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Surgery decision for stage 3 or 4 ovarian cancer
Kathyd
6 Posts
Hello everyone,
I’m not sure if I am posting this question in the right place or not. If someone can suggest how to get a wider reach, can you please advise?
In the meantime, I am looking for input/suggestions/experience/questions/wisdomon 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 🦋
13 Replies
Kathyd

You have chosen a great forum to post in. Thank you for taking the time to introduce yourself to our community. Deciding on the right treatment for you is a big decision and it can be so helpful to hear from others who have been there.

I would like to introduce you to JustJan‍, Elsie13‍, BeamBlossom‍, Sandy L‍, JRH78‍ who can share their experiences.

Surgery is the main treatment for all stages and types of ovarian cancer. Here is some additional info about treatment for ovarian cancer: Treatments for ovarian cancer - Canadian Cancer Society. Our Cancer Information Helpline is available to talk you through this information as well. You can reach them at 1-888-939-3333. They are so helpful and knowledgeable- I hope you reach out.

Keep us posted, we are here to support you through this,
Lacey
JustJan
449 Posts
Kathyd‍, welcome to what I hope you will find to be a caring and supportive community.

I was diagnosed with Triple Negative Breast Cancer in January 2019. Just four months later, I was also diagnosed with Ovarian Cancer. For me both of these were stage 1. My surgery for the ovarian cancer was pretty straight forward with a total hysterectomy and omentectomy, done laparoscopically. Chemotherapy followed. Like you I am BRCA 1 positive and am on Olaparib for two years. I have been on it for 16 months now. I can appreciate your angst with having the surgery they are recommending and you're right it does kind of sound like an autopsy . For me some questions I would ask are:

1) Do you view the surgery as curative?
2) What are the risks of the surgery?
3) What is the post op recovery like? How long, how painful, how much help will I need?
4) What are the long term side effects of the surgery?
5) What will my quality of life be like afterwards?
6) Can we put the surgery on the back burner for now and watch and see? This would give you time to recover from chemo and see how the Olaparib works for you.
7) What if I don't do the surgery?

You may find some of these useful and probably some of them you have already thought about. If you have any questions, please don't hesitate to reach out. I am happy to support you as best I can.
Elsie13
1531 Posts
Kathyd‍ , Sorry you are going through all this, and so sorry your son died.
I've never heard of this before, getting the cancer 10 years after a hysterectomy! (But I don't have medical training). Ten years ago, did they give you a big pathology report, if I may ask?

I had stage 2 ovarian cancer in 2016. I asked if it could be genetic, and they said "no, not with this type of cancer." I had some clear cell carcinoma. I had a hysterectomy, chemo and radiation, and now I'm No Evidence of Disease.

I think JustJan‍ 's list of questions is excellent!
Kathyd
6 Posts
Hello to everyone who replied, and thank you so much for taking the time to respond. What a great resource. I’ve been too tired to use it before, so this in itself is a big step.

So I am finding the reply function confusing. And responding to each of you individually doesn’t seem possible? Tagging people is another challenge. Aaargh. Im normally very good at tech stuff, my apologies. I’ll figure it out and get better. For now, this is a group reply.

Lacey, Jan, Elsie, thank you so much for the suggestions and resources. Jan, that is an excellent list of questions, and I have copied them for my meeting. Yes, some of them I have asked, but dealing with three surgeons has confused things...do any of you find a real disconnect between your oncologist and the surgeons. The surgeons revealed things to me that my oncologist had never mentioned, and it was unsettling.
Elsie, I hear you on how strange it is to get ov ca with no ovaries...I believe the stats are that it happens in about 4% of women. You can imagine my disbelief. I did not get a big pathology report after my hysterectomy, and I feel that my GP wasn’t diligent enough in the follow up. I’ve heard the theory from the gynaecology surgeon that they did pathology of everything including my Fallopian tubes, but since this was pre awareness of ov ca starting in the tubes, they didn’t test closely enough. Her belief is that cells were left behind, and that became this. It’s all quite surreal to be honest.

Your stories touched me. Thank you for sharing them. It’s really encouraging to hear strong, wise, and healthy voices. I’ve found this a lonely journey without knowing other women with the disease.

So now I will attempt to post on the other forum recommended. Wish me luck 🤗

kathy 🦋
BeamBlossom
15 Posts
Hi Kathyd

Welcome to this group of kind and supporting women.
I was dx Dec 2019 with stage 3 HGSC, I do not carry the BRCA mutations. After 7 rounds of chemo and debulking surgery half way through those treatments, I was declared free of the disease with a CA125 of 8 in July 2020. Starting in September the CA125 started to rise, a CT scan in Nov showed 6 enlarged pelvic lymph nodes and a small (2-3cm) lesion on the abdominal wall by my R kidney. The lymph nodes were all under 3cm.
Treating this recurrence was delayed 3 mos, while I tried unsuccessfully to get approval for a trial. The trail required a CT in Jan it showed 2 lymph nodes had shrunk, one was stable, 3 increased slightly, my CA125 was 51. Treatment started end of Jan with Taxol weekly and Avastin every other week. About that same time, a PET scan was done while I was being assessed for another cancer. Strangely but wonderfully no lymph nodes lit up on the PET scan, no evidence of abdominal cancer was found, my chemo treatment stopped after completing only 1 cycle. Blood work done in early February showed a CA125 of 8. I am off treatment now and I’m a watch and wait mode.

If I were you, I’d be asking:
will Lynparza shrink the cancer or just keep it stable?
Has testing been done to show which chemo the cancer cells are most sensitive to?
Why not have more chemo, hopefully one specific to your cellular structure and genetic mutations ( beyond BRCA) to eliminate that 3cm tumor?
If these approaches are not available at your current treatment centre can you get referred to a major Canadian Cancer Center, or consider an American option such as Dana Farber in Texas. They can do file review and recommendations by telephone.

Ask God to bless you with strength of body and peace of mind while you sort this out.
Elsie13
1531 Posts
Kathyd‍ , I can explain about the tagging. To tag someone, you type the @ symbol, and immediately start typing the person's name. A few blue boxes should pop up, and you click on the one that matches.
Hey Kathyd

Happy to explain how replies work ☺

You can hit the reply button under any of the posts either way it always shows up at the bottom of the thread. what I like to do is use one reply and tag each member individually with a little message to them. You can tag by typing the @ symbol and the person's username.

Another thing you can do is hit the quote feature under the post you want to reply to and this shows the message your replying to in your reply.

There really is no wrong way to do it!

Glad to see you connecting with people and always happy to help.

Lacey
Sadie12
31 Posts
Welcome Kathyd

I don't have much to offer in terms of advice...I still feel like a newbie here. I can certainly understand your questioning this surgery. Diagnosed HGSC Stage III at the end of Sept 2020, had complete debulking in October, chemo from end of Nov, just wrapped that up mid-March. I would believe that with my CTScan and CA125=15 that I am in remission. Hoping to start olaparib very soon.
My tumour was BRCA positive but I haven't had the blood work to confirm that I am indeed positive for the BRCA gene.

I just wanted to welcome you and express my condolences for the loss of your son.

I've had some great support from this forum, so I am glad that you joined.

Sadie12
Kathyd
6 Posts
Hello Sadie12‍ , thank you so much for the welcome, your kind words, and for your condolences. Needless to say, it has been really tough. At times it is hard to muster the energy for the cancer process. People tell me I’m a warrior, but to be honest I’m really flipping tired.

Oh, it is so great that you seem to be in remission! I am waiting to hear that word. The Olaparib has been working well for me, (except for terrible heartburn and deep fatigue), my ca125 numbers have been dropping well. Recent bloodwork showed it up by 8, it’s not significant but how easy to go to worry. Are you delaying starting until you get your bloodwork? I was anxious about getting on something after my chemo ended, I hope you are approved for it very soon.

thank you again for reaching out Sadie.

kathy
Sadie12
31 Posts
Kathyd
regarding delaying olaparib...supposedly, it has been approved but waiting for funding and my oncologist appt on Apr 19th...
I had a 'check-up' CTScan the other day...I'm not sure when she will check my blood again. LOL...I don't often sit in the passenger's seat, but I'm letting my lovely, smart oncologist drive the bus...😊
fingers crossed.

You hit the nail on the head about having energy left for the cancer process. I wish life could just 'freeze-frame', so we can deal just with the cancer and put everything else we have to deal with on a shelf to pick up later.

I like that you are doing complementary treatments and therapy...I'm a big believer in meditation and yoga, trying to minimize stress as my side-gig to the medical stuff. Although, with my Stage 3 and size and spread of tumour, I credit my surgeon for saving my life last October so that I could get serious about looking after myself.

Love and strength to you,
Sadie12
Kathyd
6 Posts
Hello BeamBlossom‍ and thank you for your valuable input..I have copied your questions for my meeting. I have asked about not having surgery, and my oncologist says he would support any decision I make, but there definitely is a strong bias, if not subtle pressure to do it. They took my case to conference and ‘unanimously ‘ agreed that surgery is the best option. Regarding more chemo, it seems they see Olaparib as the more chemo, and targeted. I have been told that Olaparib can shrink the tumour. I have also been told that if we are doing surgery, there needs to be something there to remove, and that they are not confident that Olaparib will eliminate any sneaky cancer cells lurking the the shadows. A consulting oncologist that I have seen says that surgery is not curative, my primary oncologist says that surgery can be curative. Oh the challenges of 2nd and 3rd opinions....helpful, but more confusing and complex!
@Lacey_Moderator‍ and
@Elsie13 thank you for the tech advice, I’m getting the hang of it! But sometimes the little blue box doesn’t pop up?
onward,
kathy 🙏
Hi Kathyd

Are you on a mobile device? On mobile I noticed you need to type the @ symbol full username and type space for the tag to work. We are looking into why it is behaving this way!
Kathyd
6 Posts
Lacey_Moderator‍ yes, Im using my phone for most of my chats. I will try what you have suggested. Today, blue box is popping up perfectly 😊🙏
thank you!
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