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colorectal cancer with mets to liver- chemo- should we be hopeful

audreypatterson
Posts: 5
Joined: Mar 2011

My partner was diagnosed with colon cancer spread to liver about six weeks ago. Normal colonoscopy August 2010 and normal blood tests for liver function same time. He had no symptoms until the liver was so enlarged that he had severe pain in ribcage. They are still unable to locate the primary tumor but are saying it is collorectal. Oncologist here in Florida recommended starting immediate chemo with 5-FU, Avastin and Oxaliplatin. After only one treatment (without the Avastin)he found that the liver had shrunk enough to be almost without any pain. He had spent over a month in pain and unable to eat, so no pain and an appetite (with the help of Megace) is such a relief. Is this kind of fast response anything anyone else has seen and should we be encouraged? I know that the prognosis for this kind of cancer is not good, but are hoping for a good (comfortable?) year or two. We appreciate any comments. Audrey

Lovekitties's picture
Lovekitties
Posts: 3366
Joined: Jan 2010

Welcome to the board and so sorry for the reason that brings you here.

You say they have not found the primary tumor but are sure it is colorectal. I find that odd. Has there been a CAT or PET scan done? If so did nothing show up?

It just seems curious to have a diagnosis without locating the primary tumor.

I would suggest a second opinion, even though there is some relief from pain from the chemo which has been started. It may be that the primary tumor when located can be removed and slow, limit or prevent further spread.

Please let us know how things go. Wishing the best for you and your partner.

Marie who loves kitties

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Although I'm sorry you had to find us... it's a great resource and support board to find, especially at the beginning when everything seems so overwhelming and confusing. We are here to share experiences and decipher some of the medical jargon for you and your partner.

I'm a little confused too about how they could make a diagnosis of Colorectal cancer if they aren't sure where the primary tumour is. It's that primary tumour that determines the type of cancer... and then how it will be treated. For example, say the primary tumor was in the lung and it had spread to the liver (totally fictitious and for the sake of this example). Well, the patient would be diagnosed with Lung Cancer and even though there are lesions or tumours in the liver, they would be lung mets so would always be described and treated as lung cancer. You don't develop a new kind of cancer when the cells match the primary cancer cells)

Also, you don't mention that there are actual lesions or tumours in the liver, just that the liver was so enlarged that he was in severe pain. So I'm wandering why the oncologist determined treating the liver immediately with a standard colorectal chemo cocktail was the best treatment... and for there to be a dramatic difference in just one treatment. I would ask more questions of the oncologist on how/why he came to this decision... what is it based on? For all you know, he did tell you but when this is all so new it's amazing how much stuff we miss in these first visits because both of you would have been in shock and your minds overwhelmed. Next visit with the oncologist, take a notebook with you. Write down the questions you think of between now and the appt. and then when he gives them to you, make sure you write the answers down so you can go over them again when you get home and have settled down somewhat.

Also... it never ever hurts to get a second opinion. Some people think that this is a slap in your first doctor's face because it looks like you don't trust him and his plan/explanations. But in fact, with cancer, there can be so many different ways of looking at the disease and different opinions on how it should be treated. So it really doesn't hurt to get some of these differences in opinions so you and your partner can discuss which makes more sense for your situation.

Please stick around... and keep us posted!

Cheryl

audreypatterson
Posts: 5
Joined: Mar 2011

Dear Cheryl, Thanks for your quick reply. I guess I didn't really give a complete description. Ken has had a number of scans in the last six weeks. First a CT scan at the hospital, which showed spots on the colon and on the liver. Then a lower abdominal scan and a liver biopsy, which apparently did not show a definite colon tumor, but the liver biopsy and the "stains" which were done supposedly showed that the cancer had spread to the liver from the colon Then he had a type of barium enema last week which did not show a primary tumor, but we were given to understand that there could be a tumor on the intestine or even the appendix. I guess the only scan he has not had is a PET scan, and that could show more. It is indeed overwhelming, but I am glad to have the support of this network. Audrey

dmdwins
Posts: 453
Joined: Aug 2008

Hi Cheryl,

It is possible to tell the type of primary cancer based on a biopsy from the metastatic site. Sometimes they cant even find the primary tumor but they know from the mets that it is colon in origin and would treat accordingly.

I have a friend who had a sarcoma that had endocrine , lung and one other tissue that I cant remember.She was treated with the appropriate chemos, underwent surgery and she is doing well. They never were able to locate her primary tumor.

Just some new knowledge to expand your large knowledge base.

Smiles,
Dawn

dmdwins
Posts: 453
Joined: Aug 2008

I am glad to hear that your partner has gotten some quick relief from the chemo. I was diagnosed Stage 4 in 2007 and doing well. I am hopeful that you will have more than just one or two comfortable years together.

Smiles,
Dawn

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I didn't realize that Audrey's partner had more tests (biopsy) and scans, hence why I was questioning how they could know if they couldn't find a primary. But a biopsy definitely would be a huge help because the tissue they'd take would determine what kind of cancer cells they are dealing with.

But yes, anything to add to the knowledge base is always appreciated because we never know when it might impact something anyone of us is/might be going through :)

Hehehe... it would also help if I didn't try to ask questions (or answer them) when I'm in a chemo week and my brain is not at it's best speed . I may end up coming back here and asking the very same questions!! LOL!

Cheryl

AnneCan
Posts: 3692
Joined: Oct 2009

I am sorry for your partner's diagnosis. I have colorectal cancer, with mets to the liver + was diagnosed in March 2009, although they weren't sure about the liver until later. I am glad your partner has already had some relief from the chemo.

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

I have colon with mets to liver and other places, dx last FEbruary, doing quite fine and dandy, expect I have a few more years of life in me.
There is always hope, even in the dimmest hours, dim hours that I saw last year, feeling of no hope. And here I am, feeling quite well, going to college full time, volunteering part times, babysitting grandson all the time. Yep, there's plenty of hope and plenty of life left in Stage IV's. I don't plan on being gone for a very long time.
Winter Marie

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