Couple of questions about an Oncologist

[butrflies]

Hi everyone!

Went to see my surgeon last night for a checkup and he said everything looks good and healing well!!! Pathology reports were back and I do have stage 111c and now need to find an oncologist. I'm not even sure where to begin, was hoping that my surgeon would of recommended someone but he said he would leave that up to my primary doctor although with my insurance i don't think she has an opinion on it, i just need a referral from her. Which brings me back to square one.
Any suggestion on finding an oncologist? Also i was thinking of getting the chemo done locally but getting a second opinion from U Penn, Sloan or Fox Chase. I live in NJ so these places are pretty close but not close enough to go once a week. Has anyone had any experience with any of those or any experience with a second opinion?
Also is there a standard treatment for me at this point?

Thanks for any help!
Amy

[Erika]

Hi Amy,
I'm a little confused why you have not been referred to an oncologist by this point if you were diagnosed over a month ago. And it is extra strange that your surgeon hasn't and can't recommend someone. Does anyone else think that is strange?
I'm also curious- how were you diagnosed? Have you had a CT scan?

Do you know anyone who has had cancer and could recommend someone nearby? Or you could at least start by finding out who is affiliated with the hospital you attended and who has experience with colon cancer patients. Penn, Sloan, and Fox Chase are all good places and would recommend at least a second opinion, if not primary, opinion from one of them. I can speak personally about Fox Chase as I was treated there. Unfortunately my medical oncologist is no longer there, otherwise I would specifically recommend her (she's now in private practice in the area). I was happy with my treatment at FC, and if heaven forbid anything happened again, I'd make the 7 hour drive back there. I have to admit, I'm biased toward comprehensive cancer centers in part because I was 22 when I was diagnosed at stage IV and I know that I would not have received the same therapy at my small local hospital. At 31 and stage IIIc this is something you may want to consider, but I'm not qualified to tell you what types of treatment you should have.
You can go to your primary with a name in hand and ask for a referrel to that doc. Call the oncologist or facility first to make sure he or she is accepting new patients and can see you asap. Also make sure that he/she participates with your insurance. Get copies of all your records (and films) if you haven't do so already to bring with you.
I'm sure you are having to digest a lot of info, but the sooner you get to an oncologist who can answer your questions and talk specifically about your situation the better.
Hope this helps some.
Best of luck,
Erika

[missjv]

hi,
well in my experience i wished i had gone to a major cancer center 1st rather then an onco that was recommended to me because it was awful. the lady told me i would just be on palliative chemo until it quit working then spouted off statistics to me as to when i will die of this disease. i am stage 4 with liver mets. i then went to a large cancer center here in florida and everything was different yes i had stage 4 cancer but the outlook and optimism was so different. now on monday the 16th i have an appointment at sloan kettering in new york to see surgeon about liver surgery. i had 6 chemos and stuff shrunk away off my liver so i don't know if surgeon can even do anything at this point but im affraid it will come back. anyhow go straight to sloan if you are close for 1st onco visit. if you do need chemo you can have it done at your local hospital under the care of a dr from sloan. it is worth going take it from someone who was given no hope by a doc who was used to treating 80 year olds i am 40 and was treated like i crawled through the door holding my liver in my hand doctors at big cancer centers like sloan are up on all the new drugs and treatments because alot of research is done there, also they see so many different cases and they are the experts so that what i would do 1st and then get treatment locally, i wish i would have done it that way. good luck!
missjv

[butrflies]

Thank you both for your helpful responses. How soon after surgery did you start to receive chemo?

Did you see on oncologist before surgery, I’ve seen some post where people did receive chemo before surgery?

My surgeon said he didn't want to refer me to anyone and get in the way of who my primary care doctor would refer me to and who she may feel more comfortable working with, is what I got from what he said. He did suggest the second opinion by one of the three I mentioned earlier.

Once I was diagnosed everything happened within a month or so.

Went for colonoscopy September 7, the next two weeks consisted of another cat scan (I’ve actually had 3 in the passed year which never really showed anything) then blood work and consultation with surgeon. There was almost one week waiting for a time slot at one of our local hospitals. Does this sound like a long time frame? I know my dad went to the emergency when he had colon cancer and they kept him and did the surgery that night or next day.

my tumor was found during the colonoscopy and not during any of the CTs. it was located in the upper part of my ascending colon, what the last CT did show was swelling at the bottom of the ascending colon because of the blockage of the tumor and that is what they saw the very first CT I had back in march when I ended up in the emergency room for food poisoning.

Thanks again, I'm sooo glad that I found this site where I can talk to people who have gone through what I'm going through!
amy

[margotmagoo]

Hi Amy,
I was diagnosed in January at the age of 40 with Stage IIIC. I started my chemo 4 1/2 weeks after surgery. The sooner the better I was told. My surgeon set me up with my oncologist. I had someone do research on my behalf to ensure I was receiving the best and most current treatment because I did not have time to seek out second opinions. She is a medical researcher and had access to doctors and cancer centers that I would not have. I had 12 treatments of Folfox7 over the course of 6 months. I finished at the end of July and since then have been scoped, scanned, and syphoned with clean results. I hope this information helps you.

[Tucduck]

Hi Amy,
The website for Memorial Sloan KCC is www.mskcc.org phone
# is 888 675 7722, they have a new satellite facility in New Jersey.
My wife had the same situation as you, colonoscopy, scans, operation, then the surgeon recommended us to a local chemo center in Scranton which is a group of ten oncologists. If you go MSKCC I'msure you'll find an excellent oncologist. Best of luck in your
recovery & future treatment. I'm the caregiver, my wife has had
colorectal to liver & has been on chemo since 1998. Make sure
you take a buddy (advocate) with you to all consultations to pick
up on what the oncologist is saying & have them take notes,
as my wife was so nervous I don't think she heard half of what our oncologist was saying. Now after seven years she always has
questions for him. Hugs from, herb & vicki...

[Christine]

My surgeon referred me to my oncologist (but I also didn't have a primary care physician). My diagnosis and first surgery happened very quickly (all the same day), but I didn't see the oncologist for almost 6 weeks. Then I didn't start chemo for over two months after that. It was not an ideal situation, but at the time I had no insurance coverage, but a social worker at the clinic (UCLA) was helping me with Medi-Cal (California Medicaid).

I was diagnosis at Stage IV and was completely freaked out by the delays in starting treatment, but after 6 months of chemo, I had a liver resection and am currently clear of any cancer. I just started chemo again (just in case anything was missed), but I should be done before Christmas.

[missjv]

hi,
well my case was strange from the start i had colonoscopy for the heck of it cause colon cancer is in my family i had no signs or symptoms of anything wrong. i had a very small polyp which was positive for cancer and it was removed during colonoscopy which the doctor said it appeared not cancerous. anyhow when path report came back 1 week later it was cancer but the margins around resection and the stalk of the polyp were clear of cancer which led to come back in a couple years for follow up colonoscopy. well i had bloodwork done everything was normal and cea of 2 and then i was lucky enough my dr who thought i was paranoid agreed to cat scan just in case, well luckily i had ct scan done because 3 very small lesions showed on my liver. i was then told noway it could be mets from colon cancer because polyp did not come close to going through wall of colon so they were convinced i had cancer somewhere else so pet scan revealed nothing except liver lesions then liver biopsy confirmed it was from colon. i have no lymphnode involvment so cancer had gotten into my bloodstream. well luckily i was diagnosed had port put in and started chemo all within a 10 day period. i have had 6 chemos im currently showing no active cancer. i am going to sloan kettering monday for consult with surgeon don't know how it will work out because my spots shrunk but i hear that chemo will not cure this cancer and the best way for a cure is surgically removing the cancer from my liver. luckily in my case the cancer just started growing in my liver because i had ct scan 7 months before cancer diagnosis for an ovarian cyst and endometriosis and my liver was fine on that scan so im glad it was found before i showed symptoms of cancer on my liver or gotten real sick. i handled chemo great, my bloodwork was normal throughout chemo white blood cellls dropped some but not alot and red blood cells and platelets stayed normal so my body is keeping up and fighting this crap. im just hoping that the fluke idea of going for colonoscopy to start with at my age was a sign from above that this crap even though it spread was caught at and early time and hopefully i can beat it up and kill it or at least keep it under control and not spread anywhere else. anyhow thats my story but you need to be on treatment now i don't understand why you weren't sent to onco right away, stage 3 cancer can very easily turn to stage 4 which is not good. good luck.


missjv