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Hello everyone, I'm so happy for finally finding a group where I can voice my concerns and have people that can listed and understand what I'm going through. I was diagnosed with Endometrial Cancer on Feb 2025, had a full hysterectomy on March and then started Radiation Therapy around May. My experience with my oncologist has not been the best and I have not cleared understanding of my prognosis and the Dr. Is always answering with monosyllables. After 2 months of finishing the radiation treatment I had a recurrence and metastasis to the rectus abdominal and the omentum. I understand the molecular profile is P53. Then, I went for 6 rounds of chemo one every 3 weeks. The Dr. Was trying to get my on a trial for women with the specific. P53 molecular classification, but due to my liver enzymes that are still quite high, I was not able to get into the study. My concern is that according to the oncologist the next step will be monitoring every 3 months, which concerns me as according to the latest CT scan I have 3 tumor that while they were decreasing in size are still there in the abdomen I can feel them and also the pain that had initially made me aware of the recurrence came back. Has anybody else experienced not having any treatment despite still having some residual cancer cells 

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@andyro sorry you are here.  Is this ct scan after you finished the 6 rounds of chemo?  Was there any option of having another surgery if the tumors are shrinking with treatment?  Are you monitoring your ca125?  I'm not sure where you are being treated but you can always ask for a second opinion.  I believe most ovarian cancers have the p53 mutation.  I hope some other sisters will be able to help you.  

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Hi @andyro and I'm so glad you found us!! I know of one other member of this group @MissERP who has posted relative to her experiences following her Endometrial Cancer diagnosis. I've tagged her in the event she may have some insight to share with you.

I'm sorry for the challenges you've had with your oncologist. One of the things we talk about often on this forum is self advocacy. You are well within your rights to seek a second opinion as @Meinvan mentioned. I'm not sure of your location in Canada however, if there is an opportunity to meet with another oncologist just to see if they are a better "fit" relative to your needs, perhaps that too is an option?

Regardless, if you remain with your current oncologist go back with all of your questions and concerns. Try to get clarity from him/her on the plan they have outlined and express your concerns relative to your needs and wants. You mentioned you had pain so that would be something else to speak to them about to see if there is anything they can do to help you with pain management. Ultimately, make yourself heard. As we all know this is our journey and our lives and we should seek the support we need.

Please keep us informed on your progress. Am thinking of you.

#Treatmentandsideeffects #Supportandencouragement

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Hi @andyro @Alwayslearning,

I am sorry to hear you are going through this. I can sympathize about your oncologist not being the easiest to get answers from. 

Quick background on me/what I'm doing, I am 27 years old, diagnosed Grade 1 Endometrial cancer at the end of October 2025. I was presented with two options, 1. hysterectomy and removal of ovaries, or 2. fertility sparring/hormone treatment. I decided to try the hormone therapy route (so no surgery at this point in time). 

My oncologist is at London Health Sciences Centre, Victoria Hospital. I find that it is hard to ask him more than one or two questions at an appointment, and my follow up appointments have seemed rushed. I mentioned this in the April Teal Tea for young women, and @mfallis_OCC I believe, suggested connecting with a social worker at the hospital and maybe even seeing if they could attend an appointment to help advocate, etc. Last week I called down to LHSC and finally got connected with the cancer centre social worker that works with gyne oncology patients. I have an intake with her later this week. 

My only other advice, aside from try your best to advocate for yourself (its not easy, and can feel uncomfortable), is if any pain you are having isn't being addressed and is impacting you that much, don't be afraid to walk into the emergency department. That's what I ended up doing twice in February because I was having a lot of issues with medication side effects and pelvic pain and couldn't see my oncologist until late March. 

I hope you can get the answers and support you need, and remember you deserve to have your questions and concerns addressed just as much as the next person (this is something I've got to keep telling myself). Take care 🩷

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Thank you @MissERP for sharing and for being such a strong self advocate. Good for you!!!!!!! Also greatly appreciate your perspective on self advocacy. It's probably one of the most important things we can all do. I hope you are doing better these days.

#Supportandencouragement

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Thanks @Alwayslearning

I have been doing better mentally and physically. I think seeing my oncologist in March helped, then I saw him in April for biopsy results from the March appointment. We've increased my one medication, so I have had some side effects bubble back up, but hopefully my body adjusts a lot quicker this time, lol. I see him in two weeks again to make sure I am doing okay on my new dose, then we will see where we go from there. Fingers crossed things keep going well. I am still dealing with pelvic pain and waiting for an appointment with this new gyno, but I am expecting her office to maybe call sometime this month. 

There is a song I keep hearing snippets of on Instagram that says something along the lines of "I'm loving life again," and I would say that is very true for me right now 😊

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Yes stay positive always…. The mind is a powerful tool 

sending positive energy your way 🩵🙏

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Angie
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Hello everyone,

Thank you for your support. I’ve found a lot of hope and encouragement in discussing my concerns with a community that truly understands my situation.Thanks for all the helpful tips.

I’ll see my family doctor in early June and request a referral to the PM for a second opinion and to address my pain.

I’m in Toronto and have been treated at Sunnybrook Hospital. I appreciate the quick treatment plan, but I’ve had difficulty connecting with my oncologist, and I’m confused about my prognosis.

@andyro we are so glad you found us!!! Hopefully your family doctor can help you with the referral. When I was first diagnosed, my GP sent my referral to two places (Juravinski in Hamilton and PMH). It was PMH who called first which led me there. It's a big team at PMH (which makes me happy and sad at the same time). Hopefully you will get the medical support and clarity you need, in the near future. Keep on advocating! Thinking of you!

#Treatmentandsideeffects #Supportandencouragement

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@MissERP I'm so glad to hear your positive progress. It certainly is a physical and mental game and I'm glad you are focused on both. It sounds like you have a good plan in place and I'm glad your oncologist is continuing to monitor your dosage. Hopefully your appointment with the social worker will help as well. I have one via Princess Margaret and I will tell you she has been very effective at helping me when I've had "roadblocks" with some parts of my care particularly the Sexual Health Clinic at PMH (not my oncologist or her team...they've always been very helpful). It pays to have someone who can help you navigate and also if they have the ability, advocate. 

Sorry to hear about the pelvic pain. It's always so stressful as your mind plays tricks on you when you have any abdominal based pain however, sometimes it's related to surgery, or healing or both. Hoping you get into the new gyno soon 🤞. With my recurring abdominal pain I'm sought out a pelvic physio therapist. I'm seeing her in a few weeks and will be talking to her about "visceral manipulation" (basically massaging the abdomen). I'm hoping she can help me with some manipulation and provide me some stretches/exercises to help with my chronic pain. As long as this isn't a cancer recurrence, I'll focus on what it might be and how I can help. What a journey we are all on!!! Way too many roadblocks, delays and stations we have to endure.

I think the song you are talking about is by Ella Langley, "Loving Life Again". What a great anthem. Thanks for that. I just listened to it. Thank goodness for YouTube ☺️. I also love her song "Choosin' Texas"🤠. 

I hope you continue to progress well and get some answers relative to your pelvic pain. I know from experience how much it can weigh you down however you are doing a great job rising about it!! Sending positive energy and vibes your way 😎

#Supportandencouragement

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@Alwayslearning Yes, that sounds like the right song I was thinking of.

I have been seeing a pelvic floor physio for a little while now (about once a month, she is a busy lady being the only pelvic physio in our county). That has helped a bit. My nurse practitioner wants me to do a urine analysis as well, since I have always had blood in my urine (but that was most likely due to the issues I was having before my diagnosis, etc.). So I might have to go see a urologist again (saw one briefly in December/March about an enlarger urterer on my CT scan in November). I don't really want to have to see one again, but I'm going to ask to see the same urologist at LHSC again instead of the one in Stratford if I have to (at least I know what the urologist in London is like, he was okay to deal with briefly, but I already have mixed feelings on the one in Stratford and I might not even need to see him! Lol, talk about worrying about something that hasn't happened yet!). 

I hope you find some relief with the pelvic floor physio, I think they really do bridge the gap and provide a lot of help for pelvic issues. Take care 🩷

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@MissERP I learned from a friend of mine in the healthcare system that you can actually request a specific specialist. I did years ago and it worked. Basically in Ontario, you can request a specific specialist and most GPs will honour the request. If your doctor feels a different specialist is more appropriate, they could refuse to refer to your chosen one however, you can always ask for a second opinion. If you 'prefer' one urologist over the other I  would hope your GP would support that. So if you want to see the Urologist at LHSC then make the ask vs. waiting to see if they send you to Stratford. Just thought I'd mention it.

Thanks for the info on the pelvic floor PT. I agree they are definitely hard to find. The one I see is only available one day a week and is about 40 minutes from where I live. But it's worth the drive!!

#Healthandwellness

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@Alwayslearning That is good to know about being able to request a specific specialist in Ontario. I did call my doctors office just before I saw your reply and said to make a note that I would prefer to see the Urologist in London if I need to see one, and the receptionist said she would pass that along (I mean, hopefully I don't have to see an Urologist again). 

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@Alwayslearning My Ca125 marker is always in the 40ies. Initially it went down to 27 and then up to 38 for recurrence. Then it stayed in the 40ies for the last 1 1/2 years. I explained it with a small bike accident, and then getting hit by sled etc but meanwhile it is just up. It is a bit nerve wrecking but all CTs are always w/o recurrence. PMH oncologists say that there are 40ies people - so, looks like I am one of them. I would think with real growth the marker will double constantly.

@Tanja thank you for sharing this. I have read on my Lynparza Facebook site about folks who hover consistently with high CA125's. It is such a strange marker. I appreciate you sharing. I do hope your CT's continue to be NED!

#Supportandencouragement

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