Hi Everyone,
This is my first post. I was diagnosed with stage 2b OC, high grade serous, Jan 2017. Following op and chemo early 2017, the beast is back so back on chemo. Would like to keeping touch with you all as I am finding this world a lonely place. Also I am in UK and wondered how people get referred to Christie or Marsden in addition to their local hospital?
Lizziebee
Hi Lizzie. So sorry to hear you are going through a recurrence. Yr right it is a lonely world sometimes especially when you are going through treatment. Im not sure how you get a referral, might be worth you ringing them direct to ask or hopefully one of the other ladies will know and send you a reply. Take care. Sending you a big hug. xx Kathy xx
Hi Lizzie
So sorry to hear you’ve joined our recurrence group. It seems to be expanding rather quickly at the moment. I understand what you said about loneliness. However much love and support we have from family and friends, it’s only others in a similar position who have some idea what it’s like. I’ve found much solace and even plenty of smiles from the wonderful ladies here and so much wise advice too. There is a pinned post on the right hand side of this page about getting a second opinion and if you phone Ovacome, they may be able to advise you of the best way to be referred to the Marsden or Christie’s. They were really friendly and helpful when I sought advice a while ago.
Sening you all the very best for your treatment and a big hug. Jo 🌺🌻🌼🌹🌸
Hi Lizzie,
You can ask your oncologist to refer you for a second opinion at the Christie or Marsden, or if you aren’t comfortable asking them, you can ask your GP to do it. Don’t worry about offending your oncologist though, they are used to patients wanting second opinions. My oncologist was the one to recommend I get a second opinion at the Marsden.
Don’t feel alone any more - we’re happy you found us, and are a friendly and supportive group.
Vicki x
Thanks Vicki,
I will certainly take up the advice and ask my onc. I have received a lovely welcome from yourself and the others. Thank you so much it certainly helps to know you are not alone and can talk to others that understand.
Lizzie xxx
Hi Lizzie,
So sorry to hear of your recurrence, there are many wonderful ladies on here who can offer you support and guidance as you go through this and you are not alone.
I’m don’t have any experience of the second opinion process as I’m still on my first lot of chemo, and felt happy with my local hospital and treatment plan, but wanted to welcome you and send you lots of best wishes for your future treatment, do keep us posted on your progress and sending positive vibes your way,
Liz Xx 💖
Many thanks Liz,
I hope all goes well for you too.
Will keep updating. Please let us know how you get on also.
Sending you lots of best wishes and hugs.
Lizzie
I think it is harder when you get a recurrence as it does knock the confidence for six. But once you have started a regime, think positive and that this is going to sort the buggers out that helps. Hope the new chemo isn't too harsh and that you get a bigger break this time around
Thanks Suzuki
Yes it's really been difficult to cope this time and to be positive. I was so optimistic before but I have struggled this time. Your words are wise and talking to you all has already given me a lift
Thank you. Hugs
Lizzie
Hi - I am also dealing with a recurrence. My CA125 has been increasing the past few months but nothing was showing on my scans. Now they see a few areas where it has grown. I have an endoscopy scheduled for Friday and then meet with my surgical gynecological oncologist on the 30th. I feel exactly the same way as you. I was so much better when I first found out. This time I’m so scared. I was first diagnosed in November 2016 with stage 2c and had my surgery. Then followed with chemo from December through April 2017. Less than a year later my numbers started rising and here I am again.
I really hope you get some positives. I have started my chemo for the recurrence and was initially relieved to start treatment. However I am feeling very anxious about my mid way meeting with onc.
All the best wishes for your meeting on 30th
Lizziebee
Thank you Lizzie. Sending positive thoughts your way. The waiting is awful.
Hi
Welcome to the party 🎈
It’s no fun ending up here because of OC but everyone is amazing and the hints and tips for coping are fab
How long between treatments did you recur?
LA xx
Hi Lily-Anne
It was 10 months although there was no sign of the disease following my operation in December 2016. Chemo was adjuvant. So it's been a real blow to be in this position so soon down the line.
Thanks for your support. You are amazing and all so strong in moving forward. So glad I posted
Lots of positive vibes
Lizzie
I’m in the first recurrence party too. It wasn’t a shock exactly, but I think I though that I’d beaten it (we have to live in hope!). My team allowed my CA125 to go quite high before deciding it was best to restart.
This forum is unbelievably supportive, informative and caring. I’m writing this at 3:30 in the morning from a hospital trolley (in a ward though), waiting to find out why my bowels have seized up. As I write I am realising that no matter how caring and supportive family members are (and my bloke really is the best), unless you’ve walked a mile in my shoes it’s impossible to feel what this is like. Enter the forum ladies!!
Welcome to the club, stay in touch to get help, advice and support with a smattering of lavatory and graveyard humour in the mix.
Best wishes, Ali x
Hi Ali,
Thanks it's great to be part of such a great group when you are in this position. Sorry to hear you are in hospital. I hope they sort you out quickly and that all returns to normal
Bowels can cause problems as many of us know. Let us know how you get on.
Thinking of you
Lizzie
Morning Lizzie - I hate to think of anyone feeling lonely that is already having to cope with the beast! You are certainly in the right place for lots of virtual hugs, love and support. I was diagnosed in May this year with OC and I can honestly say that without this site I think I would have gone mad! The advise and support from woman who completely understand is invaluable! I no longer feel alone and isolated, I know I can always come on here and read an uplifting story that sets me up for the day. My Oncologist referred me to the Marsden. I am glad he did the care and treatment has been excellent.
Good luck.......chat soon. x
Hi LIzzie. Sorry you find yourself saddled with a recurrence. That's crushing news. If it helps, there are a number of us in a similar situation right now (myself included), so hopefully we can lend you some strength and vice versa.
I've moved back to Germany recently but lived in the UK before that, including almost 2 years following my OC diagnosis and surgery. The way I 'signed up' with the Royal Marsden was quite easy (I had private insurance at the time, through work):
1. Phoned MacMillan to get a steer for the cancer centers in and around London. Which ones come highly recommended?
2. Asked my GP to write a referral to the Royal Marsden.
3. Sent an email to the Royal Marsden introducing myself and attaching the referral, and asking for oncological support.
Within a few days, I was contacted and given an appointment.
Good luck with your chemo, and few/no side effects. Maus
Thanks Maus
Thanks for the referral pathway you used. Sounds like a plan to me
Will get on to it.
Take care lots of hugs
Lizzie
Hi Lizzie--in the US so cannot help with referrals but wanted to say you are SO NOT alone here--and everyone understands! I had my first recurrence 7 months after the completion of Frontline which was a shock --but settled into acceptance, had chemo again and got close to NED. Now on a PARP which (at least for now) is doing its job too. Wishing you luck with your next treatment and know that you can sign on here anytime to give both good and bad news or no news at all! Glad you found the group. oxox Judy
Thanks Judy
Glad things are working for you now. It's a real blow to recur.
Great to get people's views. It really helps.
Speak soon. Lots of hugs
Lizzie
Hi, Lizzie3bee and welcome to the most supportive and informative group. So sorry for your recurrence. I felt alone right after I rec'd my first chemo last March for my 1st recurrence from surgery and chemo in 2015. I have to say I was in total shock at my news since I wanted to believe my dr. when he said they got everything in the surgery and the chemo was just insurance. I just finished my second line a month ago. Got a Catscan which said all was clear. I am getting the jitters again about setting up my blood test for CA125. I do have to say that my perspective changed after joining this group. They all opened up my eyes to the idea that OC is like living with a chronic condition and we just have to stay ahead of it. Sound advice. This whole experience has profoundly changed me in the sense that I'd rather be home with my family rather than work. I have to work, but, enjoy my personal time all that much more. I do stress less at work, however.
I do wish you all the best for I know you got this, as we all do. We wouldn't be sharing our experiences if we didn't. Please let us all know how you are doing. I'm in NY, so, I'm not familiar with those facilities, however, I do know how awkward it is to ask for a second opinion. Do whatever your heart/mind tells you to do. Best!
XOX
Marisa
Thanks for the kind and reassuring words Marisa. I too was told that all the disease had been removed by op and that the chemo after was just in case. So for it to be back do soon really flawed me. I think your words are wise in that we have to be one step ahead of the beast. This forum really helps to keep your head above water and move one step at a time.
Thanks for your thoughts and lots of positives and hugs too
Lizzie
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