worried

[Des1953]

I’m feeling a little bit lost at the moment, I was diagnosed with HGSOC last June.. I’m brca positive, after my debulking and chemo I’ve been given the all clear.. and no further treatment apart get 3 monthly blood tests… I’m so frightened of what’s to come as o was informed I do not require Parps?.. o thought if I was brca positive I would??.. I’m extremely down at the moment .. I was diagnosed with 2b hgs… should I be worried?.. xx

[Mrs_Thomas]

hi,

I had a different type of cancer but after debulking and chemo I’m not on any further treatment either just watch and wait. It’s scary but it gets easier especially as time goes on. I think now I can say it’s not as simple as getting Ned you will always live with it or the worry of it and it’s just getting support to help you with that xx

[Des1953 in reply to Mrs_Thomas]

thanks so much for replying… just feel a little on my own… I’m scared and don’t know what to think.. thankyou xxx

[Mrs_Thomas in reply to Des1953]

you’ll find now your not in immediate survival mode everything you’ve been through will slowly start to come to you for you to process emotionally. I found the aftermath tougher than I thought, there are loads of support groups and resources available to you though and try to concentrate on making plans for the fire things to looks forward to and that sort of thing. It really does help! Xx

[Mrs_Thomas]

future#

[Mammi]

Hi, easy to say but please don’t worry!The more you read letters on this forum you will realise that your feelings are normal. Now in my third year i am feeling more relaxed, even had a couple of holidays abroad but will readily admit that every so often I hit a brick wall & have to give myself a good talking to 😆I try to think of it now as living with having had cancer & surviving 🤗Pat yourself on the back for your journey so far & enjoy each day!! Big hugs DeeX

[Halo2O14]

Hi Des1953,

In the UK, I don't believe you're offered PARPs if you're stage 1 or 2 and you've completed 1st line treatment successfully. It's easy to say not to worry but it's natural to worry. I agree with Mrs Thomas.....its probably now after completing treatment that it will really hit you what you've been through. There is so much help out there from counselling to cancer support programmes. I was diagnosed stage 4 last year and now I'm on my maintenance so I have 3 weekly blood tests, these are not good for my anxiety!!! I'm currently trying a number of support groups to help me with this. The fear of recurrence is my biggest challenge but again I think this is fairly common. However, I am also making the most of things and getting back to things I love doing and spending quality time with all the special people in my life. If I get upset/anxious, I acknowledge it but move on. I've not been very active on this group but I've found it a great help ❤️ Take care, wishing you all the best! xx

[OvacomeSupport Partner My Ovacome Team]

Dear Des1953,

I'm sorry to hear that you are feeling a bit lost and down at the moment. I can see that some of our lovely members have already replied to let you know you aren't alone.

I just wanted to reply regarding your question about PARP inhibitors. The eligibility for PARP inhibitors is complex and it’s always important to get personalised information from your clinical team for advice on which treatments are most appropriate for you in your own unique situation.

However, you mentioned that you were diagnosed with stage 2b ovarian cancer. You don't say where you live, but the options available for first line maintenance treatment in England, Scotland and Wales are for stage 3 and 4 disease, so this may be why this is not part of your team's plan for you. I would suggest you get in touch with your team though as they will be able to explain and hopefully reassure you.

I thought it would also be helpful for you to know that Ovacome have a whole host of online support and activity groups you can join, to help you feel connected and supported. You can browse the groups and sign up here: ovacome.org.uk/Pages/Events...

If you would like to talk things through with our team, you can call the Ovacome support line on 0800 008 7054. We are open Monday to Friday, 10am to 5pm.

Best wishes,

Jo

Ovacome Support

[0462County]

Hello. I was diagnosed Stage 2b High Grade Serous last year. I am BRAC negative. I had debulking in June finished chemo 21 November. As much as I am glad chemo has finished, chemo was also my emotional safety net. Whilst I was on chemo, it was helping to get rid of any cancer. Now it is up to my body to behave and the cancer not to return. Like you I am lucky when I saw my oncologist on Wednesday to be told I am NED. I think we are on a rollercoaster of emotions after treatment. For me it is learning to readjust to a normal life again.

Love and hugs.

Beth

[Lyndy2]

Hi Des1953

You have some good answers here.

Just to add that it’s not that you would never be offered a Parp inhibitor if your cancer came back (let’s hope you are never in that position).

In effect you are leaving the big guns of Olaparib and Avastin in the locker but they will still be there if you should need them in the future.

It’s good news really because they believe that you have responded very well to your treatment and you don’t need a maintenance drug.

But I totally get that, after so much intense treatment you feel a bit abandoned.

Have you spoken to your nurse or oncologist about how you feel?

Perhaps asking them will prompt a conversation about how they intend to monitor you, if they will do scans etc and what the contact will be in the coming months xx

[thejoannabell]

Completing treatment and then wondering “what now?” has been one of the hardest parts of this experience for me too. I think it’s very normal, but that doesn’t necessarily make it easier. Time does help, you’ll find yourself thinking about it less and less. Also, taking advantage of the support resources at Ovacome , etc., helps a lot. Being diagnosed at stage IIb is also very good in terms of prognosis. So many of us were diagnosed in much later stages and are still hanging in there and doing well. I am hoping for you to find as much peace and freedom from worry as is possible with this diagnosis. ♥️

[SopSinger]

It's always difficult coming to the end of treatment and completely normal to feel lost (cast adrift). PARPs weren't even around when I was treated. I had Stage Ic mixed clear cell and endometrioid ovarian cancer and have been NED for nearly 17 years, never a PARP in sight. Sending hugs!

[organicinna]

yHI

No ou should not be worries with braca positive and stage 2b. Positive bracas to my observation respond best to all treatments especial on this early cought stage. So Hold your head hight dear and all the best.

[AuntyOrange]

I love this group. Read these answers over and over again Des53 until they stop being just words but the best advice you will ever get. They are words of wisdom from people who have been through the same experience you are going through now. You will never feel alone while you are part of this group of wonderful women. Take a moment to feel the HUGS (Health Unlocked Girls Support) 😉💜

[Kaitlinsmum]

Yes its understandable you feel lost just now. I would strongly recommend that you reach out to a support group now. The ladies in my group have kept me sane. Can I ask which part of UK you are in? I joined Sam's Diamonds, which is based in the north west. Take a look at the website and fb pages. Even if you are too far away to join the activities you can still benefit from online support from the team and members. I joined during lockdown so didnt meet up with anyone for about 18 mnths but spoke on phone and fb. Take care xx

[Karengarci]

Hi desI too am Bracca and diagnoised

[Karengarci in reply to Karengarci]

Hi des ....I too am bracca and was diagnosed star 2a hgsc in 2019 after debunking and 6 rounds of carboplatin finished my treatment and was told that parps are not available below stage 3 until after 1st reoccurence ....so like u I found it really worrying ...all I say is keep up with ur oncology appointments and don't be afraid to ask for scans and blood tests on a regular basis ...I ve just had a ct last wèk and awaiting results on 3rd Feb......this will hopefully put my mind at rest for a bit I'm normally offered 1 once a year ....my oncologist seems happy with this and I have learned to put my trust in her hands ...I don't really think the anxiety ever really goes away .......but always know u aren't alone and remember we are the lucky ones with an early diagnosis and a lot of people are not as lucky as us xxxxx