How did you find out you had cancer??

Hi your cancer journey was very interesting to me because My diagnosis was after I had a random on/off pain if I pushed in hard on my tummy.  I am 7 years On tamoxifen and this was listed as needs investigation, so my friend nagged me to go to doc, and i had a scan and it ended up 3C ovarian cancer , had 6 chemos then complete hysterectomy plus omentum , cervix and appendix cos the tumour managed to stick to it, then had 2 mop up chemo and in 2 weeks am going on lynparza ,  I work on my feet all day in John Lewis and it was last xmas, so everyone was tired , so it was easy to blame symptoms on other things, I think my friend saved my life by nagging me to get it checked out.  So I think now I will have all my checks and the slightest thing I will investigate further because this is the nature of ovarian, easily dismissed as something else . I am staying as positive as I can as well and getting on with life, as much as we all can at the moment!

i wish you all the best for xmas and the new Year, everyone is saying how horrid this year has been, but for Some Of Us  it really has been a nightmare year

stay safe

love and virtual  

xxx

I was experiencing various symptoms for two years and visited my GP & A&E multiple times before I was finally diagnosed with high grade serous 3c. I had a clear CT 6 months before diagnosis and CA125 was normal. After going to see the GP 4 times over 2 weeks in terrible pain I went to A& E. the first Dr I saw ordered an ultrasound for 3 days time. I was then seen by gynae Drs who said they were cancelling the ultrasound and referring me to their consultant. They discharged me with codeine.  I couldn’t lie down, eat or sleep properly so on the day I was due to go for the ultrasound I was desperate and rang to see if it had been cancelled. Luckily it hadn’t. I attended and they found  a 20cm tumour and was admitted immediately  for pain control and biopsy. That was in July 2017. I’ve had one recurrence and am now on niraparib for maintenance. 

Glad you're okay now kernow6 but yes definitely scary, Ok my story sorry it's a bit long....In Summer 2016 I had severe pains in my tummy/side and I was on holiday in France riding my motorbike with my husband.  So painful to ride I just had to keep stopping and laying on the side of the road, eventually we got to our pre-arranged B&B which thankfully not being fluent in French was an English couple running it and I told them I couldn't hardly walk by the time I got there let alone walk or sit up I just wanted to lie down, after a rest it sort of got better and I tried to eat but felt so sick, then that night I felt awful and spent most of the time on the floor in the bathroom thinking I was 'sick' cos it was sweltering heat!  Next day pains got bad the lovely owners of B&B took me to A&E where they confirmed I had appendicitis!  During that day they ambulanced me to main hospital in Perigueux where they did a scan and key hole surgery removal of my appendix and right side ovary which they said was inflamed and had a cyst on it 6cm.                                                                                                                                                                       I had 3 days in a scary french hospital but was very glad of their kindness and the insurance company as my bike had to be repatriated home, I had to fly home but only allowed to do that 7 days after the op so I had longer to stay in France, my husband rode back to the pre-arranged ferry having not enjoyed our holiday as we spent most of it in hospital, he was great but I still feed bad today... and then... I couldn't get the results back from France, not for want of trying... they said if I lived there I would have a follow up, but they said they would send me the details through, I kept waiting and waiting, I rang, spoke English to a English person, broken french to a french person, still no sign of my forms in the post, I found a fluent french speaking person in my friend circle who agreed to try, said succeeded but still it never came, when it got to Christmas with no signs, everyone including myself said oh well if it was bad they would have let you know the results of the biopsy of that cyst by now, everybody gets cysts especially when you get to mid 40's! so I kind of left it. 

In February of the following year 2017 I started getting pains again on my right hand side, not having an appendix anymore and not even an ovary now I knew that the Universe was telling me there was some unfinished business there despite my local GP telling me I was making it up because there is nothing there now but agreed to tests and an ultrasound scan.  The scan happened in March and something was found. They said to me they'll have to do another test and a different scan to see what it is which was another month (April) so I thought it couldn't be serious and the gynae team said I must chase up on my results why haven't I got them yet.  So back on the phone to the Hospital still no joy, so my french speaking friend got onto to her sister who lives in France to go down there and get them thankfully succeeded and she kindly translated them to me and all the appendix info was great but the biopsy showed it was possibly something to be concerned about and I should get it looked into immediately at my local hospital. you can imagine how shocked I was.  It took 3 weeks to try to get an appointment with my local GP even a phone call so I gave up and scanned all the french version and the translated one and sent it to the Dr receptionist to read though it perhaps in between patients as I felt it was serious and didn't want to wait 3 weeks.  I had a phone call from 'somebody' at the surgery saying they'd read it, saying, don't worry you haven't got cancer.  Can you believe how do they know when they haven't looked inside of me? Stupidly I believed those who have years of training over me that's not medical and 'just a carer in the community'..  Anyway by this time I had the original and showed my gynae team and compared notes with the scan but I am not sure what scan it was perhaps MRI as I'm sure it wasn't CT back then as I now know you have cannula for each one of those.. anyway I had an appointment made for me with a surgeon who told me that I ought to have a full hysterectomy just in case - I replied Ooh that's a bit drastic isn't it?   Still no word was mentioned to be about cancer whether I had it or not so as I wasn't informed I presumed I didn't but to be on the safe side they wanted a full TAH.  so July we're at now, why the long wait??????  That's another reason I thought it can't be cancer cos normally it's about 2 weeks to be dealt with I am told.....  So July 2018 I go in and have a full Hysterectomy... as I am recovering the surgeon lovely lady comes to me and tells me, that she's afraid my cancer has spread and scattered all around in my abdomen, through my perineal gland and onto my bowel and there is nothing they can do for me expect give me 'more time' by offering me chemotherapy!

This was the first time I was even told I had cancer I just couldn't believe it!  I don't know why it took so long or that I was left for so long before they did anything about it but here we are my energies now had to take that all in and try and get better for chemo and processing all this news... Oh I forgot a bit, after major open cut surgery you have to wait 6-8 weeks for healing so I couldn't start chemo for 7 weeks, but during that healing time... 3 tumours grew one at 15cm and sorry that's when they had flipped me over from being adjuvant to palliative. and the why I was told when my oncologist felt my lumps when I showed her, she said you're stage 3 but low grade and was surprised to feel 3 lumps in me when I told her so quickly... she crossed out adjuvant on the consent form and put palliative.  without telling me... to me as a carer, palliative was only about 3 weeks of living in my work experiences, not understanding that you could be palliative for a few years.. so I was so upset, she then explained its known as the silent killer and normally 3-5 years is what I'll get.  I'm so glad she's left now and only in this last month I've got a nicer bedside mannered person.  Anyway I had my carbo/taxol drugs and I was even lucky enough to have Avastin (Bevacizumab) but I was told it was likely I'd have to have chemo again in the future and that I couldn't recover from this it's all about biding time...

so all that was 2.5 years ago, and the good news was I did manage to get stable, I have been doing more healing like Reiki, eating the right things or so they say,taking raw ginger and raw turmeric and all the things 'they' say we should be doing, and I did managed to keep my CA125 markers the same for almost a year.  Unfortunately my markers have gone up again so I've had a scan and they've now told me it's spread to a tumour on my left hip, one of my left vaginal wall and cancer scattered up to my liver as well as everywhere in between - so I'm very upset that it's spread so quickly when I feel I've been doing so well.  I feel worse this time knowing I'm having to have chemo again but at the same time grateful that they're not giving up on me and even spending money on giving me these drugs, but knowing that I've been doing so much of the right thing yet still it's come back, and I've been working on myself mentally and spiritually dealing with childhood traumas which I think has caused this negativity to come out after being festered in me for so long and it comes out in dis-ease... a dis of ease do you see?  So I've just had my first week of sickness from the same drugs I had last time and felt so awful, feeling bit better now I am on the second week and able to sit up and now have to lay on the couch but I don't feel as strong as I was mentally this time as I thought I had dealt with everything and doing everything, I didn't think that if one day I would have chemo again it would be this soon, that's made me very sad.  I've still not told people I know, a couple of close friends but I can't deal with it as well this time as I don't know what else I can do really to help 'cure' me.  I am still trying to believe in miracles and I know I am lucky to be alive and there are always people much worse off than me, but I really would like lots more time in this life before moving on, I thank my body as a vessel for carrying my soul, I try to look after it, I try to love and nurture my inner being as I was never loved when I was young , what I would like to know realising this is probably too personal for people to respond to is how many of us, have had childhood traumas or issues in their lives that has come out in cancer somewhere in their body?   Is there a pattern or could it really all be in my head that I am linking the two?      If you're still reading this blurb then I apologise for a long story but I really would love it if there was some sort of poll we could do, then if there is we know we have to work on love and forgiveness and compassion for ourselves to help heal ourselves.  Cancer could be a cry of help and we need to love all our molecules so they can heal.  Thank you, Melanie

Hi Melnie, 

wow had to read your story twice to take it all in, I thought I had been to hell but you have been through so much more.  I am glad you are still being treated, I am now on. Olaparib for 2 years which is costing £5k per month! Mind you I have paid my tax and nat insurance for 42 years , so I am getting my money’s worth !  I lost my mum to breast cancer when I was 9 so I was interested to read your thoughts on healing after trauma as a child .  I can’t offer any advice, but I wish you all the very best with your latest treatment, take care and remember we are all here if you need a chat .

love and virtual hugs 

Hi, that's really interesting that you mentioned about trauma that could have caused the cancer. I was dealing with a police investigation following historical abuse when I was 12 years old. I'd been struggling with reliving the abuse towards me and then a year down the line I get diagnosed with cancer! Would be really interesting if someone did some research into this. If this is the case, I'm not going to let the cancer beat me, as that would mean my abuser took a period of my life twice! 

My story started with bloating and toilet trouble really.

Looking back I used to say to may staff on a regular basis, look at my tummy it's huge and rock hard, I'd blame something I'd eaten, this was going on for a long time, but in a day or 2 it would go down, I also had excessive burping and wind. I struggled to go to the toilet but that a big problem within my family so didn't think anything of it..until..the bloating never went down and toileting got worse, 

I rang the gp explained I was menopausal and all the trouble I was getting and he ordered a blood test and I was trying to blame ibs.

I was told by my gp to go and have a face to face and when he saw me his eyes nearly fell out at the sight of my stomach.  My ca 125 was 2580  So I was put on 2 week fast track and I can't fault any of my treatment, my body just had ideas of its own, bloods between chemo sessions were erratic, luckily I didn't have many side effects with chemo, I had carboplatin and pacliataxil so lost my hair had the big surgery and had lots of me removed, i now have a stoma that i was getting reversed soon, tried parps but my body couldn't tolerate them,  and last month was told the cancer is back the tumors/ lesions/ nodules are on the abdominal  wall and around stoma site, I also have 3 hernias, I am getting a call Thursday to let me know what treatment I will be getting other than chemo.

The waiting game is hard to bare I think.

Hope you all cope and stay positive, I was very positive last time, but I don't seem to have the fire in my belly this time x

Ahr Pamela I am so sorry to read your story, it is just awful that you went through all that treatment only to be faced with this, I totally get it,. But I don't believe your fighting spirit has left you, I think you are just a little deflated.  Can I ask after you had operation/ chemo were you told no sign of cancer? How long before cancer came back after treatment.   I'm sure when you know the plan of action your strength will kick in. 

Hi

I had my surgery sept21 and the consultant said ned, I had last 2 cycles of chemo and rang the bell in Dec , January 22 till june 22 we tried the parp naraparib  but for all them months it just messed my life around. So I was just monitored had bloods done Jan 23 and ca125 had risen had blood redone end of Feb and it had more than double, ct scan beginning of March confirmed it was back.

I was told last Aug it would be back, so I think you live every day waiting for it to return.

Have a lovely day and take care x

Your story is so similar to mine, I was diagnosed Nov, 2021, had chemo followed by debulking op in June 22, 2 more chemo's, I too was told ned, started Niraparib ndec 22, so far so good for side effects, however, bloods are showing a rise in ca125 last month it was 608, such a worry, I get bloods done again on Friday and God only knows what that will show... I am so very positive absolutely love my life and thank God every night for each day I have, but in the back of my mind I'm worried sick with thoughts of ; when, and what will happen next... I shake them feelings off and face another day thinking, what will be will be and putting all my trust in medication..

Take care!

Hi

I was diagnosed February 22. Same 6 chemos and surgery then on Olaparib. Been struggling with side effects and so had a break and looking to reduce dosage but my ca125 started increasing in December and so I’m having scan next Saturday. It’s a scary place to be, bad enough the first time but dread the whole thing again especially when the parps have made me feel so unwell!!