Scanziety and 2nd Opinion

[Jennedy]

I had my Chest CT and abdominal CT done this morning at 8:30. This is 3 wks after my 4th round of the triplet. So far, I have been able to ignore the results in the portal. Hubby and I decided we would rather wait. Although, I'm still thinking about it. Trying to stay busy.

I also decided that this is a good time for a second opinion. A friend is being treated for liver cancer at The James Cancer Center at Ohio State and got me 2 names of LC specialists up there. I like my oncologist, but feel like I'm going All In on a poker hand without looking at the cards. My question is, do I tell him first? Or just make the appointment?

Thanks

Jenny

[LexieCat]

I see no reason to tell him--it really doesn't affect him. Another opinion never hurts. And if you decide to switch, it's up to you whether you communicate directly with him--I just informed the people who schedule my appointments that I was transferring my care to Penn. No biggie. It's your life and your health on the line, not theirs.

I'd suggest waiting till you get your scan results--the consulting doctor will want to see the images, themselves, as well as the reports and your other records. And you will want to know what your current oncologist proposes, going forward, so you can compare.

[Jesse L.]

I really do admire your patience, but I know too that I'd probably wait on the results as well. I try to keep it uppermost in my mind that no amount of hoping, wishing, or praying is going change what is. Whatever may come is what I or anyone else will have to deal with in the future. The future conversations either consist of plan B or waiting till the results of the next scan. 

As to the second opinion, you're entitled to it and if your oncoligist is worth anything at all, they should welcome the input of a colleague. I would be worried if they WOULD have a problem with that. So, either way you would want to do it would be fine in my opinion. One of the things I've found though is that there's kind of an overall prescribed mode of care dependent upon a particular cancer diagnosis and while there is some deviance on small things, all oncologists kind of stick to the script. Maybe that has to do with studies showing the best care for the best outcome...I really don't know, but by all means seek a second opinion if that's what makes you comfortable. 

I really do wish you the very best on your scans... And please try to relax; keep it in your head that you will be fine no matter what. 

[LexieCat]

1 hour ago, Jesse L. said:

One of the things I've found though is that there's kind of an overall prescribed mode of care dependent upon a particular cancer diagnosis and while there is some deviance on small things, all oncologists kind of stick to the script. Maybe that has to do with studies showing the best care for the best outcome...I really don't know

Going outside the "standard of care"--absent a very good reason--can expose a physician to liability. After you've gone through the first, second, third lines of treatment, they can be a bit more flexible because the standard isn't working. But if a doctor just believes strongly in surgery, for example, and does it in situations where it's not recommended under the guidelines, and then the patient has a bad outcome, the doc is exposing him/herself to liability for malpractice. 

[Jennedy]

This is my second line of treatment. I'll schedule something Monday after I've had the weekend to digest.

Last time I had a scan, it was done on a Wednesday and my appointment was Friday. I looked Wednesday night. Two of my BFF are nurses, one in charge of neuro ICU, and one an oncology nurse at  Cincinnati Children's Hospital. I sent them the results in an email with the subject line "even I know this is bad". When 2 of your oldest and dearest friends with medical knowledge reply "OH, Jen, I'm so sorry" it confirms all of your fears. But it did give me a chance to digest the information and ask some intelligent questions.

[ChiMama]

Now that scan results are going directly into my online portal I look at them right away.  After 5 years being on the cancer journey and a lot of research, I more or less know what things mean - and like you say it gives more time to digest and gather questions.

[TJM]

There is zero chance of me not looking. 

[Jennedy]

My husband is waffling. But I think we will wait. 

[LexieCat]

I've learned not to even look at the portal until after my appointment. That's just me, but radiologists usually don't see the big picture--that's the oncologist's job. I just feel like it's more accurate--good or bad--when I get it from the oncologist.

[Jesse L.]

I know there's a lot of different opinions on the matter, but I'll be more than happy to wait for the oncologist to decipher every last detail. That is especially true when it comes to scan results...what is schmutz or not schmutz, what might it be hiding, is that little spot significant, and on and on, etc., etc. Then too I want the oncologist to think solution, next step, plan of action, etc. if necessary before I even talk to him/her. 

I remember what Lou once said; nothing I wish for, pray for, or want to have happen will change reality. Whatever it is I'll roll with the flow for as long as I'm allowed to be here. Years ago my brother died unexpectedly at the age of 14... I'm sure he didn't want to go, but he did. Ever since then I've considered every next day a gift and if I don't have the next day, I'm happy for what I've had. Believe me, it was a lot more than my brother had...

However, I wish everyone out there a long life if that's what you want. Just know that not everyone gets a choice in the matter.