OVC Surgeon’s

LUCY_BC

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.

jobo

Hi Lucy - I'm so sorry you're going through this.  I don't actually have anything helpful to advise, but I just wanted to say that venting is good, and this is a great place to do it, because most of us have been through some kind of nasty experience like yours.  

Can your oncologist offer any help in getting moved up the queue, or even your family doctor?  

Fearless

@LUCY_BC I'm so sorry to hear of your dilemma. I can feel your frustration and disappointment.  Somehow we all end up in a queue at some point, were it by virtue of Covid, or understaffing or all manner of reasons causing wait times not in line with our expectations of urgency.  That said, yes, wait for an surgical oncologist.  You need someone trained in the aspects of our disease to conduct that surgery.  A general gynecology surgeon won't have that expertise. 

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.  tkolwich@ovariancanada.org 

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.
  

Brenda

Hi Lucy,
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

Fearless

@Brenda, so sorry you're having the same challenge as is @LUCY_BC I know she's in the BC system. Wondering if same for you or the backlog issue is becoming more prevalent across the country.  

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.  

kastoyles

@LUCY_BC - I can understand your frustration in having to wait. As @Fearless - Vol Mod  said, you will continue to get the benefits of the chemo until your surgery.  My surgery was done by a gynecologist. At the time he didn't expect my tumour was cancerous, however, the pathologist said otherwise.  When I saw the gynecological oncologist, he indicated that he would have done the surgery differently knowing there was cancer present.  Ask to be put on a cancellation list - who knows you may get lucky and have the date moved up. Stay positive!  The time will pass quicker than you think.  Hugs!

Brenda

@Fearless - Vol Mod I'm in Quebec. I was called for pre-op next week then another ct so I'm hoping surgery will be in August. In the meantime, I'm try to enjoy vacation at home!

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!

LUCY_BC

Well……here I am, still waiting for surgery. I’m scheduled for Sept. 20th……previous date of Sept. 9th was rescheduled due to delay in 4th chemo, because of low platelets.  I’m very nervous due to concerns of further delays due to low blood counts.  I know there’s certain minimal blood count numbers you need for chemo, but I’m not sure if there’s a minimal range for surgery?  Pre-Admin. has not called yet, so I’m hopeful for tomorrow (Monday). In B.C. you don’t get to meet your surgeon until you’re wheeled into surgery.  Gyno-Oncologists work as a ‘team’ here. They’re excellent surgeons but it sure would be nice if you could meet them prior to surgery in an office setting.  But….I do believe that it doesn’t matter which surgeon I get because they’re all amazing.  I just don’t know if I could handle another delay. I have to be hopeful !  I feel good right now…..I’m ready for surgery.  I’ve been waiting since Jan. (Chemo started end of May) Wish me luck👍

Fearless

@LUCY_BC
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_BC

Surgery went well on Sept. 20th.  I had a rock star of a surgeon, which was communicated to me by ALL STAFF.  The uterus was left in due to being fused to the bladder a bit.  But no disease of the uterus or bladder. The appendix was taken out due to cancer deposits and of course the ovaries, tubes & omentum.  While recovering in hospital, a bowel blockage or kink occurred, so they went back in thru same incision for exploratory abdominal surgery. Good news, nothing found, so kink must’ve worked it’s way out.  I’ve had bowel problems ever since starting chemo.  Recovering well at home aside from treating my bowel very carefully……because I get my 5th chemo on Monday.  My Oncologist appt sent me home with PARP inhibitor info sheets to go over, to prepare questions for our next visit.  I guess I want to know benefits vs side effects. I think I was hoping for the elation of finishing my 6th chemo and then getting back to some normalcy.  I base it on my Mom who had OVC surgery, then 6 rounds of chemo…..then 4 yrs disease free.  But there was no PARP offered as a choice back when she had it.  The research on PARP and side affects leaves me feeling deflated, knowing that there could still be a continuation of chemo.  I want more input from the doctors to make my decision easier and clearer.  I’m assuming there’s people on this site who went thru the same decision process.  I will find your posts on Parp and utilize the info in putting together questions to ask my Oncologist & Surgeon. TY
🥰 Lucy

Fearless

@LUCY_BC First of all congratulations on a successful surgery and getting the local rock star for a surgeon.  Clearly you're in great hands all around.  Yes, there has been a lot of discussion around the PARP's...some of it dependent on which one they are suggesting for you.  I am high grade serous 3C and not BRCA but over two years ago when I recurred I was offered a clinical trial for Olaparib/Lynparsa (very different purpose than what they are suggesting a PARP for you but same dosage every one gets).  I had almost no side effects. They started me a 300mg and in the first couple of weeks had some muscle pain so they dropped me to 250mg and for the next two years I was just fine. Other than onoing fatigue I can't recall any issues. That said, others have had side effects that caused more discomfort than I experienced, and with Zejula/NIraparib, another PARP that's in frequent use now, there have been the same mixed reports. It just goes to show that we all respond and react differently.  I can say though that if there is a good chance a PARP may help sustain your recovery and keep you from recurrence it might be worth trying. If there are any side effects they usually show up almost immediately and if adjusting dosage doesn't resolve the problem you can always stop.   But yes, going through the discussion threads on the topic and I think there may be some information on the OCC website on PARPs will definitely help prepare you for a good discussion with your cancer care team. 

Stay well and keep us posted on how you're doing......

  

LUCY_BC

Thank you for your info. I’m HGSC Stage IIIC. Question; Parp seems to be for 2 yrs., what happens next?  Is parp basically a maintenance program that buys a person 2 yrs of no recurrence?  Then it’s back to monitoring with scans, chemo, surgery (as needed)?  Also; does parp only affect the cancer cells and leave our good cells alone?

Fearless

@LUCY_BC
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.  

twicelucky

I am also glad your surgery went well. Just info for others out there faced with this dilemma, I chose to have my surgery done by a regular gynecologist. I am also in BC and would have had to wait to see a gynecological oncologist and I did not want to wait - I just wanted that cancer gone. I had the surgery two weeks after seeing the gynecologist, after an ultrasound indicated tumors, and a blood test showed the CA125 was elevated. It was Stage IIIC serous. When I finally went to the cancer clinic after the surgery both my gynecologist and me were chastised for not following protocol. However for me it was the right decision; waiting would have been torture. I am now in my 7th year cancer free, so that gynecologist knew what she was doing. Everyone is different and yes, using the specialists statistically shows better results. But waiting can be a terrible thing mentally and emotionally.

LUCY_BC

I understand completely in your decision making, regarding wanting the cancer out ASAP. I was very close in making the same decision because yes, it was torture waiting to get surgery. You being cancer free for 7 years is amazing !  Were you put on a PARP Inhibitor ?  I’m so wanting chemo to be over, my 6th reg. chemo is in a week or two (based on lab results). My oncologist has me starting PARP 12 weeks after my 6th chemo treatment. So, that does give me a bit of a break in being chemo free.

twicelucky

The parp inhibitor was not available seven years ago so no, I was not on it. If I have a recurrence then I will probably get it. I had six rounds of chemo starting six weeks after surgery, 18 weekly sessions. I was exhausted by the end of it, but luckily never had to miss one because of low blood counts. 
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!