Elizabeth

[Mcgavin]

Good morning, my diagnosis back in Feb 2015 was ovarian cancer stage 3c high grade, had 3 chemios, surgery & 3 more chemios, went NED for 2 1/2 years. Yesterday I was told cancer is back and it is 2mm lump in the spleen and 2 mm outside, doctor wants me to operate asap & after 6 chemio, please advice?

[85live4ever]

Hi Mcgavin, I am so sorry to hear its come back. My gut feeling is go for the surgery. I finished my 3rd line back in the end of September & I have been told I will not be offered any more surgery. If they did offer it I would jump at it. I hope you can make your mind up take care Cindyxx

[Mcgavin in reply to 85live4ever]

Thanks Cindy, can I ask when you were first diagnosed?, what was your treatment?,when your had the first & second recurrence?, are you NED now?, I just asking many questions because I am so scare?, thanks Elizabeth 😊

[Purple-iris]

Hi

So sorry to hear your Cancer is back and can only imagine how devasted you must be after going 2 1/2 years NED . Am stage 4 high grade so am living with the dread of recurrence , almost a year NED and about to finish Avastin .

If you are unsure of plan I would probably get a second opinion , although I did go to the Christie recently and was told by a Prof there that the latest trials indicate that if secondary surgery is possible the outcomes are good and they are now recommending it where possible. . Think there was something about it in the last Ovacome magazine . So if you are being offered surgery to get you back to Ned I think I would seriously consider it . But obviously depends on the risks involved and recovery time .

I know difficult but there are many lovely ladies on here who have had treaatment for recurrence and have a good quality of life so hang on in there . Sending you love and best wishes with your decision and future treatment.

Love Kim x 💜

[Seasun36-uk in reply to Purple-iris]

Hi Kim. I am the same as you- Stage 4 HGS. I've had 3 chemotherapy treatments, extensive surgery & another 3 chemotherapy treatments. Now on Avastin 3 weekly for a year. What happens after that? What is NED?

[Purple-iris in reply to Seasun36-uk]

Hi

NED is No evidence of disease and is what they are aiming for after surgery and chemo , means they can’t see anything on the scan . After the avastin it’s a case of keeping everything crossed for a long remission and that it doesn’t come back , whilst making the most of everyday 😀

Hope all goes well with the avastin . Love and best wishes Kim x

[lesleysage]

Hello Elizabeth,

Like Kim suggests, I'd recommend a second opinion. I'm the lady in the Autumn Ovacome article on page 7 & 8 so won't repeat all that as you can read 'my story' if you wish. Also you can try talking to Anna, the Support nurse at Ovacome.

Warm wishes, Lesley

[chrissapam]

Hi, personally would have it if they are really recommending, don't think they would do it unless they thought there was a good chance of success...but if they change their minds, that could be good too. Think as positively as you can(!) love Chris xxxx

[lorraine71-Australia]

Hi Elizabeth, It is hard when you have a recurrence I'm on my 5th line of treatment in the last 3 years I've never been NED, I went for a second opinion about having surgery but I was not suitable for surgery I was disappointed.

Your DR seems to feel he can remove the tumors that would be a good result , so what ever you decide I hope all goes well..

Take care Lorraine xx

[Lizchips]

Hi I'm Liz, my doc told me that if cancer comes back strong chance it might show up in the spleen. I asked her what would happen she's aggressive but I'm alive today because of her. She told me surgery to remove the spleen and then chemotherapy. My Dr A. Hakim is in Palm Springs , CA. USA. I completely trust her. Maybe this may help you. Best wishes , Liz

[Lizchips]

Elizabeth I was diagnosed in 2014 with clear cell stage 3c. I had IP and IV chemo. Had a two lb mass. Three major surgeries and a couple small.

[Bettyxxx]

Hello Elizabeth

I don't write much on here but I am in the same boat as you right now x.

I have been disease free since my op in Feb 2014 but now it's back after a scan in November. I too read the autumn article which was so helpful, and have been lucky enough to see the professor mentioned in that article last week. She blew us away with her positivity and manor. She talked about the new evidence which now supports second surgery as the way ahead for recurrence but this is new evidence in the uk (not in Europe) so not widely practiced yet. I am going for my second surgery in early January and feel really positive about it. I am then having chemo again which is ok I was lucky last time and dint have many side effects

We have gone from feeling quite shocked to 'on a mission' lol it would be good to keep in touch thorough this journey if you want to you can send me a message I will tell you a bit more. I live in north yorkshire but having my op in London, I might write a bit of a blog as I go along if anyone thinks it's a good idea, I am a bit of a glass half full person so you will have to spot the down days! I found things similar that others had written helpful when I was first diagnosed.

I count myself amazingly lucky to have had those years as I know many others don't it's all a lottery, I take no suppliments I drink alcohol eat meat and dairy a descision I made in the early days as for me it was about living normally for however long that was until the next treatment. I really admire those who do stick to stricter diets maybe I would have had 8 years disease free but I am too chaotic! I only put this on as sometimes I think we can feel guilty for not taking a particular action, and my belief is it's all down to luck, although maybe hopefully I will be proved wrong one day 😀

Love to all those fighting the battle xxx

Diane

[Mcgavin in reply to Bettyxxx]

Hi Diane: thanks for your message, as you said we are in the same boat, I live in Leeds, which part of North Yorkshire you live, I am having my op in St. James Hospital, I would like to keep in touch with you, is any reason why you are having your op on London?, which op are you having?, I am glad I found you, I am so scared, I just found out about my cancer 2 days ago, my Ca125 went from 17 to 34, and then the CT scan done a week ago showed 2 lumps, one inside the spleen & another outside the spleen, next monday will find out when the op will take place. I am like you I eat meat, diary, try no to have sugar too much, I agree with you about luck, as nobody in my family have had cancer, I was the unlucky one. Please keep in touch Liz xxx

[Bettyxxx in reply to Mcgavin]

Hi elizabeth

I live near whitby but come near to leeds often as i have friends around wetherby. My surgery is quite complex as i have a 7cm mass near my bowel that is why i am going to London. Interestingly my CA125 is only 11 but has bever been high so for me its not a good marker. I found out 2 weeks ago and get a date for my surgery on monday next week. I am an ex nurse and wirked at st james hosp for many years its a brilliant centre and has excellent cancer care i believe. The op is to remove a section of bowel and a general clear up of any stray bits she finds when she gets in there lol.

I just want to get on with it now i am totally well otherwise so quite lucky really. I walk every day over the moors with my dog.

Dont be scared its just a bump in the road x take strength from others, lots of inspirational people on here x.

I am just getting my ducks in a row now and mobilising my support network for afterwards mostly to keep me in check 😬

All the best

Diane

Sent from my iPhone

[Tesla_7US]

McG, I have positive feelings about multiple surgeries because they have worked well for me and my two friends who also have OVCA stage 3C epithelial. I am currently 16 months NED. I would definitely have your spleen removed. Repeat surgeries are common here in Seattle. They get excellent results. My spleen was taken out nearly 2 years ago, along with many OTHER body parts. You can read more details on my profile. Best of luck to you. I think you'll do quite well, since you had a great response to your first line treatment.

[Perthgirl]

Elizabeth,I am with an gynae oncologist in Australia who is adamant that surgery for recurrence is proving very successful and feel sure that you are in good hands if your doc is recommending that followed by chemo. Best wishes and good luck xx

[Sherrym]

Hi Liz, this is Sherry. So glad you are seeking advice & support here. It has helped me enormously.

Whatever you decide luv, remember how much you achieved at Odyssey, all of us together; how none of us felt we could?

Second surgery is now quite common in UK, & becoming more so in USA. It can be VERY successful. I am alarmed by the negativity of your Doc, not sure it serves a good purpose.

In your shoes, I will go for surgery & chemo again. My surgeon was super positive, & said if I am fit enough I can be treated as a new case. I am sure you can get fit for this. Please s tay as positive as possible, & remember that there are many out there still living fab lives many years after recurrence

[Mcgavin]

Thanks to everybody who has replayed to my message, is great to hear that I am not alone in this journey, wish the best for all of you love Liz xxx

[triplets]

I firmly believe in surgery, my husband was diagnosed in 2008 with stage 4 bowel cancer. He had surgery to remove the tumour and then 8 cycles of chemo and was all clear for over a year when it came back in his liver. More chemo to shrink the three tumours followed by 60% of his liver being removed. Again all clear for just over a year. Back it came again in the liver, straight in this time and a small section removed. He then went on a trial for 6 months, was then given the all clear, but 6 months later a tiny tumour appeared on his lung. Straight up to London and tumour removed. That was 2011 and he has been cancer free ever since. His consultants all said surgery is always the best option, its removed, its gone. Good luck, I pray all will be ok for you. xx