Please help.

[Klee62485]

I've had chronic health issues since January 2014. I was hospitalized for kidney issues and was pregnant at the time. I have birth during my long hospital stay. I had my daughter prematurely. I contracted many kidney infections and stones, I had tons of scans then they found out I had a sliding kidney. Long story short I finally had surgery on April 21,2014. After the surgery I continued to lose a lot of weight. Before my surgery I was already down past my pre-pregnancy weight. I looked sickly and complained of what I thought was bladder pain. I had many ultrasounds of my bladder and kidneys and everything was healed. I'm pretty sure y doctor was convinced I was having anxiety vs real health issues. I continued to complain about my stomach pain, weight loss and bloating. I had several ER trips because it hurt/s so badly to urinate. I would always have high blood in my urine, WBC, extremely high sed rate and crp levels but they always told me my blood work looked great and that there wasn't anything wrong. On this past Friday morning I had extreme pain to the point where I was doubled over, my already bloated stomach was getting bigger so I called friend to see if she could take me to the ER (she's a nurse so I like to have her with me) on our way to the hospital we got in a car crash and I was hit on my side and someone hit the back or us causing the seatbelt to cut into my already tender stomach. The EMT guys knew me from my transfer earlier in the year. They from the start were skeptical of my pains. I showed them my stomach and told them about my pains. The guy was very condescending web he spoke to me with his skepticism of my pain. I told them that I'm stoic so I'm not one to overreact in pain. When we got to the er they told the nurse that I "supposedly" had bloating and I quote him "even though her stomach is soft" he also said she claims she has a high pain thresh hold but has a 8/10 pain scale. I was so embarrassed. Well what they said must have done something because the doctor sent me for an x-ray and have me blood work. 6 hours later he comes in and tells me I'm fine. I said under my breath "I'm not fine, I'm in serious pain." Pain is subjective and these bs tests are ridiculous. They thought I was faking it and he didn't do a great job of showing it. I then start crying to him, telling him my past history. So he orders a ct scan to basically shit me up and says if there's nothing wrong I will send you to your urologist. Well it turns out I have several large masses growing on my uterus, ovaries and bladder. I just had an abdominal ct 2 months ago so I was on shock. Now I have to wait till Monday to meet my my doctor. I'm terrified of what's going on. I have two about the sizes of golf balls and the rest are about the sizes of walnuts. He said to follow up first thing Monday that there's nothing he can do, by now he almost seemed sympathetic. I do have swollen lymph nodes but I always assumed it had to do withy kidney. I also have anemia. I know this whole thing was log but I'm scare. I have two young babies and I keep thinking the worst. I don't know what I expect for responses I just needed to vent. Thank you all, peace ad love, Klee

[Zannah]

Hi Klee,

I'm not surprised that you needed to tell us about your situation, you have been going through an awful time.

If there is a good side, at least you are now being taken seriously and a plan for your treatment should be put into place soon.

I'm sending you my love and a very large virtual hug.

Please keep in touch to let us know how you get on when you have your appointment tomorrow.

Love

Zannah xxx

[Klee62485]

Thank you for the reply Zannah. He said several on both ovaries, uterus and bladder. He was pretty vague and just said what I said above :/ and basically said to get in touch with my doctor. The good news is my obgyn is also my primary, he also told me to make an appointment with my urologist. He's a little harder to make an appointment with. I'm really praying it's non-cancerous and trying not to be too consumed with assuming. How long does the process f further testing take? My primary doctor is really awesome so she likes to stay on top of stuff.

[BJ_UK]

Hm - are you by any chance in the States? I ask because you refer to your primary doctor rather than your GP (i.e. general physician), and appear to have been told to contact your urologist directly rather than to ask your GP for a referral. Most of us on this site are in the UK, so might not be able to advise you on how best to navigate your health care system.

What I would recommend, though, is that you make sure that a gynaecological oncologist either does your surgery or is on hand for the surgery and able to step in if necessary. It does sound as though you are likely to need surgery, though at this stage it is not likely that anyone will be able to tell you with certainty that you have cancer - it is only a possibility that they have to bear in mind. The problem is simply that without surgery they can only give you probabilities. As you say you've had a baby recently, you are young enough that your problem could well be something much more benign, such as endometriosis.

Other tests that you can expect to have are a transvaginal ultrasound and a CA125 test. The CA125 test is a test to look for a marker called CA125, which tends to be elevated in women with ovarian cancer. The cut off for normal varies depending on which variant of the test you have - it's 35 for the one most commonly used in the UK. CA125 seems to be a marker for pelvic inflammation rather than directly for cancer - endometriosis tends to make it go up too. It is also quite possible to have a normal level but still have cancer - it is only an indication, not a surefire test, so don't panic if you have the test and it comes back high!

As for how long this will take, I don't know. In my case I went to see my GP on September 16th, had an ultrasound on September 26th, a CA125 test on September 27th, saw a gynaecological oncologist (i.e, a surgeon specialising in gynaecological cancers) on September 29th by which time they had the CA125 test results, knew it was probably cancer, and had booked me in for surgery on October 18th. I had a CT scan October 10th and met the surgeon who actually did my op on the 11th, by which time she had the CT results and was able to reassure me that although it was likely to be cancer, it was also likely that it was early stage. (It turned out to be a stage 1a mucinous adenocarcinoma of my right ovary.) So from first seeing my GP to having surgery was just over a month.

You have already got one of these stages out of the way, as you've had a CT, so I would guess that things might well move pretty quickly. Have you got family or friends nearby who can give you support, particularly if you do need an operation? Have you someone who can attend your medical appointments with you? These are things that you can usefully turn your mind to now, and taking care of them will help you to feel a little more in control of the situation. Get a notebook in which you can write down any questions you want to ask, leaving space in which to write down the answers you get, and take this with you to your appointments. If you have anyone attending with you, they can take charge of this and remind you of your questions, as well as taking down the answers. If it is bad news, you might find it difficult to remember your questions in the shock of hearing the news - I know I did.

Good luck, and do let us now how you get on. We do care!

[thesilent1]

Hello Klee. The other ladies have already given you great advice. Good luck. Ann