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The waiting game? Some test results.

Makgirl Makgirl

The waiting game? Some test results.

Posted by Makgirl on Dec 22, 2020 1:43 am

Hello! Brand new here. I’ll try to keep it brief as possible, but I’m wondering if anyone has gone through something similar? 

I’m in my mid thirties and have been having intense stomach pain over the last couple yrs. Chalked it up to food poisoning, and gastrointestinal issues. Pretty much anything but cancer. I ended up being sent for a CT scan (November 22nd) that showed a 10cm tumour close to my uterus, a legion on my left ovary, some ascites, peritoneal nodules and a few other pretty crappy things. The ‘impression’ from the CT scan said: ‘ Likely right ovarian malignancy with progression to peritoneal disease.’   Whoah! The doctor called me 3 days later and let me know that the CT showed I likely had cancer. Talk about a punch to the gut! Besides the excruciating pain that I  have been experiencing, I consider myself pretty healthy. I have a young family, and cancer has never crossed our minds. Now it’s on all our minds.

Bloodwork. I had some Tumour markers done and the results seem pretty high. My CA 125 was 3440 and my CA 19 9 was 189. Internet searches aren’t telling me much. Never even knew about CA blood tests a few weeks ago. 

On Dec.11th I went to the hospital to get some of that fluid removed from my belly, that would have also served as a biopsy, but the fluid was surprisingly so low that that the procedure didn’t happen. Silver linings and all that good stuff. Also mildly disappointed I didn’t leave a few pounds down lol. 

So now I’m left waiting for a call from the cancer agency and it’s been weeks. I’m coming up on a month now that I’m told a referral was made. The waiting sucks. I’m having pain. Am I looking at waiting for many more weeks? Another month? Feeling a little lost. 
Trillium Trillium

Re: The waiting game? Some test results.

Posted by Trillium on Dec 22, 2020 11:31 am

Hello Makgirl‍ 

You have come to the right place for support. I’d like to introduce you to JustJan‍  and Elsie13‍  who can further guide you. Do you have a family doctor? They should be able to ensure you are being seen. I would call the cancer clinic and ask about the referral to be sure it has not got lost in the shuffle. I would want to been seen right away. You have been waiting too long already. At the very least your pain should be taken care of by the family doctor.

Hugs Makgirl...you are not alone with this.
ashcon ashcon

Re: The waiting game? Some test results.

Posted by ashcon on Dec 22, 2020 12:02 pm

Makgirl‍ 
I agree with Trillium‍ - it's time for you to rattle some cages to see what's happening with your referral.  Knowledge is power, and it sounds like your equipping yourself to be very powerful in your self advocacy.  Which is needed sometimes. Tip: be clear, persistent and well-informed on what you are seeking.

Have you checked out the BC Cancer Agency website, or how to contact them to see where your referral is sitting?
  
I'm sure that JustJan and Elsie13 will chime in, but you can also always call the Cancer Information Helpline. They were very helpful to me when I was blindsided with my diagnosis of a difficult to treat type of breast cancer. They may be able to give you some ideas on what to expect regarding standard timelines for when treatment should start once diagnosis is confirmed (as it seems to have been in your case).

Also..... Treatments for Ovarian Cancer

I'm glad you got things checked out, and hope you get some direction and answers soon on what your next steps are.
---- "Nothing ever becomes real till it is experienced." ----
Elsie13 Elsie13

Re: The waiting game? Some test results.

Posted by Elsie13 on Dec 22, 2020 6:06 pm

Hi Makgirl‍  So sorry you are going through all this with the pain, the likely 'ovarian malignancy' and waiting for a call.  I'm glad you have connected with ashcon‍ and Trillium‍ .  I totally agree that you should try phoning your family doctor and /or the cancer clinic. Tell them about the on-going intense pain and presumed malignancy, I would say. 
 I didn't have too much pain, leading up to my hysterectomy and cancer diagnosis. I had alternating constipation and diarrhea and felt very bloated.  I was eating less and less. 
If you like, have a look around the ovarian cancer discussions: https://cancerconnection.ca/discussions/viewcategory/72 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!
Makgirl Makgirl

Re: The waiting game? Some test results.

Posted by Makgirl on Dec 22, 2020 7:19 pm

Thank you all for the replies and information, it is very much appreciated 🙏 
I do not have a family doctor, but do have a doctor who I can connect with. I did get a call from his receptionist yesterday who said I’m being triaged and should hear from someone soon. 

I will call the cancer clinic and see if I can find out where I’m at on the list. It seems like such a bomb to drop (cancer) and then you don’t hear anything for weeks. 
JustJan JustJan

Re: The waiting game? Some test results.

Posted by JustJan on Dec 22, 2020 11:11 pm

Makgirl‍, I am so sorry to hear about what you are going through and I hope you can find support here.

I agree with the others that it’s time to rattle some cages although it sounds like you have heard something but nothing definitive. I would call again before Christmas if you still haven’t heard anything. I was going through breast cancer treatment when my ovarian cancer was discovered. I was not having any symptoms and it was caught on a baseline CT scan. I was referred and seen within a few days. A month seems like a very long time with still no appointment having been scheduled. I’m sure Covid isn’t helping the situation. 

You do need to be an advocate for yourself. Be polite but persistent. If push comes to shove I would show up in emerg with stating increased pain and discomfort and a possible malignancy. 

I so feel for you and this must be causing you so much anxiety. Please feel free to reach out if you have any specific
questions.
 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers
Makgirl Makgirl

Re: The waiting game? Some test results.

Posted by Makgirl on Dec 24, 2020 11:32 am

UPDATE. I have an appointment at the cancer agency in Vancouver on December 29th! Yay! 
JustJan JustJan

Re: The waiting game? Some test results.

Posted by JustJan on Dec 24, 2020 2:10 pm

Makgirl‍ that is amazing news!  Wishing you all the best!
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers
Trillium Trillium

Re: The waiting game? Some test results.

Posted by Trillium on Dec 25, 2020 3:30 pm

Makgirl‍ Yay! I’m so relieved for you too. Please keep us updated. 

Peace and love to you this Christmas Day ooxx
Trilium
Makgirl Makgirl

Re: The waiting game? Some test results.

Posted by Makgirl on Dec 29, 2020 11:38 pm

JustJan‍ Trillium‍ Thank you 🙏 I hope you both had a wonderful Christmas. 

I had my appointment today and didn’t get many answers. They (the fellow doctor and main doctor) won’t confirm any cancer Until I have had surgery. They said that I am pretty young to potentially have ovarian cancer and although it isn’t impossible, it would be rather rare?  They also said most tumours are pretty symmetrical in shape and that mine is very jagged and odd shaped and that that concerns them. That it has potential to be a rare cancer or nothing at all? Weird. 

My intense pain seemed to be dismissed. Wild, even though I told them it’s a 10 out of 10 when it hits. Also my high CA 125 was dismissed- what is the point of these tests if not useful before surgery? 

I had some more blood tests and a chest X-ray. I was told to expect a call for surgery within the next 4 weeks. 

Hurry up and wait I guess. The good news is that my pain is very low. 

 
Kims1961 Kims1961

Re: The waiting game? Some test results.

Posted by Kims1961 on Dec 30, 2020 12:06 am

Makgirl‍  Ah....the hurry up and wait game...a game, i did not like playing.

I’m glad you had your appt., but like many appts., we don’t always get a clear, definitive answer.  Even the response - you should get a call within the next 4 weeks - can seem like eternity!

I’m glad your pain is low.You may do this already, but i found it helped to mark on a calendar my pain level each day.  I would score the day out of 10.  That way i had more info. To provide my doctor.  I even brought in my calendar to show them the pattern or severity of pain at times.  It always seemed the day of an appt., my symptoms weren’t as bad as when i didn’t have an appt....go figure.

Do you have any hobbies or strategies that help during the “wait game”?

Sending positive energies your way.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom
JustJan JustJan

Re: The waiting game? Some test results.

Posted by JustJan on Dec 30, 2020 9:04 am

Makgirl‍ I am glad you had your appointment but I am sorry you didn’t get any firm answers. Unfortunately, they can suspect cancer but until they do pathology on your mass, a diagnosis cannot be made.  The CA-125 can be a predictor of cancer but can also mean many other non-cancer things. That is why the doctors are wary about using it as a diagnostic tool. Some women who have had ovarian cancer never have an elevated CA125 and for others it is a good predictor. There are no good diagnostic tools for ovarian cancer at the present time. A lot of research is going on to hopefully improve this. 

It is great you will be having surgery in the relative near future though 4 weeks may feel like an eternity.  

Perhaps while you are waiting for surgery you may want to make some meals for the freezer that you can enjoy during your recovery. Get some good books organized and some quiet activities you can do. Also be prepared to have someone do your laundry, housework etc in case you have limits on lifting after your surgery. I wasn’t allowed to lift more than 10 lbs for six weeks. No laundry and no vacuuming for 6 weeks even though I felt well enough to do it. 

Also be prepared for a wait on getting results after surgery. It may take three weeks or more to get the pathology results from your surgery.

Again, please keep us posted. We are here to help support you. 
 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

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