was told like most patients that it was inoperable and that nothing could be done, and that it could become aggresive and I could be dead in six months. I have managed my own medical case ever since. I read Medline scientific papers everyday; learning what new research is being done around the world, long before it reaches the clinician. That is how I find leading physicians to contact across the country. I'd suggest you go to Medscape.com sign up for their service which is for physicians not lay people. You will be able to sign up for free, listing your profession as "other". There is a Resource Page for Colorectal Cancer, where you can easily learn about the latest research findings.

As you need to act fast, I would suggest you contact surgeons first, rather than just accept the verdict of "inoperable". I flew from Boston to Los Angeles for surgery at John Wayne Cancer Institute, as there is an amazing surgeon who operates on about five livers/week. If anyone would operate, it would probably be this pioneering surgical oncologist. Just pick up your phone and call 310-449-5206 for GI surgical oncology. A quick call will let you know if there is a possibility of surgery being performed. If so, detailed records can be faxed. This process is very fast. [I had one-third of the liver, one-third of the pancreas, the spleen, and the gallbladder removed, and radiofrequency ablation performed on remaining tumors. The surgery was fabulous. I am doing great today, although there is still cancer.]

In another reply it was suggested that you contact major cancer institutes in the U.S. That is a great idea and will get you to the best experts. But remember that every expert has a narrow agenda. If every I get an answer that I don't like I just keep researching, and asking others.

Good luck in your pursuit of knowledge and health.

Lucinda

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herenow
Posts: 2
Joined: Aug 2010

Hi,
My stage 4 with innumerable mets to the liver was diagnosed 18 months ago. Had the primary removed in June in a race to begin chemo asap. Started with oxaliplatin and xeloda . then went to xeloda with avastin. tumors are still shrinking. hope this helps.

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herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I was diagnosed with about the same, a few more mets then your close family member and told the same thing, or thereabouts, told to go home and enjoy the rest of my time on this earth.
Was offered hospice while in the hospital two days after my diagnosis. As to why they don't recommend the chemo, who knows? Had I listened I probably wouldn't be here right now. They told me rather then suffer through the chemo I should be enjoying my last days.
I took chemo anyway.
Now I'm waiting to hear if I qualify for surgery, many of my tumors have disappeared, and many of the ones in the lung have disappeared and the two remain have shrunk enough to qualify for the resection. All this after being told I would never qualify for resection. My official top amount of life left on this earth was on August 8th. That date has come and gone. I'm still here, still healthy except for the cancer hanging around and waiting to hear if I get surgery. (I go for my CT scan tomorrow again).
So hope? Yep, there's room for that, plenty of room.
My regime was 6 rounds of Avastin, 8 rounds of Xeloda, 8 rounds of Oxiplatinin.
Hospital wise, in US I recommend MD Anderson or Sloan.
Best wishes and luck to you and yours.
Winter Marie

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