Firing oncologist?

abrub

Ruffy7 said:

Actually that makes sense -
Actually that makes sense - maybe that's why I felt the "fired" onc wasn't taking my case seriously - no surgery to do. Oh well this hopefully will work out better. So what kind of bloodwork/scans do they do with you, alice, and how frequently?

At this point, CEA about
At this point, CEA about every 9 months; MRIs every 18 months, starting September 2013. (Last CT scan was March, 2012).

I'm ever grateful to my surgeon for keeping me on. We decided it didn't make sense to "break in" a new onc when I've been clear for a few years, and am not in need of treatment. This way, should the time come that I need care again, Dr. Paty will select my onc for me. (He selected Dr. Chung, who was wonderful, but who left MSK about 2 years ago.)

Alice

Brenda Bricco

Fired? No... Demoted? YES
We
Fired? No... Demoted? YES
We relieved the first oncologist of his position as "Captain" because in my opinion he decided that my Husband had no hope and wanted to sell us as much chemo as he could along the way.
We ended up going to UW Madison and went from bleeding internally with many large lesions on his liver to NED (after RFA, colon resection, illieostomy, ebolization and liver resection).
We still get chemo with the local docs but we have the UW calling the shots. We don't know if we will get a cure but how could we not try?
If you have any doubt you NEED more opinions.
Good luck and GOD bless you.
Brenda

YoungerSis62

Brenda Bricco said:

Fired? No... Demoted? YES
We
Fired? No... Demoted? YES
We relieved the first oncologist of his position as "Captain" because in my opinion he decided that my Husband had no hope and wanted to sell us as much chemo as he could along the way.
We ended up going to UW Madison and went from bleeding internally with many large lesions on his liver to NED (after RFA, colon resection, illieostomy, ebolization and liver resection).
We still get chemo with the local docs but we have the UW calling the shots. We don't know if we will get a cure but how could we not try?
If you have any doubt you NEED more opinions.
Good luck and GOD bless you.
Brenda

Ruffy7
Don't know what type of rare cancer you have; but the reaction from your first onc sounds very much like the response from my first onc (that I fired) - but what I'm concerned about, and I do understand every case is different, but you don't mention follow up colonoscopies???

My cancer was found during a routine colonoscopy; I had no symptoms at all, and the cancer they found was in two polyps (out of three) that were removed - so I had re-section. Only follow up recommended was colonoscopy in 6 months time. So I had that - and the gastroenterologist that performed the colonoscopy decided to take a biopsy from the surgical site because he felt it didn look right, and Yes, cancer cells were present - no tumor or mass; so I had another surgery to remove more colon - this time, an onc was assigned to my case. I asked if I should have chemo or radiation since it had come back, and she said no, they are positive they got it all. It was limited to that small portion of colon.

Fast forward 8 months later - had flexible sigmoidoscopy and a tumor about 1 inch, was found at site where they had removed part of my rectum (since slides during surgery showed the cancer had progressed to part of my rectum) and now my anus is involved as well.

I want to point out here that I had CEA blood tests every 3 months this whole time, and my numbers were always within normal range.

I am now at a hospital with a Cancer Center with specialists in every type of cancer. For the record, the surgical oncologist only seem interested in my case at the beginning; he has taken a step back while the chemo and radiation oncologist set me up for therapy. Then the team has determined that my best shot is surgery resulting in colostomy. I had some cysts on my liver, but they didn't light up in the PET. So far, so good...

I tell you this in the hope it will help you...

good luck

Ruffy7

YoungerSis62 said:

Ruffy7
Don't know what type of rare cancer you have; but the reaction from your first onc sounds very much like the response from my first onc (that I fired) - but what I'm concerned about, and I do understand every case is different, but you don't mention follow up colonoscopies???

My cancer was found during a routine colonoscopy; I had no symptoms at all, and the cancer they found was in two polyps (out of three) that were removed - so I had re-section. Only follow up recommended was colonoscopy in 6 months time. So I had that - and the gastroenterologist that performed the colonoscopy decided to take a biopsy from the surgical site because he felt it didn look right, and Yes, cancer cells were present - no tumor or mass; so I had another surgery to remove more colon - this time, an onc was assigned to my case. I asked if I should have chemo or radiation since it had come back, and she said no, they are positive they got it all. It was limited to that small portion of colon.

Fast forward 8 months later - had flexible sigmoidoscopy and a tumor about 1 inch, was found at site where they had removed part of my rectum (since slides during surgery showed the cancer had progressed to part of my rectum) and now my anus is involved as well.

I want to point out here that I had CEA blood tests every 3 months this whole time, and my numbers were always within normal range.

I am now at a hospital with a Cancer Center with specialists in every type of cancer. For the record, the surgical oncologist only seem interested in my case at the beginning; he has taken a step back while the chemo and radiation oncologist set me up for therapy. Then the team has determined that my best shot is surgery resulting in colostomy. I had some cysts on my liver, but they didn't light up in the PET. So far, so good...

I tell you this in the hope it will help you...

good luck

Yes I had a colonoscopy last
Yes I had a colonoscopy last month - all clear - I had to ask for it. First onc never mentioned that I should have another one. Our stories are similar; I am very healthy and went in for first colonoscopy last year where they found a mass at base of appendix - turned out to be appendix cancer. Scary when you realize that scans and blood tests don't catch everything. Guess you try to think the best andhave faith that everythingwill turnout ok.

abrub

Ruffy7 said:

Yes I had a colonoscopy last
Yes I had a colonoscopy last month - all clear - I had to ask for it. First onc never mentioned that I should have another one. Our stories are similar; I am very healthy and went in for first colonoscopy last year where they found a mass at base of appendix - turned out to be appendix cancer. Scary when you realize that scans and blood tests don't catch everything. Guess you try to think the best andhave faith that everythingwill turnout ok.

Colonoscopy...
When my gyn discovered my appendix cancer during my "routine hysterectomy", one of the first questions he, and every dr afterward, asked me was if I'd had a colonoscopy. I'd had a clean one 6 weeks before my dx.

I'm currently on a 3 year cycle for colonoscopies. My second one, 2 years ago, was also clear. However, I know of some appendix cancer patients who are advised to have them every year. I can't imagine a dr not recommending colonoscopies when ANY colorectal cancer is found.

Alice

Ruffy7

abrub said:

Colonoscopy...
When my gyn discovered my appendix cancer during my "routine hysterectomy", one of the first questions he, and every dr afterward, asked me was if I'd had a colonoscopy. I'd had a clean one 6 weeks before my dx.

I'm currently on a 3 year cycle for colonoscopies. My second one, 2 years ago, was also clear. However, I know of some appendix cancer patients who are advised to have them every year. I can't imagine a dr not recommending colonoscopies when ANY colorectal cancer is found.

Alice

Since this last one was
Since this last one was clean gastro dr recommends next one in 5 years - we'll see if new onc will want one sooner than that. Still get impression from many drs they don't know what to do with appendix cancers ...