Hello

[Coldethyl]

Hello my name is Debs - I’m 52 and was diagnosed in Sept 2016 with stage3a grade 1 endometrioid oc - usual radical debulking and carbotaxol - lots of scans as I had pulmonary embolisms and was left with lung area of possible concern - now waiting on ct scan as CA125 up slightly - I have two hernias and a pelvis full of adhesions and 40 yrs of endometriosis damage - onc has suggested it’s the endo back but I’m struggling to cope with the waiting for tests and results - my CNS uselsss and not seen since first oncology appt. in 2016 so I feel at sea with it all - been reading forum and amazed at all the support and resilience - any tips on getting through next month of waiting ? Thanks x

[Petrolhead]

Hi Debs

yes -everyone on here is great. Agree it is so difficult to wait for results on any of the tests. Just wondering - is the CA125 a good indicator for you? With your other issues your CA125 could easily be slightly raised as inflammation in particular will raise it.

I have agreed monitoring with my onco (via the RM) to have a scan every 6 months. She did not really like it but as I did not have symptoms in the first place a "watch and wait" did not float my boat so to speak.

I have got my onco to agree for copies of all test results (includes all scans and histology stuff) to be sent to me on request. I had to do this via the onco secretary rather than the CNS (who uses her special soothing voice- grating- when speaking to me but does not generally achieve any required action)

Usually the MDT or onco like to look at the scan results and interpret them before talking with you. If they meet once a week etc etc it does take time which we all find extremely hard.

So after rambling on- why not try your oncologists secretary to see if/when the MDT team is looking at your results and maybe ask her/him to contact you when it has been done. At least you should feel more involved and might- just might- make them be more proactive with yours.

Finally it is usually the trend with CA125 that is looked at rather than a single raised count. Most of the oncos appear to look for a raise three times in a row before investigating.

So good that your team is being proactive with the scan and BTs.

please keep us informed as to how you get on.

best wishes Fay

[Coldethyl in reply to Petrolhead]

Thanks for reply - part of problem is my oncologist only works Monday at my clinic so is always away with the bank holidays - scans seem to routinely take two weeks to report but factoring in her work pattern it’s always weeks between scan and results - plus this time they wanted to wait to redo bloods - they aren’t sure if it is good enough marker as whilst high before diagnosis hard to know what contribution the inflammed state of rest of my pelvis contributes - it certainly feels like my endo is back as the old familiar places are saying “ still here!” Mine was mostly on bladder and tucked between bits of bowel anyway and reading round subject , unless all removed even post meno it can grow as we still produce oestrogen despite having our bits consigned to an incinerator somewhere ! I just feel in no man’s land as it’s not the most common ovarian c and is usually found earlier but still slow growing - I was told mine had most likely been there years as a endometrioma undergoing malignant changes ! Wouldn’t it have been nice if anyone had ever suggested regular ca 125 tests or even been remotely interested in my endometriosis - I only had symptoms of tumour a few days before diagnosis though had felt unwell for months though mostly just rundown and stuff suggesting immune system under strain - I was feeling really well till clinic - Sod’s law!

Thanks again x

[Petrolhead in reply to Coldethyl]

Hi

Appointments only available on a Monday will certainly add to the delays. What a pain. May is not going to be helpful for you either. So many ladies here would have benefitted from regular CA125 tests. Cannot see it happening though. (my CA125 was 31 so still no help to me)

I would say hope it is the endo back but that is not pleasant for you either.

Fay

[Coldethyl in reply to Petrolhead]

Thank you - I’m used to unpleasant - coming back as man next time though knowing my luck I’d get prostrate cancer ! Sun shining so going to go on exercise bike then bath and out - after I’ve sorted stoma out ! Cancer the gift that gave me more than enough !!! Enjoy your weekend x

[Seasun36-uk]

Hi Debs. Welcome to the forum. Sorry to hear you are struggling. You’ve suffered a lot already with your endometriosis.. I’d recommend keeping busy, distraction etc, but sometimes you just have to talk & get it off your chest! How about the Ovacome Helpline? Also see if there is another CNS (or pester that one again!). That’s what they are there for. Have you got a Maggies Centre near you? It’s so good just to drop in there & have a cuppa.

Wishing you the best of results, Linda 🌺☀️🌷

[Coldethyl]

Thank you - sadly no Maggies as I’m in Cumbria - I do get counselling via local cancer charity but it’s not really helping much - I’ve long history of health anxiety so you can imagine a cancer diagnosis not great ! I really struggle with all the contact with medical profession as so many poor experiences including post surgery encounter with one of the on duty consultants - I try and keep busy but I feel haunted by the what ifs - my MIL died of cancer and I looked after her and know how hard it was for everyone so feel so guilty about possibly doing that to my loved ones - thank you for replying and wishing you all the best too x

[Seasun36-uk in reply to Coldethyl]

Hi again, just an idea....how about getting a second opinion or transferring your care to The Christie in Manchester? I know it’s a bit of a way from Cumbria but....you might get more support/options. Linda x

My mum lived in West Cumbria, so I know Cumbria can feel a bit remote....but it is so beautiful!

[Coldethyl]

I suspect at some point I will get advice from Christie’s though all the regs I’ve seen at Lancaster have come up from there and my onc has mentioned that gynae dept have appointed a lady specialist in endometriosis who comes highly recommended and I may end up seeing her as I couldn’t face Preston again - it can feel like we are forgotten up here - I’m originally from Newcastle and not used to the postcode lottery in rural areas - thank you for replying.

[ellseybellsey]

Hi Debs,

The waiting is the worse I seen surgeon for checkup back in February 15th since then I had ct scan, biopsy, pet scan then further biopsies.

I finally got told a week Friday I have a recurrence and surgery planed for 30tth April. All in all it has taken 8 weeks for one reason or another, the waiting and anxiety has been horrendous during this time.

Ellsey xx

[Coldethyl]

Sorry you have had such a long wait - I don’t think they fully get what all of the waiting does to the nerves! I am forever being told to be positive by my team but it’s hard when you keep getting bad news or everything takes ages - I find the uncertainty very difficult as sure we all do , as I have an anxiety disorder - 6 or 8 weeks probably seems nothing to them but it’s a long time to go through every worst case scenario and back again - before my last clinic I’d had a three week wait for my mammogram results so was already off anxiety scale - I’ve decided to just fill time as much as possible with nice things as the end result will be the same whether I worry or not x