Surgery decision for stage 3 or 4 high grade serous

Hello everyone,
I’m Kathy, from North Vancouver, thank you for hearing me.
 I am looking for input/suggestions/experience/questions/wisdom on a possible upcoming surgery. I was diagnosed with high grade serous ovarian ca in May of 2020, even though I had a total hysterectomy 10 years ago, for fear that I would follow my mom’s footsteps of ovarian ca. Big surprise, I got it anyway, and tested positive for the BRCA gene.  
I did 6 months of chemo and responded really well, the tumour shrunk over 75% in size from 11 cm to about 2 or 3 Cm now. My CA 125 has gone from over 4000 to currently 65. I started Olaparib, the PARP inhibitor oral chemo targeted therapy in December, and am also responding very well to that. My oncologist says it might even be more effective than the IV chemo for me. The protocol for olaparib is 2 years twice daily, and it’s been successful in keeping some women in remission.
I have been told from the beginning that surgery was recommended, however it hasn’t been possible or safe because the tumour was lodged between my liver, my right rib cage, diaphragm, and right lung. Now that it has shrunk, it is accessible for surgery. On my consultations with three surgeons so far (gynecological, thoracic, and liver), I was briefed on the most horrific sounding procedure, involving removing two ribs, a chunk of my liver and about 50% of my diaphragm. It felt like they were going to perform an autopsy. I stalled on the surgery, sought out other opinions, and continued all the complementary treatments I have done throughout...hyperthermia, acupuncture, vitamin IV therapy and mistletoe, and lots of emotional work, including deep grief therapy as my only son died a year before my diagnosis.  
I can’t shake the feeling that maybe I can become cancer free without this radical surgery, but all of the oncologists except one, say that surgery is my best chance to get all of the cancer. I am not anti surgery, but I also believe in least invasive approaches, and the idea of losing half of my diaphragm really concerns me. I’m no athlete, but I have many hills to climb and waters to swim, and I’m a young and single 60.
The research that I’ve done in the cancer journals does say that we do better with having surgery vs not, but I’m not sure what ‘better’ means. I wonder at times if I’m being naive about this aggressive disease, and need to jump at the chance of surgical action while it is still contained and responding so well.
I have another consult with a gynaecological surgeon on April 23 (the previous one retired) and I would like to be prepared to ask the right questions to determine the best decisions. Anyone who has had similar surgery, or been faced with this kind of decision, I’d love to hear from you.
Any of your thoughts are welcome and appreciated. Thank you.
love and best to all, kathy 🦋

Comments

  • Hi @Kathydornan
    I see you're a returning member and so glad you thought to reach out here for more support. Our members come and go as their needs and situations change. It's wonderful to know this community is here for all of us, anytime we need it and for whatever reason.

    I am so sorry to hear of your challenges, especially on the heels of the loss of your child.  I can't imagine anything more difficult. But you sound so resilient and strong despite all.  What you've endured and how you are managing is truly inspirational.

    I too am in recurrence but nothing to the extent of your journey, other than I too was on Olaparib for two years to treat my first recurrence. It was a clinical trial though, for patients who were not BRCA for which the drug was actually developed. Regardless it was a great success shrinking my cancer to microscopic size in the first few months and then stabilizing it for another year plus when the drug ceased to work for me and the cancer began to advance again.   But surgery has not been an option for me. Only chemo at this point. So I can't share any experience that might be of help to understanding the consequences of whatever decision you make. However, I've always been a believer in making informed decisions.  So perhaps some questions I would be asking, were I in your shoes - most of if not all I expect you might already have though of.

    1. Is the surgery considered a curative attempt or just a stabilization for a period of time, at which point other intervention might be necessary?
    2  If you were to choose to continue the Olaparib, what is the window of opportunity to default to the surgery? What other options are there should the Olaparib cease working. 
    3. If you opt for surgery, what should your expectations be relative to quality of life moving forward. Given how invasive it seems what should you expect post surgery and how will that impact your desired way of life and activities.
    4. What are the odds of the cancer returning /progressing with Olaparib and with the surgery option?
    5. If the Olaparib was to continue to stabilize the cancer post the 2 year period, what happens then? 
    6. How much surveillance would be involved if on the Olaparib....specifically the ability to identify progression early if that happened?
    7. What happens if you opt to start the Olaparib and either decide to do the surgery later or circumstances require you to stop the drug and move to surgical intervention. Would a maintenance drug, Olaparib or other, have been a post surgical option but now no longer available to you?

    When I recurred after almost two years, I had the option of entering an Olaparib focused clinical trial or chemo.  The efficacy of the Olaparib was an unknown while the chemo would almost certainly eradicated my cancer for an extended period of time. Looking at the odds, I opted for the trial since my recurrence had been caught early, that we'd know if the Olaparib was having any significant effect within the four months and at that point, if not, the cancer would not have progressed enough to cause me any risk...with the option of chemo always available if required.  I felt a preference for the Olaparib to give me a better quality of life and to extend the period between chemos as long as possible.  And, for me, it worked out.  The Olaparib does have it's own toxicity and side effects which, for me, manifested more in terms of fatigue that wouldn't totally abate.  But generally I was in no discomfort for the almost two years I was on the drug.  That said, because I was on a clinical trial the surveillance was intense...every month blood work, CA125, check up. Every two months a scan. So I was always confident we'd catch progression very early on and move immediately to the chemo option....which is what has happened.  But important to know that since I have had the Olaparib, and it eventually stopped working, I no longer have the option of using it again for maintenance purposes...for me, not being BRCA it would be Zejula, another PARP inhibitor.  

    I don't know if any of this helps Kathydornan.  It is a difficult decision to make at the best of times.  Of course, my default is always to ask my doctor.....if this was your wife or life partner, what course of action would you be hoping they'd take?  

    Do let us know what you decide and how you fare, whatever choice you make. Regardless, do know that this is time in the history of this disease that newer and newer options become available to us and we are truly living longer and better lives.  I wish that for you too.  
     <3 


      

  • Hi Kathy; the surgeons you’ve spoken with......are they out of VGH?  They have great OVC surgeons there.  My mom’s surgeon was Dr.Dianne Miller.  I would love my surgery out of VGH, but my catchment might not be in my favour.  Tri-Cities is part of the Fraser Health catchment, so I’m not sure where my surgery will be.   You have a huge decision to make, and I’m sure your doctors will give you the best advice and care.  But the patient is still the best advocate, in knowing how they want to live their life.  I know you’ll make the best decision for you. 
  • Hi Lucy,

    I am a bit further out than the tri cities, also in Fraser Health.  I had my surgery at VGH and was told they don’t do the surgery in Abbotsford or Surrey.  I did have a friend, with the same  surgeon, have her surgery  at UBC.  My chemo and oncologist is in Abbotsford.  
  • yes....I did find out yesterday, that my surgery will be @ VGH.  I was very relieved.
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