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Hello, this is my first post and question.  My name is Julie I am 55 who was diagnosed with stage 2 clear cell carcinoma. I finished my last infusion of taxol and carboplatin on Nov 12th.  I was told that I will be having 3 month checkups for 3 years. I had an appointment on Dec 19th after a CT scan that everything looks good. They made an appointment for me for April 10th.  A little under 4 months but ok.  I just got a call that it had to be rescheduled and it is now May 1st.  This will make it 4 3 weeks since my last checkup.  Is this normal? Acceptable?

Hello @Fredbarnie and welcome to OVdialogue. You've joined a forum with an amazing, strong group of Teal Sisters who collectively have a lot of experience related to Ovarian Cancer. I will start by saying I'm sorry for your diagnosis however it sounds like they may have caught your cancer at an earlier stage which is great. You made it through the chemotherapy which can be a challenging step for many so congratulations on that. Also, very good news that your December CT scan was good!!!

With regard to your checkups, it's an interesting question as from my observation, there doesn't tend to be a 'normal' timeframe of follow-up care. My sense is that it is often driven by each of our individual circumstances. It's interesting that they said yours would be "3 month checkups for 3 years". I've often seen a medical team start with 2 to 3 month check-ups and if things are progressing well, they might extend that timeframe between checkups by a month or two with the goal of getting to 6 months of more between check-ups. 

Are you on any maintenance drugs? Often if you are that will bring you back in sooner as they monitor your bloodwork fairly closely. For instance, I'm 15 months into taking Lynparza (Olaparib) and they see me every 2 months at Princess Margaret in T.O. for bloodwork monitoring. If not, are you feeling okay otherwise? Any symptoms or concerns that would drive you back sooner? 

Ultimately, if you feel there is a need to get back in to see someone sooner then self advocate. You can always call and express your concern that the timeframe if now longer than you had been told and that is causing you some concern. 

I'm sure some of the other Teal Sisters will weigh in with their wisdom too.

#Supportandencouragement

Imagine my shock when it came to my one year checkup and I was redirected to a nurse practitioner. I guess my oncologist is tired of telling me I have an 80% chance of my cancer returning  imminently . I suppose oncologists are over educated if they can be replaced so easily and since my cancer failed to return on their schedule I guess they are no longer interested in me. This time after chemotherapy ends feels like stepping off a cliff, falling so rapidly that life is no longer enjoyable  and then constantly waiting to land hard when the cancer returns as everyone including my son, an anaethetist, seems to expect. Just enjoy what life is left to you they say as they are whispering steadily It will return soon. I don't seem to have the knack of it especially when they say clear cell cancer is very aggressive and treatment resistant. I begin to wonder if they know what they are talking about when I read in my genetic testing report such gems as: She was diagnosed in 2020…wrong it was 2024. She has also had breast cancer…wrong. They found a lump and thought it was breast cancer but upon ultrasound, mammogram and biopsy it was a benign lump resulting from a seat belt injury. There was another mistake which I have forgotten now but I did phone them and they were supposedly shocked and said they would send an updated correct report. Well a year later I am still waiting. They brushed away my concerns saying no one reads these reports anyway. I guess mistakes don't matter and who knows how many more are lurking in my history. And I keep hearing We have poured so much more money into our cancer system, and things are so much better. Really? I think everyone tries hard but they are all working short staffed and they are tired out so mistakes happen but when they happen to an individual it makes a stressful time even more stressful.

Hello @WestWind. I believe this may be your first post and so I welcome you to OVdialogue. My heart broke a little when I read your note. I'm so sorry for the challenges you have faced and what seems like a lack of positive support. I can definitely relate to your comment that when a mistake happens and it's related directly to you, it does make things more stressful, especially when no-one seems to take it as serious or importantly as you do. It sounds like you may have recently finished chemotherapy? My apologies if I misinterpreted that in your post. I'm also quite surprised that an oncologist would say there's an "80% chance of your cancer returning imminently". While I believe our medical team needs to be honest with us relative to the facts as it relates to recurrence rates of this cancer, it just seems like an odd statement. Especially when adding the word "imminently".  I would want to know exactly what led him/her to make such a specific statement of claim about your personal situation.

Not that this makes any excuse for your situation however, I do not see my oncologist every time I go to the cancer centre (Princess Margaret in T.O.). I typically am seen by a nurse practitioner OR one of the residents who work on my oncologists team. I tend to only see my oncologist every 2nd or 3rd visit and those are months apart. I like to believe (perhaps naively) that if there was something of concern, then they'd ensure I saw my oncologist. Also, I tend to only get 5 - 8 minutes with my oncologist so it's not a huge amount of time. If you feel you would like to see your oncologist, go back and make your request. Many of the Teal Sisters here have learned that self advocacy is sometimes the only way to get seen and heard. Also ask for more information on why he/she made their statement on your recurrence. I'd want him/her to provide some qualifying information to help me better understand. I'd also like to understand, "if" there's a recurrence, what would be the plan of attack? I'm known for saying, "don't bring me problems, bring me solutions". Feel free to use that with your oncologist.

I'm hoping other Teal Sisters will provide their perspectives and insight as well. I hope we can be the supportive group that you may need. Thank you for sharing. Sending you strength and positivity. 🩵

P.S. As well, if it's of any value, there is a workshop coming up if it's of interest. It's by the Look Good, Feel Better foundation. In the session they will provide expert tips on how to manage and cope with cancer-related anxiety, including fear of recurrence, scan-related stress, and lingering concerns about your health and future. I've added the link below.

https://lgfb.ca/workshops-top-page/fear-and-worry/

#Supportandencouragement

Thanks for your response. I have become more than slightly exasperated with him telling me both you have an 80% chance of re-occurrence and your CA 125 is low but that doesn't mean much because it wasn't that high upon diagnosis. It was definitely abnormal no matter what he seems to feel. I keep copies of all my reports! My son is no more encouraging. In December of 2024 just after I had my last chemo my son said to me I don't know why they are doing all this work on you as you are strictly palliative care. Why did they do debulking surgery. You are just palliative care. I can tell from your pathology reports that you are just palliative care. I wanted to ask him if he was in a hurry for me to die but bit my tongue. His older brother lives with me because he is on disability and that is only $1400 per month when rent is $1000 per month and there is a two year waiting list for low income rental units. He was told he would have to wait until I had died and my house sold before he could be put on a waiting list.So I guess he becomes homeless for two years or he lives with his brother and family until he can find a low rent unit. I pointed that out to my son the doctor who seems anxious to get rid of me. What with my gloomy oncologist and my son who wants me to hurry up and die the beginning of 2025 was off to a rather depressing start.

@WestWind I'm so sorry that you have so much to deal with outside of managing your diagnosis. Do you have anyone in your group of friends or other family that you can connect with? Has your oncologist and/or anyone on your medical team ever suggested a therapist? I was given the option of connecting with a therapist through my medical team at PMH in T.O. She has been extremely helpful to me. We meet virtually. If you haven't explored that option, perhaps speak to your oncologist and/or their team about that.

Additionally, if you weren't aware, Ovarian Cancer Canada (OCC) has a peer support service. I've put the link below. You'll speak over the phone one-on-one with someone who has been diagnosed with ovarian cancer - someone who truly gets what you're going through. In every call you'll gain emotional support, practical advice, and a sense of comfort knowing you're not alone. Whether you're newly diagnosed or navigating ongoing treatment, it's a  compassionate, confidential space to be heard and supported by someone who understands.

https://ovariancanada.org/resources/peer-support-programs

I hope one of these options may be something you can explore that can help provide some additional support.

#Supportandencouragement

Thanks for your response. I am on lists for a therapist but the waiting time is long. I guess I could find a private therapist but I really would rather deal with some who has experience with cancer patients, especially ovarian. My mood goes up and down like a yoyoso some days are good and some are lousy. Today is an okay day.

@WestWind ... understood. We all have those days. Please give yourself grace. You've been through a lot and we all know the journey has it's challenges. We are here for you. 🩵

#Supportandencouragement

Hi @brendalee ... I was in Human Resources for 30+ years and understanding, interpreting and utilizing employment laws, labour laws etc. was a critical component of the role. Your comment made me laugh...I guess you can't take the career out of the retiree 😂

Yes I have had mistakes on some of my reports as well as I read them over again and I call to have them corrected.  They had my appointment to reoccur every 3 weeks on a Monday and I kept telling them that it was suppose to be on Tuesdays.  It was not corrected until the middle of my infusions.

It is scary with this type of cancer as the oncologist did not think I had cancer and was surprised when she opened me up.

Afterwards it is like where is my life now.  Still try to navigate as you get better from the last treatment.  Good news is I work has been amazing and I am gradually getting back to work. I am trying to rebuild a life again. Keep busy and get healthy again.  It is the things out of my control that stress me like my 3 month checkups.

Thank you for sharing.

@Fredbarnie I'm glad you stayed on them to correct your appointments. I know it's frustrating. Self advocacy is one thing we can control (even though it's annoying when we have to do sometimes, what really should be someone else's job). 

It's so great to hear how supportive work has been. I'm glad to hear you are focusing on the positives and the things you can control. The Teal Sisters here know how hard that is. A cancer diagnosis and all that follows is A LOT.  I know that many of us try not to let the cancer define us. For some, it takes a bit of time to reach that state. For others, it happens quickly. What we do understand is that the cancer diagnosis 'reshaped' us physically and mentally however, we were something before that. We will never be 100% the same however, every experience we have each day changes us. We are always evolving. We are strong. We are determined. We are fighters. You are too!!!! 🩵 

#Supportandencouragement

@LeslieA. I'll be on the workshop too!

As for stats, I believe for every statistic there is an equally compelling counter statistic. Plus statistics are driven by facts and we are here to produce new data that WILL counter what exists.  

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Hello,

Thank you for taking your time and replying to my questions and thank you for your encouragement.

I am not on any maintenance drugs. And no symptoms.  It is just my first check in and to me when your oncologist says she wants to see you back at 3 months it is a benchmark.  Mentally it is hard that I have not control of my body and my appointments.  

I have a call with her hopefully Monday and I will let her know my concerns.  It is not the oncologist who makes the decisions but the nurses.  

Thank you, 

Julie

@Fredbarnie I hope the call goes well today (Monday). Hopefully your oncologist will hear what you are saying and provide some perspective on appointment timing. Please keep us posted.

#Supportandencouragement

Hi @Fredbarnie (Julie),

This is my first post but I have been avidly following discussions every day on OV Dialogue for the last few months - a big thank you to @Alwayslearning and the other amazing women that share so much valuable information and emotional support via this forum. Even though I haven't interacted before today, I have felt much less alone and crazy knowing you are out there! 🥰

I too found out I had CCOC Stage 1C last year at the age of 55 (I'm 56 now) and went through the same surgery and chemo treatment. Finished last August and had my follow up CT scan and appointment in October. I was told that the plan for follow up is every 4 months for 2 years, and then likely changing to every 6 months. I've learned that there are no maintenance drugs for CCOC, that the CA-125 is not a good/reliable indicator for CCOC and that CT scans will be done based on symptoms. My follow up appointment is booked for Feb 12, no bloodwork or CT scan at this point, but a physical examination by my gyne onc and discussion on symptoms to determine whether a CT scan is necessary. I'm being treated at Sunnybrook's Odette Cancer Centre (in Toronto) and what's incredibly helpful is there is a nursing line that I can contact if I have questions about my symptoms i.e. if I have sudden and/or severe symptoms, I don't have to wait until my next appointment, and can get clinical guidance immediately.

So, in response to your question, and in my opinion, I think it's ok if your follow up appointments are a bit delayed as long as you are able to speak to someone quickly if you are worried about symptoms and unsure what to do. Do you have a way of doing that between now and May 1?

I'm also hoping that a few others diagnosed with CCOC will chime in with their perspectives.

Hello @TFA and welcome to OVdialogue. I appreciate the note of thanks and share that with all my Teal Sisters who lend their experiences and counsel on this site.

Thank you for sharing your diagnosis and experience. I know how helpful it is to hear from others with a 'similar' diagnosis considering the types of ovarian cancer that exist. I am glad that they found your cancer at an early stage and hope that your Feb 12th appointment goes well. Thank you as well for mentioning the "nursing line". We have that as well at Princess Margaret (PMH). It may be the exact same service. It has been very helpful, particularly when I was going through chemotherapy. Knowing that someone was always there was a godsend. You also educated me on the fact that the CA-125 isn't a good/reliable indicator for CCOC. I was not aware of that. As for CT scans, your gyne onc is aligned by the sounds of it with the approach my gyne onc takes. She was very clear at the start of our relationship that she truly only tends to request them if there are symptoms and/or signs of something worth exploring from my bloodwork (including the CA-125). She wavered once when I was having very bad abdominal pain and was clearly stressed about it. In that case, even though my bloodwork was fine she ordered the CT. It showed to me that she was listening to my concerns. The CT came back clear.

If, following your appointment you want to post an update we'd love to hear from you. I respect however that active posting isn't always everyone's preferred approach. Regardless, I'm sending positivity for this week's appointment (fyi it's the same day as mine at PMH with my oncologist for my 'check-up'). 🩵

#Supportandencouragement

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