Oncologist vs. Surgeon

Diane, that sounds like a great start. If you use our search engine at the top of the page and type in Moffett Ctr or Dr. Kim you may find some posts on other people who went there. Good work, girl!

Dianne,
Sorry I’ve been “away” from the board for a while and as many know it takes a long time to get caught up on everything.

I had surgery Apr 09, with clear margins around surgery and lymph nodes. I DID have lymph node involvement however. My surgeon told me “they usually don’t do chemo in this type of cancer”. His words! I met with an Onc. who recommended chemo “as a precaution” as to “better say that we did rather than to wish that we had” kind of thing. My first CTs were cancer free….the next set showed metastasis and return of tumors. I didn’t see the Radiation oncologist until after the metastasis showed up, and then HE asked ME “why wasn’t radiation done after surgery?”

After gaining much knowledge on this board, I have learned to ask tons of questions and do everything that you can and that is available, as the onc. more-or-less, better safe than sorry. Even though he didn’t go far enough in his thinking for me.

Good luck, and keep posting your progress. I will be going to Mayo Rochester soon too. I look forward to a new opinion.

Linda

Dianne, may I ask why you don’t want the visits to see an Oncologist? He is the main Doctor in charge of your life with CC. He will watch you like a hawk so that if anything does return you catch it immediately. He is the one who will order tests, LABS, chemo if needed and generally be the one to help you make decisions. Actually most of us have a “team”. Our GP, ONC, Surgeon, Radiologist and if needed a Gastro guy. All stay in the loop and receive all test results and then if the occasion arises they can come together to agree on a game plan. There is no better feeling than to have the ‘right’ team behind you.

Dianne,
Yes, I’m still seeing my Onc. – well what was supposed to be every six months. But this last year, I’ve seen him way more times than I like to think about due to duct blockages and infections. CC seems to be the disease that ‘keeps on taking’. We think we have that worked out now and we can go back to “routinely”.

And Lainy my dear, you can call me anything you want without apology. “32” huh? It must be that full head of hair – don’t you think?

Love, Grace and Peace to the CC familly…

bob

Hi Dianne & welcome to the site from me as well. I thought I’d throw in my twopenneth for what it’s worth as we seem to have a similar situation. I’m 50 by the way.

CC was initially suspected with me back in Dec 08 but not finally diagnosed until May 09 after surgery when the blockage in my bile duct turned out to be a stricture but there was a tumour found in the cystic duct.
I had a resection of the bile duct plus a Roux en Y.
The tumour was T2 N0 & I’ve had no radiotherapy or chemo as this was judged to be unnecessary with the result of the histology.
I’ve queried this with the surgeons, who I see (unfortunatley I’ve had problems this year with scar tissue resulting from last year’s surgery- no evidence of tumour recurrence to this date) & have 6 monthly CT scans. As I’ve also now had a PTC plus CT scan plus more surgery I can only think the docs would’ve found anything nasty lurking.

As I understand things, some folk have chemo & the tumour recurs, some folk don’t have chemo & stay clear.
So, it’s a bit of a toss up. I think the answer is to get any info you can & then try to reconcile yourself to whatever you (& docs) decide is right for you.
There’s no guarantee with anything in this life, we may all get hit by ice falling off an aircraft or some other less freaky accident – we may get a recurrence & have to be treated, we may not.
I was told to just get out there & get on with my life, which I think is pretty good advice. Worrying about it all won’t help but I, as with everyone else on these boards will know that is easier said than done.
I’ve found there are times I cannot bring myself to read some of the posts as I start thinking about what could have/might/could still happen and for me that’s not healthy!
Good luck with your investigations, the support you will get form everyone on this site is brilliant, only the best people get affected by this disease!
Best Wishes, Val

Bob, so very sorry, I called you Bob32 instead of 32coupe just above!!! I must have been thinking of your age!!!

Hi Linda. Yes Teddy was totally clean after his Whipple. Those who have Whipples (Cancer is mainly in the bile duct and has not gone to the liver) are treated different than those who have the CC start in the liver. Teddy’s CC never reached his liver. When the CC returned, it returned to where his Duodenum used to be. He had NO symptoms, it just showed up on his PET Scan. Fortunately it was ‘zapped’ with Cyber Knife. He was told by 5 doctors that Chemo would not help for the way he had CC. On the other hand we have many who have successfully completed Chemo. It seems that anything related to CC requires huge decisions and the only thing we know for sure is that we are playing a guessing game. I have learned to listen to my gut feelings and it has carried us through these 5 years. The best is to read up as much as you can. Especially on our site here under older posts.
On our site here we are all courageous survivors no matter for how long but we do have some who have done Miracously well. There is Bob32 who is in his 13th year and our beloved JeffG went 10 years. Teddy 5, and others that I just don’t recall with my old brain right now. That would be a great listing if someone could post some of our survivors who are over 5 years.
The reason survival is mininal is not so much the disease itself but the fact it never shows up until it’s almost too late for treatment. This is why you have been getting respones to see another Oncologist.
RE: House remodeling? That is up to you however, remember one thing, as long as you breathe you are still living, so live it to the fullest.