borderline stage 3C tumour

[PaulinaKosciak]

Hi, I am 33yrs old. In 2015 I was diagnosed with a large ovarian cyst. After this operation I was diagnosed with a serous borderline stage 3C tumour and had another operation. In December 2019 I was found to have relapsed and was diagnosed with the same condition as I had in 2015. So In January 2020 the remaining ovary has been wedged to remove the tumor. I am on 3months follow ups and since the surgery all is stable.

It has been reccomended to perform with fertility preservation as I have not had children yet and I am not planning to have it now. This would involve extracting the eggs (freezing them) during the surgery and removing the remaining ovary. There is a high risk that the tumor might come back. The doctors say is 50/50% and it might come back as a cancer.

As a consequence of removing the ovary, I would have to go through early menopause and take hormons. Could you please give me your thoughts on how do you feel on hormones? As I am torn between keeping the ovary and risking that it might come back but nobody knows if will or not or removing it and going thrugh menopause. Thanks a lot!

Paulina

[Lyndy]

Hi PaulinaI don’t know the answer to your question but I think it would be worth contacting Ovacome helpline, I believe there’s a support group for young women with OC and I’m guessing they might have experience to share xx

[PaulinaKosciak in reply to Lyndy]

Thank you. I have been thinking to give them a call tomorrow Xx

[Notage]

You might also want to research the longer term impacts about going into earlier menopause for your age group. I think it's helpful to know what your pathway could look like with or without ovary removal then you can weigh up all the different risks and benefits. It is a very individual decision though.x

[PaulinaKosciak]

I looked up already and it's not an easy choice!

[Notage in reply to PaulinaKosciak]

Also to say having your ovary removed also doesn't guarantee the disease won't reoccur. It could be an idea to have the fertility treatment (egg/embryo) preservation anyway as an insurance if the other ovary does need to come out at some time. After a lot of thought and discussion I have kept one of my ovaries. It is a risk but for me the right decision plus I'll be monitored.x

[PaulinaKosciak in reply to Notage]

I know it doesn't quaranty but it lower the risk apparently. I can't have the fertility treatment now. My doctor day it has to be done in the same time as the surgery and removal the ovary as there is a risk it might trigger the borderline tumor. My remaining ovary has been partially wedged. Have you had recurrence?Xx

[Notage in reply to PaulinaKosciak]

Yes agree it can potentially lower the risk if there is disease on there. It's really complex as even after surgery there is potential for microscopic disease to be lingering. Obviously the hope is that therapy eradicates them but we know there is often reoccurence (hopefully not though). For me it's likely I've had the disease for a very long time the diagnosis took years. I've had the surgery phase so now waiting on the therapy side. So early days still. I did explore hormone replacement when looking at my options but in general a lot of Drs are very risk adverse on this even though there isnt necessarily the research to support their views at the moment (in fact for some cancers the research is suggesting the opposite). I understand there is currently some research in the US looking at this. If you are not sure it could be worth getting an independent 2nd opinion (particularly about the timing of fertility preservation etc).

[PaulinaKosciak in reply to Notage]

May I ask what disease do you have exactly? And how old are you? What therapy are you going to have? Hmm intresting regarding hormones may doctor has never mentioned... I will try to find somebody for 2nd opinion! Maybe it's worth it to try. Have a great day

Xx

[Notage in reply to PaulinaKosciak]

I'm LGSOC (it took me a 3rd opinion to get the right diagnosis (borderline diagnosed twice before)). Low grade is generally chemo resistant which is generally the standard of care (it may work for the limited few). I've asked for my cancer to be profiled so at least there is a possibility of finding out what 'may' be the best therapy before I start. So type of therapy is not confirmed yet should know in next 2-3 weeks hopefully. I am slightly older but pre-menopausal hence the lean towards ovary preservation. There are no guarantees as surgery can also end up causing ovarian failure anyway but wanted to try. I would say my approach may be controversial (for clinicians and for those that have already gone through surgery) but it was the right approach for me and i accept those risks and/or benefits. The NHSs long term plan for cancer care is for patients to receive personalised care and should aim to achieve the outcome the patient wants. Everyone will have different outcomes they are trying to achieve. x

[koffeekat99]

Hi Paulina

It’s difficult to have to make these decisions, especially when there’s no clear right answer.

If your diagnosis is definitely borderline, there is a support group on Facebook specifically for people with borderline diagnosis.

You are welcome in this group too, but you might find more answers to your questions that reflect where you are currently.

It’s called’Borderline ovarian cancer/tumours’

I hope that helps.

X

[delia2]

Hi. If you think you might want kids I would freeze your eggs. It’s such a huge issue for women when it’s too late. Also I recommend listening to the most recent Living With Ovarian Cancer podcast. The woman who tells her story is very similar to your situation. See Levanah’s post here from a day ago. It’s her podcast. Good luck with everything.

[PaulinaKosciak in reply to delia2]

I am not sure if I want tbh. The early menopause side effects sound terrifying!

[Li33]

Hey Paulina! I feel your struggle, I am 28 yo and had both ovaries removed a month ago. In my case, I did not have a choice as my borderline had eaten both my ovaries, so I am in the early menopause team right now and cannot take HRT! If I did have a choice, I think I'd have weighted the impact of fear of cancer returning vs burden of living with menopause symtomps and future problems that may come with it FOR ME. I would also find expert doctors I trust and ask them to inform me and advice me on the medical level. What scares you the most? It is your life and your body, none can give you an answer to that. It is an extremely hard choice, but ultimately you will be the one having to live with it.

Giving my two cents. Keep in mind that either options are risks, not sure things - it's not granted that menopause will be hell for you and you can make lifesyle changes to mitigate its short and long term effects. Menopause is a very individual journey in general and every woman responds differently. Also, if you can take HRT (you should check if you actually can with a borderline), it will replace the estrogen lost so most people do well once they find the HRT that works for them.

Cheers xx

[PaulinaKosciak in reply to Li33]

Thank you Li. I am sorry to hear all this. and a massive hug for you and a big kiss. I have updated my story a bit and added more info. I have never met with a menopause team that would put some light on the whole situation. None of the doctors have ever suggested it too. And yes I think I can say that I am the lucky one who can take HRT.

xx

[Li33]

I think it's great you can take HRT and that should make you feel better about the idea of going into surgical menopause, as it really protects you from the side effects! My advice would be to ensure you gather all the knowledge possible before making your choice, so you can make an informed decision. To me, this would involve speaking with your oncologist about your cancer risk as well as with a menopause specialist about the risks/effects of early menopause for you. Unfortunately, the latter is something that you have to be proactive about as oncologists' job ends once they cure you from cancer. I know that there are a few menopause clinics/specialists in the UK - I'd reach out to them and schedule an appointment to have your questions answered.

Huge hugs to you!! xx

[PaulinaKosciak in reply to Li33]

Thank you, that's really helpful!!!

[Notage in reply to PaulinaKosciak]

Just to add to that I asked repeatedly to speak to a hormone Dr at the hospital to help inform my decision and they said i couldn't. I ended up going privately but did have to wait months for the appointment (due to the high profile on TV a lot of the Dr's are very booked up). Your hospital may be better though

[PaulinaKosciak in reply to Notage]

Thanks, which hospital is yours?

[Notage in reply to PaulinaKosciak]

Is there a way we can PM as don't want to put directly on here.x

[PaulinaKosciak]

Also I am not sure if any of you live in London but does anyone have information on CCG that funds? I have heard that I would need to be registered with Camden or Islington GP. Can I register with them If I dont live in those boroughs? They fund for ten years or until the patient turns 42.