Oncologist vs. Surgeon
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DIANNE, I am very concerned yet that you are not seeing an Oncologist until January. Teddy had clean margins and still was seen by an Oncologist every 3 months! We never know what this CC is going to do, it is a total mystery with everyone. Perhaps your Surgeon or GP can recommend an Onc in Florida or perhaps you know people there who could do the same. As to your question about Member Status: A Member is someone who has up to 50 Posts. A Senior Member has over 50, An All-Star has in the hundreds and a Moderator (there are 4 of us) welcomes new members and tries to give answers to all Posts. I came aboard after Teddy’s Surgery 5 years ago and am totally addicted to this Board. Now with Teddy in Hospice it has also been my eward. So you see I do it for selfish reasons as I get so much out of it myself. I am constantly meeting through this site, different people from all over the World who come together with Love and Careing trying to help others in the same plight. Yep, this is probably the most selfish thing I have ever done in my life because of all I get back from eveyone here.
Thanks to you all for your input. Linda, did you have clean margins and negative lymph nodes? My doctor (the surgeon) said that since I had both I didn’t need to see an oncologist. I see him again in January and will definitely ask to see an oncologist and also a radiation oncologist at that time. My problem is my surgeon is at Mayo in Rochester, MN and I’m a snowbird leaving for FL next week. How long ago was your surgery? And could I ask about the titles – what does “all star”, “senior member” and “moderator” mean as compared to “member”? I see my PCP on Monday before we leave and I will run all of this by him.
DianneDiane,
I would most definitely ask for a referral to an oncologist and possibly a radiation oncologist too. I had surgery, and after my surgeon felt I had recovered enough from surgery, he released me to an oncologist. The oncologist recommended CT scans every 3 months, but I also saw a radiation oncologist after tumors returned. The radiation oncologist actually asked me “why didn’t you have radiation therapy after surgery?” My answer to him was I didn’t know, you need to ask the oncologist. The radiation oncologist felt that I should have had radiation after surgery, but since I didn’t see him until after a reoccurrance, I didn’t know better.
That’s why I’m telling you now. It doesn’t hurt to get all the opinions first and then make decisions based on their information. If you don’t get that information and those opinions, you can’t make any information decisions of your own.
Good luck with everything. Oh and by the way….my PCP said he would like to be kept in the loop. Since he told me that, I request all referrals through him and ask him everything. It’s nice to have one person centrally located to ask all the questions of, or get referrals to those that might know more when you don’t know who to start with.
Linda
Diane,
I would join with others recommending you ask about the inclusion of an oncologist in your care – especially one with experience with CC. My surgeon brought an oncologist in immediately after surgery. I had chemo and radiation and afterwards, I saw him every two months for the first two years.God Bless you!
bob
After my liver resection I had cat scans every three months along with a visit to my surgeon at the time of the scan. I did see an oncologist once after my surgery but he recommended no chemo since my margins were clear and I had no mets. I still have scans every 3 months and see my surgeon on a regular basis and its been 1-1/2 since my surgery. Hope this helps.
Betsy
Diane
So glad u found this site and to hear of your successful surgery. I had removal of my right lobe of my liver and resection in Jan 10 then 6 months adjuvant chemo. My surgeon sees me every 3 months right now. My surgeon orders ct of chest and abdomen then I go to his office which is in the hospital and he brings the results right up on the computer and reads them himself. I asked if my oncologist should order next one and he said why would he he can’t read them. I also see my oncologist once a month since I just finished chemo in August but, I will see him after all of my scans. My oncologist of course was involved with all of my chemo. I feel having both of them reviewing my case regularly gives me a sense that I am receiving the best of care. Regarding your back pain if you have a primary dr. perhaps they could order some blood work for you to have liver function tests.
Best of luck to you I will keep u in my thoughts and prayers.I think any pain should be checked out. With this type of cancer, you never know, and better safe than sorry.
Sorry i forgot your back pain, Dianne. My Mum also had back pain after the surgery, however it is due to the nerves and also the scar from the operation. Hope it helps.
Minh
I can’t believe I found this website and I’ve been reading postings for over 3 hours! Thanks so much for all of your responses….I will call my surgeon tomorrow and mention my back pain and ask for a referral to an oncologist. Margaret, I tried to find the journey for your husband, but was not successful. It’s probably because I’m way too tired. I’ll try next time.
Dianne….I would also like to welcome you to our site. Your question brings to mind one of the concerns voiced by a speaker at a medical conference I had attended; that being the adjuvant care of patients following cancer treatments. Who do patients turn to with their daily concerns and questions? I have been told that some cancer centers are in the process (or, may already have in place) doctors who, specifically tend to these patients. You may want to inquire within your community about such services. Also, do you have a GP? I believe it to be standard procedure for the referring physician (the doctor, who referred you to your surgeon) to be in possession of your medical records. If you are experiencing back pain then you should be seen by a doctor. You might want to call either, the surgeon or, the referring physician. Remember, you are in control and you have the right to search out second or more opinions. And, if you choose to consult with an oncologist, then you should have the right to do so. Good luck and please, keep us posted.
Best wishes,
MarionHi Diane,
My Mum after having surgery also went to see an oncologist and had adjuvant chemo. Of course, no one can confirm that if we had chemo, the tumor would have never gone back. We just do our best. Normally, a surgeon seems not to have many things to work on the patient after surgery, so you may move to the oncologist to make sure that he could find out something out of the liver or bile duct area at which the surgeon is really familiar with. Mum had CA 199 elevated since last 6 months and is going to have chemo again next week. So far, we have not seen the actual reason yet. the Dr said it could be recurrence. Anyway, we will still have hope.
Best wishes for you.
MinhWelcome, Diane to our wonderful family. Congratulations on already being a survivor of CC. When my husband Teddy had his WHIPPLE 5 years ago he went from the surgeon to the Oncologist who “keep watch”. He had appointments every 2 months and when the CC returned he went every month. I had my own rare cancer a year ago and had a GIST tumor. I went from the surgeon to the Oncologist for care and I see him every 3 months now. Usually the Surgeon and the ONC work hand in hand. I would call the surgeon and ask him if you should be seeing an ONC. If he says no, I would get another opinion, but give him the benefit of the doubt first since he apparently did a good job with the surgery.
We do recommend 2nd opinions often, especially if one does not feel right about something. Good luck and please keep us posted.My thought for you Dianne is that it NEVER hurts to have a second opinoin – if you have any doubts and fears, PLEASE schedule a visit with an Oncologist! Even if the surgeon feels that he got all the tumor and the nodes were ‘clean’ it would not hurt to seek an oncologist’ opinoin.
My husband Tom also had ‘clean margins’ and presented 18 months later with a new inoperable tumor in one of his remaining bile ducts. His new oncologist ‘team’ are now saying that if he’d had chemo after his resection in 2008, he may not be in the circumstances he is in today. You can read about his ‘journey’ under my login name….(My husband and Cholangiocarcinoma, and My husband and Cholangiocarcinoma – Part 2)
I would get all your records from the surgeon and run (not walk) to an oncologist for a 2nd opinoin! Also, look for someone who has experience with CC (which may be hard to find) and have that oncologist review your records!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
I am new to the discussion board. I am 58 and was diagnosed in Dec. 09 with cholangiocarcinoma. I had roux en y surgery in Jan. and was fortunate that the surgeon said he thinks he got all of the tumor and the nodes were clean. I had a good 6 month checkup in July. What I am wondering is if it’s normal to be followed by the surgeon instead of being turned over to an oncologist. Also, I wish I were seen more frequently than every 6 months. Now I am having back pain and worry…but am not scheduled for a checkup until Jan. 2011.
I am so happy to have found this website!
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