New cancer pain

[4seasons]

I have ovarian cancer and am on the 2 week pathway. I’ve had ultrasounds and seen a Gynae consultant who says I will need surgery. I have an MRI and a CT scan this week. CT scan is for a guided needle biopsy of ascites. Over the last few days the pain in my left abdomen ( largest tumour ) has moved to my side at waist level. Shooting pains , feels very tender and hurts if I breathe in deeply. My question is … do I need to tell someone? Who ? Or do I wait until next Gynae appt ( no idea when this will be ) Pointless telling GP as I’ve been continuously misdiagnosed … IBS , UTI , diverticulitis etc. I’m not even convinced the practice is aware I have been diagnosed as none of my notes or appts appear on the GP app. Can anyone help ?

Can you contact your consultant/secretary? I found the consultant was the person who actually got things moving with my DM.

Thank you for responding. I’ll try phoning tomorrow. Otherwise would 111 help ?

I work in cancer care. Do you have contact details of your nurse specialist team? They can they escalate to your consultant and provide clinical advice

I haven’t been given any details of a nurse specialist team.

Unfortunately I horsefly don't think 111 would be able to help. They will likely advise you to book with a GP tomorrow to discuss pain relief until you are seen by consultant and started on proper treatment x

Contact macmillan for support.

I’ve just emailed Macmillan ( phone lines close at 8 pm ) . I hope they will get back to me tomorrow. I’ll also try to phone Gynae dept at the hospital to see if I can contact the consultant,I’m so worried that the cancer is growing into other organs etc. It is fast growing.. 6 months ago I was clear of cancer according to my ultra sounds and CA125 test.

If you have a named consultant, I would suggest asking the hospital switchboard to put you through to their secretary. They can pass on a message.

That must be a terrible worry for you. I really hope everything's okay. I hope you manage to get some sleep tonight and some help tomorrow.

Op, I’m sorry to hear that you have cancer. When were you diagnosed?

I was told on Thursday 23rd January by a Gynae consultant. Came as an utter shock . At the end of June 2024 I’d had blood tests and ultra sounds which did not show cancer. All convinced it was a bowel problem so had a colonoscopy which came back clear. Ovarian cancer is sneaky ( and fast ) it would appear.
I am managing to get 5/6 hours sleep using a sleep app before my bladder and abdominal pain and discomfort wakes me up. I am doing my best not to let gut wrenching panic take over my brain !!

I'm so sorry you are going through this and for being misdiagnosed which unfortunately does happen with ovarian cancer. Please getting onto your consultant, or Macmillan as soon as possible this morning, or ring 111

Or your GP

Call the hospital switchboard and ask to be put through to the gynaecology cancer nurse specialists or ask to speak with your consultants secretary who should have contact details for them or know who you need to speak with

@op, I’ve had ovarian cancer and yes, it’s a sneaky bugger. I only asked about when you were diagnosed as I thought the 2 week pathway that youve mentioned you’re on came before any diagnosis. But I think I’ve misunderstood you.

what have they seen, or told you, up to now?

I have a10 cm solid cyst on my left ovary , a smaller one on my right ovary and free fluid ( ascites ) in my pelvis. Consultant said they were malignant and “ needed to come out “. My abdomen is permanently sore and I have jabbing pains on my left side which seem to have increased in regularity and also moved up to my waist on the left side. Apparently I’ll have to have a CT guided biopsy and surgery. The sooner the better as far as I’m concerned. I only hope that there is something they can do and it isn’t too late. I am eaten up with anxiety.

I’m sorry Op, and I understand only too well how scared you are. It’s awful. Once you know exactly what’s going on with you there’s a board here where you can be in the company of other women who also have cancer. Granted most of them have breast cancer but a couple do have ovarian and a few more have other kinds.

I was diagnosed with Mucinous Ovarian Cancer that was caught very early in a 6kg ovarian cyst and I didn’t need chemotherapy. I did have a huge surgery where everything I could live without was removed and in November I’ll reach my 5 years and will hopefully be able to stop my yearly check ups.

just to say - you could even go over to the other board where the threads are now. The women there will help you with the waiting.

@4seasons I totally understand how anxious you feel; it is absolutely crippling.

I have a leiomysarcoma in my pelvis and have also recently had a CT and MRI. I don't see my consultant until 11/02 and I am beside myself!

Let's hope we get a treatment plan in place sooner rather than later.

I am so sorry to hear that some of you are having to walk this road too. Trying not to mentally spiral takes a lot of effort both mentally and physically.
I contacted the consultant’s secretary ( a lovely radiologist at the hospital gave me her direct number ) and she in turn got one of the Gynae nurses to ring me. She really calmed me down… I was panicking because I’d been told my CT scan tomorrow was for my thorax and I immediately jumped to secondary lung cancer !! Apparently they need whole body scans and I’d only had an abdominal scan in A&E
Anyway…. panic over and I now have “ contacts “. I was so afraid I would get lost in the system. They will come up with a treatment plan for me once they have all the scan results. It’s still terrifying but I think I can cope.
Love and virtual hugs to all who are ill too…. and to those who tried to help me with my worries. It means a lot x

@4seasons how are you today? X

@Enigma52
I’m feeling fairly calm today … although I am deliberately not thinking about the future . Had my thorax CT this morning.. no big deal. I find myself making slightly sick jokes with my husband…. just trying to maintain a bit of normality I suppose and I’m very aware of the pressure this all puts on him .
My abdomen is very bloated today and sore. I feel as though I’m carrying a ball of pain around ! I’m sure I look peculiar when I’m walking.
I am watching rugby on the tv with a cuppa and some chocolate. A small pleasure which means a lot.
My mind occasionally wanders to terror but mostly I am managing to hold it down.
How are you today ? I hope that you have managed some enjoyment/ joy . It’s so hard isn’t it ? Unless you’ve been through it yourself you just can’t understand the feelings. Hugs xx

@4seasons yes you are right, it is so important to find joy in the day, mainly to keep us going.

I've had a bit of pain ( where my tumour is pressing on a nerve I think) but after yesterday's " cocoon" day, I thought I should try and get moving!

My mind keeps wandering towards work and what an earth I am going to do, should I need any aggressive treatment. I only returned to work last July, after my hysterectomy and secondary breast cancer diagnosis. I was feeling so well and now this bad boy has struck me down again.. yeah I'm pretty bloody furious! So I could find myself on benefits of some description very soon, as I've already had my six months full pay and two months of half pay for the surgery and getting used to the BC meds.

I get the wandering to terror thing. That was me yesterday. I could not get out my bed.. sobbing and shaking..

I hope you have a nice evening tonight xx 😊

Sorry to read this op, what were your initial symptoms?

Wishing you all the very best 💐

@Enigma52
The work aspect sounds so worrying and the stress must certainly add to the awfulness of the situation. Is there anyone / organisation that you could talk to and get advice from … CAB ? If you had a better picture of what might happen or be available it would be a worry off your mind. You need all your strength and energy to cope with your condition. I’m retired so don’t have this extra worry so realise how “ lucky “ I am. I do hope you can get some advice.
@Sunshineandrainbow
Symptoms ? I’ll try to be succinct. In May abdominal spasms , once or twice a day. Also if I sat down or got up from a chair too quickly I had a heavy , painful feeling in my abdomen. End of June GP sent me for CA125 blood test and ultrasounds. All came back negative for ovarian cancer … just a 3cm fluid , non vascular cyst on left ovary. I was told this was very common and nothing to worry about. I started to get constipated and bloated and lower left abdominal pain. I had a colonoscopy in September thinking I’d got diverticulitis. No infection or inflammation was found. From beginning of December the pain and spasms became worse … backwards and forwards to GP … diagnosed as diverticulitis/ UTI/ IBS in turn !!! Ended up in A&E on 12 th January…. spent 11 hours there. The surgical team sent me for a CT scan then referred me to the Gynae team on the 2 week pathway. At that point I was told I had a 10cm solid mass on my left ovary , smaller one on right ovary and free fluid in my pelvis. My CA 125 levels were in the hundreds ! So …now awaiting the “ plan” after having various scans. Everyone, including me , thought everything was bowel related. Hope this answers your question and you aren’t worrying about any symptoms.

Sending a hug - keep strong x