Question about reoccurrence

Hi Sarah16. That's a very valid question I'm sad to say. I myself was stage 1B, grade 3 and had 3 x Brachytherapy sessions as a belt and braces option to prevent recurrence.

I'd sailed through 3 quarterly check-up's without  incident then in August started feeling weird with unexplained pain in my chest and shortness of breath. Took it up with my team who were mostly on holiday and they suggested I contact my GP for speed sake. He referred me for chest and lung Xray, all fine, ECG, fine, bloods a bit unusual. Eventually another CT scan on 4th November, 3 days after an all clear from my quarterly gynae check-up.

Sadly the CT scan has revealed I have lesions on my liver and spleen, a mass in peritoneum, also one above the vaginal vault and another close to my bowel. I just knew something wasn't right but certainly wasn't expecting that at all. It has been devastating but reality has kicked in. From someone with no known cancer in my biological family it's hard to get around but I'm being honest, no point in draping things in cotton wool.

Just had the first of 6 cycles of chemo. Will have a break after session 3 then a CT scan to see if it's working. I so wish now I'd been offered Chemo once my cancer was graded 3 serous. I was just led by the experts, I'm not blaming anyone but hindsight is an amazing thing.

So the thing I will say ladies, if something doesn't feel right, act on it immediately. I wasn't brushed off but was told it's something like 99.999% unlikely to recurr as where it was is now gone! Just sadly some pesky little s***s decided to set up shop somewhere else.

I sincerely hope my reply doesn't upset you but, as you say, it's good to also have a realistic hat on!

Sending hugs, Barb xx

Hi Sarah,  I can only quote my personal experience.  I was diagnosed with Stage 1a, Grade 2 endometrioid womb cancer.  After my hysterectomy the histology showed LVSI and so I was advised to have 25 external RT followed by 2 sessions of brachytherapy.  My oncologist said that although this treatment would make a local recurrence (ie in the pelvic area) unlikely there was still the possibility of a recurrence elsewhere and she mentioned the lungs as a possible location. No numbers were quoted to indicate just how strong a likelihood.

My post treatment follow-ups included blood tests and I noticed they always paid attention to the liver and kidney function.  I asked about any symptoms I should be aware of and was told that apart from the obvious ones of bleeding or any lumps and bumps; I should  report any unexpected and persistent pains, breathlessness or coughs.  The good news is that after 5 clear years I was signed off last year. 

I would hazard a guess that as chemo is a more systemic treatment than RT which is localized, it could well further reduce the risk of any remote recurrence.  I hope your chemo treatments go well and you don't experience too much in the way of side effects.

Hi Sarah.

 The chance of it recurring is my worry too - and probably everyone else!  I have recovered well from my hysterectomy, done by keyhole - and I did ask my consultant how it can recur, now that all the problem bits had been removed.  He replied that that is the million dollar question and if we knew the answer to that we would win an award!  He did say the usual place could be the vagina, or what remains of it, but it can be elsewhere.  

I will start brachytherapy and chemo soon and must admit that I am dreading it - I have stage 1a, grade 3, so I suppose I must be pleased that they are doing everything to reduce the chances of recurrence.  Take care

Hi MrsBJH and thanks for sharing your experience - it has made me feel more positive about facing brachytherapy and chemo soon.  I am stage 1a, grade 3 and now 3 weeks post hysterectomy.  I am doing so well recovering from the operation and feel so upset and anxious that I now face feeling far worse with these next treatments - I had hoped to avoid them.  
I do hope that you are feeling ok after your first treatment and that the side effects are bearable. Xx

Thank you for the very helpful replies and especially for your reply Barb and it hasn't upset me at all.  Nobody likes to think about the possibility of recurrence but it is far better that we all know what the possible signs are so we know what to look out for and can act on it immediately xx 

Hi Sarah 16 I recurred 6 months after hysterectomy I was Stage 1A grade 1.  We are not offered adjuvant treatments although the recurrence percentage is 10 to 15%.  I recurred at the vagina vault and was given salvage brachytherapy.  According to research and Nice guidelines 50% survival rate for Stage 1A who have not received ajuvent treatment. It all sounds grim but I believe its not that clearcut  biologically we are all different this horrible disease plays its own tune. I had the worst 1st year after treatment and I'm just coming to terms with cancer.  I find it difficult to express my thoughts on this forum and I'm reluctant to offer anything because I just don't know. The ladies on here are wonderful and share wonderful experiences.  Generally I'm getting on with living but every time I have a test the cancer gremlins come back with force. Wishing you well on your journey Dawn xx

Hi, It's been four months since your post but hope you are around as I think I'm about to go through similar.  I was 1A/1 with total hysterectomy and no adjuncts.  The immediate aftermath of the op was pretty bad and first 3-6 months I was stressed out but was only to have further follow up as requested by me, so honestly I began to think that's that.  It's now almost exactly a year.  Two days ago I had tiny bleed but bad period pain which is ongoing.  These are the same symptoms I had at the start of it all.  I am pencilled in with the consultant on Thursday.  Of course my nurse specialist (who is wonderful) says it could be other things, but I am expecting recurrence.  WTAF? I really thought I would never have to come on here again.  Apart from reassurance, I am worried about the after effects of any possible adjuncts I might be advised to have next.  Thanks. Sharon 

Hi Shaz2966. I'd had a years worth of quarterly check-ups all saying things were good but I suspected otherwise. I felt constriction in my tummy if I breathed in deeply and had suffered some painful bowel movements. My GP arranged an X-ray for heart and lungs which revealed nothing. My echo was good but the CT scan showed I'd mets all over.

Just finished 6 x chemo cycles and feeling good. Hopefully my CT scan next month will show all good. It's frightening time but we're here for you.

Lets us know how it goes with the Consultant next Thursday

Hugs, Barb xx

Thanks Barb,  I shall ask to go straight to CT scan then. What side effects (if any) have you had from chemo? I couldn't care less about losing my hair but I had bladder problems post-hysterectomy (attached bladder/womb) which were pretty awful.  Not sure I can go to colostomy etc.  S x 

Hi Shaz2966  I was more calm when I was told I had recurred.  I had a biopsy that confirmed it was cancer and that it was still grade 1.  Waiting for the ct scan was most stressful. However I was told that low grade cancer tends to recur lower down the body hence the checks at the vagina vault. It is still curable for us ladies who was 1a grade 1 hence no adjuvant treatment. Also it could be scarring, infection. I am 3. 6 years in remission. My first line treatment was just Brachy has the tumor was only 5mm.  I hope that your cancer has not returned. I know what you are going through however if it is not the best news there are treatment for you xx Dawn