Please send me some positivity.

[Nectirlawone]

I have just had the results of my CT scan and I have been told I have a recurrance in one para-aortic lymph node. I will either need surgery (if they can), chemo or radiotherapy. I'm so scared as this is my first recurrence from Stage 4 ovarian cancer and I'm only 56 and have two teenagers. I can't stop crying.

[Caleda4]

Hello there, I am so sorry you find yourself here again. The first name that comes to mind is Christina Fotopoulou in London. You could get a second opinion with her and if operable she would likely do it. I have had this same issue since 2020 first recurrence, then 2nd recurrence 2022. mine has been treated with chemo. Since August 2022 I have been on watch and wait with regular scans. I am much older than you at 79, and was diagnosed in 2015. I am very fit and feel really well, and take one day at a time, staying positive will help you. x

[Nectar24 in reply to Caleda4]

Thank you for your reply Caleda4. I think it’s just the initial shock but I will stay positive. I have an amazing surgeon and I have been told it’s treatable. You take care xx

[Irisisme]

Hello Nectirlawone,

Stay with me even though this sounds rough. I’m not as young (68) and don’t have children to worry about but I do have family who worry about me. I’ve had enlarged lymph nodes on a CT scan. I’ve had CT scan reports that are very long! I’ve been on this rollercoaster since 2016. I’ve never had an NED result and I’m now 5th line. In December my prognosis was months not years. I was turned down for trials (liver too damaged) and things looked bleak so I agreed to go back on to Paclitaxel as a last resort. My CA125 was in the thousands and Tuesday’s test was just 96!

I thought I’d had it but now I’m planning a trip to Spain (where I have family). I’m helping out with 2 local charities and I can plan beyond March. That’s not to say I don’t have abdo pain and hair loss etc etc but I keep taking the meds and at least it’s the season for woolly hats!

We don’t know how things will turn out but please don’t give up! It is scary when you don’t know which way to go. Will it be chemo or an op? There may be options you haven’t even heard of yet (you’ve already been told of a really great surgeon!).

Maybe you need help so that you can explain things to your teenagers, hopefully they can cope and may want to help you. How about asking Ovacome admin for advice here?

I can only wish you Good Luck and send hugs.

🤗🤗

Iris

[Nectar24]

Thank you for your reply Bobbylynn. I wish you all the best with your chemo and sending lots of positive thoughts. xx

[Swimbuddy]

Oh I so feel for you to be told you have a reoccurrence. It must be terribly worrying. On the plus side it has been identified and so they can treat it. I know how difficult it is not to think the worst, but try not to as that makes your horrible thoughts go into overdrive. We all understand how you feel and are here to support you. Sending healing thoughts xx

[Laz66]

Hi, sorry to hear its returned, always such awful news to hear. I am same age, 2 recurrences and was diagnosed 5 years ago. Its promising that you have 3 treatment options and it sounds to be in one area which is good. I have just been told I have the same node involvement today and have just posted for advice. I have had 3 previous surgeries and recovered well each time. I tell you this to give you hope if they decide on surgery. Its so hard to take it in when you have a recurrence. Please ring the helpline- I have found this so valuable when my head was all over when told of recurrences.

Xx

[ruthg55]

Hello Nectirlawone,

I'm sorry to hear you might be facing a recurrence. I sometimes think this feels worse than the initial diagnoses - it's absolutely terrifying. Everyone on here will know exactly how you are feeling, as we've all gone through it. But let me also give you some hope. I too had recurrence in para aortic lymph node just over 5yrs ago. It was confirmed via PET scan (rather than just CT scan) plus my CA125 had risen. I had major surgery to have it removed, it was in a very tricky spot, so I had specialist surgeons perform in Melbourne. I was out of hospital on day 4 but with a wound from diaphragm to almost pubic bone (basically same as first surgery). I didn't have any further treatment after surgery and, touchwood, all has been well since. Radiotherapy could be an option. I was only told about it after I had surgery. So maybe discuss with your team the pros and cons of both methods. Although I'm much older than you (68), my son was only 16yrs when I had recurrence. I worried so much about him. Give yourself time to let this news sink in, it is a shock. You'll feel better once you have a plan in place. Sounds like you have a good team that are suggesting options. Your surgeon has said it is treatable, once you get over this shock, concentrate on that (I know easy to say). The only thing I would want to know is can they tell that it really is a recurrence by CT scan alone.

Wishing you all the best and sending hugs! Ruth xx

[Goodgirl98 in reply to ruthg55]

Hi Ruth, thanks for sharing your story. Interested in knowing why you feel CT is better than PET scan. My understanding is the reverse; hence asking

[ruthg55 in reply to Goodgirl98]

Hi Goodgirl, I thought that a PET scan can distinguish between benign and malignant (if PET lights up tends to be an active node) whereas CT cannot. That was always my understanding, but of course best to ask the experts.

[Goodgirl98 in reply to ruthg55]

Oh got it. My understanding is the same as yours. I misread your last sentence related to CT in the previous post. Thanks for elaborating.

[Hota]

I’m so sorry for you. I have exactly the same problem and I have just had my first cycle of six chemo. sessions.

I was NED for 17 months. I was shocked and thought I would have been in remission longer. Unfortunately that is the nature of this horrible disease.

Don’t be hard on yourself I have many a cry. I think you will feel better when you know what treatment you are going to have and that something is actively being done. I certainly do.

Just remember you got through this once and you will again.

xx

[Torian]

Try not to lose today worrying about what may or may not happen tomorrow or next week or next year . Time is so precious don’t let it take it away from you twice .

Lots of great replies above , it sounds like you have a good team and options going forward.

[Motiva]

I hope you get a drain soon. The semi permanent Pleurex drain is very tolerable and can be drained as needed without any discomfort/pain. I got an immediate improvement from the breathlessness and had it for several months before the bevacizumab dried up the effusion.

Hoping you get the best of care,

F x

[Helvelyn]

Hi there

I know how you are feeling. I think after going through surgery and then chemotherapy you feel that you have beaten it. At the back of your mind you know that statistically it will come back but you hope that you’re the one that it won’t and then wham it’s back.

I’m 57 and it has reoccurred in my lymph nodes but in several places. Surgery isn’t an option. Currently I’m on watch and since September and the disease has remained stable. I have also started Letrazole in an attempt to halt its growth.

I don’t allow myself to worry too much. I think that nobody knows what’s around the corner.

There’s still chemotherapy options.

I know it’s hard but they will treat you and a lot of women on here are still going strong after they have reoccurred.

Keep us informed on how you get on. The news will settle in your mind and you will then cope with the treatment plan that is best for you. xxx

[Motiva]

Hi that is not the report we want to hear. Ovacome have some brilliant people to talk to who can help plan a conversation with the teenagers so they feel involved and understand something of what you are going through.

Your surgeon sounds very skillful and if there is a way of excising the affected LN she will.

I allow tears to flow when they need to be released.

Sending you kind thoughts and understanding ,

F x

[Pixiepurple]

Hi Nectirlawone,

I am so so sorry to hear your news. You got through the 1st round of chemo/meds/surgery.

You are stronger than you think. I was only diagnosed last June, no recurrence as of yet, but its always at the back of my mind.

Stay strong. You will come out the otherside x

[Leniko]

I’m so sorry. It is devastating news. I couldn’t believe it when I was rediagnosed in 2014, after 6 years NED. Just take it one day at a time and don’t overthink it. The treatments they have these days are truly amazing. I’ve been living with OVCA since 2008. I’ll be praying for your recovery. 🙏❤️

[Tealgirl7]

Sending you some good vibes. You are welcome to read my bio. I was diagnosed stage 4 HGSO almost 18 years ago. I have never been NED . I have had many ups and downs through the years. I was 56 on diagnosis and now 74 years old. I still have measurable nodal disease and presently on a drug trial. It is not easy but you do learn to survive the ups and downs and enjoy life. I am feeling well most of the time and enjoy life to the fullest.Wishing you the best. You can be the one!

[Nectar24]

Thank you all so much for your reassuring words. It has helped so much. My nurse phoned today to say that they are operating and I’ll also have chemo. It sounds positive that they are able to operate. Wishing you all my very warmest wishes. Thank you again x

[PPSCENE]

hello. Please don’t worry. My mum was in the same position as you. Received chemo and immunotherapy drug Atezolizumab and is NED and doing well. Chin up. You will be ok. Stay positive xxxx

[Saintgermain]

wonderful news so happy that your a candidate for surgery I was 22 months NED when my CA125 rose from 15-500 over 3 months I had a few enlarged lymph nodes so I wasn’t a candidate for surgery or radiation I’m finishing my 6th Carbo/taxol/keytruda tomorrow CA125 is at 14 had a petscan after 3rd treatment all clear I have to have another one in a couple weeks after my last treatment then will decide maintenance plan I’m stage 3B low grade Endometroid I have to agree the recurrence was harder to wrap my head around vs frontline you’ve got this wishing you the best!

[Tlflom]

Please just take one day at a time or think just one foot in front of the other. Fear lowers the immune system.

If radiation is discussed verify a safe distance between the node and aorta with all docs involved. This will put them on point.

[candyapplegrey]

Recurrence is tough. I had one after only three months NED. But at an earlier stage. But many ladies have had many recurrences and are still going strong. Let your family support you. Good luck! xx

[Lind58]

my mom after 5 years had her second reoccurance in this exact location. She opted for surgery and it was successful thus far. Wishing you the best. This disease is so unfair 🥹 my heart hurts for you