Ovarian Cancer - losing hope - think I'm in stage 4

[lynne39]

Hi there, I used to be a healthy 39 year old – in the last seven months I’ve been in severe decline.  Experiencing sharp abdominal pain, extreme nausea & fatigue, chills, pains in legs and joints, copious discharge, loss of appetite, bowel problems (not being able to hold it), and losing weight rapidly.  Recently I’ve developed a cough, chest pain and a lump swelling on my neck.  I’ve been through all the tests and then some, CT scans, colonoscopy, pelvic exams, transvaginal ultrasounds, blood tests like CA-125, chest xrays, and they’ve come up with nothing.  Ovaries seem normal – but I’ve heard of cases of ‘shedding’ cancer cells.  How on earth can this get detected? I've been told it's IBS, anxiety, nerves, etc., and I just can't take that seriously now.

I’m on sedatives to take the edge off the nausea and pain somewhat.  What more can I do?  Does one just sit back and wait until something finally shows up – perhaps fluid in the lungs?  I really feel like it’s already too late – any suggestions at all?  

[lynne39]

Hi Tybear, sorry to hear about your brother - I hate this IBS handout.  

I'm amazed you didn't have any symptoms, that had to be a terrible shock.  Glad to see you're posting strong for nervous nellies like me.  

[lynne39]

Hi cath81, yes - I've seen about 3 or 4 doctors (finding new ones in Ontario are like finding needles in a haystack) and the waiting times to see specialists can take up 5-6 months.  People have died waiting for a proper diagnosis :(

I can't believe they made a mistake on your mom's ovca diagnosis - I know it happens, but that's just another blow on top of everything else :/

I'll have to look more into the PET scan - it might be worth it - and you're right, I don't think I'll get a laparoscopy unless something does show up.  

Thanks so much for the advice, I'm going out of my mind - literally.

[cath81]

hi, your symptoms certainly sound worrying. i am also skeptical about the IBS diagnosis.

based on experience though, ovarian cancer usually can be detected by scans and the CA-125 blood test. if your results have been negative so far, it would be logical to conclude that something else is causing your problems.

i understand from your post that you have already been referred to several doctors? are those all from the same hospital?

since you sound extremely worried (and rightly so) about your abdomen pain and discharge, may i suggest that you consult another gynaecology from a different hospital? scans are usualy accurate, but there is still a possibility for error.

i understand your anxiety... yet i am hesitant about reassuring you as others have done because my mum's ovca diagnosis was delayed by three months due to a doctor's mistake.

it is better that you see another reputable gynae to find out for yourself. also, you might want to find out more from him about other possible causes for your problems.

you might also want to ask about a PET scan. it will be costly but if there are any inflammation in your body, it will show up in the scan.

i don't think doctors do a laparoscopy for you if nothing is showing up on the scan. because it is an invasive and risky procedure, they would usually want to know what they are looking for first.

hope all goes well for you. and do get that lump in the neck checked out as well. whether it's cancer or something else, i hope you can still lead a fulfilling life... you're only 39... :)

best of luck.

[Tybear]

Absolutley don't give up - we know our bodies the best and if you truly believe that something is wrong, then keep pressing on!
I agree that IBS is a diagnosis that is handed out when doctor's don't know what to tell you. My little brother just got told that's what's wrong with him and I don't believe it for a second.
I really do hope you can find some answers...what about seeing a new doctor, starting over with a clean slate and new tests? There has to be a reason for all of your symptoms and I guess the best thing to do is start ruling out things, one by one.
An odd thing about this disease - I had virtually no symptoms when I was diagnosed stage 3c. No fatigue, none of the bowel issues many deal with and no pain. It was a CT scan that showed my stomach full of tumors and even then, I still believed there was no way it was cancer. I felt probably the best I'd felt in years...go figure.
Good luck to you,
Becky

[Ramsay14]

Don't give up trying to find the answer to your problems Lynne!  Keep pressing the doctors for answers.  Something is going on with all those symptoms.  Don't let the doctors poo poo you and tell you that you have IBS.  I really believe that IBS is the answer doctors give when they don't know the answer.        

[lynne39]

Hope I'm replying properly to your response, I'm a bit of a computer luddite here ..

I realize that all of you have been through so much and in many ways I don't feel I have the right to post - it just seems all the symptoms are adding up - I have been shuffled around to several doctors - and have constantly thought to myself - do I just beg for a laparoscopy?  Would that make things even worse?

I understand I must sound extremely paranoid but I'm not prone to hysterics - I just seem to have all the symptoms of cancer, extreme fatigue, pain, nausea, weight loss - I guess all I can do at the moment is tough it out.  Hopefully, something will show up.  

I really appreciate you responding  - thanks.