Ongoing Review

Hello All! 

Just wondering if you guys have an opinion on this. I was diagnosed with Stage one when ovary with 16cm cyst was removed followed by removal of everything else. They tested everything after second surgery including abdominal washes and it was all clear. As cancer was high grade I also had Chemo.  I was back with the surgical oncologist last week and he proposed that there was no real point in routine scanning and as my CA125 was normal on diagnosis that wasn't going to be of any use either. There will be apts every 3 months between him and the medical oncologist and I have to be vigilant about symptoms and get in contact with them if there is anything untoward. 

I see his argument re scans and the CA 125 but I am afraid of turning into a paranoid mess with every little twinge resulting in me freaking out. What do you guys think? Anyone else with stage 1 whose review doesn't include scans?? 

Dx

13 Replies

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  • Thanks Claire! This is very helpful as it means that my advice was the same as yours so I am happy that's it's some sort of standard! My CA125 is 6 now it was 26 when I started so I am happy about that even if both were within normal. 

    I am an optimistic person so hopefully I will be able just to get on with it and be practical about twinges and aches!!! 

    Back to work full time next week hopefully so onwards and upwards! 

    Thanks again! 

    Dx

  • I've got very definite views on this. Stage 1 is usually within normal range of 0 -30 if OC had been suspected and I had just had a CA125 test I wouldn't be here now. My new GP sent me for a scan and the rest you probably know. However prior to my recurrence, when there was likely activity my CA level was only 15. My surgeon said with stage 1 usually a scan would be done when you are in the top end of normal as a precaution. Plus  a yearly scan to check for any activity. My level rose to 47 which was why I had a scan after three years NED. I believe a once a year CT scan with CA is still a good precaution once treatment is complete. I think you are right to be cautious. 

    I don't think you are paranoid at all, my surgeon kept telling me it was great news, get to five years and I'm considered cured etc, as he is Mr Positive. He was very shocked it came back but with high grade it's more likely. I'm not sure what your grade was so that may be relevant

    LA xx

  • Thanks Lily Anne,

    Yes mine was high grade too and that's really why I am asking these questions! I am having my end of Chemo review with medical onc on the 3rd May so will discuss with him. Surgical onc explained it all and I agreed with him but I think maybe I would be happier to have an annual scan just for peace of mind!!! 

    Thanks again and I hope you are feeling good! 

    Dx

  • Hi D

    Great news that you are at the end of this. I read your post about your trip to the hospital with an infection. I too had a quick visit to hospital with a flu virus 8 weeks ago, being neutropenic at the end of cycle 6, with 4 days on antibiotics and a blood transfusion to mark the end of my treatment. In a negative pressure room and medical team all masked up, until hey had confirmation of swab results. 

     Regarding ongoing check ups. I am also just working on symptoms and 3 monthly checks, without scans or CA125. I was stage 3, high grade.

    First check up is at the end of May. Time is really whizzing by. Get the odd twinge now and again, but not too concerned. I am sure I will know when things start to go pear shaped. I imagine tiredness and bowel issues will figure in the picture somewhere, if the symptoms first time round were anything to go by.

    I am quite happy not to get caught up in too much testing and waiting for results, when it is not necessary.

    Enjoy getting better and having some fun over the summer.

    Love Loraine ☺

  • Thanks Lorraine! 

    Sounds like most of us are in the same situation and all.i really want is to get back to relative normality even though I know it's a different normality! I am not a paranoid person normally so will try hard not to get caught up in every twinge and ache! 

    Hope you are feeling well.

    Dx

  • Hi D, well that is a question you can bring up at the patient information day.  We were told last year by two local consultants that bloods were not done routinely or scans any more because they felt they stressed us out more, ie the thought of the scans and the waiting on results.  They seem to go by clinical evaluation unless you get an unusual pain or symptom.  I agree post chemo it is hard to differentiate between a chemo pain and a cancer pain.   I never had Cancer pain but had plenty chemo pains and aches all over.  My scar area would contract and my legs and feet sore,  I woke up every morning with pins and needles in my hands but eventually all this subsided and my treatment had been carbo taxol,    I would imagine loss of appetite and severe constipation and back pain would be something to see your gp about.   For the chemo pains nice comfy shoes like Heavenly Feet or runners.  Also my favourite Epsom salts in your bath or soak your feet for 20 mins in a basin,  This does help the feet. 

  • Thanks Joan! 

    The onc said the same about the type of symptoms that I should be looking out for! I have always had an anxious gut so that's going to be difficult to figure out what symptoms are just the standard ones that I have always had. The one thing I am comforted by is that I have a great GP and I know he will help me differentiate one from the other! 

    Looking forward to my trip to Cork on the 23rd! 

    See you there! 

    Dx

  • I am stage 2 and attend the Royal Marsden, after surgery and chemo scan was clear and ca125 was 7,I was told they do not do routine scans but would test bloods and physical examination every 3 months,after 2 years it went to 6 monthly checks and I made the decision not to have ca125 checks because I found it was causeing me a lot of stress,I think it was the right choice for me I seem to be able to move forward now and get on with my life,it does get easy as time go's on.Good luck for the future.

  • Thanks keepon! 

    It's great to hear others are the same so thanks for the advice! 

    Dx

  • I would try to do what feels comfirtable for you. My GP when I am not on treatment does my CA125 test for me so you do have a middle option if you get worried at any stage of using your GP. Glad your home, I just got out tonight delighted to be back in my own bed - sending you warmest and the best of wishes xxx Trish

  • Right back at you Trish! It's great to be back in my own bed and feeling much better!! Cheers for the advice I am seeing GP on Friday so going to talk to him about it he's great so I know I will get good advice!! 

    HOpe you are feeling better too! 

    Dx

  • I am in a very similar situation.  I was 1c, high grade with tumor that was densely adhered and ruptured.    Dx and surgery in June 2013.  CA 125 going into surgery was 8.  6 cycles taxol/carbo following surgery.  CA 125 came down to 3.  CT scan right after surgery and then another after chemo.  After chemo, been followed every 3 months with exams and CA125s.  Have been NED so far.  Even though my CA125s have never been clinically elevated (highest was 12) I was told they are more interested in the "velocity of change" so that if it went from 3 to 6 on next check that would be a concern and cause for a repeat blood and then CT scan.   That, and self-report of symptoms which of course I'm totally paranoid about.  I have next check in May, they have let me go 5 months this time and I will graduate" to every 6 months if I stay NED on this check.   I am actually happy about not having constant CT scans bc I was losing sleep (it doesn't take much) over all the radiation I was getting with each of these.  I am however bracing myself for a recurrence - I was told the 5 year thing also but then other docs would not commit to that and  it seems like many on here have first recurrences after that time which just speaks to the horrible nature of this damn disease, excuse my French.   I would go with the surveillance protocol as outlined. 

  • Hi I was staged 1c October 2012 due to capsule rupture. Had scan at end of chemo and NED, I had 3monthly follow-ups with internal exam and bloods done (my consultant tests both ca125 & ca19-9 though the latter is I think due to my tumour type which was mucinous. I should also say that both were within normal range at diagnosis). No routine scans BUT at a couple of points I've had some concerns and these have been followed up immediately with either / both ultrasound or CT scans. Thankfully they have never revealed anything but it was incredibly reassuring to feel listened to and see how quickly they would act to rule things out. (Like many women, it seems that I've had pains due to surgical adhesions at times). The team also always stress that if there are concerns between appointments I can and should ring them.

    Last year I moved to six monthly checks which is an amazing feeling and I feel very fortunate to be in that position. The anxiety before follow-ups is always there but it does change as the pattern becomes more familiar....  Wishing you strength and hope xxx

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