Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?

OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis ([email protected]).
Hi everyone, there is currently a glitch in the system that is causing the notifications you'd normally receive to your personal email inbox are not being sent. The platform provider is working on this and hopes to have this fixed as soon as possible. In the meantime, please be sure to sign into OVdialogue often so that you don't miss any conversations, personal messages, or new posts. Thank you for your understanding.

In the Dark

I was diagnosed with metastatic ovarian cancer in September 2022, during a visit to emergency department.  I was being treated for IBSC for over 2 years. I was referred to LRCP and had surgery booked for October 3 2022. Unfortunately, nothing was able to be surgically removed.  I started chemo 4 days later.  Paclitaxel and Carboplatin and finished 6 cycles, February 13/23, with the last infusion, Avastin was added. Since then I have had 2 more Avastin infusions, scheduled every 3 weeks. I was hospitalized in December 2022, with 3 bacteria blood infections, and 2 blood clots in my right lung. 2 days later the doctors decided that I did not in fact have a blood infection, but the blood cultures were contaminated. A few weeks later, at an appt with an Internist, for follow up regarding the blood clots, he revealed that I have a tumour in that same lung. I was not told that prior to seeing him!  It was confirmed by my oncologist, with the explanation that i was not told this because it was not as big of a concern as the tumour in my abdomen. Hmmmmm! I was again hospitalized in Feb 2023 with febrile neutropenia. The Infectious Disease Specialist and the Internist, both suggested to my oncologist to have my PICC line removed. My oncologist did not agree, and would not have my PICC taken out. Then in March I was diagnosed with another blood infection, this one was definitely real, and my PICC line was removed by the Infectious Disease MD . I’m not thrilled with my oncologist, but I do believe he is very knowledgeable and I am receiving the appropriate treatment.  He never tells me what my routine bloodwork results are, he has not followed thru with ordering an additional CT scan, so I have no real idea if the treatment was successful, or if the cancer has spread to other areas. Last week, while at the cancer clinic for my infusion, I was given a print out of my most recent blood work results, my CA 125, was 12.  The only other results I did get, by my request, showed that my initial CA125 was Hi at 69, and 4 weeks later it was 26. I’m not sure what these values are all about. Luckily my GP is very willing to step in and will order a more inclusive scan, from head to pelvis, in June.  It has been suggested, that I get a new oncologist, but I don’t believe that is as easy as it sounds. I will welcome any thoughts or suggestions from anyone in this supportive community.  Thanks for listening 

Comments

  • @MaryCatherine
      OMG girl.....you have been through a lot. It must have been quite difficult at the time though.  By reading your post, it sounds like that thus far you have handled it well. 
      To my knowledge, you may request copies of your health record(s) at any time. I obtain most of my radiology, ultrasound and X-Ray report through a system the hospital in Ontario has called myPocketHealth.  My Oncologist has stated that most hospitals are moving to this platform and they are starting in Hamilton (if I remember correctly) in rolling out this month being able to see bloodwork and possibly doctor notes on there as well. That has not come to my area yet.  When I do go for a CT scan, once the report is completed, I receive an email notice that it is ready and then I can log on and look at my results.  I, personally like this, as I do know what I am reading for one and it gives me time to process and come up with any questions I may have when I go to my follow up appt.  I am not sure what area you are in and if there is something similar available to you.  Juravinski used to have one called myChart and not sure if they still do or if they are making a switch.  Yes, I do pay an annual fee for it ($50) but it is worth every cent in my own opinion.  If this is becoming more widely used perhaps the fee will either decrease or there may be no fee in the future.
      As far as CA 125 levels, I do know from being on this forum esp with HGSC that the values vary greatly from lady to lady.  Some are in the thousands and some range in the area you are hovering now.  It seems like this is not a marker to get overly concerned with unless you consistently are seeing a trending upwards or downwards from what I understand. It is my understanding that the baseline is anything over 35 or 36. I hope that helps to field your question there.
      I am not positive but the other HGSC gals will answer regarding CT scans and relativity to recurrence, monitoring etc. In my case (LGSC), we monitor with monthly CA 125 results (as I am in a recurrence) and we perform CT scans every 3 months unless there is something unusual that we need to check for earlier.  Mine are usually CAP (chest, abdomen and pelvis) when performed. 
      As far as asking for another Oncologist, is it a possibility or are they very limited in your area. At the hospital in my area there are 3 or 4 of them that rotate and most individuals get who they get.  I, personally, work only with one of them by my request and was accepted.  If it is a possibility, why not go on a list or get a referral to another one? What did your GP say about it or did you discuss that with them?  
      Please remember that this is YOUR body and you are allowed to ask questions and receive answers, ask about the validity of a treatment and discuss pros and cons and in the end you DO have final say.  They can strongly advise one way or another but you still get to have a choice.  
      Bloodwork is monitored for various reasons for different individuals.  Definitely in your case they were watching the immune system while you were on chemo as it is known to decline while on chemo.  For myself, we do bloodowork to monitor my kidney and liver function (currently I have a left kidney function of 76% and right 24%) and my CA 125 levels keep climbing.  There are no more options left in the arsenal for LGSC and my case.  If you would like to know what they are monitoring and why, ask. There is no harm in it.  I know some ladies who will make sure all their questions are answered before leaving their appt.  
      I hope some of this helps you and perhaps some of the HGSC gals will throw in their experiences and knowledge to help you along the way.
  • I live in the London area, and  I have bloodwork done every 3 weeks, a few days before my next infusion.  My oncologist always seems too busy, but he will on occasion dedicate a longer appt time, for any concerns I might have, but he usually steers the conversation.  I’ve learned not to voice concerns or volunteer any info on side effect I might be experiencing.  I know this sounds unusual, and I have talked to my GP about conversations I have had with him. My husband always attends my appts with my onc, so there is no confusion to what transpired during these visits.  I am a retired nurse, and I know when to seek medical attention when I need it.  I believe I am receiving the appropriate treatments, and I have a very supportive GP, so I see my oncologist as an important person on my medical team, but not my sole resource.  I guess I see his behaviour as very odd, but I don’t like to ‘rock the boat’ with him.  Except for my surgery, whenever I have been hospitalized I was admitted to my own community hospital under the care of specialist in my own community.  I have an infectious Disease specialist for my recent neutropenia, and an Internist for the blood clots in my lungs. These guys including my GP keep my oncologist updated, so I’m not sure if he feels a bit ‘put out’ with their involvement. I just don’t know for sure. I have been seeing him routinely every 3 weeks since the end of September, but not all appts have been ‘unusual’.  I’ve read thru a lot of the discussions her on this forum, and the Canadian Cancer forum, and have learned a lot.  I feel much less alone and more understood thru accessing these resources, making them immensely valuable. Thank you again