my wife has recently been diagnosed with low grade ovarian cancer. it has spread everywhere including up her vertebrae. We are only 39 years old with 3 daughters the youngest of which is 6 months.
I can't find many posts with LGOC and bone mets to the spine.
She started her first chemo treatment yesterday on Carboplatin and paclaxitel. I think its weekly for 12 weeks. She has taken it well and is ambulatory.
It truly has been painful and heartbreaking to see her pain through radiation therapy and the back pain before that.
We are in Australia and our doctors still aren't sure as they haven't seen many cases like this.
would be grateful for any support or to be pointed in the right direction for a second opinion.
Regards
D & A
Written by
Anhlover
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Hi Anhlover, firstly I’m sorry to read what you are going through. I’m not sure I can offer much advice to you, but I’m sure someone will be along soon to offer some. You have come to the right place for support, this group is incredible and has helped me so much through my mums double diagnosis (High grade OC and a totally different rare cancer in the appendix, which was found in her debulk surgery). Also a very unusual/complex case. What I have learnt throughout this is there are lots of options to treat things in lots of different ways.
Are you British ex-pats or Australian nationals?The Christie in Manchester is a specialist centre where most cases are treated up north, my mum is under the team of professor Dr Clamp and also Dr Ali at St Mary’s Hospital Manchester who did her surgery. Both teams have been very good. But I know lots of people on here have lots of great consultants, Dr’s and professors they can recommend.
I’m not sure of NHS rules, but I know that the Christie treats privately too… not sure about the royal marsden London but I imagine that hospital also treats privately. Xx
Louie, has your mum been tested for Lynch syndrome? We all tend to forget that the appendix is part of the bowel, but ovarian and bowel cancer are both characteristic of Lynch syndrome, so if she hasn't already been offered, it would be a good idea to be tested. Ask her consultant.
Hi SopSinger, yes someone in here recommended this to me last year (it may have even been yourself?) and she was tested (according to McMillan) and negative… but it may be worth me asking again to double check. Thank you! Xxx
Hi, I can't offer any advice. If you are able to seek second opinion outside Australia I could strongly recommend my oncologist Dr Susana Banarjee, Royal Marsden, London. Google her and will understand why. Sending love x
Hi. I’m so sorry for what you are going through. I believe there is a low grade ovarian group on Facebook. I second the suggestion of consulting Professor Banerjee. It might be best for your wife to find a trial since low grade doesn’t always respond to chemo. But I really hope hers does. You might be able to do a telehealth consult with MD Anderson in Texas. You can call Ovacom for advice as well. Xx
Im waiting for a reply from MD Anderson for an appointment date. How do we contact Dr Banjeree and does she see international patients?
I think our main concern is having all treatment options open to us, and also experience in dealing with this particular malignancy.
Our doctors are great. And she is getting the best care available here. its just with our small population, the number of cases like this aren't many.
Her existing biopsies are being sent to Foundation medicine for testing. We will have a much better idea of what we are dealing with then.
thanks so much for the replies and support. we are reading through so many posts, and we are inspired by the resilience of all the families going through this.
I recommend MDAndetson in Houston Texas. I am from the states. They have a travel department to help with all the arrangements. They have hotels at greatly reduced rates to help.
I should think you will find a contact point for Dr Susanna Banerjee on the website for the Royal Marsden Hospital, FulhamRd, Chelsea, London where she works. Our hearts are with you.
Thank you for your post. I am very sorry to hear about your wife’s recent diagnosis and what a painful experience this has been for the both of you. I can see that you’ve had many responses from the forum community which I hope has been helpful.
I wanted to let you know that the Ovacome support team are here for you. If there is anything you would like to talk through, or anything we may be able to help with, please don’t hesitate to get in touch with us. You can message us directly through this forum, email us via support@ovacome.org.uk or call our support line on (+44) 800 008 7054. All our support services are open Monday – Friday, 10am – 5pm (U.K time); we’re here to assist with enquiries, provide relevant information or just have a friendly chat. As you’re based in Australia, you may prefer to connect via video call and there's more details about this available here on our website: ovacome.org.uk/forms/1-to-1... .
I also wanted share some Ovacome information resources with you that may be of interest:
- ovacome.org.uk/low-grade-bo... - This page also contains a recording of an Ovacome webinar from November 2021 with Dr Susana Banerjee who discusses the latest developments in low grade serous ovarian cancer.
- ovacome.org.uk/getting-a-se... - This outlines the process of getting a second opinion although please be aware that as Ovacome is a U.K based charity, some information may vary from the Australian healthcare system.
- ovacome.org.uk/younger-people - Please find here our information resources for people diagnosed with ovarian cancer at a younger age.
In addition, Ovacome run a range of support groups, events and workshops for people affected by ovarian cancer. Our friends and family support group meet monthly via Zoom, providing a safe space to connect with others who are supporting someone close to them with an ovarian cancer diagnosis. You would be really welcome to join us. For more information about the sessions, please visit: ovacome.org.uk/event/family... .
We also run specific groups for people diagnosed with ovarian cancer under the age of 45 (ovacome.org.uk/event/under-... ) and those diagnosed with an ovarian cancer that is not high grade serous (ovacome.org.uk/event/rarer-... ). Your wife would be very welcome to attend these sessions. I realise that as we are living in different time zones, these timings may not be convenient. Please do let us know if you have any questions about getting involved.
I hope this information is helpful and that your wife's chemotherapy treatment goes as smoothly as possible. Please do let us know if there’s anything we may be able to assist with.
We are so grateful to Ovacome and other ovarian cancer charities. The information has helped us greatly. Because of our location, the next step would be to wait for the next generation testing results and discuss all options with our oncologist and hopefully they will support us in trying to get access to any clinical trials not in Australia.
Those interviews with Dr Banjeree were great. We are just very grateful.
Dear Anhlover, So sorry to read your heartbreaking post . You have received some great advice from others and I have nothing to add , except to offer you support . May be with modern technology you c ould have your wife's doctors forward scans and test results to the UK or USA before you plan to travel . All the very best and please keep us updated.
I send my love to you both were all fighting the battle on here. And you have had some very sound advice, which l hoped has helped. Good luck with your future stay positive both keep well . Your wife really needs you. And hope you get the correct treatment for you wife . Sending love & hugs. SheilaFxxx
So sorry to read of your situation. I dont have anything to add to the excellent advice already given - you’re in the right place to find the best advice about oc. Wishing you and your family all the luck in the world with treatment and options. The science has come so far - the medics will have something in their armoury for your wife 💪. Stay strong. Love from Mel
I'm so sorry to hear about your wife’s recent diagnosis. I know how painful an experience this is for the both of you.
I'm not low-grade, (I'm HGS Stage3) but I am in Australia!
I had my surgery performed by Prof Tom Jobling, who has an excellent reputation. He is based at the Peter McCallum Melbourne and I believe he also performs robotic surgery for gyn. cancers. I then had IP/IV chemo treatment at the Mercy Hospital for Women in Heidelberg (Melb) under the direction of Prof Peter Grant. Sadly Peter Grant has just retired. He was an outstanding gyn.onc. surgeon and one of the nicest people you could ever meet. The head of the unit is now Dr Simon Hyde (who was mentored by Peter Grant). I see Simon or one of his colleagues on my 6monthly check-ups. They are an incredibly supportive knowledgeable team. If you are in Melbourne, I highly recommend the Mercy. If not, then I hope your wife can have treatment in a hospital specializing in gyn. cancers. Having my chemo in a room with only women going through the same type of cancer made a massive difference psychologically. We were a huge support to each other.
Wishing you all the very best. Please get in touch if you want to ask anything. Ruth
We are well looked after in Calvary Hospital with our current team. My wife is having chemo with women also. I am the only male who looks on from the waiting room. We have been told surgery is not an option as it has progressed to the bone. It may reduce tumour burden but there's no OS benefit.
At the moment the reality is that my wife needs a good response to Chemo, and we grind down the disease systematically. When that no longer works, I need to find other treatments/drugs and pray even harder. We won't have access to these clinical trial drugs no matter where I go in Australia. These trials also have strict criteria for entry. They also require extended periods of monitoring. Its just hard to know where to turn to from here.
Im waiting for the tumour testing results from Monash University and we will see where to go from there.
Thank you so much everyone for your support. my family and I will be a campaigners for life.
Thank you for taking time to reply. Sounds like your wife is being treated by a great team - they will definitely do what is best. I guess you take this one step at a time, but good that you're thinking on a future plan too if needed. I sincerely hope your wife has a good response to chemo and you can hold off on those plans for many years. You've definitely come to the right site for support, it sounds like you've been given good advice from others already. You can always ask anything on here and we'll all understand. Much love, Ruth
Hi, forgot to also mention Dr George Au-Yeung - he's a medical oncologist and researcher in ovarian cancer at the Peter MacCullum Melbourne. George was also part of the team when I had chemo at the Mercy Hospital for Women. He is a fountain of knowledge.
Hi. If you’re not already aware of it there is an international charity specifically fundraising for research and raising awareness for low grade ovarian cancer. The lady who runs it has LGOC herself and is based in New Zealand. She is well connected for LGOC and might be able recommend the best resources available in Australia specific to low grade.Website is cureourovariancancer.org
Hi Anhlover, my wife have been diagnosed as LGOC since 2015 and still with me and our daughter till today. As I known, this type of cancer is chemo resist and response rate is about 4%. My wife is under different treatment in the past 7 years and she only take 3 dose chemo which is not working. The things worked fine for her is avastin and and some hormone treatment. Hope it helps.
Thanks for the info enyuan. she is currently on her 6th weekly cycle of carboplatin+paclitaxel . the onc has discussed adding Avastin once we have a better picture of where things are going.
May I ask what stage your wife was diagnosed at? We have been told to expect 12months. hopefully we will get some results of tumour testing soon. to see what other treatments we can look at.
She has taken chemo really well and her CA125 has responded. just praying it continues that way and her spinal lesions will respond and resolve better than expected. will post an update once we do our 2 month scan.
Dear Anhlover, her stage is 3c when diagnosised. Do not fully trust the time doctor told us. Seven years ago, some doctors told me if her tumor did not response to the chem, it is about 6 months. LGOC is a kind of rare type ones which is hugely different with the commone high grade one. Personally, I do not think it can be cured but people could live with it for long time. Go through google scholar, there are some papers about different trials on the LGOC. I frequently share these results with my wife's consultant and she also pick some medicines based on the paper and her professional experience.
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