Newly diagnosed in Kent

Hi Waney, I have just been diagnosed too and am waiting to speak with my MDT team at a different hospital too. I am being referred to Queen Elizabeth hospital in Gateshead. My gynae consultant who removed a 10cm cyst (that burst in removal) and both ovaries on 17 Nov 2021 told me on30 Dec that the pathology had come back as cancer. He told me to expect further surgery (lymph node removal?) and chemo but that is all I know. I had further CA125 bloods done and think he said he was requesting a full CT scan.

Can I ask about your pain? I have been going to GP for over a year reporting being woken in night with pain in my back/shoulder blades that eased when I burped! So we pursued a gastro route and ended up finding the ovarian cyst in a scan of my gall bladder. Now the back pain is worse almost constant. I am going to try and get in to see my GP as I am shattered.

Hello Buntymoo

It certainly sounds as if you’ve been through the mill but it’s heartening to know the medical team are onto it for you.  

My pain has always been in my lower tummy/groin and below my navel.  The pain  is similar to heavy period pain interspersed with cramping and sharp stabbing pains at times. I understand how debilitating it is so can only commiserate.  

From my experience I’m beginning to understand that many ovarian cancer diagnosis are made as a result of presenting with a gastric problem.  Perhaps it’s quite common for the pain to present in an area other than the site of the cancer.  I hope we manage to get some further answers on here.  

How are you doing today? I saw my GP yesterday who gave me Oramorph pain relief for the back pain I am experiencing. I havent yet used it as I am nervous about sickness ( as I dont have a good history with opioids )However, she told me to start again on Lanzoprazole and with a hot water bottle, I spent a more comfortable night. I am still waiting to hear from the specialists at the hospital. My GP said I would be having a full CT scan so again just in the waiting game. My GP very much focused on me keeping a positive mental attitude, that was good to hear as yesterday I felt awful whereas today feels a lot brighter. Hope you are ok 

Hello Buntymoo - I’m so relieved to hear your GP has taken your pain seriously.  I know not everyone tolerates oramorph but I wonder whether you are able to start with a smaller dose and work up from there.  My own experience with it was good and it certainly relieved the diverticulitis pain which was what I received it for.  I was asked back to hosp yesterday for a further ct scan on my upper chest.  I believe this is to ascertain whether there is any signs of cancer in that area.  Whilst I was at the hosp I picked up two booklets written by MacMillan.  One is ‘Understanding cancer of the ovary, Fallopian tube and peritoneum’ the other one I collected is ‘Side effects of cancer treatment’.  Not exactly great bedtime reading but I’m a believer in forarmed is forewarned.  Also, and I’m not sure if this applies to you, I thought my partner or son may benefit from understanding what I will be going through.  

So pleased to know you have a GP who has a supportive attitude.  I hope you have good friends too?  Let’s hope your CT scan appt comes through quickly and that your treatment plan can get started.  I’m happy to keep in touch if you’d like to. 

Hi Waney, we have a similar mindset, I agree that information is a positive thing. I have done some reading but am sticking to Macmillan and NHS sites rather than the internet minefield!

I have started with tiny doses of Oramorph today which I have tolerated as my pain has been quite bad. I will titrate up as I feel i need it. 

Hope your scan went ok, still waiting here but hopefully will have some contact soon. Take care, yes I do have good friends and family to support me. I hope you do too. Xx

Hi Buntymoo

brill news that you’re tolerating the oromorph - trying to live ‘normally’ with pain is a real grind so I hope you continue to be able to tolerate it.  I’m thinking of taking a leaf out of your book as today was a grim pain day for me too.  It’s not continuous but ordinary chores become difficult.  Friends and family are a godsend so we are both lucky they are there for us. XX

Please dont be in pain, its draining, take the Oramorph. 

I am finding its keeping me pain free but its making me "trippy" and itchy? I have been pain-free all night but havent slept and my thoughts haven't been too invasive. Hey ho. Travelling to London this weekend to see our daughter so looking forward to that. Take care, Sue x

Hi Waney, I realise that you obviously posted your question over 3 weeks ago now, and I’m sorry that I didn’t see this earlier.  I just wanted to say that I have been receiving treatment at Maidstone Hospital for ovarian cancer and can not fault the treatment or the staff at all.  You may already have found this out for yourself but I just wanted to reassure you.  There is a totally separate oncology unit there, and I always felt that nothing was too much trouble.  I initially had paid privately for a CT scan when my cysts were discovered, and I was reassured at that time that there was no point in considering further private treatment for the hysterectomy or ongoing treatment because Maidstone was the best.  I do hope you receive the same excellent treatment!  Wishing you all the best,

Wen

Hello Woo55

thank you for taking the time and trouble to answer my initial questions.  I am so relieved your treatment and experience at Maidstone has been positive.  I’ve been to the unit now a few times for CTscan/nuclear kidney check and bloods so I’m getting used the the lay out.  I too have been treated very well and now I’ve also had my appt with my oncologist I’m ready to start treatment on Tuesday.  My oncology nurse has spoken to me and in all honesty I want to get on with this journey, remain positive and get through it.  I’ve wanted to be as informed as possible without being negatively affected by too many facts and figures. 
I hope your ongoing treatment has not had too many side effects for you and that you too are positive.  
if you happen to be there this coming Tuesday please let me know.  Wishing you well and thanks again.

Hello Buntymoo

1. I hope you had a lovely weekend with your daughter.  Maybe you’ve been able to get into a bit of a rhythm with the oramorph which allows you to sleep.  I know exactly what you mean about invasive thoughts.  It’s hard not to get overwhelmed by them.  I’m  Wondering if you’ve started your treatment yet?  My first chemo is on Tuesday and if I’m honest I just want to get on with it. I succumbed to the oramorph and it helps but doesn’t completely take the pain away.  Wishing you well. Keep in touch. X