Initial symptoms and diagnosis

AlbertaKat

I joined this group to get advice about dealing with a recent discovery of a large complex cyst on my ovary. My doctor has advised me to wait and see for 8-12 weeks.  She says it would look silly if she refers me and the cyst goes away on it's own.  She wants to send me for a follow up ultrasound, and then refer me if it is still a concern. I'm reluctant to wait as I've had worsening symptoms for almost a year. I was busy and ignored symptoms until this past August.  Pelvic pain and pressure, urgent/frequent urination, constant lightheaded/dizzy- not vertigo- & everyday feeling that something is wrong.  

Initially, were any of you advised to wait and see?  If you were diagnosed in early stages, did you have symptoms?  

kastoyles

@Albertakat    My doctor (and I) at first thought it was my irritable bowel syndrome acting up. We were both wrong.... an ultrasound showed a "mass" on my right ovary.  I would ask for the ultrasound right away. I would rather look silly and be sure there is no problem instead of letting something go another  8-12 weeks!  Especially since you have had symptoms for a while. Don't wait! Get it checked out.

CurlyHair

Hello @AlbertaKat I think I would consider obtaining a second opinion.  If you have persistent pain that is uncomfortable you could consider the ER.  I did that and was diagnosed.  

Jeannie

I agree with @kastoyles and @CurlyHair. It’s better to be safe than sorry. 

tigerlily

I hesitated for a few weeks before I went to see a doctor - turned out the bloating and discomfort was the build-up of ascites around a large cancerous tumour on my ovary.  In hindsight I would not hesitate.  I tell all my friends and colleagues .... you know what is normal for you - if something is not quite right, and it lasts longer than three weeks, and your discomfort is increasing - get it checked out as soon as you can. As @Jeannie and @CurlyHair and @kastoyles all said, better safe than sorry. 

MarilynOCC Moderator

Hi @AlbertaKat.  Welcome to OVdialogue.  What a great question and you have received some good feedback from the other women.  I understand your anxiety about waiting.  I would also encourage you to ask your doctor for further follow up sooner than 8-12 weeks.  If you feel uncertain how to do that, here are a few suggestions:
- make a list of all the symptoms you  have had over the last year, when they started, when they got worse and how what is happening now
- write down all your questions and concerns so that you can remember them and can present them in a coherent way
- consider taking someone with you to the appointment with the doctor for moral support.  You can decide if you want the person to just listen or be more active in the appointment and also ask questions.
- be clear with your doctor that you don't want to wait 8-12 weeks and ask what can be done sooner.  The three tests that are available initially if ovarian cancer is suspected is a transvaginal ultrasound, CA125 blood test and a pelvic exam.  You may want to ask for a CA 125 blood test and another ultrasound.  The CA125 blood test is not reliable by itself but sometimes when used with other test results, it can help in the diagnostic process.

Do you have someone that you could ask to go with you?  Do you think that would be helpful?

AlbertaKat

Thank you all for the replies.  I went back to my doctor today and got a referral to a gynaecologist.  Now I'm just waiting for the appointment time.  I really appreciate your support and advice.

CurlyHair

Hello AlbertaKat.  I was actually seeing a gynaecologist regarding a cyst on my ovary and the next thing I knew I had ovarian cancer and I did display some symptoms but it had advanced.  

AlbertaKat

Hi CurlyHair.  Yes-I've read that it can be an incredibly quick progression- and I have worsening symptoms that match patients diagnosed with later stages of ovarian cancer. I've asked for a complete hysterectomy asap.

Flowergirl

Hello @AlbertaKat - I have been thinking of all you have been through so far and I'm very glad to hear you have gone back to get that referral.  One saying that comes to mind is: 
"If it is persistent, be insistent!"
Thank you @Marilyn for those great suggestions on how to present to a health care provider.
Thanks to one of our members.... A timely and  interesting article on the web and social media today: 
http://canadajournal.net/health/ovarian-cancer-starts-6-5-years-turns-deadly-says-new-study-58907-2017/
And thank you @kastoyles, @Jeannie, @tigerlily @CurlyHair for sharing your stories and encouragement. So glad to have this site and hope it helps to reach out to more women.

For anyone impacted by Ovarian Cancer, hope you can share some lesser known symptoms as well.

AlbertaKat

So a phone call today from the doctors office informing me that the gynaecologist refused the referral. a week delay to my treatment for him to consider the referral and refuse it.  I'm speechless.

CurlyHair

Hello @AlbertaKat I do not understand why a gynaecologist would refuse you if you have symptoms.  But what I can suggest based upon my own experience is if you have constipation, bloating, feeling full or an inability to pass gas I recommend you walk right into an ER as I did and ask.  I was seeing a gynaecologist at the time as well. If you were to have ovarian cancer and you developed ascites you would know it at some point because it would be uncomfortable, not painful.  Distension 

AlbertaKat

Thank you CurlyHair.  At this point I'm past just complaining about symptoms.  I've been diagnosed with a large complex cyst and I need It removed.  If it gets worse- or if the delay continues, I will go to ER.  Thank you for your reply.

AlbertaKat

Further to my last comment... it was suggested to me today that the gynaecologist perhaps refused my referral because he knows he should have looked harder when I was his patient.  Maybe he felt guilty- or simply didn’t want to deal with unhappy patient.  

terrylee

Good luck @AlbertaKat and keep being persistent. One thing I have learned is we have to be our own advocates. 

AlbertaKat

Thank you Terrylee.  It’s difficult not to second guess...  They aren’t concerned- maybe I’m overreacting.  Maybe it’s not so bad.  I should just be patient.  
Then everyday my symptoms are worse, and I am reminded of friends/colleagues who are let down by our health system.  And I want to yell to make them wake up.   Listen to me.  Fix me.  Please.

terrylee

I can't imagine what you're going through AlbertaKat. It's tough enough navigating the system in the best of times. 

AlbertaKat

Being able to get advice and support on here has been incredibly helpful. Then I thought how ridiculous I was being for being willing to share with strangers, but not my loved ones.  So I started a blog and shared it with my husband.  I believe it saved our marriage.  Then I shared it with my family and friends.  Which saved my sanity.  It’s been life changing.  I still have to deal with this god awful thing in my life, but I feel better able to cope.

AlbertaKat

I have an appointment!  I’d been emailing with the receptionist and I asked if the doctor had seen my emails.  He had not, she brought them to his attention and has agreed to see me next Monday.  Wish me luck!

tigerlily

That's wonderful @AlbertaKat !  I will be thinking of you next Monday wishing you the very best.  And it's amazing that you are connecting back with your husband and your family and friends.  That's the best part.  Kudos to you for hanging in there and persisting!

AlbertaKat

Thank you tigerlily. while some days I can write, and others I can’t string two sentences together, I will continue to try.  

CurlyHair

Good luck @AlbertaKat.

MarilynOCC Moderator

Hi @AlbertaKat!  Glad to hear that you have an appointment!  I assume it is with the gynecologist?  I outlined above some thoughts you might want to consider in preparing for the appointment.  You mentioned that you have asked or want to ask for a hysterectomy to remove the cyst. You may not have ovarian cancer, so if that is completely ruled out, your gynecologist may want to discuss surgery with you. However, if ovarian cancer is suspected, you can ask for a referral to a gynecologic oncologist.  In this case, it is important that any surgery be done by a gynecologic oncologist.  Studies have shown that there are better outcomes if this specialist performs cancer-related surgery.  Hope all goes well on Monday!  

Its amazing how this experience has changed your relationship with husband and family and friends!  What prompted you to start a blog?  Have you done that before?

AlbertaKat

Thanks CurlyHair!  Thanks Marilyn!  Yes, it’s with a gynaecologist, and I’m just going to him for the referral to the gyno-oncologist as I could not get a direct referral.  That is exactly what my research told me- results are better, and since they cannot rule out cancer without doing surgery, frankly I’m not willing to take a chance on “well it’s a low probability...”
I want it out.
Never before have I written a blog, no.  Actually this group is what gave me the idea- I’m sharing my personal thoughts/experience with you all, and the support was really positive.  I decided to write the blog in order to help others- and have an easier way to share my challenges with my loved ones.  Incredibly helpful!!  You’re welcome to check it out at www.albertakat.ca
also a very positive environment at Wordpress.... lots of supportive bloggers helping each other.  It’s a new world.

Flowergirl

Hi @AlbertaKat... thank you for sharing your story, and the blog site.

AlbertaKat

@Flowergirl
as difficult as it was/is to be vulnerable with others, I think it’s the best thing I could’ve done. Thank you for reading.

AlbertaKat

Ok so I’m having a moment this morning.  My gynaecologist appt is at 11 - what do I do if he refuses my request to go to a gyne-oncologist?  Tells me I’m over-reacting or that we need to ‘wait and review’ like my family doctor did.  Can he refuse?  I’m picturing myself responding with “guarantee in writing that this large complex cyst is 100% not cancer, or refer me to the professional I want for treatment!”
I’m so distrustful of the medical community- I wish I could just relax and trust that they’ll do the right thing.  But they seldom do.

MarilynOCC Moderator

Hi @AlbertaKat.  I did read your blog and understand why you feel distrustful of the medical community.  But maybe this doctor and this appointment will go better than you expect.  You might want to consider just being honest with the doctor and tell them about your fears and anxiety about this.  That may help you and the relationship with the doctor and how they might respond to you.

Are you taking someone with you?  That might help and also have someone to strategize with you about your reaction based on the different ways the doctor might respond. The doctor may suggest a repeat of the transvaginal ultrasound depending on how long ago you had one and/or a CA125 blood test.  You could ask about it if they don't suggest it.  This is not a definitive test but used in conjunction with an ultrasound and your symptoms (be clear about these)  it may give the doctor more information for a potential diagnosis.  Or, you may get the referral to a gyne oncologist. 

I think most women find these kind of appointments anxiety producing so you are not alone.  It is hard not to know what is going on in your body and to have to wait to find out.  Do you have tools that help you calm down and relax?  Even taking a few deeps breaths can sometimes help - and talking about it here and with people close to you as you have been doing.  You might want to check out the discussion on anxiety to see if there are any tips there that might help.
https://ovdialogue.ovariancanada.org/en/discussion/33/anxiety/p1

Hang in there and let us know how it goes...

AlbertaKat

Follow up:

I still require a second ultrasound before surgery will be considered- he said that NO oncologist would agree to see me without a strong indication of cancer. So no referral to oncologist without proof that the cyst is growing/changing.

So I don’t have any choice but to wait for another month or so, have another ultrasound and hope the cyst goes away on it’s own. Wish me luck.

MarilynOCC Moderator

@AlbertaKat.  Well let's hope it goes away on its own.  It is always possible and in the meantime you have a new blog to express yourself and connect with your family and friends and a new community who can relate to what you are going through.  

AlbertaKat

Thank you for your support.