unknowledgable and frustrated

[ontariocanada]

I am afraid I wont be able to give you very many details because I dont have those myself.  I will tell you what I do know.  I am a 36 year old mother of 4.  I went to a family doctor back in the fall because I had menstal cramps daily, that would worsen through period, my periods were coming and going as they pleased, I was having to urinate constantly, bloated, pressure in my lower pelvis, and a constant pain on my left side.  He sent me for a pelvic ultrasound and I never heard back from him again.  Then near the end of December I had my son into the dr and asked about my ultrasound and was told that any abnormalities and they would have called me to book a follow up appointment but if I was still having issues to make an appointment to come in and see him in January.
Well by this time I still had the same symptoms along with having constipation followed by diarhea and feeling like I had a 9 month fetus pushing on my lungs.  Finally in the beginning of January I had 3 days of such bad pain on my left side from the back to the front that I went to the emergency room thinking I had a kidney infection.
After all tests had been run, she wanted to send me for a pelvic ultrasound.  I told her I had one recently and it had been fine.  She looked it up and I had a complex cyst on my left ovary with a solid mass and it was suggested that I have a followup ultrasound 6-8 weeks later.  This was of course already 8 weeks later and the first I had heard of it.  I received pain pills, an ultrasound appointment for 4 weeks later, and told to have my family dr send me to the gyno.
I saw the dr who got me an appointment with the gyno for June.  Went for my second ultrasound and on the followup visit with my dr (that I did not wait to hear from him for) was told that it was bigger and that there was no way I could wait for June to see the gyno.  He told me that if the gyno he set me up with cant see me sooner they were sending me to windsor.  He wouldnt give me a lot of info but I did see in the results something about calcification on the outer bladder wall, something about my endometrium layer needing to be looked at and that I should be sent for a CT scan (which he never did set up for me).  He did send me for a whole slew of blood work including that CA125 I see brought up frequently on here.  I also have another ultrasound booked for March 25th.
Finally I heard back from the dr's office and see a gyno next Monday and hopefully will get some answers as to what is going on with me.  I took another trip to the ER on Friday of last week as I felt like I had a babies head sitting in my birth canal, and I am not pregnant!!  I dont know how much longer I can live with this pain, or how long I should be expected to.
Can anyone shed any light on the little info I have given.

[ontariocanada]

I went to the doctor today and was told they were going to remove the left ovaryand mass and they are doing exploratory surgery to check the other ovary and uterus and such.  The problem I have is that the date that I was given is JULY 28th.  The receptionist said that she is going to do her best to get it moved up but that department at the hospital was off on holidays today and this is the soonest day she could book without speaking to someone.  She said that she should know if it will be moved up within the next week or 2 depending on how long it takes to get through to someone and if there are any cancellations.  
I also asked about a way to manage the symptoms in the mean time and basically was told pain meds and heating pad is all that can be done.  I have been doing that already and some days are hard to even get out of bed, I cant imagine another almost 4 months of this.  Hoping for a quicker date, keep your fingers crossed for me

[ontariocanada]

So I went for what is hopefully my last transvag u/s today.  Even the u/s tech said to me "you were just here Feb 8th, why do they keep sending you back?"  I told her briefly and said that the reports keep saying to bring me back in 6 weeks to which she responded "why dont they just do something about it instead of watching it grow?"
Anyways, she did the ultrasound and when she left the room for me to redress she had left pictures on the screen with volume measurements of my uterus, and ovaries.
It said my uterus was 12.117 ml , my right ovary was 3.17 ml and my left ovary was 36.18 ml.  Does anyone know, would that include my cyst?  I mean it must because I cant imagine that large of a difference in ovary size but could anyone confirm that for me?  
Now I get to spend the day with the cramps and pains that come with these u/s.  At least there is a light at the end of the tunnel now.............hopefully.

[Carcinista]

I agree: CA-125 is not a good barometer for how sick you actually are. When I was first diagnosed, mine was 133. Now in recurrence, I'm at 37. There are too many false positives, too - endometriosis, menstruation, GI problems. And even an increase (and no, four points in three weeks is not uncommon) may not indicate anything; it's a continued pattern over time that becomes more informative.

DON'T freak out, but keep moving forward. And don't stop asking questions until you are satisfied with the answers.

[manneca]

CA-125 is simply not a reliable marker for diagnosing ovarian cancer. Mine was 34 two days before I was operated on for a 7.5 pound tumor. I fortunately was stage 1. Some people can have cancer and still have CA-125s in a normal range. I had transvaginal ultrasounds and all sort of other tests. It was only a CT scan that showed the tumor that got my docs off the dime and ready to do surgery.

[heartbroken912]

when mom was diagnosed with primary peritoneal cancer, her CA125 number was 23,600 so I truly hope your low number is something that can be controlled.  Mom is still fighting for her life with che treatments at this time. Good luck in your appointment tomorrow.

[ontariocanada]

So I just spoke to the gyno office(the doctor is not in but he had the secretary pull my file as they are deciding what to do with me) and she told me that my CA125 results came back higher then last time.  The first test was done on Feb 25th and was 33 and this was done on Mar 16th and is 37.  Why would it go up in 3 weeks?  I think that 37 is still pretty low compared to some of the numbers I have seen posted but should I be more concerned about this now?  Any responses are appreciated, you guys are my life line right now.
Thanks

[ontariocanada]

I absolutely hear what you all are saying about gyn/oncologist.  That is actually what I meant when I talked about my gyn/internalist being a great doctor.  When I saw him he said that we would see what the results from my tests were and decide then what to do and who should do it so I have every reason to believe that he will send me to a gyn/oncologist if required.  Thanks for all the information in what has been a stressful and frustrating time for me.  I am not jumping to any conclusions, and really hoping that my cyst/mass/tumor can just be removed and no cancer, and judging by my numbers, I think I have every reason to be optomistic about that. My frustration came from having a doctor not tell me things and just not having the knowledge I needed.  You guys have really helped me alot with making me advocate better for myself so thank you and I will let you all know what happens at my next appointment.

[Carcinista]

The reason we all keep recommending that you see a GYN/Oncologist is that they may be more familiar with the potentially serious (read: malignant) nature of some of your symptoms in a way that a regular GYN or OB/GYN would not be. Also, if you schedule a laparoscopy in the future, you should make sure that a GYN/Oncologist will be in on the procedure - results of surgeries are vastly better in these cases. It's definitely worth finding the exact right doctor, but I don't think you'll need to change unless your symptoms turn out to be cancerous. Be wary, though - it's easy to misconstrue things.

Glad to hear your fever and infection are under control. Keep us posted.

[ontariocanada]

I have not been diagnosed with anything other than a complex cysts/mass on my left ovary.  I have had 2 ultrasounds and go for another on Thursday, I have had 2 ca125 tests now but just had the second so dont have the results back from that yet.  
As for my fever and issues, I spent 10 hours last night at the emergency room to find out that my fevers are being caused by a soft tissue infection in my throat(which would explain the sore throat I got 2 days after the fever started) I am on antibiotics now and will hopefully feel better before I go back to the gyno on April 4th.  

I actually live about an hour away from 2 different cities that have excellent oncology departments.  I know that the gyn I saw is actually an internalist, not just an obstetric gyn and he has a great track record.  I have read patient comments on him and he frequently uses the cancer clinic in the bigger city when needed.  I believe that I am in good hand with this doctor.

[kcd86]

Hi, I have been reading the posts and unless I missed it I don't see what your sonogram showed?  Blood tests like CA125, Inhibin A&B, MIS and CEA are just used as a guide for the Dr's to help assist in making a diagnoses(Dx). Surgery will be the only way for the Dr's too make a definitive Dx and staging if needed. I ceretainly agree with Carcinista that "You are getting the royal run-around"!!
From reading your symptoms and the Dr saying "you felt full on the left side" You need to have a Cat scan!! Please make sure they draw your blood for the following blood tests,Inhibin A&B, MIS and CEA.
I would immediately find a good GYN/Oncologist as soon as possible!! I would reccomend going to a large tiertiary hopsital where they see large volumes of patients.  This is not to make you worry even more but to make sure that the Dr who treats you has vast experience with diagnosing and treating various types of GYN / Onc isues if that is what it turns out to be. Also make sure when you go for your Cat scan / MRI that the Radiologist specializes in GYN/ONC. My wife went to a radiology practice that does all types of MRI's and the Radiologist read her MRI as a fibroid. I then took her to Sloan Kettering in NYC to see a GYN/ONC who had the MRI repeated by a GYN/ONC Radiologist who called her DX to the tee which was confirmed after surgery.
The best advice you see all over these posts is you have to be your own advocate, be aggresive and stay on top of your phycicians. I am enclosing a good and reliable web site you can go to to educate yourself, www.***********.com/patients
Good Luck

[Carcinista]

If you're in treatment and you have any kind of persistent fever, call your doctor. Even the on-call doctor or whoever covers off-hours. When you're dealing with potential illness like cancer, any infection can get serious. They should want to know about it!

[ontariocanada]

I have been extremely week for the past couple of days.  I have had a persistent fever that will come down on meds and goes right back up at the 4 hour mark.  I think that it is the fever making me feel nateus.  Anyone have any ideas to make it go away for good?

[ontariocanada]

Another question I forgot to ask, and maybe there is no answer, but my cyst/mass/tumour is slow growing apparently.  Is that a good sign?  

[Carcinista]

Glad to hear the meeting went well. "Fullness" is the sort of non-specific symptom that frustrates everyone about this disease, doctors AND patients. It could be a tumor filling your left side, or ascites, or just a full colon. It sounds as if this doctor is taking your requests seriously. GOOD.

[shewrites]

Sounds like the gyn is "on the job."  Two weeks is not very long to wait.  

If they want to do any type of surgery, you should request a gyn/oncologist be involved.  They have more training and experience, and you want to get it right the first time (a line I'm stealing from one of the other ladies on the forum).  

Good luck.  

[ontariocanada]

Well I met the gyno this afternoon.  He went over my reports and did a pap test (I have had displacia in the past) and did an internal exam(which I thought was going to kill me).  I have another ultrasound set up for the 25th and he said that my tumour marker blood test was slightly elevated so he is having that redone.  I go back to see him again in 2 weeks so he will have my newest ultrasound and blood results back and decide from there what we will do and who will do it.  He did say that I felt full on the left side when he did the internal (not sure what that means and didnt think to ask at the time).  2 more weeks of waiting and then I should have some kind of answer.  At least this doctor seemed genuinely interested in helping me and wants to make sure he treats me the right way.

[Carcinista]

Let's see what I can answer:
1. Ask about your CA-125, ultrasound results (transvaginal?), whether they want an MRI, and WHEN your laparoscopy will be. That is really the ONLY way to tell what's going on. And when they do the laparoscopic surgery, will they take the ovary or not? (If they discover it's cancerous, everything must go. Expect 6 wks to recover from hysterectomy and then chemo.) Ask them who else you should consult with - make it a foregone conclusion that you will seek a second opinion. You can gauge a lot about a doctor based on their reaction to this: if they're supportive and open, that's good. If they pooh-pooh it or seem offended, RUN to another doctor.
2. Period should not matter. This is too important to wait.
3. Depends on whether the mass is benign. Often, cysts resolve on their own, but if it's bothering you so much you probably want it removed. Ovary can come out too, as long as you have your other one (and aren't planning for more children). The hormones will be maintained with one ovary. But if it's cancer, it'll all come out.
4. Family history makes no difference (I had NONE) if they find cancer - they'll treat it and it will come back or not, regardless of family history.
5. A laparoscopy is something I would INSIST on, with your symptoms. It's quick, and if they find nothing malignant, you'll be on your feet the next day. But it's better to have an actual look. INSIST ON A GYN/ONCOLOGIST doing the procedure.

Good luck - I'm sure you're nervous, but being as informed as you are will give you a ton of power and leverage. You might also want to have researched the location and name of the nearest/best GYN/Onc in your area and have the name to drop.

Keep us posted!
Sarah

[CMfromTX]

Dear OC...

I am new to this forum but not so new to ovarian cancer.  I was diagnosed in Sept of 2009 with all the same symptoms you are having.  My CA125, however, was much, much higher than yours (4000).

To answer your questions...
If you have OVC you will probably need surgery (complete hysterectomy).  
If your abdominal pain gets worse, you should go to the ER.  Shortly after my diagnosis I experienced a bowel obstruction - not uncommon with OVC, and very painful.
I can't say if you will feel better right away or not.  I was in the hospital for 16 days - lots of complications and still very fragile when I came home.  I did not begin to feel better until after the second session of chemo.

Best of luck,
Carlene

[ontariocanada]

I have a few questions for anyone who can answer them for me.
1- I will see my gyno for the first visit on Monday and I want to make sure that I dont forget to find out about anything.  Are there certain questions I should be asking?  
2- Will the fact that I will inevitably still be on my period when I go affect my appointment at all?
3- Should I be insisting on him taking out the cyst/tumour/mass on my ovary and would it be better if they took the ovary as well?
4- I do not have, nor do I have any way of getting my paternal family history when it comes to cancer so will that be an issue?
5- And lastly, if they remove the mass, will I feel better right away?  I just want the pain, pressure, sick feeling, constantly peeing, sore breasts, gas, pregnant looking  belly and the new fatigue to go away.  
6- With my symptoms is there another acceptable way of treating me without surgery or should I insist they take it out?
Any help to any of my questions would be greatly appreciated. I am a little nervous but so happy that I will hopefully have an end to the months of these symptoms I have been going through.
Also, on a more superficial note, any chance the weight I have gained will magically disappear or should I be buying larger summer clothes to go with my winter ones.

[chelan3]

There is a College of Physicians and Surgeons for each province.  You can follow the complaint process on their website.  
It's a good idea to document everything when it happens so it's fresh in your memory.

Good Luck.

[ontariocanada]

Does anyone know who I would report it to in Canada?  I have started keeping a journal because things like this should not happen.

[Katie116]

Report those doctors who did not respond with results and did not follow-up with the appropriate tests. In US, you would report to AMA. Don't know about Canada.

[Carcinista]

A CA-125 of 33 is not very scary. The key is to watch the number and if you're having symptoms for a long time, AND the number goes up, to investigate further. This is something your Gyn/Onc will discuss with you.

Good luck -

[ontariocanada]

I am not sure if this is in any way related but I just noticed that I have several little bruises on my legs and not sure how I would have gotten them.  Anyone ever get that?