To Scan or not to scan

Hi everyone..I went for a second opinion on whether to have scans and blood test/CA125 done every three months.My surgeon/oncologist does not want me to have the test done unless I have symtoms.She told me to go live my life.I trust her opinion.

I did find my first diagnoses with symtoms and I found my first reocurence with symtoms. The test just confirmed that I had cancer..The longer I go without chemo, the better it will work the next time..My symtoms are usually weight loss and bloating.I feel really good as of now.I'm one year clear. Is anyone else going without test.Thanks.LynnB

18 Replies

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  • Hi Lynn. I'm sure you will get varying opinions and ideas, but I think you have to do what you feel is right for you. It sounds as if you get clear signs and symptoms when things are active, but do you find regular blood tests and scans reassuring? If so, maybe that's right for you - but if you get stressed, perhaps get on with life until the next hurdle pops up. Wishing you all the best with whatever you decide to do. Take care Ali xx

  • Thanks for your input Ali💙💙

  • Hi Lynn my oncologist has apparently being doing this for the past twelve months or so with me. I havent had a scan during this time. I feel reasonably well. My symptoms can be pain and constipation. It just shows how we are all different, In the meantime my gp is worried about liver results raised and is repeating test, I understand this can also be down to bone loss and I have osteopenia. He was going to do an ultra sound then changed his mind and is doing bloods again before I see oncologist

  • Thanks.Good luck with your test.💙💙

  • Hi Lynn, we are all different in the way we deal with it. I want to have my ca 125 tested every time I have chemo. When I am having a break from chemo I do except to be seenn by the cancer clinic every 3 months & have my blood test & ca 125 test. I have Symtoms all the time so really can't tell if it's back.

    I had my last chemo in the end of October 2016 . I was in dreadful pain thought it was back but my ca 125 was only 9. The next ca 125 in January was only 10 but sadly I was in wicked stomach pain & bleeding down below but it was not back. When I saw cancer clinic in April my ca 125 was a very high 1000. I could feel it was down low near my privates & it has spread all over the place.

    I like the way I do it because I need to be in control of my life. I really can't tell if it's back or dorment. My onc wanted me to be seen every 6 months knowing I can't get into NED & I they wanted me to wait & watch. That's not my way of doing things. I am glad I didn't go over to 6 months the cancer has been found in all the old places but also around my bladders which is new & in my cervix.

    It's up to you how you want to deal with it. Good luck with what ever suits take care Cindyxx

  • Thanks Cindy for responding to my text.I worry about getting to many scans.If I feel worried at all I will request test to be done earlier.I will see my surgeon in three months.To see what your going good through I don't think I want to go past 6 months now.I'm a little worried about my ca125.It went from 20 to 40.I will keep a close eye on my symtoms.I'm also constipated all the time ,so can't use that as a relapse symtom.I also will never be NED.Good luck with your next line of treatment.Keep us posted.LynnB💙💙

  • Hi Lynn, there are too many worries & worrying questions. How many scans can we safely have? Is this constipation making our oc worse or is it the oc coming back? How often should we be seen by our onc? When a pain starts up out of the blue is it just normal every day pain or is it the cancer coming back? When your stomach looks a little bigger than normal is it the constipation, too much food or is it the oc? The biggest worry for most of us is when do we start to panic over our ca 125 going up.

    I really don't know what is normal any more. Yes keep a very close eye on your symptoms because if we don't no one else will sorry to say this but I don't trust doctors much. Take care please look after your self Cindyxx

  • The only evidence of recurrence for me was a rising CA125. As I'm not keen on the chemo route my oncologist will back me for surgery if it's a solitary tumour. If I didn't have regular monitoring I wouldn't be ahead of what's happening early enough for this option. I think we all have to take the route that gives us peace of mind

    LA

  • Thanks Lily Anne.I agree.My ca125 is up from 20 to 40.It's a good indicator for me also.Good luck with your next treatment.LynnB💙💙

  • I have my first 3 monthly check in 3 weeks time with my surgeon, then 3 months later with the oncologist, have been told no scans or blood tests just up to me to report symptoms. This will be the routine for the next 2 years so they say. In my case my CA was only 13 at diagnosis, I am stage 1c2, so the blood test they say wont be reliable. As for symptoms like you all say what is the norm anymore, I am having to try not to panic every time I get a twinge! I guess the best thing is just for us to go by our gut feelings if things don't feel right, get back to them to be checked out, always better to be safe than sorry. I am currently NED, long may it last. Good luck everyone on our very individual routes on this journey. x

  • Hi lynn, there will be a mixed bag of answers to your question, I am over two years clear now and on six monthly check ups where I just have bloods and a thorough examination which I find reassuring and it's only a couple of hours twice a year, not a big ask in my opinion for peace of mind. My oncologist doesn't like to do scans without a change in my health because of the risk of exposure to radiation, I'm happy to have the checks I have and know that if anything changes or if I'm concerned at all I only have to pick up the phone.

    If your oncologist is happy not to test and you're happy with this then you've possibly answered your own question, go live your life but be vigilant of your body and any changes 😊 ❤️Xx Jane

  • Thanks Jane.I agree about the scans.Too many can't be good.I'm going to rely on symtoms,but may ask for CA125 to be done periodically if I'm feeling concerned. LynnB💙💙

  • My oncologist is a no test man unless symptomatic! I followed his advice until I went to Slimming World and lost 2 stone! Then I scared myself and my doctor did a CA125. Oncologist not happy with this when I saw him. I tried to explain that it was done to seek reassurance and didn't cause me anxiety which is what seems to concern them. I just feel that because we are in remission, it doesn't mean we can't take some responsibility for monitoring our health. Love and positive thoughts to everyone! X

  • My ca125 has always been a good indicator for me, so when it's on the rise my oncologist orders a CT scan, I have kidney issues so he doesn't like to scan me too often, I don't seem to get symptoms so my ca level is what he watches. its good you trust your oncologist and she seems happy, I would do what she says but just be vigilant and if you are worried at any point go and see her.

    Best wishes xxx

  • Lynn I suppose were all different. My Oncologist at local hospital would have me back on chemo months ago. In January this year my ca125 was 4000. She couldn't understand why I was having no treatment or maintenance drug. As I know attend the Christie. They are very much watch and wait. I'll go along with what ever they say. They are amazing. My desease is progressing slowly. And ca is now 2000. So if all going well no symptoms .I'll see them in July. But if I feel I need a CT Scan then I'll get in touch. I have no bowel problems and have a great appetite , I'm hoping and praying it stays that way till July. Take care lots of love Xxxx

  • Hi Lynn, I was told by my oncologist that I would be reviewed every 3 months and have my CA125 checked beforehand, as it is a reliable indicator for me. However, I have twice had symptoms that concerned me, so contacted her and both times she took immediate action to reassure me. Both were false alarms as nothing to do with cancer but she did request an urgent CT scan to make sure there was no blood clot on my lungs causing the breathlessness which had suddenly developed.

    I think the most important thing is to have quick access to your oncologist via your CNS and to know they will take you seriously if you have any concerns.

    I too am one year post chemo and expect to hear good news at my review next Thursday.

    Take care of yourself.

    Barbara x

  • I had the opposite to some!

    Local hosipital wanted watch and wait ..the Marsden CtT scan...which resulted in earlier treatment....who knows? love Chris ps did look at the research on which all this is based ..led to me feeling that it's best to trust your instinct and not to expect too much of doctors. Good luck!

  • I am 14 months post chemo for 3b PPC and Fallopian cancer. The only scan I had was a CT before my first chemo in September, 2015. My onc believes in acting on symptoms before scans. Also keeping an eye on CA125 tests, taken every other 3 month visit) but my cancer was discovered before I had any symptoms and my CA125 was only 45 to start with. So... I do feel in clueless limbo sometimes.

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