Is there anyone else who doesn't have regular monitoring? I am stage 3b and have two more Avastin treatments before finishing treatment. I am seeing my oncologist next Monday to be signed off. The thing is, he said that he will not be seeing me again unless i have symptoms. No scan no CA checks, nothing.
Everybody on here talks about the three monthly checks but i feel that i am at sea without a rudder. I have spoken to the Ovacome nurse and she said that each health authority decides their own procedure. I feel so upset and feel that i won't ever have that little reassurance from getting good news (hopefully) every three months.
Jenny
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Can totally understand how you feel . We are all different and cope in different ways but I would definitely take this further, you need to do whatever you can for your own peace of mind to live with this disease .
I am having my treatment in London . I have been having 6 weekly blood tests as half way through Avastin and should then go to 3 monthly and then 6 monthly after a couple of years. ( I think) waiting to hear if I have BRACA gene . Not sure if this makes a difference to monitoring.
Am stage 4 high grade serous . I had no symptoms ( apart from weeing a little more frequently) before my ascities so will be insisting on at least regular CA125 blood tests for years ( fingers crossed ) to come as this was a good indicator for me . Could it be arranged via your GP ? Not sure how expensive the CA125 test is to arrange privately if all else fails . Or if you can transfer your treatment to a neighbouring authority that does regular monitoring. Have you tried holding your nerve and insisting that you have regular monitoring .
Keep fighting this until you get what you need for your own peace of mind .
Hi Jenny, my gut feeling is check this out because you are near the same grade as me & even when I am in a reasonable good place they carry on with 3 mouth checks. If only to give you peace of mind we all need that reassurance. If they still refuse to see you at least every 3 mouths I would make a fuss. Well I don't have to because my daughter in law is my voice with out her I would be six foot under by now. In the oc game you got to not only finght the cancer but those that are careing for your needs. Take care keep us up dated to what they say. Take care Cindyxx
Hi Jenny, I agree with the other ladies if you feel you need that assurance on a regular check then you should have it, my oncologist in the 2 1/2 years has monitored me the whole time with 125 and scans, I think a 125 and a scan after your last treatment is not a lot to ask for.
Do tell him how you feel and that it would give reassurance. Can you take someone with you for backup? As Kim said go see your GP he may be able to help....hope all works out..Lorraine 💙💙
I would be most unhappy with that. I am Stage 1C 1 and will have 3 monthly bloods and 6 monthly scan. When my oncologist suggested watch and wait I said not good enough. Got s 2nd opinion and they agreed with me on monitoring regime.
As others have said you need reassurance certainly in the immediate future.
Hi, Yes I would definitely look into this a bit more as it just seems so unfair.
I have had uterine cancer that was also in one fallopian tube so grade 3 serous,which is classed the same as ovarian type. I had 3monthly checks for a year which involved internal examination,no blood tests or scans unless I felt something was wrong in which case I would be fast tracked (sounds like a parcel delivery). I am now on 6 monthly reviews & will be due to be seen mid September. I found this quite scary,but have got used to the wait in between gradually. You do sort of feel isolated in a way.
Hi Jenny, I was on 'Watch and wait after my treatment finished....no scans...went elsewhere and was scanned and it had definitely returned. Meant I began 2nd line treatment sooner.
Did complain to the hospital about the anxiety caused by lack of scanning and they have developed a new protocol about definition of symptoms and when to return. However they still say in their clinical judgement waiting is better research shows that people tend to die at the same time(!) or in fact slightly earlier if treatment begins earlier and that some cancers can be caused by scans. There is in fact some recent research on the former...I think the results were unexpected.
I have to confess I've heard of some people...mostly in the States who appear to have been over treated...the treatment getting more and more demanding. The second Dr. I saw did admit there were differences of opinion but she did say 'if you want a scan you should have a scan'. I wonder if your gynae. nurse is your best bet in the first instance. I should stress your anxiety and your desire to know what the situation is.
On a slightly different note a Dr friend told me of a patient who had been too bad for surgery and had been 'just stitched up again'. She had chemo./ and is still alive and well 10 years later!
I just wish there were easy answers and wish you the best of luck in your decision making.....love Chris xx
My oncologist told me that you have to be well for 10 years before being discharged, three monthly checks for two years then six monthly checks up to 5 years and once a year between 5 and 10 years. No scans unless having symptoms. I would question your oncologist decision, also you may be able to get your GP to do a ca125 test, good luck xx
I agree with all the other comments. It sounds odd that you would not be monitored so soon after finishing treatment.
You asked if anyone doesn't have regular monitoring. I don't have quite as regular monitoring as I could have. However, that is because it was by mutual agreement with my oncologist. I have low grade OC and am on watch and wait. For the first year I went every 3 months and felt like I'd got all the info I needed. So then I went onto rolling 3 month appointments whereby I booked it every 3 months but if I got to 2 weeks before and felt ok I could postpone it. This confused the reception staff, so I agreed with the oncologist to book a definite annual appointment which I always attend and then call if I need them before then.
On the occasions that I have felt that I needed to go in before my appointment I have always been booked in on the next available clinic with no need to explain anything further. I did that through the nurse specialist each time.
My understanding though is that I'm an oddity. Most people do have their three monthly checkups for at least one year after finishing treatment, then going down to 6 months. In theory I would have stuck on 3 months all the time as I still have tumours. Being low grade means that I have a very slow growing cancer. If I had a high grade cancer I think I would have stuck with the 3 month appointments rather than annual.
I also don't have the CA125 checks or scans. The scan would only be done if I was symptomatic. I'm not bothered about having the CA125 checks as I know that I still have tumours so I don't feel that the test would tell me anything. I had every symptom on the list and more before I was diagnosed so I feel fairly comfortable in being able to spot the symptoms. However, if I had been diagnosed without many symptoms or I knew that I was NED then I think I probably would be pushing for the CA125 checks as a monitor.
I hope that helps to hear from someone who doesn't have the usual regular monitoring and the particular reasons why. Like I say this was by mutual agreement with my oncologist because of my particular case. I have always had the option to have more regular monitoring and there are different circumstances whereby I would choose that.
Give them a blooming good talking to and make sure you have a follow up you are comfortable with.
I would assume that after your final Avastin you would expect a CA-125 and scan if only to check the treatment has worked. I do think you need to ask why he doesn't feel this necessary. Thereafter a three-monthly check is normal (sometimes alternating between the surgeon and the oncologist) but many oncologists prefer not to do automatic CA-125 or scans until symptoms develop.
Jenny, Me and my dear friend BOTH have 3C OC. I see my gyn/onc/surgeon (one person does all of this) every 4 months for bloods, including CA and physical exam. I'm currently NED, but for how long? I do not get a scan as my CA was so high at diagnosis and is good "marker" for me. (Overuse of scans is suspected of also causing cancer.) My friend, who has been fighting back 3C OC for about 9 years and has recurring disease, still sees her gyn/onc/surgeon (one person) every 4 months with scans only when symptoms occur. Please ask for help on this. No woman should have to be "rudderless" in this fight. If your CA was elevated at diagnosis, that should at least be checked to help you know where you are. Best to you. T (US)
After my first recurrence of gct, Iwas discharged from clinic with advice to get blood test arranged every year for 5 years by my gp. By the time I went to my gp for the first time, I was convinced the beast was back, and my blood test was slightly raised. My gp contacted the surgeon, who agreed to see me. It was another recurrence. Di
I am 19 months NED now, I have 4 months off before next check. However, my onco has told me I can have 6 months off next time. My check is a physical examination, discussion of symptoms if any, plus CA125.
Would your GP be able to do the CA125 every 4-6 months for you?
Hope this helps as support if you decide to request further follow up.
If not surely your GP would be willing to do a blood test. Having said that I knew from symptoms that I had recurred. My ca125 and scan just confirmed it. I can understand you feeling at sea though.
I would be very annoyed if my oncologist told me that. Even a 6 monthly review would be better than nothing at all. They seem to forget that when we are going through treatment we are in more or less constant contact with the professionals, when treatment is over and we are no longer running to hospital appointments, our brain has time to process what we have been going through and i found that to be a really tough time.
I'm stage 3b, I didn't have Avastin after first line as not available in Northern Ireland. Was told I would be seen in 4 months, that turned out to be 7 months due to a backlog of patients. When my CA125 was done it had started to rise so scanned and recurrence reported. I didn't start treatment straight away, it was another 18 months before I needed to start.
Have you looked at the Nice guidelines on reviewing cancer patients? It might be worthwhile to do so.
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