Not getting answers

Fabs4ever

Submitted by Fabs4ever on February 16, 2011 - 8:58am
My husband had been sick since July 2010. Tests showed nothing. Only spots on the liver He then had a colonopsy on a Friday, January 21, 2011, results came back the next Thursday, that has colon cancer, must be removed immediately, surgery on the following Wednesday. His colon was completely blocked from the tumor. Also, got news that it metastasized to the liver. There is three spots on the liver(which we were told before they were there, but nothing to worry about). The spots are cancer.

After the surgery, he kept running a fever, at one time 103.5. Of course more tests were ran and nothing. However, was not releasing him til fever broke. Finally on the 10th day, it was determined he had got a staff infection on the lower part of his belly. The infection was poked open by the doctors finger and puss just poured out. he was placed on a very strong antibotic and began to feel better instantly. He still has his staples in the upper part of his belly, but has an open hole on e lower half. They sent us home placing only gauze over the wound and not providing any medicines to treat the hole.

I ask questions of what to expect, prognosis, etc and not getting any answers. They are referring us to Pittsburgh for the liver, but not answering any questions I have.

I don't know what to ask and when I do ask something want answers. Forget being vague.

Any suggestions..

Looking for meeting folks going thru same stuff, any assistance as far where to turn for everything.

Thanks
Pam

Pennymac02

Not knowing
What an awful way to be introduced into the world of cancer caregiver. Its been my experience that doctors are vague when they don't know the answers themselves. Each case is different and they rarely say anymore you have ___% chance of surviving ___ months, you have ___months to live.

I googled myself sick when my husband was diagnosed with liver cancer. And at the end, I practically lived at the hospital so I could corner the MDs with questions when the came for rounds. I generally made a pest of myself until they were forced to deal with me. The only prognosis we got was when they moved my husband to hospice and said he had "days, maybe hours" Sometimes, no news is good news. If the cancer has mets to the liver Pittsburgh is a good place to be. Liver specialists are the oncs who should be looking at your husbands case. My husbands liver docs were at the top of the food chain over a team of no less than 15 other doctors.

PM me any time if you have questions.
Penny

Fabs4ever

Pennymac02 said:

Not knowing
What an awful way to be introduced into the world of cancer caregiver. Its been my experience that doctors are vague when they don't know the answers themselves. Each case is different and they rarely say anymore you have ___% chance of surviving ___ months, you have ___months to live.

I googled myself sick when my husband was diagnosed with liver cancer. And at the end, I practically lived at the hospital so I could corner the MDs with questions when the came for rounds. I generally made a pest of myself until they were forced to deal with me. The only prognosis we got was when they moved my husband to hospice and said he had "days, maybe hours" Sometimes, no news is good news. If the cancer has mets to the liver Pittsburgh is a good place to be. Liver specialists are the oncs who should be looking at your husbands case. My husbands liver docs were at the top of the food chain over a team of no less than 15 other doctors.

PM me any time if you have questions.
Penny

Thx
I appreciate your response!!!

Any advice of ?'s I should ask?

here4lfe

Not Getting Answers
Welcome to the board. I first found this site when cancer entered my world. My caregiver experience (my wife has stage 4 CC)

1. Colon cancer metastisized to the liver ( 9/2009)
- Colon resection
- Aggressive chemo (FOLFOX). 12 treatments

2. Liver resection (take out the liver mets) (2/2010)
- Went well, until...

3. Wound infection (4/2010)
- Doctor opened it up with a scalpel
- Had to send the culture to the CDC to identify it
- Twice a day irrigation and re-packing
- Left a scar

4. "Mop-up Chemo" Xeloda ( 6/2010 - 11/2010)
- Life getting back to normal until ...

5. CEA went from 3.2 to 6.5 !!??!!
- Mets to the liver again

6. Chemo embolization (to kill the liver met "in-situ") 11/2010

7. Currently, under no active treatment

In-between, making memories, sharing love, and planning for the future.
Learn as much as you can, get familiar with the language of cancer treatment, and ask all the questions you can. The oncologists are very good, but make sure the one you choose is compatible with your husband.

Best

Barbara53

you need home health nurses
Pam, you need home health nurses, which the dr's nurse can order by phone. After such an ordeal, you should be able to get 2x week wound care visits. I know it's one more thing to attend to, but you need to make a very insistent phone call. Hope today starts going better.

Fabs4ever

Barbara53 said:

you need home health nurses
Pam, you need home health nurses, which the dr's nurse can order by phone. After such an ordeal, you should be able to get 2x week wound care visits. I know it's one more thing to attend to, but you need to make a very insistent phone call. Hope today starts going better.

Thanks for the responses...
Thanks for the responses... Please keep them coming.. I haven't talked to anyone about all this... I just don't want to burden people. I try to stay strong for my husband.

We(well, my husband) are scheduled for a PET Scan on Saturday and then see the Dr in Pittsburgh on Monday.

The research that I do is so upsetting. So gloom with nothing positive. My husband hasn't said too much about it either.

here4lfe

Fabs4ever said:

Thanks for the responses...
Thanks for the responses... Please keep them coming.. I haven't talked to anyone about all this... I just don't want to burden people. I try to stay strong for my husband.

We(well, my husband) are scheduled for a PET Scan on Saturday and then see the Dr in Pittsburgh on Monday.

The research that I do is so upsetting. So gloom with nothing positive. My husband hasn't said too much about it either.

Check the date
Franky, anything before 2004 (when Avastin and OXI was approved for CC), is outdated by the new treatments.
Try to keep yourself in good spirits, learn about the treatment protocols, don't dwell on the statistics. Each day the sun comes up, and is a new opportunity for sharing, caring, and fun.
Bounce over to the Colon Cancer Forum. It's the most positive bunch on the net!

Best

Twins_4_Life

Hi Pam
Hi Pam I'm sorry about what you and your husband are going through, you asked for help with questions here are a few you may want to ask, if you don't know the answers already.

1. Ask if they got all of the tumor out of the colon.
2. Ask what stage your husband is, they will know better after the PET scan.
3. Ask what is the plan for treatment, Chemo/ Radiation
4. If he will be getting Chemo ask what drugs will be used, and for how long, Ask about side effects from treatment, and tell them you want a print out of the drugs and side effects.
5. If he is having radiation ask to about side effects and how many weeks of treatment.
6. Are you going to PUMC? If so Ask about TheraSpere as a treatment for his liver and if he is a candidate for this, I included a link below and a small desciption to what it is and how it works.
7. If he will get Chemo ask for nausea medicine (Zofran, Compazine they both work well, try to stay away from Reglan is has some side effects.
8. Ask do you think we can beat this, what are his chances.
9. Ask whatever is on your mind no matter how little it maybe if you have a good Dr. then he would not mind answering some routine questions.

Once you get your questions answered, do some research, you'll kind of know what going on and what to expect, knowledge is a very powerful part
of cancer.
Well I hope I helped you out somewhat, feel free to contact me, keep us posted.
I wish you the best luck
.....Kristen...
Below is the info on TheraSphere

TheraSphere is a hepatocellular carcinoma (HCC) treatment therapy that consists of millions of microscopic, radioactive glass microspheres (20-30 micrometres in diameter) being infused into the arteries that feed liver tumors. These microspheres then embolize, lodging themselves in the liver's capillaries and bathing the malignancy in high levels of 90Y radiation. It is currently approved for patients as a neoadjuvant to surgery or transplantation by the U.S. Food and Drug Administration and is being used at a number of clinical centers in the United States.





http://en.m.wikipedia.org/wiki/TheraSphere?wasRedirected=true

grandmafay

Answers
I found during my husband's six year battle with colon cancer that I had to become his advocate. I did find a set of questions on the American Cancer Society website. I used them early on. I also did research and asked the doctors to explain what I found. Be sure to ask for copies of all test results. They often seem to get lost between offices and it saves time if you have your own copies. If you don't understand something, ask. Don't let the doctors put you off. We often found nurses, especially oncology nurses, to be our best sources of information. One member of our cancer support group printed out some of the things she found online and took them with her to the doctors' offices to ask about them. She seemed to feel that that worked for her. My husband depended on me to do the research and ask the hard questions. He just couldn't do it. Often I knew the answer but needed to hear it from the dr and so did my husband. Don't be discouraged. My husband had stage 4 colon cancer with mets to the liver and lymph nodes. He lived for 6 years after the initial dx. Others here have lived much longer. With new discoveries and protocols people are living longer, some might even be considered cured. You are in for a real fight with many ups and downs. Hang on to each other and reach out to friends and family for support. You can also PM me anytime. Fay

Fabs4ever

grandmafay said:

Answers
I found during my husband's six year battle with colon cancer that I had to become his advocate. I did find a set of questions on the American Cancer Society website. I used them early on. I also did research and asked the doctors to explain what I found. Be sure to ask for copies of all test results. They often seem to get lost between offices and it saves time if you have your own copies. If you don't understand something, ask. Don't let the doctors put you off. We often found nurses, especially oncology nurses, to be our best sources of information. One member of our cancer support group printed out some of the things she found online and took them with her to the doctors' offices to ask about them. She seemed to feel that that worked for her. My husband depended on me to do the research and ask the hard questions. He just couldn't do it. Often I knew the answer but needed to hear it from the dr and so did my husband. Don't be discouraged. My husband had stage 4 colon cancer with mets to the liver and lymph nodes. He lived for 6 years after the initial dx. Others here have lived much longer. With new discoveries and protocols people are living longer, some might even be considered cured. You are in for a real fight with many ups and downs. Hang on to each other and reach out to friends and family for support. You can also PM me anytime. Fay

Staples Come out today.
I
Staples Come out today.

I am afraid there is an infection where his JP drain was. Does it stop? I feel so helpless. I can't do anything for him. He is miserable and I can tell that just by looking at him. He doesn't complain, but when he does I know it's about as bad as it can be.

grandmafay

Fabs4ever said:

Staples Come out today.
I
Staples Come out today.

I am afraid there is an infection where his JP drain was. Does it stop? I feel so helpless. I can't do anything for him. He is miserable and I can tell that just by looking at him. He doesn't complain, but when he does I know it's about as bad as it can be.

Hardest
I think the hardest thing for us as caregivers to take is when we aren't able to fix things, make things better. We hate to see our loved one sick and in pain. Feeling helpless is so frustrating. Just remember that you are doing the best you can. That is all you can do. Fay

Fabs4ever

grandmafay said:

Hardest
I think the hardest thing for us as caregivers to take is when we aren't able to fix things, make things better. We hate to see our loved one sick and in pain. Feeling helpless is so frustrating. Just remember that you are doing the best you can. That is all you can do. Fay

Staples are out...
Was put
Staples are out...

Was put on Cipro. Infection where jp drain was.

Headed to Pittsburgh Saturday for Pet Scan and some other tests.

Then Dr appointment on Monday in Pittsburgh as well.. Maybe then we will have a plan of action and get some answers.

Thx for all the support!!!! I so much appreciate it!!!

I am still learning this site, so be patient.

grandmafay

Fabs4ever said:

Staples are out...
Was put
Staples are out...

Was put on Cipro. Infection where jp drain was.

Headed to Pittsburgh Saturday for Pet Scan and some other tests.

Then Dr appointment on Monday in Pittsburgh as well.. Maybe then we will have a plan of action and get some answers.

Thx for all the support!!!! I so much appreciate it!!!

I am still learning this site, so be patient.

You are doing fine. You're
You are doing fine. You're right, a plan of action does help. The unknown is always scary. Sadly, even with a plan of action you will still be left with too many unknowns. Just hang in there. Take this a day at a time, sometimes even a minute at a time. Ask your questions and keep asking them. It's ok to be a little pushy which is hard for some of us. I'll be thinking of you both during this waiting time. Fay

Tina Blondek

Fabs4ever said:

Staples are out...
Was put
Staples are out...

Was put on Cipro. Infection where jp drain was.

Headed to Pittsburgh Saturday for Pet Scan and some other tests.

Then Dr appointment on Monday in Pittsburgh as well.. Maybe then we will have a plan of action and get some answers.

Thx for all the support!!!! I so much appreciate it!!!

I am still learning this site, so be patient.

Welcome
Hello Fabs4ever and welcome to you and your husband. Wow! have you guys had it rough. So glad to read that you are going to Pittsburgh. Hopefully to UPMC. There is a dr. there named Dr. Luketich. He is very highly recommended. He deals mostly with esophageal cancer, and is a thoracic surgeon. I am sure he also knows about Liver cancer, and if he does not know, then he can recommend someone to you. My dad passed away in March 2010 from esophageal cancer with mets to the liver. I am appauled at how you and your husband are being treated where you are now. Get to Pittsburgh, and get there fast! We will be thinking of you and praying for both of you. Keep in touch.
Tina in Va

here4lfe

Fabs4ever said:

Staples are out...
Was put
Staples are out...

Was put on Cipro. Infection where jp drain was.

Headed to Pittsburgh Saturday for Pet Scan and some other tests.

Then Dr appointment on Monday in Pittsburgh as well.. Maybe then we will have a plan of action and get some answers.

Thx for all the support!!!! I so much appreciate it!!!

I am still learning this site, so be patient.

Good luck on Monday. ASK
Good luck on Monday. ASK QUESTIONS!
My wife takes Atavan for her Pet scan.

Best