a little bummed

terril · May 2006

Hi everybody!!!
I have had a recurrence of my colon cancer in my pelvis this past December. I have a tumor on my loin muscle (psoas) and a small one on my small intestine. I have had 9 rounds of CPT-11, 5FU, and leucovorin. My doc told me the tumors cannot be resected or radiated. He also told me there is no cure. I guess we just hope the chemo will control the tumor growth. My last CT showed no change. This was done after 6 rounds.
I am just bummed with this news. I just pray for remission. Does this mean I will be on chemo for the rest of my life? I have to talk to my fellow semi colons. I had treatment yesterday and I am feeling like hell today. By the way, I have no pain with these tumors. This is a blessing. I pray for all of us as we battle the beast. Terri

Jen28 · May 2006

Hi Terri,

I'm sorry that your CT scan didn't show a change in your tumors. I'm no expert, but if it were me, if I hadn't already gotten one, I'd want a second or third opinion regarding my treatment. I'd want to know whether it was time to try some of the other chemo drugs, and I'd want to hear from someone else that resection/radiation was not an option.

I'm sorry that treatment has left you feeling like crap. Chemo just sucks. I hope tomorrow is a better day for you. It might help to see if a friend or family member can do something to brighten your day a little--maybe rent you a movie and pick you up something cozy to wear while you're recovering from treatment?

Sending good thoughts your way.
Jen

JADot · May 2006

Hi Terri:

I am so sorry to hear that you're bummed.

I wish I was there with you. I would have taken a swing at the doctor for telling you that there's no cure! Don't listen to him!

I have an aunt who's 82 now. 4 year earlier she was diagnosed with late stage pancreatic cancer. Her doctor gave her at most 9 months to live. Guess what? 4 years later she just became a grandmohter last weeek! When she was told that radiation wasn't an option, she went to China and had the gamma gun treatment, got rid of her small recurrent tumor.

I agree w/ Jen, I think 2nd and 3rd opinion are badly needed. There are two excellent cancer centers near where I live, at UCSF and Stanford. Would you like to come to UCSF for a second opinion? They are the best on this coast, and one of the top in the country. You can stay with me and my husband for as long as you need to get things sorted.

Take good care while you're recovering from your treatment today. I know it's easier said then done. I have my #7 tomorrow so I'll feel just as hellish tomorrow.

Terri, I am thinking about you, rooting for you and beaming you some healing vibes.

JADot

alihamilton · May 2006

JADot said:
Hi Terri:

I am so sorry to hear that you're bummed.

I wish I was there with you. I would have taken a swing at the doctor for telling you that there's no cure! Don't listen to him!

I have an aunt who's 82 now. 4 year earlier she was diagnosed with late stage pancreatic cancer. Her doctor gave her at most 9 months to live. Guess what? 4 years later she just became a grandmohter last weeek! When she was told that radiation wasn't an option, she went to China and had the gamma gun treatment, got rid of her small recurrent tumor.

I agree w/ Jen, I think 2nd and 3rd opinion are badly needed. There are two excellent cancer centers near where I live, at UCSF and Stanford. Would you like to come to UCSF for a second opinion? They are the best on this coast, and one of the top in the country. You can stay with me and my husband for as long as you need to get things sorted.

Take good care while you're recovering from your treatment today. I know it's easier said then done. I have my #7 tomorrow so I'll feel just as hellish tomorrow.

Terri, I am thinking about you, rooting for you and beaming you some healing vibes.

JADot

Terri, I hope you are feeling better today...I can imagine how discouraged you are feeling but as others have said, do not give up. Try to consult someone else. When I read JADot's post, tears came to my eyes. The kindness and compassion on this board are so overwhelming sometimes. I am always so moved by the closeness of the "family" here. Keep up the fight!

Take care,

kerry · May 2006

Get a second opinion.....find a doctor who specializes in colorectal cancer and check out major cancer centers near you.

You'll be in my prayers.

Kerry

mwomack · May 2006

Please get a surgical opinion as well as a radiation oncologist's opinion. My husband had a recurrence to the pelvis (presacral space). The medical onc. did not think it could be surgically removed (it was however margins were not clear). We were sent to radiation onc. because of the margins not being clear BUT the radiation onc. said he needed pelvic radiation whether or not the margins were clear. He says "you can't forget this is a recurrence." He has treated this rather aggressively with full pelvic radiation with "coning in to prescral space the last two weeks." He has 3 treatments left of 7 weeks and 1 day (36 treatments). The rad. onc. also would not do the radiation without a light dose of chemo that is to make the radiation more effective. In other words, our experience tells us that each Dr. knows their area and not much outside it. I don't think the med. onc. even has enough of an idea to recommend a consult with the other specialists.

In hindsight, I really regret that we did not get a consult with a radiation onc. from the very beginning. My husband's was classified as Sigmoid Colon but it was very low, and very well could have been classified recto-sigmoid. I have been reading lately that in some cases, radiation is warranted in the treatment of recto-sigmoid. A consult really costs very little, and is worth a lot in the end.

Please get to a surgeon first, and then to a radiation oncologist.

KathiM · May 2006

Let me at your doc!!! 'No Cure' my behind! I say NEVER tell us ANYTHING that will crush our hope!!! I agree with others, maybe you need to seek a second opinion...
I found a specialist,and if you saw my post, I got some VERY good news Tuesday!
In any case, Terri, find something to laugh about...a funny movie, your pet doing something stupid...a funny show on TV...I say that my cancer gave up because I made so much fun of it!
With very big hugs to you, Kathi

suzannchili · May 2006

Get a second opinion!!! I don't like the first one at all. You are in my prayers!

Betsydoglover · May 2006

Hi Terri -

I am so sorry your CT shows no change. But SHAME on that doctor for telling you there is no cure.

You really do need a second opinion - actually perhaps multiple second opinions. Talk to a cancer surgeon and a radiation oncologist. Also, if your own medical oncologist is not actively reaching out on your behalf, find one who will. You want someone who will be, among other things, looking for ways to get you into clinical trials. If you aren't getting this, try to get to a major cancer center in your area for a consultation. I don't know where you live, but having recently been evaluated at NIH for a clinical trial, I know they have many services to provide to out of area patients and being in DC area I'd be more than willing to help you out if coming to DC becomes a possibility.

Here's the NIH website:
http://www.nih.gov/

and here's the National Cancer Institute at NIH site
http://www.cancer.gov/

You can search for clinical trials. But realize they also study so-called "natural disease process" so if you have an oncologist who knows how to work the system there may be opportunities for evaluation (and treatment) by a real set of experts.

I know this is overwhelming and I am not necessarily knocking your oncologist, but if there is one thing I have learned, it is that we have to look out aggressively for ourselves.

I wish you the best.

Take care and let me know if you need more information.

cherriann · May 2006

hi terry,
I HATE CANCER!!!!! im so sorry to hear your news but like everyone says go for the second opinion and fight like mad. my thoughts and prayers are with you.
cherri

terril · May 2006

Hi everybody!!!
I just want to thank you all for your kind comments. My doctor is considered one of the best, but he is also one who is very careful about words. He is known to not be very "fuzzy," but he has saved lives. My other onc who did the surgery said the tumor was inoperable also because of all the nerves it has settled in. These nerves are involved with walking and breathing. I will keep my etes out for some other options. The plan now is to do chemo...blast the hell out of the tumors. My plan...maybe no cure but remission forever. Thank you again for your support. My prayers and thoughts to you all. Terri

jana11 · May 2006

You can never go wrong with a second opinion. A good doctor will NOT take offense to it. Look around. Try one of the major cancer centers.

The second opinion may agree with your doc, but you must find out for yourself.

BUT - either way you soon to have faith in your doctor's knowledge; which is VERY important. Hang in there and fight the good fight.

We are here for you.. jana

mwomack · May 2006

terril said:
Hi everybody!!!
I just want to thank you all for your kind comments. My doctor is considered one of the best, but he is also one who is very careful about words. He is known to not be very "fuzzy," but he has saved lives. My other onc who did the surgery said the tumor was inoperable also because of all the nerves it has settled in. These nerves are involved with walking and breathing. I will keep my etes out for some other options. The plan now is to do chemo...blast the hell out of the tumors. My plan...maybe no cure but remission forever. Thank you again for your support. My prayers and thoughts to you all. Terri

This may be a dumb question-but how do they know what nerves are involved? The presacral space is/was a high risk surgery because of all the nerve roots and blood supply in the area. However, our surgeon told us he could not tell us anything (whether it was operable) until he went in (laporascopically) and looked. He was scheduled for lap. exploratory for his surgery and it was about 3 1/2 hours into the surgery before they called from the OR and said they were going after the presacral mass.

He even said that from the PET/CT scans sometimes they have a hard time finding the mass and have to actually do measuring from a landmark (kidney, etc.) to even locate the actual mass. He says all the PET/CT can do is give them the general location. We were told in my husband's situation that if the mass was below the anastomosis (reconnection) then that is "no man's land" and he would not be able to remove it, but he thought from the scans that is was above. Guess what, it was in "no man's land" and they got it.

Also, the medical onc. really knew nothing about the radiation part. I guess he did know enough to set up a consult, and pick one specific Dr.

Don't rule out radiation - it has not been that bad (and even my husband would tell you that

).

a little bummed

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