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?  

[ireneo]

Looking over your long list of symptoms I can see where some of them are subjective, that is, they have to take your word for it - fatigue, pain, loss of appetite. But there are some solid issues there - discharge, lump on your neck, loss of bowel control, weight loss - that they should find the cause. Sounds like you've had a lot of tests but something's not right. Have you tried a different doctor?

[lisaru]

Hi Lynne,

Are you saying they have said you do NOT have ovarian cancer? If so, why do you suspect that you have stage 4? If they have run all these tests, including an ultra sound (vaginal) and have ruled this out, I am not a doctor, but I would assume they are accurate.

You may wish to get a second opinion if you are not satified. There could be another explanation for your symtoms.

[Tybear]

I'm sure anyone with those types of symptoms would be frightened however, I think it's a little premature to come onto an ovarian cancer forum because you *think* you have stage 4 cancer. I don't know what else the doctors can do for you...but as far as detecting ovarian cancer goes, a trans vaginal ultrasound, CT scan, CA125 and surgery are about as good as it's going to get. Beyond that, if they've told you that you don't have ovarian cancer, I'm not sure why your still concerned about it. I would think that if you were stage 4, your CT scan would show masses in your pelvis and abdomen, at the very least.
It's very possible that something else may be causing your symptoms - there are many other diseases that can mimic the symptoms that ovarian cancer causes.
I hope you find some answers for yourself...instead of fixating on the idea that you *think* you have ovarian cancer, maybe you should be looking at some other diseases so that you can find some relief for your symptoms.
Best of luck to you...
Becky

[Ramsay14]

In *most* cases of ovarian cancer, the CA-125 is elevated with stage 4 disease.

[Ramsay14]

In *most* cases of ovarian cancer, the CA-125 is elevated with stage 4 disease.

[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.

[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.        

[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

[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.

[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.

[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 lisaru, I've heard of other ovca cases where the once disease has reached the lungs, building up pleural effusion and cancer cells being concentrated in that, as well as enlarged neck lymph nodes - it's normally at Stage 4.  Seems like the internet can be your best friend and worst nightmare when you're sick and scared.  

Yes, in the process of getting another opinion.  Thanks for the info, I really appreciate it.

[crecco]

lynne,
   I am not going to lie to you and tell you that nothing is wrong. You know your own body better than anyone. It took over 3 months of Dr visits and treatments for other things, including IBS and depression, before ovarian cancer was found.
  I have to admit, reading your list of symptoms really worries me. The CA125 test is not always reliable and CT scans will not always show everything. I think that it is time to take matters into your own hands. If it is that hard to find another Dr, then go back to yours and demand that he find out what is wrong. Tell him to prove to you that you do not have ovarian cancer. In the meantime, you can still be looking for another Dr. That way if something does turn out to be wrong, you will be closer to finding a better Dr.
  That is a big problem that many of us run into, as the symptoms mimic symptoms of other less serious ailments and many Drs tend to over look that and consider us "paranoid". The ACS issued a list of symptoms last year along with a sidebar saying that if you are experiencing these symptoms and they are all new to you and they continue for more than 3 weeks, see your Dr. A PET scan is a good idea as is an MRI and if your Dr hesitates, demand that he do something.
  I wish you the very best in all aspects, from getting your Dr to listen to you, to finding a new Dr, and that everything will be just fine. Just remember, you know your body better than anyone and your Dr is there to serve you, make surethat he does just that.
Keep us informed.
    Chris
  

[lynne39]

Thanks Chris, will look into a PET and MRI scan - very glad I have found this site, and hopefully get some answers from the medical community.  Really appreciate your feedback.

[Tybear]

Hi Lynne...
I hope your able to find a doctor to help you out. Also being from Canada, I will give you a heads up that PET scans are very hard to get - I've had cancer for almost 4 years now and have never had one. I know Princess Margaret Hospital has one machine but most of the regional hospitals don't have them.
There is a private clinic in Mississauga that you can pay to have them done - I do believe it's rather costly, but if it will bring you peace of mind, then it's worth looking into (especially if you aren't satisfied with just a CT scan).
Good luck with things,
Becky

[marie3B]

Get that lump on your neck biopsied asap.  You may get an answer from that.  You may need to complain of horrible pain to get it done soon.  I knew I was sick for years before anything showed up.  When it did show itself I was stage 3B/C.  I don't want to scare you, but I don't want to pacify you either until you know with certainty that all is well.  I have a slow growing cancer that is hard to find early. Marie

[SimplyStar]

I am not a doctor  but I am taking an educated guess as to how you might approach  this, at your age you are  entering the menopause , this affects the endocrine system, the hormones affect every cell and function of our body. the swelling in your neck , to me, was an important symptom, the fever and chills also, weight loss, it is all tied up with the endocrine system.  Go find an endocrinologist and have a work up done,   it just might be that your body is telling you that there is a depleation of certain hormones  and  they need to be replaced.  Some women have a body make up that makes the menopause a real rough time to go through, most all of this can be figured out by getting certain blood  and urine tests done.  A metabolism test is usually done also.  good Luck  marty