I has a consultation with the oncologist today and she confirmed that my enlarged lymph node is cancerous and is recommending surgery to remove it, almost certainly followed by chemo. I was first diagnosed in May 2019 and have been clear for three years. I feel so gutted and upset at this recurrence and am finding it really hard to manage. Please has anyone else felt so awful at a first recurrence? I'm sure I feel worse now than at the very beginning of all this, both at the idea of surgery and of chemo and losing my hair all over again. I'm not coping at all right now. Do you have any tips on coping please? Help!
Bluetilly
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Bluetilly
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Hi BluetillyI’m sorry you are dealing with this news… I think it’s harder in some ways when you recur… the dream of ‘maybe I have escaped’ is gone and you are back in uncertainty.
You have a good team by the sound of it and they are already making a plan. You might not lose your hair this time, I had carboplatin as a single agent and it was easier than the first line. Give yourself time to grieve a bit and I think you will find your way again… I know I sometimes go into a spiral at bad news but it doesn’t last xx
I felt exactly the same as you do now,I had three years in remission then in December it came back ,just didn’t know how I was going to get through it again.Had surgery in January followed by five rounds of carboplatin. I’m now just started on Rucaparib.
The lovely ladies on here helped me through it. Plus I had confidence in my surgeon and my wonderful oncologist.
You will get through this . I don’t know where we get our strength from .
I’m 79 years old so they must think I’m worth all their effort.
Hi Bluetilly - I too felt worse at first occurrence than at original diagnosis. I am stage 3c diagnosed in May 2020. Carbo/Taxol and surgery followed by Niraparib and Letrozole. Cancer in lymph node found on PET scan in January 2022 so had second debaulking in April. Removed 10 lymph nodes but only one cancerous. Now having a break to enjoy the summer and likely to start chemo in October. Wishing you all the best. x
I'm sorry to hear your news and that you are feeling upset and finding it hard to manage. I can see some of our lovely members have already stepped in to offer you support, which I'm sure will help you.
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Hi Blue TillyI’m in exact same boat as you so I feel your pain .
My recurrence first started showing last April and have been on watch and wait but in May I had thoracic surgery to remove one of the offending lymph nodes and another mass which they hadn’t picked up on until the surgeon went in. I still have two more in diaphragm and heart areas which are inoperable.
I went into overdrive when I first found out it was back and was so angry then tearful but now accepting snd in fight mode again.
As far as I’ve been told by my oncologist and other ladies who have been through this. the chemotherapy they usually give second time is Calyx which doesn’t make you lose your hair maybe just thin it a little.
The thing I’m finding difficult to cope with is there doesn’t seem to be a set path for recurrence and it’s very much individual situation snd oncologist opinion. I’m waiting
the outcome of yet another CT, and MRI and bone scan to see whether I’ll be starting chemo yet or not. I don’t understand why my oncologist is waiting when most others seem to go straight to chemo post surgery.
I hope you have a good oncologist and team to choose the right treatment for you.
So many ladies on here have had first second and more recurrence and still getting on and fighting this awful disease and that helps me along.
All best wishes to you, you will get over the shock and upset after a while snd get over this next hurdle xxx
Hi lovely I know how you feel but managed to get my head round it and coming up to my last chemo of 6 after chemo 4 my numbers came down from 600 to 63 so am thinking pos thoughts sending love and hugs xx
Hi. As others have said it’s quite normal to feel gutted by recurrence especially after a remission of three years. I take surgery as a positive sign. They normally don’t do a second surgery unless they can get it all. And you won’t lose your hair unless they give you taxol again. That may be negotiable with your oncologist. Sending hugs.
My heartfelt thanks to all you wonderful ladies who have responded to me in my grief. You’ve been such a comfort in my dark hour and I feel less alone now. It is so reassuring to know you are all there. ♥️♥️♥️
Bless u, it’s horribly shocking. I had recurrence at 6 years & was so shocked. Chemo cd be different blend, plus use cold cap. I kept ALL my hair on carbo/Caelyx & coldcap & only had to have 5.
Look on this year as buying u your next big remission, & do ask re PARPS as they cd give u much longer -even 10 years my onco says
Oh it's so gutting and awful isn't it? I feel low for quite a while.
Especially as you have been clear for so long. I had my recurrence in 2017 and I am still here ans still doing well, so please stay hopeful! Treatment options are changing all the time.
Do you know that the type of chemo you are having will make you lose your hair? Some don't! It is worth checking.
Tips for coping- I have loads. Take a day at a time. Are you open to trying meditation (I use some good ones on Youtube!) and yoga?
Speaking to a therapist can help. I found have some hypnotherapy by a trained therapist very helpful as it helps remove the anxiety and fear.
PM is you need any support, but keep doing things that bring you joy- dog walking, being in nature, sitting in a nice coffee shop etc.
Hey Nicki, I often think about you and wonder how you are! It has made my day to see you are still out there 'living it large'. I only logged in today as I'm having a wobble so you being there is epic!
Hi I'm in a similar position to you first recurrence and a cancerous lymph node some small areas which have cleared with chemo I've just had no 5 caelex and carboplatin no hair loss but thinning. I wasn't too keen on another op for the one lymph node so they have offered robotic surgery to see if it can be taken easily then finish with chemo no6 Wondering what surgery you will have or discuss id be interested to know thinking of you xx
Hi PoppydottyI saw surgical team yesterday and they think keyhole surgery might be possible or reopen old scar (sounds bit grim!) but they seem confident they can remove whole lymph node. It’s so hard to know what to do so I am going along with their advice. Chemo afterwards a distinct possibility but no idea which one. I would so love not to lose my hair again. Good luck with the rest of your chemo and keep well!
It is hard to decide they left final decision to me I will keep you updated this was my first recurrence after 6 years so I'm hoping everything goes well for us both xx
Hi thought I would let you know my op is on the 16th of September all being well,I have preop app on Tuesday, it is robotic hopefully as I did say I really wasn't keen on being opened up again. Hope you are okay just wish it was over I'm still feeling rough from my last chemo, Susan xx
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