Did your oncologist allow a PET scan ?

My oncologist would not allow it. He said the results could confuse both of us, and he is keen to avoid that. I feel like that was not a very helpful response. I have pain all over my stomach which are like sharp pangs and two twinges. I want the PET scan done as im on a mission to gather as many facts as possible and get early diagnosis rather than to potentially be told i have a reoccurrence further down the line .

Have any of you lovely ladies had a PET scan ? Did you find it helpful or dis it cause confusion?

Thanks for your input xx

15 Replies

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  • Hello, I had a Pet scan and CT scan in October 2016 after my ca125 levels started to increase. My understanding is that the two scans combined give the most information. The PET showed a 20mm tumour and the ct scan showed two, confirming my recurrence after 12 months. I didn't have any symptoms other than an occasional twinge. What are your CA125 levels doing? If they are increasing then I would think some scans would be in order.

    Best wishes Dawn

  • Forgive me if I've got the wrong end of the stick here...

    I think you have a fairly recent diagnosis, are awaiting surgery and possibly chemo too.

    I assume you have had a CT scan to inform the diagnosis.

    I suspect your oncologist means that an additional scan would not add anything to what is already known and therefore is not worth doing, especially since they are costly.

    I have had a couple of PET-CT scans and I think they were done to narrow down where surgery was needed.

    I can understand you're anxious to get on with tackling the pain which sounds horrible, but it's the treatment that will do that, not additional scans.

    A very high proportion of women with this cancer suffer recurrence and, although early diagnosis certainly helps, it is also unpredictable who does and doesn't recur and at what sort of intervals.

    So I'd try and gee them up about a surgery date and put worrying about scans on the side burner.

    Good luck with it all. I was a December diagnosis too! xxxxx

  • I only have ct scans

    I'm in reoccurrence I asked about pet scan and was told that it's not the best diagnostic tool

    Very confused😕

  • Hi Lollie, I agree with Mac27 in that my understanding from your earlier posts is that you've been scanned and are awaiting either to start chemo before surgery or awaiting a surgery date. So your team already have a good picture from your completed scans.

    I will also admit that I've read very confusing detail as to which type of scan is better- I've had contrast dye CT and MRI s ( many!) however have never had a PET scan.

    If you have your CNS email then write all your questions down re your Oncologist response, timelines for next steps, etc and send them in! You should get a written response or if course you could just ring up and ask over the phone. That's what I did at the start before I realised I'd do better to get face to face answers. I then decided I was going to stay sitting in my chair at my meetings and keep asking questions such as What do you actually mean? Can you explain that please? I don't understand etc etc. Before I did that I sometimes found myself outside the meeting room with confusion and more questions and I realised I had to be confident with what I was being told and if that meant a moment of embarrassment for me to ask again then so be it.

    Take care

    Clare xx

  • Thanks very much Clare. I am taking a leaf from your book. Meeting oncologist later today to get some results, i will not be leaving that room until everything is clear.

  • How did it go today?

    X

  • Hello Clare,

    The oncologist surgeon recommended that i have left ovary, fallopian tube, omentum and all lumph nodes up to chest removed. Followed by chemotherapy.

    He will do tests and biopsies during that operation, of uterus and other organs. If they find more cells have spread, further surgery will then be required but we're taking a stage by stage approach as i want to try to keep my fertility if i can.

    I am so nervous about what is ahead. Surgery will happen in two weeks.

    I dont know what kind of side effects to expect from the surgery ... removal of one ovary, could lead to menopause (as my other ovary is weak) , removal of omentum... i heard this can cause incontinence amongst other long term problems.... removal lymph nodes up to chest sounds very painful and who knows what long term problems will occur from that.

    I could have sat in his office all evening. I was only in there for 30 mins but took a friend with me , and he was more patient this time as we both had a lot of questions. He didn't really want to go into side effects and chemotherapy... he didn't really give me a proper answer on when i'd be able to return to work either. He just asked me if i liked my job, and then said he is probably not the best person to answer the question. Who knows what that means... im assuming he thinks i should resign. (Not an option for me as im self employed).

    There is such little information online about side effects ... i want to be mentally prepared for the surgery and know what im getting into . I hope some women here will be able to shed some light.

    X

  • I too agree with what the other ladies have said. My husband was very keen for me to have a PET scan before both chemo & surgery & the Oncologist explained it can be confusing as it may show up 'false' areas and that it was better to have chemo/surgery first

    I've had my first round of chemo & surgery due Monday, with further chemo due after. If necessary once all my treatment is finished perhaps then we'all ask about the benefits of a PET scan then.

    Good luck with your treatment plan x

  • Hello! My GynOnc also says PET scans are not beneficial for our type of cancer. It's his opinion that CT scans offer better information and no false positives. From other people I have met, this seems to be the general consensus for OC.

    I had surgery in June, front line chemo and now on second line. I too have stomach twinges and snaps. They don't seem to be able to offer any reasons for them. Could be post surgery healing, could be chemo working, could be active cancer.......ugh!

    Clare's advice on writing your questions/concerns down and asking face to face is an excellent one! I would also take someone with you that can listen and write down the answers. That way you can concentrate on what is being said and not miss anything while your frantically trying to write notes. :)

    Best...

    Jodi

  • Hi I've only ever had CT scans with contrast dye, my onc says he prefers this type of scan for OC??

    It's all confusing xx

  • Pet scans show what are called hot spots...so more or less cancer activity. But the confusion lies in that the brain heart and stomach will show hot spots because they are all very active, all the time. So Dr's naturally know to look outside those spots but a ct scan could show a tumor in those areas brain etc...its much harder to distinguish.

    So if Dr's choose to do pet they will also do ct scan to compare to.

    Hope this helps

  • Hello Lollie, I am waiting for a pet scan, everyone's cancer is different even though we all have some sort of ovarian cancer. I am only having one because they have a feeling I have another cancer. Cancer is a physical torture bit sometimes I think that the mental torture is worse. Gentle hugs to you lolly.

    Best wishes

    Damelza

  • Dear Damelza, having read your other post I hope you don't have to wait too long for your scan as I'm sure that can't help you at the moment. Thinking of you xxx

    Clare 💐💐

  • Perhaps your oncologist does not want to subject you to unnecessary radiaton as I assume you have already had scans and some surgery. I view my oncologist as the boss and I do what I am told, it makes life a lot easier for me and I trust him implicity to do the right thing

  • My oncologist insisted on a PET CT as any cancer glows to show where it is. He said it is the most informative for OC so I would push for one if you think it'll help. They are very expensive so tend to be used when deciding on complicated surgery to confirm good chance of success

    LA

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