Re: newly diagnosed-feeling confused and stupid!

[Guest guest]

Welcome to the group, .

You will find a lot of information and support from the members of

this board.And....yes,you most likely feel very confused,we all were

and still are at times,BUT,you are not stupid.You cannot be expected

to know all the answers(we never do)That's why you're here-to

learn,and to vent. You will find links to some very good

informational sites in the files and links in the sidebar of this

webpage. Also, checkout yahoo.com/health for

basics,webmd.com,mayoclinic.com,cancer.gov(national cancer institute)

These are just a few to get you started. When you visit the

oncologist ask all the questions you can think of(start writing them

down so you remember when you get there)He/she should explain your

husband's disease in detail and describe all of his options,pros &

cons,guiding you toward an educated decision about treatment. It

sounds like he is probably stage 3(positive lymph nodes but no

distant organ spread)in which case his chances for a full recovery

(yes even cure)are good.His treatment plan will depend on many

factors and is different for everyone.Ask the doc for info(written)

on any meds or treatment plans.Most are very happy to do this

because they prefer an informed patient who can make intelligent

decisions.If you happen to get an oncologist who isn't talking so

you understand,make him/her repeat until you do or find a different

onc.This is one doc that you have to be able to communicate with on

a pretty intimate level so don't be discouraged if the first one

isn't quite right.Good luck,let us know how the appointment goes.Oh,

and did I mention that you can also use this board to vent and let

off steam or express your fears, anger,whatever.It's a very

supportive group-like a family and there will be times when you

really need to just let it out.We'll be here.

Hugs & Prayers,

H.

>

> Hi-this is the first time I have posted. I joined this group a

> couple of weeks ago when my husband (45) was diagnosed with colon

> cancer. This past Friday, he had surgery to remove the tumor.

> Before the surgery, he had an endorectal ultrasound which

determined

> that the tumor had gone through the wall of the colon, and

yesterday

> we found out that cancer cells were present in the lymph system.

The

> surgeon said that he did not see evidence that the cancer had

spread

> to other organs and CAT scans seemed to say the same. At this

point,

> we are still in shock and feel so ignorant regarding his

diagnosis.

> There is so much that we do not understand and do not even know

> whether we are using the correct terminology, etc. When the

doctor

> told us that they removed 25 cells and 2 of them were cancerous, I

am

> not even clear about what that means-in particular. Mu husband

just

> came from the hospital today and we meet with the oncologist next

> week. She said that they will probably start Chemo in three weeks

for

> six months.

> We feel so ignorant and do not know where to look for specific

> answers. I did do some research when he was diagnosed, but now

need

> much more specific info. Any ideas about where we can look?

[Guest guest]

Hi there, , I am so very sorry you have to be searching for answers for

this horrible disease. I will pray for you, as I do all on this board. My

thoughts are constantly here, even though I don't have cancer.

My brother found he had colon cancer in 2001 and what a shock! The following

year, his wife discovered she had mets from ovarian cancer from 1997, so they

have been " fighting " hard ever since. I have done tons of research for them

and when , the founder of this site, put this on the board, I copied and

saved it, as I have many things from this board. Some of these questions have

been answered, but many you will need to find out. Each go down this road

individually, so you are in for the biggest learning event in your life,

research, research, research is the key. Take control of your own health and

good

luck!

1) Exact Diagnosis? Stage? Other organ and lymph involvement?

2) Treatment options? Risk vs. benefits of each

3) Side effects of any treatments and how will they be handled

4) What other drugs are necessary what they are and what they are for?

5) GET DOSAGE and if they are as needed or on a regular schedule

6) When to call/Emergency protocol?

7) What other Dr.s and specialists will be involved in treatment?

8) Diet? Handling appetite concerns

9) Support Services?

10) Financial Considerations?

Betty

Younger brother in KY. age-62

10/01 CC; resection; TMN stage: pT3N2MX (Stage III) 5FU/Lev-6 months

9/03 PET showed recurrent met (left para-aortic malignant lymph nodes);

Xeloda/Oxiplatin infusions and 25 radiation treatments

2/04 Hospitalized --8 days severe hand/foot syndrome & diahrrea- 30 lb weight

loss; colonscopy-clear. Infection.

Finished treatment after hospitalization.

On cancer Vacation @ present; Waiting one month before another PET

5/10/04 - PET showed NED

6/30/04 - next scheduled PET scan

7/3/04 - PET showed NED

Praise the Lord!

9/29/04 - next scheduled PET scan

10/4/04 PET showed NED!!!!!

THANK YOU, LORD!

Enjoyed a wonderful summer--came to see me!

January--Next scheduled PET (3 months)

[Guest guest]

,

Things will be okay for your husband. There are a couple of

good sites out there - but before I give them, there are one or two

new things that you will not find without some detailed research,

because they are relatively new. I'll also give you a quick

overview of terms, etc:

First off, without getting too detailed, your husband had Stage

III colorectal cancer - this in colon or rectal cancer that has

spread beyond the muscle wall of the large intestine and invaded at

least one of the local lymph nodes, but has not gone anywhere else

locally nor spread to any distant organs. Generally speaking, the

fewer number of lymph nodes (I'm thinking that the surgeon found two

of 25 lymph nodes positive) positive, the better the prognosis - two

nodes is a really good sign, because it shows that while it has

spread somewhat, that somewhat is not very much. Differentiation

(something that they will talk about in the pathology report) is

also used to " grade " the invasiveness. Poorly differentiated cancer

is considered to be more " invasive " (more prone to spread) than

moderate or well differentiated cancer, because poorly means that

most of the cells around the cancer, although not cancerous

themselves, are hard to tell apart from the cancer, whereas well

differentiated means that surrounding cells are easy to

differentiate from the cancerous ones.

The normal treatment for Stage III crc is surgery, followed by

chemotherapy and sometimes radiation, if it is in the rectum. Most

pages that you will go to say that 5FU and Leucovorin or Xeloda is

used in an " adjuvant " setting. This means that doctors use the

chemotherapy to kill off any microscopic cancer that surgery missed

or any single cells that might be left in the body. This is rapidly

changing, though - recent studies have shown that the inclusion of

oxaliplatin to the 5FU and Leucovorin mix substantially increases

the chance that the cancer will not come back in Stage III

patients. It's use in this manner has been approved in Europe

within the past month or two; I do not think that it is formally

approved for use in the US for this yet, although from what I read

many doctors in the US are doing it. Previously, oxaliplatin was

approved for use only in metastatic (cancer spread to other organs)

settings. I would definitely ask his doctor to consider using it;

the drawback is the potential for more severe side effects.

Encourage your husband to get up and around as much as

possible. This will hasten the healing process from the surgery.

Other sites:

http://www.cancer.org (American Cancer Society)

http://www.mskcc.org (Sloan Kettering Hospital)

http://www.danafarber.org (Dana Farber Cancer Center)

http://www.ccalliance.org (Colon Cancer Alliance)

http://www.colorectal-cancer.net (Colon Cancer Network -

Priscilla, an active list member on this list, is the executive

director of this organization).

Hope this helps - all the best

Joe

>

> Hi-this is the first time I have posted. I joined this group a

> couple of weeks ago when my husband (45) was diagnosed with colon

> cancer. This past Friday, he had surgery to remove the tumor.

> Before the surgery, he had an endorectal ultrasound which

determined

> that the tumor had gone through the wall of the colon, and

yesterday

> we found out that cancer cells were present in the lymph system.

The

> surgeon said that he did not see evidence that the cancer had

spread

> to other organs and CAT scans seemed to say the same. At this

point,

> we are still in shock and feel so ignorant regarding his

diagnosis.

> There is so much that we do not understand and do not even know

> whether we are using the correct terminology, etc. When the

doctor

> told us that they removed 25 cells and 2 of them were cancerous, I

am

> not even clear about what that means-in particular. Mu husband

just

> came from the hospital today and we meet with the oncologist next

> week. She said that they will probably start Chemo in three weeks

for

> six months.

> We feel so ignorant and do not know where to look for specific

> answers. I did do some research when he was diagnosed, but now

need

> much more specific info. Any ideas about where we can look?

[Guest guest]

Joe and summed it so well!!!! Very little to add except that my

husband, just like yours, was diagnosed stage III right colon cancer

July 2003. After surgery to remove the tumor, 4 out of 10 lymph

nodes were positive but from what everyone could " see " , no other

organ involvement. Bert went on the standard stage III protocal of

5fu and Leucavorin for six months...but in January 2004 when I was

able to add him on my PPO insurance policy, we switched treatment to

a major cancer center, which is where I strongly recommend anyone

should go, and were very fortunate to get an extremely great

oncologist that came highly recommended. The new onc put Bert back

on chemo because he strongly felt, as Joe mentions, that adding

Oxaliplatin to the " cocktail " mix would greatly improve Bert's

chances of no recurrence and possible cure. It was done for another

six months and today, and for now (hopefully, pray to GOD, for the

rest of Bert's life), my Bert is NED (no evidence of disease).

My other words to you at this time are that as the caregiver, you

feel probably the most " out of control " that you've ever felt in your

life and the realization that you cannot necessarily " fix this " when

all you really want to do is fix it is not only frustrating but down

right scary. As one caregiver to another, please as hard as it may

seem, take one day at a time; be supportive of your husband and think

only positive things. Be aggressive (not beligerent) with your

doctors and make them give you answers and explanations...that's what

they are being paid for. Accompany your husband on as many visits to

the doctor as you can...especially in the beginning. I have found

that in being caregiver to both my husband and my mom, many times

when the doctor is talking, they kind of " shut down " and don't get

everything that he is saying. If the doctor tells you something, and

you don't understand, ask him to explain it again. And if you too

feel like shutting down, don't beat yourself up over it. It happens

all the time, simply pick up the phone later and call for

clarification. Most importantly, don't loose yourself in this whole

process. Take time for you and to regenerate your batteries. Your

husband cannot spend time concentrating on beating this bastard if

he's worried about you therefore, be kind to yourself as well.

Please keep us posted and positive thoughts and vibes are heading

your way.

Monika

>

> Hi-this is the first time I have posted. I joined this group a

> couple of weeks ago when my husband (45) was diagnosed with colon

> cancer. This past Friday, he had surgery to remove the tumor.

> Before the surgery, he had an endorectal ultrasound which

determined

> that the tumor had gone through the wall of the colon, and

yesterday

> we found out that cancer cells were present in the lymph system.

The

> surgeon said that he did not see evidence that the cancer had

spread

> to other organs and CAT scans seemed to say the same. At this

point,

> we are still in shock and feel so ignorant regarding his

diagnosis.

> There is so much that we do not understand and do not even know

> whether we are using the correct terminology, etc. When the doctor

> told us that they removed 25 cells and 2 of them were cancerous, I

am

> not even clear about what that means-in particular. Mu husband

just

> came from the hospital today and we meet with the oncologist next

> week. She said that they will probably start Chemo in three weeks

for

> six months.

> We feel so ignorant and do not know where to look for specific

> answers. I did do some research when he was diagnosed, but now

need

> much more specific info. Any ideas about where we can look?