Help me catch my breath...

savvywoman

March of 04 I have a hysterectomy because of endometriosis and large fibroid tumors that were causing me a great deal of pain. I requested that my ovaries be left intact as long as there wasn't any medical reason to take them. At that time I had no reason to suspect I had cancer and the word was never mentioned.

For about a year now I've been experiencing vague symptoms including abdominal pain, fatigue, gas, bloating, and most recently painful bowel movements and occasional bowel incontinence and urinary incontinence. I've had a transvaginal tape (Nov. 02) and do my exercises quite often so the urinary incontinence was particularly disturbing especially since it seem to start happening all of a sudden. The abdominal pain has been getting worse as has the gas and though I wouldn't have thought about it as a symptom I did notice that my waist had expanded quite a bit.

Fast forward to today. I finally decided to go back to my OB/GYN and based on my symptoms and research I was quite sure I had at the very least a recurrence of the endometriosis. However, I also had this funny feeling that it might also be ovarian cancer. My OB/GYN did an exam and poo pooed both my diagnosis (since I no longer have a uterus how can I have endometriosis again) but just to humor me did a CA-125 and scheduled a sonogram. Today I got the results and found out my CA-125 came back elevated. After getting over the initial shock of what that could mean (yes I do know there is a high rate of false positives) I called back to move my sonogram forward as it wasn't scheduled for another 3 weeks. As it is I'm still going to be waiting another week and a half for it. When I called to move the appointment up I was told that my Doctor said it wasn't necessary but they did it anyway at my insistence. I don't know what the levels were and though I'd love to call back and ask I'm afraid to because at this point I feel like my doctor isn't taking this as serious as I am. I don't have any family history to look at because all the women in my family have died in their late to early 40's (all cardiovascular diseases) with the exception of my mother. She had the whole enchilada removed when she was 27 so if there was any history to look at I'm not likely to know.

So in the meantime I'm going crazy here and all the research isn't helping any. Frankly, I don't know if I trust my doctor to make a correct diagnosis since she doesn't seem to be taking this serious. I realize she isn't suppose to be an alarmist but at what point should she be taking it seriously? Am I blowing this out of proportion? In my mind, she should be doing every test possible as quickly as possible until she can prove definitively one way or the other that I do or don't have cancer. Am I being unreasonable? Should I keep pushing and insisting? What kind of test should I be having? When should I insist on seeing an gynecological oncologist? Should I insist on a biopsy based on one elevated CA-125 reading? Should I get another reading? What did some of you go through when you were first being diagnosed? Did you feel like no one was listening to you? I guess I'm just looking for some reassurance here that everything that can be done is being done. Any feedback here would be appreciated.

mopar

My situation: Diagnosed with endometriosis at 18. 45 years of age discovered a uterine fibroid. My doctor had the good sense to do a CA125 (I was not aware of such a test). Came back elevated, he sent me to an oncologist because 'that would be his area of expertise'. I will always be greatful for my doctor's good sense (I had been seeing him for 28 years!). Oncologist did a hysterectomy, hoping to leave at least one ovary, but found Stage I on the ovary. Removed everything including omentum, some lymph nodes too. Tumor ruptured on removall, so had Carbo/Taxol 6 rounds. Today, 5 1/2 years later, cancer free, but have a lymphocele that I am going into surgery for, as they don't know what it's source is. Now, I had NO symptoms intially when I had my first surgery. So I was extremely blessed that the cancer was caught early (also no family history) Given your symptoms I would seek out a good gynecologic oncologist. Bring all test results (including lab) and insist on a thorough follow-up. Maybe a CT scan, PET scan. CA125 can fluctuate for many reasons, so they cannot use that alone.

Despite my concerns for you, please know that these days there is so much that can be done, regardless of the severity of this disease, IF THERE IS A SITUATION AT ALL. If your insurance company requires a referral for the oncologist, maybe your doctor will be kind enough to give you one. Otherwise, see if you can pay for at least a consultation with an oncologist - it will be well worth it.

Don't give up - please keep us informed. There is a wealth of information here, but more importantly, support and lots of hugs. I'll be praying for your answers and the cooperation you need.
Monika

savvywoman

mopar said:

My situation: Diagnosed with endometriosis at 18. 45 years of age discovered a uterine fibroid. My doctor had the good sense to do a CA125 (I was not aware of such a test). Came back elevated, he sent me to an oncologist because 'that would be his area of expertise'. I will always be greatful for my doctor's good sense (I had been seeing him for 28 years!). Oncologist did a hysterectomy, hoping to leave at least one ovary, but found Stage I on the ovary. Removed everything including omentum, some lymph nodes too. Tumor ruptured on removall, so had Carbo/Taxol 6 rounds. Today, 5 1/2 years later, cancer free, but have a lymphocele that I am going into surgery for, as they don't know what it's source is. Now, I had NO symptoms intially when I had my first surgery. So I was extremely blessed that the cancer was caught early (also no family history) Given your symptoms I would seek out a good gynecologic oncologist. Bring all test results (including lab) and insist on a thorough follow-up. Maybe a CT scan, PET scan. CA125 can fluctuate for many reasons, so they cannot use that alone.

Despite my concerns for you, please know that these days there is so much that can be done, regardless of the severity of this disease, IF THERE IS A SITUATION AT ALL. If your insurance company requires a referral for the oncologist, maybe your doctor will be kind enough to give you one. Otherwise, see if you can pay for at least a consultation with an oncologist - it will be well worth it.

Don't give up - please keep us informed. There is a wealth of information here, but more importantly, support and lots of hugs. I'll be praying for your answers and the cooperation you need.
Monika

Thanks Mopar for your reply. As you can see I'm not sleeping much. I'm glad things have been going so well for you and hope it continues that way.

A few things I forgot to mention is that I'm 45. I'm also experiencing some pretty consistent nausea. It seems to be worse in the mornings when I first wake up. I told my husband just the other day that if it weren't for the hysterectomy I'd swear I was pregnant. The nausea has gotten much worse just in the past month.

I appreciate your advice on going ahead and paying for the initial consultation with a GYN Oncologist. I had already considered doing that but wasn't sure if perhaps I was blowing things out of context. Would you do that right away or wait to see if the sonogram showed anything? People around me are starting to give me that look like its all in my head and though my heart knows its real a part of me is wondering if I am just a crazy person blowing things all out of proportion.

mopar

savvywoman said:

Thanks Mopar for your reply. As you can see I'm not sleeping much. I'm glad things have been going so well for you and hope it continues that way.

A few things I forgot to mention is that I'm 45. I'm also experiencing some pretty consistent nausea. It seems to be worse in the mornings when I first wake up. I told my husband just the other day that if it weren't for the hysterectomy I'd swear I was pregnant. The nausea has gotten much worse just in the past month.

I appreciate your advice on going ahead and paying for the initial consultation with a GYN Oncologist. I had already considered doing that but wasn't sure if perhaps I was blowing things out of context. Would you do that right away or wait to see if the sonogram showed anything? People around me are starting to give me that look like its all in my head and though my heart knows its real a part of me is wondering if I am just a crazy person blowing things all out of proportion.

You could wait for the sonogram, but then you'd have to wait for results (would they get them to you ASAP?). So, that may involve another couple of weeks. And who knows how long it will take to get an appt. with the gyn/onc. So, I guess you have to find the best scenario for you. Personally, if you're not happy with your current doctor's position on this, I'd just go ahead and get that appointment with the specialist. As far as blowing it out of proportion, I'd rather deal with the minimal consequences of that than deal with the alternative of waiting too long.
My best to you. Let us know how it goes.
Monika

Juliamber

Hello Savvywoman,

I think we are both in the same boat. I am 48 years old, three children and a hysterectomy of my uterus only. I still have my ovaries. I have a lot of the same symptoms you have plus they found a very suspicious growth on my ovary but want to wait until end of February or beginning of March to see if it is growing. In the mean time I am getting a colonoscopy on February 6th to see what, if anything, is happening there. If I was in the states and not Canada I would book myself in with an oncologist but, here in Canada, you can't do that, you have to be referred.

Like you, I am starting to doubt myself and feel like a bit of an alarmist. There is tons of cancer in my family but I still doubt myself. Silly huh. I have been reading this site alot and seem to relate to all these ladies here.

I hope everything works out for you.

groundeffect

I had surgery to remove uterine fibroid tumors removed, leaving my uterus and ovaries intact, when I was 42. After that surgery, I felt good and healthy until the spring after I turned 48. That's when I started having mysterious things happen, but the only thing I found out from all the testing was that I had fibroids again. When I started having very serious bleeding in Aug., I was given a double shot of progesterone to stop it and knew I had to make a treatment decision before the shots lost their effect.

My right leg was a bit swollen and bothered me a little, but I didn't point it out to the doctors I was seeing, and it wasn't obvious, so I put up with it. I ended up in the hospital at the end of Aug. with a pulmonary embolism-the leg swelling was caused by blood clots, which I found out could be a symptom of lower body cancer. My ob/gyn came into the hospital and did a uterine biopsy and found uterine cancer. When I had my hysterectomy, ovarian cancer was also found. Fortunately, they were both Stage 1 - the uterine 1b, the ovarian 1c.

You certainly see a gynecologic oncologist. Another diagnostic tool I've heard recommended is a color doppler ultrasound, which can show cancer as a hot spot. I had a cat scan, vaginal ultrasound (black & white), and some other tests that didn't show anything but the new fibroids.

It can be very difficult to convince doctors that you might have something that they may not be entirely familiar with. Family history should be looked at for BOTH parents. If there's a genetic defect on either side, it can be handed to you. I went to a seminar a while ago in which a genetic specialist spoke, and she said that both parents are equally suspect. She was also the one who suggested color doppler ultrasounds.

A biopsy is unlikely-I don't think I've ever heard of one for suspected ovarian cancer (someone please correct me if I'm wrong!) because of the likelihood of rupturing a tumor if it exists.

Because a CA-125 can be elevated by other problems, it is not reliable, and even worse, may not be elevated at all for a lower staged ovarian cancer, so it's not dependable at all.

This all said, please be firm in your pursuit of what's wrong. I found it somewhat helpful to read Fran Drescher's book "Cancer, Schmancer". She was young (just under 40) when she started having symptoms, and kept being poo-poohed and flattered when she'd go to different doctors trying to find out what was wrong with her. She was finally diagnosed with low-stage uterine cancer, but easily might have ignored what was going on until it was much worse. You are "young" to be considered for ovarian cancer, but don't let that deter you. Anyone with ovaries can have it occur-I was shocked when I read about a girl having "pediatric ovarian cancer".

One other thing I thought about is that I thought if endometriosis occured out of the uterus, that it had a possibility of reoccuring after a hysterectomy (because of the possibility of tissue attaching outside of the uterus). I just did a Google search and found it mentioned on a number of sites.

I'm going on way too long, but want you to know you're doing your best, and keep at it! Don't be afraid to question or press your doctors-you're their customer, and they need to do their best for you! I've gotten some looks when I've asked things, but I'd never let it stop me from pursuing anything that I feel is wrong, and have lost any embarrassment of describing symptoms. They've heard all of those, too!

Isabel76

I got those symptoms to begin with too, and when I went to my doctor she incorrectly diagnosed me with a bladder infection. Three months later I am diagnosed with stage three ovarian cancer. I am OK now, but every day i hope and pray. You should never wait for these things. Its not worth the risk. If your doctor doesnt seem to be taking it seriously you must change doctors. I also had to do a lot of pushing to begin with ....all the waiting for texts and scans etc etc sent me almost crazy - I couldnt believe they would let me wait...but I know that sometimes its just so busy and the health profession do all they can, but sometimes its not enough. Sometimes you have to do the pushing. I believe you have to take control a bit and do the instigating of things. If you want a test or a scan ask for one and make sure you get it. At the end of the day it is your health. Don't wait for anything and do your utmost to get it seen to straight away.

Isabel76

OH and if you want to ask me anything - please feel free to ask away (as your symptoms sounded incredibly similar to mine - mine started off as a cyst on my ovary that was left too long).

savvywoman

Hello everyone. I decided to wait and see what the sonogram turned up. What we found was a small fluid filled cyst that didn't seem to be anything to worry about. My understanding is that only solid or complex cyst are a posible problem. She did say that they could see growths on the outsides of my ovarians but those growths were more consistent with either scar tissue or endometriosis. I also found out what my CA125 reading was. It turned out it was only 21 which according to by GYN was the threshold for abnormal with this paticular test. That did make me feel better but I'm still worried about the symptoms.

My doctor wants me to have a colonoscopy done to rule out colon cancer or any other possible colon problems that could be causing my symptoms. If that doesn't turn up anything signifcant she wants to then do a Laparotomy or is that Laparoscopy? I always get those two mixed up. Anyway, at that time she would removed my ovaries and any diseased tissue. It looks like no mater what happens I'm going to be into March before they get a look inside at my ovaries.