Topic: Surgery? No surgery?

Hello... the rollercoaster continues. Mum got some bad news today that the cancer seems to have spread to her adrenal glands. She has ICC (one large tumour and lots of little satellites in the liver).

She had an initial scan and both her Oncologist and surgeon felt that the cancer had not spread outside the liver, so the plan was three rounds of gem/Cis and then consider a resection. However, her initial scan was then sent for a second opinion to a more expert CC team, who said that there is evidence of spread to her adrenals - therefore no surgery!

It's so hard to know who to believe! Mum's Oncologist today was looking at the scan and still feels that there is no spread. What to do? What to think?

Re: Surgery? No surgery?

Jules, when in doubt at all always get yet another opinion. Hoping for the best! That 3rd opinion will be the tie breaker!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by marions Sat, 19 Oct 2013 19:27:02)

Re: Surgery? No surgery?

Jules.....So sorry to hear the latest news.  Cholangiocarcinoma Adrenal gland involvement is possible but we have few postings.  I would suggest additional, expert opinions.
The below postings may be of help to you:
http://www.cholangiocarcinoma.org/punbb … 2047036606

Your Mom has raised a fine daughter, a direct reflection of herself.
Hugs to both of you,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Surgery? No surgery?

Thank you both! A third opinion it will be!! Just when you think that you're getting a little more comfortable with the situation, the  rug is pulled from beneath you and you're all at sea again. We will soldier on! x

Re: Surgery? No surgery?

Hi,
If you can get a PET/CT scan, then it will tell you whether there is any tumor or cancer ACTIVITY in the adrenal gland area.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Surgery? No surgery?

Hi Jules,

Sorry I'm coming to the conversation late as I have been away.  I'm with the others - get another opinion.  There's to much to lose and everything to gain by getting one.

Clare

In the stars now . . . .

Re: Surgery? No surgery?

Sorry you are going through all of this.  I am on board with the getting of another opinion!

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Surgery? No surgery?

Jules,

Sorry to hear this latest news about your mum. I too agree with the others about seeking a third opinion on everything. Can I ask where you got the second opinion from? And yes, soldiering on sounds like the ideal plan to me!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Surgery? No surgery?

Hi Gavin,

Our Oncologist and also Professor Lodge's team in Leeds do not feel that the cancer has spread outside the liver. I believe that they have seen the tumour on the adrenal gland but believe it's benign, due to the grading of the cells or something (unfortunately I wasn't at the appointment when this was discussed, so I only have the info. second hand from my parents).

We then got a second opinion on mum's case from the Aintree team in Liverpool, who believe that the tumour on the adrenal gland is cancerous. It's a bit confusing as both Prof. Lodge and the Liverpool team have expertise in this cancer but currently disagree.

Our current plan is to continue with chemo and see what happens to the adrenal tumour. Our Oncologist feels that we will know if it's cancerous from the results of my mum's next scan (i.e, if it shrinks!).

Dealing with the uncertainty and differing opinions is a real challenge, so we're just taking one tiny step at a time, and keeping going with my mum's chemo. Her first post-chemo scan is in a few weeks and we wait with baited breath.

Jules