Symptoms prior to diagnosis

[Hanneesweedie]

Hi, would anyone mind telling me about what symptoms they were experiencing prior to diagnosis and how they were diagnosed? Was it a struggle to get doctors to listen? Are there any younger people here who have been diagnosed?

Thanks!

[Bubbles-1]

Hi,

I'm not sure how old you are but I was diagnosed at the age of 48. My symptoms were irregular periods, bloating, right shoulder pain, prob feeling more tired. All quite subtle, thought I was on the change. Sex was also a bit uncomfortable. My Dr was brilliant, but there's a history of breast cancer so she was on the ball. If you have any cause for concern please visit your GP straight away and discuss your concerns. Wishing you good health xx

[Hanneesweedie in reply to Bubbles-1]

Thanks for the response, I’m 26. I typed out a detailed response in the thread.

[Hanneesweedie in reply to Bubbles-1]

Honestly, they don’t give a shit about my concerns, I’m just made to feel stupid. I went to try and get ovarian cancer blood test and FBC done today to see if there’s still abnormalities and it was a total waste of time.

[MartaCiom]

Hi prior to diagnosis 37 years old still on maternity with my 2nd child. All symptoms i have related to post pregnancy - frequent urination lower back pain loosing weight few kg i have contributed to busy life looking after x2 small children. 2months prior to diagnosis bloating and in Nov 2017 lump below belly bottom - immediately we thought fibroids...but it turn out to be mixed epithelial stage 1a oc (adenocarcinoma endometrioid, clear cell and serrous). I had some rush on my tummy in October could have been linked with oc too? Symptoms are not specific.

[Hanneesweedie in reply to MartaCiom]

Thanks for the response, I typed out a bit long reply on the rest of the thread haha.

[Hanneesweedie]

Thank you for your responses. I’m only 26, but I’ve read about people getting it much younger. I’ve been feeling shit for months now, if not years, and at the start of the year I had blood test abnormalities that I started taking notice of, in the past it was things like high platelets sometimes but then looking back I’ve noticed most things have been gradually getting worse. On my last check I had high platelet, raised ESR, and microcytic anaemia. I insisted on seeing a haematologist privately (doc wasn’t happy) and they said it didn’t seem to be anything actually in my blood, but that I should have a full colonoscopy for my bowel symptoms (had a flexible-sigmoidoscopy in the past). I’ve had my colonoscopy and all biopsies were normal and had an mri as he thought he saw some sort of distortion or inflammation in my small bowel. That’s also normal apparently. He’s going to perform a gastroscopy just to make sure he covers everything, but has said it’s highly unlikely he’ll find anything with that. He said it’s probably IBS but that wouldn’t explain my blood results, then he proceeded to ask about my periods. I told him that I’m on the pill (which I know is supposed to reduce the risk for OC) and that my bleed on the break week has been starting later and later. He didn’t really comment on that, as my GP hasn’t when I’ve mentioned it in the past. Basically I’m on a bit of a process of elimination to find out what’s wrong and to be honest, I’ve been worried about OC for a while due to the bloating and pains I experience. I wonder if ibs could be masking something else... I had a woman ask me when I was due a few months ago, not pregnant! I’m planning to go back to the doctors and ask for repeat bloods so I know if there is the inflammation or whatever still going on, I’m also wanting to ask for a CA125 blood test but knowing my doctors I’m sure they’ll say no, or if one person puts it through it’ll be blocked by the doctor in charge 😔. Sorry for the essay, just quite a long story!

[Hanneesweedie in reply to Hanneesweedie]

I forgot to mention the increased urination. I went to the doctors for it and I had a temperature, the dip stick showed no infection and they couldn’t send it off due to the weekend. But due to my back pain and the temp he gave me antibiotics. That seemed to clear it up for a while but I feel like I’m going more than usual again.

[Hanneesweedie in reply to Hanneesweedie]

My nan has reoccurring breast cancer, but she originally had it after the menopause which I think they say means it’s not a higher risk for the rest of the family?

[Neona in reply to Hanneesweedie]

My original symptoms were fatigue and a persistent pain in the neck. Blood test came back showing some inflammation and severe anaemia. Ca 125 was normal and I was diagnosed with polymyalgia. 2 years later the nausea started and when I couldn't eat I was sent for a scan. I was diagnosed stage 3c clear cell at age 56.

[Hanneesweedie in reply to Neona]

Thanks for the response, my blood test is showing inflammation and microcytic anaemia, or at least the last one was, they're refusing to do another one as I haven't been consistent with taking iron tablets (due to having a colonoscopy and MRI). However, their labs showed I had sufficient iron, it was the haematologist who suggested it as according to his lab thresholds I was borderline. But I just want to know what is happening with the inflammation etc..

[Neona in reply to Hanneesweedie]

I will have to google microcytic anaemia- is it different from iron deficiency anaemia. I think cancer caused iron deficiency anaemia in my case.

[Hanneesweedie in reply to Neona]

Well I think it’s when the red blood cells are smaller than normal, it can be caused by iron deficiency but according to the gp labs I wasn’t low on iron. However, different labs have different thresholds so according to a haematologist I was below and should take iron to see if my slightly high platelets went down.

[Neona in reply to Hanneesweedie]

Well doesn't sound the same as me but obviously you want to know the reason for it.

[Hanneesweedie in reply to Neona]

Yeah and with the tiredness, pain and bowel issues I just feel that something is wrong and want reassurance that it’s not, or something done about it if there is!

[Neona in reply to Hanneesweedie]

Private consultation?

[Neona in reply to Neona]

Mine cost £350.00 but would have been less outside London I believe.

[Hanneesweedie in reply to Neona]

Mm it’s something to consider, I saw a haematologist privately as the doctor wouldn’t refer me due to saying that I should have my bowels investigated first. Nothing has been found there and I’m not sure what is going on with my bloody anymore. I have seen a gynaecologist privately in the past so might be able to see him again without a doctor’s referral, that’s the person you should see about ovary worries etc right?

[Neona in reply to Hanneesweedie]

Yes or even better a gynaecologist oncologist.

[juliamillen]

I experienced bad bloating, lack of appetite, tiredness, breathlessness,

Pain in my upper chest (right side)

Frequent urination, weight gain. Hope you get your symptoms sorted out. Good luck!

[Hanneesweedie in reply to juliamillen]

Thank you, it's appreciated. I seem to be on a constant search for answers at the moment and so far nothing!

[Nstober]

My sister had bloating and lack of appetite. They thought it was a GI issue and thankfully the doctor ordered a CT scan for the lower pelvis region. Sometimes women are misdiagnosed with a GI issue so push for having your ovaries checked as well. What are you experiencing? Wishing you all the best. Nancy

[Hanneesweedie in reply to Nstober]

I’ve got bloating, weight gain, wind, stomach pains, back pain- my shoulders ache but it’s the lower back that’s actually painful. I also have bowel movements that are all over the place I.e switches from loose stools to being more like constipation in a matter of days.

[Hanneesweedie in reply to Nstober]

Also have blood test result abnormalities which suggest inflammation, although they can also indicate something more sinister according to my research.

[Nstober in reply to Hanneesweedie]

Push for it all including investigation of ovaries uterus all of it so it's not overlooked and can be checked off if hopefully nothing is going on there. I am so sorry you are going through all of this and at such a young age. Do you live in europe?

[Hanneesweedie in reply to Nstober]

Yes I’m in the uk, how is your sister doing by the way? Hope she’s okay!

[Nstober]

Thanks honey we are in the states. My sister went from an advanced diagnosis in January to cancer free my july. She had 8 chemos and surgery. This is a great site for of ladies of all ages. I hope you won't need the wise advice of everyone on this site but should you need it, it sounds like the ladies can recommend to you the best doctors to see in the UK. Sending you a hug.

[Hanneesweedie in reply to Nstober]

That’s incredible! Thank you for your kind words!

[Nstober]

Sending a big hug please keep us all posted.

[koffeekat99]

I would encourage anyone with unexplained abdominal symptoms to keep pushing for tests. Usually I’d say the CA125 blood test and ultrasound. Perhaps an abdominal CT as you say you’ve had an MRI which sounds like it wasn’t conclusive (or is that what showed up something, I’m not sure from your description?).

Certainly you need the reproductive system tests as well as the bowel tests before you can be labelled with IBS. IBS is a diagnosis after eliminating other possibilities.

My signs and symptoms included weight loss, no appetite, feeling full, bloating, frequency urinating, change in bowel habit that wasn’t consistent with IBS bowel habits, horrible pain around ovulation, clotty blood in periods, fatigue, discharge, anaemia, night sweats, dizziness, cramp pains in rectal area.

I was told even with all those symptoms that it was more likely to be an ovarian cyst. Apparently the last two similar cases at my GP surgery were cysts so they were really shocked when mine turned out to be cancer.

The point is keep pushing for tests to check the possibilities. It may not be cancer but it’s worth checking everything that is going on in your abdomen rather than just the bowel stuff.

Please try not to worry about this comment. Statistically you are younger than expected to be diagnosed with OC. I was repeatedly told I was ‘too young’ which in my case was not true. But I was unlucky. So I only say this so you are not fobbed off based on age. If you want a test but are fobbed off and told it is unlikely as you are ‘too young’ don’t accept that. Repeat your symptoms and tell them to work on that basis, not on an assumption because of your age. The age argument held up my diagnosis for several months.

[Hanneesweedie in reply to koffeekat99]

Mm they didn’t even want to investigate my bowel symptoms the first time around and then they were recommending I have a full investigation once my blood was showing abnormalities. The mri was for my small bowel because during a colonoscopy he thought he could see inflammation/distortion, that came back as normal though. No one has even mentioned the idea of any kind of reproductive system investigation. But I’m going to see what they say, I’m a bit of a pushover normally but I’m past that point at the moment because I’m fed up and do not want to be waiting any longer if something serious is going on.

[Hanneesweedie in reply to koffeekat99]

I want a blood test to see what the inflammatory markets etc are doing now, haven’t had one for 3 months and it could well have calmed down or returned to normality, but there last few have been abnormal. I tried to book in for one last week and the senior doctor at the surgery blocked it saying I needed to wait until I’d been on iron for 3 months (that’s what the haematologist recommended to see if my platelets go down). I want to know what’s going on with everything else though so going to try and get an appointment next week to ask for bloods and hopefully will be able to persuade them to do the ca125

[Hanneesweedie in reply to koffeekat99]

Unfortunately, they won’t even do a normal blood test to see if there’s still inflammation/abnormalities. When I saw a haematologist he said that I should take iron and be retested as that should improve my platelets. I have been taking iron on and off due to having a colonoscopy and small bowel mri, so now the doctors are refusing to give me a blood test until I’ve been taking iron for a certain amount of time. I was chastised like a child for not picking my iron tablets up that were put out for me 2 weeks ago, even though I’ve been too busy and dealing with other stuff. I made it clear that I want to know what’s going on with inflammation, raised ESR etc and said will iron improve that then? She said yes it’ll probably improve everything, not if I’ve got some undiagnosed illness you silly cow and the haematologist never said that would be the case! I didn’t even dare bring up about the ovarian cancer blood test because she made me feel so shit and stupid, I just knew that it would be shut down straight away if she won’t even do a FBC. So I just wanted to get out of that room ASAP and left the surgery crying 😭

[koffeekat99 in reply to Hanneesweedie]

Hi again.

Have you spoken to the Ovacome support line? You’ll be able to speak more freely with them about your symptoms, where you are in the country, etc. They’ll be able to offer support and advice specific to you including what to do from here. Lots of members of this group have spoken to them at one time or another, including myself.

They’re very knowledgeable so I think it’s worth you calling them.

X

[enzo14]

Hello

I had a lot of the symptoms and honestly I should of taken more notice of them, just ignored them and put it down to perimenapause, I was taken into hospital with kidney stones and. CT scan picked up an enlarged right ovary, USTV scan revealed a septated cyst after follow up with US and MRI it’s thankfully shrinking rapidly and resolving, but I would never ignore the signs again, push to get everything checked out x

[tara108]

Hi. I am sorry to hear you are having trouble with some medical folk! I would definitely get a CA125 blood test. It's simple, easy and fast. And have a catscan, or even better, a pet/cat scan which will show anything less than 1 centimetre and much less radiation. Keep going until things are found or not found!

I am not an expert and you may have something completely different. But I had urgency and frequency of the bladder for nearly 2 years and backache and fatigue, all missed as symptoms. I also had ascites and 2 litres of fluid removed during my operation. If you are looking 'pregnant' and have some of these symptoms, it's better to be thought a "nuisance" than be diagnosed with anything too late, so to speak, like many of us!

GP's don't have the experience with cancer and specialists can be a right pain!! Do your research here and elsewhere and get the tests done. 2yrs ago, I threw up all night for the 2nd time and went to hospital. They gave me an anti nausea pill and I felt better. Clever young Dr did CA125 blood test without telling me and surgery and everyone went into a huge panic when results came through. Surgeon said I had had it for 2 years.

Yours may not be cancer, but please make sure! Hugs from Australia.

[Hanneesweedie in reply to tara108]

I’m really trying, I’m just made to feel like a complete idiot though I didn’t even dare mention ovarian cancer and wanting that blood test today as they refused to even do FBC. I think they just view me as some sort of hypochondriac and don’t even bother listening, which does not make a good doctor or a good doctor’s practice. I don’t want to wait a month for my normal blood test to see if there’s inflammation or other abnormalities, let alone for the potentially life saving CA125. I just don’t know what to do right now! I was up all night worrying and then was happy to be able to get an appointment this morning, I thought I would have a blood test booked in and my mind would be put at ease a little, but that did not happen 😔

[tara108]

I am so sorry to hear what happened to you. Any chance of seeing a different Dr? It is such an easy, straight forward blood test for CA125. Can you take someone with you, who can politely but firmly say that you need this. I have been a psychologist for over 35 years. DON"T let them psychologise you!

Maybe you can phone the Ovacombe support nurse. The number is on this website. I think her name is Anna? (Chemo brain!) She is so lovely and I have called her twice from Australia. (I have been here for 33 years from the UK.) I am sure she can support and advice you on how to get that blood teat as she knows the UK medical system.

I have had a number of 'battles' with some Australian medical staff! I use my anger to give me the confidence to now be polite, but firm! And I always have a good friend with me who supports what I am asking for.

It is hugely anxiety provoking and it can take a while to get a good medical team together who understand and co-operate with us rather than just telling us!

Don't 'take on' their labels and try and get some sleep. Hang in there. Big hugs.

[Twinkle63]

Hi I was 39 when I was first diagnosed. I know you have had a lot of replies already but just had to add my bit as I feel so strongly about this. I feel I was ignored so many times by GP. They kept saying it was IBS, I have seriously drunk enough peppermint tea to sink a ship. I had bloating, constipation and tiredness for years. One day I was so ill I went to GP and just cried she looked at my stomach and arranged CT scan where a large cyst was found,unfortunately behind the cyst was stage 3 ovarian cancer. I am 44 now and unfortunately was diagnosed this year again.I had bad experience with Different GP they told me to go to sexual health clinic! I didn’t I went back to my oncologist who said cancer had come back. Sorry I am waffling but what I’m trying to say is you have to demand scans, tests and mri scans. Take one of the ovacome leaflets and get them to read it. Do not suffer in silence early detection is a must.

[Hanneesweedie]

Good news! I went to see another doctor who is allowing me to have the tumour marker blood test and my FBC and it’s happening tomorrow so hopefully it won’t be cancelled by the practice owner or something stupid 😒 I’m sure the doctor thought I was an idiot but at least I’ll (hopefully) get some reassurance.