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]).
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]).
Handling Wait and See After Treatment
I have hi-grade serous diagnosed in Jan 2021. Four chemo, then ovaries, fallopian, uterus, omentum and appendix removed, followed by two more chemo. CAT scan after that showed two nodules in abdominal lymph system, but everything else was gone. Oncologist said the lymph nodules might not be the cancer. Started maintenance dose with niriparib, but platelets and white blood cells dropped so low that transfusions were required and maintenance drug discontinued.
Now in wait & see, surveillance, hurry up and wait - whatever you want to call it. I I'm feeling quite anxious and finding the lack of contact with the oncologist very difficult....I don't want to pester them, but I would like to better understand if the lymph system is cancer, how we would determine this, and what the next steps are. They have said we will talk in late January, but end Oct to end January seems an eternity. Am I "no evidence of disease" or not?
Hard to understand for me and hard to explain to friends and family, too, who want to help.
Now in wait & see, surveillance, hurry up and wait - whatever you want to call it. I I'm feeling quite anxious and finding the lack of contact with the oncologist very difficult....I don't want to pester them, but I would like to better understand if the lymph system is cancer, how we would determine this, and what the next steps are. They have said we will talk in late January, but end Oct to end January seems an eternity. Am I "no evidence of disease" or not?
Hard to understand for me and hard to explain to friends and family, too, who want to help.
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Cheryllunenburg - I don't have any advice to offer you, but I just wanted to say I feel your pain. Uncertainty is one of the hardest things to deal with after treatment ends, and you've got it big time with this situation.
I think we all have that "I don't want to pester them" attitude, but fear of pestering should be our last concern. So I say, pester away, you shouldn't be left without some answers to your questions, even if it's just to indicate why it's okay to wait until end January and what they'll know then that they don't know now.
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Great answer @jobo
@Cheryllunenburg surveys conducted with OVC survivors show consistently that fear of recurrence and concerns about the unknown are the top drivers of anxiety. You are not alone in how you feel, especially given the nebulous diagnosis of the lymph nodes. BTW, the nodes could well be totally unrelated to the cancer. It's quite common. But I know that won't put your mind at ease until someone tells you for certain.
As jobo said, don't shrink from rattling some chains with your cancer care team. Let them know you need to better understand the status of those nodes and lack of information is causing you significant anxiety. Pestering is not in our vocabulary. You have the right to request the information you need.
Hopefully others will weigh in. I have no lymph node involvement myself buy many of our Teal Sisters in this community have mentioned having them following completion of treatment. In the meantime, feel free to join our weekly live online chat every Thursday at 1pm ET.. It's a great way to ask questions and get immediate feedback. That said, try searching key words like " lymph nodes' in the search bar at the top right of your home screen. It will pull up any archived conversations on the subject that you might find helpful, even if only to help arm you with questions for your oncologist.
Good luck with getting some satisfaction, especially before the holidays. I know this time of year just exacerbates any anxiety we might be feeling. I know it does for me. Keep us posted and reach out whenever we can be of help.
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@Cheryllunenburg - like you, I had 2 lymph nodes show up on a CT scan as enlarged. Many lymph nodes are not in a place where they can easily be biopsied to confirm whether or not they have ovc. In those cases. The Dr's seems to take a wait and observe approach. Lymph nodes can swell simply because they are doing their job. Do you know from your scan how large they are? I understand that anything up to 1 cm is ok and doesn't warrant action beyond observation. If they get to be greater than 2 cms, that is when they start to be concerned. In my case, my lymph nodes would be 1cm on a scan and then when I went for a biopsy, the lymph node had disappeared, there was not enough to biopsy. It can be tricky for your oncologist to know with certainty that the lymph node is cancerous.
You are entitled to a full explanation from your doctor of the approach they are going to take with your lymph nodes. I would pursue a direct answer to that question.1
