My wife is 57 and was diagnosed with 3c ovarian cancer last december. We had conflicting advice. Our local hospital proposed 6 chemo cycles followed by monitoring and possibly avastin. We got a second opinion and we were advised to go for 3 cycles of chemo ,surgery and 3 more cycles. We decided this was best . My wifes response to chemo was good and her ca125 marker went from 800 to 26 after 4 cycles. Unfortunately due to coronavirus her laparosopy and surgery were cancelled on march 20th and she was advised to go back and complete the remaining 2 cycles. We are hoping that surgery may be an option again in a few months. Is it possible or appropriate to have chemotherapy again post surgery to 'mop up' remaining cancer cells. Its been a terrible time for my wife and for all women who have been so badly affected by the consequences of the coronavirus. I witness the physical and emotional pain each day. Any opinions or advice are welcome,
thanks
tim
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Tim1963
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I had surgery then 6 rounds of chemo. I think doing chemo after surgery would ease your minds that any remaining cancer cells if any would be destroyed.
I would go with the advice of her doctor, and maybe even get a third opinion if you feel it could be helpful. This coronavirus has thrown a curve into everyone’s treatment.
I can't really advise on what's the best decision for you but I was advised to have surgery by my consultant. I didn't have a biopsy so I never really considered another option other than surgery follow d by chemo. From the pathology and diagnosis after surgery, I think this was the best possible decision I could have made. On reflection I think I preferred it this way round. As for chemo again after surgery as a "mopping up" procedure, I can't really think why this would not be appropriate. Wishing you both the best for whatever you decide.
Hi Tim, I have stage 3c ovarian cancer since 2013. I went through chemo then surgery then chemo after. Is your wife seeing a gynecologist/oncologist? This is difficult times for us with this pandemic around. Keep the faith. Any questions I will be happy to answer.
my mom was diagnosed with stage 3 in January had 4 chemos and then just had surgery this past Monday and dr wants her to have 2 more rounds of chemo which I think is a good idea to get anything that could be left around. Dr is pretty confident she got everything .. we are all so relieved!
thats great news - i wish your mom the best going forward. May I ask has your mom been given any indication of whether or not she will be receiving post chemo therapies ?
Hi Tim. I understand how your wife is feeling and my husband was definitely my rock thru surgery and chemo. What’s interesting is I don’t see how your wife’s surgery is considered elective, but I do see how you would not want to be exposed in any way to this virus especially with a compromised immune system. So, between a rock and a hard place, for sure. There are so many viable drugs available for post surgery, both IV and oral. Avastin was a very effective drug for me. I am 3 years out and have been on no maintenance drugs. Let your wife know that this is a very supportive sight and we are here for her and for your family. Keep us posted as to her progress and stay safe 😁🙏🏼
I am grateful for your reply.I am really happy to hear of how well you have managed as it helps to know of others who have had good results.
My wife will have a cytoreductive surgery with hipec on many 29th and the surgeon has said she is a very good candidate so we are very hopeful. Right now surgeons are very worried about patients picking up the coronavirus so that is an additional concern. We await the brca test results which I guess will determine which post surgery maintenance therapies would be appropriate.
First, the fact that your wife's CA 125 dropped so precipitously and is now in the normal range solely as the result of the chemo she's had already... is excellent news.
Next, you may be comforted by studies that have compared neo-adjuvant chemo (chemo given prior to surgery to shrink the tumor burden so the surgeon has a better chance of optimally removing all visible cancer) to surgery first followed by chemo. Results just about even.
It does stink that Coronavirus is impacting our community in serious ways. Ovarian cancer is tricky and complicated. We make our best informed medical decisions and our options may be limited by factors beyond our control or surprisingly opened up and we bravely play the hand we are dealt and take our chances. There is always room for optimism and hope.
Please keep in mind that every woman's ovarian cancer treatment and result is individual. There are many dedicated gynecologic oncologists and intrepid researchers, but it does take time to see what is promising and prove what works.
That said, in a nutshell, here is my experience, just as one anecdotal example: I was diagnosed Stage IIIC High Grade Serous at age 39 in 1996. (In 2000, as the result of a study I entered, learned I carry a BRCA 2 mutation.) Optimal cytoreductive surgery first followed by ten rounds of taxol and platinum during which my CA125 did get below 35 once I think, but kept bounding up to roughly 70. Nothing on scans but given three options at the time, we decided to do weekly Taxol, threw in some Doxil for three treatments and I stayed on weekly Taxol for 25 or 26 weeks. We live in NY and I entered a Phase II clinical trial in Philadelphia -- wound up NOT proving it's worth for the men and women enrolled, but for me, we got a simple answer of what was happening in the peritoneal cavity -- as in no cancer, NED. So here I am, age 63, no recurrences. Yet. Will resume breast cancer surveillance, Covid permitting. We got to raise our daughter to adulthood, I got to finish my career and receive the pension I most definitely earned, and my husband is going on year 32 of brewing the coffee I am sipping now.
Suggest you and your wife keep advocating for surgery as soon as it becomes a safe option. Doing a few more rounds of chemo prior to surgery sounds reasonable to me, a layperson who coordinates an ovarian cancer helpline and attends the occasional conference, reads stuff. And, who chose prolonged chemo for my mid 1990s self.
If you have any other questions or concerns an ovarian cancer survivor can help you with, I encourage you or your wife to either call the SHARE ovarian helpline -- 866-537-4273 -- or send in a web request through sharecancersupport.org and give your phone number. ( I have a Skype account and use it internationally on occasion if the stars align and you are flexible re: time zone differences. Covid has screwed up my sleep pattern in miserable ways I am trying to defeat.)
Wishing you more patience than I had when I was in treatment and, of course, the best possible outcome.
I must apologise for not acknowledging your email some time ago . Your success at fighting this disease is extraordinary and it gives me hope that we can also get through this .
Thank you for taking the time to provide such a detailed response. I found it very helpful . May I ask some further questions of you .
My wife Dympna has had 6 sessions of chemotherapy and is now scheduled for cytoreduction +/- Hipec on friday may 29th .
Thankfully the coronavirus has receded sufficiently so that our surgeon has recently started to operate on people who have had chemotherapy. Some women have declined to do this.
As he stated this is a complex surgery of 12 hours or so and the additional risk associated with coronavirus made it a more difficult decision for us but my wife has decided to go ahead.
We are hoping it will all go ok but we know there is increased risk . Prof Brennan (surgical oncologist) has said that Dympna is an excellent candidate for surgery .
Our clinical oncologist had previously indicate that avastin and olaparib are appropriate maintenance treatments. Dympna has had a brca test done but we dont have the results yet.
Are you aware of any other maintenance therapies currently in use in the USA that we may not be familiar with.
I will look at enquiring through the other contact points you have listed. Again I want to thank you for your supportive email as it meant a lot at a difficult time,
I sincerely hope Tim1963's situation has/will turn out well. I am so in awe of all who endured chemo recently or long ago and recovered. I am scheduled to begin similar post-op "clean up" treatment in a few weeks following what I was told was a successful surgery for uterine cancer. I had no spread to any area, but they found microscopic infiltration in the associated lymph nodes, which were also removed. I'm terrified of the chemo after seeing the list of side effects. I have gotten no answers to questions about which are rare, which are common, or whether the treatment is even proven to improve survival. All i was told was that there are now better drugs to thwart nausea and vomiting. The drugs they plan to use, Carboplatin and Taxol arent even intended for uterine cancer. Can anyone share any advice about overcoming the fear and coping with the side effects?
I also was treated with three rounds of Carboplatin , Taxol and Avastin. I was very anxious about nausea and vomiting but was given an IV infusion of an anti-nausea med with each chemotherapy infusion. I only had one bout of nausea which was controlled with oral medication. Just speak up and tell them your fears. They have some really good medication for nausea since that’s a common side effect but one that’s fairly easy to treat. If one anti-nausea medication doesn’t work they have lots more. Good luck😉
Thank you so much for your response! I hesitated to post again because I don't want to detract from the struggle of Tim's wife, but I don't know how else to get answers on this topic. I've been told that giving anti-nausea meds has become a standard of the infusion treatment, plus optional prescription and non-prescription anti-nausea pills to take at home, meds for constipation, and mandatory oral steroids to ward off allergic reaction. They also proposed using cold pads on feet and hands during treatment to try to reduce the neuropathy side effect (sounds pretty horrible to be tethered for hours while fingers and toes are freezing.) They can offer a prescription for a wig to cover the loss of hair, though I understand the eyebrows and eyelashes also fall out. But, my greatest worries are the fatigue and chances of kidney, liver, and/or heart damage with all the toxic chemicals. The chemo specialist admitted he doesn't know what dose or how many sessions would be overmedicating. He also said that adjuvant therapy isn't a cure and recurrence remains nearly as likely as without treatment. I'm now waiting for a second opinion to verify those conclusions and remain very anxious and uncertain. Can you, or others on this thread, please share more about how you felt during the chemo and how the doses and sessions were determined? What were you told about the effectiveness of adjuvant chemo?
I had cold packs on my hands and feet to decrease neuropathy and it really wasn’t bad at all. I’m always cold and I thought that would be awful, but with the extra blankets it was fine.
My surgeon explained to me before I started any treatment that if she operated first, it would be a more difficult surgery because my tumor was large and my nutritional status was poor. She also said surgery might be more complicated because there possibly would be more cancer to remove. She explained to me that statistically, there’s not a lot of difference between having chemo before surgery or vice versa. It just depends on the individual circumstances. I opted for three chemotherapy’s infusions followed by Debulking surgery ( with HIPEC) and will be having three more infusions. I was able to get much stronger and the chemotherapy reduced my tumor by half. The surgery went very well.
My anxiety about chemotherapy and surgery well worse than the actual treatments. 💜
Tim. Has your wife been blood tested (hereditary germline) for BRCA1 and 2? Has a tissue biopsy been tested for (somatic acquired) BRCA 1,2 AND HRD? These are VERY IMPORTANT TESTS! They will determine whether your wife is a good candidate for a PARP inhibitor such as Olaparib/Lynparza. This one has shown very good results as maintenance pill form drug for both germline or somatic BRCA mutations for people who are Homologous Recombinant Deficient = HRD+. You can read more about this at Biomedical Publications news on "Solo" trials. Best to educate yourselves now, so you can advocate for your wife's best treatments going forward.
hi,thanks for your reply. I was in contact with the geneticist yesterday and they still dont have the brca test results. thanks for the report details which i will follow up on,tim
Hi! I had assumed they always do chemo after the operation for that purpose. It seemed like that was part of my treatment. I don't actually understand why they emphasize that there is no visible cancer, when basically there is always a little bit after the operation. It's confusing.
thanks for replying. Yes we were scheduled to have chemo post surgery but due to the virus my wife had no choice but to continue with 6 chemo cycles while awaiting a rescheduled surgery . My understanding is that a ct scan cannot identify any cancerous tissue smaller than 1.5 cm as that is the limits of its measurement resolution but its the best available measurement device at present, tim
I think surgery would be a good idea. But I would try to recover at home, as I was in the hospital for an extended period of time and kept getting infections and complications. Since I did not have help at home, I was stuck in a very busy hospital and as a result I did not recover very well from my surgery. Now with this corona virus things are even more dangerous. It has been 4 years and now I fear the cancer is back. I am the only caregiver to my 2 young sons. I really need to stay healthy but because of this new virus, all of the cancer care has been cancelled or postponed. I live in fear everyday and hope that I will be around next year. I am not strong enough for any more surgery because of permanent damage to my body and I do not do well with chemo either-blood clots and so forth. So I will pray for you and all of us at this time. And if we go into a hospital even for hospice care, I fear we may not be able to see our loved ones. The hospitals around here, including hospice have closed the doors to visitors. So I guess in coming weeks/months many of us will just suffer and prematurely die from this cancer, or choose to die in an institution without our loved ones or just stay home without any medical care and let family watch us painfully die at home. This is so sad and just cruel. Good luck and stay strong and try to think positive!!!
hi, i am really sorry to hear of what you are going through . I cannot believe that you would be so kind as to find the time and generosity of spirit to think of someone else while you yourself are going through such anguish. Tim
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