First recurrence

[DelilahB]

Hi. Has anyone had a recurrence to the liver? I’ve just been told this after first line treatment ended last July. I’m absolutely devastated. Also, the oncologist said that given the Covid 19, it would be too dangerous to start chemo. That leaves me in a very awful situation as the tumour in the liver could just grow and grow. So frightened.

[Lyndy]

Horrible news for you... sending a virtual hug ❤️

I thought it might be useful to know that when I was thought to have a recurrence my team were not keen to treat straight away and a second opinion confirmed this approach. They actually said that the best time to treat recurrence is 6 weeks before the onset of symptoms (!)

You don’t mention symptoms so I hope this will reassure you that a wait might be ok particularly against the current background of c19. xx

[DelilahB in reply to Lyndy]

Thank you Lyndy.

[Bowler70 in reply to Lyndy]

Hi, did you really mean 6 weeks before the onset of symptoms? How would one know when they

were arriving!I am currently having my first reoccurrence after finishing chemo in October then having 2 nd major operation in a year in December to remove 2 nodules and repair a hernia.Base line scan in February showed 3 nodules in the same place as had the others removed. In the current situation I agreed to wait for 4 weeks as I was pretty well but now I am having symptoms of twinges, bloating and loss of appetite. My husband thinks I should have opted for the chemo right away, seeing the oncologist next week. Hoping I havent jeopardised success but was not keen to rush back into chemo.

[win_56 in reply to Lyndy]

Hi Lyndy how long did it take for your symptoms to appear in recurrence and what sort of symptoms did you have if you don't mind me asking. Thanks.

[vipervictoria]

Hi. A recurrence on the liver is common, alas. There are many ways to treat it without chemotherapy. For example, radio-ablation which is now available on the NHS at some hospitals. Have you considered at second opinion at a centre of excellence?

[DelilahB in reply to vipervictoria]

I haven’t considered second opinion as yet because my consultant said he was going to have conversations with his radiologists to see what best course of action is. I’m just do disappointed as I was doing so well. X

[Neona]

Yes I had had recurrence in liver by the end of frontline chemo. I went for a second opinion in London and have been on a clinical trial for the last 2 years. I don’t think trials are recruiting but you could seek a second opinion by phone to set yourself up for treatment when the coronavirus situation improves.

[Hidden]

My first recurrence was two nodules in my liver and one on my lung, but the liver findings were inconclusive, my oncologist said unless they biopsy there was no way of knowing for sure if it was cancer. because of my rising CA125 I started 2nd line chemo anyway. At the end of treatment the lung lesions had disappeared, one of the liver nodules had also gone and one had reduced in size by half. Good Luck x

[DelilahB in reply to Hidden]

Thank you. How long after your first line treatment did you get a recurrence? It sounds hopeful that chemo can attack the liver spot. It’s a bit spot though, 2 cm. ☹️

[Hidden in reply to DelilahB]

I recurred after 6 months had hoped for a longer remission but it was not to be. My spot was 2cm and it disappeared. I remember saying “so it definitely was cancer” the reply was “we don’t know, it might have always been there”

[Nicky100]

Hi my lovely...I understand such hard news. I understand your feeling and how scary it is.

Firstly...even though it is scary, try not to panic, there are people here to help you. I was exactly in your position in 2017 and 3 years later, I am still doing well! I am doing sport, am still in remission, and there is hope!

I was only offered chemo too. Just like you. But I did a bit of research and found 2 incredible DR's working together in London. So I got a second opinion and then had surgery (your best bet). It wasn't what I wanted but the odds were really greater after surgery and if you have Britbox, you can see the BBC doing my operation and the surgeon Christina who did it. She is a unique surgeon.

I can send you all their details, just PM me if you need them or to chat.

Much love and we can do this together xxxx Nicky

[thomas62 in reply to Nicky100]

Hi Nicky, I'm so glad, along with all other ladies on this site I'm sure, that you are doing well and getting on with your life. Good luck and best wishes. Gwen X

[Nicky100 in reply to thomas62]

Thank you Gwen. How are you doing? xxx

[thomas62 in reply to Nicky100]

Hi Nicky,

Thanks for your reply and thank you - your story and the experiences you have been through with this disease is awe inspiring and does give us ladies lots of information ,along with hope, that we can battle this disease and that we aren't on our own.

As for myself, I had a second surgery in London with our lovely CF last October - I required bi-lateral ureteral stents before she could operate as had a growth on my right ureter and which she removed successfully. (this makes 3 surgeries in all now).The team removed everything visible but have since found out 1/2 bits were hiding. Have been onTamoxifen since before my last surgery and which has kept me stable. I have a review next Thursday - don't know whether it will be cancelled, or a phone review or a visit to Manchester - we'll see! How are you doing with your supplements cocktail Nicky - does it remain the same?

Best wishes. Gwen xxx

[Nicky100 in reply to thomas62]

Hi Gwen,

Gosh you have been through so much...? How are you feeling generally? You are in a great hospital and at least you will be getting some of the best care available. Do let me know how you get on, and what they say? I'm imagining it is a harder time to be going through all this, with all the uncertainty that is in the news.

I am doing well thank you. I am still in remission and my ca125 is 7 (test result last week). I was hugely relieved...as the time passes, I start to worry that things aren't working, but all is still very stable thank you.

I am finding Chinese herbal medicine to be really quite powerful for how I am. I think even my Dr's are a bit baffled, and I am sure it is everything I am trying that is complementary along with the amazing Parp inhibitors that we have now.

It was a bit scary this week as I was due to have to go to London on Monday to pick up medications, but my Dr has managed to post them to me which is amazing.

I hope you are feeling with all your new armoured parts Gwen? Much love, Nicky xxxxx

[thomas62 in reply to Nicky100]

Hi again Nicky,

I' m so pleased for you and truly hope that you continue on in such a great way. I think the Parps have been quite a breakthrough for a lot of patients. Nicky, who and where do you get your Chinese herbal medicine from? Are you aware of Jane McClelland's book and, if you've read it, what is your opinion - would you try her map. As for me, I feel fine - at my review post my last surgery in London the surgeons said I'd recovered remarkably well and would be happy to see me again if the need arose! Hope not!! Like you I try to keep busy and not fret too much abt things but, must admit, I have days when I have to give myself a kicking. I'm just over 6 yrs on now. Love and best wishes. Gwen Xx

[Differentforgirls in reply to Nicky100]

Christina is fabulous isn’t she?

I had an op with her in January for possible recurrence. The anaesthetist told me she’s the best surgeon he’s ever worked with.

She also had the most amazing bed side manner. She first offered me the op in December but after asking her what the difference in outcome would be in waiting another month, she said no difference whatsoever.

So I was able to celebrate my Mum’s 80th with the family plus go to a wedding before my op.

Hoping I can find your op on Britbox.

There’s always hope xxx

[Nicky100 in reply to Differentforgirls]

There is, hopefully. I want to be someone to give hope to women as I struggled to find any positive stories when I was first I’ll. I then found this site which has been a total lifeline to me.

I’m so passionate about what this charity does.

I’m so pleased you could enjoy some lovely uplifting days and I’m thrilled you met her too. She is an incredible surgeon and women xxx

[DelilahB in reply to Nicky100]

Thank you Nicky. I’m new here and just getting to grips with things. How to I send you a personal message?

[Nicky100 in reply to DelilahB]

I’ll send you one so you can easily reply.

If you click on someone’s profile picture, it should take you to a page where you can private message ( like Facebook) or you can click the icon with messages in the bar right at the top xxx

[TarbonNZ]

My second recurrence included Mets on the liver. 3 of them. I have just finished third line and my CA125 has gone down from 229 to 13. My CT scan showed some other nodules had reduced in size, however the liver ones had stayed the same. That is my reading of the report, which I have seen. I had my last chemo 5 weeks ago, and have a phone consultation with Oncologist this Friday where he will go through the results. We are in lockdown in NZ, so a lot of medical things are done over the phone. I had my blood tests done today, so don’t know what the CA125 is as yet. When my Mets to the liver first showed up, I was extremely concerned, still am if I am honest, however my Oncologist said that was the least of my problems, we needed to work on sorting out the rest, and the liver side should come right. It doesn’t look as if it has, but I might be reading it wrong. It would be handy if the same person did the analysis each time you had a scan. Some are very short, while this one was long and full of complex terms . Oh well, the truth will out on Friday.

The main reason I replied to you was that I delayed treatment for 12 months, and the liver Mets then showed up three months prior to treatment start. I was told the delay would not make things worse. It was a mutual agreement to delay, and it would give the chemo the best chance of working, and because this is the third time I have had carboplatin. This series was Carboplatin only. I have never been Ned, unfortunately. Therese xx

[DelilahB in reply to TarbonNZ]

Hi Therese. Thank you so much for you reply. I’m overwhelmed at the moment. Once I can work out how to send a personal message on this site, I will. In the meantime, take care. X