Unhappy with my last oncologist appointment

Hi ladies I have just finished 24 weekly chemo (carbo taxol) and had debulking surgery in the summer. At my last oncologist visit I said "What now?" She said "I'll see you every three months" I asked her if at that time would I have a CA125 and a scan done. She said "No". So it seems that the only way I will know if I have a reoccurrence is if I get physical symptoms. This certainly isn't preventative! I'm very upset about this. When I first had symptoms of OC it had already spread to my omentum with large tumours on it. I don't want to 'have symptoms' and find out I have an extensive amount of tumours again when a scan or CA125 could show the cancer had returned. I live in Vancouver, Canada. Has anyone else had this experience? Kim xx

31 Replies

oldestnewest
  • I had the same follow-up , no scans no blood tests and seen every 4 months for 2 years then decreased to every 6 months thereafter until 5 years then discharged

    This seems to be the trend now .

    Take care x

  • Thanks for letting me know about your experience. Kim xo

  • I had the same and I sat in his room and had to be very assertive even though I was quaking inside

    See my post healthunlocked.com/ovacome/...

    It's not good enough is it? I also wrote a letter afterwards to the doc and CNS- the CNS met me and apologised - the Onc didn't mention it but did do both a scan and I do now have 125 testing.

    As I said on a different post yesterday I'm ready to say this if ever I'm told that again:

    "I live with this and you don't, if ever you or any of your family get ovarian cancer in the future you can withhold tests and results from them but not from me"

    I also ask myself very quickly how I would feel when I'm outside the door after my meeting if I don't ask or bring something up in the meeting - it can take a lot out of us for us to ask or press for something and I think that's unfair on us.

    Write a letter, ring up, whatever makes you feel better and say you want both a scan and regular testing so you can monitor the trend of your results. So sorry you now feel upset and I can totally empathise.

    Take care

    Clare xx

  • Very well said Clare xx

  • Thanks Clare. You are right. It seems we have to be assertive at times. I will check out your post. Thanks for sharing your experience with me. Kim xo

  • Hi, I live in Manchester, England. I have CA125 done at every appointment (now every 6 months) it's just a blood test so don't see why they can't do it. I don't have scans now, so long as my bloods are ok (not just the CA125 but the whole blood test) then they say the scan isn't necessary and too many scans are not good as each one has radiation potential which in itself isn't overly good for us? I really understand your concerns and maybe if you express them to your oncology team they would be more amenable to doing the bloods? Good luck with this and well done on finishing your treatment. ❤️Xx Jane 🎄

  • Thanks Jane. I will ask my oncologist about doing a CA125. That is how we first discovered my cancer so it is a good indicator for me. Kim xo

  • Kim I'm. not done treatment yet but I did ask what happens after and Dr said to see her every three months for a year. if you are worried ask gp to order ca125....I know here in Ontario it costs me 30 dollars to do this test. right now I am still in chemo so I get it included with my blood work at Sunnybrook Odette cancer centre at no extra cost to me. I'm. on Facebook as jeanette suoernuse

  • I live in London (England) and I've had 3-monthly check-ups (blood test, including CA125, but no scan) with assorted members of the oncology team since I was told I was NED in August 2014. I find them very reassuring. Is it a question of expense in Canada, perhaps? If the CA125 is a good marker for you it seems odd not to continue to do blood tests, but there do seem to be differences of approach, even within the same country. Hope you manage to persuade 'them' to continue with blood testing and the best of luck! Deb x

  • Thanks Deb. I am going to ask for a regular CA125 test. Kim xo

  • I got blood tests including CA125 after my first line treatment every 3 months but I wouldn't have wanted scans every 3 months. I did have one after 6 months though and it showed I was clear at that time. Then I had one when the CA125 started to increase after a couple of years.

  • Thanks for sharing your experience with me Lesley. I am going to ask for regular CA125 blood tests. Kim xo

  • I had 3 monthly check ups for 2 years. Now down to 6 monthly. I have had a CA125 done before every one of them. I am now nearly 7 years down the line and still having check ups. I think it depends on your diagnosis and most certainly on your oncologist. Mine is lovely and very thorough. I hope you find some peace soon. Big hugs Ann xx

  • Thanks Ann. I am going to ask for regular CA125 blood tests. How wonderful that it has been 7 years for you. I am going to ask for regular CA125 blood tests. Kim xo

  • Hi Kim

    Similar with my onco. Suggested wait and act if symptoms arose. As I did not have any symptoms in the first place I said that was not an option for me and I demanded a CEA test there and then.

    After a referral for a second opinion the second onco said she would recommend

    3 monthly bloods of CA125, CA19 (due to mucinous type) CEA and 6 monthly CT scan.

    There is a thread on monitoring

    healthunlocked.com/ovacome/...

    You may find this interesting to see what other people have- it seems to vary quite a lot. My type of Mucinous does attract the CA19 test and the CEA but CEA is used for other types as well. Please read the monitoring thread you may find it of help.

    I think I will probably pay for an MRI scan at regular intervals to put my mind at rest.

    Fay

  • Thanks Fay. It does seem that you have to be assertive. I will take a look at the thread you sent me. Thanks for sharing your experience. Kim xo

  • I would want a blood test at least because I didn't have any specific symptoms non that I recognised anyway so I would worry ... o don't think a blood test is too much to ask to set your mind at rest 🤗

  • Hi. I think it's a very individual thing.

    I'm on watch and wait in the UK. But, I did have lots of symptoms pre-diagnosis and it's already known that I'm not free of disease. So I don't even have a CA125 test. I was told that even if the tests showed that it was growing there would be no treatment recommended until I became symptomatic anyway.

    But, in my case my next course of treatment is surgery again with stoma being fitted. So to be honest I don't want to have that surgery until the cancer is causing me a problem again with symptoms.

    I was also told that too many CT scans aren't great. However, I was offered one when I got jumpy about some symptoms a few months ago. The doc did an internal exam and told me she couldn't feel any changes, but that I could have a CT just to be sure. As we know that the tumour is sat in a place where an internal exam could feasibly pick up a change I decided that the CT wasn't necessary. The symptoms did ease off after a couple of days and I decided it was just some changes due to healing.

    I also decided at that point that I wasn't convinced the CT scan would ease my mind. If it showed the tumours were growing how would I feel about that? I know they're there anyway, but currently I can pretend they're small and not causing me an issue. If I saw the results of a CT showing they were growing, eek. Similarly with the CA125 test. If the numbers were going up, but I felt generally ok, what then?

    But that's my situation and I have low grade. Like I said, I was symptomatic pre-diagnosis. If I had been diagnosed with high grade and I'd never had symptoms I may have a very different view.

    I think you need to speak to your oncologist or your specialist nurse and get an understanding of why this course of action is being recommended. They may have a completely logical explanation for it. But then if you're still not happy you can explain your own reasons too.

    Good luck

    X

  • Thanks for sharing your experience with me. I am going to talk to my oncologist and ask for regular CA125 blood tests. Kim xo

  • I am in Toronto Canada at Princess Margaret Hospital. A CA125 is done every 3 months after chemo for the first 2 years. I do not think that a scan is done that often.

  • I am going to ask for the same thing. the CA125 is a good indicator of changes for me. Thanks for sharing your experience. Kim xo

  • HI I had a choice between PMH and Sunnybrook. ...they are both U of T....I live in Vaughan. ..you? hope you feel well - jeanette

    Reply Like (0)

  • Hi.Im in Canada.I was told after my treatment finished and I was all clear that there wouldn't be any scans done unless I have symtoms again. I think I had blood test every three months, but no scan or ca125 done.I was to rely on symptoms.And yes I was bloating again.My oncologist said she didn't think it was back,but my husband for a clear mind, insisted on a scan and ca125 done.Yes it was back.Scan showed tiny particles and ca125 was going up.Thank God he insisted.I am now what they call stable.Because I reoccurred, they are doing scans, and blood work plus ca125 every 3 months.I find Ca125 a good marker, plus bloating an indicator whether my cancer is back.I have a scan due on Friday.My results a week later.I do not have any symtoms as of now,so I am hoping for good results.If your concerned insist on these test for your own mindset.At least do blood work and ca125.Take care. Lynn

  • Thanks for the advice Lynn. I am going to ask for regular CA125 tests. CA125 and bloating are also good markers for me. Fingers crossed that all goes well for you on Friday! Kim xo

    Thanks for sharing your experience with me Lou. I am going to ask for regular CA125 blood tests. I'm not sure how I would feel if a scan showed a tiny recurrence that couldn't be treated. I'll have to think about that. Kim xo

  • Sorry Lynn. I accidently typed my response to someone else on your reply to me.

  • I am on 'watch and wait' with a checkup every 3 months. They do a CA125 every appointment but no scan. I wouldn't want one because a CT scan involves a considerable exposure to radiation and my oncologist said they wouldn't treat me again until symptoms show and that includes something my doctor can feel or palpate. He examines my stomach and neck lymph nodes at my checkups.

    He's taken me from stage 3 with a 1.5 cm tumour on my periaortic lymph node to NED so I trust him and his team.

    I agree with Katfish-how will you feel if a scan shows a tiny recurrence, not big enough to treat?

    Take care,

    Lou

  • Thanks for sharing your experience with me Lou. I am going to ask for regular CA125 blood tests. I'm not sure how I would feel about a scan that showed a tiny recurrence that wasn't bit enough to treat. I'll have to think about that. Kim xo

  • Had check up two weeks ago, have another one in March, I asked if I needed scan for that apt and the answer was a definite NO, However I do know that if I have symptoms I will be seen asap and scanned. This seems the pattern world wide now doesnt it, I live in Ireland,

  • It does seem to be the pattern world wide. That makes me feel better knowing that, but I am going to ask if I can get regular CA125 tests. Thanks for sharing your experience with me. Kim xo P.S. I LOVE Ireland. I was there in 2015 and really enjoyed my time there . Kim xo

  • I have just had treatment 4 of 6

    I had two carbo/taxol but then taxol was stopped due to neuropathy

    I asked about follow up treatment last Monday

    My final treatment is end of January

    I will be having CT scan in February

    ca125 every 3 months for two years

    Then every 4 months for two years

    Then 6 monthly for the final year

    I am also going for a hearing test tomorrow as I mentioned about having mild tinnitus

    I was also told when I started treatment following surgery that it was adjuvant chemotherapy and that rogue cells would not show up on a scan. It only takes a handful of cells for a reoccurrence but many millions for it to show on a scan. I had a scan as a benchmark before treatment following the one prior to surgery and will be having another scan at the end of treatment

    I am being treated in Reading, UK

    Best wishes

    Xx

  • Wpw!!!! They are really looking after you very well!! I wish it was that way in Canada. Thanks for sharing your experience with me. Kim xo

You may also like...