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I have struggled with a sense of belonging since my endometrial cancer diagnosis at the end of October. I felt like I don't belong to the cancer community since I have decided to pursue a hormonal treatment, and not have surgery, etc. 

I recently reached out and was connected with the social worker at LHSC that sees gyne oncology patients, and today we had our second session/continuation from our intake appointment last week. At the end of it, she mentioned that she might only be able to provide her resources to me for a short term. 

1. I know I have issues/worries about continuation of care (mostly following my experiences earlier this year), and she was aware of this too.
2. I know I'm not the only person/I know she has other patients that she has to see or work with. 

It just bites, though, since it took me 6 months to learn about these resources, and she said so herself that I am one of the types of people that usually get overlooked in accessing these resources since I'm not actively undergoing treatment in the sense of chemo/radiation/surgery, etc. 

I guess I'm just upset or taking it personally, feeling like I'm not a typical enough cancer patient to belong or access resources. 

Sorry for the rant of sorts, I just needed somewhere I could express myself and feel heard (I will say, even though this forum is for Ovarian cancer, it was one of the first places where I truly felt welcomed, and continue to feel welcomed in 🩷). 

Side note, my gyne oncologist increased my Megestrol dosage a month ago, and I think that's been causing me to feel more moody and emotional the last few weeks (gotta love my medications that mess with my hormones lol). I see him on Tuesday next week to follow up, so we are almost there 😅

MissERP,

   I am glad that you shared your feelings of isolation in the medical system in this forum. That sense of belonging is a big deal. We are here to support you. It is difficult enough to navigate through a bewildering diagnosis and treatment, but to also feel disconnected and not well supported. That is awful and it doesn't seem right or fair. I am sorry that you are going through this. 

   I don't know if getting support is reliant on where we live, but I had to search online for cancer support, as there was nothing offered in my community. (I live in a small town on Vancouver Island). 

  Do you know about Wellspring and all their fantastic support programs? It might not be the same as what you are seeking via a social worker, but they offer a huge variety of helpful resources, both in-person or online. You may already know about this. 

   I hope your meeting with the gyne-oncologist goes well and he is helpful. 

@MissERP rant away, your feelings are valid.  Have you joined the online teal teas?  Maybe that's another outlet to check out?  🫂  oh yes, I always forget about wellspring as I have not used there services as most are east coast based, but there is lots of online supports too.

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Thanks @LeslieA And @Meinvan for the suggestions. I have heard of Wellspring and look through the programming calendar on their website every so often. It is tough to participate in a lot of their programs since most take place during the day/business hours when I am at work. Similar thing with the Teal Tea talks, the Thursday afternoon one doesn't work for me, but I did attend the evening one for the first time in April, and thats where I learned that there should be a social worker or other resources available through the cancer centre at LHSC. I did find an evening Zumba class online through the Gilda's Club of Toronto, but its focus is on movement and having fun (which is okay, it has helped lift my spirits the last few weeks). 

@MissERP I am certainly happy you found this group. It is an awful to feel isolated and regardless of your treatment path choices, you should have the same access to support for physical and mental health. 

I would ask the social worker to define what a 'short time' means. Is she limited for some reason as to the number of sessions she can have with you? If so then why? Is it time based? Number based e.g., she can only meet with you 6 times for an hour. If that's the case, then suggest she meet with you 12 times for 30 minutes. I'm just throwing possible options out there. I would also ask what you might need to extend your time with her. For instance a note from your oncologist? If she is not able to provide additional time beyond whatever she can provide, ask her to provide you with other suggestions/alternatives. It's within her scope to be able to suggest other resource that might be available to you.

I'm also not sure if you are working and if perhaps your company might have an Employee Assistance type program where there are possible resources. Again, just 'spit balling' options. I also hopped on the Canadian Cancer Society website. They have Information Specialists you can speak to who can help guide you towards resources including emotional support services. I've put the link below:

https://cancer.ca/en/living-with-cancer/how-we-can-help/talk-to-an-information-specialist

I hope some of the above, including the information @LeslieA and @Meinvan shared will be helpful. Please know that we are here for you and you can "rant" to us any day, any time!!!

#Supportandencouragement

@Alwayslearning for sure. 

I do have coverage through employer benefits for up to 10 visits with a social worker per year (I've already maxed that out and still pay put of pocket to see my current social worker). I was mostly a) hoping to lessen some financial burden, and b) bridge a gap that I feel like I have with my current social worker that I see for counselling. 

I do have one more appointment booked with this hospital social worker, and plan to express my concerns with her then and hopefully learn more like you suggest what short term means. 

I've also just been left confused by the whole ordeal, as she has mentioned a few times how I am the type of patient that they know gets overlooked and how great it was that I reached out. Then for her to say this is only a short term thing made me feel unworthy, dismissed, and once again like no one in the medical community cares about what I'm going through. I will see what she says on Friday (and to be honest, speaking with her weekly is overwhelming and not even what I wanted). I might try and mention it to my doctor on Tuesday as well, if he cares or has any influence in the situation.

I know I did reach out to the Canadian Cancer Society back in late fall after my diagnosis, all they sent me was some long like 50 page pdf document on handling emotions and cancer. 

I will check out that link though, maybe it will be more useful.

I just wish that some of these medical professionals I've dealt with over the last seven months would take a walk in my shoes...

@MissERP I'm so glad you've tapped into your employment benefits. I do find that sometimes people don't look in that direction. 

I'm glad you are preparing for the discussion with the hospital social worker. Make sure (if you haven't already), to write your questions/concerns down so you get everything covered. I tend to forget things when I'm in the midst of a discussion, so my 'lists' are always so helpful to me. I agree the commentary by the hospital social worker is very odd indeed. Not very "welcoming" or sympathetic to your situation. I only connect with my social worker every 3-4 months. If I need her sooner, I know she'd be available but I like to let some time lapse between speaking with her.  I'm hoping getting her to understand what meeting frequency would work best for you, will hopefully allow for an extension of the number of sessions. 

Definitely speak to your doctor. Be that strong advocate for yourself. 

If you follow up with the Canadian Cancer Society and speak to an information specialist, I'd certainly be curious as to what support they can provide or where/how they can direct you. Your learnings may be helpful to others.

I was also wondering if there are any Facebook groups you could join? I found one for Lynparza/Olaparib that has yielded some interesting information for me. I also did a quick google search and found the following groups: My Endometrial Cancer (https://www.myendometrialcancerteam.com) and Uterine Cancer Support (https://www.sharecancersupport.org). The latter is a U.S. group however I've found that many women in Canada have connected to U.S. based online forums. You may already be familiarized with these so forgive me if it's duplicate information.

Good luck on Friday and next Tuesday. Please keep us posted.

#Supportandencouragement

Thanks @Alwayslearning

My appointment on Tuesday with my doctor was a bit of a disappointment. I waited over 2 hours and saw him for 5 minutes. I follow up next month on June 23, my appointment is earlier in the morning that day so fingers crossed he is more on schedule and not so rushed. (My mom did come with me, but at some point in our 2 hour wait time I got grumpy with her and told her to go sit in the waiting room with everyone else, it was maybe a mistake, she might have been able to help me get my questions asked, live and learn lol).

My phone call with the social worker on Friday went better. I said right off the bat that I was confused and wanted clarification, etc. So, we talked about that for a bit, and she did confirm that it would only be short term working with her, but I am welcome to call anytime if something comes up. 

We had a good conversation about how my appointment on Tuesday went, and she was going to reach out to a clinical care nurse of sorts to see if I might be able to talk with her. Otherwise, I talk with the social worker again the week before my follow up, and she mentioned she could always send a note to my doctor saying I have concerns I want to discuss at our next appointment. 

So things were okay this week. I went for my manual lymphatic drainage on Thursday and had a good conversation with her about it all. The lady I see for lymph was nurse and her daughter is a nurse practitioner at LHSC, so she had some good pointers on how to make the most of my appointments. 

Next time will be better 🩷

@MissERP I'm sorry your doctor meeting was a disappointment. Do you get to see a nurse and a Physical Assistant? I don't always see my oncologist at my meetings. That's typically every 3rd appointment if things are progressing 'as normal'. When I do see her, it's typically for 5-8 minutes so I certainly understand that it feels like such a short amount of time. I tend to utilize my time with the nurse and or the PA to get information across and/or my needs discussed. That way when I see the oncologist it's to focus on anything that's really of importance.  I completely understand how it must have frustrated you. At least as you said it's a learning experience and having another person with you can be just as important as you being there.

It's good that the social worker call went better. It sounds like she's trying to help out. I did utilize my social worker as an advocate, similar to what you are doing, when I got frustrated with the team at the Sexual Health Clinic at PMH. My therapist did a great job of getting my concerns heard. Hopefully yours will be a similar advocate. I also love that the nurse during your lymphatic draining provide some advise. My experience has been that nurses really tend to be the ones steering the ship at times. I am very thankful for all that they do.

I sense that overall there were some frustrations but you are feeling better about your journey. I know there are still things that can improve however you are working it with the baby steps forward. Good on you. Please keep us posted and if there are any questions you feel the Teal Sisters can help you with, please ask. There's lots of wisdom in this group. The cancer's may be different but the experiences we have on our journey's tend to be very similar. Take good care and have a good week.

#Supportandencouragement

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Hi @Faith H,

Welcome to the OV Dialogue. 

I personally received my lymphedema diagnosis in May of 2025, so before/unrelated to my endometrial cancer diagnosis, however, I have seen in my reading about lymphedema how it can occur after cancer treatments, so I feel frustrated for you that your gyne oncologist would say its not related without even examining you. That said, there may be others on here that have more experience with lymphedema following their treatments, etc. Hopefully others will see your post and chime in. 

About my lymphedema experience in general, I was diagnosed by a vascular surgeon, he signed off on the paperwork for me to have custom compression stockings covered through the ADP in Ontario, and I've not seen him again (I think he retired, doesn't really matter). 

Even though I have custom compression stockings, I struggle to wear them (mine are a pantyhose style that go all the way up). Before my cancer diagnosis I suffered with a lot of irregular menstrual bleeding that made it awkward, and since then I have been dealing with some bladder leakage which again makes wearing my pantyhose compression awkward when I have to get to the washroom urgently. (The stocking fitter determined a full length pantyhose style is best for me, and said anything less wouldn't work very well).

I do believe the medications I am on have my lymphatic swelling worse, I mostly to get to the pool once a week, manual lymphatic drainage every three weeks, and things like elevation, moving around every so often, drinking enough water, etc. So, all very similar things that you already do. I also like using the lymphadiaral cream from Pascoe, I find it helps keep lymph moving when I use it regularly. I ran out between lymphatic drainage appointments and noticed the difference. 

The only other thing I can think of to suggest would be maybe a vibration plate or a mini trampoline (if you are okay with bouncing - personally I have balance issues, so a mini trampoline is a no go).

I'm not sure what province you are in, but maybe there is some sort of specialist your family doctor can refer you to for your lymphedema if your gyne oncologist isn't any help? 

Here is a link to the Canadian Lymphedema Framework, they have a section for patients with tips and advice, something in there might be of help? Canadian Lymphedema Framework (CLF) https://share.google/gR0SiVgLXHelIYg8n

I wish you success in finding some more solutions to help with your lymphedema 🩷

@MissERP thank you for sharing this information. No doubt this may be of value to many others on this site!

#Treatmentandsideeffects

Hi @Faith H and welcome to OVdialogue. I appreciate you sharing your story and your question. I do not have any personal experience with lymph drainage however I see that @MissERP was able to share some of her personal experience. ❤️

Do you have a follow up appointment with your oncologist?  I know from my own experience that they do have a myopic focus on items they feel are directly related to the cancer diagnosis. I understand that they have finite time so have to be focused. It may however be helpful to ask your oncologist if she knows of other patients who have experienced this and does she have any suggestions? You aren't asking her to do any follow-up rather, just to help with some support and guidance. You can certainly mention you'd discussed it with your GP as well. I have had some side effects from my cancer surgery and my oncology team have thankfully ruled out recurrence. The thought is my issue is scar tissue/adhesion related. I did discuss options to further investigate the cause with my oncology team and they referred me back to my GP.  They listened and were empathetic however they had done the testing they do (CT scan, bloodwork) and it was clear that if I wanted any additional support I had to find it elsewhere. I understood and thus, my GP has been exceptionally helpful in the process. Hopefully yours has been supportive of you.

I am glad to hear that you have a good quality of life. You mentioned a January recurrence and chemo hesitancy. If your cancer stable e.g., any following testing from January has shown no further progression? I can certainly understand wanting to avoid chemo if things are status quo.

I will also mention the Teal Tea's that happen monthly. They are ZOOM calls and you may find some individuals in attendance with lymph drainage or other related issues. The next one is on June 23rd. I put the registration link below and you can always find it on the homepage for OVdialogue or under the Events tab at the top of this page.

https://secure.ovariancanada.org/site/Calendar;jsessionid=00000000.app20027a?id=103576&view=RSVP&s_locale=en_CA

Beyond @MissERP there may indeed be others on this site who have experienced this. If it's of any value, you may want to start a new post with the subject of lymphedema or lymph drainage. That may attract more individuals when they see the subject line. Just a thought. 

Regardless thank you for sharing your voice and story! 💙

#Introductions #Supportandencouragement #Healthandwellness

@Faith H as an update to my post, I just saw you created a separate post on Lymphedema. You are one step ahead of me!! 😁

Thank you @Alwayslearning I appreciate your encouragement, yes, I will stay in touch 🩷

Hi @MissERP one OVd Community Champion, @LeslieA just reminded me of another resource that you may want to check out: Inspirehealth.ca

As Leslie reminded us, it is a resource for all Canadian women. They have a holistic program (online and in person) that tends to physical, emotional, mental health, and nutritional support to name a few. There are also cancer doctors available to confer with.

Leslie mentioned she has used the resource many times and said that is has helped her immensely. I'm sure @LeslieA would share information if you are interested. I thought of you as I know you've had some challenges relative to quality/quantity of time with your social worker. Perhaps there are some opportunities for support via Inspire Health.

#Healthandwellness

Okay, I will check them out when I have a moment to sit quiet lol. Thank you @Alwayslearning