Bowel and ovarian patient

[Heatherslade]

Recently found this site which is most helpful. I have been on cancer journey for 2 years.Had early bowel op and it appeared stage 1 and they were quite happy. Unfortunately cancer count kept rising and eventually had to have chemo tabs and infusion which made me quite ill initially. MRI, CT and PET scans found nothing. Oncologist was mystified as was being treated for a count not anything visible. Eventually sent to Christies for cytoreductive surgery to remove omentum as they suspected cells in peritoneum, but not showing. Had ovaries, fallopian tubes, uterus etc all out and a wash through with chemo. After the histology they found had ovarian cancer in fallopian tube and part of ovary stage 3 I think. Back to a different chemo at Nottingham which have just finished, handled that better that the capecatabine tabs and oxalyplatin for bowel. Been on Taxol and Carboplatin for ovarian, I assume that is main treatment. 3 months now to next check but having CT at Christies in 3 weeks or so as they are great there. Trust me to have two primary cancers but am positive and feel ok. Anybody had similar dual problem would like to know. Am sometimes bit unsure of these counts, what is normal I wonder.

[Mrs_Atko]

Hi Heather and welcome to the site, although i'm sorry to hear you've been on such a difficult journey! I'm sure you will find sharing your experiences with the fantastic people on here almost therapeutic...I can't offer you any advice as my own story involved only a large borderline ovarian tumour which was whipped out along with ovary, tube and appendix (and stage 1a)...but I wish you well on your continued journey and best of luck with your next check. Jemima xx

[lesleysage]

Hello Heather,

I echo Jemima in welcoming you, even though we all wish we didn't have to be welcomed!!

I'm giving this link because you certainly look under 50 years old by miles! The link is to the Macmillan website on Lynch's Syndrome; although I was 65 when diagnosed with clear cell OC, my father had died of primary bowel with secondaries in his liver and my cousin (daughter of my dad's eldest brother) has had both breasts removed.

macmillan.org.uk/informatio...

I had genetic counselling at Nottingham and although no currently known gene is thought to be responsible, my daughter, aged 40 & herself a hospital registrar, has been referred for early mammogram screening and the advice was also to make aware, if our son and daughter wish, to tell the girls they have in their family to take my letter along to their GP as they approach 30....they are 3 and twins of 6 at the moment!

This posting is sent with warm kindness and with no wish to stir up any distress, Heather ... I hope I've managed to word it gently. The idea of a gene involvement can cause anxiety for some, whilst seeming part of our understanding for others and hence potentially helpful.

Hope today is a good day,

Lesley

[Heatherslade in reply to lesleysage]

Hi and thanks for that. This site is so good for getting information that you would not be aware about. Thanks for the age compliment as am in my early 70s but fit and active so am much luckier than people who are diagnosed much younger.

[Jinny31]

Hello. Positivity goes long way. I had a dual diagnosis with 2 billateral primary cancers ovarian and womb. Genetic testings were negative even though my mum had breast cancer and I got cancer in my early 30s. Weird 🤔

[Katmal-UK]

Hi Heather. Firstly I want to say what a lovely pic! I have OC stage 3 but my mum had OC and Bowel as primary but not at the same time, several years apart in fact. I visit the Christie, it's a great hospital, I hope your scan goes well. Kathy xxx

[Suellen2015]

Hi Heather: I am in Canada and we receive a kit to test for blood in the stool...mine just came back abnormal...so they are suggesting a colonoscopy to check the cause....I was diagnosed with ovarian cancer state 3c in March 2015 had chemo (taxol and carboplatin) then the surgery and 3 more chemo...finished for 7 months and then started again with caelyx and carboplatin because of CA125 rising and back pain....4 of those treatments and it wasn't working as well as it should so I was started on weekly taxol..every Tuesday...for 3 weeks then 1 week off. The onc suggested I add Avastin...but I would have to pay out of my own pocket and its thousands of dollars an infusion. I don't have private insurance...my province Nova Scotia won't pay for it because it's so expensive.

But to make a long story short, re bowel cancer,,,I am wondering if it would be bowel cancer or ovarian cancer which has spread inside the colon...as I have ovarian nodes on the outside of the bowel...if it was colon cancer, I may be able to add avastin because the province will pay for it for colon cancer but not ovarian.....isn't that ironic. It may kill two birds with one stone but at this time I am just waiting for an appointment for a colonoscopy....and I wonder if it would be safe to have while on chemo?

Best wishes to you...and I hope everything goes well with you...

Sue

[Heatherslade in reply to Suellen2015]

Thanks for your reply and hope colonoscopy is carried out soon and goes well. I presume they have done a cancer count for the bowel as it is different to the ovarian reading. Can be a lottery here as to what treatment can be funded, so far I have been very happy with my treatment and cross my fingers that ct will be ok. Lots of luck

[Hidden]

I am sorry I cant help you in this, perhaps talk to your team and see if there is a connections. There is always a possibilty that the bowel is affected by OC. That I know because I was warned that mine could be affected during surgery. So far so good, I got away without a bag. It must be hard having to deal with all of this. You know you can always ring the Ovacome Nurse here on this site and she may be able to help you.

[Cropcrop]

Hi Heather, welcome to this wonderful forum. Really pleased you are getting there. I was treated at Christies too, they are wonderful aren't they?, I just go there every 6 months now for checkups. I only had ovarian (only? 🤔) so I had the carbo/taxol regime too. It works for most people really well. Good luck with your scan and fingers crossed for positive results, big hugs ❤xx Jane.