My Ovacome

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How quick is the process from your own doctor referring you to getting treatment ??

Faith_2021•

I'm new here yesterday I had a gynaecological examination at my doctor's my doctor told me straight away that she was referring me as an emergency urgent case as she is sure I have cancer of the ovaries .

I have 4 teenage children & I'm a single parent.

I'm wanting to know how quickly others got to see a specialist. Also when did treatment start. ?

27 Replies

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Hi Firstly that would be very unusual for a GP to say that they are sure you have cancer and to be honest totally wrong for them to say that. Even when I was referred to the hospital and had an examination by a Consultant and an operation booked having undergone both an ultrasound scan, a CT scan and an MRI and I said I knew it was cancer the Consultant said nobody can be sure of anything until the op and then they test what is removed. If you are being referred then the timescale from referral to op for me was 2 weeks which follows the government guidelines if cancer is suspected although I am not sure if that has altered due to Covid but I don't think so. One thing I will say is stay off google, seek information from reliable sources such as this site (you can call the helpline) or MacMillan. Google wont tell you what will happen to you and statistics tend to be outdated. I wish you well. Please let us know how you get on. Big hug. Kathy xx

Thank you I will keep you informed / updated

I agree with Kathy but my GP also told me I had Cancer and she was right. I was in Hospital 2 weeks for tests and not diagnosed until the day after I came out, so you can see my GP was jumping the gun. My op. wasn't as quick as Kathy's. I wish you all the very best. Sue xx

Thank you Sue . Thank you for sharing your journey with me & thank you for the well wishes

Hi Faith

First of all I am sorry that you are going through all this.... it’s a worrying time for you.

If you are in the UK you will be referred as a ‘two week wait’ which does what it says on the tin. However... you may find delays either at this point or to get further investigation underway.. due to the pandemic.

Don’t be afraid to ask, chivvy up appointments if you need to. My diagnosis took nearly two months to the point when I started chemo. So it can take time for clinicians to be sure that you have a particular cancer and then make the right plan to treat it. xx

Hi Lindy

Yes I'm from the UK . Thank you for your understanding .

My Dad has stage 3 Oesophageal Cancer. He was diagnosed a day before my Birthday in October he started Chemotherapy Christmas week he has finished his second round of chemotherapy . Today he is having a specialist scan to see if the Chemotherapy is working & to see if the cancer tumour is shrinking . The end of this month he is having major surgery .

I have had non benign tumor in my cervix before.

I have had severe pain in my pelvic area & in my pelvic bone pelvic area too . Sharp stabbing pains . I have also had a lot of trapped wind for weeks too & I have had shooting pains in my back. I thought being bloated & having excessive amount of wind was because of IBS.

I saw my GP on Thursday 7 November 2019, she took a blood test and called me back in to see her the next day when she broke the news that it looked like cancer. This was only a provisional diagnosis as further tests needed to be done to confirm it. The following week I was in hospital having 7 litres of ascites drained from my abdomen, and an oncologist there confirmed that it was cancer.

A week or two after that I had an appointment with another oncologist who gave me big picture information about possible treatment plans etc.

In late November I was told that I wasn’t a good candidate for surgery at that point but would need to have three rounds of chemo and then they’d look again. A week or so after that I had an appointment with a clinical oncologist to talk about starting chemo - she got me admitted to the ward from the appointment, and three days later I had a biopsy. Two days after that, chemo started. So all in all it was just about a month from GP to treatment rather than just management of the symptoms.

I have two teenagers and with the timing of everything managed to impact an 18th birthday (just home from hospital), a 16th birthday (chemo), two rounds of mock exams (one in hospital immediately after diagnosis, and the other by having major surgery), as well as basically all of their GCSE and A-level years! I think they’ve forgiven me... 😉

I hope all goes well for you, and your appointments come through quickly. The Macmillan nurses at hospital are fantastic and ever so helpful when you have questions or things need following up.

How are you now ? Are you in remission ? Do they normally do operations before chemotherapy ?

How did you cope sorry what's ascites ? What stage cancer do you have ?

Blessings to you .

I’m stage 4, unfortunately, but doing well. So far no one has used words and phrases like remission, or no evidence of disease, but I know the surgery was successful in removing all visible traces, the follow-up chemo went well and my Ca125 (the cancer marker in the blood) kept falling. I’m now nearly at the end of my year of three-weekly Avastin treatments and generally doing very well. I’m back at work and have even managed to start running again recently!

Whether they operate immediately or do some (usually 3 or perhaps 6) rounds of chemo first depends on a number of things. For me, the amount of ascites (a fluid produced in the abdomen as a result of the cancer) meant that they couldn’t operate immediately, but the first three rounds of chemo cleared that up completely so the op went ahead last March (a year ago tomorrow in fact!).

I’ve been really fortunate with a very supportive family and friends, and a fantastic boss, great colleagues and generous employer, but am aware that not everyone is so lucky, sadly. I hope things go as well for you x

Wow you are an inspiration thank you for sharing this with me . One has to be positive & have to fight & not give up. Thank you for explaining what Avastin is & & explaining what ascites is .

Hi, if you need well-informed, evidence-based knowledge coupled with listening ears to help you through this all, do ring the Ovacome Support Team on 0800 008 7054. Ovacome's website (see top right-hand corner of this page) offers all sorts of factual guidance, webinars as well as this support community platform.

I really hope your GP has got it wrong, but mine didn't; he knew straight away and apologised later for being so 'shocked and abrupt' but I'd had no symptoms, just went to see him because I felt a swelling above my pubic bone and had had three tiny spots of post-menopausal bleeding over the previous 12 months. Many people on this site had repeated visits to their GPs before theirs pinpointed the problem. I hope she is wrong, but you are 'blessed' if she is right.

Ovacome runs 'Survivors Teaching Students' which enables those of who wish to talk, in a structured way, to medical students and nurses on our experiences of diagnosis and treatments.

Warmest good luck, fingers crossed and if it is ovarian cancer, start building your 'A Team' around you to enable you to tackle this with all the positivity you can muster. Lots on here will help too. Lx

Thank you Lesley so much . How are you now ? I will write the number down.

I have heard the saying years ago that ovarian cancer is a silent killer as you say some don't get any symptoms.

I have just had my blood test today I have to phone them up Thursday afternoon. If they get the results sooner they will phone me up.

Thank you for sharing your experience with me .

Blessings x

Hi again, my first occurrence was 2011, diagnosed as clear cell stage 3c and recurrence Jan 2013, when I was immensley fortunate because when my oncologist said another operation was 'too risky, mortality rate too high', my GP backed my request for a second opinion with a specialist centre at Queen Charlotte Hospital, London where Prof Christina Fotopoulou and her team were able to remove all the visible tumour. More chemo for 6 months but I've had no recurrence since. Have long term side effects of lymphoedema in legs and genitals (all lymph nodes removed because the cancer in there), peripheral neuropathy in feet and hands (from chemo...but more known about this now) and both lenses in my eyes replaced due to rapid development of cataracts due to the steroids. But, I'm almost 75, still enjoying life hugely including walking, riding an electric mountain bike and recently started wild swimming in the loch in a wetsuit!

Fingers very much crossed for you. L x

Hi Faith,

You should hopefully see someone within 2 weeks, and like others lm surprised that she mentioned ovarian cancer they really don't know without proper tests & scans et. ,

So please try not to worry some 25 years ago

I had to have a growth on my ovaries but it wasn't cancer at the time. So try not to worry

Things are taking a little longer with covid but

I think as this vaccine get things moving so will everything else. Hopefully your appointments will be very soon any delays ask your Doctor who she's referred and ring that Doctor secretary and tell her your situation they usually sort it for you. When you've got 3 children and

a single parent you need a plan of action, which lm sure you'll get very soon hopefully.

Just keep positive & and try not to worry about something that hasn't been proven yet.

Best of luck sending love & hugs to everyone

SheilaFxxx

Thank you Sheila for your advice & sharing what happened to you. How are you now ?

Im doing ok Faith, like you lve had things before in the past had 3 brain operations for a tumour l now have a programmable valve in my head to keep me stable. Had that done 2007 and thats been very successful l'd spent my life falling and being classed as clumsy. Then eye test & the rest is history.

So then after having a hysterectomy 30 years ago they left my ovaries because l was

only young big mistake. Anyhow no good looking back. Diagnosed in 2017 with ovarion cancer has the de bulking operation in Oct that year. Then they said l was clear but unfortunately l wasnt so l had another op to take out a lymph node in the bowel in 2019

They realised then that it had spread. So l had 6 months every 3 weeks long sessions of carbo/taxol most of the time felt ok really and it did the trick my ca 125 went from in the thousands to 9 its know 10 which is brilliant.

Just having problems with my bowels at the moment. But hadnt seen any Doctor from 2019 until last week ld had scans & blood tests in between but was anxious about not being examined with my bowel problem not in any pain but look pregnant not a good look at my age . Anyhow Doctor who was brilliant who l saw the week before last at Christie's

He's referred me to a bowel specialist which l know will take a bit longer at the moment

with the covid situation. But if you saw me you wouldn't honestly think there was a thing wrong with me. You've got to stay strong eat well & stay positive and get help and advice of all these lovely brave women on here ,and the advice line. And your Doctors Amazing how much hope you get on here. Please keep in touch and let me know how your doing. Sending love & hugs xxx SheilaF

Thank you for sharing what has happened to you & your journey . Wow you are an inspiration . I will keep you updated had my bloods taken today .

So sorry to hear you're going through this. It's good you're being referred immediately for investigation though.

I have Primary peritoneal cancer which is very similar to OC and is treated in the same way.

I was referred on 11th june 2019 and had my first chemo on 15th july 2019.

I was told I wasnt suitable for surgery but after 3 treatments I was scanned again and told that surgery would then be possible . I had 3 more chemos after.

All OC and PPC patients now have genetic testing and I am Brca2 positive.

I'm currently taking a Parp maintenance treatment which is tablets twice a day and I feel fit and well.

If your results are positive for OC you will be given lots of information and you'll have a specialist nurse who should be a great source of support for you.

The Ovacome team are brilliant too for advice as are many of the ladies here. Between them they seem to have come across every possible problem and success. They are wise, always kind and ready to listen so keep in touch.

All the best

Liz.xxx

Thank you Liz

What's the genetic testing is it where daughters would be tested ?? Sorry what's Brca 2 positive mean ?

Sorry for all the questions. Thank you for sharing your journey so far with me . How are you now ?!

Brca 1 or 2 positive is an inherited faulty Brca gene. It can mean an increased risk of certain cancers but it doesnt mean you will definately develop cancer .

The increased risk is after a certain age I believe.

Adult family members will be offered a test and if positive will have the great advantage of being offered annual screening as well as preventative surgery if they choose to. You may remember Angelina Jolie having a bilateral mastectomy as she is brca1 positive.

Patients who are positive may be given different treatments.

If you do have ovarian cancer (I'm still hoping your GP jumped the gun) you should be offered the test.

Do hope I haven't scared you.

For us, my daughter and myself finding out about the gene has been a good thing, forewarned is forearmed after all. She read somewhere about how many women will have the gene and just not be aware.

Good luck.

Liz.xx

Hi Liz

Yes I remembered Angelina Jolie having the operation .

I have just got my appointment the letter came today my appointment is Tuesday 16th March at 09:00.

Thank you for sharing that information with me.

Hi Faith - I am sorry you are having to go through this but you haven't yet had a definite diagnosis so try stay positive.

I was diagnosed after a CT scan (my GP was convinced it was nothing to worry about but wanted to be sure) on 27 February 2020, saw my GP the same afternoon and saw a Gyne Oncologist on 5 March. I then had a biopsy to confirm it was cancer, saw my Oncologist on 7 April and started Chemo on 17. I was given the option of postponing it for a few months because Covid has just raised its head but chose to start straightaway, The onset of Covid may have delayed things a little bit but I don't know. Had my op in July 20 finished chemo on 5 October 20 and have just continued on immunotherapy since (had my 13th yesterday so only 5 to go). Last scan in early Jan was okay.

Fingers crossed your doctor is completely wrong, x

Thank you Lesley for sharing your journey with me . Glad your last scan was okay do you still have to keep having blood tests & scans ? Sorry what's immunotherapy ? Is it something to do with your immune system?

Hi Faith

I am due for a bloodtest in two weeks, and am speaking to my Onc on 12 March because he hasn't been in touch. I had my first scan on 11 Jan after my last chemo (5/10). Although the Macmillan Gynea Nurse Specialist said everything was positive when I rang her, I'm not sure what the process actually is, eg - scans and at what intervals or just blood tests for a while and then another scan, or a mixture! So I spoke to the nurse at my treatment yesterday and she said to make an appointment to speak to my Onc just to go through everything.

Re immunotherapy, it's a drug which targets cells producing a certain protein which helps cancer cells to grow a new blood supply. It reduces oxygen, etc, and aims at stopping tumours growing or shrinks them. Sort of like throttling them to death I suppose! That's my understanding anyway, but you can ring the Ovacome Helpline for better info!

Hope things go well!

Lesley

Thank you Lesley & thank you for answering my questions that I asked you about my hospital appointment is 16th March .

Blessings xx

What country are you in? Your gp should arrange if she hasn't blood test CA125 plus I presume she did an ultrasound so next is MRI and CT scan to see what's going on. Then they usually do exploratory surgery and collect biopsies and then a treatment protocol is prescribed based on all the data collected. Good luck and don't go nuts with the waiting once you know what's going on and treatment starts you will be better.

I'm in the UK . I had a blood test today FBC & the other was for kidneys .

My hospital appointment came in the post which is the 16th March .