What Scans Do You Have? + Advice: I've seen many... - My Ovacome

My Ovacome

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What Scans Do You Have? + Advice

Biscuitqueen profile image
6 Replies

I've seen many posts about the various scans everyone is having and although I know that the cancer types are different etc. I'm noticing that some ladies have PET scans, CT with contrast etc. It seems to me that PET scans reveal smaller growths than CTs but also that they are more expensive - hence the stingyness with the scans!

I have a few questions (sorry!):

1. From your knowledge and experience, which is the "best" scan for viewing active cancer (my mum was diagnosed stage IV in late 2016, chemo-debulking-chemo) and is due a scan at the end of all of this soon. She has only had bog standard CT scans (no IVs).

2. What scans have you had + why your doctor thought this was most appropriate?

3. Can you ask to have a PET scan at another hospital/Trust and what is the process? (Our local hospital doesn't do PET scans and I'd rather ask you lovely ladies because whenever we have asked the CNS questions (We've literally only contacted her 3 times) we get the feeling like she's just fobbing us off and gives us the answer that's easiest for her to deal with - I understand they're really busy but still)

Thanks in advance for your advice - I'm not a warrior but you all on this forum have taught me so much and have been the most valued second opinion through all of this :) God Bless x

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Biscuitqueen
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6 Replies
Purple-iris profile image
Purple-iris

Hi

Well done for all the support you are giving your mum to make sure she is having the best treatment . Although thankfully you do not have OC you are definately a warrior and part of the team as family members have their own battles to fight. It is so hard watching a loved one coping with so much , I have had to support my mother with other serious health problems in the past .

Not sure I can answer your question but was diagnosed stage 4 in June 2016 . Needed chemo before debulking and treated at Guys and st Thomas's London

Have had numerous CT scans along the way always with an IV contrast ( no drink). Had a long MRI before surgery . Took about 45 mins . Think I remember the surgeon saying they like to have both. Have never had a PET scan . Finished my chemo in January now on Avastin every 3 weeks .

Had a post op 3 month CT scan which showed NED and now on 6 weekly blood tests to check CA125 . Currently 10 . Was told would probably have a CT scan every 6 months unless CA 125 started to rise or I had any symptoms .

Sorry don't know the pros and cons of the different tests. Am sure someone else may be able to help on the forum or you could ring the ovacome help line for info. Also think I read something from Macmillan.

Sorry you don't feel your CNS helpful with the info . Have you asked your mums oncologist ?

I have never really questioned it as have a good realatiinship with my team and so far although the treatment hasn't been easy things have gone as well as I could have hoped .

Sending you best wishes and positive vibes for your mums future treatment . Well done and Keep up the good work .

Love Kim x

greenpink profile image
greenpink in reply to Purple-iris

I am also under Guy's and St. Thomas' and diagnosed May 2012

antheamary profile image
antheamary

Hi i asked my oncologist about having a pet scan. He said it wouldn't work for ovarian cancer. I have a ct scan with an iv die every time.

LesleyGreengran profile image
LesleyGreengran

Hello Great that your mum has this level of support from you. I've only had CT scans. I've read posts from the US where women have had them. They seem to think they are better. Perhaps you could ask your oncologist if the CNS can't answer. I'd be interested to know the answer.

Petrolhead profile image
Petrolhead

Hi

The medics I have spoken to have different opinions. Some prefer ultrasounds some prefer CT. The PET scans appear to show "activity" and can be useful to show where there is disease movement. It also depends what type of OC you have. For my sort- mucinous a pet scan is not very useful as the mucin covers any activity that may be going on.

I certainly agree re CNS. I am sure she has a special soothing voice for answering questions. I would just prefer her to talk to me in a normal voice! Also agree re answers to questions fit with the hospital protocol. I asked about washings after my hysterectomy and she said they no longer do it as they found it was not of benefit. This was a load of rubbish as I know they do do it but as they were not expecting cancer in my case they were not geared up for it. So I take all information given with a pinch of salt as it is likely to be tainted. Sad it should be this way but that is how I have found it.

Regards Fay

greenpink profile image
greenpink

I've had a PET scan. This is a "dynamic" scan ie it watches the cancer cells actively"taking up" etc glucose. CT and MRI scans produce static pictures ( think that's all correct). Very surprised an Oncologist would say PET doesn't work on Ovarian cancer. At my first recurrence I had a CT, because of rising CA125 and this showed a suspicious area, so Oncologist then ordered PET for me to determine more finely if there was anything else to see which CT hadn't picked up --- and there wasn't. PET scans are more radioactive than CT and you are in a room quietly for an hour, with the radiation given through canula, prior to the scan. I also had a MRI scan, thorax to abdomen

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