OC - unsure - undiagnosed

Hi guys, can i just say hopes and good wishes for you ALL on this forum,

 Ok, the reason i am here is this - it started in Dec 08, i missed a period for 8 days then it came late, heavy and clotty (not like me at all).  The next  period was the same and so it carried on (was getting really hacked off), then i noticed i started to look pregnant (started around march - i think), i still look pregnant and it does not go away, more recently i noticed that i have an urgency not frequency to urinate, i am spotting between periods, i have alot of abdomen pain, constipation, back ache, can't eat a full meal, and this may sound strange but like my stomach is being pulled down and here is the strange part like my lungs are being sqashed (like when you are far into a pregnancy.) and somthing that is probably not related but for about 2 months i  have also noticed my right breast drop and it feels different, i also get quite a bit of pain from this (especially right side of breast, into armpit and the nipple is very sore) i was thinking this may be hormonal due to whatever is happening down below, i went to my GP 2 weeks ago explaned all this (except for the breast thing), she did some blood work including CA 125 which wasn't too worrying coming in at 47, i went for an abdoinal scan yesterday and the sonographer said she looked at my ovaries and womb and saw nothing but some fibroids, and i am due to see the gyn/onc tommorow morn, the one thing that frightens me the most is (again this may sound strange) not finding anything at all then it takes me back to square one of what the hell is wrong, i feel i can't talk to family about what is happening as my hubby's mum died of aggressive cancer 4 years ago as her mum AND dad did before her, and my mother is an ENT cancer nurse as well as pallitive care nurse and i don't want to worry her unnecessarily, i hope you guys can help me out a little with what may be going on.

Thankyou.

Ok i went to see the GYN/ONC yesterday (well his Registrar) and i feel kinda fobed off a little, the first question he asked was "you went to see your GP, WHY", so i explained my symptoms and said that she refered me for a pelvic scan, he then said "your docter has been naughty and fast tracked you through the system by sending you to a cancer clinic rather than normal gyni unit", i felt like saying if more women were fast tracked due to these symptoms maybe more lives would be saved, he has said i have to go back to my GP and look at the possibility of IBS and bowel problems, he has also told me to cut down on caffine (because i drink normal tea) and gave me a leaflet with pretty pictures on it that explains which food and drinks can irritate the bladder, i am guessing that is because i told him that one of my symptoms was an urgency to wee.  He has given me a prescription for Cyklokapron and Ponstan for my heavy bleeding, one thing he did do was give me an Endometrial Pipelle and said the results will be ready in 2 weeks and also sent off a wee sample (for any infection i guess), i think he did this to shut me up cause i mentioned that IBS would not make me bleed during periods. I feel totally crappy now, i am back to square one, there may be nothing serious wrong i.e cancer, but i feel like my GP did everything she could and then when i got to the hospital they made me feel like i was wasting thier time.  I really don't want to be a bother and by going to see my GP i feel like i will be creating for nothing.

hi! this sounds like the NHS to me!!! did nobody care that your ca 125 was 47? slightly elevated; can u see a gyn/ob/onc? due to neglect, my ovca was already 3c, so as well by most people on this site: so try & get someone to listen! harriet

Thanks harriet, i don't know where else to go, they have done scan which showed nothing barr fibroids (i did have a 4cm cyst on my overies when i was 19 but it did go away on it's own) , when i explained to the GYN/ONC my GP refered me with my ca 125 being 47 and the other symptoms, the GYN/ONC said "we have NO record of this and besides the ca 125 is non specific and means nothing, and your scan came back ok", which is why he really made me feel like i am making a fuss over nothing.

 

On 7/15/2009 cosmicjade26 wrote:

Thanks harriet, i don't know where else to go, they have done scan which showed nothing barr fibroids (i did have a 4cm cyst on my overies when i was 19 but it did go away on it's own) , when i explained to the GYN/ONC my GP refered me with my ca 125 being 47 and the other symptoms, the GYN/ONC said "we have NO record of this and besides the ca 125 is non specific and means nothing, and your scan came back ok", which is why he really made me feel like i am making a fuss over nothing.

I would go to another gyn/oncologist....fibroids can cause pressure, etc., and enlarged abdomen, but you have to rule out ovarian cancer,

A CT scan, or even a PT scan ..as it shows cancer anywhere.

Don't give up finding answers.

sealover

 

 

 

On 7/17/2009 sealover wrote:

 

On 7/15/2009 cosmicjade26 wrote:

Thanks harriet, i don't know where else to go, they have done scan which showed nothing barr fibroids (i did have a 4cm cyst on my overies when i was 19 but it did go away on it's own) , when i explained to the GYN/ONC my GP refered me with my ca 125 being 47 and the other symptoms, the GYN/ONC said "we have NO record of this and besides the ca 125 is non specific and means nothing, and your scan came back ok", which is why he really made me feel like i am making a fuss over nothing.

I would go to another gyn/oncologist....fibroids can cause pressure, etc., and enlarged abdomen, but you have to rule out ovarian cancer,

A CT scan, or even a PT scan ..as it shows cancer anywhere.

Don't give up finding answers.

sealover

 

 

Please, please, continue to pursue your situation. You need a CT scan and probably it is ascites that has you bloated with fluid. Ascites is often an indicator of OC. I had the ascites and it made so much pressure in my abdomen that the diaphragm was irritated and produced ascites in my chest cavity which made it difficult to take a large breath. The swelling in my abdomen made me nauseous and a very small meal filled me up quickly. A CT scan showed the tumors in the area of my uterus and ovary. Also the ascites fluid that was drained out showed evidence of cancer cells and that was how a firm diagnosis was made.

Do NOT stop pushing for testing and a diagnosis. You can save your life!

Hugs,

Ann

 

It is strange how one patients experience can be so different than another.  My wife went to her PCP on a Monday complaining of just a tummy ache, and he sent her to get an x-ray same day.  Same doc called after seeing the x-ray and said he had scheduled her for a CT scan .  By Thursday we had an appointment at the GYN/ONCOL who confirmed the CT Scan and scheduled surgery the next Monday.  The GYN/ONCOL removed a large 5 inch ovca mass and she started chemo a few weeks later.

I certainly don't know the advantages of one kind of scan over another, but the CT scan was all the docs needed to see, I would imagine a sonogram might have yeilded the same conclusions in my wife's case...a 5 inch mass would be hard to miss... 

 

Sorry to hear you are having such a negative experience with your GYN, etc.  The only sure way to detect cancer is with a PT scan.  The CA125 works for some, but not all.  When my CA125 was 50, they did a PT scan and I needed chemo right away because the cancer was growing.  Prior to being DX'd in 06 they ran CT scans which showed nothing, but the PT scan showed lots of ovarian/peritoneal cancer.  Now my oncologist watches my 125, but gives me a PT scan just to make sure it is giving us a reading that is safe. 

Don't give up, seek a second opinion.