Surgical Doctors
I was wondering if any of you had a regular gynaecologist do your surgery OR you had to wait for a Gynaecological Oncology Surgeon to do your surgery? I’m on the west coast and was referred to our BC Cancer Agency back in April. After 2 chemo sessions I finally got an appointment with a surgeon. I was so excited to finally hear about my surgery date because my CT Scan showed excellent shrinkage, all ascites gone, organs are normal and my CA125 markers went from 297 in May to 35 mid July. My Oncologist was very happy with the results & was going to book me for post surgery chemo after my 3rd chemo. BUT when I met with the surgeon, I was told that there’s a 4-6 week surgical wait list ( my jaw dropped & my eyes teared up) I couldn’t believe what I was hearing! I should’ve been on this wait list months ago. They felt I might as well get a 4th chemo while I wait. There’s 8 Gynaecological Oncology Surgeons in B.C. Maybe I should get an experienced Gynaecologist to do the surgery, so I can LIVE?! I get the feeling that people don’t die of the cancer, it’s from the waiting of needed surgical treatment. I’ve lost all hope! Our medical system is overcrowded and spread very thin.
I can see a surgical wait list for knee or hip replacement but not for Stage 3C Ovarian Cancer!
Sorry I had to vent, I’m at wits end. I’ve been very patient until now. I’ve been looking into my symptoms since January and now it’s getting a bit too much to handle. I feel lost in a queue.
Comments
Can your oncologist offer any help in getting moved up the queue, or even your family doctor?
As for the delay, I think you can rest assured that the effects of your pre surgery chemo continue for some time. It's not as if in the gap between chemo and surgery the cancer starts growing aggressively again and you lose the benefit of the sessions you've had. This shouldn't disadvantage you and in fact it seems room for one more chemo session which should be of additional benefit to a successful surgery.
Yes, you have reason to be angry and disillusioned. I'm in the Ontario system but one thing that seems quite common is a inability on the part of the medical profession to manage our expectations well. Really it's all about communication and transparency so we know what lies ahead and what to expect. And not the fault of he professionals. It's just not something put as a priority in their training. But I can say I have noticed a positive change in that direction.
Do let your oncologist know of your disappointment. Ensure he/she and the surgeon are both aware you can be available quickly if an earlier opening arises and remind them periodically to keep your name front and centre. This is all part of advocating for yourself. Something we don't feel should be necessary but is.
There is a local support group out your way. I'm not sure how often or how they meet. I think possibly zoom. Some of that group might have input for you. If you'd like information on the group, or to join, contact Tracy Kolwich at Ovarian Cancer Canada and she can fill in the information for you. [email protected]
Try to be patient. I know... easier said than done. But you will find the time will pass quickly. Please continue to reach out when needed and do let us know how you're doing. You are not alone, and in our thoughts.
I am sorry to hear of everything you are going through. Just wanted to say I can relate to the frustration in waiitng for surgery. I was told today that mine will not be before Aug 10 (they didn't say when after that date).
The frustration is maddening!
Good luck to you!
xoxo
Love the discussion topic you opened today. Ways to make time fly can be useful for all of us when faced with waiting, whether treatment or, in many cases, for those critical scan and blood work results. I'll try to contribute myself but hoping more of our members weigh in. In fact, I'll mention it to the gals who join in at our weekly Thursday live chat. Many of them are in treatment currently and I"m sure have their own strategies for keeping occupied in a positive way. And you're welcome to join us any Thursday. Just sign in at 1pm EST and click on the discussion topic TEAL THURSDAY and that will pop you into our discussion that day.
I will try to join Teal Thursdays when I am free. Unfortunately I can't this week, but I put it on my schedule for next week!
We all wish you a smooth transition into surgery now and a great outcome. I too had a delay in my surgery back in 2017 and it was only a week but I can remember how stressful that was when I had had myself all prepped up to get it over with, was actually in pre-op waiting to be wheeled into the surgery when they told me they'd have to cancel and reschedule. For me, the delay was because the gal ahead of me turned out to be more complicated than expected so her surgery was going far longer so nothing to do with my own physical readiness.
But I will say my disappointment was quickly tempered when we arrived back home...a four hour drive from Toronto where the surgery was to take place...only to find a pipe leaking in my upstairs bathroom and water beginning to drizzle into my living room. Had the surgery taken place as planned my husband would have stayed at the hotel through my recovery and had we returned home five days or more later I can only imagine the damage to the house. So sometimes things happen for a reason I guess. Got the plumber in, problem fixed, damage only minimal and easily taken care of and the following Monday my surgery went off without a hitch.
So chin up gal. I know you've been waiting longer than you should and can totally feel the anxiety. But you're close now and it will be over before you know it. And the good thing is you're supported by some of the best surgeons and oncologists in the country.
Keep us posted but know you are in our thoughts and prayers all the way.....
🥰 Lucy
Stay well and keep us posted on how you're doing......
Good questions but better left for your cancer care professionals. The length of time for a PARP is generally regulated provincially.....funding models and treatment protocols differ from province to province. So your gyne/onc or a cancer care navigator in your cancer center can provide those answers to you, as well as the impact of the drug on cells. That said, there are lots of discussion threads on this site that may provide some of the information and lots on the internet if you know the PARP they are suggesting for you. There are several, with Lynparsa and Zedjula being the most common but also some new ones I understand are now being used, although I expect in trial only. Make a list of you questions, and also anything you have heard that might need validation as reference for your next check up/meeting. I'm fortunate that our Nurse Practitioner at our Cancer Center here encourages email so when I have a list of things to discuss usually email them to her in advance so she or my oncologist can be ready with the information.
I can tell by your later posts that you are feeling relieved to have your surgery done and chemo almost done. I believe that emotional well- being is so important in getting through this marathon!
Recurrence is always a black spot on the horizon for us all. We just don't know when it will come, or if. Apparently about 15% of ovca patients do not have a recurrence. I hang on to that statistic!