Hi lovely ladies, I am just wondering how those of you that have had a recurrence, how did you know?
My appointment for oncology has been changed to October and by then I won't have had an internal exam for over a year. I will have had a CA125. They said as long as I feel okay but if I don't to get in contact. Well the point is I didn't know I had OC in the first place so I'm not sure how I would know if I had a recurrence.
Look forward to hearing your replies.
Zena xx
Hi Zena
My onco wanted a watch and wait. I said I did not have any symptoms so I did not know what to watch and wait for. Her reply was that that I might have symptoms if I had a recurrence. All a bit iffy for me.
I have ended up with 3 monthly bloods and 6 monthly scan. Although lots of ladies get anxious with scans I would get anxious without reassurance of the monitoring.
Fay
Thanks Fay, I get a bit anxious when I'm not checked as well. x
Hi Zena.
I didn’t know when I had first recurrence as I felt really well. It was the CA125 test along with a PET scan that confirmed it.
I’m now having stomach and back pain so am thinking recurrence again but it might not be. I think it is though.
Hugs xxxxx
Fingers crossed, Suzanne.
Every time I get a twinge I think it's cancer these days. It's turned me into a hypercondriac (don't know how to spell that. It'll come to me when it's too late).
I get a lot of pain in my back. When I say a lot I mean frequent rather than absolutely agonizing. My eyes keep going out of focus as well and I don't know whether to go to the optician, doctor or see how it goes.
There's always something lately. xxxx
We could have new illnesses and complaints but we will always think they’re cancer.
We can’t really think any differently. This is what this disease takes from us too. It suffocates our thinking.
Chemo can leave us with all sorts of problems too.
If you’re worried about anything atall, phone your CNS. They’re pretty good and know how worried we get xxxxx
Thanks again Suzanne. One day I feel worried the next I forget about it. I've been thinking more since on this site. My friend said I should leave it but I said I've learned lots that I would never have found out about if I hadn't joined.
The other thing, of course, for me anyway, is this is the only place you can really talk to people who know how you really feel.
There are so many more that are in a worse position than me. I wish I could help them. xxxx
I feel exactly the same Zenaj. Some of my friends say don’t spend so much time on the site but I’ve learnt SO much & all of us understand one another in a way no one else really can xoxo
You're so right. x
Aww Zena. I know how you feel. We all belong to the same club so we can all empathise , support and help each other however we can. It’s sad when there’s sad news on here but there are positives too and a wealth of information.
I try and keep myself busy. I work and then I do something after work, meet with friends, go shopping. Takes my mind off things for a little while.
Always here if you need to talk. Xxxxx
Thanks Suzanne, I think I'm just going through one of those days. Little things set me off again. I'll be back to normal by the end of the week. I could be just getting a bit anxious for my BRCA appointment next week. I want to get that sorted out and a plan of action. I'm fine really and have nothing to worry about compared to some lovely ladies. When I read what they're going through I feel so lucky.
You take care, Zena xxx
My recurrence was detected by a high CA-125 of 1290 which meant I was sent for an urgent CT scan. An internal exam the day of the CA-125 test gave me the all clear but since I recurred in some lymph nodes I don't think an internal exam would detect that. I had no symptoms and felt well.
Thanks for replying. It's all a bit of a worry isn't it? x
Hi Zenaj, I am watching for the replies too....as my Onc said the same!
And we all know it’s advanced before causing ‘sit up & take notice’ symptoms....or like yourself, no symptoms at all. They just looked uncomfortable when I said that....and said I would be more ‘perceptive’ if it recurred!?! Hmm.....from other posts, it seems like ladies do get a sense that something isn’t right. Lx
Trouble is I think everything is cancer these days.
When I asked what would happen when the five year clear arrived I was told ' we say goodbye and good luck'. That didn't fill me with cheer like it should have done. I'm going to ask my GP to do a CA125 when he does my thyroid bloods. At least if he'll do it, I'll worry less. xx
P.S. I think Petrolhead’s reply /idea is really good except I’d maybe worry about the regular doses of radiation from the CTs??
This is something I’m going to raise at my oncology appt - I had no classic symptoms until the week I was diagnosed and by then I had huge tumour- as I’ve endometriosis, two hernias and adhesions as well as a stoma , I’m not sure I’d pick up any early indications of recurrence amongst that background noise
I can empathise completely . I do believe I had post traumatic strees 1 year after treatment finished. I am hypervigillant about my body. This is not helped by the fact I developed osteoporosis in my lower spine as a result of the chemo and steriods and the prolia i am taking has side effects of joint / back ache.... so every back twinge is a cause for concern. However i have started keeping a diary of symptons and this has helped me psychologically . Generally its said any new symptons that last 3 weeks should be investigated.My back issues come and go and when I am vigillant about my exercises it goes! My coping method has alway been denial and I figure when / if it returns I will deal with it then. My motto is control the controllables.
I'm the one usually telling friends that worrying about something that might happen doesn't help anything and if it never happens you wasted a lot of time worrying about it for nothing. I'm not following my own advise at the moment.
I wonder sometimes as well if we're told the full picture. I say this because I didn't know about the BRCA gene or the scar tissue damage. I don't know whether the medics assume we know about these things, assume someone else has told us or believe it's best not to fill our imaginations with something else to worry about. As I didn't know about these things I worry about what else I don't know about and what surprises might be waiting for me.
Controlling what you can is a good motto to have.
Hi Zena. Mine recurred in the pelvic lymph nodes and was marked by an unusually sharp rise in CA125 (from my usual ~100, it went up to 138 then 160 in the space of a few weeks), and confirmed by a PET/CT scan. No symptoms.
So if the CA125 is a good marker for your cancer activity, you don't have to worry about not being actually seen or scanned for a while. Instead, you could just rock up at your hospital and have the CA125 taken once or twice inbetween, and have them contact you with the result. That way, you know right away if something's up and can then push for an earlier appointment with a consultant if needed, and/or a scan.
All the best. Maus
Thanks Maus, I'm never one to make a fuss but will definitely ask my GP. My CA125 is usually 7 or 8. I didn't know how good this was until I saw some of the other lovely ladies figures..
Best wishes, Zena x
Hello Maus. How often do you have your CA125 done? Are they (Onc Dept) happy to write your blood forms out? I am on Avastin (nearing the end) & I asked my CNS if I could have regular CA125 tests when I finish. She said they prefer to go on symptoms (!) & quoted some big study saying that it was found that testing CA125 more frequently didn’t pick up recurrences any more quickly....but how can it not? Linda x
Hi Linda. I do the same thing as Petrolhead here in Germany i. e. get my ca125 checked every 3 months, and scan twice a year if no red flags.
As for your Cns' advice not to check your ca125: That's not wrong per se, especially if - for you - the ca125 is not a good indicator of disease progression.
But it works for me, and measuring it actually reduces my anxiety, so I overruled that one and said 'I know, but I' d like it monitored quarterly anyway, please'. And they agreed.
In the UK, I got a new blood form after every appointment with my oncologist/consultant i. e. I could 'cash it in' at a time of my choice. If I needed one at a time where my consultant was unavailable, I would call the consultant's secretary and ask for the form being prepared (signed off by another consultant) , which I then picked up. There was also a gyn onc surgeon I could discuss results with, if Prof. M. G. wasn't available at the time, or my CNS. So it was all done with agreement of the specialists.
In Germany, there's no need for blood forms, so I arrange for the blood checks (as well as actual consultations with my oncologist) with the gyn secretary. Usually, my oncologist then calls me with the results. If he's not available, another gyn onc calls.
A small rise still does not necessarily translate into immediate treatment action. We watched it slowly rise for one and a half years, in my case, and only took action after a scan following a noticeable sharp increase showed some actually measurable new disease.
This is why I believe we need to develop nerves of steel with our cancer lark.... and start treatment only after careful deliberation with the experts, at the time that is right for our individual case.
If you would like your ca125 measured regularly, can you see if you can gently 'push' past your CNS?
All the best. Maus
I've had a couple of wobbles in between oncology 3 monthly checks thinking OMG it's back already. I've been to my GP and he's happy to do full bloods and ca125 test. Ca 125 seems a good marker for me.
That's good. At least he's doing something. I hate all this waiting and wondering. It feels worse than the actual cancer sometimes. x
I know how you feel. I wake up anxious every morning
Thank you Maus. I need to develop those nerves of steel 🙂 I may ask my GP about the CA125, if the Onc Dept are reluctant. Lxx
HI Zena, I find my 125 a very good indicator, when I had my first 3 month check it was ok then went back for my next 3 month check and my 125 had gone up 175 , Amanda my oncologist had me back on chemo, that was just over 3 years ago and my history is as soon as I go off chemo it goes up again .
Always only manage small breaks, in one break it went 1300 in about 12 weeks ,
I have no pain other then a back acne but I've had back acne most of my working life.
Have notice my eyes are getting bad and my hearing I put this down to all the chemo, my husband says this happens when your getting old.
My 125 has gone up arfter I stop chemo to go on a trial for 7 weeks now is 340, I had a scan and it has shown a spot on my adrenal gland, googled I say never google, it turns out this is a rear cancer and I'm not sure how that is treated, my oncologist did not discuss it with me at my last visit, I'm now just started my 6th treatment Carbo/Caelyx.
So in my case my 125 never stays down but this is not the best indicator for everyone also a internal exam might not show a recurrence, as you said have a 125 test when you go to your GP, if only to put your mind at rest.
Talk to your Gp maybe he can orange for you to have a scan if it will help, Ive had a bad neck pain, thinking now it's in my neck went to my GP and had x ray turns out it's arthritis
October seems a long time if you are anxious so I hope you can get some peace of mined
Take care Lorraine xx
Hi Lorraine, where I used to put everything down to old age, I now put everything down to cancer.
If your oncologist had explained to you properly what he saw you wouldn't have had to google. I know I keep going on about it but mine didn't mention what CA125 should be so I thought 7 was high because I expected it should be zero. Sounds stupid now. When I ask questions I think I've had an answer but find out later there was a lot more I should have been told. You don't know what you don't know until you know it. If that makes sense.
All the best with your new development. Hope it all goes well.
Take care, Zena xx
Hi, I know what you mean. When I told my oncologist that I wanted regular CA125 tests, as I had no previous symptoms when my stage 3b cancer was originally discovered, he said, rather ominously, "You will know!"
Jenny
That doesn't sound very helpful at all, you didn't want to hear that. I don't think they know what to say sometimes. They should listen to what you say and be guided by that. If you asked for CA125 he should let you have it if only for peace of mind. I'd like to know how 'you will know' when you didn't last time.
Even my GP 'didn't know' when I told him I had a big tummy.
Take care, Zena x
Hello Zenaj Im probably going to sound a little flippant to you but dont mean to be .. I like many of us had a tough ride last year on our roller coaster with diagnosis big op carbo taxol etc .. went ned in aug .. but at christmas started to feel bloated and tired quickly.. like some.. I had the approach "lets get on with this shxx".mentally thats kept me going 😉. Im back on carbo caelyx 3 weekly again but for some strange reason real comfort in that as I know there on it!!!.I have however turned my life around too.I make jewellery for target ovarian cancer research we make sure we do something different weekly .. eat out.. just been camping .. got hot air balloon ride soon .. see my family more.. and value the three weeks inbetween chemos.. We all have OC .. dont let Oc get you .. yeah ok .. we know it will make guest appearances and our security blanket (chemo ) kicks it off. Try not to let it consume you because its just wasting time you could have doing nice valuable things . If you feel unwell make an appointment but try not to over think it .I felt tired for a week before doing something because i knew.. you will know if and when . I wish you all a long remission but inbetween.. Live 😁😁xx ps hope that all made sense 😃😃😃
Thanks Suzi, all made sense. I know I'm one of the lucky ones and I certainly do live my life. Not so much today as it's raining but I've taken up guitar lessens, play badminton, run a bobbin lace making group, go to theatre, walk a lot, look after my grandson. I don't know how I fit it all in sometimes. I love baking bread and cakes. I'll try anything. I've always been like that and think it's what keeps me going. It's keeping you going also, so keep up the good work.
Enjoy the balloon ride. I loved it when I finally got up there. It took 18 months for the perfect weather conditions to fit with my free days.
All the best, Zena xx
I was so exhausted that I had to keep sitting down. I was convinced it was back and my scan showed that it was. My ca 125 is not used.
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