Stage 1 Check Ups and Reoccurences?

[tangran123]

I was diagnosed with stage 1b in October and had 18 weekly chemo sessions. I'm 12 weeks pfc and the anxiety of a reoccurence is really high. My doctor is having me come in every 3 months to check ca 125 and have a check up but no scans. I feel very anxious about this. Have any of you stage 1 survivors had regular scans? Also are there any stage 1 survivors that never had a reoccurence? Thank you!

[Twink333]

Hi , I was diagnosed stage 1A in July 2018. The tumour was 20cms but didn't burst. I therefore had no chemo. Since surgery I've had 3 monthly blood tests, ca125 hovers around 12. I have a 3 monthly physical examination but have had no scans since before surgery.

Will be 2 years Ned in July this year and feel really well.

I was a bit consumed with recurrence fears, they've begun to lessen. I know the stats are good etc...but waiting for the ca125 result always makes me anxious.

How are you feeling?

[Zssu]

Hi, I was 1c in January 2019. Had chemo and get regular CA125 tests as well as so far 2 CT scans. If you had a high CA125 prior to treatment then that is a good marker for you and you may not need a scan. Sometimes Ca125 marker is not conclusive but your oncologist will know this and suggest CT if you have physical symptomsI. I know how you feel, the symptoms are very woolly but I would contact your nhs nurse if you have any niggles. I think in time, and hope for you, that the worry of reoccurrence will get put to the back of your mind. Wishing you the best Zsu x

[triplets]

Hello tangran

Sorry you are here with the rest of us, it’s so scary isn’t it? I was diagnosed stage 1c2 in July 2016. Had a full hysterectomy and 6 cycles of chemo, carboplatin only. I had three monthly checkups for two years, during that time I had one ct scan as I developed lymphedema in my left leg. That was caused by the removal of lymph nodes and I live with it still. Because I got so anxious dealing with these appointments they decided to move me to 6 monthly check ups, so one is with my surgeon who always does an internal, the other with my oncologist who does a blood test. My CA125 at diagnosis was 12, so not a reliable marker for me, it’s currently stable at 8 for the last three years. I have shown no sign of reoccurrence and long may it continue. So it will be 4 years this July. You do eventually stop letting it consume your every thought.....keep busy, keep a positive attitude. I wish you well. xx

[Bearup]

Hi, I was diagnosed in 2016 high grade 1b. Had surgeries and chemo. Post chemo, I only ever had a CA125 blood test and a chat with my lovely oncologist. I’ve now moved on to 6 month checks. I still get a bit paranoid and worry before each apt but it does get easier. You’ve been through a huge trauma and it takes time to gain some confidence again. I hope you can relax a little and start to enjoy life. 🌈💗

[Yorkiepudd]

I was diagnosed 1c2 last year and had op followed by chemo and radiotherapy as I also had uterine cancer. I finished chemo in October and radio in December and apart from one quick clinic in November (no bloods or scans) , I haven’t been followed up yet by the oncologist.

It is difficult not to feel anxiety about it making a reappearance but, and please don’t think I’m being flippant here, we need to find ways to stop it consuming the life we have now otherwise it’s won anyway. Think of how much you’ve scrapped to stay alive already and be proud of yourself. Everybody on here understands though as sadly we’re in a club we’d have rather been refused entry to! Xx

[Kayp]

Hi I had initially 3pe’s and drug induced hepatitis before diagnosis of 3c ovarian , but then after histology reduced your 1c hysterectomy, bilateral salpingoophrectomy and cervix removed then 6 chemo carbo only (as had anaphylactic shock to taxol) had CA125 and 3 /6/12 monthly checks for 5 years and about 4 scans in that time Now DISCHARGED

[Cropcrop]

I was 1C3 clear cell, diagnosed 2014 with a 30cm carcinoma of the left ovary, hypercalcaemia and a pulmonary embolism, happily I’m still here to tell the tale. Full radical 9hr debunking surgery in July 2014 followed by 18 taxol and 6 carbo. I had CT scans both before and after chemo. My oncology professor confirmed that, unless we become symptomatic or CA125 levels start to rise noticeably, that scans are not advisable because of their radiation levels. If your team believe that scans are required at any point they will do them.

You have all the normal anxieties, uncertainties and worries that come with our diagnosis, it is still really very early days for you, hopefully you will come to terms with the whole thing in time and be able to embrace the new normal we now all have.

Take lots of care, stay safe and keep as well as you possibly can be ❤️Xx Jane

[Robyn75]

I was diagnosed in November 2016 with Stage 3C. I have a scan once a year and my CA125 checked every 3 months. My original CA125 was 1,550. My CA125 yesterday was 6. I've been NED for 3 years now. Praise the Lord!!!

[acostello]

I was stage 1C. I’m 3 years reoccurrence free and hope for a long life with no reoccurrence daily. I did 3 sessions of carboplatin and no taxol. Full hysterectomy. Unfortunately the fear never goes away you just go from obsessing about it to thinking about it here and there in time. Wishing you luck and hope your treatment goes well.

[Claire65]

I was stage 1c diagnosed in October 2016. Had surgery and then 6 cycles of carbo/taxol. My CA125 was only 26 on diagnosis and now hovers between 13 and 19. I am now on 6 monthly checks and always feel anxious during the week before.

As time goes on it is not all consuming as it was in the beginning. We can never be sure if we will have a recurrence no matter what stage we were at diagnosis.

I have now learned to enjoy life as much as I can, the worry is in the back of my mind, but always there.

Good luck with your treatment.

[Hidden]

Hi there I had high grade stage 1a ovarian cancer 24years ago and have never had a recurrence. I had a hysterectomy and 6 lots of Carboplatin chemotherapy. I worried a lot about it coming back but that gradually gets easier as time goes on. Wishing you all the best

[tangran123 in reply to Hidden]

Wow 24 years ago! God bless! Thank you for sharing!

[Caroles1]

Hi,

I was 1c with ascites, was drained over a 2 week period, then radical hysterectomy followed by carbo taxol, 3 weeks on, one week off with a scan a month after.

Then every 3 months gynaecologist exam and bloods, dropped to both exams every 6 months, now, every year ( although I am ok, I am not chancing my luck).

I am 5 years 8 months out. This isn’t a boast, it’s just to offer hope.

We all live with the worry of re occurrence, but, if you don’t get on with life everything you have gone through will be a waste of time, you can’t worry about what may not happen.

My advice is to get counselling, re assess your life, do what makes you happy and keep busy.

You will be fine, I wish you love and all the best,

Carole xx

[ovarian1c in reply to Caroles1]

Thanks Carol for your encouraging words

[BJ_UK]

I was diagnosed stage 1a in October 2011, did not need chemo, and have not had any recurrences since my surgery that month. In the past 8 and a half years I have had 1 CT scan and 2 ultrasound scans to check out possible symptoms of ovarian cancer plus 1 CT for diagnosis of colitis. Most of my follow up appointments have just consisted of the doctor asking if I had any symptoms and giving my belly a once over. Once I hit 5 years I was given the choice of attending the gynae oncology clinic for follow-ups or seeing my GP for them with the promise of a fast track appointment if needed. I chose the latter - my GP orders a CA125 test for me once a year, asks if I have any symptoms that worry me and that's it. My VA125 is consistently 8 or 9 for the past few years, down from 15 when first done following surgery. It was never very high - 64 at diagnosis.

I don't think any of us escape feelings of anxiety when a check up is due. I'm still nervous after all these years.

I hope that you do as well as I have!

Best wishes,

Barbara

[Hidden]

My mum was diagnosed with low grade 1C1 cancer in Feb this year. She didn’t need chemo because hers was low grade. She’s now approaching the 3 months check up and is starting to worry bless her. I’ve read her all these post to try and reassure her but I think she’s always wondering whether chemo would have Been benificial even though not recommended your all amazing women xxx

[Lizchips]

I'm not stage 1, I'm stage 3. I had 18 rounds of chemo in 14 weeks. I was checked with bloodwork every 3 months. Then after all chemo done a cat scan. Then blood and check up every 3 months for 5 yrs. Now I'm seen every 6 months. Cat scan every year. Unless I have an issue. You can ask your Dr for lorazepam 1 mg. It just takes the edge off being anxious. Hope this helps. I was diagnosed in 2014. Best wishes, Liz

[Melody6]

Hi there, I was diagnosed stage 1a almost 2.5 years ago. I have a CA-125 test done prior to every check up, but no scans. I asked about scans and they just said they won’t do them (for me) as a matter of course. If my CA-125 spiked or if I nagged them they probably would. I was worried about no scans also, however, I feel really well (touch wood) and don’t feel I have any reason to request a scan (again, touch wood). Hope this helps. Mel x