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2nd or 3rd opinions

vchildbeloved
Posts: 133
Joined: May 2008

I would like to know how to go about seeking opinions from medical professionals outside of my medical organization/hospital. I recently had tests done on liver that came back questionable. My oncologist is saying that he "believes" the spots are only blood vessels. The radiologist however thinks they may be matastisis. All bloodwork, liver enzymes, CEA, are good; but still having pain in right side with no explanation. They don't want to do any more scans right now because of the radiation. Doc says he will check blood again in 3 months, if that looks OK, will just continue to monitor spots (a dominant mass within the right lobe 15x17mm and a second lesion within the left lobe liver 13x17mm.) Because the radiologist and the oncologist have different opinions about the lesions,I would like to get other opinions outside of this medical group. What do I do to acquire that?

Thank you,

Valerie

John23's picture
John23
Posts: 2140
Joined: Jan 2007

The physicians looking at the scans should really be the
radiologist and (in your case) a colorectal surgeon.

A gastrointestinal specialist/surgeon (colorectal surgeon) works
on the intestines and the associated organs. Not just for cancer,
but for any condition that might require possible surgery.

It's those specialists that see the stuff day after day after day;
the oncologist only deals with a cancer condition, and usually
only after the cancer is identified as such.

The radiologist can (and do) make mistrakes. I am in the process
myself, of locating another radiologist (or colorectal surgeon) to
re-read my last scans, since the radiologist that read them had
made a few major errors in the report (I do not want a false
negative, or a false positive)

My suggestion to you, would be to call for an appointment
with a good colorectal surgeon that isn't a member of the same
organization as your present oncologist or radiologist. Tell the
receptionist that you were diagnosed with cancer, and would
like to have doctor ___so and so__ read the latest scans and
provide his opinion. And you might want that surgeon as someone
to call, should you need surgery.

Ask around about a good surgeon...the doctor's office staff,
hospital staff, etc, usually know who's good and who's not.

Good luck, and please let us know how you do!

John

vchildbeloved
Posts: 133
Joined: May 2008

Thanks John, I'll do that. That's interesting concerning who actually reads the scans. I have a good colorectal surgeon; however, I don't know if he's even aware of the scans. I may start with him. I just assumed that because my oncologist was the one who requested the tests, that he was the only one privy to them. How interesting!! I know I've said that already. but I'm stunned. Are physicians usually bothered when you seek answers elsewhere? Not that I care, it's my body, my life we're talking about.

Will let you know.

Thanks a lot,

Valerie

abrub's picture
abrub
Posts: 2146
Joined: Mar 2010

I would run, not walk, from a doctor who insisted that his opinion was absolute, and that he was insulted by me wanting a second opinion.

If the first dr's understanding is correct, it will be supported; if not, you will get more information, or even if the first dr is correct but there are alternate options to treatment, you will learn. I got 3 opinions; threw one of them out because the dr didn't pay attention to my information. I compared the other two, both of which were similar, but presented very different approaches to the treatment of my cancer, and then chose the one that felt right to me. I've had no regrets.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Well, "abrub" already said it...

And I'll add that most physicians welcome other opinions, since
it helps them get new information about new procedures, etc.,
easier and faster than taking time out to go to all the lectures,
conferences, and seminars.

Most oncologists read the radiologists's report, not the actual
scan, where the surgeons usually read the scans and compare
notes with the radiologist. The surgeon uses the scan like we
would use a road map, deciding what route to take, and what
to avoid. They like to see exactly what they will see when/if
they open you up. I don't know about you, but I don't want
some oncologist opening me up, so he can just read the report
as far as I'm concerned....
(haha)

If your insurance allows it, you can order a scan yourself, but
most any practitioner can do that for you according to insurance
guidelines. I had a GP order one scan, and had it sent to my
colorectal surgeon; No problem.

I oughta' add.... You are entitled to the scans; you have paid
for them and they are yours. Yes the insurance pays, but it's
your insurance and you pay one way or the other for -that-.

I have both originals and/or copies of every scan and report
at home. If I decide to go to some other doctor, I grab the pile
and go.

Even if you don't decide to get your own copies, always check
to see if the new doc will get the scans, or if they want you to
get them and bring them. There's nothing worse than finally
getting an appointment and not having what the doc needs
when he needs it.

Seeing your fav surgeon first is a good idea. Make an appointment
and remember to ask if they'll get the new and old scans, or if
they want you to. Sometimes they forget details when making
an appointment.

Good luck, ehh? You'll do fine!

John

vchildbeloved
Posts: 133
Joined: May 2008

I love you guys. Don't want to get all "mushy" about it, but I truly appreciate you and this entire group of people. Much health, happiness, and great success in every area of your lives.

Tender thoughts,

Valerie

taraHK
Posts: 1961
Joined: Aug 2003

I agree with what others have said. Sometimes there are practical constraints with seeking a second opinion (insurance, timing, $, etc.). But, in a perfect world, I would not be interested in working with a doctor (oncologist, surgeon, or other) who wouldn't be open to, if not supportive of, me seeking a second opinion. It is a measure of a good doctor, in my opinion.

Good luck to you in every step of your path --

Tara

Erinb
Posts: 295
Joined: Apr 2010

I agree with seeking another opinion. My husband had a similar situation and we took the scans to OSU since the oncologist doesn't read them himself. I also send every scan to his surgeons in Pittsburgh.

By the way, I love everyone on this board too! The website changed today and I freaked out for a minute until I found it. I couldn't imagine what it would be like without this discussion board.

Have a good day and good luck!
Erin

AnneCan
Posts: 3692
Joined: Oct 2009

Same here! I tried to get in through the ACS + didn't work.

vchildbeloved
Posts: 133
Joined: May 2008

Well, I did request that my colorectal surgeon look at the CT scans performed on my liver showing 2 spots, 1 on the right lobe and 1 on the left. Both are about 15x17mm in size. (1 done in Mar. and 2 done in June). I got a call today from his office wanting me to take a pet scan on Sat. Apparently he sees the need to further look at these lesions rather than to just monitor them as was said by the oncologist, who seems to think that they are just blood vessels. I'm happy for my surgeons rapid response, but also nervous that he would request a pet scan. My oncologist did not want me to have any other scans for 6 months. (too much radiation he says). I just thought that the surgeon would only read the scans, but didn't expect him to schedule a test. I guess I'm looking for some encouraging words to help me with the anxiety I'm feeling over this. I know I did the right thing in making this request to my surgeon. Just praying that the oncologist is right in his opinion that they are blood vessels.

vchildbeloved
Posts: 133
Joined: May 2008

Well, I did request that my colorectal surgeon look at the CT scans performed on my liver showing 2 spots, 1 on the right lobe and 1 on the left. Both are about 15x17mm in size. (1 done in Mar. and 2 done in June). I got a call today from his office wanting me to take a pet scan on Sat. Apparently he sees the need to further look at these lesions rather than to just monitor them as was said by the oncologist, who seems to think that they are just blood vessels. I'm happy for my surgeons rapid response, but also nervous that he would request a pet scan. My oncologist did not want me to have any other scans for 6 months. (too much radiation he says). I just thought that the surgeon would only read the scans, but didn't expect him to schedule a test. I guess I'm looking for some encouraging words to help me with the anxiety I'm feeling over this. I know I did the right thing in making this request to my surgeon. Just praying that the oncologist is right in his opinion that they are blood vessels.

vchildbeloved
Posts: 133
Joined: May 2008

Well, I did request that my colorectal surgeon look at the CT scans performed on my liver showing 2 spots, 1 on the right lobe and 1 on the left. Both are about 15x17mm in size. (1 done in Mar. and 2 done in June). I got a call today from his office wanting me to take a pet scan on Sat. Apparently he sees the need to further look at these lesions rather than to just monitor them as was said by the oncologist, who seems to think that they are just blood vessels. I'm happy for my surgeons rapid response, but also nervous that he would request a pet scan. My oncologist did not want me to have any other scans for 6 months. (too much radiation he says). I just thought that the surgeon would only read the scans, but didn't expect him to schedule a test. I guess I'm looking for some encouraging words to help me with the anxiety I'm feeling over this. I know I did the right thing in making this request to my surgeon. Just praying that the oncologist is right in his opinion that they are blood vessels.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

You must be nervous, your hand is shaking so bad, you posted 3 times!

Seriously......

The thing about getting another opinion, is that if you don't feel
you want to do what they want you to do, you tell them, and you
go get -another- opinion.

I don't like PET scans either. They use radioactive glucose, with
the assumption that since cancer cells use glucose more than normal
cells, they will be easier to locate with that type of scan.

Perhaps.... And maybe it's a good call by a great surgeon, but
it's your body and your feelings, and it's your intuition trying to
guide you. Only you can allow it the procedure, or disallow it.
It's your call, and no-one else's.

You're concerned about the future, just as we all are. We all
have cancer and we all worry ourselves sick with it at times.
But somewhere along the way, we have to shed the fear, and
do what our inner instincts tell us is in -our- best interests.

Sounds campy, huh.

If you're that worried about another scan, call the doc and
let him know your fears, and how adamant you are against
the additional scans. If he has an absolute reason for another
scan; some reason that cannot be cast aside easily, he'll let
you know. You can always postpone the scan, or take a
rain check if you're really worried a bout the scans; the doc
isn't going to curse at you.

You can also make another appointment with another colorectal
surgeon, and get another opinion. It's -your- life. And even paying
out-of-pocket for another opinion is well worth the cash.

Call your doc and tell him about your fears. He may have good
answers for you.

Good luck; let us know the outcome, whatever you choose.

You -will- be OK, regardless.

John

vchildbeloved
Posts: 133
Joined: May 2008

Thanks John. Such kind words of wisdom. I will do just that, call and express my concerns about another scan right now. Maybe he knows or suspects something; either way of that is the case, I would like to hear him say so.

Much regard,

Valerie

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