I’m struggling with a decision when it comes to the best next step for me. My local gynecologist scheduled me for an exploratory laparoscopy next Monday to confirm my OC diagnosis. In the meantime I spoke to an oncologist from a Belgian cancer institute (Jules Bordet) who told me that my gynecologist should also do a PET scan before laparoscopy and asked me about an MRI score (?). She also told me that it’s better to have this intervention done by an experienced gynecologist. However, they cannot offer this surgery as fast as my local gynecologist. So now I am left with the difficult decision of either having my ovaries and tumors removed sooner by my local doctor or wait for the Belgian doctors to perform the surgery later but potentially better.
I know it’s not easy to advise.. but what aspects would you take into account to make such a decision?
Many thanks.
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Lara1
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I wasn't sure whether to respond or not but my gut said to 18 years ago I was diagnosed with stage 4. I was a nurse in the operating room and had been ignored by my family doctor for almost a year regarding my symptoms. I eventually found a lump in my neck. I was lucky because I had a surgeon biopsy at the next day and it turned out to be cancer from endocrine origin. Then I had a CT scan which showed multiple areas of involvement so they decided it was ovarian. I immediately talk to a gynecologist at work who I had great respect for. She said to me it is not in your best interest for me to do the surgery and you should definitely go to a gynecological oncologist. They have the experience and the expertise to deal with this. I was given three treatments of chemotherapy and then had a huge debulking surgery. Following this I had four more treatments of chemotherapy. It was several months until I actually had the surgery from diagnosis.
My first two grandchildren were just born and last week they both graduated from secondary school and are heading off. I never thought I'd see the day.
Having said that I'm not a doctor but it worked for me and I did respect the opinions that I got at the time. I have been fighting this disease for the last 18 years. I have had a great life and hope to continue for a long time to come.
Please remember it is just one experience and you have to do what is right for you.
Thanks so much for answering and sharing your story Tealgirl7. In my case, the cancer is bilateral and seems to be locally contained for now. But to get the diagnosis confirmed, they need to remove my ovaries and take biopsies, hence the surgery on Monday.
I’ve called back the Belgian oncologist to get an appointment with an OC specialized gynecologist later this week, hopefully. I will wait for this appointment before making any final decision re the surgery.
Thats a great story to tell, Tealgirl7. May I ask you if you had NED (no evedence of disease ) after your main treatment (3 chemos, surgery, 4 chemos)?
Hi Lara, this has put you in an awkward situation. Here in the UK best practice recommends you are cared for by a gynaecological oncologist, rather than an 'ordinary' gynaecologist. This is because they have undertaken additional training in gynaecological cancer surgery and only work in this area. Obviously it is your decision, but like your other reply I felt I should tell you how best practice works here. I hope I haven't made things more difficult for you Wishing you all the best
Thanks for your reply. It’s hard to know which is better - get treated locally which is faster or wait longer for treatment in a more specialized center. I feel like I’m running against time. I also thought that I could have the initial exploratory surgery here so that I have a confirmed diagnosis and then go to Brussels for the complete debulking surgery if necessary.
My gynecologist here says he has removed ovarian tumors through laparoscopy in the past. But yes, you are right, the best would be to be taken in charge by the center.
Hi Lara , I can understand your dilemma and what a difficult decision to make. I’m in the UK and had a laparoscopy to confirm diagnosis. The surgeon was a specialist gynaecologist oncologist and before the operation explained what he might and might not take out , leave and why. One of my ovaries was 5cm the other 7cm . He decided to take out the smaller one for testing and leave the larger one until debulking. He took a number of biopsies to confirm the type of OC and I felt more confident knowing he was a specialist. I’m not sure how long you would have to wait for a specialist? Not sure if this helps or adds to your dilemma.
Thanks a lot for your reply! My tumors are also 5 and 6.5 cm. My gynecologist told me he will try to take them both out if they allow it (i.e. not stuck to other organs, etc.). If he can’t, he will only do biopsies. If OC is confirmed he wants to do a laparotomy (open surgery, seems to be the same as debulking but I’m not sure) to stage it. He also said there was still a chance it’s not advanced or borderline.
I am still waiting for the 1st appointment with the specialist. I’m hoping I can see him this week to at least get in, and see if he can take over my case and from when.
I saw in your previous posts that you have had chemo and you are getting surgery next week. Did it help shrink the remaining tumors?
Hi Lara, yes chemo has worked really well so far and tumours have shrunk making surgery possible. Hope you get your appointment next week and it helps with decision making. Good luck with whatever you decide. Xx
It is better to have a biopsy only and not be opened up. That way they may give you chemo first which is the standard of care for certain ovarian cancers. It is often not good to go in and start moving things around and maybe spreading it more so
Would you consider removing ovaries through laparoscopy as opening up? I’m really confused about this procedure - he told me it’s not open abdomen, as opposed to laparotomy, yet there will be potential organ and tumor removal.
Hi Lara , my experience of laparoscopy was keyhole and not opening up the abdomen. The laparoscopy enabled the surgeon to look , take biopsies and in my case remove one of the ovaries to help with diagnosing the type and stage of OC without disturbing the tumours too much. Before the procedure the surgeon explained he may or may not remove both ovaries, fallopian tubes, and he would decide once he had a look. I had CT scans before this procedure which identified that my cancer was advanced, and the plan was chemotherapy to help shrink the tumours before surgery. The surgeon who did the laparoscopy will carry out my surgery next week. It sounds like your circumstances are very different and hopefully and if cancer is found it’s contained and not spread. The results from the laparoscopy informed the treatment plan. It’s such an anxious time going through the diagnosis process and waiting for results. I found the not knowing really hard and once the treatment plan was in place I felt so much better. Take care and best wishes xxx
Thank you for the detailed answer, Sunsetime. It really helps clarify! In my case it seems to me the gynecologist together with the radiologist who performed the MRI reached the conclusion that there was no spread outside the ovaries as far as they can tell at this point. Hence the attempt to remove it in one go. But my gynecologist did say that he will not remove the ovaries at all costs, rather he will make this decision based on what he finds during the procedure, which by the way will also be key-hole as far as I understood. I don’t know though how experienced he is to be able to make this decision correctly. I’m trying to reach him to confirm all this as much as I can before next Monday.
Hi Lara, can only imagine the added difficulties sharing information between medical teams in different countries brings alongside the uncertainty about gynaecologist experience. I really hope the appointment goes ahead with your specialist next Monday who will be able to answer questions you may have about the impact of waiting and how long this might be. I hope you get answers also from your local gynaecologist about their experience of ovarian cancer surgery to help you with decision making. Not easy at all. I am still fairly new to this journey and when first diagnosed I remember I just wanted the cancer out. The process of diagnosis from my perspective seemed to take forever, however looking back the tests and waiting for results etc.., made sure I had the right treatment plan which I’m grateful for. It’s good news that your MIR results look like there is no spread, I hope there is a way to share the MIR report with your specialist. Good luck Lara xx
I spoke with a lady oncologist over the phone today and I’m waiting for an appointment with a gynecologist oncologist in the same center. She told me they won’t be able offer surgery as soon as they can here. Plus she was asking me if I had done a PET scan or at least for my MRI images to have a better idea, which is not easy to provide given that I don’t live in the same country albeit only 200km away. I’m hoping to go there in person by the end of the week if their specialist is able to see me.
That sounds great. It is nice to get another opinion. I know they need a biopsy of some sort to diagnose the disease and stage it. It will be good to hear what she has to say
So sorry you have found yourself here but you have come to the right place!
Can I ask a couple of personal questions - how old you are and whether or not you want to have a family in the future, as this may help inform your decision? I was 46 when diagnosed and had completed my family (my son was five at the time) so together with my husband and my gynae oncologist we decided to go for the radical option and remove everything (total hysterectomy, both ovaries, appendix, omentum, lymph nodes) rather than just the left ovary where the tumour was. Obviously this resulted in an immediate surgical menopause, which is a consideration too of course, but I’m glad I went ahead as before surgery they thought it was (from the MRI) a borderline ovarian tumour, but following histology it was diagnosed as an endometrioid carcinoma.
I was lucky enough to be stage 1C and given the option of six rounds of chemotherapy post-surgery, which I took. That was nearly eight years ago and (touch wood) I have been NED since.
I’m not sure if this has been any help at all to you but I guess I just wanted to share a positive(ish!) story.
Thanks Janine! I am 47 and I have a daughter so no fertility worries. If I understand correctly you did not have laparoscopy beforehand, but had radical surgery directly? I’m glad all worked out for you!
Yes that’s right. I was seen by Mr Jeyarajah at Hammersmith hospital in London and he had a top radiographer who was able to diagnose confidently that my cyst was suspicious from the MRI. As it happened she didn’t get it quite right but right enough to know it needed to come out. Mr J was prepared to open up and just take the ovary and then decide if he needed to go back in a second time later, but we went for the radical option straight away to avoid a second surgery.
That’s courageous! Plus your doctor was willing to operate without 100% confirmation it was cancer if I understand correctly. I don’t think they’d agree to this approach where I live. My gynecologist wants to have the biopsy results first.
Well the standard treatment in the UK for a borderline ovarian tumour (BOT) is removal of the affected ovary. So they were always going to operate once they decided it was a BOT, it was just a question of how much was taken. We decided it would be better to have a single surgery, rather than take the ovary, wait for histology and then potentially have a second surgery a month later or whenever to take the rest out.
Like most people in the UK I was first seen by an ordinary gynaecologist, then passed on to a gynaecological oncologist surgeon. From a CT scan I was told I had a 14cm tumour on one ovary and an 8cm on the other, with spread to the peritoneum, and with some bowel looped across the tumour. Graded at 3C.Like sunsetime I just wanted the tumour out, but they explained that the laparoscopy would give the surgeon a much better idea of what he was dealing with and they could take tissue for biopsy, and it would inform my treatment path. After the laparoscopy he told me that what he had found was 'more encouraging' than the CT scan had shown.
I think it is very helpful if the surgeon doing the debulking surgery also does the laparoscopy. I am also not convinced that taking out ovaries etc is helpful if you are going to go on and have debulking surgery anyway. I was warned that it is possible that cancer cells would be scattered during the laparoscopy, and it seems to me that the more you are taking out the more likely that is (I'm obviously no expert, though).
I went on to have chemo then the debulking surgery, then more chemo. It's quite early days for me (chemo finished in April), and I'm very heartened to read Tealgirl7's account, such a great outcome for a Stage 4.
I do hope that you manage to see the Belgian specialist - it might be more of a wait for the surgery, but in the grand scheme of things it probably won't matter. Every day seems endless while you are waiting for decisions and results, but when you look back it wasn't so long. (I saw the doctor in early July, finally got a diagnosis mid August, laparoscopy late August and chemo started at the beginning of October.) It is the worst time, but you will feel much better once you are on a treatment path.
Thank you for sharing your experience. It’s so very helpful! So you had your diagnosis before the laparoscopy and the biopsies? Did they also remove your ovaries and tumors in the laparoscopy or only in debulking surgery?
Part of me is hoping that it’s possible to get it all out through laparoscopy if it’s early stage, followed by chemo, avoiding debulking. But I don’t know how realistic this scenario is. I think I need to insist on a PET scan which would give more indication of the potential spread.
I just got the date of my 1st appointment in Belgium - July 4th. I don’t know when they could schedule a laparoscopy afterwards. I’m scared it’ll progress if I wait too long. So hard to decide.
Yes, a difficult decision for you. Can you ask them how long after July 4th they would be able to schedule a laparoscopy?My GP thought the mass I could feel wasn't anything sinister but sent me for an ultrasound. The doctor doing that said you need an urgent CT scan, so my GP referred me under the 2 week wait scheme we have in the UK. Two weeks later I saw an ordinary gynaecologist who said I need a CT scan (I thought I was going for a CT scan) so that took another two weeks.
But yes, in answer to your question, the CT scan was enough for them to say it is cancer, and that it had spread and that some of my bowel was caught up in it. The laparoscopy was to confirm diagnosis and for the surgeon to have a better idea of what he was dealing with. He only took tissue for biopsy. I'm not sure how he would have been able to remove ovaries, given that they both had large tumours adhered to them, plus some bowel involvement.
I had total trust in him and also the oncologist who dealt with chemo etc., and I think you have to have that. What type of scan have you had so far, to lead them to give you a cancer diagnosis?
July 4th isn't really too long to wait. I was a bit frantic about all the waiting (2 weeks to ultrasound, 2 weeks to seeing gynae, 2 weeks to CT scan, 2 weeks to seeing surgeon, 3 weeks to laparoscopy, 4 weeks before starting chemo) it is such an unsettling time, and small delays seem terrible - but they are not.
I would ask if you can have a scan before the local doc does the laparoscopy, which will probably give you the time to see the Belgian specialist. If they say no, then that's a whole other set of decisions.
I’ve had a transvaginal ultrasound, a pelvic MRI and CA 125 at 188. The MRI said suspicious masses, highly heterogeneous, ascites, no lymph node involvement. The PET scan could provide more information.
Another option is that he only takes biopsies. Apparently getting biopsy results also takes 2-3 weeks. This way I will have the cancer type sooner and in Belgium they will have all the info necessary to decide on best way forward.
Having him only do biopsies is definitely a thought, although my surgeon definitely found it helpful to see for himself what he was dealing with. Mind you, by the time it came to the debulking surgery the chemo had changed things so much, he said it was a bit like a concrete mass in there, so maybe it's not so important for the debulking surgeon to do the initial laparoscopy. My gut feeling would still be to have a specialist oncology surgeon do the whole thing as they will obviously be much more experienced.
I don't know how many extra complications you will have, with it being in another country - are there cost implications for you?
I do know someone whose cancer was caught in the very early stages, with no spread, and she had ovaries, tubes etc removed in a laparoscopy, and went on to have radiation rather than chemo. It is very early days for her, so I can't say what the outcome is. She was being treated by a gynae oncologist, though.
I had my local gynecologist on the phone this evening. I recounted the recommendations of the Belgian oncologist - have a scan of the full abdomen to exclude spread, only do biopsies without removing ovaries, or only one. He said there is a different protocol here - the PET scan is done post biopsy and the point of removing the ovaries and the tumors is to reduce the cancer burden before the chemo (I thought it was the other way around?). In the end he agreed to try to get me into a final scan and to reschedule the laparoscopy. He did make the valid point that the responsibility of my treatment needs to sit with one team not two. I was hoping he would be more collaborative but I can also understand that he needs to stick to how things are done here.
So now I have to see what happens next. My fear is that in Belgium they won’t offer surgery soon after July 4th. You had your laparoscopy 9 weeks after your ultrasound, correct?
There is also a cost reimbursement issue. Not just for the surgery but also all future treatments . Not easy. I have to take everything into account.
Hi Lara, I am sorry you faced this diagnosis. I was first diagnosed with benign tumors and scheduled for procedure to remove them by local gynecologist. After surgery and removal the tumors they histology came back positive for high grade serous ovarian cancer. I was 41 when I got OC dx and first I was told it stage 1. My tumors were 6 and 5.5 cm, both on right side. So after confirming cancer they scheduled me for another surgery . I had two kids already and took decision for total hysterectomy : both ovaries, appendix, omentum, lymph nodes. Stage 3C after that surgery and then 6 rounds of chemo. So if it was me I would wait for gynecologist oncologist, it would not have proceed from stage 1 to stage 3 within 2 months without doing first unnecessary surgery and seeding cancer all around. Please consider it wisely. And good luck to you ! Sending you positive thoughts!
hi Lara. Sounds like you are headed in that direction! But just adding to the other posts on the importance of having a gynecologist oncologist do your surgery. Especially if it’s suspicious and you have a raised CA125. Here in the US, that is common practice. I was referred right away from an ultrasound! The gyn/onc’s know what they are looking for! It’s also important for staging and also if cancer is found they can sample your tumor Certain chemo regimens work better on different types of ovarian cancer.
I was also diagnosed at 47 in 2015. Surgery, chemo and then actually more surgery.
Hi there, it was actually just over 6 weeks from my ultrasound to the laparoscopy, but 9 weeks from when I first saw the GP. Looking back that doesn't seem too long a time, but while it was happening it felt like everything was going in slow motion. I did worry that the cancer would be growing bigger and bigger at the time, and I don't know how much worse it got in that time.
I was graded 3c and had a very large mass on my left ovary, another on my right and widespread partly calcified omentum and peritoneal disease plus deposits in my Pouch of Douglas.
It sounds like yours is going to be far less serious, so I don't think you should take the time element into account.
My 'ordinary' gynaecologist had first booked an MRI but when my CA125 came back it was changed to a CT scan, so that does seem to be the best tool for identifying the extent of the problem. After the scan I was immediately passed on to the gynae oncologist.
Can I ask which country you are in?
As others have said, the norm in this country is chemo, surgery then more chemo, although with a lower level of disease they don't need to shrink with chemo first and can just get on with the surgery.
I obviously don't understand the cost implications for you, and agree that it would be better for you to be under one team rather than two. Does your own country not have specialist gynaecologists? Why is your 'ordinary' gynaecologist not referring you on?
Hi Lovemy, thanks for your reply. I live in Luxembourg. The main hospital has an oncology team but there is no gyne oncologist on it as far as I saw on their website. The majority of gynecologists have private practices in the city. Mine is actually well known and considered very good mostly for pregnancies. He is affiliated with the hospital and in his title there is a reference to oncology. He probably treats cancer cases from time to time, but I don’t think it’s the main activity in his practice.
Lucky you to live in Luxembourg!I would have thought that it would be a fairly regular thing for patients to be referred out of the country if there isn't a specialist (in any discipline, not just gynae oncology). Is there not a system in place for this?
How long a journey is it for you to travel to the Belgian specialist? I would really want someone who did these ops on a regular basis to do mine. Could you not have the surgery side dealt with in Belgium but be referred back for chemo if that was needed?
Here we move from a gynae surgical oncologist to a gynae oncologist specialising in chemo & radiation. But they do work as a team and discuss their cases together as needed.
There is a referral system in place but it applies if the treatment is not offered locally. It must be filed by a GP who needs to explain the reasons why it can’t be done here. Since the surgery is offered and there is an oncology team at the hospital the application can be rejected.
Hi, I was diagnosed with a suspicious ultrasound scan of the ovaries in 2018 saw a gynaecologist did a blood test CA125 normal at 9 didn't do CT scan but booked in for abdo hysterectomy and washings procedure. Diagnosed with cancer after one week. Referred to oncogynaecologist three weeks later had radical debulking surgery diagnosed stage 3c. Three weeks after started chemo. My CA125 remained normal throughout which can be the case. I feel that time was wasted and physically and mentally I was a wreck after so here's hoping you get as much info as you can before making your decision. Wishing you the best xxx
I cannot answer for you but my gut tells me if it was me I would be waiting for the gynae oncologist. They are the experts in their field, when I was worried about my cancer spreading before surgery I was told that a few weeks would not make any difference - like Elena mentioned earlier there is the risk of someone ‘poking around’ who is not a specialist spreading or scattering the disease unintentionally. I was diagnosed with endometrioid ovarian cancer stage 1C1 after maybe 6-8 weeks from referral to surgery. My tumour was huge (football/watermelon size) but I have had a good outcome (so far) and I feel like that was mainly because we went straight for full debulking and hysterectomy. I was 46 with grown up children at the time.
Ladies, thank you all for the great advice! I did the CT scan last Thursday which did not show any disease in the rest of the abdomen. And after discussing with a couple of doctors at the cancer institute in Brussels, I did go for the laparoscopy, done here yesterday morning. It turns out I only have one large mass on the right ovary, nothing visible on the left. My gynecologist only took biopsies and I am now waiting for the results and hoping to schedule the debulking surgery in Brussels in the coming weeks. And praying it will not spread around in the meantime..
I will keep posting my updates as I make my way ahead on this journey. Good health and best wishes to all!
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